MRI

Most. Ridiculous. Instrument. ever.

I can see right through people. Three years ago at Cleveland Clinic when a doctor at the Spine Institute looked at my MRI and looked at me and told me I was fine…I knew he was full of shit. This was the beginning of my uphill battle with my health insurance and health care.


“Surgery bad.” He said in an accent.

His way of being suggested to me that he was a believer of holistic medicine, and so was I.

But I had tried everything.

This is Part one of a post about listening to our bodies, going with our gut feeling and not giving up.

Several months ago I laid down on the narrow, cold, hard table of the MRI machine at Hamot hospital. For all the Moms out there– I know that you know what it is like to be unable to lay on your back. during pregnancy. I was about 7 months postpartum and still unable to lie down on my back because of a damaged lumbar spine. As I learned to adapt my life more and more to my state of chronic pain, I simply stopped trying to fight battles that I knew I could not win. One of those battles was attempting to sleep horizontal, on my back. Yet, here I was at a hospital for a lengthy diagnostic test that would require me to be in this position for over an hour.

So here’s how my (SECOND MANDATED by my insurance) MRI went:

The tech. came into the room and asked the usual questions.

“Are you claustrophobic?

Are you feeling okay?

Would you like to listen to music?”

To which I responded,

“No.

Yes.

Just put on some classic rock.”

After I slid into the clamorous capsule known as the MRI machine, I tried my best to practice meditating.

Okay Clarissa, this will work best if you can quiet your mind which will in turn quiet your muscles and ligaments. Where are you holding tension? Release it, release, release...I wonder when that banging noise will start?!

***Insert first loud banging sound of the machine and cue Clarissa’s relaxed body levitating off of the table***

You okay in there? the tech chimed in through my headphones.

Yea, I’m fine (the number one biggest lie I’ve told people).

Okay, where were we? Back to relaxing....relaxing...

This is painful. Ya know, I thought I could out think this pain for one day, for one hour, for a few moments. But this truly is a position I can not remain in. How will I ever last in here for this procedure? How will I last 4 more minutes? Breathe....breathe...breathe.

While I lie in one of the most painful positions my pre-surgery body could be placed in I reached several rationalizations. In that moment I knew I was severely broken. At times when people questioned my condition and if I had anything wrong with me I would actually start to ask myself,

"Is there ANYTHING wrong with me? Are these pains normal? Or, have I gotten better over time but tricked my body into believing I'm still in a chronically pained state? Maybe I need to re-train my neural networks?"

On this day I was kind to myself. I heard my husbands words from a year ago,

“Hunny, you need to get surgery. I know several men that have had surgery and they are doing so much better now. You aren’t going to get better.”

Just as I began to mentally drift out of my pain signals, my table started sliding and I heard the tech speaking to me from behind me and not through the speakers.

Are you okay?”

Stunned…I answered, “Yes, why?”

“Well you are doing a whole lot of moving in there.”

“I’m sorry ma’am. You see this is incredibly painful for me.”

“Well the sooner you cooperate the sooner we can get you of here.”

Right...because my goal is to be a rebel and stay on this fucking table all morning in pain.

“Okay, I’m doing my best. I think I got it.”

I crossed my arms over my chest, and one ankle over the other and got into my best “water slide” position so not to get caught on the capsule in the way in. I don’t fail at much. If I’m not good at something I either:

a) get good at it.

b) just don’t do it.

Okay, back to me on a table pretending to be going down a speed slide…

There was no way my body was going to allow me to sit still long enough for this MRI. I was going to fail.

You see, I like to think that my self-awareness is pretty high. For example, If I’m sipping an IPA and notice a fluttery feeling, I exclaim, “Whew, think I’m catching a buzz!” Whereas, someone else I know (that might live under the same roof as me) will stumble around exclaiming, “I’m not even buzzed.” Sorry lover. I knew from the moment we re-started my MRI that it wasn’t going to work. It was a torture.

I was failing being good at MRI’s.

**Laughs to self.**

This time the tech spoke to me through my headphones–

“You’re moving quite a bit.”

“My back, it’s uh just having a lot of muscle spasms…they are pretty involuntary.”

This went on for about another 40 minutes. FINALLY, this woman called it quits and aborted me out of the capsule. I went to log roll off of the table and could barely move. I was in excruciating pain.

“Well, we will see if these work. I think they are going to be pretty blurry.”

Awesome.

I walked out of the MRI room down the hall and immediately into a bathroom/changing area. I set my belongings down on a shelf, and allowed myself to whole-heatedly feel all of my frustration.

Just once, just one time I wanted the health care system to seem like it was on my side and not against me. My hope for seeing this new doctor, re-submitting my MRI (because my last one expired due to being pregnant) once was again being challenged. I walked out of Hamot to my routine parking spot on the top floor of the garage (because, yes, I have an intense fear of someone scratching my truck) and I drove home.

This was the day I knew I needed surgery.

I processed my thoughts and feelings on my 1+ hour plus commute home from Hamot. I felt liberated. After entertaining the thought of surgery, and thinking there were more cons than pros, I realized I no longer had a choice. Something was REALLY wrong with me and I could feel it deep down in my bones…literally. And even more importantly, my very skeptical husband also knew something was really wrong. When I arrived home I told him I was ready.

My doctor, Brian Dalton, M.D. at Tristate Neurology in Erie, PA followed up with me. He explained that I had a central disc herniation at my L5-S1, and in just two years there was significant degeneration in my Lumbar Spine. His PA explained to me my options saying,

“I’d hate to see a young woman like yourself go through such a surgery. But there is a good chance you would get your quality of life and mobility back.”

I want to do it. I have no reservations anymore. Now I know why people get surgery. This is the only option I have. I can’t be a good wife, a good mother, a good employee or a good human anymore. I’m struggling to be happy and to look forward to the future anymore. This isn’t fair to my family.”

“Well let’s get you scheduled.”

(TO BE CONTINUED)

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In Sickness and in Health…

Life After a Spinal Fusion

Flashback to Monday (4/08/2019)…

This was just another day. I log rolled out of bed, my feet hit the floor and for a moment I pretended to know what it felt like to wake up happy. This was a mental exercise I became quite good at after the birth of my son. It usually started with some quick, internal guided imagery. I would blast back to somewhere around 8 weeks postpartum:

I would visit a memory of my husband holding our son, in his nursery, while also holding me.

“Rhett this is your room. Mommy and Daddy made it just for you.”

That memory has always been enough for me to evade my pain and remember, it’s not about me anymore. A little 9 month old wonder is completely dependent on me.

This Monday I did my normal thing. I quickly glanced at my Outlook calendar, while sipping my coffee, while the local news radiated in the background.

What meetings do I have today?

Any with my superiors?

How many details do I HAVE to disclose about this surgery scheduled for next week, that once again has been denied by my insurance?

Who will think I’m full shit of today?

Should I stop wearing make-up?

Maybe if people see the chronic black circles under my eyes they will take me more seriously. I guess…then I should stop wearing sunless tanner…and heals. But then, will people tell me to “smile” and ask if I’m sick?

Damned if I do…and damned if I don’t.

I’ll stick to my usual. At least when I look in the mirror I will be able to feel beautiful for a moment. For my own sanity. Even if my body is screaming at me in pain.

For three years I have been viewed as a liar. Our broken healthcare system did not want to treat me because I’m “too young.” Before I make this all about chronic pain, I’d like to first point out the mental agony this type of bullshit has caused me. That’s the side of pain that people don’t know exists, unless they themselves are chronic sufferers. For three years I’ve heard:

If your back was broken or hurting you’d be crying (side note: for the first 2 years I DID cry. I just tried to do it on my lunch break, outside, in my truck).

You are too young to have back problems.

You look fine (see orange text above).

Sack up!

Oh my friend had back problems and he is on disability. If you were bad your doctor would give you pain pills. You’d be on disability.

Must not be that bad if you are carrying (with child) a baby.

To address this small list of bold statements in their entirety would require me to write a book. So I will focus on the last one.

My husband and I made the executive decision to have a child no matter how much pain it would cause me. We knew pregnancy would be hard(er). We knew that it would challenge me mentally and physically. We also planned for the reality. My husband promised to be there for me. He left his job when I was 6 months pregnant. It was now or never. We weren’t getting younger.

  • We wanted a child.
  • We budgeted our income.
  • We renovated our entire upstairs into what was my dream floor plan.
  • We created incredible memories together preparing for our son.

And we did it all as a team. He came through with his promise, and then some. I have no idea how we as a family would have ever survived without him here daily.

To get back to the main point of this first post, in a series about my health condition (stay tuned) the back pain was second. The mental hell I lived in daily was first. At first my own family, in-laws, boss and even husband weren’t sure of what to make of my sudden complaints about pain. It really seemed that no one believed me.

My husband began to believe me when I stopped doing everything I loved. The gym had been my sacred space for coping with some awful shit that happened to me years ago. Due to my new back condition I simply could no longer find refuge at the gym. This was alarming. When I met him I had two gym memberships and told him,

“Gary, if I’m ever off do these two things. 1. Ask me if I need to eat. Offer me a cheeseburger. 2. Send me to the gym.”

Being judged about my pain, and constantly doubted, made me hyper defensive. I felt I  had to validate my next round of physical therapy, or my lengthy appointments at Cleveland Clinic, why I need to physically be dragged out of bed on a rainy day, or why mid-lecture at a college I would need to go sit down instead of stand at the lectern (despite being one of the youngest and fittest employees). 

What made everything worse was that my own insurance company was unwilling to see that I had a problem. This is when my own colleagues and friends, and colleagues who I viewed as friends really started to think I was nuts.

Well, if it’s so bad why won’t your insurance approve your surgery?

I did not have an answer. I had nurses telling me that a peer-to-peer would clear it up. It did not. So then the speculations of me having a “made-up condition” continued to grow.

Remember how I said I lost friends? People I really loved and valued from my younger years were suddenly enemies that only hindered the little bit of optimism I had left in me. I try to be a forgiving loving human. But to you–you few people know who you are. FUCK YOU! 

I walked down the aisle in chronic pain. I went through my masters program in chronic pain. I started a new job in chronic pain. I went through 42 weeks of pregnancy in chronic pain. Three years of broken sleep. Numerous nights of fighting with my husband all because I thought no one cared or believed just how bad it was.

Cue Dr. Brian Dalton and his incredible team. They were the first people who listened.

On April 15 when I awoke in the ICU recovery room after a 4+ hour surgery I knew that my life was going to be better. Instantly. All of the screaming pains that once radiated out of my left hip joint and lumbar spine were silent. I called for my nurse smiling and said,

“I feel so much better! I have to tell my husband!”

When they called my husband and he turned the corner to look at me I will never forget it. I grabbed his hand and started to cry. This time tears of happiness.

My surgery went longer than expected, because my lumbar spine had more complex issues going on that weren’t expected. Finally. It all made sense. The doctor had to spend more time chiseling an almond size bone spur off of my left hip joint. I had spurs and cysts around my spine. My L5-S1 were almost completely touching. Nerves were tangled up in the mess. My spine had to be jacked 8 mm apart. Two levels up required laminectomies. I had a bone transplant scooped from my pelvis, put in place for my planned spinal fusion. Two titanium rods, 4 screws, a 7 inch incision, and 15 staples later I was shipped to recovery.

The first thing I told my husband was how sorry I was.

You see, my husband is not the normal Dad. He does MORE. He does more than both of us ever expected he would need to do. He has changed every single night-time diaper, because at night I could not get out of bed quickly enough to safely function with a locked up back. When I nursed at night, he would carry Rhett to me every single time. After Rhett turned 6 months old, it became almost impossible for me to carry him at all. So, Gary did that too. And now Gary takes care of both of us. Although the surgery is so far a huge success, for 10 more weeks I am not allowed to pick up our son.

Although my husband and I have been together for almost 5 years, 3 of those were wrecked by this whole situation.

For the past 15 days I have greeted each day with gratitude and optimism that we might be able to get our old lives back. Someday we might be able to cuddle each other to sleep, hug, race each-other across the yard, or surf the fields baling hay like we used to.

I’ve wiped the tears away from my eyes several times writing this, and it’s time for me to retire to my bed…where I now sleep in peace.

I have now made it a daily practice to pray for those around me, but also people I do not know who are in chronic pain.

Thanks for reading.

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Shred the bar…I mean gnar.


This post was typed into an email, to myself on January 3. It has imperfections because I typed it with my thumbs on my cell phone.

As I sit at the Foggy Goggle, wearing my husband’s old snowboarding boots and board pants that are too tight on my postpartum hips, whilst sipping my IPA…i covertly observe the two,young, women across the bar delicately eating nachos. With their perfectly manicured finger tips, and with precise precision they place one nacho at a time between their red lip pouts. Their profiles are perfect with their teeny noses…almost like whos but not ya know…then there’s me with my honker of a broken nose from my soccer days.

I am reminded of the younger woman I once was, with my priorities that were completely out of whack. My mood depended on a number on the scale. Whereas today, my mood elevates just thinking of my son or my husband and how beautiful, incredible, instant, amazing motherhood is. Motherhood did what years of therapy probably could not do for me, it made me shed my ridiculousness. 

Why am I sitting at the Foggy Goggle instead of boarding with my husband, writing this whole thing with my thumbs and my cellphone? Well because an IPA feels better than a broken ass. The slopes are icy, and my lumbar spine is herniated. Also, I’m daydreaming about how great it is going to feel when I pick my momma chirping 5-month old up and he presses his cheek against mine.

Birth.

“You’re time is gonna’ come” blared from the speaker of the hospital television.

At this point it could go either way—

Would I be blessed

Or I would be cursed?

I pushed and felt the universe surge a great pressure…and then purge a release.

He’s so handsome!

A proud father exclaimed.

What no one knew was that I lie there staring at the fluorescent light in the ceiling, in a way that an image reflected

The grotesque image was a woman lying on her back, torn, bleeding, and stunned

Would I ever be the same?

Definitely not.

Would I ever be better?

Definitely not.

When I held my son years of speculation were confirmed

Women are goddesses that walk the earth clothed in societal norms that downplay their powers.