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.

Seeing is Believing

For something to truly work you have to believe in it first.

When the treatment for my POTS was failing miserably with just medication it was time to look at a more nontraditional treatment. My cardiologist recommended I go to a cranial osteopath to see if he could find anything wrong that could be causing my symptoms. When I say cranial osteopath you probably have no idea what I’m talking about, but a cranial osteopath studies the anatomy and physiology of the cranium and its inter-relationship with the body as a whole. In layman’s terms it is a certified OD who moves your skull around and changes the pressure going to and from your head. The complexity is truly amazing and when people are at an advantage to benefit the outcomes can be spectacular.

The first trip I was skeptical. The office music was much like a spa, relaxing yet strange when listening closely enough. For treatment I would go back and lay down on the table and close my eyes, knees bent to align my spine. The doctor would just slightly touch my head and move his hands around applying the lightest pressure possible. I couldn’t even call it a head massage since the pressure is sometimes hard to even feel. Here I was a teenager with a doctor seemingly doing nothing, and to my astonishment I could immediately feel a difference. The treatment sessions lasted anywhere from 15 minutes to a whole hour, depending on what he found. It was odd after the first few trips, my brain felt like the blood was actually moving and I had just drank 6 cups of coffee, but the next 24 to 48 hours I could feel pretty messed up. It was a sign my body was responding to treatment.

Cranial osteopathy is something truly unique that I sincerely doubt most people have even heard of, but the benefits can be life changing. But like anything else if you don’t believe in it most likely it isn’t going to have such an impact right away. I was hopeless and willing to try anything, this allowed my mind to be free and ignore how strange this treatment was. On the website for cranial osteopathy it lists who might benefit from treatment, and it ranges from migraines to Downs syndrome to Autism and more. Within 5 months of treatment going every week to every 2 weeks I wasn’t bedridden anymore. Even though I was far from cured I was able to get up and actually walk downstairs unaided. It was a spectacular feeling having my independence return.

Sadly though there is always a catch. The doctor is one of a kind on the east coast, and is about an hour away. The real kicker, he doesn’t accept insurance. In my personal belief this is unethical, but in the medical world pretty much anything goes. He costs a pretty penny and luckily my mother was able to afford his rates, after all he was the only thing helping my POTS at the time. For years I went to him, in fact I am still going today, and after a time it was found that my skull was pushed inward causing a majority of my symptoms. The treatment showed that my body was compensating for the massive hit I suffered to the front part of my skull. Still to this day it is unknown how that happened, but in my personal opinion it was from the forceps birth. On visits where he “popped” my skull back into place I did have violent reactions, typically the next day I would be throwing up uncontrollably. Now when I say popped I don’t literally mean popped. The skull stayed in place but the joints in-between each part was shifted. There is no pain involved, just usually a strange sensation felt afterwards.

Throughout my ordeal with POTS I have always told people of this doctor, and time after time people give me this strange crazy look like I was being ripped off. The fact of the matter is nontraditional methods are still frowned upon in the medical world and most non-medical people view it as a scam. Sure, scams out there do exist but he is a trained licensed professional doing his jbelievingob, which also so happens to be a little out there. My advice for people seeking any type of treatment that is not the norm is always do your research. In my case it was in the medical field, just not very recognized amongst other doctors, but in other cases it is supplements or herbal remedies. Just always do your research and if anything is seeming uncomfortable or not right then trust your gut. I looked at this situation with open eyes and the outcome made my quality of life go from nothing to something.

After years of treatment and ongoing medical care from my cardiologist I had plateaued and my symptoms seemed to stay at a manageable level. I finished my high school career at home and was able to graduate on time and with my peers. I never saw myself graduating on time since I had been in bed for half of my high school career, yet there I was walking down the aisle holding my diploma. The next step was going to college, it wasn’t a choice in my mind. I had applied and accepted to a local university within driving distance. I felt accomplished and I felt ready to conquer the world. I could leave high school behind and start my new life as a college freshman. With my symptoms finally under control I was able to get back as a player in my own life.

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.


Labels. They’re slapped on you and when they stick they are the hardest to remove.

After the whole fiasco with my father was over my health started to truly deteriorate. One might say it was the after effects of stress during that time period, but it was persistent and it was getting worse on a daily basis. For years I had dealt with debilitating chronic migraines and on again off again acid reflux, but now more symptoms were getting thrown into the mix. It was my junior year of high school and every day I would end up in the nurses office. I was so tired, I couldn’t think, I was sweating terribly yet cold to the touch. I had gone out of state to a different children’s hospital to go through a tilt table test. The results were not in my favor.

For as long as I could remember I would have to hold onto something upon changing positions, such as from sitting to standing, or lying to sitting. I would say my “eyes were changing” meaning my vision literally turned to black and could stay that way for a few minutes. I was told I had low pressure after a round of preventative migraine medications when I passed out in the kitchen on Memorial Day. From that day forward we also had to mention to doctors of my low blood pressure situation. With a desperate mother researching away we both decided I might benefit from a tilt table test to see if blood pressure medication might help alleviate my symptoms. The procedure seemed harmless so I decided to make that decision and go forward with it.

Arriving at the children’s hospital was horrifying. The ward I was going to was mixed in with the cancer patients, and the constant sobbing of parents filled the hallways. In the procedure room I was hooked up to an IV and strapped to a table. The first test had me just lying down, then mechanically moved to standing. Nothing happened. My heart rate and blood pressure changed drastically but I did not pass out. The next test they injected an agent to make my heart race “like I was running”. The wording sounded harmless, but the actual agent felt like my heart was going to explode. I lay on the table, my heart beating a million miles a minute, my mother practically screaming to make it stop and turning away when they wouldn’t. I was thrust into the standing position, yet again keeping consciousness. Then the test was over. I had failed. Because of this test I was told I was fine and to improve my condition I should drink plenty of Gatorade and eat tons of salt, a diagnosis plenty of patients initially go through with this condition.

It was rather insulting, to be told to my face that I am perfectly healthy, to be told salt will fix my chronic fatigue. So I returned to school, struggling each and every day. The absences were growing and the school nurse was beginning to suggest things I might have. One day she thought maybe I might have this condition called POTS. My mother and I looked at each other like what in the world was she talking about, but then went home and researched the syndrome. POTS, Postural Orthostatic Tachycardia Syndrome, with a list of symptoms that I checked yes to every single one. The problem was POTS at this time was fairly new and doctors were hard to come by that treated specifically that. By lucks chance my mother called a doctor only 30 minutes away that would see me the next day, though not a POTS trained specialist. The next day I arrived and was diagnosed with POTS. I went for blood work to reveal my ferritin levels and that sealed my fate. The POTS label was slapped upon me.

The symptoms were getting worse and new symptoms arising. It was like walking a hallway, knowing there was an end but none currently in sight. The doors were endless. A symptom here, a symptom there. By winter break it was decided that I should be pulled from school and instead homeschooled. Instead of completely being homeschool the school provided that my actual instructors come to my house for a set amount of time each wehallwaysek. In a sense I was distance learning.

My growing number of symptoms was so vast and complicated that at times I stumped the doctor. The first issue to address was my blood pressure. It was incredibly low, and standard to POTS sufferers would go through severe drops when changing positions. Unlike some POTS patients though I never did pass out, but the severely low blood pressure might have been causing my other symptoms of chronic fatigue and brain fog. I was put on two medications, midodrine and fludrocortisone (which was a steroid). Together these were to keep my blood pressure at a certain level, which they did after months of taking them. The sides effects I had from both medications added to my daily woes. My head would go numb and tingle, which freaked my mother out but I told her I can handle it.

At the time the prognosis was slim but at least someone had figured out what was finally wrong with me. Even though I had this label it was still something compared to nothing. The hallway might have been long but it now had an end, so I was told. I was hopeful even though my condition was worsening.

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.

Strangers To Enemies

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

By the time I was entering middle school and diagnosed with migraines officially the home life started to get a bit rocky. The summer of 6th grade everything changed. I was with my father for an extended amount of time and he decided to go down the Jersey shore with me. A family friend, sometimes girlfriend, sometimes not had a bungalow down the shore. It was quaint and just a few blocks from the beach. I loved going down there to roam the town on my own, even though I was only 11 I was given the freedom to do as I please. Times down the shore were exciting with my father, he would often just give me quarters to go to the arcade by myself or plan exciting day trips as a group. I hardly knew my father even at this age, all he was to me was someone who wanted to have fun. The times we spent together were not spent in conversation but in activities. I had no obligation to talk to my father if all he wanted was my company. If he wasn’t talking to me then of course I wasn’t striking up a conversation. I was a shy child around strangers and my father was practically a stranger.

I remember on one of the last days at the beach my father was going to go out on a bike ride. At the time he was a competitive bicyclist, and a pretty good one at that. I remember having these butterflies in my stomach before he left. I even went to him and told him to stay home and not go out on the ride. He went anyways. Hours upon hours go by and we get a call from the hospital. My father had crashed and was at the local emergency ward. I remember arriving and being escorted back to the room where I saw him lying in excruciating pain on the stretcher. Apparently as he was riding he pulled off into an empty lot but didn’t see the lip from the road on to the pavement. He came crashing down smashing his entire pelvis. The hospital quickly figured out the shattered pelvis but took hours until they figured out the broken collar bone. My father was smashed into pieces and was helpless.

It was an odd summer. I was over my father’s house often because I felt some obligation to take care of him. He needed help moving and couldn’t really use his legs. Plus I wasn’t in school so what else would I do? It was also not far from my fathers rented house to my mother’s house, only about 10 minutes away. By the time summer was coming to a close my mother and I were not getting along, at the time I didn’t realize it was probably because I was over my father’s house far more than she wanted. My father seeing an opportunity decided to bribe me. For being such a good daughter over the summer he was going to buy me a new desktop and my very own laptop! The catch was that I had to agree to stay every other week at his house. I was thrilled! Fun time dad every other week?! I mean how could I pass that up! Especially since I was having a bad time at my mothers.

Instead of going to the courts to get it officially changed the group decided on just a written agreement. The main factor was that no child support would be paid to my mother since I would be half and half now. But my father had to start putting away savings for my college. It seemed fine to me, I was just happy to have all this new technology. So for the start of my 7th grade I was split between the houses. Things for fine for a while until my migraines started to come back in force. When I had a migraine at my mother’s I was cared for. When I had a migraine at my fathers I was being dramatic and should suck it up.

In 7th grade I also officially became a woman, which brought a whole new fun set of issues to deal with. The major issue, menstrual migraines. The nastiest, most brutal pain I could even imagine. And every month like clockwork I would get them. The worst part was the neurologist providing treatment could no longer help me. I ended up in the ER on multiple occasions just to get a cocktail of Toradol, Benadryl, and Zofran. Whatever the case this seemed to always rid me of my unbearable migraines.

I was always miserable whenever that time came when I was at my fathers. I was scared what would happen. There would be no way he would take me to the hospital if something were to happen. Soon my neurologist recommended that I see a gynecologist and be put on birth control. This way I could at least go 3 months without a hospital visit. For those who don’t know the pill form of contraception can be taken consecutively for 3 months then a week off, and it is not just used for birth control. In fact the pill can be used to help alleviate a variety of medical issues. In my case medical migraines. After this I started planning tTrappedhat time around the weeks I was with my mother. I couldn’t bare the thought of having to be at my fathers while that was happening. Soon things were starting to look in my father’s mind that I was only sick at my mothers. He started issues with my mother, threatening a custody battle until he decided that I clearly need therapy. So at 12 years old I was dragged to a therapist to work out my problems. I was told I was going to build a better relationship with my father, little did I know there was another agenda.

I was regretting my choice to change my living situation only a few months in and I knew if I changed my mind now it would only cause more drama. Therapy was practically a disaster, it was awkward and beyond uncomfortable when my father was brought in. I didn’t truly understand why I was there. I thought I was doing something wrong, that my actions at some point had led me into this situation. Therapy sessions ended with awkward hand offs from mother to father and vice versa. I was feeling so alienated between the home life and the medical situation. I felt like no one could understand what was happening to me.

As life around me was spiraling out of control so did my appearance. I wore nothing but black, talked to no one, and confided in only a single friend. Some say it was just a phase, that every child goes through their phases. But what was a phase and what was a desperate cry for help?

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?

The Journey

The Start:

Ever since I could remember I was sick in some way shape or form. It all started when I was in 3rd grade and only progressed from there. Every few years a new diagnosis was given and the list grew on the thousands of reasons wrong with me. Because of that I have always identified myself as disabled, someone who is living with chronic illnesses that impairs their quality of life. The term has many different interpretations depending on who you are asking, but that is what it means to me. Life was a struggle day in and day out. You never knew what the day would bring or what drama would occur because of your illnesses. Surprises rested around every corner, and typically not good ones.

On top of the many medical conditions I was struggling with I was also dealing with an abusive household. When I was 2 years old my mother divorced my father, and it was for all the right reasons. Drugs, abuse, alcoholism, you name it and that was my father. The marriage was toxic and my mom needed a way out for her and her new child. For the longest time my father had every other weekend visitation, but that all changed when I was 12 and everything went downhill. My father was in a bicycling accident and broke his pelvis, and collarbone. I was young and he bribed me, and at the end of the day I thought why not spend every other week here. And so the abuse began.

By the time I was 16 I had been to court two times and dealing with domestic relations for years. Finally after the last court appearance I was out of being forced to go over to my father’s house. In fact that was the last time I ever spoke to or saw my father. 6 months later I was completely bedridden with a new mystery illness that forced me to be home schooled. The short and sweet diagnosis of POTS was slapped on me and I carried about my life as a weak fatigued girl.

The years from then until now have shaped me tremendously. When I entered college I haUpward and Outd no idea what to expect. After struggling with my mother through her cancer diagnosis, and my step-dad leaving us midway through treatment I was shaken. I was in a long term relationship that was falling apart all around me. And here I was trying to start over at a new school working towards a degree. Once my ex of 5 years left me because I found out he had been cheating on me the entire summer I was nothing. I did not know who I was, what I was, what I was doing. I was lost.

The Present:

Now speed up to the present: for once in my life I feel whole, I am healing. This year brought second opinions and new diagnosis which have changed my life dramatically. The ongoing struggle seems to be connected. All the symptoms have been brought together. I have started doing things I love again, thrifting, going out on photography trips, even caring about my appearance. These are slow steps, but they are steps in the right direction. Next semester (Fall 2015) I will be student teaching and graduating college. The man in my life now is the support I need. And the direction I’m headed is where I was supposed to end up all along.Through all the pain and struggle I have come out the other end knowing who I truly am, knowing what I want, and how I will get it.

How things stand right now I am dealing with a re-diagnosis of POTS, a new diagnosis of fibromyalgia, on-going chronic migraines, on-going and unresolved stomach issues (gastroparesis mainly) plus all the other weird symptoms that don’t really fall into a diagnosis. On a daily basis I typically feel horrible but I know things are on the upswing. I know if I keep on pushing I have almost reached the end goal, a life of true happiness that I have made for myself.

The Future:

So you might be asking why am I here? Why am I sharing all of this with you? And the plain and simple reason is because I know by sharing others can feel comfort. Each person has a story, some which want to be told and others that don’t. But at the end of the day it is inside of you and by sharing what you have battled through others can find comfort in knowing they too know the feeling. In this blog I plan on sharing the entire story and every battle I have won. Even in the way future when the war is won my stories will be told because in every story lies hope. I want to share with you, my readers, the everyday struggles I go t301hrough but also the days where I do something I never thought possible. Sharing the highs and the lows, and letting everyone know that there is always a light at the end of the tunnel.

Along with stories of my past I also want to share what I love to do and give advice to anyone who needs it. Photography has gotten me through a lot of my dark places and I plan on sharing as much as my work as my readers can stand. I am a beyond novice but it is a love that fuels me on days where the pain is too much. I would also love to share my other love of fashion. Since at heart I am extremely frugal I of course love to thrift and think that others might like a tip or two about how I achieve my look. On days when you aren’t feeling so good about yourself, a fun silly day of thrifting might cheer you up. In the past it has for me, so why not share it with my readers!

And on a final note I want this blog to be a space for people to share their own stories and feel safe doing so. I would love for this blog to turn into a community space where people can come to for support, a laugh, some thought provoking questions about saving a dollar, to vent, or whatever anyone needs to get through their current battle. In the end we are all warriors looking to get by.

So here my blog journey begins, feel free to comment or email me at familiarfragments@gmail.com. I hope you enjoy.