Autoimmune Disorder: From The Worst Thing That Ever Happened To Me To The Best
I suppose the idea of writing my story came to me in the last year or two when the few friends I had left were enjoying the fruits of their labors-travel, career, financial security, grandchildren-a niche to call their own. I was alone, surviving day by day, and getting sicker and sicker.
I had spent the bulk of the last 10 years undergoing multiple diagnostic tests, labs, scans, medications, and therapies and seeing multiple paternalist, rolling-eyed physicians and specialists to which I repeatedly told my tales of woe. The search was at times, illuminating and hopeful, at other times, increasingly deflating, tedious, nerve-wracking, demeaning, expensive, and lonely.
It was better, though, than being left to deal with the kind of pain that the doctors labeled “chronic” or “diffuse;” the kind of day in and day out bone, muscle, and nerve pain that can wear you down to a shadow of your former self and break you, regardless of what one calls it. The pain got so intense, even laying on the sheets in bed at night caused excruciating pain. I would stay up as late as possible until I was as exhausted as I could get, then prop myself up on pillows to get a couple hours worth of sleep. Some nights sleep didn’t come at all. I would lay awake all night wondering if the pain would ever go away, or if I did close my eyes, if I would ever wake up.
My whole body seemed to be under attack. I lost my a lot of my hair. I had no energy, I couldn’t concentrate, or focus. I lost stamina. I was anxious, edgy and lost my patience easily. Lest I be accused of being a glass half-empty kind of gal, let’s not leave out what I gained-weight and gas-the kind of bloat that makes people lacking internal censors ask questions like “When are you due?” Groovy. Then there were the flop sweats-nuclear meltdowns that necessitated bringing prophylactics (talcum powder, deodorant, a change of clothes) to every occasion. In addition to heat issues, there was also cold sensitivity. Even a drop of a few degrees would bring discolor, pain and tingling in my hands and feet. Pretty soon, other than going to work, it was easier to avoid going outside altogether.
Mostly though, I was TIRED and not the kind of tired one feels from a long day or even a long, week. It was the kind of fatigue that makes one wonder whether one is living at all. I couldn’t take a shower and brush my teeth without having to lie down for a half hour to rest. I couldn’t walk grocery store aisles or stand at the kitchen counter long enough to prepare and cook my meals. Pretty soon, I had cut out all non-essential activities just so I would have the energy to make it to work. I was DEAD, DOG, TIRED, in William Shatner caps with Christopher Walken commas. Pretty soon, I couldn’t work at all.
So, how did I cope? In Shalken Speak, I, WAS, PISSED! I was angry at that the endless list of medical professionals who couldn’t give me a diagnosis that made sense, didn’t listen, or dismissed me with a scribble or two on their prescription pad. I was angry at family and friends who became inpatient or suspicious of my bizarre set of symptoms, lack of energy, mental fog, and frequent social event cancellations, or would tell me to “stop being negative” and “look at the bright side.” I was angry at coworkers and bosses whom I felt I couldn’t tell about my struggle for fear of losing my job. Some that I did tell in vulnerable moments gossiped with coworkers or used it against me, and I ended up losing my job anyway.
Mostly though, I was angry at myself that I couldn’t somehow overcome it, despite everything I’d tried. I’d always been the “strong one” everyone looked to in troubled times. I had never come across a problem I couldn’t fix with a little more thought or hard work. Increasingly, I began to think of myself like an imposter, even a failure. Where had that strong person gone?
After some years of living this way, slowly I began to make progress in finding out the sources of my misery. The first diagnoses were chronic fatigue syndrome, obstructive sleep apnea, and fibromyalgia. I was hopeful. At last I had an identified enemy I could fight! As it happened, that period of time turned out to be only the first battle in a much larger war.
After a couple years and despite multiple treatment plans and handfuls of drugs, I was making no progress, in fact, I was getting worse. The CPAP machine I had to wear at night didn’t seem to help the chronic fatigue and mental fog. The drugs didn’t relieve my pain, and in some cases, caused even more debility than the symptoms they were meant to relieve. Frustrated and deflated, I resumed the search for answers.
I found a doctor who was recommended by a fibromyalgia website-a rheumatologist. She called fibromyalgia a “secondary syndrome” and suspected a much larger, systemic issue was lying beneath. After a few months of extensive lab work, she rolled out the first of many diagnoses-rheumatoid arthritis. Over the next few visits, other diagnoses followed-Hashimoto’s thyroiditis, sicca syndrome, and Raynaud’s disease just to mention a few. I didn’t understand it all back then, but the systemic autoimmune response was the true enemy I had to fight in that much larger war.
So there’s a brief synopsis of some of the worst parts of being ill with autoimmune disorders, at least for me. No doubt those years were the worst of my life and made me question everything I believed about myself and my ability navigate life’s challenges, but navigate I did somehow, and I’m STILL HERE.
While I am by no means cured, most days, (in Shalken Speak,) I’m SO, MUCH, BETTER. With the support of many people who were suffering and searching just like me, I have found ways to alter my diet, lifestyle, and even thinking to help me to control my symptoms and how I cope with them. I’ve eliminated the need for all but a few crucial medications. I’ve even eliminated the toxic behaviors, people, and things that I have come to realize had infected me throughout my life just as the autoimmune disorders did, and I’ve found happiness I’d never thought possible.
I now have a profound self love and gratitude I never knew existed. Not completely unlike the platitudes that others would casually throw out, I now understand that there are millions of people all over the world who do have it much worse than I do. Truly embracing this gratitude was neither a short nor an easy process, but a powerful one that has freed me in more ways than I can possibly describe. Not only do I have the control back over my life that I thought I’d never have again, I have begun the process of building an even BETTER LIFE- the one that I always wanted.
So that’s where I am now, and I’m so excited to see where this path will lead me. I’m still a work in progress. I can’t claim to know all the answers about how to cope with these or other chronic illnesses and stresses they bring that are unique to each person in their lives. This blog series won’ t be a “how-to” on how to heal yourself from autoimmune disorders or fibromyalgia. What I can do, however, is share what I’ve learned in my own journey in which I began to realize that even in suffering there’s beauty, hope, healing, humor, and perhaps most importantly, GROWTH. These are the things that in my mind, make life truly worth living.
So, if you’d like to join me in this ongoing journey, please do. I hope that in some small way sharing what I’ve learned may help illuminate your path to find answers and craft the life you’ve always dreamed of. If any piece of my story resonates with you, please feel free to comment and share.