I spent the whole day Sunday resting up from the choking. As I sit here, different body parts feel better, others feel worse. It has been interesting to observe. It is painful to go from lots of solumedrol to none. Ouch. It was just too much fun to be hyper and in much less pain.
An exciting thing was signing onto Relative Finder. I jumped from 28 pages of relatives to 46. What’s cool is that all these people are related to just one grandparent. Imagine how many I will have when I complete my family tree!
My vision is back to being double and blurry. One eye is partially drooped. My brain is slower. I wanted to do more genealogy, but after about 2 minutes, my head was going to explode.
One of my support groups is planning a lunch for this month. A mall was suggested as a gathering place. I haven’t been to a suburban mall in Utah. I have only been to City Creek to go to the Apple store. I just don’t go to restaurants or malls. I don’t have money to spend. I looked up this one mall. I can get on TRAX and be there in 22 minutes! If I feel good, I should go off adventuring some time. I could zoom around the mall and look at people :-) I now have a new place to aim for one of these days.
I really, really want to go back to the family history library and to look at the flowers on Temple Square. Today was my stake conference in the Tabernacle. I haven’t been in there since I moved here. I went in when Heather was 4 :-) Another must-do is some Sunday I want to go to hear Music and the Spoken Word, live, in the Tabernacle. I am only blocks away. I need to do it before I get too sick again. I watch it on TV.
Just the hope of possibilities is energizing. I have been sooo sick and weak for way too long!
My laundry lady came to visit yesterday. No dysphonia, but my voice sounded rough. The more I talked, the better it got :-) I love being able to talk! Today she is coming to do my laundry. It’s more than I have ever given her before. Eeeek!
THE most annoying thing in the hospital and now that I am home is dizziness. IVIg and solumedrol improved everything but that. Today the dizziness is debilitating. That’s not fair! I am stronger, but I need my walker because I cannot focus my eyes right. Later today, I plan to go out in the community areas with just my walker. Nobody has seen me walk with it outside my apartment for about a year. I hope I don’t crash and burn. Now that I moved to this apartment, it’s a long way to the mailboxes.
I tried to talk to the hospital supervisor doc about my eyes when he came to see me in my room. He understood nystagmus, but when I said oscillopsia, he looked panicked. I doubt he knows what it is. I hope he looked it up :-) The supervisor doc was very self-important, not calm and kindly like the old guy hospitalist doc. Each time he lectured me about sticking with one neuro and getting preventative care before it became a crisis. I wanted to punch him in the nose! Nobody has ever tried harder to get appropriate MG care. Geeze! He didn’t want to hear it that insurance had denied my IVIg within the month. It was obviously MY fault.
I had fun today :-) I spent 3 whole hours out in the common area walking, talking, dancing and smiling. I made a lot of people do double takes. I went all the way down the hallway, walking briskly. How cool is that??? Everybody was stunned. Many thought I was “cured”. I had to explain in 3 or 4 weeks, I will be dragging. I am now imagining a crowd of senior citizens armed with pitchforks, storming my insurance company :-) People were royally pissed to find out I could have been like this all along, and they were especially flabbergasted to discover the insurance company has no interest in keeping me breathing and all that, even after the dramatic recovery. Welcome to the world of being poor in Utah.
Queasiness Alert and Warning!!!! Avert your eyes if you don’t want to hear this. When I peed this afternoon, a giant blood clot popped out of my vagina. I no longer have most of my female parts after getting the hysterectomy….no uterus to bleed from. I was scared and confused. Then when I sat down in my comfy chair, air kept coming out of my vagina. DANG! That means it’s the colon to vagina fistula. That was confirmed the next time I had to pee. It stung inside the vagina…..and still does 2 hours later. That means the colon to bladder fistula is also involved.
Suddenly I put it all together. The reason I have been blowing chunks of dried blood out of my sinuses and nose, then bleeding inside of me is because of all the heparin shots I got in the hospital. Anywhere little bits of blood were leaking out, even more blood came out thanks to the blood thinner. I wonder what my diverticulitis is doing? Now when I wipe, it’s pink. That means it’s still slowly bleeding. AAAAARRRRRGGGGGHHHHHHHHH!!!!!!!!! Not another problem! My internist can’t see me until next week. I am going to write an email to the nice old guy GYN and ask him what he thinks. Last time I was on high doses of solumedrol, I bled and was diagnosed with endometrial cancer. So, my problem is probably a combo of the solumedrol and heparin. Dang it!
More roller coaster riding.