Thursday, May 14, 2009
I know that dates on the posting will be the same but I wrote the first blog on Gary as an email. Yesterday was a rough day. Dermatomysitis attacks the skin, muscles, and joints. My thinking, well he came down with the rash and I noticed a little bit of joint pain in the legs but nothing of not walking like the description of the disease says. Since he has and is being treated with all the drugs, the progression should stop. For the first time yesterday, Gary could no go from a laying position to sitting up. He tried 3 different time. Of course I am like what the hell. So I picked him up ever so gently and set him on the floor. I told him come on lets go get a cracker. He proceeded to slowly swing each hip to make his legs go. He was so slow and he mutter ouch ouch ouch each step. Going back to my thinking, I thought we are being treated? With the steroids and antibodies in him why would he continue with any sort of deterioration? Gary cannot lift his leg to complete a step up or down any stairs. He cannot go from a standing position to a sitting position. And vice versa. I told my husband to watch him because once he gets on the ground he is like a turtle that gets turned over on his back. He is stuck. All this is new. Last night in bed he was crying a bit because he was unable to turn himself over from back to tummy without great effort. He has been sweating profusly in his sleep. It breaks my heart! He is soooo cute. I start to freak out and keep reminding myself that God has got this and I have faith. He is alive. I was told by my family to try and not freak out over every little booger but its a coping mechanism for me. Gary is taking his medications really well. We are on a 2 day countdown to his first injection. It will be one on Saturday, every Saturday for the next 6 weeks. My family is so wonderful. I am so lucky. Both my sisters and parents spared me their reactions of worry and kept calm which really helps. God created my sisters to fit me. They don't add extra stress, they just take it away. Which I really need that. Always and forever I will be grateful for such wonderful gifts. My parents brought dinner in 2 nights in a row, and my friend Deanna brought it in last night. So nice not having to worry about that and gives me more time to spend with Elexis and McGuire. This is hard on them, especially Elexis. I am getting worried about her. Her behavior is constant crying, and overall just not happy. I have not seen her smile since last Thursday. I am doing my best to keep attention where attention is due and be loving. It is frustrating sometimes though when she insist things go her way or else.