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Author Topic: Can I donate my still-living (but somewhat worn) body for medical research?  (Read 74605 times)

Offline Andrew K Fletcher

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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.
 

Offline grumpy old mare

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Thank you!
(I don't think I have Arachnoiditis)
 

Offline grumpy old mare

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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.
 

Offline Andrew K Fletcher

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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.
 

Offline grumpy old mare

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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.?
 

Offline OldDragon

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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. ;)
 

Offline Andrew K Fletcher

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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
« Last Edit: 15/06/2008 16:49:47 by Andrew K Fletcher »
 

Offline OldDragon

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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.
 

Offline Karen W.

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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.
 

Offline SIMike

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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.
« Last Edit: 16/06/2008 02:39:05 by SIMike »
 

Offline Karen W.

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Her last post was 15/06/2008 22:36:32
 

Offline Karen W.

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Regaurding this..

Old dragon
Quote
"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
« Last Edit: 16/06/2008 06:50:02 by Karen W. »
 

Offline grumpy old mare

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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...
 

Offline OldDragon

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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!
« Last Edit: 16/06/2008 09:40:22 by OldDragon »
 

Offline Karen W.

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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...
 

Offline Andrew K Fletcher

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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.
 

Offline OldDragon

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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 - 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.
« Last Edit: 16/06/2008 18:37:41 by OldDragon »
 

Offline Karen W.

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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!
« Last Edit: 17/06/2008 08:15:35 by Karen W. »
 

Offline OldDragon

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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.
« Last Edit: 17/06/2008 14:05:32 by OldDragon »
 

Offline Karen W.

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*tears*... Thank you for your words tonight...
 

Offline grumpy old mare

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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)
 

Offline OldDragon

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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

 

Offline OldDragon

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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. ;)
 

Offline Karen W.

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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?
 

Offline OldDragon

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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. ;)
« Last Edit: 19/06/2008 16:21:11 by OldDragon »
 

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