I’m Still Here

I haven’t written a blog post in quite some time and I wanted to come tell you why. If you follow my Facebook or Instagram page, you’ll know my health hasn’t being doing well. In the last 9 months, I’ve been cut into five different times and admitted to the hospital more times than I can even count.

But I’m still here.

In April 2020, I have an occipitocervical fusion (skull-C3), but as I recovered, many of my symptoms got worse. I never really got better. My neurosurgeon had thought that my symptoms were primarily attributed to craniocervical instability, but when we treated the CCI and nothing changed, he started looking in other directions.

On October 26, 2020, I had a tethered cord release surgery. When I went into that surgery, I hadn’t been able to walk for 15 months. My left leg had been paralyzed for 465 days. But when I woke up, I could move my leg! I could wiggle my toes. Tears of joy flowed from eyes.

My recovery from the tethered cord release surgery was tough. I came dangerously close to losing my life, on my birthday (November 7). And one doctor even told me that if I hadn’t come in on my birthday, I wouldn’t have had another one. I was dying from a massive staph infection and I didn’t even realize it.

The staph infection really slowed my recovery a lot, but I persisted and the second week of December, I got my PICC line removed and was able to return to outpatient physical therapy.

The day after Christmas, I started walking on my own – unassisted. No cane, no crutches, no walker…just my own two legs. And I can’t even begin to explain what that joy felt like. I started walking and I didn’t look back. On January 9th, I walked 1.85 miles ALL. BY. MY. SELF. Every step was a testament to how much I’d pushed through to get to this point.

But on January 10th, I turned my head and something in my neck popped. After the pop, my face went numb, my arm went numb. I’m not going to lie, I was scared. The next day, I went to my local emergency room. They admitted me overnight to keep an eye on my symptoms and get a lot of additional imaging. Turns out, that pop caused a loosening of the screws in my skull-C3 fusion.

My head was falling off. Again.

The neurosurgeon on-call put me back in a c-collar and told me to stay in it until I could see my doctor. Putting the collar on did help to alleviate the intensity of my symptoms. So much so that I couldn’t tolerate being out of it for more than 10-15 minutes.

Over the course of the week, the weakness and numbness and tingling and pain in the left side of my body got continually worse. By Friday, I couldn’t walk normally anymore. I was having foot drop in my left foot. My whole left side felt weak.

I saw my neurosurgeon on Friday, January 15th and he confirmed my fear that I was going to need another surgery. There were a total of three loose screws; one in the skull and one in both C2 and C3, both on the right side. Also, C3-C4 was herniated and had caused narrowing of the spinal canal.

I broke down in my surgeon’s office. I told him how scared I was and that I couldn’t go back to not being able to walk. He reassured me, that although this did need to be fixed urgently, it was fixable. So surgery was set for Monday, January 18th and I went home to enjoy the weekend with my children.

Surgery went smoothly. No hiccups. I spent a few days in the hospital for pain control, but by Thursday, January 21st, I was back at home. On January 23rd, I walked half a mile, around my neighborhood. I sat down and I cried with joy. I had lost the ability to walk for so long and I will never take it for granted again.

By the evening in January 23rd, I had begun having an increasing amount of pain and my incision was looking very res and swollen. After the staph infection I had after the tethered cord release, I wasn’t taking any chances. I contacted the on-call neurosurgeon, sent them some pictures of what it looked like, and they e-scribed some antibiotics.

But the antibiotics didn’t make any difference. That night, the incision started draining a lot. Like, an excessive amount. By Sunday night, I was back in the ER, being admitted, with the plan of going back to the OR the next morning. I had developed a fairly large seroma (a collection of fluid, like an abscess, but without an infection).

Monday, January 25th, I went back into surgery. They cleaned out the wound and placed a drain. There was no apparent infection, but they also sent off cultures of the wound to make sure. Imagine the surprise when the cultures came back positive for pseudomonas. They were pretty aggressive with the IV antibiotics and then discharged me on a course of oral antibiotics.

So I’m back home now. I’m recovering. I’m healing. But, man…..has it been a wild ride. I’m hoping that my body will keep it together, now, for at least a little while. And I’m hoping that it won’t be another five months before I write another blog post. But life with chronic illness is forever unpredictable. I have no clue what’s going to happen next, just that I’m going to push my way through the same way I always do.

I’m burnt out. But giving up isn’t an option.

Did You Know…

Did you know that I wake up every day with at least two joints out of place? It’s usually my hip and shoulder, but sometimes my fingers, elbows, or knees will take a turn too.

Did you know that I haven’t taken a shower standing up in over 2 years because I’m a dangerous fall risk?

Did you know that I have a hard time leaving my house because of the number of stairs I have to go up and down and the amount of pain they cause?

Did you know that my muscles are constantly fatigued and overworked from trying to hold my joints in place?

Did you know that one of my biggest fears is my children finding me unconscious and/or injured from a fall?

Did you know that I taught my kids how to call 911 and go get a neighbor for help if they did happen to ever find me unconscious?

Did you know that I can’t stand long enough to load dirty dishes into a dishwasher?

Did you know that I can’t bend and/or lean to put laundry in the washer or dryer without excruciating pain?

Did you know that I can’t work but I also can’t get disability benefits because I’m married?

Did you know that I’m scared to burden other people with my medical problems?

Did you know that on the good days, I struggle with imposter syndrome?

Did you know that every single day is a struggle with depression and anxiety that are directly caused by the pain and the lack of treatment I’ve received for the pain?

Did you know that I function every day at pain levels that most people wouldn’t get out of bed with?

Did you know that I struggle with guilt, as a parent, for not being able to, physically, do more with my children?

Did you know that having chronic pain literally changes the chemistry of your brain and can change the very fabric of your personality?

Did you know that it’s hard to enjoy and experience life when simply existing is excruciatingly painful?

Did you know that when I go to the doctor, I have no faith in their ability to diagnose or treat what’s wrong with me?

Did you know that when I ask for adequate pain management, they treat me like a drug seeker, even though I have multiple, diagnosed conditions that cause severe pain?

Did you know that I have been neglected and abused so much by the medical community that I am more scared of them helping than not helping me, at this point?

Did you know that I have severe medical PTSD and I am terrified going to doctors offices or hospitals or even to make phone calls to doctors offices?

Did you know that I have been gaslit and told I was just fat and crazy by the very people who took an oath to help me, when in reality, my head was, quite literally, falling off?

Did you know that, sometimes, I’m just sad that this is what my life has come to and I miss the life I used to have?

But did you also know…

Did you also know that I write beautiful poetry?

Did you also know that I have a kind heart that cares deeply for others?

Did you also know that it’s only because I’ve known such deep pain that I’m capable of such immense compassion?

Did you also know that I go out of my way, every day, to find at least one thing that brings me joy because I understand how fleeting time is?

Did you also know that I consciously remind myself to choose joy, constantly, because if I don’t, my brain will very quickly end up in a downward spiral?

Did you also know that I am sick, but being sick isn’t all of me?

Because, incase you didn’t also know, I’m a warrior.

Inside the Body of a Zebra

“Jacquie, don’t be dramatic. It can’t be that bad.”

I exist inside a body with bones that don’t stay in place. My tendons and ligaments and weak and stretchy. Which means that every single muscle in my body is forced to work overtime. All the time.

You see, in a “normal” body, the muscles will fire and contract when they need to be used and then they rest when not in use. It’s a pretty efficient system. But in my body, in Ehlers-Danlos bodies, all the muscles are fired all. the. time. In Ehlers-Danlos bodies, our bones are so bad at keeping themselves in place on their own, that our muscles are ALWAYS fired. Our muscles are always working to hold every joint in our bodies in place.

Every joint in your body has the capability to dislocate or sublux. And I can’t even tell you how many times a day I have to put my own, out of place joints back into socket with no help or pain medication.

“So why are you tired all of the time, then?”

You want to know why we are so tired all the time? Because our muscles never get to rest. You think we get to rest when we sleep? Guess again, even when we’re sleeping, our muscles are still trying to keep our joints in place. Although, at night, my muscles do a much poorer job of keeping everything where it belongs.

We have no energy left to live when we are using every ounce of what we have trying to simply exist.

We don’t actually relax, not really. We just…lay in less painful positions.

“So why don’t you take muscle relaxers to help relax the muscles? Won’t that help the pain?”

Good question. The answer is yes and no. Most of us desperately need some type of muscle relaxers to get the unrelenting muscle spasms controlled. But, the downfall of muscle relaxers is that they do exactly why they say they do, they relax the muscles. And when you relax the muscles in an Ehlers-Danlos, the bones start falling out of place again. Because it’s the tension in the muscles that helps keep everything in place.

And thus is the cycle. Taking meds that can help simply trades one pain for another.

And then, let’s add in Ehlers-Danlos’ fun little group of friends…CCI, POTS, chiari, MCAS…the pain, the fatigue, the brain fog, it never seems to end.

We’re surviving. Some days, just barely. But we’re surviving, nonetheless. Because that is the ONLY option.

I don’t remember the last time I had a day where my pain was less than a 5. I have MULTIPLE, diagnosed and documented painful conditions and yet some people still seem to expect me to justify my pain.

So if I say that I hurt, then I mean that I hurt and I don’t owe anyone explanation.

For the love of all things holy, please just exercise compassion. Be kind to people. You can’t see their struggle and they may be fighting something you know nothing about.

Thank you for your understanding.

Surviving Pain Through Poetry

Recovering from this last surgery has been hard. My symptoms have been unpredictable and my pain has been unmanageable. My body is worn out and my brain is exhausted. Trying to cope with my declining health when it feels like none of my doctors are concerned, is scary and hard to navigate on my own. So while I don’t know what to say right now or how to move forward with my life in the midst of the uncertainty, I do know how to write…so here’s a couple poems to paint a picture of what it’s like right now…

Scared of the Pain
The days keep on passing
But life stays the same
Every moment controlled by
The unmanaged pain
I’m trying my best
To get through these days
But alone with my thoughts
I realize I’m afraid
This is not what I dreamed
When my future looked bright
Now all my dreams are gone
And I’m stuck in this life
I look in the mirror
And I don’t recognize the face
I fought so hard for healing
And I still don’t feel safe
My legs used to run
I loved the wind in my hair
In running I found peace
And I didn’t feel scared
But now here I stand
I’m scared of myself
I’m scared that my doctors
Won’t be able to help
So many people tell me
“I don’t know you do it.”
But I didn’t get a choice
And I didn’t choose this
I’m holding on where I can
And letting go when I need
But that doesn’t stop the pain
From bringing me to my knees

How Much Can I Take
I know I’ll be okay
But right now, I’m not
I know I’ll be fine
But right now, it’s a lot
I’m scared of my future
And I’m scared of right now
Of how my body will react
Next time a joint goes out
This isn’t what I planned
This wasn’t my dream
Every breath and each movement
My body screams
The thing about pain
Is it demands to be felt
But that leaves me burnt out
Too tired for much else
Every inch of me hurts
Every ounce of me aches
And I really just wonder
How much more I can take

Grieving is a Process

Grief is weird. Like when you think of grief, you think of somebody who has died or someone has lost their job. But grief runs so much deeper than that.

I’ve been grieving pretty hard, a lot lately. I’ve been grieving the loss of the life that I had dreamed for myself. I do know that this is a normal psychological response to what’s happening with my body and that many, if not all, chronically ill people, go through this process. But sometimes, it’s just really hard to just admit that my body isn’t what it used to be. It’s hard to realize that even though I am a healthy LOOKING 32-year-old woman, I am far from that.

Sometimes I’m scared, if I’m brutally honest. I’m scared of what my future looks like. I’m scared of how much my body and my health will continue to decline before we have answers. And when I say answers, I mean solid, definitive answers. Not just a doctor guessing at what the cause of the symptoms may be because it’s not something that looks obvious on any tests or scans.

At this point, all I really want is just the ability to walk again. I want to not be a fall risk. I would give almost anything to be able to just get on a bike and go on a bike ride with my kids again. I used to have dreams of one day running a marathon. Now, at this point, I have accepted that I will probably never run again. HOWEVER, if I can regain the ability to walk, I will find a marathon that allows walkers and I will walk every bit of that 26.2, because I haven’t given up on that marathon dream just yet.

I think one of the worst parts of it really is just not being able to have control over my own circumstances. Because when you’re chronically ill or limited the way I am you have to depend on other people. You have to just hope that people will be there for you. I’ve been lucky enough that I do have people like that in my life. I do have people that I can trust and depend on…but unfortunately not everyone has that same type of support system.

Grief is hard because grief doesn’t end. This is something I’ve been struggling with for years. Each time I lose another ability, for something that I have always done on my own, each time I have a new symptom that no one can solve, it takes a toll on me. Each time a new symptom pops up and changes my ability to function on my own, my heart aches just a little bit more and the grieving process starts all over again.

Grieving is a process. No matter what you’re grieving. It’s not something just happens once and then you’re good and you’re over it and healed. Grieving is painful and it’s messy. Grieving happens over and over and over again. Grieving happens on a daily basis. Sometimes for days or weeks or even months. There’s no timeline on grief.

But the purpose of grieving, is being able to accept this new reality for what it is. This is not what I wanted. This is not at all what I had planned for my life to look like. But this is what it is. And it’s on me to make the best of it.

I Am Part of the “Only”

So many people out here are running around right now saying, “this ONLY effects the elderly and people with pre-existing conditions.” And because the risk doesn’t directly effect them, they’re not taking social distancing seriously.

And to those people I say…STAY HOME AND STOP BEING SELFISH!!!! Seriously!! Stop going out unnecessarily. Stop putting my life at risk because you’re too stubborn to make changes in your life for the next few weeks. THE PUBLIC HEALTH IS NOT WORTH YOUR CONVENIENCE!!!!

The world is in a scary place right now. Nothing makes sense and everything feels surreal. In the last 48 hours I’ve gone from mild concern of the issue to holy crap, this is going to be bad if people don’t start thinking about the word as a whole. Selfish and panicked people are overreacting and buying out stores like it’s the end of the world. While selfish and stubborn people are continuing to spread germs without regard to the effect that it has on those in the high risk population.

I am part of the “only.” I am a wife, a mom, a daughter, a sister, a friend. To you, I am an only. To my family, I am everything.

When you ignore the guidelines for social distancing, what you’re really saying is that you believe your convenience is more important than my entire life. And honestly, what kind of trash person actually puts their convenience over the living, breathing lives of hundreds to thousands of people.

Please go home. Spend time with your family. Spend time with yourself. Learn to grow as a human being.

During these uncertain and scary times, the best we can do is the best we can do. Everything is rapidly changing and you never know what to expect next.

Please just have consideration for the other people in this world. Be kind. Share hope and love. Understand that the threat is real, but the threat doesn’t have to define our lives.

Because Positivity is a Choice

Why do I choose to be positive about negative situations?

Because in a world where I have very little control over anything, I do have control over how I choose to respond to my emotions and circumstances. And if I choose to respond negatively to my emotions, then my negative attitude becomes a result of my own choices. It took a lot of hard work to be able to understand that this is a conscious choice that I can make. But my life has become infinitely better because of the process. Some people’s brains are naturally positive or they have the right amounts of dopamine and serotonin and this comes easy to them. But others, like me, have to make this a conscious choice and make a deliberate effort to train our brains to think positively.

But in that positive-ness, I am also real. I realize that my current circumstances suck and that my options are scary and limited. But it is what it is. No amount of being upset about it is going to change it. No amount of negative thought is going to make it positive. As a person of faith, I also take comfort in knowing that no matter how much I worry or stress over anything, God already knows the outcome and He is ready to help get me through whatever the situation may be.

People tell me often, “I don’t know how you do it.” And the answer is so simple…I wasn’t given a choice. And although the statement may be cliche, it’s true when they say…”you find out how strong you are when being strong is your only option.”

When you’re as ill and in as much pain as I am on a daily basis, people expect you to be miserable. They expect you to be sad and depressed. But when you smile at them and make a joke about the pain or the unhelpful medical community, many people seem to be taken aback and they commend you on your perseverance and bravery in the face of these horrifying circumstances. Many people don’t give themselves enough credit though. They say things like, “I could never do that.” Like what I’m doing is something above and beyond. But when you’re not given a choice, when these are just your circumstances that you have no control over, you just do your best to make the best of it. And that’s all you can do.

I didn’t ask to be born with flawed DNA that produced defective collagen. I didn’t ask for my body to get progressively more painful and symptomatic. I didn’t ask for my craniocervical junction to deteriorate to a point where it wouldn’t hold my head up anymore. All of those things are outside of my control. But what I can control is how I choose to respond to it.

And please don’t misunderstand me. I’m not saying that choosing positivity is easy. I’m not saying that being positive will cure anything or make the pain any better. But what I am saying is that if you’re unwilling to make the effort, then your bad attitude is your own responsibility. Choosing to be positive in the face of terrifying medical diagnoses (or whatever your circumstances may be) is something that takes therapy and practice and a whole lot of patience. I didn’t just wake up one day and decide I was going to have a better outlook on life. No…I was very mentally unstable for several years as I worked through childhood abuse and adolescent trauma. I worked through years of repressed emotions and painful memories. I learned about coping skills and how to implement them into my life. And I learned how to ask for help without feeling like a burden to those around me (this is one I’m still working on). At the end of the day, these were all choices I made because I wanted a better life for myself and for the people who love me.

I spent many years in therapy, through my 20s. I had to identify my own toxic traits and work to change them. I had to find the things I didn’t like about myself and, either, change them or learn to live with them. You can’t go through life playing the victim and thinking the word owes you something because you’ve been dealt a crappy hand. We don’t get to choose the cards we get dealt, but it is our own job to play the hell out them.

It’s okay to be sad about what you’re going through. It’s okay to have a physical response to PTSD triggers. It’s okay to mourn and grieve the loss of the life that you had dreamed for yourself. But you have to understand that you can’t stay there. If you want a better quality of life for yourself, then you have to do the work to build it for yourself. Because no one else is going to do the hard work for you.

It’s okay if things are really hard right now. It won’t be like this forever. What are the things you can do right now, that you have control over, to help improve the situation? Focus on that.

Unraveling the Unravelable

Sometimes, admitting that you’re not capable of doing what you know you need to be doing and confessing that you just don’t have the capacity to function the way you would like to be able to…is one of the hardest and most freeing things. I’m spending most of my day today in bed, because I physically cannot tolerate being upright. And the pain is making it almost impossible to even hold my head up.

Some days are tough. Physically and emotionally. But it gets better. And I have to remind myself of that often. It won’t be like this forever. But right now, sitting in this, it feels miserable.

It’s the people who help me sort through the chaos of my jumbled thoughts. The friends, both online and in real life, who are willing to drop whatever’s going on in their own lives to help me deal with the panic of whatever’s going on in mine…those friends are the real MVPs.

This blog post is going to be raw and unedited. Because today, a friend reminded me that the world needs more raw and unedited. And many times I try to make sense of my jumbled thoughts before I put them on paper. Well what would happen if I just put my jumbled thoughts on paper the way they are, without trying to organize them first? So here it is. In all the glorious, confusing, scatter-brained awkwardness that is me…

This morning, I was hurting. I was tired and emotional and just really didn’t want to have to function. At all. But Monday mornings are usually the morning that I meet with a wonderful group of women at the church and we work through life together. And I knew in my heart of hearts that that group is where I needed to be this morning. I knew that even though it would be easier to stay home and isolate myself in bed and feel sorry for myself because of the incredibly high levels of pain I was experiencing and mounting levels in of anxiety tearing at my soul, that forcing myself out of bed and to the group was what would be best for my soul.

So I rolled up to group, nearly 15 minutes late, wearing sweatpants, with un-brushed hair. I walked in and these ladies who I admire and respect greeted me like they were genuinely glad to see me and they asked me the question that is everyone’s least favorite question when you’re barely holding it together…”are you okay?”

And when I say I lost it. I mean…y’all, I LOST it. I couldn’t even elaborate and explain why I wasn’t okay. I just said “no,” and let the tears flow. They comforted me. They provided love and laughter. But most of all, there was no judgement. They reminded me that this life is just hard sometimes and that I’m not alone.

We concluded group and as I was walking out to the truck, another friend (who is also the church pastor) stopped me to say hi. This friend also asked me that dreaded question…how are you doing? ….Well I just finished having an emotional breakdown and haven’t fully pulled myself back together yet, so your timing is GREAT. (Please read that with the thickest amount of sarcasm possible.)

I’m not typically a fake person. If you ask me how I’m doing, I’ll give you the honest answer, even if it will probably make us both uncomfortable. Why? Because I don’t have the energy to pretend that I’m something I’m not. And the world has enough fakeness in it already. I’m not helping anyone by watering myself down. I wear my heart on my sleeve. I always have and I probably always will. It’s a fundamental part of who I am as a person.

So my friend asked me how I was doing and asked me if I needed any help. And the tears started again as I just said…yes, I do need help. We walked back in the church to sit down out of the rain while I proceeded to word vomit for…I don’t even know how long.

My brain often does this weird thing where, I start talking and I have no realization what I’m even really talking about and then I just keep talking and sometimes I catch up with my train of thought and sometimes I don’t. But the destination is always a mystery. But knowing this about myself means that I’m intelligent and logical enough to know that this is probably awkward, but not capable of stopping myself from saying or doing the awkward thing.

My friend sat there and listened. It was like…I was sitting there with spool of tangled yarn. The yarn hasn’t been properly cared for and the wind had twisted it up pretty bad…but as I spewed out all this tangled yarn, my friend helped unravel it. The jumbled thoughts and the scattered fears and confused cries…he helped make sense of the things that I couldn’t make sense of. And when someone helps you understand the very parts of yourself that your couldn’t understand…it’s cathartic and healing.

This is the power of community. THIS is why we aren’t meant to do life on our own. THIS is why God said that man being alone was NOT GOOD. We were made to need people. And that’s honestly one of the biggest things I hate about my humanity. But it’s a big part of me that I’m working on.

But also, because irony is so funny…the message given at church yesterday was about community…so I think I’m supposed to learn a lesson here and remind myself how much I can’t do this on my own. I can’t carry these burdens on my own. I can’t manage everything on my own. And even if I could, I shouldn’t. I wasn’t built for this. I was built for community. I was built for love and hugs and kindness and friendship and openness.

Sometimes, healing doesn’t look the way we thought it would. Sometimes, healing looks like a community of people, coming alongside you to just do life with you, to help you carry the load that you weren’t meant to carry alone.

You’re not doing anyone any favors by not being real. You’re not helping anyone by pretending everything is okay.

Do the next right thing. Do what you can, with what you have right now. The rest will work itself out.

Unfortunately, so many tears and so many intense emotions have a direct effect on my pain levels and ability to function. The crying messes with my cranial pressure and now, for the rest of the day I’ll probably be unable to be upright because the pressure is so unbearable. My body feels run down, nerves are firing all over my body for no reason other than complete and total overstimulation. But honestly, it was worth it. I didn’t even realize how close I was to losing it until someone asked me if I was okay. I didn’t realize how not okay I was. So today, I’ll be laying in bed and letting my body and my heart recover from the emotional hangover. And you know what, I don’t even feel guilty about it.

Peace is the calm
That forces chaos to silence
It’s quiet and loud
And brings renewed hopeful balance
It’s a power so strong
None of us can explain
But when it arrives
It lifts the burden of pain
It gently envelops
Every part of my soul
And for the first time in ages
My brokenness feels whole

I’ve prayed for this peace
Time and time again
But it turns out all I needed
Was to just look at Him
This peace was a gift
That He’d been holding for me
But somewhere my gaze diverted
And I couldn’t see
He said to me, “child,
Won’t you please ask for help
As much as you try
You can’t do this yourself
And I just stared in wonder
Not really sure what that meant
I was so pained and so tired
My body was spent
So I gave it all up
And said “Your will be done”
Imagine my surprise
When I saw the Son
I saw Him in the faces
Of the people who cared
The ones who, without hesitation
Were simply, just there
I feel Him in the arms
Of the friends who just hugged
Who placed their own burdens down
To wrap me in love

Peace is the calm
That heals broken pieces
Paid for by God’s love
And by the death of Jesus

To the Doctor who Wouldn’t Listen…

To the doctor who wouldn’t listen…

I’d like to take a moment to thank you for all you’ve done for me and for my healthcare. I want to thank you for discharging me from your care and giving me the opportunity to seek out a more skilled physician who actually specializes in my conditions.

Upon seeing an Ehlers-Danlos specialized neurosurgeon and having an upright MRI done, I was diagnosed with craniocervical instability and significant cervical myelopathy. The upright MRI showed multiple herniated discs, brainstem compression, and decreased CSF flow. But that supine MRI you performed was just fine, right? I’d be all better if I would just lose some weight, right?

When I first became your patient in the fall of 2018, I thanked you for listening to me and you told me “if I didn’t listen to my patients, I might as well be flipping burgers.” Well, sir, looks like it’s time for you to start flipping burgers. I came to you desperate for help and you made a commitment to my husband and myself that you would help find the root cause of my symptoms, but when I asked too many questions or suggested that you were missing something, you disregarded and dismissed all of my concerns and gave the recommendation of weight loss surgery. You flat out refused to treat me anymore because I asked you TWICE for an upright MRI. (Which if you had even once consulted an EDS expert, they would tell you that upright MRIs are extraordinarily useful and should be considered the standard for EDS patients.)

When you initially discharged me from your care, I was devastated. But anger spurs productivity in the hands of a determined woman. And I didn’t go through years of therapy, in my 20s, to learn my value as a human being just to let an arrogant man like you steal that from me. So instead of letting you convince me that I was just fat and depressed, I sought out someone else who was actually educated about my conditions. It took me years to learn how to listen to my body. And in just a few months as your patient, you somehow tried to convince me that everything I claimed to be experiencing was wrong.

You have a very poor understanding of the Ehlers-Danlos syndromes, chiari malformation, and craniocervical instability. If your goal, as a doctor, truly is to provide the best possible care to your patients, you are failing atrociously. The oath states “first, do no harm,” correct? So what do you call ignoring a patient’s legitimate and possibly life threatening health concerns? Most would call that…doing harm. Do yourself a favor look up “complex chiari.” And for the sake of your next EDS patient, do some research on the neurological manifestations of EDS. Because while you may think you know it all, the last year of my medical history would beg to differ.

The American healthcare system is extraordinarily broken. And it’s primarily that way because of doctors like yourself. Doctors who think patients should just do or follow everything that you say, just because you say it. Doctors who gaslight their patients and try to convince them their problems aren’t real. At the end of the day, you are a human being, just like the rest of us and prone to mistakes. And whether you want to believe it or not, you don’t know everything. Your two hour lecture on my condition does not compare to my 30+ years of living with it. Yes, you are the one who went to medical school. So, yes, you do have more medical knowledge than the majority of people. But your medical degree does not make you all-knowing. The best doctors are the ones who admit that they don’t know it all, but are willing to learn. You should work on becoming a doctor like that. When I tried to offer you peer reviewed research articles on EDS and CCI and the importance of upright imaging in EDS patients, you turned up your nose and refused to even look at them. Because, why? Did you think you already knew it? Or you thought I was just some fat, dumb housewife who wouldn’t stand up for herself?

Your patients are people. They are living, breathing humans with lives and families. And when you dismiss and ignore your patients drastic health concerns, you have direct negative impacts on their lives.

At this point, I have lost almost all function of my left leg and can no longer walk unassisted. I have frequent episodes on urinary incontinence. I can no longer ride bicycles with my children. I can’t follow my own train of thought of the time and get confused while having simple conversations with people. It’s like my brain is trying to do so many things to keep my body functioning, that when I need it to do anything else, it just says no. All of this deterioration may have been able to be slowed or even prevented altogether if someone had done the proper imaging and given the proper diagnosis from the get-go.

I’ll give you the benefit of the doubt and say that maybe your intention wasn’t to dismiss or degrade me, so now I’m bringing it to your attention and it’s on you to do better for your next patient.

So thank you. Thank you for giving me the opportunity to show my children how to be tenacious in spite of the hand that life has dealt you. And thank you for giving me a reason to seek out an EDS specialist. Because that was the best thing I could’ve ever done for my healthcare. I sincerely hope that 2020 is a year of growth and research for you.

Sincerely,

I Deserve Better

Live With Resolve

Have you ever gone somewhere, like really anywhere, and someone says something, like really anything, that really just hits you and makes you think…wow, I needed to hear those exact words? Whether or not the person was even speaking to you, the words were exactly what your soul needed to hear.

That’s what happened at church this past Sunday. The sermon was based off of a passage from Daniel. But this blog post is less about the specifics of what happened to Daniel and more about what I learned and what I think we all need to learn. (Look up Daniel, chapter 1 if you’d like to read more about the specific passage.)

Live with resolve. That was the message. Don’t just go with the flow because that’s what others are doing and it’s easy. Okay, that’s simple enough, we’ve all heard our parents tell us something like that before, right? But living with resolve goes so much deeper than that. Especially in the context of being chronically ill.

When I started getting sick, it’s like I was ripped from my old life. My healthy life. My life where I was capable of doing just about anything I wanted to do. I was ripped from the things I had control over and thrown into a life where I couldn’t control anything. And, to say the very least, it was absolutely terrifying. I was taken from the life I knew, the life I was familiar with, the life I was comfortable with, and given over to a life where I couldn’t figure out which way was up and which was down. It felt, very much, like I was falling down the rabbit hole in Alice in Wonderland. Nothing made sense. My life, as I had known it, was gone.

At that time in my life, I had no ability to cope with what was happening to me. My brain was so overwhelmed and consumed with the physical pain and the anger and sadness that I was completely incapable of moving forward in life. I was blinded by my own circumstances and couldn’t see a life beyond them.

But here’s the thing. Once I stopped pretending that I had it all together and that I was okay, once I asked for help, I learned and developed proper coping skills and I was eventually able to see that those circumstances that once blinded me, were actually developing me into the person I would become today.

In the story of Daniel, he resolved not to defile his body with certain foods, to be true to himself and what he knew to be right because of his faith. (But whether you’re a person of faith or not, this message is still so applicable.)

Live with resolve. The dictionary definition of resolve is “firm determination to do something.”

Live with a firm determination to do something. Whatever that something is for you. Do it with a firm determination.

Live with resolve means doing the hard thing, even though it’s hard and everyone else is doing the easy thing.

Live with resolve in regards to not settling for a dismissive doctor. Live with resolve in regards to asking for help when you need it. Live with resolve in regards to being honest with yourself and others about how you’re doing. Live with resolve in regards to kindness towards others.

Living with resolve allows us to be the most true versions of ourselves. And being the most true version of yourself is the most beautiful thing you can be.

Just be you. Even if you don’t know who that is right now because your life has been flipped upside down and you’re lost in the wilderness. Even when you feel completely and utterly alone and you’re blinded by your circumstances. Just be you. Take the steps. One foot in front of the other. Just keep moving. Ask for help. Your circumstances may feel blinding now, but let someone else help guide you through.

Everything you do, do it with a fierce determination.