Saturday, October 25, 2014

I'm Back

Hey, everyone. I hope you are are genuinely well. I apologize for not updating for quite some time; I've been on a bit of a roller-coaster lately in terms of my mental and physical health. My last surgery did indeed take place, but went horribly awry in some aspects. It was nobodies fault by any means, but it turned into an 11 day stay at BOston children's hospital as opposed to that of of maybe day surgery or 1 or 2 days inpatient. 

Writing is something I have been incredibly passionate for several years now; the entirety of my life I have felt misjudged by the vast majority of my colleagues in a slew of ways. With writing, however I get to reflect and present myself in a way that I am too awkward to do so in a verbal manner...that, in itself, is incredibly cathartic to me. I also write about issues I am exceedingly passionate about like having Klippel-trenaunay syndrome and the ways in which it has impacted my life thus far. Mental health is another topic readers will see me discuss frequently; why does it take Robin Williams (May God rest his soul) killing himself for depression to make headlines? While many were aghast that such a loved man could not find strength to hold on, the truth is this disease impacts mere mortals everywhere. 

I look forward to sharing some of my experiences with you as my far as my Klippel, mental illness, experiences at CHB, and other personal matters are concerned. You will never see me holding a scalpel or be behind the laser of a machine that has helped save my life numerous times, but I hope to save lives in a different way. That is what envokes a burning flame within my soul. I have found my passion throughout the past several years, and despite my obstacles I hope to achieve them. 

In the meantime, though, I do believe in the kindness of strangers as the Klippel family has kept me afloat on many of my off days. They are no longer singers, but treasured friends despite where they end up on this sometimes rather unpredictable, jagged journey.

When I started this post, it was my first time writing since my last one. I was not even quite sure I would be able to construct a simple sentence let alone write in paragraph form...here is to hoping this what edible in content. 

I greatly anticipate writing incredibly soon,
Ari

Friday, September 26, 2014

The Significance of October 1st

Hey everyone! My next surgery is this coming October 1st. I am not afraid of the anesthetic part, as I am rather accustomed to that by now. I do, however, have other reservations in regards to this surgery... This particular surgery holds a great deal of sentimental value to me because of its location. When walking, my inner butt-cheeks swipe against each other and it is so incredibly uncomfortable. What if this does not correct that? What ifs, I know from my my psychological studies and therapy sessions alike, stem from anxiety. In the long run, what ifs will get you no where good, that much I have learned over the past few years.

Even when this particular area is not being touched, it feels as though there are sharp pains going through it. It does not impact my vaginal region, but merely the area directly outside of it. It stems from the anal region. Someday, when in love, I hope to be able to express it to the person in which I am with through my body. My sexual abuse history not included, I am indeed a virgin and have no shame in that. My body, more often than not over the years, rejects my own bacteria for a living. To have someone else's bacteria enter that region so close to where I get infected (my buttocks most often) is a risk and I have to be careful about how I carry myself. I do not believe in settling, but rather believe in waiting until love. Not only does this correspond to my own personal morals, but to help keep my Klippel as tame as possible.

So, in essence, this surgery means a couple of things to me: the biggest one is alleviating the amount of pain in which I am in on a daily basis. I do not take any pain medication for this aside from meloxicam (an NSAID)  on a daily basis which is meant to help me walk on my lower leg without being in treacherous pain. Aside from the pain factor, I want to help alleviate the rough texture and pain in this area so that I can be sexually active someday when the time is right. My main priority is undoubtedly the daily pain, but it is hard not to think of my future with a man as well.


Aside from this, I will be having some c02 laser done to help with growths scattered across my buttock regions. I have had this done a multitude of times before so I am not scared of the this particular procedure. Perhaps the only thing that scares me is that the open areas act as an opening for infection, but Dr. Alomari has agreed to throw me on a prophylactic for approximately 5 days. I feel he tends to be more conservative in terms of antibiotics, so I greatly appreciate him agreeing to do so.  I'm allergic to 3 classes of antibiotics and often grow resistant to some, so throwing me on antibiotics is not as simplistic as it may seem. However, due to my past with sepsis, I think he is willing to do so. Not only that, but I do believe he wants me to feel more at ease and less worried about acquiring an infection following this procedure. He is, indeed, a wonderful doctor in every way in which one could be.




In the meantime, I have been dealing with a clot (which we suspect to be deep as the lidoderm patches did nothing to help ease my pain). I have been dealing with this particular issue since Saturday, and it has been rather difficult mentally as I did want to have a bit of fun prior to the surgery. However, it hurts to walk down the hallway so gallivanting to do random errands (which, sadly enough, I consider fun) is not feasible.



Emotionally, I am still struggling despite ongoing and continuous therapy sessions. The other day, after leaving a session, I took the elevator down to the first floor (where my car awaited me outside) and fell to the floor crying. It felt as though the room was spinning, and that all the oxygen in the room had evaporated. I should mention that I think highly of my main talk therapist; she is helping me in ways no one has ever helped me before. She is amazing, and I wish it hadn't taken me so long to find her. Still, I do have something entitled borderline personality disorder and my mood varies greatly at times for seemingly no reason at all. Somedays, I awake crying and can hardly find the volition to get out of bed...daily living is a struggle. Separating reaction to an ongoing illness versus mental illness is no easy challenge, and yet I finally feel as though I have found a team that has managed to do so. I would be lying, however, if I said that Klippel did not play a role in my mood...I do not think any professional would deny that. There have been countless studies on how chronic illness impacts the brain, and this illness has been going at me since birth.

I will end off here for now, as I have another therapy appointment I need to be up for early tomorrow. It feels like Wednesday is an eternity away, but I do believe it will be a step in the right direction. For now, I am merely trying to get through the next 4 days as best as I can, emotionally and physically speaking.

I sincerely hope you all are well...truly, I do. I have not been on my personal fb page nor answering barely any phone calls as I have been an emotional wreck. I know I am not the first person kt go through this and won't be the last... We just have to keep hanging in there, I suppose! Also, please, never be scared to ask for help if you feel you are struggling in any manner. There is no shame in merely asking for someone to help you navigate your way through life in the midst of a difficult time...

Just wanted to extend a sincere thank you to those who continue to believe and support me.

Love always,
Ari

Sunday, September 14, 2014

Imminent Surgery

Hi everyone! I have not updated in a bit as I have been rather busy maintaining my health (both emotionally and physically speaking). The picture in which you are viewing is not exactly the most pleasing to the eye, however it is a picture of the growths in which I am going to have operated on soon by Dr. Alomari from Children's Hospital Boston. These growths, despite how minuscule they may look, are prominent in a rather unpleasant place (further explained in my previous post "Underneath Your Clothes") Due to their location, I have an extremely hard time wearing underwear. Not to mention, they are located in an area that is incredibly sensitive in terms of nerves and sitting is rather uncomfortable... I am in a constant amount of steady pain. No matter what location I position my body in, they tend to hurt a great deal. I am not on any pain medicine to alleviate the ache as this is a chronic issue. On a daily basis, I take an NSAID called Meloxicam which has helped momentously in terms of being able to walk on my leg. Prior to discovering that medication, walking in general was an arduous task so difficult I thought I would be wheel-chair bound for the remainder of my life. However, this medication does nothing to alleviate the vast discomfort of these growths. Located beneath the surface of these particular growths is a lymphatic malformation (which, of course, stems from the Klippel Trenaunay Syndrome), so we are not quite sure how they will respond to the injections in which I will receive during the imminent surgery (I do not yet have a specific date, but it should be happening prior to this month's end). I have been informed that this surgery will likely be the first in a series to help alleviate the discomfort in this area. 

In addition to these growths, I also have a slew of others that are larger in nature that are scattered on my right butt-cheek and a couple of other various sensitive places. These particular growths will be removed using c02 laser, which I have found to be an extremely successful method in eliminating growths of these sorts in the past. Recovering from c02 laser can be a bit of a hassle, but I have found that it is worth the end result. My biggest concern, in terms of the c02 laser, is acquiring a cellulitis infection. Sometimes, my body skips the cellulitic route and heads straight to sepsis despite me seeking immediate attention upon symptoms of an infection first occurring. To be rather honest, I am haunted by the memory of the multitude of times I have awoken from a night of slumber with a 105 temperature and massive infection. Despite rushing to the hospital immediately, I would find out I had a massive cellulitis infection or was septic. It is not uncommon for me to have dreams in which I relive past experiences concerning serious infections and what not; in fact, these memories slip into my dreams more often than not. I will update again shortly, and appreciate all of the positive feedback I receive in terms of these posts immensely. To have the support system I have is indeed a blessing, and one in which I do not ever want to take for granted. Below is a picture I took last week summarizing some of my feelings in regards to conditions of this sort. I will have more of these to come featuring a dear friend of mine (who also has a vascular anomaly) in an upcoming post.
May you be well,
Arianna