Current Struggles

I have spent a great deal of time focusing on the physical/medical issues that I have suffered recently. I am back on steroids (ugh), and although they make me feel a bit better (decreased pain, increased energy), they also bring about various unpleasant side effects. One of the main side effects that has bothered me is weight gain. I was always quite thin in high school and college, weighing approximately 126 lbs. It is very difficult to state my weight in a public forum such as this, but I believe the honesty will help me cope. I now weigh 211 lbs due to the steroids. For the first few years that I was on them, I gained a little bit of much needed weight. However, the weight kept on coming. It is one of the most frustrating things that I have to deal with aside from the chronic illness. Some may say it is just temporary, don't worry about it. This is true. But it always seems that as soon as I am off the steroids, and lose like 30 lbs, I have to go back on and gain it all back. My face gets super swollen, which is called Cushings, or "Moon Face." The fat gets redistributed on your body, so it goes to your neck, abdomen, and face. It's so awful. I look in the mirror and see a stranger peering back at me. It is extremely difficult to go from being thin and feeling self confident and attractive, to feeling fat, disgusting, and unattractive. I feel like no one would want to look at me let alone be with me. I make a conscious effort to accept myself regardless of my weight....This is a difficult task.

We all know the saying that we are our own worst critics. This is so true for me. I am, and have always been, quite the perfectionist. It is just one of those characteristics that has been embedded in me since college. I had to get straight A's, had to do perfectly on everything I attempted. Had to always look good, etc. I think the hardest part is not having any control over the effects that the medications and this disease have on me. To feel so out of control is a terrifying thing. You have to be ready at all times for anything. Stress has an elevated meaning for me than for those who are considered healthy. There is always physical an emotional stressors and at times they are exacerbated during periods of crisis, which occur frequently.

As I was saying, I am typically dealing with physical or medical issues. Although on steroids they don't completely go away, I feel better enough to be able increase my performance of activities. I clean, go out more, and am just more active in general. But it also raises issues within myself about my identity because I am not working. When I am always sick and feeling awful, I don't care that I can't work. But when I am feeling better, it is horrible to have nothing to do. I need to feel productive. I want to accomplish things. I want to continue to help people. I want to advance my career....the career that has been sitting on the back burner for the past four years. When I am on steroids and feeling better for days at a time, it hits me emotionally. I start getting depressed because I constantly compare myself to who I used to be. I consider this the "before and after" dilemma. It's so hard not to think about who I was prior to becoming ill, because I was happy, social, successful, confident, active, busy, etc. To go from that to literally being in bed most of the time or just in the house alone is a dramatic shift in everyday functioning. Try and picture this happening to you. Four years of it....The longer it persists, the harder it is to cope with.

I need to remain positive. In spite of all the negative perspectives it would be easy to adopt, I need to be mindful of the positive attitude within me, even if it is small at times. It is easy for negativity to spiral downward.....Rather, I need to take whatever positive energy I have and focus on it, allowing it to gain momentum. If anyone has any ideas on how to continue to do this in the midst of constant struggles, please do let me know. I have mentioned before that I don't have control over what happens to me in life, but I do have a say in how I respond to these events. We always have a choice, even if those choices don't seem like they are what we want them to be. I can't control that I am sick. What I can control is how I react to the illness and how I move forward. I have to beat this disease. I have to figure out how to not let it define me...because for the past few years, that's all that has defined me. There isn't a day, an hour that goes by that I am not thinking about Behcet's and what it has done to me. It has sucked away the old me and replaced it with someone that is nearly unrecognizable. I used to think that my goal was to get the old me back. I have since revised this goal. Rather than getting the old me back, I have to accept the current me. I need to accept myself wherever I am in life. I need to work on being the best me I can be. If I focus on the past and who I used to be, I am potentially losing out on moments in life that can be meaningful. I guess I can also think of it this way....There is no old me or new me. There is just "me." All of it is me. The me that was, the me that is. We are always ever changing and evolving. How do we merge the different aspects of ourselves to create a whole rather than individual parts of ourselves? I guess this is something we always strive to achieve.