Where can YOU find me NOW?

Hi everyone! While it may seem as though I have been neglecting on updating (which I have on this particular blog), I have actually created a public Facebook page in which I document my journey with KTS. As much as I love blogging, I wanted to try something new after writing on this kind of platform for several years. Please feel free to like my Facebook page and continue to keep up with my Klippel journey by clicking HERE!

Lots of love,

Arianna

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,

Arianna

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

It's All in Who YOU Surround Yourself With

Each day right now feels somewhat surreal – on January 26^th, I will be having 2 procedures done. One will be the bleomycin injections in my rectal area with an interventional radiologist who has studied under Dr. Alomari. The other procedure will be an ankle/foot debulking with Dr. Spencer. While I have had several chilling medical situations in the past, I am particularly anxious for the debulking part of the day... however I am in such a momentous amount of pain that a part of me is really just ready to get this whole ordeal over with!

A great deal of people ask me “how I do it.” The truth is, I do not do any of this alone. I have an amazing team of people surrounding me that play a huge role in helping to keep me centered. I see a talk therapist (who is utterly amazing) approximately 3 times a week. I have a nurse practitioner at the same office who prescribes me antidepressants and helps to keep my OCD in check (at least, compared to how my OCD used to be). I have parents, and not just parents, but incredibly great ones who cater to me physically and emotionally. I have an amazing team at Children's Hospital Boston. I have family members who are supportive and loving and infiltrate my veins with strength. Last, but certainly not least, I have friends and a slew of vacular anomaly/Klippel friends who breathe life into me day-in day-out. I really am not doing any of this alone, and for that I am very much so grateful...

Mom and I the other day on a rare outing for me these days - we took my walker.

It has taken me quite some time to let go of toxic people in my life (yes, that has unfortunately included some of my own flesh and blood and people I have been friends with for several years) in order to reach a calmer state. I despise confrontation, so often I would just let people walk all over me despite my feelings continuously getting hurt. My therapist, however, taught me that there is no room for this kind of energy in life – especially for someone dealing with a chronic illness as grave as mine.

So, I know this post is rather short and I have not written much as of lately, but I wanted to say thank you. Thank you for all of the people out there who have been such an amazing support system to me. And, while I do not consider myself to be in a position to give advice, I will share this suggestion: surround yourself with a good team. Surround yourself with people who are competent and kind, and truly have your best interests at heart and want to see you prevail.

That's all for now,

I will type more soon!

Sending you lots of love,

Arianna

Upcoming Debulking Surgery with Dr. Spencer

"Sooo...this is the moment where I could look back on my life and say this is where it all went downhill, the great demise began..." I asked, my gaze meeting hers. "Yes." She said.

DEEP. FUCKING. BREATHE, ARI, DEEP. BREATHE.

"Okay, papers please."

"You are absolutely sure?

"Okay, i'm ready to sign."

I signed because despite all the complications she described, it was that or stay at the state I am at now that will only worsen and will lead to no mobility and being dependent on pain meds. So whatever happens from here, I am choosing my best shot at a FUNCTIONING life. For me that does not entail hopping from bed to couch and hallway to bed... that is no way to live for me. I am going to be an OCD specialist, and the best damn one in my field someday, just you wait and see ( : and if not, I died trying to obtain something I loved and believed in to the core. And, I may even get to look fabulous in a pair of heels (sp?) doing it ; ) I would be lying if I said I was not riddled with anxiety over the procedure, however.

Dr. Spencer will be doing a debulking surgery on my ankle and foot on January 26th.

Below are just a few pictures from my hospitalization late December that I promised to post a few posts back. I was hospitalized for Cellulitis in my buttock/thigh region. Sending you all so much love! - Arianna

The Power of Makeup...

Interesting story behind the picture below... When it was taken, I had a temperature of 103. I was in the hospital for Sepsis for weeks and my sister's wedding took place while I was still inpatient. So, the hospital (my doctors) gave me a day pass to go to the wedding. You would never know it, but I was so incredibly sick in this picture. I had to be back at the hospital by midnight and was loaded up on a slew of pain medicines to get me through the day. I tried my best to act fine as it was the most important day of my sister and brother-in-laws life thus far, and I did not want to spoil it with my illness; I did not want the attention of me on the biggest day of my sister's life... I had to be back at the hospital by midnight, and felt so incredibly sick throughout the entirety of the day. Still, I did my best to conceal how sick I felt as it was important to me that the focus was on my sister and brother-in-law's big day and not my Klippel. In retrospect, despite how sick I was, I am so glad I was able to be there and that the hospital worked with me to make it happen. It was the first wedding I had ever attended, and to witness the look of love on my sister and brother in laws face at the alter made it all worth it. I would do it all over again despite how sick I was... yet looking at this picture you would never know I felt like I was dying on the inside. Just goes to show what wonders a professional makeup artist and a nice dress can conceal! - Arianna

Click HERE to visit my professional FB page where I update constantly in regards to Klippel and Chronic Illness alike. XOXO - Arianna