There were so many names I could have given to this post, including, “Once Again, I Kick My Own Ass,” or “Crohn’s, the Gift That Keeps on Giving,” or even, “My Lumps: How Hives Lead Me to Enlightenment, the Lumpy Space Princess Way.” But I’m going with short and sweet Hive Realness because that’s the message I want to get across. Gaze upon my swollen visage. Earlier today it made a child cry. (Poor Isobel).
I can’t adequately describe what happened to me in 140 characters. My health problems aren’t simple like that. They have to be complex and convoluted and I generally have to go into some background information each time a nurse or doctor examines me. I have Crohn’s disease. I’ve had it for about ten years, and it has affected my life in countless ways, sometimes indirectly. Since I developed this disease, my body has drastically changed the way it responds to antibiotics. I have developed extreme sensitivities and allergies to most of the antibiotics commonly used to treat infection. All types of penicillin and sulfa drugs are out as my body jumps into hyper allergy mode and violently rejects them with terrible vomiting spasms. Medicines that worked perfectly before now cause total body meltdown on the inside of twenty minutes. I constantly worry about developing infections because I’m running out of options that won’t make me sicker than the original infection.
When I developed that bladder infection, I was given an antibiotic I had taken before that did the job of killing the infection without making me want to die, too. But this time my body had a harder time with it. Antibiotics can be terrible for any auto-immune disease patient because you are essentially arming your body with weapons it will use against you. In fact, one of the treatments for Crohn’s sufferers are immuno-supressants that help you by calming down your body’s internal civil war. This time my body reacted differently, more sensitively, to the prescription. I was dizzy and nauseated, but able to function for the most part. Until I broke out in severe hives on Friday morning.
We’ve ruled out all the other things that would make me react this way, so it seems I’ve stumbled upon another medicine I can’t tolerate. I’m in day three of hives agony. I went to the urgent care on Friday morning and was given an injection and was told to buy some Benedryl. My hands were so swollen from the hives that I couldn’t even open the package; Anthony had to come home from work to do it for me. The hives are everywhere: my knuckles, the palms of my hands, in between my fingers, inside my ears, the tops of my ears where my glasses rest, my scalp under my hair. My earlobes have doubled in size. My skin resembles something of a cross between the cheeks of Edward Olomos and bright red hamburger meat. My lower lip has swollen to the extent that it looks like I’m making a sassy pout at all times. I woke up and my eyes were nearly swollen shut. Scratching burns like fire, but trying not to scratch my body is like trying not to breathe.
I went to the ER on Friday after it was apparent that the treatment at the urgent care was not enough. I have such a severe case that I’m on three different steroids, a topical cream for itch, three oral meds for itch, plus precription strength benedryl. One of the steriod shots I received at the hospital was the most painful injection of my entire life. It was in the hip and it burned and sent spasms up and down my back. It was so intense it triggered my vascovagal response and I almost immediately started vomiting and shaking and I nearly passed out. It’s a perfectly normal reaction to have but it hadn’t ever happened to me and it was terrifying.
Naturally, I took to twitter this morning to complain. I was straight up venting on twitter, which is something I try not to do, but I’m glad that I did. It was such a relief to complain and I felt the better for it. I received support from so many of you that really prevented me from being stuck in a oh-woe-is-me attitude. I felt it was risky sharing a such a horrible photos of my face, but you guys made me feel safe to do so, and sharing authentically also gave me a chance to release negative emotions and I could move on to laughing about it. I really appreciate everyone who reached out to show their support, condolences, and laughs about my situation.
I have a very severe case of hives, and in addition to the ridiculous amount of medications I’m on I’ve also tried topical Rx creams, coconut lotion, and a soothing bath (which was awful – water on my hives made it feel like I was bathing in needles).
On the plus side I was told I could totally commit crimes right now and wouldn’t get caught because I look like a completely different person. My permanently sassy face now matches who I am on the inside. The fact that I’m covered in angry welts and lumps is perfect if I want to dye myself purple cosplay Lumpy Space Princess.
We’ve now been to the ER more times in a year than we’ve been during our entire lives. I’m sadly on familiar terms with it now. After everything that happened with the gastroenteritis and Isobel getting sick and my UTI, all I had wanted was some sickness-free time in our household. I even said as much in a recent blog post. This is what I get for making specific requests of the Universe.