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.


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?

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.