In need of guidance

Okay prayer warriors, I have a favor to ask of you. This time it is not for an urgent situation, rather a request for prayerful advice. I have another tough decision to make.

Let me catch you up on the latest situation. After a month of decline in my health status, my endocrinologist sent my convulsing booty back to the hospital. As usual, there were a laundry list of situations and conversations that I found completely hysterical, but probably would not be appropriate to share with all of my church friends. Come on, y'all know me...I can find humor in just about every situation...and often share my thoughts out loud...when they probably should be filtered. I blame it on the pills and the scrambled brains. Admit it, you wish you had an excuse!

My new Neurologist paid me a visit there, ran lots of tests, put me on new meds, and sent me home. I have to tell you, I feel better than I have in almost two years. From the time I met Dr. Restrepo, he has been a skeptic about my rare diagnoses and was strongly against the usual treatment for the Encephalopathy.

We had a follow up visit yesterday and he was amazed at how well I was doing. In fact, he took one look at me and in his saucy accent asked, "What happened to you? You look amazing!" That is when my husband answered him, "Good drugs!" The very serious doctor spun around and shook his hand at John. "No...no! I am Colombian! We say medication," he corrected. Oh yeah, Doc has a sense of humor! Game on! "That's right...all drugs are good to Colombians," I added. He couldn't help but appreciate my sense of humor. What can I say? I'm FUNNY!

After running the tests and reviewing my file, Dr. Restrepo has conceded to accept Hashimoto's Encephalopathy as my diagnosis. "I'm okay if you want to label it something else," I told him. Again he waived his hand and said, "There's nothing else." He studied about 22 cases of this while he trained at the Mayo Clinic and 20 of the cases were highly progressive. The treatment was always high dose steroids. He said there is not a safe therapeutic dose for me with my history. If it is going to be progressive no matter what, then why expose me to ulcers, infections, diabetes, osteoporosis, bone replacement therapy, and more. We can slow the progression with the immune suppressants and take anti convulsants, thyroid hormone, and B-12 to treat the symptoms. This is a small victory for me! Whoo-hoo!

We had originally planned on switching me to a milder medication at the follow up visit, but now have decided to leave me be. "You are doing too well and I do not want to mess this up by switching anything," I was told. I asked about biopsies that I was suppose to have last week after a test showed abnormal cells. Dr. Restrepo advised me to postpone the procedure since I am highly susceptible to infection and stress or trauma could aggravate my now stable condition. I was soooo okay with this, as the biopsies are done in the office without anesthesia.

Okay warriors, this is where I need some prayerful input...not just medical. When I called my OB's office today to tell her that I would not be rescheduling the biopsy, she put me on hold while she reviewed my test results. She returned to the phone and told me that she strongly advises that I have the biopsies done on an ASAP basis. The type cells found are very concerning, and since the results were misplaced for almost 5 months, she does not feel I should wait any longer. My OB is suppose to call me with his recommendation about the safest way to do this. I am not emotionally ready to have another surgery, put my family through the stress, or take on anymore financial burden. Please pray with me that my doctors and I will make the best decision, and I covet your advice. God bless sweet friends.

Back in the hospital

If you have been following the last couple of weeks, you know that I have had a decline in my health. The tremors and convulsions were coming more often, and my heart began to flutter strong enough that it took my breath away.

I met a new neurologist last week and he was skeptical of my diagnosis and truly against the common treatment for my illness. I was uncomfortable with the way that he just wanted to take a few weeks to review my charts and previous labs, while I felt a progression occurring. I scheduled a follow-up appointment with my endocrinologist to get her feedback on the matter.

Upon walking into her office, she immediately pointed out that there was a significant decline in my condition from our visit just two weeks prior. She was not comfortable allowing my condition to decrease any further, so she admitted me to Stone Oak Methodist. This has to be the quietest hospital I have ever been.

We performed an EEG, EKG, MRI and many labs. Many of the labs will not be back for a couple of weeks. The other tests showed only minor changes. Our new neurologist came in late Monday night and explained that he had been talking with my endocrinologist, rheumotologist, and other neurologist. While he is still not convinced it is Encephalopathy, he has not been able to find any other disease that matches my symptoms. He has decided to treat me for Encephalopathy, but not follow the typical treatment plan.

"Steroids have bleached your bones, began to destroy the bones in your hip, gave you diabetes, and will eventually re-open your stomach ulcers," said Restrepo in an encouraging manner. "I studied at the Mayo and 20 out of 22 cases I saw were progressive. There is not a therapeutic dose of steroids that would work. You will be on very high levels for the rest of your life. You will probably die from the side effects before the disease."

So we have come up with another plan. Instead of treating what we feel is causing the disease, we are going to use less toxic meds to treat the symptoms. This should stop the convulsions and possibly allow me to return to my usual lifestyle, while they continue to look for a cause and cure. I am not driving for a couple of weeks, but we will change meds in a couple of weeks and see if it is possible. That is when we will learn if the symptoms will return.

I also received a phone call from my OB last Friday to tell me that they found abnormal cells and want to do biopsies. However, at this point, we will wait for me to be more stable and my immune system to be stronger.

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.

Ugly duckling

Sweet friends, it has been a while since I have updated this blog. Please know that it is because there is not much to update you on from the medical stand point. I had labs drawn a few weeks ago and did not get the emergency call to change my meds as with past lab drawls. My doctor and I decided that we would leave well enough alone unless there was a drastic change...so no news is good news. I do however have a few things that I want to share with you.

My oldest child, Bradie, will be starting 6th grade this year. She is beautiful and strong and not nearly as stressed out as her mother is at this point. I keep thinking about all of the ways I want to protect her. I think about the life lessons I want her to have before she walks through the doors. You know the lessons that you learn from living life, falling down, getting hurt, but then dust yourself of at the end as a greater person. I want her to have the knowledge from my experiences without having to get the bruises and scars herself.

Some of you have known me since I was a little girl, but some of you, I have not had the blessing of knowing that long. What most of you do not know is that from the time I was that little girl, I have felt like the ugly duckling waiting for her swan debut. Maybe it was the fact that as a gymnast I was a foot shorter than everyone, had that amazing Mary Lou Retan haircut, or just something about the way that I identified myself. At Bradie's age, I had one girl friend, Patty who earned her stripes as an amazing friend. Sixth grade was when I met another one of my best friends in the world...Doug. It started as a love-hate relationship, but I wouldn't trade him for the world.

I spent two years at Marshall with some of the most amazing humans on the planet. There was a group of guys that adopted me and let me tag-a-long. They were like big brothers...times four or five. Ryan, Scott, Mike...y'all were amazing and I often wish that I had been able to drag you around through the harder times in my life. You were like guardian angels...and you didn't even know it.

I moved out to Smithson Valley and the spokes came off the wheels. I had my heart broken and lost who I was for a while, but there were still a few of you that survived those years with me. There was a group of brothers, the McElroys, who tried their hardest to take care of me...but I was a stubborn one. I wish I had listened to so many of their warnings. I flip through the year book and get nostalgic like people do when they get sick, and so many of those faces have been lost. Maybe that is why it is so important for me to know that wrongs have been made right.

Over the last year, I have often found myself feeling like that ugly duckling again. My hair is falling out and I had gained so much weight from the steroids. My body and my heart was a mess...and that doesn't even include the scrambled brains. I often have thought about my final days when I turn into a swan and pray that it has been enough. What is worse than not being enough is if I have not made a positive impact. I think that is why we are all here. So this is my Oprah speech...lets all go out and make a difference. Make a difference at home, work, or in your community. Drive friendly, help a neighbor, say hello to a stranger...just don't take candy! Tell those who have made an impact on you how much you appreciate them. Tell those you have wronged that you are sorry, and even bigger, forgive those who have hurt you. Go...Go...Go! The clock is ticking!

What a difference a year makes!

This time last year, I was laying in the hospital with a killer headache. I had spent the night fighting convulsions. I looked like a pin cushion and we were waiting for the doctors to come to an agreement. You see, I had been sitting in a neurologists office the day before because I insisted to my endocrinologist that I was struggling with my speech and my hands had begun to tremble. Strings were pulled and I was sitting in the waiting room of the neurologist's office, but had just been told that I probably would not get to meet with him. They would run tests, but he would probably be too busy to see me. Have you ever been so cold that despite being able to keep your body from shivering, you can still feel your guts shaking inside? That is how it started with me, only I wasn't cold. The shivering worked its way to the rest of my body until I resembled someone with advanced Parkinson's. They call these myoclonic jerks. Two hours later, the woman who ran my EEG on my brain was running down the hall to insist that I be seen. With one look at me and a couple of questions, he was convinced. He had just spent the last five years studying a very rare disease that most doctors have only read about in books. Twenty four hours later, every other major disease had been ruled out, leaving no other choice but to accept the diagnosis of Hashimoto's Encephalopathy.

This time last year, we were experiencing one of the worst droughts since the dust bowl, and we had seen more than 30 straight days over 100 degrees. I awoke this morning to the sound of rain. I am sitting sipping my coffee by the window where I see once chard fields now bursting with shades of green. Eight months ago, I was starting my steroid stage down not knowing if I would survive and actually see my next birthday. I saw that birthday, and was able to celebrate Thanksgiving, Christmas, and Tuesday celebrated my youngest child's ninth birthday. We questioned at times this past year whether I would be able to be self sufficient, yet last night was able to make dinner for an amazing friend and her two little boys. As I cooked though, my sick sense of humor thought of the 80's commercial with the little girl who says, "It's shake and bake and I helped!"

Every day has not been a victory, but everyday that I have is a blessing. I have had to stop working, but have been given an opportunity to write for a local paper from home when I feel strong enough. I made it through a nasty flu and cold season while on two strong immune suppressants and with two children in my home. I had friends disappear because they could not handle the stress or drama of my illness, but have seen old friends go to great lengths to offer support and I have been blessed by strangers who have offered support to my family. I had a relative tell my mother that she was going to lose a child because of her sins, but have watched a church and Sunday school class embrace and comfort her like family.

I have yet again received more labs that show elevated antibodies signaling that another episode is imminent, and I have begun to get migraines after reading and completing simple cognitive tasks, but I am not giving up or giving in to the symptoms. I will rest and enjoy every minute I have.

Thank you sweet friends for seeing us through this year. Thank you for supporting my husband and loving on my children during the times that I have been weak. Thank you to all of the friends and family who have watched my children or given them rides so that their lives have not been completely disrupted. Thank you to everyone who has prayed for me and my family. And thank you to the Lord who has allowed me to be a mother to two incredible kids, a friend to a bunch of rock stars, a wife to an amazingly patient man, daughter to two strong and loving parents, sister to two nutty sisters who share in my sick sense of humor, an insanely lucky aunt to a bunch of great nieces and nephews, neighbor to a community that never ceases to amaze me. Thank you!