Hi Maia,
U get it perfectly. Yes I have seen flat affect written about everyone in the hospital, it's just a lazy description. If my marketing background wasn't there maybe it wouldn't bug me so much, my articles could never get past my boss with the same phrase over and over. I don't know that they won't do more that solumedrol, can't tolerate predisone orally, but it seems like we will just do what we always do steroids. Which cause more trouble now even at low dosages. I spent last summer in the hospital after doing 40 daily. And the big burst just cause a crash. Plus I had a huge buffalo hump that came literally overnight and pressed on my spine which just meant more pain meds. I am surprised the drs at Mayo prescribe meds, does you father live near there. All I can get it seems from NIH are recommendations they cannot prescribe meds or I need to be in another program there to get an rx. Didn't know that before I went. It was an impressive facility with wonderful doctors and nurses for the most part but I don't live there and my fears were exactly the problems that we left with.
For example, I was concerned that they wouldn't have time to see this illness in action and feel like that was true. I can't take another 12 hour ambulance ride when I flare up or for them to see me each week and see the pattern. All they see is that I am angry and somewhat sick or that's how it feels and I am biased based on past experience most of us have heard the "are u really sick too much"
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That's what's so funny when I was in assisted living I had 10 nurses, 2 PT ask for my email/phone and same with the ambulance drivers just to keep in touch. How's that for a flat affect. When I am not sleep deprived or being told "I didn't read your chart so can you start from the beginning" which is 6 years ago, not sure how I am supposed to not be angry. I have had other psychiatrists who were to evaluate me say You must want to just ring someones neck at this point. And that if I weren't able to express my anger I could get depressed so they were happy that I could still do that. It isn't conducive to great relationships but I don't need friends who are drs I need help. Read my chart and talk to me as a human not just someone you need to check off your list and i will be respectful, ask me what you should already know and yes it makes me angry.
When I was described as lovely and pleasant for 3 years but ill they did even less.
Asking me to repeat the same story when they are healthy with perfect eyesight and I am the one to do the work is too much after the 4th or 5th dr does it. In assisted living they got to know things since I was there for more than an month. Even the CNA's asked if my face got really red malary before I got sick! My home nurse who see's me twice a week said my feet were so swollen when I got home, in Maryland they were regarded as a occasionally a little puffy. It's not their fault, but they don't know how I look or act normally so how could they evaluate things. All of my favorite drs at home started with being sure I didn't have lupus or explained away blood tests or wasn't swollen and over time became the big supporters and would argue with other drs who thought otherwise. I'm really tired of running around and my husband and I can't take much more of this. We don't have the energy, money or time. I don't want to move b/c the stress will prob be the last straw but we don't have a choice so now there's more of a burden with us moving in a few weeks. Any advice would be appreciated. I don't know what to make of the spinal fluid ANA or why after 6 years my blood ANA is negative. Unless the blood infection did something to hide it. Thanks for your help, Karen
