Is Rheumatoid Arthritis OUR fault??!! (A venting story)

Normal Hands vs. Arthritic Hands

Normal Hands vs. Arthritic Hands

Written by: Lisa (anonymous last name) Edited by: Sarah Keturah

I have a wonderful group of well-meaning friends. They all know about my condition, which my mother and my mom’s mom also have (my grandma had all her knuckles replaced several years ago and has severely deformed hands).

Nevertheless, I keep getting these emails and such about WONDER DIETS that will PURGE MY SYSTEM of the RA. How if I eliminate fungus (mushrooms, antibiotics) I will heal. How if I give up this or that or balance my chi or add yin to my yang or take up underwater basket weaving that I will have a miraculous recovery. PUH-LEEZE!

Did I drink too much Diet Coke? Was it my years of smoking cigarettes in college? I didn’t start eating red meat until I was in my 20s. Maybe I never should have started?

I don’t know. I’m just so FRUSTRATED. I don’t want to waste time on wondering WHY or HOW the RA happened, because now I have it and I have to live with it.

I am all for trying anything to help. Hell, I’m even trekking to Montana to see a Native American shaman this summer to see if he can pull the negative stuff out of me :-)

But I feel like people are looking at me with question marks in their eyes, peering into my soul, wondering *if* anything is wrong with me.

Maybe this irritates me so much because I wonder the same things, too. Sometimes I wonder if anything is wrong with me.

I see my swollen hands and have dreams about pain when I’m asleep. When I have flares I cry. I feel defeated by RA. But I can’t help but wonder … what is it?!

I am sero-negative so far (dx’d six months ago). My sed rates were up, but then went down at my last test. I want PROOF. I just want to know WHAT IS WRONG WITH ME.

And I want the people I love to quit questioning it. I don’t have the energy to try every stinkin’ diet, fast, medication or method. I am TIRED (the doctors call it “fatigued”) and I am SORE and I just want to make it through the day and change my baby’s diapers and get dinner on the table and clean clothes in the drawers.

Can’t I do that in peace, without having to wonder if I CAUSED MY RA?

Grrrrrrrrrrrrrrr.

Love you all, my kindred spirits.

Soft hugs all,
Lisa

3 Responses

  1. Kathleen,

    I’ll be sure to pass your note to Lisa. I completely understand what you mean by not being able to pull up a feather comforter. I use to be like that, and I couldn’t even handle it on my toes. Since you are a physician, what are your thoughts on Neprinol’s case studies? Those were what convinced me to give it a shot. I figured I would know by my body’s signals whether or not Neprinol was good for me. I know that methotrexate made me feel horrible pains in my kidneys perhaps, the day after I’d take it. For some people, these drugs work great. I gave them a very good shot for a long while. My new regimen fits with me and makes me feel pretty much like my old self, except for some minor swelling still in my wrists and fingers. I don’t have pain anymore and I hope I can get rid of that final swelling. I know the prednisone, methotrexate and sulfasalazine never could so I may have to live with the minor inconvenience but I really think eventually I’ll be in complete remission. I wish you luck and please do keep us posted. Feel free to Join Lisa and I and many other wonderful people who have RA on http://www.dailystrength.com where it’s really nice to find other people who are going through the same thing as you.
    Gentle hugs,
    Sarah

  2. I understand completely Lisa. I am a 57 yo physician and I am sero-negative with a modest response to Enbrel/MTX and generally freaked out about having to take immune suppressant drugs and wondering if they really have the right diagnosis. My diagnosis was made by MRI of my wrists/hands which revealed extensive synovitis (inflammation of the extensor tendons which are made of the same synovial cells in joint linings). I actually didn’t appreciate my “fatigue” until I started Enbrel which was like fairy dust at first. Now it’s less magical after three months on it but I’m definitely worse off it. I want to try every supplement out there but realize that I don’t know how anything will interact with the nasty drugs I’m on and could actually inhibit the immune inhibitors I’m on. It makes me crazy. I don’t really trust drug companies at all but I have to trust someone so I do trust my rheumatologist who isn’t totally closed minded about alternative stuff. It’s hard to explain to other people that your hands hurt so much that you can’t pull a feather comforter up at night. I look well but I definitely don’t have the energy I used to have. I can deal with the pain even though it is intrusive and annoying but at times it wears me out emotionally. RA is NOT an act of God and it is not our fault. It is clearly genetic but in the end, we are the only ones who can transform our whole approach to our illness. I try to accept that I can only deal with today, and how I feel today and adjust my activities around it. By not putting pressure on myself, I’m better able to deal with when I don’t feel up to something. But….my kids are 14-21 so I don’t have to chase after little ones. At first my husband, also an MD, was not at all supportive but I think he has started to see the impact it has on me. I found mindfulness training, a type of meditation, kind of buddhist has helped me cope with all my stress. Good luck. Kathleen

  3. arthritis not our fault.It is the fault of god.On your part do exercise and lead a healty life style.

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