Naked Science Forum
Life Sciences => Physiology & Medicine => Topic started by: OldDragon on 13/06/2008 01:04:46
-
Okay, I'm new here, and at the suggestion of an existing member.
As the title says, and within reason according to my circumstances, I'm willing to offer my living body as a subject for serious medical research in areas that may help me achieve some benefit/s whilst still around to enjoy it/them, and to further research and understanding of particular conditions whilst I'm able to give verbal feedback.
I have quite a complex medical history that includes spinal damage; fibromyalgia and recently diagnosed breast cancer - oh, and I need to lose around 4 stones to aid mobility but without that impacting on pending chemotherapy (following lumpectomy and full lymph node axillary clearance) and fibro associated IBS sensitivities.
My background is psychology related and I write.
Open to genuine suggestions and discussion.
[MOD - Subject heading altered to make it a question, in line with the forum style - CS]
-
So you want to be a guinea-pig?.
You could volunteer to participate in a drug-trial to test a new treatment for an illness you have...
http://www.entertrials.co.uk/clinical-trials-home
Testing new medicines is not a risk-free exercise.
-
That's probably not an option open to me at this present time - chemo pending, and all that. Not really what I had in mind, either.
It could be that elements of my case history tie in with research already being undertaken? Spinal trauma links with fibro and/or drug sensitivities, for example, or perhaps someone is looking into the options for fulfilling the dietary needs of those with compromised mobility that precludes a healthy exercise regime?
With an immune system already compromised by FM, possibly feedback on the effects of undergoing chemo as that might relate to fibro might be of interest to someone?
All I am doing is offering an opportunity that might be of use to someone in the medical science research field, is probably unique, could benefit others and, if it's workable, a willingness to assist them with feedback.
I've been hospitalised twice during the past month and undergone two surgical procedures. During that time I had to cease taking anti-inflammatory medication because of the risk of excessive bleeding during surgery, and the knock on effect of that, possibly coupled with the surgery, on my spinal damage has been severe, and includes crippling muscle spasms and pain that did not respond to any analgesics prescribed, and only minimally to muscle relaxing medication at the prescribed doses. My biological time clock appears to have taken on a mind of its own, and insomnia a whole new meaning known only to itself. I've no idea what my natural brain chemicals are doing - gymnastic exercises off the tops of electricity pylons for all I know, amd judging by the sensations akin to bouncing a cattle prod around and between my shoulder blades. (And they have me on corticosteriods in an attempt to settle that down at the moment - something that's been resorted to successfully in the past.
Before anyone makes any assumptions - no, I'm not further frying my brain with worry or anxiety over the cancer. If I could lie down for long enough to fall asleep before the next electrical spasm strikes, I assure you I'd sleep like the snoring dog without a care in the world and currently taking advantage of the chance to keep the sofa warm for me! Fact is, I've not been able to sleep in a bed - other that the hospital one that helped kick this whole performance off over a month ago - in over 12 years. Sometimes I've gone for weeks without sleep, just a few minutes dozing here and there between the spasms.
I am not afraid of death and I'm not afraid to talk about it. Like I said before, my background's psychology related, and if anyone wants to ask questions, and for the right reasons, feel free. I retain the right to withold an answer, but generally prefer to shoot straight from the hip and as honestly as my level of self-awareness and understanding allows.
The fellow who introduced me to this forum said you probably wouldn't know what to make of me. You are not alone! My doc's at a loss too. I gather I'm to have an MRI and bone scan at some point in the near future. Perhaps... just perhaps, there might be some clues there?
-
Hi OldDragon,
I am not suggesting that you stop taking corticosteroid treatment, however this medication may explain your "fried brain" and insomnia symptoms...
The steroid psychoses we saw presented as a spectrum psychosis with symptoms ranging from affective through schizophreniform to those of organic brain syndrome. No characteristic stable presentation was observed in these 14 patients, but the most prominent symptom constellation to appear during the course of the illness consisted of emotional lability, anxiety, distractibility, pressured speech, sensory flooding, insomnia, depression, perplexity, agitation, auditory and visual hallucinations, intermittent memory impairment, mutism, disturbances of body image, delusions, apathy and hypomania
Since our study, several other critical reviews of the literature and new studies have become available. This newer literature provides longitudinal insight into the nature of steroid induced mental change. The incidence of steroid psychosis varies widely in the literature ranging from 13 to 62%, with a weighted average of 27.6% for some steroid induced mental change, the vast majority of which are mild to moderate and do not herald the development of a full-blown psychosis or affective syndrome. The incidence of a severe psychiatric syndrome in the more than 2,500 patients reported in the literature ranges from 1.6 to 50% with a weighted average of 5.7%.
http://www.drrichardhall.com/steroid.htm
TABLE 2
Adverse Effects of Steroid Therapy and Cautions.
Neuropsychiatric:
Headache, vertigo, seizures, increased motor activity, insomnia, mood changes, psychosis.
Use with caution in patients with convulsive or psychiatric disorders. Use may aggravate preexisting psychiatric conditions. Steroid-induced psychosis is dose-related, occurs within 15 to 30 days of therapy and is treatable if steroid therapy must be continued.
http://www.aafp.org/afp/980800ap/zoorob.html
-
Thanks for that, although the symptoms described by me were present prior to the introduction of a short, 6 day course of Prednisilone 5g gasrto resistant three days ago and and at a dosage of 6 6 6 3 3 3 per day. This in an attempt to reduce swelling and inflammation between my shoulder blades. I've had to resort to this on two previous occasions, and when it has proven successful. The last time was in 2003 and at exactly the same dosage.
At this present time, I don't feel as if my brain is 'fried' - although it was heading that way prior to commencing the Prednisilone course, and after having had the anti-inflammatory medication withdrawn. In my case, that was simply a minimal dose of common aspirin taken only as required as a maintenance dose, due to experiencing undesired side effects when prescribed such as Diclafenic, Mobic, Ibroprofen and their ilk. Heck, I've enough to contend with without extra side-effect symptoms! Lol
Assess for yourselves, if interested, the state of my mental capacity to function rationally. Warn me, please, if you can identify anything I'm failing to register. Three days ago I knew I was not far away from verbally removing the head of the next idiot to cross my path. ;) Well, if they lead with the chin...
-
If your cognitive problems preexisted the corticosteroid treatment then they could be the "brain fog" associated
with fibromyalgia, a.k.a "fibro fog"...
http://en.wikipedia.org/wiki/Fibromyalgia
-
Oh, I am very familiar with the Fibro-fogged brain and cognitive impairment, but am not aware of having such affectng me at the present time - although perhaps you have spotted something in what I've posted above and that I've failed to recognise? It can happen. Feel free to point it out if so. I appreciate honesty and directness. Thanks.
-
(Strange... Did I imagine a post from you above this, D? ;) No, surely you deleted it?)
Okay, thanks - but seriously, RD, if you (or anyone else) should spot something that indicates it, please warn me. That way I am in with a chance to address it as early as possible.
I'll be logging off shortly - helper arrives at 8am, district nurse soon after to attend to the drain that I still have in situ from the ANC op last week. The former is sure to 'tell' me I 'should' have got some sleep last night. ;) Bless her, she means well, but I doubt could walk a few yards in my shoes, let alone a mile. Lol (Who the devil would want to?)
-
Just a couple of thoughts...
If you want to participate in research perhaps someone on a Fibromyalgia forum may be able to put you in touch with researchers.
Medications are available to prevent muscles going into spasm (spasticity),
these include Baclofen, Tegretol, Tizanidine, even Botox injections.
These treatments would only be available from a doctor.
http://www.scoopshare.com/Health/Fibromyalgia/Drg_Baclofen.cfm
Tizanidine
From Wikipedia, the free encyclopedia
Routes Oral, Intranasal, Injection
Tizanidine (brandnames Zanaflex, Sirdalud) is a drug which is used as a muscle relaxant. It is a centrally acting α-2 adrenergic agonist. It is used to treat the spasms, cramping, and tightness of muscles caused by medical problems such as multiple sclerosis, spastic diplegia, back pain, or certain other injuries to the spine or central nervous system. It is also prescribed off-label as a sleep aid, seizure inhibitor, and for some symptoms of fibromyalgia.
http://en.wikipedia.org/wiki/Tizanidine
Some anticonvulsant drugs are effective in treating bipolar disorder, fibromyalgia...
The anticonvulsants are also known as anti-epileptics. They were designed -- and are approved by the Food and Drug Administration -- primarily to treat people who have various kinds of seizure disorders, including seizures or convulsions caused by epilepsy, strokes, and brain tumors. Several -- phenytoin (Dilantin), carbamazepine (Carbatrol, Tegretol,), ethotoin (Peganone), and valproic acid/divalproex (Depakene/Depakote) -- have been on the market since the 1950s. But a "second generation" of anticonvulsants was developed in the 1990s. These include gabapentin (Neurontin), lamotrigine (Lamictal), pregabalin (Lyrica) and topiramate (Topamax).
http://fibrotoday.blogspot.com/2007_09_01_archive.html
-
I've been prescribed Diazepam for the muscle spasms. First dose reasonably effective, second moderately so... third and guess what?
I get the same problem with many analgesics. My system seems to adjust rapidly to counter their effects, dosages are increased, and suddenly my system decides it's had enough of that, and rejects it... puting my back into a spasm in the process of retching. First time I tried Dihydrocodeine I got eight hours relief from pain and rode a horse for the first time in a year. Second tablet's effect lasted five hours... A couple of days later the doc doubled the dose and the system rejected the lot.
I am already a member of a fibro forum or two. Probably too complex a case history for them to touch, although some interested in any outcome from here, should anything materialise that could prove useful.
Personal logic applied to this, and these severe flare periods, has me concluding it is the inflammation kicking off, then applying pressure to the nerve endings in the thoracic vertebrae that must trigger changes in the production of brain chemicals, so likely neurological. If I am able to manage the inflammation effectively, I have had quite long periods of relatively little pain or other symptoms.
-
Seems that so far no one wants to take up the offer, but in case someone does and it means anything at some future date, I am STILL awake! Nothing so far that I have tried to knock myself out with has worked and all I have left that is remotely likely to have any effect, and that I can safely take, are the hayfever pills! (And I haven't even sneezed today, so perhaps there is a God after all? Lol)
This, by the way, is how I was several years ago and when the doctor I was then consulting told me to go away and learn to live with it. Only difference between then and now, apart from how much I have aged, is that then I didn't also have cancer. (And I am still trying to learn to live with it.)
One final laugh for you before I let the PC do an AV scan... I went to the front door for a breath of air and a neighbour stopped to tell me how well I was looking! LOL I must remember to steer well clear of them if I see them behind the wheel of their car! (Or perhaps they are lying through their eye teeth just to try and make me feel better?)
-
I don't know if any of this is of interest at all to anyone here, or could be in future, but for the record, I am still awake and in a sitting position. The action of attempting to lie down results in some type of nerve compression that brings on the sentation of an electric shock and muscle spasms that wake me up even more.
I still feel as if my head is rational and not fogged either by fibro or lack of sleep - I feel quite awake mentally, although aware that physically my body is in need of sleep. I have been told by ex-military pals that there are similarities between this apect and what is referred to as battle fatigue as experienced by front line troops fighting in a war zone. I'm not ex military, and have no medical qualifications.
I don't want to bore anyone here with this, or take up space if what I am doing or saying is inappropriate, or unlikely to strike any chords that could be useful to research or furthering knowledge into any of the condtions I have. All I can do is to tell it as it is from my perspective and hope.
If the moderators here feel I'm wasting their space and my time posting, I will not take offence if they say so. Neither will I take myself off feeling angry or rejected. As long as my head remains reasonably rational, or someone with the ability to recognise signs of deterioration in that respect and warns me, I am quite capable of dealing with my emotional needs and addressing those. Well versed, in that respect, in fact. Lol
Perhaps someone can answer one simple question?
Do you think it appropriate, or potentionally useful to medical science for me, as a talking guinea pig, to continue updating this thread?
-
Please do not be disheartened !
This is a most unusual offer/invitation you have made. You have also made it on the cusp of the weekend where things notoriously slow down......not just here but in all forums.
I just wanted to quickly post a ' wishing you well ' comment and to welcome you here....
It's possible that you might achieve quicker responses by contacting research institutes/teaching hospitals directly. I personally don;t have any contacts in this area but it's a suggestion nevertheless....
...though the main premise of my posting was just to offer a virtual hug and to say please do not be upset if an offer to accept your invitation fails to materialize here.
-
Thank you, Neilep - make it a gentle virtual hug though! Thanks to the muscle spasms, the ribs feel like are already broken. ;)
To reassure you, I don't feel disheartened at all, or upset at the lack of response. Simply a little uncertain as to how others here might be reacting to my post. I am well aware that my style of telling things as they are can be intimidating to some, although felt that the science world could take me on the chin, and in the spirit meant. Post as I have here on a fibro forum, or even worse, speak it aloud at a meeting of a local CFS/ME/FM support group, and one starts to hear the knicker elastics snapping and folk looking for oxygen cylinders. I stear clear of the latter now and have done for years. I already have what they have, plus a bit more, and do not desire to dwell in the illness whilst sitting on the pity-pot - I am a looking for the recovery. Tea I've substituted for apple juice in the hope it can help detox my system after all the ineffective meds I've taken over the past hours of wakefullness. As for sympathy, to me it belongs in a dictionary and somewhere between sick and syphilis. ;)
With the ongoing cancer treatments pending, there would be little point at this stage in contacting those research institutes or hospitals you suggest, but something to bear in mind for the future, perhaps? (Not that I can travel far, anyway.)
Before I go, I repeat... do you think it appropriate, or potentionally useful to medical science for me, as a talking guinea pig, to continue updating this thread?
-
If I were you I’d try the medications which some people with fibromyalgia have found effective before I would volunteer to be a guinea-pig for an untried drug. The anti-spasticity medications I listed above are different from Valium (diazepam); you should not let your negative experience with previous medications put you off trying others to relieve your muscle spasms.
Forums created for individuals in similar circumstances may provide you with more feedback than this one.
If your views are too frank to be acceptable on those forums you could write your own uncensored blog.
Links which may be useful …
The Fibromyalgia Research Blog: The latest in Fibromyalgia research, news, and clinical trials.
http://fibroresearch.blogspot.com/search/label/clinical%20trials
National Fibromyalgia Research Association (USA)
http://www.nfra.net/
Questions and Answers About Fibromyalgia
By National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS)
http://counsellingresource.com/distress/chronic/fibromyalgia/fibromyalgia-qa.html
More treatments for spasticity are listed here …
http://en.wikipedia.org/wiki/Spasticity
PS
Unfortunately this study is in the USA but may give you some ideas...
Cognitive Behavioral Insomnia Therapy for Individuals With Fibromyalgia
This study is currently recruiting participants.
Verified by National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS)
The purpose of this study is to evaluate the effectiveness of cognitive behavioral insomnia therapy in reducing sleep disturbances and improving other FM-related symptoms.
http://clinicaltrials.gov/ct/gui/show/NCT00321451;jsessionid=7CEC7FE003038B778468A7D78C80444C?order=21
-
Thanks, RD. I will certainly explore with my own GP (on leave at present) some of the options that you have suggested, and recent experiences indicate to me an urgent need to review my medication situation.
However, to clear any misunderstandings, I'm not looking at present towards volunteering myself as a guinea pig for drug trails. To me, knowing considerably more of my medical history than has been revealed here to date, that would be an act of lunacy!
Helping the medical profession to better understand the nature of the condition, or similar, related conditions, the ups and downs, and effects on the daily life of someone with such, is an area that I may well be useful in. In fact, and to be fair to anyone reading this, I am being urged to attempt to do this by a number of other people. It is possible some may, in their own time, come forward here and reveal themselves. That will be up to them, but I have suggested they do so and as a result of private email correspondence that I've received.
One has mentioned the difference that one of the drugs that you mentioned has made to them, and we are exchanging an interesting dialogue, so even if there's not a great deal of feedback forthcoming, as yet, in this thread, some good is coming from it, which is encouraging.
Negative experiences with particular drugs won't put me off trying others, obviously with my doctor's approval and discussion. He freely admits (something I have great respect for him over) that he doesn't know how best to help me, or what to try next! Let's face it, it's not quite as straightforward as me asking for anti-biotics to treat a sinus infection or haemorrhoid ointment for piles. Lol
Regarding other forums and blogging, perhaps I should 'fess-up' a little more here - I do already write uncensored articles and blogs for specific groups or on other online forums. These pitched accordingly. I'm also one of a team of administrators for another website forum, albeit not science related, that does have a strong foundation dating back to psychological research carried out in the early 1970s.
I will certainly check out the links you have posted. Have those saved for when I am better placed to follow them up.
On a personal note, I finally managed to lie down without bringing on another series of spasms at 6 am this morning and slept until 8am when my helper called but she left me to sleep on through her activities until 10.30am.
Having attempted a bit of a detox last night using apple juice, and refrained from any caffeine intake, I had the anticipated withdrawal headache. Easily cured with a mug of tea.
When the district nurse came in to deal with the drain and dressings, I asked her to also check my BP and blood sugar levels. I am not diabetic, but after the severe FM/neurological pain, muscle spasms, perspiration loss, insomnia and minor vomitting of the last few days, suspected there was an imbalance. BP was 140/90 and blood sugar 4.9. Better than I expected, but I'm no doctor.
She questioned me and voiced concerns about my recent dietary intake - which I am aware wasn't ideal yesterday, consisting largely of fruit juice and raw veg/salad with a bit of cold quiche, and a beef sandwich. All at irregular times and snatched as and when able. Lol
At least I ate! During past flares of this intensity, that's not always been possible.
Today, I feel rational and am not aware of any fibro-fog; reasonably refreshed from the sleep achieved; but extremely sore and tender from the effects of the muscle spasms, and there is still some obvious spinal inflammation present in the C6 - T5 region. Ribcage feels as if I have done a few rounds in a boxing ring and as if wearing a tight corset! Lol
The only medication I have taken so far today is two x 300g soluable aspirins. Will be taking the penultimate Prednisilone corticosteroid dose of 3 x 5g tablets shortly. The key to recovery from this flare, TO ME, seems to be to deal with the inflammation and settle that down if possible.
NB: Just checked out this link, RD - http://clinicaltrials.gov/ct/gui/show/NCT00321451;jsessionid=7CEC7FE003038B778468A7D78C80444C?order=21 - will be interested to follow up on the results, although obviously don't qualify personally due to geographical location and other exclusion criteria.
Pity no studies are going on in the UK re. FM and the impact of surgery etc.
-
140/90 is what I think most doctors would say is just at the upper regions of normal....and I bet you that within 5 minutes it would have come down further. My BP is always up there too.....
Pomegranate juice is a wonderful detoxifier and green tea............drink green tea (with no milk)...it's wonderfully refreshing !!
Try to reduce your dairy products, drink semi-skimmed and cut down the red meat....eat little and often rather than just main meals....oily fish, red berries, green veg....and if you're going to drink juice...tray and drink freshly squeezed...and not from concentrate (Tropicana for instance)
...oh....and yes..........please do keep updating.
Hugs (gentle ones)
neil
-
If you do try the medications I have mentioned and feel they are not having any effect, they should be tapered-off over a week or longer, (like steroids), not stopped suddenly as this can temporarily increase spasticity, (a temporary withdrawal effect).
Your GPs should be able to advise you on this matter; they should have a copy of the BNF, (as should your local library) ...
It includes the BNF details medicines prescribed in the UK, with special reference to their uses, cautions, contraindications, side-effects, dosage and relative costs. Updated in print every six months, the BNF reflects current best practice as well as legal and professional guidelines relating to the use of medicines.
http://www.drugguides.co.uk/index.asp?details=957509&t=9790853697763+%26ndash%3B+British+National+Formulary+55&gclid=CM3etfmS9JMCFQuJ1QodyShGWg
-
RD…
Thanks for that, although from experience, I have learned the hard way to thoroughly familiarise myself with as much information as possible, including contra-indications, before taking anything prescribed nowadays.
On several occasions, I have queried things with the pharmacist or referred back to my doctor to confirm something - and been proven right to have done so. A few times, I’ve had to return a prescription to the chemist’s untouched. My reasons ranging from being unfamiliar with differences in generic and common names that, had I known them to be the same, could have alerted me at the time prescribed, to contra indications relating to medical conditions not yet mentioned here - e.g. allergies and allergy related asthma.
Having only recently (and accidentally) discovered some minor errors and queries in the district nurses information folder left here - these relating to my current medications and a reference that IBS was not detailed on their computer records - I decided to query these things. It appears that, when medical records are transferred from the old paper folders onto the new computerised systems, the people employed to enter the data are not medically trained, and therefore unfamiliar with the terms and significance of some information. It may not be significant to omit a diagnosis of IBS (made about 14 or 15 years ago) from my medical notes, but to record on a friend’s notes ‘Can take penicillin’ instead of ‘CANNOT take penicillin’… and you will soon see my drift.
The doctor was well aware I’d had IBS for years, but confirmed there was no record of it or when they’d first diagnosed it. Between us we came up with an approximate time that coincided with the early diagnosis of CFS and sero negative poly-arthropathy. (Circa 1993/4)
I’d be most interested to see how many other errors and omissions there might be, and that I can recognise in my own medical notes following computerisation. That if only to help ensure I’m not accidentally medicated with something lethal to me a little sooner than I might choose… and assuming choice to become possible in the UK before I naturally turn the toes up or whatever. (Having already survived a few near death experiences – e.g. walked away from a motorway RTA at 80mph; a couple of fires; falling tree 5’ behind my car etc… I know only too well how these ‘whatever’ things can happen.)
Neil…
I think 5 minutes probably wouldn’t have made much difference at present, but perhaps a little further away from this flare and if I can follow some of your dietary suggestions, there’s certainly potential for improvement.
To show willing, I have managed to search the shelves of the local village store and acquired a litre of pomegranate smoothie, which includes blueberries and acai – all natural and no additives. That is described as a natural detox on the carton, but the only thing resembling what you describe. I was amazed to even find that locally.
I may need to be a little bit careful and try experimenting with the green tea. I’ve tried a few herbal teas and with mixed results. Unfortunately, I can’t recall the ones that proved anything but refreshing for me! Lol (I do recall a 60s party where the contents of dried herbal tea bags were being turned into spliffs though… ;) Could this mean my memory is experiencing restoration?)
I already have semi-skimmed milk on a regular basis, even skimmed on occasions when semi-skimmed in out of stock.
Can up the red berries as they come into season and if I can beat the birds to them, also increase the green veg, but have to be careful with things like cabbage, sprouts etc., and the IBS.
Red meat is a failing of mine, but I do enjoy tuna, salmon, various white fish and other seafoods, and eat those regularly.
If anyone here IS looking to test healthy dietary things and needs a subject for a case study, and think I might be useful for this purpose, then I am more than willing to assist. I don’t even mind posting my (not so vital) statistics openly on this forum. Lol (Although think I’d prefer to avoid posting any ‘before’ and ‘after’ photos, and most others would probably prefer that too!)
Having already said I have a weight(y) problem to address, I don’t mind openly discussing that here, if anyone has any questions. No embarrassment on my part there. No worries about openly revealing my age, sex, height, weight etc. and dealing with emotions IS my main area of expertise, so I am quite at home on that front.
In about three weeks I’ll be seeing the oncologist and have a better idea of what my follow-up cancer treatments will involve. I am sure there will be people here who have far more knowledge of that that I have, but it would make sense to me to have a good, healthy eating plan prepared and in place prior to any chemo cycles commencing. Pre-op my weight was 196 lbs (14st). If the batteries hadn’t packed up in my scales I could give you an update on that now, but it will have to wait until Monday, when I can replace the batteries. Those scales will also detail the BMI and various other things, too, should anyone want those things, and explore my case further, as it relates to diet.
-
Ok have read your posts and now have an understanding of what it is you are up against and if you feel like joining our study into varicose veins and pressure changes in blood pressure, you might find a lot more than may be obvious at first glance.
Have you had an epidural at any time?
Stay away from the pomegranate juice as it is a very powerful oestrogen loaded drink that will play havoc with your other problems.
IBT will give you the leverage to rapidly detox s it increases urine density markedly over flat bedrest and daily activity.
And with your psychology background you may be able to give an accurate description of changes, so please make a note of anything which we can reflect upon down the road to some significant recovery.
Please feel free to google "andrew K fletcher" and "inclined bed therapy" to learn a little more about myself and my research which I am sure you will find very interesting.
Thank you for your kind offer to monitor your varicose veins also as this will prove very useful in say 4 weeks from when you tilt your bed. I say bed because when the bed is tilted it will be far more beneficial than sleeping on the couch. The dogs will love it also :) If you could take discrete photographs of the veins you are monitoring so we can see a before and after it would prove very useful, if not don’t worry about it.
Kind regards Andrew
Andrew
-
Thanks for your response, Andrew.
After reading yours re. IBT I had a feeling that I might well discover more than the obvious. However, I am afraid we'll have to go with the sofa and not a bed. I have done a fair bit of experimenting over the years, and even an orthopaedic bed plays havoc with my spine. It was only when a friend gave me my present sofa, that I made the chance discovery that, on it, and when not experiencing a flare, I could, on occasions, achieve between 6 and 8 hours restorative sleep! I believe that has to do with the angle of the seat and the support the back of it affords me, together with preventing certain movements during the periods of unconsciousness. Perhaps, by being supported in this way, and the position that I adopt, it relieves pressure on particular nerves caused by arthritic damage/wear and tear to my spine, thus enabling undisturbed sleep?
During my first hospital stay, I was given an orthopaedic bed, and, despite this, within minutes of lying down on that on my side, the first muscle spasm of this latest flare kicked in. I'd not had any for several weeks prior to that. Since then, those have been escalating in frequency and intensity, as have the FM related symptoms. My last muscle spasm was approximately 21 hours ago, although I am aware that there is still some inflammation present in the affected region, the heat and swelling that was in evidence there has considerably reduced now. I have now taken 5 of the 6 doses of the corticosteroid course, and just the two aspirins mentioned earlier. No other form of medication at all since last night when I felt it best to attempt the apple juice detox. My system seems to be telling me it is short of something mineral related, and I was craving something salty earlier, so had a small bag of crisps. That craving disappeared soon after, but for some reason I have it in my head that I may be short of magnesium, although where that idea has come from I don't know. The subconscious, perhaps? Something I have read somewhere and forgotten?
I am feeling very mentally alert at present, despite so little sleep, and despite my eye muscles being noticeably tired. It is my intention to take 2 x 300g aspirins shortly and before attempting any sleep. This due to mild to moderate pain resulting from so many spasms of late and my ribs not having recovered from those, and to get some into my system to further tackle the residue of inflammation. These MIGHT have had some impact upon the discharge from the drain that I still have in situ from the last op, as the amount of that discharge has increased slightly. (It was 40ml when the district nurse changed the bag last time. It is now 40 ml, so likely to rise further before the next change is due.) I suspected it might have that effect when I took the previous two aspirins, but felt it the lesser of the evils available in my 'pharmacy', after yesterday!
I will again ask the district nurse to check my BP etc. when she calls in the morning, and on Monday can pick up some means of monitoring that myself for the purpose of the study. Will also ask my son to raise the end of the sofa. :) (It's actually a sofa bed but I do need the back up.)
Have you had an epidural at any time?
- No, not to my knowledge.
Stay away from the pomegranate juice as it is a very powerful oestrogen loaded drink that will play havoc with your other problems.
- Glad you warned me about that, thanks. (Had quite fancied trying it, though. Not to worry.)
IBT will give you the leverage to rapidly detox s it increases urine density markedly over flat bedrest and daily activity.
This certainly interests me, and I am often aware of some degree of oedema in my ankle/calf regions towards evenings/nights.
And with your psychology background you may be able to give an accurate description of changes, so please make a note of anything which we can reflect upon down the road to some significant recovery.
Do you have a specific questionnaire or preferred format for recording changes, please? If so, feel free to email or PM that to me, so that I can conform to it.
Will certainly google you, thanks, and I believe you are correct and I will find it interesting. :)
Thank you for your kind offer to monitor your varicose veins also as this will prove very useful in say 4 weeks from when you tilt your bed. I say bed because when the bed is tilted it will be far more beneficial than sleeping on the couch. The dogs will love it also :) If you could take discrete photographs of the veins you are monitoring so we can see a before and after it would prove very useful, if not don't worry about it.
You are welcome, Andrew, and thank you for allowing me to participate. Hopefully, we will both gain something from this? I will see what I can do to get photographs of the leg veins. Tried earlier, but the flash in this artificial light just burned the images out. Will likely need to arrange something in daylight and with someone else holding the camera. As for the haemorrhoid's... perhaps just a report on any improvement in those will suffice, eh? Lol
-
the flash in this artificial light just burned the images out.
Putting sheets of white tissue paper over the flash to reduce its output should prevent the close-up images from being "burned-out" (overexposed), several layers may be required. Toilet, kitchen, typing & greaseproof papers can also be used in this way.
-
:D - Thanks, RD. I'd never have thought of that, and so obvious now that you've mentioned it. It's a tip that I can pass on to someone asking about the same thing on another forum, too. ;)
I think I'll first try the outside, daylight option, though... Now where did I put, or last see, my shorts? Lol
As a quick update, it's just gone 4.12 am and I am still far too mentally alert to consider an attempt to lie down and sleep, but no further muscle spasms to report, thank God. For me, often less medication brings more relief, but I do still feel that I need to go and take those two aspirins mentioned earlier now.
First, though, I'd like to thank those who have responded here in this thread and also those who have contacted me privately, either here, by email, or on other forums, having learned of this thread's existence.
Many of the questions asked privately have been asked several times, and are not things that I've any objection to answering openly in this thread. Indeed, it would probably help me to do so, as answering numerous individual messages takes time, as I am sure you all appreciate.
Please, if you have questions, consider posting them in the thread. IF there should be anything that I consider too personal to respond to openly, then I will say so and contact you privately with a response. However, in the interests of science and research, my preferred option would be to keep things in the open and inclusive of any issues that reading this thread may have raised or inspired.
Thanks. :)
-
Inclined Bed Therapy (IBT) works by assisting the circulation and preventing stagnating in areas that are prone to circulatory failure particularly the toes and fingers.
Toenails have been reported by a number of people to shed, particularly nails that are not in good condition. This is then followed by a new nail that is healthier. For example. I used to have a split thumb nail right down to the nail bed. This used to rip of and was very troublesome. It healed up! So take clippings of hair and nails and put a date on them. I found this fascinating as there appears to be some changes in colour and general condition. Body hair for example no longer falls out and requires trimming. Hair on the head also appears to benefit, though I have not recovered from being bald, I have however observed increases in hair and a reduction in hair falling out. Again this may be due to circulation improving to the follicles.
Eyesight: get a check up if possible as this may well change over 4-6 months of IBT.
IBT also places the body in gentle traction because the body is trying to move down the bed, but is resisted by the friction between you and the mattress. Decompressing the spine will enable repairs to take place between the joints, assisted again by improvements to the circulation that should re-hydrate the cushions between the vertebrae. Again something observed by a number of people who found relief from arthritic problems and neurological damage. Having the feet against a foot board or the arm of your sofa will do the opposite and compress the spine and posibly cause circulation in the feet to be comprimised, which is why I suggest tilting the bed.
Spasm in spinal cord injury was shown to increase in some cases and decrease in other cases. Usually after an increase in spasm there was a lull followed by some recovery of function, though the medical profession would still label this as a mere coincidence even though it was reported again by several people with complete spinal cord injury dating back to 28 years post injury with no recovery prior to IBT in one case. 2 cases where 2 years post injury again (complete) Their case histories are published on the Carecure Forum and duly ignored by everyone J
http://sci.rutgers.edu/forum/showthread.php?t=17404
There is a lot of compelling evidence for IBT on this forum and a lot of idiots who believe having a spinal cord injury automatically makes them an expert. Perhaps you can understand their reasoning that this can’t possibly work for a complete and incomplete SCI when people they have communicated with for years begin reporting that it does and then they lock the thread. Never been able to figure that out.
Contraindications of IBT.
Be aware that IBT increases the uptake of drugs, so you may find that reducing the level of medication in the coming weeks could prove helpful. Parkinson’s disease for example, we found a ¼ of the prescribed LD had the same effect as the full dose without IBT. Possibly due to increased uptake but also possible that the brain started to produce natural dopamine, though a thorough investigation into this would be required in order to establish what is going on in PD.
As for your problem with Cancer, it pains me to tell you that I could not save my own father even though I got him an extra 8 months of good life by challenging the doctor who told us his demise would be rapid and there was nothing they could do because the tumour was pressing on the tubes to his gall bladder. They eventually put a stent in to relieve the pressure and bought him the precious 8 months to which we are very grateful for. But then again, I could not get Dad to try anything alternative, not even to drink filtered water.
During my extensive research into trying to find a way to help dad fight the big C. I found some interesting reports on alternatives, although Dad refused to listen and trusted the people who gave him metformin, which I am convinced caused the cancers, even though he did not have diabetes. (they said it was just in case he did get it?)
Some of what interested me.
http://www.project-aware.org/Managing/Hrt/progesterone_FAQ.shtml This my wife has used to great affect with helping to reduce the problems with uterine fibroids. Look into this if you have not already done so. Avoid anything with parabans in it. Look at all of your toiletries and throw out anything with parabans in it.
The best detox in the world is asparagus. We buy the frozen asparagus (freezer is full of it and we love the stuff.) Makes your pee stink to high heaven in 30 minutes after eating it. We even drink the water it is boiled in or add it to the gravy on a dinner.
Asparagus
Several years ago, I had a man seeking asparagus for a friend who had cancer. He gave me a photocopied copy of an article, entitled, `Asparagus for cancer' printed in Cancer News Journal, December 1979. I will share it here, just as it was shared with me:
"I am a biochemist, and have specialised in the relation of diet to health for over 50 years. Several years ago, I learned of the discovery of Richard R. Vensal, D.D.S. that asparagus might cure cancer. Since then, I have worked with him on his project, and we have accumulated a number of favourable case histories. Here are a few examples.
Case No. 1, man with an almost hopeless case of Hodgkin's disease (cancer of the lymph glands) who was completely incapacitated. Within 1 year of starting the asparagus therapy, his doctors were unable to detect any signs of cancer, and he was back on a schedule of strenuous exercise.
Case No. 2, a successful businessman 68 years old who suffered from cancer of the bladder for 16 years. After years of medical treatments, including radiation without improvement, he went on asparagus. Within 3 months, examinations revealed that his bladder tumour had disappeared and that his kidneys were normal.
Case No. 3, a man who had lung cancer. On March 5th 1971 he was put on the operating table where they found lung cancer so widely spread that it was inoperable. The surgeon sewed him up and declared his case hopeless. On April 5th he heard about the asparagus therapy and immediately started taking it. By August, x-ray pictures revealed that all signs of the cancer had disappeared. He is back at his regular business routine.
Case No. 4, a woman who was troubled for a number of years with skin cancer. She finally developed different skin cancers which were diagnosed by a skin specialist as advanced. Within 3 months after starting on asparagus, her skin specialist said that her skin looked fine and no more skin lesions. This woman reported that the asparagus therapy also cured her kidney disease, which started in 1949. She had over 10 operations for kidney stones, and was receiving government disability payments for an inoperable, terminal, kidney condition. She attributes the cure of this kidney trouble entirely to the asparagus.
I was not surprised at this result, as `The elements of materia medica', edited in 1854 by a Professor at the University of Pennsylvania, stated that asparagus was used as a popular remedy for kidney stones. He even referred to experiments, in 1739, on the power of asparagus in dissolving stones. We would have other case histories but the medical establishment has interfered with our obtaining some of the records. I am therefore appealing to readers to spread this good news and help us to gather a large number of case histories that will overwhelm the medical skeptics about this unbelievably simple and natural remedy.
For the treatment, asparagus should be cooked before using, and therefore canned asparagus is just as good as fresh. I have corresponded with the two leading canners of asparagus, Giant Giant and Stokely, and I am satisfied that these brands contain no pesticides or preservatives. Place the cooked asparagus in a blender and liquefy to make a puree, and store in the refrigerator. Give the patient 4 full tablespoons twice daily, morning and evening. Patients usually show some improvement in from 2-4 weeks. It can be diluted with water and used as a cold or hot drink. This suggested dosage is based on present experience, but certainly larger amounts can do no harm and may be needed in some cases.
As a biochemist I am convinced of the old saying that `what cures can prevent'. Based on this theory, my wife and I have been using asparagus puree as a beverage with our meals. We take 2 tablespoons diluted in water to suit our taste with breakfast and with dinner. I take mine hot and my wife prefers hers cold. For years we have made it a practice to have blood surveys taken as part of our regular checkups.
The last blood survey, taken by a medical doctor who specialises in the nutritional approach to health, showed substantial improvements in all categories over the last one, and we can attribute these improvements to nothing but the asparagus drink. As a biochemist, I have made an extensive study of all aspects of cancer, and all of the proposed cures. As a result, I am convinced that asparagus fits in better with the latest theories about cancer.
Asparagus contains a good supply of protein called histones, which are believed to be active in controlling cell growth. For that reason, I believe asparagus can be said to contain a substance that I call cell growth normaliser. That accounts for its action on cancer and in acting as a general body tonic. In any event, regardless of theory, asparagus used as we suggest, is a harmless substance. The FDA cannot prevent you from using it and it may do you much good." It has been reported by the US National Cancer Institute, that asparagus is the highest tested food containing glutathione, which is considered one of the body's most potent anticarcinogens and antioxidants.
-
Sorry, this is going to be long, even though I've only just joined this minute...
Helping the medical profession to better understand the nature of the condition, or similar, related conditions, the ups and downs, and effects on the daily life of someone with such, is an area that I may well be useful in.
I would certainly find this very interesting. Even with my – in comparison – ‘minor’ and indefinitely better known type of health problems (several prolapsed discs), I found that only one single consultant had ANY idea what it is like to live with day by day, not being able to sit, hardly able to walk, feeling like being of no use to anything or anybody and even being made out to be more or less of a hypochondriac. The GPs I’ve been seeing were (and actually are) exceedingly unhelpful and clueless. (I'm quite ok now after discectomy - the above is my experience from 'before')
In fact, and to be fair to anyone reading this, I am being urged to attempt to do this by a number of other people. It is possible some may, in their own time, come forward here and reveal themselves. That will be up to them, but I have suggested they do so and as a result of private email correspondence that I've received.
One has mentioned the difference that one of the drugs that you mentioned has made to them, and we are exchanging an interesting dialogue, so even if there's not a great deal of feedback forthcoming, as yet, in this thread, some good is coming from it, which is encouraging.
One of them is me! I’m not sure which, one particular prolapsed disc or the discectomy, has left me with permanent nerve damage, presenting as tics in my left foot, “escalating” into nerve cramps/”electricity shoots” (a less painful – but still painful - version of the old dragon’s “cattle prod”) in the whole leg. With this, I had for ages the same problem as the old dragon – the doctors did not understand what I was talking about. When it first presented straight after spinal surgery (still in the waking-up-unit) I was being told it’s due to panic attacks and they wouldn’t believe me that until they started I was feeling absolutely fine. It just suddenly started. Anyway, to cut a very long story short, in the end, after nearly a year of having these tics and cramps about once an hour – i.e. not a single night’s sleep undisturbed, the doctors telling me to eat more bananas etc not believing that it was NOT “simple” muscle cramps - I eventually resorted to writing a letter to the management of the RUH, with copies to every single doctor I’d ever had to deal with in connection with my spinal problems … and lo and behold, I had an appointment with the pain clinic within 3 days (of posting the letter!!!), the brilliant and lovely and great female consultant there (oh no, I’m not biased ;-))) actually KNEW what I was talking about and prescribed Gabapentin (see RD's comments), which has really been helping me (I’m on 8 a day). It does not seem to have made the IBS any worse nor made my tendency to be mildly depressed (which has nothing as such to do with the spine - had that before) any worse either.
A couple of questions for Andrew:
Have you had an epidural at any time?
Why do you ask that in this connection? (I’m asking because I’ve had 2 or 3 epidurals for my back)
Stay away from the pomegranate juice as it is a very powerful oestrogen loaded drink that will play havoc with your other problems.
I have no idea if this bears any relation to the subject in hand – but this is a quote from an email I sent to the old dragon this morning:
The old leg is playing up at the moment despite the Gabapentin. It does that once a month, just before the period. Very strange, but it's been happening ever since! So I was wondering last night in bed whether maybe somewhere your hormones are in a bit of "disarray"? Might be a totally stupid thought, but hey, who knows!
Is there a recognised link 'hormones to pain' as well or “just” to the fibromyalgia or IBS etc.?
To the old dragon:
I have it in my head that I may be short of magnesium, although where that idea has come from I don't know
Magnesium is used to alleviate cramps in muscles/feeds muscles – so I wouldn’t be at all surprised if your muscles crave for magnesium after all the spasm!
(Even though I work for the NHS, I'm neither a doctor nor a scientist (I'm not British either, hence my English possibly being a bit weird), so please excuse any 'stupid' questions or using wrong words)
Yay - at last a good reason to convince the other half to get asparagus- and loads of it!! I LOVE asparagus, but he doesn't....
Off to find out more about IBT...
-
Arachnoiditis is a neuropathic disease caused by the inflammation of the arachnoid, one of the membranes that surround and protect the nerves of the central nervous system, including the brain and spinal cord. The arachnoid can become severely inflamed because of adverse reactions to chemicals and/or steroids, infection from bacteria or viruses, as the result of direct injury to the spine, chronic compression of spinal nerves, or complications from spinal surgery or other invasive spinal procedures. Inflammation can sometimes lead to the formation of scar tissue and adhesions which can cause the spinal nerves to "stick" together.
Epidurals cause this horrific condition. So some of your pain could be from past epidurals. It always puzzles me that people who have no idea how cerbrospinal fluid circulates through the body inject steroids and other chemicals into it without taking into account the fact that a difference in density to the spinal fluid can cause pressure changes and even stagnate the flow and that is not due to the inevitable chemical reactions from the injection but from the effects of the solutes in the fluids.
An underestimated powerful pain killer is stinging nettles. Nettle tea is also a powerful detox agent and full of iron. the sting from the nettle can also act directly on an affected area. Frozen shoulder for example completely resolved when a lady fell into nettles. But asside from this the tea tastes lovely and is very refreshing.
-
Thank you!
(I don't think I have Arachnoiditis)
-
But I'll try the nettle stings next time my back plays up - have enough of them on our field!
How is nettle tea made? We keep wanting to try it out as we're trying to use most of the "wild" plants we have anyway.
-
You need to brew the whole plant with some root and stem as there are sterols and natural steroids, histamines and loads more some of which are not found in the leaves. Commercially made nettle tea contains the whole plant and can be ontained from health shops. Drying the nettles first gives the tea a cleaner taste but at the loss of some of the health benefits. It helps prevent period pains and reduces bleeding also.
-
Thank you, Andrew!! I'll try that! (I suppose brewing for 10 minutes?)
Anybody with any ideas re this?
Code:
Stay away from the pomegranate juice as it is a very powerful oestrogen loaded drink that will play havoc with your other problems
.
I have no idea if this bears any relation to the subject in hand – but this is a quote from an email I sent to the old dragon this morning:
The old leg is playing up at the moment despite the Gabapentin. It does that once a month, just before the period. Very strange, but it's been happening ever since! So I was wondering last night in bed whether maybe somewhere your hormones are in a bit of "disarray"? Might be a totally stupid thought, but hey, who knows!
Is there a recognised link 'hormones to pain' as well or “just” to the fibromyalgia or IBS etc.?
-
LOL - When it comes to long posts, I can hardly point a finger at you, now can I, GOM? ;)
Andrew...
I am going to print out a large print version of your post in a minute, and take my time going through it. My eye muscles are still tired after it's only been possible to get another four house sleep and from gone 6am until my helper's husband telephone to try and wake me in time for the district nurse's visit. (My helper was worried sick, as she failed to wake me at all when here from 8 - 10 am.) Phone penetrated as far as the reptilian brain (archipallium) and just about reached the paleomammallian level by the time I answered. (Powerless over the first thought, but not over the second!) Thankfully, the neomammalian rationale surfaced before the tongue lashed!
Whatever, even through the p-holes in the snow, a LOT of things are leaping out at me from your post. Doing justice to any reply will take time - and probably a few more hours sleep, too. I am not fibro-fogged YET, but am not sufficiently alert to do justice to responding to your post at present - but I will be.
No more muscle spasms to report yet, either, but there was 100ml of discharge in the drain when it was changes, but the district nurse (a fellow fibro sufferer) forgave me and understood why only too well when I explained what I'd done. :) Stuck with the drain for at least another two days, though. Small price to pay to be free of those spasms!
Grumpy Old Mare...
Thanks for coming out into to open here.
Could it be that your challenge team's shaman's missing right arm is responsible for pulling your extra left leg? He is certainly helping to keep me awake with his mind games on the TRPD forum!
For the benefit of others here, this is copied and pasted from my reply to the Grumpy Old Mare's PM to me about the possible hormone connection...
Good point about the hormones, and possibly one worth you posting in that Naked Scientists thread, too. I have learned that, ref. the cancer, I am hormone receptive, therefore will be having the anti-hormone drug treatment in combination with chemo and probably radiotherapy. However, I had a hysterectomy in 1991, when they also removed my left ovary, leaving the right, which, apparently, now has cysts. Presumably unruptured egg follicles? That was left so that the hormones would help to delay any onset of osteoporosis.
I mentioned this recently to the cancer specialist nurse and the doctor, and was told it probably wasn't working now anyway.[/b]
Before I can take my replies further, I really do need to rest both my eyes and brain(s) now. I might even end up sleeping the clock around, which often happens after a really bad flare, so don't anyone worry if the old dragon appears to be in hibernation. She's just away with the dogs on the sofa... Yes, I know, barking mad. :)
(A bit like the spell-check on here, it seems... clearly lacks education... How the heck IS 'unruptured' spelled, please? It sure as heck isn't an enraptured egg follicle in that condition!)
Grumpy Old Mare - just realised that your team mate's gonna get another win as soon as I hit the 'Post' button... But I am too tired now to care let alone explain... 'Enraptured Egg Follicles Challenge' my aging... donkey! Let your extra leg explain that one. ;)
-
Thank you, Andrew!! I'll try that! (I suppose brewing for 10 minutes?)
Anybody with any ideas re this?
http://www.woodlands.co.uk/blog/practical-guides/a-cup-of-nettle-tea/
Interesting video here also
http://www.vortexhealth.net/stinging_nettle.html For an in depth analysis of the properties of stinging nettles
-
Stinging nettles have long been a treatment known in folk medicine and I can recall witnessing travelling people (Romany and Irish) using them on themselves and others back in the 60s and 70s when I spent time doing seasonal work on farms fruit picking. A colleague has a very old journal that has been handed down through many generations, and that details, amongst other things, the use of a nettle poultice for what we believe refers to gout.
Yes, I know I am supposed to be sleeping, but was blasted into a state of alertness by the knowledge that a challenge opponent pal of Grumpy Old Mare's has blown a fuse... or three along with a work's computer! pmsl
Andrew, can you tell me what brain chemical/s production in me could have been boosted by this as a stimuli, please? Also, what can I do to damp them or it down, please?
I feel as if I've taken something akin to speed, yet had nothing - not even any tea since the one mug this morning. Mentally wide awake again, but my body is wrecked and crying out for sleep/rest. Just going to have a glass of apple juice and try some meditation to bring me down enough to sleep.
-
LOL - When it comes to long posts, I can hardly point a finger at you, now can I, GOM? ;)
Andrew...
I am going to print out a large print version of your post in a minute, and take my time going through it. My eye muscles are still tired after it's only been possible to get another four house sleep and from gone 6am until my helper's husband telephone to try and wake me in time for the district nurse's visit. (My helper was worried sick, as she failed to wake me at all when here from 8 - 10 am.) Phone penetrated as far as the reptilian brain (archipallium) and just about reached the paleomammallian level by the time I answered. (Powerless over the first thought, but not over the second!) Thankfully, the neomammalian rationale surfaced before the tongue lashed!
Whatever, even through the p-holes in the snow, a LOT of things are leaping out at me from your post. Doing justice to any reply will take time - and probably a few more hours sleep, too. I am not fibro-fogged YET, but am not sufficiently alert to do justice to responding to your post at present - but I will be.
No more muscle spasms to report yet, either, but there was 100ml of discharge in the drain when it was changes, but the district nurse (a fellow fibro sufferer) forgave me and understood why only too well when I explained what I'd done. :) Stuck with the drain for at least another two days, though. Small price to pay to be free of those spasms!
Grumpy Old Mare...
Thanks for coming out into to open here.
Could it be that your challenge team's shaman's missing right arm is responsible for pulling your extra left leg? He is certainly helping to keep me awake with his mind games on the TRPD forum!
For the benefit of others here, this is copied and pasted from my reply to the Grumpy Old Mare's PM to me about the possible hormone connection...
Good point about the hormones, and possibly one worth you posting in that Naked Scientists thread, too. I have learned that, ref. the cancer, I am hormone receptive, therefore will be having the anti-hormone drug treatment in combination with chemo and probably radiotherapy. However, I had a hysterectomy in 1991, when they also removed my left ovary, leaving the right, which, apparently, now has cysts. Presumably unruptured egg follicles? That was left so that the hormones would help to delay any onset of osteoporosis.
I mentioned this recently to the cancer specialist nurse and the doctor, and was told it probably wasn't working now anyway.[/b]
Before I can take my replies further, I really do need to rest both my eyes and brain(s) now. I might even end up sleeping the clock around, which often happens after a really bad flare, so don't anyone worry if the old dragon appears to be in hibernation. She's just away with the dogs on the sofa... Yes, I know, barking mad. :)
(A bit like the spell-check on here, it seems... clearly lacks education... How the heck IS 'unruptured' spelled, please? It sure as heck isn't an enraptured egg follicle in that condition!)
Grumpy Old Mare - just realised that your team mate's gonna get another win as soon as I hit the 'Post' button... But I am too tired now to care let alone explain... 'Enraptured Egg Follicles Challenge' my aging... donkey! Let your extra leg explain that one. ;)
You are right about spell check it really needs help and updating! LOL
I have a question about the pomegranate juice. A friend of mine is drinking it also in hopes she will receive some benefits... what kind of troubles specifically did you run into.. if you have time or energy to post back? Thank you and hope you get some relief soon.
-
Karen, as far as I know Al (Old Dragon) has not been taking pomegranate juice. Andrew would be the person to ask about its significance.
I can find the unopened carton of it that Al mentioned buying in the fridge. Would have been tempted to drink it until I read what Andrew said... Don't fancy developing man-boobs, so come on Andrew, let's have more information on this. What is the significance to both males and females if they partake of this stuff?
There's a hell of a lot of information in this thread already. How about some ideas about which supermarket chains stock frozen asparagus? I happen to know Al loves the stuff, and yet whenever she tries to grow it, it fails in her soil.
Spell check nearly got me again! Man-boobs nearly became nabobs??? Could make a game out of this... Oh, I forgot! We already are.
For anyone interested, the Old Dragon's still comatose but snoring well. ;) One dog keeping the backs of her legs warm, another keeping her back pushed against the back of her sofa by lying in front of her chest.
Brings a whole new meaning to the term '3 in a bed'. ;) Perhaps this is why she keeps rejecting me... Three's company, four a crowd, and especially on a sofa.
Anyone know what time she crashed out? Just wondering how much longer I need to dragon-sit without nodding off myself? Time for a caffeine fix, I think.
-
Her last post was 15/06/2008 22:36:32
-
Regaurding this..
Old dragon
"I have quite a complex medical history that includes spinal damage; fibromyalgia and recently diagnosed breast cancer - oh, and I need to lose around 4 stones to aid mobility but without that impacting on pending chemotherapy (following lumpectomy and full lymph node axillary clearance) and fibro associated IBS sensitivities."
I would be very interested in hearing what you are trying to do for the weight. I am in a medical situation where my mobility is very restricted and yet I need to loose a lot of weight to get myself in better shape for surgical repairs to happen on my heart... I have a great deal of trouble walking 30 ft without becoming nauseated and going into dry heaves and having my blood pressure drop down to dangerous levels.. May I ask you if you have some things that work for you to keep you mobile and burning calories?
My emotions get the best of me and I find it quite hard to deal with all the problems that have bombarded my body .. I have many different physical problems ongoing at the same time as you..I have CFS and serious heart problems .. infections etc..
Your input would be very helpful and appreciated.. My best to you and many good wishes and strength sent your way.
Karen
-
A friend of mine is drinking it also in hopes she will receive some benefits... what kind of troubles specifically did you run into..
I'd still really be interested re the hormonal stuff, too, as posted above...
-
Hi Karen, the fact of the matter re. my weight is I'm struggling with it, too.
I need to replace the batteries in my scales later today and once the nurse has been here (and the scent of a certain BIG PUSSCAT clears from the air, and who will be reduced to CAT GUT when I get hold of him ;)) but I'll weigh myself then and let you know if I've managed to reduce it from the 196lbs pre-op. If so, then it probably will be due to the pain/sweating/spasms etc., rather than diet or other forms of exercise.
There's a thread around here about thinking and weight loss that I have read, though, and the amount I have been doing lately should have pulled a tiny bit off! Diet-wise, I've been picking, but mostly fruit and veg/salads, tuna, cereals and the odd lapse into a bit of quiche and a good old beefy sandwich.
The challenges that I've been playing help to burn calories, but those can wreck my sleep patterns as much as the FM can. The chap that plays these games on Grumpy Old Mare's team as 'the Shaman' for the team is a wiry fellow who eats more than a herd of pigs and yet never seems to go over ten stones! How I envy him! Wish I had that metabolism nowadays, although there was a time when I was active and eating like a horse that I looked more like someone with anorexia and was struggling to stay over 8st. Of course, I was a lot younger then. However, at 5'6" tall and large boned, 10 st would be a realistic and healthier weight for me that around the 14 st that I was last time I was weighed in the hospital.
Perhaps there are people - experts - on here who could look into these aspects that affect those of us in our position? It could have a significant benefit to the NHS, as well as many other people in similar positions.
I can see that I've an awful lot of reading to catch up on. Work here for my voluntary job, too. Why are there never enough hours in a day and why does so much happen when one is sleeping? (But I see I've won a a very tasty challenge over on the Triune board, and so effortlessly, too.) I am going to have a lot of fun there. Roll on the Panto Dame with the shears... Off to skin a Wildcat. ;) That having had the rest, now I need the work and the play side of things. (Work being the therapeutic variety and nothing more strenuous than packing parcels and making a few things on a sewing machine.) The play is the brain fodder that helps to keep me positive when surrounded by negativity - but it does burn energy, and as Grumpy Old Mare says (possibly on the Triune forum, not here) it can be like an overloaded computer at times and fry one's brain! Heck of an adrenaline rush, too, which takes it's toll on bodies that are already compromised. I must be mad, but have issued a challenge to the Shaman this morning, and for the Solstice night, too! Lol Nothing like going for gold and all sheets to the wind!
-
I have been unable to move sufficiently enough to keep the weight off. I have been in bed pretty much most of the last year and have gained 22+ pounds.. I just got my treadmill back up and am making efforts to walk on there several times a day even if its only for 5 minutes a shot if I make it that far.. some days its doable... Some days its not! I get winded very quickly and get sick and pass out if I am not careful.. I just started a couple Asthma inhalers to open up my bronchial tubes because my air way has shrunk and is giving me the business. They are helping me to breath better and to get the fluid up out of my lungs. This in turn is helping me to walk some further and to move around more without collapsing.
Are there any exercises you use to help you that are pretty easily accomplished.. I find trying to make the bed very difficult.. by the time I am done the bed is ready for my collapse and I do.. takes me ten to 15 minutes just to get my breathing back to a semi normal state and get cooled off. Its crazy.
I have had to quit my job due to this and have very little energy to play but I am trying anyway.. I miss my life... so any tips on continuing to live with a good mindset are welcome...
Its nice meeting you and I think your input here will be very much appreciated.. you seem so well adjusted to the circumstances .. and I am not.. I need tips.. I get so frustrated...
-
http://www.health-science.com/breast_cancer.html
Oestrogen is well documented to influence the growth of certain cancers, breast cancer is one of these. Natural Progesterone on the other hand has been shown to inhibit the growth and destroy the cells through apoptosis.
http://www.health-science.com/breast_cancer.html
The receptors occupied by natural progesterone from what I have read prevent the oestrogen from linking to the same receptors. So it follows that high oestrogen levels can alter the cells adversely and reducing the oestrogen levels can do the reverse.
Uterine fibroids, which is what we used this logic to address appear to respond to reducing the oestrogen levels and increasing the progesterone levels, just as John Lee M.D said it would. We have taken care to avoid oestrogen rich foods and therefore pomegranate is a known phyto-oestrogen so logically we avoided it. However, there are many reports saying the reverse, yet I have not found case histories, whereas I did find case histories with the natural progesterone.
Fibroids also vanish when post menopause and post menopause starves the body of oestrogen and increases progesterone.
Oestrogen hormone replacement therapy has been indicated to increase the risk of breast cancer.
Farm Fresh Foods for asparagus 0.89p for a portion with no waste and around 2x larger than the fresh portions.
-
Karen, I can certainly empathise with you and the restrictions that health conditions impose. I get good days and bad, and at all positions along the see-saw! Some days I can manage to walk as far as the horses field and back, if I take things steadily, other days I'm struggling to get from here to the bathroom, which is on the ground floor. When mobile, I can get upstairs, but coming down can be more of a challenge.
Today I am feeling good. Managed to do some of the stretching exercises given me by a physiotherapist, but can't yet get the full range with my left arm. I just do these slowly and gently but repeat them a couple of times an hour when at the PC. Sometimes I can hear the joints cracking out loud. I do similar things with my legs, too.
I don't need either of my inhalers at the moment, but will once there's more grass pollen around. Tree pollen's over now for this year, thank goodness.
There is a challenge on now for charity and part of that involves the members guessing my weight and that of my opponent, so I can't post that here yet, but I will say that I had a shock when they weighed me at the chemists today. I went in for batteries for m scales but they had none, but stepped in as there's this charity challenge involved. They have a little consulting room there.
I also got a great deal on a blood pressure monitor, so I am just waiting for my son to get me a lump of wood and incline my sofa - and find my shorts so that I can expose my varicose veins - and I'll be ready to go for the trail that Andrew is doing. I look on that as a positive challenge and in a similar way to lots of others I do, it's just for a different reason or cause. Might as well do something that I can do instead of sitting around thinking about the things I can't. I also belong to various other groups where I can get involved, and have interests in common. Okay, so many are online now, but it doesn't matter. It gets me out of dwelling in me, even if not always out of the house. What I lack physically now, I try and make up for with mental agility games that are of the nature I can manage easily - then push myself to tackle the next player and so on. It doesn't have to cost anything, but usually those of us who play put up some small stake for a good cause, and feel better for doing that. I usually make things, and there are others involved who even use off-cuts from what I make to produce things like cat toys to send to cat rescues. We have lots of fun doing in, feel better for doing so, it involves others too, and we pass on the benefit to something we want to support. All are winners, and that's positive. Another of the groups I belong to supports a respite care centre for terminally ill children, and for that I simply pot up spare plants - sometimes just into yoghurt pots or paper cups - and those either go to a lady up the road who sells them to her launderette customers, with them putting the money into a collection box for that cause or, if mobile enough, I take some down to their charity shop in town.
We have other members who can do little more than perhaps research quiz questions and answers either from books or on the net. Those are then used in quizzes with the prizes that various people make or buy and donate going to wherever winners nominate, and depending upon the people and prizes concerned. It's easy to adapt accordingly and I know I get more pleasure and positivity from it than I put in. That just seems to flow in - but often faster than I can put it out! Lol
Yes, I get periods when I feel lousy, and have to swallow my pride and ask friends and relations for help with things. Yes, it goes against the grain to do so, but it teaches me a lot in the process about myself. Also to feel grateful and appreciative of what others do for me when I can't.
Sometimes the easy bit is giving and the hardest of all accepting what is given to me. For example, that daft old Wildcat Team mate having sat around here half the night, bless him. Gave me a great opportunity to enjoy some roast butt and aged beefcake on a plate when I managed to catch up with him napping at his office desk earlier. I might be wrecked, but I'm not dead yet! Lol Perhaps now he will trust my dogs? (But we have another member on here who could prove useful for something positive as a result.)
That reminds me, I'd best check up on something here for work before I forget - my memory can be terrible, but some things I don't forget. Until it became too difficult to travel a distance on a reliable basis and I felt I had to quit, I was working voluntarily with offenders and in a couple of HMPs. I loved the work, and still keep my hand in a little. However, sometimes the offenders are just playing games and putting me to the test. I need to deal with one of those now. ;) Just a little research before I plan my strategy and commit it to memory, you understand? ;)
As soon as I can without throwing a spanner in the works for another forum's challenge, I'll 'fess-up' my weight on here. No qualms at all. But I am so looking forward to my next challenge that I'll let you share in it...
The Dragon's Fire Challenge (http://petcraftproject.proboards24.com/index.cgi?board=Comps&action=display&thread=7492) - I've been waiting years to get into a position to play this fellow, and not just because he once blew up one of my computers either. Lol This is my 'Olympic Challenge' and I'm going for gold! Lol Win or lose, I am really going to enjoy this one.
Andrew...
This is all fascinating to me. The mass they found at the time I had my hysterectomy was fibroids, and I'm hormone receptive apparently. Although I still have one oviary, surely that must be past producing anything - or would it still do so because encysted? I had a mare some years ago with cystic oviaries and she was constantly in season and looking for the stallion, even though surely that should only happen after the egg follicle has been released at its maturity? We always used to try the mares with the stallion three days after they first came into season, then on the fifth day. However, mares known to have cystic oviaris were the nymphomanics of the equine world. Why, I wonder? Hormones? (Lol - Do I need a cold shower?)
Must find out how near our nearest Farm Fresh place is. I really do love asparagus. I was once told, when in the Evesham/Pershore area where a lot is grown, that it is akin to oysters as an aphrodisiac. Trying to recall what I was doing then and when not feasting on the stuff.. working my butt off, I expect, as all students were on peacework rates and built up quite a thirst in the fields.
-
It sounds like you are keeping very busy.. thats good.. I sometimes fail at that.. had some bad depression.. which has not helped.. I start to feeling better then wham!! Back down again.. like someone lowered the boom... I love to sew and have not been able to do so for awhile.. with all the stress and crap happening... I am slowly working my way back to that and have taken steps to get there.
I have an apron project that I need to finish for a preschool friend... I believe she is donating them...
I like art projects but am having difficulty completeing my projects ... I work on them little by little!
I am hoping that I get them finished soon. I really need to hurry up.. as they are important to me to get completed.
I am sorry that things have been so rough for you.. too. I am glad to hear about all you are accomplishing despite the difficulties .. You are amazing! Thank you so much for posting here.. Its just exactly what I needed ... You are wonderful motivation... THank you for sharing so much of yourself here in Our forum.. I respect your determination and stamina to pick yourself up and keep going.. well done!
-
Karen, I can recall a time prior to an original diagnosis of CFS/sero negative poly arthropathy, and when my SI joint was still locked up into the wrong position after the accident - it took about 12 years for that to be discovered! - that I was on some 26 assorted pills a day, including anti-depressants.
I was so 'down' that I used up any remaining energy planning the best way to get off the planet. The trouble is, I was born contrary and with a question on my tongue, and if I feel that I am right about something when someone far more qualified in the matter than I am is wrong, then I will take them on until one or other of us is proven right.
I did not believe that I was clinically depressed, but psychologically so. The latter, given a chance and clear head, I knew I could deal with, and if permitted to try. I'll let you decide if I was right.
That challenge nearly beat me though, and as I beat my head against a wall trying to get through to various doctors, and I came literally millimetres away from killing myself - and it was not a cry for help. I'd been asking for the right help for a few years by then but somehow failing to communicate properly with the doctors concerned. It was only catching the expression in one of my dogs eyes that stopped me on the point of no return, kicked my rational brain in its tender parts, and I started to think that if I could put so much energy into negative, destructive thoughts and actions, then perhaps I could turn that effort and energy into positive thought and action. Bring on the challenges!
Frustration and anger are manifestations of fear. By identifying my own root fears and facing them, and then conquoring them by addressing all the little things that contributed to them, one at a time and as and when able, I am gradually moving a mountain and seeing the benefits - even if only a teaspoonful, or a pill-sized portion at a time. Lol
I was lucky. I had people around me who knew me, and what I am capable of, and one of them even attended doctor's appointments with me while I challenged the need for this or that drug, or questioned this or that diagnosis. I was off my head much of the time from both pain and the effects of all the medication, and that pal was present as much to protect the doctor from me as me from myself! Lol
I can laugh now, but it was horrendous at the time, and my behaviour appalling. (My language even worse!)
Doctor's don't take kindly to being told to 'take the cotton wool out of their 'so-and-so' ears, shove it into their mouths and to learn to listen', believe me! They do not like having boxes of medication dumped back on their desks because it's the same junk as they'd previously prescribed and that I knew to be causing more problems that it was helping. And they most certainly do not like being addressed as Dr. God! (And that is only a fraction of the whole from that period - I was NUTS! Probably still am, but I'm not dangerous today... just for today.)
It's been my experience that we all respond or react to others in the manner they respond or react towards us. If we listen to our emotions and use the information we receive from them to identify what it is that may be disturbing us to good effect, we can take back control when we feel that has been lost, and have the tools at our disposal to recognise that we are powerless over the first THOUGHT but not over the second. We don't have to act on the first thought, but have the choice to replace it with a better one.
For example, when facing an arrogant doctor who wasn't listening, instead of automatically reacting on my first though, and with my own arrogance and anger (because I was afraid of the medication and its effect on me), it was possible to act on a second more assertive, less aggressive, thought. If the doctor concerned wasn't so far up himself as to be beyond reach, then the result was much improved, discussion and a furthering of the learning process achieved.
I changed doctors several times, and until my emotions were telling me I'd one with whom I could communicate in a manner of mutual respect. That even if that doctor admitted openly that he didn't have the knowledge I sought but would try to find out more and work with me, rather than attempt to control the uncontrollable!
I felt as if my present one was willing to work with me and allow me to try doing some of the things I wanted to do with my medications because of the combined side effects. In MY CASE, that was to come off as much of it as possible and starting with the anti-depressants. I was convinced I didn't need them and that they were causing more problems than they were addressing. I needed control of my rational head back before I did something either stupid or dangerous and that could have had me locked up, in one place or another.
In all, it was a heck of a cocktail of drugs that I was taking, including opioids on which I was hallucinating but that weren't addressing the pain they'd been prescribed for. With the exception of the inhalers, I was soon down to taking just a single low dose codeine phosphate in the mornings to help control the IBS, and a salicylic acid based anti-inflammatory three times a day. The latter worked, but was still in too high a dose, as I was covered in bruises. With the help of the doctor, I tried other NSAIDs but finally chose to opt for common aspirin and to monitor its effects and dosage for myself, as required to manage inflammation on the principle that less is more. That didn't upset my stomach or affect my cognitive ability. I felt my fears letting go.
With the aspirin working reasonably, I was able to look at what might, in my diet, be affecting the IBS, and now it's only very rarely that I need to medicate for that, but can manage it with diet.
At last. I could actually start to 'feel' my body working again and listen to what it was telling me I needed, not what someone else thought it needed. Once off so much unnecessary medication, my ability to communicate my needs or concerns to the doctor improved, too, as did my attitude - but I don't always get it right. I do, however, feel as I have a lot more control over managing and living with my conditions, and that helps me to feel more positive all around.
I honestly believe that much of the problems I've experienced over the past six weeks or so have come about because of the effects of having to cease the aspirins and allow yet another cocktail of assorted medications attempt to deal with everything that's happened to my body during that time. My own natural body chemistry is still haywire, and well out of control, although I do feel as if I'm beginning to make some progress toward getting things back on track. There are some things I know that I can't manage without, others I know that I must. We are all different. What works for one, won't for another.
As for art and craft projects, I don't have to tackle a large, long term project. Just making a dog lead or collar that takes me only five minutes instead of a coat that might take half or three-quarters of an hour, is fine. It is still one small bit of mountain shifted from 'raw materials' to 'finished product', and there's a mountain of webbing here! Lol
It's the boost from seeing that little bit of progress that provides the positive little highs which build up a good reserve for emergencies. Parcels packed and into the post bag are done one at a time, and each one is another positive high. If I looked at the whole lot at once, I'd feel daunted and nothing would get done! (Just as it doesn't if on too much medication. Lol )
If I want the little highs to keep me topped up, then I can have them paced suitably and a little bit at a time, so as not to overload myself.
Obviously there are many differences between us and what we each have to do or take for our conditions to be managed, but I'd suggest you don't look at the differences, look at the similarities instead. Build on or adapt any that you think are right and suitable for you.
Positives come in small packages for a good reason - they can better fill holes.
-
*tears*... Thank you for your words tonight...
-
Old dragon, I wonder if you have any idea how often you have helped me (and, I'm sure, others on the TRPD forum) to get my act together and look at the many many positive things in my life instead of the couple of really rather minor problems! And the funny thing is - once you start feeling better because of concentrating on all the positive stuff, the other problems do become 'smaller' and/or just not (very) important!
(I started a few years ago on the other forum for which the old dragon makes the leads etc., when my back was still quite bad, - and it has helped me through many bad times by keeping me company and letting me do something positive and worthwhile, therefore not feeling so bl*&*y useless anymore)
-
And the amazing thing is, that forum is MEMBER RUN and has NO MODERATORS! Everyone who joins for the right reasons, and has a desire to support its aims and primary purpose, and who turn the desire into action and become more deeply involved according to their personal circumstances, time available etc., gets more out of it than they bargained for and in ways they never imagined! Lol
That being the case, people who know it and me through it, will understand when I say that everyone gets out of it to the degree they put in and often three fold!
If the same principles and (lack of) management structure were put in place on behalf of any other positive and worthy cause anyone would care to mention and that its supporters wanted to benefit, it could work just as well.
It's all so simple at basic level that so many miss it, and yet it caters for all, regardless of age between 13 and as old as we get; ability/disability; race/ethnicity/nationality and so on. :)
What's more, it has grown as a result of a handful of groups created for the purpose of psychological study back in 1971, and that simply refused to disband after the study wa completed!
Did I say completed? Who am I kidding? It's like a mushroom or a triffid - spreads everywhere, even here on TNS forum there seem to be at least four or five - no, six now - members who are now both TRPD & TNS members as well.
Who was it said (Triune) psychology wasn't a science? Then again, it is also an Art, surely? Indeed, it's all things to all people and whatever they choose to make of it, and it will work if they work it.
Whatever, I think it works great for me, an I'm still here - if not all there. :D
-
How are you doing, Karen? I have been thinking of you. Trying to send you some of my surplus positive energy.
Had a great laugh this morning. Having predicted that those two fellows who had teamed up and from opposing Wolf and Wildcat teams would get fleas off each other, sure enough one of them felt a tickle on his leg this morning and discovered a real, live flea! LOL
He had to head off to the local vet's for stuff to treat his dogs with - and that meant putting his hand in his pocket, too. Oh, the pain! ;)
Good to have the opposition on the run, and have a meeting shortly with my team mate for the challenge. There's life in the old dragon yet. ;)
-
I am here.. Had not slept for a couple days and was Kinda wiped out yesterday again.. and no sleep again last night.. am still going with no sign of sleep.. I have horrible heartburn.. but I think whilst trying to get some sleep in my chair I laid back to soon and my Doxycycline got the better of my throat or esophagus!
Fleas are the pits.. Hope you did not get bit!
How was your meeting?
-
So sorry to hear that you are having difficulties sleeping, Karen. I can empathise very closely with you in that respect at present. Over the last 4 nights I have only had sleep during one of them. My body feels wiped out, and yet my brain doesn't seem at all fogged.
It does, however, appear to be having an effect on the amount of blood and plasma being drawn out through the drain that I STILL have in situ 19 days after my last operation. It was supposed to have been removed today. The specialist nurse at the hospital asked me to ask the district nurse to remove it, and to check back to her if necessary. (I don't think they trust me at all, somehow!) Because the fluids had doubled on yesterday's output of 40ml (after I had had some sleep) to 80 ml today, after a sleepless night, the nurse refused without checking. All she could get was the answerphone, so I am still stuck with this infernal drain!
My back is once again sending me signals that tend to precede the onset of those horrendous muscle spasms, and I would so desperately like to run a deep, warm bath and sink into that to try that way to settle it down, but can't with the drain still in situ! I have now threatened to remove it myself, as something feels very wrong, considering I've not been physically overdoing things and even have the affected arm supported as I use the keyboard to avoid any repetitive actions from the elbow up. Getting to feel a bit like a caged bear now, so those lads can look out tomorrow in that challenge, as it won't be a plague of fleas they'll be facing then if this keeps up, but an old dragon with a bear's sore head on its shoulders! Lol (That's either if I get some sleep or not and, if the latter, I can stay awake!) Could be I'll only be fit enough to sit back and let my defensive playing partner do all the work. ;) Nothing like throwing them in at the deep end to force them to learn to swim!
I think it is only that challenge, and the preparation etc., that is holding me back now from either removing the drain myself or removing someone's head verbally. Have about 30 hours left now before I can legitimately remove a couple of heads and rearrange them in the challenge, but hoping that perhaps someone might manage to rearrange mine too in the process! lol Would much prefer NOT to take a grizzly bear's head into the challenge, if it can be helped. (That even if I have more the body of a bear well prepared for hibernation, than the sleek physique of a lythe, darting dragon. ;) )
Oh, well, I live in hope. ;)
-
Sorry they were unable to remove the drain. I always hated those things! Yes the no sleep thing can be killer, I am tired I just cannot get to sleep!.. Maybe later. I have been getting in the position around *:00 pm in the evenings and trying to concentrate on sleep but nothing works consistently and well. and what may work one time will not always work the next time so its certainly a battle!.. I would like a really warm bubble bath but my tub stinks and is tiny and uncomfortable and one in it is difficult for me to get out of that flat on the floor position!
Anyway a big hot tub could possibly aid the sleep thing... My old hot tub is history ... and I don't have a the money to buy a new one! LOL..
I need a shoulder replacement but am not a candidate for one due to weight illness and heart stuff.. etc... so like you my shoulder is real bad... Is your shoulder damaged from accident or the cancer?
I get a lot of the between the shoulder blade pain with mine but not spasms back there unless my arm blows out again then the spasms seem to go from fingers clear into my back and shoulder blades.
I hope you heal fast!
-
Such a killer, I agree, Karen, and I still haven't slept! I was nearly there earlier and drifting away when someone hammered the door in that urgent sort of way people do when something like the horses have escaped and are galloping up the main road. Of course, I shot up, the back had a minor spasm, I tripped, stubbed my toe, turned the air a virulent shade of blue, and by the time I reached the door the salesman for the (presumably) double glazing company wa about five houses on up the road... Lucky him!
Since then the back's been playing havoc and a friend has brought down her husband's vibrating heat pad, which I am now sitting against. Hoping it will ease things enough to stop it getting any worse until I can do something more to deal with it.
I think the drain tube has probably stuck to me inside the wound as that's healing, and it is likely that which is pulling as I move and causing the fresh blood and plasma that is now increasing instead of decreasing. With it being stitched in, it can't be turned or manipulated a bit to stop that.
My shoulder joint is arthritic, but not badly so, and it was the accident in 1991 that kicked off the original spinal damage, but the SI joint was locked up at that time, then not spotted for twelve years. By that time I'd been complaining about feeling as if I'd one leg longer than the other and sitting uneven when riding the horse (on the times I could mangage to do that) for years and was just being told I've some sort of curvature higher up and needed to improve my postture. It was a physiotherapist who found the problem, and actually freed it but, of course, after so long like it, all hell broke out then much further up the spine, Guess I'd had years of the vertebrae trying to repair bone that had worn and fill up wider gaps in the thoracic region. Now it's probably busy wearing out bits it's built and fraying the nerve endings and goodness knows what besides. I was able to do exercises that helped prior to the last op, but can't get the full extension to do them yet and since. It almost feels as if the wrong bits are connected, but probably just healing scar tissue from where all the nodes were taken.
-
A little peace offering, perhaps?
http://www.oldielyrics.com/lyrics/jefferson_airplane/comin_back_to_me.html
-
I don't know about coming back to you, but thankfully, my head is coming back to me... thought I'd lose it, if not quite the plot, yesterday.
Not a pretty sight at the best of time, but a headless old dragon is truly a grotesque sight to behold! Lol
I recall a Drugs and Alcohol Misuse Seminar back in '93, and a certain Irish guitarist's conversation with the organisers. They hadn't a clue what he was talking about, and I have to admit it was an education for me hearing what they had to say, and how little they had heard of what that musician had shared with them.
I have a link to a piece he then wrote following that and which may prove interesting reading for any health professionals or interested parties here: OBSERVATIONS MADE AT AN ALCOHOL AND DRUGS SEMINAR - 7.10.93 (http://petcraftproject.proboards24.com/index.cgi?action=display&board=Shares&thread=2158&page=1)
He makes points, and in most colourful language, that could hold clues for me as to why I have so much trouble communicating with some of the people trying to help me through the cancer at this present time. However, I think they are beginning to get the picture now, and after the last few days of sharing with them just where my head is after only 4 hours or so of sleep on one night from the last six, and also just what I meant, way back before the first operation, when I said that I was more concerned about the effect of whatever was to come regarding the impact of the cancer treatment on my back, than I was about the cancer itself!
Yes, cancer is a serious, life threatening disease, I am not in denial of that and I do take what is said to me seriously, and however many humorous comments I might make - but MY cancer is only a threat to ME.
My back condition - and the effects that can have on my system, plus the many areas it impacts on in my life, and when given my past medical history, level of training and life experiences (very little exposed here to date) - makes dealing with my back several levels higher as a priority when it come to a threat to life!
I don't need a smoking gun in my hands to kill. I don't even need to raise my right fist to do that. There is more than one way to die, believe me.
Words don't even need to appear as blood on the page or screen to kill and it is not only the pen that is mightier than the sword. The voice alone can gut a man, even a man one loves, given the knowledge of how to do that and the opportunity and skills to be able to put him back together again slightly rearranged and to the advantage of all concerned.
I'm a woman, but I'm still here after the same experience, and thankfully, no damage done to anyone in the process. :D
My drain is out now, and I could not believe how much of that plastic tubing was coiled up inside my oxter! Around 9" - 10" of it!
Off now for a long soak and a sleep before that old limo with comfy cushions arrives to take me into battle again. Alas, I do like my comfort these days, and even an eighteen years old Mercedes worth under £500 beats James Bond's Aston Martin any day of the week for me.
'Happiness is wanting what you have, not having what you want.'
-
Such a killer, I agree, Karen, and I still haven't slept! I was nearly there earlier and drifting away when someone hammered the door in that urgent sort of way people do when something like the horses have escaped and are galloping up the main road. Of course, I shot up, the back had a minor spasm, I tripped, stubbed my toe, turned the air a virulent shade of blue, and by the time I reached the door the salesman for the (presumably) double glazing company wa about five houses on up the road... Lucky him!
Since then the back's been playing havoc and a friend has brought down her husband's vibrating heat pad, which I am now sitting against. Hoping it will ease things enough to stop it getting any worse until I can do something more to deal with it.
I think the drain tube has probably stuck to me inside the wound as that's healing, and it is likely that which is pulling as I move and causing the fresh blood and plasma that is now increasing instead of decreasing. With it being stitched in, it can't be turned or manipulated a bit to stop that.
My shoulder joint is arthritic, but not badly so, and it was the accident in 1991 that kicked off the original spinal damage, but the SI joint was locked up at that time, then not spotted for twelve years. By that time I'd been complaining about feeling as if I'd one leg longer than the other and sitting uneven when riding the horse (on the times I could mangage to do that) for years and was just being told I've some sort of curvature higher up and needed to improve my postture. It was a physiotherapist who found the problem, and actually freed it but, of course, after so long like it, all hell broke out then much further up the spine, Guess I'd had years of the vertebrae trying to repair bone that had worn and fill up wider gaps in the thoracic region. Now it's probably busy wearing out bits it's built and fraying the nerve endings and goodness knows what besides. I was able to do exercises that helped prior to the last op, but can't get the full extension to do them yet and since. It almost feels as if the wrong bits are connected, but probably just healing scar tissue from where all the nodes were taken.
I hate when that happens!! It is lucky he was gone! LOL.... I have gotten where I don't answer if I am trying to sleep cause its just so hard to get back in that mode.. I usually go pile my bed with pillows sit myself up if its daytime lock front door turn on TV in living room so it is some noise.. then go in shut my bedroom doors close the blinds and sit in the darkened room with my head and shoulders up and my arm propped to avoid pain then I don't move short of a fire or emergency! especially if I finally feel lucky! YAYYYYYY! the TV
and shutting the door and my apnea machine all seem to help with hearing the door usually!
I am glad they pulled your tube.. and you had a bath! Yayyyyy!
That must feel better.
My shoulder has really bad arthritus but more trouble with a few muscle tears and damage from an old injury! It has moved down covering the area of my shoulder rotator cuff with bone spurs from hell down into my elbow and wrist and hand causing the left side of my hands and three fingers to tingle and get numb regularly!,, I need a shoulder replacement so says the Osteo surgeon...
I am sorry about your shoulder we share that pain and lack of mobility and extension their.. It effects more then the arm though the shouler blades etc.. as you know..
I wish that the surgery had helped you more, but the nature of these kind of things can be as such and sometimes help a lot but do not relieve it altogether..
I had a bit of sleep but am pretty tired today! Wish I had more energy.. blood pressure ids low and am just tired.. I hope you are ok from lasts challenges... I am thinking of you and wish you good thoughts!
Hugs,
Karen
-
(((Hugs))), Karen.
Will be thinking of you when all the positive energy starts really powering-up later on, and doing my best to send you as much as I can and that you may need. No promises because, as I am sure you realise, the 'Old Dragon' is no real shamaness, it's just a role I play in the game - but who knows, perhaps a little bit of the magic of role-play and the music really can make a difference?
I would like to think so. ;)
BTW, my surgery wasn't to address any arthritic shoulder problems, but because my breast cancer had spread into the lymph nodes under my arm. My next appointment's with the oncologist and early in July. Looking like a three-fold attack on he cancer front and with chemo, radiotherapy and hormone treatments. I have great faith in the power of 3 - me being involved with Triune/TRPD anyway. Lol
-
Just to let you know that, thanks to a superlative performance on the part of the newly named 'Natural Born Dragon', we wiped out the opponents in an all-time record time of 4 minutes 57 seconds! YES! Bring 'em on! Lol
It took considerably longer to put their bits back together again, and slightly rearranged, as per requirements.
The Wolves' team's Shaman was presented as Mr. Mincemeat on a plate to his thrilled and grateful wife, who declared herself (I think) to be 'around the moon', but even if her native tongue predominated, it was clear she she'd no complaints, even if her 'Cooks and Crooks Group' hubby was looking decidedly sheepish after the battle. :D
Stoned Indian Mike (SIMike here) just managed to fess-up in defence of Mr Mincemeat in time to avoid becoming Catgut, and had to enter the battle ground as 'Ghost Warrior' (aka Dead Man Walking) and having come out of retirement to play with a band of other rejects from the music world, proved himself worthy of acclaim as one of the band members of Dead Men Walking - and what an inspiration and tribute to survival those guys were last night. Were it not for the talents they wasted in the gutter during youthful insanity, they would be up with the best of those surviving decades at the top of the industry. I have to fess-up, I had a lump in my throat and tears in my eyes just watching and listening to them play. If I'd been wearing cap I'd have thrown it on stage to you all. :)
The Natural Born Dragon and his Princess Amirah asked me to formally announce their engagement and to bless that after the battle challenge, too, and I am happy to say I was delighted to do so and that I am still... the Old Dragon. ;)
Seems as if a good night was had by all. ;)
-
(((Hugs))), Karen.
Will be thinking of you when all the positive energy starts really powering-up later on, and doing my best to send you as much as I can and that you may need. No promises because, as I am sure you realise, the 'Old Dragon' is no real shamaness, it's just a role I play in the game - but who knows, perhaps a little bit of the magic of role-play and the music really can make a difference?
I would like to think so. ;)
BTW, my surgery wasn't to address any arthritic shoulder problems, but because my breast cancer had spread into the lymph nodes under my arm. My next appointment's with the oncologist and early in July. Looking like a three-fold attack on he cancer front and with chemo, radiotherapy and hormone treatments. I have great faith in the power of 3 - me being involved with Triune/TRPD anyway. Lol
Thanks Old Dragon but the way I see it good energy is good no matter Who or where it comes from.. Thanks so much!
I wish you the best and was aware of that. I wish you lots of good energy also.. Just keep up the faith and be strong.. you can do it if anyone can.. you are an inspiration to others , so don't ever stop being an inspiration to yourself.. I don't know you, but from what I do know.. you are a remarkable human being!! Hugs!
-
Karen, whatever you might think of me, you need to know the people behind me and who originally challenged me to offer my still-living body for medical research on here. [;)] I wouldn't be here at all today, were it not for them - and not just on one occasion have they picked this wreck of a body up and kicked it back onto the rails. In truth, I have lost count of the number of times they have done it, or in how many ways, and recharged me with huge doses of positivity.
So what if they tease me over a multitude of failings and shortcomings, even having renamed me 'Dead Woman Talking' - and there was some controversy over whether that should have been 'Dead Woman STILL B****Y Talking' - I know exactly what they are doing and what they really feel. The only time they tell me to shut up is when it's delivered along the lines of: 'FFS take the cotton wool out of your ears, shove it in your mouth and LISTEN!' [;D] That's when I take notice. (Although, being a little hard of hearing, they sometimes have to repeat themselves a few times for the message to penetrate. I am sure language is a science, you know... [::)] [;)]
I had the same problems as a child at school, with listening skills, and seemingly at either end of a see-saw. It got me into a lot of trouble, one way or another.
I went to a church school prior to secondary school, and once, when very young, asked what one teacher meant when she said 'Suffer little children who(instead of 'to')come unto me.' and when supposedly quoting from the bible.
I guess she was having a bad day, for the next thing I knew, I'd been dragged out of the classroom and into the area where there were the little wash basins, and was having my mouth forceably washed out with carbolic soap and while held over a sink kicking and gurgling!... But there's nothing wrong with teachers, of course, they represent authority, don't ya know. [;)] (And that's likely only one of the early examples of an element of PTSD that I can still recall at times... 'I'll teach you to question MY authority!' are words that I often hear ringing in my ears at the strangest of times, even today, some fifty years on.
I couldn't answer her back at the time, one can't when choking and gagging on a bar of soap, but yes, she DID teach me to question authority. ;) For that I thank her rotten corpse - unless she's well over a hundred and still fighting to prove her own immortality, that is? [;)] Just the scent of carbolic can bring that memory to the front of my mind - but nowadays I can deal with that one rationally. It doesn't stop me in my tracks, rigid with fear - and no, that's not the one that got me into a survivor's group. These things can build on each other for years and suddenly something else, some other trauma occurs, and it just tips the balance. I was lucky, the right people were in the right place at the right time - and they are the ones that taught me to deal, and not just cope, with these things. To face fear and recover, or keep suffering - and that IS optional, Karen. [;)]
I'm only sharing with you what I learned from some of the people still alive and playing in those thrown together band the other night. Some of the drummers are ex-military guys who have been through far worse than I have and are much more physically disabled than me, with more acute PTSD to deal with and that has wrecked their lives and that of their families in some cases BUT if ever you need to draw in some positive energy, just try listening to some really good military drumming and you'll find yourself marching along with it.
As for that other band, we only to have to watch the decline of some of the present day, very talented people in the music industry and the media reports surrounding them, to grasp where those old guys are coming from, and to realise what they have achieved simply by being still around and capable of climbing onto a stage, let alone as well as they did! Every one of them knows they are a dead man walking, and that is a lot of miracles on one little stage. Proves miracles can happen, I reckon, and that gives me HOPE, I don't know about you?
It'll let another secret out of the bag here too. There have been times in my life that I have been afraid I'd lose hope and give in, so I had a symbol of Hope tattooed onto my left upper arm, and a good few years ago now, just so that I couldn't lose it! [;D] Better that than superstions about wearing odd pairs of trainers or lucky socks which have long fallen into holes, as a certain Mr. Mincemeat has now realise won't save him from the Old Dragon in a challenge. [;D] His wife is still declaring herself 'around the moon' at his transformation, and he's getting used to his new clothes. So much so, that he's been entertaining kids with his own version of the fairy story about the 'Emperor's New Clothes' today... Can't help wondering what the next Am-Dram pantomime will turn out to be, but I could hazard a guess! [::)]
Grab yourself a picture of rainbow, Karen, pin it on the wall to look at whenever you need to, and who knows what magic can happen. [;)]
-
I won't be around much later today - in hospital as a day patient while they fill me up with radioactive dye and scan my bones... Well the dark bits are the old bones, and the light bits the regenerated bone growth... Next they will be telling me I am riddled with arthritis because they have somehow lost that info from my medical records, I suppose?
Had one doc once ask me what I took for it after an x-ray on either a foot or a hand, I can't recall which? Told him aspirin when I needed anything. He looked a bit odd at that, so asked if he thought my jaw might improved if I chewed it straight from willow bark or something. He said the thought my jaw got enough exercise, as it was already well worn out from yakking... No, that last bit's a fib... a psychologist pal told me that bit. [;)] The 'real' doc didn't have an answer, so just reached for the prescription pad and gave me some opioid based pills instead. The effect wore off after three days and as my body got used to them, and when the dose doubled, still with no effect, my system just ejected the junk.
-
Hi Thanks for the nice message and I am here... Just Tired.I hope your day went ok.... How you feeling this evening? Those tests are no fun!
I woke up sick and started puking around %:oo am this morning until around 9:oo am.
A friend from church and old Called and I had tried to call her to get someone to get me some food..But I fell asleep the next thing I knew she called me and asked if there was anything I needed.. LOL.. Such odd coincidences... Asked if she could pick me up some things from the store so I could see if it would stay down.. I was so hungry...
She brought food and I ate it about 10 am. Then I fell asleep for hours.. I was having a dream about her putting my dishes in a basket and taking them to her place and washing them... LOL so when I woke up at about 4 PM Rob came and I went to the store with him but was flustered cause I was so hungry and could not remember when she had come..or I had eaten, and should I really be hungry.. LOL So I called her while standing in the isle of the store..sure enough that was at almost 10 am she said. so
I went ahead and bought some dinner. She said, are you ready for me to bring back your clean dishes..?" LOL.. I said, "did you really do that..?" LOL she laughed and said, "Hon You were out cold and I tried to wake you, but I took them anyways cause you were not waking .. LOL She snickered and said your chest was rising and falling so I knew you were just sleeping and way out of it!" Basically was her statement.. Boy I hate it when my pills and being sick get the best of me.. I was so rummy that they could have torn the house down around me and I would not have heard them or known what was happening!
I hope you feel well tonight..
Thanks again...
-
Here it is only 5am, Karen, and my hospital appointment isn't until 11am - and I have yet to sleep! [::)] I think I'll go and run a bath and see if that will help? I often sleep or meditate in the bath and let the tap trickle enough to keep the water warm. My helper has a fit, but my sleep pattern is so disrupted at present, any sleep will do.
Sometimes, like you, I sleep really deeply and through anything. I once arrived home in the early hours and after working away, to find there was a 14' waterspout shooting up from the road outside where a water main had burst and it was 1 am in the morning. It was hitting the outside of my house, and the sound of water on the window really loud. I called the emergency number for the water board, made a cup of tea and went to bed. I can remember the noise of the workmen arriving and starting digging up the road right outside my bedroom window, but fell asleep regardless.
When I woke all the neighbours were up in arms and complaining they'd not had any sleep because of the pneumatic drill etc. They couldn't believe I'd not heard it... but glad I didn't let on to them that I'd called out the emergency services at that hour of the morning to fix it! [:D]
Will let you know how I get on tonight and when I return - unless I manage to fall asleep first and either miss the appointment or can't stay awake long enough after it. I am allowed out of the hospital between having the injection and the scan, so, if allowed to eat, may grab a nice lunch there, as they have a very good cafeteria, then sleep it off in my car, which is very comfy, but I'll need to let them know where I am and hope to goodness they'll be able to wake me! [;D]
I often can't remember if or when I last ate, too. Half the time I don't even know what day of the week or date it is either. [:D]
-
Me too.. about the day of the week thingy too.. Its embarrassing.. sometimes have to go look out the window to see if its night or day.. Those are usually bad days .. and I don't even open the blinds or the curtains! .. I hate those days as they all run into one long long day!
-
Having such an erratic sleep pattern as I have, it's not unheard of for me to try taking a nap in the afternoon and to wake up and see that my watch says its five or six o'clock, so decide to pop up the road to the local store. It's only when I get there, and find it closed, that it starts to sink in that the street is very quiet for an evening... Then I'll realise it is morning. [;)]
I don't tend to feel embarrassed, but simply amused. It's an excuse for a chuckle to share with friends.
-
Karen, I am sure that, whatever the Power greater than me is, and that I believe in, whether it's called God, Mother Nature, Fate or whatever, one things is certain. It has a sense of humour!
I am sitting here sneezing my head off, after just getting back from checking once more to see how the pony is after her bout of colic. The vet said she could have a few handfuls of hay if she wanted to eat. I must have shook out a bit absolutely laden with pollen! Already I can feel my back starting to kick off again, but at least the pony's feeling better and has settled down now. The old horse seems to be going back and forth to check she's okay and still around. Glad I left the gate to the yard and barn doors open, else he'd likely have flattened those by now.
Seems my son has had his spies out, and one reported to him that I was seen walking back from the yard... Not very good spies, as I had the car! I'd just picked up the wrong keys, so had to walk to where the fence was suitable for me to get over easily instead of unlocking the gate.
Came home to mayhem. Forgot to shut the collie out of the kitchen, so he did his usual bin raid trick. He has to remove every single item and deposit it like a paperchase trail through the house before he is satisfied. Lol
They say things always happen in threes, so I am hoping that with me being ill, then the dog, and now the pony, that's all three done and dusted, and perhaps now I can get back to normal? [:D]
-
You should pick up a surgical mask for the hay problem to filter out the pollen they work good for me too. It was Smokey here all day have some bad fires up above us and the ash and smoke are beginning to fall down on us a bit here. The wild fires this season are already in full swing here in northern California!
-
It's an odd thing, but all winter I fed hay from the same source and without a problem, but a good idea to use a mask... Thinking about it, usually I have my specs on when doing the horses, but it was wet last night and I took them off and popped them in my pocket. I can see just as well with or without them at night, and to do that sort of task, and was afraid of losing or damaging them if I fell in the mud getting over the fence. I often find it's things like smoke getting in my eyes that can trigger allergy reactions.
We also have fires here on the adjacent, old reclaimed colliery site, but it's been too wet recently. They are usually started around here deliberately, and by children, I'm afraid. School holidays can be a nightmare, especially. Ours are nothing like on the scale of those I have seen on TV and in California, though. I don't envy you those at all, and hope they are dampened down very quickly. Would willingly send you the rain we have had here lately, if I could. It doesn't feel like summer at all, more like autumn and my old horse was munching on the leaves blown off the trees this morning, too. Why, even my nipples seem to feel cold today, judging by the way both at standing to attention today! Lol (The one was inverted prior to my first op, and took a while to reappear following surgery. I actually thought for a while that I'd lost it, as the surgical scar couldn't have been any closer at that end. Lol)
-
I hope the mask helps you.. Yeah that is a shame about the fires.. both here and there. It can sure reek havoc with the old lungs!
I am glad your nipple came out of hiding! LOL It was just in shock! The weather will bring them to attention for sure! LOL!
How are you feeling today.. I hope you are doing ok. Was thinking of you out in the rain dealing with those birds by yourself.. I hope you got warmed up and your tea did the trick!
I still have not tried it I need to look again I was unable to find any last time! Will try the co-op next!
Hope you have a good morning and feel good today!
-
The weather here is still wet and autumnal, Karen, which means my joints are talking to me well, including my lumbar spine, but that's just dull aching, not the same at all as what the thoracic spine is capable of kicking off with,although I can feel that twitching a bit, so it's an aspirin day today.
Now that the doc has insisted on adding those to my regular prescription, making them 'official' - even though he has know I was taking them for years - he will be able to see and monitor exactly what dosage keeps the inflammation damped down and the points where it fails, and see for himself what occurs to interfere with it.
He could certainly see, looking back through my records, just how often and over what time periods, it has been necessary to step in with a short course of steroids to get things back on track. Managing that inflammation seems to be the key both to my arthritis and to a degree, my fibro. Get it right, and if I don't do anything silly, and the spasms and electric shock sensations that seem to trigger over-production of various natural body chemicals, also seem to be controlled. With those behaving, my head seems to remain fairly level and rational.
Last night I had another reasonable amount of sleep, but I'm not feeling as refreshed as I'd like, so I'm hoping that will be improved with the IBT trial. I think the gentle traction that will put on my spine will help, because I think the neurological aspects hold the key. My fibro kicked off following a back injury, and many symptoms have that neurological connection, including the sensation of of having spiders or centipedes walking over my back, the burning/scalded skin sensations - especially over my shoulders and upper chest at present, and when the skin itself is quite cool to touch, walking into cobwebs etc. [::)]
Even though my doctor has indicated his skepticism about IBT helping varicose veins and oedema, he does seem sufficiently interested to want to know how I get on with it. He said he couldn't see any harm in doing the trial, just to expect the veins and oedema to get worse. I think he's expecting me to return to beg for another prescription for frusemide, and despite me explaining about taking nettle tea and asparagus, and how my calf measurements have already reduced considerably (up to 5cms for the one) simply by using those. Whatever, he wants to be kept in the loop.
Knowing some of the other areas that I'm involved in with my voluntary work, he couldn't really see what benefit it would be to me to be referred to the hospital's pain management clinic or for any counselling for anxiety! Lol In fact, I suspect he knows exactly what I meant when I remarked to him how difficult I found it communicating with some of the medical staff that seem unable to grasp or even listen to what I had been attempting to explain to them. That cannot hope to understand something they don't have any experience of or the ability to draw emotional parallels with something the do have the personal experience of.
Seriously, Karen, when talking with some of the medical staff, I was reminded of a counselling skills course that I had to attend some years ago, and because my training and qualifications didn't include a basic bit of paper required by the system. For simplicity sake, I did that course, and it's likely the same one that many medical staff attend as part of their training.
In that there was a small amount of role-play involved, where the students had to 'act' various parts of potential clients, as well as the role of a counsellor.
In many cases, the students lacked the life experiences to enable them to get into the client roles, in others, if they had the life experiences, they'd never undergone any form of therapy or addressed their own issues, so how on earth could they hope to help another person in those circumstances?
No sane blind person would rely on another without sight, to lead them through an obstacle course or a mine field, as that would be madness - and yet that is what I experienced and they were attempting to do, and with anything outside of the actual cancer treatment it was a minefield for them! In fact, anything else that might impact on, or that the cancer treatment could impact on, was outside their ability to address too. They weren't even giving me the basic information that I could look up the answers for myself or take to people who were able to provide answers! They couldn't (or wouldn't) even tell me how to unblock that wretched wound drain for a start and answers like 'put a plaster on it' are too ridiculous for words in those circumstances! Lol If that's how they deal with that situation, how can they hope to deal with the complexities of a system like I have, with the allergies, drug sensitivities and neurological problems? [::)]
Naive and inadequate, though they might be, at least they mean well and do seem to know their own specialist areas well, even if listening skills and attitudes are not likely to score much more than a 1 or 2 out of 10 from me! Mind you, I doubt they would award me even that score, but at least I KNOW I can be arrogant, patronising and full of contempt. In myself, it's for me to address those things, as they are easily amongst the greatest of my shortcomings. Perhaps that is why I find them so easy to recognise in others? [;)] (But, of course, there is nothing wrong with them... It's everyone else! [:D] )
-
It is all very complicated if one has "never been there" so to speak. I find the same problems when trying to explain what is happening inside my body and inside my head.. I know what s happening but can't explain it.. I feel things that are not right but to explain that is impossible...
Mentally the battle inside my head rages on and I find it very hard to keep negative thoughts away as Its hard to find positive feelings when pain and sickness fill you with misery and very short days of reprieves.. I find it important to try to laugh at whatever opportunity I can even if I am the only one doing so because I am the only one finding humor in something or even myself! I have a very poor sense of humor sometimes it needs a kick start and a huge boost!
Yes I understand the weather thing I also get achy especially my ankles shoulder and hip joints... My hands ache also when it becomes so damp!
You have a nice attitude.. I like it.. "Its everyone else!" LOL...
Hope you feel better throughout the day.. and get some more rest if possible,, I failed again last night .. but today is a new day.. I am done counting sleepless nights it only makes me feel worse to know how long I have been awake! LOL
Have a good day.
-
We have a thunderstorm overhead now, but gradually passing. I was going to dash off earlier to do the horses, so that I'd be back in time to watch Rafael Nadal playing Andy Murray at Wimbledon, but even missing a bit of that match won't get me out in this weather! Lol
The horse and pony won't be expecting me until later anyway, and are hardly starving.
Karen, remember what I said in an earlier PM about the things we cannot change... Well, I keep repeating it now to myself, cos one thing is sure, I cannot change the weather! (Although I suspect Andrew may be able to have some influence over it in certain parts of the world! Lol)
At least it is raining in Wimbledon, too, delaying the current match. It'll be just my luck that Nadal & Murray won't get on court until tomorrow, when I have appointments I can't change. [::)] [;)] - Something, somewhere, has a sense of humour... [;)]
-
Yes I remember! Boy it is odd you, Rosalind, Neily, Turnipsock all have tennis on the brain the last couple days.. LOL... Yesterday it was salmon... smoked salmon!One day everyone was asparagus crazy... LOL... oh gawwwwwwd I think my mind has finally collapsed... LOL I read all these posts and then things start sticking in my head like lists.. LOL I think I am bored or my brain has changed its organizational skills and is now storing weird things in all the odd corners! Jeesh.. I'm loosing it! LOL...
Tenis must be popular there whilst tournaments are in process!!!
Take care in that weather.
-
Hey I wonder if that dehumidifier will help ease the aching from the weather?
-
Lol - People seem to either love or hate tennis over here, Karen but then there are guys who like to watch the women playing, and it was then that I started take the Mick out of them by insisting on watching the men play. Where as they would be commenting on those bits of the female anatomy that appealed to them and had nothing to do with the sport, I'd wind them up by commenting on the muscles, clever play, athleticism etc., mutter a few comments to compare the best players to racehorses and so on. Heck, if they wanted to lower the tone with their comments, I'd up it, and just to prove and score a few points. Funny thing was, I got to enjoy watching tennis in the process. [;)]
I have a dehumidifier, Karen, but have been finding it too hot and dusty in this little place without a window open. We have a lot of fabrics here and cutting those and sewing can really create a dust. To sleep at all, I often need to do that in the bath, so a bit awkward dehumidifying a room with a bath of hot water steaming away in it. Strange how the bath eases both my chest and the back, but rain aggravates it. It doesn't seem to make much sense.
BTW, I had asparagus again tonight with a chicken and rice dish. [:D]
-
No it doesn't make any sense I find the same thing here but had never thought about dehumidifying anything. People with Tb always did better in dirt climate.. so was thinking hummmmm it might work for the ole rheumatism, aches pains and such too! LOL.. Not that I have TB I don't LOL but you know the ole routine! LOL..
The only way I want to watch a tennis match is if its men and they are naked...LOL.. wonder what Wimbledon would say to that? LOL Do you think the idea has a chance!! I might start enjoying the watching of Tennis! LOL!!! Hee hee hee! I can think of a man or two, I would not mind seeing smacking the ball around in the raw! lol....
-
The best you get at Wimbledon is a flash of chest muscles if the male players change their shirts during a break. [;)] I wouldn't mind at all if the men played topless. [;)] Don't suppose the men would mind if the women did...
-
Oh I have seen plenty chest muscles whats the fun in that!? LOL I want the full Monty!!!
-
Lol... Somehow I think we will both be disappointed.
-
LOL.. I don't know.. I think we need some volunteers to demonstrate for us.. I have a feeling a few studs from the forum would prove to not be so disappointing! LOL
What's that???? Do I hear a volunteer???? eh... I CAN'T HERE YOU!! LOL LOL...
-
I hope you had a good day today and that you are feeling better.
-
Now a 'Naked Scientists' calendar for charity might be an idea, Karen... [;)] We could invite photo submissions and act as the judges, don't you think? [;D]
I managed to wake up in time to get to the hospital for my appointment with the oncologist, and now have a date for the start of the chemo. That will be a combination of three drugs - FEC - 5 Fluorouracil (5-FU); Epirubicin and Cyclophosphamide. Six cycles at three week intervals and over about four months, starting 18th July, so only a fortnight away. Apparently they include an anti-nausea drug with that and given intravenously at the same time. Lots of leaflets have also been given to me to read up on, and everything from instructions in the event of catching an infection to where to get a wig! Lol
The lads are already betting on whether or not Andrew's I.B.T. will save my scalp, so that will be an interesting experiment. The hospital have offered me a 'cold cap' treatment pre chemo, which cools the head & can help to prevent the drugs reaching the hair follicles, but then that might interfer with the experiment results. (I think also the Wolf team's shaman is looking for some revenge, too, over the 'George Clooney' that his wife gave him after Natural Born Dragon and I beat him and his team mate in that last challenge, so just might find myself being challenged in the not too distant future... [;)] )***
In the meantime, I have a mountain of work to address over the weekend, so don't be surprised if I'm not around much online. You could always make plans for that 'calendar' idea... [;D]
(***Edited to add that i was not wrong, Karen - there was a revenge challenge issued last night. [;D] The battle is on again.) Lol
-
6 nights of IBT now - and 5 really refreshing night's sleep. My concentration on work related matters has certainly improved. Visible improvement in the oedema in my legs - can hardly wait to show my doc the evidence. Pain levels reduced, and still no sign of the stiff neck that Andrew has predicted.
What more can I say?
-
Now a 'Naked Scientists' calendar for charity might be an idea, Karen... [;)] We could invite photo submissions and act as the judges, don't you think? [;D]
I managed to wake up in time to get to the hospital for my appointment with the oncologist, and now have a date for the start of the chemo. That will be a combination of three drugs - FEC - 5 Fluorouracil (5-FU); Epirubicin and Cyclophosphamide. Six cycles at three week intervals and over about four months, starting 18th July, so only a fortnight away. Apparently they include an anti-nausea drug with that and given intravenously at the same time. Lots of leaflets have also been given to me to read up on, and everything from instructions in the event of catching an infection to where to get a wig! Lol
The lads are already betting on whether or not Andrew's I.B.T. will save my scalp, so that will be an interesting experiment. The hospital have offered me a 'cold cap' treatment pre chemo, which cools the head & can help to prevent the drugs reaching the hair follicles, but then that might interfer with the experiment results. (I think also the Wolf team's shaman is looking for some revenge, too, over the 'George Clooney' that his wife gave him after Natural Born Dragon and I beat him and his team mate in that last challenge, so just might find myself being challenged in the not too distant future... [;)] )***
In the meantime, I have a mountain of work to address over the weekend, so don't be surprised if I'm not around much online. You could always make plans for that 'calendar' idea... [;D]
(***Edited to add that i was not wrong, Karen - there was a revenge challenge issued last night. [;D] The battle is on again.) Lol
A Calander could be a good fund raiser... LOL.. Could be a "good fun raiser" too for us Girls! LOL.. Geesh I better behave myself before someone kicks me in the backside!!
You start your Chemo rounds on my Anniversary..
I am glad they are doing the anti nausea drug... When my mom did her Chemotherapy.. She tried it without because of the expense, but we soon included it anyway because without it she was miserable... It is a good thing... was not mandatory here, but that has been since 92' and 93'.. so things may have changed a lot since.. I am glad that it is on your schedule.. Its a tough process and I am thinking of you and sending you lots of good thoughts!
I hope Andrews IBT helps it seems to be really helping right now!
UH OH the revenge challenge! Good Luck.. now go kick some major butt!
-
Karen, I have the facilities here to print calendars, but reckon we'd struggle to find enough willing models here. [;)] Lol
I can't get over the difference some decent sleep is making for me, at present. I keep expecting it to revert, because usually my expectations let me down... [;D] I said to Andrew earlier this eveing, that I feel like I did about 20 years ago! (Energy-wise, at any rate.] Now I need to try and adjust the timing a bit, and so that I can function at the times 'normal' people do, instead of hitting the sack at around 4am and when the birds are waking up.
Not doing too well on the 'Revenge Challenge' front, though. I need to raise another £23.59p sponsorship before Friday before that pesky shaman has to even start putting his hand in his own pocket! Lol I reckon he must have been shaking his shaman's rattles or something, but then again, he's stirred up all manner of other groups' members for various different causes, so that I'm over a barrel! Lol He also seems to have arranged for various goods to be donated for an auction to support the same cause that he'd have to contribute to if I can get the required sponsorship, even though persuading others not to sponsor me to save his own pocket. Lol (Not that his efforts will let him off the hook! If I don't get him this time, I will another! Lol)
Quick update: Down to £13.59p now before the shaman has to start paying up! [;)]
-
I am so glad the IBT is working for you! That is wonderful! GO GO GO! That is great!
Hope the challenge goes well!
Yeah Volunteers eh???? Hummmmmmmmm Well do we have any takers.... annonymous volunteers! LOL!! Hey Michael! How bout You Stud? Hadrian?? Neil? Ummm Doc? Jimbob? who else HUMMM??
Come now all for a good cause... Spirit lifting I say!!! YAYYYYYYYY! LOL...Lets not forget Chris Dave Ben???? LOL...
-
Another GOOD day today, and despite even more rain and severe weather warnings for the area. I suspect that pesky Wolf team's shaman has been doing a rain dance because, guess what? Yes, that minimum sponsorship among has been reached, so now he has to start dipping into his own pocket to double everything raised! Lol
We have a photo shoot planned for Sunday, despite more rain being forecast, but I doubt we'll find any naked scientists hiding in the bushes... BUT, perhaps we'll find the odd stripped to the waist builder when things are able to go ahead with the work, and if we ever get any sunshine this summer?
Perhaps we should ask in the chat area, Karen? [;)]
Despite having been busy all day, I still have energy remaining, and just as well because we are stocktaking at the moment, and planning another fund-raiser for the coming weekend. I just hope this good period continues for a while longer. My grandson is entering his very first dog show, having claimed ownership of the old lurcher, Scampi, who is really quiet and well behaved, and will walk quietly to heel even for a three-years old kiddie. He has been practicing hard, so I do hope the dog show isn't rained off. I could also do with a dry spell so that I can repair the windscreen wiper on the old car, too. It probably only needs the fuse dried and cleaned and a squirt of WD40. It usually breaks down this way during periods of prolonged wet weather, and when damp gets into the fuse box. (And I usually end up fumbling and dropping the fuses into obscure places when fixing it, too! [::)] Oh well, I can't expect IBT to cure peripheral neuritis as well as improve lots of other things, can I? Lol)
-
I am glad you had another good day.. that is a prositive streak you have going for you!
How are the shamans pockets tonight?
Dang... I was thinking of putting my thumb out and hitchin a ride... !!Not just for the odd builder .. dog gone it!!
Maybe in the chat area..LOL..
Energy is so nice.. Its funny how before I took that for granted... and now I would do most anything to have that back again.. and to feel good and active....oh my.. that would be so nice....
I hope the weather is nice for his Dog Show and for your repairs... I like the rain in the winter but in the summer I like the sun and the shade! LOL..
I don't know we may be surprised at its results eh???
-
I've posted an update in Andrew's varicose veins thread detailing the positives that I've noticed of late, but the biggest has to be the feeling of energy, and that has to be down to having had some restorative sleep. It's still a bit surreal, and especailly because my time clock is still only half-way to being in sinq with the 'normal world'. Lol Sleep before about 4 am is still eluding me. It's a good job I only seem to need 4 - 5 hours before waking naturally.
I managed to get the car's wiper sorted - after which job, the sun has come out, so I don't need the wiper. Lol
As for the shaman's pockets, once all the sponsorship is in, they will be lighter by a little over £130. [;D] Pity it's not more, but I'm sure I'll think of a way to lighten them a bit more sooner or later - oh, and I'm now sporting a cool new haircut. Lol
Between the dog show, and Sunday's event, plus a charity auction to get organised, I may not have much free time to pop in here, but things should ease off a bit next week, and I'll try and let you know how my grandson gets on at the show. In his practice sessions, with his granddad pretending to be the judge, he has been placing himself between him and the old dog instead of really showing the dog off to the judge. Mind you, considering the dog's positively geriatric, and lies down like a frog with his hind legs stretched out behind him at frequent opportunities for a break, if nothing else, there should be some comic entertainment value to their joint performances. [;)]
I do hope you are finding things a bit easier now, Karen, and that you have having some fun too.
-
Yes I read the updates..and am glad the inclined bed therapy seems to be helping you.. that is wonderful!I hope it improves from now on!
I am glad you sorted out the wipers on your car!
Good for the lightening of the pockets! LOL...Must be somewhat satisfying!
Nice is your cut easy to deal with?
Thats funny all my dogs have laid like that when hot or relaxing!!
I hope you are well today.. and not too tired?
-
It's a strange old world, Karen, because Tuesday I felt really well. Even my lower back eased off the aching and I managed to walk down to see to the horse and pony, and to get some exercise - and yet later today I have to attend the clinic at the cancer hospital for various tests pre-starting the chemo treatment. I'm not really surprised people tell me they can't believe I have cancer, because I find it hard to believe myself!
The only things I can feel post the surgery, is a bit of a pull down my left arm when I stretch that, and as if a ligament or something has been pulled a bit tight when they stitched me up under my armpit, and areas of numbness under there where some nerves were damaged during the lymph node clearance surgery. Even the scars seem to be fading fast. I suspect that could have been aided by me having a metal allergy, so instead of stapling me back together, as they usually seem to do these days, I was stitched up with a continuous stitch. They did the same a few years ago when I had to have a hysterectomy, and even I struggle now to see that scar. :)
My next challenge regarding the car, will be to get my son driving it. He's a bit put off by it's foot operated and hand releasing parking brake, which takes a little getting used to, as it has manual transmission instead of the original automatic gears. Alas, it's likely as eccentric as I am, but I do like the comfort of that old hauler. Also, it appeals to my sense of inverted snobbery, when I can honestly offer to deliver bags of horse manure in a Merc, even a really old one! Lol [;)]
Lightening the shaman's pockets is, indeed, a satisfying feeling, although he's refusing to pay up until all the sponsorship is in. Lol
Indeed, yes, my new haircut is extremely easy to deal with. [:D]
My grandson managed to get a third place (out of three competitors) in the dog show. The judge looked at Scampi's teeth and asked him how old the dog was - somewhere between 11 and 14, we think - and the grandson couldn't resist adding '...but he's a good dog, and he chases rabbits and squirrels.' Then, when the old dog did his usual trick of lying down like a frog, Ethan also told the judge that he was just a bit tired and bored! [:D] Kids, eh? Mind you, he was probably right. However, 'bored' and 'boring' and recent additions to Ethan's vocabulary, and his granddad now encourages him to answer the phone for him, as he gets lots of calls from people selling things, so Ethan listens for a few minutes, then tells whoever is on the phone that they and the conversation are getting boring, and puts the phone down on them! He's also been known to ask them who is paying for the call? Also to come out with things like, 'You're not Welsh, are you?'[:D] I'd love to be a fly on the wall in the call centres. I wonder if the people there realise they are talking to a three years old child? That especially with the way he will strings them along and makes up outrageous stories. Goodness knows where he gets his ideas from, but he is so funny, it's hard not to be amused, and laughter never far away when he is around. It's good medicine. I do hope that you are getting a good share of that, Karen.
-
I am glad you felt well Tuesday.Sounds like you had a full day. I bet the ponies are a good distraction and they were probably glad you went to see them also~!
OH how I hate staples.. I think it is a doctors laziness.. The scars are atrocious and I was told they would be smaller because of the staples.. Bull Pucky they are wider and uglier! I have an issue with staples.. My huge heart surgery scars were carefully stitched up and they are minimal compared to these staple scars.. I hate staples... they hurt more also! I have huge long very thin hearty surgery scars that are beautiful in comparison to the scar they put in me on thanksgiving removing my Gallbladder!!!!
The Gallbladder scar is probably two inches wide 16 to 20 inches long all the way across my stomach and down to lower tummy .. Ridiculous!!!!
Sorry... Made me mad...
Third Place is great for his first show!YAYYYYYYYY! LOL I love what kids say.. cracks me up... I sure miss them, kids that is..
I wish I could have seen him show.. I bet he was adorable... He doesn't sound precocious at all!! LOL Very cute!!
My Sarah was like that when she was a year old .. Talked up a storm and new everything.. She was very vocal on the phone and loved to answer, but she would tell it like it was .. if mom was busy she would them exactly what mom was doing so if the phone rang and she picked up You better not be doing anything to personal or she would give the details about why you could not come to the phone!!!! LOL!!
Children are good medicine.. My nieces and nephews were here a couple weeks that was nice,, They went home to Idaho.. My other Great niece turns turns around Halloween in October.. She is in North Carolina with her Daddy for the Summer... I miss her so much!
It gets real lonesome around here. A Wonderful women from my Church and from my work comes every couple weeks and we take a drive and have lunch,, thats nice.
I have finnished a few things around the house and its taken months to accomplish those things.. catching up my dishes was the worse part.. I couln't get them done and they kept piling up... It was killing me to look at them.. My sister came with my other sisters ex sister in law we are all still family... and they hauled my dishes out and brought them home clean.. Has made a huge difference I cleaned the rest up and have been better able to keep them caught up.. I was just so tired and sick I couldn't even look at them... The antibiotics finally kicked in and I have some more energy not as regular as I would like but some better anyway! My inhalers have aided the chronic cough and strangling so I am breathing some better which is great!.. I still am out of breath a lot but much better then before.. I have a bit more stamina be it small at least its there it was gone before so that is good!
I hope you are well today and still feeling good.
Two more days eh?? You hang in there and hold on tight.. This ride is hard so don't let anyone fool you.. but keep going and no giving up! We will all be right here.. holding your hand and sending lots of hugs and support!
-
Glad that you have been feeling and breathing a bit better, Karen, and I know how achieving a little around the home can help lift one's spirits. I have loads of things that I need to try and get done, too. My biggest problem here is space, though, as my home is very small, and working from home adds to the clutter, too.
I can well understand you feeling mad over unnecessary scars, when there are alternatives available. Those continuous stitches are so simple to remove, too, and no needlemarks even.
Today I met the consultant oncologist instead of her assistant, whom I spoke with last time. She seems a very pleasant and thorough woman, and was very interested in the differences the IBT has made, and wanted to know more about that, telling me that they are very open to alternative therapies at the hospital. I had blood samples taken, and all seems to be on course for Friday. It seems that some of the drugs they use for the treatment are steroid anti-inflammatories, and I'll be getting one of those amongst the cocktail. Lots of monitoring or just about everything, too, including my temperature. Least little thing out of the ordinary, and they want to know immediately. Any infections, and they have me straight into the hospital.
Apparently, after the first couple of days, it's usual not to feel too bad and until the second week, when one's immune system's at its most vulnerable and one can feel really tired etc. The third week, one starts to feel better - then it's back to the beginning again, and another cycle of chemo. [::)]
Whatever, lots of work to try and tackle tonight, and loads more tomorrow, so I'd best get on, while still able to do so. [;D] I'm one of those made people who has to try and keep busy, if at all possible. If not, I hibernate and try and sleep things off, and with a 'Do Not Disturb' sign up. [:D]
-
Alas, Murphy's Law has prevailed! Instead of starting my first chemo cycle today, I'm about to start a course of anti-biotics! Having caught my son's cold, it's resulted in a chest infection so, of course, chemo's out of the question for now, and they'd certainly not want me passing this on to other patients and staff at the hospital.
Nothing for it but to turn it over and practice patience! At least it gives me a little more time to get on top of the many jobs demanding my attention, and while the anti-biotics do their job...
-
I am so sorry that you got sick.. I hope they work..and get you well right away.
Yes that would be bad as you would be weakened even further... best to get better then start..Hope you both feel better soon.
Well getting more things done is satisfying...Please take care.
-
Alison How are you doing today.. I hope your antibiotics are kicking butt with that infection... Take care today and I am thinking of you... get well soon!
-
I'm slowly recovering, Karen, but they have decided today to delay my chemotherapy another week - until the 4th August - to give me a better chance of recovering from the infection. I'm getting there now, though.
How are you doing?
-
Glad to hear it.. I hope another week will fix it up! I am OK... tired but have a bit more energy on most days compared to before which was no energy on any days so I am OK...trying to get ready for Stanford... Just a bit, rather a lot nervous... thats all. Lots of things to make advanced arrangements for..I'd rather not think about!
Hope this weekend brings lots more healing your way!
-
Glad to hear you have a bit more energy, Karen. It all helps.
Here the weather has been really hot lately, and the pollen count very high, so my breathing's not been as good as I'd like, but getting over the infection now.
My weight is still very gradually creeping down, but that may be because of having the new pony's stable to muck out in the heat! For a little one, she can't half produce some dung! Lol
She is becoming more approachable now. I groomed her this morning, and reckon a few calories were shed then, along with much perspiration! Even my specs were steaming up from the effort. I was well out of breath by the time she looked half tidy. She then promptly rolled in the shavings, so was looking as dusty as ever after that... Such is life. [::)]
-
Thanks Alison...
Horses are funny aren't they? My dog does that ... you get him clean and dry and smelling sweet as a dog can same;; and he sneaks out to the driveway and rolls in the dust like he were taking a bath!.. Then he walks around looking like a ghost!
They sure can be messy for ponies... where does it all come from!!! lol I MISS OUR OLD HORSE!
i AM SORRY THE HEAT AND THE POLLEN ARE SO BAD.. HERE TOO.. MY PALM TREE BLOOMED THESE HUGE FRAGRANT BLOOMS WHICH ARE NICE AND SMELL GLORIOUS BUT REEKS HAVOC WITH THE ALLERGIES!..
GLAD YOUR INFECTION IS CLEARING! Sorry for the caps.. I keep hitting the caps key on accident!
-
Well, the news and weather forecasts say that the season for grass pollen is almost over... funny how, around here, there are acres and acres of grasses that are clearly in flower. [::)]
The latest big bale of hay also seems to be well loaded with pollen, too. It certainly gets to my chest when filling the net for the little pony. All being well, she will be able to go out to graze this weekend, though. I just hope I can catch her again then. [:D]
Perhaps I'll be able to make a start on mouthing the young filly then too? She's only two, but turning into quite a little tank and full of herself, so I'm hoping to long-rein her a bit, too. Next year, the plan will be to break her quietly to harness and a little trap. She's too big already for my grandson to ride, and far too small for me, so I hoe to have some fun with her in a trap instead. [;D]
-
Yeah we still have lots of pollen and the weather is warm although I am so cold its nuts! My dog gone fingers are blue...! Feels damp outside and the sun is currently hiding.. its overcast but I hope it burns off soon as I am cold!..
The horse sounds pretty.. you should post a piccy someday when you get your camera working again!
Hope you are well!
Those horses are smart and they do have minds of their own.
Have a nice day.
-
Sorry to learn that you feel so cold. Here the weather is wet, but still really humid.
This is the youngster - photo was the last I took before the camera broke...
(https://www.thenakedscientists.com/forum/proxy.php?request=http%3A%2F%2Fimg.photobucket.com%2Falbums%2Fv298%2Falhammett%2FBronnie.jpg&hash=2404e1cb9ed32fd413db2a7849a41994) I've hogged her mane (and Merlyn's) since it was taken, as there are masses of burrs around at the moment, and I was having to spend two hours a day disentangling them from their manes, and then kept on getting little infections in my hands from where the burrs were hooking into my fingers - and I can't afford for that to happen at the moment. [:(] Actually, they both look quite smart hogged. Was concerned afterwards over what my grandson would say, but he liked Bron's 'haircut' and announced that he wanted one too! [:D] Kids, eh?
It's strange how, when in my stuation, one starts really looking at the little, practicalities of life.
Still not caught up again with all the work related things, though. That all seems never-ending, but it helps to be keeping busy. [:)]
-
She's beautiful Alison...How old is she?
Yeah I am pretty practical for the most part, but I think it stemmed from necessity more then anything.. the frugality part too! LOL.. I have just started to indulge myself more these days.. as if I don't I may never know what thats like! LOL..
Yes I know what you mean with the infections....I have to be real careful right now too.. especially cuts and such!
Alison.. I had some trouble at the physical therapists office the other day.. and was wondering have you ever experienced any thing like this...
She was giving me a evaluation you know checking for the range of motion for my legs knees hips etc...
She asked me to brace myself on the wall and stand on one foot..... right? Easy piece of cake.. so I looked at her and went to do it but it was as if I couldn't remember how... I could see myself doing it like I have always done but when the message went from my head to my feet I drew a blank and could not figure out how to do it.. I felt confused and disoriented.. I kept asking her tell me what you want me to do... and she repeated and showed me with her body and I still could not do it.... It took me ten minutes to stand on one foot once I was there I was really wobbly..
OK then she asked me to stand tip toed raising my heels up and holding that position ... I could repeat back the instructions but could not get my brain and feet on the same page.. as if I had forgotten how to operate my feet!! I was so frustrated that I started to cry.. and I don't know why!... I tried to introduce a very old friend of the family to somewho stopped by and I mean this guy was always here at the house Bobs friend..2 or 3 times a week.. But I looked at him smiled and said Sharon this is a ______________ ! I could not remember his name known him 20 years very well... but All of a sudden I did not know him by name.... Can meds do that... Its been happening a lot...lately... I am even having trouble keeping the year right... you know the date?? It is becoming more confuddled in my head...I think I am loosing my mind! LOL..(but not really so funny You know!)
I have not had a chance to talk with my Doctor yet but I will. Has that ever happened to you?? I have to go at 2:00 pm today for another session at physical therapy! It is sort of intimidating.... I was so embarrassed!!!
-
The filly is 2 years old now, Karen.
If you have FM, Karen, then what you described doesn't surprise me at all. It has happened to me loads of times - although not since doing the IBT trial! (Could it be related to a lack of sleep?
I have often confused the date - especially when writing cheques. I really have to concentrate hard when tired and doing such things. As for names and words - yes, my mind has often drawn a blank, and the more frustrated I become as a result, the worse it gets.
In the early days of FM, one of the symptoms I kept asking the doctor about related to my legs not working when I told them to, and as if the messages just were not getting through. It was on one such occasion that I ended up falling as a result and breaking my elbow. [::)]
-
FM? Is that Fibromyalgia (spelling)? I don't know what is causing it but it is unnerving.. I have also had several bouts of cramps where my whole body was cramping.. calves front of shins feet toes thighs, buttocks back lower and upper as well as both arms all at the same time.. I couldn't move.. It hurt so badly.. I have never experienced a pain like that.. my whole body cramped and it litterally took my breath away.. Rob had to stretch my legs out and push on my toes trying to get me stretched out of the cramp.. It took 20 minutes or so.. I was crying so bad and I could not even describe the pain.. I was sore for 2 weeks all over my body.. and for a week every time I tried to move a Charlie Horse started and began to try to spread all over...I am scared and need to talk with the doctor Monday about it its happened 3 or 4 times now.. and I don't want it to continue....
Think about the worse Cramp you ever had if had and then think about one in every muscle across your body at the same time... I don't know what is causing it but When it happened last I asked my physical therapist if she knew why that might be happening and she said Tell the Doctor right away so Monday I will! She said it could kill me .. ...I thought she was nuts but she explained to me about the heart being a muscle and what if it cramped to... I never thought of my heart like a muscle like that until yesterday! That scared me...too.. I am glad we were talking about cramps.. as I got one there.. on her table.. while exercising. She looked at me like I was nuts and said .. you did go to the doctor didn't you.......I said for the big body cramp.. No.. I cried and thought Wholly cow.. Now I know how bad cramps can really be.. and thought I best increase my potassium... but I did not because I thought I would wait till she did the new blood work...
I am thinking low potassium might do that?
I haven't slept well last few weeks... days of no sleep then a 12 hour sleep just very sporadic...
The date thing is bad.. like what year is it? uh I don't remember.. some days I do remember...body parts not working when I try to move them.. its very weird..
They sent me to the medical supply to pick out a 4 wheeled walker with a seat as it seems that my hips have a lot of degenerative arthritis severe.. she said my walking on the treadmill has only made it worse.. and she started me on some Biomechanic exercises that will take the impact off my hips and strengthen the gluteous maxi mus, or buttocks muscles.. and that big muscle coming down the front of my thighs to the knees.. My knees have another problem they have some kind of grissley sounding thing happening when I bend them and all the other parts are popping loudly when walking.. pelvic bone hips and knees.. so we have to strengthen before we walk cause right now it is just grinding away the bone...This walker has 4 wheels a couple hand breaks and a seat with a basket so instead of falling down I can sit when I can't walk any more....
It seems like a big cumbersome pain in the behind! In the mean time I have a metal single sided 4 footed single armed walker that hold your arm.. it is supposed to help take some of the weight from the hip joint! which is fine.. but it is awkward and I am having trouble keeping the cane part in step with the foot step.. I haven't figured it out yet... do I step first then move the cane or move the cane then step.. Its all confusing.. sometimes I step faster then the cane moves.. LOL.. Its confusing and stairs are a booger!
It's not like I can't walk I can.. but am supposed to remove some pressure from the hips.. we will see how it goes..
The Philly is pretty..
I am sorry you had broken your elbow.. Man I am nervous and wish they would figure out what all is going on... seems something new all the time.. as if whatever I have is spreading or progressing very fast!
My Great grandma was crippled by some kind of disease.. I don't know what it was but at the last few years was in a walker then finally sticken to bed... My grandma had heart problems and died in the hospital the night before her trip to Stanford.. she took a saved up mess of medication and killed herself! She had enphasyma also with other problems she was a chain smoker also! My Mom was too!
I just want to go and get some answers.. I want to know everything thats wrong .. and I do not want it swept under the rug... I can't fix things if I don't know what all is wrong..
I just hope that at least some of it is resolvable.... if not at least perhaps the painful parts anyway...
sorry.. I think I am rattling .. am just a bit scared thats all..
feel like a condemned person... I don't have all my affairs in order and am trying to line up all my ducks..... Caught my self thinking about who I care about enough to ask to be with my daughter should she ever decide that a baby may be in her future... I want to find someone to give her some good Mommie advice....... and help her when her time comes to be a Mom..She is really going to need help.. first time she has to clean up feces or puke she is going to fall apart.. God help her if The doctor has to give the baby a shot! LOL.... Oh my.. I so wanted to be a grandma..... and Laugh at her as she learned to be a Mom too..
sorry... I am so dang nervous....
-
Hi Hope your weekend is leaving you feeling better still. Its been very Hot here and I have had a slow weary day.. I did not sleep again last night and its already 12:30 am an I am not sleeping yet.. I tried for two hours earlier around 7:00 pm but no go! Will try again soon...
Hope you are sleeping and getting some good rest! HAve a nice Sunday and good morning to you!
-
I seem to have lost a post here... probably only typed it in and forgot to hit the post button! [::)]
Anyway, I do hope that you are feeling easier now, Karen, and less stressed or bothered by sleeplessness.
I overslept on the morning I was due to start the chemo, so had a rush and no chance even for a cup of tea before flying out of the house! My son had been supposed to drive me to the hospital, but I couldn't reach him on the phone at all, and he was three-quarters of an hour late by then. I decided to drive myself there and worry about getting the car home later if unable to drive it myself then.
Funny how slowly the rush hour traffic seemed to be travelling... or maybe how fast my ancient old Merc can glide along when it gets the chance? (Did we pass any speed cameras??? [8D] )
Whatever, I was in and having the chemo by the time my son arrived at the hospital to look for me. Discovered then that the terror of a grandson had finally woken his father at 9am to tell him his phones had been making an awful racket, so he had switched them off! [;D] Nice one, eh?
Yesterday, I didn't feel too clever following the chemo, but much more myself today, so hopeful this will keep up, and I'll not find it too bad. Finding my mouth is a bit sore and I am really thirsty for cool, refreshing drinks... funny how suddenly everyone else around me wants the same ones I like, when normally they go for the horrible, sweet variety I hate! [:-\]
-
I seem to have lost a post here... probably only typed it in and forgot to hit the post button! [::)]
Anyway, I do hope that you are feeling easier now, Karen, and less stressed or bothered by sleeplessness.
I overslept on the morning I was due to start the chemo, so had a rush and no chance even for a cup of tea before flying out of the house! My son had been supposed to drive me to the hospital, but I couldn't reach him on the phone at all, and he was three-quarters of an hour late by then. I decided to drive myself there and worry about getting the car home later if unable to drive it myself then.
Funny how slowly the rush hour traffic seemed to be travelling... or maybe how fast my ancient old Merc can glide along when it gets the chance? (Did we pass any speed cameras??? [8D] )
Whatever, I was in and having the chemo by the time my son arrived at the hospital to look for me. Discovered then that the terror of a grandson had finally woken his father at 9am to tell him his phones had been making an awful racket, so he had switched them off! [;D] Nice one, eh?
Yesterday, I didn't feel too clever following the chemo, but much more myself today, so hopeful this will keep up, and I'll not find it too bad. Finding my mouth is a bit sore and I am really thirsty for cool, refreshing drinks... funny how suddenly everyone else around me wants the same ones I like, when normally they go for the horrible, sweet variety I hate! [:-\]
I have done that with my posts before.. and the back key saved me.. There have been times where they just vanished and I think I dreamed I made a post to a certain thread... LOL
I hate traffic like that.. it does sometimes seem to be forever before it moves along!
Well thats a new excuse..LOL.. I think I better try that one out on someone! LOL.. Glad he finally made it though!
Yes when my mom did her Chemo she got a very dry mouth also.. She did not do so well with it... But times are better and there are so many things to do to ease the side effects.. Like the anti nausea that they add.. It used to be they would not give you that unless you paid extra for it , but it was so hard on the system that the anti nausea worked well even at the price!
Well I bought a bunch of green tea to try with some honey we will see how I like it!
Hope you are well!
I am sorry you felt badly that day and hope you are doing some better. Just keep on going... I am sending good thoughts to help you along!
-
I am guessing you are not feeling so hot and I am sending as many good wishes to you in hopes you will soon feel better. Hang in there..Alison!
-
Thanks, Karen. [:)]
I am hanging in there. Have a few rough days but those largely brought upon myself! (My head is always out to get me. [;D] )
I went to town last Thursday in the car and to pop in the computer shop then collect another case of the elderflower and springwater drink that I find so refreshing. Went in late and parked in a disabled bay along the exit road, bit stupidly front end in and up against the wall. I usually park that way, as then it's my tow hitch left hanging out over the end of the bays, which aren't made for darned great old estate cars/station waggons! Mine's a big old Merc, and there are many around who are a bit prejudiced now against disabled drivers, big cars and even women! [:D] Whatever, when I got back to the car, the exit road was in rush hour mode, and I just couldn't be bothered with the hassle of throwing my car's weight around in order to force someone to let me out. Instead, I had a snack with me, a can of the spring water and wasn't in a hurry. Had warm sunshine of my shoulder, a comfy seat and wasn't in a rush. Stupidly decided to rest my eyes while waiting... and woke up four and a half hours later! Doh!
Had been wearing my wellies, intending to feed the horses on my way home, which I then had to do by moonlight and a torch, and was very aware of a niggling pain by my right knee and the wellies being very tight. Yes, I'd brought on phlebitis!
As I'd also been laughing my head off over the stuff coming in for Bed Blockers (screenplay/black comedy and about Andrew's IBT - but set in a crazy geriatric commune/residential car home) off the writing team's members) I'd started triggering my back off again and into spasms. [::)] Same old story - sleep disorder kicked back in, too! Trying now to get that back under control but at least it gave me the opportunity to get my own doctor in on the act/team, so he'll get to read the draft script, and even if he's officially only on the team in an advisory/consultancy role as a medical professional, as almost all of the writers involved are inclining their beds and noting any improvements or otherwise in whatever they may be doing it for, or basing characters on people's real case histories when using IBT, at least that part of the screenplay will be real! (In fact, as everyone writing appears to have been typecast, the lines between fantasy and reality and becoming somewhat blurred! However, when I counted all the submissions for sex scenes yesterday, those numbered 50! Alas, Lots of the most unlikely of fellows seem to be experiencing erectile dysfunctions! Not so much the usual ones - more the opposite problem! [:D]
But enough of my activities and my batty bits of fun, how are you doing, Karen?
-
Hi Alison..
Glad you are hanging in there! I know about them rough days.. and I do know that my attitude on those days and my inability to rest completely plays a big part in it! Yes I think our heads do tend to do that to us! LOL..
That is quite a surprise isn't it! I have had rounds to town made a couple of stops,and had to park somewhere lock my doors and lie down and rest.. The time does get away from me.. have had just that happen and it is quite surprising..I just need to stop and can't move another minute without a break!
Is phlebitis some kind of inflammation.. as I do not know exactly what it is?
I am sorry though.. I have knee issues this week myself my therapy is making my knee caps hurt real bad when I walk.. am now confined to a walker if It is more then just hobbling round the house.. I can manage inside on my own.. according to me.. LOL.. The Doctor says use the walker but I hate it.. it is awkward big and hard to maneuver in my home! LOL If i used it inside that would mean I have to rid my house of lots of collections.. LOL... I need a Ebay Honey to Help me get rid of some stuff! LOL...Anyway the walker is helpful out and about, be it awkward or not.. takes the pressure off my hips and knees..It is hard on my shoulders however but at this point I am losing use of both shoulders and my hips and knees... I am determined not to give in to this.. I am having trouble with muscle tissue as well as bone deterioration.. Dr. Thinks he has found something and my next trip down.. will hopefully be a revealing trip...
The anti-inflammatory the Doctor put me on is finally helping with some of the pain issues although at night I am still having to take 1 powerful pain killer to sleep , as my shoulder is in bad shape by evening.. But down to 1 pain med a day is really good as it was 4 a day before sometimes less if the arm was feeling better...
Anti-inflammatory helps.. its a herbal one that will not hurt my liver or kidneys!
Sounds like a good screen play! :) That is so cool.
I am sorry your back has acted up again and I hope you can get it all back under control.. Sometimes pain control is hard when so many things can trigger spasms.. I am sorry to hear that!
%o submissions for sex scenes.. LOL.. I don't doubt it! Hee hee! Gee Maybe I should meet some of those dysfunctional Guys,, LOL.. LOL.. Just kidding... Maybe! LOL..
I feel pretty good today, Just very worried about a friend, and some personal problems.. I am trying to deal with....
The weather is weird has rained and been sultry and doesn't look as if it knows what to do out there today..
I went to my kiddos graduation yesterday.. at the preschool... All of the children I was teaching were graduating.. they all made me a "we miss you Teacher Karen" video.. brought me to tears.. I miss them so bad... and now they are are gone moving to kindergarten... I guess they are good tears as well as sad.. It sure doesn't take much to bring them on lately...
I wish I could share their Video.. but privacy will not allow it.. in public view.. But it was very touching and so sweet!
Hey Alison..
why did the Boy Bubble Chase the Girl Bubble??? Cause he wanted to see her BUST! LOL..LOL..
I heard that the other day somewhere and I loved it! LOL.. So simple and cute... LOL..
Well Hope you are well today and smiles are in your heart! Stay strong!
-
Phlebitis is an inflamation, Karen, and in my case of the varicose vein below my right knee. It's caused because the valves in the vein are compromised and don't work properly. By falling asleep in the care wearing those wellies which put pressure on and further constricted the circulation there, with my legs bent as they were, blood became trapped between the vein's valves.
Besides antibiotics to help prevent an infection, I have cream to apply and that helps to breakdown any blood clots to prevent thrombosis. I think it's officially termed 'thrombo-phlebitis', when of the nature mine is.
At least it's responding to the treatment, but my own fault entirely for bringing it on this last time. I have such a history of it, that I should know better!
Glad to hear that you have been able to get out a bit, even though being around the children must bring out many mixed emotions.
Physically, I've been quite up and down of late, but still trying to keep busy - just at a steadier pace than normal! I find that jusy being able to take small steps to deal with things that I can manage, a bit at a time, is better for me that feeling daunted or down over the amount of things I can't manage at the moment. At least then a little progress can be seen and that gives me a boost.
So far I've managed only three part-car loads of things transferred to the new workshop/storage place, but it's a start.
I also seem to have managed to get the back spasms back under control again witout having them escalate into their really bad stage, and when I have to resort to the steroid anti-inflammatories.
I'm trying to address my sleep patterns now, so that the hours I sleep are more on a par with the 'normal' world's! I seem to have a lot of early morning (for me) hopsital appointments coming up, and as I often find I don't sleep at all until 5 or 6 am - waking and getting up, and then through rush hour traffic to the hospital for 9am is a nightmare! Lol
I have my second chemo cycle tomorrow, and was at the clinic yesterday ofor blood tests etc., but at least those all showed that my blood count and immune system has recovered okay from the first cycle three weeks ago. Thankfully, I don't have to be at the hospital until 2pm tomorrow, but will still need to arrive their early, so that I can get a parking space! Think I'll plan to have lunch there, as they do nice meals in the dining room, and very reasonably priced. It will save me needing to cook, and I can always take a book... or fall asleep (as I often do) in the waiting room! The nurses there were cracking jokes yesterday about me having nodded off in just about every area or room they have put me in so far! Lol At least I can laugh, but however true, is it such a bad thing to be relaxed enough about it all to nod off? [;D]
-
Phlebitis is an inflamation, Karen, and in my case of the varicose vein below my right knee. It's caused because the valves in the vein are compromised and don't work properly. By falling asleep in the care wearing those wellies which put pressure on and further constricted the circulation there, with my legs bent as they were, blood became trapped between the vein's valves.
Besides antibiotics to help prevent an infection, I have cream to apply and that helps to breakdown any blood clots to prevent thrombosis. I think it's officially termed 'thrombo-phlebitis', when of the nature mine is.
At least it's responding to the treatment, but my own fault entirely for bringing it on this last time. I have such a history of it, that I should know better!
Glad to hear that you have been able to get out a bit, even though being around the children must bring out many mixed emotions.
Physically, I've been quite up and down of late, but still trying to keep busy - just at a steadier pace than normal! I find that jusy being able to take small steps to deal with things that I can manage, a bit at a time, is better for me that feeling daunted or down over the amount of things I can't manage at the moment. At least then a little progress can be seen and that gives me a boost.
So far I've managed only three part-car loads of things transferred to the new workshop/storage place, but it's a start.
I also seem to have managed to get the back spasms back under control again witout having them escalate into their really bad stage, and when I have to resort to the steroid anti-inflammatories.
I'm trying to address my sleep patterns now, so that the hours I sleep are more on a par with the 'normal' world's! I seem to have a lot of early morning (for me) hopsital appointments coming up, and as I often find I don't sleep at all until 5 or 6 am - waking and getting up, and then through rush hour traffic to the hospital for 9am is a nightmare! Lol
I have my second chemo cycle tomorrow, and was at the clinic yesterday ofor blood tests etc., but at least those all showed that my blood count and immune system has recovered okay from the first cycle three weeks ago. Thankfully, I don't have to be at the hospital until 2pm tomorrow, but will still need to arrive their early, so that I can get a parking space! Think I'll plan to have lunch there, as they do nice meals in the dining room, and very reasonably priced. It will save me needing to cook, and I can always take a book... or fall asleep (as I often do) in the waiting room! The nurses there were cracking jokes yesterday about me having nodded off in just about every area or room they have put me in so far! Lol At least I can laugh, but however true, is it such a bad thing to be relaxed enough about it all to nod off? [;D]
Thanks Alison.. I did not know that could happen in or around a varicose vein. I am sorry your nap created such a problem!Good that the treatment is working this time.. I take it it doesn't always work?
Yes I loved seeing the kids and the parents.. it was amazing seeing them leaving sooooo soon. It went so fast being away from them.. I do feel a bit cheated.. Is that bad... I wanted to be able to complete what I started with them and I feel like I messed up.
I wish you were feeling so much better. It is very difficult to be so up and down and emotional roller coaster is a hard ride.. I wish you better and understand!
Well three loads is very good.. You beat my record... LOL... Now I have someone to catch up with... YAYYYYYYYYYY! Motivation.. Thanks Alison.
Sounds like you have a lively clan of doctors and nurses there to keep you smiling.. Awww you should experiment while you are dozing in different parts of the room and see if you dream different kinds of dreams in different places in the room..?
Looks like we both have our sleep all messed up.. I give up trying to fix it.. LOL.. I am too tired.. I just go to sleep any time I can anymore as if I don't I feel horrible not sleeping really takes the wind out of my sails and my functioning level drops off to nothing! I make mistakes can't remember things correctly and today I spent a long time trying to remember my forum password.. Now that is just not something I forget! BUT I did less then an hour before I typed it in and was posting.. then boom when I came back to sign in I lost it.. I had a real good cry as I feared I was never going to be able to keep my head about me to get back in... I was hot and miserable so that probably did not help was a bit dehydrated.. my dang pills creep up on me and then the heat socks it to me and compounds my water intake..problem..I forget to drink more liquids.. today I had a glass of water and a 8 or so ounce glass of green tea.. then I was blahhhhhhhh it hits you fast then its too late and you need help.. I hate the really hot weather!
Please be safe in the traffic traveling to and from Chemo.. You really should have someone drive you if possible.. I remember your son was going to that day and was late.. do you usually have a ride? I hope so! I went yesterday and had a whole battery of Blood tests done for Stanford yesterday.I hope it was enough.. I have not much left to give em.. LOL I just feel like a pin cushion thats all...
poke poke poke poke poke!!!! They might as well just open their mouth and bite me! It might be faster! Better find a nice handsome Doctor that is a part time vampire and do a little necking.. LOL Might be more fun!
I hope you get some rest and all goes well for the weekend Take care Alison.. be well.
-
I don't feel too bad today, Karen, thanks, just need to be handy to the bathroom, but did manage to do the poultry, although got a friend to see to the horses for me.
The roller-coaster ride I mentioned is more of a physical that an emotional one, though. I have so many things to try and get done, so not knowing from one day to the next how I might feel makes it difficult to make plans. Still, two chemo sessions down now and only more to go... then the radiotherapy and hormone treatment... Hmmmm
[;)]
Let's hope we ca both get the sleep thing sorted soon. I think it must have been around 5am before I go off to sleep yesterday morning, and I feel now as if I've only just had lunch! [:D] (I have!) It's no wonder I get days and dates mixed up! Not at all sleepy now, and it's nearly 1am here already - I thought it was about 10am! Where does the time go?
-
Alison.. Tell me about radio treatment do you mean radiation? If so I have just never heard it called Radio treatment, but assume thats what it is?
I do understand the physical roller coaster I have been doing that for over a year now and it is really hard to handle.. Just take it one day at a time.. thats what a friend impressed upon me.. and to my surprise that is what has helped me so much!
Hope you get your days and nights sorted out..
I really don't care when I sleep anymore as long as sleep comes. I have had to take my sleep at face value and whenever it comes its good no matter when .. That way I don't go crazy trying to remember the last day I had any sleep.. if I try not to dwell on it I feel better...
Am glad you were not feeling bad today and am hoping tomorrow goes as well!
HUGS YOU...
I spent the evening in Eureka having a pot luck Mexican dinner with old friends and watched goofy old sci-fi movies and just came home.. it is 1:08 AM. Not very tired!
Tried to blow the candles out on my Birthday cake and had an episode with chest pain and severe coughing.. I took a big breath and went to blow and good grief couldn't breath worth anything felt as though when I blew the air out that it wouldn't refill my lung and got really sharp pain in my chest and in my lung area.. If I didn't know better I would have said my lung felt as if it had collapsed.. I felt like I couldn't get air... scared the soup out of me.. I was able to get my inhalers and try to inhale .. had barely enough air to get any in... but then after a couple minutes it lightened up and the pain got better and I was able to breath better..which was great..! I think I just emptied my lung or irritated something I don't know!
Boy I tell you... Blowing out candles is for kids..!!! LOL.. At that rate its good there were not 48 candles on that darn cake! Took me ten minutes or so to get it all calmed down.. then I was fine.. I am fine and felt fine after breathing was better and the pain subsided... so weird...
Anyway made it to year 48.. so now I need to work on 49 LOL.. [;)]
I hope tomorrow is nice for you and the sun shines in more ways then one! [:)]
-
It could be different terms for the different sides of the pond, Karen? I don't know that much about it ye, but have been told I'll need a number of 'radiotherapy' treatments after the chemo, and understand that these are short blasts of radiation to the area that was affected by the tumours that have been removed. That's only for a very short duration and carefully targeted, but on a daily basis and for about three weeks, I think.
I don't know about blowing candles out on a cake, but 1/2 hour of my grandson earlier this evening, and I feel exhausted! I don't know how teachers cope with maybe thirty of these three year olds, I can't cope with one! [;D] Know the feeling though about the pain of taking a deep breath, only in my case it comes from my back and just manifests itself in the chest!
Today's been a really chaotic day here, lots of things causing disruptions to plans, and the rain's not helped. Can hardly believe it, but I'm about ready to head off for an early night already! Just as well, as loads to try and do tomorrow, due to things going pear-shaped today. [::)]
-
Yeah Thats radiation therapy.. They usually give you a couple very precise tatoos for the machine to aim at then they are able to set the machine precisely in place so it is only targeting the spots it needs to hit... It is a pretty precise thing.. and I am sending you good wishes that you will do well.
I am glad you visited with the grandson.. they have tons of energy don't they.. Being a preschool teacher is tons of fun and lots of work for most people but I found it exhilarating and way fun! Kids are the best!
I hope tomorrow finds you rested and you are able to manage your days activities without wearing your self out.. Pace yourself and be careful..
Lots of hugs
Karen
-
Pace myself? Chance would be a fine thing! It has been a manic day, Karen, and pouring with rain too.
I managed to see my doc today, despite the raptor receptionist who refused me an appointment until next week - when, incidentally, my doctor is on leave! (One of these days I really will write a letter of complaint about that woman!)
I'd actually written a letter to my doctor, and took it up to the local surgery, where the receptionist there is lovely and the daughter of a friend. She took my letter straight through, along with the eggs for the doctor that he likes, and it seemed he wanted to see me! Felt bad, as I was queue-jumped straight in but could easily have waited.
Whatever, he wanted just to check me for signs of dehydration, because I'd mentioned in the letter about the low body water percentage, and he was satisfied I was okay that way. The other thing that being on the IBT trial and with people following my case study there had been suggesting - no, insisting - that I spoke to my doctor about was the possibility that I have arachnoiditis? I'd dismissed that originally, as I've not had spinal surgery or an epidural, which is what some were asking me about, or directing me to websites that were dealing with that aspect.
BINGO! The doctor only had to look back through my medical file and to see for himself what various other doctors in the practice had recorded over the years, and the symptoms I'd presented with, to realise that the medical research and qualified people on here were very probably correct.
We had a little chat about it, but I was able to say that, for now, and with the history that I have of these symptoms, even though it is incurable, at least I feel that between us we have the measure of it as it affects me, and it's under control. At least with that diagnosis now on my records, it may make any surgeons, or 'Dr. Gods' I might encounter later on, pay attention and listen to me when I tell them my back's a bigger concern to me than the cancer!
Had a long chat on the phone tonight with Andrew, which was nice, although he probably thinks I burned his ears a bit on a few things [;D] Aim to pass on some more stuff of Andrew's to my doctor, who seems to have certainly eaten his words now about my oedema getting worse on IBT! He's really amazed how much it's helping me and has seen the evidence in front of him, along with the records of my stats to back it all up. I don't think he has ever been able to actually SEE the bones in my legs before, but now I can even feel the old chip's and injury sites on my shin bones and from riding accidents I've had (kicks and various collisions with jumps/fences etc) that date back to my teens!
One more thing that I have noticed, and was told that IBT can help - my eyesight seems to be improving! Yes, really! Weird as it sounds, I was borderline for needing glasses to drive with last year when tested, but couldn't see the instrument panel dials well enough to read them clearly, as I'm very long sighted. Today, my specs kept steaming up with all the rain, and when I drove from the fields and seeing to the horses up to the doctor's, I took the specs off and suddenly realised I could read the numbers on my speedo!
Whatever, despite having had it confirmed about the arachnoiditis, I feel really good at the moment. Nothing's really changed, anyway regarding the back, and because I've lived with it for years anyway, so there's no point getting down on that score. Better, surely, to look at the positives that can result from the diagnosis, and all the other things that I feel are coming along better.
-
Today, I am definitely having a 'weak and wobbly' day. Immune system likely on the floor, I guess. Started shivering last night and just couldn't stop. Crawled into bed with a heat pad and two dogs, plus extra jumper and two duvets... what a shape to get into, eh? Crawling around from one bit of furniture to the next today.
Hard to believe what a difference a few days can make. Think I'll hibernate until the system picks up again! [;D]
-
Today, I am definitely having a 'weak and wobbly' day. Immune system likely on the floor, I guess. Started shivering last night and just couldn't stop. Crawled into bed with a heat pad and two dogs, plus extra jumper and two duvets... what a shape to get into, eh? Crawling around from one bit of furniture to the next today.
Hard to believe what a difference a few days can make. Think I'll hibernate until the system picks up again! [;D]
Yes..Rest you need. If you need anything else that I can help you with... Please don't hesitate...
maybe a goofy story or two or just a hug...There with you anyways.. you know.. please rest up and dream sweet dreams... tonight... by the way ...Stanford is known for quality care but should also be known for some seriously brutally handsome young Doctors!!! Lol....
Put on some good music and relax..... I'll be here when you are feeling some better....
hee hee as if thats any consolation. .Lol... Keep your chin up! Feel better soon Alison... Hugs to you!
-
Now, a nice pic of Raphael Nadal's muscles just might work wonders, Karen! [;D] I felt sorry for him being beaten by Andrew Murray in the US Open the other day - and that even though I'm part Scot! (Blame it on my hormones, I guess! Lol)
Yes, you are right, Karen, I do need extra rest at the moment. Went to bed early last night, then woke up at 5am this morning. A friend came in to lend a hand around 9.30, and left about noon, after which I felt ready again for another nap, and slept most of the afternoon, too. Will be ready for my bed again soon, too.
At least this should pass by next week, and as my immune system bebuilds itself again.
For now, though, I'll just try and listen to my body and go with the flow.
-
Now, a nice pic of Raphael Nadal's muscles just might work wonders, Karen! [;D] I felt sorry for him being beaten by Andrew Murray in the US Open the other day - and that even though I'm part Scot! (Blame it on my hormones, I guess! Lol)
Yes, you are right, Karen, I do need extra rest at the moment. Went to bed early last night, then woke up at 5am this morning. A friend came in to lend a hand around 9.30, and left about noon, after which I felt ready again for another nap, and slept most of the afternoon, too. Will be ready for my bed again soon, too.
At least this should pass by next week, and as my immune system bebuilds itself again.
For now, though, I'll just try and listen to my body and go with the flow.
OH my He is baby faced and young enough to be one of my children! OH MY!! He is cute! LOL..
Yep I blame lots on the Hormones.. LOL... Just kidding...but maybe not!
I am glad you are listening to your Body.. sometimes it takes a bit longer to rebuild that immune system.. so really rest!..
I have finally gotten some good sleep at odd hours but sleep none the less and it is good!
Well I hope you rest good tonight and have a good day tomorrow... I missed physical therapy this morning due to lack of sleep and a headache.. I finally got to sleep and slept soundly.. so much so I woke ten minutes before an 11:00 am appointment that was 35 minutes drive away.. so I called and will go on Thursday!
I have woken with a headache for three days even after just nodding off for minutes.. I think it was the lack of sleep... Feel slightly better head wise this evening!
Big Hugs to You and feel better!
karen
-
Hope your headache's now disappeared, Karen?
It turned out that I'd managed to inflame a spinal root nerve rather well, and after paying attention to one of the cancer doctors, who was concerned about me taking the aspirins at the same time as the chemo would be affecting my blood! Now the next chemo cycle's had to be delayed a week while I get the spine back under control again! [::)]
Ended up having to get my doc to do a house call yesterday, and he's now prescribed Gabapentin to try and damp down the muscle spasms, as I've been feeling as if a horse has booted me in the ribs, and as a result of all the cramping chest spasms!
Yesterday I felt as if I'd an alien attempting to chew its way out of my armpit and where the last lot of surgery was! (Try explaining that to a doc and watch the cogs turning and him wondering if he should send for the men in white coats with the straight jacket! [:o] ) I am just glad it was my own doc on duty, as he, at least, knows what I mean! [;D]
-
(https://www.thenakedscientists.com/forum/proxy.php?request=http%3A%2F%2Fbestsmileys.com%2Fhugging%2F6.gif&hash=2c7969293b776ce58efb12aa528085f8)(https://www.thenakedscientists.com/forum/proxy.php?request=http%3A%2F%2Fbestsmileys.com%2Fhugging%2F3.gif&hash=640757aa312654e8f7081fd3fab74352)
-
Hope your headache's now disappeared, Karen?
It turned out that I'd managed to inflame a spinal root nerve rather well, and after paying attention to one of the cancer doctors, who was concerned about me taking the aspirins at the same time as the chemo would be affecting my blood! Now the next chemo cycle's had to be delayed a week while I get the spine back under control again! [::)]
Ended up having to get my doc to do a house call yesterday, and he's now prescribed Gabapentin to try and damp down the muscle spasms, as I've been feeling as if a horse has booted me in the ribs, and as a result of all the cramping chest spasms!
Yesterday I felt as if I'd an alien attempting to chew its way out of my armpit and where the last lot of surgery was! (Try explaining that to a doc and watch the cogs turning and him wondering if he should send for the men in white coats with the straight jacket! [:o] ) I am just glad it was my own doc on duty, as he, at least, knows what I mean! [;D]
Hi Alison.. It come and goes.. been getting them in the mornings and in the late evenings seems to be spiky blood pressure! I am keeping record and it seems to be starting when my blood pressure has risen!
OH dear.. thats not good.. I hope that you a have been able to get it under control this last week? I am sorry that it has been so very painful...I have never heard of
Gabapentin, is it a muscle relaxant? I am so sorry the chest spasms are terrible if they are anything like mine... They are uncomfortable and very painful. I wish you so much better!
I would and do known exactly what you meant by that..You describe things similar to the way that I do.. nice job! That is miserable pain and I wish I could do something to help you with it... I cry a lot.. and try all sorts of things but when you get off on your pain meds you tend to get a lot of bleed through pain and then its hard to get it under control again... which really sucks...
-
Hope your headache's now disappeared, Karen?
It turned out that I'd managed to inflame a spinal root nerve rather well, and after paying attention to one of the cancer doctors, who was concerned about me taking the aspirins at the same time as the chemo would be affecting my blood! Now the next chemo cycle's had to be delayed a week while I get the spine back under control again! [::)]
Ended up having to get my doc to do a house call yesterday, and he's now prescribed Gabapentin to try and damp down the muscle spasms, as I've been feeling as if a horse has booted me in the ribs, and as a result of all the cramping chest spasms!
Yesterday I felt as if I'd an alien attempting to chew its way out of my armpit and where the last lot of surgery was! (Try explaining that to a doc and watch the cogs turning and him wondering if he should send for the men in white coats with the straight jacket! [:o] ) I am just glad it was my own doc on duty, as he, at least, knows what I mean! [;D]
Hi Alison.. It come and goes.. been getting them in the mornings and in the late evenings seems to be spiky blood pressure! I am keeping record and it seems to be starting when my blood pressure has risen!
OH dear.. thats not good.. I hope that you a have been able to get it under control this last week? I am sorry that it has been so very painful...I have never heard of
Gabapentin, is it a muscle relaxant? I am so sorry the chest spasms are terrible if they are anything like mine... They are uncomfortable and very painful. I wish you so much better!
I would and do known exactly what you meant by that..You describe things similar to the way that I do.. nice job! That is miserable pain and I wish I could do something to help you with it... I cry a lot.. and try all sorts of things but when you get off on your pain meds you tend to get a lot of bleed through pain and then its hard to get it under control again... which really sucks...
I hope it gets better soon and the pain gets to being more manageable.. I know how hard that can be.. Hang in there Alison.. Lots of good thoughts coming to you everyday!
-
(https://www.thenakedscientists.com/forum/proxy.php?request=http%3A%2F%2Fbestsmileys.com%2Fhugging%2F6.gif&hash=2c7969293b776ce58efb12aa528085f8)(https://www.thenakedscientists.com/forum/proxy.php?request=http%3A%2F%2Fbestsmileys.com%2Fhugging%2F3.gif&hash=640757aa312654e8f7081fd3fab74352)
Group Hugs are way nice!
-
Thinking about you and sending get well wishes... Please feel better soon Alison!
-
Thanks, Karen. Seem to finally have the spasms back under control thanks to the extra week off from the chemo cycles, when I've been able to take the aspirins as an anti-inflammatory, but am very wary of the new medication. It was originaly designed to help epilepsy sufferers, and has some unpleasant side effects that I can do without, so don't aim to take it unless the back flares again, and then only if not alone in the house! (It zombie's me!)
BTW, sorry for the delay replying, between PC problems, the inflamed spinal root nerve, and so much to do here, I've just not been online as much as I normally would have.
I've also been busy trying to clear the spare rooms upstairs, but still have much to do - and another chemo cycle to start tomorrow, so likely won't be feeling too well for a bit again soon. [::)]
Hope things are as well as they can be with you?
-
yes I am good.
happy you have it under control for now and sort that this next session is going to make you sick again..
sounds like you have been up to.. about the same as me...cleaning house throwing out junk to try to reclaim the last twenty six years of my life by getting rid of Junk... Kids stuff etc... getting the rooms back and changing everything!
please rest some and take care.... good thoughts for a good week!
karen
-
Something like that, Karen! I have started a 'Disaster Blog', as my son and grandson have now moved in! [::)]
'D' Day Landings Blog (http://petcraftproject.proboards24.com/index.cgi?action=display&board=blogs&thread=8526&page=1)
Thank goodness they will be on holiday next week! [;D]
-
A disaster blog eh? Well I just registered and am awaiting approval by a nice staff member!
Hope the company in the house will be nice and not too overwhelming..
Happy Vacation to them and You!
-
I used to say I lived in a state of chaos, Karen - now I am learning what chaos is really like! [::)]
Bought my son a birthday present today - a laundry basket and a packet of washing powder. His answer to that was that it wasn't his birthday yet... If he wants his clothes used as floor cloths, then he's welcome to keep his gift unused until his birthday next month. If not, then I'd severely suggest he learns to use it early! [:(!]
The jeans left on the bathroom floor have now been kicked around the base of the toilet bowl. IF it is splashes from the flush that soaks the floor there, he won't mind wearing his jeans again without a wash, 'cos that's the only one they're going to get until he washes them.
I have a bet on that they will still be where they are on Monday morning when he's looking for work clothes... [;D] I might even put his clean washing there for good measure, too! well, it's obvious that he thinks the place for clothes is the floor. [8D]
Had the fourth chemo cycle today and had to be up at the crack of dawn in order to catch up on chores I needed to do before then, so feeling really tired and more than a little grotty tonight. Think I'll go to bed. I might then remember the funny comment one of the nursing staff at the cancer hospital came out with today...
Hope all is as well as possible with you, Karen?
-
Hope all is well with you, Karen?
I'm finding that the chemo seems to be taking a greater toll on me the further I get into the cycles. Only two more to go, but my nails are now showing the effect of the drugs, amongst other things. Still managing to keep busy, though. :)
-
I am here.. I am sorry your chemo is finally catching up with you.. I know how that goes for sure.. Please remain strong.. I will be counting the last two down with you and sending along lots of prayers and good wishes for the best outcomes..
Busy is good I hope things are smoothing out with both the kids in the house.. I do know about chaos... My house was awful forever when the kids were here.. I must say it is pretty lonesome these days.. I have to bribe my children with apple pie or dinner to get them to visit.. the oldest boy is really good at coming and eating with me.. he likes food.. and he has learned to cook pretty good for a new bachelor.. kind of like his Dad that way and me.. He can cook! Yayyyyyy! Now if I can get him to stop subsisting on beer when he is broke.. that would be good too!
I have been occupied painting a Barn, replica... washing my big picture glass windows and resting tons and going to the Doctor,Physical therapy twice a week,nutritionist, a councilor twice a week, and hospital runs lots the last few weeks, including a surgical support group meeting 2 hr. and 15 minute every two weeks.. And visits to the Lawyer for my social security, and a lawyer for some personal.marital things...so my life has been very busy.. I am worn out even after resting lots.. I have a 2 hour 15 minute session starting at 9:45 this morning and ending at twelve... Then helping my daughter with her Halloween Costume fitting!
Hoping thing get better soon for you.. and think of you often.. sorry I had not responded yet to your post.. I did however read it.. but wanted to find the right time to right you back... How are the horses?
I hear the weather has been a bit wet and nippy? Are you okay there for heat etc... Have you had snow...?
-
Hi Alison..
I have been missing you and thinking of you... Hoping you did well through your last two Chemo's...
I have not seen you on so am naturally a bit worried that you are really really worn out!
I am sending lots of hugs and healing wishes for you to feel better real soon..
Yours,
Karen
-
Hi Karen
Alison has some computer problems and is trying to get them sorted.
-
Hi Andrew.. Thanks,
Take care.
-
Thanks, Karen and Andrew.
I have finally managed to get this old relic of a borrowed PC to access here! My usual PC needs a new HD and the engineer is dragging his feet, I fear.
Have had my latest (and last) chemo cycle postponed for a week, as I picked up a cough/cold from my grandson. Mixed feelings over that, as I was looking forwards to the cyscles finishing and being able to move on. My first radiotherapy appointment's already booked for 29th December, though.
With a bit of luck things should have calmed down on the work front by then, and I'll be able to relax more. [;D]
Hope things are okay with you, Karen? I have been thinking of you. [;)]
Andrew, one of these evenings I'll give you a ring. When would suit you best?
-
Hi Alison...
I am ok.. no worries.. wish you were feeling better...and they had not had to postpone your chemo round!
That can be depressing..Hang in there....Sounds like they are taking good care of you with your radio treatments starting in Dec.
I just had a whole series of new lab tests done for Stanford... they haven't let me know yet what came up this time... they are supposed to call me to reschedule a trip down to measure the aneurysms and talk to me about test results... hate waiting.. but the worst thing I can think they could say is that treatment is not working... and I have heard that before.... makes me anxious and nervous..... and am already frantic...
I see you have been busy wth your auction... hope its going well. Its good you are staying busy.....
I hope everythings gets straightened out and you feel well soon...
Take good care...
Karen
-
Hope you've had your results by now, Karen and that they were positive news. I've been thinking of you.
Have been incredibly busy lately, and still am. There seems no end to it all, but, if not managing to get through things at my usual pace, am keeping steadily busy. A bit like wading uphill through a lake of treacle and an element of an obstacle course materialising each time one blinks! [;D]
Had the last chemo yesterday, and have had some nasty, dry skin problems, although one of the TRPD group members who has a website selling various cosmetics and things sent me a stack of super handcreams to try. One in particular is a Herbal one formulated for really bad, chapped, cracked and dry skin, and that seems to be doing the trick! :) It's quite greasy, but my hands soon absorb it, the state they are in, and there must be something in the recipe - an essential oil or something - that is also easing the arthritic aches in my fingers and thumbs, now we have much colder, frosty weather here. Rabbits on the hills must be keeping warm down in their burrows, as the local foxes have been raiding allotments in daylight hours and killing poultry. They had five of mine the other day, and came back earlier today and took another eleven, including two young ducks that were laying well. I only have four ducks, two drakes and six hens left uninjured, and three birds I found that look like they won't make it through the night, they were so traumatised, if only seemingly slightly injured. The allotment looked as if it has been snowed on, with all the white feathers, although further down I came across more darker ones, but only four bodies remained, so the fox must have killed and returned for more of the bodies.