Riding the Dragon

I recently had to pause my medication for Crohn’s Disease, and since that brief interruption I’ve been experiencing a slow slide into old symptoms. Compared to patients in a flare, it’s absolutely nothing. For me to live fearlessly and parent on the fly, it’s worrisome. What if I have an episode while I’m out with all three kids? I already have pretty high anxiety, so any wildcards make me a little agoraphobic. It’s just safer to stay home.

It has taken me a long time to find a medication that works for my disease, and switching to a new one is not as simple as getting a new prescription. Right now I give myself a shot every other week, and it’s no big deal. A new drug would mean blood testing, possibly a few scans and a gallon of barium contrast, loading doses (where you take a ton of the meds up front to establish them in your system), and maybe switching to an infusion that would require several hours at the doctor on the regular. It’s possible my drug of choice is becoming less effective, which has happened twice before with similar drugs, but I am hoping to stick with it as long as possible.

I feel like I’m holding a double arm-load of freshly folded laundry. I’m doing okay, balancing and keeping everything neat, but I occasionally drop a baby sock (have an episode). It could be worse, I could drop everything, so I let it go and keep moving. Baby socks are bullshit anyway. Crocs FTW. After continuing this way for a while, I decide I’ve dropped too many socks and need to adjust. There’s a huge risk that when I lean down to grab the socks, I’ll drop everything I’m holding so carefully. Are the things I’m missing worth the risk?

I called my doctor, concerned I was heading slowly toward a flare and asked how to get back on track. The answer was prednisone. The answer is always prednisone. It’s not just a steroid, it’s the steroid. Short term it can work miracles, from stopping asthma attacks or back spasms to keeping transplant patients from rejecting new organs. Long term, it’s an absolute monster. The list of side effects reads like a tragic opus, from rage to obesity to glaucoma. It treats you fast, but it rips you up faster. The low dose I requested hasn’t been effective, so this week we doubled it. That being said, it’s still a very low dose compared to the amount I’d need to recover from an all-out flare or obstruction.

A good friend with Crohn’s recalls waking at five every morning with a ton of energy (if only), but feeling angry all the time while taking prednisone. I am definitely partaking in

the mood swings, but I feel like my legs are walking through pudding. All my nervous energy is heading straight to my brain making me miserable rather than energetic. I’m mad at my kids, mad at myself, trying not to be mad at my husband while taking so many deep breaths to calm down I nearly pass out. I am retaining so much water I barely have eyelids, and my lower face is filling out by the minute. A tell-tale sign of a steroid patient is “moon face,” where the space between your chin and your Robert Mueller jawline fills in with fat deposits and swelling.

Sarah Hyland (Haley Dunphy from Modern Family) has been open about her health struggles and how much she dislikes being put on steroids that plump her face seemingly overnight. She has recently talked about using a face roller to drain the lymphatic system in her cheeks and jaw, and so obviously I immediately ordered one on Amazon. Maybe it doesn’t work, but it actually feels really good, especially with my face slathered in Grl Tlk Beauty‘s hydrating primer mixed with a little face oil so the roller glides easily. I’m still puffy, but the massage is soothing, so I’m calling it a win.

When I took this drug before, the most noticeable problem was my ravenous appetite that would wake me in the middle of the night with hunger so strong it was painful. I ate at least four full meals a day, and my face was not the only thing that plumped. This go

around with the steroids my biggest problem is the sweating. My God, the sweating. Now, it’s hot in El Paso, so you might think I’m confusing medically induced sweating with just being in the southwest in summer. Last week I was in Massachusetts, it was 60°F and raining, and there was sweat dripping off my nose. It’s like menopause, but the hot flashes can last hours. Anything that might normally make me warm, like exercise or a glass of wine? I am a human swamp monster. My trainer thinks I’m working my ass off all of a sudden, but in reality my body is a sauna suit I can’t remove.

I’ve never been a super sweaty person, but when I do it’s my face that gets gross first. Now, I have rivers running from my neck to my belly button, from my hair to my leggings. It’s really inconvenient.

The symptoms are piling up as I adjust to the new higher dose, but I’m hopeful it won’t be much longer. Unfortunately, you can’t just quit steroids, or your adrenal glands fail (or something?) so I will have to taper down slowly. So even when I’m feeling better, I will need to keep popping pills until my kidneys wake up (or whatever). So here’s to scientific discoveries that help us when we’re horribly ill, and here’s to the next discoveries that help us recover from the medications.