I am fortunate that I was able to run on adrenaline part of the time during the visit. I never felt well, but I at least sat around in the middle of the fray 🙂 One thing I sure noticed is that small children have remarkably heavy feet and pointy bones. They were painful to me. I have spots all over me that are wicked bad sore and tender. Those points are never more obvious than when exposed to small children. Seems like I was always saying Ouch! or Ow!
The 5 year old is now aware enough and compassionate enough to ask about obvious things wrong with me. It got embarrassing. I know I am a wreck…..but it really hit me how bizarre my explanations must sound to a kid. The longer they were here, the more questions flew.
I didn’t eat much while Heather and the kids were here. A pity I could not force myself to be hungry! Heather offered to take me out to eat a few times, but just the thought of food was gross. I am guilty of not taking very good care of myself while they were here. I missed a few doses of probiotics, Miralax and my insulin. Before they even got here, I was bleeding more than usual from my colon to vagina fistula. Now feces are coming through, too. That’s just gross 😦 Docs keep saying I am too fragile to operate on. Most people with these problems would get a surgical repair. I can’t.
Between missing some Miralax doses and lifting small children, I put a strain on the intestinal fistulas. Usually I am fairly careful to avoid weight lifting and straining to use the toilet. Frankly, it sucks to have to think about that stuff daily. I now remember why I have to. Sooooooooooo much pain!
And now that I am home alone and “relaxing”, my eyes aren’t working very well. Still having problems with my left eye and pain.
There’s that old saying that it takes more muscles to frown than to smile. With MG, it’s not really a frown, it’s a droop. My mouth area hurts, my arms are weak and I have a headache from trying to smile, hold my head up and take a pic. EVERYTHING is such an effort! The good news is that I am losing the stupid moon face from steroids.
Can you tell I am mad about MG today? It would be nice to act like a normal human being. It’s ridiculous when helping grandsons use glue and place popsicle sticks makes me short of breath and shaky. It’s crummy that brushing my hair is such an effort. Today I have to write up an MG timeline for my lawyer. Just thinking about the fact that I have to have a trial in order to maybe get IVIg is aggravating beyond all measure. I feel yucky 😦
It’s hard not to feel blue right now. I wish I had been more fun with visitors here and now I miss them very, very much. Heather drove all the way back to Portland in one trip 😮 It was something like a 14 hour drive. Now when she moves to Texas, it will be too far to drive here. I am very bummed that all the subsidized senior apartments I can find online around Austin, have an 18 to 24 month waiting list 😦
It’s less than 800 miles from SLC to Portland, OR and it’s about 1300 miles from SLC to Austin, TX. Too bad it’s about 2000 miles from Austin to Vermont. I still wish I could live in Vermont during the summers and Texas in the winters 🙂
Ugh! I need another nap. I have been having very intense nightsweats for a couple of weeks. Last night was the worst so far. Oh……and how did I manage to NOT mention the trochanteric bursitis? It has been at least 3 weeks now of INTENSE pain, every night…..all night. Between the nightsweats and the hip/back pain, it has been a long time since I had a decent night’s sleep. I think I am going to give in and agree to the cortisone shot. I cannot take much more. Yikes! Once I looked at the pic, I am ready to chicken out again.