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.

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.)

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.

The Curse of Being a Medical Anomaly

I never dreamed that one day I would wake up sick and I’d never get better.

My life wasn’t always this way. I used to be *relatively* healthy. But I’ve always had pain. As a kid, doctors always said that I just had growing pains. But as I got older, the pain got worse and worse.

Every time I would go to the doctor and explain what was going on, they would do lab work and run tests. And every time, it would all come back within normal range. But when you’re a medical anomaly, normal isn’t necessarily your normal.

At the age of 26, I finally had a doctor who listened. I had a doctor who sat down with me long enough to go over my ENTIRE medical history…something that no doctor had ever done before. She was the first and only doctor I’ve ever had who was willing to actually take the time to consider that what was going on with me could’ve been something more than the typical or common ailments. She was the one who diagnosed my Ehlers-Danlos Syndrome.

It’s almost like, when they can’t figure out exactly what’s wrong, instead of admitting they may not know what the issue, most doctors will accuse you of faking it or being dramatic instead of investigating further.

Now, I recognize that it is difficult to connect things like joint hypermobility, clumsiness, chronic nausea/stomach pain, and tinnitus. However, I do think that many doctors have become complacent. Doctors are taught in medical school, “when you hear hoofbeats, think horses not zebras.” But what happens when you’re a zebra, not a horse? Doctors are encouraged to NOT take the effort if they don’t easily know what the issue is.

It’s like doctors don’t realize, understand, and/or care that their actions or inactions directly impact my quality of life. They don’t realize that their negligence to treat my symptoms may cause me to be unable to go to work, which results in lost wages, which results in financial stress, which causes anxiety, which causes a worsening of the original symptoms…it’s a cycle that is the direct result of a doctors decision.

Sometimes, when the symptoms get too severe, I physically cannot play with my children…which is something I will never get back. My children will never be little again. I only get one shot at making childhood memories with them. The physical pain and other symptoms aside, this is most painful thing about being dismissed by doctors. My kids will never be little again and I will never get this time back.

Going to the doctor, for any reason, when you have a chronic illness is weird.

It’s like, imagine everything in your house is on fire…you’re standing there and the fire department pulls up. They ask you to describe the fire to them and MAYBE, if they can figure out what caused it, they can put it out.

You start to explain that some areas are more enflamed than others, but that there’s fire everywhere. They stare at you dumbfounded, as if they don’t understand the words you are saying. So you try to elaborate. You explain the fire in the curtains is the biggest, but the fire in the photo albums might be doing the most damage. But also, the fire in the couch is incredibly inconvenient.

The fireman takes a look around and notices that your TV is on fire and suggests the cause to be electronic-fireitus, but if that were the cause, there would also be some fire in the DVD player. You try to hide your irritation as you sigh and explain to him how the DVD player has actually been on fire for years. You didn’t mention it because it’s always been a relatively small fire, compared to the rest of the fire. You point out to him that the DVD player fire is right next to the bookshelf, which has much more fire.

He glances over at the bookshelf and shrugs. He tells you not to worry about bookshelf fires, those just happen sometimes.

He begins to notice your frustration rising and suggests that the fires would probably all go away if you stopped being so negative about them. He advises that if you’d lose weight, they’d probably just go away on their own. He tells you that you should try doing yoga to help your relax and stop being so dramatic about the fires.

We spend our lives being told that doctors are here to help. They say they want to help make people’s lives better. But when it comes down to it, they don’t see their patients as anymore than a name on a piece of paper. They’ve taken away the humanity of it.

There are treatments and medications that can improve my quality of life and alleviate some of my pain, but I am at the mercy of doctors to determine whether or not I am allowed access to them.

We’re supposed to trust doctors to help. To listen to us and treat us. But what about when the majority of the medical community fails you? Then what do you do? What are my options when I run out of options?

Now, I’m not saying that ALL doctors are like this. Some doctors still care. Some doctors recognize you as an actual person. Some doctors won’t give up until they’ve found the root cause of the issue. But I haven’t found that here. Before we moved to Georgia, we lived in Texas. The doctors I had in Texas were some of the best doctors I’ve ever had. But here in Georgia, it’s a whole different story and it’s a shame.

It’s a shame the patients have to be dying (and sometimes not even then) to be taken seriously. My heart breaks for the number of people who live in agonizing pain because of doctors who won’t listen.

I’ve heard doctors say, “don’t confuse your Google search with my medical degree.” To which my response is…don’t confuse your medical degree with the crap I’ve had to live with.

To all the people out there being ignored by doctors…you are your best advocate. Keep pushing and don’t give up until you find someone who will listen.

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