Clarity

Today is my day off and the sun is shining. Maybe that is the reason for some clarity. My kids are on a trip with their grandparents, so I awoke to a quiet house. This has given me time to sit and put some thoughts down.

Last Friday, I went for an EEG. That was the test to see how my brain is doing. The first one that was performed the day I was initially hospitalized showed a small bit of damage on the left side of the brain. The test from last Friday showed more damage to the brain on the left side from the last relapse. It is safe to assume that with every relapse, there will be more damage. This is a scary fact, but the one that we face. The obvious question is how to prevent a relapse.

The answer is that we really do not know. We know it is a relapsing and progressive disease, but we do not know much more. We are trying different things, but have no guarantees of what will happen. For those who know me best, you know that is the hardest part. People ask me all the time about how I am doing. This is the truth as I can best describe it:

I wake up each morning and get to raise two amazing children. I get to influence what they eat, wear, watch, and do while getting to protect and challenge. I get to run a house and decide what gets done, what we need, and even what is for dinner. I am blessed to be part of a Senior Center where I help make decisions about ways to grow and serve the members. But I can't make my hands quit shaking. I cannot prevent random muscle spasms. I can't promise I wont fall down walking across the room because my feet didn't get the message to move. I can't control my weight. I have little control over me!

I had an experience last Saturday that scared me and it has taken a week to digest. I started on my new medicine to combat the damage that has been done to my bones from the steroids. I didn't notice any changes in the way I felt, so I drove into town. While at the store by myself, I started to feel different. As I would look around, instead of a panoramic view at things, my brain was giving me choppy snap shots. This made me dizzy. My blood sugars were also dropping, which didn't make sense...as I had just eaten and taken my steroids. They should have been rising. I quickly headed to the check-out, grabbed a pastry and climbed in the car. I was able to eat, but the following minutes are foggy. My head cleared enough that I was able to drive home and climb into bed. I saw the doctor on Monday to discuss what was going on with the medicine. He said that I am probably getting a little anemic from the immune suppressants, but we are going to let my body try to rebound on its own over the next couple of weeks. The dizzy spells are from the bone replacement meds, but they are in my body for a month. We do not know if the symptoms will completely go away or if I will experience the same symptoms every month.

The bottom line is that I have tried to keep my schedule and activities the same because that is all I have control over in my life. Those are the things that make me feel normal. The truth is that we do not know if this medicine will work, but there are choices I can make to help it along. I need to look at the areas I can back out and the things I can let go of for now. This isn't easy for me, so I ask for your prayers, patience, and understanding.

News of all kinds!

Well my sweet friends and family...I have news to share with all of you about the whole Dean Family! I went to the doctor this morning to have another EEG done to see if there has been a progression and if there was damage after the relapse in August. But before we go into that...let's talk about some other rockstars:

Most of you know that my husband, John, fell off a roof a few years ago and shattered his ankle. Plates and screws, countless surgeries, and nearly a year on bedrest couldn't put Humpty back together again because the bone died. He was told that ankle replacements are only good for about 15 years, so he wouldn't be a candidate for another 25-30 years, and even then, he might not have enough viable bone. The ankle would continue to crumble, so they put him in a brace to slow the process. Last year, his doctor told him that there was significant disintegration and he would probably need metal rods added to the joint within the year.

We arrived at his annual follow-up appointment prepared to schedule a surgery that would return him to bedrest for 3-4 months. With my health situation, this was scary for the whole family. They x-rayed his ankle and entered the room surprised. His ankle had hardly changed over the last year. They sweetened the pot by telling us that a new ankle replacement has been invented that will last and they think he will be a candidate for it. If he can wait just 3 or 4 more years, he could get the replacement and not have to ever have the joint fused! The good news kept coming. John has been in pain every day since the accident. They looked at where the pain was coming from and told him it was from scar tissue. They gave him a shot of steroid and the pain is almost completely gone! He feels like a new man.

Bradie is loving the Fifth grade. She was assessed at an 11th grade reading level last week. What do you think the chance is that we will find a book at her level and it will be appropriate? I guess there are worse things to worry about. She received an award today at the pep rally for her assistance with the kindergartners. We are very proud of her!

Let's see...Logan...hmmm....well, he is totally pumped that he is about to lose another tooth! The third grade is rolling along and his teacher was a perfect match for him. He is making progress with his reading. Our goal is to be at grade level by the end of the year, but this will mean a lot of extra work. We are very proud of the extra effort he is giving.

Ok...I started on a slow progression of the immune suppressants Labor Day weekend. Last Friday, I reached the full level. By Sunday night, I was very sick to my stomach. I woke up Monday morning swollen like a tick and sick as a dog (hmmm...detecting a theme). I had a board meeting to attend with a full agenda of serious topics. As if that was not stressful enough, when I got out of the meeting, I learned that one of our exercise contractors had resigned. News had traveled and my office was full of people asking about what had happened. As a result of the stress, my sugars went through the roof, and then I realized I didn't have my insulin with me. I have an amazing group of people at my office who allowed me to go home a little early. My kids were great and allowed me to lay down and rest. The good news is that prior to the immune suppressants, a day like that would have triggered a relapse. While I had effects from the stress (swelling, headaches, increased tremors, loss of balance, muscle spasms), there were not any myoclonic jerks. This has given my neurologist hope that the drugs are helping.

I had my EEG this morning at 10am. They spent about 30 minutes attaching wires and Vaseline to my head! Then I got to relax in a lazy boy while they mapped the brain activity. When they finished, they removed the wires and rubbed the Vaseline with a wet rag. Oh joy! My thin and naturally curly hair that is straightened every morning stood straight up in the air! That was when they informed me that there was not a room available and I would have to wait in the lobby! Awesome! After an embarrassing 20 minutes with strangers, Dr. Yankov peeked around the corner and asked me to join him to look at the EEG. He turned to me as we entered the room, gave me a hug, and said, "Oh, you have gotten all big from the steroids." Ahhhh....I know we have a language barrier my Russian friend...but telling a woman she has gotten bigger is never a good idea in America!

He reviewed the EEG and confirmed what we suspected. There was increased damage from the relapse back in August. He noted though that it is in the same area as the other damage and not at a surprising degree. This probably explains why I have never been symptom free since the initial onset. It also means that the hand tremors and balance issues probably will not get any better. He did soften the blow with optimism about the immune suppressants. He said that he wished we had started them sooner.

The most important news that I have to share is how blessed I feel! For anyone who questions whether God exists, just needs to have walked in my shoes over the last few months. Every time that I thought life was getting too hard, and that I couldn't take another step, God would send one of you my way. It never failed that on a day I was feeling down, one of you would send a card, pick up the phone, or send a random text. Some of you have gone to the extreme with your support and it always leaves me speechless! Some of the strongest support has been from strangers. Please know that it means the world to me! I have received cards from Sunday school classes from all over the State. I read every hand written message and thank God for each of you!

But my mommy said I am special!

I was dreading the Labor Day weekend and questioning if throwing a big enough tantrum would prevent it from arriving. I knew that I had to start my immune suppressing drugs on Saturday. There are many people who take these drugs and adapt to the side effects successfully. However, we are adding immune suppression on top of high levels of steroids...which are immune suppressants! After fighting years of ulcers and gastric disease, taking drugs that are known for causing severe abdominal pain seemed daunting.

I took my first dose of medicine Saturday morning. My daughter woke up that morning with a swollen throat, fever, and body aches. By that afternoon, my son had a sinus headache and was vomiting. Shortly after getting both kids in bed that night, my daughter returned to the living room with a bloody nose. Awesome!

Sunday morning arrived and my children were feeling a little better. John was going to be gone, so my wonderful in-laws agreed to watch the kids that evening for me. I spent the evening with a friend and found myself overwhelmed. I realized that while my life had been shaken. Each minute seemed to drag while we wait to see if these drugs are going to work, make me sick, put me at risk...dominate my life. I know this must sound selfish, but my feelings were hurt that the world kept turning. I felt like the little girl watching her friends on the roller coaster because she was told she couldn't ride.

I spent several hours on Monday reviewing medical journals and articles that my cousin Laura was able to pull for me. I stumbled across some very interesting things. There have been very few patients that have displayed the number of symptoms I have, and few have had them at the level or extent that I have experienced. It was refreshing to learn that there have been a few patients that have been on the immune suppressant that I am on now. Unfortunately, I haven't found any cases where they were able to come off of the steroids completely. Each of those patients also seemed to be classified as having a progressive case. This means that their disease continued to progress rather than occasionally relapsing or permanent remission.

That initially left me depressed and negative, but then I remembered a word...Faith. Who says I will not be the first to come off of the steroids? Who says my disease has to progress? Why are we praying if the future is set in stone. God gave the Israelites manna as daily bread...meeting their needs one day at a time. He didn't promise that it would be easy or without trial. So I am trying to keep the faith.

I will be up to full level of medicine by Friday. My stomach has been a little upset and I run a low fever in the evenings when I am tired, but have been feeling better than I expected. I am exercising a little to fight the bone loss and will begin the calcium next week.

$@*#@!&*#$ (When you can't say anything nice...)

My amazing cousin, Laura, told me last week that I don't always have to be okay...so here is some honesty:

I bawled like a baby the whole way home today...but when I could no longer see the road because my eyes were swelled shut...I decided it was time to buck-up! Things could be worse...I could have to wear tights to work everyday!

Seriously! We start the appointment with the scale. That normally would not bother me, but it revealed that I have gained 15 pounds in just over two months! Holy cow batman! The doctor was sweet enough to say, "Well you don't look like someone who has been on 60mg of steroids for two months. You must not have gained much weight!" I started to feel better, and then remembered how much money he is getting paid. Of coarse he was nice!

He reviewed my file and we discussed two drugs he was interested in using. He gave me the laundry list of side effects and risks. "These risks and side effects are very serious," he said. I smarted off and said," the encephalopathy isn't a walk in the park either!" At least he has a sense of humor. He informed me that he wasn't giving me a choice, he just wanted me to know how unpleasant it will be. The one we chose is pretty strong. Chemo drugs are the only drugs stronger. The plan is to be on them for 2-3 years, and then see if I can come off of them.

There are lots of "unknowns!" My doctor made me feel confident by assuring me that he isn't an expert on my disease...because there haven't been enough cases for anyone to be an expert. Out of all the research he has done, he said the best information came in the format of a doctor noting in a journal, "Hey...saw a crazy patient that I think has Hashimoto's Encephalopathy...and think this drug might work." He found a possible 120 cases in the world ever reported...and every patient responded differently. He promised me that he doesn't know if this drug will work, or how much we should try, or what will happen. He doesn't know if I should work, exercise, or stand on my head. We are on a "let's try and see" plan.

Here is the good news...not: The Mayo Clinic thought an injectable drug might be easier on my stomach and intestines. The drug we are using does not come in that form. But, my doctor said that it wouldn't matter, because the damage to the stomach and intestines starts after the drug is in the blood stream...therefore wouldn't matter what form I receive. Awesome! He also said, that it will be at least 3 months before I can be off steroids...if I will ever be able to come off them. This was right after he said, " It is not a matter of if the steroids will kill you, it is a matter of when." My pancreas is already damaged and now my bones have been stripped of calcium. I start calcium replacement tonight. The label says, "Do not take if you have stomach, intestinal, or kidney problems!" Doc found this slightly amusing...and reminded me that we don't have a choice.

I will have to get a pneumonia vaccine, flu shot, plus the swine flu shot. They all come with risks...but none are worse than mushy brain! He said to avoid sick people, but there was no point in living in a bubble. With two kids, I am going to be exposed. We will just have to roll with what ever happens.

I keep reminding myself that God will not give me more than I can handle. He doesn't promise life will be easy for anyone, but that we are not alone. With so few people who have walked in my shoes, this is hard sometimes. I have found myself mourning the life I had and plans I had made just two short months ago.

I love everyone who has been praying and offering support. It really is what has given me strength. I haven't had the time or energy to thank everyone properly, but please know that nothing has gone unappreciated.

We're off to see the wizard...

After getting a little bit snippy with a few folks, I received a phone call this morning from the Rheumatologist. They asked me to come in tomorrow afternoon. They have received all of my records and are ready to discuss the treatment plan. Here is where I need my prayer warriors:

The Mayo Clinic Auto-Immune Neurologist wants us to use Imuran or CellCept to treat my illness. Both are actually anti-rejection medicines that are often used in transplant patients. Neither has been used extensively treat someone with my condition before. I'm loving the Guinea Pig aspect of all of this! Unfortunately, due to the complications with my stomach, intestines, and kidneys...it would be best to use injectable drugs, rather than oral medications. What's another shot? I can handle that! The biggest complication that I see is that it will reduce my bone marrow function and blood cell count. I also have a history of developing infections, so they will be monitoring my blood levels DAILY for a while. Yep...DAILY! Whoo-hoo! This is not a medical synopsis, but basically...my immune system is attacking my brain, so we are going to attack it back. After about six weeks, we can try to reduce the steroids that are treating the inflammation in the brain.

But lets get to the very serious stuff...the drugs can make whats left of my very thin hair fall out! Houston...we have a problem! I'm just kidding...it will not be the first time I have had a bad hair day. In fact, I wake up every morning wondering, "Who's hair do I have today?" I have had lots of hair identity crisis over the years. For your amusement, I have attached proof.