Anytime now...

I'm honestly waiting desperately for a break from all of the chaos that is my life. I am having a difficult time and I don't know what to do any more. I'm tired of trying to be strong all the time and not having any answers. Living with this disease is by far the most difficult thing I've ever had to do.

On Monday, I took my first final in the morning. I had lunch and I was getting very overwhelmed by all of the noise and sensory stimulation that I needed to get away. Since sensory over stimulation is something I've dealt with before, I decided the best thing to do would be to go upstairs and get away from it. So, I headed up the stairs by my former instructors, Brenda and Donna's offices. Then I started to feel worse. I knew I was going to have a seizure, but at the same time I thought I would be able to avoid it if I just tried to take some deep breaths and destress a little. I told Brenda that I wasn't feeling right. She asked me if I wanted to lie down in the lab, I told her I thought I would just stay sitting there for a while. I figured that if I was going to have a seizure, the worst possible place for me was alone. Brenda went to go down the hall and I was staring. She tried to call my name but I did not respond. She yelled for Donna and I had already started the full-on tonic-clonic seizure. I remember nothing of this, mind you. Brenda described it to me so I could tell the doctor when I saw them today. Anyway, she knocked on Karen's (my current instructor) door and I guess somewhere in there Donna showed up. My seizure continued for five minutes.

To say that I'm grateful for my teachers is an understatement. They all did a wonderful job in helping me that day. Brenda, Donna, and Diane were exceptionally helpful. Brenda and Donna, from what my friend Carissa said, were holding my hands the whole time. In fact, they were the first faces I saw when I came around. Diane sat with me in the Emergency Room until my grandparents arrived shortly before my discharge. They are all an exceptional group of caring women and I'm very blessed to have such wonderful people in my life. EMS was called and I was transferred to the hospital. There, they gave me 1000 mL of normal saline and did some lab work. Fortunately, that all came out normal. They told me that I should not drive until I saw a doctor. So, again we are doing that song and dance. Sigh.

I saw a Physician Assistant today. She was excellent, but I really want to transfer my care to somewhere that isn't Mayo. I'm tired of people not taking things with me seriously. I don't want to have these seizures. I'm tired, and I need answers and some relief. But I don't know what to do or where to go anymore. Things have become so overwhelming that I feel like I'm literally out of options. That is not a good way to feel. I'm trying to be positive and fight this with everything I have but to put it simply, there isn't much left right now. I don't know if I have anything left right now. I miss the person I used to be. I want her back. I don't want to be this person any more. I don't want to allow my disease to kill me yet. I'm pleading with God that I get the answers I've been so desperately seeking for the past 10-12 years. So far nothing has come of it, but I can't give up now. I have too much that I want to do.

My heart is heavy. My burdens are too. I need to give them to God. I simply can't do this on my own any more. I am so thankful for the friends and family I have in my corner who have loved and supported me on this long journey. I need them now more than ever.

I am also in need of thoughts and prayers. If you're reading this, that is something you can do. I wouldn't wish any of this on my worst enemy.