The Ugly Truth

I recall the days I used to sit huddled in the corner of my home bathroom crying my eyes out – it wasn't because I was in pain from my KTS, either. Truth is, at that time, I was in a great deal of pain from my KTS, but that was not the main issue on my mind. When I was home from the hospital and in high-school, walking down the hallway in-between classes and using flights of stares was enough to evoke a flood of pain. Yet, that wasn't all too significant to me... what really mattered to me, as I touched upon in previous posts, was how I perceived the way in which I looked on the outside. I hated my appearance so much, that at times it was all in which I could focus on within my head... The only real distraction, I suppose, was doing my schoolwork in isolation. Perhaps that is why I got such remarkable grades, especially for a person who was forced to miss school as often as I was. Yet, whenever I found myself in a throng of people, my head went into a complete tizzy. “Why can't I have hair like that girl? Her nose is so much better than mine. I'll never be able to prance around in a cute skirt like that. Why couldn't my eyes be a striking blue or at least hazel? I'll never have any of that. No one will ever want me. I'll never have that perfect life.”

I guess I should note that at this time, not only was my leg expanding in size tremendously (compared to how it was in size when I was a child) but that I had also developed blebs in my genital area (more toward the inside buttock). These areas caused me so much pain on a daily basis, that much I can tell you. When placed under water, they would sting immensely. When I had pants on, the material would rub up against them and cause them to get irritated. I still get these blebs periodically, and have a surgery to remove them once they are ingrown about every two years. They are terribly uncomfortable, and for a while I carried around so much shame associated with these tender areas. I felt like I was not worthy enough for any guy to ever want to be with me...

So, as I touched upon in the last post, I felt the need to overcompensate in regards to other aspects of my appearance. I hated my eye color, so I changed that with the ever so fake looking colored contacts. And, by the way, this is not to demean anyone who wears them! Most of the time, though, I just chose colors that looked awfully unnatural on me. I died my hair probably every color in the book. The one good thing, I will say though, is I never had an eating disorder or worried about my weight. However, in terms of all other revenues related to physical appearance, I was constantly trying to achieve perfection. Still, I wasn't satisfied no matter what lengths I went to to altar my physical appearance. I didn't understand that there was more to this obsession...

One time, I remember getting all dolled-up for an event at my Grandmother's house. I had been looking forward to going, as I always enjoy time with my family immensely. Yet, at one point, I looked in the mirror and thought there was no way I could be seen like this. I remember I was dressed in a gray sweater, had my blue colored-contacts in, and was sporting a full face of makeup. Still, I felt so incredibly...ugly. I felt ashamed of myself, and like I needed to come up with a plan to be “prettier,” so to speak.

I lied to my parents and told them my leg was hurting and that I really just was not feeling well...they had no idea what was going on at the time in regards to how atrocious I felt inside. Nor could they or anyone else, it was perhaps my best kept secret back then. I wish I could say my Grandmother's house was the only time in which I did that, but it was far from it. I used to shower four times a day, not only because I was petrified of bacteria and constantly feeling dirty(stemming from my overt OCD, undiagnosed at that time), but because I also thought I was washing away some of the ugliness that occupied my body. Eventually, all of this internal frustration turned to utter shame and I was not forced to acknowledge these issues until I had a full-on breakdown at the age of 18 in which I could not stop hysterically crying for several weeks period prior to an antidepressant.

Now, I still struggle with this stuff to degree. As I wrote in my last post, the mild acne onset from the Sirolimus was enough to merely cripple me emotionally. Yet, here I am, still dealing. Now a days, as a way of practicing exposure therapy, I run out here and there without makeup. I try to take pictures of myself without makeup, where I have my natural light brown hair and clear-colored contact lenses. My natural beauty is something I try to cherish, and perhaps more importantly I realize it does not dictate the rest of my life.

So, who wants to see a picture of me in a far from perfect state? I took this upon waking up this afternoon, and I am not wearing any makeup and clearly my hair is, well, you can see for yourself...hahaha

I consider small things like this to be exposure therapy.

Until the next post, Arianna

The Sirolimus Diaries Update # 3 "The onset of mild Acne"

This is my third installment of this series. To see the series in its entirety thus far, please click on the labeled tab “sirolimus” to the right.

Since I was around 13 or so, I was always incredibly self-conscious of how I looked on the outside. I think that I viewed my leg as somewhat of a flaw, and felt that I needed to compensate for that flaw for making the rest of myself look “meticulous”. I began wearing makeup, dressing in the “appropriate” socially accepted clothes, and spending ridiculous amounts of time straightening my hair. Now, some of you reading this may think “well, that's not so atypical behavior for a 13 year old girl...” and it wasn't, really. What is, however, was the significance in which I attached to these habits. A stray hair out of place made me feel as though I was “ugly” as sin. In psychology, there is something called “the spotlight effect.” The spotlight effect is essentially when you feel as though all eyes are on you, when in reality they are not. We feel as though our lives are placed under a giant microscope, and that everyone is picking apart every aspect of our lives. This term has definitely been applicable to me for the past 10 years or so.

Anyway, I was blessed to have decent skin that hardly ever broke out...I can probably count the number of times in which I have had a pimple in my entire life on my one hand. I was pretty fortunate, and I watched my older sister struggle with moderate to severe acne for an array of years. To this day, she still struggles and sees various doctors and takes medications to help keep it under control. Her plight was not one in which I could even fathom having myself... my leg was one thing, but my face was another. I get how ridiculously shallow that sounds, I promise you I do. And as far as my sister is concerned, she is a stunning girl inside and out...with or without the acne. Also, I admire her strength for she faced the world so bravely despite her condition. With my leg, I could always cover it up when I wanted to, but clearly one does not have that luxury with their face...

How does this have to do anything with sirolimus, you may ask? Well, a couple of weeks ago I started to break out on my face in a way in which I never had before. For someone like me, it was absolutely terrifying. It was as though my overall appearance was being attacked, and it drove me into a frenzy. Now, when I am rational I can see this problem for what it truly is: a few blemishes scattered throughout my face. There are bigger things in life, much bigger things. There are people with life-threatening issues at this very moment, people who have just lost a loved one. Essentially, people who have much more significant issues than a mere few blemishes on their face.

However, there is a rather irrational side of me when it comes to my appearance, and that is what has mostly shone through these past couple of weeks. Again, I believe it stems from my own insecurities in regards to my leg and feeling the need to overcompensate because of it...

I went to see Dr. Trenor and his lovely nurse Jenn a few days back and had them look at my skin. Even with my layer of foundation on, the bumps underneath it were apparent. I felt so defeated....I wanted to crawl into a cave and never come out again. I felt so insecure, and as though I was pretty much worthless... How horrific, right? If this were anyone else, I would never tell them to think in such a seemingly ludicrous manner...I would tell them that their inside is what dictates their beauty. Yet, when it comes to myself, I am so fragile inside and insecure that I am unable to do that (at current) which saddens me greatly. Anyway, the mild acne is not something that will go away on its own. It is a side effect of the sirolimus, and that is why Dr. Trenor and his nurse have been so incredibly persistent in helping me to get an appointment with dermatology. I have not yet got a call from the dermatology department, but I expect to be getting one any day now. In regards to the mild acne (in which I also have on my chest and back) Dr Trenor and Jenn have been so incredibly understanding of my emotions... For now, it is a side effect in which I will have to deal with until the dermatologists get involved and help correct it.

As far as other side effects are concerned, there is not many to be spoken of at this point in time... I am beginning to notice a little less rectal bleeding however the change has not persisted long enough that I can say this will be a permanent reduction attributed to the Sirolimus. I am sleeping a great deal, and seem to be coughing and sneezing (along with having watery eyes) more than ever before. I have never been susceptible to allergies, but perhaps I am now due to the medication.

I take the Sirolimus twice a day and the bacterium (to prevent pneumonia from the weakening of the immune system) three days a week.

Below is a picture of some "blebs" we took while at the appointment with Dr. Trenor. These are on my thigh and therefore can make sitting rather uncomfortable. Also, one of them leaks out lymph fluid quite often which always makes me paranoid in regards to infection.

As always, please feel free to leave any comments and questions below; if you are not comfortable leaving them here, feel free to send me a FB message on my private facebook. I can be found under the name of Arianna Helena.

Until the next blog post,

Arianna

Update on Mental Health Petition for BCH

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

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

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

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

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

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

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

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

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

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

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

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

More soon, Arianna