The floodgates crashed open!

Discussion in 'The Watercooler' started by susiestar, Nov 8, 2009.

  1. susiestar

    susiestar Roll With It

    First, let me say that my home/town/area is NOT flooded. The floodgates I referred to are in Jessie.

    We ALL had a pretty yuck day. Not sick, just not feeling great.

    Jessie has developed a yen to adjust the thermostat. My room and thank you's room get 10+ degrees hotter than the rest of the house. At midnight I discovered that she set the thermostat on a/c, fan set to "on" and left it there for about 2 hours. (In the heat of the afternoon we sometimes run it for 20 minutes because it has been warmer than usual.)

    When she asked why I was changing it, I was kind of abrupt. Not mean but not super friendly. She started to get hostile and I said that we both need to sleep now.

    A few minutes later she came in to get some muscle rub applied to her back. She started crying and sobbing. She is tired of hurting. She is tired of not sleeping. She is tired of the docss treating her like she is doing this on purpose.

    She even started hyperventilating.

    She just sobbed and sobbed and sobbed. It ripped my heart out.

    She is feeling guilty because she wishes I could take all her pain and handle it myself. Seems like a normal thing for a kid to feel, in my opinion. At least one in her situation.

    She also finally admitted that when she wakes up in pain it seems like it is Wiz beating her all over again. So she wakes in a panic.

    After 2 hours of crying and me rubbing all the cramped muscles as best I can, she is settled to watch a video and fall asleep.

    I am scared. How much more can she go through without a major nervous breakdown? I am glad she seems to like the therapist. Hopefully he will help.

    Thank you to everyone here who lets me vent and verbally worry about Jessie. I feel so out of my depths, impotent to help her.

    Surely there is a shop somewhere that you can take a child to and have them all fixed and ready to go in just a few hours? (maybe they can even install on/off switches and volume control too?)

    We are booked with the endocrinologist in 2 weeks and the therapist the same. Not sure when we will hear from the pain clinic. I plan to fax my pain doctor and ask him if he would consider treating her, or recommend us to someone who can help.

    So there are more steps to take. But it is SO HARD to know she hurts and not be able to make it go away.

    Hugs to everyone.
  2. timer lady

    timer lady Queen of Hearts

    Susie, I'm glad that J is sharing her feelings - willing to talk to you. Not surprised that the pain is bringing back significant memories.

    Please consider/remember that, in many ways, this is like treating a difficult child. The wondering, waiting what is next? So try to pace yourself. Unless something major happens overnight you have 2 weeks to wait.

    You will be a wreck if you don't find a way to relax & find alone time.

    Unless you want J to become "crippled" by this she has to start learning basic fatigue/pain management. Deep breathing during the worst of the pain, simple meditation, manage her movements (i.e. gather all that needs to go to her room & make one trip versus several). If she can tolerate a walk & it doesn't worsen her pain that should happen. Basic stretches under warm water during her shower. However, unless told otherwise my MD the no pain, no gain mantra is out.

    I'm sharing what I'm learning to manage my fatigue/pain to a lesser extent for J. Susie, if I'm off base in sharing this with you please forgive me. I'm learning a great deal in PT & Occupational Therapist (OT) about pain/fatigue management. Given J's level of pain I'd thought I'd share some more age appropriate things with you.
  3. DaisyFace

    DaisyFace Love me...Love me not


    I am so sorry that your daughter is dealing with this--it's so unfair!!

    And I know that you have been getting the run-around in your town. Is there a pain specialist somewhere that you could write to about the situation? Sometimes, even retired doctors will offer advice on a case if it peaks their interest....

    It can't hurt to try.