Monday, July 4, 2016

Anaphylaxis: The aftermath

In my previous post, I told about the anaphylactic reactions I had a week ago. They caught me by surprise, but I've been just as surprised by the aftermath.

I mentioned in the first post a couple different times I felt "out of it" mentally. I initially assumed this was all from medication. I was taking a lot of Benadryl, and I know that makes me feel groggy! I was also on prednisone. I started at 50 mg per day and stepped gradually down to 5 mg. (Yesterday was my last dose, a cause for celebration!) I had a lot of steroids intravenously in the hospital. I'm still on Zyrtec and Pepcid (each of which combats a different type of histamine) twice a day, even though Zyrtec is usually a once-a-day medication.

But the foggy-brained feeling didn't go away, even as I stepped down my prednisone dose and greatly reduced, then eliminated, Benadryl. I went back to work Tuesday, wanting to get back into my normal routines. We've also got a camp coming up soon that we're taking over 50 kids to, and I wanted to do prep for that.

But at work, I was just so tired. I was also feeling a ton of stress and fear, not knowing why my body had suddenly betrayed me. At some point during the day Tuesday, I went into an office where three female friends work, shut the door, and opened up about how scary the whole thing had been, and how overwhelmed I felt. I cried. They listened and prayed for me, and I felt a lot better.

Tuesday afternoon, I went to an allergist. (I'd called for an appointment on Friday after my visit with the nurse practitioner.) I had a fantastic consultation with a Physician's Assistant (PA) there. We talked in great detail about what might have caused the hives, and how we could work to get to the bottom of them. By then, I knew my hospital visits would have put us over our yearly health insurance deductible, so I told her that 2016 is a great time to do whatever tests we need to do. (They're also going to look into my seasonal allergies, and I'll probably start treatments for those later this year.)

The PA told me that the two most likely causes were a food allergy or an autoimmune disorder. "Autoimmune disorder" is a scary term, when it might apply to me! I told her that, and she was encouraging, telling me that once we have a diagnosis, we will know what to do to treat it. She wanted to do extensive blood tests (for autoimmune issues and various other things.) I filled out a records request so recent blood work records would be sent to the allergist, allowing us to target which tests still needed to be done.

We also talked about a plan for doing skin testing for food allergies, but the hives have to be 100% gone, and then I have to gradually wean off the antihistamines I'm on. I have to be off antihistamines for a week before doing skin testing, so between waiting for the remaining hives (including the discolored, flat spots) to go away, weaning off meds, and being off meds for a week, she prepared me for a month or so of wait before doing any skin testing.

The PA is great--I so appreciate her thoroughness and the amount of time she spent with me. She has 15 years of experience in the allergy field. After she discussed my case with the doctor she works with, she called me with a few more questions. The next day, we talked on the phone in more detail.

Tuesday evening I got home and stayed busy most of the evening. I made bread and tidied up my neglected house. We were planning to go on vacation on Thursday, and a friend came over to meet our dog since she was going to watch him for us. I finally slowed down around 9.

Wednesday, I got up and found hives on my legs again. With Benadryl, they went away in a couple of hours. But my husband and I started talking about canceling the trip we'd planned for the next day. (We'd been planning to drive about 10-12 hours over the course of two days, for a family reunion.) As soon as we started considering it, I felt more peace. I knew I didn't want to be away from home while my body was still going through some sort of reaction. I also knew that just preparing for a trip would be difficult with my reduced energy. We decided to cancel the trip, and I knew in my heart that it was the right choice.

When I was ready for work, I got a ride from my husband because I was so, so tired and fuzzyheaded. I expected the feeling to pass through the day as the Benadryl left my system, but it didn't. I got work done, but I felt so exhausted and generally bad. I asked a coworker for a ride home at the end of the day (mid-afternoon for me), and when I got home, I took my blood pressure, wondering if it would be as "off" as I felt! Sure enough, it was pretty high. I called the allergist. The PA wasn't working at that office that day, but the doctor suggested I come in, since he doesn't trust automatic blood pressure cuffs.

I confirmed with my awesome friend who watches my kids that she didn't mind keeping them a bit longer--and she even gave me a ride since I still didn't feel like I'd be safe on the road. At the allergist's office, I met with the doctor. My blood pressure was still high, but lower than it had been at home. I started telling him all the ways I just didn't feel like myself...primarily physical exhaustion, mental fogginess, and this odd tingly/somewhat numb feeling in my cheeks.

The doctor assured me that the symptoms I was having were all normal for someone on prednisone, and experiencing a big, acute, systemic reaction (involving anaphylaxis.) He told me the extra anxiety I was feeling was normal, because of my situation and the prednisone. It really helped hearing that my symptoms were all normal. "I think I just want you to tell me I'm going to feel like myself again soon," I told him. He assured me that he expected me to, but he didn't want to give me a date by which I'd feel normal. However, he said, these types of acute reactions usually affect someone for 1-2 weeks.

He and I also talked about the reactions I'd had and possible triggers. He encouraged me to journal everything, and I've been complying. I write down what I eat, any symptoms I might have, when I exercise, when I get bug bites, etc. He said one day I may suddenly see a connection between what I do or ingest, and the reactions I have. I can tell that he and the PA are both very thorough, and I love that I got to meet with both of them, since I could tell they both picked up on different things. I feel so great about the care team God has matched me with.

After meeting with the doctor, I texted some women I work with and asked if someone could organize meals for my family for a few days. They did, and it was so helpful.

That night, I found myself dwelling on the extent of the stress I was feeling, mental and physical. I knew that I needed more than a good allergist team. I needed someone to help me cope emotionally and spiritually too. I emailed the office of a counselor I've seen before and asked if they could get me in quickly.

Thursday I went to work, still tired and not feeling like myself, but alert enough to drive, which felt good! The counselor's office called me and fit me in for that afternoon. When I sat with the counselor, I knew I'd done the right thing. After I told her the story of the previous week, she said, "It seems like your whole body is screaming for rest. Why aren't you resting?"

That was a good question! It came down to two things: One, I wanted to get back to my normal routines because everything in my life felt out of control, and routine felt comforting. Two, I didn't want to be at home in bed, getting depressed. But as we talked, I realized the obvious truth--I was in dire need of rest, and I wasn't going to feel better until I listened to my body. I also realized that rest doesn't have to mean "laying in bed, getting depressed." I could take time to do things I enjoy, things that don't use a lot of energy. I went home, feeling relieved to have a plan of action...or rather, a plan of inaction! I decided to take off the remainder of the time I'd already scheduled off when we'd planned our out of town trip. I've been off since then and plan to return to work on Wednesday.

I want to stress how important it was to me to go to a good counselor. Body stress is really, really stressful to the mind as well. I can be terrible at admitting that my psyche needs help. I'm glad this time I asked for help when I needed it. If this ends up being a long-term problem, I fully expect I will need to go back to her to get some objective, expert help on how to cope.

Friday after I'd spent the morning and much of the afternoon at home, the allergist called letting me know that my lab orders were ready. I picked them up and then went to a lab, where they drew seven (!!) vials of blood. I really hope the allergist calls Tuesday or Wednesday to set an appointment to discuss the results.

My time off has been so helpful. My energy has been gradually increasing. It's frustrating that I still feel like I'm only up to 70-80%...but that is so much better than I felt several days ago. I Googled "exhaustion after anaphylaxis" today and discovered that what I'm feeling is totally normal and common. (It's one thing for the doctor to tell me that--it's another thing to realize there are real people who have felt like I feel.)

Emotionally, I'm up and down. Truly relaxing has been harder than I expected, with a church camp coming up in a week! Having my routine so shaken up has been hard. Living in The Unknown is scary. So I keep telling myself it's okay. It's okay to not feel completely happy. It's okay to feel anxiety and fear and sadness. It's okay! I need a lot of grace from myself right now.

I wish I had known to expect these ongoing physical and emotional symptoms after the initial anaphylaxis had passed. I hope that as I share my experience, it prepares someone else who might go through the same thing in the future!


Amanda said...

Praying for you, friend! Thanks for being so open to share your story, and I hope that they figure it all out soon!

Unknown said...

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