Monday, March 2, 2015

Some Debulking Pictures

Hey all! Here are some debulking pictures from a few weeks back. I had my ankle debulked by the amazing Dr. Spencer at Boston Children's Hospital. The first 2 pictures were taken by her during the procedure itself.

What 50,00 Views Means to Me

50,000 views may be such a miniscule amount for the vast majority of the world in terms of viewing number or readership, but for me it is somewhat of a milestone. Why? Probably at somewhere around the 25-35 thousand view mark I was taking my life into my own hands by making some poor decisions happening behind the closed door of my bedroom.

Alcohol and pain medicine, anyone? For me, it was probably what was for dinner at least half a dozen times in conjunction to mixing the perilous cocktail with xanex a slew of nights. Other nights it was merely Xanex and alcohol. I was heading down such a self-destructive path. It was absolute chaos that ensued following a lifelong stint of trying to kick this little-known disorder in the butt (no pun intended). I hated myself for the mere fact that I existed. That's my ugly truth, and I have hesitated to say it on a public media forum for some time now. But while the sentence, “I hated myself for the mere fact that I existed” may be simple, the aggravating components beneath the self-loathing statement were anything but.

It made no sense to me really for I fought for so many years to live, and not just to live, but to live a life with vigour and adventure...My mind was so inundated with depression and many of its closest friends (hello, OCD) that getting up and getting dressed on my healthiest of days became such a gargantuan burden. It was an utterly hard time for me and my head was absolutely spinning. In taking those drugs in the manner I did, I was crying for help, I just didn't realize it at that particular point in time. I was struggling with growing up and accepting my reality and what had happened to me, and at the end of the tunnel I could only see ominous colors; why fight to live if the rest of my life may resemble the horrors of the past? At that point in time, I was a passenger on a never-ending merry-go-round ride that consisted of Sepsis, surgeries, and hospital stints all relating to Klippel. Then, in the midst of all that, I was struggling to fight through a different battle: major depressive disorder and anxiety gone rampant. Between fighting all of these negative elements, I became absolutely exhausted. I had the best Klippel Dr.s and a great mental health team but still felt enslaved to these conditions each moment of every single day. As one of my Dr.s who did Graduate work at the famed University of Cincinatti said, “mental illness does not always accompany a physical chronic illness.” For me, the two were blending together and creating a vast image of disillusionment that solely consisted of hopelessness for the future.

However, I came clean about my usage after another month long hospital stint for being Septic this past June. Now, at 50,000 views, I am struggling to recover from my latest debulking surgery. And although I am still grappling with the throws of Klippel, I have evolved into a better person than when I initially started this blog. I have come to accept myself more, and am learning that I do indeed deserve nice things to happen to me. I am learning that I do deserve love and acceptance and people who treat me nicely in my life. It has taken me a long time to get to this point of learning to accept myself, and I am not fully there just yet. However, I cannot wait to see where life takes me within the next 50,000 views!

Thank you for all of the love and support in which you all have shown me. I am having a particularly tough time recovering from this debulking surgery, but I have a support team that cannot be rivaled.

Lots of love,

Thursday, February 19, 2015

Where Have I Been, Anyway?

Well, I will (attempt to) summarize:

About 26 days or so ago, I was rushed to Children's Hospital Boston with a surmised Cellulitis infection on my foot. I stayed inpatient until my surgery five days later while receiving Vancomycin through the IV. The initial surgery I had was a debulking of my ankle done by the (in my eyes) infalliable Dr. Spencer on the Vascular Anomalies Team at Children's Hospital Boston. She's an absolute rockstar, let me just begin by saying that much (my version of one, anyway). Then, a week later, I underwent Bleomycin injections in my private region with Dr. Alomari. I do not quite think I  need to say much about him in this post, as I think readers already know how superb I think he is as both an intellect and human-being alike (based upon previous posts). It's time for me to gush about Dr. Spencer, now. ( = A week after that operation, I endured a 3rd surgery within 3 weeks, this time under the scalpel of Dr. Spencer and her incredible team. There was a slight issue with 1 of the 2 drains getting stuck, and we needed to go back in and get it the heck out as it posed a very ominous threat to my health.

So, yes, I just underwent 3 surgeries within 3 weeks time along with a cellulitis infection (and some more standard medical complications in a mere matter of 3 weeks). It's been a journey, a ride, and I am absolutely inundated with copious amounts of EXHAUSTION. I arrived home not even two nights ago by ambulance.

But, how is that damn foot of mine we debulked, anyway? Well, it's phenomenal. Truly, it is. And I attribute that mainly to Dr. Spencer and her kick-ass self. You know what I love about her? The way in which she not only works wonders with her scalpel, but the way in which she was so incredibly dedicated to her craft even after the surgery. So we are about to get four feet of snow in a couple of hours and she has to be in work in Weymouth... & She STILL wakes up at 4am to come and look at the wound and just chat in general with me at my bedside. And this, may I add, was not an infrequent experience... she was consistent in showing up, being there, and nourishing my mind with positive thoughts and seeds of knowledge and inspiration. She would phone in if she couldn't be there in person. Her life perspective, her work ethic, her work skills, all an A+, undoubtedly. 

Below is a picture of me with undoubtedly one of the most inspirational woman I have met thus far on my journey's while inhabiting this Earth: Dr. Spencer! She was so incredibly kind when I asked for a picture. This was taken just prior to the debulking (1st surgery together). 

I have so much more in which I will update you all with soon, including loads of pictures from my 23 day inpatient stay at BCH and stories/opinions galore. I apologize if the writing of this particular article was sub-par, truly I am. At this point in time, I am just incredibly fatigued but the foot itself looks and feels ten times better than I ever could have imagined at this point in time. 

Lots of love and may you all be staying warm! - Arianna Helena