Should I Stop Faking It? The chronic illness edition.

(I wrote this haphazardly and on different days, so my apologies for any nonsensicalness. I just wanted to get something out.)

I was in the ER last Thursday at Vanderbilt at the suggestion of a nurse, and that led to another appointment at Vanderbilt this week.

I’ve been wanting to write lately, to write about all the frustrations with my chronic illness, and how I hate the phrasing ‘chronic illness,’ as it sounds like some amorphous, ambiguous, possibly fictitious, imagined thing. I call it chronic illness or autoimmune disease because it’s a great many things, and there are a great many things it is not.

I’ve seen a multitude of doctors over the past couple of years, and I gave up on trying to fix myself about six months ago, or I decided I was feeling “good enough” to just deal with it. But then things became worse again.

The average time it takes to be diagnosed with an autoimmune disease is 4.5 years. And usually with one autoimmune disease, you likely have more coming your way (yay). You spend years going from doctor to doctor, having countless vials of blood extracted from your body with a smattering of tests performed on the viscous burgundy samples. Throw in a gallons worth of urine samples, and some biopsies, mammograms (why not), MRIs and a boat load of other tests. Sometimes nothing shows, sometimes confusing results form, and nobody really knows what to tell you, but it seems like doctors often want to tell you something, so they might say it’s this or that, and move on.

Yesterday at my appointment, after talking with the doctor and nurse for a long while, after they looked at my body and looked at my records, the doctor sat down and looked straight at me and said, “I’m going to be honest, you’re a mystery to me. There’s definitely something very wrong with you, but I don’t know what all it is.”

I was actually elated to hear this. I needed honesty, and I needed to feel seen.

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As I alluded to, doctors have never really figured out what’s wrong with me, but they knew that something was wrong and prescribed various treatments, medications, supplements, lifestyle changes, etc. (I’ve been on a treatment that I inject in my stomach or legs every other week.) Doctors might recommend me to some other specialist or tell me: it’s all just something you’ll have to live with for the rest of your life. Which is never what you want to hear when you’re struggling to make it through each hour, and you aren’t really sure if you want to make it to the next. (dramatic, much?) Or, as I said, they might claim it is some specific thing just so there was a definitive name to call it and declare this treatment or that treatment will cure all. (Let me note that I know doctors mean well, and I know they are often not provided enough time to sit down with a patient to determine the root causes of illness).

But people love to put things in neat little boxes, it’s comforting and makes you feel like you have control. If there is no specific name to call it, no real way to categorize and qualify it, no objective answer to the question, then it is almost as though it doesn’t exist. It’s easier that way. But it can make someone with a chronic, undiagnosed illness feel like they don’t exist.

If you have cancer, a broken leg or a heart attack, people know what box to put you in. With chronic illness, you’re sort of left floating around in space, boxless. It makes sense and that was totally profound, I promise :)

[I always feel the need to note that I completely acknowledge there are enormous amounts of people who suffer from far, far, far worse health conditions than I. And I do not intend to belittle, compare or inflate the validity or importance of one health issue over another.]

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As someone who comes from a family that is not-so-great at admitting they are not feeling well or are sick, or that they need to slow down, I have always had a difficult time believing anyone (including myself) when they say they are sick or need to take a break. It sounds awful, but my thinking was: “Well, I feel terrible quite often, and I never stop, so why should other people stop? They must be weak. We should all just keep going, keep pushing. Survival of the fittest! (and most stubborn) Yea!”

And we see where this gotten me. Of course, I never said those things aloud to someone claiming illness, and I always acted like I deeply felt for their suffering. (Let me note that this did not apply to all people suffering, as there are certain folks who you can tell without a doubt they are suffering in beyond-imaginable ways).

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This illness, this whatever it is, has made me both more and less empathetic to others. At times, all I can think about is the pain or fog or excruciating electric itch I feel. The burning skin, the disorientation, the headaches, the shaking, the exhaustion in the night accompanied by the complete inability to rest and sleep because I cannot find comfort in the body which I reside.

I currently work with people experiencing homelessness in the social services sector. I have many days and moments where I feel their story penetrate my marrow, and I cannot get them off my mind as I try to live out other parts of my life that aren’t my “work.” I deeply and agonizingly am overtaken by the severity and injustice of their various situations. And then I have moments where someone tells me the most horrifying and painful story, and I feel close to nothing. Part of this could be compassion fatigue, hearing people’s terrifying tales everyday, helping others (or at least trying) everyday. You can sort of lose yourself in this. You grow weary of helping others constantly without ever helping yourself. I have seen this in a multitude of people working and serving in the social services field (and in other fields like teaching, health care, child care, etc).

But part of this lack of empathy seems directly related to when I am feeling my worst. As if I have nothing left to give in that moment, because it was all I could do to get up, take a painful shower and drive myself to work, trying to break through the swelling fog that overtakes my vision daily, which glasses cannot remedy.

Whenever someone asks me about my health or wants to know more about chronic illness, it takes about 7.2 seconds before their eyes begin to glaze over like a fresh Krispy Kreme donut. If you haven’t experienced chronic illness, it seems that it’s extraordinarily difficult for people understand and identify with it (and that makes sense). Five years ago, I wouldn’t have been able to understand. I would possibly think someone was likely just not eating correctly and just didn’t have the willpower to do what they needed to do in life. I might think they were lazy or a hypochondriac. (Not that I’m saying folks like that don’t exist. They do, and they are making it really stinking difficult for us with debilitating autoimmune issues and other chronic illnesses to have an accepted and acknowledged place in the world.)

When someone at work questions why I may have to leave the field in order to pursue something more remote, less demanding and on-call, or when they ask “are you sure you need to leave?,” “what about your clients,” I feel almost smacked in the face. Though I know they mean nothing by it, and they just want me to stay on the team. But part of me wants to scream, “IF YOU ONLY KNEW, YOU WOULDN’T QUESTION THIS DECISION AT ALL.”

But I don’t do that, as why should they know or understand what I’m going through when I’m walking through everyday, all day pretending that I’m okay, or even better than okay? Why would they know what’s really going on, when I’m faking being okay?

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We want to be understood, we want to be validated. We all do. I want to be understood, but I know that’s a tall order. I can see the lack of comprehension by those who learn I have some sort of chronic illness, the lack of understanding that this is something that affects me on a minute to minute basis. This all sounds all so selfish and pity-seeking to me. I can’t stand to feel this way, but that’s what I am reduced to at moments. I’m writing this as I’m crying on my bed, punching pillows, pacing my bedroom floors, so frustratingly tired and angry and just so sick of being sick. People have said to me before, “One day, you’ll wake up and realize you’re all better, and that slowly it just all went away.” I’ve been waiting and waiting for that day to arrive. I’m tired of waiting, I’m just so tired. I’ve had glimmers of the old me, the one who scaled rock walls and sprinted up mountains. But that person feels far away. I feel like I began to lose myself somewhere around age 27, (when the health issues began) and it’s been a slow and, at times, sudden and harsh loss of myself since then. (My apologies for how dramatic this sounds. Though the Vanderbilt doctor told me I say “I’m sorry” too much and that I shouldn’t apologize for what’s happening to me. Sigh. But anyway….)

I’ve spoken of this before, in writing and in some (embarrassing) videos I’ve posted here and there, but it is as though my interests, my goals, my drive towards something, anything slowly seeps out of my being. Oftentimes, I can’t seem to figure out what it is that I’m interested in anymore, other than researching ways to get well. It becomes an obsession. The sneaky creeping thief continues to slowly eat away at what I thought was me. Sometimes pieces of me return, and I welcome them back like that old piece of clothing you rediscovered in your closet. You put it on and you feel your old self and adventures woven into the threads, and somehow by wearing it, you feel like that old you again. (Maybe this is an experience only I have?) But I digress…

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I’ve often wondered what started it all. And I have written about this before, of course. Was this in me the whole time? Did this happen because I took too many antibiotics as a child, because I used too many steroidal inhalers or other oral and topical steroids throughout my life? (I think yes.) Why did I need those things to begin with? Was it all the doxycycline I took when I had outrageous acne in high school and college? Is it what I’ve eaten? Is it our overly-sanitized, chemical-laden world that has brought down my already weakened immune system? Is it because I overwork and over-stress myself in every single job I take? Is it the jobs or is it me? I ask myself these questions all the time, but it hasn’t led me to a “fix” yet.

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This is my reality right now. It’s what I know and understand. You’re likely experiencing some sort of reality that I could not understand and maybe I never will fully know or understand it, just as you may never know or understand my reality. But I think we need to share our experiences—to shed light on what is not known to others. (Golly, I sound cliche, do I not? This is the days-later version of myself rereading what I wrote.) Much of my intention for writing, well part of it, is to continually reveal that you never know or may understand what someone else is going through. Many people suffer in silence or just have some sort of experience we may not know or understand, whether it be some sort of mental or physical illness, a severed relationship, death of a loved one, financial problems, homelessness, constant experiences with racism, and a whole multitude of things.

Maybe one day you will know or experience their reality or a similar one, mine or someone else’s, but your experience may occur somewhere down the line. And you can look back to my story or someone else’s and feel some sort of sense of comfort in not being entirely alone.

Alone and isolated—that’s what you feel and that’s what I feel when not understood, when not heard, when my reality and what feels like ‘myself’ goes unseen. (Geez this sounds so dramatic. Again, I’m reading this days after I wrote it, which shows how grand of a wax and wane my mental state and overall mood can be. Another aspect of this chronic illness is the extreme ups and downs of it all. I can and certainly do have good days.)

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I want my family to understand. I want my friends, my coworkers, the lady at the cash register, my niece and nephew, my clients and the doctors to understand. I want my husband to understand completely, the one who has been around me the most and seen me at my worst. I want him to understand why I don’t care at all about looking for a new rug for our living room, why talking about sizes and colors and fabrics have no meaning to me.

Marriages with one partner having chronic illness have a 75% divorce rate. How’s that for encouragement? I hate this for my husband, and have often wanted to relieve him of his duty toward me (and have tried to encourage him to do that, but gosh darnit, he keeps sticking around and supporting me). I don’t like being the sick one, the one in need, the one who changes the way we live or keeps us from living how we want. All of this began to unfold very early on in our relationship and became all-encompassing a few months into our marriage, and it has persisted since. So much for the carefree honeymoon phase. Chronic illness places spouses, partners and other friends and family members in such difficult positions.

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On a recent Friday, I thought I was going to end the day early for once and was excited about the prospect, when I received a call from a client panicking, as she had just been in another domestic violence situation with the man she’s been with for some time. She was finally ready to escape, and there was finally a place available at a domestic violence shelter (anyone in this field knows that is a rare occasion). Knowing I needed to seize the opportunity before she changed her mind again, I took off across town to pick her up at a random Piggly Wiggly on the side of the road. Through a series of events, the entire process of getting her to the shelter took many hours and inched its way into the evening. This included a run to Sonic for her comfort food, waiting, questioning, panicking, crying, multiple cigarettes smoked (her not me) and a host of other tense and upsetting emotions and conversations. (Along with me peppering in light-hearted awkward things, trying to lessen the severity of the situation. Trying.)

Somehow, my mind and body shut off my ability to feel any of these heavy emotions she was feeling while I was with her (at the time I thought my compassion fatigue had just fully set in). I tried to just remain present and be the comforting yet in-control person she needed. (I’m not sure if I pulled it off, but that’s what I was going for.)

When I finally made it home, walked inside, dropped my bags and changed clothes, it’s as though my body suddenly realized it was time to turn my feeling human brain back on, and a heavy curtain of mental, physical and emotional exhaustion draped over me.

My husband was sitting outside on our back patio, drinking a Topo Chico when I arrived, and I tried to sit with him. It was like his words didn’t have meaning (it sounded the way adults’ voices sound in Charlie Brown, if you understand that reference), or the subject matter didn’t seem important, and my brain didn’t have the capacity to be present with him. (Again, my poor husband). It was as though there wasn’t enough air in any room (or in this case, outside) for me to be around anyone else. Being around any other human’s energy was too heavy and burdensome.

And the rest of the weekend was consumed by worsening physical symptoms, exhaustion, and I didn’t want to leave the house or be in public (mainly because of how I looked due to worsening symptoms).

(Autoimmune symptoms aside, I think this probably happens frequently to people who work in this field or similarly physically and emotionally taxing vocations.)

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I’m not really sure why I told this story or really why I’m writing any of this. I guess I just wanted to demonstrate that it’s been difficult to balance caring for myself and trying to care for others inside and outside of my job. It becomes difficult to fake it. I saw a post recently that said “If you have chronic illness, you lie everyday.” And it’s true. Folks with chronic illness and other such health issues often have to feign healthiness and well-being for the benefit of their job, friend, child, significant other, etc. I’m not saying we should be melancholy all the time or tell everyone we encounter all our woes. I guess I’m just saying, sometimes you have to tell your story, otherwise nothing will ever change. (Sheesh, dramatic me again.)

At times, I’m frustrated, furious, despondent and just so mentally and emotionally exhausted. I do have good days though. As I said, my moods, flares and overall physical state wax and wane. And that’s one piece of chronic illness that makes it so difficult—the unpredictable nature of it all. It makes it extraordinarily difficult to plan for the future. I don’t really know what I’m supposed to do right now, I don’t know what job I should be in, when I’ll be better and for how long. What will my life be like in a month, a week, a day or a year from now? I don’t really know, and I’m trying to be okay with that. (Buuuuut I’m not.)

I don’t know how to end this, so I’ll just end it by recommending a book to anyone with chronic illness or who knows and loves someone with chronic illness. “The Invisible Kingdom: Reimagining Chronic Illness” by Megan O’Rourke. I read it and thought, “oh my lord gracious, I could have written this.” (Except that she is a stupendous writer.) I identified with it so incredibly much and it reveals the ambiguity, unpredictability and long and frustrating journey that someone with chronic illness endures (and how we are often delegitimized in mainstream medicine of ‘diagnose and prescribe.’)

ALSO! To end on a positive note: I did feel more hopeful after my most recent appointment at Vanderbilt. More to come. Hopefully more clarity.

Links to previous articles I wrote about my chronic illness: “I’m an illness orphan: part one.” and “I’m an illness orphan: part two.”

https://www.hinsdalelawyers.com/blog/how-chronic-illness-affects-divorce-rates

https://time.com/83486/divorce-is-more-likely-if-the-wife-not-the-husband-gets-sick/

https://www.benaroyaresearch.org/blog/post/diagnosing-autoimmune-diseases#:~:text=Being%20diagnosed%20with%20an%20autoimmune,typically%20has%20seen%20four%20doctors.

I’m an illness orphan: mysterious health issues, revealed. Part one.

As I first step into the fan of warm water raining from my pretentious filtered shower head, I shriek silently, and quick gasps and quiet screams curl from my lips, as I crumple while the multitude of molecules made of one oxygen atom and two hydrogen atoms sting like thousands of fire ants infiltrating my body’s wall.  The warm, just warm, not hot, water sizzles my raw, slit, scraped skin, and I tense my whole body, straining, contorting, folding in on myself as if this will make the unrelenting scathing end. (Am I being dramatic enough yet?) Then a blood vessel pops. I didn’t even know such a thing could happen in this scenario. It appears my eye has been smeared with red paint.

You know in The Lord of the Rings, the flaming Eye of Sauron or the Eye of Mordor, well that’s kind of what my eye looks like here. And I thought, Geeez, popping blood vessels in my eyeballs is not what I needed to add to my beauty routine. Along with swollen, wrinkled eyes, a raccoon-face, red donut surrounding my eye, frighteningly red and inflamed skin all over my body, a wrinkled, bleeding, weeping neck, well, this just seemed a bit much. It’s kind of like wearing enormous earrings when you already have on seven necklaces, four bracelets and a purple and orange floral dress. It’s just too much. An unnecessary accessory. My flaming eye ball of Mordor was a fashion faux pas. The blood vessel burst because I was in a special type of pain and discomfort.

Actual photo of my eyeball. (but not really)

My body has become allergic to everything seemingly. And a myriad of other things are happening. More on that later. Showering right now kind of feels like someone taking a cheese grater to my skin whilst graciously pouring salt all over the tiny open woulds blanketing my body. (I don’t recommend trying this.)

I realize this type of pain is nothing compared to what a multitude of people endure on a daily basis. You know who you are.

But my body is deeply confused about what’s what and what to do about it.

I often feel like all that is happening shouldn’t be affecting my life this much. Am I imagining it?  Am I exaggerating it?  But I have to plan everything around what is happening to my body.  What clothes can I wear that won’t be painful?  What fabric won’t I be allergic to?  My skin feels like it’s been burned. I don’t want to move my arms or legs or turn my head and strain the skin on my neck.   I haven’t been able to fall asleep until 6 a.m. and sometimes 7 a.m. lately, which is later than I used to wake up every morning.  I’m uncomfortable all through the night because I don’t want anything to touch me, and I’m ABSURDLY itchy. (Maybe that sounds benign, but imagine ants crawling all over your body all night, biting you while being burned with a hot skillet as your entire body is emits heat like a radiator but you’re simultaneously shivering and shaking uncontrollably.

I promise I won’t be complaining and throwing a pity party through this whole smattering of words. I mean, maybe. You’ll see (Mwhahahahaha!). Originally, I meant for this all to be a comedic take on everything that’s going on. I mean, I now wear a hazmat suit to clean my apartment so I won’t have some enormous allergic reaction and have to go to the hospital. I look (and feel) like an astronaut while dusting and sweeping. I’ve confused a few neighbors when I step onto my balcony and disrobe from my hazmat suit. (Don’t worry, I have clothes on underneath.) If that’s not humorous, what is?

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Why has there been such a dramatic increase in allergies, autoimmunity, certain cancers and other diseases over the last few decades? I’m exploring that these days, but that’s not really what this slab of words is about. Perhaps I’ll write about such things later. I just want to throw this in here to confuse everyone.

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I’m not exactly writing this to share my story or improve anyone’s life. Not really, anyway. Maybe a little. Mainly, I’m writing this to improve my own life. I know, I know, selfish. Because it helps me process and let go of emotions and memories. And maybe by some magical magic’yness, if I get all of this down in the written word, then it will leave my body and only remain existing here on the page. This writing also provides a distraction from all that is unfolding in regards to my health. AKA I want to rip the skin off my body. Everything hurts. I don’t want to move my body. It hursts to wear clothes. I can’t leave the house. If I leave my home, I will surely terrify old ladies and small children because of how I look. I don’t know what to eat. I’m allergic to everything I encounter. I can’t sleep at night. All night. Literally. No, actually literally. Not like when someone says “I literally died.”

I guess I’m also writing this because there are so many difficult-to-diagnose diseases and health issues out there that people are struggling with every day. I feel like doctors, family members and friends often don’t take them seriously because they don’t understand them. And many of these ailments are rather new in the realm of scientific study, as there are new diseases and health issues popping up because of the changes society and industries have undergone over the years. I often have not taken people seriously, as I’ve had the mentality to just “buck up” and push through the pain. Don’t be a pansy. Don’t be weak. People shouldn’t see that I’m vulnerable, so I will push that mentality onto others too.

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I’ve been grappling with these health issues for about four years, but the last 11 months have been the most brutal and unending. It’s the kind of thing you don’t know when it will end or how much worse it will become. Some days are better than others and you think you’re taking a turn for the better for ever. And then you fall back down into the all-encompassing, can’t-focus-on-anything-else, please-let-me-out-of-my-body phase.

I realize what I have going on isn’t the worse thing ever in the world. But it does occupy my mind (and body) on a moment to moment basis. I have to be conscious of almost everything I choose to do, in regards to what I eat, drink, what touches my body, what clothes I put on, how I move my body, where I go, what I’ll be exposed to when I go, what new things is my body allergic to, what do the people around me have on their body—perfumes, animal dander, cleaning products, chemicals? Will I be able to open my eyes in the morning? Will I sleep more than one hour tonight? Will I sleep at all?

My body is seemingly attacking anything it comes into contact with; that is, water, clothes, hot and cold temperatures, food, drinks, when something barely touches my skin, any cleaning product or chemical, a feather, animals, plants, squashes (for real) and so much more.

In some ways, it sort of feels like I’m slowly becoming the Bubble Boy from that episode of Seinfeld. It feels like one day some day soon I may have to live in a bubble because my body can’t seem to handle anything it encounters. Yes, let’s just laugh about it for now. Mary-Margaret the Bubble Girl. Hahaha*. [Secretly crying my eyes out*].

My health issues are multi-faceted and complex. This isn’t just skin deep, something is malfunctioning within my body, of course. And there is pain and mayhem within my bod, but it’s difficult to discuss and nobody seems to know what’s going or how to fix it. I've been tossed from doctor to doctor, as I’ve heard many people have been with such ambiguous issues. We’re like illness orphans. Nobody wants to claim us or knows what to do with us, so we’re just wandering the streets opening random doors hoping it’s our home and that someone can help us.

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[Some of the following writing was written at various times, random bits from recent months. I might date certain things, some I might not.]

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Journal entry, Mid-December, 2020:

“I’m sitting here on my bathroom floor, in front of the sink, listening to sad music by John Moreland finishing up a dramatic cry after realizing just how much all of my dadgum medical bills have added up to over the past year. It’s a hefty heifer much.

But life is sad and life is funny and things are weird and difficult and confusing and sometimes we just have to laugh at it all.”

So let’s have a laugh at some of the things that have occurred throughout my “health journey.” That itself is an annoying phrase. I picture myself in a teeny tiny submarine floating through my bloodstream on a quest to crack the code of my perplexing body. Captain Mary-Margaret on her maiden voyage. Kind of like in the Magic School Bus. Did you ever see that show? They took a bus into someone’s body once.

Previously, I said this has been going on for about four years, but I feel like it’s been building for many more years. I first actually noticed abnormal health things in 2015 after I said no to my first marriage proposal, quit my job and spent some time living in a tent on a farm getting certified in Permaculture Design. As people do.

Maybe that situation ignited the fiery anger in my bod.

(Sorry in advance for anything that sounds gross or unpleasant. But life is unpleasant. So here we are. Also, not all the soon-to-be discussed health predicaments are necessarily related… but they’ve just happened, so I’m plopping them down here. And I will also not discuss all my heath issues. Like my hip injury that will require me to have a hip replacement eventually, and now I’m not supposed to run.)

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Let’s just pop into the view of the fly on the wall at some of my doctors appointments.

We’ll flip the channel to my appointment where we try to determine if the two-centimeter mass in my right breast is cancerous. (Yes, I realize this seems like a large leap from skin issues to possible breast cancer.)

After changing into a stiff, papery blue gown and sitting in a small “room” that was really just a cubby pardoned off by a shower-curtain, I sat there staring at the curtain dance in the wind as people swished by, and my scantily clad body shivered in the subarctic temperature of the office.

They finally called my name, well part of my name, just: Mary. In all my paperwork, I always hyphenate my name Mary-Margaret, so people will hopefully get the point that I am from the South, and I do indeed have a two first names. Yes, it may be unnecessary to have them both, but it’s my name, dadnabbit. If your name was Pam, would you be okay with me shortening it to Pa?

Anywho. So it’s time for my mammogram, and I’m in the dimly lit room with this ginormous contraption that looks like it’s either meant to smush my whole body or pull my limbs apart. Mostly it’s for the first…well, to smush part of you, the mammary part. Mammary… funny word. Heehee. If you’ve had this done, you know that it can be a wee bit uncomfortable to have your gals smushed in between two cold plasticy (or maybe metal?) plates. (I blocked it from my mind.)

Hi, I’m about to provide too much information about my body.

So, I’m not super, um, well-endowed in that particular area of my bod. It is what it is. Sigh. Basically, when you don’t have too much to work with, (i.e. much to smush in this contraption so they can scan it for bad things) then by golly gosh, it’s a might uncomfortable. I had to move my body so incredibly close to the contraption, my face was smooshed against some other plastic protruding pieces. Also, they make you hold your breath while each actual scan is being done.

After some smooshing of muh’ chest under this thing a few times, some beep-boops happening while scans took place and holding my breath, I suddenly began to feel a bit tingly, and things became bright and sparkly starry. I thought, that’s kinda cool, but… it’s probably not supposed to be happening. And then I declared “I think I’m about to pass out,” as I began to slide to the ground, mammaries still locked down.

But the nurse swooped in, placing her experienced arms underneath my underarms, dragging me to a chair. It wasn’t pain that got me, but it just felt so odd having this done.

So that was embarrassing. Kind of like the time I passed out when I was getting a teeny tiny daisy tattooed on my forearm by a hefty dude covered in tats.

The nurse assured me that was something that happened often, though I’m not sure if I believe her. She also told me my size was ‘fiiiiiiiiiine’ for the smooshing, and that the ultra big’uns and the flat-as-a-board ones (her words) are far, far worse. That also might be a lie. But thanks, Nurse.

After the mammogram, I moved into a room for an ultrasound of the breast. I lay there in another frigid room with my shirt off as they smeared cold oily wet stuff on my chest. What is that stuff?

She started moving the ultrasound thingy-poo on my breast (I hate the word breast. But I hate the word boob more.) Anyway, it’s cold and she’s really pushing down on it in order to reeeeeally get a good look at that mass up in there.

I learn that I apparently have ‘extremely extremely dense breast tissue,’ making it wildly difficult to see if there’s any cancer hanging out in there. So this nurse brings in the head-hancho doctor to take a look. Before she arrived, the nurse warned me, “she pushes a lot harder than me, so be ready.” The doc was a slight woman with fierce angular features. The nurse and head-hancho were talking quietly to themselves while looking at the screen. That’s never comforting. Come on, tell me what you’re saying and seeing! I’m right herrrrre.

Then the doc starts pushing the contraption all around. It hurts to have the mass pressed on (which I think is supposed to be a sign that it’s not cancerous actually… I heard?). She speaks in some Russian-like accent as she aggressively interacts with my breast. Sheesh, we just met, doc.

Long story short, or maybe not so short, she couldn’t ever get a view of cancer. I learned that if I wanted to really find out if I had cancer, I’d have to get a biopsy and all that jazz. I also learned that mammograms and ultrasounds are really expensive even with insurance. Which made me decide to not proceed with more tests because frankly I don’t want to pay for them nor do I really have the means to do so.

I also learned that when you have really dense breast tissue, and the head-hancho doctor can’t see cancer but they don’t exactly know for sure, for sure, they will send you a letter in the mail that explains: ‘We couldn’t find cancer, but you still might have cancer, so don’t sue us if you end up having cancer. And consult with your doctor. But just don’t sue us. See, here, now you can’t because we sent you this here letter warning you that you might have cancer, we just couldn’t see it because of your abnormally dense breasts.’

Some of you may be thinking, ‘That’s rather irresponsible or stupid or ridiculous. Don’t be such a boob, Mary-Margaret, just go ahead and really figure out if you have cancer.’ But.. I’m pretty sure I don’t. And no one is making me go get a biopsy, as in doctors aren’t forcing me to. And lots of people have masses in their breasts that mean no harm. And I think I would be losing weight if I had cancer, but I think I’m gaining weight. Also, again, everything is expensive. And our healthcare system is a a bit of a mess.

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Back to regular programming of the show: i.e. discussing the stuff that’s really driving me bananas.

Whatever I’m suffering from, no regular family doctor, naturopath or allergist has been able to figure out. I’ve realized that if you can’t put a name to something, people generally don’t care too much. If you have an official name for it, a person can put it in a box and think of it a certain way. We like to know what things are and be able to identify what they mean and how they fit into our world. Hence why I am a street-wandering orphan in the healthcare system.

My stuff doesn’t really have a name. It’s a combination of all kinds of poorly-functioning body systems. Or maybe I should say my body is just confused. Or it’s trying to tell me something. Yes, she’s just confused so she’s attacking herself. Kind of like a scared, deranged animal in a cage, that slams its body against the walls, trying to run out of the cage only to once again crash and crack its face into metal bars, ripping fur off its body, scratching, tearing at its own skin. That’s me.

Me.

One of the aspects of my issues that drives me absolutely [I want to cuss right here] insane, are my skin issues. Some would say its severe eczema. ‘Oh, eczema, that’s just a little dry skin or rash,’ you say. ‘That’s what babies have sometimes,’ ‘Just moisturize more.’ ‘Have you used coconut oil, Mary-Margaret?’

This makes me want to slam through a wall like the Kool-aid man.

IT’S NOT JUST DRY SKIN. And this is not eczema. It is and it isn’t. It’s an allergic reaction to foods I eat, to anything I drink. When a hair from my head touches me, I get itchy and sometimes break out in hives. Water can make me break out in hives. Sweating makes me want to tear and rip my skin entirely off my body and never put it back on. I can’t work out anymore. I can’t take showers without wanting to scream and perhaps without busting a blood vessel, as we’ve learned.

As I’ve said, it keeps me up all night. I never sleep more than an hour in a row, and often I don’t sleep more than 30 minutes at a time. Every blanket is uncomfortable. My temperature regulation is all kinds of off. I don’t want anything to touch me. It hurts for anything to touch my skin. It hurts to turn my neck or to have my legs and arms bent a certain way.

I generally sleep for about one to five hours per night. For nearly 11 months now, it’s been this way. No, really, that’s all. Usually around three hours. Lately about two hours. That one to five hours of sleep is gathered over a long period of time of me tossing, turning, ripping blankets off of me, holding ice packs against my skin, laying wet towels on me, slathering all kinds of skin remedies all over my body, crying, scratching, bleeding.

And let me tell you, things get pretty darn interesting when you’re sleep-deprived every single day of your existence and you go to work and interact with the public. (*Since first writing this, I had to quit my in-person job because everything with my health has gotten too out of hand and unpredictable. Yes, really. Sigh.). When you haven’t slept, things can be extraordinarily funny that aren’t actually funny at all. It’s great! Things can be unbelievably sentimental and inspiring. Awwwwww. I looked up in the sky a few days ago and saw a hawk or some such bird flying, and I just immediately started crying (whilst walking down a busy street) because I thought: ‘Wow, he’s so majestic. And life is beautiful.’

But it’s not all fun and games, folks. My brain also has way less patience. Sure, I can somehow manage to fake it at work. But I usually feel like flipping over tables and/or just running out the door because sometimes nothing seems to matter when you haven’t slept and are probably borderline secretly psychotic. (I say this in a sort of joking way, as I’m sure I’m fine, and I’m not trying to downplay those who are indeed psychotic. I only bring it up because there are studies that show major sleep deprivation lends itself to psychosis.) I’m fine. How are you?

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I can’t be within a ten foot radius of a dog, cat, horse or hamster without having an allergic reaction. I can’t let water touch me unless I intensely moisturize right after (hand washing has destroyed me during this pandemic, let me tell ya).

I’m also seemingly allergic to smells, fragrances… like just in the air. I smell a strong perfume or cologne and my body suddenly says, “Now time bring out hives. Mister Hives want say hello to Miss Fragrance.’

I’m not sure why my body talks like a cave man, but she does. Clearly, she has a lot to learn.

Clothes make me itchy and rub my skin raw. I have to choose each item of clothing specifically if I want to actually remain in a semi-bearable state. Which means I have to wear loose clothing. which also means, I have to choose each day: Do I want to look cute today? or do I want to look like I’m wearing a sheet for a shirt and trash bags as pants?’

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My suffering usually goes unseen by most individuals. Sometimes I’ll look like I’m strung out on some kind of drugs just haphazardly scratching my skin. ‘Hello, I’m Mary-Margaret and I’m on crack. But not really, a leaf just touched my skin, so now I have a monstrous weeping rash all over my body.’

Apparently my cortisol levels or regulation of cortisol is out of whack, which connects to my temperature regulation, sleep/wake cycle, stress levels, blood pressure, weight gain/loss (I’m on the gaining side, I’d say). According to good ol’ WebMd, “Think of cortisol as nature’s built-in alarm system. It’s your body’s main stress hormone. It works with certain parts of your brain to control your mood, motivation, and fear. Your adrenal glands -- triangle-shaped organs at the top of your kidneys -- make cortisol.”

At night, my body tends to be in fight or flight mode, when I shouldn’t be flying, I should be lying. I tend to shake uncontrollably whilst simultaneously being unbearably itchy. My hands become entities of their own and scratch with no abandon, as if there are no consequences, as if they don’t have to go to work the next day and show everyone the pretty red, bloodied marks they’ve made all over my body that also has to go to work.

My inflamed eye area has aged me to that of a 72-year-old woman who’s smoked all her life and thinks French Fries are a vegetable.

Speaking of vegetables. Some people think part of what is wrong with me is that I’ve been poisoned by all the chemicals that now reside in our food. Pesticides, glyphosate and all such things.

I definitely think this could be a contributing factor.

Some people think it’s because I’ve been vegan for seven years. Or “plant-based” as I like to say, which sounds even more pretentious than ‘vegan.’ Maybe that has contributed, maybe, BUT my husband has been vegan longer than I, and he’s just flipping fine. And so are a millions of other vegan people (Yes, vegans are people too, I think?). But also (drum roll, please)…….. I’ve tried eating meat again lately. There I said it. Pretentious organic grass-fed beef, to be exact, prescribed by my Alternative Medicine doctor. And some local, organic eggs. [Don’t worry people, I saw regular doctors too.]

***BREAKING NEWS : This just in! Mary-Margaret may have a nickel allergy! which means her plant-based diet high in whole grains, beans and nuts MAY INDEED be contributing to her ailments.*** [We made this potential discovery after I’d already written this piece.]

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Let’s now flip the channel to one of the times I had acupuncture done.

(I’m actually still going to acupuncture some. I’m not sure if it helps at all. But I’m going. #desperate)

I go to a place in East Nashville that is certainly not the fanciest (but everyone is kind and helpful). There’s a whole bunch of humans lying in recliners, often asleep whilst needles protrude from various areas and extremities—all in the same room. It’s pretty odd-looking, really. There’s soft meditation music playing and dimly lit lights that look sort of like ginormous snowman lanterns sitting on the floor staring at you while you lay there like a slug.

During one of my first few sessions of acupuncture, I found myself getting extraordinarily uncomfortable after some long-feeling amount of time. I had to pee like a pregnant lady needs to pee, as in RIGHT NOW. This went on for some time. I shifted around, tried to not pee in this lazy-boy-like chair. I tried to meditate, chastising myself for not being able to reach inner peace, tranquility and self-actualization in what shouldn’t be more than 45 minutes to an hour. (They come get you after that allotted time. Supposedly.)

I had reached my bladders bursting point, and the rest of my body wanted to explode out of this stagnant position. So I finally sat up and someone came to pull the needles out of my bod. They didn’t act like anything was off, and I just walked out in search of a bathroom. Whilst I sat in the stall releasing all the urine one could possibly hold (don’t you hate the word ‘urine’? Ew.), I glanced at my phone to see missed calls and a text from my husband asking if I was okay, worried. And yes, I held my phone while in a stall of a public restroom. Don’t even play, you do it too.

Upon looking at the time, I discovered I was left lying in the chair with needles sticking out of my body for over two hours and fifteen minutes.

I thought this was going to be a much more exciting story, but it wasn’t. But that’s a really stinking long time to have to lie still while needles stick in you, that’s all.

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And now we’re zipping over to some Alternative Medicine stuff.

Have any of you ever heard of muscle testing or had it performed on you? It’s difficult to explain but it’s this way of determining weaknesses in the body, sensitivities and allergies to food, supplements, etc. I’m sure there’s validity to it, there is, but.. it just feels hokey. (But again! There’s legitimacy to it. It’s applied kinesiology. I’m not meaning to demean the method.)

For my muscle testing… I hold out my arm as the doc presses down on my arm at various times while she simultaneously presses certain areas of my body or holds a food or pill or supplement against my body to see if my arm drops down more while she’s pushing down.  If my arm drops down, as in it gets weaker when she pushes, then that means I have a weakness in what ever organ, body part she was also pressing on, or have an allergy, sensitivity, aversion to whatever food, herb, supplement she was testing.  Hmmmm, I explained that horribly.  Basically what I wanted to say was that often times, it felt like she was pushing my arm down more at certain times and I wasn’t actually the one reacting to certain things.  I’m sure that’s not true… it just felt rather not foolproof.

Basically, she determined I have all these toxins in my body, heavy metals, bad things, accumulated over the years, from walking on ground laden with pesticides, chemicals, insecticides (likely on our family farm I grew up beeboppin’ around barefoot on, and also from eating mounds of vegetables and fruit doused in crap, and from absorbing all the synthetic, man-made unnatural, chemical’y things from cosmetics, lotions, soaps, shampoos, plastics and all the like).  And from when I took tetracycline in high school for my skin. And when I’ve used oral steroids (not the weight-lifting kind), received steroid shots, used steroid creams (though I kept these to a minimum since I heard they were detrimental to your skin) and all kinds of fun things. This may sound like conspiracy, but THIS I actually believe to be true. I think most of us have been contaminated, we just all react differently and in different ways.

The alternative medicine doc recommended I take a bucketload of supplements that all happen to be sold in the office of this particular practice. (I’m sure they’re legit, it just didn’t sit right with me). But almost literally a bucketload, folks. I did it for a bit, but once my body had fully FULLY turned red from the “detox” and the supplement load jumped to 50 pills a day (consisting of about 16 different supplements), I had to pass. I canceled all future appointments. But before that, in the moment, I purchased all the stinking pills out of desperation, and now they’re sitting in a brown paper bag under my bathroom sink laughing at me. Everyday.

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Allergy Shots

Many people and doctors (not that doctors aren’t people) were certain that allergy shots would majorly help with all my allergic reactions. So I had some allergy patch testing done on my back, and my skin lit up like a Christmas tree strung with only red pulsing bulbs. Beautiful.

So boom. Allergy shots commence once per week. Long story short, I went for many months and my skin and allergies progressively got worse. I kept thinking, ‘This is supposed to happen. My body is acclimating. This is fine. This is fine. I want to burn my skin off, but this is fine.’

The nurse administering the shots started questioning how I was doing since I looked like I had been stung by bees all over my body. I came in one day, they looked at my skin and refused to give me the shot and scheduled me an impromptu appointment with the main doctor right there on the spot.

Multiple staff members looked at my skin and asked me questions, ‘what laundry detergent do you use?’ ‘Have you considered natural alternatives for skin care products?’ (OH MY GOODNESS. Yes I f***ing have.) ‘Are you moisturizing'?’ (Inner screaming and punching. I know they’re just trying to help though). ‘Have you thought about cutting out dairy and gluten?’ (Both of which I do not consume. And my whole life revolves around what I can and can’t eat) ‘Are you sure you haven’t been rubbing poison ivy on your body?’ ‘Have you considered living in a bubble?’

Ok, they didn’t ask the last two questions. But at the end of the appointment, they refused to treat me any further with allergy shots.

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Random things…

I’ve done oatmeal baths, baking soda baths, bleach baths (yes, it’s a thing), epsom salt baths and bentonite clay baths. I’ve tried an infrared sauna (holy cannoli, the sweating made me unbearably itchy itcherooskis). I have HEPA filters in my home, all natural cleaning products, all natural hair and skin products. Like really natural.

I’m removing non-stick pans because I heard chemicals can leech out of them into your food (Go watch the movie Dark Waters, a true story about a lawsuit concerning Teflon/Dupont. The chemical discussed has since been removed as of 2013, but there are other concerning chemicals within. These are things our grandparents didn’t have to deal with.)

I’m eating all organic, I’ve taken out most grains, obviously I’m gluten-free and dairy-free, I completely took fruit out for a while and now have it minimally (because I read that any type of sugar can cause little bits of inflammation). I don’t consume soy, corn, gluten or peanuts. I have a filtered shower head….

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I recently went to another doctor to have a smattering of bloodwork done. At the end of my visit with this doc, I asked, “Do you think any of this could be happening because of environmental reasons, because of what we’re spraying on our crops, absorbing weird chemicals and such?”
Immediately she said, “Yes, definitely, I think you’re at the forefront of what’s going to happen to a lot of people,” that is, diseases caused or exacerbated by our environment, from what we’re putting in the soil, on the crops, and because chemicals and other toxic substances we’re putting into products, because of what we’ve leeched from the soil and because of what we’re adding to products, etc.

“I’m only saying this because you asked,” she laughed after explaining what we do in the healthcare, agriculture, food and pharmaceutical industries is sometimes nonsensical.

Last night, I ate blueberries and oats, and all through the night I was itching and scratching like a mad woman, and after a fitful two hours of sleep gathered over a ten hour period, I awoke with my eyes nearly swollen shut and expansive purply red circles hugging my eyes. Something is wrong with my body, and maybe something is also very wrong with the blueberries and oats. Or the soil they’re grown in, perhaps.

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I meant to write about how this whole experience has changed my life, and how I view everything so differently now.

And I do. It has changed me, and I hope that even if I eventually heal from this, I’ll maintain the new perspective, that I will still be unbelievably grateful for the day I can have a cup of coffee without worry of my body’s reaction, that I will still appreciate my legs and how they carry me through life even if it sometimes hurts to move them, that I’ll understand and fully realize that how we look and what we can do with our body DOES NOT DEFINE US. I still have to tell myself this over and over again, after being someone who ran, biked and hiked all the time. Someone who used to jump off bridges, rock quarries and waterfalls into a wrap-around blankets of water. Someone who ran up and down steep underpasses just for the fun of it. Someone who solo-camped all over the states in the middle of deserts and atop mountains.

I don’t want to feel sorry for myself or seek a pity party. Which some of this may seem as such. But I still feel these things, whether I should feel them or not.

This phase of my life has been the most difficult period in my thirty years on earth. But, I feel like it’s been the most revealing period of my tenure. I’m learning a grand amount about myself, about what matters, what I can endure. I’ve experienced extraordinary kindnesses from friends, family, coworkers and sometimes strangers. I am more grateful for the moments and hours that I feel good in my body. I’m thankful for all that my body can still do.

Sometimes I wonder if there’s some piece of me that is perpetuating this suffering… because as horrible as it is, in some ways it makes me feel more alive than ever, more connected to my body and the rest of the world. It forces me to understand and acknowledge what is truly important. But I also feel like it has stripped the life from me. I feel like a large piece of me has been locked away in some underground dungeon, and I can’t see my way out. I feel like a failure. I feel like I’m failing the people who are closest to me. I feel guilty being the sick wife who can’t do much of anything right now. Feelings, feelings, feelings. Bleh.

But I was told not to think or say such things—by a couple of people, by one of the persons I most feel guilty toward (If it’s even possible to feel guilty ‘toward’ someone). In the past, whenever grappling with something difficult, I’ve always just run away from others.

Like a sick dog who runs away, hides under a house, to die. Not to be dramatic or anything. But I’m not really in a phase of life where it’s acceptable to just run away from everyone. (Not that it’s ever exactly acceptable or recommended.)

From my journal: January 26th, 2021, being dramatic and stuff:

“I feel soft today. Softened. I’m moving softly and feeling things softly.  Whenever I am in great pain, I must move through the world this way.  But it’s not all terrible, I tell you, it’s not.  It slows me down, helps me to notice things, to appreciate, to care only about what one should care about.”

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As I said, sometimes I relish being in this state. It’s like being in a state of hypersensitivity every minute, every second, everyday. I’m on. I’m alert. It hurts. But it makes everything magnificent that before was just mundane.

Pain has a way of doing that to us—making us feel more alive, like we’re really in this, everything is more acute, every detail and delicate piece is laced and etched into our being. Without the pain and heartache, chaos, brokenness, what would life really be? This is the stuff of life.

Humans were built for this. We have endured unimaginable pains and grief and wars. I don’t think we learn too much when things are going all happy, go-lucky all the time. Yes, we sure need those bright yellowy phases, but the shadowed, excruciating parts carve a way to unimaginable joy and awe. We just have to go looking for that grandeur sometimes.

(Man, I sure am sounding a touch dramatic.)

I’m not saying it doesn’t totally stink in the moments and years of tribulation. Because it does. And it doesn’t feel all poetic and lovely when you’re awake, alone, in pain, in the middle of the quiet night, the whole night, for the 246th night in a row.

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This past year, we have been stretched beyond our capabilities, beyond our breaking point, or rather, the breaking point we thought we had.  But we’re still going.  We’re still showing up.  Maybe it’s not the prettiest, maybe it’s chaotic and messy and terrible and uncomfortable and we just want it to end. But we’re still here. Maybe we’ve lost some loved ones, lost pieces of our lives and replaced those pieces with another one. But if you’re reading this, you’re still here.

Tony Robbins (ol’ T-Rob) once asked Nelson Mandela, who had been unjustly imprisoned for 27 years, how he survived during all of that time. Mandela said, “I didn’t survive. I was preparing.” I’m certainly not comparing my situation or yours to the apartheid revolutionary, philanthropist, political leader Nelson Mandela’s. But I think that’s what suffering is for all of us. It’s building armor—the good kind, it’s preparing us for whatever we are to encounter and grapple with next, it’s strengthening us. We sure as heck have been preparing this past year—all of us collectively, around the world. And you’ve probably been on your own specific arduous expedition. We aren’t just surviving though. We are learning and growing and discovering and realizing we have more to give and more to do and be. We can push more, even if it hurts like hell.

So I’m here to keep on pushing and to keep on showing up. Are you?

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Whoops that went on a tangent. If you’ve made it this far in my writing, you deserve a medal for this arduous reading expedition.

I don’t feel like writing more, so I’m just going to end it …..here.

Cheers, and thank you for showing up.