I hope

Sometimes in life, things get hard and you get tired. Fighting for every step you take is exhausting. You can only “fake it” for so long until you break and you crash.

Not having a doctor to follow you when you’re going through a major health setback is scary. It makes you question what you question if you’ll ever get better. It can make you lose hope and it’s scary.

Today I got some great news about my insurance referral and I got approved for a doctor that specializes in Ehlers-Danlos. It feels good to have something to look forward to again. In the midst of the daily pain and agony, I now actually have a plan for continuing to search for a better quality of life.

I hope
I’m scared.
I wake up in the morning
And my body aches
My bones aren’t in position
They migrate at night.
So when I wake up
I have to put them
All back into place.
And it hurts.

I’m tired.
I go to sleep at night
But I don’t rest
This is the kind of tired
That sleep will never help
My brain is foggy
It makes my thoughts
Just so hard to catch.
And it hurts.

I’m in pain.
Every day
From morning to night
My muscles ache
As if attacked with a bat
It burns through my body
Like acid coursing
Through my skin
And it hurts.

I’m a human.
Sometime I have to remind
The insurance and doctors
And the general public
That I’m a person
I have a heart
I have a brain
I can feel
And it hurts.

I hope.
That someone will help
Someone can tell me
Why I cry in pain every day
And give me back the life
That sickness takes
I won’t give up
Because I hope
And it heals.

It’s okay to fall down and it’s okay to cry. But you can’t stay there. You eventually have to get back up and dust yourself off and just keep moving forward.

Because that’s the only option.


When “do no harm” becomes “not my problem”

When doctors become doctors, they swear an oath to help those who are suffering. They vow to “do no harm.” But what do you do when the person you’re supposed to be able to trust to help you, decides you’re not worth their time anymore?

Last month, my neurologist decided that he wouldn’t treat me anymore. He wasn’t denying that I still have issues that are unresolved, but he told me I needed to see someone else for them because I asked too many questions and hurt his ego.

“I am Strong”
I came to him, desperate
Begging for him to help
He gave me commitment
And promised he’d get me well
He started out strong
Ordered labs and tests
He told me “don’t worry,
We’ll get to the bottom of this.”
But as time went on
I didn’t fit in his box
So my symptoms and pain
Just simply got lost
I asked him questions
Trying to make sense of it all
But his ego was fragile
When I questioned his call

I can’t hold my head up
My spinal cord is compressed
I can’t chew my food
All of my joints are stressed
I can’t ride bikes with my babies
Because I can’t balance anymore
The weakness in my legs
Often lands me on the floor
Words jumble together
When I’m trying to read
And my brain can’t retain
The information I need

So even though his oath
Vowed he’d first, do no harm
He walked away from the suffering
And he lost his charm
He showed me the door
And said “find someone else.”
Leaving my with no answers
And still crying for help

But my story doesn’t end here
I’ll keep pushing for hope
Because fighting for ME
Is the only way I can cope
I’ll fight for my health
Until the answers are known
I won’t let negative doctors
Make me feel alone
I am brave, I am strong
And likewise, so are you
Don’t give up, don’t give in
Fight your way through

I got accepted by the Mayo Clinic and scheduled have an appointment to be seen at the Mayo Clinic in Jacksonville for June. But am having trouble getting the referral approved because of the former neurologist. I haven’t cancelled the appointment yet, but I may have to.

I’m sharing all of this because I know I’m not the only one who has had this happen to them. I know I’m not the only one who has been dismissed by an insensitive doctor who was unwilling to listen. I know I’m not the only one who has been dismissed as a hysterical woman.

These doctors need to be held accountable. These doctors a ruining people’s lives with little to no consequences. These doctors are forcing people to suffer in silence for months, years, or decades.

So share your stories and speak up. The best person to advocate for you is YOU.

What Do You Do When Your Doctor Gives Up

When most people get sick, they call their doctor and schedule an appointment, trusting that their doctor will be able to diagnose and treat whatever the ailment is.

That is not the case for me. And for thousands of others like me.

When I go to the doctor, there’s no guarantee that they’ll be able to help me. There’s no guarantee that they’ll be able to tell me what’s wrong or how to treat it.

I’ve been in pain my entire life. As a kid, I was told that the pain was just growing pains. I think I was in high school before I realized it wasn’t normal for people to be in pain all the time. But if it was normal for me and no one ever told me otherwise, how could I have known that it wasn’t normal for all people.

I wasn’t diagnosed with Ehlers-Danlos Syndrome until I was 25. Before that, I never even knew that EDS was a thing. That means that for 25 years, I went to doctors and explained my pain and my symptoms and no one could pinpoint the cause. I’ve been put on so many different medications that I’ve lost count. I’ve been a medical guinea pig.

But now, my doctors don’t have answers. Nor are they willing to take the time or energy to search for them. My neurologist, who has been the one doctor on my team who I’ve really liked, told me that there’s nothing more they can do except monitor and manage my symptoms. Symptoms that include declining memory and cognitive function, nausea, dizziness, and a ridiculous amount of pain.

I used to be active. I was a runner and a personal trainer. I was able to run and play with my kids. We could ride bikes. But now my vertigo/balance have gotten too bad and I’m physically unable to ride bikes with my kids anymore.

My brain is incredibly scattered these days. Sometimes I forget what I’m saying while I’m in the middle of talking.

I’ve started looking for medical care elsewhere. But the problem with looking for medical care elsewhere is that it’s not covered by insurance. I found a few different specialists who are willing to take on my case, but it costs money that we simply don’t have. I haven’t been able to work since October and am having a hard time getting approved for disability. I even started a GoFundMe campaign to try and raise the money.

Honestly, I’m getting desperate. I just want answers. I’m only 31 years old. God willing, I’m not even halfway through my life and my doctors have given up trying to give me a better quality of life.

But one thing I’m determined to do, no matter what, is not give up hope. There has to be hope for a better quality of life out there. I refuse to believe that this is it. I refuse to believe that I’ll never be able to ride bikes with my kids again.

My doctors may have given up on trying to help me. But I have been through too much and come too far to even consider giving up now. Just because the professionals have given up on trying to help me have a better quality of life doesn’t mean I have. I can’t accept that THIS is all there is left for me. I refuse to accept that.

There’s hope out there. I just need to find the right doctor who’s willing to take the time to look at the big picture.

This isn’t the end for me.

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.

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 Cranial Assault of 2018

Sometimes, life throws you curve balls that completely change your plans. And sometimes those curve balls result in emergency brain surgery and nine days in the hospital.

I have a VP shunt to treat idiopathic intracranial hypertension.

On Thursday, November 29th, my VP shunt failed. My husband and I were at the movie theater, watching Crimes Against Grindelwald when I realized the shunt reservoir was sunken in where it was supposed to be puffed out. I had been having some worsening neurological symptoms for the previous few days and had even spoken to my doctor’s office the day before. But we had come to the conclusion that it was all just a result of being sick with a cold. Now, if you know me and my obsession for all things Harry Potter, you know we finished the movie. After the movie, I called my doctor’s office to advise me what I should do. I wasn’t able to reach anyone, but did leave a message. It was late in the afternoon though, so I wasn’t sure that I’d hear back that same day and I knew this was an issue that needed to be addressed. I knew the shunt being sunken in was a bad thing, but I wasn’t sure how bad. I decided to call the nurse advice line through my insurance, who advised me to go to the ER. I REALLY didn’t want to go to the ER, so I called the my doctor’s after hours line and had them page him. My doctor called me back and I explained to him what was going on. I told him that I was mostly calling him to have him tell me I didn’t need to go to the ER, but I was starting to feel like he wasn’t going in that direction. He told me, “stop f***ing around and get your ass to the ER now.” So, reluctantly, I made arrangements for the kids and had my husband get me to the ER.

We were supposed to be leaving on vacation to Orlando the following day, so I was in a bit of a panic thinking that everything we had planned and paid for would go out the window.

When we got to the ER, I was whisked back to a room immediately. When the doctor came in, he was a nice enough person, but I’m pretty sure he’d never seen a VP shunt before. I explained what my symptoms had been and the issue with the shunt reservoir. He briefly felt my head and asked, “so this isn’t what it’s supposed to feel like?” Umm…no, it’s not.

They did a CT scan and X-rays. Eventually did blood work as well. The doctor said that he was consulting with the on call neurosurgeon, but that he couldn’t get there to see me until the morning, so I was going to be admitted. I was in pain and nauseous and scared. My husband sat by my side, holding my hand until they got me admitted, but then he had to get home to relieve our babysitter and get the kids up and ready for school.

Later that morning, I got to see the neurosurgeon. He assessed my shunt and told me that it needed to be fixed ASAP. But it was a Friday and he couldn’t do the surgery that day, so the surgery was scheduled for Monday…which meant that I was looking forward to a painful, lonely weekend spent in the hospital. To help ease some of the pain and pressure through the weekend, the neurosurgeon performed a lumbar puncture. He removed about 30ml of CSF and hoped that, that would hold me over until Monday. To be honest, I’m not sure that the added pain and discomfort of the lumbar puncture were worth the little relief it gave me.

At this same time, we had had a vacation planned for months. We were supposed to be leaving that day. We had my dream vacation planned and it wasn’t just the immediate family. We were going on vacation with my mom and sister and her family as well. We were going to Universal Studios Orlando. Most importantly, I was finally going to get to go to the Wizarding World. My husband and I agreed that he would take the kids and go to Orlando as we had planned while I stayed in the hospital and had surgery and hopefully I’d be home before the family got back from vacation. As much as I hated the thought of being alone and scared in the hospital while my family was enjoying my ideal vacation, I knew it was important for the kids to go and make once in a lifetime memories with their aunt, uncle, cousin, and grandma.

So I stayed at the hospital while my family was off enjoying my dream vacation. I had a few great friends stop by and visit me. I had great nurses. I reminded myself, “this too shall pass.” It may pass like a kidney stone, but it’ll pass.

When we finally made it to Monday, the neurosurgeon told me I was his second surgery of the morning. And because I was having surgery, I wasn’t allowed to eat anything. The hours passed, hungrily, through the day. It wasn’t until after lunch-time that I was told that my surgery had been pushed back to 5:30pm. Monday was one of the worst days. It was hard to spend the majority of that day hungry, anxious, in pain, and alone. Thankfully, I had a friend who was able to come visit in the afternoon.

I wasn’t actually taken back for pre-op until around 6:30pm and then wasn’t taken to the or until around 8:00pm. I think it was around 12:30 when I woke back up. I woke up ok excruciating pain. I don’t really even know how to describe it. It was like I could feel each individual stitch. Once I was able to form actual words, I was able to tell them that I couldn’t hear out of my right ear (the incision was on the right side of my head). I don’t remember what all happened. Everyone was moving and everything was just buzzing around me. My ear felt muffled; it sounded like when you’re wearing ear plugs. Ultimately, they decided that the hearing loss was caused by blood and betadine settling and building up in the ear canal during surgery. It took about 5 days before my hearing was almost completely back. It’s still muffled from time to time, but it comes and goes.

My friend who had been visiting with me that afternoon, had stayed at the hospital while I was in surgery. I don’t even remember what time it was, when they finally let her back to my room in the Neuro ICU. But I do remember that she sat by my bedside all night. The pain was pretty intense all through the night/morning. I would fall asleep for a few hours at a time and each time I woke up, I would be in tears from the pain. Clearly, she couldn’t replace my husband, but it was nice to not have to be alone during this time. I’m incredibly thankful for the three days she spent cooped up in the hospital with me.

Sometime after surgery, I realized that the entire right half of my head had been shaved. In the grand scheme of life, I know a functioning brain is more important than hair, but my heart sunk when I realized how much of my hair had been shaved. My first brain surgery, the doctor shaved such a small section, I was able to cover it just by the way I parted my hair. This time, I would end up with a completely bald head. I just wasn’t mentally prepared for it.

I felt a lot of emotions those first couple of days. Between the pain meds, the pain, and the sleep deprivation, there were a lot of tears shed. I had a couple of great nurses who really helped make it all somewhat bearable. Tuesday night, I used a bag of wipes to clean the betadine and blood out of my hair and braided back my remaining hair. I’ve never had much talent for braiding hair, so I was pretty impressed with myself. LOL.

On Tuesday, the neurologist who originally told me to go to the ER, stopped in for a visit. He wasn’t actually involved in my care there, so it was nice that he visited, even though he didn’t have to.

Originally, it was expected that I’d only spend 24-48 hours in the hospital after surgery. But each day, the pain wasn’t improving. The worst of the pain was (and still is) in the base of my skull and neck. My head feels like bobble head, it hurts to just try and hold my own head up. I had this feeling before surgery, but I’m pretty sure the “bobble head” feeling actually got worse after surgery.

My family came back from their Orlando vacation that Friday afternoon. And they brought my mom home with them. There really hadn’t been much improvement all week, so I was still in the hospital. And because I was in the ICU still, my kids weren’t allowed to visit. My husband came to visit on Friday. We had hoped that I’d be going home on Saturday. Saturday rolled around and the doctors didn’t show up. My mom and husband came up to visit around 4:30pm on Saturday evening and then around 5:00pm the neurosurgeon finally came through. He asked me what I wanted and I told him that I’d rather be miserable in my own bed.

So we got packed up and headed home.

I wasn’t able to sleep in my bed that night because I couldn’t lay flat. But my recliner was still more comfortable than the hospital.

Once I got home, I knew we’d have to go ahead and shave the rest of my head. The remaining half of my hair was still in the brain, so I cut the braid off before I had my husband start shaving it.

I didn’t think I’d cry as much, about shaving my head, as I did. But as I cried, while my husband shaved my head, he decided to shave his also.

I didn’t think it was possible to love him even more. I was wrong.

Going through this whole ordeal without him by my side, was probably the hardest part of all of it. The pain and nausea and anxiety were all tough. But being in the hospital and going through such urgent surgery without him there, was the worst.

I’ve made it through and I’m on the other side. Now it’s time to try and get back to life as “normal”…whatever that looks like.

Sensory Deprivation: A Chronic Illness Perspective

A sensory deprivation tank is a lightless, soundproof tank filled with salt water at skin temperature, in which individuals float. I’ve heard a lot about these tanks in the last few years and I’ve wanted to try one.

As a person who deals with extreme sensory overload on a daily basis, a sensory deprivation tank has always sounded so relaxing. I often use sensory deprivation in the form of noise-cancelling headphones and a dark room to help calm my sensory related anxiety. So for my birthday, my mom bought me a float session at Remedy Float in Savannah, Georgia.

It’s been a little over two weeks now, since my float. My biggest question immediately after the float was, how long will this relief last. Now that I know the answer to that question, I figured it was time for a full, detailed review of my experience during and after.

I had a little anxiety, leading up to the session. Even though I knew that I wanted and needed the sensory deprivation, it was an unknown that I wasn’t sure how to mentally prepare for.

I don’t really know what exactly I was expecting, but what I saw when I got there, wasn’t it. I wasn’t planning on going to space today. But when I was shown to my “cabin”, I immediately wondered if I needed to run back home to get my spacesuit. LOL.

The employee showed me how it works, handed me some ear plugs, and left me to it.

It’s a weird feeling, when it’s so pitch black that you cannot tell if your eyes are opened or closed. At one point, I literally had to reach up and touch my eyes to find out whether or not they were open. FYI, they were open.

My session was 90 minutes long. You can get in and out of the tank as needed or even prop the door open if you can’t handle the complete darkness. I was able to spend the whole 90 minutes in the tank without needing to get out or prop the door open.

I got undressed, put in the ear plugs, and rinsed off in my private shower (just as you would rinse off before getting in a pool). I opened the door, stepped in, and lowered myself into the water. I knew the water would be buoyant, but I was still surprised by how quickly my body bounced up to the surface as I laid my body back.

I don’t know how long it took my mind to float off into a trance, but because the water is the warmed to skin temperature, once I had laid still for a few minutes, I couldn’t even feel the water around me anymore. I felt like someone had cast a “Wingardium Leviosa” spell on me (high five if you understand that Harry Potter reference, lol). During the float, my legs would twitch at random moments, which would pull me from my trance-like state. I don’t remember, now, the specific thoughts that I had while I was in my trance, but I know I had some strange ones. My mind wandered as if I was dreaming, but I was still awake.

While I was in the tank, I felt a calm that I don’t think I’ve ever experienced. When I took away the lights and sounds that constantly cloud my mind and trigger my anxiety, my brain was able to relax. My brain was able to let go. I didn’t have to try to make sense of my surroundings because there was nothing to try to make sense of. For the first time in…ever, my mind could just “be”.

One of the strange things about being in the tank is, without any outside stimulus, the body isn’t able to keep track of how much time has passed…so I couldn’t tell how long I had been in the tank.

Because I have been in so much pain for so long, my body has built up internal defense mechanisms that have allowed me to cope with the pain. The downfall of that, though, is that my brain and my body don’t connect and communicate very well. Almost like, my brain is protecting me from my own pain levels because if my brain knew how much pain I was actually it, it would stop allowing my body to function. I say all of that to explain, while I was in the tank, my brain and body were able to reconnect. I was able to tune in to the areas of my body that had been ignored without the same pressure and pain I would feel outside the tank.

When my 90 minutes in the tank ended, the speakers inside the tank started playing tribal drum music to tell me that my time was up. The music started softly and I couldn’t hear it, at first, because of the ear plugs I had in. However, I did feel the vibration of the sound waves. As my body started to connect with the stimulus of the music, I reached above my head to crack the door open, to allow my eyes to slowly re-adapt to the light.

After a few minutes, I pulled myself up and out of the tank. As I stepped out, onto the floor, I immediately noticed that my joints felt much different. There was still pain but it was much lower than it was before I got in the tank. And the pressure that I had constantly felt in my joints for, pretty much, my entire life was greatly diminished as well.

I took a shower and washed the salt water from my body. Slowly but surely, I allowed my brain and body to reconnect with my surroundings. I began taking a “pain inventory” as I assessed the level or relief I felt.

And that’s when I noticed that, for the first time in MONTHS, the pain level in my head and neck, from the chiari, was lower than it had been in a long time. As I got dressed, I cried uncontrollable tears of relief because the pain had been so severe, for so long that I was awestruck to feel even the slightest relief that no other medication or therapy had been able to give me.

The next few days, after the float, the same sensory inputs that would usually send me into a sensory overload were easier for my brain to process.

The pain and pressure relief that I felt throughout the joints in my entire body lasted about a week. I’m not sure how frequently sensory deprivation floats are recommended, but if there was any way that I could afford to float once a week, I think my quality of life would increase dramatically.

If you ever have an opportunity to schedule a session in a sensory deprivation tank, I HIGHLY RECOMMEND IT! Even if you’re only able to do it once, do it! It’s still worth it. The relief, even though it’s not permanent, gives you a reminder that there is still hope out there for relief.

Float on, friends.

(Note: I think I heard that some insurance companies will cover the cost of a sensory deprivation float. So that’s an option to look into as well, to help offset the cost.)

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.


Behind the Scenes of a Chronic Illness

Every morning, when I wake up, I have to pop my joints back into place. Sometimes I’ll make light of it by singing, “the hand bones connected to the arm bones,” as I’m popping my wrists back into place. Other mornings, I don’t even have the strength to smile.

Once I have my shoulders, knees, hips, hands, and elbows all back into place, I can begin to stand up. I have to stand up slowly because standing up too fast will make me dizzy. Which will land me, if I’m lucky, laying back down for a few minutes or, if I’m not lucky, face first on the floor.

Once I get up and start my day, I begin to evaluate what my pain levels are at. This is where my day begins and sometimes where it ends also. Some days, I can get up and be productive. Other days, making it from the bed to the couch is my biggest accomplishment.

Most days, the people around me don’t realize how bad things are because I’m good at masking it. I function at pain levels that most people wouldn’t even consider getting out of bed for.

Every month, I keep a bullet journal tracker for all of my medical stuff. I’m able to track my pain and dislocations. Because of this, I’ve been able to notice patterns and specific triggers. But what I’ve also learned by keeping these trackers is that I’m really good at not showing how bad things are.

My body moves in weird ways. Ehlers-Danlos Syndrome effects the body’s production of collagen, which effects the stability of connective tissues. My joints aren’t stable and that lack of instability causes dramatic amounts of pain. But this is just some of the instability you can see…

There’s also a lot of instability that you cannot see. Because my connective tissues are weak, Ehlers-Danlos has led to the development of other conditions. I also have a chiari malformation and idiopathic intracranial hypertension. These conditions have begun to cause neurological deficits due to pressure on my brain and excess spinal fluid.

I tell you all of this, not to ask for pity (please, don’t feel bad for me), but to raise awareness.

A lot of times, we (people with chronic illnesses) pretend that we’re doing okay in order to not make the people around us uncomfortable. But 9 times out of 10, when we’re telling you we’re okay…we’re really not okay. But because people don’t know how to respond when we’re honest, we just pretend that everything is fine to avoid the awkwardness. But the thing is, it’s okay if you don’t know what to say because we don’t know what to say either. It’s a hard thing to deal with. But we’re the ones living through it everyday. So if your uncomfortable with it, just imagine how we feel…

You never know what someone is going through. You never know what is going on behind the scenes in someone’s life. It costs zero dollars to be kind, so just do it.

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