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.

God hears our cries

Two days ago, I was sitting in a coffee shop with my pastor and a dear friend. We were taking time to pray and talk about the news that I had cancer and about the procedure I was to have done the following day. My friend Brooke asked me what the ideal outcome would be for me. The three of us had been speaking about the importance of praying specifically. I explained that I was prepared for any treatment, as long as I could come out better on the other side.

If you know my friend Brooke, you are not surprised that she was not happy with that answer. She wanted more. "I don't like that outcome because then we have to be satisfied with cancer," she said. So we prayed for complete healing.

This felt like an awkward request for the Lord because I had already been told that the results of my biopsies showed at least stage 1 cancer. I was going in the next morning for cryosurgery and to talk to with the doctor about our plans. You see, I have always been afraid to ask too much from God because I was afraid I would be let down. This self preservation method is something with which I have become quite good.

John and I arrived at the doctor nearly two hours early for our meeting before the procedure. We waited and they never called us back. The nurse said that he did not need to meet with us. When we got back into the exam room, the doctor pulled up my results and told me that there were fairly developed cells, but not yet carcinoma. The nurse had made a mistake. We still needed to be aggressive, though with my immune deficiency and medication. We are optimistic that we destroyed all of the cells. We will check in six months to see if they have grown back. If I can make it a year without the cells growing back, then we can relax a little.

Another bit of good news...in a weird Kim Dean kinda way. During the procedure, I had a vasovagal reaction. Basically, from the pain or trauma, my body quit sending enough blood to my brain. Laying down usually resolves this and did this time as well. But I have experienced this after every surgery. Doctors always excused the dangerously low blood pressure on pain medication or my anemia. But this occurred again when I was first admitted to the hospital with convulsions. The vasovagal response is a result of a glitch in my neurological system. This is basically the same reason for the convulsions and palpitations. It is a result in the nervous system being over reactive, and sometimes not reactive enough. We learn something new everyday!

Do you believe that I am able...

I am not sure how to start this one, and know that there are many people I should have told first, but as a journalist, writing has always brought me comfort. I received news this morning that has brought me to my knees. In my prayers today, I kept coming to a verse in Matthew 9:27. Jesus had been healing people and performing miracles all day, but a group of men approached and asked for healing. Jesus turned to them and asked, "Do you believe I am able to do this?" "Yes, Lord!" they replied.

Last Thursday, I had biopsies to learn if the immuno-suppressive therapy I have been taking has given me cancer. My doctor told me that he felt it was just "pre-cancer," but he began to weep. He and I have been through a lot over the years. He delivered both of my sister's babies, brought my angels into this world, and held my hand when we decided at 27 years old that I needed a hysterectomy. He is the only man who hasn't quaked with fear under the assault of my terrified mother's threats. On Thursday, he hugged me and kissed my cheek. He began to walk out the door, but turned around for another hug. "You have always been a little extra special for me," he said with a parental tone. I laughed it off and told him it is because I know his secrets. "You have the gift of blessings," he said. I told him that I agreed because I know how blessed I am and have been in my life. "No, you don't understand," he said. "You have the ability to make people feel blessed, even when you are the one in pain." We both shed a tear and he walked out the door.

That afternoon, I lay in bed, physically and emotionally drained. I received a series of phone calls from my daughter to inform me that her school bus had been in an accident with a plumbing truck and I needed to come get her. I am so blessed that all of the children were okay, that the driver of the truck is okay, and that we have such amazing leaders in her school. A counselor from the school who is a family friend was on the bus within minutes to talk to the children. Her smile gave me such peace.

It was a long and emotional week for me, because I knew in my soul how it would end. I got the news this morning that the biopsies came back as cancer. I will have surgery Tuesday to remove what they see and then test to see if it has spread.

We are keeping this news quiet from our children for now until we have a better understanding, so I ask that you be intentional if you share this news. My husband and I will both celebrate our birthdays in a couple of weeks, and I will continue to count my blessings.

I promised my little boy that I will keep fighting to be healthy, and that is a promise I will keep. I have faith that the Lord will deliver me from my pain in this world or the next. Matt. 9:29 "...According to your faith will it be done to you." And with one touch they were healed.

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!

Updated info

Many of you know that my Uncle Jere passed away and we drove to Kerens last weekend for the funeral. My mother has buried both parents and now her big brother who was only 65 years old. My father was unable to attend the funeral because of his role in a fire investigation, therefore, my mother needed her girls. If you have ever been around all four Callaway girls at the same time, you know that our presence should come with warning labels. My father had reason to be concerned. Imagine my level of sarcasm and insanity intensified 4X! To make things more entertaining, you may remember from my last post that I was put on a new medicine to help with the fatigue. Well...I took the first dose and noticed zero improvement. The morning we left for East Texas, I doubled the dose and was flying high by the time we hit Killeen. I use that as my defense for why I didn't notice that my shrimp tacos I had for lunch were...well...not current! Oh, my family noticed right away and decided to point out the smell and nausea over watching me eat them...yep, after they watched me eat them! John was positive that we were all insane...but since he was driving, could not jump from the vehicle!

I still managed to make it to the viewing and funeral without anyone mistaking me for the guest of honor. The exhaustion, stress, and 100 degree weather did take its toll, but not until we returned home. It was nothing that some rest couldn't address.

The ring bearer from my wedding got married himself this past Saturday. We were so glad to see everyone. During the reception, I was able to get my feet to cooperate for line dancing. Everyone thought I was calling out the steps for my kiddos who were following along, but truth was...I was talking to my appendages. I figured I would give them all the help they could get. I didn't even fall out of my top...can't say the same for all of the participants. Here is a tip...don't let your dance partner flip you when you are wearing a strapless dress that might be a little too small. Something is bound to spill!

Okay...for those playing along at home...here is the latest medical update: I received a call from the Mayo Clinic last week to discuss the last relapse and the current treatment plan. I expressed my frustration with treating the relapses and not preventing them. Not only is there a risk of death and permanent brain damage with each episode, the repeated exposure to inflammation of the brain significantly increases my risks for dementia. I told them that I was frustrated with the fact that we are approaching the one year mark, and I have not moved forward. In some regards, have lost ground. The response I received was less than hoped for. The message was clear. I am lucky that I was able to go nearly 8 months between episodes. The miracle drug that is not preventing relapses, at least kept me out of the hospital and has slowed progression. "I honestly do not expect you to make an progress from this point," I was told. " We will be happy to just slow the progression." Because of my smaller size, the Mayo Clinic does not suggest suppressing my immune system any further than it is now. Despite numerous articles on the web about other treatments, there are not other successful treatments available. The top sites that recommend IVIG and Plasma transplants are from patients and patient advocates...not doctors or scientists. Truth is, we are doing all that we can right now.

The last couple of days, I have had increased fatigue and trouble with my speech and motor skills. This was explained a couple of hours ago when I received a call from my doctor. My latest labs are in and there is another increase in my TSH and antibodies. We are increasing my thyroid hormone again, but that has not made a difference in the past. Fluctuations are to be expected with the Thyroiditis, but this creates increased antibodies...which aggravates the encephalopathy. I also received a letter from the Social Security office today about my disability saying that I do not qualify for benefits since I took a few years off to be a stay at home mom. Fabulous!

It's not my hair!

I had an early start to my day. I had to get my booty out of bed, showered, and covered so that I could face the Stone Oak traffic. For those of you who do not live near San Antonio, Stone Oak traffic is the inspiration for many dirty, dirty words!

I had to get blood drawn for the Endocrinologist and then hustle to my Rheumatologist's office for an appointment. There were three people ahead of me at the lab and my appointment was in 15 minutes. The phlebotomist poked his head out and looked as though he recognized me. He waved me back, to the dismay of several grumpy...and large people. Hey this is the San Antonio Diabetes and Metabolism Center...my peeps are mostly portly! Anyway, the tech said, " You look familiar." I reminded him that he had drawn my blood before and I might have been a little bossy. I just said, "No, this arm...no that vein...you're using a butterfly right?" He laughed and reminded me it was a "No fly zone!" I threatened to cry and make a scene. The lady sitting across from me looked terrified, and I don't think it was about the needle. I got my way, and the tech got teased for being a push over by his co-worker. I was out in 5 minutes! See, my smart mouth has gotten me ahead in life...or at least ahead of the fat people. Haha...I'm just teasing!

I made it to my doctor's appointment for the highlights of the day. Paperwork and scales is not the best way to get repeat business. I'm just saying...anyway, my cutie pie doctor walked through the door. He smiled at me and asked, "Have you done something different with your hair?" No, silly...it isn't my hair! While that looked fabulous, it was the fact that he was introduced to my cheek bones for the first time since I began to see him. You see, I had been on high dose steroids for four months and had put on 20 lbs before I was sent to his office.

He informed me that he had conferenced with my Endocrinologist and she expressed fear in increasing my immune suppressants. I recently had labs that showed the current dose might not be working. They agreed to wait and see how my body reacted (which was what today's labs will show). "Explain this to me doc," I ordered...nubile (haha...a new word a friend taught me!) "If my thyroiditis was suppressed for nearly a year, why would we just adjust my thyroid hormone? After all, I was taking that dose when I was first hospitalized last year!"

He told me he understands my frustration, and would feel good about increasing the Cell-Cept, but this is a Neuro-Endocrine disorder. He is leaving the decisions up to the Endocrinologist. "How do we know that the Cell-Cept is making a difference if I am still relapsing?" I asked. "Well, you weren't hospitalized after the last relapse and you have survived three major episodes. I call that success!" he bragged. Hmmm...I'm sorry...could we try to prevent the episodes instead of just treating them? Apparently not at this time.

He did give me a new medicine to treat the increased fatigue. They give it to patients with narcolepsy. Fabulous! I told him that if we weren't married, and if I had a womb, I would offer to bear his children. Don't worry...he understood my appreciation and the fact that I am a little nuts.

I ended the visit with a trip back to the lab for a CBC to make sure I am not anemic. "We might ought to try coordinating our labs," dear old doc muttered. I sat for the draw and the phlebotomist looked at the arm that wasn't bandaged. She looked...looked...rubbed the veins...squinted real hard. "Why don't you just drawl from the other arm?" I asked. She took off the bandaged and looked...rubbed...and asked, "Did they have a hard time drawing you today?" "No," I answered..."only you!"

Spirit of a Storm

I started my Mother's Day today with one of my favorite early morning rituals. I made a pot of coffee and took my mug out to water the garden before anyone else woke up. This ritual began when I was hyped on steroids and only sleeping 2-3 hours a night. I left the house so that my stumbling and poor motor skills didn't wake everyone. Come on friends, you remember your younger days when a few late nights ended with you sneaking your drunk butt through the door and to your room. It never failed. You would bump something, but while trying to catch that, would knock over a vase with your butt. I'm not saying I did that! Well, that is how I became while sick.

I needed the quiet moment today. The last few have been rough for me. If you read my last blog, you know that I had a small relapse or flare in my condition, but felt well considering. I saw my doctor last week and she ordered several labs. We were both confident though as I seem to have made great progress. As the week progressed, I felt tired, but nothing that alarmed me. I crawled into bed a few nights with my head hurting, but still wasn't concerned.

I met a friend for coffee Friday morning and celebrated a sweet lady's birthday. By noon, I was getting my hair trimmed. Friends, you know that you have lost a lot of hair when your hair dresser quits charging you because the job is so small! I returned home and had to lay down for a nap. John called me on the house phone and said that my doctor had called him. See, he is listed as my emergency contact. "But today is her day off," I insisted. "Yes, but she gave me her cell phone number and needs you to call her right away," John informed me.

I called her, but she was on the other line. I waited for 20 grueling minutes wondering what she had to say. The phone finally rang and she apologized for having to call John. "Today is your day off Dr. Welch," I informed her as though she wasn't aware. " I know," she expressed sounding out of breath.

"I am on my way back to the hospital to see a patient. I received a frantic call from

my Assistant though because your lab results came in today. Kim, there is something

going on here and I am very concerned."

"That would explain why you are calling me on my day off then," I responded. "Exactly!" she answered. Lets break it down. My TSH (thyroid hormone) fluctuated violently from 1 to 4 and back again over the last year due to my Hashimoto's Thyroiditis. This is a very common disease so that did not surprise anyone. When I was started on the immune suppressants for the Encephalopathy, this volatility stopped. In fact, my TSH was at 0.8 which led us to stop my synthetic thyroid. I know...blah blah blah. Okay, my doctor informed me that my TSH had jumped to 8 in just two months. We do not have any idea why this would happen suddenly. To make things worse. My antibody level jumped over 500 points. This is a good sign that my immune suppressants have quit working. We do not know why. "Is this why I had my latest relapse?" I asked. "That is what I am thinking," she answered.

So where do we go from here? We don't know. We started the thyroid hormone back, but we have not adjusted the immune suppressants. If they do not start working again, than Chemotherapy will be my only option. Unfortunately, there is not a great deal of experience treating my illness, and very little experience using Chemotherapy. We do not have much evidence whether this would even work, but it is the only treatment left.

I have to admit, this was the first time that I have actually been scared. I sat in the floor and sobbed like a baby. I want answers. I want someone to tell me that they know what the heck they are doing. I want someone to tell me I will live to see my kids graduate! I want someone to tell me that I can make plans for 5, 10, 20 years down the road. I am tired of the physicians asking me, " well... what do you think?"

So, my Mother's Day was a mixed bag of emotions. Standing in the garden with my coffee cup in hand, I was listening to my ipod. A familiar song came on and one of the verses struck a cord...haha...(What do you expect? My mother was a choir director and church pianist!) Anyway, these lyrics say it best:

There's a hurricane that's raging through my blood

And I can't find a way to calm the seas

Maybe I'll find someday the waters aren't so rough

But right now they've got the best of me

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!