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LoriW

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Everything posted by LoriW

  1. As I see Gaby on her up and down days, I find that I may have been neglectful of her symptoms over the past few years. She told me she was dizzy and had a headache, right behind her forehead. Her obesity was just her stomach and back. I saw the hump. For some reason I thought and reasoned out every symptom. Basically that she was lazy, and didnt want to do anything with the family. This is causing relationship problems between me and my husband, he thinks she is faking it most of the time. I have told him about her enlarged pituatary gland, and her other symptoms. He is not overtly concerned about her health. I can tell she is sick, her eyes are sunk back and have dark circles. She gained 7 pounds this week alone. Constant headaches, her vision is blurry at times. The problem is Gaby has cried wolf before. Not that she was sick, but when she was sick and wanted to go do things with her friends. She is be in pain and be tired and try to act normal when she wants to go out. So how do I know when to let her go? I don't, its a guessing game that is played. My husband does not read up on this disease, or its symptoms. He thinks that if she is woken up in the morning, and keeps busy all day, even in the heat, that she will be fine. He is really kind of upsetting me with this. I rule in the side of caution, where he thinks she can push through the pain, and that the tiredness is just being lazy. Lori W
  2. LoriW

    MRI

    Gaby had an MRI today, with and without contrast. I am anxious for the results, wondering how long it will take to get them. I have a copy to send to a doctor that deals with cushing's disease. I have been trying to reach her doctor so she can get a midnight cortisol blood draw. Of course, its almost 6pm now, no call from her doctor, and from I have read she would test high right now. She says she is awake from 1 or 2 am to 5 am or later, can't sleep, thirsty all the time. But of course no luck getting a hold of him. Gaby does not know all the details of cushing's disease, she knows it's a tumor, but that is about it. I don't want to stress her, or make her worry for no reason.
  3. LoriW

    Gaby

    Gaby went canoeing with friends came home exhausted, and bruises and scratches all over her. She had a great time, jumping off bridges -ugh teenagerrs. I guess I will keep track of her healing rate. I am nervous about her upcoming MRI, hopefully will get some answers. She is still in a low I think, she sleeps through the night, but she is tired during the day. She woke up twice the other night because she was so thirsty, she said she thought she was going to die. I read of many people hear that have problems with blood sugar and insulin resistance, her CBG was 78, which a guy that I work with is paramedic, says that is too low.
  4. Chrysta,

    I read that to, and am terrified for my daughter. This is all so new to me, I feel like my head is spinning, I can't imagine how my daughter or someone with this disease feels.

  5. If anyone knows of a Doctor in Arkansas or around Arkansas, someone mentioned the main three doctors, who are those? Dr. F seems to be mentioned alot, how does that work, does he order the tests and we have them done here and he reads the results or do you have to see him to have the tests run? I can't afford to fly/drive my daughter to California for what sounds like is going to be a long journey.
  6. LoriW

    Help!

    I'm not quite sure how to go to make a new comment on the same blog, but Gaby has had a really bad day. She was dizzy and said she was tired and just felt like crap. Without a diagnosis or even a prelim. I want to keep her active, but not sure that is the best thing for her. She is walking and swimming (won't take off her t-shirt or shorts), her depression at times like today is severe, and I worry that she is not coping well with the idea of cushing's disease. I wonder if this is nomal 16year old feelings, or are her hormones completely out of whack. Will it cause problems if I have her keep walking when she says she feels bad? My daughter is now crying cause she can't loose weight. What tests need to be done? Her PCP has only checked her cortisol level once. I don't know what to say to help her, please give me some advice. Y'all have been through and continue to go through this daily. Words of wisdom would really be helpful right now. Thank you and God Bless
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