My first reaction in sitting down to write a post after over a year is to give some sort of apology, or at the very least, an explanation. But I know that's not really necessary...so I'll just say this: Life happens, and blogging just isn't always part of that. But I'm glad my blog is sitting here waiting for me when I need it again!
I have entered a Twilight Zone of allergic (or allergic-type) reactions, and I feel the need to start blogging about this. I want a record of it for myself; I want to share for others who might benefit from my experiences; and I want people who care about me to be able to keep up with what's going on and why it seems to be such a big deal to me!
On Thursday June 23, I woke up with hives. I posted a picture on Instagram, joking that if I was out if it, it was due to Benadryl.
In late 2002, I had hives all over my body. They lasted a week or two, and they itched horribly. When they were gone, I got some blood and skin testing for food allergies, but it was inconclusive, and I went on with life. The only other times I've had hives all over my body were as an infant (penicillin reaction) and around the age of three (reaction to over 50 mosquito bites.) Both times, the hives were gone in a day or so. (Thank you, Mom, for your excellent memory!)
Thursday, I took a Benadryl, got ready for the day, took a second Benadryl, and headed to work, feeling kind of loopy. I shouldn't have driven, but I did--I even made a couple of stops on the way. (I assumed the loopiness was the Benadryl, but later realized it may have been partially due to the reaction my body was sustaining.)
At work, I sat at my desk and suddenly felt faint. I didn't feel on the verge of passing out--just a little faint, and nauseous, and just "off." I put my head down and asked a coworker to grab me some water. I sipped it, ate a breakfast taco I'd gotten on the way to work, and felt better. I headed into a meeting, but all morning I really felt out of it. The hives improved on Benadryl, but later in the day, they were worse again. At lunch, the food didn't taste very good, and my appetite was reduced.
At bedtime, I'd again taken Benadryl, but I couldn't get to sleep. My body just felt "wrong" and "off." I got up to take my temperature (normal), and on the way back to my bedroom, I had to sit on the floor, feeling a huge wave of faintness/lightheadedness. I felt I was going to vomit. I felt I was going to have diarrhea. I felt utterly and completely wrong. I called my husband in. He brought me a bowl (which I didn't need), and, after a couple of minutes, helped me to the bathroom.
I sat there, my whole body crying out that something was wrong. I told my husband that if this continued, we'd need to go to the ER, because I hadn't felt this way with hives before. But in 10 minutes or so, it passed. I did some Googling on hives/feeling faint, and came across the possibility of anaphylaxix. But my faintness had passed, so I wasn't concerned enough to follow up that evening.
The next morning, the hives were worse. My stomach was practically one big welt. Friday is a day off for me, and we had an Internet/TV installer coming as early as 9, so I got to the RediClinic at H-E-B (a grocery store) before they opened at 8. They got me right in. As I told the nurse practitioner what was going on, we agreed I needed steroids. We talked about what could have caused the hives. (I'd gotten what I assumed was several mosquito bites two nights before the hives started, which didn't seem likely, but we couldn't think of anything else.) And then I remembered--"Oh. And I also had these two episodes of feeling faint yesterday."
The nurse practitioner suddenly got very serious. She started talking to me about the signs of anaphylaxis. She told me she was prescribing an EpiPen, and if I felt faint again (or had swelling in my mouth or throat), I was to use it. She told me I needed to see an allergist ASAP. Suddenly, I felt like I was in some completely different world I'd never entered before. I got scared, tears in my eyes. She had the most amazing bedside manner. She comforted me, and told me, "This is going to be okay. We can do something about this. We just need to take it seriously."
Calmed down somewhat, I headed to the pharmacy to get my prednisone and EpiPens. I found out that even with a $100 coupon, the EpiPen two-pack would cost me $527. We are incredibly blessed that we have money saved, but it was still one more stress added to the rest. I got the prescriptions and headed home.
At home, I met the AT&T installer. I wanted to rest after my rough night, but he was there most of the day, so I never took a nap. I used the EpiPen "dummy pen" to learn how the device worked. I taught my kids how to use it on me, and we reviewed how to call 9-1-1. My daughter thought it was pretty cool; my son was scared and said he hoped he never had to use the EpiPen on me!
The hives stuck around all day, and that night, I had a really bad night trying to sleep. The hives had spread to the palms of my hands, which was incredibly itchy and irritating.
I woke up still tired on Saturday morning, the hives having spread to my neck. I put a bottle of water up to my lips, and it felt weird. I went to the bathroom and saw a swollen bottom lip.
It doesn't look weird if you don't know me, but trust me, I don't normally carry such a resemblance to Angelina Jolie. It was definitely not normal. My throat was also starting to feel tighter, though I was breathing and swallowing fine. I got advice from friends on Facebook (hey, it takes a village these days, right?) and also from a nurse practitioner I know. She recommended I use the EpiPen. I did. I felt my heart racing and my hands shaking. Thankfully, I'm the type to read package inserts, so I knew that was normal! It still felt very weird.
My throat was still feeling tight, and so after a little while, we headed to the ER, having found friends to watch the kids. (Note: I've since found out it's very important to ALWAYS go to the ER after using an EpiPen. I was waiting to see how much I improved, but a secondary reaction can happen. Plus, epinephrine is a strong medication requiring observation.)
At the ER, they gave me more epinephrine, more steroids, more Benadryl, and even Pepcid (which is an antihistamine in addition to its use as an acid reflux medication.) They told me I'd done the right thing coming in, but the doctor didn't seem too concerned. "If your throat was swelling from allergies, your voice would be hoarse," she told me. "It looks like your uvula is swollen. Are you feeling the swelling up high?" I told her that no, I was feeling it at the base of my throat. One thing I'm learning from this whole situation is that I know my symptoms better than others do, and I've got to trust my own instincts. I do think my throat was tight, just not very tight. And yes, I'm sure anxiety made any small symptom feel bigger to me! The lip swelling was definitely real, as were the hives, as were the episodes of feeling faint two days before. My body was sustaining a very real, if mild, anaphylactic reaction to something.
I was at the ER for about two hours, and then we went home. I took a nap. I canceled an early morning meeting I was supposed to have with volunteers at church. That night, I took 50 mg of Benadryl every four hours throughout the night, feeling desperate to get rid of this reaction.
Sunday, I got up and went to church. I was exhausted. I still had hives, and they looked different. I had tan, flat spots between the red, raised spots.
I tried to go to our middle church service, but just felt so "off"--fuzzy-headed, not myself, and generally yucky. I went back to the office and sat down again. My tongue started feeling tingly and big, and so I went to the bathroom and looked at it. It looked weird. I asked some of my friends who were in the lobby. "Oh yeah, that's swollen," they said. My throat was starting to feel swollen again too, and this time, my voice was hoarse. My nurse practitioner friend (the same one I'd spoke with the day before) said I should head to the ER.
A friend drove me. I probably should have used the EpiPen, but the ER was close, and I could breathe fine, so I didn't. At the ER, my husband met me. (He'd been visiting his mom and was planning to go to the last church service.) My friend who'd driven me took the kids with her back to church, where another friend had agreed to take them home. Again, I felt the doctor somewhat questioning my symptoms, asking my husband if my tongue looked swollen. (He confirmed that it did.)
I was given all the same medications as the time before, but this time the epinephrine side effects were really scary. My heart felt like it was beating out of my chest. My hands felt tingly and numb. I felt like something was seriously wrong with my body. The nurse and doctor came back in, and the doctor told me just what I needed to hear: "I think you're having a panic attack." Just knowing that was calming to me, because I know panic attacks don't kill people! I just hadn't had a full-fledged panic attack before, and, well...it makes you feel panicked! The nurse came back after the symptoms had faded and gave me an antianxiety medication in my IV.
The doctor told me that she wanted to admit me overnight. They'd expected the symptoms to go away, and they wanted to observe me for longer than they could in the ER. I agreed, and they got a room for me.
Over the next 26 hours or so, I was in the hospital, getting IV steroids every 6 hours, in addition to other medications. By the time I left the hospital the next day, the raised hives were gone. Some flat, discolored areas remain on my legs, and these are considered to still be part of the hives outbreak, but they don't itch at all. (A week later, they are very light, but not totally gone.) I did have one more outbreak of red, raised hives two mornings after my hospital release, but they only lasted a couple of hours. I did not have any more signs of anaphylaxis.
In my next post, I'll talk about the aftermath of my first experiences with anaphylaxis, as well as the allergists I'm working with.