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Old 08-15-2009, 10:13 AM
 
Location: Somewhere out there
9,621 posts, read 6,567,007 times
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Default Arthritis as a Terminal Disease

I have come to this unmistakeable and inescapable conclusion about my severe arthritis and complictions as a result of much painstaking and pain-wracked late-night consideration. For the past several years, in fact.

I developed degenerative osteo-arthritis, complicated by (mixed in with?) psoriatic arthritis, about twenty-five years ago. It was, of course, minor to begin with, but over the years it intruded into my life more and more beginning with initial stiffness, but eventually resolving into a general feeling of maliase and internal disorder coupled with growing disabling pain.

It eventually forced me to downgrade my career positions, from a very productive cand enjoyable fast-track path headed into senior management in automotive engineering, down, eventually, to a field engineering position (so I could dial back on my degree of physical and mental effort), and eventually, to being on permanent disability. (That finality is, in and of itself, quite psychologically debilitating)

I have tried ALL the therapies, and now, Humira, steroids and pain meds are it. I am awakened many times each night by "positional pain" despite having tried several types of beds, meds and exercises. Exercise is out of the question; I've tried it. The "next day consequences" are unacceptable; I have to spend it in bed recuperating from even the least amount of effort. (a mere 100 yard walk, for instance). Physical therapy? The young, strong physio-therapists can not begin to understand what people like me are going through, and you cannot "work through the pain". Yoga? I can't even walk, much less get down on the floor to stretch my leg around my head! Because after all, bending a ruined joint or stretching a calcium-infused tendon doesn't work.

My joints are, relentlessly, corroding and collapsing. Not only in the usual suspect areas like knees and wrists and feet, but also most of my spine, my neck, my finger knuckle joints. None of the typical RA swelling; just pain and the resulting reduction in motion. and my overall feeling of malaise.

The various meds have chased me into a pharmacological corner, the steriods and inactivity and age having recently added Type II diabetes to the mix. When I dial off the steroids, my diabetes almost disappears! But then, I can't move because of the resulting vast inflammation. Of course, all of this fun has also led to my being clinically depressed.

This is also very hard on the family, because who wants to hear someone's endless litany of comments about pain, how I feel "this morning", or how my night was, or what variation of my meds I'm trying this week, or or or.

I can no longer do anything "fun" with my friends, or participate in any of my long favored activites. I mostly just hang around at home, taking naps (from which I am of course awakened by the pain after only an hour or so).

Oh yea; I forgot: the meds have also given me fairly reliable kidney stones. So far, I've passed over 140 of them. 140 kidney stones! Trips to the hospital, catheters, "stents"; oh, believe me, it's a lot of fun!!!! And please note: I'ts nothing like having a baby, as is the old wive's nonsense tale. How many women do you know who have had 140 babies, sometimes every three months?)

So, I've concluded this is far worse than , say, being told I have some form of terminal cancer for example. With that diagnosis I could plan my remaining days, do a few things I'd always wanted to do, say goodbye to friends. If I did that now, my family and friends would be alarmed, now wouldn't they?

My specialists have pretty much thrown their hands in the air, my new health insurer won't give me access to the Humira, and argues about the pain meds (OxyContin™ & Humira are not "on their formulary", so tough luck, huh?) , and my other specialist says the steroids are really damaging me, so I'd better get off them! Oh goody! there goes the anti-inflamitory med!

Medical science, coupled with the insurance industy's arrogant money-mongering policies, have, apparently, failed me.

Frankly, I see that I won't be here too much longer. My body (and my psyche) can't function like this. Arthritis, as I have it, is definitely a terminal diagnosis. I see nothing but endless, worsening pain and suffering. And depression.

I've therefore seriously considered a more active and positive approach to ending it all, and why not? I've had a spectacularly interesting life, and at this point, it's only going into a dark, horrid, pain-wracked hole, and dragging my family with me.

I mean, would any of you want to watch such a deathly, pain-wracked progression in someone in your family, your father or mother? What happened to dignity?

But you never know. City-Data has a wide readership, and perhaps someone has had better luck with some unique form of treatment. Please, though, I have graduate degrees in biochemistry, genetics, etc. I absolutely do not believe in mixing up a special tea made from mixing the roots of the dandelion with poodle urine, and filtering it all through a bag of discarded cat hair. Nope; where's the science?

More importantly, to me, where's the hope? Right now, I see none.

 
Old 08-15-2009, 10:34 AM
 
Location: NW Arkansas
3,981 posts, read 5,210,232 times
Reputation: 3651
I can so identify with what you are saying. My problems are both Osteoarthritis and Fybromyalgia Syndrome, and now I apparently have Reactive Hypoglycemia. The only thing I seem to have under control is my excessively high blood pressure.
I have frequently wished to "throw in the towel" but my faith keeps me from doing that, as well as my love of my family. I would not want to burden them with that!
How old are you? I am almost 77, and have had most of my conditions for at least 40 years!
 
Old 08-15-2009, 11:25 AM
 
Location: Somewhere out there
9,621 posts, read 6,567,007 times
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I appreciate your response, Towhee.

I'm 62 years old. The major "expression" of these conditions has been over the past ten years, but the past three have been horrible, and the past 6 months, as I've tried to dial off the dreaded steriods (Decadron, switched to prednisone) have been purely hell. This last week? Hugely unpleasant and depressing. My wife has even turned away from me; she's no doubt very tired of it all. We no longer have any fun together; we really can't plan anything because of my physical limitations.

Sadly for me, I suppose, I have no Christian faith, I being a long-time scientist, engineer and biologist. I do not intend to glom onto Christianity as a last ditch effort either. It would reek of desperation, in my mind.

Hey; we all die sooner or later, right? In the old days, we crawled off into the woods and let nature take it's course. My 97 year old dad is still around! Amazing! Some go earler than others! Medical science is, these days, fiercely intent on keeping the individual cells in the body alive through whatever heroic means. But they ignort the consequences.

And in doing so, they destroy any residual dignity the individual has left.

I wonder if there's any open chat rooms or blog sites or forums that discuss Death With Dignity. I was deeply touched by the recent story of tha British symphony conductor and his terminally-ill wife.

Dignity and death - Worldnews.com

Brave, respectful and dignified.
 
Old 08-15-2009, 11:59 AM
 
Location: NW Arkansas
3,981 posts, read 5,210,232 times
Reputation: 3651
I think I was about your age when I was suffering the worst. I prayed and prayed for the Good Lord to take me home.
I am thankful my husband tolerated my groans and moans! Now he is 83, and becoming more and more demented, as well as almost deaf, so I have that to cope with also!
The only advice I can give you, if you do not choose to put your trust in God, is to hang in there. I think you will eventually have some relief...at least some moderation in the pain.
Perhaps a differant doctor could help. Have you tried others? Have you researched the web for help? I do a lot of googling for my symptoms, and for the treatment for them. Naturally, you cannot take all that you read here as the truth, but there are many reliable sites.

I believe you can find forums that discuss most anything you are interested in....including the "Death with Dignity".
I have no desire to have doctors prolong my life, when my time comes. I am inclined to think that is a form of cruelty!
 
Old 08-15-2009, 01:30 PM
 
8,424 posts, read 23,531,305 times
Reputation: 5879
I suggest looking into fasting, detox and nutritional change.

Just a techi thing with the fasting: When you fast your body releases an anti-inflamatory hormone that will help with your issues. Because you used steroids you should not detox or fast for a year but you can start cleaning up your diet now.

Have you tried sunlight therapy for your skin or dead sea salt soaks? They can help. Also neem for your skin condition.

There are many herbal/natural treatments for inflammation. I would actually try looking into them instead of putting them down. Those have been what help people who are not helped through traditional western care methods.I would not mix anything into your body with all the issues you are having at the moment though.

Do you eat fake sugar?Drink milk? Drink tea or coffee? Are you overweight?
 
Old 08-15-2009, 01:33 PM
 
Location: Mostly in my head
16,135 posts, read 29,204,015 times
Reputation: 11870
Are you being treated by a team at a major hospital or are you being treated by various docs in town who don't talk to each other? I think you need a referral to a teaching hospital where a team of specialists can determine what program you need to be on. For ex., my DD has a friend who was constantly told nothing was wrong (they live in Asheville NC) until she got a referral to Duke Univ Hospital - but only after she wasted away to maybe 90 lbs. Duke found the "something" and she is now doing much better.

So sorry you are going through this. I have degenerative disk disease and my spine is failing slowly. Until people see my walk hunched over, I look like there's nothing wrong with me. I also have no religious faith and I envy people who do. But it's not for me!

Google Hemlock Society if you want some info on dying w/dignity. I have their book, published many years ago, with actual rec'd dosages and how to accumulate them.

A health care power of attorney is needed, for someone you trust to follow out your wishes. I held one for my mother and I knew when the time had come to stop treatment. Her docs wanted to put a pacemaker in a 93 y/o! Why go through the pain of surgery for a few months? There comes a time when we should all die naturally, not forced to live by Man's hand.
 
Old 08-15-2009, 03:01 PM
 
Location: Somewhere out there
9,621 posts, read 6,567,007 times
Reputation: 3624
Default Good info; thanks!

Quote:
Originally Posted by pitt_transplant View Post
I suggest looking into fasting, detox and nutritional change.

Just a techi thing with the fasting: When you fast your body releases an anti-inflamatory hormone that will help with your issues. Because you used steroids you should not detox or fast for a year but you can start cleaning up your diet now.

Because of the diabetes, I took the various diets for that problem quite seriously for a while, and I can say that it is quite a healthy, and in no way unpleasant, diet. Of course, the glucose in my bloodstream cannot cross the cell barrier because, in my case, I'm making lots of insulin but my aging screwed-up cells are insulin-resistant, so the internal feeback mechanism that says you have enough sugar in your cells does not function with me. Like many Type II diabetics, we thus also crave more sugar. Naturally! The cells that need it can't get at it. What a bummer, huh?


There are many herbal/natural treatments for inflammation. I would actually try looking into them instead of putting them down. Those have been what help people who are not helped through traditional western care methods.I would not mix anything into your body with all the issues you are having at the moment though.

I agree with you. I'm originally from Vancouver, Canada, and there is a very large and active Chinese culture there. My best friend is (was?) very asthmatic, and tried "everything" including steroids. Eventually he went to an old Chinese herbalist who gave him three things, one to be made into what turned out to be the worst-tasting beverage (a "tea" infuision) he'd ever put into his mouth, and two things he was to crumble up and mix into oatmeal every morning.

His asthma disappeared after taking the tea for only four days! The other stuff, no apparent effect pro or con. I may visit this Chinese fellow on my next trip up there because after all, arthritis has been around since we climbed down out of the trees (and stopped eating bananas, and started eating meat? Hmmmm...) and the Chinese probably have a treatment for it. Too bad they don't subject any of them to good old fashioned biochemical analysis and research to find out what the key ingredient(s) are.

My older brother diesd of a heart attack in Vancouver when he was only 56 because it turned out, he was "willy-nilly mixing" an array of herbal remedies and that caused a complete loss of his heart's basic rythm maintenance system. Ouch!

Have you tried sunlight therapy for your skin or dead sea salt soaks? They can help. Also neem for your skin condition.

Tried them all, including neem. Actually, Humira, which is a hell-for-broke expensive injectible disease-modifying drug (versus one that simply hides the symptoms) repaired/cured my skin condition completely!!. Four days after the first injection, my skin, which was about 80% involved, occasionally bleeding, and prone to localized staph infections, cleared up almost 100%. Talk about dancing in the streets. After years of light booths, tar baths, smelly ointments & creams, steroid injections and creams, and PUVA, this was truly a frickin' miracle drug!

But Humana (may their managment rot in hell!) denies it to me, and I'm now hoping Abbott Pharmaceuticals (the manufacturer) will help me out. Otherwise, it's about $2000 a month. Can't do it.


Do you eat fake sugar?Drink milk? Drink tea or coffee? Are you overweight?
Yes; Splenda, lots of milk, a cup of coffee (strong, French-press brewed each morning), and am now about 30 lb overweight. About 220lb, but at the height of my Decadron steroid period, I weighed 270. When I graduated from high school and was on the wrestling team, I weighed 170.

I am losing weight now because ( in order) I don't feel very good from my med mix, I'm dialing off the steroids which is making me feel terrible (my body's adrenal system is sut down from 20 years of Decadron/prednisone, so if I don't take enough, I don't get enough at even a normal level. Which hurts!), and I have sorta stopped eating because I"m depressed about all of this.

Finally, regarding a team medical diagnostic approach, I did visit the Mayo three years ago. What an amazing place and process! It's what all American health care should be like. They pegged a number of problems after my two-week stay, where they checked out everything from my toenails to the hair follicles on my head. In the end though, they said, regardless, I had a bad mix of problems, including the aggressive auyto-immune systemic problem. That, coupled with the damage to my adrenal system from the near-two-decades of taking Decadron, had created a monster medical dilema.

(BTW, Decadron is perhaps the most biologically active steroid available. It's used when people have massive brain injuries (car crashes, for instance), or as an anti-rejection drug in transplants, or in some cases of terminal cancer. It pretty much stops inflammation, but it's like using a 155mm Howitzer cannon to kill a flea. It's meant to be used occasionally in cases of extreme arthritis or psoriasis, never every day or in a big weekly dose, as I had been placed on by an errant doctor in Indiana. My big loss, apparently)


I have been in the care of a Seattle clinic Rheumatologist and his endocrinology pal, plus my GP, who has given up on me this last week. Told me to find another doctor, because he doesn't want ot be responsible! Oh well; no-one said you had to be a gentlemen just because you could pass the med exams, huh?

So now, I may go back to Virginia-Mason in Seattle, WA, to see the endocrinologist again. He pretty much threw up his hands last year, and told me that we'd be experimenting. He said I could be someone's great PhD thesis. Wonderful. My heart's desire, to be a lab rat for trying to solve an unsolvable medical situation!

As a PhD level biologist, I've done a lot of reading on the medical literature, and I've come to the conclusion I've outlined in the OP, but I will give it one last try. Frankly, I doubt there's a working solution to all of this. Just as with a diagnosis of pancreatic cancer; it's terminal.

Finally, Hemlock Society, huh? I think I'd heard of them. Thank you so much, everyone. Appreciated. Now, I'm off for a nap because my back's killin' me (ha ha!). [As my wife says, at least I have a sense of humor!]

Peace & Love To all!

Last edited by rifleman; 08-15-2009 at 03:12 PM..
 
Old 08-15-2009, 03:31 PM
 
Location: NW Arkansas
3,981 posts, read 5,210,232 times
Reputation: 3651
I am glad to hear you have a sense of humor. Mine is one of the things that keeps me going.
I haven't added.... I am also suffering Peripheral Neuropathy! All the studies that I have done on that do not sound promising.
Oh well, as my son likes to say: "get tough or die"! I think I am pretty 'tough'.

Now that I have heard what your weight is, I would think losing some of it would help?

I am 5' and weigh 118, just for the record. I don't drink, smoke, or have other bad habits. I don't even drink much coffee, and what I do is 50% decaf, or decaf.

I wish I had the option to go to Mayo's. The doctors around here hardly even look at you.

If you can get past the depression, that will be half the battle.
 
Old 08-15-2009, 03:59 PM
 
Location: Mostly in my head
16,135 posts, read 29,204,015 times
Reputation: 11870
I think the founder of the Hemlock Society is located - or was located - in Seattle or somewhere nearby.

Have you tried Mary-Jane (to keep the mods happy)? It makes a lot of painful conditions bearable.
 
Old 08-15-2009, 04:07 PM
 
Location: Boise, ID
1,355 posts, read 3,794,087 times
Reputation: 828
As someone who has dealt with chronic health issues for half of my 39 years, I can empathize with you in some measure.

I don't have much to add to above except to suggest that you try a competent alternative medicine professional like a naturopath. They do have some ways of dealing with autoimmune disorders that are not entirely explained scientifically. Their treatment methods may or may not work for you but you wouldn't be any worse off. Obviously no one discipline has all the answers or I wouldn't still be dealing with health issues myself! But my quality of life has improved from some of the natural treatments. In your case, it sounds like you haven't got much to lose or many other options.

If you do go the naturopathic route just be prepared that you might feel worse at the start of treatment. Just something to prepare yourself for mentally. Best of luck to you.
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