Wow! Have I got alot of splainin' to do Lucy! So much has happened since I last blogged. Major ups and downs. So have a seat and buckle up. This could be a bumpy ride. And remember to keep your hands and feet inside the car at all times. We will not be responsible for the loss or damage of any valuables. Yours truly, The Management. I've often wondered if they considered children valuables. Huh? Only the intro paragraph and already I'm off track.
Where'd I leave ya? Early to church on Sunday? Dominatrix walker-free Monday? Awww, yes! Sore as hell Tuesday. School about to start, if it were a couple of years ago back my freshman year in high school I'd have been attending volleyball two-a-days about now. They were monsterously tuff. And I'd come home so sore. Well. After my weekend and then my belligerent attempt at going walker free- wow! I felt like, pooooo.
Kristen? You still readin'? You know. Awww, those were the days. I'd come home and flop down on the floor beneath the ceiling fan in the living room. Dad would be in his recliner and say, "This is good for ya!" And with that my teeth would clench in anger and I'd think to myself, 'Yeh, right!' Grrrrr! But why be mad at Dad? It was Coach Tucker that needed a good beating! Anyways, where'd my point go? I WAS SORE.
So sore there was nothin' to do but mess around on the internet. That's all I ever do anyways, right? What was I bitchin' about? On Facebook for a bit and my angst turned to hope. Huh? What had happened? Had it been Ryan's RSVP to the Fall Festival? Nah. It was appearing as though maybe a dam was starting to break in our CCSVI War. First up, some governmental break thru in Canada. Yay, for all my new Canadian friends!
And what's this? Before I could dive any further into the details of it all I got a message from Tommy - a new northern Indiana friend of mine also suffering from MS. He'd had a lead on a doc in South Bend and although I admit I hadn't put much faith in it at first (as newbie docs don't thrill me) . . . he already had an appointment for testing and treatment. Insurance was payin' and all it would cost him he'd said was a tank of gas. Wow! That was fast. I had to beg and plead with my newbie. Maybe this doc wasn't a newbie after all. Hmmmmm. Interesting. And Tommy passed me the good doc's # and info. Hmmmm, indeed.
As I start to dive in and research this maverick - another new facebook friend pops on. This one from Florida. This one who's before video so reminded me of me. This one who is now walking in heels. Apparently her doc has found away around all the red tape and is gearing up to announce his triumphant return to private practice in September. Even more magical is he is testing and treating for $2,000.
What? Too good to be true right? This influx of info was giving me a head cake. No that's not a typo. Head cakes are waaay worse than headaches, BUT not quite of migraine caliber. What up with that? Had it been God tapping me on the head to tell me I was being an idiot?
"Don't be a fool! Stay in school," He'd say. No, wait. That's Mr. T. God would prolly say, "Use thy walker!" and "Make some phone calls, for the doctors shall not come to you." So far tho, I remained skeptical of unresearched, unknown, docs and I was still ambulating assistance free - unless you count walls and furniture. Sure. I admit to being a bit hard headed. BUT, I also admit that I don't see there being a problem with that. Thus, no fixing necessary. No 12 steps to recovery plan needed here.
And then a knock at the door. A surprise visit from my sis and her kiddos to tell us all about their vacation. Indy zoo, museum and Holiday World. They even brought pictures. Looks like they had a blast. I CAN'T WAIT TIL I CAN WALK!!! My boys got excited about going just hearing of their cousins' escapades. I so wanna take 'em so many places and not be a hinderance to them all whilst there, but be able to join in on all the fun. PLEEEEAAAAASE! Ever feel like tellin' Santa that's all you'd ever want for Christmas? Ever, ever again?
Amelia and I caught up on some grown-up talk while the kiddos played a rousing game of Duck, Duck, Goose. Keep in mind . . . my Goose is quite a bit larger than the duck participants of almost equal height and weight. The whole thing made me and Gooch nervous. Poor puppy had to go in his cage to relax. He's sooo like his momma and not used to too much commotion.
Don't get me wrong tho, 'cause I immensely enjoyed their shenanigans too. And Amelia and I schooled them all on the 'reverse your direction trick' which in hindsight, considering my eldest son's tackling ability may not have been the best idea we'd ever had. But alas, no one got hurt, everyone had fun, and we'd made plans for swimming the very next day. Welllll, not me yet, but maybe. We'd just have to see. And, Baby Girl . . . thanks for the chocolate sundae too!
After they'd left it was near to impossible to get my two to calm down. The Aleve I had taken just before our guests arrival had failed to snuff out the ache (cake). Should I take another? Better not. I'll just play the role of referee a little longer 'til Jason gets home. Then to fight this headache and maybe get a jump on tomorrow's festivities, I'd hoped to go to bed early. It was just gonna be me and Gooch anyways as the guys had planned on going to KungFu. I planned on researching leads on docs during their absence - all from the comfort of my bed of course.
What's with me and all the plan making as of late? Was that a side effect of LDN? Whatever the reason, it needed to stop. I still have MS. Plan making never works out. I knew that. Geesh! The head cake worsens. Trips to the bathroom begin requiring the walker. And then one trip back I forget it. And SPLAT! This fall hits so hard - had my tongue not been safely resting behind my teeth - I surely would have bitten it off. "Snap." That my friends was the undeniable sound of teeth hitting teeth. Very unpleasant.
But what's this? Never mind about my aching chompers. All of my 200 pounds was resting on my calves. And my precious knees. Yikes! They were on fire. In agony. Yeeeeeooow! Good news: I can feel 'em. Bad news: I can feel 'em. How in the world was I gonna move 'em? After the uncontrollable cussing subsided, I reasoned, 'Was it time to call Jason?' BUT, I couldn't turn enuff to see the clock atop the mantle.
I look to Asa. He's a big boy. But was he big enuff? And as he looked back at me
with an Orth twinkle in his eye as if to say, "Hell, yeh, Ma! How dare you doubt me!" He had just carried in my fancy new walker Jason had ordered me. He moaned and groaned a little as the box was awkwardly large, but her got 'er done. Even Abe helped with guiding the box. What a dynamic duo.
My mind wandered to football. Asa Spindler clears out the entire defensive line making way for his little bro Abel Spindler to get thru and score the touchdown. "What teamwork!" the announcer will say. "Folks. You've just witnessed another Spindler Thunder and Lightening combination!" Sooo, he'd need to be in prime killing condition in just a couple of weeks. Alas, I asked him to fetch me the phone. And luckily it was nearing 5:00.
Enter Jason stage left. And the hero hoists the leading lady to her couch. And scene. After taking yet another call from work - even after 5:00 - he commences to putting my new ride together so I can break 'er in on my way to the stairs. As, get this, my old walker remained at the ready just outside the bathroom door where I'd absent-mindedly left it parked. "Pretty smart," says the husband. And ya know what? I am both pretty and smart! So I agreed.
My new Cadillac of walkers, which my hubby picked out and ordered a all on his own, was very cool. I was and remain very impressed. First and foremost it is my favorite color- PINK! Four wheels. Hand brakes with reflectors (for all the nighttime walking I do). A padded seat with back rest. And a covered storage compartment beneath the seat. Talk about 'Pimp My Ride.' All I needed was some fuzzy dice and a horn. Look out world, here I come! If I can remember . . .
A coke and two Aleve later I found myself too tired to research any docs. I was even too loopy to harvest crops. Perhaps I had taken an Aleve earlier and forgot I had. Oh well. Head on pillow I was set to get my sleep on. Then the phone rings. Whoops. Jason forgot to bring it up to me. (We're down to one cordless as the boys are especially ruff on them.) Anyways, about a minute later I hear footsteps on the stairs. Must be Jason bringin' me the phone before he leaves.
Huh? He didn't just toss it to me from the hall like normal?! Then he approaches the bed and puts his right hand on my hip, his left still clenching the phone. His eyes remind me of his eyes when he had to tell me my LIBERATION was unsuccessful. Somethin' was up for sure, BUT what? Just frickin' tell me already! The suspense may kill me. And he leads with, "Stay in bed . . ."
And follows with news they'd called an ambulance for my mother. I was given strict orders not to call my sister as she had everything under control, BUT was a bit too busy to have to field calls. Well sure, telemarketers and such, even drugged up worthless cripples calling just to chat, BUT I thought she might could handle one inquiry from her eldest sister. Ya know? Me. First born of the woman awaiting the ambulance. I dunno. Just sayin'.
As I began to sit up and stew over that order. He sheds a little more light on the situation and before leaving the room orders me to remain calm and in bed as no one needs me falling with everything else going on. Ha! My knees still wimpering in pain I couldn't have agreed more. But, ummmm, this is my Momma we're talking about. Back in the days of mobility I was a bit more involved, let's call it.
One particular night my Dad had thought he was dying. I made it from my house in Lawrence Addition to their Point Township house in a record 2 minutes. Have I mentioned how awesome my 300M is? Well, it is! And if I weren't drugged and in the middle of a damned exacerbation I betcha I could make that time again. And maybe even beat it if I got the distress call from the main floor. In Park Ridge now I'm closer to Point, but may have to take all the steps of our multi-level home into account. Nonetheless, I needed to be there.
I sat stewing. My head cake began baking. Maybe even burning. I posted a prayer request on Facebook to pass time. The response was enormous by the way and meant the world to me. I instant messaged with Shelley who'd just talked to Mom earlier in the day. And then it hit me - HARD! What if? What if they couldn't get her back from this? Jason assured me earlier they would and that I'd only get in the way if I were there. Blah, bla, bla. To hell with reason.
I make my mind up. If Jason won't hop on board and take me - I'll go my own self. Me and my 300M. Just try and stop us. I get up to get dressed. Reaching for my bra I'd thrown on the growing pile of dirty clothes earlier, the phone began to ring. Must be Amelia I'd thought. In mid stoop to reach the pile near the door towards the foot of the bed I switched gears to reach behind me for the phone on the bed.
A success! Well, mostly. My left hand grabbed the phone but the forward momentum of my body was still determined to get to the pile near the door. What's in between the two? I'm glad you asked. It's a huge old dresser with an even huger old mirror with shelves perched atop it. Gorgeous bedroom suite I got from my Mom when she moved into her smaller apartment. I'm so very proud of it. Anyways, I plowed into it as I managed miraculously to hit the talk button and say, "Hello?"
I cleared the dresser of nearly all it's contents atop it . . . including the mirror and the shelves' precious contents. Empty coke glasses had been strewn here and there. Koontz books and King's. A knick knack or two. Some change. A zip drive. And thank God - - - the mirror teetered but did not fall. Had it you may never have have been blessed with the rest of my story. That or I'd be sitting here blogging whilst dead.
And no I'm not overreacting. I too came down. My rear twisting towards the dresser as I had been reaching that direction for the phone I had the pleasure of hitting every handle of every drawer on the way down. Good thing my butt is big. Another good thing? Grandma's blanket was still there to soften my eventual meeting with the floor. Thanks again, Grandma! But had that mirror come down on me, wow, lights out . . .
So am I talking to Amelia during all this? Nope. God? Nope, tho I prolly should've been. It was Jason who had called. The entire event I had been struggling to carry on a calm, cool, collected conversation with my hubby who had just moments ago warned me against getting up. Had he heard the commotion and called to catch me in the act? Nah. Amelia had just called his cell phone with an update.
A sidenote: She called the cell instead of the house phone assuming we'd be well on our way to the hospital by now. The report had been that the ambulance took awhile as it had to come all the way from the hospital, but that they'd given her a shot and she was beginning to become a bit more responsive. A bit from what I'd wondered at the time. With this news I explain to Jason I'd already gotten fall #2 out of the way and that I was nearly dressed and on my way downstairs.
I may have fudged the truth a bit as I sat there in my p.j.s but I got dressed and conquered the stairs lickedy split. I fell a bit near the bottom of the steps when the phone I had stuck in my bra began to ring. It crashed to the tile in to two pieces still ringing. (OK, I admit I may be the one tuffest on the phones.) After making sure my seat atop the third stair up was a stable one Jason scooped up the pieces and reassembled the phone. It had been my Grandpa reporting the ambulance had just passed the house. He didn't wanna talk to me though. He told Jason just to tell me. Am I that ruff a customer people? Surely not. Plus that was a rhetorical question.
Once the boys were out of the pool, dried, and dressed, we were on our way. Jason had already called and given his parents a heads-up. So we dropped the boys at their house and headed to E-ville. Emergency parking was under construction. Way under! So we parked near the entrance and get this - walked! My Cadillac walker had a heck of a maiden voyage. Jason had tore the tags off it as he loaded it in the truck, but it still had the plastic wrap on the wheels. Makes em' shiny like a fresh coat of Armor-ALL.
Talk about a journey. We went on quite a trek. Why, pray tell? 'Cause my dear hubby didn't think I could, I guess. Again with the logistics. He wanted to get a chair for me but then we wouldn't have a walker. He thought we'd look silly with both. And all I could worry about with all the tiny crowded rooms was, would I fit even without an arsenal of large clunky assistive devices? So I tried my best to simplify the situation. Pray, step. Pray, step. Pause. Pray. Pray, step. Pray.
When we reached the waiting room full of sickly gagging and yacking my first thought was, 'Oh shit! I'm on immune suppressant!' But then as I held my breath and attempted to speed up my gait thru the ill masses I realized I had kicked the injections some time ago. Yay, me! When we'd made it to the check-in desk the nurse seated on the other side was reaching for her patient sign in clipboard. Ah-ha! As flushed and as out of breath as I may have been they may have very well been ready to admit me, but I wasn't here for me.
Room 16. Wow. That one's way back there. I think I've actually been in that exact one. Sadly I've been in many of them. But not in a good long time now. Should I thank the blood pressure meds? The inclined bed? God? Or wait! I know. Maybe my neuro's new policy not to admit MSers for steroid treatment. Ha! Anyways, we arrived and Amelia and Grandma were with her. As nurses tended to Mom I got caught up on the night's timeline.
I can't afford the rights to her story so I'll just give you the abridged version. Making no sense. Concern. Low blood sugar. Volunteer firemen. EMTs. Ambulance. Hospital. And when we arrived to the hospital all they'd done was started an IV, took some blood, and continued trying to get her level up. After all that and a meal it was still only at 82. A far cry from the 24 it had been in the beginning, but still not being higher after all they'd done was odd.
Enter the doctor. Thank goodness I was there. Ready to send her home, I added to her list of ailments her cough and her drowning spells. That's what they sound like to me anyways when she explains the episodes to me. So the good doc takes a closer listen and orders a chest x-ray and ekg. Guess what? A touch of pnemonia and possibly COPD. Sooo, she was in for antibiotics and further observation for the night. Guess what else? She was pissed!
And though my Aleve was starting to wear off, exhaustion was beginning to set in. Jason could see it 'cause he went to fetch a wheel chair without allowing for much discussion on the matter. I simply held my folded up walker on the chairs foot rest and everything went smooth as butter. And on the way home I got a frisco melt and shake. Yay, me! Home and in bed before Wednesday. Yippee!
I only thought I was sore Tuesday. Wednesday was a whole other story. Shew! The boys were still at Granny and Papaw's so I messed around on the laptop upstairs in bed for a while after Jason left for work expecting to hear from Mom or Amelia real soon. No such luck on that front, BUT on the CCSVI saga, the tide was a changin'. I had private messages and emails from several of my MS sisters and brothers. Thank you Judy, Irishbear, Tommy and Tina.
They'd heard of a doc in Indiana and thought of me. Yay! And it was the same doc Tommy was scheduled to see on Monday. Wow. So I called Jason to see what he thought as he hadn't been real fond of the Florida scenario. Strike that. He was real fond of the price tag, but just a little untrusting due to the whole too good to be true saying. And as bad as he wanted me liberated he wanted to be absolutely sure everything was on the up and up.
I continued with the details and background I'd gotten from Tommy. And I mentioned Irishbear had sent me an email saying I could have the procedure and walk a couple of blocks to see a Notre Dame football game. WHAT? Next to Notre Dame - must be a sign! Jason didn't need to hear anymore. He called them right away and left a message. Bummer. They must be gettin' swamped with calls. And his contact info was spreading like wildfire throughout our Facebook family. Please Lord don't let him get shut down. And please Lord let me get in.
Then at a little after 9 I broke down and called Amelia to see what she'd heard. Nothin'. She hadn't made any contact, nor did she have a room #. So I call and got her room # and called her room a couple times to no answer. Maybe she was down for testing. Or maybe she'd taken a cab home. Any more aggravated than she was the night before she might even be walking home at this point.
I spent the rest of my morning drifting in and out of sleep and farming. Exhaustion, I tell ya. Rough stuff. Amelia calls and I relay the # hoping maybe she' d have better luck at getting thru. Just maybe tho, if they weren't releasing her - maybe she wasn't gonna talk to us. What a mess. If you're reading this Mom, we only take you to get help because we love you. Now shape up! Checked your sugar lately? How are your crops?
Jason comes home for lunch and reports he's talked to the South Bend Doc's secretary. Yay! Says she sounds intrigued about my being a 'nothing out of the ordinary' case. She promised Jason she would present my info to the doc later that day. Wow. The ball really is rolling on this one. Or should I say we've thrown a Hail Mary. And it's a beautiful spiral, almost floating in slow motion thru the South Bend sky. Will the good doc catch it in the end zone? Stay tuned to find out.
Later on Mom finally calls me to report she's comin' home. She further explains her family doc came in to see her and had no idea why she was even there. Huh? A follow-up appointment on Friday? Great! I look forward to being there to get to the bottom of things. Me and that Lee . . . surely by now he must hate to see me comin'. Pity, really, but I do feel our love/hate relationship gets more done. Or maybe that's all in my head sorta like my disease.
The rest of my Wednesday. More sleeping. Phone answering. Caught up with "Hell's Kitchen" on hulu. Annnnnnd, guess what else? More sleepin'. Then about 7 I wake to the boys' voices in astonishment about something or the other. And Jason scurrying from room to room on the main floor.
Then two boys enter with hugs kisses and hellos and one frazzled looking handsome young man with a sack full of Mexican take-out. But why frazzled? The first words out of his mouth were, "Did Gooch come see ya this afternoon?" Puzzled, I answer, "Well, no." He continued, "Well he's been loose all afternoon . . ." And from there I'll spare you the gory details of his adventures.
Unfortunately (did I type that out loud for all to see?) both cats are still alive and enjoying toying with the trash scraps the mongrel left behind. Not his fault. Poor pup had a lonely night last night and then more of the same today. I hadn't come down for our morning feeding ritual. He was prolly starvin'. Poor pit.
After I'd devoured my supper I spent some time messaging my sister online. We got alot talked about. Mom, of course. Movies. Kids. Horse shows. School. And most important of all . . . OUR PLANS POST LIBERATION. We're gonna play volleyball together on a league somewhere or another. We'll start our own if we gotta. We're gonna roller blade downtown. Show horses world-wide. Dance like dancing queens. Awww. This list could become a massive blog all on its own. #1 on the list is of course to become Super Mom!!!
Finally the masses begin joining me upstairs. Daddy must finally be deeming it late enuff for bedtime. Both arrive with their game systems of choice in hand and nearly glued to their faces. I truly don't know how they could see to walk. The little boogers didn't even stop to pee. They turned the corner to their room. "Night, Mom." "Night, Mom." Well Lah Tee Dah! It was as if they were in a trance.
Finally all settled in Jason and I commence to grown-up talking. Hate to disappoint - it was nothing kinky. What I mean to say is he talked about his day at work and I updated him as to my Mom's settling in at home. Stuff like that when he out of the blue asks, "Did I tell you I talked to Maribeth again?" Huh? No. Do tell.
I guess Gooch had thrown him off his game with his trash-a-thon 'cause you'd have thought news regarding advances towards LIBERATION would have come even before the presentation of the delicious Mexican feast from Tequilas. Yummmm. Anyways, the news was that the doc didn't care about my failed attempt. Send on my info and let's LIBERATE this girl! Well, yeeeehaaaaw! I'm ready!
Jason would send them all they needed first thing tomorrow and I was to further research the doc and try and contact more of his previous patients. Deal? Deal! NOTRE DAME FOOTBALL!!! Wonder if I can fit in a game? Or a tour? Maybe they'd be interested in giving the Spindler Lightening and Thunder combo a tour of their campus. I'm stoked. Can you tell? LDN in and down. And I'm starting a vitamin Thursday.
Trash Day. Thank's Gooch for showing it all to us. I wondered before descending the stairs if I'd even be able to get to the couch. Luckily Jason had already picked the majority of Gooch's bounty up and re-trashed it. Honey Nut Cheerios and a huge horse pill lookin' multi-vitamin later I was back to farmin'. Must be in the genes. And the jeans.
So today is Thursday. What'd I do? Blogged. Farmed. Netflixed. (That's a new word!) And cuddled with my pup. Apparently he needs a day to recover from his adventures too. Hopefully by tomorrow we'll both be on the mend and much closer to our lazy selves. If I survive the trip to go see Doc Lee, I desperately need to take the boys to get school supplies. We'll see. One things for certain --- I'm not making any plans!
To everyone still reading, I so appreciate y'all stickin' with me. We may be nearing the finish line. Will it be in South Bend, Indiana? I've soooo got the Fighting Irish theme song stuck in my head. That's what I need - luck 'o the Irish. Maybe it's been there all along. Lovs ya!
Thursday, August 5, 2010
Monday, August 2, 2010
Day 5 LDN Update
First, the good news: only made two trips to the potty last night. And so far today, though I haven't ventured any further than the couch, the bathroom, and the back door to let out the Gooch --- here it comes --- wait for it --- NO WALKER!
I'm still not back to my pre-exacerbation MS swagger, BUT I am improving!!!
Now for the bad news . . . there is no bad news. Can we say it together now? Ready? On three. 1 - 2 - 3. "WOOOOOO HOOOOOO!" Shew! Didn't that feel good? That's all I got for ya today people. I feel like a bit of a tease. Sorry.
Here's an idea - Why not turn off your computer and go do somethin' fun, heh? Hug a family member real tight. Tell someone you love 'em. I'm serious people. You can bet your butt if I could get off mine as easily as you can get off yours . . . I'd be doin' somethin worthy of writin' about. NOW GO!
Uhhh, yeh, that's an order. And another improvement . . . from tease to dominatrix. Ha! Who knew?
I'm still not back to my pre-exacerbation MS swagger, BUT I am improving!!!
Now for the bad news . . . there is no bad news. Can we say it together now? Ready? On three. 1 - 2 - 3. "WOOOOOO HOOOOOO!" Shew! Didn't that feel good? That's all I got for ya today people. I feel like a bit of a tease. Sorry.
Here's an idea - Why not turn off your computer and go do somethin' fun, heh? Hug a family member real tight. Tell someone you love 'em. I'm serious people. You can bet your butt if I could get off mine as easily as you can get off yours . . . I'd be doin' somethin worthy of writin' about. NOW GO!
Uhhh, yeh, that's an order. And another improvement . . . from tease to dominatrix. Ha! Who knew?
Sunday, August 1, 2010
Friday, Saturday, Sunday
So what'd y'all do this weekend? You won't believe what all I did. First up, Friday night festivities. I went out. Big time. Bowling. Putt-putt. Rollerblading. Dancing. Naaaah, not really, but I did go out. Actually out. Out of the house. Can I get a wooooo hooooo? Oh, yeh!
I'd planned on taking the wheel chair, but feeling squirrely I ventured out with just my walker. We went out with our good friends Ryan and Angel to celebrate Angel's new job and although we didn't know it at the time . . . the send off of Ryan's facial hair. A tragedy really - get a little bit of ice cream in it and off it goes. *sniff, sniff* Just a sec whilst I wipe my tears . . .
Sooo, Logan's for steak and then Cold Stone Creamery for I scream, you scream, we all scream for ice cream. Yummmmmmy. I had the absolute best ice cream I think I ever had. It was cake batter ice cream mixed with chocolate chip cookie dough, fudge and whipped cream in a delicious waffle bowl dipped in chocolate. So special, I tell ya, it even had it's own name. I think they call it "All Lovin' No Oven."
A. Next to a movie perhaps? B. Or rent one and head home? C. Maybe a quick stop for pool filters? Wrongo. The answer is D. none of the above. I'd already had quite a big night for my first real outing in eons. It was all I could do to make it upstairs to bed. Took my LDN and lights out. THE END.
The came Saturday morning at 5 am. Get ready for a wooooo hooooo. I slept DRY from about 11 to 5 in the morning. Yay! Yay! Yay! Now. Say it now. "Woooooo hooooo!" Jason and I had talked on the way home the night before about how excited we were to see what improvements lie ahead. We each talked of what we hoped to see and rejoiced at what we already had. Whether it be LDN or prayer or the combination of the two . . . somethin' was workin' on me. Somethin' powerful!
Should I wake him and happily report that I slept even longer uninterrupted by urgency? Should I wake him to tell him how miraculously rested and rejuvenated I felt? Nah. I decided to let the poor boy rest. He's a gorgeous one, my husband, even in his sleep. And before I knew it I'd fallen back asleep myself. Buzzzzz. Buzzzzz. Buzzzzzz goes the alarm clock. What was it set at 6:30 for on a Saturday?
Thankfully Jason grabs for it and shut 'er off. Or so I'd thought. Minutes (which seemed like seconds) later it buzzzzzed again. Smack! That was loud. Surely he took care of it this time around. Buzzzzz. Buzzzzzz. "Jason," I remember asking, "Any reason we need to be up this morning?" "Ummmm, no," he answers amidst the buzz buzz buzzing. And still the alarm sounds. "Baby," I say a little sterner, "can you turn OFF the alarm then?" And silence.
And sleep. Until 10 o'clock when Jason awakes with a hankering for a Dean's stromboli. Huh? That's not on his diet. Anyways I decide that'd prolly be too much of a walk for me and opt to stay in bed. Jason calls his parents to invite them and see if we can retrieve the kiddos from them there. And it's a date. And stromboli does sound awfully good. I'd just ventured out with friends. What kinda mom would I be if I didn't at least give goin' out with the kiddos a try? And off we went.
Parking just by the door we'd made it in and were seated with time to spare. And then came the kiddos looking as if they'd just gotten up. Apparently they too had partied hard the night before. All kissed and hugged and reacquainted we settled in to order. And after all that, none of us ordered stromboli. But I did have a huge delicious breakfast. All I needed now was another "All Lovin' No Oven." Next?
To shop for school supplies or not to shop for school supplies? That was the question. How 'bout "NO!" What up family? You think 3 nights of LDN has cured me? Geesh?! I may look better. At least that's what you're tellin' me. But I still need my walker. And I still can't stand too long. And going too far gets me outta breath and gives me a headache. Have I mentioned when my right leg begins to spasm that it's warning me to get off it? And not listening to it equals FALLING.
So whether or not I could have pushed thru and went shopping, I opted out. Let's give this LDN a few more days time before I add over doing it to my ever growing pessimist's list of reasons I'm not getting better faster. So the rest of the day I spent on the couch. Farmville, Facebook, spider solitaire, Netflix, etc. The most important part of the afternoon and evening being - REST!!!
P.S. I discovered about 1:00 or so I'd forgotten to take my Provigil. A wonderful little pill that if I fail to take I suffer the rest of the day for. And at times, sleep the rest of the day because of. Anyways, I'd forgotten again when I'd got home. Then at nearly three Jason catchin' me lookin' at the clock asks, "Did you take your Provigil?" Wellllll, nah. But it was kinda late now to take a pill that works to keep me up all day. I hadn't fallen asleep thus far so I opted out entirely secretly hoping for an early bed time.
And I made it. Awake alllll day w/out prescription assistance. And in bed by 9:30, so wish granted. Anytime before 10 around the Spindler house is considered early. LDN in and swallowed, but hold up a tic. I was cooooold. Brrrrrrrr. "Can I get another blanket, baby?" Ask and ye shall receive. I was awarded the blanket of all blankets. One made by Jason's grandma that is so incredibly warm it's even heavy to lift. I haven't even been able to fold it myself for years now due to it's massive weight. Awwww, thanks! This would warm me up for sure. Thank you, Baby! And thank you, Grandma!
But then at 1:30, I woke up having to PEEEEE. BAAAAAD. And I was HOT. And I couldn't hardly move. I nearly went into panic mode. Getting my arms free to lift my upper body I realized it was the blanket holding me hostage. I grabbed it with both hands and slung it off of me hard enuff I'd thought it should've smacked the far wall of the bedroom. Alas, it mad it just off my right leg. And once it was free the momentum of it plus my upper body thrust my left to freedom as well. Then wobbly as a toddler I made it to the potty.
Did I get a star on my toddler potty training chart? Nope. But I should've. Anyways, I toddled back to bed knowing some how or another I absolutely MUST remove the warmest of blankets in the entire world from my bed. But how was I to do it? I prayed for strength. And you know what I was given? Smarts. I look at Jason as I consider waking him to help and notice that he's slid down quite a bit more than usual from the head of the bed.
LIGHTBULB! Our bed is set on an incline. Gravity is welllll, gravity. And so if I sling the blanket towards the foot of the bed it may just make its way off easier than slinging it over Jason or pulling it to the floor on my side thus making for a future immovable road block. I gave the downward slippery slope theory a go and off, off, off she went. Had Grandma been there helping? Or maybe God Himself? Surely not as He has way more important prayers to tend to, but still I thank and praise Him. He saved me that night. I'm sure of it.
The rest of the night I spent coverless. And on one of my many bathroom trips I even stopped long enuff to put my hair up I was so hot. As I cooled down my urgency slacked and I found myself getting to stay in bed longer between trips. NOTE TO SELF (and Jason): Suffer thru the chills. No more blankets. Especially Grandma's. So two steps forward, one step back. Soooo my fault. I know not to get too hot. I know not to miss my Provigil. I know not to over do no matter how well ya feel or how long it's been since you've been able to do anything. My bad.
And buzzzz, buzzzzz, buzzzz. Please don't tell me it was going off at 6:30 again. It wasn't, but it was 8:30 and I sooo didn't wanna miss church again. We'd already missed 2 in a row. I wanted to go. I needed to go. I prayed for strength again and as I was praying, guess what? I fell back asleep. Then at quarter after 9, I wake to see Jason reading something or other off his phone. I say, "You promised you wouldn't let me miss this morning, Baby," as I get up and make my way yet again to the commode.
His reply was that we hadn't missed anything yet, but we prolly would. I hurry out of the bathroom to my closet and grab some clothes. All the while praying, please Lord let me make it. Then narrowly missing a crash on the floor, I flop on the edge of the bed to better reach my underwear drawer. And Jason asks, "You're not seriosly considering still going, are ya?"
At that I reply, "Well, I sure hoped to but I'm awfully damn close to giving up." Then we sat silent. I considered dropping my clothes at my feet and flopping back in bed but first prayed that it be God's will. And then Jason spoke. And as wretched of words as they may have been I believe they came from God as they were exactly what I'd needed to hear to get me on my way.
"There's no way we're gonna make it now," he said. Well, thank you Jason. And thank you, God! They both know all too well not to tell an Orth she can't do something. Grrrrrrrrr! With that I started dressing right there. Ordered the boys up and to hurry getting ready. We were having a hurry up and don't miss the bus to school drill. Whoops! Y'all missed brushin' your teeth. Get back up here and brush while Daddy showers.
Boys all ready and Daddy dryin' off I order the boys to the kitchen to pick out breakfast they can take in the truck. Then once Jason is dressed I order him to let the dog out, get my Provigil and find my shoes whilst I finish dressing and brush my pearly whites. So shoes, pill, and a coke in hand Jason follows the boys to the truck but waits to hold the door for 'ol crip. He's soooo a keeper. Hands off ladies or I'll beat you with my walker!
And we're off. And early. Yay! Better yet, how's about a wooooo hooooo? Great service. Great song selections. The first being about Jesus lifting me. And then victory in Jesus. And one of my dad's all time favorites, even played at his funeral - "In the Garden." Then just when I thought I'd miraculously made it thru tear free Andrew gets behind the piano.
This gorgeous, uber talented young man just happens to be a cousin of mine but I promise you dear readers I am in no way bias and/or partial. He sings an original him and a friend wrote a few years back. Beautiful!!! I almost come undone and then he dedicates it to his grandma Wanda who just so happens to be my grandma too. And just so happens to be sitting right next to me - also losing it.
Please let that be it Andrew. No such luck. He does another. And I'll be a monkey's uncle if every last word of that song hadn't been meant for me. It talked about thinking you were really somethin' but realizing that you couldn't even walk without holding His hand. I can't even type about it all these hours later without tearing up. I'll have to get the words for it and share 'em with ya later. Anyways, thank you Andrew. YOU ROCK!
He was a hard act to follow, but Uncle Scott held his own. He always does. He taught from Luke Chapter 19, I think it was. A bit about Zaccheus. Remember the song about him being a wee little man and climbing a sycamore tree? Anyways, the message was good and the alter call fruitful. Can I get an, Amen? But I feel like my message is getting a bit long so I gotta move on . . .
Nearly off Bonebank Road we get a call asking us to Dean's for lunch. Well sure. Why not? Maybe we'd have our strombolis today. And the parking near the door? Taken. On the street nearest the door? Taken. On the corner nearly a block from the door? It was ours for the taking. Yippee! So up the street we went. And the average person may not realize it but that particular street does have a gradual incline towards where it meets Main Street. I kid you not. It is there. And it is real.
We used the entrance near the bar that we hardly ever use and thankfully so as my right leg had been locked in a spasm since well before the entrance. Suffice it to say my warning was about to run out. So the first uninhabited table I grabbed a chair and flounced down in it. The family that had stayed behind with me offered to go get the family already settled in at our regular table. I said, "Nah, I've got only one thing on my mind right now, and it's the bathroom."
I didn't know which warning to heed. That of my leg or my bladder. Eventually the bladder won out and thankfully my leg, not wanting to get drenched, decided to cooperate. Dear right leg, Thank you! OXOXO, Me And to the table when asked what I wanted to order . . . all I could think of was bed rest. Too exhausted to lift a strom I ordered a burger. But how was I gonna make it outta there?
Good thing we're tight with the owners. Hehehehe. Thank you, Uncle Bud for movin' your truck. Easy out and home. And leg not shaking I proclaim, "I'm gonna try this without the walker." And before I could field any protests I was out the door. Truck, truck, truck, lighthouse, chair, table, chair, door, banister, wall, wall, wall, wall, table, shelf, sink and toilet. Can I get a woooooo hoooooo?
And then to the couch touching the wall only twice. Wow. And, say it with me now, "Wooooo hooooo!" So the rest of the afternoon I spent maxin' and relaxin'. And the evening? Much of the same. Now I'm off to bed. Sheet only. And I'm soooo excited to see what tomorrow will bring. Could it be a stronger bladder? Better walking? More energy? Total world domination?
Pray with me, for all those, won't you? I promise that everyone with MS will be LIBERATED should the world domination prayer be answered. But seriously, any of the others would be great too. So keep prayin' y'all. And I'll keep ya posted. Love ya. OXOXOXO
I'd planned on taking the wheel chair, but feeling squirrely I ventured out with just my walker. We went out with our good friends Ryan and Angel to celebrate Angel's new job and although we didn't know it at the time . . . the send off of Ryan's facial hair. A tragedy really - get a little bit of ice cream in it and off it goes. *sniff, sniff* Just a sec whilst I wipe my tears . . .
Sooo, Logan's for steak and then Cold Stone Creamery for I scream, you scream, we all scream for ice cream. Yummmmmmy. I had the absolute best ice cream I think I ever had. It was cake batter ice cream mixed with chocolate chip cookie dough, fudge and whipped cream in a delicious waffle bowl dipped in chocolate. So special, I tell ya, it even had it's own name. I think they call it "All Lovin' No Oven."
A. Next to a movie perhaps? B. Or rent one and head home? C. Maybe a quick stop for pool filters? Wrongo. The answer is D. none of the above. I'd already had quite a big night for my first real outing in eons. It was all I could do to make it upstairs to bed. Took my LDN and lights out. THE END.
The came Saturday morning at 5 am. Get ready for a wooooo hooooo. I slept DRY from about 11 to 5 in the morning. Yay! Yay! Yay! Now. Say it now. "Woooooo hooooo!" Jason and I had talked on the way home the night before about how excited we were to see what improvements lie ahead. We each talked of what we hoped to see and rejoiced at what we already had. Whether it be LDN or prayer or the combination of the two . . . somethin' was workin' on me. Somethin' powerful!
Should I wake him and happily report that I slept even longer uninterrupted by urgency? Should I wake him to tell him how miraculously rested and rejuvenated I felt? Nah. I decided to let the poor boy rest. He's a gorgeous one, my husband, even in his sleep. And before I knew it I'd fallen back asleep myself. Buzzzzz. Buzzzzz. Buzzzzzz goes the alarm clock. What was it set at 6:30 for on a Saturday?
Thankfully Jason grabs for it and shut 'er off. Or so I'd thought. Minutes (which seemed like seconds) later it buzzzzzed again. Smack! That was loud. Surely he took care of it this time around. Buzzzzz. Buzzzzzz. "Jason," I remember asking, "Any reason we need to be up this morning?" "Ummmm, no," he answers amidst the buzz buzz buzzing. And still the alarm sounds. "Baby," I say a little sterner, "can you turn OFF the alarm then?" And silence.
And sleep. Until 10 o'clock when Jason awakes with a hankering for a Dean's stromboli. Huh? That's not on his diet. Anyways I decide that'd prolly be too much of a walk for me and opt to stay in bed. Jason calls his parents to invite them and see if we can retrieve the kiddos from them there. And it's a date. And stromboli does sound awfully good. I'd just ventured out with friends. What kinda mom would I be if I didn't at least give goin' out with the kiddos a try? And off we went.
Parking just by the door we'd made it in and were seated with time to spare. And then came the kiddos looking as if they'd just gotten up. Apparently they too had partied hard the night before. All kissed and hugged and reacquainted we settled in to order. And after all that, none of us ordered stromboli. But I did have a huge delicious breakfast. All I needed now was another "All Lovin' No Oven." Next?
To shop for school supplies or not to shop for school supplies? That was the question. How 'bout "NO!" What up family? You think 3 nights of LDN has cured me? Geesh?! I may look better. At least that's what you're tellin' me. But I still need my walker. And I still can't stand too long. And going too far gets me outta breath and gives me a headache. Have I mentioned when my right leg begins to spasm that it's warning me to get off it? And not listening to it equals FALLING.
So whether or not I could have pushed thru and went shopping, I opted out. Let's give this LDN a few more days time before I add over doing it to my ever growing pessimist's list of reasons I'm not getting better faster. So the rest of the day I spent on the couch. Farmville, Facebook, spider solitaire, Netflix, etc. The most important part of the afternoon and evening being - REST!!!
P.S. I discovered about 1:00 or so I'd forgotten to take my Provigil. A wonderful little pill that if I fail to take I suffer the rest of the day for. And at times, sleep the rest of the day because of. Anyways, I'd forgotten again when I'd got home. Then at nearly three Jason catchin' me lookin' at the clock asks, "Did you take your Provigil?" Wellllll, nah. But it was kinda late now to take a pill that works to keep me up all day. I hadn't fallen asleep thus far so I opted out entirely secretly hoping for an early bed time.
And I made it. Awake alllll day w/out prescription assistance. And in bed by 9:30, so wish granted. Anytime before 10 around the Spindler house is considered early. LDN in and swallowed, but hold up a tic. I was cooooold. Brrrrrrrr. "Can I get another blanket, baby?" Ask and ye shall receive. I was awarded the blanket of all blankets. One made by Jason's grandma that is so incredibly warm it's even heavy to lift. I haven't even been able to fold it myself for years now due to it's massive weight. Awwww, thanks! This would warm me up for sure. Thank you, Baby! And thank you, Grandma!
But then at 1:30, I woke up having to PEEEEE. BAAAAAD. And I was HOT. And I couldn't hardly move. I nearly went into panic mode. Getting my arms free to lift my upper body I realized it was the blanket holding me hostage. I grabbed it with both hands and slung it off of me hard enuff I'd thought it should've smacked the far wall of the bedroom. Alas, it mad it just off my right leg. And once it was free the momentum of it plus my upper body thrust my left to freedom as well. Then wobbly as a toddler I made it to the potty.
Did I get a star on my toddler potty training chart? Nope. But I should've. Anyways, I toddled back to bed knowing some how or another I absolutely MUST remove the warmest of blankets in the entire world from my bed. But how was I to do it? I prayed for strength. And you know what I was given? Smarts. I look at Jason as I consider waking him to help and notice that he's slid down quite a bit more than usual from the head of the bed.
LIGHTBULB! Our bed is set on an incline. Gravity is welllll, gravity. And so if I sling the blanket towards the foot of the bed it may just make its way off easier than slinging it over Jason or pulling it to the floor on my side thus making for a future immovable road block. I gave the downward slippery slope theory a go and off, off, off she went. Had Grandma been there helping? Or maybe God Himself? Surely not as He has way more important prayers to tend to, but still I thank and praise Him. He saved me that night. I'm sure of it.
The rest of the night I spent coverless. And on one of my many bathroom trips I even stopped long enuff to put my hair up I was so hot. As I cooled down my urgency slacked and I found myself getting to stay in bed longer between trips. NOTE TO SELF (and Jason): Suffer thru the chills. No more blankets. Especially Grandma's. So two steps forward, one step back. Soooo my fault. I know not to get too hot. I know not to miss my Provigil. I know not to over do no matter how well ya feel or how long it's been since you've been able to do anything. My bad.
And buzzzz, buzzzzz, buzzzz. Please don't tell me it was going off at 6:30 again. It wasn't, but it was 8:30 and I sooo didn't wanna miss church again. We'd already missed 2 in a row. I wanted to go. I needed to go. I prayed for strength again and as I was praying, guess what? I fell back asleep. Then at quarter after 9, I wake to see Jason reading something or other off his phone. I say, "You promised you wouldn't let me miss this morning, Baby," as I get up and make my way yet again to the commode.
His reply was that we hadn't missed anything yet, but we prolly would. I hurry out of the bathroom to my closet and grab some clothes. All the while praying, please Lord let me make it. Then narrowly missing a crash on the floor, I flop on the edge of the bed to better reach my underwear drawer. And Jason asks, "You're not seriosly considering still going, are ya?"
At that I reply, "Well, I sure hoped to but I'm awfully damn close to giving up." Then we sat silent. I considered dropping my clothes at my feet and flopping back in bed but first prayed that it be God's will. And then Jason spoke. And as wretched of words as they may have been I believe they came from God as they were exactly what I'd needed to hear to get me on my way.
"There's no way we're gonna make it now," he said. Well, thank you Jason. And thank you, God! They both know all too well not to tell an Orth she can't do something. Grrrrrrrrr! With that I started dressing right there. Ordered the boys up and to hurry getting ready. We were having a hurry up and don't miss the bus to school drill. Whoops! Y'all missed brushin' your teeth. Get back up here and brush while Daddy showers.
Boys all ready and Daddy dryin' off I order the boys to the kitchen to pick out breakfast they can take in the truck. Then once Jason is dressed I order him to let the dog out, get my Provigil and find my shoes whilst I finish dressing and brush my pearly whites. So shoes, pill, and a coke in hand Jason follows the boys to the truck but waits to hold the door for 'ol crip. He's soooo a keeper. Hands off ladies or I'll beat you with my walker!
And we're off. And early. Yay! Better yet, how's about a wooooo hooooo? Great service. Great song selections. The first being about Jesus lifting me. And then victory in Jesus. And one of my dad's all time favorites, even played at his funeral - "In the Garden." Then just when I thought I'd miraculously made it thru tear free Andrew gets behind the piano.
This gorgeous, uber talented young man just happens to be a cousin of mine but I promise you dear readers I am in no way bias and/or partial. He sings an original him and a friend wrote a few years back. Beautiful!!! I almost come undone and then he dedicates it to his grandma Wanda who just so happens to be my grandma too. And just so happens to be sitting right next to me - also losing it.
Please let that be it Andrew. No such luck. He does another. And I'll be a monkey's uncle if every last word of that song hadn't been meant for me. It talked about thinking you were really somethin' but realizing that you couldn't even walk without holding His hand. I can't even type about it all these hours later without tearing up. I'll have to get the words for it and share 'em with ya later. Anyways, thank you Andrew. YOU ROCK!
He was a hard act to follow, but Uncle Scott held his own. He always does. He taught from Luke Chapter 19, I think it was. A bit about Zaccheus. Remember the song about him being a wee little man and climbing a sycamore tree? Anyways, the message was good and the alter call fruitful. Can I get an, Amen? But I feel like my message is getting a bit long so I gotta move on . . .
Nearly off Bonebank Road we get a call asking us to Dean's for lunch. Well sure. Why not? Maybe we'd have our strombolis today. And the parking near the door? Taken. On the street nearest the door? Taken. On the corner nearly a block from the door? It was ours for the taking. Yippee! So up the street we went. And the average person may not realize it but that particular street does have a gradual incline towards where it meets Main Street. I kid you not. It is there. And it is real.
We used the entrance near the bar that we hardly ever use and thankfully so as my right leg had been locked in a spasm since well before the entrance. Suffice it to say my warning was about to run out. So the first uninhabited table I grabbed a chair and flounced down in it. The family that had stayed behind with me offered to go get the family already settled in at our regular table. I said, "Nah, I've got only one thing on my mind right now, and it's the bathroom."
I didn't know which warning to heed. That of my leg or my bladder. Eventually the bladder won out and thankfully my leg, not wanting to get drenched, decided to cooperate. Dear right leg, Thank you! OXOXO, Me And to the table when asked what I wanted to order . . . all I could think of was bed rest. Too exhausted to lift a strom I ordered a burger. But how was I gonna make it outta there?
Good thing we're tight with the owners. Hehehehe. Thank you, Uncle Bud for movin' your truck. Easy out and home. And leg not shaking I proclaim, "I'm gonna try this without the walker." And before I could field any protests I was out the door. Truck, truck, truck, lighthouse, chair, table, chair, door, banister, wall, wall, wall, wall, table, shelf, sink and toilet. Can I get a woooooo hoooooo?
And then to the couch touching the wall only twice. Wow. And, say it with me now, "Wooooo hooooo!" So the rest of the afternoon I spent maxin' and relaxin'. And the evening? Much of the same. Now I'm off to bed. Sheet only. And I'm soooo excited to see what tomorrow will bring. Could it be a stronger bladder? Better walking? More energy? Total world domination?
Pray with me, for all those, won't you? I promise that everyone with MS will be LIBERATED should the world domination prayer be answered. But seriously, any of the others would be great too. So keep prayin' y'all. And I'll keep ya posted. Love ya. OXOXOXO
Friday, July 30, 2010
Too Soon To Tell
May 14, 2010 - The day after my birthday I underwent my failed LIBERATION.
July 28, 2010 - The day after my sister's birthday I began taking LDN.
So Jason asks what I'm planning on doing the day after his birthday . . .
August 13, 2010 - The day after my hubby's birthday, wellll, it's too soon to tell.
I hope, using words of my Dad's, that by then, I'm "kickin' ass and takin' names!"
Enuff with the intros already. I got news. GOOD NEWS. First on the LDN front, I think it may be workin'. The first night I took it Jason and I were a bundle of nerves. Each of the 8 times I was up going to the bathroom Jason asked me if I was okay. Bless his soul, poor guy didn't rest worth a darn. Having grown used to my frequent potty trips the only difference this night was Jason's participation. Usually my comings and goings don't warrant anything besides the occasional sleepy grunt of recognition that perhaps I'd been too noisy.
I did have a bizarro dream but nothing scary. I dreamt I was at a huge CCSVI summit. Nothing weird about that as Dr. Sclafani's symposium was happily fresh in my mind. The weird part was I was there along with all the big names and everybody knew everybody except for me. All the Denises and Judys were there. And Jeanine, Yvonne, Carol, Tessa, Diana, Alice, Brenda, Irishbear, Paul, Tina, Kathleen, Marsha, Ken, Sheilah, Lee, Gina, Kevane, Lori, Patricia, Tim, Janet, Dawn, Anna, Chris and all of TEAM HUBBARD.
I don't mean to leave anybody out, 'cause EVERYBODY was there. Even the docs were there in droves. Zamboni, Sclafani, Bonn, and others. Big names. Little names. And even some with no names . . . hopefully representing those yet to join the fight. There sure was a crowd. If you're still reading, then you were there too!
There, of course, being a huge 'ol concrete walled, dirt floored, arena I used to show horses in in Bowling Green, Kentucky. Weirder still I spent the entire dream walking around feeling sorry for myself. Did you catch that? I said WALKING!!! That oddity aside everyone knew everyone but it was like I wasn't there. Like I was some sort of newbie. Then it dawned on me. I walked to the head of a long, long table of us all and screamed for all to hear, "You must not recognize me 'cause I'm not wearing my knee socks!" Then I woke up. I hope I wasn't really screaming.
So bizzare for sure but nothing out of the ordinary for me. Just last week I dreamt I was walking from volleyball practice in the main boys' basketball gym at my high school out to the parking lot. Once there I didn't know which of my many cars to look for. I reasoned it should be my 1987 Cavalier as that's what I drove in high school. But it wasn't there. Had I parked somewhere else? Nah. I always parked in that lot. Maybe my '94 Camaro I'd bought while in college. Nope.
As I continued to WALK the football field sized lot back and forth I searched for all the other cars I at one time or another owned. The Blazer, the Jeep? Nope. My current car then, of course. It had to be my inferno red 300M. Quite the head turner, I can't have overlooked that beauty. And then stereo blaring and top down (I don't even think they make a convertible version yet) comes my Mom and Dad in a brand new yellow Camaro with black stripes.
Hold on to your hats dear readers! Dad hops outta the car jigs over to the passenger side to get in behind Mom, shrugs his shoulders and says, "You lookin' for this?" Ahhhhh, yeh! I guess so. And DAMNIT, I WAKE UP. As much as I am a fan of Camaros and would've loved to drive it -- my Dad passed away in April '05 and I sooooo would've ran, YES RAN (it's my dream damnit), to give him a hug. I miss him still - everyday. And apparently a couple of old cars of mine and high school sports. But I digress. Point is, vivid, bizzaro dreams - nothing new.
Thursday, July 29, 2010. My first day after having taken LDN. Side effects - 0. Improvements - 0. Another fail? Not hardly. Perhaps I was gonna be one of those that it would take awhile to effect. Plus I prolly still had roids floatin' about my system somewhere or another. And I heard they may work against each other or cancel each other out.
Leg still dead to the world. Can't lift my drop foot at all. A better name for drop foot -- dead foot. Even resting with my feet up - can't get foot to straighten or lift back towards me. Anyways, I wasn't givin' up. I just hoped Jason would rest better on LDN night #2, let's call it. And he did. And guess who else did? Me me me me me! You sittin' down?
I pottied at 10:30. Same 'ol, same 'ol. Neurogenic bladder not wanting to empty. Blah, bla, bla. I sit awhile as always and try my best. Then I return to bed to work on my farm in Farmville, knowing that within 10 -20 minutes I'd need to return for my follow-up visit. Hehehe. To empty the ummm, 'residual' I think is what my urologist calls it. No biggie. Simply routine by this point. Time flies. Before I knew it I expanded and rearranged my entire farm, played scrabble and caught up on an entire days worth of posts. It was nearing midnight.
Huh? Jason sleepily asks, "You gonna turn your light out?" Well, yeh! No urges. No accidents. I go once more to try and force the residual. No dice. 11:45. Still in disbelief I switch out my lap top for my DS and begin playing solitaire. Still nothing. Oh well, I'll be up again soon enuff, I thought. WHAT'S THIS??? 5:00. WHAT'S THIS? I get the urge. I wake. I go pee. I pull up dry undies. And return to a dry bed. Wooooooooo hooooooo! This is huge for me. HUGE!
I had a little trouble gettin' back to sleep as I lay there smiling ear to ear. I must say my face is a little sore this morning, but I don't mind. I might have even cried a couple tears of joy. THANK YOU GOD! THANK YOU, THANK YOU, THANK YOU! Please, please, please don't let this be a fluke. Praise the Lord! Hallelujah! Amen. I almost woke Jason up so he could celebrate with me, but another miracle occurred before I could. I fell back asleep. Yay, me!
And guess what else? Whilst sitting on the potty, astonished I'd slept uninterrupted for 5 hours, I also discovered I could ever so slightly lift and flex my drop foot. My dead foot. It's coming back to life people. A resurrection, if you will. A bonafide miracle . . . PRAISE THE LORD! Thank Him and praise Him. Amen. No where near 100%, but even the tiniest recovery at this point. Wow! A sign of life.
So it's 11 am this gorgeous Friday morning that the Lord has made. Still cripping along, BUT haven't had to go to the potty 'til now. Can I get another Woooooo hooooooo? C'mon now. Ya know ya wanna! Just sayin' it out loud you're guaranteed to crack a smile. Maybe even brighten your day and feel a bit better. Say it with me now. "Wooooooo hoooooo!" And again. "Woooooo hoooooo!"
And one more for Dr. Sclafani's symposium on treating CCSVI. Ready? "Woooooo hooooo!" Thanks for all you're doing Dr. S! Getting all those involved talking and working towards standardizing diagnostic testing and treatment and follow-up care. YAY! YOU TRULY ROCK!
As for my next attempt at LIBERATION . . . I am anxiously awaiting this super docs return. Superman returned and so shall Sclafani!!! In the meantime I'll continue with prayer and LDN. In that order. And of course, as many Woooooo hooooos as are needed. How's about a big'n for the road? "WOOOOOOO HOOOOOOO!"
July 28, 2010 - The day after my sister's birthday I began taking LDN.
So Jason asks what I'm planning on doing the day after his birthday . . .
August 13, 2010 - The day after my hubby's birthday, wellll, it's too soon to tell.
I hope, using words of my Dad's, that by then, I'm "kickin' ass and takin' names!"
Enuff with the intros already. I got news. GOOD NEWS. First on the LDN front, I think it may be workin'. The first night I took it Jason and I were a bundle of nerves. Each of the 8 times I was up going to the bathroom Jason asked me if I was okay. Bless his soul, poor guy didn't rest worth a darn. Having grown used to my frequent potty trips the only difference this night was Jason's participation. Usually my comings and goings don't warrant anything besides the occasional sleepy grunt of recognition that perhaps I'd been too noisy.
I did have a bizarro dream but nothing scary. I dreamt I was at a huge CCSVI summit. Nothing weird about that as Dr. Sclafani's symposium was happily fresh in my mind. The weird part was I was there along with all the big names and everybody knew everybody except for me. All the Denises and Judys were there. And Jeanine, Yvonne, Carol, Tessa, Diana, Alice, Brenda, Irishbear, Paul, Tina, Kathleen, Marsha, Ken, Sheilah, Lee, Gina, Kevane, Lori, Patricia, Tim, Janet, Dawn, Anna, Chris and all of TEAM HUBBARD.
I don't mean to leave anybody out, 'cause EVERYBODY was there. Even the docs were there in droves. Zamboni, Sclafani, Bonn, and others. Big names. Little names. And even some with no names . . . hopefully representing those yet to join the fight. There sure was a crowd. If you're still reading, then you were there too!
There, of course, being a huge 'ol concrete walled, dirt floored, arena I used to show horses in in Bowling Green, Kentucky. Weirder still I spent the entire dream walking around feeling sorry for myself. Did you catch that? I said WALKING!!! That oddity aside everyone knew everyone but it was like I wasn't there. Like I was some sort of newbie. Then it dawned on me. I walked to the head of a long, long table of us all and screamed for all to hear, "You must not recognize me 'cause I'm not wearing my knee socks!" Then I woke up. I hope I wasn't really screaming.
So bizzare for sure but nothing out of the ordinary for me. Just last week I dreamt I was walking from volleyball practice in the main boys' basketball gym at my high school out to the parking lot. Once there I didn't know which of my many cars to look for. I reasoned it should be my 1987 Cavalier as that's what I drove in high school. But it wasn't there. Had I parked somewhere else? Nah. I always parked in that lot. Maybe my '94 Camaro I'd bought while in college. Nope.
As I continued to WALK the football field sized lot back and forth I searched for all the other cars I at one time or another owned. The Blazer, the Jeep? Nope. My current car then, of course. It had to be my inferno red 300M. Quite the head turner, I can't have overlooked that beauty. And then stereo blaring and top down (I don't even think they make a convertible version yet) comes my Mom and Dad in a brand new yellow Camaro with black stripes.
Hold on to your hats dear readers! Dad hops outta the car jigs over to the passenger side to get in behind Mom, shrugs his shoulders and says, "You lookin' for this?" Ahhhhh, yeh! I guess so. And DAMNIT, I WAKE UP. As much as I am a fan of Camaros and would've loved to drive it -- my Dad passed away in April '05 and I sooooo would've ran, YES RAN (it's my dream damnit), to give him a hug. I miss him still - everyday. And apparently a couple of old cars of mine and high school sports. But I digress. Point is, vivid, bizzaro dreams - nothing new.
Thursday, July 29, 2010. My first day after having taken LDN. Side effects - 0. Improvements - 0. Another fail? Not hardly. Perhaps I was gonna be one of those that it would take awhile to effect. Plus I prolly still had roids floatin' about my system somewhere or another. And I heard they may work against each other or cancel each other out.
Leg still dead to the world. Can't lift my drop foot at all. A better name for drop foot -- dead foot. Even resting with my feet up - can't get foot to straighten or lift back towards me. Anyways, I wasn't givin' up. I just hoped Jason would rest better on LDN night #2, let's call it. And he did. And guess who else did? Me me me me me! You sittin' down?
I pottied at 10:30. Same 'ol, same 'ol. Neurogenic bladder not wanting to empty. Blah, bla, bla. I sit awhile as always and try my best. Then I return to bed to work on my farm in Farmville, knowing that within 10 -20 minutes I'd need to return for my follow-up visit. Hehehe. To empty the ummm, 'residual' I think is what my urologist calls it. No biggie. Simply routine by this point. Time flies. Before I knew it I expanded and rearranged my entire farm, played scrabble and caught up on an entire days worth of posts. It was nearing midnight.
Huh? Jason sleepily asks, "You gonna turn your light out?" Well, yeh! No urges. No accidents. I go once more to try and force the residual. No dice. 11:45. Still in disbelief I switch out my lap top for my DS and begin playing solitaire. Still nothing. Oh well, I'll be up again soon enuff, I thought. WHAT'S THIS??? 5:00. WHAT'S THIS? I get the urge. I wake. I go pee. I pull up dry undies. And return to a dry bed. Wooooooooo hooooooo! This is huge for me. HUGE!
I had a little trouble gettin' back to sleep as I lay there smiling ear to ear. I must say my face is a little sore this morning, but I don't mind. I might have even cried a couple tears of joy. THANK YOU GOD! THANK YOU, THANK YOU, THANK YOU! Please, please, please don't let this be a fluke. Praise the Lord! Hallelujah! Amen. I almost woke Jason up so he could celebrate with me, but another miracle occurred before I could. I fell back asleep. Yay, me!
And guess what else? Whilst sitting on the potty, astonished I'd slept uninterrupted for 5 hours, I also discovered I could ever so slightly lift and flex my drop foot. My dead foot. It's coming back to life people. A resurrection, if you will. A bonafide miracle . . . PRAISE THE LORD! Thank Him and praise Him. Amen. No where near 100%, but even the tiniest recovery at this point. Wow! A sign of life.
So it's 11 am this gorgeous Friday morning that the Lord has made. Still cripping along, BUT haven't had to go to the potty 'til now. Can I get another Woooooo hooooooo? C'mon now. Ya know ya wanna! Just sayin' it out loud you're guaranteed to crack a smile. Maybe even brighten your day and feel a bit better. Say it with me now. "Wooooooo hoooooo!" And again. "Woooooo hoooooo!"
And one more for Dr. Sclafani's symposium on treating CCSVI. Ready? "Woooooo hooooo!" Thanks for all you're doing Dr. S! Getting all those involved talking and working towards standardizing diagnostic testing and treatment and follow-up care. YAY! YOU TRULY ROCK!
As for my next attempt at LIBERATION . . . I am anxiously awaiting this super docs return. Superman returned and so shall Sclafani!!! In the meantime I'll continue with prayer and LDN. In that order. And of course, as many Woooooo hooooos as are needed. How's about a big'n for the road? "WOOOOOOO HOOOOOOO!"
Monday, July 26, 2010
Manic (Productive) Monday
Loooooooong time - no blog. Sorry. I been a bit down. Still am, but soooo much has gone on today I've gotta tell somebody about it. Catch you up first? Where'd I leave ya? Face down on the floor, . . . right? Awww, yes, it's coming back to me now.
The pool. The fall. The crawl. And more falls. Yay, me! Why weren't the steroids workin' their magic? They were makin' me hungry. They were makin' me thirsty. They were makin' me agitated. And swell, swell, swell, but still not well. I got one word for ya - b A s T a R d S ! ! !
Eventually I find myself in good 'ol Doc Lee's infamous waiting room. "What on Earth for?" I can almost hear you shouting. And I'm glad you asked. I may have mentioned in earlier posts that my feet were turning purple and that I had altogether misplaced my left ankle - well, "Dr. Lee," I explain, "I'm here 'cause I have no feeling in this here huge purple lump formerly known as my left leg."
And just to paint you a more vivid picture of the situation, the purple I speak of is more of a morbid bluish toned violet than a stunning royal plum color my dearly beloved Prince sported on his motorcycle. Still today the swelling has gone down a bit but the eery color remains. It is quite unsettling to look down and see a leg you cannot feel. A leg you do not recognize. Bizarro!
Back to the story. I went to see Lee for Jason. He's been worried about there being a blood clot. After researching clots on the internet, yippeee! I too began to worry. I've got a slew of the pre-cursors. Add that to my Ma and my Pa. Then throw in my being damn near completely sedentary and what do you have? A recipe for disaster, I tell ya. For real.
So we're hospital bound to get a doppler of my leg. I joke with Jason that we should write in that I need one of the neck too. He chuckles. He raises an eyebrow. Yeh, maybe I hadn't been joking. So what? Of all days to wind up getting an ultrasound, this was supposed to be the day I was to get one done in Atlanta. A real legit "we trained in Italy with Zamboni" scan. I wish I was there. We'd talked about taking the boys and going to the aquarium and . . .
So MS happened. Then roids. Then rescheduling. Then roids fail. I give up. Depression reigns. What good would a positive ultrasound do me anyways? Whoopity Dooooo!? Back on the table at the old local hospital, aka back to reality. The girls that took care of me were nice enuff, BUT the scan of my entire left leg took less than 5 minutes. From the groin to just behind the knee. And the discoloration and loss of feeling doesn't start until just below the knee. I'm not claiming to know more than these girls, BUT REALLY?! C'mon, really??
"You're fine. You can go home," they said. Well I was far from fine, but home sounded delightful. "Thanks," I replied. "I think I will." And that's just what we did. I hope at least Jason slept better that night. As for me - not so much. And hardly at all the next few nights. Anticipating Jason leaving for work is never fun. Really scary being damn near immobile. I considered sending the boys to Granny and Papaw's and going down to my Momma's, but alas decided to ruff it out with only a pitbull for protection. Ha! Pun intended.
I had a heart to heart with my 9 year old who promised he'd take care of me. And he did. Quite the man, I tell ya. I was sooooo proud of him. Still am. Thank you, Goose! So Daddy gets back. Steroids are done. And all is again right with the world, . . . NOT! I'm still noooo better. BUT, what's this? Football sign-up deadline is announced. Quite the wake-up smack in the face. Huh?
How many weeks had it been now that I've drug myself from bed each morning only to park my sad ass on the end of the couch downstairs? Once, maybe twice a day I risk venturing to the bathroom with the walker. The rest of the time unmoved. Attention bouncing from the lap top to Netflix and back again. Physically unmoved 'til bedtime. Then crawl and hobble and bed again. What the hell kinda existence is this? One word? p A t H e T i C ! ! !
Most important of allllll in my pea brain . . . HOW THE SAM HELL WAS I GONNA SEE ASA KICK FOOTBALL ASS??? And sports aside, school was approaching. My boys would need school supplies. Clothes. And shoes. Shoes have always been ooober important to me. Ever since my red and white Nike high-top tennis shoes I got for grade school basketball. A side note: I was gonna play for Bobby Knight in them shoes. No joke!
I needed action. Friday I called the neuro myself. I was fully prepared to dump his ass. I reported I was done with the meds, but still no better. The receptionist reported the doc was gone but that she was sure the meds hadn't been in my system long enuff. WTF? How long is long enuff? Grrrrrr. Lucky for me I didn't tell her off right then and there. Nope. I swallowed hard and thanked her for her advice about waiting 'til Monday to give the roids more time.
Then I called Jason, and I can't really remember, but I'm sure he got an ear full. During our convo I made the executive decision that come Monday all HELL was gonna break loose for somebody. I needed something done! And if he wasn't gonna be the one to do it, I'd be right back at Doc Lee's door beatin' it down for a neuro willing to treat my MS. And you know what else? One with a receptionist who doesn't act as a firewall. Good one, heh? Jason came up with that jewel!
Screw this couch trip. I needed a chair. And not just one that Jason or the boys has to push. I need an all-terrain motorized jobby. Like Coach Browning's. "They won't give you one of those," says the husband. Wellllll. The hell you say. If that's what I gotta have to see football, then that's what I gotta have. My upper arm strength is too weak for me to be expected to wheel myself. And our house has plush carpet, linoleum, tile, etc. And I'm a heavy girl . . . just sayin' . . . b A s T a R d S !!! Some body is damn sure gonna do somethin'. If this shit is gonna be permanent, whatever, but I can't spend the rest of my life on this couch. PERIOD.
Saturday. A little calmer thanks to a decent night's sleep having come to realize I needed off the couch - we set out to find a rollator walker. Probably a lofty goal the plan was to purchase said assistive device in order to accompany the kiddos to Shoe Carnival for a back to school shopping extravaganza. Still it would take me forever with a rollator, BUT for the time being it would let me get so far and sit to rest. And so on and so forth over and over again. Plus Jason found one in pink. I was sooo stoked. Strike one, two, three. You're out!
Oh well. We don't know how to bill your insurance. Closed and closed. No walker. No shoes. At least we'll get lunch. Look out, Wendy's. Here we come. What's that noise? SHIT! Flat tire. And get this . . . neither of us had our cell phones on us. Yikes! That'll never happen again. I can tell you that much. So the boys and I stay in the truck and finish our lunch as Jason changes the tire alongside the busy highway, where no one, not one in nearly an hours time stopped to help us.
As Jason was finishing up his Mom and Dad pulled over behind us. They had been headed to Evansville and saw us with our flashers flashing. And the kicker, Jason had left his phone at their house and was supposed to go get it that morning. And homeward bound again. Poor guy. I felt soooo helpless. And had it happened to just me . . ., guess I'd still be sittin' roadside.
Sunday. Calmer still. We slept in exhausted from the previous days outing. Jason worked on the lawn. And I worked on a game plan. What was it exactly that I wanted from my neurologist? What must he do in order to stay my neurologist? First, I want to walk damnit! I may have had this for 10 years now, but especially with the latest findings on a fix -- I was not ready to throw in the proverbial towel.
What then? Steroids via IV like I frickin'asked for in the first place. When I ask, I mean it. Damn! And I wanted to try LDN (low dose naltrexone). Been researching quite a bit of stuff and it sounds waaaaay better than the expensive ass shots that aren't doing a damn thing but bruising me. Just sayin'. Why suppress my immune system when clearly the problem has been proven to be venous in nature.
Wake up world! It's no coincidence I've been better overall since starting my high blood pressure meds and sleeping with my bed inclined. WAKE UP, I SAID! Damn! So my demands are roids and LDN. And should those fail I plan to crawl up his ass 'til I get a power chair 'cause I WILL NOT MISS FOOTBALL!!! Wish me luck, won't you? Alas, thanks, but I'm good -- for now.
Jason sets out early to work on this saultry Monday morning and . . . by lunch he had news. Good news. He says the receptionists were very nice and I'm all set for IV steroids at the hospital tomorrow. Well, that was easy for it not being their policy and all. And . . . my LDN has been called in and will be ready on Wednesday. No sweat. WHAT? Huh? That simple, heh? Maybe we should've went ahead and asked for the chair too? While we was on a roll, ya know?
Prayer works people! No joke. Now I sit here on the couch listening to my three men splash about the pool. And I'm not tearing up. I'm not angry. Not disappointed. 'Cause right now . . . there's hope I might join them again before summer's end.
Thank God for football! And answered prayers. Amen.
The pool. The fall. The crawl. And more falls. Yay, me! Why weren't the steroids workin' their magic? They were makin' me hungry. They were makin' me thirsty. They were makin' me agitated. And swell, swell, swell, but still not well. I got one word for ya - b A s T a R d S ! ! !
Eventually I find myself in good 'ol Doc Lee's infamous waiting room. "What on Earth for?" I can almost hear you shouting. And I'm glad you asked. I may have mentioned in earlier posts that my feet were turning purple and that I had altogether misplaced my left ankle - well, "Dr. Lee," I explain, "I'm here 'cause I have no feeling in this here huge purple lump formerly known as my left leg."
And just to paint you a more vivid picture of the situation, the purple I speak of is more of a morbid bluish toned violet than a stunning royal plum color my dearly beloved Prince sported on his motorcycle. Still today the swelling has gone down a bit but the eery color remains. It is quite unsettling to look down and see a leg you cannot feel. A leg you do not recognize. Bizarro!
Back to the story. I went to see Lee for Jason. He's been worried about there being a blood clot. After researching clots on the internet, yippeee! I too began to worry. I've got a slew of the pre-cursors. Add that to my Ma and my Pa. Then throw in my being damn near completely sedentary and what do you have? A recipe for disaster, I tell ya. For real.
So we're hospital bound to get a doppler of my leg. I joke with Jason that we should write in that I need one of the neck too. He chuckles. He raises an eyebrow. Yeh, maybe I hadn't been joking. So what? Of all days to wind up getting an ultrasound, this was supposed to be the day I was to get one done in Atlanta. A real legit "we trained in Italy with Zamboni" scan. I wish I was there. We'd talked about taking the boys and going to the aquarium and . . .
So MS happened. Then roids. Then rescheduling. Then roids fail. I give up. Depression reigns. What good would a positive ultrasound do me anyways? Whoopity Dooooo!? Back on the table at the old local hospital, aka back to reality. The girls that took care of me were nice enuff, BUT the scan of my entire left leg took less than 5 minutes. From the groin to just behind the knee. And the discoloration and loss of feeling doesn't start until just below the knee. I'm not claiming to know more than these girls, BUT REALLY?! C'mon, really??
"You're fine. You can go home," they said. Well I was far from fine, but home sounded delightful. "Thanks," I replied. "I think I will." And that's just what we did. I hope at least Jason slept better that night. As for me - not so much. And hardly at all the next few nights. Anticipating Jason leaving for work is never fun. Really scary being damn near immobile. I considered sending the boys to Granny and Papaw's and going down to my Momma's, but alas decided to ruff it out with only a pitbull for protection. Ha! Pun intended.
I had a heart to heart with my 9 year old who promised he'd take care of me. And he did. Quite the man, I tell ya. I was sooooo proud of him. Still am. Thank you, Goose! So Daddy gets back. Steroids are done. And all is again right with the world, . . . NOT! I'm still noooo better. BUT, what's this? Football sign-up deadline is announced. Quite the wake-up smack in the face. Huh?
How many weeks had it been now that I've drug myself from bed each morning only to park my sad ass on the end of the couch downstairs? Once, maybe twice a day I risk venturing to the bathroom with the walker. The rest of the time unmoved. Attention bouncing from the lap top to Netflix and back again. Physically unmoved 'til bedtime. Then crawl and hobble and bed again. What the hell kinda existence is this? One word? p A t H e T i C ! ! !
Most important of allllll in my pea brain . . . HOW THE SAM HELL WAS I GONNA SEE ASA KICK FOOTBALL ASS??? And sports aside, school was approaching. My boys would need school supplies. Clothes. And shoes. Shoes have always been ooober important to me. Ever since my red and white Nike high-top tennis shoes I got for grade school basketball. A side note: I was gonna play for Bobby Knight in them shoes. No joke!
I needed action. Friday I called the neuro myself. I was fully prepared to dump his ass. I reported I was done with the meds, but still no better. The receptionist reported the doc was gone but that she was sure the meds hadn't been in my system long enuff. WTF? How long is long enuff? Grrrrrr. Lucky for me I didn't tell her off right then and there. Nope. I swallowed hard and thanked her for her advice about waiting 'til Monday to give the roids more time.
Then I called Jason, and I can't really remember, but I'm sure he got an ear full. During our convo I made the executive decision that come Monday all HELL was gonna break loose for somebody. I needed something done! And if he wasn't gonna be the one to do it, I'd be right back at Doc Lee's door beatin' it down for a neuro willing to treat my MS. And you know what else? One with a receptionist who doesn't act as a firewall. Good one, heh? Jason came up with that jewel!
Screw this couch trip. I needed a chair. And not just one that Jason or the boys has to push. I need an all-terrain motorized jobby. Like Coach Browning's. "They won't give you one of those," says the husband. Wellllll. The hell you say. If that's what I gotta have to see football, then that's what I gotta have. My upper arm strength is too weak for me to be expected to wheel myself. And our house has plush carpet, linoleum, tile, etc. And I'm a heavy girl . . . just sayin' . . . b A s T a R d S !!! Some body is damn sure gonna do somethin'. If this shit is gonna be permanent, whatever, but I can't spend the rest of my life on this couch. PERIOD.
Saturday. A little calmer thanks to a decent night's sleep having come to realize I needed off the couch - we set out to find a rollator walker. Probably a lofty goal the plan was to purchase said assistive device in order to accompany the kiddos to Shoe Carnival for a back to school shopping extravaganza. Still it would take me forever with a rollator, BUT for the time being it would let me get so far and sit to rest. And so on and so forth over and over again. Plus Jason found one in pink. I was sooo stoked. Strike one, two, three. You're out!
Oh well. We don't know how to bill your insurance. Closed and closed. No walker. No shoes. At least we'll get lunch. Look out, Wendy's. Here we come. What's that noise? SHIT! Flat tire. And get this . . . neither of us had our cell phones on us. Yikes! That'll never happen again. I can tell you that much. So the boys and I stay in the truck and finish our lunch as Jason changes the tire alongside the busy highway, where no one, not one in nearly an hours time stopped to help us.
As Jason was finishing up his Mom and Dad pulled over behind us. They had been headed to Evansville and saw us with our flashers flashing. And the kicker, Jason had left his phone at their house and was supposed to go get it that morning. And homeward bound again. Poor guy. I felt soooo helpless. And had it happened to just me . . ., guess I'd still be sittin' roadside.
Sunday. Calmer still. We slept in exhausted from the previous days outing. Jason worked on the lawn. And I worked on a game plan. What was it exactly that I wanted from my neurologist? What must he do in order to stay my neurologist? First, I want to walk damnit! I may have had this for 10 years now, but especially with the latest findings on a fix -- I was not ready to throw in the proverbial towel.
What then? Steroids via IV like I frickin'asked for in the first place. When I ask, I mean it. Damn! And I wanted to try LDN (low dose naltrexone). Been researching quite a bit of stuff and it sounds waaaaay better than the expensive ass shots that aren't doing a damn thing but bruising me. Just sayin'. Why suppress my immune system when clearly the problem has been proven to be venous in nature.
Wake up world! It's no coincidence I've been better overall since starting my high blood pressure meds and sleeping with my bed inclined. WAKE UP, I SAID! Damn! So my demands are roids and LDN. And should those fail I plan to crawl up his ass 'til I get a power chair 'cause I WILL NOT MISS FOOTBALL!!! Wish me luck, won't you? Alas, thanks, but I'm good -- for now.
Jason sets out early to work on this saultry Monday morning and . . . by lunch he had news. Good news. He says the receptionists were very nice and I'm all set for IV steroids at the hospital tomorrow. Well, that was easy for it not being their policy and all. And . . . my LDN has been called in and will be ready on Wednesday. No sweat. WHAT? Huh? That simple, heh? Maybe we should've went ahead and asked for the chair too? While we was on a roll, ya know?
Prayer works people! No joke. Now I sit here on the couch listening to my three men splash about the pool. And I'm not tearing up. I'm not angry. Not disappointed. 'Cause right now . . . there's hope I might join them again before summer's end.
Thank God for football! And answered prayers. Amen.
simple enuff, right?
From Dr. Sclafani himself . . . here's what I need first:
1. transverse doppler of the IJV in J1, J2 and J3 during inspiration in the supine and sitting positions. Measure color and waveform at each site in both positions. Look for reflux and looking for no flow.
2. Longitudinal doppler imaging of the vertebral veins during inspiration in supine and sitting positions looking for reflux by color and waveform
3. B-mode ultrasound to look for abnormal valves, septae, webs
4. Transcranial color doppler and waveforms to look at the deep cerebral veins for reflux
5. measure cross sectional area of jugular vein in the spot where it is largest in supine and measure same cross sectional area in the same location while sitting up. Subtract sitting csa from supine CSA.
DOPPLER DIAGNOSTIC OF CCSVI IF TWO OF FOLLOWING PRESENT
1. REFLUX IN IJV OR VERTEBRALS
2. NO FLOW IN JUGULAR
3. REFLUX IN DEEP CEREBRAL VEINS
4. CSA SUPINE MINUS CSA SITTING IS NEGATIVE NUMBER
5. BMODE SHOWS STENOSIS, WEBS, ABNORMAL VALVES ETC
1. transverse doppler of the IJV in J1, J2 and J3 during inspiration in the supine and sitting positions. Measure color and waveform at each site in both positions. Look for reflux and looking for no flow.
2. Longitudinal doppler imaging of the vertebral veins during inspiration in supine and sitting positions looking for reflux by color and waveform
3. B-mode ultrasound to look for abnormal valves, septae, webs
4. Transcranial color doppler and waveforms to look at the deep cerebral veins for reflux
5. measure cross sectional area of jugular vein in the spot where it is largest in supine and measure same cross sectional area in the same location while sitting up. Subtract sitting csa from supine CSA.
DOPPLER DIAGNOSTIC OF CCSVI IF TWO OF FOLLOWING PRESENT
1. REFLUX IN IJV OR VERTEBRALS
2. NO FLOW IN JUGULAR
3. REFLUX IN DEEP CEREBRAL VEINS
4. CSA SUPINE MINUS CSA SITTING IS NEGATIVE NUMBER
5. BMODE SHOWS STENOSIS, WEBS, ABNORMAL VALVES ETC
Saturday, July 17, 2010
WANTED
Stunt double for hire!!! How's this for regular? Two blog posts in one day. Must be your lucky day. As it sure as shit ain't mine. So I just tucked the last post in via Facebook update and set off for a potty break. Nothin' too crazy. No boot scootin' or grapevining or whatever. Hell, I didn't even it go it on my own, which yes, for like a nano second actually crossed my mind. Buzzzzzzz! Wrongo! I cripped along via tiny baby steps. First the right. Stop. Then drag the lefty along the carpet 'til it can stand to hold a little weight. Just past the celebrated half way point. Whamo! Slamo! And she's down again, sports fans! Had she been a horse we'd have had her put down years before now. Poor dear!
What I'd hated most of all was scaring my kiddos. By now you'd think they'd have grown bored with it all. And in some ways they had, but, "With the walker, MOM?" Huh? As I struggled to remove my heep of me from atop the crumbling apparatus I wondered what about this fall had shook 'em up any more than th growing number of others. As I cursed the walker somehow trying to cuss it out from under me I realized this had been my first fall with a supposed assistive device in hand. So in conclusion, falling sux. Falling even with the assistance of an assistive device - sux worse. And further . . . you sittin' down for this one?
Falling atop the assistive device into the basement door thus causing it to slam shut and trapping your husband downstairs whilst you writhe in pain atop your walker desperately struggling to remove yourself from your current location in order to allow your nearly panicked hubby up to the main floor to offer you some real assistance **(BREATH)** That, my friends, really, really sux. And the phone starts ringing meanwhile back at the ranch. The boys cowering at my barking orders with my face in the carpet answer it just in time to hang it up per their emerging Dad's new order. Guess his position of standing out ranked my position of carpet colonel. Anyways, sorry we hung up on ya Amelia. Just bad timing. Had you been calling in about the position of stunt double?
It only pays room and board and is hardly worth it considering what bad bruisers I know we are. I hadn't realized how bad mine were blacked and blued until gettin all up close and personal with 'em beneath the glow of the hall light. Nasty! I'm so sick of this shit! Laugh with me, won't ya? It's all I can do. And way better than cryin'! So any takers on the stunt double? You got my number right? Don't give up if we hang up on ya. We're prolly busy fallin' . . .
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