Thursday, November 17, 2011

BINGO Isn't Always a Good Thing

Well...I should always trust that I know what my body is doing much better than my Rheumatologist does. This past August I had a temporary period of time that I felt relatively good. It lasted for a short two weeks and it just so happened while I was back east visiting my girls. I tried to associate it with being in a different environment and maybe that is what would be best for my SLE. Unfortunately, about 24 hrs. after returning home I developed a terrible rash. "That's It", I thought. I am allergic to my house. This disease is tricky and I know that I spend a lot of time thinking of things that could be attributing to my disease process. Between September and November I began feeling really bad again, similar to when I first became really sick about three years ago. My rashes are bad, the joint pain horrendous, chronic headaches, severe fatigue, off the chart fever, etc. My knees have been the size of grapefruits and the color of pomegranates. Ignoring it is impossible.
Those of us that regularly see specialists for the management of this disease can understand when I say that our Rheumatologist can be our best friend and our worst enemy. Sometimes, I feel like I am arguing with her as to whether or not I truly have SLE whell all other doctors agree that I do. I had my regular visit on November 7th. My Rheumy wasn't too concerned with the symptoms that I have been having because she merely goes by the lab results and when the lab results contradict with the symptoms, she doesn't really appreciate how I am feeling. So, over the past couple of years it has been a tennis match with this disease. Well, because I was feeling so horrible these past few months my Rheumy wanted to run my labs for Lupus again. I didn't expect to hear anything from her office because they aren't too involved, but to my surprise and concern they called me twice! They NEVER call. The nurse said that my Rheumy wanted me to come in soon because my lab results weren't really good (in so many words). It turns out that my lab results show that my disease is fully active. All labs were highly positive with the highest positive results that I have ever had. This means that I am in a Lupus Flare.
I don't know why it surprised me and it threw me into a complete depression. It was like I was being told for the first time that I had SLE. I think it was the concern that my Rheumy is finally showing. That is both good and bad. I have so wanted her to take me serious because I feel like the disease is totally eating me alive but my labs were contradicting it. Now that we are all singing the same song my doctor is concerned. I am back on Plaquenil, which really makes me feel worse in some ways but the purpose is to slow down the disease process and that is worth trying.
If you are new to my blog, the way that my Rheumy is positive that I have SLE is by five criteria and they ALL have to be positive at the same time.
1. Positive ANA (you can be positive without any active disease)
2. Positive Anti-Smith (if you are positive on both 1 & 2 then you could possibly have Lupus)
3. Highly Elevated Sediment Rate (It is common for women to have a slightly elevated Sed Rate at different time without any reason).
4. Evidence of active disease (i.e., swollen joints, rashes, fevers, etc.)
5. Positive skin biopsy
This past November 7th the planets aligned and my Rheumy called BINGO! It is so frustrating to have any combination of these at any one time. Well, now my Rheumatologist has completely changed her angle of attack and she is fully engaged with trying to slow down the disease. I am a bit angry because I feel like I have lost three years to this disease that I could have been working on it through medication(s). On another hand I am thankful that I didn't have to take stronger medications for the past three years.
I am very sensitive to medications and they tend to cause more damage than good for me but when I get to this point, I don't have a choice. So, Plaquenil it is...again. I started it today and will be taking it slow to ramp up to the full dosage. I am now back to seeing my specialist monthly instead of every three months.
Managing this disease feels almost impossible. There isn't a week that goes by that I am not in a doctors office. I regularly see my Internist, Rheumatologist, Psychologist, Pain Specialist, Endocrinologist, have periodic trigger point injections, endure Lidocain Infusions, and spend a lot of time at the Pharmacy (my hubby does this for me mostly). So, if you are new to this disease I want you to know that it really takes an Army to manage this process. It especially takes a strong support system.
Today I am just trying NOT to cry because I am overwhelmed.

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