Dark Depths and the Woman in White

My entire life I lived with symptoms, symptoms that seemingly didn’t fit together. All the doctors looked only at what they were trained for, sticking with what they knew best. But when more than a decade goes by and you are still struggling to live a normal life isn’t it time to wake up and realize that there might be a bigger picture.

After completing high school and entering into the world of college everything seemed to be going pretty steady. My symptoms were manageable enough to attend class, but after my classes ended I would travel home weary and tired. The brain fog consumed my thoughts. I slept when I could and never went out at night. My life consisted of going to and from the university just for educational purposes, the social life was still at a standstill.

Having been diagnosed with POTS my life consisted of maintaining the symptoms and hoping flare ups would be left at bay. My life was also very limited after seeing the cranial osteopath, I was told what I can and cannot do. The list of activities I couldn’t do grew practically every trip. It was hard to have fun when you knew that anything out of the ordinary could mess you up. Even sitting in a different chair could jam my tailbone, or lying on a pillow too high which would push my skull forward. I had to calculate my life down to a tee. Anything else would result in a flare up which would cause me to miss class, and even the disabilities office refused to work with me on my absences. I had to push myself through or face the thought of being forced on medical leave from the university and be pressed further behind on my degree progress.

Year after year went by and I could control most of my flare ups, I was far from perfect but it was still better than being bedridden. I was succeeding in school maintaining a high GPA even with my numerous absences and brain not being there half the time. In my junior year my cardiologist called me and told me he could no longer see me because his practice was refusing to see POTS patients. This happened once before when I was a minor still and the practice said no minors. He referred me to another doctor in the practice who would solely fill my prescriptions. When I finally had an appointment I was told he would only fill some of what I needed. The main problem was the sleep medication I was on, which he refused to refill. My entire life I have had sleep issues and after seeing the old cardiologist for a while he put me on Trazadone and after the Trazadone didn’t work he prescribed Ambien. The thing with Ambien is that doctors really don’t want you taking it every day for long periods of time. By this point I had been on the Ambien almost 3 years, prescribed to take up to 20mg a night every night. The next doctor refused to fill it, and I was left with my lingering supply to hopefully make it to the next doctor. Ambien has a nasty withdrawal and to flat out not prescribe it to someone who has been on it for years is wrong, especially when you know it does have a withdrawal process. And the real kicker was that not sleeping was a huge trigger for my flare ups.

I decided it was time to leave that practice all together since the doctor that would see me was not filling half of my medications and not caring about weaning me off of anything. Luckily I was able to make an appointment at a top heart center in the area and see a doctor who specifically treated POTS patients. The appointment was months away but I could wait, my hope was that she would recommend something else to help me feel like a human again. My life was so controlled by my diagnosis and I couldn’t break free no matter what I tried. I was starting to think I was a lost cause.

When the day of the appointment rolled around my mother came with because this was an incredibly important event to attend. The massive heart center must have spanned over 3 football fields with an extremely modern design. I was hopeful just walking through the door. I needed desperately a fresh take on my POTS diagnosis. When we were ushered into the backroom the doctor enters wearing the typical white doctors garb. She was beyond intense for having the thinnest frailest body imaginable. She talked fast and at some points I couldn’t even understand her. She asked me to tell my story, which I did.

“You don’t have POTS”

Excuse me? Wait what? What did she just say? I looked at my mother, as she looked back at me almost in a rage. What do you mean I don’t have POTS? She asked me to take away the POTS diagnosis and describe my symptoms.

“Because of my POTS…” She stops me and says no, take out POTS, and just describe the symptoms.

“I can’t exercise without my POTS symptoms…”

“Without the POTS…” she exclaimed.

I continue. Explaining my situation was very difficult without adding in the POTS symptoms. I was associating everything with that word. My brain fog, the blood pressure changes, the intolerance to hot and cold, the inability to exercise, the aches and pains I have all over, the chronic fatigue, all of my stomach problems, the cold sweats I would get, even my sleep issues. Everything I could think of I associated with the POTS diagnosis. Well after all I’ve been told this over and over again for years by my former doctor. Everything I had was POTS. All the symptoms were POTS. I couldn’t do this because of POTS. I couldn’t do that because of POTS. It was hard explaining it any other way.

But it was a misdiagnosis. Everything I was told was not true. After living with this diagnosis for 6 years I was told I do not have POTS. I was skeptical. So was my mother. In fact she started back talking the doctor who immediately talked over her. My mother is no wimpy woman and would never let me be pushed around by a doctor. She voiced her opinion while I sit there stunned, now rethinking practically my entire life.

The doctor told us that POTS is a regularly misdiagnosed syndrome since there is no official test to prove you have it. It is simply diagnosed by looking at your symptoms and labeling you with something so they can begin treatment. She also added that most people who truly have POTS are elderly people who can’t get up since they immediately pass out. Things like this did anger me since I knew it wasn’t true. I know in my case it might not have been POTS but by doing research it is most common in adolescents. Not once had I heard it be diagnosed to elderly patients only. She also questioned if my stomach problems actually existed which also frustrated me till no end. This woman sat there and decided to pick me apart piece by piece and tell me it was all a lie. I was questioning POTS but I was not questioning my stomach issues or migraines. Let’s just say this woman was a straight up bitch in white that had no problem exploding your brain with completely new information then stomping on you by insulting the support at home. To end the appointment she told my mother to be more accepting of this news and for me to keep a journal every day, then I would see her in 6 months. To see the look on darkmy mother’s face must have been priceless. But I signaled my mother to not say anything so we could get out of there and have a real discussion with just the two of us.

As we were walking out the door she also added that she would refer me to a rheumatologist because she thinks I might have nerve damage that might be causing some of the symptoms. We finish up the scheduling and head back to the car where I immediately start having a meltdown.

And there I was, back in the dark yet again.

Fall of a Titan

How long do you wait when you’re status isn’t improving?

Midway through my junior year of high school I was being home schooled and was completely bedridden after a diagnosis of POTS. My days consisted of waking up with deep pains all over my body with no energy to even drag myself out of bed. By the time I made it to the bathroom and back I was completely out of breath. I would collapse in bed and wait the day out. Time seemed to not exist. My mind was completely blocked with brain fog and any attempt at doing anything just wouldn’t work. I couldn’t read for my mind jumbled the letters and exhausted itself within minutes. I couldn’t talk because the stutter was so bad. The very thought of opening my mouth caused such immense pain. On some days I would strictly text to communicate with my mother since the slight movement of my fingers was less painful than actually opening my mouth.

The fatigue was all-encompassing and most of the time I needed the assistance of my mother to get around the house, most of the time leaving me with no choice. I mastered what I called the “zombie walk”, when forced to get up I would drag my legs and walk with my arms and back hunched over. In a sense I looked like a zombie walking around the house, which could come in handy if I needed to blend in during the apocalypse. For me this was the best I could do, my energy levels were just not there. Then to mention the actual process of changing positions, once I got some place I liked to stay there for a while because getting up was going to just absolutely be miserable. My eyes would “change” and my mother would hold on to me for a good 5 minutes. I felt pathetic. I felt weak.

My entire life I was raised to be strong, to be independent and rely on no one. And here I was not even able to get out of bed by myself. On plenty of occasions my mother would find me in bed broken out in such a cold sweat unable to move that my then step-father would pick me up and plop me in the car to then go to the hospital. For those of you suffering with the POTS diagnosis you know how much fun the hospital trips are. When I would go to the hospital the doctors would shake their heads and find nothing really wrong, so all you get is hydrated and sent home. For me personally I struggled with severe chest pain and the inability to breathe, which had me going to the hospital frequently. But upon arrival my vitals were fine and the doctors just didn’t care. When I described symptoms that were considered heart attack symptoms I would be practically laughed at and told I was far too young to actually have a heart attack. And throughout all the extreme flare ups I was never admitted to the hospital, well with clear vitals why would they? And back in the day doctors had no idea what POTS even was which made hospital trips even more pointless.

Each and every day I slept, sleeping was all I could do. I would dream of a life where I was actually living. Waking up with my reality was a nightmare all itself. Since I was unable to move much my doctor put me on medication to keep my muscle retention and keep my body from creating bed sores. From there we tried medications for energy, all serious controlled substances that all had the adverse effects on me. I tried Adderall and Ritalin, both made me so exhausted and in so much pain that we stopped immediately. The doctor was stumped since he never heard of those medications having that effect. I tried every supplement in the book, all with no success. My life consisted of staying in bed and sleeping my life away. I felt like I was hibernating and some day I could return to the land of the living.

sleeping titan

After a year of suffering with POTS my stomach started having issues again. This time I felt like I had a rock in my gut every time I tried to eat. So the combination of not eating, not being able to move much, and everything else made my migraines start to flare horribly. When we called the doctor treating my POTS he suggested I get tested for gastroparesis. The two tests to check for this was an endoscopy and a stomach emptying test. The endoscopy was scary since I did have to be put under, but it came back clear so we proceeded to the emptying test. This test was pain free but did require me to eat radioactive eggs, so that’s always interesting. The results told a clear story of how my stomach would not empty properly and the diagnosis of gastroparesis was given. When on average it takes a person to digest a meal maybe 2 to 4 hours, it took mine 8 hours. Again I was happy, another question answered! But there was at the time no FDA approved medication for treatment.

My body was failing and there was nothing I could do. I went through hell as a child and came out stronger, but this diagnosis knocked me down and took my life. I was unable to be like everyone else. I was unable to feel like a person. I was alive, but I was nowhere close to living.

The Wound That Never Heals

This is a continuation of my journey with my father, read part one, part two, part three, or part four.
There are always consequences to your actions, even if you are just a child. I didn’t know what was going to happen next in regards to my father, in my brain I guessed taking the initial action would be enough. I would never ever have to face him again, I wouldn’t have to fear what was coming next. But I was young, and I was oh so naive.

The first round of court was focused on making my father out to be neglecting. Our first lawyer said the abuse claim wouldn’t hold up in court since there was no actual “abuse”. That was like a slap in the face, even our lawyer didn’t believe I was in danger. I was told what to say and how to say it, nothing which was actually true. Because I was a minor most of the talking was on my mother’s end since she held custody. But what doomed me was the fact I verbally agreed to do week on week off with my parents and both of them signed. Although it was not court officiated it was used against me that first round. We couldn’t even take the case past the lower judge since my lawyer royally screwed us over. So at the end of this I was forced to see my father as I was before and if I didn’t they would hold my mother in contempt of court.

But to my surprise my father didn’t want me. He of course didn’t say it in front of a judge because if he said that then the all mighty dollar would come back into play. By stating he didn’t want me he would be forced to pay child support. I couldn’t stand to be around him. And worst of all he was trying to make it seem like nothing happened, that I was overreacting to the entire situation. I would be lectured over and over. The family outing tripled. The car rides were excruciating. I had nowhere to hide. I was trapped and that was that. If I didn’t do everything he wanted I was psychologically messed with. The family friend would make comments about me to my face, then trade off to my father who would mock anything I do. The two openly discussed how horrible my mother was and that I was just like her. It was never ending. Then on top of that my father was pushing me further and further into the school nightmare. He would watch every homework assignment I had to complete. If I didn’t complete it to his likings well I better do it again, and again, and again. There was no asking for help. I did it right the first time or I was a failure. This was drilled into me until I broke down inside and knew I was a failure who would never be smart enough.

When I went to my mother for a second time I asked her if we could pursue the custody issue again but this time with a different lawyer. This time we won, we pursued the abuse issue and the courts dissolved the matter of me going there every week. My mother and him discussed on the phone how I would come over on weekends like before, and no fight was to be had. Those weekends were painful. Those weekends I shut off, I couldn’t stand to be in that house. I eventually stopped going because my father’s rage was clearly building again, and if he exploded in front of me again I just don’t know what he would have done. When my mother went to the court to have child support put back into place my father lost it. He was threatening my mother in front of two lawyers and a judge. Even his lawyer screamed at him to shut up but with no success. The last time I saw my father was that last day in court. He sat next to us waiting to be seen and tried to talk to me like it was any other day. He was unapologetic. He still thought I was making everything up. He truly believed my mother was the one doing all of this and that I was just following her lead. He had no idea what he had done and what he was doing.

I haven’t actually had any contact with my father since then, he had contacted me on three occasions and that was when he was about to go to jail for not paying child support. Every single time the bill was due he wouldn’t pay and when I turned 18 he just stopped paying all together even though in his marriage contract he signed to pay support until I was 23 no questions asked. He is currently 9k in arrears. For years after the last battle he would claim he was disabled and completely broke so that the court would pity him. He would show up with no shoes on and a walker, saying that his health is so horrible and he hasn’t been able to afford shoes in 20 years. He would fake a variety of ailments all to get his cost lowered. He would show up on purpose without any paperwork that the court ordered. The same man with a record collection worth over 100k. The same man with two cars. The same man that collects artwork from around the country. The same man that travels around the country for leisure. By the end of it all he was paying less than $200 a month for me. And even that was so much for him. For his own child with medical problems I was worth $200, and even then not even worth that much because he didn’t pay that money. The realization came to me years down the line that my father put on a charade just to get out of paying child support, but the game he was playing was my life and to him I was just a puppet.

He was vindictive. A year after contact was shut off he went into my college fund and withdrew 10k, the entire amount he had saved for me while I was living at his house. Because of the plan we had that 10k would be so taxed that you were lucky if you got back 1k. It was a slap in the face. Even without him in my life he would torment me. He called me on two occasions before court appearances saying he was on his “way out” and that we should “hug one last time”. His reason behind his so called death, a minor blood clot in his leg that was so minute not even the doctors would write him a note for the courts. He called again saying practically the same thing, just a different excuse.

And when I cut off my father I also cut off that entire side of the family. They knew how my father was, they saw what he would do and how he behaved. But I lost them too. A grandmother, an aunt, two uncle, and two cousins never to be heard from again. They could have reached out to me, and honestly I could have reached out to them but we didn’t.

The life with him as my father left me scarred, left me emotionally broken and in therapy for years but I regret none of it. What I did that day was something I needed to do on my own. It was the first time in my life I made a decision by myself for my own wellbeing. There are still days where I look back and question everything that happened, questioned if I did the right thing. But every time, even if it takes weeks to come to this conclusion, I realize that I did do the right thing. Someone who takes you for granted and abuses your trust, mental wellbeing, physical wellbeing and uses you as an object has no business being in your life. When I tell people my story I always get the “daddy issues” label and it boggles my mind. I think at the end of the day people need to dig deeper into who is in their lives and even if it their own flesh and blood realize that it is not okay to be abused.

It takes real courage and strength to exile an entire side of the family. It will haunt you forever. The emotions that come with doing this will cause all sorts of conflictions in your thoughts. My mind always creates scenarios where my father is a decent human being, where he isn’t the man that shaped who I was for the longest time. I have created my own defense mechanism where I just block out the painful barrenmemories. When I go to search for them they are no longer there. My mind becomes a wasteland and with that comes peace. I try my hardest to rid my mind completely of him, but what he did left battle scars that will never heal.

Innocence Removed

This is a continuation of my journey with my father, read part one or part two.

What happens when good intentions cause immense suffering and betrayal? What happens when you are protecting your loved ones and yet causing battle scars that last forever?

The warning signs were all around me, the red flags signaling at every turn. Who was my father really and what have I gotten myself into? At my mother’s house I saw actions that were the norm, drinking alcohol at nights, prescription medication for the variety of medical issues everyone suffered, and regular arguments between family members. When translated my father’s house was no different. But when critical information was withheld I didn’t realize what was happened was the beginning of something much worse.

To protect her daughter my mother never told me my father was an alcoholic and drug abuser. She never told me of his anger issues, never told me of marriage from hell, never told me of the abuse my father inflicted upon other women in his life. I was none the wiser to his actions. I never thought to tell my mother of any red flags because things seemed similar. When a child sees one parent doing an action if the other repeats then why would that cause alarm?

I was already uncomfortable staying at my fathers and knew if I said anything the consequences would spiral out of control. I was already losing control of myself and my life, I couldn’t stand to lose even more. Staying at my father’s house as a recently puberty ridden young woman was tough. My body was changing and the support given to me was just uncomfortable. At school I was being sexually harassed. I was a late bloomer in my physical appearance which caused a group of older boys at my school to harass me. They would follow me around, comment on my Wickedmosquito bites, make remarks that I must clearly be a boy, talk about actions similar to rape in regards to me, and call my home phone until we were forced to unplug the cord. Day in and day out the remarks were shouted at me, isolating me even further from my peers. The stares others would give me made me feel so alone. The backlash I projected alarmed even more of my peers. The harassment was making me the weird one. When I sought comfort with my father his responses were awkward. He would reply with “I always found small boobs on women attractive”, as if that was to comfort me. I confided in him before my mother, and with the awkward response I never told my mother in fear her response would be similar. It was not until the day they called my mother’s house phone literally all day right after the other that my mother went straight to their parents. She had no idea what was going on and when reported to the school it stopped. Legal action was threatened finally on my mother’s part before the sexual harassment completely stopped.

I stopped going to my father after this for any help on how I was feeling. The tension at his house was already growing. The former family friend with the beach house moved in and acted much as a second mother towards me. As the migraines progressed so did the harassment at his house. When I had a migraine one of them would burst in and make a comment. At his house my room did not have a locked door and he refused to put one on. There was no knocking, no simple voice spoken to make me aware someone was coming in. Just the burst and my door wide open. On many occasions I would be changing and there I was out in the open for either to see. On days I had a migraine I laid in bed hoping no one would come in, usually without success. Someone always felt the need to say suck it up or get up you’re faking it. Soon the comments turned to anger and I would be screamed at while in bed with a migraine. I hated it there. No one believed I was in pain, and no one believed anything I said.

The fact was that no one at that house was taking care of me. At first the transition was successful and privacy was respected, meals provided, a caring and comforting environment for me to grow up in. In a matter of just months that all left. Where there was once family dinners now laid empty tables and empty fridges. If I was hungry I would scrounge for anything in the house, soon I was strictly eating the dollar noodles. My father, preparing for cycling, would starve himself and with that starved me. In the fridge lay a pack of carrots and alcohol. If you were hungry you would snack on the carrots, which at the time I hated. When I brought this up to my mother she would give me money to go to the local store for food and continuously yell at my father for not cooking. He tried on and off, he tried to be there for me but the effort was fading. Grilled cheese became a regular item for me and when food was cooked that I didn’t like a fight would breakout. I would apparently throw my nose up and disrespect what was put in front of me. When I was excused from the table someone would follow me upstairs and yell at me. You might blame this on me being a picky child but what once was little a scolding were turning into fights that made you fear for what would happen next.

The red flags were surfacing at even a faster pace now. On multiple occasions my father would walk to the bathroom naked, which you must understand my room was right outside the bathroom and the hallway was not long. Every time he would act shocked that I was there, but how could you not know I was there with my door open? The comments were being made left and right about my weight. “You can’t eat that, it will go straight to your thighs”, “Once you turn 13 its all downhill, eat what you can now”, “Skipping a meal might be good for you”. The lack of approval was also fading. Nothing I ever did was good enough for my father. I excelled in school despite my constant absence. When I came to him and told him about my success I was told it was not good enough and to do better. If I had an A I should have an A+. If I wasn’t perfect I was failing. This created this gap in my brain that fostered and grew into something I still deal with today. This constant reminder that I am not good enough, between my appearance and my performance.

I was putting up more walls, creating more barriers between me and other people. The little friends I did have were fading. When I was allowed to go out I hung out with the bad crowd, I was a bystander to my own life. I was there with a group of people who accepted me coming from their own troubled home life. I was always asked by my teachers why I hung out with “those” kids, that I was better. I didn’t know I was better, in my mind I was worthless. Who cared if I was a straight A student hanging out with the middle school drug addicts, at least they seemed to care about me. When high school rolled around most of the people I hung out with went to the tech school or they were forced into private schooling leaving me friendless. The friends that did transition to high school with me ended up abandoning me for being weird. Even the troubled kids thought I below them.

Eventually I was accepted into the nobody crowd, those kids that didn’t fit into any sort of clique. Even though I was accepted it didn’t mean I would be welcomed. I was still an outsider even amongst them.

As middle school came to a close and my high school journey began a new phase in my life started. But even by now the once innocence I had was torn away and replaced with a growing fear and regret for past choices.

Loss of Blood Ties

The next part of my journey is quite a lengthy few years. At this point in time we introduce a pivotal character, my father. The stories are deep and very emotionally rooted. From a length perspective these are sure to be the longest portions thus far and because of this I am going to break it into parts.

From the getgo my father was a sly cunning fox who could sell ice to the Eskimos. He came from a religious family, his father being an Episcopalian minister. From the stories I’ve heard from both him and other family members his upbringing was a troubled one. By the time he met my mother she was desperate to get out of her own situation and married practically right away. He offered an escape for her and at the first chance she took it. My father was expected to be successful and in his own mind he was destined to be a man to be remembered. My mother worked full time to pay for his college degree at of all schools, Wharton (which is Ivy League level business). Coming out with a business degree he was expected to make millions, be a CFO of a company, anything successful. Instead his own mindset got to him. He quit his new job and decided to be an entrepreneur. From here on out the story fades, not much has been told to me. What exactly happened next is unknown to me.

The pieces I do know were of a troubled marriage spiraling out of control. My father was an alcoholic drug addict with an abusive temper, which wasn’t aided by the fact my mother also had a flaring temper herself. On a number of occasions I listened to stories where my mother had an outburst and was silenced only by the physical abuse of my father. By the time I was 2 years old my father had turned into such a monster that even my mother who knew she would be left out in the cold with a toddler decided to run. The night she knew it had to end was when my father was coming home from a business trip. He was so drugged out that he crashed his car into multiple neighbors parked cars and stumbled on home practically drooling on himself as he went. Seeing all of this happen my mother decided it was time, the unstable nature of my father was now in the public eye with a toddler close by. And the fuzziness begins again, the story falls short and the details are left blank.

If we speed up in time to when I was in kindergarten my end of the story can really fall into place. My entire life my mother and father were fighting each other, both for the approval and award as best parent. My mother being an actual good parent who cared about her child was always there to pick up the pieces. On her own as a single parent she was able to work and take care of me, providing me with the best childhood possible. My father on the other hand who only had me for weekends was trying to boast his fatherly skills. As a young child this consisted of child friendly trips such as the zoo or playground adventures. What I saw of my father was fun time dad, not anything of what he truly was.

The prime example of this was my kindergarten graduation. Since I went to a private kindergarten we had a special ceremony that congratulated us on our little achievements (which is seriously ridiculous). My mother was ecstatic, until my father showed up. I remember graduating, walking and standing for pictures then being given a bag of gummy bears. After that I was in a car being driven away frustrated that I couldn’t open the bag, which I eventually tore open and lost half of my prize. But it wasn’t my mother who was driving, it was a family friend. What was happening to cause this? Apparently a fight broke out between my mother and father which resulted in my father physically assaulting my mother in front of all the other parents and children. The cops were called and charges filed, all while I was being escorted away to hide the true side of my father.

So why after all of this would my mother allow me to see him? Why did the court allow him visitation? The simple answer was the abuse wasn’t affecting me and my mother truly wanted her daughter to have a father in her life no matter how horrible he was. She tried her hardest to make my father something he just wasn’t. No matter how hard he tried at the end of the day he was scum. He had cleaned up his act, got anger management, and by all means looked to be a decent father. Behind the scenes he was constantly fighting over paying child support, always lying to the court, and sabotaging everything my mother had worked for.

It was a tricky situation for anyone to be in, how could a parent tell her child no? How could one parent keep the child from the other? And how do you even start to tell your child the truth?

Odd One Out

This is a continuous of my life story, read part one here.

For two years of my life my childhood was back to normal. I had nothing to worry about, not a care in the world. In 5th grade the big achievement trip was a trip to Disney for a school science program. Being a little kid of course I want to go, who wouldn’t? And even at the age of 10 I was fascinated by the idea of science and all the mysteries it holds. So for the entire year I fund-raised going door to door with my mother trying to sell Yankee candles. By the end of the school year I had hit my goal fundraising wise (I didn’t know at the time I had hardly raised any money so my mom just put the rest of her funds together by herself). This trip would be the first time I had left home for an extended period of time all by myself. Of course I was with classmates but I didn’t have my mother by my side.

To end the trip everyone went to Epcot, which I was super stoked for because it had so many cool new countries to explore and the opportunity to go to Animal Kingdom. Side note: as a young child pretty much all I watched was the discovery channel. I was animal obsessed. My group and I went around to each country and went to the gift shops looking at all the “foreign” goods. Finally it was time to eat lunch and my group decided it would be fun to eat in “Japan”. Shortly after eating we headed over to the gift shop when it hit me. The sun was brighter than it should be. The noise around me was too much. The minor pain in my head was spreading and soon it felt like someone was jackhammering my skull.

Like any young child in extreme agony I started to cry. But it wasn’t a tantrum cry, or a screaming cry, just tears flowing down my face type cry. I couldn’t stop. The pain was too great. My fellow classmates looked at me like I was some sort of weirdo. Why on earth was I crying?

Everyone walked away except the chaperone who tried to calm me down. He was a sweet patient man who was parents of one of my group members. After crying for about twenty minutes he decided it was best to call my mother. She was hysterical on the phone. Here IOdd One Out am in Florida and my mother back at home in Pennsylvania. She was border line about to fly down and take me home. In fact I was told if I can’t stop crying I would be sent home. I really hope that was a blank threat and not actually something they do because how messed up would that be if you sent a little kid home by herself.

It was interesting having Epcot medics come and take me away. I had my eyes closed the entire time while the cart drove through restricted areas. The medics gave me some Motrin and had me sleep for the rest of the day while my group was out experiencing Epcot. This was the first time I really felt alone. After returning to the group everyone looked at me differently. The snotty remarks were whispered behind my back. I was the weird kid who cried. But how could I explain what my head felt like? How could I describe that level of pain? I was only 10 years old after all.

A few days later we all flew home and a new chapter began in my life, the chapter of migraines. Returning home I was having the excruciating pains almost every day. My mother was frantically searching for pediatric neurologists that had openings sooner than 6 months away. We eventually found a few openings all around our area and the waiting game began. To be honest I don’t remember the early stages of my diagnosis. I must have gone to 12 or so neurologists in a period of 6 months. Each doctor was different. Each doctor wanted to tell me some theory on why I was getting them. Oh it’s your diet. Oh it’s just hormones. Oh it’s the environment. But even after eliminating trigger after trigger we were left empty handed. There was no rhyme or reason to why I was getting these migraines.

The amount of school I was missing was also becoming a problem. The school and my mother had plenty of meetings to discuss my absences and make sure there was no abuse going on at home to cause me this pain. Then we found a neurologist that was willing to work with us regarding preventative medication for my migraines. At the time not much was approved for children under 18. The doctor was almost an hour away and he suggested plenty of preventatives. The only downside was the effects they could give me. One option I had required me to get my liver tested every few weeks or the other that would make me lose weight. We decided it was best to go with the weight option.

The other bonus this neurologist provided was the in-office IV treatment, which of course I wasn’t thrilled with being extremely needle-phobic. This was about the only option for when my migraines were off the charts and any abortives I was trying failed. I must have tried every abortive available at that time and the only one that seemed to do anything was Imetrex (still to this day). The office was also able to run an IV drip of that form of Imetrex, which even though an hour away I went to frequently. The migraines at the time were never under control, they came when they wanted to and typically only went away if I went for the IV treatment. The once needle-phobic innocent child was slowly being ripped away piece by piece, treatment by treatment. But what could one do when you have no choice?

Where It All Began

Taking you back to the start requires a bit of thinking and remembering, some of which might be hard to remember. But even with this I will try to tell you the whole story from start to finish.

I was born July 12, a month earlier than I was supposed to. My mother had gone into labor unknowingly and by the time she had realized it was too late. She was forced to deliver me without any medication to ease her pain, and worst of all I was stuck inside of her. My shoulder was stuck on her pelvis and I had to be delivered via forceps. The pain she went through was something unbelievable and something I will always appreciate. I was born a healthy weight with only a mild case of jaundice. My mother on the other hand was having complications. Although we both went home a few days later my mother had collapsed and was rushed to the hospital. She had a fever borderline brain damage levels and the doctors had no idea what was going on. Her kidneys were failing and all the antibiotics they could think of were doing nothing. She was deteriorating quickly, and only by a luck chance did a nurse whisper a doctor’s name she might try to ask for. In her delirious state she kept saying the doctorsTwo Blooms name until finally he came. He was a doctor of infectious disease and almost immediately he was able to treat her. The cause of the infection, contaminated environment.

So why am I telling you this? Why does this matter? Well for one my entire story revolves around my mother and everything she has done for me. Without her I would be nothing. She is my number one supporter and would do literally anything for me. As for why exactly this all matters, well later on this is the basis for a fair amount of my misdiagnosis.

Growing up I had a generally typical American household life. My parents were divorced so I was with my father every other weekend. The rest of the time I was with my mother and after a while my so called step-dad though they never were remarried. We lived in the suburbs and had a typical lower-middle class life. My mother worked a full time job and focused on her only child, me. Coming from her own abusive childhood her parenting techniques were a bit from the norm. She did everything the opposite of what her family did and in the end created a very independent little girl.

Things started to swing south when I was just starting 3rd grade, making me only 8 years old. I had caught the nastiest flu possible which I then passed on to my mother (which she says is the 2nd time in her life she thought she was going to die, the first being the after birth experience). Good to know I have constantly tried to off my mother. After everyone recovered I was left with a nasty stomach ache. I couldn’t eat, I was in constant pain, my bowels were all sorts of messed up, and the pain all along my throat would rage day in and day out. No one could figure out what was wrong with me. Soon the pediatrician recommended I go to the hospital, and off my mother and I went. It was a fun 16 hour trip filled with no answers, also my first hospital visit since I was born.

I don’t remember much about this visit but what I do remember is all the horrible things my 8 year old brain were thinking. The first task I was given was to drink two gallons of this chalk like substance to make my intestines glow in the dark. Fun right? I was young and I was not having it. I hardly drank any of it, in fact there was a sink in my room and my step-dad dumped most of it out when no one was looking. Then came the needles. As a young girl I was extremely needle-phobic. The mere utter of the word would throw me into a panic. And here I was about to get an IV (if you haven’t had an IV, it’s a needle like tube that stays in your arm so they can administer medication and fluids if needed). Next came the CAT scans and ultra sounds. Every test the ER could think to run, still coming up short with answers. After 16 hours and all the results coming up negative for life threatening conditions I was sent home.

The months following I was treated like a guinea pig, test after test, doctor after doctor. Until one day the 5 month waiting list was up and I could finally go to the children’s hospital. The first visit wasn’t exactly lovely. The nurse couldn’t find a vein to draw blood, and needle-phobic self was in full meltdown mode. It also wasn’t helping the nurse was giving me attitude to shut up. Then to the actual doctor, first step fingers up my rear apparently checking for damage. The amount of trauma my 8 year old self was going through today was enough to last a life time. Only two visits later was the minor tale of severe acid reflux diagnosed. Because it was left untreated for so long my esophagus was literally burning away. The doctor told us acid reflux is fairly common in children and slapped me on Prilosec which had me feeling better in a matter of weeks.

Then for the next two years my life was back to normal and I could go back to being a normal little kid.