Few people who are doctors….especially young ones, have personally experienced chronic or acute illnesses. I have been mulling over what the neuro said to me. She kept asking what I hoped would be the outcome of my ER visit. I said I wanted to feel better. She said…but were you hoping for an MRI or CT scan, or what? I thought that was a very strange question! I was not hoping for any sort of medical torture. Really…I just wanted the numbness, weakness and swallowing problems to go away. And again she said did I want medicines or what? How do I know what I need/want? I REALLY don’t want anything but the symptoms to go poof and be gone.
While going over and over this in my feeble brain, I realized she thinks the machines and the pharmaceuticals are what I was there for. Ummmmm….no…..unless you are offering IVIg :-) But I did not go to the hospital to be treated for MG, I went there to see if I could feel better and find out what was wrong. I had not thought much deeper than that.
Why would anyone want a test, unless there was hope that the knowledge would improve things? We were looking at the world through very different lenses. Part of that is probably because she realizes that what she knows and can make better is infinitesimal compared to the pain in the world. More often, I think it’s an ego thing….as in, if a doc doesn’t know what to do, it’s my fault that I don’t feel well.
The neuro says she spent an hour talking to me the first time. I can neither agree or refute. Time was going at a different speed for me because I felt so out of it. When she came back the second time as a much less friendly person, she complained that she had spent all that time with me when there were so many patients on the floor upstairs. She had feet, she could have stopped talking. She was the one asking the bazillion questions. I think it’s bad form to care about a patient, have a change of heart and be hostile about it. Suddenly it was my fault for using hospital resources when all she thought I really needed was a good shrink. She wasn’t going to be a hero, so treating the other patients with clearer treatment paths was more satisfying.
She also pointed out that sometimes my voice worked better than others. No shit, Sherlock! The more fatigued or sick I am, the less my voice works. It improves somewhat after rest. If I have a wave of pain, dizziness or weakness, it gets instantly worse. Sometimes in the midst of totally broken speech, clear words happen. Does she think I should stay the same? MG doesn’t work that way. When I left home for the hospital, my voice still worked perfectly. Until I open my mouth, I never know what my voice is going to sound like. People here in my apartment building are very much used to it. Countless times I have started conversations with a working voice that then switched to broken and vice versa. Other times it stays solidly broken or solidly working.
I have to remind myself a million times over that myasthenia gravis is a rare disease. Most neuros never have an MG patient. I know more than most neuros because I live it. I also am active on support groups and do my fair share of studying. Any person with MG is crazy if they do not know a great deal about their condition. Otherwise, docs just love to prescribe meds on the caution or don’t give list. It happens daily on support groups, that people are suddenly weak or can’t breathe well because of a doctor.
There are very few blogs…at least that I have found….written by low income people like me. There are some by people who think they are poor, and they are, compared to the median US income…but not compared to me. Telling me I can save money by using coupons is not helpful. I usually buy basic things like eggs, meats, fruits and vegetables…..not the canned and boxed things that are cheaper with coupons. Then there are the blogs where people cook and stretch meals with carbs, carbs and more carbs. Not helpful for me. If I am going to eat carbs…they had better be darn good carbs! I do like reading Poor As Folk. I cannot always relate, but we share many of the same feelings about not having money. I liked her Thanksgiving wrap up post.
In my case, that much ($49.04) SNAP money is supposed to buy 50.5 meals…..more than half of my month’s food. Sigh….it’s tough being a very low income single. Buying most any hunk of meat is an investment for a month. I miss being able to eat decent food. I miss shopping at Aldi’s. They are the same company as Trader Joe’s…but cheaper. A few places have Costco, Aldi and TJ’s. Oooooohhh…a Wegmans would be good, too! Perfection! But then I would really, really wish I had more to spend :-)
I grew up with Wegman’s. Whenever I would visit the Syracuse area as an adult, the stores got better and better. Going to one is like being in a city and going to different specialty stores. Oooooh! I just found this article. Looks like other people think like me. In my opinion, the only reason Publix is near the top is because so many other southern grocery stores suck. Publix is expensive. Their headquarters were in Lakeland, Florida, where I used to live. Every time I drove by, I was awed. I mostly shopped at Sam’s Club because it was close to my place…..mmmmmmmm, those rotisserie chickens :-) The rest of my food came from Mexican stores with good, cheap produce.
I need to shop again. It’s cold out there! I ran out of eggs. I like the jumbo ones at Trader Joe’s. I still have a whopping $14 in food stamps to spend. I am still hungry for turkey :-) Do you call that a one track mind?
As I hand washed under garments and a nightgown for what seems like the bazillionth time, I was a bit horrified to think that my clothes have only been washed at the laundromat once since Heather was here in September. Good thing I mostly only wear underwear and nightgowns….they are the easiest things to wash by hand. I just haven’t had enough strength to go to the laundromat. My guts keep voting against it, too.
Of course, half of my body is still numb and extra weak. I just keep trying to cheer myself up by repeating “it’s all in my head”. That ought to fix me, right?