Ten Years in the Making

Ten years ago, I stood up at the front of a church, in a beautiful dress, across from a handsome man in his military dress uniform and said, “I do.” I was a 21 year old kid who knew nothing about finances, marriage, or reality. But still, his steady hand convinced me that we would, somehow, be okay as we walked through this crazy life…together.

I grew up a child of divorce (I say this as just a simple statement of fact, not to insult or disrespect my mom), so I did not know what it looked like to be a wife. I never had a solid example of what married people did or how they interacted with one another. My husband’s parents are still married and have been (I think) for about 35 years. He’s seen married people fight and reconcile. He’s seen his dad care for his mom through health crises with love and grace. He’s watched their marriage unfold over the years and he learned how to be a husband.

We didn’t have a long engagement and, in fact, I was pregnant with our oldest daughter at our wedding. I was a 21 year old college student and Coast Guard reservist and he was a 22 year Private in the Army. Statistically speaking, we should’ve been divorced within the first two years. But somehow, we survived those years.

The first five years of our marriage brought a couple of kids, a handful of deployments, and a few dozen training missions ranging from a week to a couple months away at a time. It was a stressful time for both of us, but we “kept on keeping on.”

But during that time, I was “healthy”-ish. I hadn’t yet been diagnosed with Ehlers-Danlos. I had random injuries and miscellaneous illnesses and a couple hospitalizations; but overall, I considered myself to be in good health.

I received the EDS diagnosis is 2014. All the random injuries, miscellaneous illnesses, and constantly increasing pain I’d had throughout my entire life finally made sense.

I went home and told my husband. I pulled up the educational material on EDS. And as he always has been (maybe a result of being in the Army or maybe just because of his personality), he had very little emotional reaction (which, if I’m totally honest, is one of the biggest things that has always driven me crazy about him). While I was a basket case of emotion and uncertainty, he was calm and unmoved. He wrapped me in his arms, told me to take a deep breath, and reminded me that we were in this together.

The next few years were a whirlwind of doctor’s appointments, injuries, surgeries, and hospitalizations. It was as if one issue sparked another, which caused something else, and so on and so forth… It was never ending. Some of those medical incidents were emergent and/or life-threatening, while others were more routine. But the one thing that has never changed, through everything, was the constant support of the man who promised to stand by side through sickness and health.

Now, here we are in 2019. In the last two months I have been admitted to the Neuro ICU twice. I have a much longer list of medical issues now and nearly all of them can be traced back to EDS as the initiating catalyst. In the last two months, there have been several times where the pain was so intense and so severe that I wondered if I was actually going to die this time. Would my husband become a widower and be left alone to raise our children? Would my children’s last memories be of me in a hospital bed?

I’ve cried a lot of tears over the last couple of months, but one thing has not changed…the stoic man next to me, holding my hand. Ten years ago, his lack of emotion drove me crazy. Why couldn’t he just give me some indication of how he felt? But today, I’ve come to realize that, that lack of emotion is what balances out my excess of emotion. As I shake with an overwhelming amount of emotions that I don’t know how to deal with in my malfunctioning brain, his steady arms around me are a reminder that we will get through this one too.

My husband’s love language is “acts of service.” He’s a doer. He does laundry and dishes. He keeps our vehicles running with as needed maintenance and preventative maintenance. He bathes the dogs and vacuums the floors.

Ten years ago, when we said “I do”, I loved this man with all my heart. I loved this man as much as I was capable of loving him at that time. But in retrospect, I loved him for shallow reasons.

Today, I love him differently. I love him more deeply. I love him more purposefully. I love him for his steadiness. I love him for his persistence. I love him for the way he loves so fiercely and without condition. I love him for the way he is protective of me (both physically and emotionally). I love him for the way he loves our children. But not only do I love him for all these reasons, I respect him. I respect him for all of this and so much more.

He’s not a perfect man, but he’s perfectly imperfect for me.

Ten years ago we were 21 and 22 year old kids who thought we knew everything. Turns out, we knew very little about the real world. And ten years from now, we’ll probably look back and realize that we still don’t know as much about the real world now as we’ll know by then.

This life may be crazy and overwhelming at times, but I couldn’t be more thankful for the man that God gave me to do life with.

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The Chronic Pain Cycle

Chronic pain is an intensely difficult for people to understand if they’ve never been through it first hand. And sometimes, even when you’re the one living with it every day, it’s still hard to understand.

The last few months, I’ve had pain that has just gotten worse and worse with very little relief. When you’re in excruciating pain every day, your brain chemistry changes and your personality changes. There are good days and there are bad days. Some days, I can go to the gym and lift heavy weights and ride my bike. Other days, I can barely get out of bed because the pain is so bad.

But with chronic pain comes a never-ending cycle of coping. This cycle is pretty similar to the stages of grief, but it’s not something you just go through once, it’s a continuous method of coping.

After diagnosis, there’s the initial grief…as anyone would grieve after receiving any life altering news. How did this happen? Did I do something to cause this? Will life be like this forever? Will the pain ever go away? How much longer will I be able to keep working? How will this effect my ability to be a mom as I age?

Getting a diagnosis hit me like a ton of bricks. My whole life, I had always felt like something was wrong, but when I got the diagnosis of Ehlers-Danlos Syndrome, it was like I had punched in stomach. I wasn’t ready for it. I wasn’t prepared to hear the words “daily pain” and “no cure”. After the diagnosis, there’s an initial grieving process that we must go though. I had to grieve the loss of the life that I had dreamed of for myself. I had to accept that this would be my life, for the rest of my life.

But there’s a whole other coping process going on as well. When the pain never ends, neither does the cycle of grieving. Once I grieved through the initial shock of the diagnosis, I picked myself and carried on with my life. But the thing is, there’s only so long that a person can stay strong for.

When it comes to chronic pain, sometimes it just breaks you. You can handle the pain and the other symptoms over and over, every day. You push through and enjoy your life. Until you just can’t take it anymore. You break down. You have to cry and let it out. The pain just builds up so much and you break. Your spirit gives in and it can’t endure anymore suffering and you panic at the thought of, “will I feel like this forever?”

One of the most terrifying feelings I’ve ever experienced is the fear of not knowing if the intensity of pain I was feeling at that exact moment would ever cease.

The fear then leads way to anger. Anger that I have to deal with this. Anger that there’s nothing I can do to make it go away. Anger that doctor’s don’t listen. Anger that there are medications and therapies out there that would help me, but I’m not allowed access to them because of the way our laws are set up. Anger that the people who make the laws have never actually had to deal with severe chronic pain.

Now, when I reach this point I’m the cycle, I’ve learned that I have to let myself feel the emotions. I have to remind myself that this is NOT permanent and I have to ride it out. If let myself forget, even for a moment, that “this too shall pass” (it may pass like a kidney stone, but it’ll pass), I get caught in a spiral of inconsolable grief and the desperation will consume me. And once I go down that rabbit hole, it’s much harder to claw my way back out.

There have been times that I’ve tried to just stuff my emotional response to the pain. If I pretend it’s not there, maybe it will go away. But let me explain why that doesn’t work…when I ignore it, it builds up inside of me. My anxiety spikes and (in the moment) it’s hard for me to figure out why. If I try to push through when my body is, very obviously, telling me to rest, I will end up deeper into that spiral of inconsolable grief.

Once you find the right doctor and you’re able to find the right treatments and therapies, you’re able to process much quicker to the ‘hope’ stage. This part of the cycle is tricky though because, sometimes, it could take weeks or months to find something that helps relieve the pain. Sometimes, you encounter doctors who are just plain unwilling to help.

The best doctors are the ones who take the time to listen and respect what you have to say. They’re the ones who understand that they don’t know what it’s like to live inside the torture chamber that is your body. Those doctors are the ones who give you hope.

And once you reach the hopeful part of the cycle, you don’t know how long it will last. Because, remember, you can only be strong and “just deal with it” for so long until the cycle starts all over again.

Chronic illnesses are unpredictable. You never know when a flare is going to strike or how hard it is going to hit you. But you have to be prepared, at all times, for your body to break out a sudden and powerful assault against itself. And sometimes that fear can be more crippling than anything. There’s a fine line (a VERY fine line) between listening to your body and resting and taking it easy versus proclaiming that you will not allow this illness to control your life.

If you’ve been fortunate enough to never feel the agony and despair that is chronic pain, count yourself incredibly lucky. But take a moment to imagine…imagine the pain you felt last time you were in a car accident or had the flu, now imagine feeling that pain all day, every day, for the rest of your life. That doesn’t sound very encouraging, does it?

You may be in more pain than you ever thought humanly possible, but you’re also a lot stronger than you’ll ever realize.

Happy New Year, fellow spoonies. May this new year bring you rest and comfort and relief.

The Hope of Being Heard

Since we moved to Georgia in February of 2017, I’ve been getting bounced around from doctor to doctor. I get directed to one doctor, who sends me to another, who sends me to another. All the while, no one actually helps me and my symptoms get worse…

My cognitive function has declined, leaving me with little to no reading comprehension skills, a severely damaged short-term memory, and difficulty saying the words that my brain is thinking…among many other things. One day last week, I forgot where I was going, while I was driving. Because of all of this, these last 6-8 months have been some of the scariest months of my life. I’ve gone to doctors, expecting them to help me. Hoping, praying, and begging that someone…anyone…would be willing and able to figure out what’s wrong.

After my most recent visit with the last neurosurgeon, I felt so defeated. The neurosurgeon’s exact words to me were, “I don’t want to see you anymore. You’re shunt is fine, you’re just having headaches. Follow up with pain management.” Umm…what!?!? What is the point of of trying to get help from doctors only to be turned away and denied access to care? But I, reluctantly, agreed to try once more with with a neurologist.

So I met with that neurologist yesterday.

He. Was. Amazing.

I have to admit, because of all the medical experiences I’ve had thus far, I went in there on the defensive. I went in there with the mindset that he wasn’t going to help me. And boy, did he prove me wrong. Once I started talking, the emotions and anxiety all spilled out of me. The words kept spilling out as I was sobbing and my voice naturally just started getting louder. Finally, he stopped me and asked, “why are you yelling?” And he was right, I was yelling…and I really have no clue why. It wasn’t intentional; it was the result of months of frustration from being ignored and dismissed just spewing out. AKA, word vomit.

He looked over my previous MRI report and explained it to me, because the previous neurosurgeon didn’t. Those “headaches” I’m having are the result of a 5mm Chiari Malformation and a bulging disc at C2. He asked about my history and specific problems I might be having. He asked me about my sleeping patterns and took a look at my sleep log (tracked through an app on my Apple Watch) and told me that a some of my cognitive decline could, very well, be the result of long term sleep deprivation. He acknowledged that I have a severe amount of anxiety from not being heard by the doctors I’ve trusted to help me (instead of telling me that “if I treated my anxiety, my health problems would go away”).

When I talked, he listened.

I don’t NEED anyone’s validation about what I’m going through. Because, whether or not anyone believes me or helps me, what I’m going through doesn’t change. But having that validation doesn’t hurt either.

(Also, just a side note…the next person who tries to call my brain falling out of my skull, “just a headache,” might get throat punched.)

But you know what this doctor gave me…he gave me hope. He put together a plan of action. He looked me in the eye and said, “we’ll get you healthy again.” Now, I’m not really sure what “healthy” for me will look like. Medically/health wise, no doctor that I have seen has given even the slightest bit of hope that things can or will get better. I don’t even know how to begin to explain what it feels like to finally be HEARD after months of being ignored.

The pain isn’t any less. The cognitive function isn’t any better. And there’s no magic cure to make this all go away. But there is a plan. There are options.

THERE. IS. HOPE.

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