The Day My Body Pushed Back (Pt. 2)
Updated: Dec 2, 2019
Well we ended off with the neurologist doing biopsies and eeg's and all sort of tests for me. I have to add she did to a spinal tap also as that did not show anything. My symptoms were getting worse. One time my son in law was telling me something and all I could hear was, "blah, blah, blah." Another time I was visiting my daughter and her husband in Iowa and we were out to eat- I can just see it in my minds eye. We were at the Cheese Factory all at the table, they were all talking and having a great time. I was so flooded by the conversation, I was so confused on what everyone was saying that if they talked to me, I just smiled, like I knew what was going on. This scared the heck out of me. That takes a lot to do.
Shortly after that my husband got so severe from the drinking he ended up in ICU almost dead from liver failure. He came home with a promise to stop. That never happened, just to say. My mom was getting worse. Hallucinations, calling in the middle of the night needing me. I love my mom, but I was so exhausted. I had her getting aid from the state to help her stay in her home, but they were calling me constantly reporting things she was or was not doing. I was getting worse through this time.
At work before I left, my personality changed. I would blurt out things I would never had said, I had no remorse. I found I had no empathy left in me, I was numb to myself and others. My feelings were lost (I think this was one of the hardest parts of the disease). I was forgetting and saying off the wall things. It is a good thing I quit my job at the advice of my neurologist or I could have been fired and I never in my life had been fired from a job. That I think would have killed me. Quitting my job put us in such financial ruin. My husband's absence from work due to his drinking and me not working because of my illness we had to file for bankruptcy. Now I do not tell too many people this fact as I am still embarrassed of this. But I am doing so for others to see that I understand.
I was now bogged down with school loans also (OH MY) and had to quit that also with just a few credits away from graduating with honors. One more disappointment.
My head hurt constantly, ached, numb, hard to explain. Sometimes it felt like there were electrical shocks going through it, sometimes like I had a pony tail pulled too tight. Sometimes like my skull had fallen asleep it was numb. Sometimes just a plain old headache nothing helped to get rid of.
Onward to the HE diagnosis. My neurologist advised me to get another opinion as there was so much going on within my body. She at that time wanted me to go to Mayo (However since does then she does not recommend Mayo anymore). Well insurance would not cover Mayo, so I went to the Medical University in Chicago to a scleroderma expert and a neurologist for a work up. All they did was read my records and never ever looked at me, ( I often wonder why we have to be there if that is all they do for a second opinion). The one test they did was my thyroid antibodies, for which had never been done. My TPO was way over 1200. When I went back to my own neurologist, she took a look and repeated the antibody test again and said, "That’s it Susie, I figured it out! You have Hashimoto’s Encephalitis!" By that time, it was called encephalopathy. "Well what the heck is that?" I thought. I looked it up, I googled it, I searched books for it- nothing. But, one article came up written years ago. It told me a few things I did not know, one that it was rare.
Once again, I am rare. (LOL). I did finally find a group on "Inspire" that talked about encephalitis, and found one person- yes just one. This was in 2011, I was diagnosed in November. This other person was also diagnosed around the same time as I. Her name was Nicola Nelson, a retired attorney from Chicago. We compared notes. There is nothing like finding someone like yourself and knowing your not alone in the world.
I had at this time 5 rounds of high dose Solumedrol steroids by IV infusion. I went home with a tapering dose that I thought would kill me. I felt worst than I ever did in my life coming off that medicine. I was still on Imuran which I forgot to add. I was put on this by my rheumatologist after the other autoimmune diseases started to show up. So I have been on Imuran since 2010 with doses going up and down according to relapse and symptoms. This all seemed fine for a while. I felt better, I was not walking into walls as much, I made it through door ways!
But then, February 24, 2012 came around. This is after my diagnose in Nov of 2011. We were woken up at 2:00 am in the morning to pounding on our door on the main floor... our home was on fire. We barely made it out the door before the whole home was up in flames. Everything was a total loss. I got out in my night gown period. Nothing else was saved. I say HE actually helped me at this time as with no emotions and the numbness, it helped me not to feel so deep at this great loss. I still think I have not relived this tragedy. I still think it is coming for me. But at that point I felt nothing.
At about the same time Nicola and I talked, I told her about my idea of writing a book on HE. I said there was nothing out there for people like us, how does anyone know what to expect? So at the advice of my oldest son, we formed a non-profit. With the grace of God and the help from Nicola's old firm, we started our first book. We paid for the majority of it ourselves and had an HE fundraiser done with recipe books to sell. But it was so hard as nobody ever heard of HE. How do you get people to donate to something that is rare and unheard of? I was told at time of my diagnosis that there were around 200 patients in the world with HE. That figure has been proven wrong in the last few years. So, Nicola being newly diagnosed and myself newly diagnosed we started on our non profit and our book. We formed a Facebook group. We gathered stories from others who had been diagnosed with HE and asked them to write stories of their journeys so others could read them and know they were not alone. This is where our non-profit Hashimoto’s Encephalopathy (SREAT) Alliance (HESA) for short was born.
OK now back from the commercial break. My mom before the Christmas of diagnosis was placed into a long term care facility for dementia and was not doing well. It broke my heart, but I was not well enough to take care of her, myself, and my husband. My heart broke permanently when she passed away 3 weeks after our home burned down. I thought I could not take anymore; but one can. Once again I believe HE got me through it with no emotions, I hate to say that, but silver lining maybe? I do not know how I could have handled it all in my normal empathetic way of dealing with things. Since then my feelings and empathy have returned, but I look back at that time of life and just wonder. During that period I was getting electrical shocks through out my body, sometimes from toes to head, like a lightning bolt had hit me. Dam, it hurt. I would also get the creepy crawlies under my skin of my legs, I told the doctors it was like an "X- File" episode of things crawling under people’s skin. I had weird sensations all over my body, the weakness was getting worse. I had relapses of HE here and there. Then given a one or two day dose of high IV steroids in the hospital with tapering dose of steroids to help. But there was still more to come. I was soon to be diagnosed with diffuse Sjogrens disease which was attacking my internal organs. Also diagnosed with esophagus strictures and had my esophagus dilated three times. I could hardly swallow water. The next thing on the autoimmune list was my hearing. I was diagnosed with a very rare autoimmune inner ear hearing loss. My hearing would go in and out like a volume control on a TV. I had hearing aids to begin with, but this made it even harder. This can cause dizziness so keep in mind it is not alwasy from HE. I was also diagnosed with small fiber neuropathy by a punch biopsy which is a very simple test. It helped explain some of the weakness and the balance issues that I still have. This is a painful condition I will have to admit.
It has been since 2011 I have been diagnosed with HE, but my life did not end, it began a new chapter. My role as Executive Director of HESA has given me a purpose in my life. You members also give me a purpose in my life. I still have headaches every day, some not so bad yet some awful. I have daily pain, but I will survive. I cannot walk well at all, I get flooding very easy and I am still treated with IVIG and Imuran (I have tried others- Methotrexate, Cellcept, to name a few). But that combination seems the best for me for all that is going on. HESA has written its second book available on Amazon with doctor interviews on autoimmune encephalitis. We put on a symposium about AE in New York City last April with help of other non profits. We jad famous speakers which are available on You Tube and our website here at hesaonline.info. We were again so blessed. We hope to plan another for 2020. Watch for details! We have a great social media following which in hopes people get educated on HE- that is HESA goal.
Personally, I am presently living with my daughter and her husband bless their hearts, as my husband is now at end stage alcoholism. If you do not know what that is, you do not want to know. My doctors for years have told me to lessen the stress and to move away but I could never do it. (Told you the empathy was back) Now however, I just knew it was the right time. HESA has so much going on we have such wonderful memberships, we have great volunteers. No one in HESA gets paid, we are all volunteers. There is so much talent among all.
There is so much to be thankful for I would not know where to begin. I feel blessed every single day. HESA would like your ideas on up coming events and ideas on fundraisers as we want to donate directly to two doctors that we know are researching as I speak here on HE. Not any other AE- just HE that is what we need. But they do need help. I am trying. So for now, let me end with this. I love you all very much, you are my family, each and everyone of you. I am here anytime you need me or want a shoulder. Believe me I have been through it all. (Oh yes I still walk into doors LOL!)
Love, Susie