I Consider Myself Lucky

I consider myself really lucky. The time period from when I started showing signs and symptoms of Lupus to the time period where the signs and symptoms were really bad to the time when I received my diagnosis was a relatively short period of time when I read and listen to others stories. It was less than a year. I guess the planets had aligned just right that I was in the middle of a flare when I went to see my gynecologist for my annual exam. I told her all my girlie parts were working just fine but it was some other random and odd stuff that I was concerned about. When I went through the crazy mixed up list of stuff she said "It sounds like either Lupus or Rheumatoid Arthritis to me. You need to go see your primary care physician." To which I responded "I don't have one, who can you suggest?" It took a day to find one that was accepted by my insurance company, that was taking new patients, and wasn't one that someone had told me to stay away from. My hometown is sort of small and options are limited. But again, the planets aligned just right and the Lord smiled. At my appointment I explained my list of odd and random symptoms and mentioned what my gynecologist had suggested. He decided not to do anything further without getting the full battery of blood and urine tests done. Of course it helped that the rash across my face, neck, chest, arms and back was blazing red that morning, I was running a slight temperature, and it was evident that I was losing hair. When I returned with the results his first words were "Yep, its Lupus. Look here, you've got all the markers. I can't help you with any of that, you need to go see a rheumatologist."

For a moment the planets unaligned in that I could not get into either of the local rheumatologists. One scheduled me in September (I was calling in April). The other, which was the one I really wanted to see, wouldn't even schedule me. The best they would do is take my name. My insurance was not contracted with any of the rheumatologists in El Paso, TX which was just 45 minutes away. I ended up scheduling to see one 10 days later in Albuquerque, NM which was 3 hours away. He was awesome. The man spent 2 hours with my husband and I. And the few minutes that he had to see another patient, he left reading material for us, then reviewed the material when he returned. It was the most incredible doctor's appointment I have ever been too. He noted some concerns on the labwork and we scheduled to come back the next week for additional testing and kidney biopsy. The planets aligned again and that didn't happen.

The day we should have left for Albuquerque, I ended up in the ER and later admitted to the hospital to treat a kidney infection. I spent a week there and against my doctor's wishes, left on Mother's Day so that I could celebrate with my children. Eight hours later I had to return, by ambulance, where I was admitted and spent another 12 days. Why is it that I say the planets aligned again and the Lord smiled, because the rheumatologist that I had wanted to see all along was called in to consult on my case, along with one of the best nephrologists in our small town. Both of them kept me on as a patient after I was discharged. Find the silver lining, right?

After 12 days of poking, proding, an echocardiogram, a chest x-ray, rest, fluids, antibiotics, steroids, and a blood transfusion, my body was finally strong enough, barely, for the kidney biopsy. I love my nephrologist. She came in one afternoon, very matter-of-factly said she had received the preliminary results of the biopsy and it showed Stage 4 Nephritis. She briefly explained what that was, what would happen if I didn't pursue treatment, and then started explaining the two options for me. "Wait, wait, wait. Slow down. Start over so I can take notes" as I was frantically reaching for the notebook and pen my husband had left me. She again explained the two treatment options to me, and that while I didn't have to decide at that moment I did need to decide relatively quickly. Both drugs are pretty potent and have their own lists of side effects, none of which are very nice. I was looking at about a two year treatment window, oh and I wouldn't want to get pregnant while on either of the treatment options. Wait, what? We were supposed to start thinking about that. I had even talked to my gynecologist about what I should be doing to get ready. My body at 34 is much different than the body that gave birth to my babies 10 and 12 years ago. What do you mean I can't get pregnant for 2 years? You don't understand, my husband and I are newly married. We haven't even celebrated our first wedding anniversary yet. That isn't part of our plan. It wasn't part of our agreement. He's given up smoking and doing awesome. No, no, no. I'm supposed to be starting to take prenatals and the folic acid and start exercising a little better. And then we'll start trying later this summer or fall. You're screwing everything up!!

She left. I cried. I looked at the hastily scribbled notes in front of me, tried to add in some more pieces for when my husband came to see me after work. Then I cried some more. My life had suddenly changed in so many ways, I couldn't even begin to fathom.