December 30, 2008

Don't let the door hit ya on the way out!

While 2008 wasn't the WORST year I've ever had personally, it certainly was a crummy one for just about the entire world.  Holy cow, what has happened to the global economy?

I am ready to see this year go.  In fact, I'll hold the door open and kick it in the ass to get it moving quicker.

Here's a toast to 2009!  

December 19, 2008

Hey there moley girl

This can also be called Fingolimod Trial Screening Day, Part Two.  This time I visited the study Dermatologist to get a body check.  Apparently a potential side effect of this study drug is melanomas, so they want to A) make sure you don't have any prior to entering the study, and B) make a record of every mole you have on your body so if any of them changes there will be a Before and After photo array.

Yep, that's right.  The derm took pictures.  Of each and every "beauty mark" on my body.  Even the ones in places that have NEVER been exposed to the sun.  And this was after she measured them.  I think there were 27, not including the four she went ahead and removed. They've been sent out to whatever lab it is that'll determine whether or not they are anything to worry about.

They'll call me if there's anything to worry about, otherwise I won't hear a thing.  This is definitely a case of no news is good news, if you ask me!  Seeing as how the next two weeks are Christmas then New Year's, I think if I don't hear anything during the week of January 5 - 9, I should be good to go!

December 15, 2008

Out of the Holding Pattern?

 I had my screening for the Fingolimod research study yesterday. It was a long and busy day:

I got lost going downtown and was 30 minutes late!  Rather than arriving at 7:00am, I walked in at 7:30 but nobody seemed to care.  

First I met with the research doctor who did a cursory examination and was ready to answer any question I had.  Because of my almost constant investigation and reading of histories, press releases and blogs, the newest announcement late last week resulted in only one new question.  Thank god, because I was kinds of scared of saying, "Nope, I know everything I need to know."  I thought he'd look at me like I was insane or something.

Anyhoo, two deaths were mentioned in the release, attributed to "fatal herpes infections." I spent all weekend trying to figure out how a herpes can become fatal.  The doc explained that the deaths were caused by encephalitis - or was it meningitis, shit, I've already forgotten.  Anyway, they both occurred in India, and and he told me how to recognize it.  We had maybe a five-minute conversation about it and my fear was alleviated.

Okay, so far, so good.  At that point I was turned over to a Nurse who went over the schedule for the day and walked me to the first appointment.  The sequence of events went like this:

1.  MRI with and without contrast.  My rotten veins did not want to accept the contrast agent and the nurse had to stick me in four different places.  When she finally got a good vein she took the opportunity to draw all the blood they were going to need. Keep in mind, I was still on the MRI table with my head in the cage and the mask over my eyes so I couldn't actually see any of this (which was probably a good thing).

2.  Walk next door to the CT scan of my lungs.

3.  Peed in a cup.

4.  EKG and attachment of a Holter Monitor.

5.  Expanded Disability Status Scale (EDSS) test.

6.  The Multiple Sclerosis Functional Composite (MSFC) test.

7.  Low Contrast Letter Acuity Eye Exam

8.  Paced Auditory Serial Addition Test 

9.  Now it was examination time by the 'blind' doctor, who is not involved in the study, doesn't want to hear about it or my history, which was kind of interesting.  All he is supposed to do is evaluate me at that moment. It was a very thorough exam and when he was done he THANKED me for my participation and said it was people like me who allow advances in medicine to even occur.  Wow, huh?  That was such a nice thing to say, I think I might have blushed.

Repeat of #5 - 8.  

Then it was back to the car for the drive to a nearby hospital for the Pulmonary Function Test.

By now it is around 1:45pm and the next and final appointment for the day was in another building on the hospital campus in 45 minutes.  I stopped by the nearest cafeteria and inhaled a healthy-sized piece of quiche.  I think it was good.  I was so hungry and woofed it down so fast, I really don't think I tasted it.

Finally, the Ophthalmologist for an Optical Coherence Tomography exam.  According to a neurology web page, "This test is used to produce detailed images of the retina. It is much like ultrasound, except that it uses light beams instead of sound waves. Optical coherence tomography helps physicians evaluate problems with the retina such as swelling and holes, as well as abnormalities of the optic nerve. It can be useful in diagnosing and monitoring glaucoma.

During the exam, focused beams of light are directed into the eye. The light beams scan the structural features of the retina, producing a cross-section image similar to a topographical map. The test takes about 10 to 20 minutes and usually requires dilation of the pupils." (Author: Dale K. Heuer, MD; September 14, 2004)

I got home about 5:00pm, and managed to keep my eyes open until about 7:00pm.  At that point I zonked out and slept like a dead person until sometime after 1:00am. I'll take a nap early this afternoon and will hopefully get back to a regular sleep schedule tonight!

December 09, 2008

Pilates? What Am I, Nuts?

First off, I can't believe I haven't written anything in nearly ten days.  Just because I know my life is a snoozefest doesn't mean everyone else needs to know it too!

When this most recent flare-up started, I ceased doing any really challenging exercise, mostly because I was afraid I'd topple over. Since I have been feeling better and better, especially over the last couple of weeks, I decided it was time to return to Pilates class.

Ten in the morning on Mondays and Wednesdays.  I love it and always feel wonderful afterward.
Yesterday I went to class, not intending to try and exercise to the level I had been when I left.  I was pretty embarassed when class was over; I had not been able to get past 5 or so reps of anything.  But, at least I made it through the entire 55 minute class and I felt great all afternoon.

This morning I woke up and headed toward the kitchen for my cuppa coffee. Somehow, when I was asleep,  the placement and dimensions of my house had been altered.  Door frames were six inches off, the hallway was narrower, and the edges of every carpet had been bent upward.  How else can I explain the listing, tripping and bruises I received getting from my bed into the kitchen, other than little, gnome-like, nocturnal, sadistic carpenters? 

That's my story, and I'm sticking to it.

December 03, 2008

Market Survey

I'm in the database of an international research and data collection firm that has a local office.  Every few weeks they send out emails looking for people to participate in one study or another; could be medical or habits or entertainment or home stuff.  Anyway, I always try to participate in the multiple sclerosis-related things because those are usually paid (and who doesn't like a few bucks every now and then).

This particular study was participation in a small group to answer questions about what living with MS is like.  The obvious answer is, "It sucks, thank you for asking.  Can I have my check now?"

Of course it was not that easy.  And of course I didn't write down every question asked, but I met three very, very nice people.  There were four of us on this panel with a moderator who interviewed us.  Three women and one guy; I guess two in our 30's, one in her 40's (that'd be me) and one in her 50's.  We got to talk about ourselves for nearly 90 minutes.  What fun!

All we were told about the study was that a pharmaceutical company was researching the development of a new treatment for MS. I'll never know who, but it is nice to know that drug companies are still even interested! 

By the way, I walked out of there with a check for $125 in my purse.  Sweet!

December 01, 2008

The Flu Shot

I bet it's been 10 years or so since I last had a flu shot.  I remember they were being offered at no charge where I worked and I my boss was in line with me.  I also remember getting a little snarky a few days afterward, but it wasn't too bad.  However, about four to six weeks later I came down with a flu that knocked me flat for over a week.  Haven't done it since.  Until last Wednesday, when one of the research nurses, responding to an email from me, said they really wanted me to have one.  So I made the appointment and got it done this afternoon.  I'm anticipating nothing happening.  Here's why:

The MS medication I've been shooting up with since August of 1998 is an interferon.  The primary side effects of interferons are "flu-like" things such as fever, muscle aches, chills, blah, blah, blah.  I learned tricks to minimize the effects, like popping Tylenol or Motrin prior to the injection, or doing the shot at night in  an attempt to sleep through the worst of it.  I've even gone so far as to get shitfaced drunk so I could pass out!  Well, okay, I only did that once and the hangover was NOT worth it.

My point here is, I've been experiencing - or skating around - a remarkable facsimile of the flu, for approximately the last 540 weeks.  The vaccine ought to be a cakewalk.