Hard day

I will make this as brief as possible. This week has been very hard due to an increase in my symptoms. The headaches and convulsions are pretty regular now. Met with a new Neurologist today. He reviewed my file and isn't comfortable with the Encephalopathy diagnoses. The convulsions got worse when I had to preform physical and memory tests at the same time. This is classic in epileptic convulsions, but he said they are too severe to have not shown up on my MRI or the two EEGs I had done last year. He is ordering an anti-convulsing medication, but this is expected to make some other symptoms worse. When I have two people talking or there is too much background noise, my brain will stop interpreting what is being said. The light is on...but no one is home. This will get worse. Dr. Restrepo is going to review all of my labs from the Endocrinologist and the Rheumatologist from the last year and then decide what he wants to do. I will go back on Oct. 11th

When the Mayo Clinic called me this afternoon to discuss the new symptoms, I was informed that the Doctor who has been following me is no longer there. The head of the Department called me and told me that since I was doing so well when I saw him, he now cannot say one way or the other about my diagnosis. He told me that I need to follow up with Restrepo and let him decide, or come off all of my medication and return to the Mayo Clinic while highly symptomatic. There is no way John and I could afford another trip to the Mayo, and coming off my medication is scary. If it is Encephalopathy, that could result in a coma, stroke, or death. If it is not encephalopathy, we do not know what could happen.

claiming victory

Hello sweet friends! It has been a very busy couple of weeks, so I will try to fill you in, catch you up, without bogging you down. I think I verbally regurgitated all over my last post.

For the last month, I have been experiencing an increase in my neurological deficits. When I am startled or experience strong emotions, my body is under such stress that the brain isn't able to send messages through the nerves correctly. I experience sudden loss of strength, motor skills, and begin to have convulsions. It only takes about an hour for my body to recover if I am able to lady down in a cool, quiet place with limited stimulation. Just driving in the rain a couple of weeks ago was enough to trigger an episode while at my rheumatologists office. They ran blood work and we were waiting for results.

Within 24 hours of my last post where I boasted about my ability to remain healthy while on my immune suppressants, I developed a fever. I must have come down with the virus my daughter had the week before. I had a sore throat and began to cough. I was ordered to stop taking the immune suppressants and began taking an antibiotic with hopes of preventing a secondary infection (sinus infection or pneumonia). We were all very concerned because I would not be taking any medication for my auto-immune disease. After a great deal of prayer and a few nervous days, the fever broke and I was able to resume my medication. I experienced few complications from being of the suppressants. This gives me hope that one day I will be able to quit taking the suppressants permanently. I feel it is important to celebrate the little miracles like that we are given and not spend so much time trying to see what the future is going to hold.

I met with my endocrinologist today. She is my biggest cheerleader. She told me that she is happy to see I have lost the weight from the steroids. I told her I had lost more hair than weight, but it has allowed my to wear some great hats! We looked at my recent labs and compared them to the thousands of others I have had in the past. We are going to increase my thyroid hormone and need to begin taking B-12. My low B-12 could explain some of the neurological progression. We are also hoping it will improve my energy level. On the positive side, she told my that she is not ready to give up hope that we can turn the progression around. She insists that she will not accept this as a progressive disease and will not accept death as my ultimate fate. "There just are not enough cases to write you off yet and say that is the way it has to be," she demanded. "You are too young and I think you are going to surprise them," she added. She agrees that I am on a down hill slide, but thinks we can reverse this...but made a suggestion I refused. "You may have to go back on the steroids for a couple of months to turn this around," she said. I told her I am not ready to do that, and do not plan to be ready for that as long as I am the one making the decisions. She wants me to be hyper-vigilant in recognizing the signs of stress or fatigue and rest as much as possible. I will meet with a new Neurologist on Sept. 30 to see if he has any other suggestions.

Ever play darts?

My weather bug just popped up to tell me that it is raining! As though I wasn't going to be able to figure that one out on my own. For those who have never been to my house, one side of the ranch is lined with the Spring Branch Creek. The Guadalupe River is about a half mile from the other side of our property. There is a dry creek bed that runs through the center of the ranch and sounds like the Colorado River this afternoon. Many of the weekend tubers throw their cans out on the side of the road, but when it rains, they wash up on my driveway. If you drove by and thought you missed one heck of a party...don't feel bad...we did too!


"Ever play darts with a moving target?" I asked the nurse this morning. I was trying to remove the concerned look from her face. I have found that needles hurt less when the person giving it is in a good mood. It was just my annual Flu Shot. My Rheumatologist makes sure I do not miss any of my prevention. "You have been on the Cell-Cept for a year now Kim, and I have to say that I am very impressed with how well you have done," he told me. He expressed his amazement with the fact that I made it a year without an infection or significant illness. My friends and family who have known me most of my life know that I have never made it more than a few months without getting strep, a sinus infection, or upper respiratory infection. This is why we were very concerned last year when we fully suppressed my immune system. I have two school age children in my house! "This was the first year in my life I have not gotten sick," I explained to my doctor. "That is because you are the luckiest woman alive," he added. Then we both realized how ridiculous that comment was, and we both began to laugh. I, however, know that I have more than luck on my side!


Well, loved ones...we are back on the roller coaster again. "Look Mom...no hands!" My mother has never enjoyed roller coasters, and I know she would love to get off of this ride with me. A week ago, I went and visited some old friends for a couple of hours, then we went to a birthday party for one of the cutest little girls I know. We were home early, but I wasn't feeling very well. My head started to hurt and the pain behind my right eye was growing stronger. My scalp on the opposite side began to sting. This is my sign that I have inflammation in my brain. The pain kept growing and soon I was throwing up. Well...I actually had surgery a few years ago that prevents me from throwing up, but I still go through the motions. My body was starting to convulse but it was milder than I have experienced in the past. I crawled into bed with a giant icepack on my head and tried to sleep. To be honest, I was pretty scared and not sure how this was going to end. I would have gone to the hospital, but my doctors have made it clear that they will start high dose steroid therapy when admitted. I wasn't ready for that yet.

I woke up the next morning and felt a little better. The headache was not gone, but it was better. Over the following days, the pain and pressure shifted, as did the symptoms. My memory is sketchy and it is taking me longer to get out thoughts. I walked into the doctor's office today and exchanged pleasantries. "How are you? Good...and you? Good..." I went over the symptoms I am having. "So you really are not doing that well," he clarified. You see, I hate sounding like I am complaining or making people worry...so it is usually easier to say..."I am fine!" Sitting on the exam table, it was clear that I was not fine. "You are jerking quite a bit aren't you," he asked. "No...I have this awesome Reggae song in my head and I can't stop dancing," I replied. We both laughed again at what appeared to be the second dumbest comment I had heard that day. He asked me to complete a couple of tasks. I passed the right side tasks, but bombed the left side.

Here is the game plan, we are going to bring in a new Neurologist who is known for working on tough cases and can think outside the box. "He may tell you that the Mayo Clinic is the best...and if they say there is nothing that can be done, then that's it...but he may pull out a bag of tricks," he said. They took seven vials of blood, so hopefully they will give us a reason for this decline. It took three veins...but we got it! The kids are back in school, so I am able to take mid-day naps. That seems to help.

One last thing: please pray for my doctor, Everett Allen. He had surgery on his shoulder and is a little frustrated that he is not 100%. " I get frustrated, but then I come to work everyday and it is put into perspective," he explained. "Perspective doesn't mean you don't deserve compassion," I told him.