Wednesday, October 30, 2013

"Prelude to 'Calling You Out'"

“Prelude to ‘Calling You Out’” On the interweb, the post below this one has received a great deal of attention. Not nearly enough to consider it viral, but I recieved a great deal of feedback from Klippel patients and their families. A vast majority of those who provided written feedback admitted that the post resonated with them deeply, some too deeply, for that matter. Some of these came from patients, others from family members of patients, or simply people who realize the lack of adequate mental care in these situations. 
“Calling You Out” was indeed directed at Children’s Hospital Boston, but I knew that CHB wasn’t the only ones lacking in this area. If Children’s was lacking it, then surely other institutions were, too. This knowledge was then compounded by comments I received from various users citing the same thing at their own hospitals, including patients of the famed Mayo Clinic. The post in which I am writing now is perhaps one I should have written prior to “CYO,” but for some reason I just jumped right into my headline. Well, here is a solid example of why I feel as though the Vascular Anomalies Clinic at Children’s NEEDS an informed team of psych. experts on board, people who are educated on KTS and understand the mental ramifications it can bring about. 

“Klip….Klippel-Trenaunay Syndrome? Am I saying it right?” 
“Yes.” 
“Can you spell that for me?” 
This is generally how most of my introductory sessions with psychologists/psychiatrists have gone throughout the past four years. They would then, quite often, proceed like this...
Wow, how bizarre, I have never heard of such a condition even with all of my years spent working in the hospital environment. Can you explain to me what it is and how it impacts you?”
At the age of 22, I can quite gracefully recite the gist of this often vile condition and how it impacts me physically, but it’s still not easy. And, after I am done, I often receive an answer along the lines of “wow…that’s complex” along with a look of utter confusion. 
Most of my sessions would then include the Dr. saying something along the lines of...
I am not sure as though I can help you… I have never treated someone with such an isolating, rare condition before. I wish I had a group of people like you, as I would get you all together and speak. I think that would be very helpful.”
I then explain that I am in contact with various sufferers and their families, and they acknowledge how great that is. Still, many are unaware of how to treat a patient with such an intense, spontaneous condition that presents itself in so little of the population and are UNCOMFORTABLE doing so. That is why I feel the need to lobby for change in regards to this topic. Whose with me? - A

Wednesday, October 23, 2013

Calling You Out, Children's Hospital Boston

Anyone who reads this blog knows I often write quite highly of Children's Hospital Boston, as I have been a patient there since before I could walk, or even mumble for that matter. In fact, I have been a patient there since birth. Yet, there are some harsh truths in which I feel compelled to touch upon starting now, whether or not they are or aren't appreciated by some staff inparticular.
One of those truths is the inadequate/non-existent psychological/psychiatric care in the Vascular Anomalies Clinic. Swarms of Klippel patients flee to the Boston clinic for the expertise of the prominent doctors; I cannot deny that they do indeed deliver in terms of medical treatment and overall care, at least they have for me throughout the entirety of my life. However, in my due opinion, they are lacking greatly in terms of the psychological component. It is a well-known fact that anyone with a chronic illness is anxiety/depression prone. Not to mention, an array of other psychological disorders. It is really quite dependent upon circumstances and genes. However, knowing that Klippel is such a rare and harsh illness, there should undoubtedly be a psychological staff member on board at all times.  Heaps of us Klippel patients deal with never-ending chronic pain on a daily basis, and there are ample studies to support the thesis of how harming this is to the brain. However, if treated correctly by the right people in psychological field, this damage can actually be reversible. I advise you to do some of your own research, if need be, and see for yourself the countless studies that exist on this matter that have been conducted in recent times, If you have been to the CHB clinic, chances are you have met with an array of Klippel doctors who come together to help devise a plan for you to live your life in the healthiest manner possible.

However, I ask you this... What good is it to be in adequate physical health if you feel so emotionally crippled you cannot get out of bed? I have spoken with numerous Klippel patients over the years, and nearly all have fallen victim to mental illness of some sort. A great deal of us Klippel patients deal with depression, anxiety, and even body-dysmorphic disorder. Some engage in cutting as a release, and others are addicted to narcotics as their primary method to numb away the emotional pain. Some, like myself, are just going through the motions trying to make it by day by day.

The Vascular Anomalies Clinic needs to have a psychologist on board, someone who understands the ins-and-outs of this sometimes debilitating condition and the way in which it impacts its patients emotionally. My primary care doctor, Dr. Cloherety, told Dr. Fishman this to his face over the summer. I do not often mention Dr. Cloherety on here, but he has been with me since the day of my birth. He has always led my parents and I in the right direction, and has consistently been the voice of reason in the midst of all the chaos. In fact, he has always been my biggest advocate and for that I am eternally grateful. Needless to say, I have the highest amount of respect for him and trust him with my life.

So, while patients are already being seen by numerous doctors in clinic, why not have a psychologist meet with the child/teenager/adult whether separately, with their parents/family/spouses or both? There is a huge piece of the wellness component missing here, and until it is addressed, countless will suffer and struggle to find the right psychological care. Dr. Fishman, the coordinator of the Vascular Anomalies Clinic, is not only an incredibly skilled vascular surgeon and brilliant at his craft, but a kind, endearing human-being with a lovely bedside manner. I hope that he takes the words of my beloved Dr Cloherety and others into consideration when it comes to this pressing topic. Children's Hospital has always been a leader in the healthcare community, and to maintain this reputation there are indeed a few flaws that need to be tended to. I believe in you, Children's, and I hope that for the sake of all patients you take this message into serious consideration.  - A

Monday, October 21, 2013


“Maybe the truth is, there's a little bit of loser in all of us. Being happy isn't having everything in your life be perfect. Maybe it's about stringing together all the little things.” 


Friday, October 18, 2013

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

Thursday, October 17, 2013

To Sit Comfortably, Once Again

Hey everyone! Since I last posted, I have been discharged from the hospital, come home, been re-admitted, operated on and discharged once again. And this is all within a week's time period!

It's true, the life of a KTS patient can be absolutely insane and anything but ordinary. But, as I continue to shovel my way through this difficult passage in life, I am coming to terms with the fact that almost everyone has been dealt an unlucky hand of cards in some way or other. This is just mine, and it is prepping me for the future in which I hope to help others and possibly inspire them. I guess it is not so much the problems in which we are handed, but the way in which we deal with them.

For now, I will give you guys a somewhat brief update on what has been happening with me medically.

I got discharged from the hospital this past Friday in a great deal of discomfort. The MRI showed some cyst areas that correlated with the places in which I was having pain. So, since every medication I was taking was done orally and my vitals were under control, the teams decided it was viable for me to go home for the weekend. Then, I would come back on Tuesday and have the areas operated on by my beloved Dr. Alomari. When I had the MRI and I was in a large amount of pain inpatient, he was out of town for a couple of days to attend a medical conference. I was freaking out, absolutely petrified that I was at a dead end and that if this issue couldn't be fixed , I may never again sit comfortably on my butt and/or thigh again. I already have a great deal of problems standing for more than a few minutes of time, and sitting was often the only relief I got from that pain. Now, it seemed possible that sitting may no longer be an option. Inside, I felt so incredibly lost and it seemed as though all my hope had vanished.

On Tuesday, prior to the operation, Dr. Alomari came into the room and we talked things over. Aside from the pain, I also had some deeply embedded vesicles that had been leaking lymph fluid and blood for several weeks. I had not mentioned them much before as I was just hoping they would merely close off and become a distant memory. Unfortunately, they persisted with great vengeance, constantly leaking through all of my pants throughout the day and evening with little to no breaks in between. So, at the last minute, we decided to do C02 laser to eradicate the stubborn vessicles which could act as a portal for infection.

I woke up from the operation in great shape - I was walking, talking, and even laughing! Of course, some of that powerful pain medication eventually wore off later that night and I felt some pain. Nothing too overwhelming, though. In fact, the only area that is sore is the thigh area in which I had the C02 laser done. The rest of the areas have improved dramatically! I am sitting solidly on both butt-cheeks while writing this, barely on any pain medication whatsoever. I have not been able to sit like this in months. I feel so blessed to have the amazingly talented Dr. Alomari and his fabulous staff (shout-out to Cindy, Dr. Alomari's "right hand" as I call her, for always having been there for me through all of my various moods) working on my behalf, as I have now regained some sense of normalcy!

I will leave you guys with some pictures below from the past few days. Love to you all and thanks so much for all the kind wishes that have been coming my way; I could not have asked for better friends.
Right before the surgery Tuesday morning. Inside, I was freaking out but I tried my hardest to maintain my composure.

A picture of the C02 laser from a day ago. This is part of the area on my thigh that had the deep vesicles bleeding out. 

This is from yesterday, on my way home from the hospital, sitting comfortably in the car!

Finally, it seems as though I may be home to stay for a little bit (barring any complications). Here, I was snuggled up under a large blanket on my living-room couch. I fell asleep for a few hours right after I took this. Sleeping in the hospital is often hard for me to achieve, so I was utterly exhausted!


- A

Thursday, October 10, 2013

Round and Around and Around We Go...

Seems these are rather tumultuous times for me and a multitude of my Klippel sweethearts. Many of them are inpatient at present; as of today, I am too. Once again, I am fatigued emotionally and physically. As for what I am being treated for, I cannot say with total certainty at this point in time. We have yet to rule out infection/deep clot/both. The good thing is I was able to catch it before I got systemic...which very well may be attributed to the 26 day intensive antibiotic regimen I have been on.
In other words, that may be masking things from getting out of control.

In my last post, “last evening”, I chronicled my initial flare-up that led to this hospitalization. While the overt systemic systems died down at rapid speed, I experienced yet another problem this morning. I awoke around 1 in the morning to a throbbing in my thigh that felt cellulitic (based on previous infections). Several hours later and the pain persisted. Between the butt and the thigh both being in abnormal pain, I felt it adamant to be seen and now I am here yet again. There is no striking redness, although there is a feint tint of some.

While I am not one to ever speak poorly of the beloved hospital that has saved my life dearly so many times, I must say I was not impressed with a couple of the vascular anomalies staff members today. I will not mention names, nor go into all of the specifics, but I was talked down to quite a bit (as was my mother) and even toyed with mentally to a degree. I am not referring to the specialists themselves by any means, but rather a couple of the people who work beneath them. Both who mistreated me (especially knowing the complexity of my situation these past 6 or 7 months) lacked empathy and compassion entirely. I just have to remember that I am indeed here for the specialists who are so expert at their crafts.

For now, pain medicine awaits along with bedtime. It was another 8 hour seemingly endless day in the ER prior to being placed into a room.

As always, love to you all - A


Monday, October 7, 2013

Last evening

I had a "flare-up" last night and it was absolutely horrific. At the beginning of it, I was so sure I was going to be hospitalized that I packed my bags of things I would require/desire throughout the duration of a hospital stay. I figured that I may as well do it while I felt like I could still stand and keep composure, because with infections things often go downhill at a rapid/daunting pace.

My temperature started to rise, I had that unmistakable cramping in my legs, redness appeared, and my buttock area was more painful than usual. I mustered up all of my energy and made my way to the downstairs phone to call my dad at work. Using a phone upstairs was out of the question, because I did not want my mom to hear me and get alarmed for potentially no reason. I called my dad, and all of a sudden tears were running rampant down my fatigued face. "I don't want to do this anymore...I don't think I can do this anymore,...I've tried so hard to be healthy...I just can't..." I cried into the phone. My dad tells me he is calling my mom on her cell phone; never one to play around in a potentially serious situation, he did just that. By the time they were finished talking, I was nestled under my blankets in bed, shaking dramatically. I felt so defeated; I only had two more days of my antibiotics, which I had been on for several weeks now. What was it going to take?

My mom came into my room shortly thereafter and we decided to see where things were at in about an hour (without taking Advil and whatnot). I wasn't in a vicious amount of pain yet, or else it would have been a different story and I would have been on my way to the ER immediately. The pain did not progress, and my fever went down. The cramping in my legs slowly but surely dissipated and the fiery red reverted back to a vascular purple.

Don't get me wrong, I still felt "sick". Or rather, I still feel sick. However, those overt symptoms have somewhat disappeared and now I just wait. I wait to turn either one of two ways; perhaps things will get better from here, or maybe they won't. That is part of why this condition is so incredibly psychological, it plays with your brain in unimaginable ways. By the way, flare-ups are not uncommon in the Klippel World. In fact, they are rather common and some patients experience them on a somewhat frequent basis. Last night was a surprise because it has been a while since I have experienced a "flare-up." Generally (at least in recent years), my body just goes all the way and doesn't stop until I am inpatient hooked up to a cocktail of antibiotics.

For now, I can breathe (albeit heavily), but for how much longer?

- A




Thursday, October 3, 2013

ATTENTION, THOSE WITH VASCULAR ANOMALIES!

A couple of years ago at the KT Conference in Minnesota, I had the pleasure of meeting a lovely young woman named Taylor. Taylor was at the conference supporting her boyfriend, Michael, with KTS.

Here is what she recently posted on a KTS group:
Hello everyone! For those of you who don't know me, my name is Taylor and I'm Michael Papa's girlfriend. I'm a senior psychology major this year at Cazenovia College in central New York. Two years ago, at the KT support group meeting, I met some of the most amazing, inspiring, and kind people I have ever met. So amazing that each one of you has inspired me to do my senior capstone research in relation to the psychological factors associated with each condition. It would mean the world to me if everyone participated in this survey so I can complete my research and continue to spread the word about vascular anomalies and to gain knowledge in further psychological treatment options. This survey is completely anonymous and should only be completed by those possessing a vascular anomaly. Thank you so much for your participation, each day I am inspired by every single one of you and would appreciate this more than anything. To further my knowledge on this subject will only gravitate me more towards the helping profession. Thank you so much!

Further psychological treatment is so imperative for those of us dealing with KTS and other vascular anomalies, so please help make a better future for those born with this condition and take the survey! I did, and it was easy and not very time consuming. Plus, it helped me realize a lot of my feelings in regards to my KTS and how it has impacted my life course thus far.

Click here to take the survey!

- A

Wednesday, October 2, 2013

I Am Feeling Useless

This is by no means going to be an easy post for me to write, as it will evolve around my emotional state at current.

If I had to sum up my existence in one word right now, it would be this: useless.

Many reading may be appalled by my word choice, but I simply cannot help the way in which I have been feeling these past few months.

I have two sisters, and both of them continue to achieve great progress in both their professional and personal lives. While I am elated for their successes, I cannot help but to be reminded of my own failures. It seems as though I am at a standstill that is not of my own-doing. I never planned to be 22, broke, on hiatus from school, uninvolved in any activities, and so distant from people my own age. When I was younger, I thought that by this age I would have a boyfriend, been graduated from college, have a job, many friends with whom I hung out with frequently, etc. I also foresaw myself having a great deal more independence, which I have very little of nowadays.

The reality is, I have been admitted to the hospital in the past few months more than many will ever be admitted within their lifetimes. I have undergone several procedures within the past few months (again, probably than most will undergo throughout their lifetime) and am still recovering from those along with the infections. From day to day, I don't know what my medical life with KTS holds, and I continue to battle with anxiety and depression. To help cope with my mental issues, I consistently see a counselor and doctor.

There is such a strong part of me that is ready to venture out into the world at full-force yet again, as I have been able to do on and off during my younger years (dependent upon my health). The reality is, though, is that I was just discharged from the hospital last Friday and have a lot of healing left to do from my last surgery and infection. In fact, as of right now, I am still having a very hard time sitting on my left butt-cheek (a part of my body that was most recently infected along with having been operated on).

Meanwhile, however, I watch with envious eyes as my friends and family constantly go to school, work, and enjoy hanging out with their friends on the weekend. It's rather upsetting, as I want to live the life in which I see my sisters living. I feel as though I am just withering away, as if I'm just watching the clock that's ticking away my time while anger cultivates within me. I'm ready to move on, but my body is holding me back from doing so.

I have isolated many, as I feel many of my friends cannot relate to what I am going through. While some have indeed been there for me consistently (shoutout to my llama lover Jenn), they are ultimately caught up in their own routines, and I cannot blame them for that.Nor can I expect them to understand the extent of what I am going through. Essentially, they are living life the way in which 22 year old people should. I just do not feel I can connect to a multitude of people on an emotional level right now.

Do any of you feel similar? With such an isolating condition (along with debilitating, depending upon how extreme one's KTS may be), I cannot imagine I am the only one who has been here. I'd like to know what you guys have done/are doing to cope in similar times. Please share your responses in the comment section.

Much love,

Arianna

Tuesday, October 1, 2013

Update

Hi all! Boy do I have a lot to catch up on in lieu of this blog - I will do my best to explain the past three weeks or so in great detail without going overboard. I will be updating this more regularly-that much I can say with great fervor! I have been on somewhat of a hiatus as I felt too lousy (in a systemic manner) to update while I was inpatient.

First off, after about 16 days inpatient, I am home: I checked myself out a few days earlier due to homesickness; it was, perhaps, a rather radical move on my part as the surgical team and I had initially planned for a Monday discharge. Dr. Alomari, however, felt that I was fine to go on Friday. At first, I questioned him a great deal on this - was my body even ready for that transition? What was the chance of me rebounding within the next four days or so? While he admitted slight risk, he told me overall that he would feel better with me leaving sooner rather than later as to not contract yet another infection merely from being in the hospital itself. Initially, I told him that I had to respectfully disagree on this as I was still in too much physical pain. However, as the day scurried on, I began to feel such an intense degree of homesickness that I could not seem to eradicate his words from my mind. If he, one of my top surgeons who knew me best, felt it was safe I could go, and emotionally I felt myself at a breaking point, then something needed to be done. I had my nurse page surgery (the team with the ability to discharge me) and I then pleaded my case to them. At approximately 8:pm on that Friday night, I was riding along in the passenger seat while my dad drove and my mom sat in the backseat. Our destination was home, and I was utterly elated, albeit very nervous in regards to my KTS as I was still in a hefty amount of pain.

I ended up having two surgeries during this inpatient stay (16 days). In the blog below this one, I mention having a surgery on several cysts that expanded from my buttocks all the way down to my mid KT leg. These cysts were incredibly inflamed prior to the surgeries.

Another problem arose while there: my groin area (on the KTS side, of course) expanded greatly. We aspirated it during the second surgery and found it was filled with fluid.

Basically, the past three weeks have been rather intense ones in regards to my KTS. I am feeling lighthearted as of late, but I expect that my internal and external strength will continue to grow and prosper with each passing day.


LOTS MORE TO COME! I am home in bed about to fall asleep, but I did want to do a quick update. Also, a few special shout-outs! Thank you to my loves Cheyenne, Rebecca and Jenn for the visits - along with those of my family! Cheyenne had just been released from the hospital the day before due to pain management issues with her KTS - and was still gracious enough to visit me! Rebecca, one of my friends from my hometown, also juggles vascular anomalies issues and sees many of my doctors. Even though she was told years back she may never be able to walk again - she is currently living life as an active college student who not only walks - but ice skates as well! She is someone in which I find to be incredibly inspiring in many respects. Jenn is one of my best friends who has been there for me throughout all of this KT hoopla - since we were little kids, in fact! I am very fortunate to have her and think of her as a sister.

Anyways, I will end this here now but I will talk to you all soon! xox - A