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