Story Share Sunday: The 5 Year Part 2

Read part one here.

I felt like I was losing him, that I needed to assert myself to make sure he remembered I was his girl. We had been together for almost 5 years, he had to remember that and all of our moments. I started down the lovey dovey path. I made him videos with all of our cute pictures. I stopped by his work as much as possible and dropped off his favorite food. I started to befriend any coworker I could, make sure they all knew who I was and that I was a good girl friend. I even went to the point of hanging out with her. Twice we hung out as a group, we didn’t really talk much but I was there. I made points to kiss my ex on cue. Hold his hand as much as I could. Just make sure she knew he was taken.

It didn’t make a difference.

We went fishing together one day, just the two of us and I asked to use his phone for a second. I knew what I was doing. Lately he had been making it a point to hide his phone and delete texts. This time I asked to use it to look up something online. We were having a fine day and he was not even thinking about what I was going to do. He handed it to me and he cast his line. I opened the messages.

Midnight the messages started. She said she was drinking wine. She said he should come over. She was all alone.

He replied he wanted to. He replied he should bring some beer.

She replied that she was cold.

He replied he wanted to warm her up.

I was done. My heart was crushed. I felt like I wanted to vomit. But I went on acting like nothing was wrong. Yet again my brain said there was no definitive evidence he was cheating. Was it inappropriate, yes, but was there much else, sadly no.

This was the beginning of the end. My fear turned me into this jealous beast that couldn’t let go of the fact something was going on. We had so many talks. So many talks. I don’t even remember how many late nights we had sitting around just talking about it.

In the start of summer he was asking me what type of engagement ring I wanted one day and moving in together. By the end we were hardly talking and he was acting so shady. Nights we were supposed to hang out he was gone. He didn’t answer his phone until the next day. I had learned that he had been going up to his friend’s apartment which was a party house. What he withheld from me was that every time he took her.

I found out through comments on facebook, which he shortly deleted. I confronted him again. He proceeded to write me a love letter, saying that he will always be mine, that she means nothing, she is out of the picture.

I believed it. My heart was his. For 5 years we had been together. He had been all that I had ever known and his word meant something to me. A life without him seemed impossible. My mind couldn’t even imagine it. It was him, and it was always going to be him.

He turned the talks into making me look crazy. That I was just the psychotic jealous girl friend. I started to believe it. I truly believed that I was turning into a monster and was pushing him away. Because of this I stopped bringing any of it up. I went on like normal. I tried to contain my feelings the best I could.

In the very beginning of the school year he came over after class. I had stopped by his car and dropped him off some food. I knew he would be hungry, and I didn’t want him to be hungry. I was trying. I was trying my hardest to act normal, to calm down my jealous ways, to move on like the summer had never happened.

part 2

He came over.

We went into my room.

He was quiet.

I looked at him.

He looked away.

He stood up and I went over to kiss him.

He pulled away.

I asked what was wrong.

He said he didn’t romantically love me anymore.

I pulled away. I said oh. I said let’s talk about it. We could fix this.

We went over to the park and just sat there talking for 4 hours. I said if he needed time to think that would be okay. I said that he could leave if he came back. I said if he needed time to figure out his mind it would be okay.

He said he loved me. He said he didn’t know what he wanted. He said he needed time. I gave him the weekend. I said lets talk on Sunday.

I didn’t realize he was literally not going to say a word to me until Sunday, 6 days away. And I promised him I wouldn’t say anything to him, not unless he messaged me first. Every day I stared at my phone, hoping, praying I would see a message from him. I waited and waited. Nothing.

My aunt came down that weekend just because, and Saturday night we went out to dinner. She asked about him. He was a part of the family by this point. I didn’t respond. My mother pulled her aside and told her what was going on. The entire time I went to my mother, leaving out some parts because I didn’t want her to judge me. She knew he was being unfaithful but didn’t have the strength to tell me. It was best for me to figure it out for myself. Plus I didn’t want to hear those words. I didn’t want to think of a future without him.

The restaurant was right next to his work. We walked in, my eyes stayed focus on the doors of his work. His car was there. Her car was parked right next to his. I knew she was there. I knew in those moments that when I was weak and crumbling he was having the time of his life.

I messaged him Sunday morning, since he never did. We decided to meet at the park again. I got dressed to the nines, making sure he knew what he was losing, and I left. I knew it was over. I drove to that park fueled with anger. The lack of response showed he knew it was over as well.

We walked up the hill and sat on the benches. He sat on one end and I on the other. He looked down the entire time. He never had the courage to say that he was breaking up with me. Instead he spewed lies and said that he was scared to be with me because I was so fragile. Because of my MEDICAL conditions he was leaving me. He was afraid to touch me anymore. That I was too sick and it was impairing his quality of life. That he couldn’t truly live with me in his life. That he wanted to have fun and not worry about what would happen to me.

I looked him dead in the eyes and said did you screw her yet?

He shuddered. He looked away and mumbled no.

I told him I’m not stupid. I told him I know what’s going on. I told him that I hope his decisions make him happy and that he can live with himself. I said after 5 years some girl that whored herself around work, who is also 2 years younger than you and underage is what you picked. That you chose her over me, and that you are no man. I didn’t spit what I wanted to at him. I just said I hope he was happy, and I picked myself up and walked away.

He stayed at the bench, and as I walked to my car I never looked back. I got in my car and drove away, knowing my entire life would come to a crashing halt.

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.

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.

Labels

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.

The Liebster Award

liebsterThank you so much to Positive Snapshot for nominating me for the Liebster award! It is always rewarding to be seen my others and be discovered, that is after all the reason I started my blog. Stories need to be told and I thank you all for the support. I know a lot of people view these as spam, but in reality this award in particular brings new readers to otherwise unknown blogs. It is a way for the writer to open up more and create a more close-nit reader community, which I find extremely important. For everyone I have nominated, along with those nominated in the future, I hope you accept the award and take it as a way to share your story as I have accepted to share mine, along with get the word out for others who might be new to this whole thing and don’t have a community just yet. We all start somewhere. Hope you enjoy learning a little bit more about myself!

So Here are the rules:
– Thank the blogger who nominated you
– Answer the 11 questions set by the blogger
– Give 11 facts about yourself
– Nominate 11 bloggers with less than 200 followers
– Let the 11 other bloggers know you’ve nominated them, and give them 11 new questions for them to answer.

Questions:

1.What is your occupation?

Full time student currently a senior at my local college pursing an education degree.

2.Where is your favorite holiday destination?

Although I have not traveled much, my favorite destination would be Sorrento, Italy. The atmosphere is spectacular and the views are to die for. Plus it is warm and what is a vacation without some heat.

3.Do you like pets and do you have any?

I overall am an animal person, but sadly at this moment I am without any pets. My beloved dog Ginger passed away 2 years ago and I haven’t been able to adopt ever since. After graduation I do plan on rescuing an older cat.

4.What is your favorite color?

I have always one to say that I don’t have a favorite color, but if I had to pick it would be burgundy just because it is so catching to my eyes. Plus it’s a color that I look good in, so why no choose it as your favorite.

5.Do you have a middle name?

Sadly, yes. Ann.

6.What is your favorite restaurant?

My favorite restaurant would be Plaza Azteca because it holds so many fond memories. Mexican cuisine is my favorite and Plaza has some amazing choices, also at amazing prices!

7.Do you like cleaning?

Not really, I mean I have those days where all I do is clean but that’s more of a nervous habit that a real desire to clean.

8.Do you like cooking?

I love cooking! In fact on my ever growing list of things to accomplish is learning how to cook. I can cook the basics but to actually learn from a pro would be amazing.

9.What’s your favorite drink?

Root beer hands down.

10.How did you come up with the name of your blog?

I was talking with my significant other and brainstorming what would fit well with the plan of my blog. I found that each part of my life is broken into fragments but together it all makes up who I am. And that is how Familiar Fragments was born.

11.Have you traveled much?

Honestly not really, but the destinations I have been to have been pretty extreme. For my 16th birthday my family went to Italy and for my 21st birthday this past summer we went to the Bahamas. In the states themselves though I haven’t really ventured out, but that is also on the ever growing list of things to do.

11 Facts About Myself:

  1. Seafood makes me sick (not allergic though…)
  2. Every time I go thrifting I tend to buy at least one hideous item (because it deserves saving)
  3. When I’m nervous or thinking I rub my hands together (strange habit)
  4. I have a slight obsession with headband bows
  5. I refused to go to a rated R movie until I was actually 17 (because it was illegal…)
  6. My dream trip would be to go to Japan
  7. I have slept with the same pillow every night since I was 7 years old
  8. Before I had my Nikon D80 I shot film with my mothers camera
  9. My favorite item to photograph is flowers and landscapes
  10. I snort when I laugh really really hard (its the worst)
  11. I must always eat something sweet after a meal, otherwise I feel empty

I Nominate:
Box Photography
Reinhold Staden
Lettersfromapillbottle
JD Photography
Ann Marie Amick
Tamikoji
Finding A Place For Me
Visual Norway
This Guy Photography
Counting Each Minute
Summer Polonsky

11 Questions For You:

  1. Why did you start your blog?
  2. What is a dream destination for you to visit?
  3. What is the best meal you have ever eaten?
  4. If you just inherited a large sum of money what would you do with it first?
  5. Are you an animal person?
  6. Do you have one habit you would like to kick?
  7. Who has influenced you most in life?
  8. What has been your greatest accomplish in life thus far?
  9. Would you rather live in a warm or cold climate?
  10. What is your favorite season?
  11. If you could give away anything what would it be? (advice, material item, etc…)