When the Sun's a Black Hole

What no one tells you, when you finally get a diagnosis of a weird disorder, is that things like Chiari don’t like to play alone. “Yaaaaay!” You think to yourself, when the doctor gives you the grim news that you need brain surgery. Sure, that’s fucked up, but it means that you have hope of feeling better; and more, it means that you actually have been feeling like the shit you’ve been describing for months (or years) prior, and someone finally believes you. More, it means that the doctor believes you. He can point to it on an MRI, a tangible result. But, he neglects to tell you that the thing that you have, it’s just the beginning.

I learned this week that meds that I get to take forever, or maybe not (who the hell knows, anymore?) have made me allergic to the sun. I remember seeing a documentary once, when I was a kid, about a child whose mother had to keep her kid inside, twenty-four hours a day, shades drawn, because even a sliver of light would cause him to blister and peel, screeching in agony. Is this my future? I hope not! And, it’s likely not.

The other day, I was outside painting (working on a large sign for my boy, for Autism Awareness day—which he didn’t appreciate enough, but I’m not complaining—okay, I am), and noticed that my arms were itchy, and covered in red bumps. Since it was especially on my hands, I have enjoyed the three days since, trying to hide my hands from the public, so they don’t think I have a communicable disease, like the measles, when I do things, like complete a credit card transaction. Nothing says, “I’m not a leper,” like cramming your thumbs into the sleeves of your shirt, on an 80-degree day, and pretending it’s normal.

This is a damn big sign, right? Lots of time outside painting, lots of work, and it got over 150 nails with lights threaded through it too. He does actually love it. I just require a ton of praise for anything I do. I'm hard to please.

This is a damn big sign, right? Lots of time outside painting, lots of work, and it got over 150 nails with lights threaded through it too. He does actually love it. I just require a ton of praise for anything I do. I'm hard to please.

I’m really fair-skinned, and I’m always the first to burn. I don’t tan, I burn. Apparently, I’m Irish? I’m not even really sure. I’m one of those American mutt-breeds, with no real link to ancestry, except that I’m 100% positive that I’m Dutch. Do the Dutch burn?

Anyway, I’m careful to use sunblock; I cover up with lots of clothing, and even wear a hat. Yet, it was so warm, I took off my paint shirt, and worked out there in just a t-shirt, working away. In almost no time, I was covered in welts, not just the telltale ache of a burn.

I look forward to wearing flattering SPF50 or higher sun protective clothing. You know the type, right? Either flowing sundresses that look like they belong on The Golden Girls (don’t get me wrong, I love the GGs), or camp shirts that make me look like a park ranger (again, not that I don’t like park rangers, I’m just not one). I’ve acquiesced to a floppy hat, but I feel like this is a bridge too far. We’re going to Universal Studios this week, to celebrate the boy’s birthday, and I was literally browsing Amazon, trying to figure out ways to accessorize an SPF potato sack shirt with a belt. Help me.

A few days later though, the meds became too much. The rash was growing, instead of receding, and I’d not been in the sun any additional time. Plus, I was feeling terrible. I kept repeating how I just couldn’t put my finger on what felt terrible, just that I felt so awful. If you’d have asked, I’d have said that even my fingernails felt icky. All I wanted to do was lie down, but even that felt yucky.

I don’t read side effect lists of medications when I start them anymore, because I’m a hypochondriac. If it says that it’s possible to become spontaneously pregnant with a whale, I’ll be sure to birth the world’s first human-whale hybrid, on the spot. So, I usually give a med a fair shake, and then if I feel iffy after a while, I check into it.

This had been over a week, so I looked at the list, and under the, “if these side effects happen, stop immediately and contact your doctor,” were rash that looks like red pinprick dots, feeling sick all over, and irrational anger. Did I not mention that the sight of my husband made me so angry that I was having trouble restraining myself from not punching him in the face? My husband, who happens to be the most perfect partner in the world, and I wanted to smack him, just for asking, “what’s wrong? Why are you so mad at me?” I don’t know! But, stop being!

Do you like my "Honey, I'm the toilet, and getting ready to shower, but look at this rash that I'm suddenly, and immediately so concerned about that I couldn't wait for a more appropriate time to photograph it, and tell me what you think," photo? What? You've never texted your husband from the toilet? Okay, then you are a better, and classier person than I. So yeah, that's my bra on the floor, and those are my legs. And that's my hideous rash, and my dry hand, with all the moisture sucked out of it from painting a wooden board for three days on end. Meh, I text my hubby on the toilet. I could do worse things. I could've slapped him for existing.

Do you like my "Honey, I'm the toilet, and getting ready to shower, but look at this rash that I'm suddenly, and immediately so concerned about that I couldn't wait for a more appropriate time to photograph it, and tell me what you think," photo? What? You've never texted your husband from the toilet? Okay, then you are a better, and classier person than I. So yeah, that's my bra on the floor, and those are my legs. And that's my hideous rash, and my dry hand, with all the moisture sucked out of it from painting a wooden board for three days on end. Meh, I text my hubby on the toilet. I could do worse things. I could've slapped him for existing.

Yeah, so I’ve stopped that drug. I’m hoping that I’m allergic to the drug, and not the sun. I also hope that I'm not allergic to existing in the same house as my husband.  It would suck to be allergic to the sun. I've been off of it for almost 48 hours now, and I can already tolerate my husband's breathing much, much better, so thins are looking up.