You talking to me?

Try not to act too surprised when I reveal the current opinion of my doctors. It is the consensus of my many specialists that I might be hard headed. Seriously! It seems that I have been in an ever present state of denial since my initial onset. I am an optimist, and kept thinking that I belonged in tights with a cape. While the image in your head must be precious...it is apparently not accurate. I have been waiting for the grand return of my former self, but she will remain M.I.A. for a little while longer. I was under the impression that I needed to rebuild my stamina by pushing through the fatigue. But the fatigue was apparently by threshold.

I met with my doctor for the first time since my relapse two weeks ago. I have made a great recovery, but with every relapse comes high risk. Preventing another relapse is top priority. We have the choices of switching to chemotherapy, re-starting the steroids, or giving my current medicine the chance to work. We have opted for the third choice. In order for this to work, I am going to have to reduce the stress in my life. Stress and fatigue are the biggest triggers.

There are certain things in life that cannot be prevented. Death and illness of your loved ones is one of them. Being a mother is something that I wouldn't change if my life depended on it. That leaves work. My doctors feel that it will be best if I do not work and concentrate on resting my body and mind so that we can actually achieve full remission. I am waiting on some lab results to see if we need to increase the immune suppressants.

I will keep all of you up to date as things change. Have a very wonderful weekend. There is a big 5K in the Hill Country in the morning that all should attend!

...and we are back!

I know that it has been a long time since I have given an update. There are many reasons...some I even think are quite good! Anyway, there is a lot to say, so here we go:

Many of you know that over the Christmas break, my sweet little girl started having increased trouble with her vision. They put her through many tests. The ultimate decision is that she has severe migraines 24/7. She has had them so long, she only notices the strong ones. These are usually paired with a blood nose and charming disposition!

As most are aware, I started my steroid stage down last fall. Each stage down became more difficult, but by mid January, I was steroid free. I even managed to do this without becoming a vegetable or my brain turning to scrambled eggs! Haha...both food analogies. Gotta admit that is funny!

I was able to return to exercise with the goal of losing the 30lbs the steroids put on me. Good thing too with swimsuit season approaching! Now that is funny. Everyone knows I don't swim! But my butt does have to fit into a yellow ducky inter tube!

Unfortunately, last week was filled with stress and disappointment. I learned that a friend I went to school with who had a progressive neurological disease past away. My duties at work have been increasing for some time now. And then I finished the week off with a girls weekend. I apparently pushed past my threshold. My father suggested I found a bad worm in the tequila. heehee Anyway, this resulted in a relapse Sunday night.

This one is different. I have not had an episode without the steroids, but while on the immune suppressants. I started feeling dizzy and a little nauseous. My body started to hurt all over. The convulsions started that night, but would stop after about 10 or 15 mins of laying down. They would re-start every time I stood up again. My doctors and I agree that I can't go back on the steroids, so they ordered bedrest while we watch the symptoms. The convulsions tapered off after two days, but I am still having the muscle spasms and twitching. My blood pressure dropped for a while, and my blood sugars began to rise. Headaches and dizzy continue.

You will all be glad to know that we have not lost our sense of humor. John was fussing at the kids out of his frustration. When I called him on it, he turned around and shouted, "hey...you just shut-up and shake!" We both looked surprised and started laughing. He brought me dinner in bed the second night and asked me to take a bite. As I sat up, I began to convulse and shake. He smirked and said, "Is that a no, or a maybe? I can't tell!" We have decided that laughing is the only thing we can do right now. That and pray.

I am supposed to stay on bedrest until my doctor's appointment on the 28th. It is looking like they will not let me return to my regular lifestyle though. My rheumatologist said that if this drug didn't work, than we would try the full strength chemo. Just because I have relapsed, I am not ready to say the medicine is not working. I had been doing great. I think if I allow my body to rest, the medicine will continue to work. Pray with me that they see it the same way and that we don't experience any progression. We were told to expect permanent damage the possibility of stroke, coma, or death with each relapse. I am proud to say that I am not drooling, I'm conscious, and I still have a pulse! Thank you, thank you. I will be here all night...after all, I'm on bedrest. Where can I go!