Wednesday, December 6, 2006


     Where to begin?  I suppose breathing would be the best place to start...

     It's been a long day.  Oddly, still only 24 hours of time passing, but feeling much longer than usual.  Of course, having horrible insomnia really DOES lengthen the time it takes those grains of sand to fall in the hour glass! LOL

     I made it to my appointment with Dr. She Who Will Not Be Named and was even on time, in spite of my current mobility issues...thanks to a friend carrying me around town and making this transition just a bit easier.  I always have some concerns at Dr. SWWNBN office when the front staff don't even have to ask my name anymore...somehow this seems a bit "too" familiar at times.  LOL

     As usual, Dr. SWWNBN was on task, informative, and instructive.  We spent a good deal of time discussing treatment options, treatment failures, treatment goals...treatment, treatment, treatment.  Which seems kind of an oxymoronic idea for a disease there really is NO treatment for...only symptom management...but such is MS.

     My eyes glazed over as my second toad lid slid protectively in place when the good doctor began mentioning terms like, "walker" and "disability" and "physical therapy"...I instinctively just tuned her's just what I do.  I'm not at a place to hear or incorporate such ideas into my life...I STILL do have one, after all...a life, that is.

     "We" don't know why my MS has kicked up her lovely heels and started punching holes in my brain this past year..."we" don't know what may or may not arrest or slow this process..."we" have no clue what my prognosis is..."we" DO know I'm still RRMS because I don't have enough said permanent holes (black holes) being left in open spaces to change my diagnosis at this time...but "we" also can't explain why Christmas has come early in my brain with a string of gadolinium lit spots that would put Chevy Chase's, "Christmas Vacation" home to shame (a movie reference, folks...I'm reaching here!).

     So...the PLAN.  I have to have a minimum 3 month "wash out" period from the Tysabri infusions (last one with the anaphylactoid response was November, so we're looking toward mid February, 2007) to be enrolled in the FTY720 (otherwise, and hence forth referred to as the "Star Wars R2D2" drug) drug study Dr. SWWNBN is managing/monitoring.  Pulse IV Solumedrol will be added monthly until enrollment in the new study begins.  It's a 50/50 shot I will get the drug as it is a double-blinded study.  I'll be monitored monthly and, if it appears there is continued worsening of my MS/lesions, I'll be "bumped" out of the study and placed on Novantrone and/or placed on a combination of Cellcept along with another disease modifying therapy such as an Interferon. 

     These are the choices I have available to me...these are the choices Dr. SWWNBN assures me SHE would choose if it were her life.  Gotta love the frankness of THAT approach!

     In the meantime, the vertigo remains, the insomnia makes sand of my eyelids, the fatigue makes me stupid,  and I am considering amputation of my left leg as I have grown tired of dragging it along with me everywhere I go...I HAVE another one, after all!?!  How many do I REALLY need???  I am also supposed to schedule physical therapy with someone the good doctor uses who specializes in treating PT MS patients...this should be "fun".  LOL 

     I am hoping at the very least (that is, if I get to CHOOSE a symptom to lessen or go away!) the vertigo lessens soon as I am a bit leary of growing dependent on Valium to control it...if only I were a rock star...I mean, look how well Stevie Nicks did on Vicodin and Whitney Houston on Cocaine?

     Off to practice my vocals just in case the Valium becomes too permanent...


sonyasuzanne said...

Damn I've missed out alot of things going on with you.  I guess I felt that you werent blogging since our last conversation and so, needless to say, I haven't checked your blog.  My exhaustion has overcome me yet thoughts of you are constantly on my mind.  I know that sounds so cliche', yet it is the truth, silly as it sounds.

I was going to email you, but I see you've been blogging so much, which is a good thing, seems I heard something different in your voice this past weekend.

I want you to know that even though I worry about you, I don't know what to say half of the time.  It's almost like no matter what I say, it still won't do shit to stop what you are going through.  The 'hang in there', 'you are strong', 'this too shall pass', just doesn't seem to cut it.  I told you on the phone that I wished this would stop and you wished that too, and it doesn't seem to want to back off and leave you alone.  This pisses me off more than I can say.  I pray for you.  Bill and I pray for you in the morning, before he goes to work.  I tell him all the time how worried I am for you, and then I think 'what does that say about my faith'?  I do have faith, however I can't seem to say the right words to you.

( I wrote much more, yet your blog only allows me 2000 characters....darn, I didn't count as I the rest of this comment is on your earlier post....ironic that this made me laugh, isn't it????)

mdmhvonpa said...

Man, you've been having a rough spot with those treatments.  Of course, when I read 'second toad lid' it translated to 'Second Toad Lick' and I said AH-HA!  She is addicted to toxic toad secretions ... that's what the problem is.  Woman, just put the toad down and back away.  It's going to be ok, we have programs for this type of thing.  First thing, we need to wean you off by having you KISS the frog with 1/1000 chance of winning a prince.  Then we will move you to toads that only secrete Methadone.  We'll get through this ... ;)

hagartyjj said...

I'm with Suzy.  I am at a loss for words but you are in my thoughts and prayers.  After a while all of those "it will be okay....hang in there's" blend in.  If only I had a magic wand to go along with mdmhvonpa's toad.  Then maybe we could make you all better!  lol  

Take it easy and if you ever need anything you know how to reach me.  I am only an email, blog, or phone call away.  Get well soon!  

btw...I don't drink coffee either.  ;)

harkoo said...

I have just finished researching gadolinium spots as seen in the brains of ms patients and i am just as glad i never knew about them before this.   The benefit of being alittle older and having incompetant neurologists who never had me take those MRI Tests!   Sounds like you have a very competant neurologist familiar with current treatments--must have been an intense appointment and it sounds like you can trust her advice.  If only you could get a good night's sleep so your brain can sort it all out.