Friday, December 27, 2013

My Sister's Wedding with Cellulitis

Feeling lonelier than ever, I returned back to the hospital to be readmitted (as had been previously planned). The doctors had let me leave the hospital for the day to attend my sister's wedding. I was so glad I was able to attend and witness the beginning of her new life, but it was incredibly hard to maintain my composure throughout the entirety of the day.

With the help of hefty dosages of various pain pills and antibiotics, I was able to make do. However, I felt so incredibly sick inside. My butt (the area impacted by the cellulitis) was still throbbing like crazy, and my lower left calf (the Klippel impacted one) had a hard time holding up throughout the day. In this case, it was truly my mindset that allowed me to get through the day. This was the most important day of my sister's life, and I wanted nothing more than for her to enjoy her day. I did not want the focus to be on me, or to be a nuisance in any way whatsoever. So, I did my best to smile and hide the the intense pain in which I was feeling throughout the entirety of the ceremony and reception that followed. Do this for your sister, I kept thinking. Do this for your family. & so I did just that. In return, I got to attend one of the most beautiful ceremonies in which I had ever witnessed. As I stood with the other bridesmaids at the church altar, I watched as my sister and brother-in-law gazed into each other's eyes. They were so entranced with one another, and the look on their faces was nothing less than pure, genuine, honest love. Something clicked within me that day. I began to wonder if anyone would ever love me so unconditionally, and from that day forward I could no longer deny my inner romantic.

 I want someone to love me like that, I thought. Still, leading such an erratic lifestyle in which I am constantly being shuffled in and out of the hospital, I could not help but feel as though I would never find the one for me. Maybe I'm just not destined to find my soul-mate, I thought. At 22 years old, I have had no luck in terms of dating. I would be lying if I said that it did not bug me for I feel as though I am ready for a relationship despite my never-ending medical chaos. Still, at this age, I am having a rather hard time finding someone who can deal with a girl whose life is so unpredictable due to such an intrusive medical condition. The nurses that night said that my returning to the floor was somewhat surreal; it was almost like a scene out of a movie so they had said. I returned to my usual floor (10 Northwest) wearing my tight fitted emerald green bridesmaid dress with my hair extensions and full face of makeup in tow. We never see anything like this, said one of my favorite nurses. Indeed, it was quite odd; normally, my hospital attire consists of nothing but ratty sweats and a makeup free face and unwashed hair. Upon arriving, I felt so incredibly out of place. I wanted nothing more than to be amongst my family and friends, as opposed to being hooked back up to IV antibiotics and being inpatient once again.

The feeling of loneliness that had crept upon me during my return to the hospital was nothing less than heart-breaking. I wanted to be with my family to continue the celebration, but the reality of my life was preventing me from doing so. Still, I knew to get better I had to comply with the reality of my life and so I did just that. Now I am home, and hoping to stay here for at least a good couple of months as I truly feel burned out physically and emotionally. While many say I did not look sick (I guess I put on a good facade), I know that deep down inside I was struggling. Still, I would not have had it any other way as I got to partake in the beginning of my sister and brother-in-laws new life as husband and wife. It was truly a day to remember, and I feel blessed to have had the chance to even attend. Below is a picture from that day. Hope you all had an amazing holiday!

 Lots of love, Ari

Monday, December 16, 2013

Inpatient for Cellulitis

Hi everyone - unfortunately I am writing this post from my hospital bed on 10 NW at CHB as I was admitted for a cellulitis infection. Last night, I took a spontaneous nap. Upon awakening, I had this familiar, horrible pain radiating from deep in my left buttock. I knew this pain well, and therefore had mom take me to the emergency room immediately. I was still taking Keflex 1000 mg daily - but apparently that was not good enough for my body. This morning I had a 101 fever, chills. severe pain in both my left buttock and thigh (It spread down there throughout the course of the night), and redness. At present, I am on 4mg of Morphine every two hours which I have been told is a hefty dosage. Below is a picture I took earlier today of the area. Please pardon the fact that it's of my butt haha. From what I have been told, it has gotten redder since this picture had been taken, and of course I had to take it with my lousy blackberry camera... - A




Thursday, December 5, 2013

It's here, MY Petition!

Hi everyone! So as many of you who read this blog may know, I am trying to advocate for better mental health care for Klippel  patients worldwide. While this particular petition is geared towards Children's Hospital Boston, I am hoping this will have a domino effect. If Children's adopts a psychologist onto their vascular anomalies team, then hopefully Mayo and other hospitals will look to them as inspiration!

Please sign and share! I need all of the support in which I can get on this project. Please put on your social media accounts, I need as many signatures as possible and if possible please leave a comment as to why this cause is important to you!

Here is the link! Please click here


Sunday, December 1, 2013

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 3rd 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  

Wednesday, November 20, 2013

Continued Antibiotics, etc.

Hey everyone! I know I have not written in a bit, much to my deepest regret. Access to a fully functioning computer still proves to be challenging at this point, but I will have a new one by Christmas!

I have been out of the hospital since the end of September now and it has been such a delightful treat. Just earlier today, I spoke with one of the VAC nurses Erin in regards to my antibiotic situation. Initially, upon coming home, I was taking 2000 mg of cephalexin daily (twice a day). We then lowered it to 1000 mg of cephalexin daily and I was due to finish it today. However, due to my unchallenged success on these oral dosages, my doctors have made the decision to keep me on it for another two months as a prophylactic. I was quite pleased with this decision as I have my sister's wedding towards the end of December. The medicine does make me feel slightly sick, but probiotics can help counter this.

As far as debulking my ankle is concerned, I am planning to move forward with this procedure. However, nothing will be finalized until I meet with Dr. Spencer, Dr. Alomari, and Dr. Fishman on January 3rd


I am still dealing with a great deal of anxiety and depression, however am working very hard to make it through each day and to be at least somewhat productive. The hardest part of being out of the hospital is readjusting to at home life while trying to maintain my health and reestablish normal daily habits.

Hope to update soon!

- Arianna

Sunday, November 10, 2013

These Days - A Quick Update!


Just a quick update! This is a picture of my ankle at the mall earlier – I was in so much pain in my calf area and could not wait to get home to rest my leg in bed. These days, I am on 1000 mg daily of an antibiotic (orally) to prevent the possible relapse of a cellulitis infection. I will call to check in with VAC clinic on November 20th (as planned) to see how much longer I should be on this medication, as a person's body can indeed become tolerant to it. I am also on 15 mg daily of Meloxicam (imagine a really strong Advil) for the chronic pain in my calf area; however, I still experience a great deal of tenderness within that region.

I realize I am extremely blessed as I have been out of the hospital for approximately a month now! These past several months were truly a trying time physically and mentally; I undoubtedly could not have made it through without the help of my family, friends, doctors, and nurses. Each day, I am regaining my strength little by little. What do I mean by that? Well, following the series of serious infections, I was left in a physically fragile state – just a few steps were enough to make me lose my breath and I would need to sit down and reboot. These days, I can (usually) go a good few minutes walking before I need to sit and regain my strength again.

Also, my co2 laser is healing beyond wonderfully – this was a procedure done by Dr. Alomari while he simultaneously operated on a couple of cysts in the Klippel area. I will take a picture of it scarring over and post it soon! For now, I am hospital free and trying to indulge myself back into a “normal” everyday routine. It's not as easy as it may sound, as mentally I have been diagnosed with Post-Traumatic Stress Disorder (PSTD) from all that has happened this past year. It is not uncommon for me to continuously have dreams in which I am being rushed into the ER due to a rapidly spreading infection. They all feel so incredibly real, and I often awake in a pile of wet sweat and have to catch my breath. I just try to remind myself that all I have is the present – I don't know and have little control of what will come of tomorrow or the next day or where I will be a year from now, medically speaking. Therefore, it is rather useless to worry about the future in that regard. Still, at times, easier said than done.

More soon!

Also, please send well-wishes to one of my dearest KT friends Cheyenne right now who is back in the hospital due to a series of clots. She was just released after being admitted for a solid month and is now back again. She is such an incredibly tough girl and undoubtedly a warrior, and I pray that her body will allow her to have some peace sooner rather than later.

- A

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

Thursday, September 19, 2013

MRI

I wanted to update, and I have a fair amount of energy to do so right now. The problem is that my mind is running rampant and I don't even know how to formulate a sequence that would make sense...

All I can say is this: This most recent infection has traumatized me. If you read below, then you know I woke up with this infection. Literally, I sat up in my bed and had no idea what had hit me. My back, buttock, thigh, and knee (down to just before the kneecap) had never hurt so badly in my life.

The other night, Dr. Alomari forced me to go for an MRI. I was reluctant to do so given how febrile I was; the last thing I felt like doing was sitting in a confined space in a chilly room with a dim atmosphere. My head, up until yesterday, felt as though it was being hit repeatedly by a hammer. So, I gave some resistance in terms of initially going for the MRI. However, one of the best nurses of all time, Kristen, sat down and explained what would be at stake if I didn't have it done. So I obliged and went and had it done; and boy, was I lucky I did. All of the areas in which I described as being excruciatingly painful featured abnormalities in the MRI. These abnormalities were in the form of inflamed cysts. The problem with these cysts is that they create their own thick walls around them; therefore, when I was getting treated with intravenous or oral antibiotics, the medicine was not reaching those areas. Rather, the bacteria in those areas kept growing stronger and more malicious. There was no way for the medicine to get to them. What needed to be done next was surgery in which Dr. Alomari would aspirate the fluids through schlerotherapy.

I will continue on with the surgery in my next post (hopefully later today or tomorrow).
Hope you all are happy and healthy - A

Monday, September 16, 2013

Hello Again, Hospital = (

Hey everyone! I am, as some of you may already be aware, back in the hospital yet again with another cellulitis infection. Here is how it all started: I awoke Thursday afternoon with an intense pain that spread from my back down the middle back of my KTS impacted leg. It felt as though someone were skinning that part of my body alive; it was as though someone was carving into me with ten knives throughout the area. I have had that feeling many a time before with cellulitis, but this time the pain level was so amplified that every passing moment felt like sheer torture.

My dad drove me into Boston immediately, where it was proven through my WBC that I was indeed infected. I already knew I was, but unfortunately in the emergency room you often get doctors who are unfamiliar with your situation. I, however, know the feeling of infection so well that I trust my intuition when things aren't right. Shortly after arriving to the hospital, I sparked a 39.3 temperature, and my heart rate was down into the 80's. The redness came with vengeance, albeit after hours of being in the emergency room. I was told the blood cultures were already growing back a bacteria; this was rather odd to hear as I have only grown something back twice in my life before. In fact, I think Dr. Fishman said I was the only one of his KTS patients who has grown back any specific kind of bacteria. In a way it's good, as it tells you exactly the bug that needs to be treated. However, it also proves the infection is in my bloodstream, which is rather frightening. I have had sepsis several times before, and of course it is incredibly trying... However, this infection is by far the most painful and stubborn one I have had thus far. By the way, I grew back Strep B Gram Positive in my culture.

There is so much more I want to tell you all about this infection, but due to how fatigued I currently am, I will continue this post either tomorrow or the next day, Wishing you all nothing but well! The only blessing about this hospitalization is my incredibly strong and brilliant KTS friend Rachel is here on the same floor as me and her lovely mom is staying with her. It is so nice to be able to get to see them while here, they truly are such brave, beautiful people. However, Rachel is going through a tough time herself so I would love it if you guys could open your heart to her and say some prayers.

My eyes are starting to shut by themselves, so that's my signal to go, for now at least. I look forward to writing more soon.

Until next time, - A xoxo

Sunday, September 8, 2013

Foot/Ankle Issue

Sometimes, I become rather shy in regards to my blog nowadays as I know a lot of family and friends are reading it. At first I was a lot more comfortable being so raw and open about my deepest emotions, but sometimes as of late I have become shy. It's almost as though I would rather complete strangers read it than those closest to me, if that makes even the slightest sense... It's not that I do not appreciate people caring enough to even take time out of their day to read up on me, for I do... I can just be incredibly coy and timid in regards to my writing ability and the way in which I express my emotions.

But...Carrying on! Below is my foot as of current. My ankle/top of foot (outer left part) have been in a momentous amount of pain these past couple of weeks. I went to my interventional radiologist and was told it was inflamed and there were some small clots. As far as treatment, I will know a more definitive plan come September 13th at the Vascular Anomalies Clinic.


Until then, it's Advil 400 mg at a time for relief. I found it helps more than my Meloxicam (another NSAID) and since you cannot mix the medications due to them being in the same class, I have solely been relying upon the Advil.  - A


Wednesday, September 4, 2013

Tell me this doesn't Stroke your Soul

The words that follow are not my own. Rather, they belong to a man named Kevin who I have never met in person or had communication with in any way whatsoever. Still, after reading them, I was so unbelievably touched that I had to share this. Keep reading and find out why. "With one small gesture you can change a person's life"

One day, when I was a freshman in high school,
I saw a kid from my class was walking home from school.
His name was Kyle.
It looked like he was carrying all of his books.
I thought to myself, 'Why would anyone bring home all his books on a Friday?
He must really be a nerd.'
I had quite a weekend planned (parties and a football game with my friends tomorrow afternoon), so I shrugged my shoulders and went on.
As I was walking, I saw a bunch of kids running toward him.
They ran at him, knocking all his books out of his arms and tripping him so he landed in the dirt.
His glasses went flying, and I saw them land in the grass about ten feet from him...
He looked up and I saw this terrible sadness in his eyes.
My heart went out to him. So, I jogged over to him as he crawled around looking for his glasses, and I saw a tear in his eye.
As I handed him his glasses, I said, 'Those guys are jerks.'
They really should get lives.
' He looked at me and said, 'Hey thanks!'
There was a big smile on his face.
It was one of those smiles that showed real gratitude.
I helped him pick up his books, and asked him where he lived.
As it turned out, he lived near me, so I asked him why I had never seen him before.
He said he had gone to private school before now.
I would have never hung out with a private school kid before.
We talked all the way home, and I carried some of his books.
He turned out to be a pretty cool kid.
I asked him if he wanted to play a little football
With my friends.
He said yes.
We hung out all weekend and the more I got to know Kyle, the more I liked him, and my friends thought the same of him.
Monday morning came, and there was Kyle with the huge stack of books again.
I stopped him and said, 'Boy, you are gonna really build some serious muscles with this pile of books everyday!
' He just laughed and handed me half the books.
Over the next four years, Kyle and I became best friends.
When we were seniors we began to think about college.
Kyle decided on Georgetown and I was going to Duke.
I knew that we would always be friends, that the miles would never
Be a problem.
He was going to be a doctor and I was going for business on a football scholarship.
Kyle was valedictorian of our class.
I teased him all the time about being a nerd.
He had to prepare a speech for graduation.
I was so glad it wasn't me having to get up there and speak.
Graduation day, I saw Kyle.
He looked great.
He was one of those guys that really found himself during high school..
He filled out and actually looked good in glasses.
He had more dates than I had and all the girls loved him.
Boy, sometimes I was jealous!
Today was one of those days.
I could see that he was nervous about his speech.
So, I smacked him on the back and said, 'Hey, big guy, you'll be great!'
He looked at me with one of those looks (the really grateful one) and smiled....
' Thanks,' he said.
As he started his speech, he cleared his throat, and began...
'Graduation is a time to thank those who helped you make it through those tough years.
Your parents, your teachers, your siblings, maybe a coach...but mostly your friends....
I am here to tell all of you that being a friend to someone is the best gift you can give them.
I am going to tell you a story.'
I just looked at my friend with disbelief as he told the first day we met.
He had planned to kill himself over the weekend.
He talked of how he had cleaned out his locker so his Mom wouldn't have to do it later and was carrying his stuff home.
He looked hard at me and gave me a little smile.
'Thankfully, I was saved.
My friend saved me from doing the unspeakable.'
I heard the gasp go through the crowd as this handsome, popular boy told us all about his weakest moment.
I saw his Mom and Dad looking at me and smiling that same grateful smile.
Not until that moment did I realize it's depth.
Never underestimate the power of your actions.
With one small gesture you can change a person's life.
For better or for worse.
God puts us all in each others lives to impact one another in some way.
Look for God in others.
You now have two choices, you can:
1) Pass this on to your friends or
2) Delete it and act like it didn't touch your heart.
As you can see, I took choice number 1.
'Friends are angels who lift us to our feet when our wings have trouble remembering how to fly.'
There is no beginning or end..Yesterday is history.
Tomorrow is a mystery.
Today is a gift.
I hope you all have a blessed day and lots of gifts ahead of you

Tuesday, September 3, 2013

Dreams Gone Awry

I just awoke from yet another dream in which I seemed to relive aspects of my very real past. Nurses, emergency rooms, infections; together, they paint a picture of story in which I am all too familiar with. As I have two more days left of my antibiotic and worry about rebounding once I am off, these dreams painstakingly haunt me to my core.

I don't know how I will ever get beyond my past, especially when I know there is more to come in the future. I am shaken and torn; I feel more fragile inside than that of when I was a little girl. I spend a momentous amount of time crying. What I would do to be without the anxiety that holds such a heavy grasp on me each and every single day. Yes, I see someone, and I am trying to work beyond my issues. At just 22 tender, though, I feel so impoverished in spirit with this condition at the moment. Yet I have to endure it for the rest of my life, I need to find a way to cope...



Thursday, August 29, 2013

It's my life 
And I'm not sitting on the sidelines watching it 
Pass me by
I'm leaving you my legacy
I gotta make my mark
I gotta run it hard
I want you to remember me
I'm leaving my fingerprints




I'm leaving my fingerprints



Tuesday, August 20, 2013

This is not an image of mine. It is one I found of a website that resonated deeply within me. Hopefully, it will inspire you as it did me. Have a lovely day xoxo - Arianna

Monday, August 19, 2013

It's Not All Bad, You Know

Often, when I write on here, I think about the audience in which I am speaking to. I know there are moms and dads of KTS patients, and younger KTS patients as well who read some of my writings. Lately, it's been pretty dismal on here, for which I am partially responsible... Yes, life circumstance plays a role, undoubtedly, but it's also what we make of it.
For that reason, even though I am going through a tough time, I found it worthy to dedicate a post to some of my happier times! Also, it's important for me to mention that there have been countless heaps of happier times, even with this condition! Right now I am in somewhat of a low place with it, but like everything else in life, there are good and bad times. Just because you or your child may have been born with such a rare, manipulative syndrome does not mean all is lost - BY ANY MEANS. So, my sincerest apologies if I have been making things seem that way at all. It's like the saying that goes: If you want the sunshine, you have to put up with the rain. ( =

 Below, see me in some happy moments!


This night was a lot of fun. Some of my friends and I took a limo into Boston and went out for the night! 
As you can see, I am rather young here, but I always have the fondest memories of being young and doing things with my family! Here is my sister Danielle and I (I am not sure what amusement park we are at).
My sister and I used to have so much fun playing outdoors when we were younger! We always loved our Barbie Jeep, it was far better than any technology in which young kids engage in today! There is nothing like fresh air and a good time.
Here I am in high school (I believe it was 11th grade) during Spirit Week with my friend Kaitlyn. It was always so much fun to dress up and get silly.
Meeting some of my KT family last summer. This really was such a groundbreaking trip for me in many ways...I met the kindest of kind souls... This picture, in particular, is bittersweet because it was the last day of the meeting and we had to say goodbye to each other soon thereafter.
On vacation in Florida! I am a huge Florida fan, and always get such a happy vibe whenever I am there. Here, I am at one of the Disney amusement parks on a rented scooter. My grandparents, mom, and younger sister were also there. It was an absolute blast, and I was so happy to get away from Boston for a bit. The trip took place during one of the later winter months, and I was so happy to escape from the snow back at home!
This is when I went apple-picking with my family a few years back. You can see my sister to the outer left of this picture; we always have a lot of fun together. It's nice when you truly get caught up in a moment so much so that you don't even realize a picture is being taken!
This is me with my amazing best friend Fe June in Boston! She has been the best friend/sister I could have asked for in sickness and health. She is every bit as lovable to me as any human being, and I am so thankful she came into my life! I find Boston Commons to be such a peaceful atmosphere, so it was great to spend some quality time with my pal there. 
This is me in the Aruba ocean with my sister Alyssa! Vacationing in Aruba always brings back the fondest of memories, and it's a great chance to escape from home for a bit and forget about some daily stressors.
Here are my sisters and I before our flight to Aruba when I was in eighth grade! It was so early in the morning, but we were so elated to be going on vacation. I still remember getting into our car when it was dark out and what song was playing on the radio! Such a great time overall.


Bam!  & there you have it ( : That's all for now - A

Sunday, August 18, 2013

My Sincerest Plea

Dear Lord,

I am guilty of calling upon your name in my time of need more often than in my time of bliss, something in which I am trying to work on with great intent. My relationship with you has not always been the strongest, and I have not always been a believer, so to speak. While I “believe” now, I am not quite sure I believe in the traditional Catholic sense in which I was raised to believe... I do, however, acknowledge quite humbly that there is something out there, a deity of some sort, that is beyond me and mortals in general; there has to be, I mean doesn't there? I don't really question it anymore, to be entirely honest. When I stare at vast landscapes or witness the many contradictions in which this tumultuous, radical world of ours has to offer (think miracles and kind treatment versus brutality), I am rather certain there is an entity that holds unspeakable power and knowledge... I do at this point in time believe there are things in which us mere mortals are not meant to understand during this lifetime... anyhow, I am calling upon you now. Please restore me back to health and vigor, a state of bliss in which I have not been able to endure for several months now. I still feel quite horrid from my last infection despite this new “groundbreaking” medicine we have tricked my body into accepting... I feel rather out of my league here. If it I not one thing, it surely seems to be another like my infected arm, chronic KTS pain or anxiety and depression... At times, the burden feels too strong and I fear I wasn't meant to be a survivor, though in previous times I always thought of myself as one. It's not just myself in which I am asking for, but for my family and friends, too. I watch them watch me and see the deep emotional suffering it causes them, and I am powerless to stop it...

There is so much in which I want to do, so many people in which I want to help, and I cannot fulfill these duties from my bed... Please return me to health so I can not only resume my own daily schedule, but help others in a way in which I know I was always meant to. I was put here to help, and I am of no use to anybody while unable to help myself. Please grant me the gift of good health once again, and let the your sun's rays illuminate my fatigued soul once again. This is my public plea of sincerity... but not only for myself. There is so much suffering amongst others out there; how horrid would I be not to mention that of my KT brothers and sisters, at the very least? Some of them have suffered in the same manner, if not much worse... may you grant them the gift of restored health and a happy state of mind... The suffering in which this disease is causing me and my colleagues is so rampant at this point in time, please, whoever and wherever you are, grant us a break, and let us begin to heal as a community so we can help others...

Signed,
Desperate


Saturday, August 17, 2013

The Morning Sunlight

There are certain things you just can't prepare how to react to; it's not stuff you are taught in school or the homestead... nobody could have prepared me for being lifted out of my house into a stretcher and rushed into Boston, even had I known it was coming prior. I recall that on my way out, the morning summer sun shone into my own half shut tired eyes, it met my gaze straightforward. I saw something beautiful when it did, it was as though hope had taken on a physical form, and it was speaking to me in the gentlest of ways. The morning sunlight, in all its flamboyance, was there to tell me it would all be okay, no matter what happened from that point forward. The morning sunlight, so it seems, entranced me into its spell and captured my soul...it was something sublime...

Friday, August 16, 2013

In A Moment's Notice (Part 1)

When I last wrote, things were seemingly getting better; albeit slowly. Still, everything was being managed just fine and the infection appeared to be responding well to intravenous treatment of antibiotic. Then, I woke up (while still inpatient) with the chills; it was previously planned I would go home that day... prior to the events that were unfolding at a moment's notice. Suddenly, without even the slightest of warning, I was wandering the vast mountains of Antarctica in nothing but a tank top and shorts. There were not enough blankets in the world to contain the numbing cold that occupied every crevice of my body. My temperature shot up to just under 104. It seemed the infection had progressed, and there was certainly no question now that it had entered my bloodstream. The usual people were involved in treating me, including Dr. Fishman, Dr. Alomari, infectious diseases and the allergists.
The next few days were utter hell as we fought to control the infection. I couldn't get out of bed to use the bathroom; when I stood up, it felt as though I was in a wind-tunnel. Standing would simply not suffice, for I could not maintain balance of any sort. Bed pans were a staple throughout this time period. Even getting my shivering body up on the bed pan was a challenge in itself, especially given where the infection was located (my back thigh). My energy was tossed completely, and lifting my head was something that seemed to be a tremendous feat.

The only time I would start to feel any relief was when the oxicodone, morphine,and moltrin were administered and started to kick in. Eventually, though, my fever would progress back to its just under 104 state, and the unrelenting chills would return along with the dizziness, nausea, intense headache, all over achi-ness, etc. Not to mention the thigh infection itself... My body wasn't done surprising me yet, however. I woke up the following day with two huge clots, one in each arm. They as well were infected. I wish I was joking. No doctor had ever seen anything like it before and are still having difficulty grasping the concept of how this may have occurred.
When people see my leg, they think it is just my leg that is impacted by this lovely condition we call Klippel-Trenaunay Syndrome. Fair enough, but for those of us who know better, we know that is far from the truth. We know it can get into our bloodstream and cause sepsis, travel to other realms of the body and wreak utter havoc. We know better, unfortunately.


I returned home from the hospital yesterday afternoon and will be writing a lot more about my time during my ten day stay. My KTS family as always pulled through for me and were the most incredible support group I could have asked for. Never could I have imagined people with such endearing hearts and souls being there for me day and night, that which I am incredibly grateful for. Think of this as somewhat of an introductory post.

My KT loves, whether you are a family member of a patient or a patient yourself, may you be at peace right now. If you are not, may your pain soon subside. May you know you are not alone and have a bundle of people in your corner at all times, no matter how isolated you may feel from the outside world at any given moment.

Love always,
Arianna