Aquagenic Pru-what-us?

I'm about to sound crazy.  I used to think I was.  Now I know that I have something called Aquagenic Pruritus.  I'm sure you've never heard of it.  It is rare and not fully understood.  So, what is it?  It's a skin problem that is triggered by water.  It's almost like an allergic reaction.  How ridiculous is that?!

For as long as I can remember, I've gotten itchy after bathing, swimming, or otherwise getting wet.  It isn't every single time and the severity varies from time to time.  The word "itching" doesn't really cover it, though.  It's really intense and prickly and the sensation can last over an hour.  Some people describe it as bugs crawling under the skin.  I think of it as the worst "pins and needles" sensation ever.  The prickling is mainly on my legs but sometimes on my arms, as well. There is no visible issue--no bumps, hives, etc.  Scratching helps for a moment but then I feel like scratching my skin off.  Lotion doesn't help because it's not dry skin.  It is intense to the point of distraction and tears.  It's frustrating.

A few years ago I was suffering from a particularly bad bout of it and decided to Google it, on the off chance that I wasn't alone.  Sure enough, my search for "itching after showering" returned thousands of results.  That's when I found the term aquagenic pruritus and accompanying information.  I found support groups full of people who suffer with it to the point of avoiding bathing altogether.  I was amazed!  Not only was I not crazy, I wasn't alone, either!

That's when I started looking for treatment options, which is when the bad news came up.  There are ideas and suggestions but no "cure" or guaranteed treatment.  Antihistamines and antidepressants can help some people, and I certainly get relief from mine.  When I started taking both daily was when my symptoms lessened.  Some people get relief from certain water temperatures but I haven't noticed that for myself.  I seem to do better if I bathe at night or if I drink water before my morning shower.  None of that is full-proof but it's better than without.

Obi-John, God bless him, didn't bat an eyelash when I mentioned my search results to him.  He had seen me curled up in the fetal position, scratching, and in tears so he knew what I was experiencing.  Then I got brave enough to mention it to my primary care doctor, expecting doubt from her.  Instead, she knew about it and listened to me.  She didn't have any suggestions but appreciated hearing what works for me so that she could pass along ideas to other patients who are suffering.

I don't know if any of you have these symptoms--I've always been nervous about sharing my symptoms with others since it sounds crazy--but I hope knowing that you're not alone helps.  Gentle hugs!

Lesson Learned

Time got away from me and it has been far too long since my last post.  I’ve had many ideas for topics but not the energy to sit down and write.  Today I am making time.  My last post was about camping and this one stems from the same activity.  I mentioned that I would be going with my family on a Cub Scout Camping Trip.  Let me tell you about the good, the bad, and the big lesson I learned.

Prior to the trip we shopped for food, made lists of items needed, and loaded the van with a multitude of camping gear.  We were well prepared for what we expected—we had a nice tent, air mattresses, etc.  We arrived at the camp and signed in.  The deal was that we had to drive to the site, unload, and then park back at the camp entrance.  That seemed harmless enough.  Hah!  We found our designated site—wait, no, we found a cul-de-sac with a sign that indicated our site was back away from the road.  Uncertainty set in.  We found a sign at the beginning of a trail that we assumed would lead to our site.  We began to hike said trail, following it up the side of a hill as it meandered through the woods.   After a few twists, turns, and a flight of wooden stairs we happened upon our designated campsite about a quarter mile from our van. 

Concern set in.  The upside?  Our campsite had what were essentially cabins, complete with bunk beds.  There was a fire pit, covered picnic pavilion, and running water from a simple spigot.  Well, we wouldn’t need our tent, mattresses, or water supply.  How much stuff could that leave to be dragged up the hill?  A LOT.  It took many, many trips as dusk descended.  My Fitbit was racking up steps a rate never before seen.  It registered my hikes as over 50 flights of stairs.  We managed to get every up and settled, including the generator that Obi John wanted so that we could charge our phones and run a fan—aren’t we rustic? 

Exhaustion set in.  The kind with heaving breaths and near-blindness, screaming muscles and the desire to dissolve into a puddle.  After some fire-roasted hot dogs and the mandatory s’mores we crashed for the night.  I will admit that the sleeping arrangements were pretty decent for a cabin.  I had a double mattress and a cozy sleeping bag.  The fan kept us cool.  The night was peaceful.  And it was good.

Morning broke and I felt like I had, too.  But up I got and Obi John and I put together a pretty nice breakfast of eggs, bacon, and grits.  We skipped the morning flag ceremony, which proved to be our downfall.  Whatever they told Obi John at the previous evening’s parent meeting didn’t cover the daily schedule.  So off we trekked, looking for the plethora of advertised activities.  We walked and walked, looking for fun.  We found a lot of nothing, waaaay over on the other side of the camp.  Did I mention that the roads were all crushed rock? 

We eventually ran into to the other families from our den and managed to do a couple of things before the scheduled hike.  I hated to admit it but I wasn’t up for the hike, which I had been really wanting to do.  So I parked my tired hide in a rocking chair and read, part of the time with my eyes closed.  A couple of hours later I received a call from Obi John informing me that the majority of the hike was vertical and I would not have made it.  Minutes after disconnecting the heavens burst forth with a monsoon.  I rocked for another hour or so until my tired, soggy family returned.  We attempted a bit of fishing but the only thing that was caught was a tree. 

The rain abated and we decided to take advantage and load the van with all but the bedding and breakfast.  Obi John had managed to bust his knee on something and Monkey twisted his ankle while hiking so I did the lion’s share with help from Big Red.  I dragged myself back up the hill after packing and re-parking just as the rain began again.  We conceded defeat to the rain and had a quick dinner before retiring to the cabin-thing.  The next morning we managed to get ourselves and the remainder of our belongings to the van and headed to civilization for breakfast. 

I don’t want to give the impression that no fun was had—it was.  Amid the chaos of poor planning by the campground and bad weather we squeezed in some good, old-fashioned family fun.  We played with fire, ate things on sticks, and got dirty.  I also learned a very valuable lesson.  I have to ask for special accommodations.  I asked about campsites for those with disabilities and of course they have them.  It hadn’t even occurred to me to ask.  I need to start doing that.  Obi John is now charged with helping me remember to ask about accommodations when going places.  It isn't a matter of wanting special treatment, but a matter of knowing my limits.  Lesson painfully learned!