Friday, September 18, 2009

Finding out

So, it has been confirmed. I have lupus. I've suspected for a while now but it took a seizure for the doctors and everyone else around me to confirm. On August 31, 2009, I finally convinced my Rheumatologist that the continuous high fevers weren't normal. He prescribed Prednisone which is a steroid generally used during lupus flares. He told me to use it for six weeks and then come back for a follow-up. The medication started working almost instantly. Within two days, the fever was gone.

Unfortunately, the improvements were not to last. On September 8, the first day of Kindergarten for my son, I had a seizure in the kitchen as I prepared breakfast. My son witnessed my collapse to the floor and ran to get my mother-in-law (whom we live with). She called the ambulance was called as I lay on the kitchen floor in a dazed sort of phase.

They took me to the hospital, ran a CT Scan, MRI, Lumbar Puncture and a series of various blood tests and confirmed that the seizure was most likely caused by lupus which I most certainly had.

It's funny how there was a sense of relief in knowing that I had something and that the fevers weren't arbitrary. Now I am on 15 mg of Prednisone for the lupus flare, on 500 mg of Keppra for the seizure and on hydrochloroquine for the lupus.

I'm back home but there are a number of restrictions on my life which I'm still trying to deal with. For starters, I can't drive because of the seizure. I haven't received the official letter from the Ministry of Transportation yet but it's just a matter of time. Secondly, I have a cold so my ears are blocked almost constantly as long as I'm vertical. I can be lying down or on my belly and my ears are fine. Any time I walk around, they get severely blocked and I can't hear anything. This is really starting to bother me now, almost a week later. Third, I probably won't be able to go back to work anytime soon and will have to apply for long term disability. The sense of complete helplessness is threatening to consume me and this blog appears to be the only way to cope.

I want to have another baby. I had two miscarriages, probably both attributed to the lupus in September 2008 and May 2009. The disease needs to be under control before I can consider conceiving again. I'm not quite sure what "under control" means but I do realise it's going to be a while.

For now, I just have to take it one day at a time. Next steps are getting through Eid, which is on Sunday, and interacting happily with the family. And completing the LTD forms that my employer sent over to me yesterday. Once I get through those, then I have to focus on Camran, my son. I've been sort of mean to him lately. He's just dealing the best way he knows and sometimes that means he doesn't always listen to me and I get frustrated and mad. Unacceptable and I need to work on that.

I think that's enough for now. I'll keep you posted.

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