5 years!

I am attempting to post this from my cell phone, which considering my struggles with Fine Motor Skills, this will be a victory in itself if completed. This will be as brief as possible, but I couldn't allow this moment to pass without celebrating.

Five years ago I was diagnosed with Hashimoto's Encephalopathy. For those who are new to this journey with us, it essentially means that my immune system is causing inflammation in my brain. This initially was diagnosed when I developed Parkinson's type convulsions followed by stroke-like symptoms. I had initial success with treatment, but quickly developed complications. At that time, I was informed that there were only a couple dozen accepted diagnoses in the US...ever.  I was told by my amazing team of doctors that no one could tell me what to expect past two years. Most of the known cases had died from suffering massive strokes or comas  due to this disease. A few of the others had died from complications of treatment.  My biggest fears were not being there for my children who were 8 and 10 years old at the time. I was diagnosed and hospitalized on my son's birthday and spent my daughter's birthday at the Mayo Clinic. I started this blog to keep everyone updated while at the Mayo Clinic, but found myself flooded with love and support. Tears are rolling down my face right now as I remember reading the messages from friends, family, and strangers.

Here is my update: Five years ago, I was diagnosed, in shock, devastated, and scared, but I took one day at a time. I rebelled a little and found myself writing my children letters for the events in their lives I would miss.

Four years ago, I had to stop working. I had to accept that my illness was debilitating to the point that I could not do my job as it should be done. Long over due, I passed the reigns to sweet Laurie Wilson who continues to amaze me! I had to start resting often during the day and took a cocktail of medications that treated and made me sick at the same time. I struggled with my identity and purpose and mourned the person I used to be.

Three years ago, I celebrated because I had reached the two year mark after diagnosis, but my medication was no longer suppressing my symptoms. I gradually quit taking my immune suppressants and my encephalopathy began to rage. I had lost hope and began to accept defeat. My doctors did not. They came up with a new treatment plan and I slowly began to recover.

Two years ago, I was stronger and even tried to work again. I limited my hours but it still was ultimately too much. When my health declined, I finally accepted that working was not in my future. I had to limit my stress, activity, and with bone marrow function at almost zero, I had to limit my exposure.

Last year, I gave up the guilt of what my illness had done to my family and celebrated the fact that I was still in their lives. I celebrate the support group of other surviving HE patients I have joined from around the world. I have been blessed to be contacted by dozens of other patients or loved ones of patients through this blog. I have been able to answer questions and give advice. Mostly, I try to give them hope!

It has been five years this week that I was diagnosed. My son turns 13 in a couple of days and I celebrate the precious man he is becoming. My daughter turns 15 next month and I'm celebrating the fact that she has asked to go hiking and star gazing with her tonight...and that I expect to be able to do it. I may not be as strong physically now, but I am inside. My life may not be how I planned, but it is full. Mostly, I am blessed to have so many amazing people in my life. I cannot thank all of you enough!

4 year update

Four years ago, I was diagnosed with an incurable, progressive neuro-endocrine disease after starting to convulse in the lobby of a neurologist's office.  I had been experiencing headaches, hand tremors, difficulty expressing myself and what could only be described as a delay with my motor skills.  Outside of a common thyroid disorder, I was in the best health of my life.  Admitted to the hospital, the convulsions lasted for 14 hours and was followed with stroke-like symptoms.  A few days, many tests, and a trip to the Mayo Clinic confirmed the diagnosis of Hashimoto's Encephalopathy.

At that time, I was told that there were less than a dozen confirmed cases in the United States.  There were not any cases followed for more than two years, so we did not know what to expect.  I was told that the illness would end with a relapse resulting in a massive stroke, coma, or death. 

What has changed in the last four years?  There have been many advances in the knowledge about this disease. I am in a Facebook Support group with patients from all over the world.  Doctors still look at me like I'm a unicorn until they do more research and run tests, but I have quit taking it personally.  Steroids are the common treatment for auto-immune diseases.  However, I now know all steroids are not created equally!  Barry Bonds holds numerous records, while I developed steroid induced diabetes, bone bleaching, insomnia, gained 5 dress sizes, developed something honestly referred to as a Buffalo Hump, and went completely insane!  With the help of immune suppressants, I may have lost bone marrow function...but I shed the steroids, insulin, and weight.  I still don't sleep and I acknowledge that I am a small stack of crazy, but not insane!  One thing I know for certain is that I have an amazing team of doctors, the best friends and family supporting me, and I am so very blessed.  The best news is that this time four years ago, I was packing for Rochester, Minnesota.  This week, I will be packing my swimsuit and sandals for a trip to the Caribbean!

Tomorrow I will meet with my endocrinologist to see if we are able to make a big change...so I will keep you posted if we are successful!  I will meet with my immunologist and neurologist next month.  There may be additional changes made then. 

Always learning...

It has been quite a while since I have been on here to update.  Since I last posted, I joined a support group for Hashimoto's Encephalopathy on facebook.  There were only about 30 of us last time I checked and we are spread across the globe, but it is nice to know there are others out there. 

I learned about other forms of treatments for this disease years ago that the medical community in America had not accepted.  But I have communicated with several in the UK who have actually tried these treatments and some have had success. This may come in handy in a few months.

At the end of February, I was undergoing Neurological Function testing.  The testing targeted a part of my brain that seems to be damaged.  I began to convulse, struggle with speech, and my thought process seemed to almost stop.  My husband helped me to the car where I took additional anti-convulsants and nerve inhibitors.  Within an hour, the convulsions and tremors had stopped.  High dose B-2 and anti-inflammatory meds helped with the migraine.  The next day, I felt like I had a hangover that coffee and aspirin wouldn't cure and weakness on my left side.  I had another episode that was much milder a couple of weeks ago.

While talking about this with my Neurologist yesterday, I just mentioned how my hands curl up and become very weak when the spasms, tremors, and convulsions start.  A light bulb went off with the doctor and he explained that it is CO2 deprivation.  Similar to when someone hyperventilates, through the spasms and convulsions, my breathing patterns are disrupted.  The Carbon Dioxide levels in my blood drop, along with calcium levels.  Simply breathing into a paper bag could reverse this effect.  In the 4 years I have been diagnosed, this is the first time anyone has explained this. 

My doctor also explained to me that he is no longer comfortable with the risk of lymphoma that my anti-rejection meds bring, therefore he wants to try and taper off of them in six months if I remain stable.  I tried this a year and a half ago and had a significant relapse.  That might be a good time to try IVIG (Intravenous immunoglobulin (IVIG) is a blood product administered intravenously) or plasma transfusions.  These had been dismissed by my medical staff because there had not been a large amount of successful case studies done in America, as well as the fact that they are very expensive and most insurance companies will not cover.  These are things to think about over the next six months.

Making a difference...one twitch at a time

(my niece Ashley, sister Elizabeth, mother Jean, sister Stephanie, and me)

I have heard from a couple of you this last week who were concerned that you had not seen an update from me in while.  I am very touched by your thoughts.  Rest assured, this hard headed, ornery gal is still making a dent.  I have been sick and experiencing some pain for a few months.  We began running tests about a month ago and I have been waiting for full results before I explained.  See...that is how I roll.  The control freak in me likes to wait until I have answers and share them when and where I think it is best so that I can protect everyone and shape how they react.  Extreme guilt consumes me when I see people worry or hurt over me.  I know I am not alone...in fact, I come by it naturally.  As a Daddy's girl, I will ask my father how he is doing and he tells me he's fine.  He asks how I am doing, and I tell him I am fine...then we both go ask my mother for the real story! 

Last night, I was with a group of friends driving through a fun place called Santa's Ranch out on Interstate 35 near San Marcos.  They have set up Christmas scenes with millions of lights!  Even the Grinch in me enjoyed the experience, but while we were waiting to get in the gate, I received an email from a young woman that touched my heart.  She had heard my story and reached out because she is experiencing convulsions, tremors, and many other symptoms everyday that I share.  She is not getting proper treatment because she lives in a small town and the doctors are not yet accepting of the Hashimoto's Encephalopathy diagnosis.  She has had to quit work and her husband is filling the role of caregiver.  This blog may have started as a sounding board, but I am proud that it is spreading the word about this disease so that treatment and support of patients will improve.

Here is what I have learned and continue to remind myself of everyday.  As HE patients, we don't always have control over the tremors, convulsions, or motor skills.  With depression, anxiety, and irritability being chief symptoms of this disease, we don't even have control over our emotions.  We will go through all of the stages of grief when diagnosed: denial, anger, guilt...heck, I experience those three daily!  Our loved ones will, too.  The real fun is when you are having a bad day and this triggers a whirlwind of emotions in your usually supportive loved one.  Everyone is feeling terrible, we treat each other in a way that is less than graceful, and it turns into a great big pity party palousa!  It happens...just don't let it last long.  As a patient, we are blessed by those who stick around and bless us with their comfort, love, and support.  Not everyone is built to withstand the load, so celebrate those who choose to share this journey with you.  If you feel alone...know that you are not.  Email me anytime and I am here to answer questions and walk with you.  If you are a loved one of someone with HE...thank you!  There are days that will be hard, but you make a difference that can't be measured.      

How would you answer?

Painting class with my sweet friend Jenny Rudd who encourages me to try even with my twitchy crack hands!

On the way to school the other day, my 11 year old son asked me a question that normally would have torn me apart.  "Mama, since what you have is hereditary, does that mean that Bradie and I have it too?" he calmly asked.  I learned several years ago that my children were experts on eaves dropping and were determined to hear what the rest of the family was whispering about.  My children were often overhearing people ask me how I was feeling and that they were praying for me.  Logan has a huge heart and the built-in desire to protect those around him.  He would take the pieces of information he heard and project a reality that often was much more grim than the reality.  So we talk about my illness openly so that they never feel that we are keeping something from them.  My kids know Hashimoto's Encephalopathy (HE) is extremely rare, but because of this blog, I have been able to share with them about other people with this disease.  The number of living patients I know about has tripled.  I get to celebrate with patients who are taking part in clinical trials and praying for success.  We celebrate every time someone is accurately diagnosed with HE, for the mere fact that doctors are becoming more knowledgeable.  I have even been asked to include my story in a book with stories of other patients.  These people are like teammates to me.  No offense, but we call it Team Twitchy at my house. 

I explained to Logan that though I have an auto-immune disease, that just means they are more likely to develop an auto-immune disease than other people, but there are no guarantees either way.  However, that fact is why I fight as hard as I do as a patient, an advocate, and as a researcher.  If the day comes that one of my children is diagnosed with HE, I want them to know as much as they can.  I also want to set an example for them on how to live with adversity, and not to let adversity be their life.  That is easier said than done, obviously, when I have follow-up appointments with my five specialists and all the lab work required to stay ahead of the game.  My purse sounds like a maraca due to the multitude of medications, but at least we are rocking.  I have cut my hair again due to the fact that it had gotten so thin from my immune suppressants.  I just tell myself that I make bald look good!  HE has killed my balance and coordination, so I look like Jack Sparrow when I walk.  Conveniently, both of my kids are dressing up as pirates this year for Halloween!

Birthdays are a big deal to me.  In the beginning, I praised every holiday and birthday I was part of because we didn't know what the future holds.  Now, I rejoice because I know how blessed I am and will continue to be.  I celebrate my friend's birthdays because I am blessed that God gave them to me.  My friend Raenette says that girls don't just get birthdays, they get a birthday week.  I turn 35 in a couple of weeks.  Someone will have to break the news to my husband who is two days younger than I am!  Maybe we will just party the whole month of November!  I hope everyone will join us!    

Self preservation

Any of you innocently live in denial?  I think most people's instincts would be to storm the question with a no! I will admit friends that I often live in a reality challenged world, and I don't think it is always a bad thing.  Sometimes it is self preservation.  I was asked a question yesterday by a new specialist that is joining our "You want to see something weird" team. (That is what I call my team of doctors.  They are all amazingly talented, at the top of their fields, yet they still act like middle schoolers dissecting their first frog...totally excited!)  She asked how it is that I am able to still get out and exercise with all of my health problems.  The simple truth is that it hasn't ever crossed my mind not to try.  Something inside me instinctively tries to get back to that girl in her 20's who could do it all...in high heels...backwards! I had to laugh yesterday though when we were discussing the medications and the conditions they were treating.  She asked how long I had worked in the medical field!  I explained that I do not work there, but have been a guinea pig there for the last three years! hahaha

Ok...so the new specialist is a Cardiologist who spent the last few years as a heart transplant specialist.  This is pretty perfect for my disease.  Most of the immunosuppressive drugs are actually used as anti-rejection medications for transplants, so she knows the complications of long term use and other options.  She stressed the increased risk of cancers from long term use of my medications and has ordered several screenings.  I am wearing another halter monitor and she will decide whether there is anything additional that we can be doing.

Many of you know that my liver enzymes came back elevated three weeks ago.  This is common with the medication that I am on, but it could also be caused by my immune system working on my liver.  We increased my immune suppressants because of a slight progression in symptoms and my enzymes dropped a little.  Hard to know if that is a result of the increased meds or my liver's own regenerative ability.  We will test again next week before we get excited. If we decide that it is caused by the Imuran, then we will probably return to the Cell-Cept (a much cleaner drug) and add medications to boost its power. 
   

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.