I needed a bit of a change, so I highlighted my hair the other night. I'm really liking it for right now! I also tried on some summer dresses and went shopping with my sister and had so much fun.

Hope you all are healthy and happy! - A

Ever feel like you just don't belong? Like the feelings of dissimilarity go beneath the skin and latch onto something much more abysmal? Every now and then, I feel that way. Perhaps going to a sports orientated school wasn't the best decision for me; most of the student population are involved with sports, and overall, there is not much diversity (however, the school is working on building a more assorted student population). I really like the school, and it is fantastic for academics, but I don't necessarily feel as though I fit in as most of the girls and guys know each other through sports teams and what not.

Today, at a mandatory school event, I looked around at all of the girls in their short skirts, high heels and dresses and felt just as out of place as ever. It seemed like everyone else was carefree and having fun while I just couldn't relinquish my feelings of jealousy. I'm not even sure jealousy is the right word, but more like a general longing for something I'll never have. It probably didn't help matters much that I attempted to shop for some jeans yesterday and failed greatly.

I'll never have had the pleasure of getting to play sports throughout my younger years, and I'll never know what it's like to prance around campus in a short skirt without prominent stares from my fellow colleagues. I'll never know what it's like to live a day of life without the condition present.

I think I always have these feelings (to an extent) year round, but the seasonal transition into summer just exasperates them beyond belief (on certain days).

From my experience, the best thing you can do is allow yourself to feel the emotions. Don't try to deny their existence, for internalizing such thoughts can lead to depression and other mental disorders later on in life. I think the key is to feel the emotions, but not get stuck on them for so long that you cannot move beyond them. Allow yourself to acknowledge their presence and to feel them, then move on. Once you have felt your emotions, you can remind yourself of all your blessings and start to really appreciate them. However, in my experience, if you skip the step of genuinely dealing with the emotions, then you will have a hard time appreciating anything at all.

Thoughts? - A

"I realize mistakes I have made, the things I really regret, were not errors of judgement but failures of feeling.”

XO - A

Fitting In

This is a relatively interesting time in my life in regards to the social aspect. I feel like I lost my teenaged years to this illness, and that I didn't really get to experience life in terms of a “normal teenager.” I have come to find that I greatly resent that, although my teenaged-years did make me a stronger person overall. I wouldn't necessarily want to give that up, but I cannot help but feel as though I missed out in some major way. It's especially hard seeing your younger sister live out the high school years that you yourself thought would have – but didn't. I got pieces of high school social life here and there, but in its entirety nothing that compares to other people.

Even now, it's hard for me to go out with mental health issues and my KTS. Still, I have been trying to make more of an effort, and for the most part when I do go out, I am happy. Before the chronic pain, infections, and clots, I was undeniably a social person. However, as the years went on, I became somewhat of an introvert.

Like I said the paragraph before, when I do go out, I am mostly happy. This isn't always the case though, and usually my happiness is accompanied by a feeling of not really belonging. I sometimes feel too adult for the shenanigans SOME other people my age engage in. Yet, I'm not quite ready to live my life as a 40-year-old woman, so to speak.

It's an extremely weird place to be in, and I think perhaps someday I'll have things figured out. Still, I want your thoughts on this! Can you relate at all? How did you cope? Any comments would be greatly appreciated. - A

Scathing Words

Let me tell you a story about an angry and confused 16-year-old girl who lashed out at those closest to her during a time of her life in which she experienced daily entropy.

“I hate you, you're such a failure!” Pretty scathing words, right? Now I am about to add insult to injury and tell you that those were words I spoke to my father; yes, my own father.

Many of you who are familiar with my story know the basics. For those who don't, I'll provide a short and simple recap. I was diagnosed with KTS at birth and had multiple surgeries growing up. I was not a severe case, but my KTS impacted me enough to have a vital impact on my childhood. Along with the surgeries, I would experience blood clots. Middle school, other than the occasional blood clot, was smooth sailing. Then came the week prior to high school when I got my first major cellulits infection (I hadn't had one since I was a baby). Just like that, my world was transformed and I was scuffled in and out of the hospital for recurrent infections. Also at that time, I developed chronic pain in my expanding lower left leg. Size wise, it was growing larger; it was a gradual change, but nonetheless a radical one in the span of a few years. I had all of these growths growing in places that were less than lovely to talk about; Dr. Fishman would refer to them as lymphatic vesicles  Aside from all this, I had a Dr. secretly talk to my parents about amputation, so we were all somewhat on edge. So, that is the situation in which I found myself at sixteen.

When I was home from the hospital (in-between infections), I found myself verbally lashing out at those closest to me. However, my dad was mostly the one who received my verbal wrath. Not to say that others didn't too, like my mom. In retrospect, it was mainly my parents I took my frustration out on. Sometimes, in the hospital, I could not leave my minuscule room for 5 or 6 days at a time because of MRSA testing. I felt trapped, and with that came anger and frustration.

When I was home, I was constantly trying to balance two lives: my medical one, and my high school one. The high school life in which I tried to maintain included Abercrombie and Hollister everything. I was spoiled, but as all of this was going on, money was tight. As many KT parents can probably relate, the amount of money spent on doctors and hospitalizations is outrageous. Most of the time, I got what I wanted, whether it was highlighted hair or $70.00 jeans. My parents were struggling financially, but doing their best to give their sick child what she desired. I was too naive at the time to see things for what they really were.

What were things, exactly? Well, I had a dad working 3 jobs and a mom working 2. One of my dad's jobs entailed him getting up at 2am as a manager for UPS. He went there solely because of the health insurance benefits for me. What I didn't know, up until a short while ago, is that my parents had spent their life savings on my medical bills. Up until I was about 11 or 12, my dad was on an insurance in which he had to pay 20% of all my medical bills. Insurance would only cover the other 80%. With all the surgeries and doctors appointments I had throughout the years, that money went fast.

So, I look back at all those times now in which I lashed out at my dad for not having enough money to give me exactly what I wanted and cannot help but think what a spoiled brat. And the truth is, in many ways I was! But, my anger and frustration was not truly at my dad, nor my mom. It was a matter of displacement of my emotions, and I didn't realize deep down that I was really upset about the medical issues going on around me. Sometimes, I still verbally lash out at my parents. I am so incredibly far from perfect, and my anger can get the best of me. Just the other day in the hospital I got incredibly angry at my mom because she wanted to get me food from the cafeteria and I did not want to eat despite not eating for a while. I literally felt anger spread throughout every crevice in my body.

I think what's truly important is to realize where my anger is stemming from, and years of talk therapy have helped me with that. I am still a work in progress but I have learned so much. Aside from cognitive techniques, I've learned just how much my parents sacrificed throughout the years to give me the life I have now. With that being said, today is my dad's birthday. My dad has done everything in his power to keep me alive and get me the best medical care possible. Aside from that, he's been a genuine friend to me (not to say we never fight, because we do have our disagreements). Still, he always tells me what's important is that “we agree on more than we disagree on.” I can't argue with that. And as annoyed as I get with my parents at times, they're not just my mom and dad, they're my friends and I appreciate them so.

Happy birthday Dad, and thanks for everything you have done for me throughout the years. I look forward to being able to give back to you in the future. - A

AWARENESS NEEDED

Earlier today, the KT Foundation posted the following as their status:

"Doctors' lack of knowledge leads to KT patient frustration too often. Share this story. Share this page. Get involved. We shouldn't hear stories like these in 2013.

'I'm so sick of doctors not understanding my KT and teaching them about it. Every time I even say "I have KTS"
and explain it to them..I get that look..like..whaaaaa?? Then while I'm explaining I get the next look like "oh" and then the tears start falling down my face. I'm so sick of explaining. Plus I'm pregnant and now it's even more complicated. When will doctors learn about this?'"

Photo courtesy of KT Foundation

Thank you to the KT Foundation for all in which you are doing to garner awareness for this rare condition.

Update 2 on Sepsis

This infection has taken so much out of me; when I stand, I feel like I need to sit down because I am so fatigued. I am incredibly thirsty all of the time so I am constantly drinking fluids. Aside from that, the area is still somewhat sore. I still have ways to go before reaching my baseline, but I am so much better than I initially was in the hospital, so I'm grateful for that.

I've come a long way since the hospital

I still have to monitor my temperature a lot despite being on Avelox 400 mg daily (for a grand total of three weeks). The reason for this is to make sure I am not breaking through the medicine. So far I have remained lucky and my temperature has remained at baseline.

I woke up today to find out about the horrific tragedy that happened approximately 30 minutes from my house, the Boston Marathon bombings. To all injured and impacted, my deepest condolences. Boston is a strong city with the best hospitals, so at least the injured were close to the best care possible. Still, I cannot even imagine having been impacted by such a horrible ordeal. May we all keep the victims in our thoughts and prayers.

Update: Recovering from Sepsis

So infectious diseases said I had sepsis. That word scares me a lot, and I don't think I've actually met that criteria since I was much younger. To think that my own body turned on me so incredibly fast is just mind-blowing – I've had intense cellulitis infections, but systemically, nothing of this caliber. As for right now, I am kind of stuck in that “in-between” phase, the one where I am loads better than I was but also still far from my baseline. A lot of people showed me love and support though and for that I am very much so appreciative.

My mom (as usual) took care of me like no one else when I was at my neediest and I try to never let that stuff be forgotten in my healthier times.

Mentally, I feel a wreck as this hospitalization has drove a major wench into my semester at school. I was in an amazing groove and then it feels like all of the bricks just came tumbling down. There's only three weeks left in the semester, so there's not a ton of time to get back on track if I plan to finish.

For now, I am going to attempt to relax. But there's still so much more in which I want to write, but I want to pace it out a bit so it's not all one mangled mess on here. - A

Me being goofy the other day

So tomorrow is probably the day I get to go home! I was being treated as though I had sepsis because of how severe my symptoms presented in the emergency room. I've been hospitalized several times in the past for cellulitis, but I cannot say that any two of my infections have been exactly the same. This was definitely one of my worser ones, but I am responding beautifully to the antibiotics I've been on. I am on oral Avelox now, but I was on IV Avelox and IV Vancomycin for the past three days.

I always get slightly wary when the doctors take me off the IV after just a couple of days or so because of my troubled past with oral antibiotics. Avelox usually does the trick though. Systemically I am doing much better and my pain is at a minimum. I will write more soon, hope you all are well. - A

This was taken with my lousy blackberry camera and does not depict the redness well.
It was more of a Crayola red than that of a purplish hue.

Once all the tyenol was in me in the emergency room and they had begun to stabilize me!

Dr. Ari's in the house!

Hospital

Hey guys! Right now I am in the hospital for a cellulitis infection. Out of all the infections I've had, this has been one of the more serious ones. Systemically, I got sicker than usual. When the infection was initially coming on, it felt as though my body was being smothered in ice cubes. I was so cold I couldn't take it! My body was shaking uncontrollably and no amount of blankets/heat seemed to help.

I'll write more later, but just wanted to check in for now. My condition is stabilized and the infection is responding to two different IV medications. - A

"I don't want to turn this into a trite sermon on the passing of time, but..."

I think that when one lives with a certain degree of chronic pain and medical trauma on a daily basis, it can be somewhat easy to fall into our own worlds. In fact, one could argue that focusing on ourselves and our health is somewhat of a primal tactic – a “survival of the fittest method”, so to speak. We focus on getting by from day to day, and don't always realize how quickly time is actually passing. When in the moment, it may actually feel as though the clock is barely ticking. I can't generalize this to all people or patients, of course. This passage is mostly tailored to myself, but I have a feeling one or two people out there may be able to relate. I don't want to turn this into a trite sermon on the passing of time, but tomorrow my sister receives Confirmation. And, this past Friday was her first prom. It's so weird watching her do the things I did not to long ago myself – and it makes me realize that in spite of how slow it may feel life is dragging sometimes, it goes by faster than which I give it credit for.

I think the beauty and heartache of getting older is coming to certain realizations, like realizing that days do seemingly go by in small clusters and eventually you find yourself reminiscing on the past ten years. I'm not good at living in the moment – in fact I am utterly horrific at it! My anxious mind likes to pull me forward constantly, and my depressed one likes to keep me stuck in some gaudy time machine. And I also understand how pain can preoccupy the mind immensely. But living in the moment is worth a try, and that is why I hope to improve upon this subject.

Sister & I

Scattered Thoughs

Each day I wake up and wonder what my journey and purpose will be throughout this fleeting lifetime of mine. I was born different, but wasn't everybody in some capacity? Does my chronic illness being so rare mean that I was born especially different? I think one could argue yes, but it is vital to also acknowledge that we are all created unique within our own ways tailored by a higher power of some sort.

Still, having been born with such a rare illness, do I have some obligation to garner awareness for it? Do I want this to become a part of my ever-evolving self-identity? These are questions in which flow throughout my stream of consciousness on a daily basis.

Ever since I was little, I held on to minute matters and recollections more than the average person would have. Seeing as that last sentence is ever so vague, I will gladly expand on it. For example, I still cannot erase the image of the obese black homeless man I passed on the streets during that snowing, freezing Boston night. It was several years back, but I'm still bothered. He was bundled up in a jacket, and what little possessions he had lay beside him on the worn street. My heart was torn into a million little pieces at that moment. And, when I look back, it still is. That's was someone's son, someone's brother out there struggling to maintain even the slightest amount of warmth through his garment. I took a quick glance at his tired face, and saw the look of utter

defeat within his pain-stricken

eyes. People continuously try to rationalize his misfortune to me, saying that he was probably a druggie or drunk of some sort who couldn't hold down a job. It didn't matter to me, human suffering was human suffering and I felt so inconsolable that I couldn't change his circumstances at that point in time.

I have an array of heart-breaking memories just like that one dating back to my childhood. Just normal instances for some people in which they might not have thought twice about, but nonetheless sad memories within my eyes.

I think that haven been given such a large heart and rare illness, I was born to make a difference. As those of you who know me or my writings on here may already know, I am passionate about helping those with mental illness as I suffer from those as well.

This is a confusing time in my life. I still live at home with mom and dad but crave an independence that is not attainable to me at this point in time. I still don't know who I am, and am slowly learning who I want to be. I guess the one constant I have maintained within my desires is to make a difference, and so I will continue to embark upon that journey.

Wishing you much peace and love,

Arianna

In Addition to the Last Post...

I want to add a note to the last post I did, in which I claimed I had an easier time dealing with my KTS than my mental disorders.

1) I was born into Klippel-Trenaunay Syndrome. I have not known life without it, and while it has progressed over the years, I am always going to be accustomed to some variation of it.
2) Depression was something in which I did not experience until my late teens. I've dealt with a moderate level of anxiety the entirety of my life but it did not get extreme until my late teens as well. Therefore, when I say dealing with these mental disorders are more difficult than dealing with my KTS, I must acknowledge that these disorders onset have been more recent in some respects. I have not had as much time to cope, and perhaps over time I will not find these disorders to be so fatiguing in my daily life within the future.

I took some pictures on Easter and was surprised to see how good my KTS looked within them. See for yourself below. - A

What's Harder for Me, Bipolar or KTS?

I hope everyone had a lovely Easter! As far as my KTS is concerned, I am in a good place at this point in time. Not to say everything is perfect, but the positive is far outweighing any negative.

For me, though, the KTS portion of my life has been considerably easier to deal with than any mental problems I have experienced throughout the past few years.

When I get a cellultis infection,I go to the doctors and it's up to them to fix me. It's up to them to find the right antibiotic to sliver through my body and wipe away all traces of the infection as thoroughly as possible. A nurse hooks up my IV and lets the fluid work its magic. Within a couple of weeks, the problem is usually solved and I can revert to a normal physical state leg wise.

However, as someone who deals with bipolar disorder and a high level of anxiety on a daily basis, I cannot help but find these mental disorders much more complex than that of my KTS. Perhaps because controlling my moods has been somewhat of an issue, and it requires a great deal of cognitive work on my part. If I don't practice good cognitive techniques, along with attending weekly appointments and taking medications, things can go awry rather quickly.

My KTS and bipolar disease do have things in common, though. For example, with my KTS I can wake up to an infection or clot and then be forced to deal with it. Same with bipolar disorder, I have found. I can be in a good mood and then fall into a lousy bout the next day and be forced to deal with that.

All I know at current is this: You wake up each day and just place one foot in front of the other. Sometimes it's just going through the motions, but that's okay because it gets you through temporarily.

I know I am far from the only one who deal with a chronic illness and some kind of mental disorder - and my heart goes out to all of you. It is not easy and definitely not fun - you guys are warriors! It's true, and don't doubt it for even a slight second. - A