Wednesday, October 20, 2010

Walking this road... but not alone...

Due to not only the lack of knowledge of and exposure we Lupie's get, I thought I would start a blog about my journey with Systemic Lupus Erythematosis, Lupus.  There are three forms of Lupus - Discoid:, which effects the skin, Drug Induced; which is brought on by certain medications and SLE- the most common that effects the skin, but also has other involvement as well.  SLE is not very widely known and I have suffered from, fought against and dealt with this since 1998.

I was the director of the daycare in 1998.  I had started there in October of 1997, and in June of 1998, we held a garage sale fundraiser.  It was a long, hot, tiring day and when it was over, I went home and crashed.  I slept most of the afternoon and woke up with a high fever.  I tried the rest of the weekend to get it to go down, nothing worked.  I made an appointment with my family doctor the following week and they started drawing blood and running tests - they were convinced it was Tick Fever - that is the main test they ran - repeatedly.  I was given several things to try and break my fever - nothing worked.  Along with my fever, I had severe nausea and was very sick to my stomach for a good part of the summer... nothing stayed down.  I lost a great bit of weight.  I honestly lived that summer on slushies from a little hole in the wall burger joint down the road from the house.  I also lost a lot of hair - not very patchy, but much of it came out.  I don't remember having any face rashes, nor do I have that written in any of my notes, which could explain the reason that Lupus didn't come up earlier - no telltale sign of it.  My iron level was extremely low and I was put  on iron supplements at the time as well.

Over the period of a year's time, I visited several doctors and had several test's ran - blood, big machines, breathing, large needles in the back - you name it - I was tested for it.  The only thing that I was tested for more than Tick Fever was HIV.  Everything came back negative and the doctors were unsure about the whole situation.  My actual Lupus journey begins when the family doctor was worried that it may be Leukemia and sent me to an oncologist.  After a battery of tests there, it was the oncologist who felt I was dealing with Lupus and he sent me to a Rheumetologist.  My first visit with the Rheumetologist was intense and LONG, but when I left, his last words were *I don't think it's Lupus, but let's see what the test results say*.  Two weeks later, he was just as surprised as I was when he told me that it was for sure Lupus. He also didn't understand my excitement in *finally* getting a diagnosis, *finally* getting somethings I could work with!  Basically, they continued to treat the symptoms, but at least we knew what was causing them.  It was a HUGE relief on everyone to know what we were dealing with.

This what May of 1999.  It took almost an entire year to get a Lupus diagnosis and start the proper treatment.    Once I got the *label* I was started on Plaquenil and a low dose of Prednisone. Apparently this worked for my body to start feeling better, because by August, I was pregnant, after trying for almost 4 years. Here is my *twin story*.  My entire pregnancy, I was doing OK, no spells of being sick. Even after the twins were born and were in the hospital for a month, a highly stressful time, I had no flares.  When we brought the twins home & our house flooded to the point of having to move out at the same time, another highly stressful time, I still had no flares.

I went for a couple of years with no flares.  This is a start... I will continue my journey with Lupus in another post.

1 comment:

  1. Lupus and Mastocytosis share a lot of similarities. I think the hardest is people not understanding why you feel bad or you yourself not understanding because of lack of a diagnosis. I hate that my kids got my ickies, but at least I know what it is.


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