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Old 08-04-2008, 10:40 AM
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erinhermes erinhermes is offline
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Join Date: Jul 2008
Location: San Antonio
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15 yr Member
erinhermes erinhermes is offline
Senior Member
erinhermes's Avatar
 
Join Date: Jul 2008
Location: San Antonio
Posts: 1,471
15 yr Member
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Wow! I was blown away when I read your message. You've had a really rough time, haven't you? When did you first get sick? Do you have family to help you? I mean in terms of the surgeries alone, I don't know how you did it - you must be very brave, cuz' I flipped out over my ONE little surgery - I'm not kidding, for me it was very traumatic.....I was scared out of my mind. How many pills do you have to take daily? I take about 20 and that's just for my MG and other health problems, and they are nothing compared to yours. Do you have a good neuro/GP? I really hope so. I fuss about mine, but he has taken really good care of me and ALWAYS calls me back in 5 min or less - I even awoke from surgery to find him holding my hand (after my thymectomy).....Have you had a thymectomy? I had one April 22, but my hematologist told me he thinks I'm "chronic" - very depressing - especially since the surgery was so painful - transsternal - they found spots on my lungs and wanted to do a biopsy. It's so depressing when I can't get off the sofa or do anything. My son just has a really hard time with it b/c before I took care of all the "mom" stuff and was a mom with great work hours - no longer. I feel like I'm letting them (my husband and son) down and failing them when I can't care for them. They are my world. I used to watch my neice every day, now I only see her weekly and that's been hard on her too (she's only 6). Do you have someone there during the day? I just don't see how you manage - especially if you choke a lot. How old are you? I'm 34, but feel about 90.......Please let me know how you are doing when you get a chance. You can contact me 24/7. I'll keep you in my prayers.



Quote:
Originally Posted by rumpled View Post
Don't worry about not knowing about what panhypopituitary means - heck, most doctors do not either. Pan = most or all, hypo = low and pituitary (but most consider it to be just to cause dwarfism, not other issues, sadly) so it basically means that overall pituitary function is low and since the pituitary is the master gland, well, things tend to not work so well.
I don't have a thyroid, adrenals, ovaries and part of my pituitary was removed - all surgeries as they had tumors, cysts or were diseased. But really I am I am fine... but the result is that I have to to take all replacement hormones and try to mimic what a body does normally so when I am sick or stressed, trying to guess what I need without causing further damage is just... and also there is just no really replacing what the body does naturally even though I take as many bio-equivalents as possible. But somehow I feel my whole day is ruled by taking medication.
It is lonely but... you can find ways to manage. Not being able to use your your muscles effectively makes staying at home feel bad. I have to get help cleaning even though I am here. I cannot do things I used to do like decorating and simple cleaning and even microwaving, I use a stool to sit on to wait and sometimes need a stool to stand on to as I cannot raise my arms high enough when I am standing on the floor.
I guess since this has been my case for a long time... I have started to adjust. I just go back to bed when I am tired. I don't fight it anymore. If I want to do something, I give up on bathing! I have a shower chair which helps as well as a bar so I don't fall out of the bath. I tend to choke a lot though - it seems my MG is high up.
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"Thanks for this!" says:
rumpled (08-05-2008)