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.