Friday, October 8, 2010

The RA Meme - My Answers

This meme is the first for RA and comes from my favorite RA Health Activist Kelly Young, the RAWarrior. You can find her page for the meme here.

So, grab a cup of coffee and sit down to contemplate your own answers while you read mine to the questions she poses. Maybe one of my answers will surprise you:

  1. How many other diagnoses (co-morbidities) do you have?
    I cannot count them all. Ignorance is bliss.
  2. When were you diagnosed?
    I still don't have a firm diagnosis. I'm told it doesn't matter, the treatment is the same as my other autoimmune diseases and I need to just learn to live with it.
  3. How many Rheumatoid Arthritis treatments have you tried?
    It's been so long, I'm not sure how many. More than 5. If you count alternative stuff, more than 10.
  4. What kind of a reward do you give yourself after taking any medicine that you hate?
    Hmm, reward - that's a good idea! Usually I have a water chaser - something else I really am not fond of consuming.
  5. Who helps you open doors or jars when you need it?
    Whoever is around. I'm stubborn. I always try first. Big mistake *ouch* I feel anyone around me with good hands is fair game.
  6. What would your ultimate good rheum doc do?
    Doc would insist pain be adequately treated and work with me diligently to that end.
  7. What’s your favorite comfort for RA?
    Heating pad. A good pounding hot shower helps too, since I don't have a hottub. Daughter is in therapeutic massage school, so next year my answer will be - a massage!
  8. What was the hardest thing you have done since being diagnosed with Rheumatoid Arthritis?
    Look for a doctor to help me get through it or, maybe trying to get adequate pain control to make my life livable. Both are arduous things to endure and I wouldn't wish it on anyone.
  9. What’s your biggest RA-related fear?
    That the pain will become permanent and unbearable and there will be nothing left for me to try.
  10. How many pills do you swallow every day?
    Only about 5 pills, give or take. Then there are the liquids, the shots and, well *other* ways of getting the other meds in me.
  11. Something surprising that you wish insurance would cover for Rheumatoid Arthritis patients?
    A bed so I can sleep through the night, which would help everything else too. Water therapy, specifically a hot tub. Massage therapy at least weekly.
  12. What do you wish people knew about Rheumatoid Arthritis?
    That it is an autoimmune disease and that the pain does not go away, even with meds - provided we could get the pain meds we need in the first place. That it is such a terrible struggle for pain relief. That we have to make a conscious decision every day how to live our lives and manage to do it with the grace they see, despite the fight they cannot understand.
  13. What would you like to say to your RA? I was taught it's impolite to swear in public o.0

Thank you Kelly for some great questions! I can't wait to see how others begin to answer them too...
Comment by Kelly Young on October 9, 2010 at 12:25am
I loved reading yours Ellen. It made me sad to read number 2 "I'm told it doesn't matter." Told by whom? Docs? True I'd say, "well they are treated similarly so at least there may be some help from treatment." But to say it doesn't matter? That's just dumb of whoever is doing that to you & a cop-out because they dont know. So there. ♥
Comment by Ellen S on October 11, 2010 at 1:41pm
Thanks so much for stopping by Kelly :)

Yes, my docs. I think it's because I have so many health things going on at once, and I am already having such difficulty treating them. A couple have told me they don't want to look at anything else because they don't want to add another diagnosis to my already long list, and that the treatments I'm on wouldn't change anyway.

I'm still pretty new to the whole RA thing. Every time I go to my rheumy it seems I get a different type of answer. One time he calls it RA, another he calls it crossover. Then he says I have Ehlers-Danlos and that's making the RA worse. (I still haven't figured how to follow up on the EDS thing to investigate what he's talking about) Then it's symptoms of the Lupus/Sjogren's. I would really like to find another rheumy as I think I'm probably a bit of a handful for my current one, but that's a difficult proposition at best here. As you know, it's a long process and to be honest, I'm so tired of my life being ruled by all these different diseases I think part of me really doesn't want to add to that long list either. Do you think I'm copping out too, or that I shouldn't accept that pat answer and look harder? Some days it just feels like *too much*.

I have a lot of antibodies to a lot of things, but most of them manage to stay below the "positive" mark. As of the last few tests I do not have enough antibodies for a positive RA test result. I know this doesn't necessarily mean its not RA, but I suppose I'm still confused myself.
Comment by Kelly Young on October 14, 2010 at 8:45pm
If we were on my sofa, I'd hug you and say "One day at a time." You don't have to do this today. It doesn't sound like you are in denial or refusing to face it. It's just not clear right now. As long as you are being treated, let it unfold for a few more weeks or months & it may be more clear. Many people live with unclear dx between autoimmune diseases for a long time. Science has a long way to go on this. The labs are inadequate.
For me, when there is a kind of a brick wall, I like to stand back & wait. And then maybe get 2nd opinion. That's just helped me. I knew I was only "giving up" temporarily - just that it doesn't have to be solved TODAY.
Comment by Kelly Young on October 15, 2010 at 5:22pm
Ellen, I saw last night on Jamie's blog that you said your treatment is only nsaids currently. I hadn't realized that when you wrote "the treatment is the same." I assumed that meant a medical / disease treatement. Please take whatever time or course you need. But there are milder dmards & I wonder if a different doctor would not have you on some type of immune suppression. Of course we cannot diagnose ourselves or each other. I just know from experience that my treatment would be very different with different doctors. They hear us differently & assess us differently & have differing philosophies... Take care.
Comment by Ellen S on October 15, 2010 at 6:33pm
Kelly, Virtual ((Hugs)) to you too :) It means a lot. This diagnosis/undiagnosis thing is so frustrating!

I know I need a new rheumy, or at least a second opinion. Thank you so much for reinforcing that feeling. Knowing and doing are sometimes two different things in my world.

You know, I should have added one other thing on Jamie's post and I'm sorry I didn't - I am taking LDN, something that is a shot in the dark try by my PCP to see if it might work for me. Most docs don't consider this a 'valid' treatment, but it did help my Sjogren's significantly. It may be having an influence on my thyroid issues too, as I have had to again lower my dosage of T4. The rest is mostly status quo, although I'm not yet at the dosage I'm really supposed to be on. My rheumy tried plaquenil, which I flunked miserably (got sick and had eye trouble) and gave me a prescription for meloxicam to try to get me off the Indocin that can be so damaging. (My current rheumy thinks it's overkill, even tho I tell him it's the only thing keeping me going, and barely at that.) That's it in the couple years (I've lost track how many - eek!) since I've been seeing him. I might as well have eaten a tic-tac for all the good it did me. I'm trying so hard to avoid prednisone again because my bones are already so bad, and kidney stones are such an issue. Nothing else has been mentioned with this new doc. So, I guess compounded indomethacin it is, and I pray for no more uber-bad side effects... until I can locate a good rheumy that is, and get this situation figured out a bit better.

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