Monday, August 29, 2011


Hmm, let's see where have I left you all in latest adventures of Auto-Immune Girl. Oh wait you haven't heard of her, that's because I just gave myself the name;) It has a nice ring to it, doesn't it. I might need a costume to go along with my Super persona!

So before we went off to the land of Happy, I saw my GI. We went over the results of my iron infusions, next steps, how to deal with this good ole' body of mine. Here's the run down.

  1. Good news is the iron infusions worked! My ferrattin went from 4 to 32, whoa baby. So although it didn't help my energy, the blood work actually proved that it did it's job. No need to keep them going for now, we'll just keep an eye on things as we move along.
  2. Although the iron went in the right direction, my B12 kept on dropping. (Us colonless peeps don't absorb the B12 well) So I'm now going to be giving myself monthly B12 injections. The nurse walked me through the whole process at my appointment and I gave myself my first one with her watching. It was actually totally empowering and I won't lie, I was pretty proud of myself.
  3. I need to order this anti-nausea med she recommended. Thing is I have to get it from Canada, so it will take a bit to get here. But hopefully it will help.
  4. Since as she says, "I'm a difficult case." Our overall goal is to tread lightly with me and above all else keep me out of the hospital. I'm to go on a liquid diet anytime I feel my bowels getting out of control -- easier said than done.
  5. At my next appointment we'll discuss a scope of my pouch, fun!
  6. I told her of my major joint issues and she said me and the rheumy really need to come up with a plan to better manage.
Speaking of the rheumy and my joints. Both are really frustrating me. I have left 3 messages for him over the last two and a half weeks and nothing. The last time I called the nurse said he was behind on his messages. You think?! As I've mentioned before, he spends a really unusual amount of time with his patients, which is amazing, but makes him run late. Apparently that flows over into his messages.

But here's the problem, my arthritis/fibromyalgia is getting worse. And I'm trying to do what I can, which isn't very much. And more than anything I just want to talk it through with him. In addition to that, I'm having extreme dry mouth, dry eyes, dry lips (and it is not allergy related) I need him to call me back ASAP!

Super Auto-immune Girl is still on the trail, busy as ever, but trying to work her powers within the challenges her biggest opponent -- her body -- throws at her:)

1 comment:

Janice said...

Hi sweetie..did rheumy diagnose Sj√∂gren’s? I have dr calls it Sicca syndrome....I'm in a's different then the fibro..the pain and fatigue hurts more...feel better! xxo