Monday, May 31, 2010

Upped again...

Well, I'm still waiting to see if methotrexate is my wonder drug and so far it isn't looking like it. My doc upped me again and I'm almost at my max dose. Not sure what would be next considering I started on Plaquenil to begin with. I'm not sure what else is used for lupus so I will be doing some more research.

Our insurance will be switching come September and we will be seeing all new doctors, again. Seems like we go through this every few years. We finally found doctors we like and we'd love to stay with but the monthly premium would kill us if we stay. If I were working, we might be able to do it but that isn't possible right now. I'm really going to miss J's rheumy more then anything. Dr. B has been wonderful and she's done so much for us.

If you've never read The Spoon Theory, you should. Several times over the last week I've heard "But you look great!" And every time someone said it I thought "if you only knew..." A few weeks ago I was covered in a rash. My face and chest were red, bumpy and itchy. Then it was dry and scaly. The seizures started again and I was in a full blown flare. For weeks I was blotchy. My meds were upped, THANK GOD for prednisone! Yes, I just said that, I have a love/hate relationship with the stuff and within a few days I did start to feel better. I'm trying to lower my dose again and it's been rough. This past week has been hard on me but it was totally worth it. You'll see why very soon :) So, I've been adjusting my dose and we'll see how I do. Tomorrow I plan on doing as little as possible and letting my body rest. Everything hurts today.

Anyway, my point is, yes I have one, the reason I look "great" and not sick is because of my meds. I take 20 different medications right now. 20!! It's a lot. I can't even tell you how many pills I take a day because *I* don't want to know. I am sooooo thankful for each one. Without them I would look sick or I may not be here at all.

1 comment:

Tazzy said...

I have only just now found your blog. I feel for you lupie sister, I do. I am on so many meds it would make a well person dizzy trying to remember them all.

I feel for your daughter more than us. She is just a child. So unfair these little buggers have to learn to be strong when so young. I pray she has the time of her life when she feels well.

Hugs to you all.