Monthly Archives: October 2014

Embracing My Inner Yogurt Girl

This month, I attended my boyfriend’s cousin’s wedding in North Carolina. It was a whole family affair and really, the first time I had spent any significant amount of time with my boyfriend’s family. His immediate family knows sparsely about my disorder, but his extended family, most likely does not.

The first night we arrive, another cousin picked us up from the airport. We went straight to the hotel and then were supposed to meet the family at the venue for the rehearsal dinner. As many of you know who travel with medication, bringing it through security can be a nightmare, but a necessary nightmare. At least in my case, I am not taking a chance of losing my medicine with my luggage. As a participant in the Triheptanoin study, I cannot just go to the local pharmacy or food store and pick some up. I travel with my protocol in hand, ready to explain my unique situation to TSA. To ease my travel, I do not carry yogurt with me, which is another necessary component to consuming my medication. That would be whole other scenario to have to explain and have found the less talking you have to do to TSA, the better.

However, since I do not travel with the yogurt, I have to get it wherever my travels take me (or sometimes I have to settle for a less desirable alternative). Through my searches in several areas, I have developed a keen sense for where to find convenience stores that will carry yogurt or something close to it (I can even tell by their size now!)

So we are walking to the venue of the rehearsal dinner and my boyfriend exclaims “We have to find a convenience store for Tasia! She needs yogurt.” No further explanation. Of course to my boyfriend, it is just like second nature now and he does not think anything of odd statements like that. It is just our life; we often treat it like an adventure and that is why I love him dearly. However, for his cousin, she was clearly confused–understandably. Only a few years ago, I would have been embarrassed. I would have been stressing about how “uncool” it seemed. I would have tried to hide my medication and my disorder, trying to pretend like it did not exist. More recently, I have developed a greater confidence in my disorder and myself as a person. I am more comfortable explaining it (or attempting to) or in some cases, just leaving it unexplained. I no longer view it as “uncool,” but rather as responsible. I am proud of the fact that I have learned to be resourceful and take care for myself. The people who cannot understand that are not worth the effort.
Since I wanted everyone to be focused on the wedding festivities (and not in a state of confusion over my metabolic processes) I simply said “It for my medication. Go ahead-we will meet you at the restaurant!” and headed into the store with my boyfriend for the yogurt search. I get a lot of looks- looks from the cashier as to why I was buying one single Naked at 9pm at night, looks when I take out my small vials that hold my medication in public, etc. You get used to the looks, because looks start to hurt a lot less than sickness. Instead of letting people’s judgment make me sad, it makes me proud. Proud I have gotten to the point where I manage my disorder, it does not manage me. Proud to be a person who does not feel like I need to hide who are truly am, no matter the situation.

As the weekend went on, I had to stop by the same convenience store at all hours of the day and night to get yogurts and smoothies to put my medicine, carrying it about from one wedding event to the next. I had to bring a Naked into a bar at one point-a bar! It was late, time to take my medicine and I happened to ben i a bar, celebrating—and well, that’s my life. It is by no means picture-perfect, but that is kind of boring anyways. I am sure there were many people at the wedding festivities thinking “That kid’s girlfriend is so weird. Why is she always carrying around yogurt?” I would rather be the weird yogurt girl than someone who hides behind a façade. Authenticity and confidence promote happiness-true, inner happiness.And if that means being the yogurt girl-so be it. #VLCADprobs

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Empathy-Everyone has their battle

Recently, I went to a funeral. Never a fun experience. However, this funeral like many I have been to, were funerals of people who I knew, but only distantly. I am not an emotional person by nature. Having a chronic disorder, it has always been a struggle between becoming emotionally numb and being an emotional basketcase. Doctors have often told me emotional outbreaks like crying cause stress and therefore, can cause a flare up (or exacerbate one). When you feel sick, you often feel emotional, but when those emotions might make you feel sicker, you learn to suppress them.

However, despite my lack of emotion when it comes to personal problems, at this funeral, I bawled. I could hardly contain myself. This often happens-I will start tearing up watching a sad story on the news about a person I do not even know. It is that moment when I realize another person is suffering that it really hits me. I want more than anything in the world to take them away from the pain.

Now, I am not saying any of this to prove how great of a person I am. I am a good person, but I have my fair share of imperfections like everyone. For example, I have anger problems that I struggle with every day. It is a part of myself that I do not necessarily like and am working to change. The reason I am writing about this today is it was a moment of realization for me. I separate my own problems from myself to the extent that I do not feel emotional, but with others, I take their feelings and hold them close to my heart. Their emotions become my emotions.

I may do it as a coping mechanism–my own emotions may be too scary so I use others to fill the void. Regardless of the reason, I think there is a good result. Through my disorder, I have become a more empathetic person. Empathy was once explained to me as distinctly different from sympathy. Sympathy is feeling bad for a person. The term “feeling bad” puts the person below yourself, looking down on them. Empathy is putting yourself in the person’s shoes, feeling connected with them on an equal level. If there is one thing I can relate to, it is pain, whether physical or emotional. I have stretched that ability to relate throughout my life into my relationships, my career, my lifestyle and my morals. I think this ability to empathize has made my life significantly better and allowed me to dig myself out of a place of self-pity.

Whether you live with a chronic disorder or are the parent of a child with one, embrace that ability to be empathetic. We need more empathetic people in the world. Let it be one of the characteristics you learn to love about yourself because as we all know, many days, we struggle to find those. Spread happiness and kindness because you have a special ability to do so. Everyone has their story; for those of us who struggle from an FOD or another chronic disorder, we know how complex and difficult that story can be under the sometimes deceiving exterior.

“Be kind, for everyone you meet is fighting a hard battle.” –Ian Maclaren