A Long Overdue Update

It's been a while since I given you guys a full update on life back in NYC after my total hip replacement, and my continual issues with Lupus. Well I can tell you.. it has had it's great moments and it's bad moments. So here's what's been up....

Since coming from Florida, I was initially feeling great and had plans to join a Pilates class to continue my therapy workout. Unfortunately, I haven't signed up for Pilates, as small and gradual flare-ups reappeared in my knees. It's been frustrating because despite the slight exercises I might try to do, it does little to alleviate any pain or swelling. I've slacked off a bit with the cold packs. Not that it's an excuse, but it was only giving a very temporary relief. As one leg (my left & operated leg) got better, my right knee decided to swell right up to the size of a small melon. So it's been trying to get that better. Though at the present moment it's not as bad as it was at first... it's still not healed all the way.

I went for a new complete re-evaluation of my case at the Hospital for Special Surgery, which happens to have a Lupus center of their own. Seeing this new rheumatologist was just what I needed. He made me feel hopeful and redetermined to figure this situation out. He had questions but an outlook that we were going to get answers! What a great feeling. I was beginning to feel despaired, worried that I was going to forever be the giant medical question no doctor could figure out!
Well sure enough, going to find out my results, we found that I was too anemic for comfort, that I was extremely Vitamin D deficient... (maybe I should head back down South??), and a few other things that had already been established. Still 5 years in the working, Lupus has not shown in name in my blood work. But it is still within all my symptoms. It is still in the pain I am in the majority of the time.
However, it does not control my life! I am as active as I could possibly be. I am back to work full-time, and I have all my friends & family there for all the support a girl could ask for.

My doctor and I are set and agreed that the new plan is to start over. I'm back on Plaquenil 200mg at bedtime. Naproxen for pain, Predisone to bring down all my inflammation. We will also be adding a large dose of Vitamin D once a week, Iron 3x a day if I can handle that many. Depending on how I feel in 3 weeks, we will then start to look at other medications. Including the brand new on the market...

Benlysta®. It's given thru intravenously, which of course isn't much fun, but please click and read the following link for additional break-thru news on this medicine. lupus.webmd.com/news/20110309/new-lupus-treatment-benlysta-faq.

At this point in my life, I am back to trial & error, with re-newed hope that I can find something that will kick in and send me into some form of remission. I sometimes feel like I've reached my limit, but then God gives me a day when I feel great and I know I can continue. The best  news I received today was that with a little help from the methods they have in place, starting a family will be the one normal part of life they can definitely give me. Granted with all the underlining conditions, they still have ways to help women like me have successful pregnancies, and well there wasn't anything in my results that would completely prevent me from trying! So I am once again ready to do what God put me here to do....survive medical impossibilities!

Thanks for keeping up with my journey. I'll be back soon!