Given she has a number of autoimmune conditions we’ve not covered on this website before, I thought it would be great to invite her along for a chat. Little did I know that it would be one of the most eye-opening and inspiring stories I would hear in my time of running this site.
I hope you find it as interesting as I did and a massive thank you to Nanci for being so candid.
Introduce yourself to our readers
Hello! My name is Nanci. I’ve somehow reached 62 though it seems I was a high school cheerleader just last year. My own children are now older than me.
Career-wise, I was in the aesthetics industry for 30+ years. I started as a free-lance make-up artist, moved in to retail, then began managing med-spas, and finally became a plastic surgery consultant. No, I never got a lift but only because medical got in the way.
I was born in Southern California with the love of horses in my blood. I received my first real horse around age 10 and that was it. I’ve had them in my life, most of my life, ever since. Before I got sick I worked full-time and was a fitness fan and Paleoite. I strength-trained, did cardio, power-walked with my dogs, hiked in raw mountains when I lived there (no concrete trails with rails), and mucked my horse’s corral. I was also born to physically move and I did. Some would say I was antsy, others that I was disciplined. Either way, it felt good and I needed it.
If you wouldn’t mind disclosing, can you tell us a little bit about your chronic illness(es)?
I have an Autoimmune Disease Cluster or Autoimmune Syndrome as some physicians call it. I’ve been diagnosed with Autoimmune Encephalitis, Lupus (SLE), Sjogren’s Syndrome, Hashimoto’s Thyroiditis, Lichen Planus, Rheumatoid Arthritis, and Inflammatory Arthritis. My first diagnosis was the thyroid disease at age 32. I was textbook in my symptoms, had a great doctor, received the right strength of HRT from the get-go, then went on my way. My next diagnosis of Lichen Planus came in about 2008, Lupus came in 2010, Sjogren’s in 2012, Encephalitis in 2014, and RA in 2016. Inflammatory Arthritis was called in 2018.
I was “lucky” in that all of the diagnoses came easily though I never suffered much from any of them until Encephalitis. I would pass off random days of mild malaise to “a bug” or just “off my game”. It wasn’t until later that I found out those incidents were autoimmune related. Over the years I did have incidents which hospitalized me though a source for the problem(s) was never found and once I recovered, off I went. I was clueless. I didn’t even know Hashimoto’s Thyroiditis was an autoimmune condition. When the others came I just thought to myself what strange names these were but never looked in to the diseases further since I was generally feeling healthy and fit. Oddly, once I began treatment, classic symptoms of each disease manifested dramatically and I don’t understand why.
As a result of these diseases I sustained brain damage, neuromuscular damage, lung damage, kidney damage, joint and tendon damage. When my body becomes inflamed, my heart gets involved as well, and when encephalitis hits, I not only have a miserable head to contend with, I have symptoms of dysautonomia.
Could you tell us about your diagnosis?
Encephalitis is the condition which upended my world. The symptoms manifested in Fall of 2011. I had total vision loss in my right eye, sudden erratic blood pressure, arrhythmia, paralysis, migrating neuralgia, tremors, muscle spasms, loss of balance, right ear hearing damage, visual disturbance and damage, and absences seizures. Brain disease causes me to get very drowsy and weak. The brain is our motherboard and when it’s damaged, the whole body goes awry. It was the most frightening, disturbing situation I’ve encountered without having any reasons why it was happening, for 3 years. The doctors at that time felt I was having strokes or TIAs. One surgeon wanted to operate on my cervical spine but my guts said NO! Autoimmune disease was never a consideration though I mentioned that I do have them. Autoimmune Encephalitis is very rare and life threatening so most doctors have never heard of it.
I just carried on the best I could, taking medications that were making me worse, continuing to work and manage all home obligations until I bottomed out. I was very disconnected mentally, as if watching myself from another place. When I told my orthopedic surgeon that “my legs won’t obey my brain” and asked him if a shoulder injury would cause my entire arm to become temporarily paralyzed, he exclaimed with wide eyes and urgency that this was a BRAIN PROBLEM and to see a neurologist stat.
But I did not. At that point something else had taken over and life was surreal. I lived alone, and still do, so I didn’t have another body in the house to point me in the direction of help or tell me how awful I looked and sounded. I called myself a Cyborg. But two weeks after the orthopedic surgeon’s orders I ended up in the hospital.
Because the hospital neurologist wouldn’t accept me as a patient after my release, I had to hunt on my own. The neurology clinic I found saw me within a few days and began diagnostics. I was fortunate that the primary neurologist was familiar with and had studied Autoimmune Encephalitis with the top specialist worldwide. By this time I was walking close to my dirt nap but within 2 weeks I had been diagnosed and urgent treatment began. This doctor saved my life.
I love your Facebook blog, My Autoimmune Adventures. Tell us a little bit about that?
Soon after I was diagnosed, through the fog and chaos that was now my brain, I began writing my blog on Facebook to a party of one. I used to love to write and draw and do everything creative, but all of those skills were gone except a bit of writing skill. But it didn’t matter. I needed to get the trauma of my experience out of my system by writing as I had no one to talk to about it other than the doctors (who have no time for talking), and I didn’t want to burden anybody in my family, except my pets who actually were my saving grace.
I wake up without ambition and go to sleep without accomplishment
Honestly, at that time, I don’t even know how much sense I was making. I had episodes of “word salad”, aphasia, absence seizures which would last hours sometimes. I’d sit at the computer to type an entry then off I would go in to outer space only to snap back and hour or two later. But I kept pushing forward, telling my story as it unfolded, and still do to this day. I’ve never looked back to see how I was then but one day I will. I doubt I’ll recognize myself.
Was there a single event or reason that made you start journaling your personal experiences?
My writing was completely spontaneous. No one or nothing compelled me to write. But history is the best resource and having once loved to write in general, I knew it would be cathartic to spill my guts out loud, so to speak. I wanted to tell the world about this madness! I knew there had to be others. And as I wrote I learned not only about autoimmune encephalitis but autoimmune disease in general. I found others like me. I discovered how kind and interested healthy people are in this underbelly of the medical world. Eventually I wanted to educate and create awareness.
If you could give one piece of advice to somebody newly diagnosed, what would it be?
Wow. Advice to the newly diagnosed. First, know you are not alone. Find others like you. Educate yourself on your condition! (If I have to pick one that would be it. Do not rely solely upon the doctors for everything. A patient MUST be proactive!). Set up your patient portals and learn to understand your lab results and diagnostic results. Join support groups which are helpful but do not dwell in them. (Even support groups have cliques that can be tiresome and members who do not seem to want to move forward in life which will bring you down). Eventually you will want to create your life, your way, with your level of illness. Find your way to acknowledgment and acceptance of your unwanted “companion”. Love yourself. Be kind to yourself. Get a therapist, especially one who specializes in chronic illness. This is one piece of advice with many components, isn’t it?
Through your journey to diagnosis, is there anything you would have done differently?
Would I have done anything differently? Another tough one. Looking back I think my situation was handled as good as it could be. Although my husband and I are long-separated and divorcing, we are still friends. When he realized how very sick I was, he got involved. He’s very smart, very logical, and very rational and I needed that. He went to every single encephalitis-related appointment with me otherwise I never would’ve made it as there were times I couldn’t understand language. And the commuting made matters worse. He took charge of the doctors’ relationship with me and prevented me from running amok in conversation. Rheumatology is incredibly complex so I would strongly urge a patient with any autoimmune condition to have a level-headed companion at every appointment to take notes, reaffirm what the doctor said, understand the process, and be able to reassure the patient later when emotions can run wild. (With encephalitis I need a neurologist and rheumatologist so it got extra sticky at times.) We look back and discuss what we could have done differently. We learned a lot. Many physician errors were made which cost me a lot, but we just kept forging ahead.
It’s a difficult time for everyone at the moment but I know a lot of JoelvsArthritis readers are feeling especially isolated as routine appointments have been cancelled to tackle COVID-19. Do you have any advice or perhaps a message for those in isolation with autoimmune conditions?
My life hasn’t changed a whole lot since COVID-19. Honestly! I’m disabled from brain, nerve and muscle damage. I have fatigue from all the diseases combined and a special kind of drowsiness from brain disease. Although I was still managing to saddle up and ride a little until 2016, I’ve been more or less housebound. But being a nature lover I take myself on “health walks” to breathe fresh air and see any kind of nature I can lay my eyes on.
Find your way to acknowledgment and acceptance of your unwanted “companion”
Naturally, though I loved socializing at big galas (back in the day), I’m a loner at heart. I’m pretty good at keeping myself company. Frontal lobe damage diminishes the capacity for ambition making accomplishments nearly impossible to reach. The desire could be there but the ability is lacking. I’m learning to adjust. My go to motto is “Be Prudent Without Being Paranoid”. Those of us on immunosuppression must be aware at all times. Now we have to be aware of yet another virus. Despite the frenzy, my state-of-mind is the same. I stay abreast of the news without becoming addicted, I practice every precaution, I say a little prayer, then move on. I don’t feel a particular fear as I’ve already been very, very ill in the course of this disease. I try not to dwell on things out of my control.
What are your plans or hopes for the future, either with your Facebook page or in general?
My plans are to move the hell out of this senior community which was by far the worst decision made on this journey of mine. I lived on horse property in the High Desert, far away from my specialists. After a few years we concluded I would be better off if I moved closer to them and family. But it was not better. As a matter of fact I’ve had more negatives here than at any time in the last 9 years combined and that’s a whole other rotten story. I’m most comfortable in wide-open space so I’m moving back to that, but maybe in a different state near my daughter. I’m grappling with some emotional issues over my physical condition and where I expected to be at this time in my life, but I think I’m getting closer to making a solid decision. I would like to rescue an old horse to be my buddy and ride again. That is my goal.
How can people find you to follow your story?
I’m only active on Facebook, under “My Autoimmune Adventures” or @mytwistedsystem. I welcome comments and messages of all sorts. It’s a public page. I have quite a collection of photos of a variety of symptoms from the various autoimmune diseases I have plus videos. I post EVERYTHING related to my disease, including surgery photos some might find unpleasant. But if it’s my reality, it goes on my Page!