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Author Topic: Can I donate my still-living (but somewhat worn) body for medical research?  (Read 74651 times)

Offline Karen W.

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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!



 

Offline OldDragon

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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.

« Last Edit: 20/06/2008 12:32:40 by OldDragon »
 

Offline SIMike

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A little peace offering, perhaps?

newbielink:http://www.oldielyrics.com/lyrics/jefferson_airplane/comin_back_to_me.html [nonactive]
 

Offline OldDragon

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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

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.'
« Last Edit: 22/06/2008 18:39:22 by OldDragon »
 

Offline Karen W.

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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

 
 

Offline OldDragon

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(((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
« Last Edit: 20/06/2008 17:47:50 by OldDragon »
 

Offline OldDragon

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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. ;)

« Last Edit: 21/06/2008 23:35:56 by OldDragon »
 

Offline Karen W.

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(((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!
 

Offline OldDragon

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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.  ;)

« Last Edit: 22/06/2008 21:11:53 by OldDragon »
 

Offline OldDragon

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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.
 

Offline Karen W.

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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...
 

Offline OldDragon

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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
 

Offline Karen W.

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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!
 

Offline OldDragon

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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.
 

Offline OldDragon

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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
 

Offline Karen W.

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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!
 

Offline OldDragon

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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)
« Last Edit: 28/06/2008 13:33:28 by OldDragon »
 

Offline Karen W.

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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!
 

Offline OldDragon

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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 )
« Last Edit: 02/07/2008 15:19:52 by OldDragon »
 

Offline Karen W.

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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.


 
« Last Edit: 02/07/2008 14:21:39 by Karen W. »
 

Offline OldDragon

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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... ;)
 

Offline Karen W.

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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.
« Last Edit: 02/07/2008 16:16:00 by Karen W. »
 

Offline Karen W.

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Hey I wonder if that dehumidifier will help ease the aching from the weather?
 

Offline OldDragon

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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
« Last Edit: 02/07/2008 22:14:47 by OldDragon »
 

Offline Karen W.

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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....
 

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