Friday, April 30, 2010
"UNINSPIRED" by yours truly. Yep, that's me to a tee. Completely, utterly uninspired. Why haven't I blogged? Why should I? Big deal. If docs can cancel appointments surely I can fail to blog when promised. And it wasn't just any run of the mill doctor's visit. This was a long awaited, hard fought appointment, to give me my life back - flat out, stone cold - CANCELLED.
They officially called not a full 24 hours after calling to schedule me and claimed it was only postponed. Hmmmm. Queen's song dances thru my mind at this point, " . . . and another one bites the dust. And another ones gone and another ones gone . . ." At least they're not having them killed. Yet.
I am mad. Sure. And you won't like her when she's mad! Sure. But I'm too spent to react as anyone who actually knows me would expect. FACT: Stress causes MS exacerbations worsening current disabilities. FACT: I am stressed.
Ever watch Dollhouse? I just finished season 1 and feel wiped. I sit here next to a dog and behind a laptop - relentlessly searching, but for what I do not know. There was something I had desperately needed - but what I am not sure.
It must be a myth that zombies crave brains because I'm not even hungry . . .
More later, maybe. Maybe not.
Tuesday, April 27, 2010
Yesterday afternoon I received a call directly from the chocolate factory. I was given an appointment date and time for testing and treatment of CCSVI. I didn't have the energy to run crazy thru my house in celebration - but I truly became overjoyed. I had a pen and paper nearby and very carefully wrote down all the information I had been given. Once information was confirmed, goodbyes said, and thank-yous repeated I hung up.
Then I struggled to find the phone to call Jason. Guess what? I had just hung it up and sat it on the table in front of me. Duh! Pull it together! Then I fumbled the phone and from behind tears fought to remember and locate the proper numbers to dial Jason. He answered as always, "This is Jason." Then I couldn't even find words. I sometimes have this problem and knowing it was me, thanks to caller ID, he waited for me to speak. During this pause in dialog I could hear he was somewhere with alot of people present - prolly not the best place to give him my news. I learned later that my news darn near made the 'ol boy cry. And why shouldn't he have cried? He was gonna get back the girl he'd fell in love with and married. (Tears of joy or sadness? The jury is still out on that one. Ha!)
I couldn't tell you how many times I had opened my own candy bars as a kid, just as Charlie had opened his. Finally! Finally! I'd got my golden ticket. I'd read of successful procedures for a while now just as Charlie watched Augustus, Veruca, Violet, and Mike claim theirs tickets. Biggest difference here is the blessed few getting treatment really do deserve it. Anyone suffering from MS deserves Liberation, and as a wise man once said, "that's a fact, Jack!"
I've been sooo happy for each of whom I've been calling 'The Liberated,' but I'd be lying if I said I wasn't jealous. Thall shalt not covet . . . that may be the hardest Commandment to keep. And speaking of keeping things - good news travels fast - even when it's secret. I only told my mom before Jason warned against spreading the news. He likened it to the old wives tale not to tell about a pregnancy before 3 mos, blah, blah, blah - whatever! Fine. In mom's defense I hadn't advised her to zip her lips and Grandma and Amelia and who knows who else knew mere moments later. And I may have let it slip to some dear, dear friends who just so happened to instant message just seconds after I'd settled from getting the news. So is this what jinxed it?
Maybe I had wanted a golden goose too! Had it been greed that got me? I had somewhat arrogantly told the woman calling that if insurance wouldn't cover it, not to cancel me. We can't exactly speak as Mr. Salt did to Willie Wonka claiming, "money is no object," but I knew in my heart of hearts that someway, somehow with help we weren't gonna let that stand in our way. You can't put a price on walking or sight or energy. At least those who have been without these things can't . . .
This morning started at 5. Haircuts, showers, boys dressed, breakfast and homework complete. By 6:45 I felt accomplished and exhausted. Granny and Papa back from camping came to get Abel to have his broken arm checked out. And I stayed to see Asa off on the bus. Just about to take a nap Asa calls from school needing his homework brought to him. Huh? An otherwiwse stellar morning - I'll never get everything right. Gimme a break! So I stagger in to the school (they know I'm not drunk, just disabled) and deliver the papers. Making it back to nestle between my Gooch and my Dell, was tough but worth it. Gooch is a great snuggler. And as for Dell, he was jam-packed with good news today. Hikes, cruises and fashion shows for the Liberated were in the works. You know I want in on the fashion show. But just before I could share my liberation plans of a roller derby team, BLAM!!! POW!! SMACK!!!
Imagine Batman fighting the Joker's hencemen . . . sadly, imagine me as the weakest, lowliest, most expendable, cripple, disabled hencemen. Huh! I'm just sayin' - what I'm about to say SUX the big one!!! To set the mood, I admit I had been Augustus Gloop thru all this. Chocolate of any kind had been soothing my nerves. Was I out of KitKats? Was there any of the boys' Easter candy left? For goodness sake, where are the chocolate stars?
My doc had been shut down! Nearly 24 hours of being scheduled for an appointment - and then nada! Those pesky Oompa Loompas! They must be behind this shut down too. DAMN!!! More tomorrow, promise!
Monday, April 26, 2010
Wii time commenced and moments of Spindler Syndrome set in. We still had time to make it to church, but FORGIVE ME LORD, I chickened out. I feared the drive. I feared falling without Jason there. I feared being too weak to make it from church back to the truck. I didn't even get so far as to fear the drive back home.
Enough with the excuses, already! Fresh new energetic members missing their first service, geesh! What a bunch of hypocrit losers. I know, right?! I would have had plenty of help once there and even more should I have needed it after. But alas I stayed home. 10 years of this disease now and I still fight against even needing help - let alone asking for it. I know, I know. Get over myself. I'm trying.
Another breakfast of poptarts and cereal bars was followed up with wrestling on the Wii and a lunch of overstuffed ravioli. Then we got real adventurous and, guess what? Played more Wii. Yes, we are junkies. What can you do? I prayed it wouldn't storm. And more importantly, that our electricity would stay on. Cause I discovered the hard way - we ain't got no workin' flashlights. Surely the light from the laptop would allow for safe passage downstairs. A better prayer - Lord, please keep us safe!
Then during an afternoon trip outside with Gooch I had the boys accompany me to help in moving various junk away from the house so on future nighttime potty trips I could simply follow the wall around to the side of the house. Waah-lah! Problem solved. Crisis averted.
Supper of soup and bologna, more gamin' and an early bedtime 'cause it's a school night. And prolly more 'cause "Desperate Housewives" is new and there's a killer on the loose. So who's gonna bite it next? More specifically, who wants off the show now? I just hate when my shows stop over the summer. What else is a girl confined to air-conditioning to do?
So God woke me Monday morning. I had set the alarm for 5 to give us plenty of time to get ready without assistance from Daddy. I had even scheduled two much needed hair cuts and subsequents showers with extra Wii time to spare. At 5 I yelled in at the boys. 5:05, 5:10 and again at 5:15. Long story short, I woke again at 6:27 with no alarm other than the voice inside my head screaming, "Get up dork, Asa's gonna miss school!"
Yikes! Sure, it could've been a better morning, but Asa made the bus so that's a good start in my book. I'll take that. Thank You Lord for waking me up. And thank You for another beautiful day. Thank You for all You have done. All You are doing. And all You will do. Amen.
So what now? To recap (and help me keep things straight):
1. I'm now officially on Euromed's Poland list for 2011. Actual date soon to be determined.
2. I'm on Dr. Scalafani's waiting list for treatment in New York which is rumored to resume procedures in June. Trouble here is I don't know how far down the list I am.
3. Georgetown is calling their step forward just 'screening' however per a Georgetown doc's interview all blockages will be treated. I am awaiting my neuro's signature and a proper diagnosis code to be scheduled.
4. Lankenau Hospital in Philly, I've still not heard back from but they ARE treating patients. I've become friends on Facebook with one liberated there and enjoy almost daily posts of her new life and of others post Liberation.
5. I have been in contact with Devin of the Hubbard Foundation in San Diego and got pricing for testing in his dad's fancy new MRf. Trouble with this scenario though is they can't assure my getting in for treatment with a willing doc for angioplasty yet. This hopefully, may change.
6. Both my neuro and GP have referred me to a local neurosurgeon. A bit drastic sounding, (I realize this!) yes, but maybe, just maybe he'll be the guy to give me my life back -- or at least be willing to try. Let us pray . . .
Sunday, April 25, 2010
As the pace began to slow, fearing efforts would completely stall, I pleaded that all the trash be gathered up and taken to the garage AND that we at least start packing - 'cause I knew I'd be in no shape to help him at 5 in the morning. He obliged with the trash request realizing anything left out ran the very good chance of being ravaged by a pitbull. The packing, on the other hand, did not go as swimmingly. But it did at least go, and get done.
5 in the morning came fast. He woke me for a kiss goodbye. A couple trips to the potty later I noticed Asa awake watching 'Kick Buttowski' a little after 7. He wanted to stay and finish the show, but I headed on down worried Jason may have forgotten to take out Gooch. So I had a little Dell time before Asa joined me. Abel wasn't too far behind him. We had a pretty good day just me and my boys. Wii, Netflix, wrestling. Nothin' really worth writing home about or should I say blogging home about.
Breakfast of snacks, deep dish pizza lunchables for lunch and left over Dimaggios for supper. Then as quick as my confidence about handling Jason being away began to grow my motion sensing light out back took it all away. Although barefoot, for best traction, I still fell. I'd gotten just far enough from the house that when the light went out I had nothing to hold on to.
At first I walked toward the sliver of light coming from the living room. Then I gravitated toward the white dog-like figured slinking toward me. Alas, Gooch could be my guide dog. I was gonna be okay. No! I wasn't even THAT far from the house. I had just been a bit disoriented with the ominous lack of light. "Go to the light, Carolanne!!!"
Wham! There's the floor. I found it. Lucky for me I hadn't closed the screen door behind me as per my dear husbands orders. If I had shut said screen door behind me, said screen door would at this time cease to exist. I'm just sayin' - dumb luck - divine intervention - whatever. It was a blessing my eyes opened to carpet.
I could have fell thru and torn the screen door to oblivion. And although I would have needed quite a bit more momentum, I could have come thru the glass door. Or not. It's a door made in the 60s that I'm not positive would even crack if the old oak outside decided he wanted in. That said, if I'd have slammed into it I most likely would have been thrown backwards, possibly even knocked unconscious. Worse yet could have been a fall anywhere else in my yard. And that my friends is why me and Gooch never venture too far. Back to the story . . .
As I'm falling in, our escape artist cat is darting out -- Abel hot on his trail 'til he discovers the patio is wet and its pitch black out there. He returns crying about his cat and as I pull myself up to a sitting position on the floor (all the while thanking God I had fallen unscathed in the house), I look around to discover Asa, also unscathed and even unaffected, resting on the loveseat watching a now annoyingly loud cartoon.
As Abel's cries strengthened I decided Asa's indecisiveness in the matter just wouldn't do. I couldn't help that Asa's cat was smarter (or dumber depending on how you look at it)than Abel's, but what I could do was get him involved. I screamed his name to snap him out of what I have come to call "Spindler Syndrome." Their papa and dad suffer from this phenomenon too. Maybe after CCSVI is conquered I will campaign to have "Spindler Syndrome" recognized by the medical community too.
A disorder involving tunnel vision and hearing loss, this phenomenon may occur at any time, but tends to be more prevelent during certain TV programs or whilst gaming of any kind, i.e. arcade machines, Wii, GameBoy, DS. During an exacerbation, the so-called victim cannot see or hear anything outside of the offending media. As of yet untested, besides the ole go to cure of screaming, I believe electro shock therapy may be of some benefit. Also, unplugging of devices where applicable, seems effective.
So I scream at Asa. First, his name to get his attention. Then I yell, "Can ya find me a flashlight?" I bet he was wondering what I was yelling for a flashlight for while sitting in the middle of the floor. Regrettably, I realize I take alot out on him that should be directed at MS or the situation itself. Before he could even rush to the closet to look for a light I redirect him to his shoes. By God, he's 9, he should take the dog out!
As he readys for the outdoors I come to my senses. It's still dark out there. Maybe even darker now than when this whole ordeal started. If my baby should fall out there . . . guess what crippled is bulldozing out there to the rescue?! Hell yeh! And poor Abe, distraught about his runaway sure didn't need the added stress of a missing mother and brother.
So struggling to my feet I lean on the dog cage and fiddle with the light. Ah, ha! It was at least still working. Apparently the motion sensor had been moved by the storm. Gun shy, I grabbed a nearby rake and felt my way via the grill to just the spot I would have to be to trip the sensor on. I ordered the boys to stand guard at the door. They were to stop outgoing cat traffic and encourage any outsiders in. And should darkness befall me again I had entrusted Asa with the brave task of venturing just beyond the grill to trip the light. Alas, Gooch did his business fast. Abe left his post briefly for a successful rescue mission and Asa stood vigilant awaiting further instruction. Ahhh, who knew I'd become a drill seargent. Dismissed.
Snacks, drinks, upstairs. Prior discussions of who was to sleep next to mommy were moot. I crawled upstairs. Literally. Prayers said and potty visited they climbed atop their bunks clearly dissappointed. Attempting drunkenly to feed the fish while holding myself up against the dresser, I wholeheartedly apologized to my little men. I was sorry for yellin' and fallin' and bein' sick and needin' so much help ALL the time. And in unison, just as if it had been scripted that way for some sappy 80s sitcom, they replied, "We forgive you, Mom."
And with that, before tears fell, I returned to my room. I believe it was a credit card commercial that began the whole PRICELESS ad epedemic! Those four simple words my boys said to me were just that - priceless! They're so understanding. Both are wise beyond their years. Asa especially. My being ill while preggers with Abe and his losing his papa to cancer, made a man of him early. I have to constantly remind myself - he just turned 9.
Sure they drive me batty as I'm sure they do most of you, however they are truly wonderful boys. They both truly do put up with alot from me. And they may not realize it yet, but they miss out on alot because of me too. I pray it won't be for too much longer. We've got offensive lines to obliterate and quarterbacks to lay out. Asa's big in size for his age too. And in football, he's a killer! Go Titans! I get chills just thinkin' about it . . .
As for Abe's specialty, besides being a ladies man, he is as of yet excelling the most at academics. He has fun at everything though, so who knows? He's only in kindergarten. Maybe one day, should his big bubby be blocking for him, he might could run for a record number of yards. I figure either way - two full ride scholarships to Notre Dame will be sweet. I'll vote for the Spindler/Spindler presidential ticket. Won't you?
What will Sunday hold? Maybe I should start on their acceptance speeches. Gotta go, Jason's here!!! Have I told y'all I love him? More tomorrow. Promise.
Friday, April 23, 2010
So my plan was that I was gonna nap this afternoon while the boys were at school. No such luck. Jason found me in the floor folding mounds of laundry that had been backing up. Mom-in-law, I know you hate this. I know they get wrinkled. Refer to above warning, ok? I know I'm pathetic. Jason washes, drys, and throws 'em on the couch to cool off before I can even think about folding and seperating. I tire. Days pass. Piles grow. The positive here is at least the clean pile is bigger than the dirty pile.
Besides the pesky wrinkles, it is quite a task for me to sift thru this mountain to find the boys acceptable matching clothes each day. It wears me down so, that returning to my couch across the 1st floor becomes a problem. Stumbling and bumping walls as I travel room to room. Then homework must be looked over and signed. Shouldn't be a biggy, but if I've dug for clothes prior to this task holding a pen gets to be a tall order.
Yeh, MS sucks! So do I today. I'm feelin' real sorry for myself right about now. And I shouldn't be. Jason let me sleep in again. So he got the big man dressed and homework checked, leaving only Abey Baby for me to corral. And another bonus - I found Dell had hooked up with a new friend this morning. His name is Skype and he is sooo cool. Why Jason would wanna be able to see me while we talk is beyond me. But, I've told you I love him, right?
We watched "Charlie's Angels" AGAIN this morning. I think Abe is addicted. You should see his eyebrows raise when Drew covers herself with only a floatie and asks those two boys for, "a little help here!" Yep. I think he may like 'Starfish.' And I messed around on Facebook and checked email. A good uneventful start to my Friday. If only I had stayed on the couch.
Off the couch, thru the kitchen and into the room with no name. Complete with chandelier we are sure at one time it was a dining room. Since moving in we have made two completely different rooms our dining room. Long story short, I hope for this far away room to one day become part of our currently not so big kitchen but as of yet nothing has been done with it besides the painting of its once velvety gold and green wallpaper. Most recently we've added a couch and a mountain of clothes.
Remember science class? If you could chop a mountain from its peak to the bottom you would find layers, right? (I did miss a bunch of school.) Well, trying to find Abe something to wear was near to impossible today. Clothes became so scattered I had to sit amongst cascades of layers and begin folding just to make a path out of the chaos for myself. You get what you deserve for putting it off so long. Fine. Whatever.
So homework had to be looked over and signed from the floor in this faraway room with no name. Signing became harder even than usual without a table. Upon Jason's 11:30 arrival, homework still isn't complete and Abel is in nothing but socks and underwear. If he'd have had a floatie, maybe he could have just worn that.
Jason jogs him upstairs to find clothes, takes the Gooch out, and leaves me in the floor. Yes, I sure could have used some help up, but I could tell he was elated I was making progress. My arms felt so heavy I didn't know how I was gonna get up. But I did! Did you know it is possible to fall up and not just down? Well, it is folks! I have done it. If only Skype could have caught my struggles . . . funny I'm sure!
So once bounced around the no name room like a pinball I oh so gracefully make it to the recently uncovered couch. It's brown. I had forgotten. Anyways, too exhausted, and now dazed, to return to my living room couch for a well deserved rest before braving the stairs to Sleepytown I commenced to pairing socks. Simple, right? A no brainer. Not so readers! Just not so. I had a heck of a time.
First I would cognitively struggle with finding proper mates. Then came my hands failing to insert the end of one sock into the other. I've seen stroke patients struggle with this in rehab hospitals before. YES, THIS IS SCARY SHIT!!! Had I had a stroke? Nah, just MS. No worries. What should have been a relaxing, even mind-numbing job of maybe five minutes became a mind-boggling 45 minute stressful ordeal. I admit a couple of tears may have fell in frustration of the whole situation but at least my legs should be rested enough to go directly up to bed from here. Surely, right?
DENIED again! Hobbling to the bathroom (a trip I learn I should've taken on the way to the no name room instead of back from the no name room) I realize even going near the stairs would be hazardous to my health. Ah, ha! That'd be a cool blog post title. And alas my latest post was born. But would I be able to make it back to Dell? And once there, would I be able to type?
Thank You God. Thank You that I made it here to Dell. Thank You that I am able to type. Thank You for my ability to have clear thoughts and be able to communicate them. Thank You for my sight. As down as I get sometimes, I praise You and thank You, Lord for all that You do. Now can I get some help up the stairs? Amen.
Thursday, April 22, 2010
First things first. Tuesday night the toughest part of getting my test results was my walking to get them. Yes, Jason dropped me at the door but I did have to walk to the records window. Pathetic! I know. Once there, all I had to do was sign for them. I struggled thru my still new to me, somewhat longer than before, signature (it never looks the same) and ran with the disc hoping they wouldn't change their minds. No? You got me. I didn't run, but I did leave watching my back - just knowing nothing could be that easy.
No one tackled me to the ground to wrestle the disc away from me as I waited for Jason and boys to bring the truck. We'd made it to the exit of the parking lot when I turned to my uber smart super computer geek know it all technology husband and said, "We prolly won't be able to read anything off this disc." His adorable wrinkled brow dismissed my doubt with a grin. I love this man. Have I said that already?
The rest of the evening was spent looking at zillions of pictures of my head. Yes, Virginia there really is a Santa Claus. And I really have a brain. I gots proof people. No trip to Oz for me, unless its for a cure. I've got the brain, and pics to prove it. I've got the heart, 'cause I can hear it pounding after I go upstairs. And the courage? Got it! I've already offered to let all interested parties give clearing my veins out a go. Offer still stands, and still no takers. Who's callin' who chicken? Chicken! So, yeh, I ain't scared!
Wednesday. Hump day. More like, how 'bout call it how many brick walls can you hit and still survive day? Grrrrrrr. Georgetown hadn't called, while Facebookers were gettin' appts. scheduled. What up doc Pee? (Rhymes with pee, starts with L) Guess what? He ain't signing anything. One paper that gives directions on what is required of patients mentions "neurologist signature."
The actual paper requiring the signature (which I could do by myself by the way, with my feet, blindfolded, doin' 60 or so off roadin' in mud and ruts from the unrestrained bed of an '87 Chevy 4x4, while having a seizure, and . . . well, you get the point) said nothing on it but referring physician. Are you not a physician, Dr. Pee? Crap!
Anyways. Huh! Then other Facebookers get into the Philly Hospital I'd contacted. Welllll, wonder when they happened upon this place? Surely not since I had, cause I still hadn't heard back. Bum luck I tell ya. Grrrrrrrr! Interesting fact: I not only type the word, "Grrrrrrrr!" I actually growl. Outloud. Hear that? Yeh, I knew ya could.
Wednesday night we joined the church. Point Township Church of the Nazarene. Great place, even greater people. I'd been going there since I was a little girl - about time I made it official. I'm so blessed to be a part of this church and it's wonderful church family. Amen! I even stood up during most of our entrance ceremony. If only Uncle Scott would've prayed faster! What's with pastor's these days?
Kidding of course! I love my Uncle Scott and his entire family. How many of the congregation can say, "The pastor gave me my first Bible?" Some? Well how about, "The pastor gave me my first Mountain Dew?" Anybody? Anybody? Didn't think so. I was the first Angie he ever loved, ya know. Allright, already! Again with the blathering on . . . isn't that what blogs are for?
On to Thursday. Trash day. Yeah! Or not. Jason let me sleep in this morning, thus I wasn't up to nag him about the trash and suffice it to say - our trash remains. Gooch doesn't mind though 'cause he's been unusually fond of something in the week's trash, so this merely means he'll have another go at retrieval of said object. And I thought he was a full-blooded pit. Alas when there's something worth retrieving I think we've all got a little retriever in us.
That silly analogy made - after my day today - I'd prefer the pit bulls' skills to the retrievers' skills for my CCSVI search. After church last night, I decided again to give it to God. I wasn't getting anywhere myself and on top of that I was growing weak. Plus, three going on four weeks now I've basically been ignoring everything else going on around me. Striving so hard to become a better mother and wife - who had I become in the mean time?
Just before 8 as I was snuggling with Abel and begging for just one more minute in bed - the phone rings. It was Deaconess needing more information so they could better quote me on costs for a procedure I had inquired about. I can't answer any of this kind woman's questions as I should have been able to. I explain neuro says its vascular. GP won't refer to vascular cause MS is neuro. And I just filled out countless online forms to everywhere hoping someone that would listen would call me back. And she had been the first. And I thanked her! She promised to nose around a bit and she what headway she could make. And I thanked her again!
Then to check my email. A couple rejections, but with sorrys and well wishes. Okay, at least they'll go to bed tonight knowing there's a new condition out there. It's officially a condition now too. Yeah! Celebrate! No? Not so quick - still nothing from Philly. And Jason's faxing Georgetown papers to my neuro. Hope that goes well. My fingers aren't crossed since I'm typing, but my legs are, hmmmmm, when did I potty last?
So back and forth with the super ultra kind Cali guy who actually has MS and is working for his neuro dad - only to discover they have to have a scrip from my doc going even so far as to require documents on kidney function. Yikes! That can't be good. Jason's been the one corresponding with him, but jokingly refers to him as my boyfriend. Ha! I guess me and my boyfriend's relationship has hit the skids. Bummer, dude. It would've been cool to see the boardwalk where they made 'The Lost Boys.'
Cali's still a maybe I guess. Along with the old original Bulgaria, Poland, NY, Philly, Georgetown and Owensboro?! What? So the Deaconess lady gets with Special Procedures who recommends a neuro surgeon. Invasive sounding right? Well, this maverick seems a bit intrigued. I hope he stays that way. He needs my family doc's ok to give things a look see first. Huh! After tomorrow morning I may be in the market for a doctor. I only hope this neuro surgeon doesn't lose interest in the meantime.
G'pa is from Kentucky. Gooch is from Kentucky. Could the guy to give me my old life back be from Kentucky too? Pray he is. We planted Kentucky Bluegrass in our yard and its starting to come up. Could that be a sign? Hum with me as I fumble the Kentucky State song. Hmmm, mmm, hmmm, old Kentucky home, hmmm, mmm . . .
Tuesday, April 20, 2010
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!
Sunday, April 18, 2010
Seriously though - bring your hiking boots or all-terrain vehicles. I was wanting my Dad's four-wheeler most of the morning. Dang, it was a rough ride. Jason muscled me chair and all over most of it but some of our path I had to actually leave my chair. What of those unable? Luckily, they must have stayed home. I saw only one other chair and it was one of those fancy powered jobs with the big tires that even curbs can't slow. I don't suffer vehicle envy too often . . .
Anyways, we came, we saw, we conquered. We'd printed a bunch of fliers on CCSVI with the intention of spreading the word - not the dime. We thought if we could successfully reach at least one person it would be worth our time and effort. So we arrive and freeze up. Huh? Oh well! The weather was nice. No harm, no foul. We'd just wait for the walk to start and we'd retreat.
Then a guy's voice boomed atop the growing crowd. "Welcome. Blah blah, blah. No cure, no fix, blah, blah, blah." Well those was fightin' words! Jason grabbed the fliers and off he went thru the masses. Then an old friend and her daughter (the friend part being old - not the friend herself) showed up to take part. THANK YOU, GIRLS!!! They completed the five mile walk in 1 hour and 20 minutes. Wow! And they passed out fliers too. Thank you, thank you, thank you!
And in our 1 mile trek we touched at least two fellow MSers, exchanging e-mails, etc. If indeed spreading the word was the right thing to do. We had done good. And all before lunch! How so un-MS of me. Back to the Vern and Jason, who should have been exhausted by the way, mows the lawn, gets lunch and returns to ask, "Who wants to go campin'?" Huh? I was just beginning to regain feeling in my bum, but sure, why not?
I even drug Gooch along to assure I wouldn't have to spend the night. Sneaky of me, heh? Upon our return home later that night he went straight to his kennel and began snoring. Poor guy! He was one tired pup and though I spent the remainder of the day in a comfy lawnchair or reclined truck seat - I was spent too. Ahhh, the weather was heaven sent though. I really must try and spend more time outside.
What's this? A freeze advisory. We switch from the A/C going full out back to the heater. And guess what? I swelled up so big last night I missed church this morning and it's uncomfortable even typing. Yeah, MS! I soooo want liberated - but, this morning having missed out on God's Word, sitting here swollen and exhausted - perhaps ignorance would be bliss.
At least I'd have my last few weeks back, right? If only, right? No! You know what? I'd rather know there's hope. I'd rather have my ten years back! "Boys, one day you might just get to meet your real momma. She's pretty cool. Awesome, even. She's who your daddy fell in love with way back when. She's soooo excited about meeting you. There's so much stuff she wants to do . . ."
Thursday, April 15, 2010
I sat attentively through the entire episode and got absolutely nothing. Nada! There was drama in the model's house. Nothing! The Molly Ringwald, Annie Lennox lookin' chick got the boot. So what? I didn't care. Still don't. Zilch! Thus, a mystic, Tyra Banks may not actually be.
It wasn't until this morning as I ignored my surroundings and went straight for Dell that a message was sent to me. Not an email or post mind you, 'cause it happened as Dell was booting up. The little windows emblem had appeared followed by my desktop background of Gooch. Then icons galore appeared to the left of his head. Ahhhh, where to go? Infinite possibilities.
You know what? I didn't care where I went. What good was all this exhausting so-called work doing anybody? It certainly wasn't helping my family. I'd been neglecting them since this whole story broke. "Just a minute darlin' Mommy's on the computer."
And me? It's not doing me any good either. Countless inquiries to docs, clinics, and media only to get back - one, just one of hundreds sent out, one genericesque, "Interesting. We'll look into that." My heart had not been where it was supposed to in quite some time. And now, well, it wasn't anywhere.
Hmmmmm . . . missing my heart? Maybe that had been Tyra's message all along! So I commenced to doing some more research, this time of the cardio nature. I read til my eyes crossed. Did you know right up the road a ways in little ole Evansville, Indiana we have trail blazing heart docs.
Seems to me they like being firsts. For example, first to do this. First to offer that. Word on the net is they do pretty awesome c - a - r - d - i - o - v - a - s - c - u - l - a - r. Get this? Vascular is fancy talk for - wait for it, wait for it - veins. And that's not all followers! Blood backs up in MSers brains causing damage, but where's it supposed to go? The heart!
Without a thought veins are roto-rooted daily in heart patients. Why not MS patients? Sure the heart patients are about to die of heart attack or stroke. I get that. Fine. And all that happens to us MSers is we lose control over our bodies. We limp. We fall. We piss ourselves. And then we forget we did any of the aforementioned.
The list of what we go thru is neverending. At first no one can even tell there's anything wrong. Then comes the fatigue. "Well, she's always been lazy!" Little things come and go, but mostly come and stay. Stuff like numbness, shaky hands, loss of grip, lack of temperature regulation, hyper reflexes, spasticity, leg jerking, slurring speech, headaches - all minor stuff, I feel horrible even mentioning. Then we graduate to wearing diapers, using assistive devices and putting off bathing for as long as we can stand our own stinch. Eventually we become drooling bedridden vegetables, mere shells of our former selves.
And I haven't even touched on the emotional rollercoaster. I've missed out on so much of my boys' lifes already. And I miss out on even more as they get older and involved in more stuff. I get older too, and ummm, let's call it more involved in MS. My boys are only 6 and 9 and since this glimmer of hope I have realized one thing above all others - they haven't even met me! Not the real me. I think they'll really like me. I hope they get to meet me!
Anyways, I'm off the point again. Heart patients vs. MS patients! What's the difference? Heart peeps could die and MS peeps, well, they're just sentenced to a horrific road to death. They say MS don't kill ya, welllllll, let's explore that a tic. Aside from suicide, (which just so happens to be a prominent cause od death among MSers), what exactly do we die of? Pay attention. There may be a test later.
Auto accidents? Was the MSer driving? Injuries due to a fall? Yeh, it happens. And what of my fave MSer, Richard Pryor? I'll give you one guess. His obit read: "Pryor passed away December 10, 2005 finally succumbing to his long bout (diagnosed in '86) with multiple sclerosis. He suffered a heart attack and died in a hospital in Los Angeles. He was 65." What's this? A heart related death? Investigate, you'll find more if you can get thru the suicides and accidents - the heart stuff will overwhelm ya.
It sure has me shaking in my Pumas. I'm doomed I tell ya. Doomed! I've got heart troubles in my mom's and dad's families. Lord, help me! So what was my point again? Ahhh, yes. I may have been barking up the wrong tree this whole time. An update then: tomorrow I see my GP and I promise to keep my gun at home. No? In the car? No? Well, at least in my purse . . .
I'll let you all know how it goes. Then my plan is to attempt to walk for a cure on Saturday. Did you check out my Facebook wall? I'm gonna try and be a hypeman for CCSVI and spread the word - not the dime. They got enough of my money already! Wanna join me? Then Sunday's church and RELAX, ALREADY GEEEESH!
I know I'm writing myself an awfully tall order to fill. What actually gets accomplished remains to be seen. Such is a life with MS. Anyways, next week's agenda, no matter what mystic Tyra has to say - I'm puttin' on my tin suit and goin' searchin' for a heart . . . . . . . doc!
Tuesday, April 13, 2010
Thanks so much for your interest. I've included a few of my favorite tid-bits on this phenomenal finding. There's just soooo much out there. Please let me know if I can help in any way, or possibly participate. Thanks again, Angela Spindler (MSer since 2000)
Tears of hope - Rebecca Cooney has secondary progressive MS. She is losing the use of her legs and worries that within a year she will be in a wheelchair. "I was with my family," Cooney recalled of first hearing news about the surgery. "I started to cry because I felt it was finally something tangible that can be fixed."
Even if the angioplasty doesn't reverse anything, Cooney's hopeful her decline could stop. So far she's spent $4,000 for tests in the U.S. that showed two severely narrowed internal jugular veins. Her objective is to promote research and testing. She laments the lack of standard protocols and tests to diagnose CCSVI.
"Anybody that has MS is perfectly happy to be led down the garden path just for a chance at maybe having a shot at this," said Matthew Katz, a wheelchair MSer. Experts with International Union of Phlebology, which investigates and manages vein disorders, agreed CCSVI is a condition that should be taken care of.
Fellow MSer, Pierre Bouvrette said he can't wait for treatment. Bouvrette went to a private clinic in Katowice, Poland, and paid $10,000 for surgery to open up his neck veins. The fee included five days at a hotel. "It is not totally proven, there are some chances to take, but I am willing to take them," said Bouvrette. The Polish clinic is booked well into next year performing five operations a day.
CCSVI explained - Chronic cerebrospinal venous insufficiency is a chronic problem in which blood from the brain has difficulty returning to the heart. It is caused by a narrowing or "stenosis" in the veins that drain the brain.
Small studies on people with MS suggest the blockages lead to different patterns of blood flow back to the heart. Blood leaves the central nervous system differently than normal. For example, it may flow more slowly, leading to swelling, or may move backwards or "reflux" into the brain causing lesions.
Dr. Robert Zivadinov of the neuroimaging analysis centre in Buffalo, N.Y. is trying to confirm the link between blocked veins and MS. In Nov. 2009 he said being born with narrow veins in the neck or thorax, along with environmental and genetic factors such as vitamin D deficiency or exposure to the Epstein Barr virus, may play a role in causing MS.
Different tests are used to diagnose CCSVI. Doppler ultrasound of the neck and skull may show if blood is refluxing. Venography, which involves injecting a dye into the veins to watch blood flow and possible stenosis in the azygous vein in the chest and the two internal jugular veins, is also used. Researchers are still investigating the best protocols and tests to use. People doing the tests need to be trained to do it effectively.
Treating the condition is more controversial. Zamboni's angioplasty procedure involves a small incision in the groin to insert a catheter into the blocked vein that is opened with a small balloon. In his study, all 65 patients who had the procedure had fewer MS attacks and brain lesions.
Most recently, 08Apr2010 Kuwait: Leading The Way For CCSVI
Hearts of millions of MS sufferers sang when it was announced that the Kuwait Ministry of Health decided to treat all 6,000 of their people suffering from MS with the Liberation Treatment. Dr. Tariq Sinan, an Interventional Radiologist, was instrumental in urging the Health Minister to make that decision. "We have performed the procedure on 12 patients and they all showed improvment. Two can now walk without crutches and are able to drive again," Sinan says. As for procedures, the Kuwaitis will be starting right away. "We will start next week and we will be treating 10 patients a week," Sinan says.
A timeline of vascular findings in MS
1863 Dr. E. Rindfleisch noticed in all autopsy specimens of MS brains a vein engorged with blood was at the centre of each lesion.
1937 Dr. T. J. Putnam researched lesions noting thrombosis of small veins could be the underlying mechanism of plaque formation - evidence of vascular occlusion in MS.
1942 Dr. Robert Dow and Dr. George Berglund continue research finding many venous connections to MS lesions [Arch Neurol Psychiatry. 1942;47(1):1-18]
1950 Dr. Zimmerman and Dr. Netsky note lesions are indeed venous in nature, but not caused by small thrombosis as Putnam surmised.
1965 Dr. Torben Fog noted MS lesions predominantly around small veins. 51 plaques from two cases of MS followed the venous system course. The topography of plaques in MS, with special reference to cerebral plaques. [Acta Neurol Scand, 41,Suppl. 15:1, 1965]
1980s F. Alfons Schelling, M.D. in the main venous passageways through the skulls in victims of MS he observed venous involvement in cerebral lesions of multiple sclerosis.
His book outlines the history of the connection of MS to the venous system.
2009 story breaks (please view link): http://www.ctv.ca/servlet/ArticleNews/story/CTVNews/20091120/W5_liberation_091121/20091121?s_name=W5
2010 internet community goes crazy with information!!! we're everywhere. facebook, youtube, blogger, google, etc. (please view link): http://www.youtube.com/watch?v=TP7NyN_9g2U&feature=channel
I hope I haven't overwhelmed you. Thanks again, Angela
Monday, April 12, 2010
So I can only imagine what first swam through her mind. The automatic .22 would be fine at close range. No? Then the 9mm perhaps - a more impressive looking gun for sure. But the .357, mmmmmm, ahhhhhhhh yes! The .357 would make a real impression - a lasting one - one even a cleaning crew couldn't mask. A .357 would call for a construction crew.
I allow a few seconds of this cold silence for all worthy considerations to be pondered and then I snap back to reality. Sandra Bullock's character in 'The Blindside' threatened she was a Republican and an ever-packing member of the NRA. He! He! Me too! But this blog is about my right to angioplasty - not my right to bear arms - I'll save that for a later post. Jeff, you still got that picture? I'm in the mood to make that my profile pic and retire the one of Gooch.
OK, where was I? Oh yeh. I gave Mom a sec to think things over and then I explained I wanted to go in there tomorrow with just enough of the right research to intrigue and not scare him off of helping me. Any one who knows my doc (rhymes with Bee, but starts with L) you know I only have one minute at best to present my case.
To all my nurse friends, or fellow sickies out there, or anybody still reading . . . what should I throw at him? Besides tomatoes, cause I haven't even give him a chance to help yet. My ultimate goal is to get a referral to an Interventional Radiologist. MSers are advising to try going local before boarding the plane for overseas.
Prepayment of services (starting at $10,000) are required most places. Then there is traveling and lodging expenses. Language barriers. And some places have up to 2 year waiting lists. Not to mention some foreign countries frown on people packing! Ha! I made a funny!
Anyways, while I wait on lists - no harm in giving local guys a legitimate try - if nothing else it'll help pass time and spread the word. So please people, holla at me! What should I show him? A video? A power point? A flyer of facts? My gun?
Seriously though, while I got ya, I gotta say just a bit about spreading the word. Jason spent a good chunk of his evening late last week writing to each of our local media. He also forwarded them a link to Canada's big newscast on CCSVI and Liberation. Guess what?
We've heard nothing back from no one. Nada! Zilch! This is a horrific travesty. What of the MSers that aren't on Facebook? The internet? This my friends, sickens me!!! On the 14th of this month the National MS Society is said to be holding a live web conference on their thoughts on this whole thing. Fine, great.
If the U.S. media (ours especially) doesn't come out about this soon thereafter - I'm thinking protest maybe. We'll go braless, make signs, the whole nine yards. Maybe they'll cover that . . .
Saturday, April 10, 2010
MSer Wendy Sturek Shares Her Success ~Post LiberationThirty-six year old Wendy Sturek was a self-described 'closet MSer until she returned to Canada after her Liberation Treatment in Poland. Now that she's back, she's trying to do everything she can to get the word out about how the treatment has changed her life and how she's sure it can change others.
"As soon as I woke up the morning after the treatment, I knew my body was different," she said. "I didn't hurt in my eyes. I was clear right away. I felt really present and alive. There was a mental fog hanging over me before and I felt that cognitively I wasn't able to be present - I felt I was a prisoner of my mind and unable to communicate. It had crept up over the past year, year and a half, and I can remember feeling anxiety over it. I couldn't express myself. I felt it was easier not to say anything, just keep quiet and withdraw, so that's what I did. I had no idea the operation would change that!" she explained, now sharp as a tack.
"Now I'm doing interviews. I'm talking to people I've never met before and sharing my life -past, present, and future," she says. "This is how I'm supposed to be - how I'm supposed to communicate. I'm not holding anything back. I feel I'm found again. I don't know where I've been or how long I was there, but I'm back!" Wendy got back to Calgary this past week and has hit the ground runnning. She went to a meeting of CCSVI Calgary on Monday where she emotionally explained what her life was like before the treatment, and what it's like now. And within 12 hours, the phone was ringing for interview requests. She's been filmed by CBC TV, CTV TV, Global TV and interviewed by the Calgary Sun and CBC Radio. "I would never have had the energy to do this two months ago," Wendy added.
Wendy's operation was February 25th at Dr. Marian Simka's practice in Poland. Like thousands of other Canadians with MS, she'd seen the CTV W5 program, but unlike many others, she'd only seen it on the Internet. A chance posting on Facebook took her to the video, which she watched over and over again, jotting down the names and places of all the people who appeared on the program. With the help of a friend she tracked down Dr. Simka on December 1st to schedule an appointment. The closest she got to a date was "sometime in the new year." Just after Christmas she left to stay with a friend in Dublin, Ireland to await the confirmation date. "Dublin is closer to Poland than Calgary," she explained, "So I went. And I waited."
Officially diagnosed nine years ago, she'd had symptoms starting when she at 21. Her first attack hit the right-hand side of her body making it numb. She also lost bladder control but was diagnosed as a pinched nerve. She was given anti-inflamatories for two weeks and the symptoms disappeared as quickly as they came. "Bam, they were gone, just like that," she recalls. "I'd thought it was a pinched nerve until a few years later when I really had a pinched nerve. What I had then wasn't the same."
A few more years went by symptom free until one night out partying with friends and admittedly having too much to drink, she explains, "When I got up the next morning, I couldn't get out of bed to go to the bathroom. I couldn't move my right side." Then a trip to the emergency room in Camrose followed. The doctor there agreed it was bizaare and that it could be a reaction to the amount she'd drunk or it could be Multiple Sclerosis. Those words sent chills through Wendy's body. She had an aunt diagnosed with MS at 29 and by the time she was 30, she was in a wheelchair where she had remained for the past 24 years. Wendy was worried that if she had MS, she'd end up just like her aunt.
Instead of going to a neurologist, she decided to wait it out, and like the first episode, after about two weeks, symptoms left as quickly as they arrived. During that two week period, however, new symptoms including extreme foot drop, a weak right arm and loss of co-ordination came and stayed. So with symptoms piling up, she had the feeling deep down that MS was being written all over her. She knew she was lying to herself about it, but she refused to hear the truth. "I didn't want to be seen as a sick girl. I didn't want pity. I wanted to be normal."
So Wendy traded in the Canadian Club life and began training for biathalons, swimming, running and changed her eating habits. A couple of years later, her speech went slurry.
"It was at lunchtime," she recalls, "chatting in the kitchen to a friend of mine, goofing around I had tried to say something and it didn't come out the way I wanted. I sounded like a deaf person trying to talk." This time, Wendy went to her GP. She was very nervous. She remembers her saying, "Wendy, this is beyond my scope. You really need to see a neurologist." So an appointment was made.
Speech problems had disappeared by the time her neurologist appointment was made but once there he gave her all the tests- physical, eye tests, walking a straight line, and finally an MRI. "It's definitely MS," he said. There were definite lesions in her brain and spinal cord. He diagnosed her as having relapsing remitting MS and explained there would be a time where it would probably shift to a more aggressive form of the disease.
Wendy remembers her eyes filling with tears. She was advised to consider drugs. "It's great that you're young but the closer you get to 40 the faster you'll go downhill," the doctor explained.
Wendy was 28 at the time and in such shock that it was actually happpening - that it was actually real. All she could think about was her aunt. She told the doctor she would go home and think about it. At home she read books and did various research. "MS just looked so bleak, so hopeless. It just looked like a pile of victims. Everybody who had MS was feeling so bad. I didn't want to be like that," she said, and she still doesn't want to be 'that person'.
So she looked at other avenues about what people were doing holistically thinking that was the route that made the most sense. She changed her diet, had all her mercury amalgams out and she explained, "I basically shut up about it. I didn't tell my family. I didn't tell my closest friends. I didn't want to be looked at as being the sick girl. I was the healthy, fit young woman. I'd been a smoker and a drinker, so I changed my lifestyle to be healthy and fit and I didn't want people to look at me any other way. I wanted to beat it, and I wanted to beat it my way. I vowed to myself that when you look at me, you were never going to see sickness."
But things changed and she started to see sickness, and others might have been able to see it too. "I think a lot of people think you don't have MS unless you're in a wheelchair," Wendy explained, "I've even had MS people say that to me, but the thing is you can be crippled without being in a wheelchair."
She became fatigued and would wake up not feeling well. Her cognitive skills were deteriorating. "I felt like my brain had left the building. And it started to happen more and more. And then came the pain. I had no idea MS could be so painful. I started taking drugs. I'd take more and more Advil to get through the hour, and then it was stronger stuff and then herbal muscle relaxants," she explained.
"When my vision started to go, I felt a lot of head pressure and pain. I thought it was probably time for me to go and get glasses. I went to an optomotrist, who referred me to an opthomologist to find I had glaucoma." Wendy then found herself on a path to a head-on collision. She tried unsuccessfully to control her pain, found herself unable to sleep, started drinking alcohol to get to sleep and one day woke to find her life out of control.
"All of I sudden, I'm looking like that girl that I didn't want to be. I felt like a hypocrite, I was embarassed," Wendy admitted. In November 2009, Wendy went to her GP for fatigue and pain, and she suggested Wendy go to the MS clinic and talk to them. "It was a week later," Wendy explains, "and I was still thinking about going when I found the link to W5. It was like the grace of God. There was this divine intervention. I saw hope and never thought about the MS clinic after that."
At the Euromedic Poland clinic, they found some mild crimping in her left jugular. "The doctor said that the crimping was not severe, and I could wait and come back when it got worse but I told him I didn't want it to get worse. I said I wanted to prevent that from happening. And so he did it," she explained. The test, proper diagnosis, and corrective procedure took only 45 minutes from start to finish.
In addition to her ability to think clearer, Wendy has had many other improvements - some from problems she didn't even attribute to her MS. She no longer has pain in her eyes and has regained peripheral vision. She started running again two weeks after the operation, and found she still had drop foot, but not as severe. Just two runs later, she found her drop foot had disappeared and hasn't returned since.
"Eye and hand coordination," she explained, "I have that back and I never even considered those symptoms of MS. And it's been gone such a long time." Sure these may seem like little things, but to MSers they are everything. And they add up. Wendy also noticed her sense of smell. She said, "It's been such a long time since I could smell anything other than baked bread and wet dog. Waking up and being able to smell my own BO?! -it's amazing."
"My bladder still isn't great and I still need to be aware of where a bathroom is," she admitted, "but my fatigue is nearly gone. I don't nap in the afternoon and I'm not drinking copious amounts of coffee or caffiene to keep me awake. I feel awake when I get up in the morning."
"My body isn't in pain all over the place," she continued. As for drugs, since her operation she's taken painkillers only once, and that was for menstrual cramps. Another thing she's found is that she doesn't choke anymore. "I haven't choked since the surgery," she said. Choking had become a regular occurance, so much so that Wendy worried in the back of her mind that she might choke to death. Now even that anxiety is only a memory.
With all these improvements, Wendy feels an urgency to tell others about how this operation has changed her life. She explained, "I feel passionate that we get this here in Canada. I'm getting people emailing me all the time, so desperate and scared. Not everybody's going to be as lucky as me in finding the right people to get help from. The more I talk to people, the more I want to help."
"I want to bring this home. It's just not fair. People with MS have been blindsided and belittled and treated like 'oh, just take your pills, this is the best we can do'. But there's more that can be done, and I'm living proof."
Friday, April 9, 2010
Rocky Balboa. Ever heard of him? He always won his fights by allowing his opponents to tire out before truly fighting back. And he always prayed too! Notice that?
So, looky here! I decide to fight and later that very night a research place decides to get back with me! Yea! So I write them back:
Thursday, April 8, 2010
Then alone with Gooch and Dell the research began again. Off fast, only to come screeching to a halt. "Whoooooooaaaaaaa," screamed my inner voice. Not one from me or Amelia, but a deep, meaningful one like from my Grandpa. A "Whoa!" that would make every horse on the place stop in his tracks. Dr. Sclafani had been shut down. Stopped. 135 scheduled patients, not cancelled, they explained, just shuffled. Postponed? Forever possibly? I sat in disbelief awhile. Checked around a couple places to confirm. Yep. The powers that be shut him down declaring what he was doing research, blah, blah, blah. And research can't be done on humans without blah, blah, blah.
Research hell! I won't bore you with the details. But c'mon if veins are blocked and causing trouble shouldn't they be cleared out? MS or no MS? Does this mean if I have a heart attack (which runs in my family by the way) I won't be treated as a regular heart patient would because I have MS? Screw you MS and your little dog too!
Alright, back to the story . . . so no more Sclafani. I was really on his list this time. I wanted to go to bed and cry. I didn't have the energy to make it upstairs. I prayed for energy. Not to go cry in the comfort of my own bed, but I wanted to be able to take my baby to see a doc. I wanted to be there for him and I needed to hear some good news today.
"What? Really, Doc? A break? Ouch!" I felt just horrible. Jason did too. And I'm positive Abel did. Heck, he'd even been in pain. Poor fish! As weak as I'd become throughout the weekends festivities, I'm glad I forced myself along for this. My poor baby. And that huge scary X-ray machine. He sat so big and strong on the exam table but I could tell he wanted on my lap. And it's for damn sure I wanted him there too. So back home and guess where I went? Yep. You got it, first guess - bed.
So Tuesday morning we were off early to see an ortho doc. And, boy, am I glad I came along for this one. This lady squeezes along his arm until she finds the break. What are X-rays for? Abel cried out and lept maybe 10 ft. from the doc's grasp to my lap, tears flying. Waling in pain. Lucky his mom's crippled lady, 'cause if she hadn't been, mmm, mmm, mmm. I wanted at that very moment to cause that woman PAIN! Maybe I was over reacting. Maybe I was being over-protective. The only fights I got in at school were ones where some poor unfortunate souls (yeh, they both were guys) called my baby sister fat. Shame on 'em and shame on this doctor! And, o.k. fine, shame on me too. I may have been looking for someone to take my frustration out on.
Tuesday night, thankfully uneventful. Wednesday morning homework was rough but Asa made the bus and all was going well. I had made my mind up to call about my test results even with Sclafani's shut down. Maybe, just maybe, if blockages had shown up really well I could find a vascular doc of my own to do some plumbing work. So we've talked about the wall and the break . . . LOOKOUT, now comes the fall! Shifting to dodge Gooch's retreat from those ferocious balloons, I fell, H ~ A ~ R ~ D !
First, I clobbered poor, unsuspecting Dell. Slam! He was closed, lickedy split, and came crashing to the floor before me. Then the outside of my right leg caught the arm of the couch. Somehow or the other I twisted myself mid fall trying to align the ole butt with the ole couch to stop this trip before it really got going. Again, I failed. The underneath of my upper right arm then smacks the sharp end of the huge table we have in front of the couch. I come to rest between the aforementioned table and couch just barely enough room between the two for my plus sized model self to fit. I lie there just long enough to recognize a new pain in my side. What could that be? A Wii remote, gamers! I had landed on a Wii remote.
Abel bless his soul, ran for the phone and wanted to call Daddy. I assured him I was o.k. trying to keep my moans and groans to a minumum as I struggled up. I yelled at the dog to get in his cage and Abel said, "but Mom, Goochie didn't touch ya!" I replied to my brilliant little man, "Well, I can't put my MS in the cage so Gooch will have to do." He's told the terrible tale to several now - each time blaming Gooch for the fall.
A short drive to take Abe to school, I sure didn't feel like making it so when Granny and Papa called to offer. Yes! Absolutely! That'd be great! And they brought us lunch too. Thank you. Thank you. Thank you. And that's not all, they stuck around and straightened the house. I made the trek upstairs to nap, I couldn't risk another fall - not with witnessess. They'd have hauled me off to a doc for sure. God bless 'em, they already wanted me to go for X-rays. Anyways, I've said it before, but it is too hard on me to watch someone work. Jason says, "Get over it!" I know. I'm trying. But today I'm trying and I'm hurting so I think I'll go to sleep.
And sleep I did. At 10 'til 3 my alarm woke me and I was sore, man was I sore, but I made my way downstairs to see my boys off the bus. Papa and Granny stayed awhile to see how the boys' day had been. Then we hit the Wii hard 'til Daddy made it home. And he came bearing gifts. Well, more like mail, really. To add insult to injury my MRI and MRV results had come in the mail. Huh? There was a note on one of the photocopied print outs that read: Tell patient nothing out of the ordinary.
So ya think maybe that would have meant the patient was to have been called? Nah. Surely not. Let's photocopied all this medical jargon she won't understand and just mail it to her. Muah, ha ha ha! Whatever! Some of the medical talk I can actually understand thanks to 10+ yrs. of having this crappy disease. Some I understand from common sense. Like the fact nothing in my neck was tested as I had asked it to be, duh! And guess what? There's this nifty new thing called the internet. Ever heard of it? It's got this thing where you can type in stuff and hit enter. And then, here comes the good part, you can get stuff that tells you about the stuff. Wow! Right?
Fine so nothing. MS is confirmed. There are lesions. An active one about 1 cm long on the upper right quadrant, bla bla bla. No signifigant nothing on the veins near the top of the head. Duh. Hello, McFly! The blockages have all been in the neck and upper chest. My God, I can't believe people are trusting such idiots with their lifes. I become so incredibly over all of this at that point. Shut down the good guys and stay stupid cashing your monthly checks from big pharma. I will stay disabled. Thanks! And Buh-bye!
Then of all things Jason gives me a kiss and a hug and says go on to bed early (like I wasn't going to anyway, right?) and reminds me everything happens for a reason. Great! Trudging up the stairs I think to myself, yeh, a lady's life was saved yesterday because I have MS and didn't have the strength to kill her with my bare hands for hurting my baby. OK, seriously, I do believe things happen for a reason . . .
I know. I know. Get an Orth mad and tell them they can't do something. Or can't have something. Then just sit back and watch. They'll do it. They'll have it. I'm getting it now. I may have to fight for this thing. Maybe being on some list just wasn't enough. Then as the fire began to burn again, albeit slowly, I watched one of my all time favorite show's in the whole wide world - America's Next Top Model.
My top two girls are in the bottom. And the mortician turned wannabe model who's let go this episode proclaims she wants what she wants now and she may have to take another road to get there but she'll get there. For a ditsy blond model, wellllll, nicely put I must say. I couldn't have said it any better myself. And the message, whether divinely intended for me or not, was received loud and clear. Couldn't you hear it? It said, "Fight!"
No answer. Oh well. He must be workin' or somethin' - imagine that. Good Friday was to be a day off. That, I do remember. Jason and the boys were off and the weather was gorgeous. He had intended to go fishing. Ahhh, yes. It's coming back to me now. We all got lunch and went out to Aunt Ann's. Then we left the kiddos with Granny and Papa to go Easter shopping. No super cool swing sets tough enough to accomodate our big man or cool enough to accomodate our monkey man - well, none under $5,ooo anyways! Guess we'll be building our own.
So we returned home to work in the yard. Grass seed purchased last week had to go in the ground to work properly. Duh! So sticks needed picked up before airating could commence and though I'd have loved to play pick up sticks it seemed a perfect game for the boys. We went to retrieve them hoping to rope in Ma and Pa Spindler in the mean time. I don't know what we'd ever do without them! We love you guys!
The women stayed in and the men went out. Anyone realize how hard it is to watch people work? Watch others do what you should already have done. You may be thinking, "Wow, wouldn't that be nice. What's she bitchin' about now?" I know, right?
Ever met my folks? I'm a worker. Bred a worker. Born a worker. Raised a worker. I admit I used to fake sleep to get out of unloading the horses after a long days show. And fine, I used to flirt a little during 4-H week at the fair to get the guys to clean my stalls or water my horse. But guess what? Bottom line. My Daddy didn't raise no sissy. If something needed done. It needed done right and right now! And me and Amelia? We could do it. All of it! And my Momma made sure us girls were right out there alongside any boys. We could lug the 5 gallon buckets of water. We could shovel the saw dust. We pulled weeds, mowed, hauled whatever, wherever. Grrrrrrrr. I miss those days.
So I try and do a little. Fold a few clothes and get a trash bag started at least. Pretty minor, right? WRONG! I'll spare you the details but it got up to 76 degrees in the house and I soon required cold wash clothes, ice, and some time on the floor next to the now cranked air conditioner vent. MS SUCKS! It was a loooooong trip upstairs. No blankets that night.
Prayers again were answered as I slept well and felt better Saturday morning. We got the boys from Granny and Papa's and were off to church for the Easter Egg Hunt. Asa didn't really want to be there thinking he's too old for all this, but I knew he'd be jealous of Abel's loot. Anyways, all went well, I think, and we followed the festivities with lunch and egg decorating at my Mom's.
Next up was Granny and Papa's for Easter goodies. Yikes! We still didn't have them anything for Easter so off to E-ville we went again. Oh, how I miss K-Mart.
So we should've stopped at Saturday. Plenty Easter already, right? Fast forward to Sunday. Up before 5 and the Easter Bunny had been here. He'd left an egg in the boys toothbrush holder. In the egg was a clue as to where the next egg was. It said it was cold. They rushed down to find it in the fridge. Then back up to a sock drawer. Then to the basement and back again and so forth and so on til they made it to their final prize of HEX bugs. Whew! They had a blast. Wish I could've gone with them but alas I enjoyed it plenty from the couch.
With time to spare before Sunrise Service we took our time getting ready. At exactly 6:32 we arrived to the parking lot of Point Township Church of the Nazarene. Still early (Pt. Township time) for the 6:30 service. WHOOPS! It had started at 6:00. Have I said, "MS SUCKS!"? Well, it does. I was so embarrassed. And sorry, Jason. Anyways, breakfast was wonderful. All food there always is. Next was combined Morning Worship and I was early for that one! Good thing too 'cause it was packed!
So many had asked how my tests had gone on Saturday and Sunday. Though greatful for their concern I found myself starting to sound as if I was reading my reply from a cue card. "Oh, I'm waiting 'til next week - wanting to focus on the holiday, etc. etc. blah, blah, blah . . ." The whole time I was chomping at the bit. Eager for action. Well I paid for these untruths tenfold. True I was waiting. True I was wanting to focus on the holiday. But, I wasn't successful. These tests - this unknown, next step - they were consuming me.
It was hot at Grandma's. A breeze blew through the windows, but with everyone there I couldn't get my breath. I tried going outside. The sun was too much. It's hard for people to understand, but heat is more than just uncomfortable to me. I'm not just bitching to hear my voice 'cause it actually becomes hard for me to form words in my head let alone actually string them together and put them out there to be heard and deciphered by others. It's also at this heated moment that cursing becomes more prevalent. For this I am sorry! The food, I struggled to enjoy because swallowing was hard. The conversation, I struggled to enjoy because I opted for the listening side of it instead of my usual arguing side of it. Pity!
Then came the hunt. Abe "Monkey Boy" Spindler decides to climb a tree to go after an Easter Egg. An egg in the tippy top of a tree? I know, right? Thanks, Andrew! So he falls and Aunt Becky rescues him. And his worthless, sick Mama tells him to get over it. He'd be o.k.! Finally homeward bound - things had to get better. Right? Pray with me they get better!
Or worse?! Jason checks e-mail as he always does when arriving home - only to discover I'm not on Sclafini's list after all. Holly never got my application info. Crap! Jason calmy re-sends it and asks for confirmation of its arrival. Fine. Dandy. What's up with Holly working late Easter night? Hmmmm, a MStery to be solved later. I retire early. Nothing new here. Supper, some Tylenol and an Ace bandage later the guys joined me in Sleepytown.
Horrible night of hallucinations. I won't freak you out with details here, but I will say they are not fun and I can't believe people out there purposely take drugs to make these happen. Frightening, really! (pause for clarity) Now back to the routine. Monday morning. School. Did anyone have homework?
Well, I'm glad you asked. My fave models were in the bottom two. The so-called plus size girl (a fave for obvious reasons, though I'm still probably twice her size) and the mortician, embalmer girl (a fave 'cause, well, though morbid I realize, I've always found myself fascinated with the unknown, let's call it). Still reading?
So the mortician girl bites it (pun intended!) and during her exit interview she admits she has fallen for this new life. Although she didn't win the Top Model title she had a brief taste of it and at this time has no intention of returning to the morgue. So am I becoming a model? A bit of Angela trivia - I did go to modeling school. I even graduated! So there, suckas!
I am equating my life before hearing about the cure to her's as a happy, stunningly gorgeous mortician. So she goes in this modeling competition tasting a new life. I go on a magical carpet ride of research, tasting a new life of my own - free of MS! She gets cut from the show and I hit a wall. (next post to be titled, 'The Wall, the Break, and the Fall")
Loving her new life she decided right away to pursue it however she could. You don't have to win the show to become a successful model. Fine. Great. You go, Girl! As for me, I hadn't actually got to experience 4+ weeks of the luxurious model life. Ha! But seriously, I hadn't got to feel for myself even an hour of MS free life. Oh, what I'd give for even a minute sometimes!
It's hard to remember what I'd felt like before. All I have are fuzzy memories and the occassional success story of another to go on. Exhausted from even researching, it took me awhile to come around. But I'm around now. And I'm praying for strength and energy to stay on this treacherous road to my new life. I'm coming back, I tell ya. All the way to Poland if I have to . . .
Thursday, April 1, 2010
I had expected a loving response of: maybe, we should take that to the doc. Or even a: where'd you come up with that? But what I got in return far surpassed all my expectations. Not even pausing in his fast methodical prep of my shot, he replied, "Do I look like Dr. Zucchini to you?" Silence. Upon completing the task he had been at, syringe and alcohol swab in uplifted hands, our eyes meet. And laughter ensues.
The good doctor from New York that is answering questions on the THISISMS forum is named Sclafani. I and some other bloggers call him Fini, and some Dr. S, but Zucchini? Only my husband. Classic! So Dr. Zamboni from Italy, a vascular surgeon, cures his wife's MS. And Dr. Sclafani from Brooklyn, a radiologist, is the only known doc from the states taking patients. (I'm on his list by the way!)
So Zamboni + Sclafani = Zucchini! Whether he flubbed or was being witty, we'll never truly know. But it was laughter I'd needed and thru Jason - God gave me what I'd needed most. Now as to whether or not I may be getting involved with some old time mob like activities is still unknown. I love the Godfather movies, Casino, all mob movie off shoots and predecessors so bring it on, sure, I'll do you this favor . . .
So Thursday morning gets here and I realize as I remind Asa there's no school tomorrow, the doc's office will likely be closed too. And St. Mary's Center for Advanced Medicine? I dunno. Maybe I should call them today. Or make up my own mind to wait thru Easter til Monday. Why should I be upset during Easter? It's a time to rejoice no matter our earthly circumstances! So I'm leaning towards waiting. No news is good news as they say.
Funny story: Remember the decapitated Webkinz I spoke of earlier. Well since Gooch's arrival I have warned the boys repeatedly, if you leave it on the floor - it's property of The Gooch. We'd been lucky so far aside from some trash, a few socks and well, finally he got the stuffed green lizard Webkinz he'd been eyeing.
This morning rounding the corner from the steps towards the living room I spotted Dell helplessly sprawled upon the living room floor. He was still attached to his charger; it's cord in a series of elegant yet delicate twists and turns. I panicked. This time my very own voice played in my head, "If it's on the floor, you've give it to Gooch!" Then my inner dialog took over. "NOOOOOOOO!" she screamed, as I dove to rescue Dell.
As I dove in slow motion thru the air I had time to reason, or rather pinpoint who was to blame for this what was to surely be a catastrophe. I had departed for bed early leaving the men folk on their own. It had to have been one of the boys, neh, Jason! When he came to bed last night he told me he had just read my blog. Ah, ha! He unknowingly had told on himself. Admitting to the crime in question. Case closed!
Thankfully, however, there'd be no need for trial, conviction or sentencing. Thank God and Gooch - Dell was unharmed. He hadn't been properly shut down (but what do I know, I'm not a computer guy) or tucked in for the night, but he was OK. Anyway, I thought that was worth telling and telling it would buy me more time not having to make a decision on whether or not to start calling and bugging people about my results.
What's this? Grandma just called. Grandpa has an appt. he needs directions to. And why would I, who never hardly drives anywhere anymore, know where this doc is at? 'Cause he's my neuro?! Huh? So, that answers the is he open on Good Friday question. Apparently so!
Hmmmm. What to do? What to do? Any thoughts? Anyone still reading?