encouraging stories? | Arthritis Information

 

Hi everyone. I don't get the chance to get online very often, thus my very sporadic posting. I'm wondering if anyone here has any personal experiences to share - particularly those who have gone from feeling hopeless and sick to feeling well enough to work and live a fairly normal life. I am in constant pain, become depressed due to the pain and isoloation, have not been able to work much, am fatigued and sleep constantly and have a pretty poor quality of life. I am seeing a new rheumatologist this morning, as I don't feel I've made any improvement with my old one. I am on methotrexate injections, mobic and cymbalta. I am ready to add a new medication - whatever the doctor suggests (and my insurance pays for). Is there hope that this new medication will make a huge impact? I am also aware that I need to change my lifestyle (ie. exercise every day, etc.). Can anyone share how they went from homebound and hopeless to feeling good? Was there a point where you just couldn't take it anyone and made a change? If so, what did you do? What changes did you make in your daily routine? How quickly did you see results? I'm desperately seeking hope. thanks in advance, jI definitely have some encouragement to share but will have to travel back this way after work.. It' is my lunch hour and time is quickly passing.   I wish you well and I will return. [QUOTE=JuliahRA]Hi everyone. I don't get the chance to get online very often, thus my very sporadic posting. I'm wondering if anyone here has any personal experiences to share - particularly those who have gone from feeling hopeless and sick to feeling well enough to work and live a fairly normal life. I am in constant pain, become depressed due to the pain and isoloation, have not been able to work much, am fatigued and sleep constantly and have a pretty poor quality of life. [/quote]
Julia, I am so sorry you find yourself in such a place. I can offer you my deepest empathy for I too have been in the indigo pits. A combination of medications, including Enbrel, along with psychological counseling opened the portal to a new perspective, a change of attitude, and a life filled with, well, with life.

If I remember correctly you posted a while ago about moving up the medication ladder. Did you have the opportunity to read the replies to the questions you asked at that time?

 It sounds like you have done your research and are ready to take that step. As has been mentioned before, seeing a new and/or another RD for insights, observations, and assessment is very often a very good idea. Congratulations on taking that step.

[quote]Can anyone share how they went from homebound and hopeless to feeling good?[/quote]
I recognized that the ravages of rheumatoid arthritis are more life-changing, challenging, and potentially life-threatening than are the medications used to treat the disease. I also realized that my state of mind, my depression, my sense of hopelessness and helplessness were a shield that allowed me to circumvent my own responsibility in adequately treating my chronic disease.
[quote] Was there a point where you just couldn't take it anyone and made a change? If so, what did you do?[/quote]
In fact, there were several points, each one just a bit more in-my-face and imperative. I listened, truly listened, weighted the advice being offered by my physicians, accepted responsibility for my own well-being and then faced the comorbidity daemons with as much grace and determination as I could muster. I am, unfortunately, still relatively homebound secondary to those comorbidities, but I have been working 30 hours a week from home (however, that _job_ is ending).
[quote] What changes did you make in your daily routine?[/quote]
Some of the changes to my routine where not of my own choosing, but were dictated by the consequences of some earlier choices in treating my RA. Those routines are inalterable. The self-motivated changes are small ones: I  allocate time morning and evening for isometric and isotonic exercises {there is an interesting discussion about ‘rebounding’ that you might find useful}. I spend some portion of each and every day outside whatever the whether/weather and regardless of how much I want to just remain a hermit. I spent several months seeing a psychologist several times a week: now I see her when my mindset shifts downward or depression raises its ugly head. I have learned to talk without restraint or apology to my spouse, my friends, and my family. I no longer hold the shield of my hopelessness and helplessness against my heart to keep everyone distanced.

I come here to share my story, my ups and downs, my triumphs and my defeats with people who A.) understand B.) listen C.) offer no judgment D.) make concrete and meaningful suggestions E.) are supportive and substantiating.
[quote] How quickly did you see results? [/quote]
It took some weeks, but I continue to see results each day: sometimes those results are triumphs, sometimes they are defeats, but I am living and filled with the joys of life.

Best wishes, Shug

ETA the link for the discussion on rebounding.
Spelunker2009-10-27 09:25:28 Welcome Julia!

wanttobeRAfree2009-10-27 10:46:34This is what I wrote when I first joined this board, I'm still here, so guess that can be seen as hope.
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My story started back in October of 06 when I thought that I had sprained my wrist.
I kept working (Internal fixout in the housing industry) until the job was complete (two days),
but the wrist by now was quite swollen and the fingers very stiff and sore.
The following day my left hand started to suffer the same fate and the right, well I could not open a
vegimite jar nor hold a knife. Things only got worse from here with the same fate hitting my feet, knees,
and right shoulder, but I'm a bloke and things will right them selves, no need for a Doc.

At this stage I can hardly get out of bed let alone stand to have a pee, better to sit like the girls do,
Ahh, much more comfortable. After a week of this my groins started to act up and quickly spreading to
my lower adomin with  a lot of pain and extreme discomfort, but still I'm a bloke, we'll get over this.

Three weeks down the track I had no more fight left in me, in tears and barely able to crawl, I succumbed
to the fact something was wrong (DOH). The only thing I could do without causing any pain was blink.
It's amazing how many muscle movements are thru the abdomen. Just moving a finger was felt down there.

The Doc took one look at me and said, well, whats the problem?.
Geezus, havent you been taking any notice of me over the past 3 and half  weeks, then I remembered,
I'm a bloke.

The Doc prescribed prednsolone 3 x 25mg for three days tapering down after that, and off for blood tests.
Magic stuff that prednsolone, back to work at three days feeling as if nothing had happened.
I lasted 5 hours before having to pack it in, dizzy spells, cold sweats, shakes all over, and a brain that felt
like I had left half of it in bed that morning.

Back at the docs and he informs me that I have an RA Factor of 750 and ships me off to a specialist,
also stay on 3 x 5mg of prednsolone until you get into to see him.
Now I'm starting to hit the panic button, what the hell is this Rheumatoid Arthritis stuff.
A bit of reading on the internet that night and more panic, my bloody life is finished I thought.

Twelve months down the track and I'm still here and wont bore you with the journey in between.
Current status, unemployed, depression,  Vertigo, Tachycardia, and last, Rheumatoid Arthritis.
Meds- Methotrexate 20 mg once a week, Leflunomide 20 mg daily, Folic acid twice weekly.

Medications are just holding, but over the past week have developed a deep throbbing type pain in
my right upper arm and shoulder blade, feels more muscular than RA.

Hope you are all feeling good today...
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Fast forward to now.
The meds today are:  Humira, MTX25mg, Foliac acid 5mg daily, Pred 3mg daily.


WTB~  Honestly!!!   How many times do I have to tell you to quit stealing my story Thank you all for taking the time to respond! Babs, I look forward to hearing your story! Spelunker, thank you for your empathy and encouragement. I also appreciate your earlier suggestion to look into combination therapy. I also appreciate that you mention taking responsibility for your own healing - it's something I am taking heed of. WanttobeRAfree - your post really encouraged me as well. Thank you for sharing your story! Bodak - thank you for taking the time to write - I hope you begin feeling better soon! I looked at your website - you're are very talented and creative! Linncn - thank you for sharing your story - you have greatly encouraged me! Thank you also for the advice regarding coverage for biologics! Love, Juliamoveupbuckeye, thanks for the bump. Snow Owl - thanks for the perspective and hope you have provided me with. JHi Juliah, [QUOTE=JuliahRA] Spelunker, thank you for your empathy and encouragement. I also appreciate your earlier suggestion to look into combination therapy. I also appreciate that you mention taking responsibility for your own healing - it's something I am taking heed of. [/QUOTE]
Julia, I am so pleased that I am able to offer both empathy and encouragement. Where would any of us be without folks who care about us and express their concerns. I am very well satisfied if I can offer any assistance to anyone who is "stuck" in a "bad place".

I send you my very best wishes for a speedy resolution and look forward to playing it forward time and time again. Cheers, Shug

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