Is that politically correct? Probably not. Did I care when I stared at my puffy cheeks this morning? Nope. Was I crying all night? Had I finally realized that my 2 small children were never going to stop wiping questionable fluids on my pants? Nah…I cried about that 2 nights ago.
It. Was. The. Stupid. Steroids. I’m getting the dreaded steroid moon face. Plus a nice 10lb weight gain.
What’s worse…the number of pills per day or the fact that I keep them in a Max & Ruby bag??
60 mg of them a day. For over a month. And they aren’t working. The Prednisone (steroids) are in addition to the Plaquenil (an autoimmune drug). And the Colycrys (a drug used to treat gout…which I do not have). And the huge doses of calcium, vitamin D and Prevacid to reverse all of the damage that long-term steroid use can cause. Oops…don’t forget Zyrtec and Allegra for the hives. What’s all of this for? “The kissing cousin to lupus.” A little (lot) of vasculitis. And some hives that would make you slap a puppy. (Sorry puppies…just kidding…) Within the last 6 weeks I’ve found myself thrust (unwillingly) into the bizarre world of a undiagnosable autoimmune disease. What started as a bad case of the hives and some tiny bruises on my legs quickly spiraled into a visit to the internist…which led to the allergist…which led to the dermatologist (and some nice biopsies) which landed me straight into the lap of a rheumatologist. Well, not LITERALLY into his lap…although that would explain my multiple appointments…hmmmm…
Yup. That’s exploding blood vessels.
Baby Got Back…hives…
Baby Got Front Hives Too.
See…I couldn’t slap a puppy with that hand even if I wanted to so just calm down!
And everyone just thought I was a dainty little walker! Blush! (And yeah, yeah, yeah…I need to puts the lotion on the skin…)
Scattered in there were more blood draws than I can count (one visit consisted of a nice but mildly sadistic Thai phlebotomist and her 13 glass vials waiting to be filled…you need a cookie after a visit like that…), a chest x-ray to rule out Wegener’s Disease, a steroid prescription, a stronger steroid prescription, a stronger steroid prescription and finally…a refill of that strongest steroid prescription. And let me tell you, those things suck. But more on that later.
So I says to my doctor, I says, “Doc. Give it to me straight. Are you telling me there are no answers?”
To which he replies, “Of course there are answers. You definitely have an connective tissue disease. But you don’t fit the symptoms enough to know which one it is.”
So that’s an answer. But it’s a sucky one.
My ANA panels show me as having Sjogren’s Syndrome. Sadly, this is not a Bjork like condition that causes you to fling dead swans around your neck. It’s more of a ‘all of your glands that produce tears and saliva are destroyed’ kind of thing. Venus Williams has it. Very glam. So I settled into that, did too much reading on WebMD, freaked myself out and then soothed myself with the knowledge that Venus and I would become very close friends and I would in fact receive valuable tennis lessons from her and finally nail that back swing.
Sorry Venus. Put away those tennis whites and dry those tears (ooooh…too soon?). Looks like you can come up positive on a blood test for an autoimmune but if you don’t have the symptoms (which I don’t) then they don’t call it that. And as blinky and dry eyed as I felt when I read about Sjogren’s, I have to say that I don’t have the symptoms. If anything I error on the side of spraying it when I’m saying it. So that leaves me with the ‘kissing cousin to lupus’ diagnosis. Great. I got the inbred disease.
Now don’t get me wrong. I’m not whining. Well…I’m whining a little. But please understand that I get how lucky I am. I have and have had friends with way worse things. I was diagnosed early on, before kidney or liver damage. Most people search for years before they get answers. I’m not dying (well, not in the RIGHT NOW sense…I mean, we’re all dying…yada yada yada). I actually feel fine. If I avoid gluten then I don’t get sore joints. All of my other blood work comes back great. I was actually lucky to have such intensely visible signs to let me know that something inside my body wasn’t working. Well, was actually overworking. I’m just frustrated. Because nothing is working! My immune system is like Honey Boo Boo on a rampage for pig skins and the doctors canNOT make it stop. They are stumped. Both of my rheums (let’s just call them rheums because I’m lazy) can’t figure out why my vasculitis won’t go away. I’m on huge amounts of steroids in addition to the extra doses they jab me in the boohiney with every time I enter their office. The last time I was there they were talking about adding ANOTHER new prescription to the mix. But I can’t. I just can’t. They will throw you anything you ask for. Sleeping aid? (Steroids MESS up your sleep). Antidepressants? (Steroids make you a little…edgy. I kicked a wall. Bonus points for not kicking a human, right?) Luckily for me I can manage to sleep 6 hours a night (BUT IN THE NAME OF ALL THAT IS HOLY DO NOT WAKE ME UP IN THE NIGHT!) and my usual vibe hovers around chill so edgy and irritable is pretty manageable.
But here is the deal. I feel like my body is giving me a gift. It’s literally screaming at me to let me know that something is horribly wrong in there. My first instinct is to just lift this heavy burden off of my lap, hand it to a doctor and say, “Here. You. Fix this. Fix Me.” After all, I’m busy. I chase kids and clean up enormous messes and rewash the same load of clothes 3 times (that’s just a damn commitment to procrastination) and never, ever, ever feel caught up. So please. Fix me.
But what happens when they can’t? Or what happens when I realize that my health is up to me? That I will have to make big, big, bigger changes to the way I shop and eat and think. I’m not shunning western medicine. I think there is a place for it. But I think there is another way too. A way to stop fighting my body and start listening to it instead. To work with it. We honestly take more care into the fuel we put into our cars then what we put into our bodies. I’m just as guilty of it as anyone. I’m the one that was eating Cheetos with my head stuck in the pantry tonight. I’d call myself a lazy hippie. I know most of the facts…I’m just too tired to use them half of the time.
This blog will be my journal of my journey. Journey Journal? Ugh…do NOT say that 5 times fast. Of course I’ll ramble on about other stuff too…I can’t help but make fun of my kids on occasion.
I mean, they live in their Underoos and dip their bacon in butter…who wouldn’t make fun of that every once in a while??
And of course there will be food and book talk (gluten free…sorry ’bout that). But I thought this experience would be interesting to share and I’ll try to do it with humor. And no more creepy skin shots. (Fingers crossed).