yes...I have more to say

I really need to go to bed, and Jason is pacing around me...either waiting for the computer, or waiting for me to go to bed (he needs me to check for monsters under the bed before he gets in himself). But I feel as if I have more to say to you, and it just didn't fit in the other post.

Yesterday evening, I received a telephone call from my MS doctor. He wanted to tell me that my blood work is still off (however my liver enzymes are consistently high, then lower, then high, then lower...which is acceptable to the hepatologist). My platelets are high, my hemoglobin is low...and a couple of other things.

Rebif, a beta-interferon, has been known to LOWER platelet counts, not RAISE them. From what I can figure from the conversation, he is strongly suggesting that I stop the Rebif and go back to Copaxone. Either he is getting tired of monitoring my ALT and AST every month, or he feels that since Rebif has some effect on my blood, maybe it is just best to stop it all together.

His phone call upset me. Number one reason, I don't want to hear that I should change my drug...in my opinion, it works! Not that we know about my lesion load, but I certainly don't seem to have had any relapses while on it.

The other reason that it upset me is that I just want to be left alone. I don't want any more problems with my body! I don't want any more doctors! I just want to live my little life in peace. Find happiness and contentment in my new reality. Discover things that I can learn within my four walls...grow at my own pace, and within my abilities. Be open to change if necessary. Do things that I can be proud off, and make me feel worthy.

And what do I have to do today...I have to check in with the "extra" surgeon who was called in for my laprascopy last month. His job is to determine what went wrong that awful week in August. He isn't even convinced that my appendix burst. All he knows that I had one memorable and gross abdomen...but why...is a mystery.

So in order to investigate, he is performing a colonoscopy in November, and another CT scan sometime before that (to compare to the previous two that I had in August). This isn't my first colonoscopy...and likely not my last. Intestinal problems are in my genes. This time around, biopsies will be taken of the intestinal lining. So much for "A-Ok" three years ago! I also need to request from my GP that I see a hematologist (blood doctor).

My shell is cracking. I am finding it harder and harder to "roll with the punches", "take it all in stride", and live "one day at a time".

So I'm going on a small holiday...because my schedule is clear (hehehe when is it not, but for doctor appointments). Jason and I are travelling to lake country for a few days. Jason is gung-ho, and I'm a bit begrudging...but I'm "taking one for my wonderful team". Jason takes a lot...I might even let him win at Scrabble...but not Trivial Pursuit!

Talk to you when we return,

Emily

1 comments:

~ Charlene S Noto said...
September 18, 2008 at 2:24 p.m.

Oh, I hope you have a wonderful time! A change of pace sounds like a great plan. One suggestion? Try to get hold of the book, "MS and Your Feelings" by Allison Shadday, LCSW. My friend gave it to me and it's very helpful for dealing with those ups and downs. Good luck and have fun on that trip!

Little bits about my life with MS

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