In Which I'm Reminded of How Uncomfortable Hospital Beds Are

I've been dealing with this somewhat mysterious exericse-induced anaphylaxis diagnosis since June, and its had its ups and downs, and certainly is something I'd rather not be afflicted with, but mostly it's been something I've felt was manageable. The last time I had an outbreak of hives, I got a little down, but did my best to move forward and not dwell on it.

When I went weeks without an incident, I could almost forget that it was even an issue.

But yesterday morning was a very vivid reminder that it is still very much an issue. As I neared the final mile and a half of my run, I felt a very faint itching sensation on my hands. It wasn't quite the same as it usually feels when these reactions happen, though, and at first I wondered if it really was an allergic reaction, or just something that had irritated my skin.

I ran a short while longer, but even though I was still feeling ok, and not all that itchy, I still decided to be safe and stop and take a Benadryl. I hate to take it, since it leaves me feeling sleepy and out of it for the rest of the day, but I was trying to do the smart thing.

I was in this exact scenario two times earlier this year, and did the same thing I did this time - took the Benadryl, and walked the remainder of my route - and both times, as soon as I stopped walking, the hives came out in full force, but after about 15 or 20 minutes, they'd start to subside, and I wouldn't experience any other symptoms.

So I figured that's what would happen this time, too, and I decided to walk the final mile or so. Yes, I could have called Scott, and in retrospect, I should have. But I foolishly didn't want to inconvenience him.

He was home with the kids, and I know what a pain it is to have to corral them all into the car - and it was early in the morning, and they were in the midst of getting ready for school, and since I felt like this was going to end like all the other incidents (me covered in hives, but otherwise ok), I didn't want to mess up the morning routine by making them all come out and rescue me.

I was even worried about how much longer it was going to take me to get home now that I was walking, and feeling bad that I had been out for such a long time, and was figuring out what I could easily put together for the boys' lunches. I still thought this was all going to be over quickly.

Unfortunately, that was not the case. As I kept walking, I felt worse and worse. My stomach was bothering me, I was having trouble catching my breath, and I was feeling lightheaded. At this point, I almost started crying. I didn't want to be going through this. I was so mad, and frustrated, and didn't know quite what to do.

Once I got home, I laid down, hoping that the Benadryl would kick in and I'd feel better, and to some extent, I did - my breathing was fine at this point, and I didn't feel lightheaded anymore, and strangely, there were no hives. And because I was starting to feel better, I held off on using my epi-pen. In retrospect, a foolish decision, but I had never used it before, and it's pretty serious medication, and it's kind of scary to put something like that into your body. 

But although the other symptoms had disappeared, I now found myself laying in bed shivering uncontrollably, even though I was covered in several blankets, and I knew the epi-pen was the only way to fix it.

Unfortunately, even after using it, I still felt kind of lousy. I still had the chills, and felt kind of queasy. I didn't know if it was the effects of the epi-pen I was feeling, or if for some reason it wasn't working, but both Scott and I were sufficiently freaked out and knew it was time to head to the ER.

Within 20 minutes of being there, I was feeling fine, and as it turns out, I was mostly feeling the effects of the medication at that point. But even though it meant spending two hours sitting in a hospital bed hooked up to monitors, I'm glad I went.

I spent the rest of the afternoon doing a whole lot of nothing. Between the Benadryl and the fact that the entire episode just completely drained me, I was pretty spent. Not to mention depressed.

I thought I had learned how to live with this, and how to sort of manage it, and it didn't seem like anything terribly scary or threatening.

Now, I'm terrified. I'm scared to run. I'm scared that this is going to happen again. I'm scared that next time Scott won't be around and I'll have to be carted off in an ambulance. I'm scared that I'll be sitting in the ER while someone else picks my kids up from school, and that they'll be terrified about me being sick. I'm scared that it could be even worse next time.

But at the same time as I think of all those things, I also think about how I simply can not stop running. It's who I am, it's what I do, and for every time this happens, there's 30 times that it doesn't.

I'm really struggling, though. Struggling with the fact that something that makes me feel so healthy, and so strong, and at times nearly invincible, also now has the potential to make me feel the exact opposite. And something that I can always count on to relieve stress is now the source of a great deal of stress.

Because of that, I'm no longer satisifed with this being a mystery. I need to do some more digging, and hopefully uncover some more answers - and I'm pretty certain that's going to mean traveling to Boston or elsewhere to see a different doctor. My local allergist just doesn't have experience with this condition, and I need someone who does.

I'm already in the process of collecting names and numbers, and hopefully will have an appointment set up somewhere by the end of the week.

Honestly, I don't know if a second opinion is even going to provide more definitive answers, since everything I've read about this suggests that it isn't very well understood by anyone - but I feel like I've got to at least try.

And in the meantime, I can't brush this off anymore. I can't worry about inconveniencing anyone if I need to be picked up in the middle of a run. I can't worry about the effects of the epi-pen. I'm not very good at asking for help, but I need to get over that, because it was made abundantly clear to me yesterday that this is not something I can fool around with.

This all may sound kind of dramatic and over the top - and when I go out and run and race and everything's fine, it's easy to think that I'm being overly dramatic. But the potential is out there for me to go into anaphylactic shock, and, well, that's pretty damn dramatic.

So, I'm on the hunt for answers, and I'm attempting to come to terms with all of this.

And I'm going for a run tomorrow, and hoping it's an uneventful one.

Comments

[Michelle Hand]

Michelle, I can't say that I have experienced what you have but do understand how you are feeling. I do want to tell you that I am always around if you ever need anything. I am not far away! Hope you find your answers quickly and resolve the issue you are having. Don't hessitate to call.

[Laura]

Oh, gosh, Michelle. I wish you didn't have to deal with this! I know I'd do the same- can't stop running, but you don't want to inconvenience people either. I think it's a great idea to get more opinions and hopefully more answers. Thinking of you!

[Jen]

Wow! This is a bizarre disease. I can see why you're afraid to run again. I hope you can figure it out. I'll be thinking of you!

[Michelle]

Thanks, everyone. It's frustrating, to say the least, but I'm just going to keep dealing with it the best I can.