Month: October 2017

It Wasn’t a Christmas (Halloween) Miracle.

There are a lot of inconvenient things in life: flat tires, the Flu, traffic, rain, paying rent, the list goes on, oh AND living your life out of pill bottles.

Whoever created the magical concept of medication is a genius. Without it I would be confined to my bed. However, I still hold a grudge to the fact that in order for the medications to work I must take them every day, EVERY. SINGLE. DAY.

For 2,125 days (approx.) I have lived out of pill bottles. And we aren’t talking take one pill and move on with my day, no, we are talking a handful of pills everyday.

I’ve found routine in it now, just like getting dressed in the morning, I must also take my medication. However, there is still the rare occasion in which I will forget, kind of like the days you walk out of the house and forget your keys. It’s an inconvenience, like getting a flat tire, or the Flu, or being stuck in traffic.

I did this the other day. Halfway to where I was going I realized I had forgotten to take my medication, and I didn’t bring them with me. I made the decision to not turn around. I knew I was going to be gone all day, but I told myself that I would be okay, that I had skipped taking them in the past before and I was fine, this wouldn’t be any different.

And it was true, I was fine.

For a while.

In fact I was fine for so long I started to think that maybe it was a Christmas (Halloween) Miracle. That somehow my brain had healed itself after 5 years. I tried not to think about the possibility for long because I didn’t want to jinx it, but as the hours went by, and I felt fine, I started to wonder more.

And then 5 o’clock hit.

I had been awake and functioning for 12 hours now without the medication when the brain fog started to creep around. Brain Fog is a very strange symptom for those that have never experienced it before. It’s one of the most common symptoms POTS patients experience, and I myself have had my fair share of it over the years. The best way I can describe it is confusion. When it happens I am aware that I am doing something, for example walking, however its hard for my brain to connect the pieces, where I am walking to, why I am walking there, etc. I complete the task, walk where I need to, and do what I need to, but it’s difficult for my brain to process the fact that I am actually doing it. It’s a feeling of confusion.

The brain fog creeped in and I realized that I was no longer fine, I mean I was FINE, I wasn’t dying, but I also wasn’t normal. I could feel the POTS, the symptoms I had once struggled with for so long, and worked so hard to make non-existent, they were creeping back. And not because my POTS was flaring, or because my treatment plan had stopped working, but because I made a choice. I chose to not turn back around. I chose to attempt to ignore something that has been un-ignorable for the last five years.

As I stood in the grocery store staring at all the different styles of canned tomatoes for ten minutes searching for ‘tomato paste’ only to realize I had been staring at it and reading it the entire time right in front of my eyes, I realized that it was not a Christmas (Halloween) Miracle. I had not been miraculously healed. The POTS had not up and left my body somehow. I read through my grocery list five more times before I actually put the pieces together and realized I had everything I needed. I checked out and thought to myself, ‘Merideth, how stubborn are you???’ ‘Did you honestly think a Christmas (Halloween) Miracle would happen 5 years later, and you would magically wake up one day healed???’

My mom was right, she always is.

She told me to turn around that morning, but I told her I would be fine. I rolled my eyes through my phone screen and called her ‘overbearing’ in my head. But she was right, she always is.

I don’t know how many times it will take me to learn this lesson. I am not sure why I repeatedly fall into this exact situation and make the same decision. I choose my plans over my health every time, as if they are more important, as if I am invincible. I am not invincible.

Maybe it’s that I’ve forgotten the pain, I mean I’m sure it is, because that’s the only logical answer. I must forget that even though I was fine for 12 hours, that for the next 12+ hours I’m going to pay for the choice I made.

I am going to regret not turning around.

I woke up the next morning as if everything was back to the way it had been. As if the day before I didn’t stumble aimlessly around the grocery store, or feel as if my brain was going to somehow just fall out of my ear. But it was too good to be true, I should have known I was ultimately going to pay for the decision I had made.

I was sitting in my lab class and I felt the headache begin to form, the ones I used to experience on a daily basis four years ago. The kind that make you feel as if your brain is non-existent because it just hurts to even think about walking. And then as I sat in lecture the nausea I had forgotten the feeling of, reappeared like an old friend. The one that used to accompany me daily four years ago. And not the upset stomach kind, but the kind where your stomach feels completely empty, yet somehow you feel as if you simultaneously are going to vomit everywhere. And as I walked to my friends car I struggled to keep up, because my legs were too weak.

I crawled in bed and wanted to hide under my pillows forever. I lied and told my mom I had a headache from the change in weather. I couldn’t tell her she was right, that I should have turned around the day before. I laid in my bed instead and felt a sense of guilt, and frustration.

Guilty because I knew the moment I realized I forgot to take my medication that I should have turned around. I knew what the right answer was, but I didn’t choose it because it would have been inconvenient. I would have been late to where I was going. I told myself I would be fine. Frustration because I have to live out of pill bottles. Because the Christmas(Halloween) Miracle didn’t happen. When I was younger I used to pray every night that I would wake up and I would be healed. I eventually realized that after three years of praying for healing, that it wasn’t going to happen and I needed to suck it up and learn to deal with it, but I still was frustrated because I thought maybe just maybe it would happen.

I am not healed. The POTS is still there. I still must live out of pill bottles.

It’s inconvenient. The whole situation is inconvenient. There is nothing convenient about not being able to maintain your health and wellbeing on your own. Heck, while we are on the topic of inconvenient things, let me hit you with a big one, falling 10 ft head first onto a solid ground, thats REALLY inconvenient.

The only convenient situation here is that I am not dead, and while I throw my pity party for myself in my bed, I can’t exactly get myself to realize the convenient things in the moment.

There was no miracle the other day. I knew all along there wouldn’t be, but I told myself otherwise.

The fact of the matter is that I have POTS, I still have POTS 5 years later. I live out of pill bottles, and will continue to live out of pill bottles. It’s inconvenient. I don’t know if this will ever change. For every year I get farther out from my accident, the likelihood of me healing increases a tiny bit sure, but not as much as the chances of me having to live with this for the rest of my life increase.

I would be lying if I told you I wasn’t healing, because I AM healing, but slowly, so slowly that it’s basically impossible to understand. Which brings me back to the day I was diagnosed, and the only words that followed after the diagnosis “this is not a sprint, this is a marathon, this is not going to take months to improve, this is going to take years, many many years”.

So maybe the other day when I didn’t turn around, when I forgot the feelings of the payback that would occur, maybe I was just testing the waters. I mean if you ask me it’s been many years. How many years was he talking about when he said many? I’m ready to get this show on the road! But I must be patient, I must learn to pick my health over my plans, which I usually do a great job at, except for the rare occasion in which I’ve decided I am somehow deserving of a Christmas(Halloween) Miracle.

It’s inconvenient to live out of pill bottles, but it’s more convenient than dying, and I do not want to die.

I have this naive idea that the day it is determined I no longer need to live out of pill bottles that I will just wake up, stop taking them, and move on with my life. But this too is another one of those stubborn thoughts. It won’t work that way. The day that I no longer need the medication to survive will be a day full of difficult withdrawal. It will be an entirely new inconvenience right before my eyes. It will be a day, and many months, and many years of training may body once again how to care for itself on its own, without the extra support. It will be inconvenient, because taking the pills would have been easier, and I’m not ready for that yet.

I didn’t get a Christmas(Halloween) Miracle, I got a slap in the face from reality. I got a ‘told ya so’ from my mom, (or at least I will within the next hour after she reads this). I got the ‘oh hey remember me’ from the POTS that still lies inside me.

And thats okay, for now, until I forget all of these things, and somehow stubbornly manage to put myself through it all again. Because that’s what it’s like 5 years out from something terrible, you hold onto the tiny tiny bit of hope you have left for improvement, and you pull it out and use it as an excuse when you’re too foolish to admit you need to turn around, to own up to the fact that you live an inconvenient life but must take the necessary steps to make it convenient anyways.

Maybe now that this is in writing I won’t forget. Maybe when I think for a second to keep going, I will remember this post, and I will turn around.

Probably to, because I’m stubborn, but it’s worth a try.

And maybe if it doesn’t remind me to turn around, it will remind you.

 

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The Medical System Failed Me, and I Work in it Now. 

I am the product of a failed medical system. The process that was designed to treat those that were ill, allowed me to deteriorate for six months after suffering from a Traumatic Brain Injury, before it began to heal me. I work in a failed medical system now.

You are probably thinking I am crazy, or that my wording is wrong, maybe I meant to say ‘imperfect’, and while that too is a good word to describe the medical system that I was treated in, the word failed also works, because at the end of the day when you lay it all out on the table and you look at it, truly look in depth at all the little bits and pieces, you will see that I was indeed failed by the medical system. Allow me to explain with the cold hard facts, not the opinions, or the emotions involved, just the facts. Let’s walk through this together and then let’s talk about why it happened, and how we can fix it. Not to point fingers, or blame, but to learn, because that’s really what mistakes and failures are all about, how we learn and grow from them.

October is Dysautonomia Awareness Month and one of the greatest ways to raise awareness is by learning from ways in which things went wrong. Learning the small pieces that we once before might have missed. Opening our eyes wider, and becoming more aware, so that next time we are better prepared. So that next time there is no six months of deterioration.

December 7, 2012-

  • At approximately 8 pm I fell 10 ft. out of a cheerleading stunt, and landed on a hard basketball gym floor, head first. I lost consciousness, and can not tell you exactly what occurred leading up to the fall.
  • EMS was called, I was placed into a C Collar, onto a backboard, and transported to the Adult Trauma Center in the city. (I was 13 at the time of the accident)
  • In the ED scans were done, and report was given to my dad when I was discharged only a few hours after being admitted. My diagnosis was that there were no abnormalities noted as far as a brain bleed, or any other fractures. My C-Spine was cleared. I was okay to go home, and rest. I also “most likely had a concussion”. I was sent home with a Neck Brace for comfort and told to avoid any excessive movement of my neck.

A Week After the Accident

  • I was seen by my primary care physician at my Pediatricians office to follow up after my accident. At the time of my accident it was not yet mandated that all high school athletes obtain a baseline concussion test at the start of the athletic season. Due to this I had no baseline test results to compare my current results after the accident to. 
  • A Concussion Test was performed and the results were compared to average results for a female aged 13. It was determined that my results were abnormal compared to the baseline readings of others. I was formally diagnosed with a concussion at this time.

At this time I started to develop symptoms such as dizziness, nausea, and trouble focusing. All of these were dismissed as side effects of the concussion. We were reassured that once my brain had healed from the concussion these symptoms would resolve themselves.

2 Months Post-Accident (February 2013)

  • At this time after having repeated the concussion test bi-weekly, 4 times overall. It was determined that my results were most likely back to my baseline, compared to other baseline results from 13 year old females.

Shortly after being told my Concussion was resolved

  • I was still suffering from symptoms of dizziness that had manifested into actual syncopal episodes. The nausea, and brain fog continued, as did the overall weakness I suffered from.

3 Months Post-Accident (March)

  • My mom scheduled an appointment with Cardiology. I was evaluated and it was noted that I had an elevated heart rate.
  •  I was placed on a Heart Monitor for 30 days, and was instructed to record any syncopal episodes.
  • My results came back “normal” and I was diagnosed with most likely suffering from Neurocardiogenic Syncope. This is a blanket term also referred to as “Vasovagal Syncope” according to the National Institute of Health this is a title given to a person that suffers from “unexplained syncope”. This is considered a syndrome that occurs as a result of “triggering of a neural reflex that results in a usually self-limited episode of systemic hypotension characterized by both bradycardia (slow Heart Rate) and peripheral vasodilation.”

April, May, June, July

  • I continued to suffer from increased Syncopal Episodes. What started as 1-2 increased to becoming sometimes upwards of 15 on a bad day.
  • I developed what appeared to present itself as seizures.
  • I continued to end up in and out of the ER from becoming so weak due to the continued syncopal episodes, and the physical toll they had on my body. 
  • I continued to be seen by different specialties. When Cardiology found “nothing wrong” I was passed on to Neurology. Neurology assumed maybe I was suffering from a Chiari Malformation- An excess of fluid build up in the brain stem causing Vertigo. When this came back negative and nothing could be found I was sent to Endocrinology. We weaved in and out of the different health care systems in the state. There are three main health care providers, and we saw just about all of the specialties in each one. I eventually landed in an Allergists office (because that somehow made sense) and my mother was told that it was time to consider a diagnosis of Conversion Disorder- Meaning that although there was nothing physically wrong with my body, I believed there was, therefore I was causing my body to produce symptoms that had no real origin. Basically he told my mother that I was suffering from a Psychiatric Condition and it was time to accept this, and move forward in the steps of treatment for it. 
  • Sometime in July I landed in the ER again, after a work-up that once again showed I was normal we headed back home once again defeated, and in search of answers. My mom was pulled aside by a nurse on our way out who informed my mom that it wasn’t her place to inform my mom of what she was about to, and legally speaking she could get in a lot of trouble for going against the MD’s discharge diagnosis, however she had seen my chart and read up on me and was convinced that I had something called POTS, Postural Orthostatic Tachycardia Syndrome. She was certain that this was the answer, and that my mom needed to go home and research it.

My mom did just that, which along with her research she was convinced too that this was the answer. My mom read that there were two places in the country that specialized in POTS treatment, the Cleveland Clinic, in Cleveland, Ohio, and the Mayo Clinic in Rochester, Minnesota. My mom called and made an appointment for me to be seen at the Cleveland Clinic, a 5 hour drive from our home.

August 5,6,and 7th, 2013

  • We made the 5 hour journey to the Cleveland Clinic to meet with the Pediatric Neurology team. After the initial meeting a giant list of tests were explained that would need to be performed to confirm the expected diagnosis of POTS, as well as a handful of other tests to rule out associated disorders and syndromes that often go along with a diagnosis of POTS.
  • The initial one night stay turned into three. Labs were done to test just about every level under the sun. A Tilt Table Test was performed (the true diagnostic test for POTS) a QSART test was performed (also known as a Sweat Test), an EMG was performed.
  • After all the labs came back, and test results it was confirmed that I was a classic case of POTS. All my numbers showed the diagnostic criteria  for the diagnosis, and not only did they meet the criteria they were on the elevated end of the criteria, meaning I had a pretty significant case of POTS.
  • A medication outline was created. The hope was that with an increase in certain electrolytes, and a specific beta-blocker that had been known to help POTS patients, I would begin the road to recovery.

Mid August-October 2013

  • I developed what is documented in research studies as what is one of the worst noted reactions to the Beta Blocker I was placed on. My potassium levels dropped to critically low levels, a possible but very rare side effect of the medication. This caused a handful of hospital stays in itself that required IV Potassium Chloride infusions to bring my levels back from such critically low points. We are talking the 1’s and 2’s, to which normal range is 3.6-5.2.

October 2013-Mid 2015

  • Over the course of the next two years continuous medication changes occurred under the supervision of the Cleveland Clinic until the right combination of medications was reached. This was a very specific, time consuming process that took lots of patience, and tweaking but ultimately lead to a combination that allowed me the freedom of the abilities I once had.

Now I type all of this out not to point out mistakes and certain blame on specific medical professionals, if that was my intention I would have named specific providers, etc. But it’s not. Like I said the point of this is education. Now that you have all the cold hard facts in front of you let me walk you through them. Let’s look at what was done, what should have been done, and how we can further improve.

  • I was a thirteen year old. The average age that is deemed acceptable to be seen by an adult trauma center is 15 years of age. I was two years short of this. In the grand scheme of things this is not the biggest error, could thinks possibly have played out different had I been taken to a pediatric trauma center the night of my accident? Maybe. There’s a chance I would have been kept overnight for observation, maybe more would have been done as far as concussion observation, and diagnosis, but that’s really about it. This was a call made by the EMS crew for whatever reason. Maybe the pediatric trauma center was on diversion, who knows but this ultimately was not the biggest problem. Had the on call neuro peds team potentially been more prepared to evaluate an accident like mine? Maybe, but also maybe not. This one is one of the aspects that really could have gone both ways and most likely would have still provided the same outcome.
  • I was discharged within hours after my accident. This is the factor here that is more significant than my being seen at an adult trauma center. I fell ten feet head first onto a solid ground. I lost consciousness. I was still for the most part deemed a “child”. While I was conscious and alert upon my arrival at the trauma center, I was still in severe pain, and had sustained a rather traumatic injury. Being discharged only a few hours later was an amateur mistake. I should have been kept for observation. There is always potential for a brain injury to manifest itself in the hours following the event. I am no medical genius in these instances but I have come to learn quite a lot. The possibility for further swelling, or potential bleeding is still possible. Altered levels of consciousness can also arise, and other potentially dangerous symptoms can appear. I am lucky that none of these things occurred the night I was sent home, but they were all possibilities, and ones that should have more strongly been considered. It is known that the human brain is not fully developed until the age of 25, I still had 12 years left at that time. Extreme caution should have been taken. It was not. My dad had very little information and instructions given to him at the time of my discharge as far as things to look for and be aware of, and treatment to be used.
  • I had no baseline concussion test. This problem has thankfully been addressed and solved since my accident, however 5 years ago it was not. Had the baseline concussion test been initiated at the time, there most likely would have been more information to be obtained and further aid the understanding of the trauma my brain sustained.
  • The basics were often skipped over upon arrival at ED’s, and appointments. Instead of looking at the cold hard facts, the symptoms were looked at, and how to fix them was investigated. Instead of the thirteen year old female that sustained a traumatic injury to her brain falling 10 ft, I was the teenager that was suffering from unexplained syncope, and dizziness, who happened to have a cheerleading accident in the past (if they even made it that far).
  • Anytime Syncope was heard conclusions were made. There’s a stigma in medicine that unexplained syncope is almost always a product of a psychological problem.

It’s frustrating, and to be honest I’ve opened and worked on this blog post three separate times over the span of three weeks. Every time I get a little bit further in typing out the explanation and then it gets too much and I have to stop and come back to it at a different time.

It’s frustrating because all the explanations were right there in front of the 50+ medical professionals I saw in the span of 6 months and none of them found it. For whatever reason it got looked over. 

I get frustrated typing about it because the truth is it was so simple, it was there in big bold letters, but it got looked over.

I hit my head from a 10 foot fall. When my head landed on the hard surface first it caused my brain to shift inside my skull, causing the concussion. When my brain shifted the trauma affected my autonomic nervous system, located where most of the force centralized in my brain. This caused autonomic distinction, POTS. All of the symptoms: Brain Fog, Syncope, Systematic Overload of Senses, Nausea, etc. the Autonomic Nervous System controls all of this. 

This wasn’t rocket science. This didn’t take a genius to understand. Even myself figured it out and pieced the puzzle together. They could have too, but they opened up my chart and they saw words like conversion disorder, psych case, etc. and I got looked over.

Their diagnosis of ‘psych case’ turned me into a psych case. 

I got so tired of being told that there was nothing wrong with MY OWN BODY. That the feelings I was feeling and the symptoms I was experiencing weren’t true that the though of living became more painful than the thought of dying. 

I used to close my eyes at night and secretly pray to the god I had stopped believing in that I wouldn’t wake up the next morning.

It was physically draining, but the emotional toll it took on my body was so much worse. 

I still have problems to this day emotionally. I have a hard time accepting that it’s okay to feel how I feel. Expressing emotions is even more difficult because I became so used to keeping them in.  

All of this happened because of a failed medical system. You might think that all of what I felt was dramatic but the sad truth is that is just the very condensed version of it.

Those six months were hell.

But I don’t blame the medical professionals. It’s not their fault. Could they have spent more time ruling out every tiny thing, yes they could have but they would have gotten reprimanded, they were taught to treat and send off. There’s always going to be another patient. There isn’t enough time to rule everything out on everyone.

The problem isn’t the medical professionals it’s the medical system. It’s designed to take a patient, strip them of everything that makes them an individual with feelings and a story. To replace all of that with a barcode number and a list of symptoms. You’re no longer Merideth who was involved in a difficult traumatic accident, you’re patient 257 who’s experiencing syncopal episodes.

The problem is that we’ve become accustomed to this. We’ve allowed ourselves to adapt this form of practicing medicine. It’s more efficient which brings in more revenue. I’ll be the first to admit I’ve caught myself practicing medicine this way and I will forever be ashamed of it.

I could speak for days on this topic, I have so much to say. I will leave it at this for now, medical professionals be the change for the better. Go into things with a clear head, listen to your patients, follow your gut, and advocate like hell for them. Don’t throw them into a category they are an individual. Don’t give up on them. And patients, nobody knows your body better than you do. Whatever you do, don’t give up. There is a light at the end.

 

October 1st….

I celebrate three times a year. My Birthday on May 20th, the month of October for Dysautonomia Awareness Month, and December 7th, the anniversary of my accident.

Each of these celebrations brings different feelings, May means I’ve grown a year older, which in my opinion is a good thing since most of my friends tend to be a few years older than me. October is a big, long celebration, but really more so an attempt to do everything I can to educate my peers, and those around me about the different forms of Dysautoomia, the category of Autonomic Disorders in which POTS falls under. And December, to be blatantly honest, I celebrate it because it means another year here on earth, after the day five years ago in which I didn’t die, but most certainly could have.

Today is October 1st, this means that the next 30 days I will try to do everything I can to raise more money for research, speak at a variety of places to bring awareness, and overall share my personal journey, to put a face to POTS.

I decided to update my blog this October as this October marks the fourth October that I have had it, and so much has changed. I realized that as I opened up my blog each time to type I was met with a picture of a girl I struggled to recognize. She was sick, so frail, and in a wheelchair, and somehow she was me. That’s not who I am anymore, I’ve come so far since then! If you’re a frequent visitor I’m sure you’ll realize my header “My Journey with POTS- and a side of salt please” has changed. I did this because I have changed. While I do still have POTS, and very well may for the rest of my life, I have come to the amazing point in the journey where it is no longer something that defines me entirely.

I do still live out of pill bottles to function, and I do still have days where I feel like I’ve woken up and fallen on my head all over again, but for the most part I’m doing well.

Four letters I wasn’t so sure five years ago that I would ever use to describe myself.

I would be lying if I told you I remembered what it felt like to wake up each morning in a body that was able to care for itself on its own, because I don’t. I’m not sure I ever will. The routine of waking up each morning, counting out pills, and swallowing them has been my life every morning for the last five years. I have forgotten what it feels like to live entirely off of my own health.

But that is okay.

In life we have to make sacrifices. We have to be willing to give up some things, in order to achieve others. For me if that meant sacrificing the ability to maintain my health solely on my own body doing in order to be able live a life of freedom, unrestrained to a hospital bed, then in my opinion thats worth it.

This October I’m thankful for a continued chance to be able to explore all that life has to offer. If you’re new to this blog well, get cozy and pop some popcorn because there is quite a lot to explore in here, but if you’ve been around a while, thank you. Thank you for continuing to support me. Thank you for listening to my rants, my trials, and most importantly my realizations.

Happy October friends.