In A World Obsessed with Appearance, Food for Thought...

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

I have a Computer Back! New Video Message

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

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

Relentless Chronic Pain, Establishing Normalcy

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

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

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

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

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