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missaf

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Everything posted by missaf

  1. My little boy is doing a walk to support a children's hospital here in California. If you'd like to help, send me a message!

    1. saberlowe

      saberlowe

      Tried sending you a message, but your Inbox is full. I'd love to make a donation!

  2. Isn't this place contentious enough for a support group without negative feedback?

  3. is asking for prayer for a job test today.

    1. Nillie

      Nillie

      will pray for you! good luck!

    2. saberlowe
  4. sarcastically loves it when Cushing's causes massive pitted edema on her legs!

  5. This is another reason I think pushing for a clinical trial of the cortisol pump among BLAers would be an amazing thing to do for one of our docs.
  6. I have a smart phone just so my phone can play Bon Jovi's "Bad Medicine" when it's time to take my meds
  7. That makes sense, your tissues aren't overwhelmed with a big dose, and you're getting closer to a biological release that way. It still depends on the person. I know some of us are doing very well with just low doses of Prednisone to spread throughout the day.
  8. had a great time with NancyJ tonight!!

  9. I just don't drink soda, period, or tea, or coffee... When I do, my liver and kidneys complain quite loudly, and my urine tends to match the color of Coca-Cola When I do dirnk soda, it's only coke zero -- love splenda! Stupid Cushing's.
  10. Thread hijack! I've not seen anything pass through so far except things like type 2 diabetes, pancreas damage, liver damage, etc... but AO is a growth hormone antagonist in plants, I'm betting good money that it messed with the pituitary gland for certain. I put my birth defects on the registry and was told that they weren't tied to AO, but when my dad was in Vietnam and saw photos of other girls with the same problems and talked with a Vietnamese doctor, he knew for certain they were tied.
  11. gets to meet NancyJ next week!

    1. saberlowe

      saberlowe

      You girls are gonna have some crazy Cushie fun!

    2. NancyJ

      NancyJ

      Yup! Come join us!

    3. saberlowe

      saberlowe

      Sure wish I could!

  12. Aha! I remember that study! It talked about faulty development of the HPA and how the axis would be expecting more cortisol thanks to childhood trauma. This explains so much. That fits my childhood and teen years, too. But I also have the complications resulting from my dad's Agent Orange exposure and the signs and symptoms I was born with that Endos like Dr. F found interesting.
  13. Cushing's is still Cushing's, even if you can't get high urinary free cortisols and salivaries. How are your 17 hydroxysteroids? A flip in your diurnal cycle is a huge key.
  14. Mifepristone even makes me nervous. If you paralyze too many cells and their cortisol uptake, you're still going to run into the feedback loop resistances and it sounds lie your body will become an adrenaline junkie just to get through stressful situations.
  15. Wow, it's interesting how many patients require hypopit treatment after removal of tumors for other reasons. This is s great study. I really feel bad for those who have pit tumors removed for other reasons that are just left high and dry without replcaements.
  16. I have a friend who is working with a researcher at Harvard in regards to her FM starting directly after she contracted Lime Disease. FM as a root to Cushing's? Uh, no.
  17. Wow, was that website confusing to any other cushie brain, or was it just me?
  18. The uptake receptors are still going to be affected, so I highly doubt the possibility of Nelson's is completely removed.
  19. Done, me and my 4 pit tumors! I'm probably not in the area tho.
  20. Corlux is the drug involved in the SEISMIC study on Cushing's. It's RU-486 under a different name.
  21. I'm tempted, too. Especially since my dad is a veteran and his module doctor blew him off when he asked about Cushing's (he's textbook in every way from Agent Orange).
  22. My MD Anderson surgery tips 1) After all your records are with IMCC, you'll get a number to call to schedule surgery. They will give you all the details they think you need (isn't much). Be sure to get your medical record number, you'll need to memorize it. Ask the scheduler for a Wednesday surgery date if possible. You'll get to fly in on Monday night, Marathon Day on Tuesday, surgery Wednesday, and you can be home by Sunday if everything goes perfect. 2) Call MD Anderson Travel and check their ticket prices once you have your Medical Record number. They can get you a ticket t
  23. ^^ Agreed, Phil. We are here for support, and dealing with health issues very few can understand. Humor and fun and games are always welcome because laughter is good medicine, but I don't see where ridicule and flaming fit in anywhere in life, especially in a place where people just like us need support.
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