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.    

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!         

"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.