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~Chief Cushie~
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Blog Comments posted by MaryO

  1. I was telling my counsellor about this new project on Wed and now I've set up one for her, too. There's no real info on it yet because she's going to do that, but I did the layout and stuff. I even got her a theme with frogs on it, because she collects those :) Somehow, I don't think she'll use that one!


    Anyway, if you just want to see the barebones thing, it's at http://www.louargow.com/ or maybe when you get there, she'll have put some real stuff up.

  2. Thanks, Adrienne!


    Yes, I have the big scar and the numb abdomen.


    I was told by doctors not to take the NSAIDs anymore - I've been taking arthritis meds for about 30 years or so and my arthritis is really killing me.


    I can't take the GH anymore, and I'm supposed to "cut down" on vitamin C but no one has ever told me what to cut down to.


    Sometimes, I get so down about this. Friends, family, everyone thinks that since there was no chemo or radiation, I'm homefree and this isn't the case at all. I didn't have chemo or radiation because there is nothing yet that will kill kidney cancer :) There's some stuff still in clinical trials, but nothing standard yet.


    I can feel myself on the way down again and I hate knowing that the depression is coming :)


    Thanks for responding - it's nice to know that others are living just fine with only one kidney :)

  3. I just updated my bio. I said:

    Update October 26, 2006


    I went to see my Johns Hopkins endo again last week. He doesn't "think" that my cancer was caused by the growth hormone although it may well have encouraged the tumor to grow faster than it would have.


    He was happy to see that I had lost 22 pounds since my last 6 month visit. Not all of that was from surgery! He reminded me that I can take more cortisone, but I hate to do that because I gain weight so fast when I take more.


    He thought that my blood pressure was low - for me, not for "normal" people. He took my pressure several times, lying down, getting up quickly. But I never got dizzy. Maybe my pressure increase was temporary when the cancer started. All these mysteries I have that no one can answer.


    My energy levels are lower than when I was on GH, and they're lower again because I had the adrenal removed, because of my panhypopit, because of my cancer (even though currently NED, it can come back at any time, because of my GH deficiency...


    Every day is a challenge getting up, doing something useful, doing something without arthritic pain and weakness, having the energy to finish even something "easy". I'm starting to get very depressed over all this.


    If this is the way the rest of my life is going to be, why bother?

  4. Crap!


    I just went to see my endo again on Thursday to see how things are. Although I know how they are - I'm still tired, gaining a little weight, getting some red spots (petechiae) on my midsection.


    My endo appointment is over. Turns out that the argenine test that was done 2 years ago was done incorrectly. The directions were written unclearly and the test run incorrectly, not just for me but for everyone who had this test done there for a couple years. My endo discovered this when he was writing up a research paper and went to the lab to check on something.


    So, I'm off GH again for 2 weeks, then I'm supposed to be retested. The "good news" is that the argenine test is only 90 minutes now instead of 3 hours.


    He also noted that I have a "little" buffalo hump again.


    I was just looking through my bio again and noted that I'd said in 1999 after I had my first Insulin Tolerance Test: But the most amazing thing happened. Saturday and Sunday I felt better than I had for 20 years. I had all this energy and I was flying high! So I hadn't felt well in the 20 years before 1999 either?


    I was so stupid way back in 1987 when I thought that all my troubles would be over when my surgery was over. I have now been sick with this stuff sine at least 1983 - 23 years. Even if I should get my life back, I'm nearly too old to enjoy it.


    My life is mostly all sleeping. What a bummer!


    And so I wait for the next test...

  5. Well, Sue is home now and has started with hospice. She's had Last Rites. She's in pain, depressed and scared.


    I am so afraid of losing my good friend :)


    Many people on the boards seem to think that she'll be back to read what they've posted in her thread. I sure hope that they're right and I'm wrong.

  6. Well, I guess they're averaging out. Alice is feeling a bit better - Sue is feeling a lot worse :)


    I'm so worried for Sue. When I talked to her yesterday she sounded so weak.


    She's stopped taking her morphine in the hope that she could keep food down - so her pain is returning


    She doesn't have any steroids so she's not as hungry as she was in the hospital, so she's getting weaker.


    She's freezing cold all the time and can't get up from the sofa or toilet easily.


    Her daughter tells her she looks so old because she's so thin from not eating and vomiting.


    Normally, I'd post all this on the board, but I don't want things to sound like they're impossible, but everything sounds so difficult for her right now. She sounds scared, though. She wants to eat and get stronger but can't.


    I sure hope that her doctor can give her something tomorrow, something that will help her take her morphine, eat, gain weight, be strong, beat this thing.


    I'm spending so much time worrying about my friend and I don't feel like I have anywhere but here to talk about this. I try so hard to sound up and cheery for Sue but it's getting harder all the time.


    I need to go get a tissue...

  7. It absolutely amazes me. I went to a whole lot of trouble putting up a new membermap for the boards, as of this writing 29 people read the post about it and not one said it looked good or thanks, or acknowledged that it was even there - although 2 people added their info to it. At various times people have said that they'd like this feature. Guess they changed their minds.


    Lots of people email me asking for help, information, asking me to do things for them, but so few rarely take the time to ask if I'm ok, to say that they noticed I hadn't posted here on the boards for weeks, hadn't been in the chat.


    When the site's birthday rolled around last week the responses were fewer than for many people's birthdays. This site, which is supposedly so helpful to many wasn't worth a word or 2 of congratulations.


    I know if I post this on the boards, people will rally around for a day or so, then I'll go back to being invisible, the one who is supposed to do all the work in the background, but who is always supposed to be "ok", to never have any problems, to never need any kind words or help or support herself.


    Whine, whine, whine. Guess it's time for a little wine, wine, wine!

  8. You'll be in this area in a couple hours, then. Woo Hoo! Please remember to call.


    No signs of any hurricaines here, yet. We had some rain on Friday night, but nothing serious. Yesterday was beautiful and today looks even better, just because it's a bit cooler.


    Sounds like your family is suffering from serious issues, too, but it's time to take care of YOU and get you on the road to recovery.


    Talk to you soon. :angry:

  9. What questions do you have about what to expect? I've spent a LOT of time at NIH and can probably answer most of them. So can others who have been there.


    Myra was just there last week - she usually comes to the chats, so if you come tonight, she might also and the two of you could talk.


    I have a Music Camp at my church that I have to play for next week, in the afternoons. Since you're going to be at NIH for 2 weeks, I'll probably come the second week, if it's ok with you. I prefer to come in the afternoons to avoid rush hour traffic, and the testing at NIH and doctor visits are usually in the morning (but not always) so the afternoons usually work out better for me.


    If you find that you'll be leaving sooner, I'll try to come one of the mornings instead, or over the weekend.


    My number is 703-378-6805. Please call when you get there to leave your room phone number and your room number. If I'm somehow not here, we always have an answering machine on. I also have a cell phone, number 571-239-7352.


    Looking forward to talking to you and meeting you soon!

  10. Thanks for the responses, Adrienne and Cristy. I've always wanted a blog and even set up one elsewhere, but never found the time or the energy to actually write anything in it, so it went by the wayside. This is a bit easier, since it's right here, where I am most of the time, anyway.


    Thanks for the positive comments! This disease is so terrible, b ut no one can see how badly we're feeling. Since I had my surgery so long ago, everyone assumes that I'm ok, recovered, that Cushing's is behind me.


    That's one of the good things I'm finding out about these Cushing's awareness bracelets - people are asking me what they mean and I can educate them about Cushing's. No one ever asked me what was on my Medic Alert bracelet. LOL


    In just the last 5 days, 6 people have asked and learned a bit about this who wouldn't have had a clue otherwise.


    Anyway, one more piano student for today and then NAPTIME! Sometimes I think that my life is little bits inbetween long naps. Swell fun....NOT!

  11. Back from the latest trip, to Amelia Island in Florida. I had a wonderful time, but I'm exhausted - still, and always. I wish that this would get better already.


    I was hoping that the GH would make me less tired, more energetic, something. I think it's helping me with the ability to travel a bit more, but I still need that nap. I'm getting so tired of falling asleep at parties, in public places, wherever I am.


    Got my ankles crossed that this will improve - soon. I'm missing so many hours a day :angry:

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