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