Friday, November 11, 2011

Feeling Better

It's been three weeks since my first Procrit shot.  I feel like it has given me more energy than before, but I still don't feel "normal" or how I feel like I should.  It has helped me in that I have some energy to run a quick errand or go out to dinner after work.  I used to be wiped out and in bed by about 7 pm, but I can stay up until 9-10 now.

I went to see Hemey today and my bloodwork confirmed that my hemoglobin did indeed go up, which is the good news.  The bad news?  I am at 10.9...once I hit 11, I can't get the Procrit anymore.  I know I should be grateful for what I have, but a part of me is a little pissed that this is the best I can get.  A level between 12 and 15 is considered normal, but since I am "good enough to survive," I don't deserve better?!  Hemey dropped my Procrit to 4,000 units weekly (previously I was at 10,000 units weekly) to try to keep my hemoglobin at the same level.  If I go above 11, I'll have to stop taking the Procrit for a while.  Hemey said that the lowest dosage they give is 2,000 units every other week and the highest dosage is 60,000 units every week, so I am on the low side.

Oh, how I'd love to just feel "normal" again...

- a little lupie -

Saturday, November 5, 2011

Grand-lupie?

When the doctors first suspected that I had lupus, they all asked if anyone in my family had lupus.  I said "no," because there was no one in my family that was diagnosed with lupus.  However, now I am realizing that not being diagnosed does not mean that they didn't have lupus.

In particular, I have been wondering if it is possible that my grandma had lupus.  She died of cancer, but I remember her dealing with joint pain, fatigue, and low blood count.  This was all before I got diagnosed with lupus, so I couldn't relate to it, but now that I think about it, it all sounds very similar.  In addition, a study has shown that patients with lupus are 15% more likely to develop cancer than the general population.

What makes lupus so difficult to diagnose is that it's symptoms are so similar to other diseases.  Is it possible that lupus was overlooked by doctors because they could just as well explain these symptoms as being caused by the cancer?  In my grandmother's day, a lot less was known about lupus, so it may not have even been something doctors would consider.  Although lupus is not necessarily hereditary, researches believe that there is some kind of genetic link that makes one more predispositioned for the disease.  Now, I'm not saying that my grandma had lupus, but I'm just thinking that it could be possible.

- a little lupie -