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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 if there are any doctors near you they would recommend, or check out the helpful doctors page. A lot of us end up at DR. F in California because he specializes in Cushing's and he really listens, but it is a big decision to make if you aren't from there. Welcome to the forum, and i hope you get some answers.
  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 anymore. Man I loved those crazy days!!
  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 have mental retardation and behavioral and learning difficulties, but generally can function in society to some degree. From infancy they can have feeding and muscle tone issues, and I have even seen severe cases where children ended up on ventilators due to the severe lack of muscle tone in the muscles necessary for breathing. It is really a sad syndrome. What is amazing to me is that I have worked with both children with PWS and Angelman Syndrome, and even though the problem is at the exact same location on the chromosome, the two syndromes are almost opposite. Children with Angelman syndrome are typically very thin, they have severe and profound mental retardation, suffer from seizures, and very tight and spastic muscles which causes them to walk in a very characteristic pattern for which the disease was first named "happy-puppet syndrome." This is one of those cases that makes me very interested in genetics, and makes me think that we don't really know a "speck" about how the human body really works!!
  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. I was using my wheelchair tonight, and two girls were there from the children's choir I help lead. They helped me pick out my "gifts" when it was my turn. I ended up with a wooden tissue holder with a handle to carry it around, decorated with little hearts on it. We decided that was great for me, for after brain surgery, and the whole children's choir was going to sign it for me, and the two girls started by signing their names tonight. I almost started crying, as I thought how blessed my life was. Praise You in This Storm By Casting Crowns I was sure by now,God, that You would have reached down and wiped our tears away, stepped in and saved the day. But once again, I say amen and it's still raining as the thunder rolls I barely hear You whisper through the rain, "I'm with you" and as Your mercy falls I raise my hands and praise the God who gives and takes away. Chorus: And I'll praise you in this storm and I will lift my hands for You are who You are no matter where I am and every tear I've cried You hold in your hand You never left my side and though my heart is torn I will praise You in this storm I remember when I stumbled in the wind You heard my cry to You and raised me up again my strength is almost gone how can I carry on if I can't find You and as the thunder rolls I barely hear You whisper through the rain "I'm with you" and as Your mercy falls I raise my hands and praise the God who gives and takes away Chorus I lift my eyes onto the hills where does my help come from? My help comes from the Lord, the maker of heaven and earth I lift my eyes onto the hills where does my help come from? My help comes from the Lord, the maker of heaven and earth Chorus
  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 someone's assistance I know, stupid, huh? It is like it is my statement that the only thing this disease hasn't taken from me is my independence, my dignity. Tonight I didn't need the wheelchair but my brain just didn't want to work. I was in such a fog, but was in a good mood, and the guys I was playing with realized that if they kept me talking I couldn't do two things at once and I went out pretty quick. It was fine, and I just gave them a hard time of taking advantage of the "disabled"! I actually have opened up to some people about what is going on in my life and have made some new friends. I just look around though, at everyone else my age, and they are married, and have kids, and I go every night by myself, and there are some nights where I feel so alone. So, I came home tonight, and my 10 y/o neighbor has been sick with strep since this weekend. She has had 48 hours of antibiotics, so I felt safe going over and checking on her. She had called me yesterday saying she had really bad cold sores all over her mouth, so I suggested to her mom she buy some L-Lysine and call her pediatrician. When I called to check on her this morning, her mom had still not bought her the medicine, which costs a whole $2.75. Her mother "said" she called the doctor, and that he said the medicine for her throat would help her face. I am not sure if she really didn't call, or the doctor is just not that great, but antibiotics don't work on the HSV-I virus that causes cold sores. So I bought the L-Lysine after my game and took it over to her, and when I saw how bad her face looks I was disgusted with her parents. She can't even open her mouth because there are sores around the corners of both sides of her mouth and she says there are sores on the inside of her mouth, gums and tongue. She refused to swallow the big pill, and didn't like the taste of it crushed, and it was late, so we will have to work on getting the medicine down tomorrow morning. But while I was attending to my neighbor and comforting her in bed, her mom just turned out her own bedroom light and went to sleep. It just makes me so sad everyday that this little girl lives like this. I wish I was cured right now so I could file a private petition for custody, and we could move somewhere far away and start a new life over. But for now I just take care of her, protect her, guide her, teach her, and pray. Here is a song I heard the other day that I decided to make the new anthem of my life, I am standing my ground! It is by Natalie Grant. "Will Not Be Moved" I have been the wayward child I have acted out I have questioned Sovereignty And had my share of doubt And though sometimes my prayers feel like They're bouncing off the sky The hand I hold won't let me go And is the reason why... [Chorus:] I will stumble I will fall down But I will not be moved I will make mistakes I will face heartache But I will not be moved On Christ the Solid Rock I stand All other ground is sinking sand I will not be moved Bitterness has plagued my heart Many times before My life has been like broken glass And I have kept the score Of all my shattered dreams and though it seemed That I was far too gone My brokenness helped me to see It's grace I'm standing on [Chorus] And the chaos in my life Has been a badge I've worn Though I have been torn I will not be moved [Chorus]
  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 gorgeous coat. Well about 10 months ago I got a new puppy, she is a shepherd/chow mix (not uite the beauty her sister is, but special in her own way). My lab is pretty much full grown and topped out at about 65lbs. Well the puppy turns a year old in a few weeks and she is about 70-75lbs, and I figure will probably add 10-15 more before she reaches her full adult weight. So the lab has decided to revert back to her wild pack instincts, and has started randomly attacking the larger puppy, just to remind her that she is the alpha dog. What is funny is that my puppy has such a submissive attitude even if she weighed 100lbs, I think she would roll over and show her belly. But now every time I leave I have to crate them in separate crates, and keep a pot and metal spoon handy in the house as well as a squirt bottle in case a tussle breaks out in the house. I can't wait until I have human teenagers!!! By then the dogs will be to old to sic on the kids! It is another hot night in Tucson. How I wish I had the motivation/strength/eyesight/gas money to go for a drive up Mt. Lemmon, and gaze up at the stars from the cool mountain air. Instead, I have the cooler on, windows closed, and am settling for Law and Order and puppy kisses. G'night!
  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 a little bit about molecular chemistry and proteins then you know that shape is very important to how proteins are able to function) in certain disease states. So, in Cushing's disease they found that two carbohydrate groups are actually missing off the protein. Now c-reactive protein is active in our bodeis in the acute inflammation process and is a necessary part of the immune system. They didn't go into this specifically, but they talked about the protein's decreased ability to bind to its targets due to these missing pieces, and I was thinking this may be a huge piece of why people with Cushing's have "weakened immune systems." They didn't really delve into those aspects specifically though as their research was really cutting edge, the first time anyone had ever looked at the molecular shape and hypothesized that it might be different in diseased states. This article was in 2003, and not in the US, so I am really hoping that there has been more research since then. And ultimately, wouldn't it be great if a "test" for Cushing's could come out of this research, just by isolating someone's CRP and looking for these very specific changes. I will put the link to the article in the post, but I am warning you it is a very dense article and even I skimmed over most of their methodology, but I would recommend reading the introduction and the conclusion, they are both moderately easy to follow along. C-Reactive Protein and Cushing's Article
  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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