Health

Head Case

I gave him a side glance and a half smile and he stopped what he was doing and just stared at me.

‘What?’ I asked, annoyed with ev-er-y-thing.

‘Nothing, I just figured you were going to tell me I was doing something else wrong.’… he trailed off.

I turned back toward the sink and he turned away to continue chopping lettuce, obviously he’d been annoyed with me, as well. And my big, fat face let out a silent waterfall of tears. I flipped on the garbage disposal to drown out any of my sobs and watched as the gush from my eyes also filled the sink basin. All the disappointment and embarrassment and misunderstanding spilled out while I half scrubbed a pan that was laden with day-old eggs.

We had just gotten back from a doctor’s appointment in Cleveland that I had finally found the nerve to set-up (after some pushing from my husband when I thought the onset of Covid was me miscarrying some surprise baby… another round of wishful thinking fell to disappointment… another example of me being ‘crazy’).

After a 5 hour drive round-trip and an hour and a half of talking about my allergies, cramps, back pain, headaches, diarrhea, nausea, and sporadic bleeding with yet another specialist, I guess I wasn’t in the mood for everyone else’s thoughts or feelings, and my own feelings were too overwhelming to hold in anymore.

Immediately upon walking in the door, without so much as a ‘hi Mom’, I was bombarded by three littles ones and their needs. One boy needed a ‘special drink’, another wanted a snack, and the third was dancing around in the kitchen asking what we were having for dinner. I had had enough!

I slipped out of the kitchen and up to the privacy of my room where I could really unleash my ugly cries. I thought back to the day’s events and the conversation I had had with another physician.

“Listen, most of the time I’ve spent in doctors offices over the past 8-10 years, I have felt crazy,” I explained to this new doctor. She was starting to give me ‘that look’ that all the other doctors have given me after they’ve heard me explain my experience or rattle through my symptoms. There’s a point in each appointment where I can tell I am losing their genuine interest or care to the next patient who was waiting. My case is simply not ‘by the book’ and my willingness to try ‘standard protocol’ is not there. So then I start second guessing myself and I begin telling myself that my ‘issues’ aren’t all that bad, anyways… So I retract and downplay the reason I made the appointment in the first place.

Yet again, I started to sense she felt I was a lose-lose patient and so I began pulling back on the details or the severity of my symptoms. 

I’ve seen quite a few different primary care physicians, chiropractors, and specialists now, and my feelings towards the medical care we get in good ‘ol USA is relatively negative. I am just a number and I get standard A + B = C response. 

But the truth is, you only know what you know until you know what you know. I guess I’ve never understood why doctors, of all professionals, wouldn’t look more outwardly and more holistically? What I’ve come to learn over the past decade is that absolutely everything is connected. If you only surgically remove this-or-that, you don’t see how diet or exercise influences the underlying problem, and you definitely have no idea how excessive stress or anxiety and depression affect it. Wouldn’t a simple question like “How have you been feeling mentally and emotionally, recently?” tell you more than a symptom like a headache?

I’ve asked various providers in chiropractic and nutrition and in OB GYN what comes first: anxiety triggering the hormonal imbalance or a hormonal imbalance that triggers anxiety and depression? What comes first: the chicken or the egg? No logical answer.

My husband is going through something similar with back pain after lifting weights in the gym. He had back surgery in 2010 and as soon as he mentioned that to a physical therapist (a decade later) that’s all the PT focused on. But the pain is not the same as it was, then. So, he’s been studying and stretching on his own. Just like I have been for years and years and years… Fortunately, for him, he is an objective studier; it’s the lawyer in him. But we’ve both been giving various specialists a shot at our cases and what we are ultimately doing is taking all of the second and third and fourth opinions and marrying them together with what we know about our own bodies. Because honestly, no one is in your body, but you. They truly cannot speak to your pain or situation. But, in my opinion, [doctors] could be more informed on the body as a whole and be more familiar with actual case studies instead of only focusing on the repetitive nature of symptom = Rx trial and error.

I liken it to an economist who only studies result charts and their own industry digest magazines. All of the information is one sided. What about what’s happening culturally? Cultural dynamics can absolutely affect markets and financial statements. We’ve especially seen it throughout the pandemic while many Americans only saw what their political party presented or what the media and their fanciful marketing campaign handed them. Truly, the publication of covid spread faster than the disease itself! And, quite possibly the covid vaccination campaign will go down in history as THE marketing campaign to yield the highest return in the shortest amount of time. How can you not look outside your fears and see the big picture? Why is it stopping you from researching and making calculated decisions rather than relying on a political party and their agendas? If you ask yourself, does this messaging have an agenda and the answer is some sort of a ‘yes’, then QUESTION it.

So back to this umpteenth doctor’s appointment with a specialist 2.5 hours away…

I said to her, “Listen. I apologize if I sound a little bit crazy but truthfully, I feel a little in the dark about all of my options even after hearing from other doctors.” She was nodding and smiling so I went on. “You’re one of the first [providers] to sit with me for more than a few minutes and answer all of my questions. My last doctor would compliment my shoes or my necklace and then hightail it out of the room. So please, tell me what you think – compared to other cases you’ve seen, how would you rate my diagnosed endometriosis and adenomyosis, comparatively?”

She chuckled, cleared her throat and then pointed to the imaging of my uterus that I had brought with me from a year and a half ago when I was last opened up. “If I had to put a rating on your endometriosis from what I see here and from my brief physical exam as well as what you’ve described, I would place your levels of severity at a 4 out of 10. Now, this is not to say that your pain isn’t real or as bothersome as someone else’s – it is – but that’s what’s so challenging about studying endometriosis: everyone’s pain sources and pain levels are so different and not necessarily related to the visible scar tissue.”

My heart sank but also I felt relief. I was relieved to have someone be honest with me and talk to me like I was more than a number, and I was also relieved that she’s studied this specific disease a lot more than most and she didn’t think I was someone to worry about….

But I still left the appointment at the same starting point I came in with. And I continue to live through the pain and the discomfort, today.

So this takes my thoughts one more direction…

I think I’ve been labeled a head case most of my life. Which makes sense because I’ve even worried about being worried, and that’s very easy to do when you’re stuck in your own head and you just. feel. so. damn. much.

The people in my life have often downplayed my symptoms or told me to quiet my ‘hysteria’ over my various ‘issues’. I’ve been told it’s all in my head.

But after years of feeling ashamed for feeling things so deeply, after therapy sessions with professionals, after a focus on myself and my own healing through diet and exercise and journaling, I have determined that I am not a head case. I am not making my symptoms up. I am simply allowing myself to FEEL and to question. I have also learned one very important thing: I can let any of these feelings pass without any action at all. And this realization was a game changer for me. 

So, here’s to all of you fellow ‘head cases’ out there! For, to me, you are the smartest of them all! May your feelings take you places other emotionally constipated people can’t go. I’m confident that those of us who allow ourselves to feel are the ones who will ultimately make a difference. Why? Because we will hear other folks and we will understand. And if we can understand and relate and be relatable, then we are already lightyears ahead when it comes time to make change.

They say that music can bring people together. I wholeheartedly agree. I’d like to think that it’s the emotion that music evokes that unites us. And if it’s the emotion that unites, then those of us who are already comfortable in our emotions will be the last ones standing and I’m so glad that we’ll be standing firmly together. 

If you have endometriosis and adenomyosis tips to share, please don’t hesitate to reach out to me! I know that the more we share, the farther we’ll get in circumventing this issue for our friends and family members, and especially our future daughters.