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medcats10

ChattyCushie
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Everything posted by medcats10

  1. It is really important to trust your gut. Yes, Cushing's is rare, but it isn't as rare as doctors seem to think it is. If you feel something is wrong, stand your ground. It is important to find a doctor you can work with whether that is an Endocrinologist or a PCP or even someone else. But if you have to convince a doctor to test you that probably isn't the one you want to work with. If you think your doctor has potential try bringing them some articles and education them about Cushing's and testing. Hopefully they will be willing to help. If not ask people on here who live in your area
  2. 4 months post op Pit this past Saturday. I have lost 25 lbs and feel better than I have felt in quite awhile. Today was my first full day off hydro!!

    1. Show previous comments  4 more
    2. Azul

      Azul

      Congratulations! I'm glad you're doing well, and off the hydro too!

       

      Gisella

    3. trs

      trs

      That is awesome! Glad to hear you are doing so well.

    4. betseebee

      betseebee

      So glad to hear such great news! Can we expect to see photos soon?

  3. Thanks for all the hard work you have put into this site. It has had such an amazing impact on my life. You truly are an angel Mary! Love, Alicia ps...if I wanted to update my profile, how would I go about doing that?
  4. If I can't listen live, I will definitely be looking for the playback!! Alicia
  5. No wonder I was having such bad chest pains this week!!! Explains a lot! I never get a period, so all the chest pains were saving up! Thanks for the article Amanda. Alicia
  6. I don't know about you, but this guy sounds kind of arrogant and dismissive in his little "summary." Thinking that 24hr urines are too burdensome for patients, so just do a dex, get it over with, rule out Cushing's, and move on. I don't know, maybe I am just having an angry week and am projecting my own feelings into his "summary," but I found it incomplete, lacking compassion for the patient, and not up to date on current medical research! Alicia
  7. I knew a little girl that ended up with Pica (pretty much means you eat non-food things), because she had PWS and her parents kept everything locked up. Her favorites were books and puzzle pieces, anything paper or cardboard actually. I loved her, but she was a terror of a girl, non-verbal, would bite, head-butt, but could you imagine living life feeling like you were hungry all of the time?? And then add not being able to express yourself on top of that!! I used to give her huge bear hugs to help calm her down, when she got to be about 10, she was too big for me to fit my arms around anym
  8. I have worked with children affected by Prader-Willi Syndrome (PWS). It is actually one of the childhood disorders that has been genetically mapped. The deletion or translocation of the gene occurs on the proximal arm of chromosome 15, and occurs from the genetic material from the paternal chromosome (it is interesting that at this same location, deletions and translocations from the maternal chromosome result in another syndrome, which is very different, Angelman Syndrome). PWS is much more than just a disorder that affects weight (much like Cushings), the children who are affected can hav
  9. I got a beautiful surprise when I woke up this morning. Katelynn had left me a message last night that she had presents from me, and this morning she knocked on my door looking about to burst. She had a Christmas card that she had "adapted" into a "good-luck-on-your-surgery-card," and she had made me a bracelet, and she gave me one of her favorite stuffed dogs. She promised to be my nurse and take care of me after my surgery. I was so proud of her, and just gave her a huge bear hug. Then tonight I went to church for our monthly women's meeting. We were having a "white elephant" exchange.
  10. I play poker almost every weeknight. Texas Hold'em. I really enjoy playing, and am pretty good if I do say so myself. I like going there because for a few hours I feel half-way normal, I get to flirt and joke, and be young. Lately though I have been very exhausted and my muscles have been very sore, so I have been using my wheelchair a lot. People then look at me a lot different. You know I don't want people's pity, and when I am using the chair, for some reason I become even more stubbornly independent. I don't want people to help me, and would rather struggle to do something than take
  11. No, that will be great, I already have it on the calendar!! I don't think my disability appointment should take me 2 1/2 hours...right??? Alicia
  12. Sounds good, it will be right after my disability medical screening, I should have lots to talk about! Alicia PS I get all confused with time differences, can you figure out what time it will be Arizona time?
  13. I can't believe the insomnia lately. Usually I don't have a subjective sense of tiredness, so it doesn't really bother me. I can stay up and find some random thing to do, laundry, dishes, online poker, or just stare at the ceiling pondering the meaning of life. But after 14 days of only 2-4 hours of sleep a day, even if you don't feel tired, you start to feel tired, ya know what I mean? And right now I am dealing with teenage dogs, and they are driving me just about crazy!! I have a 2 year old black lab/pitbull mix. Everyone tells me what a beautiful dog she is, she has the most gor
  14. Mary, Just give me a day and time, and I will be there with bells on! alicia
  15. I don't know if you want repeaters. But my life has changed significantly since my last interview, and I could talk about losing my job and applying for Social Security at such a young age. And the issues about self-esteem tied to career, and risk of depression and isolation. Let me know. Alicia
  16. Thanks guys, it was a really hard subject for me to talk about, but I really enjoyed doing the radio show, and if it helps someone else towards getting a diagnosis then it was worth it!
  17. I'm willing to be interviewed, but I live in AZ and at 6:30 eastern, I am still at work. If I had enough notice I could possibly make it home by 7:30 eastern. I will turnmy computer on at work Robin at try and listen today if I don't have any patients. Good luck!!!!
  18. Sorry then, I'll still be at work. I usually don't leave there until 6:00 mountain time.
  19. I don't even have a diagnosis yet, is it ok for me to call in? I have been dealing with this for 8 years, and am finally going to see Dr. F in one week. I feel like I am standing on a precipice, and I am not sure if I will make the summit or fall to my death! And 6:30 in what time zone?
  20. So I was sitting around last night messing around on the internet and just doing random research like I do most nights. I came across this article about c-reactive protein. I was interested in it because I have elevated c-reactive protein, and that has thrown the doctors off because they think that that means I have some underlying autoimmune thing going on. Well this article is really interesting. They actually looked at the molecular shape of c-reactive protein in six disease states, Cushing's being one of them, and found that c-reactive protein actually changes "shape" (and if you know
  21. They also have Gamma Knife Radiation at Barrow Neurological Institute in Phoenix, AZ, where I am hoping to go if I need surgery. Barrow Neurological Institute
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