Where can YOU find me NOW?

Hi everyone! While it may seem as though I have been neglecting on updating (which I have on this particular blog), I have actually created a public Facebook page in which I document my journey with KTS. As much as I love blogging, I wanted to try something new after writing on this kind of platform for several years. Please feel free to like my Facebook page and continue to keep up with my Klippel journey by clicking HERE!

Lots of love,

Arianna

Some Debulking Pictures

Hey all! Here are some debulking pictures from a few weeks back. I had my ankle debulked by the amazing Dr. Spencer at Boston Children's Hospital. The first 2 pictures were taken by her during the procedure itself.

What 50,00 Views Means to Me

50,000 views may be such a miniscule amount for the vast majority of the world in terms of viewing number or readership, but for me it is somewhat of a milestone. Why? Probably at somewhere around the 25-35 thousand view mark I was taking my life into my own hands by making some poor decisions happening behind the closed door of my bedroom.

Alcohol and pain medicine, anyone? For me, it was probably what was for dinner at least half a dozen times in conjunction to mixing the perilous cocktail with xanex a slew of nights. Other nights it was merely Xanex and alcohol. I was heading down such a self-destructive path. It was absolute chaos that ensued following a lifelong stint of trying to kick this little-known disorder in the butt (no pun intended). I hated myself for the mere fact that I existed. That's my ugly truth, and I have hesitated to say it on a public media forum for some time now. But while the sentence, “I hated myself for the mere fact that I existed” may be simple, the aggravating components beneath the self-loathing statement were anything but.

It made no sense to me really for I fought for so many years to live, and not just to live, but to live a life with vigour and adventure...My mind was so inundated with depression and many of its closest friends (hello, OCD) that getting up and getting dressed on my healthiest of days became such a gargantuan burden. It was an utterly hard time for me and my head was absolutely spinning. In taking those drugs in the manner I did, I was crying for help, I just didn't realize it at that particular point in time. I was struggling with growing up and accepting my reality and what had happened to me, and at the end of the tunnel I could only see ominous colors; why fight to live if the rest of my life may resemble the horrors of the past? At that point in time, I was a passenger on a never-ending merry-go-round ride that consisted of Sepsis, surgeries, and hospital stints all relating to Klippel. Then, in the midst of all that, I was struggling to fight through a different battle: major depressive disorder and anxiety gone rampant. Between fighting all of these negative elements, I became absolutely exhausted. I had the best Klippel Dr.s and a great mental health team but still felt enslaved to these conditions each moment of every single day. As one of my Dr.s who did Graduate work at the famed University of Cincinatti said, “mental illness does not always accompany a physical chronic illness.” For me, the two were blending together and creating a vast image of disillusionment that solely consisted of hopelessness for the future.

However, I came clean about my usage after another month long hospital stint for being Septic this past June. Now, at 50,000 views, I am struggling to recover from my latest debulking surgery. And although I am still grappling with the throws of Klippel, I have evolved into a better person than when I initially started this blog. I have come to accept myself more, and am learning that I do indeed deserve nice things to happen to me. I am learning that I do deserve love and acceptance and people who treat me nicely in my life. It has taken me a long time to get to this point of learning to accept myself, and I am not fully there just yet. However, I cannot wait to see where life takes me within the next 50,000 views!

Thank you for all of the love and support in which you all have shown me. I am having a particularly tough time recovering from this debulking surgery, but I have a support team that cannot be rivaled.

Lots of love,

Arianna

Where Have I Been, Anyway?

Well, I will (attempt to) summarize:

About 26 days or so ago, I was rushed to Children's Hospital Boston with a surmised Cellulitis infection on my foot. I stayed inpatient until my surgery five days later while receiving Vancomycin through the IV. The initial surgery I had was a debulking of my ankle done by the (in my eyes) infalliable Dr. Spencer on the Vascular Anomalies Team at Children's Hospital Boston. She's an absolute rockstar, let me just begin by saying that much (my version of one, anyway). Then, a week later, I underwent Bleomycin injections in my private region with Dr. Alomari. I do not quite think I  need to say much about him in this post, as I think readers already know how superb I think he is as both an intellect and human-being alike (based upon previous posts). It's time for me to gush about Dr. Spencer, now. ( = A week after that operation, I endured a 3rd surgery within 3 weeks, this time under the scalpel of Dr. Spencer and her incredible team. There was a slight issue with 1 of the 2 drains getting stuck, and we needed to go back in and get it the heck out as it posed a very ominous threat to my health.

So, yes, I just underwent 3 surgeries within 3 weeks time along with a cellulitis infection (and some more standard medical complications in a mere matter of 3 weeks). It's been a journey, a ride, and I am absolutely inundated with copious amounts of EXHAUSTION. I arrived home not even two nights ago by ambulance.

But, how is that damn foot of mine we debulked, anyway? Well, it's phenomenal. Truly, it is. And I attribute that mainly to Dr. Spencer and her kick-ass self. You know what I love about her? The way in which she not only works wonders with her scalpel, but the way in which she was so incredibly dedicated to her craft even after the surgery. So we are about to get four feet of snow in a couple of hours and she has to be in work in Weymouth... & She STILL wakes up at 4am to come and look at the wound and just chat in general with me at my bedside. And this, may I add, was not an infrequent experience... she was consistent in showing up, being there, and nourishing my mind with positive thoughts and seeds of knowledge and inspiration. She would phone in if she couldn't be there in person. Her life perspective, her work ethic, her work skills, all an A+, undoubtedly. 

Below is a picture of me with undoubtedly one of the most inspirational woman I have met thus far on my journey's while inhabiting this Earth: Dr. Spencer! She was so incredibly kind when I asked for a picture. This was taken just prior to the debulking (1st surgery together). 

I have so much more in which I will update you all with soon, including loads of pictures from my 23 day inpatient stay at BCH and stories/opinions galore. I apologize if the writing of this particular article was sub-par, truly I am. At this point in time, I am just incredibly fatigued but the foot itself looks and feels ten times better than I ever could have imagined at this point in time. 

Lots of love and may you all be staying warm! - Arianna Helena

It's All in Who YOU Surround Yourself With

Each day right now feels somewhat surreal – on January 26^th, I will be having 2 procedures done. One will be the bleomycin injections in my rectal area with an interventional radiologist who has studied under Dr. Alomari. The other procedure will be an ankle/foot debulking with Dr. Spencer. While I have had several chilling medical situations in the past, I am particularly anxious for the debulking part of the day... however I am in such a momentous amount of pain that a part of me is really just ready to get this whole ordeal over with!

A great deal of people ask me “how I do it.” The truth is, I do not do any of this alone. I have an amazing team of people surrounding me that play a huge role in helping to keep me centered. I see a talk therapist (who is utterly amazing) approximately 3 times a week. I have a nurse practitioner at the same office who prescribes me antidepressants and helps to keep my OCD in check (at least, compared to how my OCD used to be). I have parents, and not just parents, but incredibly great ones who cater to me physically and emotionally. I have an amazing team at Children's Hospital Boston. I have family members who are supportive and loving and infiltrate my veins with strength. Last, but certainly not least, I have friends and a slew of vacular anomaly/Klippel friends who breathe life into me day-in day-out. I really am not doing any of this alone, and for that I am very much so grateful...

Mom and I the other day on a rare outing for me these days - we took my walker.

It has taken me quite some time to let go of toxic people in my life (yes, that has unfortunately included some of my own flesh and blood and people I have been friends with for several years) in order to reach a calmer state. I despise confrontation, so often I would just let people walk all over me despite my feelings continuously getting hurt. My therapist, however, taught me that there is no room for this kind of energy in life – especially for someone dealing with a chronic illness as grave as mine.

So, I know this post is rather short and I have not written much as of lately, but I wanted to say thank you. Thank you for all of the people out there who have been such an amazing support system to me. And, while I do not consider myself to be in a position to give advice, I will share this suggestion: surround yourself with a good team. Surround yourself with people who are competent and kind, and truly have your best interests at heart and want to see you prevail.

That's all for now,

I will type more soon!

Sending you lots of love,

Arianna

Upcoming Debulking Surgery with Dr. Spencer

"Sooo...this is the moment where I could look back on my life and say this is where it all went downhill, the great demise began..." I asked, my gaze meeting hers. "Yes." She said.

DEEP. FUCKING. BREATHE, ARI, DEEP. BREATHE.

"Okay, papers please."

"You are absolutely sure?

"Okay, i'm ready to sign."

I signed because despite all the complications she described, it was that or stay at the state I am at now that will only worsen and will lead to no mobility and being dependent on pain meds. So whatever happens from here, I am choosing my best shot at a FUNCTIONING life. For me that does not entail hopping from bed to couch and hallway to bed... that is no way to live for me. I am going to be an OCD specialist, and the best damn one in my field someday, just you wait and see ( : and if not, I died trying to obtain something I loved and believed in to the core. And, I may even get to look fabulous in a pair of heels (sp?) doing it ; ) I would be lying if I said I was not riddled with anxiety over the procedure, however.

Dr. Spencer will be doing a debulking surgery on my ankle and foot on January 26th.

Below are just a few pictures from my hospitalization late December that I promised to post a few posts back. I was hospitalized for Cellulitis in my buttock/thigh region. Sending you all so much love! - Arianna

The Power of Makeup...

Interesting story behind the picture below... When it was taken, I had a temperature of 103. I was in the hospital for Sepsis for weeks and my sister's wedding took place while I was still inpatient. So, the hospital (my doctors) gave me a day pass to go to the wedding. You would never know it, but I was so incredibly sick in this picture. I had to be back at the hospital by midnight and was loaded up on a slew of pain medicines to get me through the day. I tried my best to act fine as it was the most important day of my sister and brother-in-laws life thus far, and I did not want to spoil it with my illness; I did not want the attention of me on the biggest day of my sister's life... I had to be back at the hospital by midnight, and felt so incredibly sick throughout the entirety of the day. Still, I did my best to conceal how sick I felt as it was important to me that the focus was on my sister and brother-in-law's big day and not my Klippel. In retrospect, despite how sick I was, I am so glad I was able to be there and that the hospital worked with me to make it happen. It was the first wedding I had ever attended, and to witness the look of love on my sister and brother in laws face at the alter made it all worth it. I would do it all over again despite how sick I was... yet looking at this picture you would never know I felt like I was dying on the inside. Just goes to show what wonders a professional makeup artist and a nice dress can conceal! - Arianna

Click HERE to visit my professional FB page where I update constantly in regards to Klippel and Chronic Illness alike. XOXO - Arianna

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."

You can like my Professional Facebook Page HERE.

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"

She's Alright Now

I have a great deal in which I yearn to share, but am not quite sure where to begin. Therefore, I will just follow the waterfall of emotions in my mind and see where this particular post takes me...

It was very much so like any other day of surgery, with mom and dad and a bag of essentials in tow as I entered the hospital. For the second time since it had been instated at the opening of summer, I was placed into the IR waiting room prior to my procedure with my interventional radiologist. I was somewhat accustomed to these “peanut procedures” now with this particular doctor, and was greatly anticipating this one because of the bout of pain I had been experiencing the entirety of summer. October 1^st, in my mind, could not get here fast enough. Pain, as many of you know, is a vile force to be reckoned with, and I was tired of not being able to sit comfortably. The only comfortable position in which I could muster up on any given day was that of lying on my stomach. Not to mention, if I ever wanted to have a sex life of any sort, this surgery would be undoubtedly be instrumental in helping me to do so.

With that said, the morning of the surgery arrived and I kissed mom and dad goodbye with a mere peck on the cheek as the staff wheeled me into the operating room. I was not scared in the slightest, I had done this “process” (so to speak) too many times before. Not to mention, my trust was placed in the attending performing the operation. He had operated on me in much more dire circumstances prior for several years. For me, this surgery was almost symbolic of a new awakening; one in which I was addressing a problem that had been bothering me for quite some time now...not just on a physical level, however, but an emotional one, too.

I awoke in the ICU with my oxygen level in ruins; apparently, I had a horrific allergic reaction to morphine while under and some fancy word (relating to my breathing level) had dropped incredibly low. What was supposed to be perhaps a 1 night stay in the hospital turned into an 11 day one. I was dissatisfied, but I do not remember the vast majority of what I went through (thankfully). Nor do I blame any of the staff nor anesthesiologists, as their skilled handiwork is what got me through that operation.

I am still, however, having a hard time coming to grips with the fact that that operation could have been my last day on Earth due to the unfathomable allergic reaction I endured while under general anesthesia.

I will write more before long, however for now I am off to retire to bed. Since returning home in mid-October, I have been dealing with a great deal of other life matters (some pertaining to my Klippel, others not). This, I find, is a rather confusing time within my life but I am trying to embrace it with both arms (with the assistance of my family and friends).

Check Out MY New Facebook Page

Hey all! If you are wondering where I have been, I have started a Community Page on Facebook about my struggle with Klippel and mental illness. I LOVE blogging immensely and am not giving up on it by any means - rather this is just a new platform for me to have some fun with as I have been blogging for several years now.

So please feel free to check out my page and like it ( : xoxo - Ari

https://www.facebook.com/Ariannasbeautifullife

I will be updating on here within due time... for now, however, I am just having fun experimenting with the Facebook page a bit. Don't worry though, as I still have heaps of stories filled with trials, tribulations, and happiness that I look forward to sharing on here. 

Sending you all so much love! 

Different Is Beautiful

I like to write with lipstick. ( =

Some days I would quite rather I was not different, but the same as everyone else... - While I appreciate my Doctors and Nurses at the Hospital immensely, they are not people I would have ever wanted to have to know. I never wanted to have to know nor need them. Not in my perfect world, anyway. This, however, is not a perfect world and I am not a perfect person by any means. None of us are, so I am told relentlessly by professionals in the mental health field. They're right - even those highly-esteemed by society for things such as their looks, wealth, occupation, etc. are not perfect... We, as a human-race, are so incredibly far from perfect. We are all designed by something bigger than us, to be who we are. We are not all meant to blend - to the contrary I am afraid. I do not know if I will ever make peace with having this condition prior to leaving Earth someday (when a higher power calls me Home). Despite my contempt for what it has done to me and my family, however, I will learn to embrace what separates me from the vast majority of others out there by not hiding - I will not be ashamed of being different. I didn't choose this condition, it chose me. I will live in spite of it and live my life to the fullest, in hopes that one day I can reach my highest potential in terms of academics, humanity, etc. 

Different IS Beautiful, even though at times it feels like a damn curse.

Musings Prior to Bed: Mental Health, Relentless Pain, Guilt, and Gratitude

I spend a great deal of time in therapy these days trying to sort out the seemingly relentless and never-ending mess present within my mind. More often than not, it does feel as though there is a constant war taking place within my overly-neurotic brain. It's not easy, for I struggle with major depressive disorder, borderline personality disorder (albeit a mild case), and OCD on top of my KTS. Many a days, I find myself wanting to feel at peace, even if it's merely to a minimalistic caliber. I have a great deal of trouble achieving internal calm despite my hardest exertions. Having chronic pain while simultaneously struggling with mental illness can be abominably fatiguing. Yet, I am aware that there are people who have overcome much harsher circumstances, and I always want to be cognizant of that fact. I think it is absolutely vital to be conscious of other worldly happenings. While it does not change my particular circumstances, it does indeed help to add perspective to a rather complex situation.

So, while I may be in a great deal of pain on a daily basis (I have an impending debulking surgery that needs to be done with Dr. Spencer), I do try to be aware that life could be a lot harsher in terms of my life with Klippel. In fact, I was speaking with a dear life-long (non-chronically ill) friend about this on the phone just earlier tonight. What if I had been born in a poverty-stricken 3^rd world county in which there was no place suitable to treat Klippel? I would not have made it past my 1^st birthday, as I was septic at the tender age of 6 months old. What if I did not have parents who were not willing to take care of me when I am unwilling to take care of myself? What if I had to handle my financial burden entirely on my own? Surely, in spite of everything, there is a great deal in which to be thankful for.

However, this gratitude is also followed by a momentous magnitude of guilt, as I cannot help but wonder why I was the lucky one; why was I the one that was born in Boston as opposed to China where Klippel babies are sometimes left on the streets to die (based on superstition of their birthmarks, so I have been told by some reputable sources). Not to mention, the guilt that comes associated with being the chronically ill one in the family that has inconvenienced everyone else. None of this is easy for me to comprehend at this point in my life, and I do not believe that I am supposed to have all the answers as of yet. I believe that in terms of learning to accept my condition in terms of what I have, what it has done to me, and what it has done to others around me, there are layers that will constantly be unraveled as my life progresses.

While I would never say to someone going through a harsh medical situation (whether that be mentally or physically) that it could be worse, the verity is that in my case, I am fully aware it actually could be. There is, however, a fine line between glamourizing my situation because of the fortunate circumstances surrounding me and that of denial... I am still trying to maneuver my way through all of this mess, but I am hoping the chemo med called Sirolimus that I am back on will work some wonders in terms of my physical health. I undoubtedly believe that my physical health has played an active role in further aggravating my mental health (as many Journalistic studies have proven in patients with chronic-illness). Mental health issues run in my family on both sides, and that in itself is something to be aware of as these genetics are often passed down. So, while I fully believe that I would still be dealing with a slew of psych. Disorders (even without the constant distress Klippel has inundated my life with for the vast majority of my time here on Earth), I do not believe they would be nearly as out of control as they are now.

Just some random musings prior to bed as my mind is restless at current.

May you all be well,

Arianna Helena

Hope Breeds...

The Wrath of Life

• I struggle with Major Depressive Disorder along with Anxiety and Borderline Personality Disorder. Both have been a despicable force to be reckoned with over the years, but they have been particularly brutal these past couple of months...especially now. I do see a team of Psychological Professionals, ones who are capable of treating a Chronic Illness Patient of my magnitude. What lies beneath this writing stems from one of the countless nights in which I have found myself at odds with my own mind. If you are experiencing feelings of Depression and/or Anxiety or Distress, reach out to someone you feel comfortable expressing yourself to. Keeping these thoughts isolated in your own mind will only cause more harm. If you are someone who struggles with mental illness and a chronic illness, than you know that life can be seemingly impossible at times. Yet, we must encourage each other to continue on with our Plight to live... I wrote the text below as a way of helping others (who do not face the hurdles of mental illness or Chronic Illness) to understand what goes on within my own mind at times... I hope it can give people a better idea of how draining and utterly manipulative mental and chronic illness can be.

Here goes my story, tritely entitled “The Wrath of Life”. As you will see, there are obvious fictional components to this story. The feelings depicted in it, however, are anything but false.

_______________________________________________________________

My own ineptitude in terms of writing is annoying me on a grand scale right now.

How is it possible for one body to be inundated with such a vast supply of emotion and yet unable to emit it in a manner considered psychologically healthy?

I will give this a try...

Despair is my state of mind. My past haunts my already taunted, fragile soul. Life is stepping on me, watching as I lay helplessly on the hard floor, bleeding profusely. If there is one thing I am good at, however, it is putting on a good show and fooling even those closest to me. I have to, after all, as I have to keep up with the races of everyday life. Perhaps more details go into this “effort” than one would assume...I have to exert all of my energy into it. It requires being insanely alert at all the right times and around the right people. There are, after all, no rooms unoccupied for those who dare commit a mishap. Manipulating those around me has become common practice. It's not that I'm on an ego-trip, however, for manipulation invokes a deep sense of shame within me. However, when I have allowed myself to fall into a million little miniscule fragments to my closest confidantes, Life only shrinks for a short while. So, I continue to manipulate those around me in that I make them believe I can swim and more importantly that I want to keep swimming despite Life. More on “Life” and his heinous ways to follow within this post.

The majority of these days, I find, it is easier for me to stand out from the crowd than it is to camouflage, subconsciously speaking...and when trying to put on a facade of being okay, one must always blend. Blend, my darling, as you would your favorite blush onto the hollow of your cheek... You are in control of the brush, so if any pigment does not blend seamlessly, you are the only one to blame. Shame on you if you so much as commit the slightest error, for Life is always watching. In Life's eyes, there is nothing even remotely adequate about my efforts, ever. Yet, I keep trying, waiting from him to lessen his wretched grip on me (more on that Odious man and his slimy tactics later).

Some time has now elapsed.

“Life, I do not believe myself to be worthy of having yet another shot at you. You've given me numerous second-chances, ones that other children of chronic-illness did not get... Yet I still do not feel any damn closer to the light. And, because I am now so resentful of the light (out of my innate spite for not having found it yet), I may repel myself from it if it ever dare ventures toward me again.”

“Silly child”, Life responds, “pick yourself up from off the floor.”

“I cannot, as you are crushing me with your superiority. My veins, they bleed ineptitude... You're crushing me...do not you see that? Maybe if you would give me an incentive, a tangible one. I'm tired of singing Over the Rainbow. Where is the freakin' Rainbow? Ask Judy Garland if she ever found it...ask her how that worked out for her and her precious little pup. I start humming Over the Rainbow, as there is merely nothing else to do... It is not atypical of Life to do this to me, and I have learned that if I insist on surviving, I must deal with his invasive, spirit crushing episodes. Wanting to end this horrid affair of attempting to live without Life's weight crushing me (as I am told by a slew of professionals) means I am ill, mentally speaking. Maybe if Life did this to them continuously, they would understand.

In truth, Life always bears some of his weight on me, and it makes it harder to breathe. Sometimes I feel as though I am gasping for air while Life digs his jagged feat into the curve of my spine. And then, Oxygen finds him and joins in on the effort. Now I am combating two vile, wicked forces as opposed to the already malignant one I was prior. “Please,” I plead to them, tears spilling down my glum, fatigued face. “You are killing me in every way in which one can be killed! Physically the pain is unbearable and my spirit has already been terminated... What more do you Monsters possibly want from me?" “St...sto.....STOP,” I scream with all the fight I seem to have left within me. "MY SPINE...THE PRESSURE...PL..PLEEAASEEE...STOOOOOP."

My vision is blurred from the hefty supply of my own teardrops. I go to wipe some away with my right hand in an attempt to comfort myself. Only now, Oxygen has seized my right hand, and I can do no more with the physical state of my body.

Life now bears its force upon me even heavier, as a cruel reminder that I will not win this battle based on outlook or my mentality alone. His bare-feet continue to cut through the skin of my back like those of gargantuan needles. I feel hollow as a corpse, and yet I know I am still alive, for I can still hear the tedious, monotonous sound of air exiting my right nostril. I do not plead with Life nor Oxygen, for those Two are relentless. I lay there, just lay there, feeling dead for what feels like an eternity. At some point, I know my body will succumb to a state of slumber, if only that of a short one. I lay there, helplessly, as Life and Oxygen dig into me.

***

At some point, I awake on the floor in a room inundating with daylight. Life is lying right next to me, staring me right in the eyes. He has adjusted his position, his right-hand fingernails now dig, harshly, into my lower right arm. My gaze immediately shifts to remnants of my blood that He and Oxygen left last night. How mighty generous of them.... I am so accustomed to the pain that I am no longer horrified by it but rather nonchalant about it. I close my eyes, telling myself that this is indeed my reality, not a nightmare nor a one time love affair with an unhealthy habit. The new blood interlocks with that of last night's, and I watch them merge into one dried-up pile of despair... In a few minute's time the new blood will have submerged itself with the dry blood and the two will be practically identical. The memory of the blood haunts me...where is that permanent remedy for memory at, anyway?

“It was awfully nice of you to stop crushing my spine last night,Life, but can you please go elsewhere right now?” Just then, the memory of Oxygen enters my mind, but I do not dear instigate Life by bringing him up... After all, I already just asked him for a pretty grand favor. This is Life, after all, and He will not be spited nor belittled under my influence.

There's that sonically induced interference again...one of my nostril's continues to emit air. Life, His demonic eyes staring intently into mine, replies after a few moments of unsettling silence. “Silly Child,” he laughs wickedly, “it's time to get up.” Now, his nails are digging into my skin even harder. “Okay,” I retort. “Okay,” I say again, as though I am trying to convince myself that it all actually will be just that, okay. I get up, all the while Life keeps his grip into my arm hard and steady, and his body mimics mine. For in order to stay connected to me, he must stay on top of my every move. I am a prisoner of Life, only the vast majority of people do not see that. I can conceal Life's very wrath and presence by orchestrating every meticulous detail of everday...from every smile, to what I wear, and don't forget that coquettish laugh of mine...

Life has literally implanted himself into my veins, and there is no way to untangle him from me. Where I go, he leads, for I'm his Jazz Singer and he is my Cult Leader.  

In My Veins

I discovered this song a few months back, and ever since I have been utterly infatuated with it. The lyrics resonate with me due to my experiences with Klippel-Trenaunay Syndrome and the way in which it has impacted my life so immensely. Perhaps you will like it, too. Below are the lyrics that go along with Andrew Belle's song "In My Veins."

"In My Veins"

Nothing goes as planned
Everything will break
People say goodbye
In their own special way
All that you rely on
And all that you can fake
Will leave you in the morning
But find you in the day

Oh, you're in my veins
And I cannot get you out
Oh, you're all I taste
At night inside of my mouth
Oh, you run away
'Cause I am not what you found
Oh, you're in my veins
And I cannot get you out

Everything will change
Nothing stays the same
Nobody here's perfect
Oh, but everyone's to blame
Oh, all that you rely on
And all that you can save
Will leave you in the morning
And find you in the day

Oh, you're in my veins
And I cannot get you out
Oh, you're all I taste
At night inside of my mouth
Oh, you run away
'Cause I am not what you found
Oh, you're in my veins
And I cannot get you out

(No, I cannot get you out)
(No, I cannot get you)
(Oh no, I cannot get you out)
(No, I cannot get you)

Everything is dark
It's more than you can take
But you catch a glimpse of sun light
Shining, shining down on your face
Your face
Oh your face

Oh, you're in my veins
And I cannot get you out
Oh, you're all I taste
At night inside of my mouth
Oh, you run away
'Cause I am not what you found
Oh, you're in my veins
And I cannot get you out
(No)

No, I cannot get you out
(Oh, you're in my veins)
No, I cannot get you out
Oh no, I cannot get you

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 inpatient stay at Boston children's hospital as opposed to that of of maybe day surgery or 1 or 2 days...

Writing is something I have been incredibly passionate about 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 soothing and 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 strangers, though, 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 was somewhat edible in content. 

I greatly anticipate writing more incredibly soon,
Ari