Saturday, January 17, 2015

It's All in Who YOU Surround Yourself With

Each day right now feels somewhat surreal – on January 26th, 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,


Monday, January 12, 2015

Upcoming Debuling 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.


"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

Tuesday, January 6, 2015

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