“How are you?” This is probably my most dreaded question. After five years of living with lupus, I really don’t have a good answer. Not one that is expected of me anyways. I really just want to say the truth and answer “absolutely shitty” and be done with it. After all, how does one …
Our whole life is guided by expectations. Whether concretely layed out or not, we all have some vague idea of what we want to do, who we want to be with, what our family might look like, what our vacation will turn out to be, and so on. Our expectations are adjusted on a daily …
Before I got sick at the age of 33, I didn’t even have a steady primary doctor. Five years later, I now have a large collection of doctors and specialists that I regularly see. Yet, I still struggle with the question of whether I am seeing the right one. Over the years, I have developed …
I’m so over my illnesses. Unfortunately, they seem to love me and are holding on tight, causing me to stumble through my days, letting me just survive. It frustrates me so much! And frustration is evil, often inviting other friends along for the ride. Hello anger, anxiety and depression! I usually find that “frustration” is …
September has been an exceptionally hard month mentally and digging myself out of the dark place I fell into took extraordinary mental agility. It feels like depression is an inevitable part of my battle. It is hard not to get depressed about being sick everyday, being in pain everyday, being in fatigue everyday, not being …
It is too hard to get up from bed because I have been tossing and turning all night from the pain, but I do. It is too hard to walk because my muscles and joints are very stiff, but I do. It is too hard to sit down on the toilet because I feel dizzy, …
While lupus is an invisible illness, sometimes the treatment of it can cause visible marks on my body. One of the go-to drugs for treatment of lupus is a glucocorticoid named prednisone, which is a powerful anti inflammatory drug. It’s a double edged sword, however, fighting against lupus but also harming my body. While cortisol …
I started my day at the U.S.Open having my spirits deflated by an ignorant employee who was waiting for the elevator. These elevators are reserved for employees and handicapped visitors to the stadium, and upon seeing me, he told me that I can’t ride this elevator because I am not handicapped. This is how this …
I take 9 different types of medication daily. Of the nine, I consider one of them to be a lifesaving drug, a heavy hitter, both in efficacy and side effects. It is azathiopren (Imuran), an immunosuppressant. Immunosuppressants are a type of medicine that suppress your immune system. In the last four years, I have …
When you are sick everyday, healing must happen everyday. As someone with a chronic illness, I do not follow the linear path of sickness, recovery and healing. Like Groundhog Day, I relive my illness every morning when I get up. So how can you recover and heal when you are constantly sick? I have learned …
Lupieliving 