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

Update on Mental Health Petition for BCH

Hi lovelies! I have so much in which I want to share with you guys... unfortunately I will not be able to do it within this one post. However, this post is certainly a start, anyway!

Perhaps you remember the petition I initiated a few months back, the one where I wrote about the need for the VAC Clinic at Children's Hospital Boston to have an informed psychologist as part of their staff. As a well seasoned doctor once told me, 

“what good is it to have a patient who is physically healthy if they are so emotionally wrecked inside that they are unable to get out of bed in the morning?” 

Chronic illness and depression practically go hand in hand, but with proper treatment from trained professionals (as research demonstrates) one can indeed live a life engulfed in prosperity and jubilation.

The reality is, though, that the mental health portion of this condition is largely ignored. In result, a great deal of patients struggle with hefty amounts of depression, anxiety, and other disorders that can be utterly crippling. No one should have to live life that way, yet so many people with Klippel do as they are unable to find the proper help in regards to dealing with this condition (and, unfortunately, there is not much available). That is why I asked Boston Children's Hospital to step in and, well, step up.

I sent my petition to Dr. Fishman recently and was so touched by how responsive he was in regards to this matter. He agreed with my reasoning wholeheartedly, and was willing to help me fight for this cause, as he too believes it in very deeply. For those of you who have not met Dr. Fishman, I will tell you this much: he is a phenomenal human-being. Aside from being incredibly skilled as his work, he is a fabulous humanitarian that genuinely cares about the needs of other people.

I am not quite sure he would want you to tell me this, but he can get pretty emotional when it comes to his patients. At the last meeting, he cried when he saw images and what not of how much Sirolimus has helped various patients of his; I know this to be true because he told me when I ran into him the other day.

Back to the petition, though. Dr. Fishman sent out an email to an array hospital leaders. He also had a 45 minute meeting with the Chief of Psychiatry, David Demaso. Dr. Demaso now wants to have a meeting with me in regards to this matter, and is very receptive in helping to find a tangible solution to this problem.

Had Dr. Fishman not been so active in spreading the word about my petition (along with being incredibly supportive and giving me the courage to believe in myself), I would not have this astounding opportunity to meet with such a high-ranking Dr. within the psych. Department. Dr. Fishman and Dr. Demaso are incredibly willing to implement the change in which is so desperately needed in order to give VAC patients the best all-around care possible.

So, basically, change is immenent people! ( : This is fantastic news for patients/family members of patients of Vascular Anomalies patients at Children's Hospital Boston. I will keep you guys updated as to how my meeting with the highly-esteemed Dr. Demaso goes! I do not yet have an appointment set up with him but plan to make one tomorrow.

To read my previous thoughts on this matter, please click here to read my Calling You Out BCH Post I did several months earlier
Also, click here to ready the petition I did

Below is a picture of Me and the lovely Dr. Fishman at the KT Conference approximately three years ago. Unfortunately my eyes are shut in it! : (

More soon, Arianna

Carry On

Hospital flashbacks are nothing new to me; in fact, I have consistently had them since the tender age of 7 (I am now on the verge of turning 23). These horrific glances of the past are a part of my PSTD in which I have had for years now due to medical trauma I've endured since the beginning of my life. Sometimes, it's a mere smell that takes me back to that certain time in the emergency room. Other times, it may simply be a shirt's colored hue that reminds me of the one in which I was wearing when I had become ill yet again. Moving on from the past can be so incredibly hard, especially when what has happened in the past is likely to occur again within the future.

However, I think with chronic conditions like these it is important to shovel on through each day despite an impending sense of doom or you'll never experience the sweeter, more blissful side of life. There is indeed one, that much I continue to believe. With depression and PSTD, it is so much easier to remember the bad as it never seems to be far from one's stream of consciousness. However, you have to fight hard to remember the good. It doesn't really seem quite fair, does it? Why do the bad thoughts and flashbacks come so frequently without any merit, as opposed to the good ones that need to be dug up from the bottom of your brain to even be remembered at all? All I know is that pushing to remember the good times is worth it .

Right now, I sit in a chilly room with half a foot of snow outside my door. Today, we're supposed to get another foot of snow and I likely will not be leaving this room anytime soon. Today was also the date in which I had my appointment in regards to me possibly debulking my ankle with Dr. Fishman, Alomari and Spencer. Now that one doctor has had to understandably so cancel (Spencer, due to the storm), it would be rather pointless to attend as each play a vital role in this potential procedure. Without input from one, I am unable to move forward in making this decision. So, for now, I am back to waiting in regards to what my future holds in regards to the debulking surgery. In the meantime, I have not felt that well in spite of me taking oral antibiotics daily. Yesterday, I came home from my Nana's to find a new angry red spot on my leg, although it has lessened greatly in pigmentation today. However, I still feel so week and down-trodden from my last hospitalization. I know that despite the new calendar year, my anatomy is the same and I will experience frequent hospitalizations at some point in the future. Whenever I remember the numbing pain that accompanies me during infections or following a surgery, I cannot help but shudder due to fear.

 But you know what else I remember? I remember the turquoise colored water and sense of tranquility that fell upon me that day as I lay peacefully upon my raft in that Caribbean water. I remember feeling like one with the ocean, and feeling as though the world was my friend as the sun beamed down upon my 18-year-old sun-kissed skin. It was the ultimate feeling of bliss. Had I not pushed through all of the medical trauma and depression, I would have never gotten to experience that feeling of euphoria. I guess my point is this: push through the hard times in order to get to the good. I am sure that many medical obstacles are to come my way in 2014, but I am determined to fight through them in order to experience the gentler side of life. It's like the old saying: If you want the sunshine, you have to put up with the rain.

 Happy New Year everyone, and may this year provide you with the strength and courage you need in order to battle your own obstacles, whatever they may be. Believe in yourself, and never forget that you are indeed a warrior who is capable of more than you may even know.

 Lots of love, Arianna

Relentless Chronic Pain, Establishing Normalcy

“Walking through the city street, is it by mistake of design, I feel so alone on a Friday night can you make it feel like home if I tell you your mine, It's like I told you Hunny”

I hate the feeling of a flare-up, it drives me incredibly wild to be absolutely honest! Perhaps the essence of the problem is that one cannot always be sure it is merely a flare-up in that moment. One day about a week ago, I awoke with a cellulitic red spot located somewhere between my foot and ankle. It did not look bewildering by any means, but certainly suspicious. The other evening, I had to awaken my mom in the midst of her slumber to dip into my emergency stash of oxycodone as the pain was radiating throughout the new red spot and the entirety of my lower leg. This pain was barbarous; it would not allow me to sleep and was certainly an anomaly as far as my everyday painful sensations are concerned. It could have been inflamed veins, although I will likely never know the real source with such an inconspicuous condition (unless I had chosen to venture to the emergency room). Fortunately for me, no further symptoms accompanied this area such as temperatures or chills and what not. So, the pain medicine eventually kicked in and the next day the area in its entirety felt much better (a heating pad accompanied the medicine and did great justice as well, I believe). However, the spot still remains although I am still very much so stable in vitals and other telling symptoms.

I am continuing on my IC Cephalexin 500 MG capsules twice per day and I truly feel they are doing the heavy lifting in maintaining my health. I will be on them for at least three more weeks or so. While they can be rather upsetting to the stomach, it is far worth the residual side effects to be home and in a state of “normalcy.” Discovering normalcy, however, is still a startling challenge living with a chronic condition that causes me so much relentless chronic pain. The infections are gone (at least for now) and I do not mean to belittle that greatness by any means. However, the lower leg pain is so incredibly persistent and vicious in nature that at days I am very much so overly-sensitive and on edge; to say I am emotionally well-adjusted at present would be somewhat of a lie. However, I am doing my best to maintain honest, healthy friendships and venture out every now and then despite the pain. Sometimes, I find myself lashing out at those around me and being incredibly irritable; this is by no means the way in which I like to conduct myself. I feel guilty quite often about this, and try to communicate my remorse to those in which I may have unintentionally hurt. However, I cannot use my pain as an excuse to treat people poorly or I will be doing so for the rest of my life! By no means do I want my legacy to be that of a moody Mindy or bitter Betty.

Friends urge me to be optimistic about future breakthroughs in the medical world, but I have great trouble doing so. I understand where they are coming from, but they simply cannot understand my point of view unless they are the ones in pain 24/7. It eats at one's nerves, and chronic pain has been scientifically proven to mess with the brain's chemistry. Perhaps, then, it is no wonder I often find myself anxious and depressed despite being under the care of a talk therapist and doctor. However, I am greatly anticipating my appointment on January 3^rd to meet with my doctors to address issues of what we can make better with my Klippel.

Below is a picture of me with my sisters on Thanksgiving. It was a truly lovely day as I got to celebrate with the people who have been there for me through the worst of times; at my ugliest, sickest, and meanest. Yet, I know they are not going anywhere and I know I am indeed very blessed to blanketed in such unconditional love. May you all be well. - A  

Dying on The Inside: Depression

“I mean it, I want to die because I cannot take this anymore,” I texted to my sister as tears paraded down my lethargic face. It was 6AM in the morning, and I was sitting in a dark, abandoned hallway adjacent to the 10 North West Unit at Children's Hospital Boston. A swarm of tears cascaded my tear ducts, and I could not get them to cease; if I'm being brutally honest, I may not have wanted them to, either. Sometimes, after crying for a long while, I actually find that I feel a little bit better. There is a scientific reason behind this that I learned a few years back: When upset, your body gathers a plethora of stress hormones that cause you to feel lousy inside. Upon crying, the stress hormones are hidden within the tears. Therefore, they are being released from the body. No such luck this time, though.

I had been crying for nearly two hours now in the same obscure, forsaken hallway. I had called my dad earlier, but he could only talk for a few minutes because he was stuck in a work meeting. I choked through my words as I spoke to him, they weren't so much words as they were syllables. He could barely understand what I was saying because I was so inconsolable that I could barely manage to pronounce a single word without sobs overshadowing my words. My mom, meanwhile, was dozed off in my patient room located on 10 South. I continued to text with my sister as she prepared for school that morning. I was, at this point, seemingly devoid of all hope. Sobbing in the empty hallway seemed to be the only secure place to cry, as I did not want anyone to overhear me and catch onto my despair. The last thing I desired were nurses or doctors all over me because of my elevated depression and anxiety. I didn't feel as if there was anything they could say or do to make me feel better while there. That, however, is the very essence of how depression works. It wants to keep you isolated, to make you feel as if there is no way out. That's not true, no matter how much it may seem like it at that point in time. In fact, in moments like these, it is most important to reach out to somebody you trust wholeheartedly. Whatever you do, do not sit alone with your depression. It is, indeed, okay to admit that you are not okay.

I felt so incredibly lost; as a young child, I never thought much of my live as an adult. Perhaps that is why I was so astonishingly happy at the time despite all the medical chaos I endured as a juvenile.. I lived in the moment, instead of dwelling in the past or being terror-stricken over what may happen in the future. Even recognizing this, I could not seem to change my ways nowadays. I was brimming with despair and self-loathing, and felt as though I were not worthy of good things coming my way. I hated myself. In fact, I still dislike myself a great portion of the time. I either feel ugly on the outside or on the inside, usually simultaneously. It's quite terrifying because when living a lifestyle akin to this one, it is important to be one of your own best friends. 

Depression is so purely manipulative; from living with it for several years and majoring in it at school, I knew that. Still, I could not seem to move past it. I was on antidepressants that helped a great deal with my OCD, but still left much to be desired in terms of my depression. When I was not in the hospital, I was meeting with my doctor and talk counselor at least once a week. I had just started seeing them over the summer season; what made them unique to other people I had seen was that they actually specialize in working with patients who have chronic illness. I would suggest that any and all patients dealing with this combative disease see a talk therapist at the very minimum. Fight for the help you need and deserve. Don't every allow anyone to make you feel inferior for seeking it, either.

Did you know that 1 in 6 adults receive some type of mental health care in any given year? There is no shame in doing so, and yet our society still stigmatizes people who suffer from mental disorders. Indeed, there is a high (or rather positive) correlation between those with chronic illnesses and mental illnesses like depression and anxiety. When you live your life in a constant state of pain, it is easy to fall into negative thinking patterns. Which is why, according to the Cognitive Model of Psychology, it is adamant to adjust internal processes.

Later on that night, I visited my old nurses on 10 North West. I had seen them earlier in the evening, but it was so busy that we barely got a chance to talk and catch up like we usually do. So, I went back to the main desk to see the nurses and desk staff. At this point, they feel like good friends as opposed to workers. They all hold a special place in my heart as they have seen me at my absolute worst and helped nurse me back to health. We've exchanged countless stories about our personal lives, and somewhere along the lines they became more than just staff, but friendly faces as well.

“You always have a smile on your face,” said one of the girls. “You have such a great attitude despite everything.” "Not always," I laughed softly as I stared down at my feet. I felt a smile widen across my face, but inside I knew it was a facade. All in which I was trying to do was keep it together, to not fall on my knees and start uncontrollably sobbing in front of the staff that was there. 

“But thank you,” I replied. “You guys are honestly the sweetest.” I meant what I said, but the smile on my face was in deep contrast to my dying insides.  

I think it's not so much about wanting to die, as much as it is just feeling as though you cannot handle the burden of the physical and emotional pain anymore. You feel as though you are drowning in tumultous waters, and answers are far-fetched, if they even exist at all. Still, you need to fight to stay afloat until that lifesaver reaches you. I promise in the end it will be worth it, although it may seem like all is lost in the moment. Just keep pushing through, and you will be alright. Just keep pushing.* - A

We'll be Alright

At that point, I was feeling as though everything was so utterly hopeless. “I swear to God if you guys don't pull the picc line out I'll just pull it myself...,” I told the emergency room nurse. At that time, there was talk of the picc line possibly being infected. We (as in me, my mom and the team) really didn't know yet, but were grappling with a few different ideas as to what was wrong with me. However, having just come out of the hospital three days ago as an inpatient for my biggest infection thus far, it wasn't too hard to presume I was still healing.

Ultimately, that's all it was. My body was still incredibly dehydrated, and my blood pressure low. Eating was almost nonexistent as the nausea was too intense. The infected area still held a great deal of hurt. I was also still grappling with a clot that extended from the back of my ankle to my toes (and still am, unfortunately).

At that point in time, I would be lying if I said I wasn't suicidal because I absolutely was. “Do you struggle with depression, by any chance,” the ER nurse asked me. My holding room sheets and pillow were soaked from my relentless crying, and it seemed as though the tears massaging my face were limitless. Everything felt so incredibly deranged and hopeless, and the future seemed bleak at best.

It's not the first time I have felt like that; far from it, in fact. However, being sick just exasperates those feelings for me, so I have found. I'd be lying if I told you that each and every day wasn't some kind of an emotional struggle at present, although I do my best to hide it around many. It is, though, but I am still here and ultimately that's what counts. And I am still receiving help, even though that means continuously letting my guard down simultaneously to people, from those in which I know very well to those who are complete strangers. I know I am far from the only one who has gone through such a struggle; the reality is that it sucks, plain and simple. But if I had to give anyone advice, (who is in a similar situation) it would be to open up to the right people around you about how miserable you are feeling. Depression wants to isolate you from people, to have you keep your feelings internalized which only gives the illness more ammunition to hurt you. Speak up and seek help if needed and gain back the upper hand! Sometimes, I look up at the sky and clouds and realize that there is something out there much bigger than I, and that there are things happening to me for reasons in which I do not yet know, for reasons in which I am not yet meant to know. Keep up the fight, and in the end I think you'll see we will all, indeed, be alright. - A

Did you know a good support group actually has a biochemical impact in the brain?
It's true, and the proof stems from concordance rate studies (which generally involve MZ twins).

Example:
take a pair of MZ (identical) twins
remember that MZ twims share 100% of the same genetics

both twins can go through the same traumatic experience, however can have very different support systems throughout those times
for the sake of this example, let's say a pair of twins lose a parent during their freshman year of college.
One twin attends college in the Northeast, while the other attends college on the West Coast.
The twin on the West Coast has developed a strong support-network, and socially speaking is adjusting just fine to their new surroundings. She has formed strong bonds with some of her classmates, and exhibits a host of healthy relationships in her daily interactions.

Let's say the twin located in the Northeast is more reticent in nature; her shy personality has hindered her ability to make friends, unlike her sister on the West Coast. She has a hard time opening up to people due to her shyness, and therefore has not become socially acclimated to her new academic setting. When tragedy strikes and she is forced to bereave the loss of a parent, she does not have the same network of students her own age to help provide her with emotional support, unlike her other sister. 

Years later, the twin who attended school in the NE is diagnosed with schizophrenia, while the other twin remains just fine. This doesn't make sense though, right? After all, if they both posess the same genotype, then shouldn't both twins fall ill with schizophrenia? Seeing as though both have the exact genetic makeup (yet only one got schizophrenia), it is apparent that environment plays a tremendous role that cannot be unaccounted for. It has been discovered that if one MZ twin has schizophrenia, there is a 50& chance the other will obtain it as well. 

So it appears (in regards to this specific example) that the schizophrenia can be traced back to the support system's in which accompanied (or in the case of the NE twin, unaccompanied  either twin throughout these times of hardship. Both twins were born with the same trait in which could have been activated by certain environmental factors. 

My Mistaken Diagnosis (Part 1)

She sat fiddling with her pen as her eyes were glued to me. She seemed to be fixated upon my every word, as though each syllable of mine uttered was a drip of morphine being implanted into her system. “You are a classic mood disorder,” she said. “I don't know why it has taken for now for someone to pick up on this. You are bipolar.” It felt like a heavy diagnosis, and that's because it was. Even if one pushes aside the social stigma that accompanies such mental illnesses, there is still well, the illness itself to grapple with. Life long mood swings and a slew of depleting symptoms. Symptoms, of course, could be mostly managed with proper treatment, but there were still a multitude of uncertainties. It's complex and not at all concrete. For me to go into detail would be my 25 page paper from last college semester all over again.

“We're going to start you on lithium,” she said. And what about the anxiety? “Most people with bipolar disorder have other mental illnesses as well, like OCD. That doesn't surprise me. What surprises me is no one has picked this up until now, the bipolar.” Teary-eyed, I listened to her, trusting her expertise. “You know,” she said, “my granddaughters name is going to be Arianna, too. You fascinate me. You are very interesting. I look forward to working together. You fascinate me."

• A

It's Okay to Seek Help

I am about to be incredibly blunt and speak my mind about a subject that has been brought up recently amongst some of my KT colleagues. The subject in which I am going to touch upon is that of chronic illness and depression/other mental illnesses. Now, there is no denying that the two are somewhat synonymous; there is ample research to support this claim. We are humans and we feel, if we didn't then we wouldn't be human. In fact, if someone came to me and said they have had 20 surgeries and deal with chronic pain on a daily basis but experience no negative emotions whatsoever, I would find that to be concerning... More concerning than if they came to me and said that sometimes they feel down and depressed. Why? After the body experiences a certain level of trauma, it is only natural to experience those kinds of negative feelings. Not to mention that chronic pain does impact the chemistry of the brain and can absolutely play a role in triggering depression/anxiety/etc. The good news, however, is that ample studies show that this damage can be reversed with proper treatment (cognitive behavioral therapy, for example).

Here is where it gets tricky, however. How do you decipher between an appropriate response to a chronic illness and actual mental illness? The lines can be incredibly blurry, and it can be confusing for even us ourselves to know the difference, not to mention our friends and loved ones. That is why I am not going to delve into the topic of possible medication for people experiencing pronounced symptoms of depression and anxiety in this post. I do not have the expertise to do so; I only have my own experiences to go off of and that can potentially be another story for another time.

All I know is this; there is no shame in seeking help, and cognitive behavioral therapy has been shown to be effective in a multitude of cases. Sometimes this is supplemented with medication, other times it is not (it is, of course, dependent upon the patient's specific case). Either way, it cannot hurt and can only benefit the person seeking help. We live our lives as best as possible, but the abnormality we face due to our condition does indeed impact us. Everything within our environment impacts us, and sometimes we need an unbiased source to give us guided, professional advice.

There is no shame in seeking help or talking to somebody. Everything I wrote above stems from my experiences/own views/research but I understand I still have a great deal to learn in regards to chronic illness and deciphering between an appropriate response and mental illness. Feel free to weigh in with your own views in the comment section, I would love to read them! As a future psychologist, reading this stuff is like candy for me ( : ! - A

Fitting In

This is a relatively interesting time in my life in regards to the social aspect. I feel like I lost my teenaged years to this illness, and that I didn't really get to experience life in terms of a “normal teenager.” I have come to find that I greatly resent that, although my teenaged-years did make me a stronger person overall. I wouldn't necessarily want to give that up, but I cannot help but feel as though I missed out in some major way. It's especially hard seeing your younger sister live out the high school years that you yourself thought would have – but didn't. I got pieces of high school social life here and there, but in its entirety nothing that compares to other people.

Even now, it's hard for me to go out with mental health issues and my KTS. Still, I have been trying to make more of an effort, and for the most part when I do go out, I am happy. Before the chronic pain, infections, and clots, I was undeniably a social person. However, as the years went on, I became somewhat of an introvert.

Like I said the paragraph before, when I do go out, I am mostly happy. This isn't always the case though, and usually my happiness is accompanied by a feeling of not really belonging. I sometimes feel too adult for the shenanigans SOME other people my age engage in. Yet, I'm not quite ready to live my life as a 40-year-old woman, so to speak.

It's an extremely weird place to be in, and I think perhaps someday I'll have things figured out. Still, I want your thoughts on this! Can you relate at all? How did you cope? Any comments would be greatly appreciated. - A