Because You Are a Liar and a Cheat.

He was gone. Out of the house, and with hope out of our lives. But my mother knew all too well that he would be back, and when he came back he wanted the house.

For a few weeks my step-dad was gone, completely out of contact with anyone. He had told my mother he was leaving, packed some things, and left. They had been together for 15 years and just like that he was gone.

I went on to graduate high school, on time might I add, which was a huge achievement. He had been with me throughout my journey whether he liked it or not, and when this beyond important date finally came he was not present. He had vanished just like that. One minute we were bonding over life and the next he had moved on. Deemed us no longer worthy to be in his life, just like that, with a snap of his fingers.

When he came back he forced my mother into a corner, either get out of the house or pay him what he owned. His name was on the title, making him the half owner of the house even though my mother first purchased the house and paid it on her own for 3 years. My mother, still going through cancer treatments, decided she would just pay him off. What choice did she have? She wasn’t going to let him take everything and get away with it.

He was stubborn. Not for a million years did he think she would settle, and he came at her with everything saying that he owned more than he did. He argued over the money for months. My mother had to take out a loan in order to pay him back, and days before the closing fee was due he backed out. He said he refused to pay his part, so to get rid of him my mother paid his fee. All of this just to stay in our house, the only house I have ever known. Why did he do this, oh for the money of course. Part of this property he owned, and with that came money, even if it was a trivial amount.

Later he came and took the rest of his things. His brother helped him move the stuff out, the brother that was closer to my mother than my step-dad. They took meaningless things, but it was still the act of coming into our house and removing items that I have grown up with. It was like I was reliving what I did years before with my father. I was losing memories, even if they were held in material items.

My mother stood stoic on the front lawn as they removed piece after piece. I followed them around the house to make sure they weren’t taking things they weren’t supposed to. After the truck was loaded up they were gone.

That was the last time I ever saw him or spoke to him.

So why did he do all of this? Why did he rip a family apart? His reasoning was because he was finding himself, that this journey he was going through did not include us. He was adopted as an infant and grew up with these feeling of abandonment, then he had two children it turns out he didn’t want and in turn practically abandoned. These feelings are what he blamed for leaving. He added that he couldn’t handle our medical problems, that it was just too hard for him. So he left.

My mother did more for that man than he ever deserved. He never opened up to her except in the end when he was looking for a scapegoat. My mother raised his children, fought battle after battle for him to have better custody, told him what to say to have a real bond with his children, paid for everything and anything all on her own even though she too was sick and struggling. She did all of that for him, so that he could have a good relationship with them. Well it turns out they were both mistakes that he never wanted.

My mother’s last name revolves around Valentine’s day and she was born only 3 days after the holiday, so pretty much Valentine’s day was her day. In all 15 years he never once took her out or bought her a present. He viewed it as meaningless which meant he could care less. He viewed every holiday as meaningless. For Christmas my mother would go out and buy his children gifts so that they had something to open from their father. My mother did everything for him. In his weakest moments she was there to pick up the pieces. Well it turns out it was all for nothing.When the pressure was on him he couldn’t handle being a real man. He was a coward all along.

He was cheating. All along it was another woman. All the lies that came out of his mouth were to cover his own ass to make him feel better. Apparently saying that you’re leaving because you need to find yourself makes the guilt less than saying what is really going on. Apparently that makes it all okay.

The moment we knew was when he accidentally sent a check (which was so small that it didn’t make sense, years later we figured out it might have been him sending money for the closing fee?) with his address on it. An address we looked up, which was owned by a woman, a woman who went to the same yoga studio as him, a woman he had wrote about in his yoga journal. She was younger than him, had her own house, and was on this spiritual journey. Just like he “was”. She was living the lifestyle he wanted, and unknown to us they ended up together.

Both my mother and I drive by the house often since it is on a main road going to the local hub of the area. His ancient car sits in the driveway. The man that refused to buy anything found a new host to mooch off of. His charm is never ending and clearly she was as easily fooled as my mother.

liar

What he does is mooch off of people. He has this innate desire to save, save, save. For what? We will never know. At this point he would have close or over a million dollars. Yet he has nothing to his name. He has a car that is falling apart, no property to call his own, no relationship with his only family, and no interest in marriage or anything.. He essentially has nothing. But yet he must think he has everything. He gets to live in another house, pay nothing, live the lifestyle he wants, and pretty much get away with murder.

He left us. He abandoned us. A ran running away from his own turmoil with abandonment went and left his closest family. And he didn’t even care. He had a family that loved him and was working with him. Sure it needed some serious help but when something is worth it you never give up. And you never leave when he did with my mother still battling cancer and me struggling to get out of bed every day.

The day he removed his things was the last time we heard from him. He has never contacted my mother. Contacting me would be a joke, I wasn’t even on his radar to begin with. That was 4 years ago and I have no doubt for the rest of our lives we will never hear from him again.

And at the exact same time I don’t care. To me he is nothing more than a liar and a cheat.

Husk of a Man

When on the journey of finding oneself does ripping up others matter? Does the cost of your happiness mean more to you than all the others around you? Are you yourself doing what is actually right, or doing what you perceive as right?

I thought these things as he sat in front of me, no remorse in his face, no hint of pain in his eyes. He said he was leaving to find himself and he couldn’t find himself here. He said this is what he needed to do, and with that he walked out the door and walked out on a family that was left torn in half.

My mother met my step-dad when she was with my father very early on and they all became great friends. Eventually my godfather was introduced and the final gang was formed. Everyone got married and had kids, and still stayed together as a pack. They vacationed together and hung out together, and when it was finally time for my mother to leave my abusive father they stayed with her instead of him.

One after the other they all got divorced, and as fate saw it my mother ended up in a relationship with my step-dad. When my mother was able to she bought her first house and a few years later my step-dad moved in. I couldn’t be happier. He had two kids of his own my age and I grew up with them by my side. Of course he didn’t have custody so it was only on occasion I saw them, but during my summers off I bonded with them every moment I got. And I truly bonded to my step-dad since he was more of a father figure than my own dad. Together we formed this nontraditional family that just seemed to fit.

In the early years the two of them seemed so happy together. It seemed like it was meant to be, that my mother after all of this time could be in a happy healthy relationship. But it was far from what it turned out to be. Year after year my medical condition got worse, and with that brought problems. Then when I finally took my father to court it was the last straw. The home life turned for the worst and the fighting started to spiral out of control. My teenage years I spent in my room, away from the nights where punches were practically thrown. My mother with her temper and my step-dad with his below the belt punches. There was no stopping them. The screaming would go on for hours and even when it was over he would go back for more. Neither of them were happy, but my mother insisted he was the love of her life. He was meant to be with her, and she was meant to be with him.

Around the same time as my POTS diagnosis came the shocking news of my mother having breast cancer. I remember being in my room and they both come in, both with half smiles on their face. He leaned up against the wall and my mother sat next to me. She told me they had found a mass in her breast and it came back cancerous. I was in shock. How could this have happened to my mother? She explained that it was only stage 1 and that it did not spread, but it was one of the most aggressive forms of cancer and she needed further treatment. My mother being who she is opted for just the radiation therapy and biweekly injections of a substance that would shut down the proteins of those cells. They pushed for chemo but opinion after opinion said that she didn’t really need to get it since it was only stage 1 and did not spread. They did want to give her a port though, which she said no to because then she would have to tell people since you could see the port. Without the port though her veins would be ruined. She accepted this fate if it meant she could hide this diagnosis from the world. She was fighting for her life and the only people she told was my step-dad and me. No one else in the family was told for her own sake, since then everyone would want to help her. My mother is the strongest woman I know and she didn’t want to be pitied. Telling people would just make them look at her weak, as someone who is now fighting for her life. She wanted nothing to do with that.

After a botched tube was placed for her pinpoint radiation therapy she had to go back in for more surgery. Each time she would come home and my step-dad was in charge of helping her clean the open wound and helping support her. She was sliced and diced, and came home often with blood soaking through the bandages. She couldn’t come to me in her weakened state because in her eyes that was not right to show me, she had to be the caregiver, not the other way around. She never cried in front of me. She never broke down in front of me. The entire time I saw her as a fighter, which gave me strength to go on in my own fight.

On top of everything else my mother was going through she was forced to resign from work because of the recovery period. In her mind it was the right thing to do, since battling cancer and holding a job in corporate America isn’t exactly the easiest thing to do. Plus this gave her the time to watch after me since I was also extremely weak and vulnerable.

By the summer of my junior year of high school I saw less and less of my step-dad. I was told he was working late. He would roll in around 10pm and would be gone before I woke up in the morning. I always heard him come in since my window faces the driveway.

And for about a year he was sleeping in the spare, apparently due to snoring (which let me tell you he did. I heard him through the walls). Then it was because my mother didn’t want someone else in bed with her during the cancer treatment. Then it was just normal, they just didn’t sleep together. There was never any affection. It was a cold house of him just being there. It was either he was there and they fought or he wasn’t there and my mother would make excuses. That was now the norm.

As my senior year rolled around and I was homebound yet again he came to us with exciting news. He had started yoga classes and joined the local YMCA. I was a little shocked honestly. This man was 6’3, easily almost 300 lbs, not exactly the yoga type. But that is what he wanted to do, and to keep him happy my mother supported him. As months went on his training took a more serious tone and he turned into this man that none of us knew. This man we knew was turning crooked. He had branched out of what either of us knew. The status quo was being challenged and he broke away from what was expected of him. But this left uncovered a dead man who wanted nothing more to reblossom.

huskHis life was yoga. There was nothing else. He decided he wanted to be trained to be a yoga master and yet again my mother supported him. He would come home with all of this weird information, come home saying that yoga can cure anything, come home saying that yoga would cure my mother of cancer and cure me of all my illnesses. He was crazed with the idea of being reborn. He wanted to cleanse his body of all evil spirits and be new again.

He juiced like crazy, far more than recommended. He would fast for weeks in order to cleanse his body. Overall this large Italian man was turning into a husk of nothing. The light in his eyes was gone yet the smile on his face remained. The wrinkles grew along his thinning face. He was turning into a man that no one had ever seen before.

The longer he went on this now spiritual journey the farther away he drifted from both my mother and me, but the full abandonment was not far away and not either of us saw it coming.

The Demon That Is Sleep and Restless Leg

Since I could remember I’ve had sleep issues, so naturally the next progression of my medical journey would be to tackle the never ending cycle of no sleep.

A few weeks ago I finally had my appointment with a top sleep specialist in my area, and quite a bit was discussed. To start off the consult we discussed everything about my sleep habits and any issues I had. From what I could remember my sleep issues started when I hit puberty and since then it’s only gotten worse. My nights consist of routines in order to even fall asleep which include finding the proper amount of weight in the blanket combinations then being able to breathe in the cold air, and if the air isn’t cold then I need to make it, then on to my legs and feet which have always been a problem. About every night my legs have some sort of pain, whether it is a deep ache that spans my entire calves or sharp shooting pains that go into my feet. Regardless my legs and feet twitch, and some nights I even sleep with sneakers on so that my toes don’t bend backwards and spasm. Finding the right spot in order to keep my legs happy is always a challenge. Sometimes it keeps me up for hours or wakes me up periodically throughout the night. And I never wake up refreshed. I never actually feel like I slept at all.

When I actually reach the critical point of falling asleep is when I hit more trouble. Even when I was a small child I had vivid in depth nightmares which continued through my adolescents and into my adulthood. The nightmares typically do not have a reoccurring theme, but always play on my fears as nightmares would do. The main issue I have is not that they wake me up in a panic, which sometimes they do, but the fact I wake up and remember a majority of the dreams well into the day. Then to add to this I feel like I was actually living my dream the entire night so I wake up exhausted. Many times I wake up feeling like I had been running the entire night or have the bottoms of my feet so sore as if I was standing around just like in my dreams. Then I also have lucid dreams, and not the cool awesome kind, the sleep paralysis ones where it feels like someone is there or you are about to be killed. The dreams are so bizarre because my eyes are essentially open (I think, at least my mind creates the exact picture of my room as if my eyes were open) and there is either someone coming up the stairs to kill me or a ghost in my room. It freaks me out and those are the dreams I wake up in a full panic because it really throws you for a loop. I mean it seriously feels real!

During the night I also wake up with extreme thirst and typically have to get up to go to the bathroom 2 to 3 times. This of course wakes me up and doesn’t allow me to fall back asleep for about 30 minutes since I have to hit all the proper items I need. Every time I wake up I reset all of these processes. My nights usually end around 10pm, and I typically wake up around 6 or 7am to actually get up for the day. Even though that seems like a long time to be in bed, I am really only getting about 5 hours of sleep if I am lucky. Between taking forever to fall asleep and having issues staying asleep my sleep cycle is a nightmare.

So finally after seeing my rheumatologist for a few visits and getting medication for my fibromyalgia started he strongly recommended I have a sleep study done since a majority of my pain could be caused by the lack of restorative sleep.

When I did actually reach the sleep consult we discussed an overnight study then a day study. She strongly believes I have restless leg syndrome and potential for daytime sleepiness and nightmare disorders. The day study consists of a series of 20 minute naps throughout the day which can show more results than just the night study. My appointment, which was the soonest they could do, is April 12th and it couldn’t come any sooner.

For years I had thought of restless leg but always thought it was a disorder for the elderly, plus I had no doctor suggesting it could actually be something. And even though I have been on a variety of sleep medication not once has a sleep study been suggested, but as soon as I get a second opinion for the misdiagnosed POTS and the correct doctor it was practically immediately told to me that I need to have that addressed.

I have to say that in the past few months my sleep has been getting worse and worse just on my leg habits. During the day they fall asleep and at night they ache like someone has been beating me with a bat.

Since the consultation my mother has been doing research on ways to help my legs until we hit the actual study. The night last week where I had a horrible flare up (which still hasn’t subsided) and I came home like a zombie, my legs were at the point I just wanted to rip them off. The pain was beyond words. And worst of all the pain was all over my body making it harder to handle. That night when I went to bed my mother came in with a bunch of heating pads and wrap for my legs. She thought that wrapping them might help, so I laid there in bed completely out of it ready to cry as my mother carefully wrapped each leg making sure it was just tight enough. She searched all over the house for her old knee socks and put those on as well to keep the wrap in place as I slept. Then she wrapped the heating pads around each leg and got me a bunch of potassium filled munchies. I was so thankful for everything she was doing and the support she was able to give me when I literally couldn’t move. She is amazing in every way.

rest

For now each night I heat my legs and wrap them before I attempt to go to sleep. Today of course I woke up with extreme pain since last night I felt I didn’t need to wrap them, so I wrapped them today which seemed to help. All I can say is that I’m ready for this sleep study. It is so overdue and so needed.

Imagine if I fixed my sleep and my pain subsided. Now that would be a miracle. Imagine if fixing my sleep could fix a majority of my problems. Imagine waking up refreshed and happy! Now that is a future I can look forward to. It is a future where I can truly begin to bloom.

Caged Bird

“I see at intervals the glance of a curious sort of bird through the close set bars of a cage: a vivid, restless, resolute captive is there; were it but free, it would soar cloud-high.” ― Charlotte Brontë, Jane Eyre

It hacagedppened yesterday, another flare up out of the blue. I woke up early to head out for my Praxis II exams, which was then followed by my teaching assessment class midterm. I wasn’t worried about how much testing I was going to have to go through, it was more of just wanting the day to be over with. Once the exams were complete I headed home, finally able to rest. I had a nice lunch and took a relaxing shower, then decided to lay my head down for a few before heading out to my education based math class for yet another exam. And that’s when it hit me.

I was laying there and I could feel it, the creeping pain spreading from my neck to the front of my head. It wrapped around my left eye and started to pulse. My back started to tingle and the shooting pain exploded to every inch of my body. I told myself it was just a headache and to not worry. I took some Tylenol and hoped for the best. It wasn’t helping, and my status was deteriorating at an even faster rate. My legs ached and were ice cold. I was having rapid hot/cold flashes. I was in pain from head to toe.

But I pushed through, what choice do you have when it’s an hour away from exam time and at a university that could care less about your medical condition. I was forced to get out of bed, get dressed, and drive myself to my exam regardless of my pain.

By the time I was at school my mind was completely absent. I looked around and it felt like I wasn’t even there. By the time I sat down in my chair for the exam it felt like I was in a dream, those moments when you are dreaming something so real it feels real. Except mine was the exact opposite. I was there, and this wasn’t a dream.

As the exams were passed out I realized I was screwed. It was a packet of 10 pages with questions we hardly even covered. I went through each page and picked out what I automatically knew. When I hit the simple addition problems I stared at the page blankly. The question was to write a real world example for -5 – -5. The answer was 0, but my brain could not think of anything that made sense. I flipped to the next page. Find the error: 10 – -14 = 4. I looked at the problem, stared at it for a good five minutes. The error was obvious and could be applied to the rest of the problem, but my brain just stopped. I looked at the numbers and they seemed so foreign. I went to write my answer and explanation but my hand didn’t want to hold the pencil. Attempt after attempt I failed, I couldn’t hold the pencil and write properly. My handwriting on the test was so poorly written, the spaces between large font letters and sentences made it seem like I was in grade school. But no, just a senior in college having a horrible episode.

When the test was over we had class, 2 more grueling hours of mathematics. By this time I could no longer speak, or sit up straight, or even really look up. I sat in my chair hunched over with my hoodie bunched up around my neck. I was an icicle. At some moments it felt like my breath was even cold. The class passed and I wiggled and waddled out of my seat, having to pause while my blood pressure caught up with the rest of my body. Walking back to my car I was so dizzy and I could hardly breathe. The massive change in temperature blasted me as I went from a lukewarm classroom to a freezing windy outside. As I managed into the car I just wanted to cry.

I was so out of it that even the emotional process of crying was too much for my brain to handle. So I drove home with this heavy feeling in my chest. I felt like a failure, a down right absolute failure. I cursed all of this medical garbage I was dealt and thought of all my other classmates who could care less that I looked like I was dying in my seat. I thought of how wonderful it must be to not be sick all the time, how amazing life must be when your wings haven’t been clipped.

At moments like these I wonder what my life would have been like it I never would have gotten sick. How much different would things have turned out? If I was given the ability to fly from day one would I be someone completely different? If I was given the ability to fly forever would I be like everyone else around me?

Connecting the Dots

It was 3 months of waiting around for the rheumatologist appointment. 3 months of realizing my entire life was practically a lie, a lie told and set in stone by someone you should trust and depend on.

I was walking around on a day to day basis telling myself I don’t have POTS. It was hard and honestly it was weird. Every pain I had, every inability to complete a task, I never went back and associated it with POTS. It was something else, something yet undiscovered.

The cardiologist left us with the lingering thought that I might have some terrible nerve damage or some other extremely rare and untreatable ailment. But through research my mother and I came to the conclusion before the appointment that more than likely I had fibromyalgia. It was shocking reading articles online about the condition and how just with a quick google search the top 10 symptoms of fibromyalgia I had. Before the POTS diagnosis one of the things my mother was thinking was fibro but no one ever told us to pursue it. Now here I was 6 years later about to find out the truth and have a definite answer.

Going into the rheumatology appointment I had made a list, just a general “all the things I can remember that are wrong with me” type list. This time no stone was being left unturned and everything was being ruled out. The list goes:

  • Head tingling
  • Neck pain with/without headaches
  • Difficulty focusing eyes
  • Brain fog (memory & concentration; slurred/stuttered speech)
  • Face rash with chills
  • Elephant on chest
  • Rapid heartrate (heart feels “weird”)
  • Chest pain (worse when active)
  • Acid reflux and gastroparesis
  • Arm/hand rash (little clear bubbles & at random times)
  • Bathroom habits (half constipated or not normal)
  • Can’t feel feet/legs (sitting or at random times)
  • Cold hands and feet
  • Muscle spasms in leg, feet, back, arms
  • Chronic fatigue
  • Constant aches
  • Severe insomnia
  • Random pain like electric shocks in various locations
  • Chills and sweats
  • Dizzy spells

And that was just what I could think of off the top of my head that I have experienced in the last month on going. As I wrote it I felt this wave come over me like, oh my gosh am I messed up. I could think of no area where I was so and so “right”. But at the same time I felt like I was regaining some power in my life. I was about to go to a doctor that hopefully could help me and really look at this list with a brand new set of eyes.

Can I just say he is the nicest man. He comes into the appointment with his aged face and wrinkled hands and cracks a joke. He goes on to crack wife jokes about how he is a “bad husband” but all in good fun. But then he got down to business. I gave him the list after telling him my story and his first response was.

“Some people might look at this list and think these are all random, unrelated things, but I am looking at this list seeing a connection between each and every piece.”

I almost cried. I was so happy inside. For once it was recognition that I wasn’t making this up, it wasn’t all random, and best of all IT WASN”T ALL UNRELATED. The pieces of the puzzle were finally coming together.

The referring cardiologist suggested somethings for him to rule out and it was all done with simple blood tests. He was a little suspicious that I might have celiac but the results came back negative. In fact the results came back negative in everything. The only area was my thyroid which had me going to a different doctor to rule that out. After that was ruled normal, and just a skewed blood test result, it was time to give a final diagnosis. It was after all fibromyalgia. All the symptoms fit together, everything made sense, and it was time to discuss treatment.

For some people fibro seems like a grim diagnosis, and to my surprise it is so far from it. Like so so far from it. The first medication we tried was Gabapentin, which I could not handle on a higher dose so we switched to this magic medication called Savella. We have been figuring out the dosage and at this moment in time I am on a very low dose. I was having to severe side effects to continue upping the dose so for now it is on the lower end.

The first few weeks of taking it was a miracle. Literally a miracle. I woke up feeling WELL RESTED. I woke up PAIN FREE. I woke up feeling human. I spent my days like someone without all these things would do. I was normal. For the first time since early childhood I felt right. It didn’t exactly last long, but I can say for 3 whole weeks I felt alive again.

We started playing with the dose after 3 weeks and I crashed. The headaches were insane and I couldn’t really eat since the side effect of this medication was extreme nausea. So where I’m at now is getting my sleep issues resolved. My rheumatologist believes after I can have normal sleeping habits again we can play with the dose and prescribe maybe a counter for the side effects.

The hope is seriously there. Every day I wake up and believe that this year might be the year I finally get a handle on my medical issues. And with each appointment that passes my hope grows stronger and stronger.

hope

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.