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12-20-2008, 01:14 AM
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#10 | |||
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Hi everyone,
Thanks Sally for asking - I finished 6 days of IVSM on Thursday evening. I did 3 days @ 500mg, then 3 @ 1000mg. Oh man - the previous two times I had IVSM I sailed through it. This time - not so much. I mean, it wasn't hard - and the catheter actually stayed in one hand for 4 days and then 2 in the other, so that is good (and my arms don't make me look like a junkie!)... but emotionally, it is taking a HUGE toll on me. I'm sure it's a combination of the devastation that I'm feeling on top of the actual feeling sick. I want to stick my head in the sand - I feel physically worse every day and just hope that the steroids provide some relief. I am going out to Hopkins on January 12th. Actually, they offered for me to come in on Monday - but I can't swing it that fast (with being sick and already doubting my ability to travel on Wednesday for the holidays). The doc said there were options for me - so obviously we will discuss those in detail (and I will report when I know more)....but my guess is - I will re-dose on the HiCy....and my other (non medically trained thought) is that they may find doing two treatments of HiCy to be a good protocol to make sure they knock out all the MS garbage from the immune system. I have only one regret with the HiCy so far - and that is that I didn't do enough with the 4 months of freedom that I had. I should've used that time to get healthier, exercise more, eat better, lose weight, etc. I know I just need to look forward now, but once again it's so hard. I didn't expect 2009 to come in the way 2008 did.....I know - unlike many of you here, I've only been dealing with MS for a year (almost a year anyhow)...and I feel like I have NO right to complain.....but I guess with all that the docs have told me regarding the path that my MS has taken and how aggressive it is - I dunno...it's hard not to think long term and that this isn't going to suddenly become a benign course for me. Does that make sense at all? If not, my apologies - just took pain meds for bad headache. Any minute now I hope to stop being on the verge of tears - as I have been for a week now. Devastation doesn't quite cover it. I just learned that I'm only the 2nd person out of the 29 who had HiCy who actually re-activated (with new active lesions). Okay, going to lay down again. Thank you all for your good thoughts.....and I will keep up the "good" fight for as long as I can......and I will be a lab rat, too....and hopefully we will find a better path for all of us in this world... ~Keri |
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