Brave the dark!

It has been a while since I last posted about my journey with Hashimoto's Encephalopathy.  For those who have been following along, I thank you for taking this roller coaster ride with me!  If you are reading this blog because you, or a loved one, has been diagnosed...I am living proof that there are not enough answers, studies, or cases to map out the path you are taking. 

I am about to approach the three year mark from when I was officially diagnosed, but I had been treated for my thyroid disorder and given multiple rounds of steroids the prior year which treated the HE unknowingly.  During my first year of diagnosis, after it had been determined that my case was both relapsing and progressive, my team of doctors and I researched as many cases as we could find.  All of the studies were for only two years.  The overall prognosis was not good for any of those cases.  Most ended the study with a major stroke, coma, or death.  This is not a path that any of us were willing to accept. 

No matter what you face in life...divorce, loss of loved one, loss of job...you have to re-invent yourself.  You have to mourn the life you had, but you have a choice about who you are going to be from that point.  As a child and young woman, I experienced plenty of times where I either gave or had my power taken away from me.  At the darkest time in my life, I grasped at aspects of my life that I had control over, often to my detriment.  So, when I was given the diagnosis of HE and told that no one could tell me how it would end, but that I would need to battle...well...I didn't initially put on my armor.  I went through a bitter, angry phase.  I crawled into a dark, and lonely place.  I put on the face of denial and pretended my life wasn't different.  Every time I hit a hiccup or there was a change, I would start the mourning process all over again.  There were plenty of times that I was hard to like and I am sure even harder to love.  But by the Grace of God...I woke up and realized that I had the control of how I would walk, and I had the power to be my own advocate.  My doctors and I made a new treatment plan, I began to put my health ahead of my pride, and started to work towards getting stronger.  After struggling to take steps and use my hands, not being able to exercise because the steroids had made my bones brittle, after my brain started fighting with my heart, I now am at the gym 3 days a week.  I am able to run and lift weights.  I feel better than I have since being diagnosed. 

However, I did hit the therapeutic level of immune suppressants we were aiming for, and then came down with a couple of infections.  With my heart condition and suppressed bone marrow function, this could have stopped my treatment all together.  We backed off the suppression, started antibiotics, and prayed.  Then resumed treatment.  Yesterday, I received word that my body bounced back.  Infections are gone and my blood count is exactly where it should be.  My heart only acted up for a few days, but settled down after therapy resumed.  I am blessed and a testament to the fact that answers are not held by anyone other than God...and he occasionally lets you have some input:)  So whatever you face, brave the dark and let your little light shine!         

"HE"...owns me!

It has been quite a while since I have updated this blog.  That is because I wanted to have confidence in what I was going to share.  Over the last two months, my life has flipped, spinned, and I have been tested. 

I purposely left this blog open for non-followers to be able to access.  This has allowed many patients, doctors, and family member who have been affected by HE (Hashimoto's Encephalopathy) to contact me, and I am honored.  I do not know where you stand on your belief or relationship with God, but I have to share what has been going on in our house, and I know it is nothing short of a miracle.

Many of you know that there was a fundraiser thrown for my family by some very special friends.  We had been forced to spend $20,000 in health insurance premiums and deductibles.  This did not include any of my medical bills.  I had been forced to try to work again, and I was blessed to work for an amazing company.  While the income was needed, each shift that I worked was speeding the progression of my disease.  I would return home after each shift with a migraine, nauseous, and often with tremors.  I spent my off hours resting, and this often was not enough to reduce the symptoms.  I began having episodes of convulsions every day and my medicine was no longer able to control them completely.  My doctors made the decision to stop my immune suppression therapy, and I continued to decline.  My antibody level began to rise and I was accepting the reality that my health was in a desperate place.

The first blessing was when my husband's health insurance had open enrollment and they accepted me with my pre-existing condition and did not put a rider on the claim (limitations for disease related bills).  This reduced our annual expenses.  The next blessing was that the fundraiser, which aspired to cover the $20,000 annual expense, was exceed with only half the projected attendance.  This allowed me to stop working and spend more time resting during the day.  Another gift came when my Immunologist called and told me that he wanted me to return to immune suppression therapy, because he did not agree with giving up on our fight.  I have been on Imuran for six weeks now, which is early in the treatment, but I am already feeling much better. All of these blessings were answers to prayer by my family, community, and strangers.

Now this is where it gets really nuts folks!  About six months ago, my 12 year old daughter was experiencing continuous pain in her feet.  An appointment with a surgeon revealed a couple of problems.  Part of the problem could be addressed by putting her in specialized shoes and aggressive inserts, but surgery would ultimately be required.  This was prior to the fundraiser and we were emotionally, spiritually, and financially rocked by this news.  Then a family that we are close to volunteered to purchase Bradie's shoes for her.  Not only did this help us with the financial burden, but we were overwhelmed by the love and support of this family.  They were in the midst of there own struggles, yet they were thinking and acting on our behalf.  People...if you do not have people like this in your life...pray now and find them.  They are like having Jesus as a neighbor...a neighbor who will drink a beer with you and coach your kids in baseball!  hahaha 

Bradie's pain continued to get worse though and she was barely able to walk.  A visit with the doctor revealed that the aggressive arches we put her in had actually made the situation worse.  Surgery would not address this new problem, just time.  Bradie cried tears of pain and frustration in her sleep and during the day.  This was so hard as a mother to witness.  Our family and community prayed again.

A month ago, Bradie developed what appeared to be a sinus infection and cough.  Just 24 hours after visiting the doctor, she was unable to move her neck, had an irregular heart beat, and fainted on me.  The emergency clinic I took her to examined her and decided she needed to go to the hospital.  A ride in an ambulance and a few hours in the ER resulted in an initial diagnosis of a virus that had inflamed tissue around her brain and spine and also attacked her heart.  We were moved to the pediatric Intensive Care Unit.  I was being exposed to all sorts of infectious diseases, but no one was going to be able to drag me away.  Our church, community, family, and friends prayed again.  Her youth group came and visited, her youth pastor dropped in to see her, and we waited.  Just 48 hours later, we were walking out of the hospital together without any sign of illness.  She has been healthy ever since.  Not only that, the pain in her feet has almost completely gone away.  She went to a Father-Daughter Dance last night and danced pain-free.

For the first time in years, our family feels healthy and a freedom to dance.  The Hashimoto's Encephalopathy does not rule our lives.  We were carried and shielded through the dark times by our faith in a God who heals and restores.  HE owns our hearts and souls and we are blessed!     

I told you so!

It did not surprise many in my family when I was diagnosed with a rare disease.  Don't get me wrong; they were horrified at the diagnosis of Hashimoto's Encephalopathy or HE.  It is just that as a kid, I stayed sick.  It became a joke in the family about which illness I would have during the holidays.  There were many Thanksgivings spent on the couch.  One year I had scarlet fever and the year my sister got married, I had Mono, strep throat, an upper respiratory infection, and my liver enzymes were elevated.  They were concerned my spleen would rupture, so I was put on bed rest from Thanksgiving through New Years.  One thing we noticed though, was fatigue was a huge factor.  If I stayed up late, I would wake up with a sore throat the next morning.  To say the least, my teen years were a lot of fun!  lol  As I would walk out the door with my friends or a date, my mother would remind me, "You know what happens when you stay out too late!"  I would wake up the next morning and be handed my orange juice with a big healthy, "I told you so!"  haha

If you have read my last couple of blogs, you saw my frustration with the fact that the Cell-Cept (immuno suppressive drug) was no longer enough to control the symptoms.  Clonazapam was added to stop the convulsions, then Gabapentin added later when the other two were no longer enough.  My symptoms continued to progress, so we made the decision to remove the immuno suppressive drugs.  Our theory was that if it was no longer enough to control the symptoms, then why put myself at high risk for infection and the other side effects. 

I rapidly declined and began to bounce between episodes of convulsions and tremors, then experience episodes of stroke-like numbness.  The only answer was to increase my medication to a higher level and go to bed.  As a mother, that was not a good solution for me.  I wanted to be proactive and not just curl up in the fetal position. 

After a whole community of prayers, I received a call last Tuesday from my Immunologist who had consulted my other specialists and decided to re-start immuno suppressive therapy with a stronger medication.  Of course, I will have to wait until I clear out the sinus infection I came down with after New Years, but it is a start.  My blood count will need to be monitored closely with this medicine, but I feel better knowing that we are taking steps to treat and not just mask the symptoms.       

in limbo

I am sorry that it has been so long since I have sent an update.  Between life, the holidays, and my scrambled brains...coordination has been difficult (pun intended.)  I went to the doctor this morning and finally have enough to share.

A month ago, I experienced a fairly significant increase in my symptoms (tremors, migraines, and convulsions.) Following a day of continuous movement, and I mean the involuntary type, I developed a headache that would not go away.  I awoke the next morning with continued pain.  After being awake a few hours, I suddenly lost the ability to move my left arm.  I began to drag my left leg a little as well.  This improved almost as quickly as it occurred and within a few days, I had regained full use. 

I notified my neurologist the following morning about the new symptom and of my concern.  I was assured that I just needed to increase my medication during those times.  I stressed that the increase made it impossible to stay awake, but my doctor's orders remained the same.  I have had three or four additional episodes that were less in severity but longer in duration.

I met with my immunologist today who agreed with my concern, but does not know of any new options.  He is considering putting me back on the Cell-Cept (immune suppressants) but wants to see my lab results and consult with my neurologist and immunologist first.  I have started taking Celebrex for the muscle and joint pain and I was asked to consider returning to the Mayo Clinic.  I will update when I have the results of the conference.  

...amongst the frustration

My hands are committing treason today and doing their own thing, but it has been so long since I have been able to share.  I placed my laptop on a table at a local coffee shop this morning.  I ordered a scone and large coffee, looking forward to a relaxing start to my day.  Within seconds, I tipped my cup with a rogue finger, but luckily, it just wobbled and corrected itself.  I took a deep breath and opened my scone.  After a few bites, I looked on the floor and realized that it looked like a child had been eating in my spot, then realized the mess was all my own. 

I began this blog two and a half years ago as a method to keep my friends and family updated.  It soon became a tool to express my feelings about my disease and current methods of treatment.  One blessing, I had hoped for and was given, was that I would reach other patients or family members with Hashimoto's Encephalopathy.  I recently received a comment on my last blog from a daughter of a HE patient.  My heart aches for the pain she experienced, but I also rejoice in and am comforted by her sweet words.  After all, there aren't swarms of people wearing support t-shirts or wearing ribbons for HE.  Lisa shared her father's experiences with various treatments.  That is why I do this. 

As many of you know, I first experienced mild symptoms (headaches, anxiety, difficulty with speech, hand tremors, and thyroid dysfunction).  I was hospitalized after starting to experience what was initially referred to as myoclonic jerks.  High dose steroids stopped the movements.  I had mild stroke-like symptoms for a few weeks, and then my only symptoms were from medications.  Complications from the steroids sent us to the Mayo Clinic searching for other possible medications.  After a relapse of myoclonus, I began Cell-Cept.  This allowed me to taper off the steroids, stopped symptoms, and within a year, I was able to discontinue the insulin from the steroid induced diabetes.  Nearly two years later, I began to experience tremors, poor motor skills, memory problems, and headaches despite the addition of Clonozapam.  My doctors and I agreed that the benefits from the Cell-Cept no longer out weighed the risk factors.

My immune system was fully suppressed for nearly 3 years.  Now that it is awake, it has started to attack the lining of my stomach and intestines again.  The tremors and muscle spasms now include my heart, creating arrhythmia's.  I  had originally been told that a pacemaker would be in my future, but I was told at my last visit that this may not be an option.  My Cardiologist is concerned about the complications my auto-immune disease would create.  He prescribed a new medication for the rapid heart beat I experience occasionally, but I have not been able to take this due to periods of time when my heart is slowing down too much. 

My Neurologist increased my medication to slow my tremors and aid with pain they are treating as fibromyalgia, but is common with HE.  However, I have been having trouble with it interfering with my work and need to drive.

I have begun to have dizzy spells after standing for an extended period of time.  This is most likely related to the low heart rate, but it could also be a result of my disease, blood sugars, or my medication. 

On a positive note, I was picked up by my husband's insurance during open enrollment.  This will mean we will be paying more than last year, but the benefits will be much better.  It is also less than what we would be paying if I had stayed with my own private insurance which was going to increase this month. 

Other than the dizzy spells, chronic fatigue, muscle and joint pain, arrhythmia's, and roller coastering blood sugars, all is well on this end!  I am taking my kids camping this weekend and I turn 34 in two weeks.  The holidays are approaching and I still feel blessed amongst my frustration.  

He prepared us for this...

Two weeks ago, I was in full mom mode.  I was taking my fifth and seventh graders to school, making sure home work was done, running Logan to Baseball practices and games, hauling Bradie to tennis practice, while figuring out how to fix dinner and keep up with household chores in the process.  This is not much different from what many American mothers are doing these days.  However, having a progressive neurological disease made this a little more challenging. 

We have been reducing the immune suppressants that were slowing the progression of the disease, but since I have had recent relapses and increased symptoms while on them, we decided that the complications and risk factors from the medicine no longer out-weighed the benefits.  I had begun to feel pressure building in my head.  After a couple of days, I began to feel my insides spasming.  Then the tremors started in my hands.  Random muscle twitching consumed my whole body.  Luckily, I had an appointment with my Immunologist scheduled. 

He introduced me to a new Physician's Assistant that had joined his practice.  He reviewed my case with her while I sat feeling a bit like a dancing chicken at the circus...and probably resembling one as well.  Lacking grace, I climbed upon the exam table.  I tried with all my might to not fall.  My balance has been hampered for several months.  We discussed my current symptoms and a previous relapse I had after my last appointment.  That relapse was the most intense one I had experienced since coming off of the steroid treatment.  It left me with stroke-like symptoms on the left side of my body.  I wasn't paralyzed, but had severe weakness.  Like trying to walk through water, I was capable, but all movements required concentration and more effort.  Sitting on the exam table, I was asked to perform a few tests similar to a field sobriety test.  I failed...miserably. 

My doctor and the PA agreed that I needed a new medication to calm this episode, but their first choices in medication would have been affected by my heart medication.  The PA suggested a drug she had used with patients who have chronic pain.  It would calm the nerves and slow the spasms and convulsions.  I was sent home for the day as they did not know if I would be capable of working or driving.  Remember the long list of responsibilities I mentioned before?  They also include working a part-time job.  I picked up my prescription and climbed into bed.

An hour into my first dose, I felt intense pain in my arms and legs.  Shortly after, I felt like I was boiling in my skin.  "These are just side-effects that will go away!" I assured myself.  Nearly four hours after taking the drug, my phone rang.  It was a nurse from my doctor's office.  "Whatever you do, do not take the prescribed medication!" I was ordered.  Uhhhh...too late!  I informed the panicked nurse that I had already taken a dose.  He then explained that my neurologist had been consulted and the new medication would increase seizure activity and cause a stroke in patients like me with a seizure disorder.  "Fantastic!" I said, not even trying to hide my sarcasm.  I was then instructed to increase my Gabapentin to 5 times my current dose.  "Hmmm...two makes me stoned," I stated.  "Well, this is what the neurologist would like you to try," he said. 

So, I have been taking a magic carpet ride for the last week.  I have not made it to the recommended dose yet, but I am getting there, and my body is slowly adjusting.  The doctors have done all they know, are grasping at things to try, but it is ultimately in God's hands.  This incident could have made me mad or scare me, but I am at a different place with my disease.  You see, I was prepared in a way for this time in my life.  Nine years ago, I layed in a hospital bed holding my infant son.  He had been diagnosed with failure to thrive.  He had stopped eating, drinking, and growing.  He had lost too much weight and a feeding tube was the only thing sustaining him.  We laid in a hospital while every available specialist tried but failed to figure out why.  It was obvious that we were losing him, and becoming clearer that we were running out of time.  His hair had fallen out, his skin was translucent, and the feeding tube had given him an infection in his lungs and sinuses.  We felt helpless and all we knew to do was to lift him  up to God and beg for protection.  I knew we had not lived lives that deserved his grace, but prayed for mercy.  Strangers entered our quiet hospital room in the darkest hour while we prepared to say goodbye to our baby.  They sang Amazing Grace, and prayed over him.  Thirty minutes later, my baby ripped out his feeding tube and screamed bloody murder.  The tool keeping him alive was gone.  I lost my mind for a moment, then noticed his screams had turned into a hunger cry.  He drank two bottles and ate three jars of baby food.  It all stayed down and he was released 12 hours later without a doctor's explanations. 

God had us then, and he has us now.        

Time reveals all

My last post was some what melancholy, but we now know that I was in the middle of an "episode."   I had begun to taper off my CellCept, but it had only been a week.  There is not any reason to think that this episode was triggered by anything other than stress and fatigue.  We began tapering off of the CellCept because we did not have any recent evidence that it was slowing the progression or that it was helping more than it was hurting.  For those who are walking a similar journey, please know that I fully support the use of CellCept.  Despite all of its downsides, it was my superhero that gave me my life back...spandex and all!  It allowed me to come off steroids and stay off of them. 

Normally, I am able to stop an episode by hydrating and going to bed.  I just wake up with what feels like a hangover...or like my brain was put in a Magic Bullet!  I woke up after this last episode with left side weakness...the typical stroke-like symptoms that are seen with people who first present with HE and are not being treated.  I have been on thyroid replacement for years, my immune system was still fully suppressed, and I was taking Clonazepam to help with the convulsions, and Gabapentin to calm the nerves.  So, we can say that this episode is just the natural progression.

Since then, I have recovered quite well.  I am down to a 1/4 of the CellCept without any major complications.  I have had a little more energy.  I still fight headaches and now have mini episodes when I am tired.  I just have twitching and small convulsions that do not last very long.  I feel blessed.  We have had a full summer of spending time with family, celebrating both of my children's birthdays, and time with friends (though not as much as I would like). 

My daughter went to an amazing tennis camp and a mission trip.  She has grown physically and mentally.  My son enjoyed having his parents to himself while she was gone!  I could not ask for more at this time in my life...well, maybe fewer medical bills...but then I am good!  hahaha