Thursday, March 28, 2013

"I have not failed. I've just found 10,000 ways that won't work."

Tuesday, March 26, 2013

Interview with Adam Cole. Happy Birthday!

A few years ago, I interviewed a dear friend and fellow Klippel-Trenaunay Syndrome colleague Adam Cole about his own KTS and the work in which he was (and still is) doing in behalf of the KT Foundation. Today is his birthday, and I wanted to repost this old interview for those of you who may not have seen it on my previous blog in honor of it. Adam works to constantly advocate for KTS patients; his hard work and dedication has not gone unnoticed, nor should it. The momentous amount of work he does in regards to promoting awareness for this condition (while also having to live with its implications on a daily basis himself) will not be forgotten. Happy birthday, Adam! Thank you for having been such a loyal supporter and friend of mine since we met. Here is to hoping the year ahead brings you lots of love, health, and happiness. - A

Age: 29
Relationship to KTS: Patient
What age were you diagnosed? I was diagnosed at birth.
What were some of your experiences growing up with Klippel-Trenaunay Syndrome?
The pain associated with KTS is what bothered me the most. Fortunately, I was able to be physically active throughout my childhood, electing to play basketball and baseball, among other sports. I performed these activities before wearing a support stocking on my right leg, as I do now. While I was able to be physically active, I do remember having limits, especially in walking a considerable distance. As I grew older, I had to wear the stockings to tolerate the extra swelling and pain from being on my feet during the day. 
The most critical moment that I’ve had with KTS was in 2003. In late December of that year, I was diagnosed with pulmonary emboli (blood clots in both lungs). Since that time, I’ve been on anticoagulant therapy (blood thinner) to help prevent that from occuring again.
What inspired you to become involved within the KTS community? 
While doing an online search to see the latest information available about KTS in 2005, I ran across the KT Foundation for the first time. I was thrilled to see an organization devoted to helping KTS patients. I wanted to learn more about the foundation and how I could help by promoting it through our family race team, Cole Motorsports. Therefore, we started advertising the foundation on our car during the 2006 racing season. We have now featured the KT Foundation on our race car for the last five seasons.
Can you explain the kind of work you do for the KT Foundation and how you help to gain exposure of what KTS is? 
I am a marketing representative for the foundation. I work to gain exposure for the foundation and the cause we support, patients with Klippel-Trenaunay Syndrome. Primarily, I search for people, venues, etc. to promote the foundation in various capacities. In recent years, Orange County Speedway in Rougemont, NC promoted the KT Foundation as its featured charity. Several race teams in North Carolina and Virginia have also displayed our logo on their cars in races in the area.
2010 has been a strong year for us in terms of gaining exposure. Earlier in the year, Comedian Chris Wiles from The Comedy Zone in Greensboro, NC performed a benefit concert for the foundation in my hometown of Roxboro, NC. Despite a hectic 2010 schedule for Wiles, we’re currently planning a second show for 2010 in Greensboro, NC.
NASCAR Nationwide Series driver Peyton Sellers promoted the KT Foundation in the largest Late Model Stock Car race in the country in October 2010. The foundation was featured on the hood of Peyton’s No. 83 car in the Virginia is for Lovers 300 at Martinsville Speedway. The race attracted 85 cars that attempted to make the race and had an audience of approximately 20,000 people. Pictures of Peyton and the KT Foundation Chevrolet are available at www.causes.com/ktfoundation.
From speaking to you through Facebook, I understand that this Saturday will be a significant one within the KTS community. Can you explain what will be taking place? 
Peyton Sellers will be displaying the KT Foundation logo on his car in the NASCAR Nationwide Series race at Gateway International Raceway this weekend. Peyton will be driving the No. 23 Brandt Chevrolet for R3 Motorsports in the 5 Hour Energy 250.
How did the KT Foundation become involved with Peyton Sellers? 
Peyton and his brother, H.C., have been supporters of our family race team for many years. Sellers Racing, Inc. has assisted us with technical assistance, chassis setups, and more. During that time, we’ve become good friends with the entire Sellers family. Peyton and H.C. are aware of my condition and that I’m a part of the KT Foundation. They have been willing to support us in many ways, and the latest was having the KT Foundation logo on all of the Sellers Racing cars at Martinsville Speedway in 2010.
When and where can people watch the races that will take place
The Nationwide Series race at Gateway International Raceway will be aired live on ESPN2 this Saturday, October 23, at 3PM Eastern/2PM Central time. 
Please Note:
The race will also be on the radio at 3PM on Motor Racing Network (MRN) affiliate stations.
Will there be more races that will help gain exposure for KTS later this year?
Yes. Peyton will also be promoting the KT Foundation on November 21 at Myrtle Beach Speedway in the Myrtle Beach 400 Late Model Stock Car race.
Additional Commentary:
More information is available about Peyton Sellers athttp://www.peytonsellers.com./
Contact Information:
Adam Cole
awcole10@hotmail.com
336-598-1599
http://www.ktfoundation.org/
www.causes.com/ktfoundation


Obviously I cannot speak for everyone with this condition, but Klippel-Trenaunay Syndrome loves to play tricks on me on a constant basis! Sometimes an area will feel sore, and I cannot tell if it warrants seeking medical attention or not. This happens a lot to me with blood clots (except for those that make it so I can't stand or walk!) as I am not always sure if I should let it run its course or seek out treatment for blood thinners such as Lovenox. Do not even get me started on infections...an area can have a massive red area and be sore and progress downwards in no time. Other times, an assumed infection will start to pop up and just go away, and soon enough it will be as though it was never there to begin with! This is of course a blessing, but the mind games in which this condition plays with me can just be so utterly exhausting.

Any of you experience something similar?

We are always told to pay attention to what our body is trying to tell us, unfortunately it is not always a black or white situation!


Friday, March 22, 2013

Thoughts Stemming from Chronic Pain


You want to put it out of your mind, but you can't, there's just no way. The pain cuts too deep and is far too widespread to just shove into the back of your mind and into oblivion, and you're just left to deal... You're left to deal with a mess that is not of your own doing, but one in which you were born into... and at that point, it is hard to tell which is actually more painful... the emotional or physical component of your condition. You're never quite able to tell, however, as when one is turned on, so is the other. They act simultaneously, and together can create a force so audacious and relentless that you wonder if you ever stood any chance at all.

- A

Tuesday, March 19, 2013

My Birthday is Not Just My Day


Since the clock struck midnight, I have been inundated with texts and Facebook notifications all saying happy birthday. It is so nice to receive such ample dosages of love and appreciation in such a short period of time, but I cannot help but feel as though this day doesn't entirely belong to me.

22 years ago, a frightened couple stood in a Boston delivery room with an array of doctors in their midst. They were so petrified, and they didn't know what was going to happen. According to my parents, there was approximately 20 doctors scrambling about in that nippy, minute delivery room. My parents knew what the doctors had told them from the ultrasound: that there was a massive hermangioma and I could bleed to death at birth.

I can't imagine the anxiety in which my parents must have felt; how does one prepare for such a situation? You can't, all you can do is reach for something solid and hold on tight and pray like hell. They must have been so incredibly frightened, and felt so helpless, so helpless to not be able to fix their new baby. It must have been the most agonizing feeling in the world, to standby and feel so powerless...and yet they got through it. Not only did they get through it, but they got me through it and by that I mean life.

Here I am at 22, living life one day at a time. I would have never made it to this point without them. So really, this day is just as much a testament to them and their perseverance/love as it is to my existence.

Thank you to my wonderful parents and for all the lovely wishes. - Arianna


Monday, March 18, 2013

Lovely Klippel Veins

A picture of my Klippel foot taken this morning. If you look closely, you can see the vein that extends from the bottom of my last toe all the way down the rest of my foot. Here is the rather weird thing about this vein: during the day, I function just fine with it. At night, however, when the foot is mainly stagnant, it hurts such a great amount! It makes no sense to me as I would have presumed it to be opposite. But when I do wake up in the middle of the evening, this vein is sometimes so bothersome that it prevents me from falling back asleep.  It may look small, but the pain that radiates from it is anything but.

Friday, March 15, 2013

Atlantic City Weekend

A couple of weeks ago, I went away to Atlantic City with my grandparents for the weekend. It was so nice to be able to get away, even for just a little bit! As juvenile as this may sound, this was my first ever vacation without my parents in tow. And for this KT girl, that was a bit scary! Mainly because of my past with cellulitis infections. I have gotten incredibly sick in the past while away, and having my mom there to watch over me was always a major relief. I may have been deadly sick, but I had my mom to give me my medicine and what not while I lay in bed lifeless from the agonizing pain and systematic symptoms
Even though the chances of getting sick this vacation were slim, I was still worried that an infection could occur, so I brought oral antibiotics. If I had gotten sick, it would have been frightening to be so far away from home and not have my parents there.
The good thing was, I didn't get sick. Also, my grandparents accompanied me on the trip and having them there would have been a comfort too (had I fallen ill). My Nana and Papa have been there for my family and I since I was born; whenever I was hospitalized, they were in my room each day/night making me laugh and forget about any medical struggles I was going through. They have a been a vital part of all my recoveries, and I would be incredibly lost without them.
So I did not get sick, and had an absolute blast with two of the most important people in my live. Treasure the people who have been there for you regardless, because they are the true gems in which you cannot put a price on. - A









Thursday, March 14, 2013

Chasing Happiness

Can you be a happy person, even with a chronic illness?

Absolutely. I would know because for several years I was one of the happiest people alive, and I do not make that claim lightly. I remember my best summers were those I spent playing outdoors - even if that just entailed my older sister pushing me around in a wagon while I clutched onto my American Girl Doll. I went through so much physical agony as a child, and yet I was truly happy. I would have normal mood changes every now and then - I may have felt frightened before a surgery or angry if I didn't get something I wanted. But, overall, I loved life and all in which it had to offer. Throughout my life, I have always had people ask me "how are you always so happy all the time?" Others would make remarks about how I was always smiling. I found their accusations to be somewhat funny, as I simply did not even realize I was doing anything out of the ordinary per say...

Now, on the brink of turning 22, I find myself quite often unhappy or irritable/on-edge. I look back and start to wonder when I really lost sight of happiness, and that was probably around the age of 18. Since then I have been diagnosed as being bipolar while having OCD, and everyday feels like an immense struggle, a never-ending uphill battle so to speak. To be honest, some days are just downright torturous as far as mental scenarios are concerned; getting out of bed takes an enormous amount of strength often a time. When I was little, if someone were to tell me I were to be depressed and anxious when I grew up, I would have had no idea what they meant. Those terms were so foreign to me and I had no conceptualization of them. 
So, at current, I face some obstacles, obstacles like having Klippel-Trenaunay Syndrome along with being bipolar and having OCD. But you know what? I am not giving up on finding happiness. The happiness I felt as a child was so influential throughout my life that is has kept me going on many a nights where I feel as though I just cannot take anymore. I know that happiness exists and that I have to work to get it back, but I am ready for the challenge. I'm ready to start taking steps forward in finding and creating my own happiness. 



I was working on a big presentation due for a class tomorrow, but I had these thoughts running through my mind and I hadn't updated in a bit so I figured why not vent here for a bit.

Chase your own happiness. It won't just come to you. (so I am learning).
- A

Monday, March 11, 2013

Sorry it's been so long since I last updated! As if anyone reads this thing anyways haha ; ) I am still committed to this blog and have been extremely busy but new updates soon, promise. - A