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.

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.

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