I've been sayin' it for years and this whole CCSVI situation has done nothing but prove my arrogant rants true. Every docs visit, probably since around my dad's death, I've gone in thinking, "they won't find anything." Well, that's good, right? Not exactly. They won't find anything 'cause they refuse to even look!
When 'this' is a problem or 'that' is bothering me . . . no matter what ailments I go in with I always ONLY come out with MS. Guess what? I could have something else. And no, former doc (rhymes with mice, but starts with an R), I'm not a hypochondriac. I just want to be heard. 'Cause contrary to popular belief I avoid docs at all costs unless I really need 'em. For example, a limb has to be completely severed. If it hangs from some stubborn muscle (pun intended), I will not see a doc. It'll heal - I've seen enough of them already, seriously.
Let's hit the REWIND button, shall we? After years of saying it was all just in my head, my former aforementioned doc finally suggested Multiple Sclerosis. Finally he had been right. Quite possibly his first and last time - ever. Anyways, prior to this I had been one sick little girl. For those just joining the viewing audience I was in and out of Deaconess since 2 years of age. No joke - nurses didn't even need name tags at one point.
Countless urinary tract infections, a heart murmur, an uneeded appendectomy, several sepsis scares, unbreakable temps at 104, an actual exploratory surgery, half dozen upper and lower GIs, a scarred kidney and a completely reconstructed bladder later - all just MS. I'm exhausted just typing all that crap. Oh, and I might have missed a few days of school somewhere in there Mr. Woodall! Angela Truant Orth, should've been my name.
In the meantime, while dad battles high blood pressure and heart disease, mom is diagnosed with diabetes. As heart attacks hit followed by kidney failure and eventually two trips to Cleveland Clinic for quadruple bypass it was cancer that finally took him. All the while and still today - mom's diabetes worsens. More recently g'pa on mom's side has been striken with heart problems. G'pa on dad's side? Died young from a heart attack. And g'ma too on that side from cancer. Lucky me, I guess, 'cause I can't inherit none of it - I've ONLY got MS.
There's been only one tiny exception to this rule. Maybe 2 years ago I was prescribed meds for high blood pressure. Wanna know why? Not cause I could actually have high blood pressure. Not cause my numbers averaged 140+ over 100+ or cause dad always battled it eventually leading to his need for dialysis. Hereditary? Nope! I needed it cause some of my MS meds tend to raise blood pressure. Yikes! "Whatever," I'd said, "just give me the damn scrip." Ours truly is a hate-hate relationship.
So how'd it go between us Friday? Grrrrrrrr! Mom was there and she thinks it went well. Well, better than she'd expected it to anyways. I wonder how bad she really thought it would go. An avid reader of my blog, had she truly thought I was packing? Had she worn her Kevlar in preparation of bullets flying? Alas, no blood was shed. Only tears.
Basically, having caught him off guard he denied anyone anywhere works with veins. "Veins," he explained, "are sacrificed all the time." I get that. I get that our bodies grow new routes when intended ones are blocked. As I told a friend Saturday, "There's this new thing out there called the internet! And I can read!" C'mon already. I suffer from MS, not from stupid.
So collaterals, they're called, have formed to get the blood where it needs to go. Great! Miraculous things, our bodies! BUT, tons of tiny collaterals might just not be enough in this particular situation. It's your brain for heaven's sake! Consider blood backing up (refluxing) into the brain and hanging out whilst it awaits exit via the collaterals. Hanging out would be fine and dandy if iron deposits weren't left behind causing damage to the brain. Damage, I don't know, that may make one drag her leg, feel tired, or piss herself. Geesh!
Very similar if not the exact tests have been performed on my dad, g'pa, g'ma, and now mom too for peripheral artery disease in her legs. I explain to him I've even been in attendance for most of these procedures. "Arteries, my dear," he professes, "all arteries." So then he decides not to even write for a test 'cause even if there are blocks ain't nobody gonna unblock 'em. "Unless you wanna go to California and pay $100,000," he smirked.
I replied, "It's closer to $10,000 and in Poland." I went on that I was on 6 different waiting lists but that I had hoped to try and stay local. Oh well. Hope in one hand and shit in the other, right? I may have limped and hobbled out of there but I did it with my head held high - that head sittin' just above those blocked veins. No tears. No way, until we returned to the car.
So Saturday we walk (I rode), went fishing at Rend, and spent our entire Sunday recovering. Truth be told this beautiful Tuesday afternoon - I'm still suffering the consequences. Monday rolled around too fast, but with it came a bit of silver lining. Two CCSVI stories actually made the news this weekend and were posted about Monday morning. They were small snip-its on CBS affiliates in Seattle, Washington and D.C., but hey, gotta start somewhere. Where you at 25, 14 and 7? Still no word from you!
Then I dive in and find Georgetown's research has been given a green light. OK, I'm on that list but I must get a local docs approval. (Good thing I didn't shoot him, heh?) I put my mom on this task as I have become too emotional to deal with the probable rejection. I return to Dell to discover news from California too. Apparently the testing itself via a new MRIf machine doesn't need govt. approval. And they'll pay me $50 to test out this new machine. To good to be true? No. This neuro's son was just diagnosed with MS and guess what? His boy's jugular is nearly completely blocked. Making sense? And guess who's friends with 'em all on Facebook?
The very same Facebook friend posts a pic of his blockage not too long after our email correspondence and I start longing to see my recent test results. Would I be able to see a block that easy on mine too? This task I pass to Jason. This potential rejection would be better suited with anger. To clarify, I'm better at crying with mom and cussing and yelling with Jason. Potty mouths upset mom. Sorry mom.
Then almost back to back phone calls come in. Mom says get the papers to him and he'll sign 'em. Well, that was too easy. And then Jason calls to say he's leavin' work early so we can go pick up a CD of my scans. What? Wow. Things was startin' to look up. Dear Tuesday, What must you have in store for me? Perhaps a nap? That sounds delightful!