The first ever K-T Brazil meeting. What a beautiful thing and beautiful people! You guys all rock : ) - A

If there's any justice...

Sometimes I get saddened by my own condition; it's not my intention to throw a pity fest, but internalizing your feelings too much can have negative effects on one's emotional being. Want to hear a secret (or non-secret depending upon how well you know me)? I don't consider myself deeply religious, or religious, by any means whatsoever. However, I do sometimes like to imagine there is a heaven in which I am running around in a large open beautiful space, and all of my physical and emotional pain is no longer existent. It makes me upset to type such as I've never had this. I've had great fortune in life and countless blessings, but I've never genuinely had this. To some extent, I've always had physical pain. Now, with the emotional pain in recent years, it makes me feel as though I am fighting two separate wars and each present daily challenges. That's life, though; you wake up each day and try your best each and every single day. Even if you failed, you tried your hardest and that is all in which you can do in life I suppose. You force yourself to get out of bed and shower and take a trip to somewhere like CVS to get a medication and call that progress. Mind you, for some that's just a menial errand, but for me, some-days that qualifies as progress.

I just like to imagine a day where I am free from pain, and I've heard others say that heaven wipes away all pain and restores us to our most vibrant, healthy selves. I pray this is true. Not just for me, but for all of us. We all have our own problems with pain, whether they be physical or emotional. Life can be so utterly cruel, we all deserve to be alleviated with the baggage that followed us through life.

I can never think about this particular topic, however, without thinking of Michael Politzer. If such a place exists, which I truly hope and want to believe it does, I know he is living his life in a way he could not here on earth. I like to imagine him running in a park somewhere, smiling and laughing. I miss hearing his voice. If there is any justice in this world, he is carefree of all the pain that burdened him while here on earth. - 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

"If there's a crisis, you don't freeze, you move forward. You get the rest of us to move forward because you've seen worse, you've survived worse. And you know we'll survive too. You say you're all dark and twisty, it's not a flaw, it's a strength. It makes you who you are."
-Derek Shepherd 

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

Let's talk about how much I utterly adore Dr. Fishman from Children's Hospital Boston. He just left my room a few minutes ago and I cannot help but feel incredibly beholden by him. He knows his material, and his display of confidence but lack of cockiness is quite appealing when it comes to discussing elaborate medical procedures. As the team of doctor's were leaving my room, I was sure to thank all of them profusely. Then, however, came my farewell to Dr. Fishman. "Dr. Fishman," I said, "never a pleasure." We all laughed. He knows I am absolutely kidding, and that I am very grateful for all of the work and care in which he has provided for me throughout the years. I love that I can banter back and forth with each and everyone of my doctors! When you have known them for so long, they become friendly familiar faces in a strange way, Ultimately, though, he knows I am grateful for his expertise and the time and work he has dedicated to me as a patient.
 By the way, in case you were wondering, he does not have a house in the Hamptons to kick back at during the summer season; I would know because I already asked to swim in the pool. ; ) Overstepping boundaries much? Yeah, well, I'm notorious for that. Not that a man of his magnitude would even have the time for that. During my last hospital stay, he showed me the quantity of emails he had received via phone since the ten minutes he had been in my room. There had to have been at least 40, no lie. I don't know how he does it, but he does it and he does it well. Not only does he manage work, but he has a wife and two children.

I should get to go home tomorrow. This does not surprise me in the least bit as this infection was quite tame from the start. Systemic symptoms were minimal, as was the pain. The cardinal symptom was indeed the redness in the lower left limb. However, I came to the emergency room shortly after noticing the redness so there was little time for the infection to progress into a more developed stage. With potential infections, you NEVER want to wait around. Supposedly, as recited at a presentation at the conference in Mayo Clinic this past summer, somebody died because he waited too long to get help for the infection.

I'll write more later because I am so fatigued right now as I got no sleep last night. -A

Room view from the kitchen

I'm writing this from the emergency room at CHB because of cellulitis. Systemically, I am nothing like my last infection (thankfully). I actually "discovered" this infection while in the shower...I look and all of a sudden I see a red area on the lower portion of my leg. 10 minutes later, still there. Shower stopped. & Well, that's basically how/why I am here.

The ER was so busy when we first got here!

 Supposedly a room is ready in 10NW so we should be leaving the emergency room soon. Everyone has been so nice and I love not having to explain what KTS is (like some of my other KTS colleagues). I feel for my colleagues who have to try to explain their condition while getting better simultaneously.... I don't know how they do it. I will not be here long because of how calm in nature this infection is. Hope you all are well. - A

P.S. They are expanding the emergency room area here to include more rooms (finally)!

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 ; )

So please don't judge me
And I won't judge you
Cause it could get ugly
Before it gets beautiful
Please don't judge me
And I won't judge you
And if you love me
Then let it be beautiful
Let it be beautifu-u-ul, let it be beautiful
Let it be beautifu-u-ul, let it be beautiful

Rain

The raindrops, I'm convinced they are heaven sent, that they are heaven's angels' way of telling us. Telling us what, you may ask? Telling us to feel. No one seems to be getting it though, the message is lost in transient. Location: Longwood Ave in Boston when a path of rain presents itself amongst those present. One gentlewoman agitatedly pulls out her umbrella, clearly inconvenienced by the impromptu shower. One hollowed man wrestles with his stubborn zipper, trying with all his might to get it to obey his orders. Others hover in masses under brick shelters, not wanting to get wet. Very understandable, I've been there myself. In a looks orientated world, us girls don't want our hair and makeup we so defiantly worked on that morning to come undone due to some sporadic raindrops! Others, well others simply don't want to feel the unpleasantness that the cold, wet raindrops impart upon their skin.

However, I challenge you to let a raindrop soak into your skin sometime or other. To do so, one must use the practice of mindfulness (a concept in which I suggest everyone read up on). Let the rain seep into your skin, and continue to linger within you. Allow the rain to make an impact, to allow it to allow you to do something drastic: feel. Feel, with every inch of your body and relish in the fact you are alive, blocking out all other potential distractions. Despite your hardships, let the rain serve as a trusty reminder that you are here and for good reason.

So often, we run from the rain. In all fairness, though, it's just there to remind us we are alive; it reminds us we are beings on this earth who are here for short inklings of time. Rain; when is the last time you've felt it?  - A

"Enjoy the little things, for one day you may look back and realize they were the big things."

Yesterday was my older sister's birthday. I'm not going to lie, we've had our issues over the years. Some say that all sister relationships are complicated, but when chronic illness is part of the equation, relationships can become all the more, well, trickier.

I want to say this, though; don't forget to treasure the time you spend with one another while young as life does go by too fast. It's truly hard to fathom that just yesterday we were just kids playing outside on hot summer days and now we are all grown up.

Want to hear a cute sister memory? During summertime, when I was six, I had one of my debulking surgeries. It was a whole ordeal as it was the one in which something went terribly wrong and my organs started to shut down. That aside, recovery was treacherous as well. When I was able to leave the hospital after weeks time, I was home and had nurses that periodically had to come and change my wrappings and what not. I recall the yucky fluid iron medicine I had to take every day.

Anyways, I could have just paraphrased that all and said things were rough, and I hated being trapped indoors during the summertime. However, I had an older sister that would wheel me and all my stuffed animals around the neighborhood on scorching summer days, I don't think I even had to ask her. She could have chosen to do whatever she wanted with that time, but she happily caroused me from house to house and made me a very happy little girl.

Memories like that are the ones that I keep stored deeply within my soul. They helped shape the person I am today and I wish that I could go back to then for even just a moment.

I don't always succeed at this, believe me, but share love and cherish joy. - A

Here is what I posted as my FB status earlier: - A

Pretty unhappy that today is the first day off my antibiotic since sepsis. Normally they would keep a Klippel patient prone to infections on a small dosage of antibiotics every day to keep them from forming but I can't be because I'm allergic to so many antibiotics already. I remember pleading with ID (a few weeks ago) and they kept saying its not even a possibility to keep me on a low daily dosage. But now I'm back to living with the anxiety of getting another infection each and every hour. For all I know I could be good for a year but it doesn't really matter because I won't be able to help but worry anyhow. 

Flashback pictures from one of my debulking surgeries. How far I have come! : ) Much love to every nurse, doctor, friend, patient and family who have gotten me through the years. - A

Hey everyone,
I am currently writing this while absolutely exhausted; it is nearly 2 am and I am still studying for a major test I have to be up for in the morning. I have so much schoolwork to do in these next couple of days I don't even know where to begin! Since I was hospitalized about three weeks ago and missed two weeks of school, I have been completely overwhelmed by the work I have missed.

Still, I want to say that school is utterly important and that while nights like these absolutely suck, THEY ARE IMPORTANT. I always advocate that anyone who is physically able to do so does some form of school so they have their degree and thus more career options in the future. Juggling KTS, depression, anxiety is hard work, that much I cannot deny. But, in the end all, I believe it will be worth it.

-A