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01-16-2009, 05:49 AM
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Hey Erin
Its early days for me on the pred's but in my head i feel better i think my Dr is crap so i go in to see him and he says how are you doing yea i'm fine and what really gets me is that the tears just pour out OH no not again but my Dr was so good and understanding and caring many years ago i was in hospital for a long time their i met the most dignified lady who suffered so much but still had humor.................. had this great idea well i walk to the shop in the village thats 2 miles so i thought hey the next village is only 4+miles got a lift their walking back i'm thinking cross the fields it will be quicker ha ha i'm lost  oh and how muddy it is !!!!!!!!!!!!!!! i got close to a shocked fox who just looked at me then ran as i was talking to him having legs that still work makes it easier and i want a dog Alan 
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01-16-2009, 06:16 AM
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Hi Redtail
i've forgoten what being hot is like and in a years time i should be in Australia so i have reason to try and get more control of MG also the positive boost helps my daughter is geting married so it will be special. i have this special picture taken of the Queen standing next to a sow and they both look nice and a few years ago the pig farm were i use to work closed so the other staff left as slowly the pigs went but i had this one pig who had a injured leg so he stayed till the very end and i would bring him food which he liked and play with him . Alan 
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01-16-2009, 10:41 AM
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Yep,.......I bought some more pj's yesterday on ebay - 5 more to be exact - should have enough to last me now - cant make it through the night unless my home is really cold and I have not 1 but 2 fans blowing on me........Needless to say, my family is miserable, but I don't know what to do!!!! I even sleep with the windows open when it is 30 degrees just to get some relief!
You know I used to make fun of my poor aunt cuz' she was always hot, now I know what she was going through - poor thing!!!! I'm gonna my ask my doc what I can do to help.......I also get crazy, wicked nightmares on streoids - do you? I haven't reached my full on manic phase yet, I jsut keep praying that I don't get that whacko again!!!!! I have NEVER been a shopper, but when I was @ 80, I was buying stuff all the time - it was awful! MY poor hubby didn't know what to do................ Are you feeling better today? How is your mom? Auntie? ErinQuote:
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01-16-2009, 10:55 AM
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Hi Alan! I am glad to hear you are feeling better! THe pred can make people feel a little whacky @ times, but it does do it's job well.....I'm back @ 60 and am feeling it! I am really hoping to get back down to 20 very, very soon!
It feels sogood to be home! Last night I was able to take care of my fellas - got my hubby's clothes laid out for work, made dinner, took care of Dev, etc, and played with my dogs - it felt AMAZING!!!!! I always took being healthy for granted b/4 - NEVER again! I have learned to be so thankful for the days when I feel good, cuz' I never know how I'll feel the next day! Erinthe pred's but in my head i feel better i think my Dr is crap so i go in to see him and he says how are you doing yea i'm fine and what really gets me is that the tears just pour out OH no not again but my Dr was so good and understanding and caring many years ago i was in hospital for a long time their i met the most dignified lady who suffered so much but still had humor.................. had this great idea well i walk to the shop in the village thats 2 miles so i thought hey the next village is only 4+miles got a lift their walking back i'm thinking cross the fields it will be quicker ha ha i'm lost oh and how muddy it is !!!!!!!!!!!!!!! i got close to a shocked fox who just looked at me then ran as i was talking to him having legs that still work makes it easier and i want a dog Alan [/QUOTE]
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01-16-2009, 04:34 PM
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#15 | |||
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When I had Cushing's (which is high cortisol, same as taking a lot of pred), my husband would comment that sleeping next to me was the same as sleeping next to a blast furnace.
I went through a very cold winter in NY/NJ with just a shell (no liner), unzipped, no scarf, no hat, and hardly wore gloves. If I walked too much or too fast, I used to sweat and wet my hair. I had to stop wearing any hair products as I could completely wet my hair and then when it would dry, it would be in kinda spikes, and I would look like a warped hedge hog. But the doctor said I was fine. People would ask if I was cold in such a thin jacket, but I was just fine. Just fine.
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Cyclical Pituitary Cushing's, Addison's via bilateral adrenalectomy, Growth Hormone Deficent, Migraines, Trigeminal Neuralgia, Hashimoto's, Hypothyroid, Myasthenia Gravis? |
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01-16-2009, 10:20 PM
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This topic went all over the place!
From dog and pigs to temperature. But my two cents worth... Erin...it isn't the 'body weight' that they see - it's the fact that the prednisone puts so much of the weight in the face...and that's what they look at. I didn't see myself as I was when I was on high doses...it was only later looking back of one of the few pictures that was taken of me did the full effect show itself. Ignore them...you just can't cure stupid. Rumpled....will you come sleep with me? I'm freezing all the time! I'd love to be next to a furnace...who knew that I would miss that time.Sigh. Lydia |
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01-16-2009, 11:52 PM
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 True.....so true.....my face has ballooned to at least twice it's size in the last few days...........My little niece was shocked when she saw me today - but she was very sweet and told me I was "still beautiful"............. Steroids are a necessary evil.....can't live with them, can;t live without them, but my onc is worried about the fact that I've been on a such a high dose for so long now - almost a year............. I know 09 is going to be great! This is just another bump in the road!!!!!!! Quote:
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01-17-2009, 02:00 PM
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#18 | ||
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Hey everyone! Hope everyone is feeling good.
Erin: I thought it was funny that you said you find yourself always looking in a mirror now, when I'm the opposite. I've been avoiding mirrors for over a year now. I'm at 40mg every second day and still showing the heaviness in my face and belly (although not as much as when I was at 60mg daily). I agree with the necessary evil comment too - I love how I feel on steroids, but hate how I look. I know appearance shouldn't matter - but at the end of the day that's the sad world we live in. I too feel the heat! Before steriods I was ALWAYS cold - I was a running joke in my famiily because I would wear huge sweaters in summer. Now I'm constantly stripping off layers. And my big red tomato face shows the heat immediately. The other morning I walked to school (in -5 degree weather) and by the time I got there I had drips of sweat running down my back (yuck i know - sorry). Anyhoo, hope everyone is smiling today! ~Kathy PS I saw another of those MG posters today in Berwick-upon-Tweed a tiny seaside town in England (very near our house). I was SO excited. Quote:
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01-17-2009, 02:19 PM
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Yep, I've officially become "vain" I guess........terrible timing! It's just that my family/friends are so flippin shocked by my face size that it makes me really self conscious............I mean, in the grand scheme my face size really doesn't matter so long as I can eat, breathe, etc, and you would think that any reasonable person would just be happy being somewhat healthy - especially after everything I've been through since my diagnosis, but here I am anyway - crazy as hell!
I cannot take the heat at all! I swell up and start to sweat through anything/everything and the night sweats are starting to really tick me off.......again a small thing, but I'm building it up to some major ordeal......... I see people @ the Cancer Care Centers all the time -really really sick people who are handling life with such grace and dignity, I mean, they are dying and are calm and sweet and I whine about this................hate it! I think I'm gonna ask my doc to up my Paxil for a while............ Erin Quote:
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01-18-2009, 09:44 AM
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#20 | ||
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Oh Erin,
I feel for you and wish i could give you a big hug! I know it's hard to complain when there are so many worse things in the world than what we are going through, but that doesn't negate what we are experiencing. The thing I feel most guilty about is that I sometimes almost begrudge others healthiness. Why do I have all these problems that no-one has ever heard of when others are so healthy? Anyways, just know that you can complain here without feeling bad! AND you are beautiful! I took a sneaky look at some of your facebook pictures and you are stunning- even in the hospital. Once you get your strength back and the azathioprine kicks in you'll be off the 'roids and skinny again! Take care! ~Kathy Quote:
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