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,

Saturday, August 30, 2014

Appointment at Children's Hospital Boston with Quick Video

Here is a brief video I shot the other day while making my way up to the IR clinic at Children's the other day with Dr. Alomari. Being at the hospital (for the first time since my month long June admission) ignited a lot of vile emotions for me; despite knowing I was safe and my condition stable, I could not stop shaking throughout the several hours I was there. I will be updating more soon about the appointment and what is to come for me in the near future! Hope you all are well. - Arianna

Thursday, August 21, 2014

Glimpses of Happiness

I am so accustomed to writing about my difficulties on here that I quite often forget  to post something uplifting – which, from my own personal standpoint, can be somewhat easier said than done when in the midst of internal frustration; at times, these internal frustrations seem as wide and unwavering as the ocean itself...

I am not merely a young woman who everlastingly wanders around aimlessly engulfed in a dark, enigmatic, down-trodden haze- that is not the kind of person in which I envision myself as. For the past 10 years or so, I consciously concealed the vast majority of my emotions – deeming them to be innocuous in nature, and that (in vain) led to an overflowing affectionate burden these past few years.

I was, in retrospect, a balloon simply waiting to burst... it was not hard for my tight-circle to envision a mental decline at the time due to years of harsh experiences battling Klippel in addition to having an overly-sensitive nature in terms of acquiring “perfection.” From my acquired knowledge in the psychological field, my deep-rooted psychological issues stem from a cocktail of environmental circumstances and genes. As a dear and undeniably competent Psych. Professional once told me, “not everyone who has chronic illness has a mental illness, too.” These are words in which I would like patients and parents alike to keep in mind. I happen to have Klippel-Trenaunay Syndrome and Borderline Personality Disorder (the latter falls under mental illness for those who may not be aware). While dealing with the emotional residue of my life thus far these past several years, I have experienced some of my worst demons in terms of Klippel and its vile symptoms. Life is not particularly easy, but on a grand-scheme world perspective, it is not all too bad, either. I am sitting here, in the comfort of my bed, wearing cozy slippers and eating freshly-picked Raspberries while the sun hides beneath the evening sky, preparing itself for yet another heat-ladden summer day. Gazing around my room, I see a momentous amount of pictures – ones that remind me of how blessed I am in terms of the delightfully radiant, colourful people I have met along my journeys and the places I have been fortunate enough to visit by some minute granule of fortune.

That is not to deny or downplay my problems, as that is in no way my intention. Many who have kept up with me in personal life, on here, or through some other social-networking platform know I have been rather vocal about my plight with Klippel. Whether it's been combating Septicemia, Cellulitis, Thrombophlebitis, a mere superficial clot, relentless chronic pain, countless surgeries, it feels as though I have circled the Klippel drain a multitude of times. The sentence above, however, merely details the physically apparent burdens of my life thus far. I have also flirted with deep periods of depression, OCD, and suicidal thoughts (behavior too, as noted in my posts prior). And, at this very moment, I am experiencing a bit of a lousy (and rather painful) bout with my Klippel that will undoubtedly lead to more surgery this upcoming Fall season.

Yet, with the great assistance of those around me (rather that be professionals, family, or friends), I continue to prevail in life – in the sense that I am still living it! Not only that, though, I live it to various emotional extents – sometimes, perhaps when I am least expecting it, I feel as though I am somewhat naturally high on life (admittedly those moments do not come nearly as often as I would like). Perhaps my fondest memory since my last hospitalization (I was released at the end of June from Children's Hospital Boston after approximately 27 days inpatient) is that of watching the Sunset while driving my Dad's 1980 gold-vintage Trans Am at a rapid pace (music and speakers in tow) while grazing the landscape of the tedious 93 highway... I love that little things like those can still ignite a light so rampant within me – and at those moments, I feel as though I am on top of the world, truly... It is as though I can see my problems and hindrances for what they are in the grand-scheme of my life, and in that time period I find my own volition to not only keep living this life – wherever it may take me - bad or good, but to honor it.

Below are pictures from July and this month. You would be rather surprised how emotionally vulnerable I feel in a multitude of these pictures, despite my put-together outward appearance. In someways, it's a facade that I must maintain (while amongst strangers) in order to delve back into society until I am fully comfortable around others once again... My mom is rather good at inspiring me to get out and about despite pain and mental agony. It is my job, however, to determine my overall symptoms on that given day and examine whether it is in my overall best interest to go out or not.

This was supposedly to strictly be a picture post – with perhaps a couple of fully-constructed sentences as narration. Clearly it did not turn out that way! I am writing this in the middle of the night, so hopefully this piece of “writing” is coherent in some way or another... = X Anyhow, though, I hope you all have a lovely day and would like to thank you sincerely for reading what I have to write... I read each and every comment posted here and many of them have touched me profoundly... In terms of social media, I am a dedicated Facebook user and can be found under the username of Arianna Helena.

Until next time,