Cue drum roll please....
We must ask those of you in the audience to give us complete and utter silence as this next feat will take the utmost concentration.
Well, I feel like I've been a circus act since I've been in this trial. Working without a new, tight rope act, but mostly clowning around. I'm not going to see how many people come out of my car when I open the door tho. I have to draw the line somewhere.
The Grand Finale that I speak of is my Visit 10. My one year anniversary, and official end of the clinical trial, is August 20th, so I have been gearing myself up for moving on to the extension phase where there will only be pills and not shots (SQUEEEEE!!!)
I have been counting down and Monday is Shot Day. When I took my shot today, it was #4 in the count down to needle freedom...with 3 left to go.
After I did my shot, the phone rang. It was the study coordinator saying she's scheduling my visit 10 appointments. Due to the large number of tests that have to be done for the Grand Finale, she wanted to know if I'd like to split it into 2 visits or just make it one long day.
Then she told me she had my Pulmonary Function Test scheduled for August 5th at 9am and my eye exam and OCT for 1:30 and 2:30 (that same day) respectively. So if I don't have anything else scheduled that day, AND they get me in on time for my appointments, I will have to leave my house at 7am and not get home until 5:30. I told her to cram a few more tests in for that day since being poked and prodded makes the time go faster than reading magazines in a waiting room.
Then I asked her about Aug. 20th.
"Do I have to come in on that very day since it's my 1 year anniversary date."
"No. The tests that we are scheduling for the 5th and whichever other day I can get the remainder of your tests on will complete your Visit 10."
She said that my MRI films and other test results will be sent to Berlin (huh? I didn't bother asking why) and that with Novartis' approval I may end up entering the extension phase a few weeks early.
It took a few beats. Sometimes I'm not so quick on the uptake.
When it hit me I squealed in the poor lady's ear.
"YIPEE!!!! You mean I may not have to take the rest of these shots?? Next week's might be my last one??!!"
She laughed at my enthusiasm and said "Yes, that it correct."
I'm one happy camper.
Staying true to hypochodriacal form, however, my next question was this:
"Hypothetically speaking, IF I were on Fingolimod now, when I enter the extension phase is there a chance they will change my dosage? Or will they keep me on whatever I have been on, IF I've been on it?"
She knows what a worrier I am and knew what I was thinking...I'm going to freak out.
"You will remain on whatever dose you have been on for the last year, or you will begin Fingolimod for the first time. We don't know which. BUT, IF you were on it all along, the dose you will be on in the extension phase will be the same."
She knows how to calm me down, bless her heart. I wonder if the other patients have been such wussies.
So, today I celebrate! Maybe I'll have Dairy Queen for dessert tonite. I deserve it. Plus, I want it and have been waiting for a good reason. Looks like as good a one as any.
So far, to date, I have missed only 2 pills (both times I was out of town with my mother and sister when I remembered) and no shots. I can't say I was ever that good about remembering my shot when I was on Copaxone.
But I have a routine. I take the pill at 9am rain or shine. 9am has become ingrained on my brain as a time when I should suddenly freak out that there's something I should be doing. When I realize 9=Fingolimod, I take my pill and (almost) never forget. The results I've gotten are a added plus that helps me remember.
I wake up every morning knowing MS is with me. And then I take my pill, and then I say a silent prayer that I have been one of the fortunate ones who has done well in this trial and been able to live a relapse-free life for 14 (or 15, I lost track) months now. I am truly blessed.
So this concludes my show for now, hope you found it entertaining.
I'll post back when I go for the visit 10 appointments as I sure there will be some fiasco that I could spin into a funny tale for you. Got to keep you all entertained.
And we still have the extension phase. :-)
Monday, July 28, 2008
Sunday, July 13, 2008
No, that's not really me, but I am sure if I caught a glimpse of myself partaking of my newest activity, that's just what I'd see.
My son is turning the big One-Oh next week and he's never had a bike. Yeah, I know, I know. I've heard it from everyone what a bad parent I am to have deprived him of such a basic a childhood right of passage. Sue me. We live on a major arterial highway and the people all drive like idiots, our driveway is dirt, and there are no sidewalks...on this side of the street. That's my excuse and I'm sticking to it.
Anyhow, living by the philosophy that it's never too late to right a wrong or learn something new, I decided to make myself feel like a better parent and get my son a bike for his birthday. While this makes me feel great, my son is not so thrilled. He never saw the lack of bike-riding prowess as something that needed correcting. He thinks if Mom can drive him where he needs to go, why bother. Bike riding appears to cause a person to exert themselves and my son thinks this is totally cruel and unusual punishment. He will learn to ride a bike as long as I hold video games hostage. (We've got a lot of work to do in the "healthy lifestyle" department).
Now that I have confessed what a bad parent I am, I will get to the actual point of this post... I not only bought my son a bike, I got one for me, too! I am 47 years old and haven't ridden a bicycle since I was probably 16. I kept the receipt and hoped I didn't ding it up too badly tryin' her out. I was sure I'd fail miserably and be returning it in no time.
Something amazing happened, tho. I pushed the bike down the driveway and across the street to where the sidewalk is and gingerly climbed aboard. Saying a silent prayer that my dizziness would cause me to veer left and crash into someone's yard rather than right, into oncoming traffic, I pushed off.
I didn't even wiggle, I pedaled strongly and confidently, as if the last time I was on a bike was only moments (rather than decades) before. I rode around the block liked I owned it, only suffering any doubt when it came to stopping.
It seems that my brain remembers that stopping involves pedaling backwards, not squeezing the handlebar thingy. There was a brief moment of heart-stopping panic when my feet spun in backwards circles and I headed toward an intersection without slowing down. I remembered where the brakes were just in the nick of time.
I'm not sure what got my heart rate up -- the pedaling or the terror -- but I had to sit and rest for a bit when I got back to my front porch.
Looking back on it, what surprised me even more than the fact that I didn't fall right over as soon as I picked my feet off the ground was the realization that bike riding was less exertion than I recalled. It really didn't take much effort to propel myself forward. I could get used to this!
One thing I'll have to get the hang of is switching gears. It seems that while I was concerned about getting one that was the right height so I could touch the ground while sitting on the seat, I totally overlooked how many gears it came with. My new bike must be meant for people who like to fiddle with stuff like the knobs on the handle bars a lot because mine appears to have 18 gears. Heck, all I needed was one gear with pedals that stop you went you go backwards, but do you think I could find a bike like that?
Had I really thought for a minute that I wouldn't be taking it back today because I was unable to maintain it in an upright position, I'd have probably put a little more thought into buying it. The 2 criteria it passed for me to buy it were 1) it was on sale and 2) my feet could reach the ground when I sat on the seat.
My MS150 riding brother will no doubt have something to say when he sees my new wheels.
I plan on taking it to our next family get together at Mom's. He's always got his titanium, top of the line, bike that the front wheel comes off for easy storage in the back seat of his car with him when he comes. He's often wearing his aerodynamic bike clothing, too, since he's usually just come from riding a gazillion miles earlier in the day.
He's 14 years my senior and I can't even fathom doing what he does. To ride a bicycle 150 miles in 2 days is just crazy. I don't see how any human can do it...especially one who comes from the same genetic make up.
I don't plan on riding in the MS150 but I'm not ruling it out, either. Someday, maybe...
But for now, this will be more my speed as I return from grocery shopping while trying to save a little $$$ on gas:
And I'm thinking of upgrading to one of these babies to keep from dealing with a flat, and also to make those following me think, by my tracks, that I just walk really fast:
Posted by Jeri Burtchell (TickledPink) at Sunday, July 13, 2008