Behind Enemy Lines

It has been several weeks since I found time to update everyone on the latest health news here at the Dean house.  So much has been happening that it is hard to know where to begin.  That, and my memory is not so good these days!  Heehee

About a month ago, my son came home complaining that his neck was sore and he felt miserable.  Within a couple hours, he had a fever and a horrible headache.  He woke the next morning throwing up.  I was lucky enough to get an early appointment where he tested immediately for Strand B of the flu.  This was a fast hitting and vicious case.  Considering the fact I am on high dose immune suppression therapy, we had reason to be scared.  Many people with auto-immune diseases or suppressed immune systems die from illnesses, such as the flu or pneumonia, rather than their disease.  No matter how you feel about vaccinations, I was informed the next morning by my immunologist that the flu vaccine I received months prior probably saved my life.  I had just come off antibiotics for a sinus infection, and my body had not recovered yet. 

In my previous blog, I mentioned that it appeared my kidney function was off and that I was being put on a new medication.  I am blessed to say that the medicine is working.  It does mean that part of my brain is damaged, but I am focusing on the fact that there is a treatment and my body is responding.  I have also been successful at adding exercise back into my routine, so I have regained some strength and energy.  This is due to the clonazepam that I am taking as an anti-convulsant.  Prior to starting the Clonazepam, I would relapse after only a couple of workouts.  I have been exercising for four months and have been feeling better then I have in nearly two years.

Despite having those victories in hand, I have been struggling lately on another front.  Most of you know that I tackle my disease with prayer and a lot of sarcasm.  Well, increasingly, I am struggling with my memory.  This is partly from the progression of my illness, and partly from the medication that I take.  I forget to turn off the oven, leave water running, forget why I am at the store...etc.  My husband  and I joke about "Mama's brain being a little messed up," but the kids have now joined in on the comments.  For some reason, it stings a little a more.  Watch out parents...everything you say does get repeated.  Then I was sitting at the baseball field with other parents.  One started talking about her crazy mother-in-law and how she forgets to turn off the oven and the parent is afraid to leave her children with grandma.  Turns out, the grandmother was a client of mine when I worked as an outreach coordinator, and now we have the same problems.  I truly feel that the enemy is whispering in my ear because I have been so proud of the progress I have been making.  For those of you who are not Christian, I am sorry if this makes you uncomfortable, but I have witnessed miracles.  I cannot claim them without acknowledging that the enemy exists as well.

The most recent test has been over the last week.  I have been very busy and my body has been tired.  Then I picked up my anti-convulsant medication from the store yesterday.  I had missed a dose the night before because I didn't get to the pharmacy in time.  I ran errands yesterday morning  instead of picking up my prescription.  It was mid-day before I did, therefore, too close to my evening dose, so I missed another.  Last night, I finally got around to taking my medicine.  It was just in time, because I was starting to have symptoms.  The only problem was that the pharmacy gave me the wrong prescription.  Another missed dose.  I finally took it this morning, but I was already starting to convulse.  I had to spend the next three hours in bed while my body calmed down.  This was a reality check for me.  Just as I was claiming how well I had been doing and began to live a normal life, I was reminded that I am sick.  The medication only hides the symptoms, not the truth.  

I recently watched Secretariat with my kids.  The movie starts with a quote out of the book of Job.  After Job has been stripped of his family, wealth, livelihood, and health, he begins to throw a class act, well earned pity party.  God responds to him just as a good Rabbi would, providing answers in the form of a question.

     

                    Do you give the horse his strength or clothe his neck with a flowing mane?

                    Do you make him leap like a locust, striking terror with his proud snorting?

                    He paws fiercely, rejoicing in his strength, and charges into the fray.

                    He laughs at fear, afraid of nothing;

The only problem with this is that it is not in full context.  The Lord is referring to a horse heading into battle, one with his warrior.  I promise that I will continue this battle with the ultimate warrior guiding me, so that his mercy and love can be seen, and we can learn more about this disease for the future.

Gotta laugh!

While sitting at my favorite coffee shop last week, a beautiful woman from church walked up and gave me a compliment about my complexion.  With all the medication that I have been taking, my skin had been having an identity crisis.  It didn't know whether to wrinkle or break out like a teenager.  I was using my daughter's acne cleanser and wrinkle cream!  It is nice to be feeling like my old self and the compliment felt great.  Not only did it make my heart burst, it opened my eyes to yet another way I had made progress.  After being diagnosed with HE, it was hard for many people to quit being so serious.  I found that it made the pills (oh...and there have been many) easier to swallow when I took them with a dose of humor.

Those who remember the night I was first diagnosed might remember my mother, sister, and me laughing the whole night.  There were so many things we found ridiculous.  Well, lets start with the fact that I chose the day that I went into full body convulsions (which lasted a hilarious 12 hours) to wear a mini skirt and 3 inch heals.  Every time the nurse asked me to follow her, I wondered, "Could she do this?"  Heck, I have danced backwards in heals, but never while doing the hippy-hippy shake!  Another nurse asked if I was cold.  Then they told me to drive myself to the hospital!  Really?  And this was my brain doctor!

Then I had an MRI where I was asked to be still, asked to fill out a "check the box" form, and then expected to feed myself rice, peas, and chicken...which came with a knife!  We laughed as I had a food fight with myself and my mother requested a plastic knife.  My pastor walked in expecting to bring peace to the situation and the first thing he said when he saw me was, "Well, that doesn't look good."

Oh, and the Mayo Clinic trip.  While looking at the Air Mall magazine, I learned that they sell stainless steal wallets and portable microwaves...yet I had trouble getting a small jar of raspberry jelly on the plane.  My husband, who shattered his leg four years ago, was pushing me in a wheel chair while wearing his giant brace.  It was camouflage and looked like a prosthetic.  He was asked many times which war he lost his leg in...he eventually started making up stories.  Each one was better than the last, then they would wonder what kind of wife was making him push her all over the Mayo Clinic.  I must have been really bad off!   

 

As time went on, people close to me would have momentary amnesia.  My mother asked me once, "Who is cutting your hair these days?"  Hmmmm...I had a sister that owned a salon, my mother and grandmother went to cosmetology school, yet she thought I walked into a salon and said, "Please give me the hair cut that highlights how my hair is falling out and stringy...maybe a mullet?"  The truth was, my hair was falling out so fast that when I asked my hair dresser to trim it up, she didn't charge me!  Yep...she was done with about three snips!  All in good fun.

Then there were the times people felt the need to point out the fact that I had gained weight.  My steroids made me put on 30lbs in 4 months.  Being that I am only 5ft tall, I went up four sizes.  Several people thought I went through 3 different wardrobes and didn't realize.  Oh, one even said, "It's a shame when that happens to pretty girls!"  Yep, that was an attempt at compassion.

 There were times when it seemed impossible to get out of bed and I threw plenty of pity parties...no really, you can look back through the blogs!  What I have learned though, was that other than God, I played the biggest role in how my life was going to be.  I learned that watching the world go by while I laid in bed was too painful, so no matter how difficult, I try to get out of the house.  When given bad news, I choose to focus on what needs to be done to correct that, and I remember all of the ways I have overcome the past.  My favorite bit of advice was, "Even though you are in pain, you do not get to be one!"  Life gives us plenty of reasons to be sad or angry, so never miss out on a chance to laugh, even if it is at yourself! 

        

Little things...

If you have followed this blog for a little while, you are aware that I have found a new appreciation for the little things in life that we often take for granted.  This point came easily to me after being diagnosed with my illness, but it is something I pray everyone will take the time to notice.

Last Thursday night as I was tucking my 9 year old son into bed, he prayed for two things.  He wanted it to snow that night just like the rumors were forecasting, and he wanted a snow day declared so that the whole family could enjoy it.  "Even if they don't cancel school, can we all just stay here and play in it together?" he begged.  My 9 year old has become too aware of the fact that we may have limited time together, so he grasps at every opportunity for cuddle time or a family movie night.

As I crawled into bed, my prayers were that I would be able to watch my children enjoy something so simple, but new.  We awoke the next morning with the finest dusting of snow and ice and we were able to tell the kids that school was canceled.  The joy on their faces, the giggles in their voices, the squeals as they touched the snow for the first time took my breath away.  What a blessing and a gift for my family.

 I visited with my Endocrinologist Monday and we reviewed some labs that we have been monitoring.  My kidney function has been high for quite some time, and partnered with symptoms that have been occurring for nearly 2 years, we have realized some extent of the damage done to my brain.  Hashimoto's Encephalopathy attacks the neurons of the brain.  I experience inflammation in the brain.  The inflammation initially caused convulsions, migraines, and then stroke like symptoms.  With high dose steroids, most of the damage was reversed.  It appears that prolonged inflammation in part of my brain that controls my kidney function has caused permanent damage.

I am optimistic though.  If my new medication works, it will relieve many of my symptoms and allow me to sleep at night.  This will remove some stress off my body and possibly slow the progression of my disease.  This is my prayer.  Due to some potentially serious side effects, they will start me out slowly with the medicine and monitor my labs closely.  The first night was great, but the second was less impressive.  I am praying this is just because my body is trying to adjust and will settle down.

Thank you all for your support, prayers, and walking this journey with me. 

What is sufficient?

There has been progress on two fronts over the last couple of weeks.  First I want to share the medical progress.  Maybe I should find another word, as the condition that I have is progressive.  I am writing to share that there have been positive changes. 

Hashimoto Encephalopathy is rare, yet we do not seem to have a difficult time finding information about this disease.  Unfortunately, finding accurate information is similar to finding a unicorn.  I do not mean to burst bubbles!  I am just pointing out the fact that few have seen one.  This is true with my illness.  As many of you know, my new neurologist treated 22 cases at the Mayo clinic.  To put this into perspective, there are fewer cases published by the medical community in the US.  As the Mayo Clinic attracts those who have not responded to treatments or have been told that there are not answers, nearly all of the cases my doctor treated were progressive.

Shortly after my hospitalization in October, my doctor informed me that we have done all we can to prevent the progression.  Many people that I have run into comment on how much better I appear, therefore assume that I am healthier.  Realistically, my condition has continued to progress, but I have been able to remove some medications and healed from their side effects.  What has improved is our approach to the treatment.

When I was originally diagnosed 19 months ago, my immune system had attacked the neurons in the brain, which caused significant inflammation.  The inflammation created difficulties for the nerves to communicate with my muscles and organs.  High dose steroids and immune suppressants allowed my brain to heal, but I suffered stroke-like symptoms for a while.  During that time, caffeine and stimulants helped.  However, once the inflammation was gone, I was left with hyper sensitive nerves.  Physical, emotional, and chemical stress would result in a relapse in convulsions, persistent tremors, and poor motor skills.  I was taking medication for narcolepsy to fight the fatigue, but this aggravated the problems.  It also made me higher than a kite.

"Why waste energy trying to stop the progression when we can treat the symptoms?" my doctor asked.  I am now taking a sedative with my immune suppressants which has calmed the nerves, leaving me with very few symptoms.  Relieving my body of the symptoms has given me some renewal, and that is sufficient for me.  We had to increase the medication in November, but found that there is a fine line between calming the nerves and allowing me to drive, cook, and parent.  I now feel better than I have since being diagnosed.  I was encouraged to return to the gym to fight the fatigue.  This is something that put stress on my body before and would cause a relapse.  I have been back in the gym for almost a month now and I have yet to have a problem.  I still fight fatigue, but I have been able to regain some of the strength that I had lost.

The other progress that I have made is on the spiritual side.  Raised in a church, belief in God and his powers were never a problem.  But as I have been studying about healing in the Bible, I had to redefine the word faith.  Faith in Hebrews states that it is the belief that God can answer your prayer and trust that he will.  I always believed that God could heal people.  I have witnessed healing that doctors could never explain.  My problem was with trusting that he would heal me.  Early in my life, the identity I was given by the world was that I was not worthy of much.  That is an identity I accepted and then lived into as I aged.  I instinctively felt as though I was the exception to God's power.  I also have been raised around the medical community where illness has patterns and science proves certain things are inevitable.  If every case of progressive HE has ended the same way, I had trouble excepting that I would be the exception here as well.

Trust is something that we say has to be earned, but God has been unfailing and unchanging.  That should be proof enough.  So I wake up each morning and reject the muscle memory I have of accepting my fate and look to the Lord with Faith, hoping that is sufficient.

Matthew 21:21

Jesus answered, "I tell you the truth, if you have faith and do not doubt, you will be able to do what I did to this tree and even more.  You will be able to say to this mountain, 'Go, fall into the sea.'  And if you have faith, it will happen.  If you believe, you will get anything you ask for in prayer."       

Stages

Living with an illness that is unpredictable and progressive has its challenges, but as I am trying to teach my children, without challenges, we are left without the opportunity to learn and grow.  Our family has had plenty of opportunities to grow this year, but I personally reflect on them as blessings.  Please do not think that I am saying this is not the hardest time of our lives.  There have been plenty of tears shed, but I was given amazing advice from my cousin who was diagnosed with MS over 10 years ago, in her early twenties and well invested in medical school.  She explained that being diagnosed with a serious illness forces you to go through all of the stages of grief, and so do those who love you.  Every time there is a progression or something new, we begin the stages all over again.

I knew immediately what she was talking about back then, but it has only begun to make more sense.  I was recently told that due to the progression in my illness, we have had to increase my medication which causes fatigue, not to mention that HE comes with its own debilitating fatigue.  My neurologist has cleared me to exercise again, hoping that this will help combat some of the fatigue.  I have pulled off a few good workouts without any ill effects.  There is concern though from a few people close to me, because I tend to exercise as though there is nothing wrong with me.  It may be temporary denial, but it just is not in me to accept that I am not whole.  I hit the angry phase a long time ago.  That one came easily, but with devestating effects.  I didn't have an enemy to blame or fight, so I was angry in general.  I became angry with God, too, for a while.  I know in my heart that he didn't make me sick, but he had the power to heal and the power to deliver.  I threw a pity party and felt sorry for myself, my husband, and my kids.  I questioned my worth and the colateral damage being done.  

Then I heard the familiar Jeremiah 29 verse that reminds me that the Lord would not harm me and that he has plans for me to prosper.  Could it be that he allows me to deal with this illness as a way to prosper?  Yes!!!!  And not for my own sake.  I learned to be patient and I am learning to let go of control.  I am learning to turn to the Lord for help first, rather than keeping him as plan B in my back pocket.  But most recently, my youngest son has had a very tough time with my illness.  His heart is so big and his compassion for those around him makes it difficult to thrive sometimes.  Maybe it is because he is my little man, and wants to fix me.  I am trying to show him the way that my illness is a blessing.  We now appreciate the small things.  We celebrate every small step as though it is the finale.  We enjoy life and the pleasures that come with it more.  Our family has been blessed to have an amazing church family, friends that are as close as family, and a support system that knows no boundaries.  Millions of people walk the earth each day with blinders on and we rejoice all the ways we have been provided.

I attended a funeral on January 1, which most people would have seen as a terrible way to start the year, but it too was a blessing.  While the man will be missed and there is a vast void from him being gone, his family stood and shared all of the ways they were blessed through the years by his teachings and presence.  His grandchild sang the Lord's prayer with confidence, because he had been gifted with a relationship with our Lord.  I left the service feeling honored to witness such love.
 

My family continues to deal with endless medical bills and physical struggles.  We are looking into the appropriate time for John to have his ankle replaced.  As the only shock absorbing joint in the body, this will take him off his feet for months.  It will be the better part of a year before he will be fully mobile if all goes well.  This will put the full burden of caring for and transporting the family on me, yet my driving should be limited.  John is also the only financial contributor to the family now that I have been told not to work any longer.  A year ago, I would have crumbled with the stress and been overwhelmed.  Now, I know that the Lord will not only carry us through that time, he will continue to provide as he has done in the past with his perfect timing.

Angel Bradie



Logan and Classmate



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.