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Hi, it has been a while since I've been here, just wanted to check in, specially after reading the post about siliconvalleygirl and tell you how I'm doing and what i'm planning to do.
Just to so everyone is on the same page here is my story..
I was diagnosed 2 years ago in July, with counts of 8k, given 80 mg of prednisone for a couple of months, and starting tapering. Unfortunately my counts couldn't or wouldn't stay in the normal range once I got down to 10 mg. So I convinced my doctor to let me try raising the dose to 20 mg and slow down the tapering process. I was on pred for a total of 11 months. Sure enough my counts began to drop the first few months after I stopped taking pred. I had no energy and felt like a lump on log. However, eventually began to stablelize on their own. No change in diet, exercise or vitamins just following my normal routine, they just stopped falling. To my suprise 5 months ago they actually went up on their own and got above the red line that indicates that they were in the normal range. The following month they got a little higher and got to 160. I now get tested every other month instead of once a month and last week they were at 189. I have energy once again.
Sadly though, this July I broke up with my boyfriend of 4 years, I'm not going to go into those details, but I know the prednizone (mood swings), feeling exhausted eventhough I appeared normal, and depression didn't help our relationship. Feeling a little derailed by new status, I'm doing what some people do to cope and after checking with my doctors. I'm going on vacation. I've never been one to sit by the pool side with a fruity beverage. So in a couple of months, I'll be hiking Kilimanjaro in Tanzania. I'm excited about the trip, I've never been to africa.
I hope this post encourages anyone who is waiting for the light at the end of the tunnel. Normal counts do happen.
Hello Michel, Glad to hear that your doing well. Thanks for the words of encouragment. Have fun on your trip and even though your counts are up.....be careful!
My flesh and my heart may fail, but God is the strength of my heart and my portion forever. Psalm 73:26 Blessings, gretchen
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