I am not sure how to feel today. I am grateful I did not have a stroke! I am also annoyed that I am still numb and weak. I am at a loss for what to do and where to go from here. Mostly I am thankful that there is a whole big world out there. There are possibilities. I need to explore those possibilities…..like how the heck to go somewhere else 🙂
I keep going over and over in my head about how my medical life has unfolded. When I was younger, I knew nothing about illnesses. I naively did whatever docs said. When things happened to me, I had no clue they were significant. I went along believing that each incidence of illness was unrelated to the others. I did wonder how come more happened to me than other people. It was such a drag to have bronchitis, strep throat and tonsillitis every few weeks all through high school. It seemed like I was always coughing. Lung problems have been a constant theme in my life. I have been on oxygen a couple of decades now.
I have had double vision since I was a child. I have had intestinal problems since my 20’s. I used to be hospitalized a lot with high fevers and mystery infections. I try to examine my past through the eyes of the neuros who now say I have conversion disorder. I don’t see it that way….obviously. All these years I have been diagnosed with one autoimmune disease after another….by multiple doctors in multiple locations. Were they all fooled? Were they all wrong? Hard to get the West Nile Virus diagnosis wrong.
Thank goodness for support groups! Through hearing other people’s stories, I know that my struggles are far from unique. Many women are told their MG symptoms are all in their head. Many are labeled with conversion disorder. They then go on to find better neuros! I am glad that an eye doc diagnosed me, then a neuro confirmed MG….and that many others reconfirmed the diagnosis. It gives me the strength to make it through times like this. I still have insecurities and doubts…but I have the past to inform the future.
I always go back to the story of when I had horrible diarrhea interspersed with spiking fevers. My doc did not know what was wrong. He offered no help. Finally I sat on his steps and refused to move until he did something. He had me sit on the toilet in his office to prove that blood was, indeed just pouring out of me. He called an ambulance and I was sent to Dartmouth-Hitchcock Hospital. They gave me narcotics and my guts stopped misbehaving. They did tests. I don’t know what kind. After a few days they decided nothing physical was wrong with me and it must be mental. They sent in the shrinks. I was discharged from the hospital 11 days later and still felt awful. I went to a country doc who charged $15 a visit. He poked my abdomen and said I needed my appendix out. When the surgeon opened me up, he found an appendix that had been burst for awhile. I had peritonitis. The big deal hospital had missed it. They almost killed me. Since then, if I don’t feel like docs get it right, I don’t trust them. It has served me well….but it has also taken a psychic toll. Docs hate uppity patients, and they really hate patients familiar with their diagnosis. Someone always has to add a snarky comment about how I know too much. Well….yup….so I don’t end up like the MG patient in cardiac arrest. Duh!!!!!
Yesterday I never ate until late last night. What prompted me to make the decision to go to the ER was my swallowing. Because I was numb only on my left side, when I swallowed coconut juice with coconut pieces, the coconut pieces got stuck on my left side. It felt awful. I tried to chase it with plain water, but that just made me choke.
I felt too icky to eat until after I had been home a few hours. I had a can of vegetable soup with canned chicken added. I did OK swallowing, but my throat was still sore from the morning choking.
As I write this, it’s 12:30 PM. I have not eaten yet, but I did drink some coconut juice with no problem 🙂 What I really want is a turkey dinner. Sooooo hungry for turkey! Must be the power of TV commercials and memories of Thanksgivings past. I wish I had a Trader Joe’s turkey pot pie or a grocery store TV dinner right about now. I don’t feel like cooking those pearl onions or making my 2 potatoes into mashed. I am not exactly super woman today :-p
All that hype about how awful the weather was going to be yesterday….and it mostly missed us. The high was 56. We only got snow overnight and it only stuck to leaves on the ground or parts of cars. It was just enough to tell it was snow and not frost….fractions of an inch. It would have been much more productive to wait in line for a free turkey than to go to the ER. They gave out 3000 turkeys. Mmmmmm…..
At 1 PM, I stuck my head out in the hallway to see if the chili dinner was happening. The community room door was locked and a few people were milling around outside. Did the RA lock them out? Some woman who is new here decided she was going to bring down chili and feed people. The manager assured the hungry during the STUPID meeting, that this place was a ghost town for Thanksgiving. If last night and all the cars in the parlking lot are any indication, most of us are here. I decided to just eat vegetable soup with a small can of turkey in it 
Wendy The Wanderer 
ER doctors, and sometimes others, will diagnose “mental” issues or other things they don’t have to treat in order to avoid hard work in diagnosis or to avoid putting valuable time into patients who only have Medicaid, which may pay less. That’s worse for the uninsured. Mental and emotional disorders can only be diagnosed by trained professionals. If your mental-health professional says you don’t have conversion disorder, you don’t. You have a stingy government.
Both the psychiatrist and mental health counselor have been some of my greatest allies….along with the lawyers, my GP and the internist….and while I am at it…most of my other sorts of docs. This is like playing a game. It’s confusing why the neuros at the U are so…..well…..weird. I have been reading a lot more about conversion disorder, and specifically if it can be cured. A differential diagnosis for it is MG, and I have already been diagnosed with that. I think the neuros are crazier than I am. They keep pulling this on women in Utah with MG. Their opinion of what’s going on with me is a moving target…..depending on what they can get to stick :-p
Your health care baffles me. Perhaps I should say your lack of care. I live in Tennessee and you would get no better here. This is a Republican state run by the rich over in Nashville. I hope you figure a way out of Utah before they kill you. If you find a great place to move to be sure to share, it’s tough for me here and I have no near the health problems that you do. I keep you in my prayers and hope you find the health care you so desperately need. Deb
As you know, Utah baffles me, too! I was just thinking….what if I had never left Vermont? I would still have the same MDA doc. My diagnosis never would have been questioned, I would be getting IVIg….and I would have no idea this could happen to people. I do not regret moving around, but it sure is an eye-opener. I naively thought that if the eye doc and my 2 VT neuros all said I had MG, that would be the end of it. Who knew that crossing state lines changed everything? I do, now! I am still searching for that elusive “best” place. Thanks for caring about me 🙂 Time to start one of those Camphill Village farms for physically disabled people to live at and be homesteaders together. We need to create our own heaven on earth.
Can’t believe that you had appendicitis and they did nothing! That must have been the start of your abdominal troubles even before the hysterectomy. Some doctors hate it when you know more than they do about your medical problems I say “Get over it” and start learning! My problem is that I don’t actually say but I am quiet and then I change doctors.
I read an article about restaurant making up turkey dinners for those who don’t have any in some town. Do any of the fancy restaurants do that in SLC? It is a shame that you didn’t get any. We had a frozen pizza and a cherry pie. We also have mashed potatoes and macaroni and cheese but I have been eating those two since the UPPP and was sick of them. You could have done so much with a free turkey!
TV news is full of restaurants sending out free meals. They showed a Denny’s that did that. But how the heck to people find out ahead of time and know who to call??? The news is always about it after it has happened. You would think organizations would put up flyers in low income senior apartments. There is no outreach to places like this. New residents only find out about the food bank boxes when they see others getting them. I am still hungry for turkey!
That is so stupid that they don’t tell ahead of time. Sorry about your not having turkey!
It’s not TV news until it has happened. I just wonder where events are publicized??? Wouldn’t it be nice if organizations sent flyers to be put up in public housing? Maybe they are afraid if people knew what was available, they would be swamped? A bunch of the little old ladies here never ever leave their apartments. Who cares about us old, sick, poor people? None of it is fair. It sure would be better if we all got enough money to meet our basic needs. This way now, only people in-the-know who are able enough to go out and about get the goodies. Sigh…..