Six years ago, I couldn’t turn on the faucet
I distinctly remember standing in front of the sink, wanting a drink of water and not being able to turn on the faucet. I could certainly reach it, and the faucet was functional, but I still failed to turn it on. I stood staring at it trying to make the connection between the long metal spout and the glass in my hand. I have no idea how long I stood there, but eventually, I made my way back to bed only to have a startling and terrifying moment of clarity about what had just happened.
Six years ago, I spent three months in bed
In between doctors’ appointments, tests, more tests, and more doctors’ appointments, I continued to deteriorate. I was unable to function due to the dizziness and unable to walk without assistance. I could only stand for short periods, and any exertion exponentially rose my blood pressure to dangerous levels. My numbness extended to parts of my arms, legs, and shoulder blades. I had strange sensations of water in my scalp, and my pupils were in a constant state of dilation. I would regularly feel like my skin was on fire and would sweat profusely with no warning. Continued trips to the ER yielded nothing more than a diagnosis of an ear infection or a virus. They weren’t listening, and I was dying. A subsequent MRI showed two benign cysts in my brain. One in the left ventricle and one at the base of my eustachian tube. Despite all of my symptoms, the doctors were convinced the cyst in my eustachian tube was the cause for all of my symptoms and surgery would be scheduled in two weeks. The trips to the ER had become fruitless, as the doctors felt they had their working diagnosis. We were alone; forced to wait it out. In those two weeks, my naps moved from a couple of hours to a half a day, to sixteen or more hours a day, only to be awoken, gasping for air. My husband, not wanting to disturb my rest, would sleep in the guest bedroom but would hesitate at my closed bedroom door in the morning not knowing, when he opened it if I would be alive.
Following the surgery, I felt much better. In retrospect, it was the steroids I had been administered before the surgery. Two days later I plummeted hard, and the search began again.
Six years ago, a doctor called me a liar
One of the most frustrating aspects of this disorder is the quickness of the medical community to assume it’s a mental issue and throw Xanax around like a party favor. If you don’t fit into a nice, neat box, you must be crazy or a liar and ultimately your dismissed. I spent days and days in the hospital only to be released with a “cookie cutter” diagnosis or none at all. I’ve been accused of trying to get disability and basically told I was stressed so go home “little, feeble women” and bake a cake for your husband. When I visited yet another neurologist, I questioned her diagnosis of migraines. She leaned into me, lowered her voice to a whisper, pointed to herself and said in an extremely condescending voice, “I went to school.”
Six years ago, I looked ok
Looking “ok” on the outside doesn’t mean things are ok on the inside. This was and still is a difficult concept for many to understand, and those who suffer from a variety of autoimmune diseases deal with this daily. Although I was able to recover some, for three years I suffered from a plethora of symptoms including widespread pain, dizziness, weakness, verbal issues, numbness, confusion, comprehension difficulties, vision changes, and a constant “flu-like” state. This was worsened by feelings of hopelessness. Without a proper diagnosis, I started to think the doctors were right and I was crazy. Many members of my family never said it, but I know they were thinking the same thing. Many co-workers, and especially my supervisor, began to treat me like I had done something wrong. In their eyes, I was the lump trying to beat the system. They only spoke to me when it was absolutely necessary and did their best to exclude me from anything that could help forward my career. I was the one that everybody whispered about. I suffered in silence and struggled through every day never letting anyone know how I felt, lest they use it against me.
Four years ago, it was time for a change
By this time, I was convinced that no one other than my husband and children were going to advocate for me. However, it impacted us all, and we all felt helpless. I had been to every local neurologist, only to be rejected for further treatment because I dared to question them and refused to be dismissed. My primary physician was very sympathetic but, without a referral to a neurologist, her hands were tied. Therefore, I began to research my symptoms at every opportunity. I was dedicated to determining what was destroying my mind and body. I began to realize that I wouldn’t be able to continue in my current, very physical profession if my symptoms didn’t improve, or worse, if I began to backslide to where I was two years earlier. I was already hiding symptoms from my supervisor at work for fear of reprisal. I would claim something benign like a dentist or eye appointment so I could go home and attempt to scream away the pain. At the office, I would wait for the hallway to clear before leaving my office so no one would see the wobble in my walk as I tried to maintain my balance, or see the deep furrow in my brow as I tried to combat the double vision.
Before I got sick, I had decided I was going to work on my degree but was only one year into the process. I didn’t necessarily need the degree in my current position, but I wanted it as a personal accomplishment for myself. Now it had turned into a necessity. Without a diagnosis, there would be no cure. Without a cure, I had no idea how long I could keep my job. It was, without a doubt, time to broaden my possibilities but how was I going to do this if I couldn’t hold a decent conversation or remember what I had just done the hour before?
Two Years Ago, I Got a Diagnosis
For months, I went down every rabbit hole imaginable trying to discover what this was, but kept running into dead ends. Then, one day I came across Hashimoto’s encephalopathy. Oh my God- this was it! Every symptom fit. The stroke-like symptoms, the cognitive impairment, the psychiatric symptoms, the tremors and so much more. I printed out a stack of information and drove to my doctors’ office with a renewed sense of purpose. She agreed it was a distinct possibility but still ran into dead ends when referring me to the any of the local neurologists. Not to be deterred and armed with new ammunition, I began to research facilities that specialized in this disorder and found one 350 miles away. The referral went in, and within a couple of weeks, I received a call for an appointment.
My first appointment lasted over two hours consisting of neurological exams, psychological exams, physical exams, and a multitude of questions. In the end, my neurologist said, “I’m not sure yet what this is, but we’re going to figure it out together.” Together? That meant I had a voice! All I could do was cry. I wasn’t dismissed, I didn’t get the “eye roll,” I didn’t get a cookie cutter diagnosis, and most importantly, I was believed!
I was admitted into the hospital for three days, placed on IV steroids and underwent more tests, including an MRI, spinal tap and a multitude of blood work. Subsequently, I was diagnosed with Steroid Responsive Autoimmune Encephalopathy and placed on immunosuppressants and other stabilizing medications. I was on my way. There was a path, and I had hope!
May 2018, I Graduated
Due to the nature of my job, I never knew where I might be or for how long so all of my classes had to be online. This, in itself, was already challenging. I figured out rather quickly that my brain didn’t function very well in the evening. Within 30 minutes of computer work, I was already having to read over what I just read several times and 30 more minutes brought on the double vision. The process of reading, comprehending, and delivering a term paper was nothing less than agonizing while I waited for my brain to wake up. It was like being in a constant dream state while your awake but you have to get the job done while looking through the fog and walking past the monsters. Add to this severe headaches, concentration and cognitive issues, and my already challenging effort became a monumental hot mess! I had to formulate a plan that I could live with that could balance my work and school.
Treat it like a job. That was my plan. It couldn’t be an afterthought or when I thought I had time, it had to be scheduled. If my brain didn’t work at 5 pm, then my schedule would begin at 4 am. So, every morning thereafter began at 4 am with a cup of coffee and a book.
As with any job, you look for ways to improve. If I was going to treat my disease like a job, I had to find ways to improve my circumstances. One of the things I struggled with daily was unrelenting pain and had read that exercise helped. I wasn’t sure how trading muscle pain for nerve pain would work, but I was willing to give it a try, and I’m glad I did. Just the act of stretching gave immediate pain relief. I hired a trainer to help with balance and strength and continued to see improvements daily.
Six years ago, I couldn’t turn on a faucet, but there I stood, having refused to give up, standing side by side with my fellow graduates and receiving the distinction of Magna cum Laude.
I still have “those” days, and much of life is still a struggle. However, I chose to work around and work through rather than let this disease win. I chose not to be intimidated by arrogant doctors and to ask the tough questions. I chose to take charge of my health and to be my own best advocate.
The last six years have been a tremendous struggle, but I wouldn’t change a thing. With my family beside me, it showed me a strength in myself I never imagined. Now, with a deep understanding of this disease, I can advocate for others and be the voice for those who have none.
Six years ago, this disease changed my life forever but through struggle came tremendous strength. Don’t let your “faucet” be your end but rather your beginning. Turn your struggle into strength and never, never, ever give up.
International Autoimmune Encephalitis Society (IAES) is a Family/Patient centered organization that assists members from getting a diagnosis through to recovery and the many challenges experienced in their journey.
Driven by the knowledge that “Education is Power”, International Autoimmune Encephalitis Society manages an educational support group for patients diagnosed with Autoimmune Encephalitis and their loved ones, empowering them to be strong self-advocates and advocates that will lead them to best outcomes and recovery. We are the premiere organization leading in these vital roles.