Health
The italicized portions of this page were written two years ago, and luckily things have improved since then, though I still have the same health problems, the severity and frequency has decreased. I suspect this is due to a lower level of stress (no longer living with my father, and doing online school instead of attending public school and having to fight with the attendance people over whether I’m *truly* ill).
I have asthma (which has improved greatly), awful allergies, and I have a rare, genetic, form of rickets called “X Linked Dominant Vitamin D Resistant Rickets” (now totally in remission, my bones are healthy and perfect), but the most important condition is the chronic pain I experience due to what we (my family and I) suspect is Systemic Lupus.
I have not been officially diagnosed with Systemic Lupus, but my mother has it, my maternal uncle has it, and my maternal grandmother had it before she passed away from unrelated causes. I have many, many of the symptoms. My mother, who is a nurse, was first to think I have it, her rheumatologist agrees, and even my father has admitted I most likely have it. On average, it takes a person with lupus over 8 doctors and 11 years to be properly diagnosed, during this time, they’ll get a range of misdiagnoses, my favorite being “you’re making this up,” or “you’re crazy”. I don’t need a doctor to tell me what I already know, I have lupus. I’ve learned to be patient, and to enjoy every moment that I feel well, because tomorrow might be very different.
The chronic pain is not just aches and pains, or sore muscles after running a marathon, no it’s much worse.
Most people can walk a mile and maybe have a little bit of tired muscles afterwards. Not me. I can’t a block before I’m pretty much doomed to an episode of excruciating pain. What is an episode of excruciating pain? For most people, it can’t be understood, unless you’ve had it before. Imagine breaking your legs, or your arms, in about six different places, and trying to walk or use those legs and arms. Sounds uncomfortable, right? It’s worse than a fracture, because it can’t be seen, and it can’t be fixed. You stick me in an MRI or a CT scan or give me a couple X-Rays and I’ll look as normal as can be.
That might just be the hardest part, the invisibility factor. I don’t look sick. Most of the time I’m talented at hiding my discomfort, but I’m never without it. I don’t have the horrible episodes of excruciating pain every day, but I always have some. Getting out of bed is a struggle, when I get up from a chair I feel like a hunchback, it’s hard to straighten my back and it hurts a lot. If I hold a baby off and on for a couple of hours, or I walk around the mall for a while, I can predict the pain is going to come. These episodes last from about two hours to about two days, but usually in the middle, and it usually only ends with time and large amounts of pain killers–heavy duty knock out drugs, not advil or motrin, no thanks that’s for wusses.
My pain has ruined my life. Many people can say “Oh well you just have to shake it off,” or “You can’t let this control your life,” but they don’t know what it is like, they don’t know how you feel like a prisoner to this disease, they don’t know how it scares many friends away, and that doctors can be horrible, family members just ignorant, and daily activities just unbearable. I wish you could walk a day in my shoes, feel the pain in these legs, the sadness in my eyes and the heartache it’s created. Chronic pain is a monster, it takes you down and doesn’t want to let you go.