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
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.
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.
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
When you’re chronically ill, you get faced with making a lot of hard decisions. Should I have the surgery? Will this medication help me? Is this treatment going to be effective? And many of these decisions can and do vastly alter the entire course of your life. Some of these decisions will change everything.
I’ve known since October than an occipito-cervical fusion (skull to C3) would be unavoidable. I knew the day would come, sooner or later, where I’d actually have to move forward with scheduling the surgery. And then subsequently move forward with the actual surgery itself.
Well, today was the first step. Surgery is scheduled. And it’s really hitting me hard, to be honest. I have 101 days until I will never be able to move my head again. And just…let that sink in for a minute. I’m only 32 years old. Lord willing, I still have a good 50+ years left in me. And I will never be able to move my head again.
HOWEVER, as scary as the whole situation is, there are also positives to this surgery. A lot of them, actually. Although the recovery from this surgery is expected to be pretty tough, the hope is that I will regain some mobility and that I will be able to walk again. All of the symptoms that plague my existence, every day, are expected to reduce – vertigo, fatigue, brain fog, sensory overload, muscle spasms and contractions, memory loss, nausea, diarrhea, loss of appetite. This surgery will greatly reduce the compression on my brain stem and cerebellar tonsils and stabilize all of the unstable joints in my upper neck.
This surgery comes with a high risk of complications. But there’s an even higher potential for a better quality of life.
Ehlers-Danlos syndrome and craniocervical instability and chiari and intracranial hypertension have changed every aspect of my life. Just a few years ago I could run and jump and play with my kids. Even just a year ago, I could ride bikes and jump on the trampoline (very carefully). Things can change and decline so rapidly. And many times we don’t understand the value of our health until it’s gone.
My life will never be the same as it once was. My dreams of running a marathon will likely never come true (I haven’t given up on a marathon altogether, I’m still holding onto hope that I will one day be well enough to walk a marathon). I will never be able to run again…and coming to grips with that was like a punch in the gut. When I started to lose my physical abilities, it felt like I was losing a part of myself. I had to learn not to define myself by the things I could do. I had to learn, through lots of therapy and support from my loved ones, that my physical abilities didn’t define who I was as a person.
I am kind. I am considerate. I am helpful. I am good mom. I am a loving wife. And most of all, I am loved. There is so much more to me than the things my body is capable of physically doing. But we live in a world that caters to neurotypical, healthy people. We live in a society that assigns value to people based on the measure of their physical or monetary contribution. But those things don’t define who you are. Because you can be the most physically fit and highly decorated athlete and still be a terrible human being.
When we were kids, our parents always told us, “it’s what’s inside that counts.” And let’s be real, when we were kids, that statement felt so cliché. But as we get older we really start to understand what our parents were trying to tell us. Do you have a kind heart? Do you value human emotion? Are you compassionate even when other people aren’t looking? These are the things that define who we are as human beings.
So as I move forward into this surgery, I will remind myself that my physical limitations do not define me. I will remind myself that my track record for getting through tough days, so far, is 100%. I will take some deep breaths and just take it one moment at a time, because that’s all I can do.
Am I scared? Yes. Absolutely. I am utterly terrified of the what-ifs and the could-bes. But if I live in the fear, I will stay stuck where I am with no hope of improvement.
So while this surgery is accompanied by a lot of fear, there’s also a whole lot of hope. And the one thing stronger than fear is HOPE.
When someone asks me how I’m doing, there’s the honest answer and the socially acceptable answer. More often than not, I always give the socially acceptable answer just because it’s easier. I don’t have the time or energy to give you the honest answer.
But this is what the honest answer looks like…
I am chronically sick. I’m never going to not be sick. I’m not being negative by saying that, but I am accepting the reality of my situation that unless science finds a cure, this is my life. I have Ehlers-Danlos Syndrome, which causes multiple joint dislocations and subluxations every day. I have chiari malformation and suspect craniocervical instability, which cause severe headaches and an ever-growing list of neurological symptoms. I get dizzy and lightheaded often. I fall and trip and stumble.
I am tired. I am so tired. And it’s a kind of tired that no amount of sleep will fix. It’s a kind of tired that I can feel down to my bones. It’s a kind of tired that ignores my brain when I tell my body to move. It’s a kind of tired that pulls every ounce of strength from my muscles. It’s a kind of tired that leaves me in bed for hours after I’ve woken up because I simply don’t have the energy in me to move.
I am in pain. Yes, I am taking medicine. No, the medicine doesn’t make me pain free. I have never been pain free. I can’t remember a time in my life when I wasn’t in some type of pain. If I ever woke up and wasn’t in pain, I would think I was dead. The pain dictates every aspect of my life. The pain tells me what I can and can’t do. Most days I wake up with at least one joint out of place. My head pain is typically the worst in the morning, but the body pain is the worst in the evening. I don’t get a break.
I am scared. Because I don’t know how bad it’s going to get. Because I can’t stop it. Because I have absolutely no control over it. I’m scared of what all I’m going to lose before I get relief. I’m scared because I don’t know when my body is going to give out on me. I am scared because I’ve had so many falls down the stairs already, what’s going to happen the next time I fall? I am scared because my cognitive function is continuing to decline and my ability to communicate is getting worse.
I am confused. My thoughts are scattered and I have a hard time finding the right words that I’m trying to say and the inside of my head is screaming to get them out. It’s pretty terrifying to watch your cognitive function decline while also having the intellectual ability to know something is very wrong. I get lost in conversation and forget what was saying. I lose track of my thoughts, of my memories. I lose track of just about everything once I set it down. I am confused as to why I don’t understand things that I once did.
I am ignored. When I have a sudden flare in my symptoms and probably need medical attention, I don’t get it because so many doctors before have told me I’m wasting their time. When I go to a doctors appointment with a list of symptoms that are getting continuously worse, I am dismissed as a fat, depressed, hysterical woman. I am ignored by the very doctors who vowed to do no harm.
I am sad. I am sad that my life has been changed so drastically and that it can never go back to the way it was. I lost the ability to run. Then I lost the ability to cycle. My ability to think and speak and write has been greatly impacted. I am sad that I have to continue to adapt my life and adjust to my ever-growing list of limitations. I’m sad that that I’ll never have the life that I need nice planned for myself.
But, in spite of all of that, I am also full of hope. Because if I don’t hold on to hope then I have nothing to look forward to. I have hope that my new neurosurgeon will be able to put the pieces of the puzzle together and help improve my quality of life. I have hope that science will, one day, catch up with this illness. I have hope that doctors will, one day, learn that listening to their patients is more important than their precious egos.
And I am determined. I am determined to fight for Ehlers-Danlos awareness and education in the medical community. I am determined to let other chronically ill persons know that they’re not alone. I am determined to not let the words of dismissive and neglectful doctors effect my emotional health.
So yes, I am sick. But I am also really, ridiculously brave.
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.
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.
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.
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.
Spoonful of Stripes 