Posts Tagged ‘Invisible illness’

Wanted: Pain Whisperer

Friday, October 4th, 2013

Whisper-in-ear

I had an interesting appointment with my rheumatologist recently.

I have a standing lab order at LabCorp; my doctor renews it every six months. (I get blood drawn every six weeks.) Several months ago, at the beginning of a new six-month period, I noticed that the lab technician only drew three vials. (Usually it’s six or so.) So I asked, and it turns out that my doctor dropped several tests on my most recent lab order. Right now the only tests being done are the CBC and two liver tests (ALT and AST). The ones that have been dropped include things like sed rate and CRP. So, as I understand it, I’m mainly being checked for damage from medications – not for any of the markers that indicate inflammation or give an idea of disease activity.

So at my last appointment, I asked my doctor about this. He said that he doesn’t find the blood numbers particularly meaningful, and that he believes that patient reports are a far more important indicator of disease activity. (He does have me fill out a detailed questionnaire every time I come in, and he always does a joint exam.) “You are your own best sed rate,” he told me.

“But I’m not always sure that I really know how the disease is doing,” I said.

He smiled at me. “Oh, I think you do.”

I have my doubts about this. On the one hand, I think it’s great that he really listens to his patients. I know that it’s a very bad thing when the opposite occurs. (Kelly at Rheumatoid Arthritis Warrior has written about this a lot.) But I also hear other RA patients talking about things like the Vectra DA test. I also know that disease activity can continue when symptoms are quiet – I’ve even heard stories of people who thought that they were in remission while serious damage was happening underneath their level of awareness.

There’s another problem with this, too. I have always had trouble interpreting my own pain. I’ve never been athletic, and when people talk about the difference between “pain” from injury and the good “soreness” from exercise, I have no idea what they mean. Even long before the RA diagnosis, I always had trouble with this distinction. Once the RA came along, it got even more complicated for me – is this a flare? Muscle pain or joint pain? Is it the exercise or the RA? Is it caused by stress or depression? Sometimes, especially if I haven’t gotten enough sleep, everything seems to hurt, even though a joint exam and bloodwork show no problem. Other times, I have such a high pain threshold that I don’t even notice it. I once walked around for two weeks on a sprained ankle with no idea, simply because I had gotten so numbed to RA pain that the injury didn’t even register.

Do any of you have this kind of “pain-deafness,” or am I unusually out of touch with my body? I wish I had a Pain Whisperer – someone who could tell me, “This is from the RA.” “This is normal muscle soreness from exercise.” “This is because you hurt yourself.” Someone who would always be right, who wouldn’t miss anything. (I’m thinking back to the many alternative-medicine practitioners who got it wrong during the months before my RA diagnosis.)

In the meantime, I don’t know what to make of this change to my lab work. I’m suspicious because of the timing. I’ve noticed a lot of changes (almost all negative) in the way my insurance handles things since the new year. Right now my Remicade infusion has been delayed because of one of these insurance changes (a subject for another post). So I have to wonder – is this an economic decision? An insurance decision? Or is this how my doctor really feels?

Now I wish I had a Medical Practice Whisperer.

Edit: I just read this post over at Pollyanna Penguin’s blog – seems I’m not the only one with this issue! And I was also reminded of this 2009 post at Carla’s Corner – funnily enough, I see that I commented on it at the time! Guess this is a long-standing issue for me!

Becoming Visible

Thursday, April 8th, 2010

invisibility-cloak

For the most part, my illnesses are invisible.  I’m not in a wheelchair, I don’t need to walk with a cane except on rare occasions, and I don’t have visible deformities.  I’m the type of person who gets dirty looks when I use my disabled parking tag.  There have been huge (massive, really) changes in the way I look since my onset, but only people who knew me before would know that.  People seeing me for the first time would probably just see a fat woman, unless they’re really familiar with the distinctive look of steroid puffiness.  (I find that I can now spot it on other people.)  And although it rankles that most people who knew me before probably just think I’ve really let myself go in the past few years, I appreciate the fact that I can choose whether to disclose my illness or not – it’s not obvious.

But now…

I’ve written before about the fact that I’ve now been diagnosed with adrenal insufficiency.  This is probably a direct result of the RA, in one way or another - whether it’s because of prednisone overuse or because my adrenals have been attacked by the RA isn’t clear at this point.  (Probably the prednisone.)  But the bottom line is that because I have shown no improvement in the two months since it was discovered, I am now on hydrocortisone, and will be for quite some time.  And since adrenal insufficiency is a dangerous thing to have, it means that last night I had to buy one of these:

medic alert  

Yes, I know that lots of people wear these – most diabetics have one, and people with things like peanut allergies wear them too.  But can I be honest here, and tell you how much this step bothers me?  It announces to the world, “Something is wrong with me.”  It takes something private and makes it public.  It takes away a small piece of my choice – I know that I still don’t have to discuss my illness with anyone, but I can no longer pretend I don’t have one.

And yes, most people are pretty unobservant, but I teach piano.  I sit right next to students and they look at my hands.  There is no way they won’t see this.  And I just don’t want to talk about it.  I’ve worked hard to keep my health situation private at work, and I plan to keep on doing so.

I just feel as if another little piece of my “normal” has fallen away.

Yesterday I had a long, long, conversation with my husband (okay, more like a vent TO my husband) about feeling as if there’s a sharp dividing line in my life between the old me (pre-RA) and the new me.  My husband and I have been married for three years and four months, and we dated for two years before that.  Next week marks the three-year “anniversary” of my diagnosis, and for some reason, this made me realize that we are past the tipping point – he has known me for longer with RA than without it.  I wonder if he even remembers me the way I was.  (He tells me that he does, and that he still sees so much of the “old me” in me today – isn’t he sweet?)  But it really, really bothered me to realize that the dividing line is getting farther and farther behind me, and I feel as if all of my achievements, all of the good things about me, are behind it.  I don’t know why, but this bracelet just feels like a symbol of that, a visible daily reminder that I am not who I once was. 

In one of those weird acts of synchronicity that frequently happen in blog-land, I saw this post from RA Warrior yesterday, AFTER this conversation.  And it was comforting.  It reminded me that whatever I am feeling, whatever I go through in this crazy funhouse called autoimmune disease, someone else has been there too, and understands.  And that may not make it all better, but it sure helps.

P.S. – I recently saw a friend that I haven’t seen since the summer, and finally told her about my RA.  She said, “Yeah, you really looked sick last time I saw you - I wondered what was wrong.”  So much for my cloak of invisibility!

National Invisible Chronic Illness Awareness Week

Monday, September 14th, 2009

In honor of National Invisible Chronic Illness Awareness Week (Sept. 14-20, 2009), I have filled out a meme that is making its way around blogs, email, Facebook, etc. (You can read about the meme and find links to other people’s responses here.) Thanks for reading it!

30 Things About My Invisible Illness You May Not Know

1. The illness I live with is: Rheumatoid arthritis and Sjogren’s syndrome.

2. I was diagnosed with it in the year: 2007.

3. But I had symptoms since: the summer of 2006 – or at least that’s when the RA-specific symptoms appeared. I had all sorts of other issues for years before that, but still don’t really know if they were related.

4. The biggest adjustment I’ve had to make is: giving up my full-time career as a classical pianist.

5. Most people assume: that I am fine, since I don’t tell many people about my illness. Since they don’t know that I take prednisone, some people probably think I’ve really let myself go since I had my baby. (I gained 40 pounds when I started taking it.)

6. The hardest part about mornings are: getting out of bed, and then getting myself moving.

7. My favorite medical TV show is: Scrubs! (I know, not exactly a serious one… I don’t really watch the other kind.)

8. A gadget I couldn’t live without is: my husband! (Kidding – sort of. He does most things for me that I can’t.) My disabled parking permit is another one – not exactly a gadget, but I couldn’t do without it.

9. The hardest part about nights are: when insomnia hits during a flare.

10. Each day I take __ pills & vitamins: 20 on an average day, plus an inhaler drug twice a day; extra pills a few days a week, and an infusion drug every 8 weeks.

11. Regarding alternative treatments I: prefer at this time to use them as complementary medicine – I went without traditional meds for too long, got much worse, and suffered damage. I do think they are very useful partners for traditional meds, though, and believe that they do work well for some people on their own. I try to respect the choices of others and appreciate it when they do the same for me.

12. If I had to choose between an invisible illness or visible I would choose: The answer to this question depends on how I am feeling. Most of the time I am grateful that I can choose to hide it, but sometimes I wish it were more obvious so people would help me more. I also wish my illness were visible when I need to use my disabled parking permit – it makes me feel incredibly self-conscious and even guilty to look perfectly fine and park in those spots.

13. Regarding working and career: I will continue to do the work I love for as long as I am able, but have had to slow down considerably, and am constantly seeking new ways to do it.

14. People would be surprised to know: exactly how serious RA can be, and how many seemingly-unrelated problems pop up around it. I expected joint pain, but was unprepared for things like crushing fatigue, low-grade fevers every afternoon, skin problems, lung problems, bladder problems, non-healing wounds, infections… the list continues to grow.

15. The hardest thing to accept about my new reality has been: the fact that I can’t just pursue my musical dreams full-bore like I used to – there are limits now, and I have probably already reached the highest point in my career.

16. Something I never thought I could do with my illness that I did was: continue to perform as much as I have.

17. The commercials about my illness: piss me off a bit; they really underplay what the disease is about, and make people ask me, “Why don’t you just take such-and-such a drug, and you’ll be all better?” (Especially annoying when it’s a drug I already take, or one that isn’t meant for my condition.)

18. Something I really miss doing since I was diagnosed is: playing the piano for hours and hours a day. (Are you sensing a theme here?)

19. It was really hard to have to give up: Irish dancing – too hard on the knees and feet now. I also really miss my dancer friends, who I don’t see often anymore.

20. A new hobby I have taken up since my diagnosis is: songwriting – that’s what prompted this blog. Oh, and I guess blogging! :-) I also keep trying to take up crochet, but it hasn’t quite stuck yet.

21. If I could have one day of feeling normal again I would: Well, I sometimes DO get days of feeling normal, and they are wonderful – the problem is that I can’t predict when they will come, and so I am sometimes paralyzed with indecision about what to do and therefore waste them. Maybe I should give more thought to this question, and have a plan ready!

22. My illness has taught me: deep compassion for other people going through difficulties.

23. Want to know a secret? One thing people say that gets under my skin is: how much of a saint my husband is. I completely agree that he is, and often say it myself – but it leaves me feeling like a giant burden, or something damaged. I like to think that he gets something out of being with me, too!

24. But I love it when people: ask me how I am doing and seem to be really interested. I also love it when they relate to me like basically the same person I was before.

25. My favorite motto, scripture, quote that gets me through tough times is: I am still working on this one.

26. When someone is diagnosed I’d like to tell them: that it will be okay, and that I’m here anytime they need to talk about it.

27. Something that has surprised me about living with an illness is: how it’s sometimes possible to turn the bad things into good things – for example, I always feel terrible on the day I take methotrexate, and I have turned it into a day to relax, watch light-hearted movies, read silly books, and slow down. Another example – the songwriting I have begun to do.

28. The nicest thing someone did for me when I wasn’t feeling well was: when my mother flew out and spent a month taking care of me and my family when I was going through an especially rough patch. Also, the million small kindnesses my husband performs every day. One example – he dresses our baby in an “I Love Mommy” onesie when I have to have my infusions, or when I’m sick from methotrexate.

29. I’m involved with Invisible Illness Week because: I want other people to know that they are not alone.

30. The fact that you read this list makes me feel: that you care enough to want to know what I am experiencing – thank you!