Growing Pains

Hi there! It's been a pretty good week. Our family's most recent stressors and struggles have shifted, and several have improved. I'm calling them growing pains. I'll share them in the random order they occur to me:

My rash:

Sooooooo, the biopsy and blood test results came back. It's very unlikely the rash was caused by an allergic reaction to any medication. They found antibodies in my blood that indicate I have a rare autoimmune blistering disorder. My immune system attacks some of the proteins that connect the top layer of skin to the one right below it. It's a condition that usually shows up in folks older than 60. How crazy is that?! Way out of left field. Yes, it's a chronic condition that will need to be managed for the rest of my life. Yes, I'll be susceptible to flare ups and side effects from medications (typically steroids and immunosuppressants). No, it's not life-threatening. No, I'm not terribly concerned about it. Any more. The initial news was a shocker. But now, after some time to get used to the idea, and seeing this rash subside with treatment, I'm feeling okay about it. Just gonna add it to the pot simmering on the back burner. In the meantime, I feel 99% normal. I'm back to exercising, praying and reading scriptures, connecting with friends, laughing with my kids, and feeling more resilient. The 1% that's not quite "back to normal" is the low grade tingling-itchiness that comes and goes, especially in my hands. The feeling itself isn't as bothersome as the reminder that things have changed for me. 

Here's what the rash looked like in all its glory. Imagine this from scalp to fingertips to knees, but not on my face for some reason. It felt like a burning fever, itched like crazy, and peeled like a horrible sunburn. 

One month later, I've got this: skin that flakes and shady splotches where the rash was.

This peeling on my hands reminds me of when I was a child and my hands would peel a couple times a year. Usually spring and fall. 

Matthew's Anxiety:

He's a new kid with this new school. He suddenly has a sense of humor. He excitedly talks about what they did in class that day. He's loved his afterschool science class WITHOUT James. And now he's talking about joining the archery team, even as James shows no interest in it. Seriously, folks, you have no idea how revolutionary this is. Matthew still has anxiety episodes (hoo boy), and bedtime is still hard (better, but still a rough transition for him), and we are still very careful every day about our tone, our word choice, our scheduling pace, and our routines just to keep Matthew on an even emotional keel. That said, he's more delightful and more delighted about life than ever before. That's significant. We met with a provider about the possibility of anti-anxiety meds. She was concerned that his anxiety isn't a constant, underlying fear (nausea, stomachaches, anxious behaviors that draw attention from peers and teachers, trouble staying asleep) that would obviously be improved with medication. His anxiety is strong and over the top, but it's situational. It comes and goes. It's only triggered by specific things. She also noted that his physical/verbal tics and his mild-moderate compulsion to balance sensory inputs are more typical of OCD than anxiety. None of this was new to us, but I feel better having another perspective. She consulted with other psych folks and decided that it would be okay to try a very low dose, entry-level SSRI to see how that affects things. I'm okay with that. 

Bobby's fatigue:

I don't think I've mentioned this on the blog yet. Bobby has recently had some intermittent symptoms that we haven't yet been able to diagnose. He gets episodes of chest tightness, fatigue, and GI upset. One day he'll be fine and going to work, and the next day he'll be too exhausted and crummy-feeling to do much more than the bare minimum. He's had CT scans, blood tests, and a heart stress test. Everything so far has checked out with gold stars and two thumbs up. He gets a temporary heart monitor this week.

James fitting in:

He's done a little better the last couple of weeks. He's had fewer anxious/depressive episodes. His toes are really painful, though. He tends to clip his nails very, very short and apparently gave himself two ingrown toenails. His instinct was to cut the nails even shorter to relieve the pain. It worked the first few times. Poor guy. The only thing to do now is watch for infection and wait for it to grow back out. Not fun. As for school, we're all getting used to doing homework regularly and learning where to look for assignments on Google Classroom. It's a lot more work than his last school, but the more he does it, the more confident he gets that he can do it. He's done several very difficult things this week: talking to a teacher about a late project, studying for a French quiz (the first studying he's EVER done), and buckling down on Saturday to finish his weekend homework. There's so much more to learn in middle school than what you find in textbooks! I'm so proud of him growing in these other ways.

Other bits:

--The garage freezer wasn't keeping the temp low enough and everything was half-thawed by the time I found it. I shifted things around and managed to save it all. 

--Our washing machine was finally getting unreliable enough that we needed to replace it. Getting a new one was easy. Getting it successfully installed was an exercise in patience. The new washer wasn't the same width as the old one (why aren't these things standardized??), so we had to rearrange some things, and replace a couple cabinets. I was able to install the first one on my own, but the 2nd one has me intimidated. How can I possibly line it up straight with the first one??

--Alex got deep into a woodworking project. He was creating a wooden model of a car (sort of) for his German Language teacher. He learned how to use an electric sander, power drill, dremel, and wood putty. 

-- Here is Alex's quilt top:

-- I found a new home for my road bike! I purchased a new one a couple months ago but didn't allow myself to use it until I had re-homed the first. It's hard to resell bikes. There are SO many variables, even after you've picked which type of bike and which size you're looking for. I got supremely lucky that 1) a young woman in the ward was looking to start road cycling, 2) she was my size, and 3) her dad was experienced enough in road cycling to appreciate this bike's potential for his daughter. I was thrilled to give it to them and they were thrilled to get it. Yay!

This Worked...

...for now.

Matthew's paralyzing meltdowns seem to have lessened significantly over the last couple of weeks. He's a totally new kid: confident, funny, kinda snarky in playful ways, and about 50% more resilient to external stressors. That last one is especially important at home. When triggered by a distressing event/topic, Matthew has had smaller, less distressing anxiety episodes that we can talk through before they explode out of control.

One part of this change is clearly school. He finally feels safe! 

Another part of the change stems from something he discovered about himself. Towards the end of one meltdown last week, he recognized that routines were very, very important to his feeling secure and happy. He suggested we adopt a more structured bedtime routine to help him calm down for sleep. 

I raised an eyebrow.

"That sounds like a great idea. Let's try that," I replied. Then asked, "What happens if you're scared or sad during the routine and don't want to finish it?"

*deep breath* "Then remind me of this conversation and I'll finish the routine without complaining."

Well, heck! Sign me up. I immediately set to work on a very specific bedtime routine that addressed the most common problems we had been experiencing. One major trigger for Matthew is feeling rushed. Another big hangup is feeling like he's disappointed you or done something wrong. Even saying the words, "You haven't done anything wrong," suddenly puts the possibility of error into his head and can paralyze him for a short period of time. 

So, we always start on time, but the rest of the times are flexible. The order of the steps is the important part. One thing at a time. And it's very important not to skip any steps if we're a little later than usual or if the adults are feeling done. That's rushing. And that's him feeling like he's let you down. 

I can tell you that it's been in place 1 week and Matthew has managed to fall asleep on his own every night. Before this week, he had me or Bobby in there pretty much every night because he was too scared to fall asleep on his own. 

Even tonight, when a random fit of unnamed anxiety crippled him at 7:30pm (where do these come from?!), he gathered himself together after the worst had passed and we just moved on to the next step on the list. He needed one reminder a little later to give the next-to-last step the full 20 minutes, but fell asleep soon after. 

This has been a miracle. I just wanted to record it here as proof that something has made a difference. For now. Who knows how long it will last, but I'll gladly take it any time. 

The routine: