CCSVI Journey: November 2010

Friday, November 19, 2010

Appeal

November 19, 2010

Welborn Health Plans Attn: WHP Appeals Committee 101 S.E. Third Street Evansville, Indiana 47708

Wednesday morning. Test to take. Doc to meet. But first things first. Put on some clothes. Brush your teeth. Splurge and brush your hair too. Geesh! Eager much? Ha! Eager was an understatement. Four trips to the potty later I was ready to go. Nervous much? Uhhhh, yeh!

Although we'd planned on raiding the free hot breakfast offering at the hotel we found ourselves short on time an opted for a Mickey D's drive-thru instead. I should clarify it was Jason that did the opting, whereas I partook of nothing but a nibble of hash brown and a forced slug or two of Coke.

In my aforementioned precarious condition I would have passed on even that had I not needed to take my morning med and be adequately hydrated for my approaching test. Nerves wrestling nerves I prayed for composure - of stomach and of self. Amen.

CCSVI Atlanta was awesome. We had arrived a bit too early. So much so that the door to the suite was still locked. Eager, remember? Back to the lobby. This MS riddled body needed a place to sit. 15 -20 minutes later the building began to fill. Everyone very friendly. "Hi." "Good morning." "How are you?"

So far so good. And then we met Finesse. Sweet, gorgeous girl. She asks, "You guys here for CCSVI Atlanta?" Why, yes. Yes we are. She introduces herself and says she's on her way up there now. She hoped we hadn't been there long. Even if we had it was still well before opening time. Our bad. Silly out of towners.

Jason told her we'd give her time to get settled in before we came up. A couple more smiling, polite people thru and we got another kind soul involved with CCSVI Atlanta, this one insisting we accompany her upstairs. She reasoned that the chairs in their waiting room were more comfy and they had magazines. Very sweet. And we were sold. Up, up, and away.

Once there, we were again greeted by Finesse. We had a very small questionnaire to fill out. A trip to the potty. The one just past the reception desk in the office vs. the one way down on the other end of the hall - thanks for that! And a tiny wait for the sonographer to arrive. I was to be her first for the day.

And what's this? She's nice too? Yep. Phenomenal experience I tell ya. The hardest part of the whole ordeal was walking down the hall and trying to stay still for nearly two hours. Free to go? Yeh. Cool. So off we went. Back to the hotel to rest up before meeting the doc.

What a joke. Rest? I was too excited to rest. Anxious much? And away we went. Time to kill we stopped for a sit down lunch. I was stoked as we'd been dining inside the truck for some time now. Lookout IHOP - we're comin' in. And it was delicious! I had a breakfast sampler. Eggs, ham, sausage, bacon, hash browns and pancakes. And I cleaned my plates ladies and gentlemen.

"On the road again . . ." Sing it Willie! And off we were to see the Wizard. I mean doctor. Of course I mean doctor. And what a quaint little area his office was located in. Just outside of Atlanta this place was like a cross between New Harmony and downtown Evansville but with more hustle and bustle.

Just past the hospital we took a left at a historic looking, yet very well maintained government building complete with columns out front. Down a couple of blocks of cute little window front shops and one more left before our destination.

Anyways, I was dropped at the curb with 30 minutes to spare and Jason headed for the nearby parking garage shared by local businesses and the adjacent medical center. And just so you know, yes, they validate parking. So they may have cost us $200, but they saved us $8 in parking fees. Whoopity doo, right? I'm not bitter.

Really I'm not. Disappointed, yes. But bitter, no. Everyone inside the doc's office was super nice. And that is a monumental feat considering they were having to be the bearers of crappy news. Ahhhh, yes - a silver lining. See it?

Has she gone mad? Nah. I'm just choosing to look at this as a learning experience for their office in case future patients' insurance fail them too. Perhaps having an appeal letter at the ready would help expedite such proceedings. Or maybe using alternate coding would be beneficial as many MSer friends have suggested.

Genuinely as taken back by all of this as I was, seemingly distraught even, everyone involved was willing to do whatever they could to help me out. One dove into steps needed to launch an appeal. Another looked into applying for medical credit. Even the doc admitted, "Your insurance has been the first to deny coverage."

I've always thrived on being a trend-setter. But, Lord please don't let this be a trend. Please, please, please this needs to me more widespread and acceptable. People are feeling better. Doing better. But You know that already as You're behind all that is good. And for that I am truly grateful. Amen.

So get to it already! What did I think of the doctor? And why didn't I go ahead and have 'er done? That is, afterall why you're reading, right? Get on with it then! I will. I will. But, maybe next installment as I have a few Christmas trees that need some attention. Priorities! I know.

Until next time . . . oxox

Decisions, Decisions

With money we had been saving up and with the overly generous offer of help from my mother we could have gone ahead and paid for the procedure right then and there. So now I have aggravated readers, right? Disappointed? Please let me explain why I made the decision I made. It sure was a tough one – maybe the toughest I'd ever made.

Shall I begin at the beginning? I was born May 13^th, 1976. Huh? Nooooooo? Not that beginning? The beginning of our Atlanta journey? Ahhhh, yes. I remember it well. We left out later than we'd planned Tuesday afternoon. It was nasty out. Sloppy, pooring. We had to deposit some money at the bank and go by CVS for some meds before leaving town.

So anyone who knows my husband knows then that during this little jaunt he had checked his phone about a bazillion times. Albeit a small time frame, you never know what might be waiting for you in a missed call or e-mail. He had checked it one too many times if you ask me. “I got a voicemail from the doctor's office,” he says. “Prolly about the insurance.” Silence. “You want me to call them back?” he asked.

And in my not so infinite wisdom, I eagerly reply, “Yes! Absolutely, yes!” Drum rolllll, please. Even only having heard one side of the following convo, I could tell it wasn't going my way. “Uh-huh.” “Yes.” “Well . . .” “Ummm.” “Really?” “Uh-huh.” “We'll let you know.” Short, sweet, and sobering. Pale faced, Jason turned to me and said, “They said no.”

We continued with our errands in silence. Then in the CVS parking lot, as the rain strengthened, Jason dialed our insurance company. Luckily (for parties on both ends of the phone) he received a very nice lady who at least seemed sincerely sympathetic to our situation. She even went so far as to suggest we launch an appeal of their decision.

As their convo ended I remember the rain pounding on the roof of the truck grow louder in the silence. It was in that moment that of all things I thought back to being in our gooseneck horsetrailer listening to the rain. It used to be a melodic, soothing noise to fall asleep with, BUT as it grew louder and closer to morning it had always been unsettling to wake up to.

None of us ever wanted to have to show in the mud. Even in the indoor arenas it was never any fun trying to get ready in the rain. Funny where your mind takes you some times. Anyways, I snap back to reality to find my husband staring at my blank,distant face with tears welling in his eyes. I don't speak. I don't wanna make anything worse.

Then when he's just about to get a full blown cry on, in hopes of lightening the mood, I interject, “Well, Honey, let's just get some lunch and get you back to work.” Again with my infinite wisdom, right? Honestly, I had thought that would get his mind off of this and somehow make things better. “Ya think long. Ya think wrong,” my Dad used to say.

“Abel's not feelin' well,” I went on pleading my case to stay home. “It's prolly best we just stay home.” This brought with it less crying but more tears - if that makes any sense. Then, gripping the steering wheel, he said, “I shouldn't have listened to you. We should be on our way by now.” Pause. Silence. “We should still have the test done. We should at least talk to the doctor.”

What seemed like eons passed. Later, I agreed. Not because I really DID agree, but because my not going seemed to be breaking my Baby's heart. I needed to back track. And back track fast. Perhaps moonwalking would be in order. Smooooooth Criminal,right? What to say? What to say?

I reasoned, we were packed. All of our boys had been left in capable hands. What would our going on a little mini vacation hurt? So finally, I say, “What the Hell, Baby, let's just go! You deserve some time off work.” Skeptical about how or why I'd come to that I was met with a shrug of the shoulders and a shake of the head.

Sure, I had made a 180. My Baby had dried his face and was putting the truck in gear. A 180 well worth it. Now my eyes began to tear. Had I just made the first of a long line of wrong decisions for the week? Geesh! Hormonal much? Sure would have been a waaaay funner road trip had we not received that little nugget of information.

Next decision to make was when to call our parents and break the bad news to them. Or should we call them at all? Best not to. Why pull loved ones in to the bog in which you are trapped and sinking? Nice responsible adult decision, right? Wrong! I wanted my Mommy! *sniff, sniff* I am such a baby. Whatever! Sticks and stones may break my bones, but words'll never hurt me!

I called my Momma. Unshaken, she responds, “No biggie, right? Didn't you expect them to turn you down?” Hmmmm. Uh-huh. I guess so. Expect, yes. But I had hoped they wouldn't. OK then. Mom put it all into perspective for me again. Paraphrasing of course: Suck it up buttercup! We knew this would happen. Go down there and if he's the 'right' doc . . . get 'er done!

Can I get an “Amen?” How's about a “YAY, Mom!” A sidenote: I love my Momma soooo much. I honestly don't know what in the world I would do without her. Please, please, please if you still have your Momma with you today give her a big hug and tell her how much you love and appreciate her!

Alas, maybe it wasn't bad news. A game changer, sure. But at least the game wasn't over. Quite the contrary, it was actually just beginning. The next seven or so hours there we discussed what we planned to do. First order of business, we were gonna get the ultrasound at CCSVI Atlanta. Period.

No insurance involvement whatsoever with this. We knew this going in. They'd help us file with insurance but would not wait for insurance reimbursement. Fine. $550. Paid. Once and for all we needed to know if I did indeed have this vascular disease. Please God, I really wanna have this disease. But it's His will, not mine. Remember the sermon, Angela. Got it. But I can still want it, right?

Now we would also pay an extra $200 just to talk to the doc. The consult was to be free, but due to insurance denial of procedure we were advised our first appointment would run $200. A bit aggravated, but whatever. It would be nice to talk to a doctor that actually understood CCSVI. As many nay-sayers as I'd dealt with the past year, actually meeting and conversing with an actual believer might just be worth it.

If and only if he turned out to be a match made in heaven, the absolute perfect doc, would we go ahead with the costly procedure. We had a few thousand with us. And surely, I had reasoned (although wrongly yet again), he wouldn't expect people to just come bebopping in his office with $10,000 cash in hand. So what we had would suffice, so I'd thought. Hoped. Prayed.

Next, how would we know if he was 'the one?' What would constitute the perfect doc? With this we flipped the Yahoo! Maps print out over and commenced to writing out questions we wanted answered. #1. Why are you a believer?

And now you are thinkin' she can't be serious, right? Oh, I am! I'm as serious as a heart attack! That poor guy had no idea what was barrelling his way at over 70 miles per hour. This little 'ol country girl was gonna get her money's worth. Booyah!

And finally we'd decided that whether or not we were able to have it done we were gonna return home to the boys and drop all these shenanigans. No more CCSVI or MS nonsense! The holidays were gonna be all about them. I say 'we,' but I mean, 'I.'

I feel I had been neglecting them. And I was gonna focus on them. Feeling better or not I was gonna come home smiling. Not lying. No. If I hadn't got the procedure I wouldn't lie and say I had. I would simply say I hadn't had anything done YET but that I was feeling better. And so it was a plan. The plan. My plan.

Finally then, well into the Tennessee mountains we turned on the radio. Yeehaw. We had some singing to do. “Whoa, baby! You better get outta this turn lane!” It was nearly 9 when we'd made it to our hotel. Late sure, but we'd made good time. Just two potty stops.

Anyways, it was a very nice room with a king bed located on the very end of the hall. Quite the haul had my Drury Inn saavy hubs not known about the back entrance. We parked by this secret door and our room was the very first upon entering. Sweeeeet! (Spoiler alert: Before we left, I had Jason reserve the same room for our next visit.)

Next order of business we call the parents. The boys and the pup are doing fine. Bummer about the insurance but as I said before my Mom had suspected as much. She encouraged me to go on with it. Pleaded, even. She assured me the money would be there. Remember – me and Amelia are to her what Asa and Abel are to me. I assured her I would do it if he was the one. God's will! Remember?

Caught up with Harry Potter on the lap top and fell asleep in no time. Had Harry made a good Seeker? I dunno. Talk about brain dead . . . I had alot on my mind. My poor little mind. Never mind that it is damaged by iron deposits due to lack of blood flow out and back to the heart. CCSVI? Huh? Anyone? Sound familiar? Grrrr . . .

Wednesday morning. This is gettin' kinda long ain't it? I sure can ramble. I know, I know. So how's about another continuation? OK with you? Good. I'll cover the rest of the trip later today. Or try to anyways. Pinky swear!

Thursday, November 18, 2010

LIBERATION Day or not

Good morning world! We are on our way home this bright, beautiful, crisp Thursday morning. Why so chipper, you ask? How is it even possible, you ask? How when I was supposed to be LIBERATED - possibly given my life back? “HOW?” she screams, raising and shaking her fist in the air. I got three words for ya: God IS good!

My wonderful husband waited for me to wake up this morning before bestowing upon me the words of wisdom he'd been given in the night. He says, “You awake?” I say, “Yeh, I guess.” And then I sigh and flop over to face this conversation eager entity. What words of wisdom could he have? After an evening of near silence . . . what?

Waking, I remember a dim glow from behind the bathroom door being the only source of light in the room; however, when I had come face to face with this man that must love me more than even I can understand, I noticed the room had not been dark at all. The sun peaking thru the curtains from behind Jason reflected off the white bed linens illuminating the entire room.

He was on his right side with his head propped on his fist – his elbow bent just so. When our eyes met he smiled his gorgeous smile. Who does that, really? This guy rocks, I tell ya! Had that goober been watching me sleep? Anyways back to the story. He says, “Remember your Uncle Scott's sermon Sunday?” Well, of course I did. I was supposed to have even written about it but hadn't gotten around to it. Remember?

Before I could answer he continued, “Everything happens for a reason. And the way I got it figured is this doctor will only be three weeks more experienced by the time we come back.” Uh-huh, I'd thought. He went on, “We learned that he is booked solid thru 'til January meaning he'll see several more patients before you and maybe – just maybe – learn something that will help in treating you that he wouldn't have otherwise.”

Brilliant guy, heh? I knew I hadn't married him just for his looks. So just as I'm about to get a bit teary eyed he really lays it on thick. He says, “I think we made the right decision to try to appeal the insurance company because it is important that they recognize this procedure as necessary.” He pauses and swallows hard. Was he fighting back tears too?

He continues, “I understand completely and will fight that fight with you . . . (warning: here comes the mushy part – get out your kleenex) . . . BUT, we are coming back in December and you ARE getting this procedure!” O.K. Take a tear wiping break here. Don't need one? Well, I do.

[To Be Continued . . .]

Monday, November 15, 2010

Baseline

MS or CCSVI - - - either way, symptoms I wanna keep track of:

Let's start at the bottom and work our way up. Shall we?

1. Toes aren't mine. They are often discolored. Right foot I can feel toes wriggle against each other. Left foot I cannot. Toes, feet and ankles swell often. Both ankles are weak and after too much use will give out. I suffer from drop foot. Right worse than left.

2. From the knees down my legs feel like huge blocks of ice. I can swear my feet are freezing but when Jason touches them he says they are warm?! Mystery. Knees are stiff and achy.

3. Thighs. Besides feeling extra huge and heavy I get a weird cool, trickling sensation down the backs of them from time to time. Bizarro, I know.

4. Whoa, Nelly! We've made it to the sacred private parts. Leaving out the gory details I will report here only that I have been diagnosed with a neurogenic bladder. Suffice it to say she has a mind of her own.

5. And her close buddy the bum isn't the most cooperative of characters either. Every 5 to 6 days is my normal. "End" of report on this (pun intended).

6. On to the belly. So big and so round I could pass for preggers. Yay, food!

7. My breasts? Nah. My rib cage. And the cursed MS hug! What's that you say? It's an immense, intense pressure beneath my breast spreading around my sides and at times clear around to my back. Constantly there but at times excruciatingly there. Yeeouch!

8. My chest. I get out of breath waaay too easy. And upon any exertion my neck and shoulders ache. The more I do the worse it gets. It gets to the point that I feel like I have a 400 lb. man on my back. Ever seen me walk all hunkered over? It's because that fat bastard is on my back.

9. Arms are okay, I guess. Just super heavy, weak and easily fatigued. Grip in my hands is iffy at best. Feeling is sketchy. Definitely diminished. Cannot tell hot from cold. And shaky and uncooperative whenever any precision is asked of them. i.e. shuffling cards is difficult and my handwriting never comes out the same. As for typing - thank goodness for spell check. I used to type over 75 wpm.

10. Finally to my head. Headaches. Some baaaad. Loud pulsing, swoooshing noise behind my right ear. Vision disturbances. Mostly blurring. Worsens with heat or exertion. Worse in right eye. And my teeth - I grind 'em. Also, I get light-headed all too often effecting balance and my ability to walk straight. One might refer to this condition as DIZZY.

FYI: [Dizzy is not to be mistaken with drunkeness or laziness as my condition oft is. Examples include but are not limited to my bumping into walls and furniture and remaining seated at church even after being asked to stand for prayer.]

Am I done then? Or did I FORGET anything? Ha! My memory sucks! The online MS community calls it "cog fog." And boy do I got it. It can be likened to what we call a blond moment around here. So what if I'm a blond and an MS sufferer?

Once an honor student, always an honor student. To explain, I have trouble understanding some things (especially 4th grade math problems these days) and even more trouble explaining. Understand? Good, 'cause I'm not sure I do.

Funny examples: Wanting to go see a movie we just saw with friends two weeks beforehand. Or asking Jason to go to Wal-Mart to get us lunch. There's no Wally World in the Vern. Question is did I mean to say McDonald's or Dairy Queen? Jason has become an excellent interpreter.

How about trying to tell the boys where their socks were this morning? I was pointing at the garage door. Saying the fireplace. And the kicker is they were in the hallway across from the bathroom waiting to be packed away for our trip. If it hadn't been for Jason the boys would have been sockless this cold November day.

Might as well laugh at yourself, right? Hehehehehe . . . considering the sobering content of this post it has been surprisingly fun. Has it reminded you of anything? It sure has me. It reminded me of a good 'ol fashioned David Letterman's Top Ten List. So we should give it a fancy name, right?

How's about "Angela's Top 10 Things She Sure as Hell Won't Miss Should They Miraculously Disappear?" Can I get an Amen?

Winning the Race

Angela racing? Huh? Remember the story of the tortoise and the hare? Slow and steady wins the race, right? My being called slow is, wellll, a polite understatement. And steady? Laughable! So what race do I speak of?

As my Liberation date approaches my mind has been racing. To explain, I mean wandering at break neck speeds. It's the worst at night. When my head hits the pillow - BAM! - my mind goes in to overdrive.

I sit here now at 20 'til 8 this gorgeous Monday morning mentally exhausted. So much to do. The house needs straightening. Laundry needs done. We need packed. The boys need packed. Do we have enough food to send with Gooch? And yet all I feel like doing is blogging. Hmmm . . .

I'm hoping I can get some of this gunk out of my head by 9 or 10 and then get down to business. Or perhaps I'll have a breakfast break at that point and return to the couch to bestow upon you dear readers a second installment. Alas, the sermon my pastor gave yesterday deserves an entry all it's own.

But back to the title. Winning the Race. Winning Hell!? I just want to finish the race! So let's purge some of that gobbaley goo. First things first - gobbaley goo? My pastor, when explaining something, often refers to what Webster says. I, however, will refer to what Angela says.

Angela likens gobbaley goo to miscellaneous paraphernalia repeatedly found in a junk drawer. Or the plethora of treasures that accumulate at the bottom of a purse. Gobbaley goo can be anything that gets in ones way. A distraction. i.e. defining a nonsense word vs. just getting down to the meat and potatoes.

All right, already! Here it goes. It's just after 8 now and although I don't know what time it is in Atlanta I'm already on edge about Jason calling them. Will he remember to call? Will they call him? Why does it matter? INSURANCE! Remember? We were supposed to hear back Friday. No news is good news, right?

Why does it matter? O.K. It shouldn't I guess, but it does. We are very blessed to have loving, caring family that are willing to help us out financially - should we need it. Many have offered. Others, including even my 'lil sis, have snuck in gifts here and there.

Crappy timing really. Just before Christmas. Plus we just had to license and insure our fleet of vehicles. And our fall installment of super high Park Ridge property taxes was just due. You know what? I accept cash, checks, money orders, PayPal and all major credit cards. Ha! Only kidding . . . maybe!

In all seriousness though we are very lucky. Jason does well. And we are very proud people. We don't like to ask for anything. We prefer to be the givers. And should this work out we do plan to pay our good fortune forward the best that we can. Back to why I've bitten all my nails off . . .

1. Many, many MSers that need this procedure as much or even more than me, sadly may not have the resources we are blessed to have. Thus, insurance needs to start covering this! PERIOD!

2. It's an everyday procedure covered for anyone else who needs it. Just because it's "unproven" to help out those of us with MS, geesh! Let me hop on my soap box a second. I'll be careful. Promise.

[Screw double blind, seven year long trials! People with MS can and very often do get or have other diseases! For example if I have a heart attack as did my Dad in his 40s - - - will you not allow me a cardiologist since I have MS?] Deep Breaths, Angela! O.K. I'm down from the soap box, safe and sound.

3. Common sense nimrods! My MS related meds are just over $2,000 per month. So that's 2100 x 12 = $25,200 per year on meds alone. That doesn't even take into account assistive devices or therapies, etc. Anyways, the procedure is costing anywhere between $9,000 and $15,000. DO THE MATH!!! Insurance companies could be saving money. Where'd that soap box go?

[Not to mention once better there's prolly other expensive meds I won't need. Plus less Doc visits. Plus, I might could even return to the workforce. You might not even need to cover me anymore as my new job might provide better coverage. Plus I'll need a new car. New clothes. Think of the economy.] O.K. so the soap box broke, but I'm fine. Enuff already!

1, 2, and 3. Enough of an argument as to why insurance should cover this, right? I think so. You think so. Right? I'm preaching to the choir. A sidenote: Since I began inclined bed therapy and high blood pressure medicine I have not cost my insurance for any hospital stays. Coincidence or concrete correlation that perhaps many of my debilitating symptoms are due to a blood flow disturbance? A treatable venous disease. Hmmmmm.

Knock on wood, right? I am. Knocking HARD! It had been 2 years hospital stay free before CCSVI. So now, nearly a year later. Do the math. 2 + 1 = 3. Wow! Three years and counting hospital stay free. Yay, me! To recap, the BP meds, I believe, have done wonders.

Sure, they were prescribed because my MS meds cause high BP. Whatever! God forbid I could simply have inherited the predisposition for the condition from my Father who fought it most of his life. Again, PEOPLE WITH MS CAN AND DO GET OTHER DISEASES.

Just to clarify: Let's say we break a leg. Will you treat it, Doc? Will you let me have an x-ray? Will you set it and cast it? I do have MS. And admittedly I prolly fell due to the balance issues I suffer from - again, related to the MS. Clear yet?

Say we get cavities too. Is it acceptable to be seen by a dentist since the MS caused the cavity? Huh? MS fatigue causes me to not brush as often as I should. And the rare times I find the energy to floss my MS riddled hands and fingers are extremely uncooperative. Thus MS equals cavities. Will insurance pay for a filling?

So I need my soap box again. You know what? Why don't I just stay on it. You don't mind, do you? Of course I'll have to sit on it because again, due to the MS, standing for any length of time is nearly impossible.

[Back to fillings. Why not just let our teeth rot out? If the Lord tarries and we don't go out in some big kaboom we will eventually need to be spoon fed liquids or worse yet, thru a feeding tube. Too much, you say? But it's the truth. Just the facts ma'am. And so, as gruesome as they may be, it's the facts I'm givin' ya!]

So why do I want the insurance so bad? Refer to 1-3 above. And I don't wanna empty our savings. I don't wanna take from others savings. I don't wanna borrow against an already paid for vehicle. I don't wanna re-mortgage the house. And I'm sure as shit not gonna sell my soul to the devil.

Thus, if insurance don't pay I say it wasn't meant to be. And this was gonna be it at least until it becomes more recognized as real treatment. Hopefully I wouldn't be too far gone in 7 to 10 years. Blah, blah, pity party, blah. GAME OVER. I need to get on with life. The boys need a Christmas. Aside from football I'd really been neglecting my kiddos.

So my Momma tried to put things into perspective for me. She says, "Well, what would you do if it was one of the boys that needed it?" And my response: WHAT THE HELL? Well, I'd have already been on a plane and had him treated in Poland. And been back again for appropriate follow-up.

Screw insurance. "My boy?" I asked. "One of my boys?" I would have taken from anyone willing to give. I would have borrowed against anything the bank would have let me. I would have been selling a kidney or two depending on the price of plane tickets. I was offended and had quite literally gone off on her - my dear Mom.

She waited for me to quiet. And then with a tearful voice she says, "You and your sister are MY boys." Hmmmm. Wow! I guess so. Really makes you think, don't it? Which brings me to another conundrum. If I do end up needing help do I take it on this unknown doc who now has nearly 20 procedures under his belt OR wait for my man Sclafani?

Still not good enuff? Costa Rica has done 350 now. Poland started waaay before them. And there's always Italy, home of Zamboni himself. Just sayin' . . . If it were one of my boys. And for the price plus travel I'd wanna be sure to get the best possible treatment. So why not for myself? Why'd I wait around in the first place and attempt to have it done near home? FAILED. Remember?

9 o'clock on the dot and Jason calls. I can tell by his tone it can't be good. Blah, blah, blah, blah. "Clinical notes." What? Atlanta called him before he'd even thought about contacting them. They say our insurance asked for clinical notes. They said they didn't have any but gave them all the proper codes. And they prolly wouldn't hear back themselves 'til the 17th. SILENCE.

"You still there?" asks Jason. "Yeh," I say, "So?". Jason replies, "So we're goin' anyway. We'll find out when we get there." Thus, if it's meant to be, it'll be. Sidenote: Trust in the Lord. Questions? See the next blog installment based on my Uncle's sermon from yesterday.

So I return to the couch. Thankfully not devastated. They could have flat out said no. So I'll just wait longer for the no . . . or yes. Whatever. I'm disappointed, but there's still hope. Back to the blog. More gobbaley goo to clear out.

I still haven't made my before video! That's really eatin' at me. I majored in broadcasting. I've been behind the camera since we got our first one when I was 12. I love editing video. Adding visual and sound effects. Why can't I get a simple video done? I keep going over and over what I want it to be in my head. Clutter, I tell ya! Clutter I don't need.

And clutter being a perfect segway into my next bit. I need to get this house picked up. I'm proud to announce that I'd been doing a phenomenal job keeping it up since it's last big cleaning before our Halloween party. But these last three, maybe four days - I've grown a bit distracted. Lax, even. My bad!

I got alot on my mind people. Remember? It's racing!

Wednesday, November 10, 2010

A Poem

Will she?
Or won't she?
Just why the heck don't she?

She heard of this miracle
way back in Spring.
So what is the hold up?
Ding-a-ling. Ding.

Go on girl, get it;
what the others have got.
There's a fix out there waitin'
Do you want it, or what?

The answer?
Quite simply,
She just didn't know.
Will she? Or won't she?
Go on girl. GO!

Truth is she's been on list after list.
Some have shut down;
and others too dist.
On again, off again. You get the gist.

Like Poland and Jordan,
now Mexico too.
Results are a plenty,
some cure 'em; they do.

Not all at once now;
please, don't get me wrong.
Curing us fully would take 'em too long.

One thing at a time will be fine with us.
Such as driving again
'stead of riding the bus.

Regaining feeling in fingers and toes;
or standing up straight and touching our nose.

Telling the diff'rence between hot and cold,
no choking on food;
all things to behold.

Memory. Speech. And toileting too.
Dare I go there?
Think I'll skip that part. Eww.

One hadn't walked in over a year.
Yet now post procedure she's walking - no fear!
Only days have gone by and each she gets better.
I hope there are more just like her - our trend setter.

Some say they don't feel different at all.
As sad as that'd be - the risk?
That's your call.

Will she?
Or won't she?
Just why the heck don't she?

So what if the feel-goods
don't last but a week?
What if, worse even yet,
the outcome is bleak?

The odds are real small that that'd be the case,
but anything medical - it's just what we face.
Our meds for example are scary as Hell.
Many out now can make us unwell.

So many worries.
I'd call her a sissy.
Just not to her face;
'cause she may throw a hiss-ee!

Will she or won't she?
Even SHE doesn't know.

The procedure itself makes her itchy and sore.
How does she know this?
Kinda had it before . . .

Yep, he was in there -
my veins with a scope.
Shooting down - killing -
'most ALL of my hope.

Hearing my story gave quite a few doubt,
but Doc 'S' himself said, "Girl, don't you pout!"
He feared many first timers would suffer the same
but hoped just as I did they'd stay in the game.

So that's what I did. Spring, Summer to Fall.
Now Winter approaches, does she have the gall?
Will she?
Or won't she?
Just why the heck don't she?

This time to the south she contemplates going.
LIBERATION FOR ALL ~ this movement is growing!

Would this time be diff'rnt?
Wasn't sure that it would.
Then, why is she Hell bent?
SHE WANTS TO FEEL GOOD!

-Angela Spindler (11/2010)

Sunday, November 7, 2010

For those just joining us . . .

It all started a year ago almost exactly to this very date. CTV of Canada broke a story of a vascular doc from Italy whose wife had been stricken with that 'ol crippling disease we all know and love - multiple sclerosis. "Heart-warming fluff piece," I can see the old gruff news director tagging it.

Heart warming, yes. But fluff? Try MEDCAL BREAK THROUGH!!! It wasn't long before this man had emerged himself in the MyStery that once was MS. Love for his ailing wife driving him, he discovered this supposed auto-immune disease may just be vascular in origin.

And get this: Is it a coincidence that the majority of MSers PROPERLY tested for CCSVI test positive? I think not! To be perfectly honest I believe those who haven't been found to have CCSVI have had one of two travesties occur. Option 1: They were misdiagnosed in the first place and don't really have MS at all. Thus they don't have CCSVI. Whatcha think 'bout them apples?

Ever heard of WebMD? Several of my docs sadly have not. It's a wealth of information, I tell ya! Oodles and gobs of neurological disorders out there worthy of making it on an episode of HOUSE, M.D. many, many of which could be masquerading as plain 'ol MS. I kid you not! THINK ABOUT IT!

And my personal favorite, as I feel this one has happened to me is, Option 2: Not being tested properly. Remember this IS new territory people. For example, newbie docs set in their ways either not really wanting to find anything or worse yet wanting nothing more than to disprove this Italian vascular cuckoo. How dare he of little significance even propose their big bad MySterious MonSter of a disease could have such a simple origin. And worse yet . . . REMEDY!?

Let me clarify for those of us suffering brainfog. Yay! Another of my fave MS symptoms. Or could it be a CCSVI symptom? Anyways, why would docs wanna change the way of thinking about a disease that they learned all about on day one of their illustrious medical schoolings. Why would they wanna have to go back to school? So what if it helps their suffering patients? SO WHAT?

Or maybe they fear losing all the money they get in kickbacks from all the oober expensive MS drugs. Big Pharma? Huh?! That'll hafta be a tangent for another time. But seriously, they themselves admit they don't know how their very own drugs work against the disease because ADMITTEDLY NEUROS THEMSELVES AREN'T EVEN FOR SURE HOW MS WORKS. Duh?!?

But really. Think about it. Neuros have alot to lose with this silly little singular vascular docs discoveries. $$$$ I'll say it again. $o what if it helps their suffering patients? But I shant waste my time worrying about the greedy heartless docs of the world losing any sleep. Alas I have waaay to many MS/CCSVI symptoms of my own keeping me awake at night.

Bladder emptying issues. Muscle spasms in my legs. Throbbing swooshing behind my right ear. And last but in no way shape or form least - the beloved MS hug. If only I could see that hugging bastard, I would start by clawing his eyes out. It's as if I'm in a big medieval device hell bent on crushing my ever protesting rib cage.

But enuff about me already, this set out to be a recap piece. An anniversary celebration! Can I get a 'Yee haw!'? A year, you say? Hard to believe it's been a year since CCSVI came to light. And as widespread as it has become it has still failed to truly COME TO LIGHT! But I'm not here to rag on all my local TV stations for ignoring my countless pleas for a story. Nope. No need for that.

Much has happened in a year's time. Much. Focus on the positives. That's what I'm hear for. A nearly year long JOURNEY I've been on now. In case you hadn't noticed --- I'm growing weary y'all. Where's Bobby Knight or Lou Holtz with my pep talk already? Let's see if I can't accomplish one all on my own, shall we? Here it goes:

Seems like only yesterday I remember getting online to verify my father-in-law's hearsay that someone somewhere had , dare I say it, found a cure?! WTH? It was that fateful night that I came across the CTV news program. I remember it in eery detail. Frame for frame. Nearly line by line. And as vain as it may make me seem, I remember it more so than even the 9/11 coverage. Forgive me, this Lord, pleeeeaaaase.

But I was intensely affected by this broadcast. I didn't know it in that moment, but it would shape the next year of my life. Probably - hopefully - even longer. So there I was on my couch just as I am now watching the aforementioned life altering perhaps life saving program! Not once, but twice in it's entirety. It had been split into two clips via Youtube. I sat in silent awe of the then brief and choppy before and after accounts. MIRACULOUS!

What a weird name I had thought - Zamboni?! And to hear him talk. He struggled with his English but his PASSION came thru loud and clear! They called it the Liberation procedure. CHILLS! Everywhere! I remember thinking about one patient, "That poor bastard looks like me!" Tears welling in my eyes. Streaming down my face. I didn't dare wipe my eyes for fear I would miss something.

Denise jumping. Kathleen dancing. Marsha in heels. Yvonne's speech. There've been many tear jerking triumphs since but none has gotten to me as much as the first. The breakthru of the breakthru, if you will. I mention names you haven't heard of? I now know these ladies well. These lady pioneers!

In this time I have amassed many, many friends on Facebook from all over the world. Fellow bloggers and vloggers, all with their own wonderful stories. Boggles the mind how much I have in common with so many of these once complete strangers. I am blessed to share in the lives of so many.

Thank you all soooo much for this honor! Alice, Kimberley, Bhakti, Tina, Brenda, Tessa, Judy, Jeanine, Paul, Christopher, Ken, Diana, Dawn, Linda, Lee, Steve, Mike, Irishbear, Tommy, Carol, Devin, Sandra, Susan, Helen, Andrea, Shelly, and Thane to name just a few. As goofy as it may sound we truly have formed a wonderful family. Yay, internet! We wouldn't be nearly as far along in this miracle without you. Should I thank Al Gore too? He invented it, right?!

Alas, as always, I digress. Back to sooooo much has happened, then, right?! Docs have opened up. Docs have been shut down. One of my first new friends has passed on waiting for the procedure. Love you, Bridget! She was only 41. This is inexcusable. Grrrrr . . . And another nearly dead. Feeding tube and all. Barb is now home and resting well with her family thanks to a simple angioplasty.

There have been papers published. Conferences attended. Rallies rallied. And numerous NMSS functions crashed with handy dandy CCSVI information made available to the masses. I even hit a local walk myself, with help, of course. (Thanks, Melissa and daughter for spreading the news! And to Jason for pushing me all over downtown Evansville!)

So a year long JOURNEY! A rollercoaster. Back and forth. Up and down. Around and 'round. Then back again. And faster! You want more details? Then read my blog! Devils in the details! But pish posh with the details I say as an official MSer or over 10 years now.

Who cares which came first? The chicken or the egg? God created it ALL and I love me some eggs for breakfast and fried chicken for, wellll, truth be known - anytime hunger strikes! Whether or not this CCSVI causes MS or MS causes it is niether here nor there. The long and the short of it - the bottom line is . . . remedy the CCSVI and symptoms us MSers have thought of for years as MS symptoms are improving. Some even disappear! Period!

As if walking toe, heel, toe, heel and jumping aren't enuff - there are MSers running marathons! Riding bikes. Rock climbing. (Insert your fantasy here!) Everyday brings more good news. And bad, sure, but for every bad there's consistently ALWAYS waaay more good. And this IS my life I'm talking about so, no, I ain't lyin' people!

Some haven't seen any huge improvements. Some say none at all. That said, let me refer you back to my disproving doctors theory. Also even the most well intentioned of docs may have missed something or not done something as adequately as they should or could have. Just sayin' . . . THIS IS NEW! CUTTING EDGE!

Have I successfully gotten you up to speed? Refresher course complete? I had hoped this stroll down memory lane would fire me up to get goin' on my before video. I have a degree in journalism ya know. Emphasis in broadcasting. No pressure, right? I'd hoped to blow all the other before vids away.

There'd be super cool 80s music, of course. And it'd be all music video like utilizing my highly sought after editing skills. I've thought about mixing the wonder that I once was with what MS has done to me. But why? Why all that work? I dunno. Possibly as a distraction. My mind is racing.

Why am I not pepped? Do you feel pepped? I sure wanted to. And I don't. Maybe I should hunt down the ROCKY soundtrack and give this blog another go tomorrow. 9 more sleeps 'til the ATL. I'm feelin' like I may just need to blog. You up for it?

Or edit, or sleep, or just play Scrabble. Wait. I think my crops in Farmville may be ready. Pray for me, pleeeeeaaaaaase!

CCSVI Journey

Friday, November 19, 2010

Appeal

Wednesday (Pt. 1)

Decisions, Decisions

Thursday, November 18, 2010

LIBERATION Day or not

Monday, November 15, 2010

Baseline

Winning the Race

Wednesday, November 10, 2010

A Poem

Sunday, November 7, 2010

For those just joining us . . .

CCSVI a cure?

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