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My journey so far

Posted Jun 20 2011 3:37pm

About 2 months ago I was diagnosed with Lupus SLE after 10 years of thinking I just had fibromyalgia and over 15 years of wondering what was wrong with me. When I left the doctors office, I was terrified.

I've been working very closely with my rheumatologist, weekly visits, lots of medications. I've gone through a world of tests and tons of blood work. At this point I think we have come to a rather good point. I am on a good cocktail, slowly working our way through symptoms. I am having issues keeping my hemoglobin levels up, currently I am hovering around 10 and my doc said that if I hit 8 I will need a transfusion. Thus, I get to have my cycle stopped by my OBGYN, YAY! Small things make me happy right now. Hopefully that will do the trick though. I do NOT want to go through a transfusion.

My family is being super supportive. My husband has been to several appointments with me and so has my mother. My hubby helps with the little one (I have a 6 month old) when I am having a bad day. My daughters day care helps when I am so weak I can't carry her to the car, or just in too much pain. Oh yeah, I have neuropathy as well, over most of my body.

I know this is a jumble of information but it's all been given to me in a jumble. I go in tomorrow for 3 more doctor appointments and more tests and test results. Hopefully I will get good news!

light and love,

Alysa

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