At last, my Thank You Video!

Here it is, everyone! I apologize it took so long for me to post, but these past few days have been kicking my butt. In between medicine dosages, I sleep a great deal and barely come up for air. My body feels so fatigued, and trying to maintain my health has been an undeniable struggle.

Enough about that, though, as this video is a thank you and testament to those of you who have been there for me in some way or other in recent months. Unfortunately, there are so many friends, family, nurses/other staff members I didn't have pictures with. However, I am sure this is not the last of my video-making days. ( : I actually quite enjoyed working on this miniature project. If you see your picture in here, I hope it makes you smile. If not, and our paths have crossed, know that I sincerely appreciate your kindness more than I can express in words!

-A 

Could I have been HIS National Anthem?

I remember he grabbed me by the hand and whisked me away onto the youth-stricken, bacteria ridden dance floor. There was too much in which he did not know and in which I was not willing to share at that point. In retrospect, I am not sure if my hesitance (and ultimate failure) to reveal my medical and intimacy fears made me a coward or someone worthy of intellectual praise in regards to my tender age. I wanted to tell him, tell him all of the things that made me who I was back then. I wanted to tell him why I was only in school every other week, and why I was shy in regards to him trying to touch me in the most respectable of places despite my past of being exposed in nearly every way to various doctors of sorts . Yet, his immaturity was utterly apparent and there was no way for me to distinguish between high-school lust or genuine desire when it came to his bleak pursuit of me.

I could help him grow internally, I thought, or I could be the laughingstock of the school by next Tuesday. Already, I admit, I was doing all in which I could to help nourish my waning, delicate reputation. I was not even at the ripe age of sixteen and already was dealing with the fallout from keeping a medical condition on the down low. I would not deny of its existence to anyone who was lovely enough to ask me while making full-on eye contact, but I was also not fluttering around trying to gain awareness of it as I am these days. To fully comprehend my mindset at that point, it's necessary to grasp the fact that I was an adolescent emerging into young adulthood. I was unaware of my identity, and of the power in which my mere voice held even though it was trapped in the midst of my 115 pound body. 

Now, nearly six years later, I remember why I pushed him away from me that night and fled into another room like the scared, naive little girl I was. His hand, when in mine, brought about a hybrid of feelings; utter anxiety could certainly account for the vast majority of them. I remember, but I do not necessarily agree, with my 16-year-old sentiments in regards to foregoing taking chances and taking the risk of young, immature love. I did not know all in which I was truly capable of back then, however, and so I limited myself.   

It was a mere matter of weeks before he was with another girl. To be quite honest, I do not blame him, for life is too short to be kept in captivity due to matters of the heart. At least, that is what I believe at this point in time. That girl, I recall, wore short skirts and had long blonde hair. She donned a sense of confidence unobtainable by me back then, and it sickened me inside to watch their love blossom mere feet from my locker.

I am still exploring internally and ultimately questioning if I am capable of achieving self-actualization within this remarkably short lifetime. However, I undeniably feel that analyzing past behaviors in regards to my medical condition is a sense in the right direction. - A

With A Heavy Heart...(A Post as Raw As Mine Come)

* I am currently inpatient for infection as I write this

We were on our way there. It shouldn't be much longer than 20 minutes or so, mum was saying. 20 minutes or so felt like three exceedingly long lifetimes at that point. It felt like steak knives were being jabbed into my thigh (outer and inner) and left buttock. Every second in which I was forced to endure the pain was excruciating. I was rather frightened as I knew another 20 minutes there could have a hazardous impact on my rapidly weakening condition with cellulitis – 20 minutes was enough to go from awful condition to an absolutely nightmarish one. There was nothing else we could do as we were already in Boston, mere minutes away from the hospital. Yet, there was unexpected traffic on Sunday during an early afternoon due to a bridge somebody had decided to shut down.

I sat in the backseat of the car; my crying was incredibly heavy and persistent, accompanied by occasional shrieks stemming from a concoction of pain and frustration. In that moment, I was fighting for my survival and that was the way in which my inner warrior (or lack thereof) chose to manifest itself. My poor parents had the great misfortune of having to listen to me the entirety of the way in a cramped car (a 1979 trans am, our other, much more spacious car, was broken). It must have been an arduous task as seeing somebody you love in such unrelenting pain is a form of torture in itself. I was freezing and trembling all over, and the pain was growing worse by the instant. I didn't know how to cope in that moment. Sanity was a friend from my past that was long gone by now.

If I am being incredibly honest, I wanted to die and be freed from all my misery at that point. Please mom, I said. Pull over and just kill me. You and Dad. If you love me you'll do it. I have great trouble writing this even in this very moment, as it brings back the most horrific of memories. However, when the pain is so extraordinary and uncontrolled and your temperature is so exquisitely high, you are certainly not thinking coherently. Can you imagine what my parents must have felt though? They had been through this with me numerous times before, but never had I requested for them to kill their own daughter. Before you think me absolutely mad, please try to understand that it literally felt as though a bevy of steak knives were impeding upon the infected part of my body. Try to understand that I had a headache so prominent and painful, along with legs that felt like mush and difficulty breathing due to the exasperating infection. I was out of my mind, but with due medical reason.

We eventually arrived there, and the ER at CHB took immediate notice of my down-trodden state. They wasted no time triaging me and then getting my condition under control as my temperature was just under that of 105. On the way to the ER, I said something to my parents that I know was rather hurtful to them. At one point, someone in the car made an innocent remark in regards to my relentless shrieking and hysterical crying.

“You have no right to say anything,” I said. “This is your fault this is happening to me. You guys were the ones who did this to me.” I know what you are probably thinking. What an absolute ingrate this young woman is to have made such a malicious comment. And, admittedly, that hadn't been my first time making a comment like that during a time of medical urgency. For me to imagine you calling me an ingrate is probably somewhat mock-able, as you are probably thinking much worse of me at this moment. I get it, I truly do. Sometimes I hate myself for making comments like that, for making my parents feel as if I even think they are partially responsible for my medical condition when I know they would have never wished this upon me.

I have a big heart, I swear I do. So where do comments like that come from? I was physically sick and emotionally a wreck, but that is no excuse. In those moments, when such medical injustice is upon me, it's almost like I look for someone to blame out of anger. My parents, however, are not those people. No one is to blame, that much I know. Still, my anger got the best of me and that in itself is very dangerous. My infections will come and go, but those are the kind of words that haunt a parents forever. I sincerely wish I knew how to be a better daughter, but I don't. I am trying, though, if not somewhat aimlessly.

To parents who of children who have this condition, we know it's not your fault. We know you would change things a million times over if you could. I cannot take back the remarks I've made and the hurt in which I've cast upon my family, and that too is something in which I have to carry around with me for eternity.  - A

THIS is why Americans Go Broke (One of my MANY Hospital Bills)

THIS is why people in the United States go broke. THIS is the insurance bill Children's Hospital Boston sent my house. The real kicker? THIS is AFTER my insurance has paid their part of the bill. The hospital has called numerous times now looking for their money. This bill stems from a vital procedure I had to have done over the summer stemming from my KTS. I have been hospitalized a multitude of times since then, so I am sure the bills will keep on coming. My parents have gone through this the entirety of my life in regards to their medical bills. Where does the hospital expect us to get this kind of money from? Mind you, I was only there in sum five days. I can hardly wait to see what my sixteen day stay comes in at. Since this particular bill, I've been hospitalized several more times.

When I was younger, my parent's spent their life savings on these bills. Now, after all the bills they have endured, they know better than to give into the hospital and are not scared to tell them to go kick rocks.

This is so unfair that ANYONE has to deal with this. Something needs to change, I just don't know how to change it.

My Mind At Its Absolute Unhealthiest; A Look Inside Part 1

Like all others who endure daily living with chronic illness, my life is not just impacted by KTS. For a while I thought this to be false, and believed that I could somehow overcome the odds in regards to the correlation between mental illness and chronic illness. I was different. Little did I know, however, I was already deep within its vicious cycle. Yet, I continued to vehemently deny it despite all of the trouble it was inflicting upon my life. Perhaps that sounds somewhat absurd, but that was my sixteen-year-old mindset of denial speaking. Some of you have already read about my issues with OCD; If you already have, feel free to stop reading as I do not mean to sound excessively repetitive by any means whatsoever. I do, however, refuse to be silenced in regards to this issue as I feel it is one that needs to be addressed. It's vital for people to know that having something wrong with them mentally does not make them any less stronger of a person than anyone else. They need to know that mental illness is indeed a concrete sickness, and that just because it is not a sickness that cannot be seen from the outside, it is not any less real or true to form than perhaps the flu.

 I look back on my early days of OCD with a sense of sorrow; I had no idea what was happening to me or why it was just now occurring (in retrospect, the actual onset of the condition had been several years in the making). For hours on end, I would sit at my dining room table rewriting the same pieces of handwritten homework time and time again. Like many who struggle with OCD, I was quite fixated upon a certain number. Three was, and still remains, the magic number. Only when I recopied my homework three times did I receive a feeling of temporary relief. Only then was I able to move on with my life, although it was only a short period of time until the next compulsion came. I would then need to comply to whatever it was my mind told me to do next, or else I found myself in a place of great mental unrest. It was really quite a horrific, invasive way of living.

 Certain doorways became off limits, because if I walked through them something incredibly bad would happen to someone I cared about. I could only use some shampoos, as usage of certain ones was practically asking for something bad to happen to me or someone else in which I cared about dearly. At my worst, I was showering five times a day and still not feeling clean. I tried to hide this from those around me as best I could. So how did I manage to sneak in five showers a day, you may wonder. My parents would alert me that they were going to run a quick errand, and while they were gone I would leap into the shower real quick and then dry my hair so they had no idea anything had changed. My parents knew that I was showering more than usual, but they had no idea the actual extent of my issues for I refused to speak openly about them. 

The darkness became my enemy and represented all things evil. I could not comprehend how my sister or friends were so at ease with traveling about at night, for in my mind it was nothing more than a death wish. Nighttime was when all the killers were out, and someone could be lurking in the backseat of their car waiting to kill them with a gun. Aside from my nighttime fears, the proper placement of inanimate objects was crucial to maintaining a sense of calm. If said object was even slightly out of place (in terms of where my mind thought it should be), than I was simply asking for my mom to be killed. If I tried to fight the compulsion and tell it that it was rooted in utter absurdity, it would mock me and try to demean me. “Oh, so what you are saying right now is that it does not matter to you if you kill your mom? So now you are a killer too, huh?” I would then start to obsess over the idea that I could indeed be a psychopath capable of killing her own mother. The mental agony was so incredibly draining that I would eventually cave and move the object to a place my mind deemed acceptable. Only then would my mind assure me that I was not a killer or did not want my mom dead for I had taken the proper precautions. The fear was not only fixated upon my mom, I should perhaps note. It was applicable to anyone I had deep feelings for such as my dad or a grandparent.

 In the midst of all this, depression set in and I became a rather divergent person in comparison to my younger, out-going self. Between the anxiety and depression, I was hardly venturing out to see friends on my “healthy” days with KTS. I spent hours of my time in my room eating hordes of fast food, alternating between periods of quiet and crying. Isolation seemed to be the only durable medicine at that time, although I did need to keep up appearances every once in a while in order to maintain a sense of normalcy on the outside. Why isolation, though? Why did that seem to be such a viable remedy as opposed to seeking help? Well, for one, that would have required me to admit that something was wrong with me mentally, and for some reason I thought that to be awfully shameful. Even though I realize it is a legitimate sickness at present, I did not then. Also, going out meant I had to fight even harder to cover my well-hidden tracks. Whether I was out with family and friends, it was especially hard to maintain a poker face while being across the table from someone. It was much more feasible to sit behind a computer and type how okay I was while feeling a sense of despair inside than actually have to maintain my composure in person.

 Inside, I began to feel as though my future was hopeless, and that nothing about my life was agreeable in even the slightest. I felt as though everybody hated me, and that everything I did (no matter how good my intentions were) was wrong. Even though I was thin and beautiful on the outside, I felt ugly and momentous on the inside. I would look at pictures of myself as a little girl, and feel as though I was a completely different person. I felt like I was someone who had let that little girl down abundantly, and the shame I inflicted upon myself due to that lead me to resent myself profoundly. Perhaps it did not help that I had my own group of mean girls at school who were utterly horrible to me at a time when I needed them most. But, at that time, I did not have the capacity to stand up to them as I was so incredibly lost on the inside. I didn't realize that I deserved much better treatment, and therefore allowed myself to be treated as an imposter of sorts despite my kind-hearted nature and constant willingness to help anyone in need at anytime. I realize now, however, that the main issue wasn't the mean girls, but my unwillingness to stand up to them properly due to my own mental malfunctioning. I bought into this concept that I was less than the others for I was already prone to self-deprecating thoughts due to my depression and anxiety.

Me at Sixteen

 ***I will continue on with this post in the upcoming few days. In the meantime, however, I would like to say that anyone secretly or openly dealing with feelings of depression, anxiety, or mental illness of any caliber should not feel ashamed. These are legitimate illnesses and although the road to recovery is not always easy, it is possible to feel reach a healthier place of living. It's more than okay to ask for help in someone you trust, and there should be no shame associated with doing so. 

- Arianna

Carry On

Hospital flashbacks are nothing new to me; in fact, I have consistently had them since the tender age of 7 (I am now on the verge of turning 23). These horrific glances of the past are a part of my PSTD in which I have had for years now due to medical trauma I've endured since the beginning of my life. Sometimes, it's a mere smell that takes me back to that certain time in the emergency room. Other times, it may simply be a shirt's colored hue that reminds me of the one in which I was wearing when I had become ill yet again. Moving on from the past can be so incredibly hard, especially when what has happened in the past is likely to occur again within the future.

However, I think with chronic conditions like these it is important to shovel on through each day despite an impending sense of doom or you'll never experience the sweeter, more blissful side of life. There is indeed one, that much I continue to believe. With depression and PSTD, it is so much easier to remember the bad as it never seems to be far from one's stream of consciousness. However, you have to fight hard to remember the good. It doesn't really seem quite fair, does it? Why do the bad thoughts and flashbacks come so frequently without any merit, as opposed to the good ones that need to be dug up from the bottom of your brain to even be remembered at all? All I know is that pushing to remember the good times is worth it .

Right now, I sit in a chilly room with half a foot of snow outside my door. Today, we're supposed to get another foot of snow and I likely will not be leaving this room anytime soon. Today was also the date in which I had my appointment in regards to me possibly debulking my ankle with Dr. Fishman, Alomari and Spencer. Now that one doctor has had to understandably so cancel (Spencer, due to the storm), it would be rather pointless to attend as each play a vital role in this potential procedure. Without input from one, I am unable to move forward in making this decision. So, for now, I am back to waiting in regards to what my future holds in regards to the debulking surgery. In the meantime, I have not felt that well in spite of me taking oral antibiotics daily. Yesterday, I came home from my Nana's to find a new angry red spot on my leg, although it has lessened greatly in pigmentation today. However, I still feel so week and down-trodden from my last hospitalization. I know that despite the new calendar year, my anatomy is the same and I will experience frequent hospitalizations at some point in the future. Whenever I remember the numbing pain that accompanies me during infections or following a surgery, I cannot help but shudder due to fear.

 But you know what else I remember? I remember the turquoise colored water and sense of tranquility that fell upon me that day as I lay peacefully upon my raft in that Caribbean water. I remember feeling like one with the ocean, and feeling as though the world was my friend as the sun beamed down upon my 18-year-old sun-kissed skin. It was the ultimate feeling of bliss. Had I not pushed through all of the medical trauma and depression, I would have never gotten to experience that feeling of euphoria. I guess my point is this: push through the hard times in order to get to the good. I am sure that many medical obstacles are to come my way in 2014, but I am determined to fight through them in order to experience the gentler side of life. It's like the old saying: If you want the sunshine, you have to put up with the rain.

 Happy New Year everyone, and may this year provide you with the strength and courage you need in order to battle your own obstacles, whatever they may be. Believe in yourself, and never forget that you are indeed a warrior who is capable of more than you may even know.

 Lots of love, Arianna