The truth, the whole truth and nothing but the truth

Here's my "secret": I'm in pain almost all of the time. I try to deny it even to myself on all but my worst days. I don't like to talk about it that much because talking about it makes it real. And I don't want to sound like a whiney wimp, either. I dream of being the strong, limber person that I was 10 years ago. But some days I cannot deny the pain and fatigue because it is overwhelming. Today is one of those days.

It started immediately upon waking. I had the lower abdominal pain that I've been facing for 5 months now from the minute I woke up. This newish pain was supposedly from the ovarian cyst that they found on CT scan in February. But the cyst was gone at the beginning of April on ultrasound. And the pain is still there. And I am also having the back pain again that I was supposedly experiencing from my kidney stones in February and March. Well, those were crushed by lithotripsy and passed and the last X-ray in March showed no kidney stones remaining. So, I either have new ones (please no) or the pain wasn't really from the stones at all. Is it all from fibromyalgia?

See, this is what they tell me I have: fibromyalgia. It means that I have widespread pain and fatigue that comes and goes with very little warning. I also have stomach trouble that keeps me from eating dairy (oh ice cream, how I long for you!) and "brain fog" which makes me forget words while I'm speaking among other things like putting the wet clothes that I 've just put in the dryer back into the washer. I've been given this diagnosis by 3 different doctors over the past 7 years or so. And each time I wish they would tell me that I have something else. Something more treatable. Something that you can take a pill for. Something that people have heard of and believe in. Well, there are a handful of pills now approved by the oh-so-estimable FDA for treatment of fibromyalgia. And more people have heard of it now than had heard of it when I was first diagnosed 7 years ago. But I still hate it. And I'm embarrassed to say that I'd rather have something else. (I know, I know, be careful what you wish for...)

But here's the thing: I don't LOOK SICK. And, of course, I don't want to look sick. But, feeling like shit and looking normal can be so very frustrating sometimes. People expect me to be able to continue saving the world like I do, and then when I a) forget the special cookies for daycare or b) have to take a nap instead of playing with my kids or c) just plain old do not feel up to dealing with the public at work or, honestly, even my own family, well, then I just feel guilty. I do not allow myself to say to anyone "I am having a major fibromyalgia flare and I will not be able to lead small group this week at church." I do not take sick days from work. I do not really slow down that much until I get home and then I will often crash. Dishes and dirty clothes pile up around me. The dog lays down next to me gratefully because too much motion makes her nervous and here is finally someone who will sit still with her for a bit.

Tonight I am at work typing through the pain of majorly aching fingers and hands. I think of the pain meter they ask you about at the dr. "How much pain are you in on a scale of 1 to 10 with 10 being the most pain?" Uh, well, I've had two babies pass through my body, so that was 10... so I guess this is a 7?? Every pain I have now is colored by that ultimate pain of childbirth. I'm not sure if this helps my cause or not. Maybe the finger pain is really a 9. I can say that in the realm of finger pain that I have endured in the past, today is worse than I've ever had. But my fingers aren't swollen. You can't tell that my fingers hurt if you just look at them. Thumbs to pinkies ache like an old arthritic woman. Wrists and hands and arms, too.

And then there are my hips. Ah, the old hips. When I was prego with Nate, my hips hurt so much that Maia started saying that her hips were hurting. Maybe they were, who knows. But I have to say that at age 33, it really sucks to not be able to walk a fast mile like I used to for exercise. I can walk 15 minutes now at a medium pace, maybe 25 minutes on a good day, before my hips will start hurting. On a bad day, however, they hurt all of the time regardless of whether or not I am sitting, standing, or walking. That being today, I find myself shifting around frequently at work to try to "shake out" the pain a bit. I have started noticing that I walk like my mother. She was born breach with genetic hip dysplasia and got two, new bionic hips 2 years ago. But I wasn't born breach. Mine is just fibromyalgia. Just...

I know that I need to see the chiropractor when I start to feel this way, and I may have to try for a lunch-hour appointment on Friday. Typically that will help my whole body feel better for a while. But what I am most concerned about right now is the abdominal pain that only subsides for a few days and then comes back with a vengeance. It has turned into a burning, spreading pain now and I know that if I go to the dr they will want to do more tests. I already owe the hospital over $1000 right now, and I don't want to waste time and money to undergo more tests that will come back saying that I look normal. I know that I look normal. I always look normal, even on the inside. (Well, almost always.) I have seen the MRI scans of my own brain. Normal!! Well, I'll be! Tell me it's normal while I'm having a seizure, then, if it's so normal. And when they DID find things wrong with me, the ovarian cyst and kidney stones, those were also maybe not the source of my actual pain. Suffice it so say, I don't believe much of what they tell me anymore after I have tests done.

Unfortunately, the people who bear the brunt of my whining and complaining are those closest to me, and to them I want to apologize for any complaining and carrying on I do about my pain and discomfort and exhaustion. To the rest of the world, I try to put on a happy face. When I have a migraine I usually take some meds and stick it out at work. Back and neck pain waits weeks sometimes until I can see the chiropractor without having to alter my work schedule. On days like today, however, it is almost impossible. I am trying to ride out the evening at work without totally snapping on the creepy guy who thinks he needs kids books (who has been told before not to come upstairs unless his kids are with him because he is clearly stalking me....) And then I will go home and collapse. And my kids will need me and Shad will still be painting the bedroom and nobody will be ready for bed yet at 8:30. I will just want to close my eyes, lay on the bed and let the fan blow cool air on my skin. My normal, albeit pale, skin that doesn't look sick in any way, that doesn't bely the pain that festers beneath it.