Friday, May 21, 2010

So What Next?

Wellll, I'm still crashing. Months of tiring research, followed by begging countless local docs for my life, I deserve a break. No? Well what about undergoing the so-called gold standard of CCSVI testing only to come out stenosis free? Surely, that's enough to bring an already down girl - down even lower. If not to recover physically, it was more than apparent I needed to recover mentally.

Saturday after the show I spent my afternoon reeling from the days prior confrontation. Stewing in adrenaline I couldn't just lay down for a nap. It would be a long, treacherous climb down from the high I had been on. Maybe I had gone too far. And if I did, I am truly sorry. But maybe I was looking for someone to take all my frustrations out on. Maybe that pitiful, unsuspecting lady was to be my something tangible. Maybe putting a face on things would even my odds.

Tired of fighting what I could not see for so long, perhaps she had been a Godsend. Fighting the system. Fighting the normal way of thinking about my disease. Fighting for a chance at a better life. Perhaps this nameless lady, if nothing else, had been a sign. I needed to train harder. I needed less distractions. I needed to train with the King of Sting. The Master of Disaster. The one and only Apollo Creed. [[insert sappy, uber inspirational musical montage here]]

To quote another 80s classic . . . I needed to, "Focus, Daniel-san! Look eye! Allllways look eye! And don't forget to breathe!" Can you believe they're re-making "Karate Kid" without starring little Ralph Macchio? Maybe he'll get to make a cameo appearance. Go ahead and sweep the leg, Johnny. You're still gonna get your ass kicked. No matter how many times I watch it - Danny always wins. Always! But, there I am again, off the subject.

Back to the fight. Not between me and Lady Nameless, but between me and well -- not only does my opponent have no face, he too has no name. No wonder I'm losing. I'm fighting for my life in a completely dark void. No walls, floors or ceilings. Just space. I've been frantically punching and clawing at nothing. Towards nothing.

It's no wonder I'm growing exhausted and weary. I need to reorganize. And prioritize. First order of business I need to put a name and face to this. This may consist of several different names and faces along the way, but as weak as I've grown I must reassess my initial knee jerk response to go at this fast and furious. I just don't have - as my dad would have said - "enough shit in them britches!"

First I will focus on my follow up appointment with my maverick doc. We'll call him Maverick since this is still somewhat of a covert operation we're all taking part in. So now we have a name. And for some reason or another he reminds me of the actor Sam Rockwell. Especially his charater Eric Knox in "Charlie's Angels." So now we have a face. What to do? What to do?

Much of this attack will hinge on what he has to say at the follow up. I have been pondering several possibilities of how it may go: 1. He's reviewed the films further and after having done extensive homework on the disorder, he now want's to go back in and balloon or stent me. Yeh, I know! Stop dreamin' right?! It could happen. And that's what I'm prayin' for but, I'm preppin' for just about every other possibility.

Like 2. He's terribly sorry but he just knew going in he wouldn't find anything. At this I plan to respond, "Exactly, dear doctor! You didn't go in with an open mind!" With this I will request that he sends the scans out to all area interventional radiologists and vascular surgeons to see if their less neurologically focused eyes could see anything out of the ordinary." Whether or not he obliges - I plan on taking this approach on my own should need be.

3. He admits to having ballooned my stenosis and lied about not finding any in order to test people's supposed instant relief of symptoms. Well, with this I will thank him for being one sly, unethical SOB. Then I will report my walking backwards and my improved peripheal vision. Although both were prolly due to the massive amounts of adrenaline racing to my heart - still they had been at least temporary improvements. Should this improbable scenario play out, I will accept the lack of symptom relief and await a follow-up in 6mos. to determine if the cleared veins stopped any new plaques from forming. This would in itself be enough of a success story for me.

And finally, 4. He says he tried and wishes me luck with my future endeavors. At this I will ask, "You mean like my upcoming trip to Poland?" Depending on his response to this which would most likely include a "goodbye" I will commence with the shaming. With his dismissal of me as a patient having already happened, I don't see as it could do any harm.

I will continue, "It'll surely suck to go that far but once I'm back - I'll be sure to bring you some new scans and show you where my stenosis were." If he still stands silent not offering to at least review his scans, I will finish with, "Maybe that way once you can see exactly what it is you're supposed to be looking for you can begin treating us by the truckloads." If this was hooking him at all I would go on about stardom and being a rock star. Not only would all of the midwest go to him. Perhaps all of the US and Canada. Nothin' wrong with a little ego strokin'. A girls gotta do what a girls gotta do.

Now that I feel like a CNN or FOX News correspondent having leaked our military's plan of attack to enemies - I'll continue on with updating you on my greatfully uneventful week. I mean really. Do they think enemies of the U.S. do not have cable TV or internet? We might as well put it on Facebook. Attn: Combatant Terrorist Cells -- the president of our great nation is due to arrive in Syria this evening at promptly 8 o'clock central standard time. He will be the third man to exit the plane and will be wearing a navy blue pant suit with a beige shirt and burgundy stripped tie. Please note that your clearest shot at him would be from the Gate A waiting area to which access may be obtained thru . . . blah, blah, blah! I go off on tangents sometimes. But why report our gameplans when you could be reporting on CCSVI? Surely Maverick would be too busy looking over my scans and researching to be following my blog!

So Amelia calls to report she and her crew had safely made it home. And she wanted to thank me for coming. I told her I sure was glad I had, otherwise Mom would have been without a space. Busy with preparations and nerves, little sis had missed all my excitement. She enjoyed my filling her in and I enjoyed hearing of the sour answers Baby Girl had given the judge. I couldn't figure why she hadn't won leadline. Now I knew. With this I became inspired to share with her a few tricks of the trade. I asked Amelia if my coming down to "pretend" judge would be okay. She said "sure" because as Mom had always done it for us - her and Baby Girl were already hard at it. Amelia even told me Baby Girl even took turns at being judge leaving Amelia to lead tiny Leo. Now that, I'd love to see. With the close of that convo - I headed to bed.

Sunday morning greeted me with aches and pains in places I'd forgot even existed. I so wanted to make it to church, but didn't. Not only would it have been physically hard on me, it would have been mentally trying as I'm sure many would want to know how my procedure had gone. Prior to my going they had annointed a prayer cloth and prayed for me. I love my church family, but explaining to them, or anyone for that matter would be difficult. No blockages usually warrants a "Praise God!" or a "Hallelujah!" Not so in my case. Can I get an "Amen?" I'll wrestle with how to tell 'em all next Sunday.

Monday was the same 'ol, same 'ol. Still keepin' up with my new MS friends on Facebook, but takin' it easy on any research. Tuesday I dared venture out of the house again to get a CD of my scans. Why haven't I posted them yet? Why haven't I sent them out all over the world yet? Remember above about my learning to prioritize? Jason's made a couple of copies, but as of right now I'm focusing solely on Maverick. I've symbolically put his picture up on my dresser's mirror like Rocky did with his picture of Ivan Drago.

And I've been a little nervous that I'd see two huge, gorgeous perfectly straight jugulars staring back at me. So honestly, I haven't even looked at them myself yet. I plan to this weekend. I promise. Tuesday, Tuesday. 'Lost' and 'Glee' are on again and opposite of each other. Talk about decision making. I went with 'Lost' and boy was I glad I did. Locke says to Ben, "Benjamin, you never cease to amaze me!" I'm so gonna miss that show. Don't forget the finale is Sunday.

Then hump day. More uneventful, rainy time spent on my couch. I've recently discovered Farmville. Way easier than the real deal. Super addicting. Hold on peeps, I gotta go check my crops! So with nothing on Wednesday night we watched the pilot episode of '21 Jump Street' on Netflix and dined on DiMaggio's pizza. Once in bed we watched last night's 'Glee' guest starring Neil Patrick Harris. My dear anti-choir husband, who just so happens to have a pretty decent singing voice, had no clue Doogie Howser, M.D. could sing. Yep, this show is so good even Jason likes it. Our fave is Jane Lynch's Sue Sylvester character. I'm a Gleek! Heck, we are Gleeks!

Thursday is trash day. And that is always cause to smile. When will this soreness as if I've ran a marathon ever go away? Anyone reading remember Coach Tucker's two-a-day summer volleyball conditioning. I haven't felt this sore since enduring that madness. Ahhh, those were the days! I bet Coach Tucker and Coach Sylvester would hit it off big time. A match made in Heaven, no less.

So we all got gussied up for Asa's Cub Scouting annual Blue and Gold banquet. By gussied up I mean to say I brushed my teeth and hair, and put on pants and a bra. I know, right?! I went all out. So we get there and it takes forever. My big man is now a Webelo - even though he had spaghetti sauce all down the front of him as if still only a Tiger Cub. He's a passionate eater for sure, but he get's it honest. My right leg having fallen completely asleep I whisper to Jason that I have to leave early - as if my other leg were to doze off we'd be in an immobile world of hurt. I exited as stealthily as one could with a severe limp, a cane, and a strapping 250 lb man helping them out the door.

Once home, 10 minutes shy of my promised return time, I bolted upstairs to find "Grey's Anatomy" on TV. I had wanted to be home well before 8 to properly warm my TV up in preparation forthe "Grey's Anatomy" special 2 hour season finale. Can't have missed much I'd thought. Wrong again, Angela. I turned on my set to find Alex lying in a pool of blood on the floor of an elevator. Damn! At the first commercial break I came to I phoned my Mom. The only one I knew who was as big a Grey's junkie as me.

She answers with her voice all shaky demanding to know where I had been as she has tried to call me 5 times already. After I tell her, she excitedly continues, "Oh, my God! Oh, my God! Oh, my God!" She fills me in as best she can while trying to keep track of how many rounds the gunman had already fired. And I learn that my favorite of the show's new character's was already gunned down. "Dead?" I asked. "Yes," my mom responded, "shot at very close range right between the eyes." And two security guards so that's at least 4 shots if everyone downed thus far only received 1 each. Gunmen ourselves, me and mom always pay attention to that sort of thing. Shows back on, BYE!

More chaos ensues. And with the next commercial break, I answer the instantly ringing phone to hear mom ask, "How many shots was that?" Another nurse and nameless white coat wearing man down, she desperately reasoned that he would soon be out of ammo. At this point we were only 30 minutes in to a 2 hour show. Thus, I played devil's advocate reasoning that he'd been a smart enough guy to have made it that far unscathed and even undetected, then I'd have to put my money on his being a smart enough man to have brought along at least a few extra clips.

To that she responded, "Noooooo!" and nearly hung up on me. Anyways, "Grey's" was prolly the best episode ever. Complete with a risky aorta repair with no attending and a crazed gunmen ordering Yang to stop whilst he brandished his firearm at her temple. Damn! And Avery faking Derrick's flatline. Ballsy brilliance. He's my new favorite newby. Followed closely by Owen who took a bullet trying to save Christina.

And what up, Calliope? You had been my all-time favorite 'til last night. I'm not nearly as well put together as you, hell, I'm even crippled and completely lacking depth perception, BUT had that crazed man put his outstretched hand out to me - complete with palm open and gun resting unsupported on it - you bet your ass I would have tried to snatch 'er up. I'd have lit that room up so bright only the blood on the walls could have dimmed the light. Damn girl!

But was this blog about me or Grey? Or maybe Izzy? Alex talking to who he thought was Izzy in his dying moments. That even made me cry people! I did have tears left. Luckily these didn't hurt as much as the ones I'd shed the previous week. So back to me already. You can go to and watch the show for yourselves. Geesh! I always struggled writing reviews for movies I liked, always wanting to give a play by play. And well, there's not enough room in any of the newspapers I'd written for to entertain such nonsense. Space should be saved for important breakthrough stories like CCSVI! Yeah, for blogs! Especially the neverending ones . . .

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