Spreading The Love

When you first start writing seriously you tend to look for others in your situation, or at least that’s what I did. When you don’t find any, or at least what you were looking for, you start looking at other health blogs for a “similar enough” community to try to emulate.

I found myself reading a lot of CF blogs, and learning a lot from them. I didn’t find everything missing from the CP community that I had been looking for but close enough. I wanted to connect with people in the CF community to see what I could learn and bring to the CP community.

For example: the issue(s) of transitioning from pediatric to adult care since CP & CF are both lifelong conditions that involve transitions.

It didn’t take long before I found Run Sickboy Run. It seemed like every CF blog mentioned Ronnie at least once. Clearly he was good at whatever he was doing.

I’ve been able to learn a lot about self-advocacy as well as blogging in general from Ronnie. If I can have a quarter of the impact on the CP community that Ronnie’s had on the CF community than I’ll consider it a success; because I don’t think I can even come close to what he’s done (like creating a social network for the CF community).

He’s also been kind enough to respond to my comments for him & leave his own for me. It’s truly something that makes a small time blogger happy. He’s also been nice enough to share his knowledge with me when one of my doctors brought up the possibility pulmonary function testing.

It’s from getting to know Ronnie though his blog (& guest posts by other CF patients) that I’ve found the type of community that people with CP should be a part of. In fact I’ve been suggesting to the professions since I started reading CF blogs that we should look to the CF community as a model for medical treatment; and believe it or not someone brought up the same idea at a CP conference.

Simply put, thanks Ronnie for all you do.

There are two other individuals I have gotten to know that blend health activism and everyday life well:

Jessica at Fashionably Ill & Sarah at Back To Carolina

They both show that professional patients are just normal people who just probably more familiar with their doctors.

*A similar version of this post was written on April 14, 2013

I’m participating in WEGO Health’s Health Activist Writer’s Month Challenge. If you want to find out more about Health Activist Writer’s Month Challenge visit their blog, Facebook, Twitter. You can find more posts by searching #HAWMC.



Disability & Body Image

Body image is a big issue and so is disability so disability and body image is a big(ger) issue. I’ve watched a few videos related to the “body image tag” from Robyn, Annie, and Gabby in particular, and it got me thinking (not enough to start a Y0uTube channel mind you). Here are my thoughts, in the hopes that maybe it’ll help someone in some way.

1) Do you think you are “traditionally/mainstream” attractive? Does it matter to you?

I don’t think I’m “traditionally/mainstream” attractive for a few reasons but the one I’d like to mention is because I have a disability. Mainstream society, thanks in big part to the media, doesn’t find disability traditionally attractive. So no I’m not traditionally attractive, but there is “a lid for every pot,” as they say, so I’m attractive to someone (hopefully not in that devotee way).

It doesn’t matter to me that I’m not traditionally attractive. I’ve put too much work into my body to make it functionally and “workable” for myself, but I’d be lying if I didn’t say I sometimes care, even slightly. What matters more to me is the devotee issue. From my experience I struggle with people finding me attractive without some sort of fetish attached to it

2) What was your biggest insecurity when you were a teenager? What is it now? How has your body image changed?

My biggest insecurity as a teenager was that people would notice that I was disabled. In hindsight it seems pretty ridiculous since it’s obvious that I have a disability. I wasn’t big on using mobility aids as a teenager because I wanted to blend in, plus I didn’t think I needed them.

My biggest insecurity is wondering if people are looking at me and why.  I know people look at me. It’s so commonplace in my life now that I hardly notice it but when I do I wonder why they’re looking at me. Are they shocked? Inspired? Unimpressed?

My body image has changed a lot especially in the last few years and it has a lot to do with my last surgery. I know most people think/feel that your self-image should be tied to an event or something else and I used to say the same thing. Then I turned 30 and things became solidified even more. I’ve come to appreciate what my body has become and the work I put into it. I’ve also come to accept that I’m probably not anyone’s idea of “perfect” but I am who I am take it or leave it.

3) How does your style play into your body image?

Style does play a part in my body image. I try to put some effort into my style knowing that in a way how I portray myself will impact how someone else will view people with disabilities. I don’t spend hours getting ready every day but I do make sure my clothes match and are suitable for whatever I have planned that day. Also when I feel like I look good I tend to tend to be in a better mood.

4) How do you define your beauty?

Is it bad that this is the hardest question for me to answer? I know I’m not obviously beautiful and I’m totally fine with that. But it’s not like I can point to one thing and tell you that’s what makes me beautiful either, probably because it depends on the day. I do have this odd sense of satisfaction of seeing a good photograph and realizing I’m either in it or I took it.

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