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!