Really, Really Bad Week

Sorry Dawn I didn’t call you but the neuro I saw admitted me immediately. I thought I had a good neuro but boy was I wrong. He knew what CIDP was and he asked why I had no treatment yet and admitted me and had one bag of IVIG started and then that night he told me of this new info about one bag run once a week for like 4 weeks or domething cant quite remember everything right now I am so mad. When he called me about that that evening I told him no I wanted a five day loading dose and then another with in 30 days because this has gone on so long and he agreed but the next morning everything changed and he wanted another MRI which they just did in MAY and then he also wanted a LP. They actually have problems getting a lumbar on me but he said not to worry he would sedate me enough and he was really good at them. He told me what he would give me to sedate and I said it would not work but he thought it would but when he tried it did not work and he threw a tantrum and stood up and said he will write discharge papers for me. My husband talked him into waiting until my regular doc saw me and see what he could work out. Again and LP was tried by the anesthesia department but they could not get into the spinal cavity so again no luck but they have managed to give me a UTI and a major problem with my back since all this and now I am in subacute until they get me back off the Dilaudid by IV. Another 5 days probably oh yeah and by the way that little tantrum the neuro threw was the last any of us heard from him including my regular doc and my physiatrist. He dropped me while in the hospital and never came back needless to say now that he started a diagnostic all over again I cannot get the treatment to continue and nobody here knows what to do. I finally since last wednesday got a computer to use in here and have done nothing but cry and yell at some staff since this all went bad. I dont like staff with bad attitudes so when they come in my room with a lousy attitude I make sure they know that I dont like it and I get a new nurse or CNA or whatever I need at that time. I am at a loss and my regular doc thinks that we should go out of state to get this treatment going but we cannot afford this at all I still am waiting to hear about my SSDI I called my worker and she said they were just waiting for their phsychologists report and they had already sent a reminder and it was unusual for her not to have gotten it in yet but they already had the medical doctor’s report. I have to do what they want in this amount of time but they can just wait as long as they like on someone else. Something is wrong with this picture. Their medical doctor said he was putting me down as completely and fully disabled and i shouldn’t worry but this is taking too long and now I am mad. Nothing has gone right and after this last eight plus months I dont know how much more I can take. No neuro now and no treatment now and no power chair yet and no disability yet. Way too much stress and no way to deal right now. I really forgot how much I hate hospitals and medical “stuff” so much that I just want to go home. Our ministers wife is here also her leukemia is back and she is here in the same hospital and I can look out my window and see the other hospital 2 blocks over where my husband’s uncle was admitted yesterday for pancreatitis. He is really ill and on morphine right now. Wow what a wonderful holiday all the way around. Anyway if anyone has any suggestions on where I should go (as long as it is NOT Mayo) or what I should do now I would appreciate it because i am at a loss. Thanks to you all in advance.
Jody:confused: 😡 🙁