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