Thursday, July 21, 2016

Allergy update...the blood test results!

Today I went back to the allergist. I saw a different PA than I'd seen before. We discussed my blood test results.

Great news--there is nothing in my bloodwork indicating an autoimmune disorder or any other disorder! The one thing that was really high was my IgE level. You can read more about IgE here. High IgE indicates an allergic response to something. And mine was really high (normal is 290 or less; mine was 1399. The test was done 8 days after my hives started, when the hives had mostly gone away.)

A week ago, I had almost weaned off my antihistamines, when I again got hives. They were mild, but I had to go back on my meds. I am again in the process of weaning off those medications so that I can get my skin testing done for both food and environmental allergies. If the hives return, we have a couple of other medication options we can try that won't interfere with skin testing.

I did find one thing in common that I consumed before I first got hives, and before they returned last week. Both times, I'd had licorice root. Weird, huh? The first time, I'd had an herbal tea (Tazo Cocoa Mint Mate) with licorice root in it; the second time I'd had some fancy root beer with licorice extract in it. The allergist told me they can do a skin test for licorice extract if I bring it in with me. (Unsurprisingly, it's not on their "top 100" list of foods they are prepared to test for!) I just ordered some on Amazon, and I'm definitely curious to see if I react to it.

Sunday, July 10, 2016

A brief health update

After my last post, I woke up the next day (Tuesday July 5) feeling so much better. The day after that (Wednesday July 6), I felt back to 100%...just in time to return to work! 
Me feeling good enough for a cheesy grin and a thumbs-up

From the start of my hives and anaphylactic symptoms, to a full return of energy, was 13 days. If this happens again, at least I will have prior experience to temper my expectations!

The itchy hives have not returned, and the discolored spots on my legs are fading significanatly, which is all great news. Starting tomorrow, I will stop taking Pepcid. If the hives do not return in two to three days, I will reduce my Zyrtec to once a day, and a few days later, I'll stop taking it altogether. If all that goes well (no return of hives), I can have skin testing for food allergies a week after ending the Zyrtec. Hooray!

Some of my blood tests have come back. The PA and I discussed this only briefly on the phone, so I don't even know which ones have come back yet--but they were all normal or close enough to normal. This is somewhat frustrating--I want answers! But considering that one of the main points of the blood tests was to discern if I have an autoimmune disorder--the more I think about this, the more I am so glad the tests have been normal so far.

I am at the end of a slight head cold or something, but it never got bad, and it seems to be nearly gone. That's encouraging from an immune standpoint; my body is fighting the cold really effectively. Also, three days ago I got several ant bites and a bunch of chigger bites. The itching is NOT fun, but it's great that all these bites have not led to any systemic allergic reaction.

I'm wondering more and more if the events of two weeks ago were some freak, one-time thing. (Or it could be some sort of reaction that will repeat but not often--the last time I had unexplained hives was over 13 years ago.) Then again--it could happen again tomorrow (which would be really bad timing, so I'm praying it doesn't!) With that in mind, we'll continue to look for answers; I'd really like to know if I can do something to prevent future reactions.

This hasn't just been a physical journey; it's been emotional and spiritual as well. Listening to this message from my pastor was a turning point for me. God knows what's going on with me--even when I don't. If you're feeling fear about anything and are open to a God-based answer to that fear, you might take half an hour to listen to the message. It's a good one.

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!

Anaphylaxis: The initial reactions

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 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 get into my morning responsibilities as Children's Pastor at church, but the Benadryl had me feeling really out of it. I couldn't even walk straight. (The only reason I'd been able to drive myself was because it was 3 1/2 hours after a Benadryl dose, but then I took more at church!) I found someone to handle my first-service responsibilities, and sat in an office, resting.

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, 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.