Certainly I can identify MANY recent stressors in my life...from health to finances...but none seem quite overwhelming enough to cause me to lay awake at night fretting or worrying. I have had about 4 nights now of tossing and turning...finally last night, I simply drugged myself into a reasonable 7 hours of sleep. Of course, not without the added effect of a daytime "hang over" from benzodiazapines!
I know my recent near Novantrone debacle created an entirely new set of concerns for me as far as my healthcare delivery system goes...I am suffering from a lack of faith now. LOL And, on top of my need to now question EVERY LITTLE DETAIL where my health/MS is concerned, I have also realized I am only 3 doses away from using up my entire package deal of life time Novantrone...this IS a stressful thought.
I have been toying with ideas of "what next"? What is left for me on the tiny buffet table of MS treatments? "Not much", is the repeated answer that comes to me. I've done the Copaxone...didn't slow the MS down a bit. I did the Avonex...Interferons make me too sick. Which also rules out Betaseron and Rebif. I suppose I could try them, but at what risk? Do I really want to spend the majority of my waking days feeling SICK and/or FEVERISH? And my Avonex fevers were in the 100+ degree marks...as high as 102. That CAN'T be healthy or helpful.
Tysabri got ruled out FOR me...not because I wanted to stop taking it, but because Dr. She Who Will Not Be Named reported my "anaphylactoid reaction" to the TOUCH Nazi's and they allegedly cut off my supply. My most recent conversations with Dr. SWWNBN about the matter indicated there "might" be a possibility I could restart the Tysabri...but I'm not holding my breath on this one. I'm afraid my doctor and my body may have "$h!+ the bed" on this option, so to speak! LOL
I DID 5 rounds of IVIg...I still have no idea at all if this was helpful or not...Dr. SWWNBN tends to think it was NOT. The Rituxan Study I participated in was a flop...at least MY results were. I still do not know for sure if I received 2 doses of the drug. But regardless if I did or didn't, my MRI scans worsened drastically while IN this study. FTY720 has not even NEARED completion of its final testing, which means a few more years out for FDA approval...if it works.
This leaves me with the unpopular choices of monthly IV pulse Solumedrol, Cellcept, Cladribine, or Plasma Pleuresis (suggested by Dr. SWWNBN, which I have never heard of nor can I find any information about it?!). I simply do not like any of these choices.
But there IS that remaining choice of doing N-O-T-H-I-N-G. Just rolling my life's fuzzy dice and seeing where my numbers fall. The medical professional in me balks at this choice, too.
So, as you can imagine (or if you can't, give it a try! LOL), these thoughts are rolling around in the back of my head like waves on a stormy ocean. I am trying to remain calm, cool, and collected...but I find myself wandering down this most darkened lane of thoughts late at night! And, if I toss on other variable thoughts concerning my financial stability (I DO still have medical expenses in spite of my gold pass card Insurance!), employment issues/concerns, AND generalized physical "blah" from my recent Novantrone infusion...I am just NOT a barrel of laughs these days.
Oh yeah...AND I'm turning 43 next week. Woe is me...LOL...
(ALSO...PLEASE IGNORE THE COMMENT LEFT BY KNICKSGRL0917 IN THE COMMENT SECTION OF THIS POST. IT IS A SHAMELESS AD FOR SOME STUPID "TAKE A SURVEY" CRAP AND I DO NOT KNOW THIS PERSON)