I first started this blog...

I first started this blog a few years ago before heading to the Mayo Clinic.  It was a way to keep my family and friends up to date on the news we received.  I had only been diagnosed with Hashimoto's Encephalopathy for two months, but already was struggling with treatment options.  At that time, prednisone was the only option we knew about.  It is the "go-to" drug for many auto-immune disorders.  In fact, HE is also referred to as Steroid Responsive Encephalopathy or Encephalitis.  However, many of you know that there can be complications from the prolonged, high level dosing and I had them all.  My main point is that when I started this blog, I had been told that there were only about a dozen cases of HE diagnosed, studied, and accepted by the medical community in the United States...ever.  There were about 100 cases world wide due to the higher diagnosis and acceptance rate in the UK.  There were not any support groups to turn to when I was having a bad day or people walking around wearing t-shirts or walking races to show support and raise funds for research.  So I continued this blog when I got home.  Over the last few years, I have been emailed by people who have lost loved ones to HE, were recently diagnosed, and sadly, many parents with children who have been diagnosed.  The number of cases has grown because more doctors are learning and realizing that this disease is not just something they heard about in medical school.  The support that I have received helps me continue to fight, and I thank you for being patient while I whine.  Keep emailing me with your questions! 

I am going to be completely honest with you...the latest news from my doctors ticked me off and I had a mini meltdown...until I realized that it wasn't doing any good and I was getting funny looks.  Over the last month, I was told that the heart issues that I am having and have had for a while are being caused by autonomic neuropathy.  The part of my brain that controls the involuntary aspects of life, like heart rate and blood pressure, was damaged or being attacked, therefore...my heart changes beats (kinda like when your radio picks up another station and interrupts your favorite song with something obnoxious!)  My blood pressure will also randomly drop causing dizzy spells and fainting.  I am on meds to raise my base line blood pressure so I don't have that problem.  There is still a debate going on as to whether or not there is anything to do to address the heart arrhythmias because there is still the chance that my heart could go into a block and stop beating.  Good times!  But here is where the party got fun...

I went to my immunologist who ran some tests.  They mostly look like a field sobriety test.  Walk heal to toe in a straight line, touch this moving object with one finger...you know...complicated stuff.  Not only did I fail, I failed all of them on both sides of the body.  Failing means that I almost fell on my face and nearly poked the doctors eye out with my finger.  So...we increased the immunosuppressive therapy to address this slight progression.  Then I received a call the next day that my blood work showed elevated liver enzymes.  This is common with immunosuppressive therapy, but usually requires stopping the treatment.  That would not be good.  The other likely possibility is that this is because of my immune system attacking my liver. The treatment is immunosuppressive therapy, so if this is occurring while on the highest level of immunosuppressive drugs that I can take...not good either.  This is why I had a melt down.  The strange thing is...my first instinct was to go get a beer!  For those wondering, I would have to be a raging alcoholic for alcohol to play a part...but it is still a good idea to not binge:)  I'll keep you posted with what I learn.    

That wasn't me...

I believe the most painful time we experience after a life changing event is the moment it gets quiet.  The friends and the chaos that first surround you disappear.  You wake to the betrayal that the world kept turning and people kept living their lives.  I remember the feeling of being overwhelmed by those who surrounded me, mystified at their ability to laugh and smile.  I was trapped inside a rogue body that hurt physically and emotionally.  I didn't recognize myself and retracted from my life.  I didn't want to be seen, but felt hurt by the absence of my loved ones.  It was a crazy time...I was crazy.

That was about three years ago.  After being diagnosed with Hashimoto's Encephalopathy, I was admitted to the hospital and started on high dose IV steroids.  Within three days, I had steroid induced diabetes and was insulin dependant.  I went home on high dose prednisone which is the standard treatment.  After three months, I had gone up four dress sizes, I had to start treatment for the bleaching of my bones, my ulcers had flared, had insomnia and many other complications from the steroids that changed who I was and how I thought.  My doctors referred me to the Mayo Clinic for other treatment options because they were convinced the steroids were going to kill me before HE did. 

I found the answer to the steroids in immune suppressive therapy.  While not ideal this treatment allowed me to slowly return to my life.  I was able to attend my daughter's choir concerts and my son's baseball games and practices.  I was able to be present in my own life enough that I renewed old friendships and found new ones.  I took up new hobbies and began exercising again.  I even committed to running a half marathon in Las Vegas.   It has been a roller coaster ride of promise and threat since then, but the one thing I stood firm about was that I would not return to the person I was while on prednisone.  I would rather face illness than the darkness that time brought.        

Back in May, I began to faint and have dizzy spells.  While undergoing tests at a Cardiologist's office, I had my first relapse in six months.  The positive note is that we learned a great deal.  My heart skips beats due to a miscue from my brain.  Then I get an adrenaline dump which increases my pulse. To compensate, the vessels dilate to drop my blood pressure.  Since my base line BP is already low, I faint. My neurologist confirmed on Friday that this is all autonomic neuropathy.  Blah blah blah...what this means is that they put me on medication to keep my blood pressure higher than usual so that when an episode happens, I keep enough blood going to my brain (always a good thing!)

Here is the catch, the medicine is a steroid.  While cleaner than prednisone and a much milder dose, it still comes with insomnia, muscle pain and joint pain, immune suppression, and this week I have had to restart monitoring my blood sugars.  We will know in a couple of weeks if I will have to return to insulin.  Fear that the fatigue of a half marathon and traveling will create problems, I have withdrawn from the Vegas race. I was also informed that I should count my blessings that I am still allowed to drive.  I am feeling a little overwhelmed...so I did what any super bummed woman should do! I signed up for a 5K obstacle race and a painting class that will really test my lack of fine motor skills! 

Frank but fearless

Some of you know that I started this blog when I set off on my journey to the Mayo Clinic after being diagnosed with Hashimoto's Encephalopathy.  Brick walls had been carefully orchestrated around my heart to keep anyone from getting to close. Diaries and journals were traps that might allow someone to learn something about me that I didn't want them to know.  I wanted full control of what I shared with people.  This blog allowed me to share with my friends and family bits of news, but the way that I wanted and I only had to relive the moments with the specialists where I learned my projected future once.

I continued this blog when I returned for selfish reasons.  I needed an outlet to process new facts and a place to vomit my emotional tantrums that wouldn't hurt anyone.  Along the way, I began to heal from the inside and found peace with my illness, lack of information, and the loss of my life as I knew it.  I found that there are amazing people in this world, people who are far more lost than I ever was, and a love for others who are struggling...for whatever reason.

Initially, I was told that there had only been about a dozen cases of HE studied in the United States.  I have learned over the last few years that there are cases being diagnosed every day.  Men, women, and children are being diagnosed.  Through my blog, I have been emailed by many patients and blessed to walk them through my experiences and learn about theirs. 

About a month ago, I heard about a woman who was saying nausiating things about my motives in sharing this journey with the world.  While this has been part of her nature as long as I have known her, it crushed me.  It felt like falling from a tree and landing flat on my back.  It was always a possibility, but I was still surprised, hurt, and had the air sucked out of my lungs.  It was enough that I had planned on shutting this sight down.  I was back to being the vulnerable little girl who wanted to hide behind walls because I was afraid of what people were going to see.

Then I received an email today from another patient.  I had information that could help her.  I had answers that only a patient could provide, and I was reminded that I am not alone with this disease.  She spoke of the support she has and I was reminded by the many friends, family, and even strangers who have reached out a hand to me in my darkest time.

So the latest update is that the medicine I am taking to increase my blood pressure is not yet helping, but we are not panicking.  We will wait six more weeks and then decide if we will take another route.  The one thing we know is that we will not stop fighting or give up.

Finally explained...

I apologize now for those friends of mine who are bored to tears with medical talk, but I need to update my family and I am hoping to give insight for those readers who are also experiencing autonomic neuropathy. 

Over the last 8 years, my heart has been monitored and checked due to palpitations.  I have been prescribed various medications, but my many doctors never could get a full picture of what was causing the issue.  My last beta blocker was removed when I was put in the hospital with the convulsions three years ago and was diagnosed with the Hashimoto's Encephalopathy.  My blood pressure dropped very low and took days to return to normal.  I have had drops in my blood pressure every time that I have had surgery or procedures done, but it was always presumably caused by the pain medications or dehydration. 

Last year, I had an EKG done during a routine visit that showed Supra Ventricular Arrhythmias.  My heart was adding extra beats.  A cardiologist immediately suggested a pacemaker out of fear that the heart would eventually go into a block and stop beating.  Six months later, he was having seconds thoughts due to the autonomic nature of my disease.

Three weeks ago, I met with a different Cardiatric specialist who ran 8 hours worth of tests.  I was put on a 24 hours monitor, and with G-d's perfect timing, I had my first relapse with convulsions in more than six months.  We knew within days that I have poor return blood pressure in my legs, but as an active woman in my mid thirties...we didn't understand why. 

Today, I returned to get the results from the monitor.  The results showed that when my body is under stress or in a relapse, my heart enters an arrhythmic state, but following an episode, my blood pressure drops dangerously low.  This is why I have had recent fainting spells.  Since the arrhythmias and blood pressure fluctuations are episodic in nature, my Cardiologist knows that it is caused by the autonomic neuropathy. 

The good news is that I will be put on something to increase blood pressure and hopefully, my energy will improve and possibly shorten the length of recovery after an episode.  As the neuropathy progresses, we will monitor and adjust the medications as needed.         

A new lesson...

My 12 year old resembles me in very few ways, but her level of frustration and lack of patience with those who hurt and disappoint is something we share.  Even as a child, I struggled most with Indian Givers.  Clearly, that is not a PC term...but it was the one we used.  It was when someone gave me something, then yanked it away as soon as they saw I was enjoying it!  That has been what I have been feeling the last month...only, I don't have anyone to blame.

My health has been fantastic...all things considering...for the last six months.  My strength had returned and I had not had a major episode in several months.  A friend of mine encouraged me to set a goal...so I set a ridiculous goal of running a half-marathon by the end of the year.  This is a goal that I intend to keep, but I have hit a few hiccups. 

I have had to deal with a few infections and my energy has been less than ideal, but I have continued to train.  You see...what would take most people three months to accomplish, I am prepared to take six months.  One thing about training, is it has forced me to be intentional about everything...rest, nutrition, hydration...all things that I normally gave little thought.  But I have had so much taken away and told what I can't do, that I need something to reach for and to prove that I am a fighter and not as fragile as they think.  

The fatigue has been my greatest challenge, but a sweet friend named Channel  encouraged me to do what I can on the good days, and not to feel bad about resting when I need.  That is something I have taken to heart.  But I hit another obstacle this month...my heart.

I fainted on Mother's Day which pushed me to return to the Cardiologist.   They did a full work up on my heart. While at the office, I had a small relapse with convulsions.  I fainted again that evening. The following two days, I struggled with my motor skills on my left side.  But I was blessed with the chance to spend some down time with my friends in Fredricksburg and then at the river. 

I had previously been told that we might pursue a pacemaker to stabilize my heart rate and rhythm, but I have learned that the Hashimoto's Encephalopathy prevents me from being a candidate.  Surgery and medication would both be too risky due to the episodic nature of the disease.  Today, I learned that my heart is great at pumping blood away from my heart...but my pressure is too low to return the blood back.  The episodes are linked to the auto-immune aspect of the disease.  This explains the fainting and dizzy spells.  We will just do what we can to enable my body to recover quickly.

So once again, I was enjoying my health and progress...then had some of it taken away.  I told a friend today that new news always feels like having the wind taken out of my sails, but I know it cannot take away what I have accomplished.  Two months ago, I led my children to the top of an ancient volcano.  Last month, I began running again.  I will keep fighting and pressing on towards my ridiculous goals:)    

Running the race

As many of you know, I have a team of specialists that I visit on a regular basis.  My own personal Avengers!  The fabulous part is that they all communicate really well together.  They are all at the top of their fields and are often recognized for their advances and "out-of-the-box" way of thinking.

I met with my immunologist a couple of weeks ago and my blood work looked great, with the exception of my antibodies.  They had increased during the time when we had withdrawn treatment, and they have yet to come down. This could be why I have had more symptoms lately.

Two years ago, after having a relapse and experiencing the usual stroke-like symptoms and tremors, my neurologist from the Mayo Clinic explained that because I am still considered young in their field of medicine, she believed my brain would compensate and find new pathways to communicate.  I just needed to give my brain the opportunity.

Last December, I was reminded of this conversation after I began losing the use of my left arm and leg. Those symptoms improved after restarting the immune suppressants, but I was struggling to get back to where I was before I got sick.

With encouragement from my 42 year old Neurologist who runs Iron-mans for fun, I returned to the gym to try to live a normal life.  Six month later, I am running and exercising almost at the level I was before I got sick.  I have even taken on the challenge of running a half marathon on the 1 year anniversary of my last relapse. 

I am constantly reminded though that this is a dance and I am not always leading! I have been unusually tired over the last couple of days, and fighting harder to stay positive.  I learned that my last neurological test of my fine motor skills showed zero improvement, and actually declined slightly despite all the other improvements that I have made.  While my doctors will not speak in definite terms, it does appear that these symptoms will be permanent.  So I will be brutally honest with you all...the last couple of days have been hard. I need to be strong for so many people, but today...I'm not, in fact...I think I am going to crawl back into bed.    

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!