Communication.
It can make or break a relationship of any sort.

One thing in which I am extremely guilty of is comparing myself and my life's progress to that of a normal (healthy) kid my age. Even though my life has been anything but normal in regards to my physical health, I still mentally hold myself to the same standards in terms of my overall progress in life as far as work, school, and my personal matters are concerned. I like to ignore all of the extenuating circumstances in which I have had throughout the years that may have hindered my perceived lack of growth in some of these areas; in some ways, doing so is being completely in denial of some of the realities I've dealt with, which is clearly not a healthy manner in which to conduct my life.

I am learning to accept and believe that I am where I should be right now in my life; my life pace is not necessarily going to match up with that of my friends and family. 

I have touched upon this in the past, but as I grow older I have found that many of my friendships have fell to the wayside as my condition has become more prevalent in many aspects of my everyday life. Needless to say, I have had to make some accommodations in my social life because of worsening symptoms/pain.

I am tired, a lot. After a week of college classes, the last thing I feel up to is going out to parties and bars all night. As much as I may want to go out and socialize, my body just has other ideas about how I should spend my time, like being in bed at a decent time that evening.

It's hard because I want to go out and socialize like everyone else, but physically my body is rejecting the notion to do so.

Being 21, a lot of my friends without chronic illnesses are often spending their free time socializing in the city at bars or clubs drinking, or at late night parties and what not. I often feel like I don't fit in, and I am learning to accept that in reality, I don't. Quite honestly, it's a strange place to be in.

That's why I thank the heavens for my other friends with chronic illnesses. Some of them have already been through this stage and are generous enough to share their own personal experiences on the subject and the life lessons in which they have learned from them.

& While technology makes communication easier than ever before, it is still hard to not always have somebody in person to just laugh or cry with who really understands. I am continuously learning to accept that despite my desire, I cannot do everything my typical 21-year-old friends are doing.

Can anyone reading relate?

My ankle was pestering me at the mall today, but I have been home resting it for a few hours and am pretty much all good now. ( =

I was extremely happy that my doctors got to attend the KTS meeting and speak; I always spoke highly of them to my friends, but it is a whole other thing for them to actually hear them speak for themselves.

More and more I see KTS patients gravitating towards Children's Hospital Boston; I am always confident they will be in amazing hands.

As far as my KTS, I am healthy and in a good place; no clots or infections in sight. I have a pain medication that works beautifully on most days. I have bleeding, but not a severe amount.

Perhaps my biggest KT hindrance at the moment is finding pants that fit both legs. I know a lot of us struggle with this; it can make shopping so utterly frustrating. However, is that is my biggest issue at the moment, I recognize that I am doing pretty damn well.

Smooth sailing ahead, at least for now.

( ;

Quoting directly from the KT Foundation Facebook page itself:

"These are exciting times for the KT community. Doctors have recently discovered the cause of CLOVES Syndrome (a closely related syndrome to KT) bit.ly/Pen6PT, we're very close to knowing the exact cause of KT, new medications are currently

being tested, and surgical options have become more successful at helping some with KT. Now is the time that we need to grow. We're currently at 196 likes, but we need many more. Please share this page with ALL of your friends and family and let's grow this KT community!"

Please be so kind as to like the main website if you haven't already; strength in numbers!

Also, don't forget to check out the main website for the foundation. I recently had the chance to meet Adam Cole, one of the main people who runs the foundation, along with his fiancee Jessica at the biannual meeting in Minnesota. All I have to say is that they are two of the most upstanding, genuine people I know; their dedication and commitment to helping those with this condition is absolutely unparalleled and the KT community is so incredibly fortunate to have them.

Vintage post

From my old blog KT Fabulous

I decided to include this one because I am about ready to return to my collegiate studies in less than a month. Sometimes, I get so caught up in the stress of my studies that I forget to slow down a little. Re-reading this just made me remember how important it is to find that right daily balance as the fall semester approaches.

"Strike A Balance"
Hey all! Not too much to report at current – but I am still beginning to work on some projects in which I will be very excited to share with you guys in the near future. Spiritually, I am in a good place right now and am very excited that by this time next year I will be back in school and working on my academics. These next few months should be rather busying ones in which time flies quickly. I anticipate that as far as emotional discomfort due to “boredom” is concerned, the worst is behind me. 
I genuinely believe that people living with a medical condition need to find a daily routine in which works for them. Personally, I have experienced two ends of the spectrum – being too busy and not being busy enough. I found that neither of them was quite right for me on a day to day basis, and am hoping that over time I will find just the right balance as far as how I conduct my living on a routine basis. Not only were the two extremes not right for me, but nor were they healthy physically or mentally. I look forward to moving at a pace that provides me with mental satisfaction and allows me to be physically active without overdoing it. - Arianna

Today my dad met a seven-year-old boy who is terminally ill with cancer. Just hearing about the details about him made my heart shatter into a million different pieces. Earlier in the day, I was worrying about how my make-up looked (as embarrassing as it is to admit) ,and now I was brought back to reality as to what is truly important; to count my blessings so to speak.
I know nobody has claimed it is, but I just can't get over how unfair life can be. A young boy who is never going to have the chance to grow up; he's essentially being robbed of a life.
Even though I don't know him personally (nor any of you reading this, chances are) I think it would be awesome for us to send some prayers his way.  

"'Cause I couldn't live without,

The sunsets that dazzle in the dusk,
So I'll drag the anchor up,
And rest assured, 'cause dreams don't turn to dust!
Dreams don't turn to dust."

If you have Netflix, I highly recommend the documentary entitled America the Beautiful on instant. It reinforces just how important self-worth is.

Anyone already see it?

This picture was taken approximately two weeks ago on a hot and humid evening in New England.
Below is the area impacted by my KTS; it may look somewhat alarming for someone who has never seen a case of KT before. However, in comparison to some other cases of KT, I have it very mild.

When I was younger, my doctors would comment on how "great" it looked on the outside. They were referring to the shape and texture. Shape wise, you can easily make out that it's a leg and foot. Not to mention, the texture is fairly smooth and similar to my right leg. 

"You think THIS looks great?" I would say to myself. Now, as I've gotten older, I have come to realize what they meant by using that word. I have been exposed to many visuals of worse cases than I have, and as much as I hate to appreciate my fortune based upon the misfortune of others, I cannot help but feel lucky I got it as mild as I did. At the doctors presentations in Minnesota, I saw many pictures of some of the most extreme cases ever documented. It is incredibly eye-opening, and a reality check as to what could have been.

This year at the KT conference, a professional in the mental healthy industry spoke about emotional health/mental illness in relation to having a chronic condition, especially one as bewildering as KTS. From what I heard, it was the first time a mental healthy segment had been added to the Saturday portion of the scheduled line-up over the years.

As someone who has struggled (and still does) with clinical anxiety and depression these past few years, I was especially interested in hearing what the speaker had to say in regards to this topic matter.

When one is in a constant state of physical pain, it is going to impact their overall well-being emotionally. Of course the caliber in which this impacts a person varies due to several noted variables as demonstrated in numerous studies(genes, particular circumstances, environment, etc. The list could go on and on).

Say that one is able to eradicate their source of physical pain; maybe a new medicine has started to work, or perhaps some surgery was performed that helped in easing it.. Well, the physical pain is gone, but there is going to be emotional residue leftover.

All too often, people think that once their physical pain is eradicated, they will be happy and return to a peaceful state of mind

That's why it is equally important to treat not only the physical components of chronic illness, but the emotional ones as well.

I hope that the presentation inspired those who may be struggling emotionally to speak up and ask for help; hopefully they realize they are not alone and that there is help out there. Personally, I know it would have been of great benefit to me to see a presentation of that sort when I was a teenager.

While at the KT conference, I had numerous people (mostly parents) come up to me and mention my old blog, KT Fabulous, to me. A lot of them shared kind words about how it helped them, and how much they appreciated it. Never had I imagined that my words could come of such comfort to others dealing with similar experiences - whether it was the patient themselves or the family members.

It was weird to hear this in person, but truly awe-inspiring. Then, on Saturday, I am presented a certificate which was awarded to me bases upon the writings I did for the blog. When Mel (one of the main organizers of the KTS meeting, runs K-T.org) , the person presenting the certificates, called me name, I was in utter shock. Never had I thought my writings had made such a deep impact on the KT community that their essence would be remembered long after I had deleted them. If anything, though, the whole experience encouraged me to keep writing. For me, there is one essential component in every single piece of writing I do, heart. Without heart, what's the point?

Maybe that is why people related to my old writings so much – I wasn't scared to strip down to my naked emotions. I rarely held back in regards to my experiences and lessons, and I can honestly say that for me it was worth it.

So whether or not you may have read the old blog or this is your first time ever reading something of mine, I hope I can at least be of a little inspiration to you or somebody out there. I cannot guarantee the type of KTS related topics I will be mainly writing about; I will probably switch around. However, I can say with great certainty that they will be genuine, just as all my old ones were.  

A few days ago, I returned back home from the biennual KT conference in Minnesota. To put it simply, I had the best time!

Meeting everyone in person for the first time was a surreal experience, to say the least. It was as though we all had this instantaneous connection; we all bonded so quickly. I genuinely felt as though I was amongst longtime friends and extended family members.

Also, I must say that never have I been exposed to such pure love and kindness. I honestly can think of no other way to put it. I miss everyone so much, but I know we will all continue to stay in contact.

I will write more about my time there in future posts.