Hit with a double whammy today! Need help!

Discussion in 'Fibromyalgia Main Forum' started by Saoirse3, Aug 1, 2012.

  1. Saoirse3

    Saoirse3 Member

    Or just to tell someone before I go off the deep end. First off, my daughter called last Thursday in hysterics. She couldn't move her head and she couldn't see, and she was terrified. She has two small kids (8 and 3) and couldn't leave them, but finally a friend came and she went to the ER. She has Pseudotumor Cerebri, and her head was filled with fluid and swelling rapidly. She also has swelling and fluid in her eyes. They did a lumbar puncture and drained the fluid from her skull this morning, but she needs to have another surgeon drain her eyes. I am so afraid she could lose her sight permanently! Her ex is being a complete jerk, saying he will NOT take the children "just because of her medical BS!" And he wonders why Karma keeps biting him! My husband will probably need to fly out to take care of her and get things set up. But that will leave me alone for a week. We can't afford for both of us to fly from Anchorage to NC, so it was decided he should go. He's the stronger, by far. Please pray for my daughter!

    Then I went to see my pain specialist, and all of a sudden it was like I was seeing another doctor. She was absolutely gung-ho about this neurotransmitter, sent me to the spine doctor, who said it was doable, and today she was like "Well, I read all your other doctor's notes and you are too big a risk for anyone up here!" I pointed out that her notes were from 2009, I have lost 50 pounds since then and I have had two procedures and NO bleeding issues at all! She also got really snippy when I told her I was seeing another pain doctor as well. I told her it was MY money, and if I wanted to see 10 pain doctors, it was MY choice, not hers. Then she yelled at me for the Ambien, saying it was a "bad drug". I said "And yet, you prescribed morphine when I clearly stated I was allergic to opioids, and that doesn't seem to bother you? Well, it bothers ME! And I am getting REALLY tired of getting told one thing and then another. I KNOW there are other options for pain, such as peptide injections. But of course, you've never heard of them. I'm tired of being denied the pain relief that I KNOW is out there!" And she says "Well, YOU chose to live in Alaska, so you CHOSE second rate medical care when you moved here!" (I did WHAT???) With that I said "Yes, and I'm looking at it now" and got up and left. So, with my PCP leaving his practice and my pain doctor flipping out because I'm so "high risk", I guess I will have to reassemble "Team Stacey" and find new doctors. I am SOO tired of doctors saying they won't touch me because of "all my health issues". I didn't ask for them, I don't like them, but it's what's on my plate and in my body. If I could have a body transplant, I would! So I am a little discouraged, a LOT scared, trying desperately not to cry (that's not working too well) and hoping tomorrow will be a better day. I saw 3 eagles on the way home, so hopefully that is a good sign! Thanks for letting me vent.

    Soft hugs,
  2. MicheleK

    MicheleK Member

    Oh Stacey, you poor dear one. First of all I am so sorry to hear what your daughter is going through. How very frightening! Being a parent who went through a son's tramatic brain injury experience, I know how your mind and heart race with worry over your child, no matter how old they may be. I'm sure it is heartbreaking to you to not be able to go be with your daughter. Please, please let us know how things turn out okay?

    And as for the doctor issues. It's absolutely maddening and exhausting! I am sorry that you will have to reassemble "Team Stacy" as you put it. It's a fulltime job sometimes and makes you just not want to see another doctor again. But when you've got multiple issues and some that require medication, what choice do we have? We have to keep looking and sometimes we do get treated in an unprofessional and inhumane way.

    I am always telling my husband that I need to go to the "new body store" and for him to find one on the map. We just chuckle. Sometimes we cry. Whatever it takes to get through. You sound like a trooper. And yes, your day was a very rough one. Hugs, MicheleK
  3. gb66

    gb66 Well-Known Member

    I hate that you're having to go through all this stuff. I know you're scared and I also know you'll not give up! It sometimes seems to just never end. How is your daughter doing today. I've not heard of that before but it sounds like it's serious. I hope there's no damage to her eyes or anything else. Poor thing.

    Your doctor souds "delightful". I've had my share of these experiences as I'm sure all on this board have.

    I hope you can find another one soon that is understanding or at least makes it more clear about your treatments.

    Did you go back to Dr. H.? Is this the procedure that you're talking about.

    I've been reminded a lot lately about how fortunate I am to have the health that I do have. Yes, I have several disabling and painful conditions, but none are life threatening. Last Friday my oldest daughter's first boyfriend, back in the 1970's when in high school, had a heart attack and died. He was only 55 years old.

    Our family had kept in touch with him through all these years and he was a very sweet, caring person. It has been devasting for all his family and friends.

    Then, yesterday her ( my daughter) MIL had to have emergency surgery for a ruptured bowel. She was in horrible pain and her body was filling with infectious material. She's in an induced coma now with a 50-50 chance to pull through. She also had a heart attack a couple of months ago. I think she's in her 60's.

    Life is so hard. I'm praying for your daughter, for you and your husband and her children. Let us know how it goes. Hugs GB66
  4. mbofov

    mbofov Active Member

    check out acam.org - maybe you can find a good doctor there - it's a link my L.A. doctor who does the peptide injections gave me for integrative medicine doctors - there are some in the Anchorage area - sorry for all your troubles!

    Best wishes,

  5. Saoirse3

    Saoirse3 Member

    My daughter is doing a little better, she's home now, but still can't see very much. I was able to get her the meds she needed (my Visa is going to burst into flames one of these days, but for this I would sell Alaska back to the Russians!). I feels so bad for her because her love is online gaming and the X-Box is pretty quiet now. Her 8 year old has become her "eyes" for the time. What REALLY bothers me is that she was forced to go back and live with her kids father (she had nowhere else to go) and he won't lift a finger to help her. He won't even take the kids for an ice cream cone, after I sent a little bit of extra money. I can't wait until we move back to the south and I can do things with my grandkids!

    Saw my regular PCP for the last time today and he is going to move to Idaho. He thinks my idea to reassemble my "team" up in Anchorage is a good one. He said it's ot that we have "second rate medicine" it's just that we lack all the bells and whistles the big cities have. We don't have a trauma center, so the "big emergencies" are airlifted to Seattle. Sine we don't even have a million people in the entire state, the politicians aren't in any hurry to spend money on a major medical facility. They'll build a bridge to the middle of nowhere, but health care is just about dead last on their priority list.

    My doctor prescribed Fentanyl patches, but I'm almost afraid to put one on. It's the lowest dose, 25mg, but I don't want to spend the entire weekend sick as a dog if I have a bad reaction to it. Don't you HATE that, when trying a new med for the first time? Be sick or be in pain? What an awful decision! One we have to deal with all the time. Ah, well, it could be worse.

    Soft hugs,