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Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS. |
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01-25-2010, 01:32 PM | #21 | |||
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Thanks Pat for the good thoughts.
I don't like being depressed...I am having a hard time with motivation to do anything. And about antibiotics...I do everything possible to avoid them. I often am allergic to antibiotics and have a list that I can't use. So scary to have an allergic reaction, but of course I will go to the doctor if necessary. Herbal teas and relaxation seem to be making this one better, but it is not gone yet. I think I figured out why I am so depressed. I am a person who sets goals in my life and MG just made a mess of all my goals in life. I am a person now without any direction, I don't know where I am going and I don't know how to get anywhere at the moment with a goal...so I feel lost without something to work towards. I think of all the things I want to do and know I could do some of them...but I have to solve this financial mess that MG has put me in first. So, I suppose, that is my first goal even though I can't figure out how to make it better.
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01-25-2010, 02:17 PM | #22 | |||
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before I became ill, I knew exactly where I was heading. I was considered a very bright and promising young physician. everyone (including myself) knew that I was going to be the head of the dept. sooner or later. within 2 years of being an attending physician, I was promoted as the head of a small unit... even after my first hospitalization, in the ICU, I knew for sure that I was going to recover in no time and go back to everything just like before. hadn't I been able to cure patients who were much more seriously illl? only after my ( probably fifth or more hospitalization) did I start to understand that all this had to be changed, as obviously, someone who can't even pick up a patient's chart and walk a few meters without assistance can't attain such goals. and this was very hard... (to say the least). a good friend of mine, said to me-look, before becoming ill, you life was unidemensional. you were walking straight on one line, from A to B. now, your life has become 3 or even 4 dimensional (if you take into account how it changes the way you see time), and you should just find the way to walk in those convoluted paths, that may eventually be very rewarding. so, I gradually had to set new goals, that had to be realistic and changing. sometimes it would be just finding the way to be able to get out of bed and walk to the other room, without collapsing. other times, to present my work in an international conference, despite having to use all this "equipment". I started writing plans for each week- one, assuming that I am going to be relatively well, and another assuming that I am going to be pretty much bed-ridden. so I was pretty much prepared for both options. and I also "allowed" myself times of fear and despair, and times when I just want to be left alone. and times of mourning my "old self", and incorporated everything together. and I gradually found a network of people (friends, colleagues, family, and physicians) who could be there when I really need them. making sure that I never burden the same person too much. and also developed my own philosophical approach to it all. and found in myself new skills that I never thought I had before. this took a very long time, and I think I am still in the process of doing it better. probably, it is never going to end... alice |
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"Thanks for this!" says: | DesertFlower (01-25-2010) |
01-25-2010, 07:33 PM | #23 | ||
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I applied for disability even before I had a diagnosis and I applied online. I wrote in detail how many feet I could walk and then get short of breath and how I could not lift my arms only so much without tiring and how even talking made me short of breath. I got my first check exactly 5 months after applying. It certainly is worth a try and then if you get turned down, get a lawyer. However, if you have a diagnosis of MG you will more than likely get approved. Also, fully explain that your symptoms wax and wane and you never know how you are going to be. Good Luck |
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"Thanks for this!" says: | DesertFlower (01-25-2010) |
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