It’s not every day that your husband saves your life in literal terms, but Wednesday night should seal the deal for Todd to win Spouse of the Year (for the 14th year and counting). I had an allergic reaction to my new medication, and if it hadn’t been for him, I probably wouldn’t be typing this right now.

It started out with a funny rash on the back of my neck. Was it my hair tie? My ears itched. Was it the earrings I wore yesterday? But then my tongue started to feel thick when I was talking to my dad on the phone. Ugh. I did drink milk. I really shouldn’t do that. Now my neck really itched. Must have been the wool sweater I wore today.

Reluctantly, I tell Todd the latest weirdo symptoms of the day. Without a word, he runs to the bathroom and starts handing me kids chewable Benadryls. I lost count. “This many? Really?” I’m sitting on the couch and all of the sudden, I’m FREEZING. I start shaking I’m so cold. “I have to get in the shower and warm up. Maybe that’ll stop this funny feeling in my throat. It’s probably anxiety. I just need to calm down,” I tell him.

You see, I’ve gotten really good at downplaying EVERYTHING. Even when I really need to go to the emergency room, I’ve got to be sure that it’s not in my head. I really asked Todd if I could make myself have a rash and cause my tongue to swell just by thinking about it. Ok, we’ll go to urgent care, just in case. Never mind, I’m too tired. I’m just gonna sleep this off.

That’s when things start to get fuzzy. Somehow our awesome neighbor came over, and I ended up at the hospital. All I know is that it was hard to breathe on the way. Once the truckload of Benadryl hit my system, breathing got better, but paralysis was triggered by the stress of the allergic reaction. BIG time. Over and over. I lost count. I don’t even know how many times.

I listened to Todd explain it to the doctors and nurses. We had the worst and the best of ER docs, in that order. I wish the world had more physicians like ER Doctor #2. She was thrilled that we’d prepared a binder with a protocol for her to follow. She actually read it. She actually followed it. And she thanked us for it. I was in good hands.

Thanks to Peggy letting me sleep most of the day yesterday, I’m much stronger today. I saw my internist last night who confirmed our suspicion: I’ve developed a sulfa allergy. It can happen after repeated exposure which is why it took three weeks for mine to show up. Why is this a big deal? It means I can’t take the main medicine I need to prevent more muscle damage.

This medicine was really important. I was so excited to have finally built up to a full pill. It felt like it was working to prevent episodes, and I was determined to tough out the horrible side affects for the next few months until my body acclimated.

Over years of attacks, scar tissue has been building in my muscle fibers. In the last three months I’ve become very weak. Most people build strength by tearing down muscle fibers. But when you have a neuromuscular disease, it’s not that simple. What helps a person with normal functioning muscle cells can do a lot of damage to me.

My physical therapist and I are working on a plan, but I’ve lost a big safety net. I’m still waiting on the next step from the specialist in Philadelphia. In the meantime, I have another day or two before the drug is completely out of my system, so I’m taking the anti-histamines they prescribed exactly as ordered.

I’m feeling numb at the moment. Weary of drama all the time. And honestly, it’s hard not to miss having some dignity. That’s hard to find when you can’t move yourself on/off a gurney and you need strangers to help you use the restroom. When you’re able to hear, but you can’t speak. When you can talk, but it’s not the word you wanted to say. When holding your head up is just too hard.

If nothing else, I have much greater empathy than I once did. Even as a child, I always liked elderly people, and I would feel sorry for those that had lost their memory or couldn’t care for themselves. Now I wonder how many of them are screaming on the inside while having to accept help on the outside. Probably more than any of us want to know.