Thursday, September 25, 2008

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!!"


  1. The phone waking you at 4am is tres funny! Glad to hear things are going so well, overall.

  2. Girl! You gotta post at least ONCE a week here...I go through serious withdrawal if I've got nothing to read about your tales!

    The calendar thing? Sadly, I CAN relate...I often misplace my calendars and have to have a calendar to remind me where my reminders are.

    Linda D. in Seattle


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