Years In The Making

10 days ago 2 dear friends professed their perpetual vows.

I knew it was a big day but it took a few days before the enormity of it set in, to the tune of,

“I have friends married to God, Whoa!”

Then I cried for a long time.

I remember the phone call telling me that it would be the last phone call because day to day life in a convent doesn’t involve regular cross-country hour long phone calls about anything.

I remember the 1st letter filling me in about what it’s like to enter religious life with the hand written “PS” at the bottom that I read over and over again.

I remember my first retreat and saying “my best friend is a Sister” to anyone who asked me what brought me to the retreat, and hoping I’d get to see her. I remember how shocking (and equally amazing) it was to see her in her habit.

I remember leaving that retreat with more one friend who happens to be a Sister and nurturing those friendships.

I remember trekking to visiting day, when every obstacle you could imagine (and some you couldn’t) was telling me it wasn’t worth the effort. And it was SO worth it on so many levels.

I remember witnessing their profession of 1st vows in the sweltering heat thinking that there’s no place I’d rather be that day.

I’ll always remember the day they professed their perpetual vows, and wishing I could change things and keep things the same at the exact same time.

I’ll remember the end of the day when we all gathered for a picture. Only a small portion of our group of friends from college we able to attend but we were one of the biggest groups there, I think.

The children helped our smallish group practically double in size; there were SEVEN of them after all. I kept having flashbacks from my days in early childhood education, but then I realized I didn’t have to be “Miss Sarah” I could be “mom and dad’s cool friend.”

It’s been almost 10 years since I graduated from college (Lord, I feel old). We used to talk about what we all wanted to do after college and while I’m not sure all of us are exactly where they thought they’d be at this point in life (I know I’m not); we are all where we’re meant to be.

Needles, And Tape, And Meds, Oh My!

Remember when I wrote about getting Botox and trigger point injections. Well last week I went for a follow up and follow up trigger point injections.

Yes, I willing went to get stuck with needles at the full digression of a medical professional.

No, I am not insane. I promise.

So I had trigger point injections (no Botox).

It’s never the most pleasant experience but if you get the desired results it’s worth it, even this time which was highly unlike all the other clinic visits (but I’ll spare you the details).

We also talked about the possibility of changing up my meds, for muscle management since I’m finding that I’ve becoming more “loopy, droopy, and stupid” but I’m not getting much in terms of less tightness and spasms in my legs. I guess it is possible to build up a tolerance (which I could’ve guessed but I wish someone had come out & said it anyway).

The problem is every medication has its drawbacks and there’s no guarantee that any of them will work any better. In fact I wouldn’t be surprised if none of them work well for me, at all. I mean, anyone who saw me during the short time I took B@clofen calls it “the crazy stroke drug.”

A few weeks ago I got into a discussion at PT that ended with my ankle being taped up, for therapeutic purposes, so I snapped a few pictures for the appointment for a visual, because my brain is fried.

He supports the tapping since it can have really great benefits. I’m not sure how I feel about it long term but we’ll see how things go. Knowing how my body has been the last few years, who knows?

Once we figured out how long the effects of the trigger point injections lasted a plan was made and out came the needles (well needle).

Normally I go sans any anesthetic, because I’m all badass like that.

Actually it’s more like I hate cold sprays or creams and get post-anesthetic headaches like it was my job (that last part I had forgotten about until I was half way home and the car spun about 180 degrees, thankfully not literally).

And I am a badass like that.

But my doctor wanted to make sure my muscles were “jumpy” because he was in a trigger point and not because he stuck a needle in my leg. So I sucked it up and took the spray, begrudgingly.

A few minutes later it was done and I was out the door, all except for the fact that one of my socks looked like it belonged to Curt Schilling.


Apparently I was going to be a bleeder too; again, not my usual M.O, but it’s not like I can control it.

The bruising is more than usual as well but that’s always an unknown.

The plan from here is to go back in the fall for follow up and the possibility of Botox and/or Trigger Point injections then.

AFO Or No?

I don’t remember getting my first AFOs. That’s how long I’ve worn at least one AFO. I’ve had periods where I’ve been completely AFO-free (high school & college mostly) but I’ve had some kind of bracing more than I’ve not had it.

Growing up coordinating my wardrobe with my AFOs was a no-brainer. I went to a Catholic school. There were no wardrobe options, unless you wanted a uniform violation. If there was one positive to wearing a uniform this is it, although I’ve never looked at gray knee socks the same way since.

Once I was freed from my uniform I stuck to pants, jeans really, even though I was out of AFOs by then. None of my campuses were ideal for shorts, for one reason or another, and I really didn’t want to deal with another “length debate,” even if public schools are more liberal with dress codes than private schools. I felt “liberated” enough in jeans and a tank top.

I owned shorts. I just never wore them. I always had at least one pair, just in case. In case of what? I’m not exactly sure, but they were there.

A few years ago I started wearing shorts again. Again I’m not exactly sure why once I was able to safely dress myself again after having surgery. I got tired of the heat. I was past being tired of people asking why I always wore pants. I thought I looked really weird with a nicely tanned upper body and a whiter-than-snow lower body. It was all very un-swimmer of me too.

Here’s the kicker, I started wearing shorts again while I wore an AFO. All the years of being pants only were during my AFO-free years.   (I’m sure it’s not unheard of, but unusual.)

Summer is the time of year when wearing any type of footwear is difficult. Throw in needing to wear an AFO (or two) and everything that that entails, and you can probably guess why “I don’t feel like wearing shoes today” is a legitimate reason to not leave the house (or is that just me).

Those of us who are fortunate enough to be able to safely ambulate with and without an AFO, even though we do (or at least should) wear one are presented with something of a unique challenge.

“To AFO or not to AFO?”

I tend to wear my AFO in unfamiliar situations or situations where it may get lost. I also wear it when I know I’ll get tired or need the extra stability. I don’t usually wear it all day long, unless I have to for some reason, because I tend to “flex/tone” out of it. I usually end up with a pretty obvious strap mark across my foot after a day of heavy wear (another reason why a wheelchair is often a smarter option).

Being that I wear a to-the-knee (or is it a below the knee) AFO on one side and an orthotic (like a shoe insert) I struggled on how to handle the socks issue. Call me vain if you wish.

I decided against wearing short socks under my AFO early on. It’s also been drilled into my head that it’s a big “no-no” in regards to skin health. Sweaty skin covered in plastic isn’t good, not to mention gross. Plus I tend to sweat a lot (in my opinion) so subjecting myself to conditions that could produce more sweat, no thanks.

I thought I’d end up wearing knee socks with shorts. I mean, I wear them almost every day anyway so it made the most sense, for 5 minutes. Have you ever seen adult knee socks? They’re either really lame or really cool, but neither case is ideal for summer wear. Also many of them are fairly thick and that brings us back to the sweat issue. I can’t afford those fancy pants socks that reduce moisture, or whatever, and even if I could afford them, they’re socks, not something I want to spend a lot of money on. Some people can afford it and want to, whatever works for you.

Also are knee socks fashionable these days? I want to say no, since you don’t see an explosion of knee sock fashion.

As funny as I thought it looked (and still do, to be honest), I settled on a short/knee sock combo. It’s not for everyone, but it’s what works best for me. Plus I can usually get two pairs (or two uses) out of one pair of ankle length socks (so I didn’t need to do more shopping!).

If you were AFOs (or one) how do you handle AFO related issues, like socks or “to wear or not to wear”, or anything else? Do you have any AFO related questions? Don’t be shy.

*A similar version of this post was written on July 15, 2014

The Catholic Thing

“You and I are very much alike, except for the Catholic thing, and the Cerebral Palsy thing.”

You know how you sometimes wonder if some people bother to think before they speak? I wonder the same thing about written comments too (much like the one above).

It’s one of those “um, thank you?” moments, for sure.

You all have those, right? Just me?

I don’t really consider myself to be a Catholic blogger. I am Catholic and I am working towards a master’s degree from a Catholic institution (which also functions as a seminary), so lines are bound to get blurred on occasion.

But if you come to this blog for a greater understanding of teachings of the Catholic Church you’ve come to the wrong place. Go see Greg & Jennifer or Mac & Katherine for that. Actually even if I were a highly faithful Catholic you’d still have better luck with Greg, Jennifer, Mac, Katherine, or any other host of people on the planet.

I don’t consider myself to be a CP blogger either but I think that’s a better fit, if I had to pick one, since that’s how people first started to find me and everything.

Regardless I dislike when someone who doesn’t know me calls an important part of me “a thing.” Fiends who can tell I’m going through a phase before I’ve realized it’s a phase or “a thing” another thing.

“The Catholic Thing” isn’t a thing to me. It’s my life, at least now it is. That wasn’t always the case but now it is, and “carpe diem,” as they say.

Call me oversensitive but I get offended when anyone calls any faith tradition a thing. It’s probably not meant to be an insult, but usually comes off as one. Like saying someone is too pretty to be disabled. Sounds like a compliment, but it isn’t.

Speaking of Catholicism directly, I know it’s an easy target. However that doesn’t mean you need to hit it, or try to. I also know there’s still a level of shame associated with being Catholic for some people. I can’t say I blame them, and sometimes I am one of them.

It’s not something I’m ashamed of however it’s much disclosure of disability to me. The approach effects how I craft my answer. If I can tell you’re going to bash me for it, or craft an insult wrapped in a shallow compliment then I have no patience.

Diplomacy is not my spiritual gift, and no, I don’t care to “work on that.”

I am not the one to come to for calm theological discussion if you’re not going to give me the same curtesy. If you’re looking for that type of discussion go to someone else.

It is possible to support and belong to a belief system and not completely agree with the human organization that handles the business end of things; I know because I’ve done it most of my adult life.

If you think we’re alike in some way, don’t start out by pointing out the differences. You’re making a point. But is it really the point you want to make?

*A similar version of this post was written on October 8, 2014