Friday, October 5, 2012

What's all this about? How this blog came to be.

July 2012 was an interesting month.  We bought our forever house in June and through the stress of moving and me teaching summer school, I noticed but pushed away some alarming symptoms I was having.  I was bruising way too easily.  I had multiple deep purple bruises all over my body. And I was tired.  Super tired.  Let me sleep right here at this red light for just a minute tired.  Finally I took myself to Any Test Now  to get a complete blood count.  And just as I had feared, something was wrong.  I had a hemoglobin level of 10.3  --the reference range is 12-16. 

I've always been anemic, but just mildly anemic (11.6ish) .  This was something new.  Considering this with the fact that my platelet counts are always unusually high and its been suggested that I have Essential Thrombocytosis, I decided it was time to get a new doctor and a full workup, now that I have good insurance.  Before getting in to see the doctor I had a conversation with a woman who suggested that the symptoms I've been dealing with for the last year, and half --the hair loss, and strange body and face rashes might be lupus.  She suggested asking the doctor for an ANA test.  I had never considered lupus.  None of the five doctors I'd seen in the last year mentioned lupus. After all, I don't have any joint pain or swelling.  And no one in my family has lupus.

The ANA test was positive.  The physician referred me to a rheumatologist who tested me for everything under the sun and talked with me about my symptoms.  I have five markers of SLE -  a positive ANA test, anemia, malar rash, discoid rash and photo-sensitivity.  You only need to have four to be diagnosed with the disease. 

This was a real wake up call.  The rheumatologist let me know that no matter what happened from now on out, if I got pregnant it would be a high risk pregnancy.  He also informed me that I have Thalassemia, a genetic blood disease that has always been behind my mild anemia.  That coupled with the lupus is what has pushed the anemia into moderate terrority and other than steroids there really is no treatment for it (until it gets bad enough for me to get a blood transfusion).

In general, I'm healthy.  Now that I know that the sun is what sets off all the crazy rashes, my skin is healthy too.  But I've decided that with all of this unhappy genetic interference with my health, its best for me to get my shit together, eat in a healthy way and commit to some strength training too.

Cardio has been a mostly regular part of my life since 2005 but gods be damned if I'll do any strength training on my own.  So I got a personal trainer in mid July and I've lost 15lbs of fat since then.  5 or 6 lbs of glycogen go up and down the scale but the 15lbs of fat are real.

I'm lucky enough that "my" lupus really doesn't cause me any intense pain, but the last thing I want is to get pregnant, have a flare up and be unhealthy when/if I have a child.

This time its truly a lifestyle change. 

No comments:

Post a Comment