Wednesday, April 23, 2014

My Responsibility as a Klippel Blogger

Despite how it may appear, this site is not just dedicated to the trials and tribulations of Klippel. My intent, upon starting it, was to garner awareness and to document my story with this condition, whichever way in which the tides may have turned. A lot of my continual readers are used to reading about me in the midst of some form of medical chaos, as the vast majority of my life I have been.

These days, however, I have been outpatient for approximately a month and a half and in some ways it has been utter bliss and the reprieve in which I so desperately needed. However, my mind and body are not yet connected in spirit, and I am working vigorously on that. Sometimes the smell of something as menial as plastic will bring me back to a certain time in the hospital, or I will have a nightmare in which I am being rushed back in to the ER at 2:30 in the morning. Mentally, all of this has been rather taxing despite being on antidepressants and receiving talk therapy. Although, I have just really started up the talk therapy again in recent times, so perhaps it is not fair of me to say that. My psychologist is on vacation this week so I will not have a chance to meet with her until the next one.

However, speaking in terms of my Klippel, I attribute my current success as an outpatient to the Sirolimus in which I have been taking. While it may give me unpleasant facial and body acne in which I have never had prior, it has certainly played a vital role in stabilizing my health. I am due to write another “Sirolimus Diaries” entry soon, so if interested please keep an eye out for that. As of current, please know that I have not been this healthy (in terms of my Klippel) in quite a while and am savoring the moment. I am trying to become reacquainted with home life as I have a rather positive feeling I will be here quite longer! Until two weeks prior, I actually left a hospital bag packed with all of the essentials I would need in anticipation of another infection creeping upon me when least expected. That bag, the same old rusty one that has accompanied me on multitudes of inpatient stays, lays about 5 feet away from me as I type this. It is empty, and I am quite confident in leaving it that way, at least for now.

While I feel compelled to document my struggles with Klippel, I also feel a deep responsibility to record my successes as well. While each case of Klippel varies, perhaps it will give some parents, patients, and specialists alike hope in times of hardship.

Below are a few pictures of recent times. May you be well, and if not, embrace the inner hope within to stay strong and fight your battles. - Arianna


Wednesday, April 16, 2014

For the Love of a Daughter

I sat there in the abandoned waiting room tampering with my phone as my right leg continued to shake out of a seemingly perpetual nervous habit; I was feeling especially queasy that day and intensely vulnerable. It had been an incredibly rough week emotionally, and I knew I was going to have to talk about my battalion of pent up emotions that day at my talk therapy appointment with my Doctor. For two days prior, I stayed at a welcoming friend's home as dad and I had gotten into a rather nasty verbal row. The specifics of what were said are not relevant; rather, what is, is the underlying emotions we were both feeling and the way in which we chose to manifest them. After the fight ended, I decided it was best for me to pack my bag and go somewhere else to gain some distance for the situation (and possibly some clarity).


Let me just preface this next segment by saying I can only imagine what being a parent is like; on any given day, I have enough trouble taking care of myself as opposed to adding on the responsibility of an additional human-being! Then, you find out that child, your child, has one of the rarest conditions in the world, and there is little in which you can do to quell their physical pain. Now, add two additional children to worry about to the concoction and the financial stresses of maintaining a family in today's economy and (in my absolute biased opinion) it is enough to make anyone implode to some extent. Not to mention, society still portrays men as the gender who are supposed to be the “tough” and “stoic” ones by nature even in direful situations. A man crying is considered a weakness, which it absolutely should not be. Women and men have feelings, only it is more socially acceptable for women to express them (which is absolutely ludicrous). That, however, is another rant for different time.

For 9 years straight (up until now, age 22), it was not atypical for my dad to receive calls in the middle of the night (while at work) about me being rushed to the emergency room due to some horrid cellulitic infection. Prior to those 9 years, I had somewhat of a medical reprieve for a quite a while aside from some scattered strenuous surgeries and blood clots. As a baby, I was septic and had some major surgeries as well, but my childhood was relatively normal.

Nothing about my life in the past 9 years has been normal, though, as my condition continued to deteriorate despite several methods of medical intervention; I cannot even imagine the hurt and angst a parent must feel having to bare witness to this all. And yet, my dad was present for all of it. Sometimes, he was the one who would drive me to the hospital when I was incredibly ill, and he made sure not to go too hard over the road bumps as they killed my infected buttock area. He came up to the hospital practically every day (unless working one of his 3 jobs spoiled his ability to do so), and was constantly on the phone with me. While I am not a parent, I can only imagine how utterly petrifying all of this has had to be to my parents over the years.


When my dad and I had been fighting days prior, we threw a slew of hurtful daggers at one another. The content, as I said prior, is not what is relevant here. What is, though, is the underlying emotions that evoked our grotty scrap in the first place. Anger, psychology claims, is a secondary emotion one resorts to when trying to “protect ourselves from or cover up other vulnerable feelings.” The primary emotion at play here, I believe (on both ends) was an accumulation of massive fear. For the first time in a long while, I was physically healthy. My antibiotics along with the Sirolimus appeared to be working in conjunction with one another, as I had been out of the hospital for a month now! While we were astounded by my progress, I believe my family and I carried a large amount of fear that my health could be zapped away at any given moment. We were not used to experiencing medical bliss, and it was hard to feel as though the grim reaper wasn't always a single step behind...

Shortly after we resolved the fighting, I asked my dad what word came to mind when it comes to my Klippel. Nonchalantly, he stared up at me from the television couch and said “heartbroken.” Well, that made two of us, anyway. What he didn't know was how badly I wanted to shield him from that pain, to erase all of his most haunting memories that stemmed from my medical condition throughout the years There was still so much left unspoken, on both ends of the spectrum. I told him about my talk therapy appointment that upcoming Friday, but did not think there was any chance of him actually attending. For one, my appointment was at 11 AM and he did not get home from his overnight shift until approximately 1030 AM. Then, he was supposed to go meet various vendors for my parent's seafood business. He said that it was highly unlikely he could make it and that Fridays were the worst days possible as far as his rigid schedule is concerned. So, that Friday, I drove to the appointment myself and expected to be speaking with the Doctor alone, as I usually do.

As I'm tooling around with the picture APP on my phone, I hear the entrance door to the office crack open. It caught me rather off guard, as it was so quiet in there one could hear if a mere penny dropped. Then, I look over to realize it is my dad, fresh out of work, still in his uniform. I would later go on to say “I would have expected Hitler to rise from the dead more than him coming today,” in my appointment. “God forbid,” my therapist replied. My dad and I each talked (and listened) a great deal in the appointment and learned how to have a more healthy relationship with one another by way of communication and respect.

Upon leaving the building, I thanked my dad for coming that day as I knew it was no easy feat for him. The longevity of the appointment was 2 hours and threw the entirety of his work day off schedule. I was also overwhelmed by several positive emotions for the first time in a long while... I had a dad who genuinely cared, I was one of the lucky ones...he was willing to fight for me. I reached out to shake his hand, but instead he embraced me. We had made it through another storm, and suddenly I could see the Rainbow peeking out from the other side.

Tomorrow, April 17th is my dad's birthday. It is a day I hold near and dear to my heart, and will treasure until the day I die. Despite whatever silly disagreements we may get into every now and then, our love is genuine and cannot be replicated. We share a bond that most fathers do not have with their daughters; we know how to make each other laugh in a way in which no one else could possibly understand.


So, here is to you, Matthew Faro, for being the best dad in which I could have ever fathomed. Thank you for all of the sleepless nights you spent with me in the hospital, and for all of the hard work in which you have done to keep us all afloat. Your work ethic, as I have always told you, is of great inspiration to me. Many a time, people ask me how I have always gotten such good grades or managed to get through one finicky situation or an other, and I always tell them that you are my strongest motivation. Happy birthday dad, and may this year present you with a lot less stress, good health, and endless heaps of happiness.  - Arianna

Tuesday, April 15, 2014

Some New Klippel Pictures

If you are my friend on Facebook, chances are you have already seen these as I posted them a week or so ago. I took them rather spontaneously after a brief night out; I apologize for any background mess that is in the pictures! Usually I am rather uptight when it comes to keeping my living areas clean, but of course this was the one time I wasn't. Anyway, without further adieu...










- Arianna Helena