Halo HeavenlyRN!

Discussion in 'Chit Chat' started by teacher, Feb 12, 2010.

  1. teacher

    teacher New Member

    I hopped over to the CFS/FM board and saw that your hubby has Cushings.

    I have a friend that has that and is in recovery from the surgery.

    Just curious as to hubby's status.

  2. HeavenlyRN

    HeavenlyRN New Member

    Hello Teacher.

    Hubby's status is up in the air. He has tumors on both his adrenal gland and pituitary gland. Unfortunately neither of them is big enough for surgery to take place. Neither of them is putting out enough "bad stuff" for the lab tests to pick up on which tumor is causing the most problems. As you may know, they can't just go in and take one of the tumors out hoping that it's thr right one. Because, if it's the wrong one, then they have to take the other one out and he would have to be on replacement hormones for the rest of his life.

    Cushings is a strange disease. He was sick for a year before we finally got in to see an endocrinologist. What a joke that was! Of course they did lab tests and found out that he had diabetes. So, from then on that's all they were focusing on. He had already developed "the belly" and they just told him to lose weight. Well, duh.....if had been that easy to lose weight, he would have done it already. I finally had to ask the doc to check for Cushings. They did, and lo-and-behold.......he tested positive.

    So, his Current status is that we sit and wait, sit and wait, sit and wait!! We finally went to a specialist at the University of Pittsburgh because we felt as though we were going nowhere with our doctors here (in Rochester, NY). They did more thorough testing and have told my husband that he has to get worse before he can get better. In other words, one of the tumors has to "present itself" as being the one causing the problems - then they can do surgery.

    How is your friend doing? We've heard that the recovery from surgery is almost worse than the time leading up to the surgery. How long ago was the surgery? I hope he/she is doing well.

    Thank you for asking.

    Oh, and by the way, we have 4 teachers in our family! A wonderful and honorable profession. And a difficult one also. It's almost like nursing I would imagine. Not only do you have your students to care for, but you have to answer to the families as well. As far as I'm concerned.....that's the hard part!!

  3. teacher

    teacher New Member

    but as you know, with ME/CFS your mind ain't what it used to be!

    I'm thinking she had her surgery a year ago this coming June? She went to Pittsburg, I belive.

    She was trying to go to Texas, but something was crazy with her insurance.

    She had to go to California to get diagnosed because no one here in OH would believe her that some thing was wrong. She, too, was told to lose weight and she'd feel better.

    As soon as I read the post about your hubby, I asked her where was a good place to send you online.

    She said for you to try


    You will need to register before you can access the site, but the registration is free.

    She's doing the hormone thing now. Some days are better than others. Some moments are better than others.

    BUT she's losing the stomach! And she's getting to the place where you can tell the difference between her head and her neck! Whoo hoo!

    So, that's all I know about Cushings. Maybe that site will tell you someting you can do while you sit and wait? It should definitely put you in touch with others that are dealing with this strange and debiltainging illness.

    As for teaching, I enjoy what I do and I don't have to worry so much about answering to the parents. I teach Music!

    It's a bit difficult for a child to look a parent in the eye and say that they can't behave in a class that meets for 40 minutes once a week. Especially since most of the class is spent singing! LOL

    Happy Valentine's Day!
  4. HeavenlyRN

    HeavenlyRN New Member

    No, no one has ever mentioned a neuro-endocrine tumor but you can betcha I'm going to check that out! Thank you.

    Teacher, thanks for the further information. My hubby did go on to a Cushings web-site for quite a while but he began to get bummed out because he felt that there was way too much whining going on and it depressed him. You know, that's what I like about these forums, there is certainly whining and "why me?" going on (I'm thinking mostly about myself when I say that!!) but the responses from others are so positive and have made me feel good. AND, just hearing other folk's experiences has helped me immensely.

    This is a good group of people and I'm happy to have found you all.
  5. HeavenlyRN

    HeavenlyRN New Member

    Thanks for telling me abut those sites. I went to them and printed out a bunch of stuff (I HATE reading long articles or things with big words (!!) on the computer screen. I haven't finished reading all of the information, but I do appreciate it.

    Will keep you updated. Thanks again