Friday, September 19, 2008

By Special Request...

Here's a blog post, by special request of a newbie reader, recapping my progress over the last year of the trial:

Clinical trial start date: 8/20/07
Starting symptoms:

  1. Numb legs.
  2. Severe burning in both legs from knees down.
  3. Unable to walk the grocery store (used the electric cart)
  4. Walked with a cane.
  5. Unable to run, hop, jump.
  6. Severe panic attacks that necessitated use of Xanax as needed.
  7. Depression.
  8. Spasticity in arms and legs.
  9. Extreme fatigue coupled with insomnia.

  • Bladder and Bowel *issues*. That's all I'm saying.

  • (there may have been more symptoms but I forget).

    At one year anniversary:
    Change in above symptoms:
    1. My legs aren't numb, except occasionally if I overdo it (the numbness comes back slightly but goes away with rest).
    2. Same thing with the burning -- only upon overdoing it.
    3. I can walk the entire grocery store and even PASS other slow pokes while doing so.
    4. I do NOT use the electric carts or the blue parking spaces.
    5. I don't know where my cane is.
    6. I can run across the yard, I can hop on both feet or either foot, I can JUMP!
    7. I haven't had any Xanax in at least 11 months.
    8. I'm no longer depressed. (I never took any medication for it either).
    9. My arms and legs still have some occasional spasticity.
    10. I sometimes take naps in the afternoon -- getting fatigued if I eat too many carbs at lunch.
    11. The insomnia thing I still have some trouble with. Some nights I fall right to sleep, other nights I go to sleep and wake up a few hours later, and some nights I don't fall asleep until the wee hours of the morning. It all depends. I adjust my naps accordingly.
    12. Thank God the bladder and bowel issues are over.
    13. Anyhow, that's the difference between now and then. Just last night when I was over at my Mom's house, we were all reminiscing about what I was like back then and their perceptions of the changes are even more dramatic than my own. This FTY720 Fingolimod trial has been instrumental in my breathtaking progress toward wellness, in my opinion. By coincidence, I got this link in my alert email today about Fingolimod: Stu's Views Article on Fingolimod Also, I was diagnosed in 1999 and have had at least 2 relapses per year since then. From 2005-2007 I had relapses every 3 months, with a recovery period of 3 months. I was basically suffering all the time. It has now been (drum roll please) SEVENTEEN MONTHS WITHOUT A RELAPSE!! Needless to say, I am a true believer. BTW, Cheese, this isn't the funny post I promised. It's coming tho. I have a draft I'm working on. Anyhow, thanks to all my readers -- old and new -- for following along, and this concludes the "Because You Asked" section of my blogging day. I will now return to my self-absorbed musings that try to be funny.

    The grass may be greener over there, but I'm more black and blue.

    What the heck is she talking about now??

    My sister's laughing already because she heard the story the other night at our Thursday night get together. I expected to go over to Mom's to just show everyone my newly unveiled and de-stitched scar on my back, but I ended up showing them the scrape on my stomach instead.

    My son and I had driven back up to the dermatologist yesterday afternoon for the stitch removing ceremony from my war scar of fighting the Fingolimod battle against MS. (Too much to explain, just go back a few posts).

    It was Thursday and Thursday is the day my sister and I meet over at Mom's and have dinner with Mom, my eldest son and his wife, and my granddaughter, and my 10 year old who comes with me.

    We were going to go straight there after getting back to town at 6:30 but SOMEbody had to use the bathroom and I decided to check my email. (I am seriously addicted to the internet).

    We both get done with our respective tasks and we head out the door, me first. I yell over my shoulder "Make sure it's locked!" and he did.

    I looked down at my hand. Uh oh. The keys are by the computer.

    This wouldn't have been a big deal had I not relentlessly hounded John into finishing the privacy fence. The only way in was in the back yard and it was a fortress protected by a 6 foot fence with a gate that has 2 (locked) locks.

    I look around giving the front yard my best MacGyver I Spy once over sweep in search of how to get over the fence. Aha! There's an A-frame from John's work van haphazardly leaning against the fence, as if inviting someone to climb up and over.

    My son climbs up and looks over the other side.

    "I dunno, Ma. I think I might get hurt," he says as he comes back down.

    "Oh for cryin' out loud" I say impatiently. "Here, let me have that thing." I take the A-frame from him and he points out that our old pool ladder is leaning up against the inside of the fence about 12 feet farther down.

    I take the A-frame over to where I can see the ladder between the fence slats. On this side, however, is some construction related material from John's work. Carpet padding, specifically.

    I plant the A-frame straddling the roll of padding, sure that it will work just fine even if it is a little wobbly.

    Did I mention that we live on an *arterial highway* going through our little town? And this was right around rush hour? Maximum audience.

    As I am climbing up, I am thinking to myself "heh. You'd have never caught me trying this last year! I've become darn near invincible! Good thing I wore sneaks instead of flip flops."

    And it was right about then, as I had one foot on the top rung and the other poised, mid-air to swing over the top of the fence, that I realized the A-frame was moving and it wasn't a side to side wobble. It was falling away straight out in back of me.

    As I fell down onto the top of the fence which hit me right square in the gut, I remember thinking "glad we got that square topped fencing and not that real pointy stuff!" I balanced there for a couple seconds and then began to slide. The fence top caught under my shirt and the rough, unpainted wood proceeded to peel me like a potato as gravity pulled me down.

    "YEEEEEOOOOOOOWWWWWWW!!!" was all I could manage to get out as I slid uncontrollably.

    Then I realized, to my horror, the fence had scraped right under my shirt and managed to snag under my bra and I was hanging there, in front of the rush hour traffic with my shirt and bra over my head and my feet still off the ground.

    Oh. My. God.

    So many thoughts racing through my head as my hands worked madly to try and lift my entire body weight off the fence by my snagged shirt and bra.

    "I hope my neighbor isn't watching!"
    "I hope my son isn't watching...and scarred for life!"
    "Man I don't want to find this on youtube!"
    "I hope my brand new bra isn't all womped out of shape now! I paid good money for that!"
    "That breeze feels kinda nice!"

    It was probably only seconds before I was down off the fence. Then I was so busy surveying the carnage that I forgot I had an audience and when I remembered I was frantically trying to cover back up.

    So how did we ever get the keys and go to Mom's that night, you ask?

    My son, who had fortunately been spared from witnessing the whole tragic act, was around the corner wandering and goofing off, oblivious to it all.

    When he saw me crying over my hurt dignity he asked what was wrong and I told him the fence had just beat me up.

    He puffed out his chest and strutted over to the fence proclaiming "I'm not letting MY mom get hurt again! I'm going over the fence!" He proceeded to climb with a purpose and was up and over the fence without so much as a splinter to show for it.

    He was in the back and out the front with keys in hand before my stomach and chest had even done welting up and bleeding and turning black and blue.

    So, there could be one more side effect of Fingolimod that I hadn't considered.

    The bottle should say "Caution: May cause feelings of grandeur and invincibility that could cause you to go temporarily insane and make a 47 year old do something that only 10 year olds should even attempt."


    "Caution, always tuck in your shirt while taking this drug. May get hooked on fence and hang naked in front of traffic. Be sure to stay away from all fences before you know how you will react to this medication."


    "Stop taking this medication and consult your physician immediately if you find yourself hanging by your shirt from your fence during rush hour with your boobs exposed for all to see. This could be a serious reaction and may need medical attention, especially if scrapes, swelling and bruising develop."

    If I have anything to say about what the warning labels will be, that should about cover it.

    Tuesday, September 16, 2008

    It's Official!! I'm on drugs!!!

    I'm so freakin' happy I can't stand it! Probably because I'm taking these:

    In all actuality, they aren't "pills" but rather "capsules" and they look more like this:

    Well, without the face, arms and "F" on it's chest, but you get the idea. I took creative liberties.

    I spent the day getting randomized yesterday even though it was anything but random. I took my very first honest-to-God, no-bout-adout-it, Fingolimod capsule. Then I waited to see if I'd have all sorts of weird side effects.

    I have had no doubt for a year now that I have been on the actual FTY720, but I would not be the professional worrier that I am if I were to neglect the opportunity I had before me to envision my horrible demise on the floor on the Research Department from heretofore unknown side effects.

    That could be why my starting pulse rate was 88. Well, for that reason and also having just spent the previous 2 hours screaming to deaf ears through my closed windows with running commentary about the driving capabilities of surrounding motorists who were hell bent on filling the space between me and the next guy. Didn't we all learn in Driver's Ed (or at least from that book the DMV hands out) that you are supposed to leave a car length for every 10 miles per hour between you and the next guy? These idiots around here think that if your bumper isn't jammed up the tailpipe of the person ahead of you, then you must be inviting them to slide sideways into that space in order to fill up the unnatural void and make everything right in the universe.

    If only they knew that my brakes worked on roughly the same principal as the ones in the Flintstone's car, maybe they wouldn't be so eager to get directly in front of me.

    This was my only form of entertainment on the drive up because I took the Jeep. It's a 95 and believe me when I say that it's had a hard life. There's no radio, so I brought along my new MP3 player chock full of all the songs I love. I made sure I packed it in my tote bag the night before so I wouldn't forget it because 2 hours of talking to myself leaves me teetering on the edge of deranged.

    Unfortunately, I was destined to arrive at the lab deranged. I was part way there and decided to dig the MP3 player out of the bag. It's a simple, cheap device that has very few buttons. I know by the feel of the contours which button does what. The on/off button refused to work, however. I repeatedly tried it and repeatedly the screen lit briefly and went off.

    I surmised that something else in my tote had leaned on the power button and caused the battery to inadvertently drain. Since I was running late after having been TOLD to be on time, I didn't want to chance wasting any more time stopping for batteries. Instead, I sang the songs "sans music" (because I can't spell that word I wanted to use and spell check refused to bail me out) while pausing to cuss my fellow motorist.

    But I any rate, that' s most likely the reason I had a high pulse rate. After an hour it went to 77 (which is still higher than normal for me).

    I brought some movies that I (cough, cough) *made* and brought with me for my viewing pleasure figuring they'd stick me in the conference room with the cushy chairs. I asked if it was available and it was, so I planted myself at the head of the big oval table and plugged my first movie, "Bucket List" into the TV/dvd player.

    I had a cooler full of drinks, a salad, a pita bread turkey sandwich, some grapes and a chocolate pudding. I had a seriously hard time not devouring it all before 10am since I had been awake since 5am and forwent (that is the past tense of forgo, is it not?) breakfast. I cracked open the container of grapes around midway through the movie and was only going to eat a couple but ended up with a grape-bunch carcass rather quickly. Oops.

    When the nurse came to take my vitals the first time I mentioned my lack of self-control and she said I had $8 worth of "meal tickets" coming to me courtesy of Novartis. How thoughtful. They shouldn't have! But I took them anyhow. As soon as the nurse left (and I know you're reading this Lorene) I devoured my lunch with wild abandon.

    Next hour, the movie was just ending and she had the tickets for me. This is when I decided to go for a walk in search of batteries for the MP3 player. The nurse suggested the pharmacy across the street. Sounds close, huh? Well, in actuality, it was 8 stories down, across a humongous parking lot, a 4 lane divided highway, and across another parking lot that was up a hill that has no business being in Florida.

    I walked over to find out that there's no place to buy batteries there unless I wanted to walk to Walgreens -- another 4 city blocks in the direction that takes me away from the Research Dept. I looked at my cell phone (because my watch battery died eons ago and I have yet to replace that one, too). It was 40 min. until my next vitals check. No dice. I just didn't trust myself to be able to "hurry". I trudged back down the hill, across the street, and across the parking lot. I got there with 30 min. to spare.

    That's when I went and got lunch with my meal tickets. Yeah, I know I just ate the one I had packed, but this cafe in the medical building only serves during a certain time period and I didn't want to miss out. (sounds good on paper.)

    Glad they told me it was teriyaki chicken because even playing 20 questions, I'd have never guessed. They are creative dish namers. Suffice it to say I'm so glad it was play money and none I'd had to cough up.

    I returned upstairs to the nurse's office/supply room (really, Lorene, you need to complain about that) and retrieved my cooler (which still had drinks) and was placed in an exam room and given a portable DVD player to resume my movie watching. Seems they sometimes use the conference room for conferences around lunch time and I really didn't need that big of a place to stagnate.

    She set up the DVD player and my homemade DVDs all refused to work. I brought a book (and the now useless MP3 player) as backup, but we all know the MP3 player was out of commission and reading always puts me to sleep. That's when she came up with a novel idea.

    She told me that the McDonald's which was 4 city blocks away, has a Red Box where I could rent movies...if I felt like walking that far. So, she took my vitals and I was again off, out the door.

    I debated driving as it didn't seem like that far of a walk. I'd been to that McD's before and my recollection told me that it was pretty close. I didn't stop to think I had always driven there before. I should have realized that if I didn't see it when I looked up the street, then it was farther than I should be making myself walk.

    But the Jeep was occupying prime real estate in the parking lot and no amount of bribing would get the attendant to hold it for me. "You have to take your chances," she said.

    So, in a blond, senior citizen type moment (did I offend enough people yet?) I decided that leaving my car in it's ideal spot while I walked 4 city blocks, just so I wouldn't have to walk a little farther in the parking lot when I drove back from McD's was the more logical thing to do.

    Maybe it was a Finglimod side effect... do something totally illogical and only realize the error of your ways when you are at the farthest point (a.k.a. McD's) before you realize what a blunder you have made.

    I took quite a while picking out my movies. It was blazing hot outside and I had chosen to wear black (in keeping with my day's decision-making Theme of Stupidity).

    I felt my legs go all rubbery on the way back. I could feel my pulse pounding in my neck, I was on autopilot floating along just hoping I could make it back at all, let alone before the next vitals check. Heh...I might not have any to check at this rate.

    I got back somehow and sat on the curb right in front of the building because I still had a half hour. I hadn't been gone long, but the walk seemed like it had taken days and I should be in another state by now. The only state I was in was one of exhaustion.

    I took the elevator back up to the 8th floor and Lorene said "did you see Walgreens? It was right across the street from McDonald's."

    "Yes, I saw it, but there's no way I could have ever crossed that street, shopped for batteries and been back in time for the vitals check." It was all I could do to keep from laying down on the bench at the bus stop and taking a nap.

    "I'll go there in the Jeep after this is all over," I said in a brief moment of lucidity.

    She left me alone in the exam room with "Baby Momma" playing. I ate my pudding and drank another soda while I was begging the movie to be worth the walk. It was cute but "worth it" was debatable. The second movie was Charlie Wilson's War and while I probably could have watched it at home, it started off slow and threatened to put me to sleep. Since I didn't have a pillow and binky, that wasn't an acceptable outcome.

    I did an encore of Baby Momma for the last hour.

    I got my last vitals check and the ending EKG.Oops! I forgot to mention the first one, and ya'll are probably more interested in the specifics of the clinical trial than hearing me blather on about driving, lunch menus, olympian walks, and batteries, but that's the beauty of being Emperor of The Blog -- I write what I want to and you must suffer the consequences or click that "next blog" link at top left and take your chances. (Are you out of breath reading that last sentence yet?)

    Anyhow, I got my EKG and when the doc who oversaw the Randomization took a look at the printout, she said I had a "real nice looking heartbeat". At 47 you are more appreciative of hearing that than if someone had said "nice butt". I'm glad my heartbeat looks good...especially after having the Real Deal running through my veins all day for sure.

    When it was all over, they gave me a To Go bag with 3 pill bottles in it and a new appointment scheduled for 2 weeks from now. NO MORE NEEDLES!!! YAYAYAYAYAY!!

    I left there happy and walked the short distance to the Jeep, now thankful I'd walked to McD's earlier since that was safely in the Past and this short walk was in the Now. (Kind of like when I do the dishes the night before and wake up to the surprise of a clean kitchen, same principle.) I got in and drove the 4 blocks to Walgreens and went in to get my batteries.

    When I came out, I pried the back off my MP3 player and plugged the new energy unit in. I turned it on. It came on and went off...just like before.

    I dug my bifocals out of the totebag, mystified that it wasn't working. I tried again.

    The tiny screen had one even tinier word on it. "LOCKED" it said. I messed with all the buttons. It didn't take long to figure out that one on the bottom of the device, which I had tried to figure out yesterday what it did, was the one that locked it from being accidentally turned on as I had suspected happened all along. Sheesh.

    I listened to music the whole way home and didn't cuss much at all at my fellow drivers. After all, I was on my Happy Pills.

    And that ends the day's events. Now it has been proven beyond a shadow of a doubt that I can write for a very long time about 6 hours worth of absolutely nothing (10 if you count the drive). I missed my calling. I should have been a writer for Seinfeld.

    If you're still here reading, for God's sake, get a life. (Just kidding, thanks for reading!)