Wednesday, March 31, 2010


Has she lost her ever lovin' mind? Well nearly. MS does that to a person. Anyways I vowed to my husband and myself last night that I would leave Dell alone and focus on housework. Boy, does it need it. I'm unable to keep things up as nice as I'd like them but I do strive to maintain some symbolence of order.

My men, Dell excluded of course, do need clean laundry from time to time. And to make that happen the dirty ones must be collected, blah, blah, blah, etc. etc. All work you guys may gripe about, but I really do struggle with. I'm actually looking forward to diving into a pile of laundry higher than my head (not by accident as it sometimes happens) and coming thru the other side with a smile and baskets full of neatly folded, organized clothes and towels.

You know what? One day I might even carry that very same laundry up the stairs and put it all away. Standing to hang what needs hanging and stooping to put in drawers what needs put in its proper, neatly kept drawer. And not like Mary Poppins does it either. I want to be able to do it myself. Without a thousand breaks inbetween, without sitting at all really, and especially without having to half way thru the task - ask for help.

So aside from laundry (the boys are still dressing themselves with clothes from somewhere), I've been slacking in other areas as well. Dishes are failing to make it back to the kitchen. Trash is failing to make it, well, to the trash. i.e. the table closest to me is littered with an empty lunchables box, various candy wrappers, scattered worksheets from school, a couple of war torn wrestling action figures and a half-eaten Webkinz animal.

Jason used to roll his eyes at me when I'd call my scurrying about picking up about a million different things - DAMAGE CONTROL. But truly right now, it has become clear the little stuff I still do really does make a difference. A week off of any so-called damage control has really, wow, I can't even put it in to words. Angela, with nothing to say? I know, right?!

A tornado maybe? No, it wouldn't have left this much debris. Burglar maybe? No, surely he'd have taken something. Let's just say if one were applying to clean it, one would need a hazmat suit, a shovel (one of the large scoop variety) and alot of time. Any takers? Only kidding. Well, maybe . . .

So alas, Dell cried out to me and I longed for his embrace. No. Wait. More like he longed for my embrace. No. You aren't buying it are you? It's not Dell that I'm craving. It's CCSVI info. It's gotten baaaad, people. I liken it to cocaine, crack or heroin, maybe. Or Posey County's fave - meth! I just gotta have it. The info, not the meth! Even though its said to aid in weight loss and increase energy levels. What kind of info, Angela?

Success stories and others' blogs are best. Forums, one of which the good doctor, Fini, I call him, actually writes on himself answering patients questions. People are Vlogging on it now and not just blogging. Don't panic, I'll spare you the video until post cure maybe. There's even jokes about buying home remedy kits and people singing songs about it. My fave is stuck in my head now, thankfully because Annie was getting tired of singing. It goes "CCSVI, CCSVI, people tell me I'm wrong, but I know it's a lie . . . I got CCSVI."

I go thru "just the facts, ma'am" over and over again because stuff that came in today might be different than what I'd read about it yesterday. I anxiously await what will be out there tomorrow. I crave to know all there is to know about CCSVI. And I must be on top of things and get on as many waiting lists as possible.

Go ahead, call it a-d-d-i-c-t-i-o-n. Hello, my name is Angela, and I do have a problem, but its not addiction. My problem is nobody's fixing my problem. Those gracious docs that are doing this procedure on patients are rumored to be booked up already in to 2011. I must be diligent in keeping myself up on all the latest going-ons, in getting on as many studies lists as will have me, and in spreading the word.

Sure more demand will make for longer lists and longer waits, but I just can't imagine someone with MS not knowing about this. I didn't until a week ago. God at work I tell ya. Just happened to get news of this allowing for two or so days of research before my regularly scheduled neuro visit. Remember? The one I didn't cancel only because my prescriptions were needing re-written. Co-winky-dinks, indeed. Praise Jesus!

So to answer the question several followers have had . . . I don't have a clue when I'll hear back about results, if at all. I do plan to call the place that did the tests by Friday to see about getting a copy of them, if possible. I mean its my brain and veins, so surely it shouldn't be too big a hassle. We'll see.

P.S. I just got confirmation I was added to another list in New York. Way closer than, Bulgaria, right?! What up Tina? You ready for a roomie?

So please keep following. Keep praying (for me and my house)! And don't forget to shout from the rooftops, "There's a cure!"

Tuesday, March 30, 2010

Dinner and a movie? No. Dinner and an MRI.

Women have been said to re-pay their dates for dinner & a movie in a number of ways. For example, a kiss, first base, or, well, you get the idea. How in the world was I to re-pay Jason for taking me to dinner & an MRI?

You can lower your raised eyebrows now, this is scheduled to be a positive, mostly G-rated, tale. Where did we leave off? Monday, monday. No call from the neuro. Can you believe that? Had a delicious burger and enjoyed watching TV with my men the rest of the night. Then off to bed, Annie still singing in my head.

Alarm goes off at 6. Jason and Asa go thru the morning routine minus my assistance/refereeing, thankfully, since I didn't sleep well fretting over how today would play out. Abe followed suite opting to sleep in himself until just after 9.

But alas I'd had enough of trying to sleep and went instead for my trusty lap top. We've become awfully tight this past week. I've got bruises to prove it. Raised eyebrows again, heh? I bruise easily. And Dell, did I tell you I call him Dell? Dell gets mighty heavy weighted down with all the research he's been doing.

Research commences, Abe gets up and Grandma brings my purse by. Remember? I left my purse at church Sunday. THANK YOU GRANDMA! Next up, we printed off some research, got Abe to school, and Jason cleaned out the truck while I showered and dressed. Oh, how I long for the day showering and dressing won't tire me out!

Whilst showering it overcame me that I was going to have to take off the ring my Dad gave me before he died. Tears fell, you betcha. This would be the first time I'd taken it off. My wedding set I switch out from time to time with a bigger set Jason got me for our 5 Year anniversary. My others, I switch out with others depending on mood or outfit, or whatever. But my birthstone Dad got me, NEVER! I painted the bathroom in my old house a nasty Pepto Bismol pink and didn't take it off. As a matter of fact it still has Pepto clinging to the setting. Anyways, this was hard on me. An unforseen obstacle, that is until I envisioned Dad laughing and shaking his head at me in disbelief. Fine, Dad, I'll take it off.

Crisis deverted. Stupid really. I'm a bit hormonal and on edge, k? Fine. Let's sing. Hi, Ho, Hi, Ho, it's off to tests we go. Imagine going for a test and praying for a blockage. I felt almost wrong praying that prayer as so many had probably prayed for clear tests. Hmmmm? I then decided to break it down. I'd pray for our safe arrival. We got it. Then to not have to wait long. We got right in. And for everyone to be nice. They were. Even the contrast went well as I only got stuck 3 times. For me just 3 sticks is a miracle in itself.

So one of my favorite movies of all times comes to mind. Cannonball Run. Another hilarious movie that could have only been better had Richard Pryor been a Cannonballer. The part where Dean Martin and Sammy Davis Jr. have the dialog about God being their co-pilot. They were racing in a red two-seater Ferrari and were confused as to where God would sit?!

Anyways, I knew there'd be no problem, God fitting in that tiny MRI with me. He was there. I felt Him all around me. He was at work for me already. So instead of merely asking Him for more I layed there thanking Him for all He'd done. And finally, may His will be done. May the right results make it to the right hands and the right fix, or even no fix, if that is His will, be set in motion. Again, thank you, Jesus for all you do in my life and for all you do in the lives of so many others following this journey. Amen.

So we are half way thru and I ask the technician how many patients she's had come in asking about CCSVI. She replies, "CC, what?" Well I ain't talkin' 'bout C&C Music Factory. I attempt to explain and before returning to darkness I tell her to Google it. So as the tests are finishing I realize maybe it's His will that I spread the word. The news of this Italian Vascular surgeon healing his wife's MS hasn't gotten to much of anyone outside of those MSers eager for a cure and those who love them.

So why preach to the choir right? Maybe my tests will only confirm I have MS. Darn! I'd hoped they wouldn't, Duh?! Maybe my tests were to get me there to let the cat out of the bag, if you will. Let the word be heard by the un-believers and even, dis-believers. Get the picture? I do. Thank you, Jesus, I feel better having enlightened two others. Two others that approached by their next MS patient might just be more knowledgeable on the subject and spread the word even further.

Now a Molly Ringwald classic comes to mind. In The Breakfast Club, Judd Nelson's character declares, "He'll get up. She'll get up. We'll all get up. It'll be anarchy!" Surely we won't need to lead a revolt but I'm willing should I have to. Are you with me? Richard would be I tell ya. And yeh, in case you're wondering Richard Pryor could have made The Breakfast Club a better movie too.

We were even told to have a good evening on our way out. What hospital/doctor's/testing establishment wishes you well and means it? This whole experience went phenomenally. I am soooooo greatful. Thanks to everyone involved. All family and friends involved. All nurses, techs, receptionists, greeters. Even some guy in the parking lot smiled at us as we were going in.

Hey wait a tick - it's time for 'Lost' . . . priorities! I know. More later.

Monday, March 29, 2010

One ringy dingy . . . (aka Pt. 10)

Will they call or won't they? Will I break down and call them? Shortly after 8 this morning the phone rings. As I make my way from the couch to the wall phone in the kitchen possibilities of who it might be on the other line begin racing.

This early it can't be family unless there's something wrong. Maybe Asa had forgotten something he needed at school, I'd thought. No. Probably some poor telemarketer that was gonna suffer my wrath having rushed for the phone as I had. Come on, come on, be the neuro! I pick up the phone, no caller ID, so still no clue, and I say, "Hello?"

IT'S NOT THE NEURO! Even better though, it's St. Mary's pre-admitting. Is this Angela Spindler? Well, yeh, as a matter of fact it is. The sweet voice from across the line explained, "Well I was hoping you had some time to answer some questions for me so we can get you pre-registered for your test tomorrow." She continued, "Then I'll try and answer any questions you may have about it." WHAT?????

I said, "Sure, no problem, but first can you tell me what test it is and when?" She seemed a bit taken back but after confirming information on me and learning I'd not yet heard from my neuro's office she obliged. Yeah! I'm getting a test. Step one. Check! So back to my couch wrestling feelings of joy, disbelief, relief, and eventually worry.

Back to the phone to call Jason. Catching him up he, excitedly says he'll take the afternoon off and that even if its not the so-called right test we'll go there with all the right questions. This is a step, be it sideways or forward, at least I'm going somewhere towards getting better. This just being content with debillitation is for the birds. I'm happier putting up a fight. Well, of course I am! Don't know why I didn't realize it sooner.

Then another call about 1, I reason this has to be family just checking in cause no way no how it would be the neuro during lunch hour. Would it be mom or sis? Maybe Grandma about my purse? Hopefully everything's o.k. at school. Who then? "Hello?"

It was St. Mary's again. "Hi, this is Sue from St. Mary's." Also very nice. She went over test prep, asked me to bring meds and made sure I knew where they were located. Then she had me hold for Tracy in insurance. Here we go I'd thought. The price tag. I prayed they'd at least turn me down politely and follow with prices and payment options - also, politely. And polite she was. "Looks like its all gonna be covered," she said. PRAISE GOD!

It's now approaching 2:30. Soon the boys'll be home with stories of their first day back. They'll want a snack. Maybe the weather'll let 'em get some trampoline time. Still though, I wonder if the neuro's office will call me? Maybe they just assume the hospital calls for certification so why should they have to too?

Hmmmm? You know what? Who cares? I've got a test tomorrow! Annie sings, "Tooooooo morrow, tomorrow. I love ya, tomorrow. You're only a daaaaaaay. Aahhhhhh. Waaaaaaaaay."

Weekend at Bernie's : A recap Pt. 9

"No, I ain't dead yet!" scoffed Richard Pryor, once the funniest man alive, now the funniest man dead, from his wheelchair. He came out about having MS not too long before he died. He'd have joked about whitey having come out with a cure only after he'd bit it. Back to the title though, I could write a book on Mr. Pryor. I love that man! Where was I?

O.K. so I'm not dead but my weekend mirrors much of that movie's story. Hilarious movie really, 'Weekend at Bernie's.' The only thing that could have made it any funnier would have been to have Richard Pryor in it. Again, with the going off track. So much to say and only these crummy bumbling fingers to type with. Grrrrr.

The last weekend of Spring Break before the dreaded return to the grind for the boys. I wanted it to be at least a little special since break itself hadn't been all that. It having rained most of the week and their mom having suffered from lap top seperation anxiety - even camping didn't last so time on the Wii and simply getting to be away from school had been the highlights.

Friday night at Baby Girl's birthday began the farewell to Spring Break festivities (or lack thereof). Abel got to spend time with the love of his life, Jaycee, and Asa, well there was cake so it wasn't all that bad. I felt like I was going thru the motions, even glad to see friends I hadn't in so long, but still seemed somewhat detached.

Fine, detached was what I needed. Detached from CCSVI though, not the world outside of it. I rested well Friday night - just plain exhausted really. Then Saturday morning Jason left to help Aunt Ann and I found myself again at my lap top. But armed with a bit of extra energy I revisted giving it to God and needing to chill out only to search petfinder for dogs. I called up my sister hoping she'd be able to go dog hunting today. Yeah! She could - we'd leave by 1.

Walking up to the Evansville Animal Control was hard. Bernie never walked afterall. He was drug or made his way around via golf cart. It was not only hard physically, it was hard emotionally as I had to watch myself struggle, the entrance to the building covered in a reflective mirrored type of glass. Frustration and tears almost set in. How awkward I had looked.

My sister walked just ahead of me. I could tell she was going slower than usual in an attempt to allow me to keep up. Actually seeing myself, next to someone, almost my same size, age, etc., WOW! I wasn't jealous, if that's what you're thinking. I was horrified. My gait was much worse than I'd imagined. Somebody get that hussy a wheelchair, already. I hadn't even brought Dad's cane along. Not to worry, sis can carry me.

So we made it thru the shelter. I leaned on walls and held on to cages. She may have even found the one! And I so enjoyed spending time with her. Just us girls. Not a kiddo in sight. Besides almost falling into her car from the curb, I'd made it! We returned a little after 3 and I returned to my couch and my lap top. That building didn't have to have a mirrored entry. Amelia didn't have to walk slow for me. It was God at work - opening my eyes to how bad I really need this procedure.

Jason left for the derby shortly after my return. I so wanted to go but knew I wasn't up for all the walking and stairs that would be involved. (Sidenote: Post cure I'm starting up a roller derby team, so dust yer skates off ladies!) Then I settled in with my boys to watch a movie and play the Wii. I must've been drifting in and out of sleepytown between 4 and 7 because 7 and a wicked case of hunger crept up fast. Thank you Granny and Papa for bringing us supper!

Once our bellies were full we commenced to wrestling on the Wii. 10 o'clock? What? Where did the day go. Up to bed we went and just getting settled in, Jason made it back from the derby. Now I could sleep. ZZZZZZzzzzzzz.

Off to combined service and the Easter play. It was wonderful as always! Both boys told me they want to be in it next time. Awesome. Who'd have thunk it? Abel, bless his heart, thought they were actually nailing 'that guy playing Jesus' hands to the cross. With it raining as we left Jason suggested a m-o-v-i-e. Well, sure that sounded good, and pssst, if he's paying attention, Asa can s-p-e-l-l.

We stopped at home to let the puppy (and others, especially those with bladder problems), pee. P-e-e for those still spelling. And where's my purse? I'd left it at church. I'll call about it in a little while. Did I ever call? No! I forgot that too. Arriving with time to spare we perused Menard's. Yes, I was dropped at the door, and each of my 3 men took turns pushing me.

Then we watched 'How to Train Your Dragon' in 3-D at the I-MAX. Big time right? I sure thought so. Pretty decent movie too. Still not good enough to cap off their break we returned home to pizza from Dean's and watched Wrestlemania pay*per*view LIVE. Yeah! Well, the guys did. About 8, I headed to bed. The basement to the main floor. Then 8:30 or so after resting up with Gooch I made it up the next flight to the bedroom.

I called my mom to say goodnight. She told me Grandma had found my purse. Shew. Good thing. I'd forgotten I'd lost it. Another reason I need this procedure. I'm getting so forgetful. Scatter-brained, even. I hope its not too noticeable - not like my walk. So it's a school night - that I do remember, but I'm not sure when the guys turned in. I was out before I'd even pulled up my covers. ZZZZZZzzzzzzzzzz.

Saturday, March 27, 2010

T G I Frick, the office closes early Fridays! Pt. 8

After posting Part 7, I pushed the lap top aside to lay down and proofread. Ever the editor, I just can't help myself. Sleep had different plans for me however. And sleep I did until near 11 when the phone ringing woke me. It was the neuro's office! Not even out of bed and my Friday was looking fabulous.

"Welllll," the receptionist said into her speaker phone, "the doctor has told me to go ahead and schedule you for an MRI and MRV."

"Great!" I replied as I jumped out of bed. I jumped for joy and, well, cause I had to pee bad, but mostly for joy! Then she went on about doubting that insurance would cover any of this. Fine, no problem, I assured her to continue scheduling, I had to know if that miraculous cure was for me. "Thanks so much, and goodbye," I said greatful.

Potty bound mere seconds later the phone rings again. The caller ID indicates it's the neuro's office again. Maybe she'd accidentally redialed me or something. Nope. Apparently she wasn't through with me. "St. Mary's or Deaconess?," she demanded. I replied it didn't matter 'cause in the back of my mind I wondered, if insurance ain't payin', what did it matter.

She continued that most Welborn HMO only allows for Deaconess now. Fine, I'd thought, but kept silent. She asked again if I was sure I wanted to do this and upon my response of yes, she finished saying she'd call St. Mary's.

Somewhat distraught now, although finally on the potty, I wondered why she'd chosen St. Mary's? Was she trying to be sure the insurance wouldn't pay? Was she trying to run me off my road to recovery?

FIRST, INSURANCE SHOULD COVER MRIs IN MS PATIENTS! It's been years since I've had one and I used to have them every 6 mos. to a year or sooner when experiencing an exacerbation. But whatever! And according to research and MRV is only 10 minutes and some extra dye tacked on to the MRI. And my MRIs usually come with and without contrast so I'd already have an IV in. It's not rocket science people! Well, maybe it is a little.

SECOND, INSURANCE SHOULD COVER FIXING VEIN AND/OR ARTERY BLOCKAGES! My momma suffers from PAD of which she was tested for by test ran that insurance paid for. My dad had several insurance paid tests and subsequent procedures including angioplasties and open heart bypasses.

THIRD, AND FINALLY I CONCLUDE I'D BE MUCH CHEAPER JUST TO FIX NOW! My meds alone are astronomical per month and I'm only on 2 for MS. Consider as I age and the disease progresses I'll need more. Plus assistive devices beyond the cane my Dad picked up at a yard sale. And great grandparents of mine have reached their nineties. I'm only 33, I'm gonna cost ya if you won't fix me now!

OK? OK. So Jason says chill out. Fine. He brings me lunch from DQ. Yummy. I then spend the afternoon with Gooch on the couch watching 'The Neverending Story' hoping mine does end - happily and not so long from now that effects can't be reversed! 4:00 and still no word back from the neuro with test info. Jason innocently asks, (declares), "Don't they close early on Friday?" Uggggh!

Fueled with anger, I get enough energy up for a shower. Thanks anger! I need fueling. Yes, people, hygiene takes alot out of me. Water gets me too hot and I'm a gonner. Used to be showers made me feel good. Rejuvenated even. Now they wear me out. And today I needed to wash my hair and shave my once beautiful long legs. It was gonna be quite an undertaking. I truly need a side blog for tangents of my own.

My legs used to be my pride and joy. Muscular. Man! My dad would say, "Damn! look at the muscles in them legs!" I put on weight when I started lifting in sports and was astounded to reach 140. But muscle weighs more than fat, dad would giggle, proud I believe, of the athlete I'd become. And my Grandpa would say I reminded him of Grandma who he's lovingly called 'Slim' for years.

So symptoms have worsened, a major one being the slow death of my right leg, and shaving especially my bum leg is a chore. As I struggle to lift it, years now I've felt nothing but disgust for it. Why leg? Why must you betray me so? But today tears welled up. By accepting decline maybe I have been betraying my once gorgeous, muscular limb. Shave, shave, shave, we may be back in business soon.

Dryed off and exhausted, but clean at least, off we went to get the boys and head to Point for Baby Girl's birthday. Happy Birthday, Miss Thang! Make a wish. I have!

Friday, March 26, 2010

Patience is a virtue

I was once told this by some old guy waiting in line somewhere to do something and at the time I wanted to smack him. But that is exactly what I hear myself saying to Ang now that we are waiting to move forward with this.

This thing is to big and to promising to go away, but it is also moving to slowly for the hundreds of thousands of MS suffers out there. “Time is brain” is the mantra that is being used in the blogs and facebook pages and tweets and any other form of Internet medium we can use to get the word out.

I have faith that this will happen for her, but I fear the wait will be a tough load to bare. Hang in there honey we will get there........

What to name Pt. 7? Trash Day (aka Pt. 7)

Thursdays are trash days on Hawthorne Drive. And in reviewing parts 5 and 6 to see where in my saga I'd left off - trash came to mind. And not the good kind, like back in the day sporting red high heeled shoes, daisy dukes and a strapless tank, I won that Trashy Woman contest fair and square I tell ya! Those were the days.

Back to reality, after no call back from doc and none of my family even being able to read my blog - I felt like garbage. Jason did come home from work with news he had actually been contacted by the lady interviewed for the WSJ article. She told him she and many others had gotten all over the writer siting mistakes and questioning his negative spin.

She advised there would be plenty of bumps and even attempted blocks but to forge ahead because it was a road well worth staying on. Jason remained optimistic, but my inner dialog, apparently a screamer, shouted, "Whoopidy, dooo!"

As he left with the boys for kung-fu I settled in on the couch with Gooch to catch up on some episodes of House. I love Dr. House! I vowed to put my lap top down for awhile. One episode, a couple of prayers and a few tears later I went upstairs to bed.

Grey's Anatomy, Project Runway, still no wind in my sails. Then Jason returns home with a chocolate bunny for me. So sweet. Him and the bunny. He also reports his parents have read the blog and watched some videos and are excited for us. Others are following too, he says.

His cousin Jeff has told him he'd be willing to hold fundraisers through his school. Community Martial Arts: Kickin' MS Ass, I think would be a good tagline. And then my mom calls to tell me her and Amelia finally read it. Then Jason comes to bed (lap top in tow as always) and compels me to check my mail before turning in.

16 messages. "Yeah, me," celebrates London Tipton {clapping}. Please forgive the Disney Channel reference. Anyways, thank you all for caring! Sleep came to me last night amid renewed hope and friendships.

Now Friday morning, the boys are over at Granny & Papa's, and I should be fast asleep. But alas here I am wide awake in bed at the lap top. I've turned in to Jason. No, wait, I'm not getting paid for this. Hmmmm, anyone? Anyone? Buehller? Anyone?

Thursday, March 25, 2010

Skittles and Cancer (aka Pt. 6)

Further, I can't help but wonder if there isn't a cure for cancer out there somewhere too.  Just sitting there.  Like Skittles?!  My dad was not a fan of candy in general, but to find out Skittles could have cured him?  C'mon!  There's a simple procedure, a same day procedure even, that is fixing people.  Why aren't people lining up to get it?  And to give it?
O.K. so riddle me this . . . if the neuro's are anti-fix why aren't the radiology and vascular guys jumping aboard?  They stand to make a lot of dough here.  And the drug companies raping us of thousands a month for meds that may not even be working?  Well, I guess I do understand them being against it but insurance companies should rejoice with a new cheap fix.  They'd save bazillions in the long run. 
Common sense people!  But I'm preaching to the choir, right?  Wrong.  You can help.  Please help.  Next time you're at the doc's for a cold or even the podiatrist for ingrown toenails - whatever - ask 'em about CCSVI.  Ask them if they'd be willing to take a harmless Skittle to cure cancer.  If it worked on others it might work on them too.  What about prescribing a Skittle?  C'mon, its harmless and I've seen it work.
Ridiculous?  Is it really?  Not so.  If its been proven, its proven.  It may not work on a few, not on me even, but better that I tried.  Better that I fought for it.  I just don't see the harm.  Make a list as my mom taught me to do.  Two columns.  One good.  One bad.  Let me tell you my bad column as of yet remains empty.
Shout this from the rooftops.  Tell everyone you know.  This has to fall on the right ears sometime.  Soon, hopefully, 'cause my MS is progressing in case you hadn't noticed.  I haven't fought too hard these ten years - content to swish around the bowl - accepting my inevitable decline. 
I was fearful any abrupt fighting movements against what was to be may hasten my reaching the drain.  I am greatful the decline hasn't been faster, or worse yet devestatingly immediate.  However, it's still coming at me.  Like a bug down the toilet, I'm scurrying harder there towards the, ummm, let's call it the darkness. 
Forward this won't you?  To your entire mailing list.  Call it junk and apologize for it later.  Somebody out there that hasn't yet heard - they're gonna step up and make all this go away.  And now I close my eyes and click my heals together . . . 

Poop on a stick!!! (aka Pt. 5)

Anyone still reading this? After my morning, I may soon revert to being only a reader. Not that I'd become an aspiring novelist or what have you, not by any means, but, DAMNIT, I had become hopeful. Grrrrrrr!

First things first, I need to hit rewind. Back to the opening door and email from Brooklyn. Yeah! With Jason's patience and computer know-how, Excel was installed on my lap-top, my meds from upstairs fetched and my cheek kissed with love and encouragement. I love that guy! Has anyone picked up on that yet?

Once all the fields were filled and the document attached, I took a deep breath in and clicked SEND. With the breath out I gave it all to God again and attempted to relax. My boys were back early from camping and I welcomed the distraction.

We watched a movie. I can't remember one characters name. Storyline? Nope. Title, even? Hmmmm? I began to blog. And blog I did. I'd still givin' it up to God, but recounting what had gone on so far couldn't hurt. As a matter of fact getting things off my chest and out of my head helped me sleep better last night.

Sure, the countless trips to the potty still remained, but at least they were accompanied with a hope they wouldn't have to last. Bye, bye neurogenic bladder and hello fancy new sexy panties!

Raring to go this morning I made a mad dash (funny, I know, right?) for my lap top. I had so wanted another early morning e-mail from Brooklyn. No dice. Maybe one of the several local inquiries I'd made would be answered by now. No again. I set out to inquire more and research more. Spread the word - eventually it would fall on the right ears.

I thought my neuro's office would never open. Nine o'clock finally came and I chickened out. I reasoned that the receptionist would need to be good and settled in before dealing with me. 9:30? Still too soon. 10:00? I dialed the number expecting (maybe even hoping) for a busy signal. Three rings and an answer.

Rarely at a loss for words, I struggled with even introducing myself. My e-mail address, which I've used alot these past few days, contains Orth, my maiden name. So this morning I was an awkward "Angela or . . Spindler." So I told her I was calling early because I needed to get a test scheduled, but while I had her, I asked if there'd been any progress on the doc's research.

She answers, "Yeh, he had me call the place that does dopplers and they ain't touchin' it. No one around here will." Now how could she know that? Did she talk to everyone around here. And what constitutes "around here?" 50 mile radius? 100? What? Silence. Then she started up as if she were the expert on the entire situation, explaining to me that Europe wasn't even testing for this anymore. Huh?

"What test do you think you need?," she finished, with emphasis on YOU! Swallowing hard I explained I'd been contacted by a doctor doing a trial in New York and that they had asked for a recent MRI or MRV. Welllllllll? She came back with, "You're gonna go to New York to get this thing done?" Well yeh! It's closer than Europe! She took my # and said she'd get back with me. It's nearing 3 now - and no calls.

Meanwhile back at the ranch, what is she talkin about? Eyeball deep in research I've found no such news. This is where my title comes in to play: "Poop on a stick!" I screamed after reading the Wall Street Journal's take on things. Finally publicity, but bad, misleading, flat out false. Grrrrrrrr! This sucks! Stats were wrong, the good doc misinterpreted.

Calm down Angela. Calm. Jason reassures me at lunch. Don't let this get to you. Fine, I'll just kick back, maybe blog a little, look around Facebook and play some Farkle. Upon checking e-mail I discovered the director of our local MS chapter had finally gotten back to me.

She basically explains this is soooo new that only the bigger neuros at the MS centers know anything about it. So new since Sept. of '09? So new some treated patients have been symptom free 2 years since their procedures? What constitutes new? And what self-respecting neuro anywhere can't be up on this? Well at least she got back with me.

More to come later. I've got a Skittles rant to go on.

Rough day

As I said before we had convinced Ang's Neurologist to do some research on CCSVI.  Then a main stream media source finally decides to do a story on it and gives it a negative twist.  Of course that's the one thing the doctor's receptionist refers to when we call to check in on things and try and get an MRI setup.

This is going to be a hard battle because of the money at stake for drug companies and neurologists alike.  I just hope we can get past the money changers and make some real progress.


The Devil's in the Details (aka Pt. 4)

As I remember our dialog it pretty much consisted of me rattling off research stats, obvious similarities between tests subjects and myself, and detailed accounts of success stories, etc.  Pausing for a breath the doc chimed in with, "I can see you've made your mind up."  He's right.  I had.  He admitted it would be a waste of everyone's time for him to try and talk it down.  Right!  Smart doc I've got, ain't he?

I followed asking if he'd be willing to recommend me for the needed tests?  Well, sure he said but didn't reach for a pen or paper to write an order.  He warned insurance probably wouldn't pay.  Well, I asked, would you if I'd pay in cash?  Arrogant sounding, I realize, but would a thousand dollars stand in anyones way when there's a cure on the other side?  "OK, then," he said, "once all that is said and done what next?"

What next?  What next?  It still hadn't sunk in that I'd gotten that far.  Well, I'd need the Liberation procedure of course.  "And no one 'round here is gonna do that," the doc explained.  I questioned why he couldn't step up and be the first in the area?  Silence.  Getting my second wind I proclaimed I'd cross that bridge when I got to it, I'd even cross it overseas if need be. 

Sensing my excitement and maybe even picking up on a bit of my enthusiasm he promised to do some research of his own.  Skeptics are thinking, Angela, you dummy, he's simply putting you off.  Maybe, but he did say if I hadn't heard back from him by Monday to call him.  Oh, and I will. 

I left his office disappointed I'd not said enough.  I wanted an order for testing in hand.  A plane ticket even!  Something.  Anything.  I wanted a mission like the Wizard had give Dorothy.

Snuggling with Gooch on the couch later that afternoon it began to come clear.  Sunday's message:  wait!  A door will open.  Relax, already!  Stress can cause exacerbations, silly girl!  I took time off my research bender to watch 'Lost.'  Ever notice the Biblical parallels becoming more prevalent?  But that's a blog for another day.

Guess what?  A door opened.  Wednesday morning an e-mail from a study in New York arrived.  They are wanting more info from me, details, hmmmmm.  So I'm gonna have to call my doc back to get a MRI scheduled. 

So if he's at least half as competitive as I am he won't want to be one upped.   It could be that this slightly opened door could come swinging all the way open.  There's a cure I tell you.  I can see it now.  I can almost even {stretch} {stretch} reach it.

Listen up Sportsfans: Off to the neuro (aka Pt. 3)

The Disney Vacation commercial where the parents exclaim from bed that they are too excited to sleep came to mind Sunday night.  And I'm not even sure my head touched the pillow Monday night.


I do know however that my boys left for camping, my mom came by, and a dear friend called me Monday.  Did the boys pack proper?  When did they leave?  What did my mom need?  What did we talk about?  Did I call Angel back?  Has the pup been out to potty?


My neuro appt. was for 1:15 Tuesday and I thought it would never get here.  Research crowded the narrow space between my ears until I thought my head would explode.  Try and stump me on a question about CCSVI, I dare ya! 


I had rehearsed and ran through countless variations of how things would go vs. how I wished they would go, etc.  Finally during the ride over (on which Jason didn't drive nearly fast enough for my liking), I had an aforementioned forehead smacking moment.  Give it to God!


My mom cautioned not to be dissappointed.  She and Jason warned against anger.  Mad or not I needed refills.  Hmmmpf!  Bite me, I'd thought.  I hoped biting wouldn't be neccessary and alas, $ used for bail may be needed to go overseas.


So we get there, and giving it to God, I decide just to let the appt. run its course.  It could be my young doctor may even suggest this new found vascular cure to me.  For the first time in days though still nervous, I felt a reassuring calm come over me.  As I began to share this revelation with my hubby, Wham!


Jason warned, again, of my behavior.  This time he told me not to storm out of here when the doc makes me mad because I need meds.  WTF?  I couldn't storm if my life depended on it.  And what's with this 'when' he upsets me?  Geeesh!


Enter the doc: "How are you doing?" he asked.  Knowing there was not enough time in the day to answer him honestly I answered generically.  He followed by checking my chart and asking if there'd been anything new since my last visit.  What a great segway to this CCSVI phenomenon.


Silence followed with Jason and I sharing a glance amid hopefully raised eyebrows.  Then doc broke the silence questioning of new exacerbations, etc.  Strike one, I'd screamed in my inner dialog.  "Nothin' new," I replied. 


He continued that there wasn't anything really new on the drug front either.  Another segway opportunity.  Silence.  Strike two!  Then he left the room to see about a new med for fatigue.  I'd imagine by this point Jason was wondering if my body had been taken over by some form of alien?!


I couldn't let there be a strike three so upon his return to the room while writing out orders for bloodwork I gripped the bat hard with, "Before we go can you tell us anything about CCSVI?"  (Pause)  "Oh, the drug?" he responded.


"No, the condition Dr. Zamboni from Italy has found may be the actual cause of MS?" I replied symbolically raring my bat back with all I had.  A nano second of intimidation ran up my spine as he began explaining, he had indeed heard of it but was skeptical. 


Blah, blah, blah.  It was a heck of a curve ball headed at me but alas, SMACK, I swung hard and made contact.  Jason said I kept my rantings together, made perfect sense and even made the doc smile at one point.  Whether or not I hit a foul, a double or it went out of the park remains to be seen.


Could that be cheering I hear from the grandstand?  (To Be Continued)

Ham, Beans, and Revelations (aka Pt. 2)

I was too pumped to sleep. Sunday morning came fast. It would have been easy to sleep in, (we did miss Sunday School), but I longed for God's presence. I believe He is with me always but even more so when I enter His home. More so still at Point Township Church of the Nazarene. God is good!

That particular Sunday the pastor (my uncle, btw) preached on crossroads. Exactly what I'd needed. How could he have known? Hmmmm? The message said to give your life to God. Sure I'm paraphrasing here, but, if you come to a crossroads just chill out. Wait! Allow God to nudge you in whatever direction, His direction. Praise God!

And Sharon just happened to sing "The Lighthouse" to which I sang along with every word. I hadn't heard it in eons, but it all came rushing back to me. The days of traveling with The Kings Messengers. I began to cry remembering even how I had felt back then. At that very moment I experienced somewhat of a break through if you will.

In short, I was coming to the realization, God-willing, I might could have my old self back. And as luck/coincidence/Divine Intervention (you decide) would have it I just so happened to have an appointment with my neurologist approaching.

Sidenote: Had it not been for needing scrips for refills I would have cancelled this appointment earlier in the week, before the new hope. At my last appointment there was nothing new and my symptoms were only gradually worsening, so we did nothing but acknowledge that although steadily progressing my deterioration was only gradual.

Yeah! Was I suppose to celebrate? Not another Madonna reference, c'mon?! Hardly! I left my previous neuro appointment discouraged only to swing by my family doc with my mom the next week to have him reassure me (yes, I'm attempting sarcasm), "Well, hon, you have MS." Duh! Like I of all people didn't know?! I have been becoming more and more aware of my situation each day since my diagnosis, thank you very much sir! My momma taught me to be polite.

To explain, I pass more and more on things my two kiddos would probably love to take part in. Depth perception issues and an extemely heavy right leg hinder my driving. So I fail at being even a drop off mom.

With various family members help it wasn't until just this past summer the boys took swimming lessons. What kind of loser mom does that make me? At 9 and 6 they still struggle with 2 wheelers cause their momma can't go out and get hot. And even when weather allows I don't have the strength or coordination to run alongside them.

We have fewer and fewer friends because we (I mean I) just can't go here or do that or whatever it is friends do to maintain friends. And going anywhere without Jason terrifies me. He truly is my protector. Although Amelia actually picked me up at a wedding I fell at (in her maid of honor gown no less), and I'm sure she'd do it again, my Jason is always there. He's so good he can even catch me before I fall.

So where were we? At church? Praising God, not Jason, right? OK, off to Aunt Ann's for a phenomenal lunch of ham and beans then to my couch and laptop. Research til my eyes ached.

Monday was more of the same complete with forehead smacking moments wondering why simple, obvious correlations hadn't been made sooner. I feel robbed of 10 years. I'm sure Jason must too, and my poor boys - now that's a horse of a different color. Having never met the real me, at least they don't know what they're missing . . .

(Pt. 3 coming soon to a computer near you)

Wednesday, March 24, 2010


Dropping my little men off at their grandparents' last weekend began an onslaught of what-ifs and, get this people, HOPE! It all began with my father-in-law asking me if I'd heard about a doc curing his wife's MS. WTF, I'd thought, and although I had appreciated his concern for me - I dismissed it!

Off I went on another shopping expedition with my wonderful, loving, devoted, fabulous husband who now always drops me off at the door and pushes me in a wheelchair. Surely exhausted upon our departure he will then go get the truck to pick me up at the door. During most adventures, as I've come to call them never sure how they'll wind up, I opt to remain in the truck.

But, I'm getting off subject - that happens in MS. During shopping, as some old lady in a motorized scooter scowled at me for being in a wheelchair, I decided I'd at the very least get on the internet to see what in the world Kenny had been talking about. Once home, with Jason's continued nudging, I looked around a bit - admittedly still skeptical.

Reading, reading, reading. It's hard for MSers to read anything. Words swim. Comprehension, well, what is comprehension? On to the videos . . . WOW! Of all MS problems to show miraculously fixed CTV showed a guy dragging his right leg. Ever seen me walk? Ah, huh! After treatment this dude can mall walk. Tears came now, hard and fast!

More interviews included patients unable to remember what it was like to have MS. A doubting Thomas myself I find forgetting this crap hard to believe as it has taken so much of who I used to be away.

People, I used to play basketball, volleyball, run track, lift weights, show horses and participate in 4-H. I was on academic teams, honor roll, and an editor of my high school and even college newspapers. I was in choir and plays. I attended every school dance and 5 different proms all with Bobby Brown's dance ethic. My dad used to say, "Girl, you got the world by the balls!"

Again, I digress. Back to the timeline already . . . I grew a bit optimistic but still wasn't 'there' until we made a late night trip to Aunt Ann's. She was having a rough night and needed her J. For those who don't know I will tell you that she has just been through one of the toughest years of her life. I am so proud of how she has made it through and continues fighting forward each day. My instant admiration for her has grown through this into an even stronger love and respect.

Anyways, talking to this wisest of women it became clear as she said, "Life is too short." Months before she too had mentioned a new treatment she'd heard of. Again, I dismissed her words fearing my MS worsening with any treatment change.

Get this, sports fans - we spent the ride home making plans for all we wanted to do post cure. Jason even suggested I could get a job. HUH? A side note: Yeh, I used to work! At one time I even made more mulah than Jason. I received my college degree (just short of two degrees) in 4yrs. time working the entire time. I remained working full-time after graduation until my official diagnosis in 2000. So there!

(To Be Continued) with ham, beans and revelation . . .

Who's That Girl: Story of a MS Cure

What's this? First electricity and now a place to write your inner most thoughts and feelings?! What will they come up with next? I'm gonna love this and you, my faithful friends, are soon to be supplied with endless blathering.

Time spent on your thrown is guaranteed to be shortened with only my words to pass time. Feel free to print my posts too, killing two bathroom birds, if you will! Having fun yet? I am. Jason's been wanting me to start a blog for awhile, so, with a cure on the horizon - what better time than now?

Join us on our journey . . .

The Journey begins!

After a less than stellar visit to Ang's neurologist we are off on our journey. We have spent many many hours looking thru the posts on-line and have made contact with a couple of vascular groups willing to talk about CCSVI.