I smile a lot. But I’m still sick. I’m sarcastic and use humor to navigate the highs and lows and everywhere in between. But I still suffer from rare disease. Sometimes I look just fine. But I’m still disabled. Looks can be deceiving and so can illness and disability. It’s an important idea to remember. Read More →
Okay, that title may be a little dramatic but, let me tell you, as a person that has always repeated the mantra: “failure to plan is planning to fail.” I like organization, I’ve always been a joiner, and, I like to control my own schedule. So, the learning curve on chronic illness has been brutal. Now, don’t get me wrong, with chronic illness you do a lot of planning, but it is mostly contingency planning (what to do when something goes wrong, i.e. your body does not cooperate, the venue is not accessible) rather than being able to plan out your day to day schedule,Read More →
Profiles in Pain is a periodic guest column on the Tumor Blues Blog that highlights how individuals deal with pain and how it impacts the course of their lives. I first connected with Mia on Twitter of all places. We both had come to find other chronic illness sufferers who could understand the unique circumstances of living a life in pain (and do so in 140 characters or less!) and now, more than a year later, a friendship has blossomed. Mia is kind, funny and an exceptionally talented artist. She has a unique way of capturing what it is to be chronically ill and she’s takenRead More →
One pill makes you larger And one pill makes you small And the ones that mother gives you Don’t do anything at all Go ask Alice, when she’s ten feet tall –White Rabbit/Jefferson Airplane Some days being chronically ill is a merely a challenge, other days it’s a downright circus. Recently, life seems much more circus than challenge. Let’s start with the pills. On a good day, my pills are an absolute nightmare. On a bad day, well, hopefully there will be far less of them in the future (the terrible example here being the time I spoke to the cable company and completely blocked it from my memory.Read More →
Suddenly Phobic I have had three brain surgeries, so you would think I would be comfortable with MRIs. And up until a few years ago, you would have been right. Perhaps comfortable is the wrong word, I have always been a little claustrophobic, but that was easily remedied with some anti-anxiety medication. It has been almost 20 years since my initial diagnoses of Cushing’s Disease, caused by a pituitary tumor located near the base of my brain, and I have had many, many MRIs. In fact, my mother and I have joked about how the cheaper option may have been to buy an MRI machineRead More →
Or, “Sorry you’re sick, you’re just not sick enough.” I was having a relatively good day, and by that I mean I made it downstairs to the couch. That all changed when the mail came. It seems I have been denied for disability again. This is my second application and my first appeal. That’s three denials for those keeping score at home.* According to the Social Security Administration I am not sick enough to not have full-time employment. This may prove problematic because, as I mentioned above, my good days lately mean I can make it from my bed to my couch. Perhaps it isRead More →
I suppose I got too comfortable and maybe that compounded the problem. Not physically comfortable because that hasn’t happened in recent memory, but more comfortable with the vastness that begins to envelop you when you tangle with the medical-bureaucratic-beast that is the healthcare system when you have chronic illness(es). I have a cadre of kind, knowledgeable doctors that I rely on and trust to guide me. But sometimes we must go beyond those boundaries, whether for additional comprehensive treatment or for situations that require emergency intervention. So that brings us to yesterday, or last week for sake of a more complete picture. I have beenRead More →
Yesterday, people from all over the United States (and even in countries across the world) got together to march for equality. Marchers were there for many different reasons, equal rights, inclusion, protecting and increasing civil liberties and more. I am no stranger to marches, having walked different progressive causes during the last few decades. But circumstances have changed and I am no longer able to physically pound my feet on the concrete and chant along with the masses to fight for our collective rights. But the activist in me will not be silenced. So I will fight. For equality. For inclusion. For saving health care soRead More →
I’m aware that I’m rare After a while you get used to it. The barely suppressed delight on the face of the newly minted intern or medical student who has only read about your condition and now sees an actual specimen in the wild. I’ve become accustomed to groups of doctors listening in on exams while steadfastly taking notes as my history is rattled off once again. My way of dealing with it is through encouragement. Hey, here I am with all of my textbook symptoms, look and learn about the seemingly unconnected set of symptoms that all add up to make-up my rare disease. AfterRead More →
