Here Is Where I Lay. Where I Lay is here.

Something tells me I have a vast ocean of struggles ahead of me, and I’ve really only just begun to sink my feet into the dampened sand. 

What, surprised to hear from me? ; ) I am still alive of course, just not at my desired location, which is home. Today comes with strings attached, like the many others in which I have been here; a mere venogram. if nothing acute is found, I will be released to frolic back to the place in which Dorothy, too, desired; home. "There's no place like home, there's no place like home, no place like home..."

Go where your heart desires. - Arianna

I Could Really Use a Wish Right Now

Hey everyone! I am still an inpatient at Children's Hospital Boston. While we know I need to have my foot debulked by Dr. Spencer in about a month, I also have another Klippel issue occurring simultaneously. Perhaps this one is most frustrating, as we are currently unable to get to the root cause of it despite heaps of imaging and blood tests; my back and buttock have been hurting a great deal – and this goes beyond a typical daily chronic pain level. At the moment, I am currently inundated with pain medicines like

oxycontin and oxycodone, so I apologize if my writing is not all that cohesive. One of the things I like about my Dr.'s here is that they sincerely trust me – at least they certainly seem to! As far as when to go home and what not, they are mainly leaving that decision within my anxiety-ridden hands... While emotionally I am ready to leave instantaneously, my mind is telling me this is hardly the right thing to do. Even on the hefty dosages of pain medicines, I am still sporting some abnormal pain on the previously aforementioned areas. Prior to leaving, I would like to see the pain ease up, this way I am able to make sure things are not heading in a more vile direction as opposed to a more pleasant one..perhaps within a couple of days I will be ready to pack my bags! Either way, I refuse to go home on this much pain medication as I believe that to be highly risky in terms of addiction.

I miss my dog immensely, not to mention the freedom of not being an inpatient...as I always do once being here for more than a few days at a time! One of the minuscule things that annoys me greatly are the nurses being all "you" every two hours or so about how much you ate/drank/went to the bathroom. They, of course, are just doing their job – and I appreciate that. Nurses, in my opinion anyway, are the backbones of hospitals in general... However, when they ask me those questions, part of me just wants to retort “None of your damn business! I am 23 for heck's sake!” Never in my wildest dreams, however, would I ever do something like that in ten million years! Because, like I said, they are merely just doing their job and deserve to be treated with a great deal of respect...in no way would I actually take out my internal frustration and misplace it towards them. At this point, though, I really just miss everything about home life and am anxiously awaiting the time in which I feel safe enough to resume my life there. It's about 3 AM here, and I should attempt to sleep prior to the doctors making their rounds this morning. In the meantime, however, wishing you all well! I hope this post was not too difficult to interpret given my fuzzy state of mind!

Lots of love,

Arianna

Still inpatient - brief description and pictures

I could hardly believe the words in which I was hearing; it takes a lot these days to shock me in terms of my Klippel. However, I was not expecting Dr. Alomari to say that there was nothing else he could due to temporarily make my foot/ankle feel better... At last, we had finally reached the much-dreaded point in which debulking would be required in order to gain some relief. At current, my foot feels in good shape as I am inpatient and on a slew of pain medicines. However, looks wise, it is incredibly swollen and red. I talked to the amazing Dr. Spencer first thing this morning (she came by my room) and instantaneously noticed the brilliant yellow hue of her dress, along with her fabulous shoes and handbag. I swear, that woman always has the most impeccable belongings in terms of fashion whether or not that is shoes, clothes, or the handbag accompanying her on any given day!

Anyway, as far as the ankle is concerned, she seems pretty confident in terms of being able to successfully debulk it. Although we cannot guarantee that the debulking with rid my foot and ankle of the relentless pain i've been enduring, it is our best shot at current. I am currently working with physical therapy and psych. To help with ome current issues.

I will type more later – at current, I am on a great deal of oxycontin, along with Oxycodone and xanax so I apologize if my writing is hard to understand...my head feels all fuzzy. Below are pictures of me in the past few days an inpatient(I’ve been here since Thursday). Will write more soon! - Arianna

P.S. - This is only 1 of the issues in which I am inpatient for. I will write more about what the other one is soon.

Inpatient

Hey guys - I am currently inpatient at Children's Hospital Boston. I will update more later as to why and provide more details. I have been here since Thursday morning.

Hope you all are well and enjoy the weekend! - Arianna

Amen

I copied this from a Facebook status of mine I just wrote a few minutes back. It pretty much sums up where I am at during this point of my life. 

You want to know how I honestly feel in this moment? That life is tragically and deliciously short all at the same damn time. That it is too short to spend your time around people who continuously make you upset even after you have tried to best your best foot forward with them continuously. Some relationships are worth the work, that much I believe, but there also comes a point where you have to save yourself. And, in general, those who bully others are really hiding behind a facade of low self-esteem and petty ignorance. 

So, let's put our best foot forward everyday to love one another and get along because this game of life will all be over way too soon... Next time you hug someone, hug them like it could be the last time you see them. It's so easy to take the seemingly menial things in life for granted. Later on, though, you may just realize that perhaps they were some of the most exquisite things life ever had to offer....

I for one am guilty of taking numerous things for granted, despite trying to remind myself constantly not to. Sometimes I say the wrong things, hurt those closest to me, and just flat-out screw up. All I can really do is look back on the past and learn from it and live the next day as a better person... a more beautiful one. Because beauty, truly, is skin deep. The rest of it will eventually fade away and you will be left with nothing but your soul. I love my cosmetics and fashion, but sometimes it's far too easy to focus too much attention on the outside as opposed to nurturing the true golden reserve of the body, the soul. - A

Beach Days Are Here

Not even two weeks ago, I went to the beach for the first time in 3 years. Last summer, as some of you may already be aware, I was basically a permanent fixture as a Children's Hospital inpatient from March through the end of September due to my Klippel. The year prior to that, although not nearly as vile in nature, was somewhat similar in terms of my Klippel. Rather than infections, though, I had some rather intense interventional radilogy procedures performed on me. These procedures required long bouts of recovery, causing me to miss out on the vast majority of the summer season in New England.

So, when the chance to go to the beach arose this year, I leaped at it. My particular case of Klippel is rather unpredictable, so I try my hardest to take advantage of my "healthier times" without overdoing it. Below are some pictures from my first beach day of this year. I do consider this to be somewhat of a landmark, as I was not in a sound medical state to go these past 3 years or so. I'll be writing more soon! - Arianna