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.

Advertisements

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.

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.

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?