It's my life 
And I'm not sitting on the sidelines watching it 
Pass me by
I'm leaving you my legacy
I gotta make my mark
I gotta run it hard
I want you to remember me
I'm leaving my fingerprints




I'm leaving my fingerprints

This is not an image of mine. It is one I found of a website that resonated deeply within me. Hopefully, it will inspire you as it did me. Have a lovely day xoxo - Arianna

It's Not All Bad, You Know

Often, when I write on here, I think about the audience in which I am speaking to. I know there are moms and dads of KTS patients, and younger KTS patients as well who read some of my writings. Lately, it's been pretty dismal on here, for which I am partially responsible... Yes, life circumstance plays a role, undoubtedly, but it's also what we make of it.
For that reason, even though I am going through a tough time, I found it worthy to dedicate a post to some of my happier times! Also, it's important for me to mention that there have been countless heaps of happier times, even with this condition! Right now I am in somewhat of a low place with it, but like everything else in life, there are good and bad times. Just because you or your child may have been born with such a rare, manipulative syndrome does not mean all is lost - BY ANY MEANS. So, my sincerest apologies if I have been making things seem that way at all. It's like the saying that goes: If you want the sunshine, you have to put up with the rain. ( =

 Below, see me in some happy moments!

This night was a lot of fun. Some of my friends and I took a limo into Boston and went out for the night! 

As you can see, I am rather young here, but I always have the fondest memories of being young and doing things with my family! Here is my sister Danielle and I (I am not sure what amusement park we are at).

My sister and I used to have so much fun playing outdoors when we were younger! We always loved our Barbie Jeep, it was far better than any technology in which young kids engage in today! There is nothing like fresh air and a good time.

Here I am in high school (I believe it was 11th grade) during Spirit Week with my friend Kaitlyn. It was always so much fun to dress up and get silly.

Meeting some of my KT family last summer. This really was such a groundbreaking trip for me in many ways...I met the kindest of kind souls... This picture, in particular, is bittersweet because it was the last day of the meeting and we had to say goodbye to each other soon thereafter.

On vacation in Florida! I am a huge Florida fan, and always get such a happy vibe whenever I am there. Here, I am at one of the Disney amusement parks on a rented scooter. My grandparents, mom, and younger sister were also there. It was an absolute blast, and I was so happy to get away from Boston for a bit. The trip took place during one of the later winter months, and I was so happy to escape from the snow back at home!

This is when I went apple-picking with my family a few years back. You can see my sister to the outer left of this picture; we always have a lot of fun together. It's nice when you truly get caught up in a moment so much so that you don't even realize a picture is being taken!

This is me with my amazing best friend Fe June in Boston! She has been the best friend/sister I could have asked for in sickness and health. She is every bit as lovable to me as any human being, and I am so thankful she came into my life! I find Boston Commons to be such a peaceful atmosphere, so it was great to spend some quality time with my pal there. 

This is me in the Aruba ocean with my sister Alyssa! Vacationing in Aruba always brings back the fondest of memories, and it's a great chance to escape from home for a bit and forget about some daily stressors.

Here are my sisters and I before our flight to Aruba when I was in eighth grade! It was so early in the morning, but we were so elated to be going on vacation. I still remember getting into our car when it was dark out and what song was playing on the radio! Such a great time overall.


Bam!  & there you have it ( : That's all for now - A

My Sincerest Plea

Dear Lord,

I am guilty of calling upon your name in my time of need more often than in my time of bliss, something in which I am trying to work on with great intent. My relationship with you has not always been the strongest, and I have not always been a believer, so to speak. While I “believe” now, I am not quite sure I believe in the traditional Catholic sense in which I was raised to believe... I do, however, acknowledge quite humbly that there is something out there, a deity of some sort, that is beyond me and mortals in general; there has to be, I mean doesn't there? I don't really question it anymore, to be entirely honest. When I stare at vast landscapes or witness the many contradictions in which this tumultuous, radical world of ours has to offer (think miracles and kind treatment versus brutality), I am rather certain there is an entity that holds unspeakable power and knowledge... I do at this point in time believe there are things in which us mere mortals are not meant to understand during this lifetime... anyhow, I am calling upon you now. Please restore me back to health and vigor, a state of bliss in which I have not been able to endure for several months now. I still feel quite horrid from my last infection despite this new “groundbreaking” medicine we have tricked my body into accepting... I feel rather out of my league here. If it I not one thing, it surely seems to be another like my infected arm, chronic KTS pain or anxiety and depression... At times, the burden feels too strong and I fear I wasn't meant to be a survivor, though in previous times I always thought of myself as one. It's not just myself in which I am asking for, but for my family and friends, too. I watch them watch me and see the deep emotional suffering it causes them, and I am powerless to stop it...

There is so much in which I want to do, so many people in which I want to help, and I cannot fulfill these duties from my bed... Please return me to health so I can not only resume my own daily schedule, but help others in a way in which I know I was always meant to. I was put here to help, and I am of no use to anybody while unable to help myself. Please grant me the gift of good health once again, and let the your sun's rays illuminate my fatigued soul once again. This is my public plea of sincerity... but not only for myself. There is so much suffering amongst others out there; how horrid would I be not to mention that of my KT brothers and sisters, at the very least? Some of them have suffered in the same manner, if not much worse... may you grant them the gift of restored health and a happy state of mind... The suffering in which this disease is causing me and my colleagues is so rampant at this point in time, please, whoever and wherever you are, grant us a break, and let us begin to heal as a community so we can help others...

Signed,

Desperate

The Morning Sunlight

There are certain things you just can't prepare how to react to; it's not stuff you are taught in school or the homestead... nobody could have prepared me for being lifted out of my house into a stretcher and rushed into Boston, even had I known it was coming prior. I recall that on my way out, the morning summer sun shone into my own half shut tired eyes, it met my gaze straightforward. I saw something beautiful when it did, it was as though hope had taken on a physical form, and it was speaking to me in the gentlest of ways. The morning sunlight, in all its flamboyance, was there to tell me it would all be okay, no matter what happened from that point forward. The morning sunlight, so it seems, entranced me into its spell and captured my soul...it was something sublime...

In A Moment's Notice (Part 1)

When I last wrote, things were seemingly getting better; albeit slowly. Still, everything was being managed just fine and the infection appeared to be responding well to intravenous treatment of antibiotic. Then, I woke up (while still inpatient) with the chills; it was previously planned I would go home that day... prior to the events that were unfolding at a moment's notice. Suddenly, without even the slightest of warning, I was wandering the vast mountains of Antarctica in nothing but a tank top and shorts. There were not enough blankets in the world to contain the numbing cold that occupied every crevice of my body. My temperature shot up to just under 104. It seemed the infection had progressed, and there was certainly no question now that it had entered my bloodstream. The usual people were involved in treating me, including Dr. Fishman, Dr. Alomari, infectious diseases and the allergists.

The next few days were utter hell as we fought to control the infection. I couldn't get out of bed to use the bathroom; when I stood up, it felt as though I was in a wind-tunnel. Standing would simply not suffice, for I could not maintain balance of any sort. Bed pans were a staple throughout this time period. Even getting my shivering body up on the bed pan was a challenge in itself, especially given where the infection was located (my back thigh). My energy was tossed completely, and lifting my head was something that seemed to be a tremendous feat.

The only time I would start to feel any relief was when the oxicodone, morphine,and moltrin were administered and started to kick in. Eventually, though, my fever would progress back to its just under 104 state, and the unrelenting chills would return along with the dizziness, nausea, intense headache, all over achi-ness, etc. Not to mention the thigh infection itself... My body wasn't done surprising me yet, however. I woke up the following day with two huge clots, one in each arm. They as well were infected. I wish I was joking. No doctor had ever seen anything like it before and are still having difficulty grasping the concept of how this may have occurred.

When people see my leg, they think it is just my leg that is impacted by this lovely condition we call Klippel-Trenaunay Syndrome. Fair enough, but for those of us who know better, we know that is far from the truth. We know it can get into our bloodstream and cause sepsis, travel to other realms of the body and wreak utter havoc. We know better, unfortunately.

I returned home from the hospital yesterday afternoon and will be writing a lot more about my time during my ten day stay. My KTS family as always pulled through for me and were the most incredible support group I could have asked for. Never could I have imagined people with such endearing hearts and souls being there for me day and night, that which I am incredibly grateful for. Think of this as somewhat of an introductory post.

My KT loves, whether you are a family member of a patient or a patient yourself, may you be at peace right now. If you are not, may your pain soon subside. May you know you are not alone and have a bundle of people in your corner at all times, no matter how isolated you may feel from the outside world at any given moment.

Love always,

Arianna

"Shady's Back, Tell A Friend"

A hate-love relationship; we all have them, whether it's with a person, food, place, etc. Mine just happens to be with Children's Hospital Boston. Here is where I have grown tremendously in a spiritual sense and been saved in a physical one, yet suffered the most gruesome pain imaginable to me. As weird as it sounds, I have fond memories here, mostly stemming from my childhood. Lately, though, I just want to leave and never come back. Which leads me to approximately 46 hours ago...

I woke up feeling really sick (in a cellulitic manner). I prayed that it was all just anxiety, and that none of it was actually happening, that I had entered some state of utter delusion that was a paradoxical world created by my rational fears. However, as the physical symptoms continued to progress, I could no longer deny the cellulitic force that had taken residency in my body.

Flash forward about 20-something hours, and I am being rushed to the hospital in the back of an ambulance. Long-story short, I am here being given great medical treatment. Aside from pain control (the intense pain stemmed from my back thigh), I am being treated intravenously with fluids and clyndamycin. Dr. Fishman came to the ER today shortly after I arrived to examine my situation. Upon looking at the area, he said to one of the vascular nurses “that looks cellulitic to me”. Contrary to what one may presume, this is not a man that is quick to throw you on antibiotics if he does not think you are in dire need of them, especially in cases like mine where I have so many outstanding drug allergies.

My mom said he looked utterly disgusted to see me back. I can imagine it must be hard on him in these situations, as he exerts so much effort into preventing such situations from reoccuring. When I think of Dr. Fishman, I do not just think of a KT expert or surgeon, but that of a human being. He had kids of his own at home, not to mention a wife...and the time in which he has dedicated to his patients should not be forgotten, if even momentarily. I know I am not alone when I say I am genuinely grateful for the time and dedication in which he has put forth into the KT realm, which is why I will forever stay loyal.

- I will shamelessly attribute any absurdity in this post to the fact that I am writing it at 4:10 AM, and have not slept in two days. However, considering, I don't think it's quite as atrocious as some of the things I write when I am fully rested ; )

Love to you all,

-A 

Relentless Recovery

Hey everyone,

So the above picture is one in which I took today to showcase part of the area that was worked on during my most recent surgery with Dr. Fishman. If you look at the back of my thigh and the area that is closest to my underwear, then you will see some of the more prominent areas in which he co2 lasered. The one's from Dr. Alomari's surgery in June are fully recovered and you can see some of those scars accentuated on my longer birthmark.

I am still in so much pain from Dr. Fishman's surgery. It hurts so incredibly bad; the skin keeps getting really dry so I have to keep rubbing bacetracin all over it. The other day, it was so dry that I had to use an entire tube in order to generously cover all of the areas! If you don't keep the areas moist, they crack and bleed which just prolongs healing. Not to mention you are opening yourself up for the risk of infection all the more so. The pain radiating from the areas is still so intense even though it is almost two weeks after surgery, and that's with the pain medicine! I would honestly have to think about whether or not I would want co2 laser surgery again in the future... The amount of torture in which the recoveries from Dr. Alomari's and Dr. Fishman's surgeries have inflicted upon me has been rather brutal. I'm ready to return to my old life now, although I am not quite sure what that entails as I never really have a concept of “normal” due to my tumultuous medical life...

Wishing you all well,

-A

By the way, I may need to stop signing these with “A” at the end...one of my nurses at Children's Hospital Boston (Kristen, if you're reading this, hi!!!) got me into Pretty Little Liars (a television show) ...if you know anything about the show then you know why I may be reluctant to sign these with an A from now on lol

Home

Hey everyone! I am, at last, home! I have been for a couple of days now, and in spite of the constant pain stemming from the surgeries in which I had done, am enjoying being back in a familial atmosphere. If you keep up with this blog, then you are aware of the c02 laser Dr. Alomari did on my leg back in June. Those legions have scarred over and looks utterly fantastic now, (pics are on here in one of my more recent posts) but the pain in which I endured in order to recover was momentous! Dr. Fishman performed a very similar surgery, albeit in a more taboo area; we'll just say the thigh and regions of the buttock. He also did some schlerotherapy to help stop some rectal bleeding I have been experiencing for several years now. This is not the first surgery I have had done in relation to rectal bleeding; a lot of KTS patients, so I've noticed, are more hesitant to talk about this facet of this condition. I completely understand, as I was too for the vast majority of my teen-aged years. However, what many do not realize is that rectal bleeding is anything but ucommon in KTS patients. Some I have talked to have been rather surprised/delighted to find out that they are not the only ones who have been impacted by KTS in this way!

I am currently in so much pain from the laser in which Dr. Fishman did on my thigh and buttocks. The areas are still healing (they were done just over a week ago), but I know ultimately the surgery needed to be done. Lasering these areas was not done in an effort for the areas to look better cosmetically, but rather as a way of preventing infection. Some of these areas ooze out continuously (blood, lymph. Fluid) and allow bacteria to sneak in. Since cellulitis infections have been a tremendous burden on me throughout my lifetime, it is essential to have surgeries of these kind done every now and then to lower my risk factor.

It is currently not even 7am as I write this but since I could not sleep due to pain, I wanted to update you all on the surgery I had done with Dr. Steve Fishman. As many of you may be aware, Dr. Fishman and Dr. Alomari are both members of the vascular anomalies team at Children's Hospital Boston. I trust both of them immensely and am grateful for the incredible work in which they have both done on me, improving my quality of life drastically over the years. - A

Below is a picture of me and my sister right before I was discharged!