Navigating Autoimmune Disease – Lupus Markers, Labs, Symptoms & the Unknown.

The short version would be that 9 months ago I woke up, felt like I had the flu, dubbed Head Above Water as my life anthem, and knew I needed to get checked out.

The longer version – the version I will be word shpilling today – is that in 4 years, I have not felt fully like myself. Aside from my closest circle/primary healthcare providers and coach, I’ve never really talked about it and kept it otherwise private. Part of me wants it to remain private and more hidden. Often times I prefer to keep it that way, as I don’t want to seem fragile or as though my entire life is somehow ruled by it.

But the other half of me feels completely inauthentic in doing that. Integrity is my #1 value, so between that and a chronic guilty conscience, now feels about right to catch you up to speed on this health novel.

For almost 2 months, it felt like sleeping life away for the duration of summertime, and it felt like being at the mercy of what seemed like an unmanageable flareup. I felt unmanageable.

Autoimmunity (for those who might be unfamiliar) is essentially your body attacking itself. The immune system becomes hyperactive and creates antibodies that attack its own healthy tissues, organs, and cells, mistaking it for an invader. I like to think of it as misdirected anger. 😉 Or immune system genocide. This is particularly why even contracting something as mild as a cold can easily turn into pure warfare. Ask any autoimmune patient, and they will back this 100%.

I was convinced it was Lyme, my primary health provider was certain it was Lupus (SLE), my rheumatologist thought it could be Lupus but also thought it could be Sjogren’s (show-grins) but also thought it could be another autoimmunity, and then it went from being on the brink of a diagnosis after 8 months of labs upon labs upon labs…to the parameters of ambiguity I dreaded the most: Lumped back into the “Unknown autoimmune disease” category. Both PCP and rheumy said something along the lines of,

“you have an autoimmune disease, we just don’t know what it is yet.”

Right now, I have the markers for both Sjogren’s and Lupus…but simultaneously markers for other autoimmune diseases. Autoimmune world gets tricky (and expensive) and there are many conditions that mimic one another.

Noteworthy markers:

-Positive labs (including ana/anti-ro antibody)

-Fatigue

-Joint pain

–Raynaud’s phenomenon

–Photosensitivity

-Chronic neck pain

-Body hives

For over 4 years, almost every doctor, nurse, friend, you name it, dubbed all of this purely as “anxiety”.

I really cannot describe how disheartening this can become when you know for a fact that 1) It is not all in your head and 2) The symptoms and flareups are debilitating and often painful. No one prodded further. No one really listened. And almost everyone was quick to both disregard and generalize almost all of it. They would disregard it either in the name of “Anxiety”, or try and play holistic witch doctor in the name of “Maybe it’s your hormones!!”, suggest supplements or crystals, and carry on.

In 2020, I was determined to advocate for myself and get answers. Before I even tested positive for the labs, I deeply knew I had an autoimmunity. I even devoured research studies and articles and health journals on Lupus and Lyme specifically. I found an NP who had just opened a functional medicine practice, scheduled an appointment, and anticipated the results.

Lo and behold – my vitals were rockin’ and rolling, but my immune system was OFF.

“Anna…I think we’re looking at Lupus.”

I’ll never forget this phone call to go over my lab results. Most would assume I’d flip out and hide in my closet for a week at those words. If this were even 5 years ago, I probably would have. The sheer relief I felt in that moment was overwhelming though. That might sound twisted, but let me tell you…after 4 years of debilitating symptoms (when they would flareup) with zero explanation or rhyme or reason…an answer was music to my ears. My views on health/mortality are very different than the mainstream’s as it is, so it was not something that jarred me.

And yet, the never ending cycle of unknowns continue. 4. Flipping. Years.

Let me tell you something:

I hate unknowns.

…With the most burning of passions.

Answers and truth are what my heart seeks most, and yet, “unknown” is the constant narrative that follows me. I like answers, and I like them quickly. My middle name is ironic, because being in the “gray area” has become the story of my life. I am very okay with change and being fly by the seat of my pants and am as Type B as they come, but I simultaneously like to know when things are happening and how they will unfold. Timelines and answers and names for things (like autoimmune diseases, for example) are how I roll. The ambiguous middle? It’s not exactly my love language.

Yet here I sit, in the ambiguous middle. In my perfect mind, I would be crafting a blog post with virtual confetti about finally getting my hands on a diagnosis after 4+ years of absurd, unearthly, ridiculously crazy symptoms that turned out to be what is called a flareup in autoimmune world. But that is not the case today. Maybe someday, but for now, I need to get all this off my chest and be real.

Here’s where you can go ahead + click off here if you don’t care for the gory deats, or grab some coffee or booze and hang around. Nonetheless, this is my story.

I’m an open book, but writing this has been something I’ve intentionally put off for a while now. I put it off for two reasons:

1) I thought a fancy name for my health issues was the only validation card for being able to write about my experiences.

I had the labs, physical symptoms, and even picturesque proof that my body was not in homeostasis, yet lacking a name deterred me from writing about it. I had it in my head that having such would make me more “believed”. You can do a quick web search of a named disease, research it, and in a few clicks, get a basic understanding of how someone feels and what their story might look like. Names create segues. “Unknown” is way too vague.

2) Snowflakes piss me off.

I will forever and always reject the Tumblr-esque ideas of those who romanticize and (dare I say) worship the idea of seeming tragic and use their mental health/sick card to manipulate others. There’s this scary, societal trend of wallowing in sickness or mental health as though it is an identity. I am all about being real and opening up, but I am not all about abusing labels for a twisted ulterior motive. In a world of snowflakes, I dreaded sounding like one. Yes; I just said that. Yes; I just lost approx. 928734 readers. WHOO HOO!!

I am young, athletic, decent at putting makeup on my face, and am very much a go getter. I am aesthetic and good at sitting in the right (sometimes deceiving) lighting for a photo, often on the hunt for adventure, thrive off socializing, and almost everything I’ve ever done is physical. Massage therapy. Running. Gymnastics. Basically: My life looks anything but the “part”. I do not always look as horrible on the outside as I feel on the inside. Trying to find the middle of, “Omg, how do I write authentically and talk about my health while also not sounding like a condescending snowflake,” has been a treacherous middle to reach.

So here I am, trying to write in that peculiar middle.

Hello, my name is Anna Gray Smith, and I am an autoimmune disease patient. And I am not always the bubbly and fun and energetic girl you often see.

Sometimes I sleep the day away. Sometimes my joints are on fire. Sometimes I have to run out of a store because the fluorescent light gives me vertigo and I feel like I might vomit. Sometimes I look 9 months pregnant. Sometimes I wear layers upon layers and still can’t get warm. Sometimes makeup cannot hide the blemishes on my skin. Sometimes I hate being in my own skin. Sometimes I feel on top of the world. Sometimes I feel overcome by it.

From freaky body hives, to joint pain, to debilitating fatigue; sometimes I feel as lively as my age, and other times I feel like an 80 year old. For a long flipping time, I deeply knew something was off. Sunlight started to bother me, zapped my energy, and left a gnarly migraine. The same happened in stores. I thought I must just be a hypersensitive little snowflake. My entire body broke out in unearthly hives – on my eyelids, torso, limbs, everywhere – and I assumed it was just an allergy. My mental health downward spiraled into depths I really cannot even begin to explain. The fatigue was the most debilitating I’d ever experienced. I would sleep for a full night and then wake up feeling just as exhausted as I went to bed. It felt at times that I couldn’t accomplish day to day tasks without needing to crash for a 2 hour nap afterward.

“I feel like I could sleep my life away.”

Was I depressed? Bipolar? A lunatic? The endurance I once had in my runs was shot. It went from 5-12 miles being normal, to death marching for a mere 3. Fatigue. Brain fog. Throbbing joints. Stomach ulcer. Skin discoloration. Raynaud’s phenomenon and legitimately thinking my toes would fall off. Heart palpitations. A slew of other “one hit wonder symptoms”, as I like to call them.

I think the most difficult part is trying to eloquently explain it. I do not look like anything is wrong and I do not always feel like something is wrong, so navigating through a flareup when it hits can feel isolating. I do not seek pity or some royal treatment, but sometimes just knowing you are believed – even if no one can relate – is truly enough.

Autoimmunities are often what some would call the result of a perfect storm. This could be a combination of traumatic life events, stressors, former habits, environmental conditions, underlying ailment – all cultivated at just the right time, in just the right place, causing the cells and immune system to go haywire as a result.

The back Story

Anxiety. Every single physical mishap always looped back as anxiety to be the blame. It got really old, really fast. No one ever prodded further to get any specific lab markers, and no one seemed to really care. I spent maybe 15 minutes in the exam room each time, symptoms disregarded, voice unheard, all in the name of, “It sounds like anxiety.”

In 2016, I broke out in full body, asymmetrical hives. Some would randomly disappear, and then a slew of others would appear all over my face, chest, pelvic region (AWH YEAH!). I mean EVERYWHERE. Some were small and others were mutant like and disgustingly large.

Anyone who saw them was in utter shock. They would literally shape shift over night, or randomly disappear and then reappear. It was horrific. I already had hypersensitive skin, but these were far from a typical mosquito bite or reaction to something like poison ivy. Of course everrrryone tried to jump in there and make their claims as to what it was. An allergy?! Cleaning product?! Mold?! Maybe you just need to detox?! Actually, that has been the story of my life the last 4 years.

My father was the first to bring up that it seemed like an autoimmune response, but we all had no clue what it was or why I was breaking out.

Much like anyone else would do – much like many newbie autoimmune patients do – I scheduled for some good ‘ole, general #AF labs. At this time I was a patient at a standard family practice. Granted, it was under the typical medical insurance umbrella, but I expected at least some sort of direction, or at least some reaction of concern, no matter how fake. The doctor walked in to examine the creaturey looking hives. He seemed completely unenthused. There was not even a teaspoon of a suggestion. No, really. I ended up getting a comped visit due to how terrible this “checkup” was. His glazed overlook and advice were the cherry on top though. His actual words:

“What do you think it is?”

“Well…that is actually why I came here…that is my question for you.”

As happens for many autoimmune/rare disease patients, my labs came back squeaky clean and totally normal. After an otherwise squeaky clean allergy panel to top it, the doctor’s best stab at it was that it could be the spores of a fungus that float in the air and happen to come in contact with my body since it was springtime, therefore causing the come-and-go asymmetrical rash.

Despite the fact that (at the time) I barely spent any time outside and had neverrr – in all the history of my sensitive skin – experienced this before, I called BS on it. The best part? I experienced two more outbreaks of this freak rash long after springtime and its magical ‘shrooms just “floating around”, waiting to feast upon my flesh!

And so, as many autoimmune patients do, I thought it must have been a weird mishap and continued on with my life.

In 2017, things got worse.

I under slept, under ate, battled some body image and eating issues, and decided to sign up and train for a marathon on top of it. Oh yeah, and I was depressed too. I was highly encouraged to put the marathon on the back burner. Two close friends clearly saw my mental state and climax of body image issues and sabotaging behaviors, but I pressed on even with their words of caution. We live in a world that thinks it is so badass to push a body to its limit and almost destroy it. I was fueled by this mindset. Let me tell you: Starving yourself in conjunction with the physical stress of marathon training is a recipe for disaster.

I survived off 3-4 hours of sleep a night, set my alarm anywhere from 3:30-4:30AM depending on the run, exercised every day of the week on top of the runs, taught yoga/indoor cycling classes on top of all the exercise, and somehow juggled school, tests, and work in between. I would collapse on my bedroom floor at 10:00 and feed myself a rice cake or some hummus, and in my twisted mindset dubbed that as adequate enough “nutrition”. I remember being so exhausted that I would find any pocket of day to sleep. I slept in my car during my lunch hour at school, and I struggled to stay awake during afternoon lecture.

I crossed that 26.2 mile finish line…but then I got sick.

2018-2020: THe Perfect Storm

A lot happened.

I moved to Los Angeles. I was in two car accidents. I went through a devastating breakup. A lot of very complex, very unpleasant things happened. I came home in summer of 2019 to regather myself. My significant and I had recently road tripped in 3 days across the country to NC, relational difficulty began, and it was like hitting rock bottom.

No sooner did I come home than I soon found myself curled up in the fetal position of my parents’ living room, nursing a stomach ulcer. I could eat nothing more than a few bites of applesauce or a protein shake without feeling as though I could rip out my organs.

The doctor assumed it to be a product of my relational stress and nervous breakdown, but things began to look more on the up and up and I thought things were smoothed out and otherwise fine. I planned to head back out to Los Angeles in August after my summer of rejuvenation in North Carolina.

My family knew I was much more distressed than I tried to hide though. They encouraged me to wait. I had the once in a lifetime opportunity to rent a house with one of my best friends in Florida, and both family and friends agreed I should do this. At the time I thought I was fine. Looking back, the stress and leftover relational difficulty I brushed under the rug was far from “fine”.

After 4 months of long distance dating, I was aching to see my significant in Los Angeles again. I passed up the Florida op, packed up my life, found a duplex close to work in Culver City, shipped my car, and bought a 1 way ticket to that unforgiving, metropolitan dome.

I woke up and could barely walk. Yes; my first day back in Los Angeles! My hip felt like it had been seared and was nearly immobile. I immediately contacted my physical therapist (Shoutout to Dr. Jordan McAmmond – from reassuring me my uterus wasn’t going to prolapse, to keeping my ankles and pelvis in tact – she’s #THEBEST and my neuromuscular saving grace!) in NC. I had been marathon training (again), but taking great care of my joints. This quite literally appeared overnight. It felt like a searingly tight wad of tissue clamping down on my hip and the side of my leg.

I legitimately thought it was a full on glute medius or TFL tear. My walking gait was completely off and even a recovery run was painful. Between following my PT’s protocol and one of the sports therapists I worked with kindly providing some bodywork, it eventually began to cease.

And then it came back. And along with it, came peroneal tendonitis. Insert 8 more weeks of unknowns and rehab. To blame the running seemed like an easy answer, but I had a gut feeling that the intensity and overnight onset of these issues were tied to something else.

The climax of 2019 was DNFing Long Beach Marathon – my supposed Boston qualifier. It was like the last thing my body had to endure to then shut down and go completely haywire. The hip pain came back. The fatigue and brain fog came with a vengeance. I couldn’t think straight. I had suicidal thoughts. I woke up forgetting things. I made rash decisions. And I almost checked myself into a psych ward.

Then I saw it: A hallmark bull’s eye rash.

I knew I needed to get labs for Lyme.

The photo above doesn’t distinguish the bull’s eye ring as well, but it became a very distinct rash. Even my otherwise neurotic supervisor flipped when she saw it and urged me to seek medical attention ASAP.

I had gone on a trail run with Glendale College’s women’s team prior to discovering the bull’s eye madness, so my immediate thought was that it was likely tick borne. After the run I felt ridiculously fatigued, feverish, and down…almost flu like? Something was very off. I wasn’t sure if I was just naturally exhausted from hanging onto their long run pace for 10 miles, or if it was synced with the classic symptoms of Lyme Disease and the weird bull’s eye target on my arm.

I honestly had zero clue if it was just an odd coincidence or a legitimate concern. After all, it was a faster and harder run than my body had been used to since Long Beach Marathon, and I was coming off some pretty high stress situations. In 2020, I left the city and came back to North Carolina. Even though I felt much better, I still had a gut feeling something was off. I couldn’t quite pinpoint it, but it was like something damaged me in Los Angeles, and the detriment followed me home.

I noticed it first in my runs.

I had been base building with my run coach and was running anywhere from 5-12 miles during the week. I was getting stronger and feeling overall fantastic, but I noticed my breathing was constricted and this enormous brain fog overtook my headspace out on the road. It was odd because usually my heart and lungs could power through just fine, and my legs were the first tire out. This was different.

I’d set out for my long runs and feel like I death marched the whole way through. I couldn’t think straight, breathe right, and the crippling fatigue and joint pain so early on concerned me. I knew it wasn’t the runs wearing me out, because I could typically go for 5-12 miles and feel fine.

The fatigue was the worst. It followed in the actual runs, and it followed in after them. I went from strengthening both my endurance and paces, to falling a part in the warmup. It went from 12 miles being attainable, to 3 miles feeling brutal. I couldn’t recover after the long miles, and I couldn’t recover after an otherwise short and easy run.

My coach cut down on the training and was one of the first people who took my health concerns seriously. He is a rare disease patient himself (check out some of his story here!), and suggested I get checked out by a doctor if the fatigue persisted.

Let me just pause here: Out of ALL the doctors, nurses, MLM consultants pushing me to join their team of selling crystals and holistic dope while simultaneously pretending to care about my health and wellbeing…and for over FOUR YEARS…and my run coach was literally the first to believe me and not write it off. After four years of people doing just that, or saying I just needed to “detox” or just needed some special supplement or oil or just needed to change my diet or it all being in my head…or better yet, being told I didn’t “look” like anything was wrong…this was relief. Thank you, coach, for standing by me!

in May, 2020 – I knew I needed help.

I woke up one day and could barely move.

I felt like I had contracted a vicious flu strain. My joints felt like they had been seared together and I was just as exhausted as I was before going to bed. I had been experiencing the ongoing fatigue, but equated it to the stress of Covid19 reshaping life in one week’s time. On a normal spring day, life otherwise uneventful, and waking up to feel like I’d been struck down…was not normal.

Some of my labs came back as abnormal, and thus began the trek in hunting down my current undiagnosed autoimmune disease.

I’d be lying if I said it weren’t an emotionally draining, financially taxing year. Lyme Disease is what I was initially tested for, but the Lyme specific panels came back negative. My PCP was convinced it was Lupus. She was so much so that she even had me read a book on it and schedule with rheumatology to basically confirm her diagnostic criteria.

I went from nearly having a diagnosis of SLE (Lupus) in 2 months’ time, to being in the grey area, to further testing for SLE, to a grey area yet again.

3 major flareups in 2020, the same batsh*t crazy symptoms (with the most unsexy photographical proof) during a flare, a bunch of SLE markers…but still no diagnosis. Most would think that SLE being ruled out would bring great comfort. For me, it is quite the opposite. Just as I found relief in my coach suggesting a check up, so I found in finally – 4 years of no rhyme or reason symptoms and flareups later – having a diagnosis that finally made sense.

And here I sit, still undiagnosed; still in the grey area.

Unfortunately many providers will hone in on one aspect of your health timeline, while disregarding the others. Some focus solely on the lab markers, others the physical findings, and others will disregard many of your self-affirmed symptoms if you do not “look” the part.

Here are some unsexy photos

I do not think doctors somehow have this evil agenda against their patients, but I do believe they often focus on what they think the patient is experiencing, while neglecting what the patient says they are actually experiencing.

I was supposed to follow up with both my PCP and rheumatologist earlier this month for further testing, but I pulled the plug. My rheumatologist even told me she could technically diagnose SLE, but wanted more clinical findings. So why on earth then, if I was on the brink of a diagnosis, would I pull the plug?

I am exhausted. Burned out.

And still plowing through medical bills.

Follow up after follow up, lab after lab, and over $10k of bills (luckily insurance is helping!) and some ambiguous answers later, and I need a break. The grey area was my worst fear and most uncomfortable answer, and yet, the grey area of being an autoimmune disease patient with an undiagnosed condition is my current reality.

I have zero clue as to how my body systems are affected, no clue as to the nature and progression of this “unknown” disease, and no clue as to when/if I will ever pinpoint it. All I know now is how to manage it (more on that later!) and keep the symptoms/flareups at bay.

For now, I choose to live life as normally as possible. Even when SLE was almost diagnosed, I made the decision that with whatever the outcome, no diagnosis would rule my life or become my identity card. It would be a piece of my story (it still is), but it would not stop me from living with purpose, joy, and great hope. The flareups and symptoms come and go. If you can imagine the physical body being bipolar, that is often what it feels like. Stress is my #1 trigger for a flareup, so taking the thoughts captive and managing my own chaos is crucial, among other lifestyle changes.

I rarely eat sugar. I have succumbed to decaf jo. I find running to be even more of a beautiful (and free!) therapy. I’ve realized I could actually live in a bath with magnesium salt or my dear friend’s steam sauna. I’ve learned that sleep is my weapon.

And I’ve learned that putting my health in the hands of the Father is the sweetest relief that could ever be.

It’s made me hyperaware of my mortality at times, yet simultaneously cultivated the deepest trust in God. Diagnosis or no diagnosis, I have far greater hope in the One who numbers the stars and the hairs on my head. I might not know all the answers, but I know my happily ever after, and that is in the courts of the Father.

‘Tis so sweet to trust in Jesus.

“We need to suffer patiently not only the burden of being ill, but being ill with a particular illness that God wants for us, among the people that He wants us to be with, and the discomforts that He permits us to experience.” – St. Francis de Sales