Visit 11 FTY720 Fingolimod Trial and the helpful reminders

I don't know if I'll ever top that last post... unless I break a bone or something equally as painful, but I have to pop in here and keep everyone updated on the trial since that's what this blog was supposed to be about.

I have visit 11 a week ago today. They just drew blood and took vitals that time. Next time (on the 9th) I'll have to have a PFT (Pulmonary Function Test) and an eye exam. Oh boy! The hurry-up-and-wait place. I'll be sure to bring a book.

It's been really crazy these last couple of weeks since the extension phase started. I really feel lost without the shots (I'm sure you are all boo-hooing for me). It's just that after 10 years of sticking myself with a needle either daily or weekly, now that I'm not doing it, I find myself forgetting that I even HAVE MS. Kinda like it was all a bad dream.

Oh, sure, I still have fatigue (that I blame on not getting enough sleep) and my legs like to get spastic and twitch when I watch TV at night (don't everyone's?) and I find myself forgetting stuff easily (but then so do my mom and my sister who don't have MS).

I think I've come full circle and I'm back at the Denial Stage.

I guess I have to do all the bargaining, getting angry, being depressed, and then accept it all over again.

I've gotten so complacent about the whole thing that I started freaking out that I may forget to take my pill....the whole reason I feel so great! I wouldn't be a hypochondriac/worry wart if I didn't have something to worry about.

So I decided to set up a Google Calendar and make it send me email alerts since I'm usually sitting here at the computer at 9am when I should be taking my pill.

It worked fine for the first few days until I added reminders for all the other things in my life, like Boy Scout meetings, clinical trial appointments, bill due dates, and anything else I could think of.

For some reason it quit sending me the TAKE YOUR PILL emails. In desperation, now that I had made myself dependent on an electronic device to orchestrate my every move, I decided to get the Post-it Notes virtual version.

That was fine too. You could even insist that your sticky notes are always on top, no matter what you are doing. That worked out really well until the visual portion of my screen was reduced to a hole in the middle surrounded by all the events in my life on my virtual paper scraps.

I virtually trashed all my virtual stickies and went to Yahoo to see what they had to offer.

Not only did they have a calendar which would let you create events and send email reminders, you could also set it up to send a message to your CELL PHONE! How cool! So now, if I'm not sitting in front of the computer at 9am, I'll still be sure to get the reminder because my cellphone is always in it's holster on my hip, like Annie Oakley only, instead of shooting them, I can whip it out and call 3 people standing behind me while looking in a mirror over my shoulder.

I think I have found the Mother of All Virtual Reminders and I go off about my day after setting up the most important reminder of all...the "Take Your Pill" cellphone reminder set to go off at 10 minutes before The Event.

That night I sleep until my bladder wakes me at quarter to 4. I return, not to my bed, but my recliner, for a change of scenery. Don't ask me why, I have just taken to sleeping in that chair and it's become more comfy than my bed.

I'm very nearly back to sleep when my cellphone rings, scaring the beejeebers out of me. "Something's happened to Mom or _____, or _____, or _____!" Fill in the blanks with every name in our family.

When I finally got to it, my heart was racing and I was very nearly in a panic. There's never a good news 4 am phone call unless it's someone who just gave birth and nobody in our family is currently pregnant.

I flip open the phone and I'm greeted with "TAKE YOUR PILL".

Now I'm calling Yahoo all the dirty names I had reserved for Google when their calendar drop me like a prom date with a zit the size of Houston.

Since I'm wide awake now I go investigate how 9am had become 4am.

There's no issues with the calendar. Everything appears in order. Then it occurs to me.

Set the time zone, Stupid.

This morning the cellphone rang exactly at the same time I was staring at my inbox and got the matching email telling me to TAKE YOUR PILL.

And right behind it was Google's email telling me the same thing.

After seeing all that and realizing everything was set up perfectly and knowing that I'd never have to forget another thing in my life...

I darn near forgot to get up and take my pill. I'd gone on to read other emails and 20 min. later jumped up and took it.

Next comes the Mom-nagging-back-up. If I tell her, she will call me, nag me about taking my pill, and actually tell me to go take it while she hangs on. Mom's an expert at that nagging stuff.

The great thing about all this is the idea that I could ever make it to the point of not being constantly consumed with the fact that I have MS. To not be feeling it's impact every waking moment is a fantastic demonstration of just how far I have come.

18 months with no relapses now...and somewhere along the way my legs quit burning and my hips quit hurting.

I just woke up one day and realized "hey! nothing hurts, nothing's numb, and I have this strange sensation I've not had in years....what is it?? What could that be? I know!! I feel NORMAL!!"

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 last 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 audiencage.

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.


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.