My 2010 resolution - AVIOD BECOMING DISABLED

[mdmc]

I've been struggling to get my Rheumatoid Arthritis under control for a couple years now.
I am losing this battle and it seems inevitable that I will eventually be disabled by this illness.
I currently have a hard time walking. My right arm no longer straightens out (it is crimped at the elbow). I have a very hard time using my right arm for anything. It is always somewhat painful. Sometimes the pain is unbearable.
The pain wakes me up in my sleep (when I move my arm, for instance).

It seems that it will only be a matter of time before this RA brings me down.

I have health insurance through my employer. I cannot afford the medical treatment prescribed to me because it is not affordable. I tried to complete a week's worth of OT treatment, but $120.oo later my arm was worse off. The OT said to me, "You should stop doing these exercises (that she had prescribed for me). These exercises are making your arm worse." She gave me new exercises, but they do nothing to help.

My neurologist (another $40.oo per visit) and my rhumy ($40.oo) have given me cortisone. It helped a little, for a couple of days. They gave me exercises to do, which I do several times a day.

The pain continues, and I don't know what to do.

So that is my goal. I plan to try to keep my employment, and avoid being disabled. If anyone has any thoughts or advice, I would love to hear it.

[greenbriar]

1. dearest MDMC I will send very positive thoughts and prayers your way

I truly hope you get what you need to make your life better.

[mdmc]

2. thank you kindly my friend

I really either need to make more money (so I can afford medical treatment) or give up, go on welfare, and be able to receive medical treatment via medicaid.

Thanks for the reply and God bless..

[rebel with a cause]

13. Doubt you would get welfare unless you are over 65

or have a child under 18. You would have to get disability which is not the same as welfare and is not that easy to acquire. Once you are approved for disability you are then automatically given Medicaid and only then do you receive it. It too is not that easy to acquire. At least not in my state.

I wish you luck in not going on disability but perhaps you should revise your resolution/prayer to be "I want to get through the year without having to go on disability, but if I need disability I pray that I can get it." It takes years for some people to get on it. I had to almost die, then it required a very determined case worker, doctor and me working our butts off to get it for me.

Good luck.

[dysfunctional press]

3. embrace disability, don't avoid it.

i'm sorry for your pain...i've been there.
i have ankylosing spondylitis, and i became officially 'disabled' almost 12 years ago. i can't imagine how unbearable my life would be, if i hadn't chosen to go that route.
has anyone recommended enbrel as a medication for your condition?

[mdmc]

4. thank you for your reply

I take an injectable form of enbrel along with methatextrate. The problem is that my elbow became damaged before the meds could work their magic.

So now I am trying to maintain. I work about 50 per week, and earn about 35500 per year. I try to get as much medical treatment as I can, but I cannot afford everything that is prescribed or recommended.

I have had success with meds, exercise and diet. I only hope I can feel better. That is the real goal.

If being on disability means that I can feel better.. i will do it.. whatever it takes..

Have a great New Year dysfunctional press.. peace and low stress..

[dysfunctional press]

7. exercise and diet are what helped me most...

my condition went un/mis-diagnosed(as 'reiter's syndrome'- both have the same hla-b27 genetic marker) for almost 15 years. once i got a proper diagnosis when i was in my early 30's, the AS was already pretty well advanced, and had caused a lot of irreversible damage. the only 'meds' i had to treat it during those years were ibuprofen and pot.

after being diagnosed, i was on methotrexate for awhile- but i found that it made me incredibly depressed- it was like an express elevator down to the dark and scary place, so i stopped it, and my dr switched me to steroids and stronger pain meds(oxycontin). i also did some online research, and found a research physician in london who had made a connection between my condition and dietary starch. by cutting starch COMPLETELY from my diet(a VERY difficult thing to accomplish), i was able to reduce my pain levels dramatically, and hopefully head off some of the worst effects of the disease, long-term damage-wise. i'm mostly in 'remission' now, but the damage is done as far as my spine is concerned(the main target of AS, as opposed to your RA(which is just as insidious, but targets other joints, iirc..?).
i had a rheumy who wanted me to try enbrel- but i didn't do so for several reasons- it wasn't 'designed' for AS, but rather for RA; the side-effects scared the shit out of me(doesn't it basically turn a big part of your immune system 'off'...?) ; and also because i didn't have insurance and couldn't afford it at the time.

i wish you the best of luck with your struggle- if disability is an option, realistically and financially, i would definitely recommend looking into it. for myself- my wife and i had/have no kids, and she had/has a full-time career as a graphic designer(her last job went away in september, but she landed a new gig yesterday :woohoo:), so it was a much easier decision for me to make. AND- if you do decide to go the disability route- GET A LAWYER, one that specializes in SS disability. and DO NOT get discouraged or give up if your initial claim is denied- almost everyone is. i got mine on the second try.

best of luck on finding your best path through the coming new year.

[grilled onions]

5. Maintain That Medical Connection

I have PA(a sort of cousin to RA). Had it since '65. My problem was back then my doctor died and no one told me that you must maintain medical help,therapy,meds--whatever the rest of your natural life. I was not informed of such so my arthritis went like wild fire,crippling here,deforming there,frozen shoulder along the way etc. By the time I did get back to the medical world I had a lot of damage that could not be undone(not that there was any guarantee that I would not have had some damage anyhow--arthritis can be very destructive. Being in that pre exisiting nightmare,the cost of meds,treatment, etc you can only do so much and often the workplace is not very understanding about your limitations either. Knowledge is power and you need as much knowledge as you do the strength to fight this battle every day. Reading how others tackle these problems is also a big help.

[mdmc]

6. Paying for medical treatment is a priority for me..

Keeping up with my RA is pretty much my main mission in life at this time other then being a good person and a good family man.

[david13]

8. Exercise and diet for me too. Sometimes I walk a bit and get into

some excruciating pain, but I sit for a minute, very briefly, and walk some more, and it is gone.
I think the real name for it is rigor mortis.
As the exercise is the real cure for me. Which includes endorphins, produced thereby. If I don't exercise, well, I just have to.
As I will take no pills, shots, drugs, etc. Rare as hounds teeth I will take a tylenol. Rare.
Maybe the real name is rust. I get all rusty and stiff.
Mild exercise. Walking is very good. But also bicycle.
dc

[Bertha Venation]

9. No advice, only thoughts.

I am sorry to hear that you're suffering so. I have good thoughts for you, thoughts for comfort and endurance, thoughts for hope. :hug:

[Sanity Claws]

10. I wish you luck in fighting the good fight

Have you checked into alternative therapies? I don't know what they are for RA but perhaps Traditional Chinese Medicine could offer a different type of treatment.
Maybe a google search will turn up some herbs or nutritional therapy.

[lazarus]

11. work as long as you can, but

don't be reluctant to file for disability as soon as you have to. I waited too long, and lost a couple of years' worth of disability checks. (I've got psoriatic arthritis, fibromyalgia, ankylosing spondilosis, and other stuff.)

Keep up the good fight.

[laylah]

12. I am told one must be

unemployed for 2 years due to the disability. Is there any truth to that?

To you and the OP, my thoughts and prayers for a healthier, pain free 2010 :hug:

[lazarus]

14. by the time you've gotten your hearing

you'll definitely be unemployed for 2 years. :) I've never heard that, though.

[dysfunctional press]

15. you qualify for medicare two years after being found disabled, iirc...

but most of the time, once you're approved for disability, your 'finding of disability' date is retroactive to when you started the process, so there's usually not much of a wait.

[Capn Sunshine]

16. isn't there a scrip for RA that is effective?

I could have sworn there was a new prescription drug that minimized the effects?

[Boudica the Lyoness]

17. I have something like RA

I'm trying different meds right now but the side effects scare me.
Have you considered elbow replacement? I have my ankle totally replaced in March 2008. I had suffered in a great deal of pain for decades and had got to the point I couldn't bend it at all. The ankle replacement was awesome and I can walk again. I had to fight the insurance company first to get it approved.

[UTUSN]

18. Best wishes. Don't know whether this is reliable, but somebody claims she moved to a COLD climate

and that this makes her RA tolerable/manageable. I don't know about RA, but it's counter-intuitive to whatever I've heard about "plain" arthritis.

As for exercise - again, counter-intuitive - I was told that my treadmilling for 9 years daily led to a wearing down of the great toe joint in the foot where I have had gout attacks before, and that the gout triggered a depositing of calcium, a painful bump there.

Since we are constantly told that WALKING is so good, now I was told to use a stationary bicycle because it keeps the feet flat instead of making the toe joints rub against one another that treadmilling/walking does. Ellipticals offer the same low impact on the feet, but trade-off with stress on the hip joints. With the bicycle, you're sitting, not standing on the hips.

[KamaAina]

19. Sounds to me like that ship has already sailed

by definition, RA is a disability.

Welcome to the club!

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