I Lost My Business, Home, and Everything Between — Today Is a “Good” Day, but Autoimmune Is Forever.
Today I woke feeling a bit like my old self. Well, just about 60% of my old self. I call these days “miracles”. I am typing, so that’s something. Life, well it just isn’t what it once was. Not with autoimmune.
I can still remember my first office: pink walls, robot stickers and “design fests” that would keep me up for days on end. I launched WhateverLife.com, a popular website for its time. We were proud of our stats: 3–4 million pageviews a day with 300,000 unique visitors daily coming to learn HTML, CSS, and how to get more creative with tools and programs.
Coding, designing, traveling for shows and interviews — I was up for anything at any time. Going out with friends on a whim? I was in. Hanging out to have drinks and a long night? I never missed it. New collaborations and projects? Couldn’t turn them down. I was alive, I enjoyed life, and I wanted to grab it by the balls. Every. Single. Day. This was me. Was me. And that is still difficult to accept today. But, as my best friend and I say, “We soldier on.”
I remember losing my business, losing my house, my miscarriage, and moving on (as best as I could). I wrote for years as a freelancer and ended up settling in one apartment after another to find that “home” again. I had dreams and aspirations — but something just wasn’t right with my body.
In 2015, I took on a position at an awesome startup in downtown Detroit. I was determined to push aside the physical manifestations of whatever this was. I was lucky enough to essentially have my own bathroom, where I spent plenty of my time getting sick, sweating profusely, reapplying my makeup, and putting a smile back on my face. But my symptoms progressed and some days I found myself unable to get out of bed, working at home. After all, I wanted to be my old self. And I tried. And failed, again.
In The Beginning
In 2009 I began experiencing gastrointestinal issues and I was unable to eat properly. When I tried, I was instantly nauseous and vomiting everything (TMI: down to the bile) as I clung to a toilet most of my days. This was my own personal hell, a state I thought was truly inescapable. “Stress,” everyone said. I denied it. I purchased books on anatomy, the brain, autoimmune disorders, and adrenal/pituitary function. “What is the matter with my body?!” I’d think to myself. I began accepting that maybe it was stress. I was stressed, but hated the fact that maybe, just maybe, this was the cause of all of my problems.
Cue meditation, teas, vitamins, and strict dietary regimens to reduce the chances of any pitfalls I might face. None of this seemed to stop what was happening to me.
Doctors took my blood. My gynecologist reassured me with some giggles that my thyroid levels were fine and I was perfectly normal. Was I crazy? Was I imagining what was happening to my body? Was this psychosomatic? Everyone knows their body, I thought. I knew something was amiss.
In my new apartment(s), I went through periods of vomiting for days., which led to hospital visits for fluids and potassium. Colonoscopies, stomach biopsies, and emergency procedures to have throat abscesses cut. I’ve also been treated for edema in my left leg and foot (which has now spread to my right). Was it my heart? Blood clots? Something is obviously wrong with me.
All I received in return is “Your blood work looks fine. You’re young. You’ll be okay!” or “Look, if there was something wrong with you, we’d treat you for it.” Thanks ER doctor #39287. Being dismissed was my enemy. I despised the feeling that I was unheard. This pushed my mental state to an even lower level. Some days, I couldn’t function. I was so tired and my focus and memory had all but disappeared.
“But You Don’t Look Sick”
This statement is the ultimate dismissal (ask anyone with autoimmune or chronic illness). Along with “You’re so young, how can so many things go wrong with you at once?” As if I had the magical answer and solution. I felt isolated from family and friends.
Because of my interest in neuroscience and medicine in general, I began digging deeper into medical records and previous tests. I joined an array of groups for those who were “chronically ill”. I studied my kidney levels, my lymphocytes dropping, my antibody levels, and my thyroid levels swinging like an automatic overactive pendulum of sorts. It was time to be my own doctor, I discovered. This was too much. My quality of life was falling so fast. So fast that I forgot much of who I was in the past.
This Year (2016)
After I lost my latest position downtown, I felt the failure sink in. Why couldn’t I push through what was happening to me?
I began having severe cognitive issues, memory loss, and painful tremors in my hands that stopped me in my tracks when writing in my journal, filling out deposit slips, and even typing. I can still remember leaving my bank and crying in my car because my handwriting was no longer legible. I had my mom fill it out instead. I was beyond irritated with my loss of memory and the ability to complete a simple task while forgetting what I was doing halfway through the process. I could no longer paint without twitching and a constant reminder that my hands never cease to tremble. My entire life and career goals required me to use my hands. Cue another bout of severe depression and isolation.
“Oh well,” I said at last. “I will do something else. I must.” This was more of a facade, but it was something to go on. I needed to get answers.
And so I did. My entire summer so far this year (2016) has been less about hangouts with friends and family members and more about hangouts with doctors and specialists. Awesome! But this meant progress for me. Losing my job allowed me to get some insurance that gave me the chance to seek out proper specialists. I was determined to get to the bottom of this once and for all.
I was ready to demand tests and ask the right questions. “You’re not the doctor,” my family would say. “You don’t know what you need, the doctors do.” Just a note: If you have a friend or family member who is chronically ill, these notions are extremely hurtful, and honestly, pretty damn offensive.
Don’t get me wrong, some GPs and specialists are wonderful, but that does not mean they all are. With thousands (up to 6,000) new medical studies released daily, it’s understandable they are unaware of many new/rare diseases and treatments at all times. However, we desperately need more autoimmune support care centers and doctors who specialize in understanding a patient’s entire history, not just the most recent test results they receive.
And so it began: cardiologists, nephrologists, neurologists, rheumatologists, endocrinologists, and so on. Endless imaging and blood work that I had demanded myself. Soon, another gynecologist, urologist, and immunologist will be in the works.
Do I Have an Autoimmune Disease?
I began researching autoimmune diseases again in my time alone, generally in a dark cold room. I learned everything I could about diseases from MS, SLE (systemic lupus erythematosus) (Lupus), Hashimoto’s, Graves Disease, Addison’s Disease, Pernicious Anemia, Vasculitis, and Sjögren’s syndrome. I read this article by Meghan O’Rourke from The New Yorker and couldn’t hold back my tears. This was me. Some stranger I’d never met nearly wrote my own story. She states “I got sick the way Hemingway says you go broke: ‘gradually and then suddenly’”.
Boy did that ring a bell.
I joined hundreds of online groups which consisted of mostly women (9/10 cases of these autoimmune diseases affect women). Their symptoms and experiences both scared me and gave me a sense of relief. “Hey, at least we are in this together, right?”
What Is Autoimmune?
If you want the simplified version, Google says autoimmune is “a disease in which the body’s immune system attacks healthy cells.” True.
If you want to understand how it affects between 23.5–50 million people in the US alone, you’ll have to ask each person individually. Having an autoimmune disease likely means you have another 5–7 autoimmune diseases wrapped together, which can be (and is) daunting. And autoimmune affects each person differently. Some experience mostly skin issues, while others experience kidney failure or abnormal heart and lung function. The list goes on.
I explain to my family and friends that autoimmune diseases are similar to looking at a typical venn diagram:
You may have one major autoimmune disease attacking you at a certain point in your life, followed by additional autoimmune diseases that are lying dormant or active (our bodies do attempt to fight these off, but our major autoimmune disease is legitimately attempting to attack the healthy cells simultaneously). These diseases intertwine and overlap with an original autoimmune disease, making symptoms and flare-ups more frequent over time.
As much as 50% of the population has some form of antibodies in their system upon autopsy, meaning it is much more prevalent that we were aware of in the past. This does not mean they have had those genes activated in their bodies throughout the entirety of their lives, triggering symptoms and “flare-ups” as we refer to them today.
However, autoimmune often requires triggers to become active, meaning antibodies are more likely to present themselves when individuals are stressed in combination with environmental factors. “Stress will kill you” is quite relevant with these diseases. Everything from infections and bacteria exposure to stressful situations are capable of activating the genes that trigger autoimmune illnesses and diseases, regardless of age, gender, and race.
When one person has Hashimoto’s, Sjorgens, MS, Pernicious Anemia, Graves, Diabetes #1, or SLE (Lupus) (among the other 100+ autoimmune diseases and tests for them), they often have additional diseases (they love to combine). On average patients with autoimmune take 8–12 medications. And that’s multiple times each day.
I have met many individuals online who have anywhere from 5–9 separate autoimmune diseases. They use oxygen, have brain splints, and are on dialysis. Their skin is covered in rashes, they experience unknown edema, and have heart/lung function issues. This is how autoimmune works. It doesn’t just attack one area of your body; instead, it finds ways to infiltrate everything from your lungs, heart, kidneys, skin, and brain (along with, well, pretty much every other area of your body).
Being Your Own Doctor Is Essential Today, Unfortunately
On average, it takes 6–10 years to be diagnosed with autoimmune (depending on the tests you have had done and whether or not you’re having a “flare-up”). Others have not received a diagnosis ranging from 12–25 years, sadly. Some days, you get your blood drawn and your antibodies aren’t present. The next week, wham — you’re hit with them and they are alive and well, attacking you from the inside out.
This is why there is a lack of understanding with those suffering from autoimmune. It’s not always easy to find specialists who understand autoimmune, or have the ability to seek out these tests as much as possible, especially during a “flare” or “episode”, which are often brought on unexpectedly.
Many individuals I know have had more than 10–12 rheumatologists, neurologists, immunologists, dermatologists, and endocrinologists prior to having one who is willing to compare past blood work and other scans/tests.
So What’s The Problem With Finding a Diagnosis Quicker?
Unfortunately, with the current healthcare system in place and the lack of communication between primary GPs and specialists, it’s difficult to diagnose an autoimmune disease (especially when your doctors see you 10–15 minutes at most, each time). This is why it is imperative to demand tests, ask questions, and acquire the proper referrals. It is also essential to request copies of your records or print them online for some peace of mind.
I use MyChart and MyLucyRecord (available here in the US — please use this to get a complete overview of all of your medical records) to keep track of and monitor your own levels, which gives me more to go on any time I see a new specialist. Pointing out that I had protein in my urine is what made my kidney doctor take my complaints seriously. Yes, I had to dig through stacks of records because, well, let’s face it: it’s highly unlikely your doctor knows your entire past. And if they do, hold onto them. I also take photos of my illness during flares to give all of my physicians a better idea of what is happening internally and externally during these flare-ups (which seem to be relentless these days).
Most patients do not understand the gravity of this, leaving them hopeless and lost for years, if not decades. I’ll be updating with another step-by-step guide to help those in need of answers or the proper path to take in order to get some relief, at the very least.
What Are Flare-Ups and How Do We Avoid Them?
When someone has a “flare-up”, it means we feel everything that our illness or disease has to offer (and that’s no fun). This means avoiding sunlight (photosensitivity is a big one), staying away from inflammatory foods, and for most…sleeping more than the average person. Before all of this, I could run on 6 hours of sleep and still want to keep going late into the night. These days, I find myself sleeping 12–16 hours and still wake with aches, pains, nausea, balance issues, tremors, and irritability.
There are some methods of helping with flares or curbing the flare effect, which I will write about in my next update.
Those painful phrases including “You’re not the doctor, you can’t just demand tests” are no longer a part of my life. That in itself gave me more power to move forward. My friends and family find themselves asking me questions, making me wonder why I didn’t go to med school back when I was 18.
This wasn’t the summer of my dreams, but the day I received my first real diagnosis allowed me to grin from ear to ear...for a little while, at least. Hashimoto’s thyroiditis autoimmune. Okay, phew. I have a lead, finally. I can handle this. I was told in the past I likely have Addison’s Disease, but had no insurance to follow up.
That in itself, I thought, was my only issue and maybe I could fix it with a tiny pill or two. I could continue to write and collaborate with an old partner I’ve known for nearly 10 years working on a wonderful brand called Lucky Soul. I wanted to contribute again, immediately. Screw this disease — I wanted to still be me. Every. Single. Day. Again. Well, turns out I was wrong about those possibilities (for now).
Hearing my doctors say my symptoms still appear identical to SLE (Lupus) is (was), also eye-opening to say the least. I’m two points away from officially being an individual with “Lupus” — Which is unfortunately not at all unique (and quite sad) considering the women I’ve met in the last year or so. More blood work and testing to follow for as many months as it takes. I’ve also been anemic since 2008 (regardless of diet), which should have been looked at for years since all of this began. Some have been waiting 12 years, 20 years, or just six (I’m at year seven myself) to get a diagnosis. We all hope for better testing and for those around us to have a better understanding of what this does to our immune system over time.
Testing for antibodies always varies. Your immune system fights against these diseases, but, over time, can no longer do so. You may visit a rheumatologist once or twice a year and each time your antibodies come back negative. Yet, you still feel like hell. Others test monthly, especially during flares in order to get a faster, more reliable sense of how their bodies work and respond to white blood cells and antibodies altogether. But don’t get me started on the state of our healthcare and insurance industry…another time, another post.
This is a common misconception thought of by many who do or don’t have autoimmune themselves, in addition to doctors around the world. 2/3 of the doctors in the US alone do not understand autoimmune or how to treat it (according to the American Association of Doctors). That in itself is scary enough. There is however, one place that specializes in autoimmune, but it is located in Israel — not the best location for those in the US.
Today, I am fighting each morning, noon, and night. The painful hand tremors have spread to both hands, arms, and have now reached my legs and feet. “Peripheral neuropathy” (which is definitely possible, too) was a first diagnosis for this from an ER doctor, so I took it with a grain of salt. I’ve also been told that my immune system is attacking the nerve fibers in my body, something that is irreversible. I hope this isn’t the case; nerve pain is the worst.
Some days, my entire left side is numb including my fingers and toes. Nausea is my second companion. Most days I feel as if someone is sitting on me. Lifting my limbs feels as if I am at the gym trying to compete with an athlete. My memory loss is beyond me, along with my basic executive brain function and cognitive abilities. I have forgotten my pin on my phone numerous times, feeling as if I am incapable of just about anything.
I’ve used a cane for balance as my legs have weakened (on horrible days), though I find myself grabbing counter tops , the siding of pools, and anything I can get my hands on to ensure I do not fall. Each step and breath I take is now conscious. I cannot breathe in humidity, can no longer take deep breaths without sharp pains, or swim underwater (one of my favorite things about summer).
My kidney levels are dropping and I am nearing CKD (chronic kidney disease). I have IC (interstitial cystitis), meaning my bladder fills within 5–10 minutes each day when I am in a “flare-up”. I cannot eat as I used to in the past and have recently been diagnosed with Tachycardia after wearing a holter monitor. My heart beats at nearly 100–166 when at rest (not around 60 as preferred, given my Tachycardia). There are points where I have water in my lungs (on to the lung specialist I go).
I get skin rashes and bruise up and down (we’re talking 20–40 bruises a day when in a flare). My chest pounds and I cannot tolerate heat. I eat 1200–1350 calories a day and while I gain weight, slowly (though I finally began a regimen of Armour Thyroid in attempts to fix some of my issues). My bowels are now distended and I oftentimes do not have control over my bladder. My hair was once thick, and now comes out in clumps incessantly.
Once, I was embarrassed. Then I said, “Fuck it, other people need to know and understand this.” I have nodules and cysts in my thyroid and lymphadenopathy now after a multitude of CT scans and ultrasounds. My doctors are now treating the thyroid autoimmune along with treatments for Lupus/anemia/heart function. I’m still awaiting a kidney ultrasound and results.
Two of my doctors (one specialist and my wonderful GP) are now testing for mold and various allergies. After this, it’s off to an immunologist and U of M (due to the tremors and nerve issues not being related to my Hashimoto’s or even Lupus symptoms).
Today, The Day After I Began This Post
I received the results. Positive for mold allergens, the kind in my former apartment. I spotted the mold after leaving the apartment and discovering it is, in fact, covered in mold under the sink and inside the shower (I had been staying with my parents for a few months). I took photos as I believe this is entirely unacceptable. An older couple who lived next door to me were told to go live in a motel for two months to “detox” at their expense…My uncle (and neighbor) recently passed away (49) and was in perfect health his entire life. His decline only took a few months when he began having respiratory issues and malfunctions, only to later discover that he, too, had mold throughout his apartment.
The exposure to mold surely didn’t help the already “clinging to life” immune system I have, driving me into a deeper hole with nearly non-stop “flares”. Now onto that immunologist and off to U of M to detox as they are entirely unsure of why these tremors are occurring and spreading (after brain scans and full lumbar MRIs). I had noticed I was coughing non-stop this past fall/winter from living there. Coughing up black spots/strings, wheezing, and coughing consistently through the night according to a boyfriend and my parents.
I am constantly nauseous, although that in itself has become normal to me after seven years of awaiting a diagnosis. That, I can handle. All of this, no, I never imagined. I used to say, “All I need is my mind.” I didn’t mean it that literally.
Accepting you have autoimmune is one thing. Allowing myself to sulk in it, well, it’s just not who I am. If I can help just one person, I’ve done my job.
Autoimmune Is Forever, and I Know That Now
It has taken me a few weeks/months/years to accept that this is forever, although I wasn’t oblivious to that fact prior to further progress. It does not mean I do not feel upset, depressed, or lost with this moving forward (and still do, at times). I only now better understand how the thousands of people I’ve connected to feel. Sometimes, their partners leave them and their kids are upset that they are incapable of “normal function”, leading to more isolation and alienation. Some lose all of their hair, spend countless days in hospitals, and are now on oxygen at home for malfunctioning lungs and hearts. Infections after infections — we just want our bodies back. And that isn’t possible anymore.
Yesterday I felt on top of the world ; I had energy and I could walk with minimal pain. I smiled more and wanted to be outdoors. Today, I’d be happy sitting in a recliner catching up on shows…but I do not want that to keep me simply content. I must move forward with this, at all costs.
I am determined to change the stigma regarding chronic illness and autoimmune, by whatever means possible. I’ve created my own blog (SickNotDead — I thought it was a fitting name) to shed light on the situation for family, friends, and even those who do have chronic illnesses/autoimmune. I apologize in advance that this has not been fully updated. Soon, there will be guides and how-to’s to take the steps necessary to get you in the right direction, as well as stories from those who have chronic illness and autoimmune.
Hospital visits, doctor trips, trying new medications, sleeping, and discovering new symptoms keeps me from my computer and phone most days. But I’m not giving up (or in) with this.
Someday I hope to grab life by the balls again. I never said this was going to be easy. To wake and feel like myself again (whoever that is, really). I may also be done searching for that person from the past, as this has shaped me into something new, something more. Sure, I enjoyed coding, programming, and running a business/freelancing, but I also believe that sometimes in life we are left with an purpose that is unexpected, yet necessary.
I will never be the same as I once was, and that’s okay. I still love to cook and bake (when possible), have a dark sense of humor, love witty people, and enjoy a nice night out with friends at times. I follow the best series on television when possible, and work whenever feasible with much more vigor and joy than I used to have(it can be a rarity these days). I’ve learned to listen to my body now more than ever.
I will continue to shed light on this with thousands of others who simply want their relatives and friends to listen. I will connect with physicians and doctors from around the world to create something bigger than we are (there is such a lack of support for those with any form of autoimmune disease/chronic illness).
But, we are in this together, no matter how alone we feel at times. We can fight this. I dream of the day I can join in on spontaneous adventures again and still have a craving to see the world. We are not being “lazy”, and we will not apologize for the good days our bodies allow us to enjoy. And we’d love for you to better understand us. That is all.
“The only way to make sense out of change is to plunge into it, move with it, and join the dance.” — Alan Watts