Compression Pump

Despite the physical fatigue in which I am feeling, I am unable to sleep due to a flurry of incessant thoughts. These anxiety driven thoughts, vile in nature, are enough to keep me awake for hours on end. There are quite a lot of things that scare me about the future, if I am being rather honest.

Tonight was a particularly bad pain night, or perhaps that is the understatement of the year. My lower leg hurt so incredibly bad that I felt as though I was going to completely lose all sanity in which I had ever possessed – I want to feel as though I am free, and yet the physical constraints of Klippel can leave me feeling as though I will be trapped for eternity. Over the past several years, I have observed that as the warmer weather approaches (I live in New England), the pain in my lower left leg goes awry. The pain is so incredibly wretched that I am unable to think of anything else, except how to possibly quell it. Tonight, unable to tolerate the pain any longer, I pulled out my compression pump for the first time in a long while and let it works it's magic for a couple of hours.

Below is a picture of it – while in use – from earlier this evening.

Whenever I first start it up, it hurts so incredibly bad for a couple of minutes. That, from what I know, is due to the amount of fluid that is stuck in there (which, at the beginning of the process, is at it's peak). However, after a couple of minutes it feels as though the device is gently massaging the fluid up my leg and the pain from the pump has halted.

Do you guys use compression machines of this nature? Do you find them to be as helpful as I do? - Arianna

A New Chapter

A couple of days ago, I entered a relationship with a man who is both kindhearted and intelligent, not to mention an all-around beautiful person. This is my first time being in an official relationship as an adult and not a teenager, although I would not exactly consider my past relationships to have even been relationships; nor would you if you knew the details, that much I can promise! I have had a few intense emotional dalliances with men in the past several months, but we never placed a title...I was never ready to give myself to someone the way in which a boyfriend and girlfriend should, in an emotional manner, so to speak.

I am scared of so much at current; but, if I keep living my life being scared without ever having taken chances, there will be nothing of redemption come the end of my journey here on Earth... When I say scared, I mean something in which I do not even know how to explain...I am not trying to use my Klippel as a scapegoat, but it certainly makes it harder and the edges of life more jagged, if you will. To share your pain with someone else, all the while trying not to burden them, is perhaps one of the scariest things I will have to maneuver. 

You will not see me write about my relationship here (well, not any of the specifics, anyway) out of respect for him; I am simply writing this post to let readers know that I am forging ahead with my life in spite of past (and current) fears: I refuse to let the fear in which this condition has imparted upon me to drown out the better parts of life, at least not if I can help it. I have seen many a Klippel patients date, have relationships, get married, etc. despite their issues, and they have inspired me to try and put myself out there in a way I previously never though possible due to my own anxiety. I still have so many issues to work through, but I am at least trying, and for that much I do commend myself.

Hope you all are well!

-Arianna

Financial Stressors

Hi guys! Hope you all are as well as can possibly be! Within this particular post, I would like to talk about something in which I find to be a particularly distressing matter at present: finances. I know I am not alone in this plight, and that many others struggle in this regard as well. The current challenge for me is finding a job that will accommodate my current medical needs; not to mention, trying to figure out if seeking one out is truly even a viable option at this point in time (given my erratic and unpredictable medical circumstances).

Let me preface the rest of this post by saying this: after battling for many years to obtain it, I am on disability. It was a long and stressful battle, and I could not have obtained it without the help of a competent lawyer, my parents, and two others well versed in social security. It was, indeed, much overdue by the time in which I actually received it.

After the non-stop surgeries and hospitalizations I endured, one may have assumed it would not have been so difficult of a battle (especially since I also live with debilitating chronic pain)... However, I was rejected several times before I finally had to go to court to explain my particular predicament, as well as the ins-and-outs of this condition for those in charge (they knew nothing about it prior).

I am not a lazy person; I come from an extremely hard-working middle-class family. My dad, up until last year, was working four jobs simultaneously. He had no days off, and it was hard to see him endure his brutal work schedule for so many years, even though he hardly ever complained. Instead he would say he felt lucky to have the opportunity to wake up each day and work... in that way I somewhat understood him, but it was still not easy to watch a love one break their back day after day to meet basic familial needs. Then there was my mom, who juggled two jobs of her own aside from being there for me through every single hospitalization. My eldest sister went to school full-time at an excellent (challenging to get into college) school and worked full-time as well while graduating with a 3.7 GPA. I come from a family full of hard workers. And then there is me... the one who cannot do much in terms of tedious jobs because my accommodations are nearly impossible to be met. At current, sitting for too long causes me a great deal of pain as does standing for even short periods of time. I am often great at hiding my discomfort when in public venues or amongst other people, as I do not want to be known as that person who is constantly complaining...sometimes, though, that works against me as people then do not believe me when I tell them I am in such a great deal of pain most of the time. I guess I am a rather good actress when need be! ; ) The only people that can really see through my facade are my parents; they can tell by the look in my eyes whether or not I am experiencing discomfort, no matter how much in which I try to hide it. They are also two of the only people I feel comfortable expressing my pain to; and I know they would never have the audacity to judge me.

Still, not being able to work impacts me in a couple of different ways. My current income is one in which I am very grateful to have...prior to it I was living on practically nothing as far as extra money is concerned... Of course my parents provided me with a place to live, and other essentials (I realize how spoiled I am to have even had that, and it is something in which I took for granted in the past). But, with my mom constantly being out of work due to my hospitalizations (in which she did not get paid for in terms of time off) she lost a great deal of money and my dad was merely trying to keep us all afloat. I was not born into a situation where my parents could afford to constantly give me money to go to the movies constantly, or I could go to the nearby mall and just blow a little extra cash. Sure, I was spoiled in a multitude of ways, that much I will not deny, but I quickly learned how costly this world could truly be! With the social security income I have now, I am able to stay afloat and have somewhat of a social life in terms of going out places and what not. However, attending a school that is $40,000 grand a year without room and board is at times a burden. I worked very hard to get into this particular school, and have grown to love it there. In terms of commuting, it is a mere 15 minutes away from my home. I do not regret my decision to get an education there despite the cost, but I do at times feel stressed about the financial aspect of my education. I will need to put aside 500 dollars for books for this upcoming fall semester, and that in itself will limit what I can do greatly this summer.

Not to mention the psychological aspect of not being able to work; throughout high-school, I balanced working with academics and being in and out of the hospital constantly (despite my chronic pain at the time). What has changed since then that has not allowed me to work? Well, the state of my left buttock is one thing. The other night I was at an award ceremony for my sister and sitting was tremendously painful, even though it was only for an hour. Even after, I was so incredibly sore! The chronic pain in my lower left leg has also increased throughout the past few years, along with the intensity of my infections. I also grapple with depression and OCD, although I try to conceal the extent of my struggles with those to my friends as well. I am not ashamed, but I do not know how to explain it to them in a way in which they will understand. Anyway, emotionally, I often feel useless being unable to work. After all, I come from a long line of hard workers on both sides of the family... The guilt that accompanies not being able to provide for myself in the way in which I wish I could often eats at me psychologically; as I said prior, I often feel useless that I cannot contribute more financially.

I am currently investigating ways in which I can make money from the comfort of my home. Someone on Facebook mentioned Avon to me (being a representative). This is certainly something I may consider as I love makeup tremendously to begin with!

Sometimes, everyday feels like a battle....whether it's physically or emotionally. I think you just have to push on, though, and do the best you can given your circumstances. No, I am not Paris Hilton and I will probably never reach even near that level of wealth. Working to me, however, represents more than being able to buy fancy things; it represents morals, it builds character, and helps you to appreciate what you have more. I cannot wait for my chance to come again, whether that is now or in the future... Some of my happiest (albeit most painful days, standing on my Klippel leg for 6 hours at a time!) was when I worked at a supermarket. Disability has been a great start, and I am so grateful for without it I would be undoubtedly struggling to get by. However, I do not wish to live this way forever if I have a say in it... being completely reliant on the government to get by financially makes me rather uncomfortable. However, I understand that there are people out there who have no other choice, heck I have been and am one of them at current! For those people, I feel great empathy as I bet they too wish they had the opportunity to earn a living for themselves... sitting at home in pain and constant boredom is not all it's cracked up to be, you know. ( ;

- Arianna

Because I'm Happy

Hello everyone! I apologize as it has been quite a bit since I have posted an ample body of writing on here... Truth is, I have been busy recuperating from my last surgery along with enduring a harsh bout of influenza. Fortunately for me, the influenza hit a few days following the surgery so I was not forced to deal with the two extreme

pains simultaneously. Within this particular post, there is a message in which I would very much so like to relay – perhaps this one is more geared towards Klippel Parents and caretakers alike...but I believe Klippel patients will relate to it, too! Nonetheless, I feel it is an important one to extend on here to those of you who so graciously read this blog on a continual basis (and for that, I would like to send my utmost and sincerest gratitude).

The vast majority of my posts on here dole out the difficulties in which my particular case of Klippel has caused me, whether that is in a physical or emotional regard. A lot of times, I think about this blog and the message in which I want it to relay to the KT Community/Vascular Anomalies communities as a whole... And, is that message consistent with the work in which I am doing on here? That is where things get a tad bit more complex... Many a time, I write about medical difficulties in which I am experiencing; writing is absolutely cathartic for me. I have also dedicated a great deal of posts to issues surrounding the disarray of my mental state (depression, OCD, PSTD). Please do not misunderstand me, for I do not regret writing those posts by any means whatsoever. In fact, I admire how raw they were in nature as they were not the easiest to share (given that many who read this blog are close friends and family of mine). What I do regret, however, is the lack of positivity in which I've included in this blog since it's beginning. True, the vast majority of the time since I have been writing this particular blog has been during times of extreme hardship, whether I was a septic inpatient or at home feeling suicidal. Yet, there have been good times and I believe it is just as vital to share those experiences with readers as opposed to primarily ones in which I'm in the hospital or feeling unbelievably depressed.

Obstacles, of course, are not exclusive to Klippel patients by any means whatsoever. Our obstacles may differ in nature from those of the “normal” person, but the irrefutable truth is everyone walking this earth's surface has them. While our plight is unique, I do not believe it to be impossible in terms of finding happiness and even reveling within it. For those with depression (like myself), happiness can indeed be an ongoing battle...but it is not an impossible one despite all in which we may endure on a constant basis.

What I do not want is for a parent of a Klippel newborn to find this blog page and to feel discouraged by my words – I do not want them to think that their child is bound to be an emotional wreck who will endure frequent bouts of hospitalization along with chronic pain. While this has been a part of my journey, it does not necessarily mean it will be a part of your childs as each case of Klippel is indeed, well, different. Not to mention, there have been some major breakthroughs within the past several years surrounding the physical component of this condition... A chemo medication entitled Sirolimus is actually making a momentous difference within a number of Klippel patients lives for the better! Who ever would have thought that a chemo medication could have such a wonderfully positive impact on such complex cases of vascular anomalies? I certainly would not have thunk it, but fortunately for many of us, the incredibly adept Dr. Adams did! Not to mention, technology has improved drastically since the time in which I was a baby myself. My interventional radiologist at Children's is now able to perform life altering procedures for me and others in regards to my Klippel that were non-existent all of a mere ten years ago...

As for the psychological component, progress is being made here as well. The team at Cincinatti Children's has just added a psychologist as part of their Vascular Anomalies staff for the first time ever (a huge round of applause to them). Children's Hospital Boston will hopefully be adding one soon (I will keep you all updated on that as I become more aware). Not to mention, mental health needs of chronically ill patients are becoming more recognized throughout the globe. Several people – professionals and patients alike – are becoming more aware that treating the mental part of a chronic illness is just as vital as treating the physical component.

So, as I was saying prior, I do have good times, although they may sometimes get lost in translation due to the absurd amount of chaos in which this condition throws at me! What you don't see, however, is how hard I was laughing before a surgery, or the ocean-wide smile plastered on my face the minute a song I like comes on the radio. Right now, I do consider myself to be in a great place – physically and, for the most part, mentally too! That does not mean everything is perfect, but rather that I am embracing the good in which my life has provided me with at this moment in time. I am back on the antidepressant I had to stop abruptly due to the Sirolimus (as they interacted with one another) and am in a much happier place overall. I am practicing Mindfulness a great deal as well, too. In sum, life is good and I am greatly anticipating the upcoming months!

There is hope, especially in terms of this condition. With Klippel, I do not believe that hope breeds eternal misery. With all that is happening in terms of research and technique, quite the opposite, actually!

The way I see it, we are all here for a speck of time... We do not know when our time on Earth will be over, and tomorrow is not guaranteed. So with that said, be kind to people. Be kind to yourself. Appreciate what is surrounding you at any given moment – practice gratitude. Realize that the clock is ticking and that every moment that passes is one in which you will not get back. As grim as this may sound, the bleak reality is that we will all be 6 feet under one day. Our time here is so short and if we can embrace the obstacles in which life throws at us, we can than learn from them and continue on as wiser souls.

Lots of love,

Arianna

Taking it Back a Notch ...

I always say this, but I truly was the happiest baby and had the best childhood despite any troubles I endured with my KTS. Life was (and despite the many challenges I have endured over the years, like so many others in their own way) and is still good and I have a lot to look forward to! - Arianna

Chronic Pain May be Genetic?!

"Our study is quite significant because it provides an objective way to understand pain and why different individuals have different pain tolerance levels," says study author Dr. Tobore Onojjighofia, who explains that identifying whether a person has any of these four genes could help doctors better understand their patients' pain perception.

Read more here

- Arianna

Can We All Please Stop Judging the Book by it's Damn Cover?!?

Sometimes, I feel really defeated living in a world inundated with such ignorance – when I use my handicap plate, it is not atypical for people to scoff at me and give me death stares. Those of you who read my old blog, KT Fabulous, may remember about an instance where a woman screamed at me in a Target parking lot for having used mine... I remember trying to tell her in a calm manner that it was indeed mine, and her yelling back at me “yeah, right!” and droning on and on about what a horrible person I was... I was so incredibly humiliated, this woman was shouting at me in a parking lot filled with customers on a busy Saturday afternoon. After, I was so torn up by this woman's verbal tirade that I called my parents and therapist in tears... I was so shaken up! The only time in which I ever even use it is when I am in a great deal of pain, as I would never want someone who needed it more than I to be denied the opportunity to have it. These days, however, I am almost always in a great deal of pain and almost always need to use it. I try not to let the stares of ignorant elders and younger people alike bother me, but sometimes it does get to me. Sometimes, the hate-filled stares make me want to break down in tears right there in the midst of a public parking lot filled with an array of strangers...

That is why I believe it is vital for us all to show a lot more love and compassion to one-another, and to do so it is instrumental that we do not judge a book by its cover! I would be lying if I said I have never experienced feelings of envy in regards to other girls – especially in my younger years when vacationing in Aruba. I remember seeing stunning, tall blondes who had the most beautiful legs – I will never have that, ever, I would think to myself (at least not in this lifetime). Upon thinking that, a feeling of sadness would fill my soul as that reality sank into me deep down within. I wanted to be that girl, that girl who had the flawless legs and could parade around in a bikini without receiving a host of curious stares... Why the hell couldn't I be THAT girl? Why was I that one in a million? Why ME?

And yet, I knew nothing about those girls. The girls whose bodies in which I wanted to have as my own so badly, were ones in which I had never even spoken to before... I assumed that because they had the perfect body, they had the perfect life. Gosh, was I ignorant. For one, I knew nothing about invisible illness in terms of mental and physical health. Who was I to think they had the perfect life without ever having really gotten to know them? What gave me the right to assume that?

My own illnesses (compiled with other life experiences), however, have taught me that judging a book by its cover is so utterly detrimental to the world – I have been the one who has done the judging in the past (i.e. assuming girls with perfect bodies had the perfect life) and the one who has been judged by others (well, she doesn't look sick) and there is no good to come of it. So, as cliché as it may sound, let's not be so quick to judge the person walking aside us in a store or on the beach... assumptions can be rather dangerous, and can cause a lot of hurt. The “perfect” body does not equate to the perfect life. Richness does not guarantee happiness. Looks and outside appearances can be so utterly deceiving... and in a world obsessed with outside looks, we must always remember there is more than meets the eye!

- Arianna

Post-Op Day Two, Several Pictures Included

Yesterday, I had my miniscule procedure with Dr. Alomari from interventional radiology done at Boston Children's Hospital. The focal point of the procedure was the ankle and foot, both of which are still in a extraordinary magnitude of pain despite the medicine in which I am on (10 mg, Oxy). In sum, he injected three different areas with medicinal needles, including the ankle, foot, and thigh. Just prior to the procedure, I inquired to him about potentially working on the thigh area as well (it has been leaking a substantial amount of lymph fluid in recent times). So (despite his grueling schedule that day), he graciously agreed to inject that area as well (as opposed to c02 lasering it, which we have done on that particular area in the past).

Prior to the operation, I was required to have a series of pulmonary functioning tests done. The was my first time ever undergoing this specific series of tests; the reasoning behind the testing was due to one of the chemo medications in which Dr. Alomari was going to be injecting within me. Even though the amount in which he injected was incredibly bijou, the testing was still a hospital requirement as a mere matter of precaution. Below are three pictures mom took while I was undergoing the testing; I had no idea she was even taking them until she texted them to me later!

Pf Test

Me and Katelynn after surgery yesterday

Now, onto some of the more personal details regarding the day... I awoke feeling a great deal of anticipation, keen to have the procedure done with as I could hardly tolerate the pain any longer. The throbbing and burning sensation throughout my foot and ankle was momentous in nature, and I had no abatement from the lidoderm patches the night prior...much to my disappointment. Just before the procedure, I was greeted by one of my favorite hospital staffers to date, Jenn from hematology. I first met her several months back prior to starting the Sirolimus. She is so incredibly kind in nature, and such a truly thoughtful person. Even though I am no longer one of her patients, she still took time out of her busy day to come by and (literally) hold my before I was taken into the procedure room. Tomorrow, I will be meeting with her and Dr. Trenor at 9 a.m. To devise a plan about safely resuming the Sirolimus sometime in the near future (more about that in a future post). I am quite fond of Dr. Trenor as well, and feel incredibly lucky to have such a world renown hematologist as part of my staff. The way in which I see it (based upon several testimonials I have heard from chronic illness colleagues throughout the past several years), a Dr. who is good at his craft is a dime a dozen. However, to have a Dr. who is both empathetic and skilled in his/her specialty is, well, incredibly rare. I can truly say that all my Dr.'s ooze both empathy and knowledge, which is why I continue to trust them with my life and will always speak highly of them.

Me and Dr. A right after surgery

Dr. A and the amazing Cindy K. from interventional radiology. Love these two!

Picture of thigh area right after surgery!

Me in recovery room following surgery

Before I get too off topic, though, there are some shout-outs in which I would like to give! One is to Jose, the interventional imaging specialist who has worked on me within the past when I was vehemently ill. He so good-kindheartedly stopped by the waiting room just prior to my procedure to say hello, something in which he has done in the past as well. He is such an incredibly kind man; if you are reading this, Jose, thank you for the visit and all of the graciousness in which you have shown me in the past! Also, I would like to say hello to Pradeep, who is training under the skilled hands of Dr. Alomari. Everytime I see him he is so refined in nature and genuinely seems to care about his patients' well-being... I have no doubt that he will be a patient favorite one day and that he will continue to excel at his occupation as learns from Dr. Alomari. Also, a major thank you to Cindy for all in which she has done for me over these past several years. Whether or not she realizes it, she has truly been such a calming presence throughout all of my anxiety driven episodes and a pillar of strength. Aside from this, she is so enlightening as a nurse practitioner and overall person in general.

Upon awaking from surgery yesterday, I noticed that my post-operation nurse was actually a familiar face...it was Katelyn from 10 North West (the surgerical floor in which I am nearly always hospitalized on when inpatient). Turns out, she made the transition from floor nurse to post-op nurse a few months back. Although my memories from after the operation yesterday are rather hazy, I recall how lovely it was to have her as my caretaker again. She is so sweet! If you are reading this, Katelynn, thank you for all of your good care in the past, it was a pleasure to see you again yesterday (at least given the circumstances!). Also, a dear friend of my family (Jodie) and her sister-in-law surprised me with a visit just prior to my operation yesterday. Her son, Ben (a friend and fellow Klippel patient), just had a major operation done and is currently hospitalized across the street from Children's Hospital. Despite all of the post-op stress in which their family has surely been enduring, they so generously came to greet my mom and I. It is people as endearing as them who truly who inspire me to be a better person... they are always thinking of others despite their own plights. Please say some prayers for my friend Ben as he continues to recuperate from his operation and regain some of his strength back. Wishing you nothing but the best, Ben!

Adorable stuffed animal the beautiful Jodie and her lovely sister-in-law brought to me just prior to my procedure!

And, as always, thank you to my other friends and family for being there for me through thick and thin. As I have said in the past, having a chronic illness is truly a blessing in disguise... It has aided me in helping to realize who my true friends are throughout the years! It is easy to be there for people throughout the good, but to continuously be there for them throughout their trials and tribulations is another... well, that is what being a genuine friend is all about!

Thigh area today, no flash

Thigh area today, flash

Love you all so much, and will update soon!

Lots of love,

Ari

Today is Surgery Day

Today is the day of my surgery with Dr. Alomari; fortuitously it will merely be a day procedure and I should be able to return home after several hours. As I wrote in my last post, something had gone awry in terms of my ankle and foot within the past week or so. Despite his frenzied schedule, Dr. Alomari managed to squeeze me in for an appointment today following one of his procedures. I must say, this man has one of the best work ethics in which I have ever seen...although I can truly say the same for the entirety of the vascular anomalies staff at Children's that I have dealt with. Anyway, my ankle did not have

thrombophlebitis as I surmised it would prior to my appointment today. Instead, there are a bundle of cysts that are pushing up against the vein in my ankle, and the whole flare-up is superficial. Upon leaving, I asked about pain medication to get me through the night as the throbbing sensations have literally been intolerable... Cindy (the interventional radiologist nurse who I utterly adore) prescribed me Lidoderm patches. However, despite using three of them at once in the most painful area (as the directions stated I could safely do) I received absolutely no alleviation, which currently has me in a state of utter distress.

 Aside from my foot issue, I have a massive ear infection and despite having been on ear drops for a multitude of days now, I have yet to have a reprieve from the pain in which it has been relentlessly causing me. Between my throbbing foot,ankle, and ear, I feel as though I am about to implode. However, I trust that even though I will be in a great deal of pain following tomorrow's surgery, things will undoubtedly get better from here. Not to mention, my Klippel family has been nothing but loving and supportive as always and for that I am so incredibly grateful. I find it rather hard to connect with most other young adults my age, but my vascular anomalies friends are truly my soul-mates. I have fallen out of touch with a lot of other young adults my age from my hometown; it is nobody's fault, really, just merely a matter of them working a great deal and attending classes while I continuously grapple with my medical and emotional issues. However, I am lucky enough to have a core group of friends (aside from my vascular anomalies family) that are there for me through thick and thin, along with an amazingly supportive family.

On a heavier note (non-KT related), I awoke two days ago to a horrid tragedy; my dog had been vehemently ill in the morning time and my parents had to take her to the vet. It turns out that within the last 60 days, (at least that's what the Dr.'s surmise), she has gone deaf. Of course, I was able to tell for some time now that her hearing was not what it used to be, but I was hoping against all odds that it was some kind of exaggeration on my behalf...hearing the concrete news from the vet was absolutely tragic. I recall the days in which I would call her name from my room and she would come running in; she would lay in bed with me when I was sick due to my KTS...those days are now nothing but a distant memory. Aside from her being deaf, she has an enlarged heart along with a leaky valve. Not only that, but one of her leg joints is dislocated and the other one keeps popping in and out. To see her in pain is probably one of the most arduous things I have had to endure within my lifetime...I would take all her pain away from her in an instant if I could, but unfortunately I do not have that capability.

On a lighter note, it is my eldest sister's birthday today! She and I have had our disagreements throughout the years (like all sisters), but overall I am very proud of her and have an abundance of admiration for the person in which she has become. I hope that when I am able to work again, I have even half the work ethic in which she does. Below are some pictures; some are from today, while a couple of others are from months prior.

Dad wheeling me out of Children's today after my appointment with Dr. Alomari.

A picture of my swollen foot and ankle taken a few hours back.

Me in one of the interventional radiology rooms today awaiting to see Dr. Alomari for my appointment. I was rather nervous!

My sister Danielle and I when we were younger!

My beautiful and most loyal friend, Fe June. Please send well wishes her way!

May you all be well!

Ari

Current KT Problem: Foot and Ankle

If I am guilty of anything (in terms of this blog,) it is posting too much material within too short a period of time. However, there has been a lot going on as of recent and a great deal of happenings to post about. While I have been writing about the Sirolimus (and my decision to halt it, at least temporarily), tonight I will be focusing on a different matter related to my KTS.

At current, my ankle and foot are terribly swollen and in a great deal of pain. Based upon the feel of the skin and where the redness in (in a vertical manner that can practically be mapped out), my mom and I surmise that the current issue may be a case of thrombophlebitis. The Ketorolac I have at home has not been working, and I currently have no pain relief available... As far as heating pads and ice are concerned, any pressure that touches the area is terribly painful. I soaked it in hot water earlier, and that was fine. All in all, though, the pain, redness and tenderness remained the same.

Today, I spoke to Cindy, one of the most incredible nurse practitioners I have worked with in the past and present. She works in the IR department, and is often described as Dr. Alomari's right hand person. I asked her if he was in town (as I know a multitude of Dr.'s had been away at a Vascular Anomalies conference in Australia) and was delighted to find out he was back from his trip. With that said, my dad will be taking me to see him tomorrow and we will figure out how to proceed from there as walking on my foot is currently incredibly painful (along with the ankle).  

Below is a picture of the problematic portion of my KTS limb at present (it was taken in micro mode, with the flash on).

I will update on how my appointment went at some point tomorrow.

Arianna

Why I Stopped the Sirolimus: Part 2

What I am about to write on here is rather risque in content, but in order to begin to help readers understand why I stopped taking the Sirolimus, I feel it's vital to share this information... It is a passage derived from my own personal diary, one in which I swore I would never share with anyone. It is not modified in the slightest, and was copied and pasted directly from my own personal document. At the time this was written, I had been on the Sirolimus for a little over a month and was off the anti-depressant that had been helping me so greatly with my depression since I had started it (Viibryd). However, I was forced to come off this particular anti-depressant because it interacted with the Sirolimus, and reverted back to one that had helped me minimally in the past (Prozac). We (my doctors, family, and I) were quick to make the decision to wean me off the other anti-depressant in order to start the Sirolimus pronto, as my Klippel was undeniably out of control. At the time, it was my only hope of achieving medical stability. However, after a couple of weeks of taking the Sirolimus, I felt myself regressing back into a profound state of depression. The medication in which I was weaned off of was the only one that had given me a true respite from my depression in quite some time. So, with that said, here is a passage from my own personal diary, written during one of my all-time low points (while taking the Sirolimus and Prozac). Please pardon the foul language, as this was not initially intended for anyone to see. I am actually rather embarrassed to share it, but honesty genuinely is my policy on here.

Disclaimer: I am much more mentally stable than when I wrote this particular passage, and I am safe. By no means am I in danger of hurting myself. As I said prior, I am in a different state of mind than when I penned this particular piece of writing (or ramble, rather). If, however, you ever find yourself feeling anything like this, talk to someone immediately. Depression is manipulative and wants you to keep these feelings internalized...it does not want you to ask for help. If you ask for help, then the depression loses some of its power... In order to overcome it, though, it is of the utmost importance to seek help through a trusted family member, companion, or professional. 

April 10^thI don't really know what to type...I am depressed beyond belief. I just need someone to sit with me and listen to me blubber on for hours on end until I get all of the tears out. How did I become so incredibly f***** up? What happened to me? I finally am acknowledging my extreme and severe feelings of loneliness. It's not easy, f*** it's not. I feel lonelier than ever. THAN EVER. I HATE MYSELF. I HATE MYSELF, I HATE MYSELF. THE HATE CONSUMES ME. I'M SO TIRED OF ALL OF F****** THIS. I AM QUICKLY BUT SURELY TURNING INTO A F*** UP, BUT I AM TRYING TO TURN ALL OF THAT AROUND. STILL, I HATE MYSELF, EVER SO DEEPLY. THIS IS A HITLER TYPE OF HATE IN WHICH WE ARE SPEAKING ABOUT. HOW DID I GET THIS WAY? WHAT THE F*** IS WRONG WITH ME? SOMEBODY HELP ME. SOMEBODY, PLEASE. I NEED TO BE SEDATED RIGHT NOW, I NEED THAT. I CANNOT DEAL WITH ANY OF THIS, I AM FALLING TO PIECES. THERE IS NOONE TO TALK TO. PERHAPS THE SCARIEST THING OF ALL IS THAT MY PLEAS ON HERE WILL NOT BE HEARD TO ANYONE.

In retrospect, it is awfully hard to believe that less than a month ago it was me who not only wrote this, but felt such horrific internal agony in which I resorted to writing such deeply demeaning words towards myself. Since resuming the anti-depressant in which I was weaned off of, I am beginning to feel much better mentally and emotionally. I still have plenty of days and times in which I feel low, but I do see the light at the end of the tunnel; I'm beginning to find beauty in even the most simplistic things in which life has to offer again, like the vast beauty of the fluffy white clouds in the sky.

Again, there is a lot more information in which I need to share with readers in order for them to comprehend my stopping the Sirolimus (at least for now). While I was on the Sirolimus, it definitely worked some medical wonders and I will be writing about those as well. I'll be writing more in regards to this matter soon, so check back if interested in reading more about my decision to stop this medication. 

Questions? Feel free to ask in the comment section. I will do my best to answer all and any in which you many have.

Lots of love, Arianna Helena

The Sirolimus Diaries: Update, I have Stopped the Sirolimus

For someone who used to shower upwards of 3 to 4 times a day (prior to my diagnosis and treatment for OCD), it was rather odd to find myself going days at a time without showering. In fact, aside from the undeniably noticeable changes in hygiene, I was sleeping more than ever before, too. I would awake for a few hours at a time, and then instantaneously fall back asleep as though I had been tuckered out from a full days work... Perhaps the most asinine part, though, was that I lost my volition to live. Suicidal thoughts ran rampant throughout my mind, and I did some risky things, fully aware of the negative consequences in which my actions could lead to. It's easy to look at pictures of me smiling with friends or family and think, wow, that girl seems really well-adjusted especially despite the medical chaos she has endured. That same smile, perhaps my own best manipulative friend (or enemy, rather), was the same one that allowed me to conceal my inner distress for quite some time before my mental collapse at 18.

There are a multitude of recent happenings that the vast majority of my Facebook friends don't quite know about, for these are typically not things one would advertise on a social networking platform. However, I have always made honesty (along with transparency) one of my top priorities in terms of this blog, and can say with the utmost sincerity that I have not strayed from that, nor do I have any intention of doing so in the future. With that in mind, it is time to share my experience as to why I have chosen to stop taking Sirolimus (for now, at least) in spite of the past two non-chaotic and most stable months (medically speaking, which is a rather long duration of time for me). At this point in time, I have been off the Sirolimus for approximately a weeks time. I was on it for approximately 3 months up until then. I could quite honestly write pages in regards to this current topic, so I am going to split up my writing in sections. This is the first post in regards to stopping the Sirolimus but it will undoubtedly not be the last. If interested in why I decided to stop this medicine (with the support of Dr. Trenor, after sending a letter to him explaining my reasoning), check back for I will have a lot in which to share with you guys.

Love, prayers, and blessings,

Arianna