About Me

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I was recently diagnosed with Distal RTA & Sjogren's Syndrome, which has been a spiritual wake up call for me. I decided to create a blog to empower myself, educate my family & friends and create support for others. I live in Central Florida with my partner, my 10-year old son, an epileptic pug and a rescued cat. I am mecurial, sensitve, passionate and intense.

Friday, December 23, 2011

My Doctor Situation

Yesterday my mom sent me a text asking how I was feeling. She was especially wondering about my leg pain and was wondering if it was better since the doctor said he thought it would. It made me realize some things I hadn't told her and others close to me. I would like to share it here as well.

The doctor who diagnosed me in the hospital is a nephrologist and he is the only doctor I am seeing at the moment, as I do not have health insurance (I've applied for Medicaid and we're praying it comes through). He did say my leg should get better and this is because of the immune-supressant he put me on, but it is not a guarentee.

He will be the doctor I go to for any issues dealing with the RTA and for now he will monitor my blood in relation to the auto-immiune suppressant since he prescribed it. Normally a rheumatologist diagnoses Sjogren's but since he discovered it and I can't afford another doctor just yet, he is treating me right now. When the insurance comes through I'll be seeking out a good rheumatologist. Anyone know a good one in Central Florida?

The reality of Sjogren's is that it is systematic and the meds we use may not stop it but slow it down. Plus I may have to try different ones or combinations until we get the right one for me. In addition, the rheumatolgist will be able to do other tests and make other diagnosis of other things that go along with Sjogren's. For example he and I already know that I have peripheral neuropathy as well, but in order to properly diagnos that there are other tests a rheumatologist or neurologist will have to do. Although I love my nephrologist and will contine to see him for the RTA, I feel it is imperative that I follow protocol and have a good rheumatolgist who can oversee all that Sjogren's will do to me.

The issue with my leg is most likely two fold. Part of it is the RTA as the acid in my blood began attacking my bones so some of that damage cannot be repaired. The other part is the Sjogren's where my white blood cells are attacking my moisture-producing glands; without moisture between your joints you will have pain, swelling and inflamation. So right now we don't know which one, or if both, are what is causing the pain in my leg. My leg hurts all the time, some days its barely noticable and other days it is horrible. And some days, like today, it starts out hurting some, then it doesn't hurt much at all, and then it hurts so bad I could cry. I don't know if I will ever get an answer or total relief from this. I hope that I will. I plan to talk to my doctor about at my next appointment, follow that up when I see a rheumatologist and one day I would like to see an acupuncturist who may be able to take away all the pain.

I have realized that there are so very many things that have been wrong with me health-wise that I've been suffering through and only now realize are because of Sjogren's. It's an exhausting list of ailements.

By the way, the reason that Sjogren's is more prevalant in my posts is because the medication I'm taking for the RTA has balanced out my levels; so as long as I continue to take the medication I shouldn't have any problems with this on a day-to-day basis (unless the damage done to my bones is irreversable). But with the Sjogren's thats not the case. There is a very real possibility that I will continue to develop other autoimmune disorders with this; rarely is Sjogren's the only one you have.

It's been a long, rough day and I am wiped out. For some reason my spell check isn't working and I'm just to damn tired to figure it out - so I apologize for the typos folks!

Peace Out.

1 comment:

  1. I feel ya, sweetie. This has been a ROUGH week. I am currently seeing Dr. Freeman at Rheumatology Associates. It's a group of women Rheumatologists. They are a blessing. I started out with a male Dr. from Pakistan.. The dude never made eye contact. You can imagine my joy. He didn't last very long. That, and he kept prescribing Steroids. Once you start treatment, avoid them at all costs. The weight gain and moodiness is amazing!
    See you later this week!