Sunday, September 14, 2014

September 2014 Update

I am halfway through another month, and every day is a roller coaster of ups and downs, highs and lows. I feel I am getting better slowly, but I also think the worst and worry and wonder if it will wear off again like last time, if it is only from the steroid IVs.

I pray to God that the Quinacrine will do it's job and send me into remission like the Plaquenil always did before. My doctor said he will not give up on me, but his Neurologist colleague seems like she has. She wanted me to get a brain biopsy, a crazy angiogram procedure, and also see another Neurologist that I saw in the past, that did not help me at all. It is so frustrating because I don't look sick, and when I am clear, I don't think you can even tell that I am sick. And, now my blood work is clean again, so they don't want to give me any stronger medication. Even though they gave me Imuran before - but that hurt my chest so bad. I don't want to get sicker or die from some crazy medication.. but I am willing to take some risks to get my health and mind and life back.

I feel I took so many things for granted.. and all to work out really hard and be some toned tan fitness girl. I would rather be anything now. I don't consider myself vain at all, I am probably more insecure - like I think a lot of women are. So, I got implants in 2006 - thinking that other women did it, why shouldn't I? Then, in 2009, I worked out really hard because I wanted to challenge myself. Learned my lesson. But I also took an antibiotic. So, I think I blamed it on that. Then in 2013.. Almost a year ago.. I risked it all again. My relationship was under stress, and I wanted to do something for me. Although, looking back, I also wanted him to desire me more - hence the working out hard. He even paid for my fitness plan and said he would give me the money for it, if I didn't quit. So, I completed the 12 weeks and it was downhill from there.

I try to be positive and I am lucky I have my therapists and parents and friends that love me and won't let me give up. Or I think I would have, a long time ago. I just want to be well and enjoy life again - start over, with a new perspective and plan.

Feels good to be able to type today and I drove around some - nights are a little easier, but day time I am anxious and the fog and confusion is up and down, so it causes a lot of depression and stress and is tiring. When it hits me, my brain works against me and I compare my state of mind to a previous time and try to analyze things, or predict the future. I know I can't do any of these things, but I think it is a symptom and I am trying to escape it? I am not like that when I am healthy.

From what I have learned along the way, the best I can do is try to know in my heart that I will be ok, look for the positives when I am having a hard time, try to stay calm, and try to stay in the moment. Even if I don't like that moment or it is hard, I have to try to find a positive to get me out of the negative thinking rut.

I am working on it.