You probably know someone who’s dealing with a chronic illness. While you likely supportive and understanding, you may not really know the intricacies and work that goes into getting through each day. Follow a day in my life here!
Let’s start at the beginning. I’m a hot mess, medically speaking. I’m the poster child for chronic illness, or at least I should be. It really started the moment I was born. I’m the lucky recipient of a port wine stain birthmark that covers roughly half my face. Port wine is a cutesy term to describe the fact that it looks like someone spilled a glass of wine on my face and never mopped it up. What it really is, is a collection of burst blood vessels and capillaries underneath my skin that will never go away, will never shrink, and for f**k’s sake, won’t be covered up with foundation.
Now, the birthmark in itself has always presented itself as a unique challenge. How could it not? I have a birthmark covering half of my face, people. As a child, I was lucky enough to go to school with kids who didn’t really care. But adults are another story — and they still are. I have not gone a day in my life without someone addressing me in some capacity about my face. I get everything to “what happened?” to “oh no!” to “what’s wrong with your face?” As a child and as a teenager, the constant comments were painful, but as an adult, I am mostly just annoyed. I want to be left alone, and I want to walk through Macy’s without being flagged down by someone at the Clinique counter promising they can “fix me.” Sorry, lady; I’ve tried every foundation at Sephora and off QVC. I had laser surgery on my face every summer between ages 3 and 13. It’s not happening.
The birthmark is a red herring for a much longer problem. I have an extremely rare disease called Sturge-Weber Syndrome (SWS), a neurological condition which occurs in roughly 1 in 50,000 to 1 in 100,000 births by current estimates. SWS is most easily diagnosed by a facial port wine stain that covers some or all of the eye. Not everyone who has a port wine stain has SWS, but everyone who has SWS has a port wine stain. SWS means that I cannot see out of my right eye, and that a chunk of the right side of my brain is calcified. It seems that those blood vessels burst in a few other places. The brain thing is completely benign; I’m not dying. It just sucks. Calcification means that hardened brain tissue causes migraines when it rubs against my skull. I’ve developed epilepsy because of what it’s done to my occipital lobe. Every day’s a f*cking surprise.
On top of this, I have unrelated Type 1 diabetes. Or hell, it could be related at this point; who knows. Bodies make no sense. My life is a never ending struggle with doctors and appointments, trying to determine what medicine works best, and what delicate balance needs to be struck to keep everything in check at once. A particularly annoying example: nuts trigger seizures. If I can’t eat because everything has nuts in it, then my blood sugar goes low. Extremely low blood sugar causes seizures. We’re back to square one. I don’t mean to complain, but to simply give insight into the bullsh*t those you love who are also chronically ill have to deal with every day. This is a look into what I do every day behind the scenes:
6:00am: Wake up. Get out of bed and then immediately lie back down to avoid barfing because I forgot to take my anticonvulsants last night. I am currently taking four of them. Get up again to take them, drink a ton of water, and get ready for work.
9:00am: At work. Check my blood sugar and give myself insulin after eating breakfast when I arrived to work earlier. I check my blood sugar and give myself insulin every time I eat.
9:05am: My insulin pump begins screeching because the previous dose put the reservoir below 10 units. It’s easily shut off, but every time I hear that screech, especially in the middle of the night, I fume. Shake it off.
11:00am: We get treats at the office for a coworker’s birthday, and it’s something covered in sugar. Fine by me. People have this misconception with Type 1 diabetes that eating anything with sugar will kill you. I had someone knock a cookie out of my hand in high school once. It’s only if the diabetic person doesn’t take any insulin when they’re eating sugar that it becomes dangerous. Things were different a couple decades ago.
When I was a kid, insulin had to be taken 45 minutes before eating something to be effective, so there was no such thing has having a surprise treat. It was harder to maintain control over blood sugar levels. Now, fast-acting insulin allows diabetics (of either type) to eat fairly normally. I check my blood sugar again and give myself insulin.
12:00pm: My insulin pump starts screeching again because besides the reservoir being low, it’s now almost time to change it out. I have to do this every 2.5 days. However, thanks to the blessing that’s online forums, I learned that there’s about six to eight hours leeway on expiration. This is future Sam’s problem. It’s a pain in the butt to keep changing it out, but it’s night and day from my old routine. By using an insulin pump, I give myself around 400 injections every year. Otherwise, I would be taking six injections of insulin every day — give or take 2200 a year depending on the circumstances. At this point in my life, being 27 and diagnosed at age two, I have given myself roughly 55,000 injections. I have no idea how many times I’ve pricked my fingers. It’s probably more.
3:00pm: I’m feeling sort of light-headed and realize I’ve been spacing out for a few seconds, maybe minutes; there’s an entire paragraph of text added to my article and I don’t remember writing it. That’s a seizure. I have complex partial seizures from the occipital lobe, meaning I don’t fall on the floor and convulse. I zone out briefly, and my hands or legs shake. Sometimes, seizures present themselves as excruciating migraines. That’s thankfully been controlled by medicine. Otherwise I wouldn’t be able to get out of bed. Complex partial are small and well-controlled. I feel gross, but I have no other problems afterward.
4:00pm: My insulin pump emits a huge, never-ending screech while I’m in the middle of a very quiet newsroom. The reservoir emptied, or it finally expired, or both. I’m too busy to change it, and bargain that I won’t be in any certain danger until I can leave for the night. I feel gross, but it’s my own fault. I just wish it wasn’t something I even needed to worry about. So it goes.
Things are normal for the rest of the night, when I go home, change the pump, check my blood sugar again, give more insulin, and take my seizure medication. The eye I can’t see out of is starting to hurt again, so I make a note to schedule an ophthalmologist appointment. Next week I go to the neurologist for a yearly checkup and MRI to make sure nothing’s changed.
My life is ruled by what I have to complete and overcome each day medically, and always will be. It’s not sad; it’s just a fact that I reckoned with a long time ago. And while I’ve learned to juggle everything with prowess, there are days where I sit down and wonder when I’m going to get a break. I’m not. I never will. I move forward instead.
HollywoodLifers, are you struggling with a chronic illness? Let us know!