Oh hey blog, long time no see.

I’m still working on a follow-up post to that last one. In the meantime, here’s what’s going on with me:

-Working with my urologist to see if my congenital kidney issue is in fact getting worse. After 2 imaging tests, it turns out it’s not getting worse…yet. Just another fun condition that I have to keep monitoring for the rest of my life and will possibly require surgery at some nebulous time in the future.

-Trying to find a mental health provider that is familiar with SPD/ASD in adults AND takes Medicaid (I anticipate this taking a while).

-Continuing with my occupational therapy for SPD.

-Working with my GP to find out if my sound sensitivity has a physical cause versus a neurological cause. Her preliminary diagnosis is Eustachian Tube Dysfunction (i.e. I have fluid buildup behind my eardrums), but a referral to an ENT/audiologist will give me some more details.

-Tutoring 3 students until the end of the school year, 2 in high school and 1 in middle school. Pay and hours are crap, but it pays the student loans and prevents the dreaded “resume gap”. And I guess it’s also good for experience in general. So, it’s something.

-Trying to incorporate all the changes my OT and I come up with consistently in every day life (transitioning into me cooking dinner instead of my fiance more often has been very helpful).

-Volunteering at my sensory processing therapy center and at the library.

-Job shadowing various PT/OT clinics and researching PT/OT graduate programs.

-Listing out other potential career choices, keeping in mind my sensory needs.

-Coming up with other activities that are productive (i.e. not Facebook) but don’t aggravate my physical issues (bye bye knitting, it was nice for the 15 years it lasted).

-Learning to advocate for my sensory needs in all variety of situations (such a constant, delicate balancing act).

-Joined the Autistic Gaming Initiative, despite knowing next to nothing about Twitch/streaming video games in general. The community has been very supportive so far, and even though it’s a learning curve to get started, it’s one that I’m looking forward to (I suppose caring greatly about the cause probably helps).

Most of the time, even though I know that I’m doing what’s best for me and my body, progress feels agonizingly slow. My OT says that this is actually a good thing. If I were to make sweeping, dramatic changes, it’s very likely that they wouldn’t stick long-term. That’s just not how the brain works. The key to making significant life changes as an adult with SPD is small, incremental steps. When I take the time to actually sit down and think about it, I really have made some tremendous progress. It’s just been over the last 3, 6, even 12 months. It’s easy to be blind to the progress we make when it happens slowly.

So, that’s where I am at the moment. Still feels like I’m on a crazy roller coaster about to be launched out of my seat any second, but at least I’ve ridden it a few times now so I know where the particularly wild sections are and can tighten my grip in those spots.




You have no idea what I’m talking about.

Hooooookay, I’ll back up and explain (but seriously, I CAN PLAY HANDBELLS AGAIN!).

I’ve been playing the handbells on and off since I was in middle school, along with many other musical endeavors. My favorite bells to ring are the lower ones, which may surprise folks due to my slim stature. Prior to all the issues I’ve had with my right hand, this was no problem. Plus, I just love subverting stereotypes at every possible chance (like working manufacturing jobs until recently).

Last fall, I decided to audition for a local ensemble as I knew a couple of ringers in it already and I had substituted at rehearsals a couple of times prior. Plus I was excited to try out for an ensemble that I thought would push my ringing skills. I was worried about my hand issues, but I had nothing to fear. There are a variety of ringers in the group with a variety of restrictions in terms of what bells they are able to ring, so our director is very accustomed to accommodating everyone’s needs (and it usually works out pretty well). I was put on the smallest bells for a majority of our Christmas program, but that wasn’t without its challenges.

In our group, the upper bell ringers are expected to ring octaves when called for in the music using a technique called shelley ringing. This means that you have two bells in one hand. This was no problem for my left hand, but because of the way you have to rotate your hand to ring this technique, and the added strain on the fingers, I was unable to do it with my right. Fortunately, other ringers in the group were able to help and fill in the gaps when they were not ringing their own bells. It required a bit of coordination, but we were able to pull it off for the first part of the season.

Fast-forward to November, and I’m getting ready to have hand surgery the day before Thanksgiving. We’ve just played a concert on the 10th, and are rehearsing for our busy December schedule. My doctor assures me that I will be fully recovered from the surgery in 2 weeks, no therapy needed, in time for our first concert on the 11th. Just to be safe, since I’ve been having hand problems for so long, she wants me to keep the bandages on for a week rather than the usual 3 days.

The bandages come off and my hand is frozen. I mean, I can barely move it in any direction without excruciating pain. I’m thoroughly bruised from my top knuckles all the way down to the middle of my forearm. I can’t even form a full grip, the tendons in all of my fingers have tightened so much. And it’s not getting better as the days tick by. Then, three days before the concert, my thumb tendon starts acting up and I can barely hold a pen long enough to sign my signature, let alone a handbell. I am panicking.

Fortunately, this handbell ensemble is full of wonderful, talented people. On the fly, they step in to help me where they can by taking on some of my right-handed ringing, and I fill in the rest when I can and use mallets when it’s too much. It doesn’t sound great, but the notes are there. I’m disappointed and frustrated, and feel like I’ve really let the group down.

After our last December concert, I finally get in to see my hand therapist, and begin twice-weekly torture sess-I mean, therapy sessions. I’ve been through hand therapy before, but holy crap this is brutal. The main problem is this massive mound of scar tissue that’s formed on the incision site, locking up major tendons and nerves and inhibiting joint mobility. The only cure for that is manual manipulation, or “massage”, but not the fun kind of massage. I sit there, squirming in my seat, trying not to scream, remembering to breathe (heavily and loudly), while she twists and pushes and pulls on the frozen tissue. I have stretches and manipulations to do at home in between sessions

Already, after just a few weeks, I can’t believe how much improvement I’ve made. My grip is mostly back, my mobility is much improved, and I have less tendon pain every day. Last week, she started me on strengthening exercises in addition to the passive stretches, that’s how much I’ve improved. I was excited to test my new abilities at our rehearsal, but it got canceled due to the snowstorm that blew in last Thursday. There was some debate as to whether or not we would still play our concert yesterday without rehearsing, but on Friday I got an email that we were gonna go for it.

During our warm-up, my hand is feeling good. I mean, zero pain. Holy crap, this is incredible. I keep it warm by doing stretches before we start. As we’re playing the concert, just for fun, I decide to try shelleying with my right hand.

It rings, clear and true, with no pain at all.

I can’t help myself. I bust out a big, goofy grin right in the middle of our concert.

I excitedly whisper to my cohorts on the next few pieces that they don’t need to ring my bells for me anymore. I can shelley again! After the concert, I’m flailing and bouncing around exclaiming that I can play again! Everyone else is excited too, because they know how much of a struggle this whole process has been for me.

Since the surgery, I’ve been using mundane, everyday things to track my progress. First time I could grip the steering wheel at the top instead of underhanded, first time I could adjust the car heater without multiple hand movements, first time I could turn the key in my house with one motion, first time I could pick up a full dinner plate without pain, etc. This, being able to play with two bells in my hand, is the biggest step of all because I couldn’t do that before the surgery. I was so scared at first when I was having so much trouble after the surgery that I had made a horrible mistake and would be permanently unable to play (or do many of the things that I love) again.


Maybe I’ll even be able to go back to playing the taiko drums again eventually (which I love so much and it has been so hard to be unable to play them).