Un-Aversary, Year One



June of 2011

  Good morning! Here we are, another Monday, another test. And this is about the point my brain got to before it realized this is roughly the anniversary (un-aversary) of the advent of Raynaud’s and the Zombie Shuffle…the first official signs that something was “off” in the day-to-day operations of my bod.

 It’s definitely been an interesting year that’s led me to where I am today. I’ve been pissed! I’ve cried. I’ve laughed…and I’ve done my fair share of bitch-festing. But, most of all, I think (and hope) I’ve grown as a person and not just a patient. (Or pain in the ass…)

 About this time last year, I was undergoing all manner of MRIs and physical exams while they searched for signs of Multiple Sclerosis. Like any good patient, I was also reading EVERYTHING I could get my hands on. So many symptoms fit, not to mention they’d already looked for it 15 years prior, finding nothing more than (at that point) unexplained vertigo and headaches. (They finally settled on Meniere's Disease, involving too much fluid in the inner ear.)

 During my read-a-thon I did come across a reference to a website called Chronic Babe that ultimately put my feet on the path to being more involved in my own treatment instead of a passive follower. When you sign up for, they send an wonderful booklet (How to Be a Chronic Babe) that gives some AWESOME tips on keeping copies of your own records and med lists. THIS has made the last year SO much easier!

 As I recently explained to a friend who is going through testing for “Unknown X,” Docs generally suck at sharing info, so when you’re seeing several different Specialists it’s a true bonus to have copies with you of what tests have been run, when, where, and the results. What one Doc misses, or even thinks he sees, another may see something completely different. (Voice of experience on this one folks!)

 After they failed to find any lesions or atrophy that would indicate MS, they moved on to Lupus. Oh yeah, there is so much overlap in symptoms with so many of the Autoimmune diseases, it can become a wild game of Pin-the-tail on the diagnosis. THIS? Is the hardest part to make it through.

 And here’s a bit of bitter truth…sitting here this morning I am a very tired woman. I’m tired of Doc offices and tests. I’m tired of speaking, asking questions and all too often feeling as if I go completely unheard. I’m tired of taking pills. I’m tired of not only missing the income from a job I loved, but watching the medical bills pile up into a veritable mountain of body-generated debt. I…am tired of being sick.

 I am hitting the “I wanna quit all this crap” wall of Year One. With a resounding SPLAT!

 And it’s perfectly normal and OK to be in this spot. Everyone (EVERYONE) I’ve talked to who has lived with chronic illness as part of their lives for any time at all hits the same wall. (As evidenced by all the face-smears left on its surface.) So I know I’m at least in good company.

 I’ll make it over this hump and sometime down the road, I’ll probably hit at least a few more. And I’ll deal with those obstacles when I get there, but I gotta make it around this anger-trap first. And one thing I’m finding the most intriguing about it is I’m not just angry for myself. I’m angry for all of us!

 I’m angry for the friend whose Medical Team took 10 years to issue a final diagnosis. I’m angry for all of those who live in daily pain, feeling lost in their rooms, separated from life by four walls, a comforter, and quiet darkness. I‘m angry for my other friend who has one list of symptoms and  another of questions. I’m angriest for those whose family and/or friends don’t understand and hoist upon them the stigma of “faker,” “lazy,” or “whiner.”

 I’m angry for us all! *deep deep calming breath*

 This morning as I grab my standard-wear hoodie (under 80 degrees, so gotta remember to keep my core nice and warm), my cane, and my traveling med file, I head out for yet another too-early morning test. This one will determine if there’s a problem with the weak muscle in the right leg, or if I’m just not working hard enough.

Today...

 And I know that my anger will not only pass, but it’s perfectly normal. I know I can take the useless energy that would fuel my temper and instead refocus it towards speaking up for myself and others. I can tell my dear friend (who HOPEFULLY is only going to find out she’s been burning the candle at both ends) the things I’ve learned the hard way over the last year. I can recommend books I found helpful in learning to speak for myself. I can tell her it’s her right to Doc-hop if they’re not the right fit, listening, or even (sadly) not competent. (Hey, I’m sorry but it happens!)

 And I can tell her and others that, yes…this shit sucks sometimes. But you know what? You’re alive! You can still find something good in each day to be grateful for. You can still laugh and love, no matter what your rebelling bod may throw your way. And on those days you wake up and realize you’re angry? Talk to a friend or someone you love. Give the anger voice and let it out so it doesn’t sit and fester.

 Then you take a deep breath, let it out in a slow sigh, and remember you’re only human and it’s OK to be pissed once in a while.  After that, you can smile, gather your strength about you like a suit of armor, and get on to the part about living.

 May your day be filled with few frustrations, many more reasons to smile, and the knowledge that you’re never truly alone in your struggles and there are a lot of people out there rooting for you!