A Little too Hellish

"But I didn't really mind because I knew that it takes getting everything you ever wanted, and then losing it to know what true freedom is."

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Confessions

I was hospitalized this past week for a Cellulitis infection. Although, I do not feel as though I can call it that accurately without adding there was some controversy as to what it actually was from the Klippel expert himself, Dr. Fishman.

He will tell you he “simply doesn't know” in terms of whether or not it was a Klippel valve bleeding into another nor an infection. All I know is that I was on the phone with the VAC Clinic Friday with a dear VAC nurse I have known for quite some time now. She told me if it started to spread (the legion) or (got worse) than I could page the surgeon on call or come in. Unfortunately, things progressed in an unfavorable manner and the red, aching legions spread rampantly Friday night. I asked every person I met in the emergency room that night whether or not they were associated with Dr. Fishman and if they were, whether or not they deemed this an infection worthy of antibiotics. None of them hesitated in saying yes, we need you admitted and to treat this “infection.”

I escaped the hospital scene Christmas Eve and was elated to leave the downtrodden venue. There was one goodbye I did not say upon leaving though, it was too hard and I could not submit myself to it right then at an emotional level.

While there, I met a girl who was a Klippel Patient struggling for her life. We had contact prior, but this was our first time having physical contact. She still is inpatient, actually, and tells me she will never be released... One of my least favorite nurses I've ever had would not allow me to go visit my ailing friend a mere three floors beneath mine. Generally, I respect nurses and their word and would not forbid it. I explained to her the urgency of the situation and still, she resisted understanding my plight in a seemingly spiteful manner. She kept saying there was a person above her in the system she had to ask, as though she were referring to some vague deity... Nurses prior to her and nurses after her would instantaneously respond yes when I would ask to visit the ICU to see my sickly friend, but this one was different... Perhaps she lacked emotional decorum so vital to someone in her profession that I should feel bad for her... I hope to never have her again, she was uncouth in her actions and lacked sympathy.

I kept asking her, and finally she told me that the answer was no, I was to forget about it. I phoned my friend and spoke with her sister and told her what my nurse had said. Still, that would not be enough to contain me. Well, this nurse had 3 or 4 patients to deal with simultaneously and not enough time nor resources to keep me on lock-down. So, I snuck down to ICU to see my friend where I was greeted by my friend's ICU nurse that day. She was so kind that I had to disclose to her what me being there in that moment really entailed; lies, sneaking off my floor, and a seemingly spiteful nurse who would probably kill me if she found out where I was. 

I prepared to get a good verbal lashing in return, but the opposite happened, much to my surprise. “Thank you,” her nurse said. “Thank you for being here. She got so excited when she found out you were coming.” We shared a smile and she helped me conjecture a plan in case I were to be caught by my nurse; I could not believe the lengths she would go to in order to help me see my friend! Her heart was certainly in the right place, and she knew that treating my friend did not just need to happen in a medicinal manner... That's what separates a nurse from a good nurse, though, and I am proud that I did not let my vile nurse that day hinder my efforts. I never got caught, by the way. ( = Normally I would not brag about rule breaking but this is indeed an exception to the rule!

She slipped me into the plastic yellow protective gear one must wear while visiting a friend who is on precautions with outsiders. I was well-acquainted with this gear as usually I was the one on contact precautions. I gladly slipped into the yellow suit, mask, and gloves for a chance to see my friend yet again. She was unable to move, and her breathing was as unsteady as could be. In between breathes, she managed to speak her depression to me. She told me that “she was planning her own funeral” and burst into an explosion of tears. Where words failed, my hand didn't. I immediately reached out my hand for hers, and latched on tight. I don't know if there is much else in which I am willing to share of that moment...but damn, at that point you realize there is more at play here in life; there is more than that dress you want but can't afford, than the number of tiles on the ceiling, than how many pounds you lost in the weeks prior... I have had that realization prior, but sometimes the feeling wears off and one is reminded again...

Not many people will understand it, and seeing someone so close to their end demise (for me) is much different than coming back from those times where I almost died. Perhaps because I am at a more alert level...

For any reading who question the validity of this story, I can easily tell you the patient's name and where to find her/her family online but I won't. The Doctor's at Children's would know that at the very least I am speaking of a real patient for I spoke/wrote to them about her while inpatient and they are the ones treating her. I was, however, met with blank stares and non-relies as they are under confidentiality when I tried to ask what more they could do for her. She is a very difficult case for them right now. And, of course, the nurses reading it would know what happened. I am not worried about the validity of my story, though, as much as I am for the patient's well-being. Notice how I emit details regarding people's appearance...for my goal is not to cast trouble or assign blame upon anyone. Her fate looks bleak and if there is a higher power, I call on him, her, it to heal her.

These are my confessions, for now. And I'm not sorry. I would do it all over again, for sometimes breaking the rules means being a better human-being and those dictating them simply cannot empathize with that.

I'm home, albeit in a ton of pain physically and emotionally. I feel so trapped, which is why I write. When I write, I have a chance to tell my truth, and perhaps it can help people to understand me better. I still believe that some of the best stories, though, are the ones untold...or the ones that are happening between the lines.

In case you have not yet come to figure this out, this blog is greatly uneven in content... I write very little about Klippel itself and more about the emotional journey it has led me on. KissesforKTS is more than just about garnering awareness of Klippel itself, but all of the components that come attached with it....

I will post some pictures of the hospitalization in my next post.

LOVE to you all,

Ari

A Bucket Full of Sorrow

Hello everyone! I have been feeling rather glum as of lately, partly because I struggle with mental illness and the other reasoning being my Klippel. I do not feel ready to undergo a surgery of the debulking magnitude in January, but I know it is more than likely a great leap forward for me as opposed to a step back... whenever I feel pessimistic about the surgery, I remember that the benefits may greatly outweigh any risks.

One of the issues I have been dealing with lately is utter fatigue – my body is so tired, constantly, which can be attributed to numerous circumstantial things I have happening within my life. A great deal of my friends no longer live in the area, and that in itself can leave my feeling rather lonesome – but I am doing my best to get on despite the constant loneliness in which I often feel.

As far as dating, I am not doing much of that right now as my primary focus needs to be on my own well-being prior to surgery. That may sound rather selfish, but it is the reality of my life at this point in time. Still, I must acknowledge that I do have a multitude of great friends in my life – many of whom I have met through the Vascular Anomalies community – who help to keep my spirits up. I only wish they lived closer!

If you are on Facebook and would like to join my public FB page (Arianna Faro- A Limp At A Time -an extension of this blog) please feel free to do so and find the page by clicking HERE. Much like this blog, I talk about issues such as Klippel, Chronic Illness in general, and mental illness. It also gives a tiny glimpse into my personal life – as well as a large glimpse into my life with Klippel.

Hope you all are well!

Ari

Welcome to The Holidays

Hi there, everyone!
It's that time of year again, isn't it?
Only I cannot remember even a mere speck of time from this season last year - I was inpatient at the hospital. This year I am home - which means I am free- depending upon how you interpret that word. Things around me have been crumbling in terms of my foot and some other lovely Klippel areas.

I am due to get debulked on January 26th.

So, while being home for the holidays is a sweet desert of the finest taste, it comes with some restraints. I do not want to get debulked - but it is time to get the deed done. I will be in the most capable of hands, Dr. Spencer of the Vascular Anomalies Team. If you have ever met her, then you know there is no other way to describe her than, well, fierce as hell. And yes, I mean that in the best way possible.

Oh and guess what? I have a niece - my first ever! - due this May. If that is not motivation to get the surgery done and over with, I don't know what is. Talk soon! - AH

"Hold On"

"Make it to the end
It will better you very soon, oh yeah
Rely on your friends
They’ll get you through
They’re there for you, oh yeah
Hold on
And suddenly you find your way

Hold on
Till yesterday is far away
Don’t let it get you down
It will bury you, very soon, oh yeah
Come into your own
And then let it go
Don’t you know, oh yeah
Hold on
And suddenly you find your way
Hold on
Till yesterday is far away

When you’ve had enough of everything
All is left is let it go
Hold on
And suddenly you find your way

Hold on

Till yesterday is far away

Hold on
And suddenly you find your way
Hold on
Till yesterday is far away"