Wednesday, October 31, 2012


Everyone has their highs and lows, and it can be hard to differentiate between what is normal and what is part of a complex condition (bipolar). I do know, however, that about a week ago, I fell into a deeply depressed state one night. Nothing had gone awry, nothing in particular had triggered it, but there it was, present deep within me; I couldn't shake it despite how hard I tried. During that time, I was talking to a dear friend of mine who was hospitalized and also recently diagnosed as being bipolar. It is really amazing to have her as a support system, and she has given me some really good advice. One of the things in which she told me was “Be honest about what you need from those around you, right now.” She inspired me to get out of bed and go tell my mom just how lousy I was feeling. And then we talked, and I cried, and so forth. Still, it was important to release that pent up negativity; did you know crying actually helps to release stress hormones from your body? 

Hours later, I still felt extremely sad but I did not feel alone. Even though I don't like to admit any perceived “weakness” of any kind to anyone, I know it is important to in situations like these. Letting go of your pride may be difficult, but it's absolutely worth it, especially if it  helps to stabilize you and not feel locked in by your own negative feelings.

But I really liked the advice she gave me because I think it can apply to all of us with medical conditions.

“Be honest about what you need from those around you, right now.”

I think this is important when it comes to not just family, but friends as well.
How else are they supposed to know what we are feeling and how to best accommodate us unless we let them in?



Tuesday, October 30, 2012


Even though it was enough for two days of my college classes to be canceled, my area (15 miles north of Boston) only got the leftovers of the hurricane. The remains still did some damage though; such as power outages and fallen trees. However, no massive flooding like is being seen in pictures from New Jersey and New York.

Wherever you may be while reading this,
hope you are safe & healthy

Monday, October 29, 2012

Some old (and a couple of recent) hospital pictures that I had in my room. My mom has way more but these will suffice...at least for now : )

Activity room 
 Physical therapy after removal of growth plate in 5th grade
 Leaving the hospital after one of my debulking surgeries
 With one of my favorite nurses
 My sister was just weeks before one of my surgeries
Me & my sister






 After one of my 11 hour surgeries last year. I was in recovery.
Still in recovery. I wanted my sister by my side.


Sunday, October 28, 2012


Being immersed into the world of an adult is a strange feeling when you feel as though your teenage years barely even existed. Until the end of eighth grade, I was living relatively normal and then everything changed in a flash. I didn't know what I was in for, and sometimes I think that naivete was for the best as I was so young, I wasn't aware of the complexities that would be thrown my way.

My younger sister is in high school and I see her living the high school life in which I wanted, the one in which I thought I would have. Seeing her involved in activities, going out with friends constantly and having boyfriends makes me realize just how much I did miss out on. High school is the years in which you really begin to find your independence – and dare I say even revel in it, to a certain extent. In some ways I did find my independence, in other ways I was halted by my life circumstances. I learned to drive years after my friends did, but I did eventually learn. Sometimes, I feel as though I am just learning things that people my age have known how to do for years, and it frightens me. I feel threatened because at this point, I am expected to function as an adult, but there are so many days in which I do not feel ready, especially in a social context.

Every now and then, it feels as though I have been whisked onto an arena stage without any say. It's as though beaming lights come on and there are throngs of people so ready to see me do something, a performance of some sort. Only thing is, I have no clue what I am doing up there and have no prior performance skills; I didn't ask for this, nor was I ready for this. So I just stand there, mute, and the crowd watches with curiosity to see if I will do something, anything.

Friday, October 26, 2012


I am not sure where to begin, or where I am even going with this post exactly. However, I want to acknowledge how good of a place I am in with my Klippel-Trenaunay Syndrome. Last year at this time (prior to finding a working pain medication) I was in heaps of pain if I walked around for only a little while. Now, I can wander a great deal with very little pain and I am still astonished by how this one tiny pill has so much impact and force within my body.
Blood clots and cellulitis infection have been extremely minimal, and I have not been hospitalized since June.

I recall in years past doctors crooning over how good they thought my KTS looked. This is what you call good looking, really? I was looking at it in comparison to my other leg, while they were looking at it in comparison to the radical cases in which they had been exposed to over the years, as a part of the job.
And now, years later, I see what they meant in regards to its appearance. For one, you can make out that it's the shape of a leg, foot and all. The texture is (with the exception of a few small areas) is smooth and a lot of my problematic hermangiomas are a thing of the past.

I can bend it and straighten it with ease, and can wiggle my toes and all that.

I've been exposed to so many worse cases now (primarily via pictures) that I cannot grasp just how unaffected mine looks. I did have two debulking surgeries done in the past, but that doesn't really negate my main point. KTS wise, I am healthy, and while some of that can be attributed to luck, a very large portion of my success with KTS has been my doctors. The right combination of luck and fantastically skilled doctors has left me in a good place.

The importance of finding doctors who you trust is crucial. It saddens me to read how many people dislike their doctors or don't know where to go in an area near them and what not. I can't solve everything, but I can (given my KTS fortune) help advocate for others who are too unhealthy to actively advocate for themselves within society. That's the place in which I find myself at now with my condition.



Thursday, October 25, 2012

"You can take everything I have 
You can break everything I am
Like I'm made of glass
Like I'm made of paper
Go on and try to tear me down
I will be rising from the ground
Like a skyscraper, like a skyscraper

Go run run run I'm gonna stay right here
Watch you disappear yeah
Go run run run yeah it's a long way down
But I'm closer to the clouds up here"

Sunday, October 21, 2012

Check Out Pictures of other KTS Patients


Approximately one week ago I came up with the idea of making a “Show Others your KTS” page, in which patients could submit their own pictures of KTS to be posted. So I reached out and have received amazing support, and several people have already submitted their pictures. Go check out the page to see for yourself. It is amazing to see pictures of others' KTS and compare/contrast it to your own or even other patients' pictures. Thank you all for your support, as blogging truly does make me a happier person. I could not be prouder to be a part of the KTS community as it's filled with the most accepting and empathetic people you will ever meet. If one of us falls, there is someone there to help pick us up, and there is something absolutely beautiful to be said about that.

Friday, October 19, 2012

Re-post: Pure O


Pure-O I always had signs of OCD and more recently that of Pure-O (a form of OCD) since I was a child. I remember being in church and I would be scared I would think something bad in such a sacred place. My mind, feeling threatened, would of course come up with some ridiculous pejorative thought, and then I would go into a state of panic for thinking said thought. Maybe because I had the thought my mom would die, or maybe it would be my dad. I remember tracing the number of lines that divided tiles on the floor. I would think that if I didn't count in multiple of three’s or what not, something bad would happen to someone I love. Then, I would get frustrated at those around me. At times, I would think if you only knew all of the work I have done today just to keep you alive; and what I really meant by “work” was, well, compulsions. When I was in high school, I would rewrite certain written assignments two or three times, because if I started the first word and the first letter of it didn’t look "right," something bad was bound to happen. Maybe I would die, or maybe someone else close to me would. Rewriting the assignment made me feel better, that is until the next anxious thought came along. Maybe it was turning the sink or light switch on and off three times, maybe not. The strange thing is that I was able to keep this relatively quiet amongst my closest friends and family. No one knew I was going through this while I was, and that’s because I took extra precautions to make sure they didn't. At the time, I began to sense that this was not a normal way of life however I felt it was the only way to survive at that point. I remember feeling so much sorrow inside, so much anxiety and such an abundance of fear. In the next three years or so until college, I was able to calm some of my physical compulsions, actually most of them. If I felt like I needed to do a physical compulsion to calm my nerves, I would force myself not to do it, and let the anxiety dwell within me for however long it took to pass back to a state of normal. I came to realize gradually that I would not drop dead if I didn't do it or nothing catastrophic would happen right after if I didn't give in to these compulsions. Slowly, they fell to the wayside. Not to say I am 100%, and I still have my hard times with it. After these compulsions started to ease up, I fell head first into a different form of OCD entitled Pure-O. This is basically having repetitive, irrational fears and mentally “checking” and ruminating in your mind about them. Generally, the ruminating is focused on one irrational fear that the person sees as a legitimate threat. I could go on and on about Pure-O, but I am not much up for typing about that part of my life with OCD thus far at this moment in time. I will say that things started to get majorly out of control with it my freshman year and I have since been on OCD medication and had regular counseling sessions. Yet, everyday is still a battle for me; although some days are easier than others. It’s hard though, as no one else I know around me has gone through anything relatively like this and can’t relate at all. I have read and talked with other people on the internet who have gone through the same thing, and while it was helpful, it would be awesome if I could physically interact with someone who understands. Every day with this is a battle, and sometimes I get really down from it but I just keep going. Life has its sweet moments, and in order to get to those, you just have to get through these, even if you take life minute by minute. As hard as things get, there is always a time in the future when I look back and am glad I kept going because I wouldn't want to miss this or that. Sometimes it seems doubtful that period of bliss will ever come again, but it always does. Perhaps the number one thing I learned is to find a balance between being busy enough in my daily live, but not too busy.

Take all my vicious words And turn them into something good Take all my preconceptions And let the truth be understood Take all my prized possessions Leave only what I need Take all my pieces of doubt And let me be what's underneath Courage is when you're afraid, But you keep on moving anyway Courage is when you're in pain, But you keep on living anyway We all have excuses why Living in fear something in us dies Like a bird with broken wings It's not how high he flies, But the song he sings Courage is when you're afraid, But you keep on moving anyway Courage is when you're in pain, But you keep on living anyway, You keep on living anyway It's not how many times you've been knocked down It's how many times you get back up Courage is when you've lost your way, But you find your strength anyway Courage is when you're afraid Courage is when it all seems grey Courage is when you make a change, And you keep on living anyway You keep on moving anyway You keep on giving anyway You keep on loving anyway Courage Is - The Strange Familiar

Thursday, October 18, 2012


So the other night, I took some pictures in which my KTS leg was apparent. I posted one on a social networking profile of mine and was appalled at all of the positive feedback I received from friends and family. It was really heart-warming to read all of their kind words, and it inspired me to keep being who I am, which is someone who advocates for people of all shapes, sizes, and colors. Below, I posted more pictures from the night in which I posted one on my social networking profile.

I am currently feeling a momentous amount of pain because I was heedless and let myself run out of pain medicine for the past few days, which for me is Meloxicam 15mg. I called CHB pain management a couple of hours ago and am waiting eagerly for them to get back to me, but for the time being I am stuck in bed feeling the burning/throbbing sensations. I was unable to sleep last night because of the pain, and had to skip class this morning as walking was, well, a challenge. When my pain level is this elevated, I have a hard time focusing on anything else as the pain consumes my mind. & to think this all could have been prevented had I not been so lax. I always seem to forget how bad the pain (prior to finding a pain med. that worked) really was until I am off the Meloxicam for a day or more. Note to others: Be wiser than I am and don't allow yourself to run out of your pain medication prior to getting the prescription refilled.

Tuesday, October 16, 2012

Want to know what a true friend is like?
Well, let me tell you a story in which demonstrates a friend who is truly there for you through thick and thin.

I was supposed to go out last Saturday night, and I had been looking forward to a night out with one of my best friends and other people my own age. It would be a fun opportunity to get a little dressed up, go out, and socialize, something in which I was in dire need of. However, when that day came, not only was I having a bad pain day, but my emotions were running high. I didn't want to break my commitment, though, and inside I truly did want to go out and feel like a normal 21 year old, even if just for a little while. So, I decided I would just grin and bear it, and besides, my best friend would be with me, so that of course provided me some consolation.

Saturday afternoon, I called my friend to come over to help me pick my outfit. The place in which we were going was kind of a club/bar hybrid, and I had never been to one before. So, my friend came right over and raided my closet for me. Since my leg was hurting, I was elevating my leg in bed and she was holding up different options. We had nearly gone through my entire closet when I looked at her and said “I am so sorry right now, you are going to hate me, but I really don't think I can do this tonight.” Mind you, this is after about an hour of having gone through all my clothes for me. Instead of lashing out at me, she came and sat down next to me in bed and we just talked about things going on in our lives. At that point of time, I had been feeling really anxious and depressed and what not, and what I really needed was for someone to just be present and talk or not talk with me.. She gave me absolutely no grief about not going out that night, and I later on I remained in bed and rested as my body just felt so incredibly fatigued.

Anyways, I have spoken a great deal about friends who have not been there for me lately, but I wanted to talk about one who always has. She's actually more like a sister than a friend, and I am so fortunate to have her in my life. There are good friends who will be there for your through thick and thin; that doesn't mean you will never get frustrated with one another, but it means you make an effort to work through and communicate. While my friend doesn't know exactly what I am going through (no one could, unless they were implanted into my body ), she is always there. And sometimes, that's all you need, is just for a person to be there.

Wednesday, October 3, 2012


One crucial discovery I made in my life was acknowledging how screwed up my thought process had become from medical trauma in years past. I didn't pay much any attention to it, however, until it was pointed out to me by a psych. Professional.

By medical trauma, I mean not just the infections and surgeries and what not, but the ginormous impact in which those had on my everyday life, whether it be social or mentally.

Changing my thought process is honestly one of the hardest journey's I have ever embarked on; my mind is solidified by stubbornness and negative thoughts. I am still at the very beginning, but I hear the end result is more than worth the effort.

One thing that had an enormous impact on my social well-being was the amount of friends who betrayed me in high school while I was at my sickest, when I needed them the most. The loss and hurt this caused me left a sticky residue on my heart – and over the years, I have found that I have become much less trusting of all friends/people in general.

It's vital to recognize where your self-destructive thought process began to go awry – to have some understanding of the life events that triggered such a surge of negative thoughts into your everyday conscious. It is vital to begin to hold yourself accountable for the thoughts in which fill your mind on a daily basis.

Like I said, I am just beginning this journey of transforming my thoughts now and it is by far one of the hardest things I have had to face.

In fact, I find this much harder than when I do get sick from an infection or am recovering from a surgery or what not. That may seem like a strange statement to make, but I will explain it to the best of my ability.

When I do get extremely sick in relation to my KTS, I play a much less prominent role in getting better. Basically, all I have to do is sit in a bed and wait for IV medications to begin to work their wonders, and, they always do. The medicine is soaked up by my ill-ridden body and returns it to a somewhat normal state in a matter of days.

This cognitive process is nothing like that; it involves me being an active agent in my own recovery, whereas it was previously the medication. I determine which way this thing will or will not go, and it takes constant work and effort. I'm the only one who can take initiative, no one else can come into my mind and reverse the damage that has been done.

It's a hard battle, and one in which I do not think most people can understand unless they have been through it themselves, much like a physical disability.





- Arianna

For those of you who have faced similar challenges, what has helped you?