I felt too good to be me today 🙂 Not at first…..but when the day’s Medrol kicked in. I went outside and started talking to people. I stayed outside in the sun for hours….and I feel no lupus effects! Usually I breeze by the folks out there and just wave. As people got to know me better today, I learned a lot about opinions of me. Most of the smokers thought I just did not want to socialize all this time. Most did not even know my voice has been broken for months. They thought I just did not want to talk to people.
It was the classic MG misunderstanding. They thought I was mad, sad and not social. I said I couldn’t smile until I took steroids. A couple of them piped up that they knew it was hard to smile when I didn’t feel good. I explained no….I physically could not smile. My mouth was not able to move that way unless I got IVIg or steroids. I wish I had snapshots of people’s faces when they realized what I was telling them! Their whole idea of me shifted.
The Relief Society president brought me food from the storehouse. Until today she had only heard my normal voice for the few seconds I held my eyelid up. She was shocked how different I looked, acted and sounded. I love people like her who are effusive. She was genuinely happy and intrigued….and not afraid to say so.
I have missed me A LOT!!! It’s good to have me back. It’s also hard not to dread when I can no longer take steroids. I don’t want to go back to that sucky existence! Hopefully no doc will ever take away my Plaquenil again. If that happens, I will quit trying to “get along” and will find someone who will prescribe it! It infuriates me that sometimes I let idiot docs walk all over me. Problem is, when I am beat down time after time, I lose my confidence to fight back. The local mega hospital sure had more than its share of idiots. The docs there are either super good, or NOT.
Yup…West Nile Virus royally screwed up my life. It brought a bunch of new disabilities and it intensified my old ones. It messed up my brain and it even fooled with my blood chemistry. I am glad many of the effects of WNV are in the rear view mirror! Some will probably be with me forever, but dang!…the worst had better be over!