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casperslove last won the day on October 5 2011

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About casperslove

  • Birthday February 3

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    central NJ

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  1. Finally!! I've been fighting with my local EMS to carry it for a while now! Had no idea there was a waiver & it got passed! Awesome!! Thanks Mary!!
  2. I took one of my kids to the ER in the spring & we both had a face mask on so as not to get sick from the flu going around. Well the nurse said she understood why my kid had one on but why me? I told her I had Addison's & did not want to get sick. She was like "what's that?" I have done everything possible not to have AI cuz I think this hospital would kill me!!
  3. I didn't have problems with my memory too much before surgery, but I've found I struggle post op. Names & numbers don't stick. I went back to college to learn photography & I learned I need to do & not just hear things to learn. Hmmm not sure on this one myself. If it is due to the Cushings, it should fix itself. Usually the tumors are still there. The tumors either grow back or the surgeon just didn't get it all. That's why you need a good surgeon. After surgery the doctors wait to see if you "crash." That means they want to see your cortisol levels go as close to 0 as possible. How your body handles weaning cold turkey basically. My first surgery, I didn't crash. My second surgery, I got below 0 before they gave me steroids to compensate & wean down manually. For some people, they have tumors on both the pituitary & adrenals. They only realize it after the pit tumors are out.
  4. That is quite a good sized tumor. Mine was only 2-3mm. But Melly's right. Being cyclical vs florid makes a big difference. Majority on this board are cyclical, so that's why more surgeries are needed. I had 2 pit surgeries & have been in remission for over 4 1/2 yrs now. I hesitate to say the "c" word as I don't want to jinx it. Having an experienced surgeon who knows what he's looking for & how to remove the tumor just so, is very important. Make sure you find out how many he's done. A handful just won't cut it. (Literally & figuratively.)
  5. Prolonged exposure to very high levels of cortisol (such as due to Cushing's syndrome) can result in weight gain. But honestly when you get a doctor that doesn't even want to do research to understand, it's time to move on. Many of us have been from doctor to doctor to doctor to find one that will listen. I hope you can move on to find someone who will help you.
  6. I love the mobile version!! Thanks Mary!
  7. Hey! Call me or message me or fb me about Dr. L leaving, please. Yikes!!! I was just there in Nov. and he didn't say anything. Who is taking over??? Love you B

  8. I don't have any direct link as my father never went to Vietnam, but my uncle did. He had developed all sorts of problems & in the end died of non hodgkins lymphoma. The doctors said it was all from his exposure to agent orange. He had no kids tho because of the fear he would pass something horrible on.
  9. Hello...I went to records and they are not open they leave envelopes outside the door to fill out and you can have them sent to your doctor free or you pay so much a sheet then put in envelope with your addy and all on drop in the box. Yes he did send me with spit tubes..and diary, I am doing the diary but he never mentioned when I am to do the spit tubes?????? Lab order for later 3 months urine.

  10. Wow Cyndie!!!! That's AMAZING!!! I guess I'll have to check out ancestry.com too!
  11. I like the Flex and the Specialty Flex myself.
  12. I think this has been posted before but its always a good reminder. I had PCOS as WELL as Cushings. But the cushings made the PCOS symptoms worse. I had that for many, many years before I had Cushings. And of course that's all docs looked at instead of looking that something else could cause the symptoms to get worse.
  13. Like Steve said, with cyclical cushings, that's a little different, but it gives generalities. Good to hear it's out there tho!
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