Monday, January 28, 2013

A six-year-old me ( : I cannot believe how tiny my Klippel-Trenaunay was back then! 

Just a little flashback, anyway.
I have not had too much time to write yet with school but believe me I have a lot of posts coming as there is so much in which I want to write on here.

In the meantime, take care and I will talk to you sometime later this week! - A
P.S., You can still have an incredibly happy childhood with chronic illness. I am living proof : )



Saturday, January 26, 2013

Hey guys! I have resumed school in the past week and while the heavy workload is just about to begin, I am completely enamored by it, as usual.

 The one thing in which I have not done at school that I desperately need to is to register with disability services. In all actuality, I should have done this two years ago, but was utterly hesitant to. It was quite silly on my part as it has created a lot more obstacles as a student dealing with Klippel-Trenaunay Syndrome. The fact is that nobody will take you serious when you do need an accommodation unless you are registered with disability services. So, incoming college freshman, do not make the same mistake I did. I myself am in  the process of registering now.

Why didn't I sign up initially, as in two years ago, when it would have made my college life a lot easier? I wanted to separate my chronic illness from my school life; I basically wanted to play make believe that I was a normal student. And I am, except for the fact that I have one of the rarest medical conditions known to man. ( ; My fantasy is over and reality has set in yet again; KTS is messy and will bleed over into all areas of my live. Take the proper steps, however, and you can sometimes clean the mess up that much easier.

Here is a recent picture taken about an hour ago; my leg feels really heavy tonight.



Hope you all are well - and warm! It's been four degrees here, literally! - A

Tuesday, January 22, 2013


These are my parents; I honestly am not sure what to write other than how grateful I am for how much they have sacrificed for me over the years in order to give me the best quality of life possible. And believe me, there have been numerous sacrifices in conjunction with a lot of hard work on their behalf that has taken place throughout the entirety of my life. Sometimes, I feel as though my actions on the outside indicate that I may take that fact for granted. Inside, however, I am eternally grateful and can only hope that I am able to give back to them in even the smallest fraction of what they have given me over the years.

I am trying to work on being a more positive, expressive person on the outside as I used to be several years ago before life events hardened me a bit. If there is someone who has been there for you throughout your trials and tribulations, don't forget to let them know how much you appreciate their presence and contributions to your well-being. - A

  

Sunday, January 20, 2013


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 if you love me
Then let it be beautiful




Thursday, January 17, 2013

Admitted and Discharged Within Three Days...


Hey everyone,
Last time I wrote I was feeling particularly apprehensive in regards to my current health with Klippel-Trenaunay Syndrome. Since then, I have been admitted and released from Children's Hospital Boston. Normally I am inpatient for a longer time, so it all kind of feels like a blur, but I am incredibly thankful to be home in my own environment.

Long story short, I have something called thrombophlebitis. Thrombophlebitis is swelling (inflammation) of a vein caused by a blood clot.

The symptoms are as follows:
  • Red, swollen, and irritated skin and tissue around the area, such as along an affected leg.
  • Painful, warm, tender, or hard sensations in the area.
  • Pain or tenderness may increase when you put pressure on the affected area.
  • The swollen vein may feel like a tough "cord" under your skin.
  • Flexing your ankle may also be painful. 
  • Swollen foot or ankle, especially if only one side is swollen.
So, I am off antibiotics and can be on Ketorolac if I choose however right now my pain does not warrant taking one.
Enjoy a picture below of an incredibly frustrated me in the emergency room after seven hours. Ultimately, it ended up being a total of 12 hours in the emergency room. None of my doctors were there, and this meant telling copious amounts of professionals what KTS is in the first place. My favorite was when one of the female doctors asked me how we should treat this; yeah, that happened. Generally, Children's Hospital Boston is a shining star as far as medical care is concerned, but let's just say this trip was less than stellar (other than the impeccable ER and floor nurses). Once my regular doctors were involved, however, things went smooth and I felt safe and assured.





Sunday, January 13, 2013

Something is not right, and at the moment I am powerless to do anything about it. I absolutely hate this feeling, not that I have ever met anyone that likes being powerless over their own physical health...

My cellulitis infection from a week prior may not be cellulitis, or so I am being led to believe right now based upon my current symptoms.. Right now, it appears to have morphed into a DVT based upon the fact that there is a distinct red area in which there is hardness of the skin and a ball-like feeling when feeling the area. I have had clots like these several times in the past, and I have a pretty familiar grasp of how they feel/behave.

I am obviously not a doctor, but the following breakdown will be based upon the knowledge I have gained from my past medical experiences.

Here's the deal
- The symptoms of some cellulitis infections and DVT's can actually mimic each other
- In some cases, this can make diagnosing a KTS patient with one or the other incredibly tricky. One expert may say it is definitely a clot, while another may say cellulitis is the main culprit

Right now I am guessing one of two things
1 ) There was an infection, which has gradually gotten better with antibiotics over the past few days. During the healing of the area, a clot started to form ultimately leading to my present state.
2) It was never an infection to begin with and we misdiagnosed it (this has happened prior). However, since the area responded to the Avelox 400/day so well initially, I am less inclined to believe this one.

Again, I am obviously not a doctor but I will say this much: I am a student and in a week I am due to resume my college classes. The area is on my upper thigh, and right now bearing weight on said area (despite how soft it is) is extremely uncomfortable. None of my experts are there tomorrow, so I will need to wait to see how this situation evolves into Monday.

Maybe it will just disappear?

A KTS girl can dream, can't she? ; )



Friday, January 11, 2013

Hi everyone,
I got so much positive feedback on my last post and wanted to express my sincere gratitude. It's such a priveledge to live in an age in which I have this kind of platform in order to raise awareness for Klippel-Trenaunay Syndrome. Social media is truly such a blessing, especially for us KT Patients since there are so few of us in the world. For those of you who don't know, we have literally been named one of the rarest diseases by some medical outlets (Yes, we are an extremely rare breed!).

I am taking this time to continue to recover from my cellulitis infection before I go back to college full-time. My infection is getting better as opposed to worse so I am very fortunate the 400 mg/daily of Avelox has worked wonders yet again! I hope you all are well! - A


Wednesday, January 9, 2013

So the redness of the initial infection spot (the thigh) has spread its way up to the left side (KTS inpacted) buttock. The redness is the same of all my typical cellulitis infections, but there is no tenderness there as of right now.

Systematically, I still have a low grade fever and just feel tired/weak. However, that is to be expected with these kind of ordeals.

For now, I just continue on oral antibiotics unless things take a sharp turn for the worst.

So, some of you may be wondering, why do some (of my) infections require hospitalization while others do not? I will try my best to make this as simplistic as possible.
- presence of acute systematic symptoms: I have had fevers as high as 105 when I have gotten these cellulitis infections; anything over 101 typically insinuates I need the emergency room. Some systematic symptoms (temperature aside) include vomiting, extreme dizziness, intolerable pain in infected area, inability to stand, sweating profusely, having the chills, massive headaches, being dehydrated, etc.. Those are some of the main ones that have come to my mind.

Fortunately, I have not been that kind of sick since June. With this one, I just have a little headache and, once again, a low grade fever. I am incredibly sore but it does not feel like I have knives being jabbed into my thigh (and thank god for that).

I am also in extremely close proximity to the hospital. If things do go sour, it is approximately a half hour from here to the emergency room.

I am lucky, and as always, will heal.
I start school in ten days, however, so hopefully it will be sooner rather than later! - A

Tuesday, January 8, 2013

Hey all,
I'm infected again; for those of you who aren't all too familiar with KTS, cellulitis infections can be a somewhat common occurrence for its patients.
Last night before bed, I started to feel a pain in my left (aka KTS impacted) thigh. It wasn't horrific enough to do anything about it at that moment in time, so I decided to sleep and see what the morning had to bring. When I woke up, the pain was extremely tender and I knew had to take some course of action. So, I called my mom at work and we went from there.

Systemically, I was not far advanced at all which has kept me out of the hospital for this evening at the very least. I am starting oral dosage Avelox 400 mg daily and seeing how that impacts the area overnight.
For now I am just incredibly sore and fatigued, so all I can do is just sit here and await for my body to repair itself in due time.

I feel too sore to take pictures right now, but I will update tomorrow with some.

Peace and love (always),
- A

Saturday, January 5, 2013

Medically, I am still in a pretty good place with my Klippel-Trenaunay Syndrome. However, the winter season has been tough pain wise, which I was definitely not expecting; summer tends to be the season that impacts KTS Patients the most because of the high heat and humidity. While I have become accustomed to seasonal weather variables impacting my KTS, I was not even mildly prepared for what these colder months were going to bring.

While I am on pain medication (15 mg/day) that has helped tremendously over the past several months, it has not spared me of the winter tenderness I am experiencing. If I had to describe it, I would say it is almost like a strong headache in my lower leg (the upper leg is immune to this pain so it appears, thankfully) and foot.

I've had a multitude of nights when I have woken up in pain so strong that I have not been able to fall back asleep. That was until about two weeks ago, when I tried a heating pad; just a normal $20 heating pad has helped so much! Each case of KTS is obviously so incredibly different, but if any of you are experiencing similar problems, I would say just go ahead and at least try it to see if it make make your pain more bearable.


Here are some pictures of my leg from the other night. It's funny, because it looks better than ever despite how problematic it's been pain wise this winter!




How are these months treating you guys? -A

Friday, January 4, 2013


"Always be yourself. Never try to hide who you are, the only shame is to have shame. Always stand up for what you believe in. Always question what other people tell you. Never regret the past. Its a waste of time. Theres a reason for everything. Every mistake. Every moment of weakness. Every terrible thing that has happened to you. grow from it. The only way you can ever get the respect from others is when we show them you respect yourself. And most importantly, do your think and never apologize for being YOU!"

Wednesday, January 2, 2013

Hey everyone,
hope that you and your family had an enjoyable holiday (to those of you whom may celebrate). Seeing as I was almost in the hospital for XMas this year I tried not to take them for granted, even though I felt fatigued. But even though I wasn't in the hospital, I cannot seem to erase the memory of all the sick people (primarily children) I have come across through my years as an inpatient. I don't know why life can be so incredibly cruel, but I know there are children there who will not walk out of those hospital doors again, & that literally sickens me.

Please, pray for them and any others combating serious illnesses.
Sometimes, I feel silly for ever complaining about my medical state as I truly am more blessed than most. It pains me that not everyone is so lucky. - A