Confessions

I was hospitalized this past week for a Cellulitis infection. Although, I do not feel as though I can call it that accurately without adding there was some controversy as to what it actually was from the Klippel expert himself, Dr. Fishman.

He will tell you he “simply doesn't know” in terms of whether or not it was a Klippel valve bleeding into another nor an infection. All I know is that I was on the phone with the VAC Clinic Friday with a dear VAC nurse I have known for quite some time now. She told me if it started to spread (the legion) or (got worse) than I could page the surgeon on call or come in. Unfortunately, things progressed in an unfavorable manner and the red, aching legions spread rampantly Friday night. I asked every person I met in the emergency room that night whether or not they were associated with Dr. Fishman and if they were, whether or not they deemed this an infection worthy of antibiotics. None of them hesitated in saying yes, we need you admitted and to treat this “infection.”

I escaped the hospital scene Christmas Eve and was elated to leave the downtrodden venue. There was one goodbye I did not say upon leaving though, it was too hard and I could not submit myself to it right then at an emotional level.

While there, I met a girl who was a Klippel Patient struggling for her life. We had contact prior, but this was our first time having physical contact. She still is inpatient, actually, and tells me she will never be released... One of my least favorite nurses I've ever had would not allow me to go visit my ailing friend a mere three floors beneath mine. Generally, I respect nurses and their word and would not forbid it. I explained to her the urgency of the situation and still, she resisted understanding my plight in a seemingly spiteful manner. She kept saying there was a person above her in the system she had to ask, as though she were referring to some vague deity... Nurses prior to her and nurses after her would instantaneously respond yes when I would ask to visit the ICU to see my sickly friend, but this one was different... Perhaps she lacked emotional decorum so vital to someone in her profession that I should feel bad for her... I hope to never have her again, she was uncouth in her actions and lacked sympathy.

I kept asking her, and finally she told me that the answer was no, I was to forget about it. I phoned my friend and spoke with her sister and told her what my nurse had said. Still, that would not be enough to contain me. Well, this nurse had 3 or 4 patients to deal with simultaneously and not enough time nor resources to keep me on lock-down. So, I snuck down to ICU to see my friend where I was greeted by my friend's ICU nurse that day. She was so kind that I had to disclose to her what me being there in that moment really entailed; lies, sneaking off my floor, and a seemingly spiteful nurse who would probably kill me if she found out where I was. 

I prepared to get a good verbal lashing in return, but the opposite happened, much to my surprise. “Thank you,” her nurse said. “Thank you for being here. She got so excited when she found out you were coming.” We shared a smile and she helped me conjecture a plan in case I were to be caught by my nurse; I could not believe the lengths she would go to in order to help me see my friend! Her heart was certainly in the right place, and she knew that treating my friend did not just need to happen in a medicinal manner... That's what separates a nurse from a good nurse, though, and I am proud that I did not let my vile nurse that day hinder my efforts. I never got caught, by the way. ( = Normally I would not brag about rule breaking but this is indeed an exception to the rule!

She slipped me into the plastic yellow protective gear one must wear while visiting a friend who is on precautions with outsiders. I was well-acquainted with this gear as usually I was the one on contact precautions. I gladly slipped into the yellow suit, mask, and gloves for a chance to see my friend yet again. She was unable to move, and her breathing was as unsteady as could be. In between breathes, she managed to speak her depression to me. She told me that “she was planning her own funeral” and burst into an explosion of tears. Where words failed, my hand didn't. I immediately reached out my hand for hers, and latched on tight. I don't know if there is much else in which I am willing to share of that moment...but damn, at that point you realize there is more at play here in life; there is more than that dress you want but can't afford, than the number of tiles on the ceiling, than how many pounds you lost in the weeks prior... I have had that realization prior, but sometimes the feeling wears off and one is reminded again...

Not many people will understand it, and seeing someone so close to their end demise (for me) is much different than coming back from those times where I almost died. Perhaps because I am at a more alert level...

For any reading who question the validity of this story, I can easily tell you the patient's name and where to find her/her family online but I won't. The Doctor's at Children's would know that at the very least I am speaking of a real patient for I spoke/wrote to them about her while inpatient and they are the ones treating her. I was, however, met with blank stares and non-relies as they are under confidentiality when I tried to ask what more they could do for her. She is a very difficult case for them right now. And, of course, the nurses reading it would know what happened. I am not worried about the validity of my story, though, as much as I am for the patient's well-being. Notice how I emit details regarding people's appearance...for my goal is not to cast trouble or assign blame upon anyone. Her fate looks bleak and if there is a higher power, I call on him, her, it to heal her.

These are my confessions, for now. And I'm not sorry. I would do it all over again, for sometimes breaking the rules means being a better human-being and those dictating them simply cannot empathize with that.

I'm home, albeit in a ton of pain physically and emotionally. I feel so trapped, which is why I write. When I write, I have a chance to tell my truth, and perhaps it can help people to understand me better. I still believe that some of the best stories, though, are the ones untold...or the ones that are happening between the lines.

In case you have not yet come to figure this out, this blog is greatly uneven in content... I write very little about Klippel itself and more about the emotional journey it has led me on. KissesforKTS is more than just about garnering awareness of Klippel itself, but all of the components that come attached with it....

I will post some pictures of the hospitalization in my next post.

LOVE to you all,

Ari

I'm Back

Hey, everyone. I hope you are are genuinely well. I apologize for not updating for quite some time; I've been on a bit of a roller-coaster lately in terms of my mental and physical health. My last surgery did indeed take place, but went horribly awry in some aspects. It was nobodies fault by any means, but it turned into an 11 day inpatient stay at Boston children's hospital as opposed to that of of maybe day surgery or 1 or 2 days...

Writing is something I have been incredibly passionate about for several years now; the entirety of my life I have felt misjudged by the vast majority of my colleagues in a slew of ways. With writing, however I get to reflect and present myself in a way that I am too awkward to do so in a verbal manner...that, in itself, is incredibly soothing and cathartic to me. I also write about issues

I am exceedingly passionate about, like having Klippel-Trenaunay Syndrome and the ways in which it has impacted my life thus far. Mental health is another topic readers will see me discuss frequently; why does it take Robin Williams (May God rest his soul) killing himself for depression to make headlines? While many were aghast that such a loved man could not find strength to hold on, the truth is this disease impacts mere mortals everywhere. 

I look forward to sharing some of my experiences with you as my far as my Klippel, mental illness, experiences at CHB, and other personal matters are concerned. You will never see me holding a scalpel or be behind the laser of a machine that has helped save my life numerous times, but I hope to save lives in a different way. That is what envokes a burning flame within my soul. I have found my passion throughout the past several years, and despite my obstacles I hope to achieve them. 

In the meantime, though, I do believe in the kindness of strangers as the Klippel family has kept me afloat on many of my off days. They are no longer strangers, though, but treasured friends despite where they end up on this sometimes rather unpredictable, jagged journey.

When I started this post, it was my first time writing since my last one. I was not even quite sure I would be able to construct a simple sentence let alone write in paragraph form...here is to hoping this was somewhat edible in content. 

I greatly anticipate writing more incredibly soon,
Ari

Why I Stopped the Sirolimus: Part 2

What I am about to write on here is rather risque in content, but in order to begin to help readers understand why I stopped taking the Sirolimus, I feel it's vital to share this information... It is a passage derived from my own personal diary, one in which I swore I would never share with anyone. It is not modified in the slightest, and was copied and pasted directly from my own personal document. At the time this was written, I had been on the Sirolimus for a little over a month and was off the anti-depressant that had been helping me so greatly with my depression since I had started it (Viibryd). However, I was forced to come off this particular anti-depressant because it interacted with the Sirolimus, and reverted back to one that had helped me minimally in the past (Prozac). We (my doctors, family, and I) were quick to make the decision to wean me off the other anti-depressant in order to start the Sirolimus pronto, as my Klippel was undeniably out of control. At the time, it was my only hope of achieving medical stability. However, after a couple of weeks of taking the Sirolimus, I felt myself regressing back into a profound state of depression. The medication in which I was weaned off of was the only one that had given me a true respite from my depression in quite some time. So, with that said, here is a passage from my own personal diary, written during one of my all-time low points (while taking the Sirolimus and Prozac). Please pardon the foul language, as this was not initially intended for anyone to see. I am actually rather embarrassed to share it, but honesty genuinely is my policy on here.

Disclaimer: I am much more mentally stable than when I wrote this particular passage, and I am safe. By no means am I in danger of hurting myself. As I said prior, I am in a different state of mind than when I penned this particular piece of writing (or ramble, rather). If, however, you ever find yourself feeling anything like this, talk to someone immediately. Depression is manipulative and wants you to keep these feelings internalized...it does not want you to ask for help. If you ask for help, then the depression loses some of its power... In order to overcome it, though, it is of the utmost importance to seek help through a trusted family member, companion, or professional. 

April 10^thI don't really know what to type...I am depressed beyond belief. I just need someone to sit with me and listen to me blubber on for hours on end until I get all of the tears out. How did I become so incredibly f***** up? What happened to me? I finally am acknowledging my extreme and severe feelings of loneliness. It's not easy, f*** it's not. I feel lonelier than ever. THAN EVER. I HATE MYSELF. I HATE MYSELF, I HATE MYSELF. THE HATE CONSUMES ME. I'M SO TIRED OF ALL OF F****** THIS. I AM QUICKLY BUT SURELY TURNING INTO A F*** UP, BUT I AM TRYING TO TURN ALL OF THAT AROUND. STILL, I HATE MYSELF, EVER SO DEEPLY. THIS IS A HITLER TYPE OF HATE IN WHICH WE ARE SPEAKING ABOUT. HOW DID I GET THIS WAY? WHAT THE F*** IS WRONG WITH ME? SOMEBODY HELP ME. SOMEBODY, PLEASE. I NEED TO BE SEDATED RIGHT NOW, I NEED THAT. I CANNOT DEAL WITH ANY OF THIS, I AM FALLING TO PIECES. THERE IS NOONE TO TALK TO. PERHAPS THE SCARIEST THING OF ALL IS THAT MY PLEAS ON HERE WILL NOT BE HEARD TO ANYONE.

In retrospect, it is awfully hard to believe that less than a month ago it was me who not only wrote this, but felt such horrific internal agony in which I resorted to writing such deeply demeaning words towards myself. Since resuming the anti-depressant in which I was weaned off of, I am beginning to feel much better mentally and emotionally. I still have plenty of days and times in which I feel low, but I do see the light at the end of the tunnel; I'm beginning to find beauty in even the most simplistic things in which life has to offer again, like the vast beauty of the fluffy white clouds in the sky.

Again, there is a lot more information in which I need to share with readers in order for them to comprehend my stopping the Sirolimus (at least for now). While I was on the Sirolimus, it definitely worked some medical wonders and I will be writing about those as well. I'll be writing more in regards to this matter soon, so check back if interested in reading more about my decision to stop this medication. 

Questions? Feel free to ask in the comment section. I will do my best to answer all and any in which you many have.

Lots of love, Arianna Helena

For the Love of a Daughter

I sat there in the abandoned waiting room tampering with my phone as my right leg continued to shake out of a seemingly perpetual nervous habit; I was feeling especially queasy that day and intensely vulnerable. It had been an incredibly rough week emotionally, and I knew I was going to have to talk about my battalion of pent up emotions that day at my talk therapy appointment with my Doctor. For two days prior, I stayed at a welcoming friend's home as dad and I had gotten into a rather nasty verbal row. The specifics of what were said are not relevant; rather, what is, is the underlying emotions we were both feeling and the way in which we chose to manifest them. After the fight ended, I decided it was best for me to pack my bag and go somewhere else to gain some distance for the situation (and possibly some clarity).

Let me just preface this next segment by saying I can only imagine what being a parent is like; on any given day, I have enough trouble taking care of myself as opposed to adding on the responsibility of an additional human-being! Then, you find out that child, your child, has one of the rarest conditions in the world, and there is little in which you can do to quell their physical pain. Now, add two additional children to worry about to the concoction and the financial stresses of maintaining a family in today's economy and (in my absolute biased opinion) it is enough to make anyone implode to some extent. Not to mention, society still portrays men as the gender who are supposed to be the “tough” and “stoic” ones by nature even in direful situations. A man crying is considered a weakness, which it absolutely should not be. Women and men have feelings, only it is more socially acceptable for women to express them (which is absolutely ludicrous). That, however, is another rant for different time.

For 9 years straight (up until now, age 22), it was not atypical for my dad to receive calls in the middle of the night (while at work) about me being rushed to the emergency room due to some horrid cellulitic infection. Prior to those 9 years, I had somewhat of a medical reprieve for a quite a while aside from some scattered strenuous surgeries and blood clots. As a baby, I was septic and had some major surgeries as well, but my childhood was relatively normal.

Nothing about my life in the past 9 years has been normal, though, as my condition continued to deteriorate despite several methods of medical intervention; I cannot even imagine the hurt and angst a parent must feel having to bare witness to this all. And yet, my dad was present for all of it. Sometimes, he was the one who would drive me to the hospital when I was incredibly ill, and he made sure not to go too hard over the road bumps as they killed my infected buttock area. He came up to the hospital practically every day (unless working one of his 3 jobs spoiled his ability to do so), and was constantly on the phone with me. While I am not a parent, I can only imagine how utterly petrifying all of this has had to be to my parents over the years.

When my dad and I had been fighting days prior, we threw a slew of hurtful daggers at one another. The content, as I said prior, is not what is relevant here. What is, though, is the underlying emotions that evoked our grotty scrap in the first place. Anger, psychology claims, is a secondary emotion one resorts to when trying to “protect ourselves from or cover up other vulnerable feelings.” The primary emotion at play here, I believe (on both ends) was an accumulation of massive fear. For the first time in a long while, I was physically healthy. My antibiotics along with the Sirolimus appeared to be working in conjunction with one another, as I had been out of the hospital for a month now! While we were astounded by my progress, I believe my family and I carried a large amount of fear that my health could be zapped away at any given moment. We were not used to experiencing medical bliss, and it was hard to feel as though the grim reaper wasn't always a single step behind...

Shortly after we resolved the fighting, I asked my dad what word came to mind when it comes to my Klippel. Nonchalantly, he stared up at me from the television couch and said “heartbroken.” Well, that made two of us, anyway. What he didn't know was how badly I wanted to shield him from that pain, to erase all of his most haunting memories that stemmed from my medical condition throughout the years There was still so much left unspoken, on both ends of the spectrum. I told him about my talk therapy appointment that upcoming Friday, but did not think there was any chance of him actually attending. For one, my appointment was at 11 AM and he did not get home from his overnight shift until approximately 1030 AM. Then, he was supposed to go meet various vendors for my parent's seafood business. He said that it was highly unlikely he could make it and that Fridays were the worst days possible as far as his rigid schedule is concerned. So, that Friday, I drove to the appointment myself and expected to be speaking with the Doctor alone, as I usually do.

As I'm tooling around with the picture APP on my phone, I hear the entrance door to the office crack open. It caught me rather off guard, as it was so quiet in there one could hear if a mere penny dropped. Then, I look over to realize it is my dad, fresh out of work, still in his uniform. I would later go on to say “I would have expected Hitler to rise from the dead more than him coming today,” in my appointment. “God forbid,” my therapist replied. My dad and I each talked (and listened) a great deal in the appointment and learned how to have a more healthy relationship with one another by way of communication and respect.

Upon leaving the building, I thanked my dad for coming that day as I knew it was no easy feat for him. The longevity of the appointment was 2 hours and threw the entirety of his work day off schedule. I was also overwhelmed by several positive emotions for the first time in a long while... I had a dad who genuinely cared, I was one of the lucky ones...he was willing to fight for me. I reached out to shake his hand, but instead he embraced me. We had made it through another storm, and suddenly I could see the Rainbow peeking out from the other side.

Tomorrow, April 17^th is my dad's birthday. It is a day I hold near and dear to my heart, and will treasure until the day I die. Despite whatever silly disagreements we may get into every now and then, our love is genuine and cannot be replicated. We share a bond that most fathers do not have with their daughters; we know how to make each other laugh in a way in which no one else could possibly understand.

So, here is to you, Matthew Faro, for being the best dad in which I could have ever fathomed. Thank you for all of the sleepless nights you spent with me in the hospital, and for all of the hard work in which you have done to keep us all afloat. Your work ethic, as I have always told you, is of great inspiration to me. Many a time, people ask me how I have always gotten such good grades or managed to get through one finicky situation or an other, and I always tell them that you are my strongest motivation. Happy birthday dad, and may this year present you with a lot less stress, good health, and endless heaps of happiness.  - Arianna

When You Feel All Alone in the Universe

These days, I find myself dealing with the emotional habit of extreme loneliness. It feels as though the rest of the world has seemingly abandoned me and moved on, and I am stuck in my own bantam, isolated corner of the world. As a 23 year old, the vast majority of my friend circle has graduated from college, procured jobs in their desired fields, and even found healthy, fulfilling intimate relationships. Perhaps that sounds as though I am idealizing their current situation, and perhaps to some extent I am. However, what I typed was factual; what they would have to say about their feelings of living in the real world and the stresses that accompany it may be quite different...I, on the other hand, struggle to maintain old and new ones alike as I struggle with the physical symptoms of this condition along with the emotional ones. 

Anyway, I often find myself sitting alone in my room reveling in my feelings of utter loneliness. Do SOMETHING, I tell myself. Don't just waste the precious moments others who are deceased wish they could have back wallowing in your own self-pity...so I call or text a friend, only to find out they are busy. I log onto the dating website I joined on a whim about a year ago. Maybe there will be a decent lad worth speaking to and killing some time...Oh, no, just another 20-something-year-old "man" wanting me to send revealing pictures of myself to him, or there's the 60 year-old-man with the ironic facial hair desperate for constant companionship in which I cannot give him. 

On a late Wednesday night, one is not very likely to find someone to hang out with that needs to be in work by 6am the next morning. Nor am I very good at making connections these days. Lord knows I try...but panic is a constant in my body. Even when it may seem I am at ease through the eyes of someone else, I am probably just trying to pass off as okay. The slightest sensation of pain in my left buttock or thigh is enough to evoke an emotional riot within me... I think back to that time I was sitting in the school library about a year back now, working on next week's homework assignment and then came a painful twinge throughout my left buttock...next thing you know I am being rushed to the hospital and trying to fight for my life in the emergency room. My temperature sky-rocketed, the cellulitis area burned as though it was on fire and it took me hours to shake those damn rigors. How am I supposed to know that is not what is happening now? God, if I could have a crystal ball at times I swear I would be so much more at ease with life and more relaxed... or perhaps I wouldn't...perhaps it's a good thing I don't have that non-existent crystal ball to see into the future... LORD ONLY KNOWS.

 I feel as though most people don't understand what I have been through medically and/or emotionally, and it makes me feel as though finding genuine relationships in the future will be exceedingly difficult. I try to remind myself that everyone has gone through some kind of trauma, and that I will more than likely not be able to understand theirs...therefore how can I expect them to understand mine?

I do have a great deal of support online, that much I cannot deny. Still, it is not the same as having face to face contact and being able to smell the scent of someone's perfume of gaze into their eyes empathetically during a conversation. I do not mean to sound ungrateful for the unwavering support I have found online for without it I am not quite sure as to where I would be emotionally...probably in a perpetual state of emotional ruins! It's just that these loved ones are scattered throughout the globe, and quite often I find myself wishing I lived within driving distance of them and could accompany them in person, whether it be to laugh, cry, or whatever...

I am going to be incredibly real about something in which I have experimented with this past week and a half; drinking as a method to cope with my loneliness. Perhaps it was the worst kind of drinking, as it was drinking alone and under the radar. Never have I reached a state of being fully “drunk” in the entirety of my life thus far, but feeling buzzed was enough to make me abandon this rather deceitful method of coping. In fact, just prior to typing this I took a 12 pack of beer (with 6 cans still remaining unopened), walked down to my kitchen hall and abandoned them in the communal trash bin. Absolutely no regrets, either. Tonight, after consuming 3 beers, I walked into my kitchen where my parents were residing. Prior to me even saying a word, my dad said “you've been drinking, I can tell.” Nobody knows me better than my parents, and they are quite aware of my vices. Still, I don't want to be that girl who drinks to deal with feelings of loneliness, guilt, shame, etc.

Perhaps the hardest part of the situation I find myself in is that I do feel as though I've reached out to several people nearby, as professionals tell you to do when feeling lonely. Yet, it seems as though nobody is able to be with me, and that leads to me questioning myself a great deal of the time. “Why does everyone hate me? What did I do wrong? Surely it's me, for everyone else seems to be doing just fine... Again, why does everyone hate me? Why aren't I worthy of companionship?” These thoughts constantly inundate their way through my mind, and yet I never seem to find logical answers despite hours of emotional rumination.

Unfortunately, I must admit that at this point in time I do not know how to deal with my feelings of extreme loneliness, but I do plan to fight these emotions with all the energy in which I can muster. Several books and online articles exist about this topic, and provide methods to alleviate these negative connotations in which some (like myself) attach to themselves. I also have my trusty talk therapist, and I believe together we can get me through this. For 22 years, I dealt with my problems in the utmost healthy manner, without turning to foreign substances and abusing medications and what not. Now, at 23, I am deciding that it is I who is in charge of forging my own future, to a degree at least. I cannot help what will happen to me medically, but I can control how I choose to deal with the collateral damage in which this medical condition topples me with.

Until next time,

Arianna

Put On Your Combat Boots

While inpatient, I could almost never sleep at night despite the cocktail of drugs I was on (which often included rather hefty dosages of oxycodone and clonazepam). Feelings of loneliness, guilt, and shame were some of my closest companions, and they liked to keep me awake for considerable hours on end. Sometimes, (if I were feeling strong enough bodily at that point in my recovery), I would weasel out of my room in my wheelchair around the 4:30 am mark. Mom was always just mere feet away from me fast-asleep, and I'd manage to exit the room without waking her (as was my goal). I'd push myself to the elevators, and maneuver myself to the downstairs lobby. Along the way, I would run into various familiar staff members and we would exchange polite greetings. Often, they would look at me in disbelief and say something along the lines of, “you're still up?” Despite the emotional storm brewing within me, I would often just respond to their remarks with a coquettish laugh that made it seem as though I did not have a care in the world. I would then proceed to sit outside for about an hour on end watching the doctors and nurses make their way into the hospital through the ER doors for rounds and what not.

I would be lying if I told you I found the sight of them anything other than phenomenally inspirational... Often a time, I felt as though I was a useless, miniscule discoloration present on Earth, despite all of the love and affection that was perpetually shown to me by friends,family, and medical staff alike. Still, I could not shake that substantial feeling of fruitlessness; it seemed as though my existence was only cause for chaos... rather that be to my family, friends, or doctors. None of them had done anything to make me feel this way, quite to the contrary, actually. Yet, what purpose was I serving spending the majority of my life in a hospital bed trying to tame a chronic condition that seemingly had every intention to demolish me despite several methods of medical intervention?

However, seeing the various medical professionals make their way into their personal playing arena incited great hope within me; it made me believe that perhaps one day, I too could go to work on a timely schedule and help make a difference within somebody's life. I believe that on the vast majority of nights, this is what gave me the willingness to continue my fight to get better, despite feelings of impending doom and a body that constantly said otherwise.

These professionals were people who had worked long and hard to achieve their goals, and they were constantly willing to learn. Often a time, they contained the whole package; not only were they competent in terms of their specialties, but they were empathetic and seemed to have a thriving personal life outside of the hospital. They, indeed, were perhaps one of my strongest motivators to recovery; of course, like all human-beings, I could assume they too had been met with several challenges along the way to their successes. Yet, here they were, day after day, walking into work ready to perform their duties and learn.

- Arianna

I needed a reason to belief in a greater purpose for my own life, and they helped give me just that. I was cautious to have myself back upstairs by the usual time of surgical rounds, and by then my internal attitude would experience a rather large shift...I felt inspired to begin yet another day of combat.  

The Ugly Truth

I recall the days I used to sit huddled in the corner of my home bathroom crying my eyes out – it wasn't because I was in pain from my KTS, either. Truth is, at that time, I was in a great deal of pain from my KTS, but that was not the main issue on my mind. When I was home from the hospital and in high-school, walking down the hallway in-between classes and using flights of stares was enough to evoke a flood of pain. Yet, that wasn't all too significant to me... what really mattered to me, as I touched upon in previous posts, was how I perceived the way in which I looked on the outside. I hated my appearance so much, that at times it was all in which I could focus on within my head... The only real distraction, I suppose, was doing my schoolwork in isolation. Perhaps that is why I got such remarkable grades, especially for a person who was forced to miss school as often as I was. Yet, whenever I found myself in a throng of people, my head went into a complete tizzy. “Why can't I have hair like that girl? Her nose is so much better than mine. I'll never be able to prance around in a cute skirt like that. Why couldn't my eyes be a striking blue or at least hazel? I'll never have any of that. No one will ever want me. I'll never have that perfect life.”

I guess I should note that at this time, not only was my leg expanding in size tremendously (compared to how it was in size when I was a child) but that I had also developed blebs in my genital area (more toward the inside buttock). These areas caused me so much pain on a daily basis, that much I can tell you. When placed under water, they would sting immensely. When I had pants on, the material would rub up against them and cause them to get irritated. I still get these blebs periodically, and have a surgery to remove them once they are ingrown about every two years. They are terribly uncomfortable, and for a while I carried around so much shame associated with these tender areas. I felt like I was not worthy enough for any guy to ever want to be with me...

So, as I touched upon in the last post, I felt the need to overcompensate in regards to other aspects of my appearance. I hated my eye color, so I changed that with the ever so fake looking colored contacts. And, by the way, this is not to demean anyone who wears them! Most of the time, though, I just chose colors that looked awfully unnatural on me. I died my hair probably every color in the book. The one good thing, I will say though, is I never had an eating disorder or worried about my weight. However, in terms of all other revenues related to physical appearance, I was constantly trying to achieve perfection. Still, I wasn't satisfied no matter what lengths I went to to altar my physical appearance. I didn't understand that there was more to this obsession...

One time, I remember getting all dolled-up for an event at my Grandmother's house. I had been looking forward to going, as I always enjoy time with my family immensely. Yet, at one point, I looked in the mirror and thought there was no way I could be seen like this. I remember I was dressed in a gray sweater, had my blue colored-contacts in, and was sporting a full face of makeup. Still, I felt so incredibly...ugly. I felt ashamed of myself, and like I needed to come up with a plan to be “prettier,” so to speak.

I lied to my parents and told them my leg was hurting and that I really just was not feeling well...they had no idea what was going on at the time in regards to how atrocious I felt inside. Nor could they or anyone else, it was perhaps my best kept secret back then. I wish I could say my Grandmother's house was the only time in which I did that, but it was far from it. I used to shower four times a day, not only because I was petrified of bacteria and constantly feeling dirty(stemming from my overt OCD, undiagnosed at that time), but because I also thought I was washing away some of the ugliness that occupied my body. Eventually, all of this internal frustration turned to utter shame and I was not forced to acknowledge these issues until I had a full-on breakdown at the age of 18 in which I could not stop hysterically crying for several weeks period prior to an antidepressant.

Now, I still struggle with this stuff to degree. As I wrote in my last post, the mild acne onset from the Sirolimus was enough to merely cripple me emotionally. Yet, here I am, still dealing. Now a days, as a way of practicing exposure therapy, I run out here and there without makeup. I try to take pictures of myself without makeup, where I have my natural light brown hair and clear-colored contact lenses. My natural beauty is something I try to cherish, and perhaps more importantly I realize it does not dictate the rest of my life.

So, who wants to see a picture of me in a far from perfect state? I took this upon waking up this afternoon, and I am not wearing any makeup and clearly my hair is, well, you can see for yourself...hahaha

I consider small things like this to be exposure therapy.

Until the next post, Arianna

Update on Mental Health Petition for BCH

Hi lovelies! I have so much in which I want to share with you guys... unfortunately I will not be able to do it within this one post. However, this post is certainly a start, anyway!

Perhaps you remember the petition I initiated a few months back, the one where I wrote about the need for the VAC Clinic at Children's Hospital Boston to have an informed psychologist as part of their staff. As a well seasoned doctor once told me, 

“what good is it to have a patient who is physically healthy if they are so emotionally wrecked inside that they are unable to get out of bed in the morning?” 

Chronic illness and depression practically go hand in hand, but with proper treatment from trained professionals (as research demonstrates) one can indeed live a life engulfed in prosperity and jubilation.

The reality is, though, that the mental health portion of this condition is largely ignored. In result, a great deal of patients struggle with hefty amounts of depression, anxiety, and other disorders that can be utterly crippling. No one should have to live life that way, yet so many people with Klippel do as they are unable to find the proper help in regards to dealing with this condition (and, unfortunately, there is not much available). That is why I asked Boston Children's Hospital to step in and, well, step up.

I sent my petition to Dr. Fishman recently and was so touched by how responsive he was in regards to this matter. He agreed with my reasoning wholeheartedly, and was willing to help me fight for this cause, as he too believes it in very deeply. For those of you who have not met Dr. Fishman, I will tell you this much: he is a phenomenal human-being. Aside from being incredibly skilled as his work, he is a fabulous humanitarian that genuinely cares about the needs of other people.

I am not quite sure he would want you to tell me this, but he can get pretty emotional when it comes to his patients. At the last meeting, he cried when he saw images and what not of how much Sirolimus has helped various patients of his; I know this to be true because he told me when I ran into him the other day.

Back to the petition, though. Dr. Fishman sent out an email to an array hospital leaders. He also had a 45 minute meeting with the Chief of Psychiatry, David Demaso. Dr. Demaso now wants to have a meeting with me in regards to this matter, and is very receptive in helping to find a tangible solution to this problem.

Had Dr. Fishman not been so active in spreading the word about my petition (along with being incredibly supportive and giving me the courage to believe in myself), I would not have this astounding opportunity to meet with such a high-ranking Dr. within the psych. Department. Dr. Fishman and Dr. Demaso are incredibly willing to implement the change in which is so desperately needed in order to give VAC patients the best all-around care possible.

So, basically, change is immenent people! ( : This is fantastic news for patients/family members of patients of Vascular Anomalies patients at Children's Hospital Boston. I will keep you guys updated as to how my meeting with the highly-esteemed Dr. Demaso goes! I do not yet have an appointment set up with him but plan to make one tomorrow.

To read my previous thoughts on this matter, please click here to read my Calling You Out BCH Post I did several months earlier
Also, click here to ready the petition I did

Below is a picture of Me and the lovely Dr. Fishman at the KT Conference approximately three years ago. Unfortunately my eyes are shut in it! : (

More soon, Arianna

The Depression After the Storm

Many people who have just gotten to know me recently may find it rather challenging to grasp what I am about to tell you. Or, perhaps given your own experiences and expertise on the subjects of mental health and chronic illness, you won't. Anyway... Often a time, I come off as a rather vivacious and spirited individual who has a deep zest for life. At my best, I like to think this is indeed true and that my volition to live is what has gotten me through so many tumultuous medical episodes (aside from competent doctors and luck, of course). I fought, in essence, to keep fighting. There were ample times I wanted to give up, but I fought like hell to keep pushing forward.

The truth is, however, that I struggle a great deal with depression and anxiety, not unlike a lot of chronic illness patients. I have been rather open about this in past writings, and it is not something in which I am ashamed of in the slightest. I have clinical depression and OCD, and to me they are illnesses just as real as that of Klippel-Trenaunay Syndrome. They are fueled by a chemical imbalance, and that in itself is nothing to be ashamed of. Just because conditions of these kinds are concealed to the naked eye, does not make them any less earnest and/or real than pan-optical conditions or diseases. In the past year, I have spent so much time focusing on my Klippel-Trenaunay Syndrome that I have let my mental health (regrettably, but understandably) fall to the wayside. It was not my intention for this to happen, but life intervened and often I was not able to make it to weekly appointments as I was either in the hospital, had just arrived home from the hospital, or was recovering from a surgery. Other times, during my brief "off" periods from Klippel, I just wanted to rest and not talk about things that were disconcerting to me. The problem with not processing these feelings, however, is that they build up in a deeply residual manner until it becomes nearly impossible to cope in a healthful way.

So, I now find myself in a position where I have to take action or I will crumble into a million little pieces. I feel like I already have, at least on the inside. On the outside, however, I appear well put together and can always muster up a grimace. On the inside, I have been deeply struggling and know I am regressing mentally despite taking my antidepressant on a daily basis. It's time for me to acknowledge these feelings and address them directly, because it is just as important as treating my Klippel. So, today, I am going to call my therapist and ask to meet with her three times a week as one is certainly not enough. The thing about depression is that it doesn't want you to ask for help, it wants to isolate you and keep you feeling disconnected from everything and everybody.

While my depression and anxiety has never gone away since I first started dealing with it several years ago, it became more bearable through a great deal of talk therapy and medication. Right now, I am in the midst of a flare-up and it is rather frightening. However, I hope that by acknowledging my current state and addressing it, I am on the right track to being in a better place mentally.

Never be scared to ask for help. Never feel as though people will look down upon you if you do as that cannot be further from the truth. Never retreat as things can get better. As I sit here, I do not feel as though things will get better. That is my depression talking, and I have to know that despite how I feel, it is a FACT: things will get better. Facts are facts, and they override feelings in situations akin to these. They have to.

Sending you all so much love. - Arianna

Relentless Chronic Pain, Establishing Normalcy

“Walking through the city street, is it by mistake of design, I feel so alone on a Friday night can you make it feel like home if I tell you your mine, It's like I told you Hunny”

I hate the feeling of a flare-up, it drives me incredibly wild to be absolutely honest! Perhaps the essence of the problem is that one cannot always be sure it is merely a flare-up in that moment. One day about a week ago, I awoke with a cellulitic red spot located somewhere between my foot and ankle. It did not look bewildering by any means, but certainly suspicious. The other evening, I had to awaken my mom in the midst of her slumber to dip into my emergency stash of oxycodone as the pain was radiating throughout the new red spot and the entirety of my lower leg. This pain was barbarous; it would not allow me to sleep and was certainly an anomaly as far as my everyday painful sensations are concerned. It could have been inflamed veins, although I will likely never know the real source with such an inconspicuous condition (unless I had chosen to venture to the emergency room). Fortunately for me, no further symptoms accompanied this area such as temperatures or chills and what not. So, the pain medicine eventually kicked in and the next day the area in its entirety felt much better (a heating pad accompanied the medicine and did great justice as well, I believe). However, the spot still remains although I am still very much so stable in vitals and other telling symptoms.

I am continuing on my IC Cephalexin 500 MG capsules twice per day and I truly feel they are doing the heavy lifting in maintaining my health. I will be on them for at least three more weeks or so. While they can be rather upsetting to the stomach, it is far worth the residual side effects to be home and in a state of “normalcy.” Discovering normalcy, however, is still a startling challenge living with a chronic condition that causes me so much relentless chronic pain. The infections are gone (at least for now) and I do not mean to belittle that greatness by any means. However, the lower leg pain is so incredibly persistent and vicious in nature that at days I am very much so overly-sensitive and on edge; to say I am emotionally well-adjusted at present would be somewhat of a lie. However, I am doing my best to maintain honest, healthy friendships and venture out every now and then despite the pain. Sometimes, I find myself lashing out at those around me and being incredibly irritable; this is by no means the way in which I like to conduct myself. I feel guilty quite often about this, and try to communicate my remorse to those in which I may have unintentionally hurt. However, I cannot use my pain as an excuse to treat people poorly or I will be doing so for the rest of my life! By no means do I want my legacy to be that of a moody Mindy or bitter Betty.

Friends urge me to be optimistic about future breakthroughs in the medical world, but I have great trouble doing so. I understand where they are coming from, but they simply cannot understand my point of view unless they are the ones in pain 24/7. It eats at one's nerves, and chronic pain has been scientifically proven to mess with the brain's chemistry. Perhaps, then, it is no wonder I often find myself anxious and depressed despite being under the care of a talk therapist and doctor. However, I am greatly anticipating my appointment on January 3^rd to meet with my doctors to address issues of what we can make better with my Klippel.

Below is a picture of me with my sisters on Thanksgiving. It was a truly lovely day as I got to celebrate with the people who have been there for me through the worst of times; at my ugliest, sickest, and meanest. Yet, I know they are not going anywhere and I know I am indeed very blessed to blanketed in such unconditional love. May you all be well. - A  

Dying on The Inside: Depression

“I mean it, I want to die because I cannot take this anymore,” I texted to my sister as tears paraded down my lethargic face. It was 6AM in the morning, and I was sitting in a dark, abandoned hallway adjacent to the 10 North West Unit at Children's Hospital Boston. A swarm of tears cascaded my tear ducts, and I could not get them to cease; if I'm being brutally honest, I may not have wanted them to, either. Sometimes, after crying for a long while, I actually find that I feel a little bit better. There is a scientific reason behind this that I learned a few years back: When upset, your body gathers a plethora of stress hormones that cause you to feel lousy inside. Upon crying, the stress hormones are hidden within the tears. Therefore, they are being released from the body. No such luck this time, though.

I had been crying for nearly two hours now in the same obscure, forsaken hallway. I had called my dad earlier, but he could only talk for a few minutes because he was stuck in a work meeting. I choked through my words as I spoke to him, they weren't so much words as they were syllables. He could barely understand what I was saying because I was so inconsolable that I could barely manage to pronounce a single word without sobs overshadowing my words. My mom, meanwhile, was dozed off in my patient room located on 10 South. I continued to text with my sister as she prepared for school that morning. I was, at this point, seemingly devoid of all hope. Sobbing in the empty hallway seemed to be the only secure place to cry, as I did not want anyone to overhear me and catch onto my despair. The last thing I desired were nurses or doctors all over me because of my elevated depression and anxiety. I didn't feel as if there was anything they could say or do to make me feel better while there. That, however, is the very essence of how depression works. It wants to keep you isolated, to make you feel as if there is no way out. That's not true, no matter how much it may seem like it at that point in time. In fact, in moments like these, it is most important to reach out to somebody you trust wholeheartedly. Whatever you do, do not sit alone with your depression. It is, indeed, okay to admit that you are not okay.

I felt so incredibly lost; as a young child, I never thought much of my live as an adult. Perhaps that is why I was so astonishingly happy at the time despite all the medical chaos I endured as a juvenile.. I lived in the moment, instead of dwelling in the past or being terror-stricken over what may happen in the future. Even recognizing this, I could not seem to change my ways nowadays. I was brimming with despair and self-loathing, and felt as though I were not worthy of good things coming my way. I hated myself. In fact, I still dislike myself a great portion of the time. I either feel ugly on the outside or on the inside, usually simultaneously. It's quite terrifying because when living a lifestyle akin to this one, it is important to be one of your own best friends. 

Depression is so purely manipulative; from living with it for several years and majoring in it at school, I knew that. Still, I could not seem to move past it. I was on antidepressants that helped a great deal with my OCD, but still left much to be desired in terms of my depression. When I was not in the hospital, I was meeting with my doctor and talk counselor at least once a week. I had just started seeing them over the summer season; what made them unique to other people I had seen was that they actually specialize in working with patients who have chronic illness. I would suggest that any and all patients dealing with this combative disease see a talk therapist at the very minimum. Fight for the help you need and deserve. Don't every allow anyone to make you feel inferior for seeking it, either.

Did you know that 1 in 6 adults receive some type of mental health care in any given year? There is no shame in doing so, and yet our society still stigmatizes people who suffer from mental disorders. Indeed, there is a high (or rather positive) correlation between those with chronic illnesses and mental illnesses like depression and anxiety. When you live your life in a constant state of pain, it is easy to fall into negative thinking patterns. Which is why, according to the Cognitive Model of Psychology, it is adamant to adjust internal processes.

Later on that night, I visited my old nurses on 10 North West. I had seen them earlier in the evening, but it was so busy that we barely got a chance to talk and catch up like we usually do. So, I went back to the main desk to see the nurses and desk staff. At this point, they feel like good friends as opposed to workers. They all hold a special place in my heart as they have seen me at my absolute worst and helped nurse me back to health. We've exchanged countless stories about our personal lives, and somewhere along the lines they became more than just staff, but friendly faces as well.

“You always have a smile on your face,” said one of the girls. “You have such a great attitude despite everything.” "Not always," I laughed softly as I stared down at my feet. I felt a smile widen across my face, but inside I knew it was a facade. All in which I was trying to do was keep it together, to not fall on my knees and start uncontrollably sobbing in front of the staff that was there. 

“But thank you,” I replied. “You guys are honestly the sweetest.” I meant what I said, but the smile on my face was in deep contrast to my dying insides.  

I think it's not so much about wanting to die, as much as it is just feeling as though you cannot handle the burden of the physical and emotional pain anymore. You feel as though you are drowning in tumultous waters, and answers are far-fetched, if they even exist at all. Still, you need to fight to stay afloat until that lifesaver reaches you. I promise in the end it will be worth it, although it may seem like all is lost in the moment. Just keep pushing through, and you will be alright. Just keep pushing.* - A

We'll be Alright

At that point, I was feeling as though everything was so utterly hopeless. “I swear to God if you guys don't pull the picc line out I'll just pull it myself...,” I told the emergency room nurse. At that time, there was talk of the picc line possibly being infected. We (as in me, my mom and the team) really didn't know yet, but were grappling with a few different ideas as to what was wrong with me. However, having just come out of the hospital three days ago as an inpatient for my biggest infection thus far, it wasn't too hard to presume I was still healing.

Ultimately, that's all it was. My body was still incredibly dehydrated, and my blood pressure low. Eating was almost nonexistent as the nausea was too intense. The infected area still held a great deal of hurt. I was also still grappling with a clot that extended from the back of my ankle to my toes (and still am, unfortunately).

At that point in time, I would be lying if I said I wasn't suicidal because I absolutely was. “Do you struggle with depression, by any chance,” the ER nurse asked me. My holding room sheets and pillow were soaked from my relentless crying, and it seemed as though the tears massaging my face were limitless. Everything felt so incredibly deranged and hopeless, and the future seemed bleak at best.

It's not the first time I have felt like that; far from it, in fact. However, being sick just exasperates those feelings for me, so I have found. I'd be lying if I told you that each and every day wasn't some kind of an emotional struggle at present, although I do my best to hide it around many. It is, though, but I am still here and ultimately that's what counts. And I am still receiving help, even though that means continuously letting my guard down simultaneously to people, from those in which I know very well to those who are complete strangers. I know I am far from the only one who has gone through such a struggle; the reality is that it sucks, plain and simple. But if I had to give anyone advice, (who is in a similar situation) it would be to open up to the right people around you about how miserable you are feeling. Depression wants to isolate you from people, to have you keep your feelings internalized which only gives the illness more ammunition to hurt you. Speak up and seek help if needed and gain back the upper hand! Sometimes, I look up at the sky and clouds and realize that there is something out there much bigger than I, and that there are things happening to me for reasons in which I do not yet know, for reasons in which I am not yet meant to know. Keep up the fight, and in the end I think you'll see we will all, indeed, be alright. - A

Heartache

My problem is that I want to inflict good upon others but cannot effectively do so until I am in a place of wholeness and wellness myself. The journey to getting there seems to be intolerable, and I feel as though I am held captive in a pit of circumstances that are of my own doing. Those words are, indeed, important: my own doing. Depression will try to tell you that.. Tell you that all of the bad things that have happened to you are a result of your own unworthiness, and that you deserved for them to have happened to you.

Truth is, I didn't choose to be born with a debilitating illness that has plagued not only me but my loved ones. But, inside, there is a voice that tries to tell me maybe I did.

After 16 days in the hospital, I was released. I am far from well, but I felt I could handle the thunder on my own. Or maybe I didn't, maybe I just hoped against all odds. These past hospitalizations have caused me to miss so many significant days, like my mom's 50^th birthday. Do you know what my mom did on her 50^th birthday? She cried, and it was over me. That day I woke up in the hospital and got extremely sick with the worst cellulitis infection I've had thus far. I know there was chaos, and lots of medical staff, but that's not what sticks out in my mind; no, all I remember amongst the blurred vision from tears is seeing my mom cry. It stabs me in the heart. I missed my parent's anniversary and father's day, too. I don't care about my own satisfaction I just want to help others who have been victimized by my condition be well, to live as though it didn't exist.

So, I went home after 16 days inpatient. Not 18, 19, 20, but 16. And, I would do it all over again for my sister. I went home because yesterday was her birthday (and my dogs!). She kept saying she didn't care if she had a party, but I knew she did; she just may not have realized it. I only made a small appearance at her birthday, but I know she was happy and did have some much needed fun. Me being in the hospital, after all, greatly impacts her life too and she has been exposed to harsh realities younger than some of her peers. Even though I am sitting here in so much pain and feel so feeble, I would come home again a thousand times over for her and her happiness.

I just want to help everyone be happy.

The Quick Onset of My Infections

An example of how quickly my infections come on:

I am in my room putting on my makeup; I am not quite sure where I would head out to that night but the evening was young and so was I.

As I sit in front of the mirror primping myself and talking to my sister, I looked down at my foot and recognized a fiery red section of my skin. I felt a shot of adrenaline rush throughout the entirety of my body; here comes the anxiety. Most of us with KTS know the difference between the typical purple hues that are typical of normal KTS criteria as opposed to the crayola red ones. So, as I gazed at it, I am thinking this can go one of two ways: the skin will stay as is and no other symptoms will come along. Or, it would progress and I would be heading to the ER that night at Children's Hospital Boston.

Within the next hour or so, my current state of health declined exponentially. My foot was now in an incredible amount of pain, and I was deteriorating systemically. This was not atypical behavior of my cellulitis infections; most come on fast and strong. Mind you, this was all while being on oral Avelox for a prolonged period of time. I was taking it daily, and with that in mind no infection should have cropped up. Yet, it did, and next thing I know I was phoning my mom telling her that I needed to leave for the hospital as soon as possible.

And so we went. I was already depressed prior to going there, but once I was actually there and admitted I felt all the more horrid. I felt stuck in a repeating cycle that never seemed to end. It was as though I was spinning round and round on a merry-go-round and was powerless to get off. I know that I am not the only chronic illness patient that feels this way; I have talked to many others who feel similarly to I. Sometimes, you just have to be strong and push through despite whatever the odds may be, no matter how hopeless things may seem. I plan to write more tomorrow.

Are you a chronic illness patient? Do you ever feel stuck in "the cycle?" What advice would you offer to others going through the same thing?

Hope you are more than well, A

It's Okay to Seek Help

I am about to be incredibly blunt and speak my mind about a subject that has been brought up recently amongst some of my KT colleagues. The subject in which I am going to touch upon is that of chronic illness and depression/other mental illnesses. Now, there is no denying that the two are somewhat synonymous; there is ample research to support this claim. We are humans and we feel, if we didn't then we wouldn't be human. In fact, if someone came to me and said they have had 20 surgeries and deal with chronic pain on a daily basis but experience no negative emotions whatsoever, I would find that to be concerning... More concerning than if they came to me and said that sometimes they feel down and depressed. Why? After the body experiences a certain level of trauma, it is only natural to experience those kinds of negative feelings. Not to mention that chronic pain does impact the chemistry of the brain and can absolutely play a role in triggering depression/anxiety/etc. The good news, however, is that ample studies show that this damage can be reversed with proper treatment (cognitive behavioral therapy, for example).

Here is where it gets tricky, however. How do you decipher between an appropriate response to a chronic illness and actual mental illness? The lines can be incredibly blurry, and it can be confusing for even us ourselves to know the difference, not to mention our friends and loved ones. That is why I am not going to delve into the topic of possible medication for people experiencing pronounced symptoms of depression and anxiety in this post. I do not have the expertise to do so; I only have my own experiences to go off of and that can potentially be another story for another time.

All I know is this; there is no shame in seeking help, and cognitive behavioral therapy has been shown to be effective in a multitude of cases. Sometimes this is supplemented with medication, other times it is not (it is, of course, dependent upon the patient's specific case). Either way, it cannot hurt and can only benefit the person seeking help. We live our lives as best as possible, but the abnormality we face due to our condition does indeed impact us. Everything within our environment impacts us, and sometimes we need an unbiased source to give us guided, professional advice.

There is no shame in seeking help or talking to somebody. Everything I wrote above stems from my experiences/own views/research but I understand I still have a great deal to learn in regards to chronic illness and deciphering between an appropriate response and mental illness. Feel free to weigh in with your own views in the comment section, I would love to read them! As a future psychologist, reading this stuff is like candy for me ( : ! - A

The Ugly Truth

I am home which is so utterly fantastic, but I still feel kind of crummy overall. Emotionally, I don't really feel as though I have the social support I need present. Virtually, I DO and I am so grateful for that, don't get me wrong! In fact I have no idea how I would carry on without my KTS friends and family on a daily basis. While I love getting to talk to them on here, sometimes I wish that they could actually, well, be here. “Normal” kids my age just don't understand, and it can be really hard to cope with. Sometimes, my friends from around here don't even acknowledge my hospitalizations when they find out about them which can be hurtful. I think they're not sure how to approach the situation, or they are scared that they won't know what to say. Others are just too busy going about their own lives, and it makes me upset because I feel as though I am missing out on living a productive life. Pretty much all of my closest friends from home have their own major life events happening that they need to focus on, and I fully respect that. Sometimes, though, it gets lonely and it's a tough pill to swallow. - A

My last post was not just seemingly trite song lyrics, in fact they hold profound meaning to me in several ways pertaining to my life with illnesses. Note I said illnesses, not just Klippel-Trenaunay Syndrome. However, to prevent this post from turning into a short novel, I will just focus on the KTS aspect.

My younger college years were when my pain was at an ultimate high. I couldn't go anywhere without my stocking without experiencing a momentous amount of pain. Even with the stocking, the pain was just barely tolerable, if that. Somedays, it seemed as though there was no hope. During this time, we were trying to find a multipurpose way of treating the pain, which included surgeries and medicines. Nothing was working, which just added to my feelings of hopelessness and discontentment. 

This one time, I took a trip to Miami, Florida with my grandparents, mom, and sister. I was so elated to be in Florida (one of my favorite places), not to mention that we were going to South Beach. When we got there, we walked around for a bit exploring the oceanic surroundings (it was too cold to actually go in the water). We took some photographs, and just breathed in the beautiful air for some time. At that point, my lower leg was killing me. It hurt so incredibly bad and I just wanted off of it; actually, I needed off of it. We walked back to the car, and only then did my mom express her desire to go look around the shops. Then came my verbal tirade. “You're so fucking selfish, seriously.” I said that among many other harsh things, because clearly, she was supposed to know how exactly my leg was feeling (note the sarcasm, if you haven't already).

These verbal tirades were not exclusive to Miami, either. They happened at anywhere my leg was killing me (think mall, scenic trips). The pain was just so mind-boggling and overwhelming that I couldn't think of anything else. And this was often with the stocking, too. In the past year I have found Meloxicam (a painkiller with virtually no side effects) and it has changed my outside-of-the house persona a great deal. I love exploring now! But I think of the hell I mainly put my mom through for those couple of years. Sometimes I would force her to give me an arm while out and about because I couldn't do it on my own (and she always generously complied). Other times, while at the mall, there was a wheel-chair involved and she would always push me.

Not everyone would have put up with my tantrums, tantrums stemming mainly from pain at that point in time. But she did, and she still did whatever she could to keep me comfortable. The thing about the pain was this: when I was in such a high velocity of it, I could only see the discomfort and not beyond. The pain was just too consuming (albeit I am not making excuses for myself, either). But it's not easy. All your mind can think about is slowing down or easing the mind-numbing pain. Then, after, when the pain did die down, I would feel so utterly guilty about how I had spoken/acted. It was a vicious cycle, indeed, and not a healthy one at that.

I look back and sometimes wonder how she didn't just completely snap back at me...I don't think she ever did. Somedays, I quite frankly would have strangled my not so gracious self.

Happy Mother's Day Mom & thank you,

Arianna

& you all thought those song lyrics below were just to take up space ; )