Today is Wednesday. Got my port on Monday. Not sure how I feel about it yet. Still sore, and it's not pretty. But healthy doesn't always = pretty. Hopefully I'll at least be healthy soon.
I don't want this blog as a means of communication, just a way of putting my feelings down on paper. Sort of organizing my thoughts.
I have Mucous Membrane Pemphigoid. It's an autoimmune disease. It involves the mucous membranes in my mouth and throat and nose. My eyes (fortunately) have not been affected. I get blisters (sort of like water blisters) on my gums. My skin is fighting itself and trying to get rid of it. I've been on every medicine known to possibly get the disease to respond, and mine hasn't. I lost most of my hair on one of them even. It's growing back, and the medicine didn't help my symptoms. So now I'm getting IVIG infusions. After 6 months if this doesn't work I'll get rituximab infusions.
Here's where I am.... God uses all of our situations for refining us, for shaping us into what He needs us to be. To weaken our ties to the things of this world and show us that the REAL world is not this one. I firmly believe that. He knows I am stubborn and independent. I need to be more dependent on Him. I know that. Now I need to DO it. I'm trying. He meets me where I am, and will help me get to where I need to be.
