Not Sick Enough – Thoughts on an Auto-Immune Disorder

This post has been percolating in my brain since my last doctor’s appointment on 2/15.  Then I read My Take on RA Treatment and Decisions and my brain started moving more.  Today I read Kelly @ RA Warrior’s Post “Can We Treat The Whole Person or At Least The Whole Disease” and I decided it was time to finally finish getting my thoughts down.  This is mostly a vent; Where I don’t expect anyone else to fix it but I need to get it out.

When I was in my 20’s I had “an episode.”  There was a lot of pain involved and no one knew what was wrong.  There were tests run and no definitive diagnosis was made.  There were some bandied about but, basically, the doctor wanted me to be quiet and leave him alone.  He didn’t know what was wrong and there was nothing he could do for me was the general consensus. He implied it was all in my head.

So I quit my job and did something less stressful and felt ok enough to keep going.  When I got pregnant all those pains went away.  (I hesitate to say “When I got pregnant I felt great” as I had hyperemesis gravidarum with my pregnancies.  Fancy words for ‘throw up all the time.’  So I didn’t actually feel great.)  And the pain stayed away for close to 10 years.  I ran a marathon, slowly.

JENNIFER PITONIAK (F29) 6:33:48 1400 473 / 92 F25-30 6:31:36 WARR ACRES, OK

I worked at raising my kids and lived in 3 states.  And I felt good.

But a few years ago things started to hurt again.  And I realized that, honestly, my hands had pretty much always hurt but I had ignored it.  I started with my gp who very quickly told me that he had no idea, that it was out of his expertise, and sent me to a specialist.  It’s the same rheumatologist I continue to see and she is very very good.  But there are limitations.  In fact, I have had multiple diagnoses since beginning this journey but nothing definitive.  If you’ve read my About Me page you’ve seen my disclaimer that my diagnosis varies from appointment to appointment.  It’s probably RA, and when I started this blog that’s what they thought it was, but there is nothing official that says that anymore.  (I’ve got it written on some old documents but things keep changing.)  She sees me about every 3 months but sometimes more frequently.

I have to go over the Bay Bridge to get there

To get to her I have to drive between 2.5 and 3 hours in each direction which means I have to take a whole day off of work.  And often I hear the same thing

“Well, *pause*, your blood-work still looks great.”

Normally having great blood-work is, well, great.  But in this case it means my data doesn’t show what we want.  I don’t look sick enough.  I am sero-negative and, due to my treatment, do not appear very swollen.  But I still hurt.

I’ve switched jobs.  I’ve changed my diet.  I’ve reduced the stress in my life.  I’ve added in extra time to relax.  I’ve made sure I am getting 8+ hours of good sleep a night.

And still I hurt.  I “shuffle” around the house at night because my ankles hurt too much to bend.   I stopped wearing my wedding rings some time ago because my hands were too swollen.  While the swelling has gone down with the daily prednisone they still hurt too much to wear.

But without the definitive proof there isn’t a whole lot more we can do in the treatment department.

Now, my doctor does not think it is all in my head.  She is very supportive but she is also a realist.  And a realist knows that the insurance company will not pay for certain treatments without definitive proof which we don’t have.

I’m not sick enough.

I could go off my current treatment and see if I swell up substantially and/or develop some more obvious things we can target as visible clues.  But I’m functional right now.  I get up and go to work every morning as a special ed teacher and I am part of my family. I might not participate as much as I would like, but I am functional.  I’m worried about what would happen if I went off that treatment.

So I feel like I’m stuck.

At least she doesn’t think it’s all in my head.  But again, I’m not sick enough.

I look pretty good.  I’m not running any marathons but hey, not everyone does that anyway.  I look “normal” but I hurt pretty much all the time.  But yet we don’t quite know where to go from here.

There are side effects from medications and, like is said in the article on treatment, there has to be informed consent to choose these treatments.  I’m not saying I am desperate to go to the next level of meds.  I’m actually scared of it.  But I really don’t know where I go from here.

I guess I just keep doing what I’m doing.  But I wish there were more answers for people like me.  Yep.  Those who are not sick enough.

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10 responses to this post.

  1. I so understand. I wish I had something helpful to say.

    Reply

    • Just the fact that you read it and understand is very much appreciated. It’s tough when you “look so normal” and don’t feel great.

      Reply

    • Posted by Toxicity-2-Purity on March 19, 2012 at 1:39 AM

      That sounds so familiar. I have given up on the traditional doctors; although, I respect what they can offer. I now see a Chinese Herb Specialist and Kinesiologist (same guy). I can’t say that it is 100% better, but at least he doesn’t look at me like I need to see a shrink.
      I have heard Gluten Free has been good for RA. I am on a gluten free journey because of food allergies and can see a tremendous difference in how I feel. I do however struggle with back inflammation from time to time and wonder if there is something else I need to eliminate from my diet
      Hope they find some answers for you soon. Love your FB post as well 🙂

      Reply

      • Thanks so much!! I’m still seeing my regular doctors but starting to branch out to more things because it’s just not working for me as I would like. I did a few days of very high raw this past week which seemed to help tremendously. It’s so easy to go back to “normal” vegan SAD eating, though, and I found that very quickly I don’t feel as good. It’s a constant thing…

  2. have you ever watched the movie “fat, sick & nearly dead”? it’s about juice fasting and rebooting your system … I have hashimoto’s so I’m very aware that inflammation is the enemy – I juice everyday and would love to try a fast to see if there would be any benefit … I just started following your blog, so I apologize if you’ve already mentioned this. having an auo-immune disease really stinks because each day is different which is very stressful in itself.

    Reply

    • Kristen: No apologies!! I haven’t watched the movie yet but it’s on my must watch list. I watch almost no tv or movies. I have thought about a juice fast and about doing eat to live for 6 weeks. I’m a little worried that such a drastic change would make doing my job difficult for me. I’m thinking about trying something in the summer…

      Reply

  3. Posted by Michelle on February 25, 2012 at 9:44 AM

    I’m sorry, Jennifer. I had no idea that you are in pain every day. Your FB posts are always so peppy. That makes me so sad. I believe in the power of prayer, and I will add you to my daily prayer list. Know that you are in my thoughts.
    Much love,
    Curly Haired Chica (Michelle Vina-Baltsas)

    Reply

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