Wednesday, June 30

MS Diagnosis

I've been gone for a while.  I've been super busy at work and haven't known my ass from my elbow for a while, but the project I was working on is done so I'm back.

I had lunch with a newly diagnosed friend and his wife the other day.  I have to say that i've read/heard some stories of people's journey toward being diagnosed and again, I AM LUCKY.  I went to a neuro in January and I was diagnosed with certainty in May - after a slew of testing.  I've heard stories of people not being diagnosed for YEARS and YEARS.

So they start telling me his story (luckily for him he was diagnosed within no time too) and it got us to this day and age doctors really need to get with the program.  Anytime someone enters their office and they have symptoms that don't seem to link to anything they need to immediately start thinking of MS and start trying to rule it out.  It's not right that patients have to suffer through an undiagnosed/misdiagnosed sickness and listen to an asshole doctor who might be trying to prove that (s)he earned her medical degree when all of us out there (diagnosed folk) can say, "oh yeah, that's classic MS!"

Friday, June 11

Loss for Words

well...things are stable, so i really don't have anything to report. 

That's a good thing! 

I spoke to a nurse at my doctor's office (about reverting to not being able to be upright for too long since taking the Tysabri) and she told me to just let the medication do its thing.  I honestly think (what with my medical degree from the internet and all) that my body is just trying to adjust to all the various medications in it and I'm not too concerned.  I've been moitoring how things go (the one thing that I do all the time, dealing with this disease) and if things get really bad (worse than before), i will make some moves.  So for now, all is "well" and i'm just trucking along.

Monday, June 7

Infusion #1

it went well!  No horrible side effects, no horror stories - NOTHING!  whew!!  Actually, the infusion itself was supposed to take an hour...I, of course, was done in half hour but they assured me that wasn't anything to worry about.  They still kept me for observation afterward and I was a little woozy at the end but it was because i had taken 2 Tylenol PM Xtra Strenght before the procedure.

so I've mentioned before that i donate blood regularly and I've also mentioned how much I hate needles.  Everytime blood is taken from me, for whatever reason, i tell the nurse/attendant/whatever that they have ONE shot and that's it; no do-overs, 2nd chances NOTHING! and no-one ever has a problem....i've heard some horror stories about rolling veins and on Friday, the chick tells me that they are going to take blood and then set up the IV blah blah blah...I say okay and nothing else, she was a bit of a talker so i didn't want to encourage her; let's just get this shit started already!  She put on the torniquet, started tapping the vein and feeling around for it, stuck the needle in and NOTHING!  WTF??!?!?  the vein, as she put it, kept running away from  really???  and she started poking around, "trying to catch it"...i couldnt believe it...i should have threatened her like everyone else!!!  eventually, she had to ask someone else to do it because she never "caught" this time, i'm thinking i CANNOT do this again, so this one better get it right - she did and we started the process...

My Arm w/all the IV Tubing

I stayed in for the most part this weekend but I have noticed that either my body is trying to get used to this additional medication or something, but it almost seems as if the Tysabri is now negating what the Ampyra was doing.  I'm not dragging my feet but somehow i can't stay on my feet as long anymore.  UGH!  i called my doctor's office to talk about that and left a more to come


G2 walked all 50 miles...I'm so proud of her!  She did good :-)

Thursday, June 3


How could I forget...

G2's walk is this weekend...let's also wish her luck across the miles, oceans, continents etc :-) we go waaaaaaaaaay back; this is an old picture - i had hair!

Happy Times!

Had dinner with my fellow MSers last nite.  we had a really great time and it was good catching up with them - i haven't seen then since the end of the seminar.  We exchanged war stories of the past few months, laughed, they commented on my walking and just had an overall good time.  I've said it before and I'll say it again, my friends and family are the best at supporting me and making adjustments etc, based on my needs but there is nothing like talking to and swapping stories with other MS "sufferers".

Anyhoo...tomorrow is my 1st Tysabri infusion; I have to admit that I am extremely excited.  I am hopeful and staying very positive about what this treatment can do for me. 
  • The risk of the brain infection is in the back of my mind, but way way back; I'm not going to lose sleep over it.
I'm already enjoying NOT sticking myself fact i was supposed to be off of it for 2 weeks prior to the infusion, but i stopped it about 3/4 weeks ago :-).  I go in at 1:00 tomorrow afternoon and will be there for 3 hrs (pre-infusion work/infusion/monitoring) - honestly, i can think of a few better things to do for 3 hrs on a Friday afternoon - but hey!  I chose a Friday afternoon so that I have the weekend to recuperate if necessary.

Wish me luck (from across the miles, oceans, continents etc)!!!

Wednesday, June 2

Buss Meh Ass...Again!

So...falling down is a regular occurence with some sufferers of MS.  I've mentioned in a much earlier post that I used to fall down all the time growing up (maybe that was a clue?). To this day, my father will tell anyone who will listen the extremely story of my falling on Frederick St! At any rate, falling is jes one of those things that i have to deal with - between my dragging feet and lack of strength sometimes - anything is possible.

So i fell "up" the steps on Monday.  I think I've mentioned before i have 32 steps at home to contend with (3 story townhouse) - one of my mother's dreams is to win the lottery and buy a flat house for me. At any rate, I was walking up the 1st flight of steps (entrance to the living room area) after a long drive (I could actually feel myself getting tired as I drove) and at the very last step, I didn't lift my foot high enuf to step up and u know it - buss meh ass right there.  I was carrying 2 bags at the time, so naturally they went flying - luckily i feel forward not back! 

Now what is it about when I fall that I immediately start to laugh hysterically (even if i'm alone)!!!  Maybe that's my way of dealing with any embarrassment, maybe it's because I am able to laugh at myself - who knows - but i fell and immediately started laughing HARD!  I have a friend staying with me these days, he must think that I am a mad woman because every single time (of course I've fallen at home before) i fall, i laugh like crazy.  This time i was laughing so hard that he actually helped me up because it was obvious that i couldn't help myself too much at the time.  UGH - f*ckin Multiple Sclerosis!!!