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

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

“So with your metabolic disorder, you can’t really workout right?” Wrong.

My doctor has told me it is crucial to keep my body toned and in shape and that doing so will actually make it harder for those muscles to break down. It makes complete sense and I truly enjoy a good work out. However, it can be difficult, so soon after experiencing such intense muscle pain to jump back into straining those muscles. Despite my fear, I do try to go back to working out soon after I feel I’m ready. I take it slow at first, something like going for a long walk and then slowly notch up my regiment, getting back to the gym. It is one of my greatest fears that as I age my body will start to grow weak, accelerated by the effects of VLCAD. But instead of succumbing to my fear and letting it passively happen to me, I use the fear to propel me into action. That has been my (attempted) tagline to living with a chronic disorder-“don’t let it beat you, spend every day beating it!” I have found rather than a hindrance many days, it has given my life great purpose.
For most people “feeling the pain” is part of a good workout. For me, “feeling the pain” is not so simple and is usually an indicator of a larger problem. It has taken me many years to draw the line between “VLCAD sore” and “exercise sore.” Sometimes that line is nearly impossible to draw. Some days I just have to stop trying to draw the line and leave it to rest, hydration and a little faith that tomorrow will be a better, pain-free day. In my personal experience, “exercise sore” often feels more like the muscles are stretched and is often concentrated in my legs., arms or abs (depending on what kind of workout I did). “VLCAD sore” feels like an intense pressure on my muscles and includes pain in my neck, shoulders, back, and joints (often pain in my wrists or ankles can be an indicator). (Please note: This is my personal experience. These “symptoms” will not be the same for every person with VLCAD or another FOD. Please consult your doctor.) Separating these two type of pain have allowed me to realized that I can work out and that sometimes the pain I am feeling is “normal.” I feel like there is a misconception that people with VLCAD or other FODs cannot work out, ever. It is actually quite the opposite-we, even more so than others, need to make a conscious effort to keep our bodies in shape. However, it is a delicate balance and like many things in life, is all about moderation.
Just the other day I was at the doctor’s and my nurse asked “So with your metabolic disorder, you can’t really workout right?” A common question. “Oh ya” I respond, “I workout!” It may just be my personality, but when someone tells me I can’t do something I want to do it even more. There is nothing that makes me feel like I am kicking VLCAD’s butt more than exercising! #VLCADprobs

Fighting Fear

I just got over a flare-up, which is always draining, not only physically but emotionally. Only the necessities of life could be accomplished. I went to work and then came home, that was it. For me, as an action-oriented person, who loves going, going, going, that was miserable. Everything else in my life had to cease for a little while. I am slowly trying to work back into adding more to my daily routine again. Every time, it almost seems like starting from scratch. But every time, it gets a little easier. The only part that is not easy is the fear that is associated with doing too much, pushing myself a little too far and back into illness. But as other with chronic disorders know, you cannot let fear dictate your life. At a certain point, you just have to trust yourself and your own judgement. Trust the instincts that have gotten you this far. It is time to get back in the game. So to all my fellow VLCADers, and those suffering from other chronic disorders, be cautious, but be courageous! You’ve got this. #vlcadprobs

A Long Journey to Finding True Friends

So this weekend it happened again…. Every time I forget how much it hurts to have plans with people you care about, promises made, excitement level high, and then illness interrupts. I often go long bouts of time feeling great, living in a world of bliss, as if my illness does not exist. But as soon as that happens, as soon as  I forget for too long, it comes back and swiftly reminds me.

I had set up plans for one of my good friends from back home to come visit me at my new apartment.  I was going to show her around the city and just have a fun girls weekend. Friday night,  I get home from work and she arrives. We walk around the park and make some delicious pizza. All is going well. Right before I go to sleep, I start feeling off, but I brush it off and blame in on exhaustion. “It will all be better in the morning,” I think.

Well..unfortunately. It was not better in the morning, but only worse. A younger version of myself would have tried to push through it, walking miles through Boston and landing myself in the hospital. But  I am glad I have grown up enough and starting caring about my health enough to know I could not do that. That would only end in a greater heartbreak and much more serious consequences.

So it is 6 am on Saturday morning. I am sitting in my bathroom, trying not to wake my friend, crying, beating myself up over the fact that my friend had come all the way to Boston to see me and do some fun activities together, now due to the flare-up I was experiencing, it was not going to happen. I convinced myself she would be upset and disappointed. I know I was. Feelings of high school were looming- the  scary feeling that if I stood-up my friends up too many times, too many missed dances, birthday parties, or other important events, that I would slowly, but surely lose their friendship.

However, as I said, I have learned since then. And my feelings on that subject back then were always misled. Had I “lost” friendships? Maybe a slim few. But what I realized is those people that I “lost” were not really friends. I had gained many more friendships, true friendships. Being a true friend, I have learned, means being there for a person in their time of need, at their sometimes, lowest and darkest times. My true friends are the ones who in the moments of not only physical, but emotional pain, were there–to hand me a bottle of Gatorade, or make sure I had the notes from class. To ease that pain, not increase the grief.

I pulled myself together and walked into the bedroom where my friend was wide awake, clearly sensing something was wrong. I had to be strong and just explain to her that I did not feel well and that we could not go on our planned adventures. The first few words are always the hardest, whether it is your friends, your partner, your boss, etc. Hard conversations are never fun, but there is no avoiding them, they have to be had.

Well, even though this weekend did not turn out as expected (as many times VLCAD throws me a loop), I realized I had found a true friend. She was completely understanding. She asked if she could get me anything, staying around for a while, clearly concerned for my well-being. A true friend can sometimes feel like a hard thing to find, but  is truly a beautiful thing once it is found.

Despite chronic illnesses often interrupting our daily routines, aspirations, and relationships, I have found that they also provide a new-found respect for those important aspects in life. VLCAD has often been what has made me stop to those appreciate those things, when otherwise I probably would have just kept going.#vlcadprobs

 

Welcome!

With everyone else falling into the blogging trend, I thought it would be useful to start a blog about living with a chronic disorder. As anyone who lives with a chronic disorder knows, life is always a little more complicated. The idea came about one day when I was ranting to my boyfriend “I am out of yogurt to put my medicine in. Apple sauce it is…ugh it just doesn’t stir in right.” My boyfriend responds “#VLCADprobs.” We both started laughing hysterically and ever since then it has been a thing we do. It is a small joke that helps make living with a chronic disorder a little less scary and a little more bearable.

Recently, I have become part of many support groups on Facebook and the likes, which has really helped me realize I am not alone. I hope this blog will be just another resource to help us all stay connected and support each other. Whether it is VLCAD, another fatty acid oxidation disorder or any other chronic disorder, as I always tell myself, it is important to remember, it is a challenge and it will never go away BUT it can be managed. #VLCADprobs in no way is suppose to make fun of, or downplay the seriousness of chronic conditions, but as I have found laughter is the greatest medicine.#vlcadprobs