Jump to content


Over 2000 Posts
  • Content Count

  • Joined

  • Last visited

  • Days Won


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


      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


      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


      You girls are gonna have some crazy Cushie fun!

    2. NancyJ


      Yup! Come join us!

    3. 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 that won't charge for changes if you need to change your flight for whatever reason. This saved me a heap of money because I needed to be inpatient 10 days instead of 4. 3) The travel people can also book you a hotel, or you can do the research on your own. You'll need at least two nights before surgery, a place for your guests to stay while you're in (the lowest number of days in patient is 4 days), and I recommend at least a night or two in town to make sure everything is okay before you fly home. Those extra days post-op make flying home SO much easier. Extended stays are nice, but you incur more cab fare. The Rotary House is amazing and comfortable. 4) Have all your questions for IMCC (and your family, too) written down so you don't forget. He'll spend as much time as you need. We call it Marathon pre-op day because you'll have lots of appointments all in a row. Use this website to help you find your way around. It works well! http://access.mdanderson.org/home/?CFID=41...FTOKEN=16468369 You can also access your medical records online with my.mdanderson.org. 5) Bring all your meds with you. Sometimes they don't have the ones we need as Cushies, and they'll tap into yours and replace them when they get the meds in stock. This includes your take home meds, emergency kit, etc... 6) If an MD Anderson Endo comes into your room, tell your family, the floor nurses, the residents, EVERYONE that you're a Cushing's patient and only IMCC will be treating your endo needs after surgery. I can't stress that enough. Ask Paula what you should do if an Endo comes in to treat you. 7) Don't overpack. You won't need much. Travel size toiletries for your first shower post-op (I wait until the balloons are out, much more relief that way), PJs to change into after your first shower, iPod to drown out hospital noise, etc.. I bring candy and put it in a dish in my room -- the nurses and doctors come in to visit just to get candy! A light ice pack will feel good on your face or behind your neck. 8) Take advantage of all the patient services, beauty salon, massages for you and your family, library, etc... They are WONDERFUL 9) They do screw your head to the table in 3 places. It sounds kinda archaic, but it's not bad. Just remember you're going to wake up with 3 sore spots on your head. 10) the pain is going to be different than other surgeries, but ask for pain meds if you need them. I needed morphine every 2.5 hours the first night, then every 4 hours during the next day. Vicodin worked after that, but it tends to bind you up more often. Start Colace tabs before you go to help with stool softening, and if you haven't had a BM within 2 days of surgery, ask them for stronger stuff to help you. You'll want a nice soft BM for a while! 11) On Day 2 they with hold your afternoon cortisol to check your blood on day 3. Ask for Phenergan to help you sleep (and gets rid of nausea), or Zofran to help with nausea. I projectile vomited across the room and it wasn't pretty! 12) The plane ride home is a little rough sometimes. A Xanax will help you relax (take it after you get on the plane), and ask for some Zofran in case you get queasy on the plane. 13) Use wheelchairs at Houston airport! Just request a wheelchair and they'll wheel you everywhere you need to go. I did this both times and it was a life saver both times. It is much easier on your family too. Wear your compression stockings on the plane -- the ones they put on your legs in the hospital. 14) the best rule with family: You need them more after surgery than you do during. The family waiting room is comfie with computers and nice soft chairs, so be sure your family is getting rest. That first day you need an advocate, a gofer, and someone to make sure you get your pain meds. They won't get much sleep in your room the first two nights, so shifts are good so they can go back to the hotel and get some real sleep. 15) Family gofers: chapstick, water, ice, foot rubs, cool wash cloths, etc... Let them do for you to make you feel more rested and comfortable. With the balloons in your nose the chapstick is a lifesaver. I prefer the Bigelow lip balm (From bath and body works) because it lasts forever. ....
  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.
  • Create New...