Wednesday, March 3, 2010

Always Something There To Remind Me

After hosting Patients For A Moment #18 and asking other patient bloggers about their relationship with illness, I decided that I should explore my own. I was a bit forestalled in this because I was hit with several lupus flares in February, which quite honestly, took me very much by surprise. Because these flares brought with them symptoms that I haven’t experienced in months, maybe even years, and also came with symptoms that I have never had before.

Flares are the direct hits, the most extreme example of my body in turmoil. My latest flare began with my right rib hurting. I guess you could call that my “universal sign” for a flare. That’s one of the very first symptoms I had way back when I first got sick. Then comes the headache, which seems to prefer only one side of my head – actually, the flare seemed to favor one side of my body – only to be followed up in the morning by the “lupus hangover.” And as I was sitting battling a headache and nausea, I realized that I did not miss these kinds of things.

I had a day. The signs were there. I had a freaking day to stop my speeding freight train of a body from derailing off the track. But I didn’t.

You know how else I knew I was flaring? I brushed my teeth and the toothpaste gave me heartburn…

I never realized before how my breathing changes when I’m in a flare and in pain. Somehow I’ve adapted to a kind of deep breathing – slow deep breaths – that seem to be one of the only things that keeps me at all calm and prevents me from freaking out when my body is going crazy.

And for the first time in two and a half years, I cancelled an appointment I had. I tried to gear myself up, telling myself that if I just threw some clothes on and headed into the frigid Michigan winter, I would make it. But then my head started pounding and the nausea came on strong, and I really thought that if I went somewhere I would either puke or pass out, neither of which sounded appealing. So I didn’t do it. And I knew that I was doing myself a favor.

In these moments, when every single movement is painful, and I can’t believe it’s possible to feel as bad as I do, I catch myself wondering what I did to cause my body to punish me so relentlessly.

Almost in the same instant that such thoughts enter my consciousness, I tell myself that I need to push such thoughts to the furthest corner of my mind.

It’s easy to want to find a trigger for a flare. Maybe I stayed up too late, or didn’t eat well enough, or worked out too hard. The list of what I could have potentially done wrong is endless.

But such self-blame is counterproductive, especially given the fact that I am no longer on meds specifically to treat lupus. My rheumatologist and I agreed at my last appointment that the RA was the bigger problem. But now I’m not so sure. Even though it seemed like Cellcept wasn’t doing anything, is it possible that it was and I just didn’t realize it?

The truth is, I will never know what triggers these flares, and the fact is, it is most likely a very complex combination of things. And as bad as flares are, there are other things, too – small reminders…

No matter what I’m doing, I can be feeling great, and then boom, just for good measure, I get reminded that no matter how healthy I may feel, if even for a second, I’m not.

There are certain things I do, which no matter how I feel going in, cause me pain. For instance, I can feel fine, have very little pain, and as soon as I start doing my workout video, it feels like someone is trying to pull off my arms and legs. Yes, it feels like someone is trying to dismember me (or at least it feels like what I imagine it would feel like to be dismembered). Nice, huh?

Every time there looks like there will be a reprieve, some other system gets f***ed up or something goes wrong. The past two and a half years have been a nearly constant onslaught of ridiculousness.

Even my insurance company insists on reminding me that I’m sick (see picture at beginning of post). Talk about Big Brother. I think it’s their way of making sure I realize how much more I cost than “normal” people my age.

And I keep having to be reminded that I haven’t been at this for that long. Next month will mark just two years since I received the diagnosis of both lupus AND rheumatoid arthritis. But honestly, it feels like 10 years. It feels like so much time has passed, and really, not very much time has passed at all.

As much as there is physical pain, there is so much emotional work and upheaval that come with flares and other signs of a body that is battling itself. And it’s exhausting.

I’ve been dealing with some other health issues, which I will hopefully post about soon. But the truth is, I feel like I’ve hit my limit. We all have a breaking point and I feel like I’ve hit mine. I am so ready to be taken off all the meds, as lately, they seem to be doing more harm than good. Sometimes I feel like illness has made me a stronger person than I was when I was healthy. But right now that seems like a pretty big price to pay from always having to be on guard about my health.

I am once again left to wonder:

Does this ever get any easier?

Is there ever a day off?

Because it seems to me that no matter how I feel, there’s always something there to remind me…


  1. *hugs*

    I know exactly how you feel- if one more ^&*$#!@ thing goes wrong it will be the limit. I just want to be able to forget it all, if even for one day. But life won't let me. My case is slightly different- if I gave up my thyroid medication I wouldn't be able to function for long, so there isn't much temptation there (although if someone has a magic wand to make the hypothyroidism go away, sign me up!)

    Anyway, this definitely struck a chord- may your flare be brief and it's end a relief.

  2. I wonder the same things about my own illness. Will managing these condition ever get any easier? Will I ever have a day that I don't have to worry about an upcoming doctors visit, the results of recent lab work/test, the cost of treatment, needing medication refill etc? Right now I don't see that happening, but you never know it might. That is where hope comes in. Without it I would be lost.

  3. it is breaking my heart to read this, I understand how you feel, please continue n writing i love reading your thoughts and I think they are properly written, your words are beautiful...just like you.
    loads of love from sunny ol malaysia
    xoxo azura

  4. It gets easier...but there really isn't ever a day off.

    Hang in there!

  5. I hope you start to feel better soon!

    I know the feeling of if this continues to go on...what is my limit?? But just keep hope.


  6. Like the title girl! So, just what do those insurance booklets say? I know they've had case managers and such programs for other chronic diseases, but never saw or got anything specific from any of my insurers - when I had them. I'd like to know where they are trying to steer things.\Chelsea

  7. Oh 'hon! Do feel better soon! You *will* feel better - everything in life seems to be a cycle. And when you do, make sure to enjoy it and remember it. Sadly we are programmed to remember painful times better than good times. :(

  8. I sure know what you mean about "costing more than other people my age" - what an understatement!! But you are absolutely right - "self-blame is counterproductive." Might as well make the most of the good days :) hugs

  9. Does it ever get easier? I've been at this for about 14 years now (fibromyalgia, rheumatoid-type arthritis, etc. etc.) and yes, it gets easier because you get more used to dealing with it. Building routines helps, that way you don't have to think about it as much.

    Is there ever a day off? Nope, even on the "good" days when there are fewer symptoms, you still have to maintain treatment protocols and avoid "triggers."

    That being said, if you can reframe it so that a "day off" doesn't mean "I don't have a chronic illness to deal with," it helps.

    For me, "a day off" means a day when I ONLY have to deal with the "usual" levels of pain and maintain my routines.