Friday, April 3, 2009

Where Do I Start???

Wow. Not sure even where to start. I could start by cussing, what where would that get me? I am SO frustrated, the tears are coming very easy. I feel we are back to square 1, but this time it's worse and seems like a deeper hole. Frustration is not a big enough word to cover all my feelings. Instead of Steff folding backward like when this all started with these episodes, she now twists into horrible contorted positions. The bending backward was odd to some, but I felt that with her doing gymnastics, backbends, and the scorpion in the builds, at least her body was used to that position. Her muscles certainly had 'been there'. This morning she woke up crying b/c her entire body hurt all over. The episode last night was killing me. I swear her left hip was touching her right shoulder. She was so twisted up that it was hard to tell where anything was. It also would NOT let up. The old ones would spasm for a while, release, then spasm again, many times. The new ones will not release at all. She is really screaming in pain now. The 'release' was giving her time to breathe before it started up again. The new ones also involve her neck, shoulders and head. I know her neck HAS to be killing her. All that information and I didn't even go "there" with her not being able to breathe. I'm not either. So..I'm not sure why it all changed, or why it hasn't stopped. I know we are all sick of it. She has an appointment with an adult neur on the 17th. He specializes in movement disorders. Two weeks is a long time to keep this up. Her heart is breaking and so is mine.
I did get the hair results. Interesting to say the least. I have been reading it, believe it and would like to get it started, yesterday. BUT I have to get Dave and Steff on board to make it work. He seems like he will jump on, but she has her doubts and refuses to keep taking more meds. She has had quite the personality change through this second round. The papers from the hair explain the process that she is going through and it fits. She is in sympathetic something> I'm not all informed yet. LOL but those of you that are familiar will get it. I will buy the minerals and vitamins, what can it hurt? I understood she will urinate out or pass through her blood what she doesn't need. I'll put them in her fruit smoothie I make each morning if that's what it takes. I just want her better. I know you all get it. Whatever it takes.
On yet another note. My amazing niece in KY is a computer rat. She has located a ped neu in KS that is working with girls that are having adverse effects from the Gardasil. She called him, spoke with his nurse. He doesn't want us to drag Steff there, he wants to review her info then work through her Dr. here. This is encouragaing to me. It seems like he has her best interest in mind. I would drag her there> if I knew it would work! Anyway, she's working on that for me. I have to send her some more info. Dr. P's nurse seems to think he will jump on board. Doesn't matter, if he chooses not to, someone else will. I went head to head with his other nurse this AM. She STILL thinks she is suppressing something. UGH!!!! I asked her HOW many pschys is it going to take for you to believe one?? She said if Dr. Hussien says she's fine, she'll let it go. Okay, stay with me. On that same note, in the paperwork from the hair ~ it states if the person is in the sympathetic state, they won't process "hurt" or "disappointment" fully. They hold onto some of it, b/c their imbalance won't let them process it properly. So, maybe there is a connection. I know I am rambling and mixing this all together. Sorry. I am FULL. I am trying hard to understand it and praying that I'm taking her in the right direction. It makes sense. I cannot say that enough. That Dr. works on the neotransmitters and that stuff. Sound smart....don't I?? HA> I know, I know, I still have a lot to learn on that front, but I'm certainly willing to do that.
I'm heading to shower, hoping for that peaceful feeling I experienced in the beginning, then back to my job. Seems like a long time since Cancun. It hasn't even been a week. Thanks so much for all the prayers and words of encouragement. Although I don't answer each email or phone call. I get them, they make me smile and sometimes cry. I appreciate all the love and concern coming our way. God bless each of you. Keep us in your prayers, we aren't there yet.
oh yeah, I watched The Today Show today. They had a lady with Dystonia on there. Made Dave cry. I, on the other hand, refuse to believe it's dystonia. I failed to mention. That's the new name they are putting on it, this time. Go figure. Dr. P already said it's not dystonia, it's too severe and she wouldn't have them in her sleep. I'm trying like h.... to roll with it. Just figure it out and get her back to 'my girl' that's what I have to say about it. I'm outa here.

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