Frustrated....

A few weeks ago, she woke up popping her arm up and down pretty violently. Her shoulder was jerking up so hard that it was smacking her in the side of the face. After a few hours of this, I put her in the shower to see if the warm water would calm her..

I was standing directly next to the shower curtain when I heard her shoulder pop out of place.

We spent the rest of the day at the hospital. The doctor put her shoulder back into place, put her arm in a sling, and of course changed her meds because she thought that could be the reason her arm was so out of control.

And did I mention that this was the week before we were to leave for Allstar Nationals in Florida??

This week the effects from stopping that medication have kicked in full force. She has been crying A LOT. Crying uncontrollably because she "doesn't like the feelings that are inside" of her. I don't know what that means or how to help her.

Yesterday was so bad that I talked to her doctor several times throughout the day. She screamed and cried hysterically from the time that her eyes opened at 9 am, until she exhausted herself and fell asleep around 2 in the afternoon. She was crying again when she woke up. Admitting her was mentioned, but I really wanted to wait as long as possible before using that option. Instead, the medication that was stopped because of her arm, was restarted. Hopefully that will help start helping her soon.

I have never felt more alone in a situation than I do right now. No one outside of my house understands what my husband and I are going through, and no one could even come close to understanding what my daughter is going through. We don't know how to help her, we don't know how to help ourselves, and we don't know how to deal with the outside disbelief and lack of compassion.

I was able to leave my house with her one day this week. I haven't been able to talk on the phone with anyone other than her doctor because of the screaming in the background. My lack of communication with the outside world is not being handled well by my family and friends. Explaining would be useless, as I have tried. I do not get responses such as "Well, how is she doing?" or "Is she feeling any better today?" or even "What is being done to help her?"

It shocks me that the people that love my daughter seem more concerned with the fact that I haven't called than they do about how she is doing.

How do I make people understand that TS is more than just a few body jerks and squeaks? If that is all it was, I would count her the luckiest child in the world.