Christmas blessing

Over the last three weeks, I have met with all three of my specialists. It is almost overwhelming what we have learned. I have been blessed to have three of the top specialists in the state working as a team. They have put their pride aside and are truly working for the benefit of the patient. This reminds me of the Mayo clinic.

Two months ago, I was back in the hospital after four straight days of convulsions. Normally, rest and rehydration will do the trick, but not this time. In two short weeks, I went from an occasional tremor to full bodied convulsions. With HE, my immune system is attacking the neurons in the brain. This creates abnormal signals to be sent through the nerves which control every part of my body. This effects muscles and organs alike. This may sound dorky, but imagine a river or spring. The water begins to flow in one certain way, and it is difficult to stop. The longer the pattern exists, the more difficult to redirect. Prior to starting my Cell-Cept (immune-suppressant), inflammation would set in and then signals would have trouble being sent at all, similar to a stroke. I have been blessed that I have not had an episode such as that since August of '09. While in the hospital, my new neurologist explained that he had treated 22 cases while working at the Mayo clinic, and 20 cases were progressive. He explained that returning to steroid treatment would be too dangerous for me as I had such a bad experience. We agreed that since there is not a cure for this disease, that we would treat the symptoms and work towards living a normal life.

I began taking clonazepam. This is useful in treating some seizures. It is in the class of bezodiazpines, which slow the abnormal electrical activity in the brain. We began with a very mild dose and I showed an amazing improvement. After a month, my body had adjusted to the dose and I began to have some seizure activity again. We doubled the dose, but that slowed the activity to the point I was stoned or asleep most of the time. The last two weeks were a blur. We will take a half step back, allow my body to adjust, and then return to this dose after the holidays.

While I have not made it to full remission since the initial diagnoses (symptom free without medication), I am in partial remission. The only symptoms I currently have are from the medication. Here is the funny part, the side effects are dizziness, fatigue, unsteadiness, poor coordination, muscle and joint pain, and difficulty thinking and remembering...all of which are also symptoms of my illness. Ironic. But my doctor was so impressed with how well I am doing, he is encouraging me to restart exercising and does not want to see me until April. Out of my three specialists, I have never been allowed to go more than two months between appointments, so this is a small victory.

Here is where I need your prayers: We need for my health to maintain so that our medical bills decrease long enough for my husband to get his ankle replacement, and for me to be healthy enough to care for him. I also need prayers for my children. Both are struggling with my mortality, but little Logan is having a much harder time. He is receiving counseling at the school and his teachers are trying to help, but his grades are suffering due to his inability to concentrate. We have shielded them from so many of the details, but we couldn't hide the convulsions when they continued for so long. "When I am at school, all I think about is you being sick and wanting to be with you," he finally told be. He has tried to be strong for everyone and ended up letting himself fall to pieces...much like his mom.

I pray that all of you reading this will have an amazing Christmas and will be able to spend it with the ones you love. For those reading this blog who have been diagnosed or know someone who has, I would love to talk with you personally. You should be able to access my email from my profile if you register with blogger. If you have trouble, let me know.

P.S. Yes I realize that I used the wrong vein in my last post! haha Maybe it is because I just had labwork done, but my vanity has been kept in check by my mistake.

Honesty...

I am publishing some photos now only because I am finally on the other side. Most of you know that when I was initially diagnosed with HE, they used high dose steroids to stop the convulsions, then I remained on high dose steroids, prednisone to be exact, as a form of treatment. When most people are exposed to that high level for a prolonged period of time, the body begins to change. My face rounded out (moon face as it was referred), my pancreas shut down (creating diabetes), my body was confused and thought I was starving so it began to store every calorie consumed. It also increased my appetite (this made me gain 30 pounds in 4 months.) I am only 5 feet tall, so this made me square. It would have been more if I wasn't on a liquid diet for part of the time and exercising every chance I could. I even developed a lump on the back of my neck that was referred to as a Buffalo hump! Seriously! Of course there were other problems such as bleaching of the bones, bone and muscle aches, insomnia, not to mention that it made me certifiably crazy!!!!

After a trip to the Mayo and some experimentation by my doctors, I was able to come completely off the steroids. Eighteen months later, I am finally at the weight I should be. I have to admit that the weight was the worst part. Please do not think of me as vein, but I realized how much of my identity was wrapped up in the way that I looked. I grew up in a family where every member struggled with their weight and were constantly dieting. I was a competitive gymnast and struggled to consume enough calories. I had to eat like a hobbit while the rest of my family tried one diet after another. We celebrated and mourned with food.

As a teenager, when I felt my life was spinning out of control, I learned that food and my weight were the only things that I had control over. Years later, God showed his amazing sense of humor. As though becoming the largest pregnant human on the planet every time I conceived was not enough (Oh, yes...strangers would walk up and tell me that!), but when I was at my weakest and in my greatest time of need, I lost my one coping mechanism. People definitely treated me differently. Those that know me didn't understand if they should point it out or ignore the difference. It even felt as though strangers treated me differently. The change was so fast that I didn't recognize the girl in the mirror and I certainly didn't feel like myself. I felt that I had lost me. That left me with turning to the Lord. Sure, that should have been my first choice, but I am known for doing things the hard way. In fact, I became angry with God first and rebelled. Thankfully, he is a faithful and patient God.

I often get spiritual amnesia though and forget that I need God when my life is peaceful, so he keeps sending me reminders of that time. You see, my condition is progressive and we are constantly having to adjust my medication to deal with new or stronger symptoms. My energy level ebbs and flows. When people in my community see me out, it is because I am having a good day. I appear brighter and the weight is gone, so I am frequently asked if I am better now. "You look better," they remind me while answering their own question. I smile and tell them that I am doing well that day. But I can almost hear God chuckle as I walk away, because we both know that I would not be here or have good days if it were not for his presence.

(in order: October '09, Hurst Wedding '09 (Fall), Easter '10(Spring), Beyer Wedding '10 (Summer), September '10.