Hindsight Is 20/20

You learn a lot being a professional patient. You learn more terminology and technology than your peers. You also learn what people don’t know. It’s often shocking how much medical professions don’t know.

You don’t expect one person to have all the answers but you expect them to know someone who knows what they don’t know. So it’s always surprising when no one knows the answer. It’s even more surprising when no one seems to want to do anything to help you.

I admit I was naive to the fact that Cerebral Palsy is indeed a lifelong condition that needs to be managed and monitored, even in the mildest of cases. It wasn’t until I was faced with a decline in function & chronic pain that I began to deal with reality.

I knew I was always going to have Cerebral Palsy. A cure was not in my future, not that I would take it. What I didn’t realize was that I’m really not like everyone else, although I am more alike than different. What I mean is I’m different enough that I can’t be just like everyone else, at least not anymore.

When I did seek help I was shocked at how little help I got; wasn’t refusing to treat someone and not offering leads going against, “first do no harm?” Apparently not.

Never mind some of the reasoning I got for not wanting to treat me, after making me wait for hours and charging me for the visit mind you (I’d rather be turned away on the phone while making the appointment). Let’s just say nothing makes you feel old (in a bad way) like people bringing up your age all the time.

I’m still surprised at the self-advocating I’d have to do (and still do) in order to get adequate medical care. And that’s with the hope that I’m able to find something somewhere. I’m all set now, as far as I know, but I can’t speak for the future.

Needless to say I think I’ve done enough internet research on my own to get a Ph.D. in “patient-heal-thy-self”-ology. I’m also a medical resident’s worst nightmare, but I think I was that even before I started researching on my own, now I just have the information to back up my theories.

I’m learning that the future for adults with Cerebral Palsy is largely unwritten, which has good and bad points to it. There are currently no long term studies on individuals over 18 who have Cerebral Palsy. There aren’t even enough adequate health care providers, so how can there be studies.

I wish I knew at 20 what I now know (or sooner); although I’m still not sure I would change anything. I should’ve paid attention when I didn’t have to fight so hard to get attention. I should’ve asked the questions I thought were stupid and didn’t ask. I should’ve asked any question at all. I shouldn’t have told myself, “I’ll worry about that later,” because “later” came a lot sooner than I expected it to. I should’ve taken my health more seriously when the professionals did. Then maybe we wouldn’t have to work so hard to be on the same page today.

I think I will always be surprised that there’s still so much work to be done in the 21st century, and how much has been left unchanged, for a condition that was discovered in 1860.

I’m taking part in The Health Activist Writer’s Month Challenge this month (also known as #HAWMC).

*A similar version of this post was written on April 12, 2013

The Reviews Are In

Today is supposed to be a review of my favorite health related product. But there’s the thing, I’m awful at giving reviews. There’s no one good product for people with CP, and if there are they haven’t worked for me so I can’t give them a good review.

My review isn’t going to be CP specific and barely healthcare related but it is a product I love so I’m sharing it.

When my mysterious muscle strain was first diagnosed I was sent to my orthotists’ office to see if there were any bracing options available to take the load of my quads to allow the strained one to heal.

They had good news and bad news. Good news, there were a few options. Bad news, none of them would work well for me.

One of the orotists suggested that I go swimming because that would work better than any bracing so I did. It hasn’t helped my quad much but I reconnected with my love of swimming, big time.

I was making progress pretty quickly but not enough for my taste (of course) so I looked into training aids. I’d been pretty interested in a pull buoy but I had never used one before and had never seen someone use one either.

So I went to the internet

It’s pretty much what I was looking for. Now I know what you’re thinking, how are you supposed to strengthen your legs if you aren’t using them?

My legs aren’t going to be able to propel me at the same rate as my arms over night and I do use my arms more than my legs for just about everything, not just swimming, so it’s important that I have good form and technique for what I can and do use.

A pull buoy allows this to happen.

Except I don’t use a typical pull buoy.

I found a pull buoy with a strap attached so my legs don’t go floating everywhere or squeezing my legs together too tightly.

It’s a bigger and costs more than the typical pull buoy and it can be a pain to pack but it’s really helped my swimming. I can’t believe I went so long without using one.

I’m taking part in The Health Activist Writer’s Month Challenge this month (also known as #HAWMC).

H.E.A.L.T.H.

I’m supposed to use the acronym H.E.A.L.T.H. and come up with words that that represent my health activist journey.

At least it doesn’t have to be poetry.

H. eavy

E. nlightening

A. ggravating

L. ong winded

T. ough

H. appy

I’m taking part in The Health Activist Writer’s Month Challenge this month (also known as #HAWMC).

Hit The Road Jack

One of the most common questions I get asked by parents of disabled kids is how do I make friends when you have CP (or other disability). The question has always puzzled me. I could ask able-bodied people the same question since I don’t have experience in that department.

I’m a big believer in quality over quantity when it comes to relationships.

I’m like this for a few reasons:

*My family is so big I have little head space for other people.

*I’m an introvert when it comes to friendships, too many and my brain just freezes up.

*When you have a disability you get a fair number of “pity friends,” that is people who want to be your friend because of the credit they get from it “you’re such a good friend” etc

*When you have a disability or other health issues people tend to run off when things aren’t the greatest and then come back as if nothing ever happened.

Recently Sarah put similar feelings into a tweet

So what do I do when people get hurtful and misunderstanding of my situation.

I let them go.

I used to get bothered when people would promise things and then not follow through. Through the years I’ve learned that not every friend is meant to be the type of friend to show up in your hospital room just to be there, even if you’re sleeping. Not every friend is meant to call the surgical waiting room from another country just to find out how things are going during a daylong surgery. Those types of friends are rare. Hold onto those friends, although it probably won’t be that big of an issue.

There are those well-meaning friends who promise they’ll call and/or stop by and then don’t. These are the friends who bother me the most, yet I still have some. Whenever they promise something I know they won’t follow through on I call them out on it, as nicely as possible. Most get upset for telling them to not bother because I know they’ll be too busy (and you think they’d want to prove me wrong) but they never follow through. If it wasn’t for those few shining moments of their friendships I’d kick them to the curb with the rest of them.

I don’t feel the need to say anything to anyone anymore about their actions. If they don’t realize the damage they’re causing to others than they’re not going to understand what you’re talking about when you bring it to their attention (and most will be offended which will only piss you off more).

Are their times when I want to say something? Of course, but I rarely do. It’s only caused me more stress and aggravation when I do (because people are stupid) and I have too much on my plate to have pointless arguments. I just the friendship fizzle out if it’s meant to.

Although there are times when I tell people to take a hike, and it works out for the best in the long run, whether people realize it or not.

I’m taking part in The Health Activist Writer’s Month Challenge this month (also known as #HAWMC).

Have A Good Day

What are 5 tips I have for turning a bad day (or not so good day) into a good day?

Um

1.       NetFl!x. Nothing better than a good binge watch of anything and everything you can get your hands on. This is more of a lay low and wallow technique but it can also turn a bad day into a good day, because if you’re anything like me sometimes you just have to turn a bad day into a chill out day.

2.       Don’t keep your bad day to yourself. I’m not implying that you should spread your bad day around but be honest with people and tell them you’re having a bad day (especially if you work in close quarters with people). That way they can try to help you avoid other bad day triggers that’ll just make things worse.

3.       Time management. I’m the worst at managing my own time, but if you give me a group to organize I become so type-A people want to have me committed. Most of the time when I’m having a bad day it’s a result of slacking time management. I can’t fix all of my mistakes in one day but I can often make myself feel better if I take a day, or the portion of a day, and take care of something that needs to get done.

4.       Venting. This is different than #2. Whenever I’m having a really bad day I usually call a cousin or close friend when I’m at my wits end and just vent. Usually what happens it whoever I’m talking to can make me see how ridiculous the situation it and makes me laugh about it.

5.       Remembering tomorrow will probably be better. Not to get all Scarlett O’Hara (or Annie) on people but tomorrow is another day and if you think of it like “tomorrow can’t get any worse than this” then the next day will be better than the day before.

What do you do to turn a bad day around?

I’m taking part in The Health Activist Writer’s Month Challenge this month (also known as #HAWMC).

Word Cloud

Wordle: CP
(click to enlarge)

I’m taking part in The Health Activist Writer’s Month Challenge this month (also known as #HAWMC).
*A similar version of this post was written on April 17, 2013

Fitness Friday

I’m going to let you in on a not so secret secret.

I’m awful when it comes to personal accountability. Unless it has a deadline with consequences it’s not going to happen.

It’s important for people with CP to stretch consistently to decrease spasms and maintain flexibility. I’ve NEVER stretched myself. Any stretching done is done at the gym with the assistance of a trainer now. Before that was by a PT during an appointment or in the hospital.

I know it’s not the best thing for me to not do for myself but “old habits die hard, as they say.”

I’ve gotten better at trying to take care of myself.

I know what I just won’t do, no matter how many lectures I get, so I try and find ways to work around it.

I’ve even gone as far as telling a doctor, PT, etc., that I know I won’t do what they’re suggesting, (no matter how good my intentions are) so they should come up with something else.

The majority don’t typically like this conversation. Isn’t honesty the best policy?

I could probably carry out an exercise routine without a trainer but I know I won’t bother so I keep working with a trainer. Having an appointment stops the “I’ll go later” (and then never going) way of exercising. If I have an appointment I know someone is expecting me to show up.

I typically go to the gym or PT 2-3 times a week for about a half an hour to hour for each session.

The routine gets changed up often to ward off boredom and account for my issues on any given day, like quad strain.

I typically want to go about half of the time.

At least I’m going.

I do feel better than I did when I was consistently exercising , just not enough to have additional motivation (No workout highs happen here, ever).

I wouldn’t say I feel worse if I don’t go to the gym for a while, because when I haven’t gone just getting there would’ve made me feel worse (extreme weather) or I’ve been in such different environments that just being where I was made me feel better than going to the gym by default.

Going back to the gym after some time off is another (somewhat sore) story however.

As for workout advice? Don’t follow my example.

I’m taking part in The Health Activist Writer’s Month Challenge this month (also known as #HAWMC).

*A similar version of this post was written on April 25, 2014

Free Swim

I can write about anything I want today.

I’ve been talking about advocacy a lot lately, obviously since it’s Health Activist Writers Month Challenge. But I’m finding it to be a strange experience. It’s not that I don’t like talking about it. It’s kind of like talking in the third person when it doesn’t exactly fit the situation.

Why am I an advocate?
-Because there’s a void and someone needed to fill it (or in my case try to fill it).

Do I like being an advocate?
-It depends on the day.

Did I set out to be an advocate?
-No. In fact I’ve done everything in my power to avoid it for years.

But here I am anyway.

Here’s what nobody tells you about advocacy, there are no rules.

Normally I really go for the “only rule is no rules” idea but advocacy one of those extenuating circumstances.

When you put yourself out there as an advocate you open yourself up to a lot. You’re trying to make a difference, and hopefully make the world a better place. However it’s not always a fun and positive experience. There’s always going to be someone(s) out there who wants to tear you down.

The best of intentions can also be dissolved in a heartbeat.

One of the biggest downsides of digital communication is inability to decipher tone. It creates a problem when sarcasm is one of your best traits. Have you ever been told to not use sarcasm in email? The same goes for blogging (or any other online medium) for the most part.
But it’s not the only downside.

It’s hard to put yourself out there as an expert when you feel like anything but. It’s even harder when people see you as an expert. There’s pressure to get it “right.” I don’t want to mislead people.

I’m an advocate, not an expert. Most advocates are in the same boat. But the lines can, and do, get blurred, and that’s really where things get tricky. If things don’t go as you “promised” then there’s backlash. Backlash hurts, and it hurts a lot of people.

There are lots of downsides to advocacy (but there are lots of upsides too).

Will I stop my advocacy pursuits?
-Hell no, but I wouldn’t turn down any supporters.

I never wanted to be an advocate and I don’t want to be even today. But someone needs to stand up (even if it’s sometimes figurative) and say what needs to be said, no matter how reluctant you are.

Are you a reluctant advocate?

I’m taking part in The Health Activist Writer’s Month Challenge this month (also known as #HAWMC).

*A similar version of this post was written on May 1, 2014

Hobbies In The Lobby

Today’s topic is hobbies.

However I don’t have much going on these days in terms of hobbies so I had to hop in the way-back machine and see if I’ve ever written about any hobbies before. Thank God I have, or else this would’ve been a fairly short post.

I don’t have as much time to indulge in hobbies these days however I have had more than my share thanks to lots of “down time” recovering from surgeries.

Typically I go for anything that I can do with my hands if I’m antsy. My room is littered with projects in various stages of progress. Every once and a while I’d pick of a sport like horseback riding and swimming, of course. The garage has been pretty well cleaned out of the rest of my sports related activities (thank God).

A sure sign of post-op boredom for me wanting to wonder around the craft store and see what I can come up with. It usually ends up me spending at least $30 on stuff I wouldn’t have purchased it I wasn’t under the influence of the deep recesses of my own head (and the occasional painkiller).

It drives my family nuts, but they put up with the lunacy for a little while. It drives me nuts when it comes time to clean it all up after realizing that it won’t just disappear.

I was an amateur photographer for a while. I was one of the founding members of the photography club in middle school, because being the proverbial new kid and band geek just wasn’t enough.

I got into painting in high school. I was one of a handful of students that were featured in the school’s first student organized art show. Why yes, I was one of the student organizers too.

I was into collages and arts and craft kit type things for a little, but that quickly came and went. There’s actually none of that hanging around (a pretty definitive sign that none of that has lingered).

I’d love to sit down with a non-school related book and read but I’m afraid that that would quickly turn into nap time, not that there’s anything wrong with that.

Any free time I have for hobbies gets delegated to a movie, backlog of TV shows, or letter writing. It’s not very sophisticated or exciting but it’s me.

I’m taking part in The Health Activist Writer’s Month Challenge this month (also known as #HAWMC).

*A similar version of this post was written on April 22, 2014

Reflection On Activism

My journey to activism has been interesting. Honestly it started on a whim, because someone asked me to join her on a panel. Being an activist was for other people, not me. After all, what could I offer that someone else couldn’t?

Apparently I underestimated myself and the CP community. When I looked for someone with a story like mine all I found was mine, and even that wasn’t out there.

When I put my story out there I did it slowly since I had no model for it. In fact I didn’t talk about my diagnosis during the first few years I maintained a blog. I’m not sure why I did that looking back on it now. I do remember thinking that I shouldn’t bring it up right away, although I can’t remember why I thought that.

I’ve said before, but it needs repeating, that I wish the CP community was more of a community than it is now. I wish there wasn’t the massive divide between parents of CP kids and people with CP. It’s practically like there are two different communities, at least that’s what I think.

For a disability (health issue) to be around as long as CP has and not have a strong community is still confusing to me. I’ve said it before, and I’ll say it again, we could really learn a lot from the CF community (as just one example).

I never would’ve thought I could make a career out of disability awareness and activism but I have. It’s been interesting and surprising for sure. I’m still surprised when I get a request to come speak and/or write an article.

I always wondered how people “got into” the public speaking business and now I know of at least one way, although I’m almost positive my journey isn’t the norm.

Who goes from a panel discussion straight to breakout sessions at conferences? Again, just one example.

My biggest (and probably very unrealistic) hope is that someday I won’t have to be an activist/advocate in the future. I’d like to think that eventually we won’t need to be so on guard to advocate for full inclusion of the disability community into able-bodied society. It’s a Hail Mary of a goal but it is what it is.

I’m taking part in The Health Activist Writer’s Month Challenge this month (also known as #HAWMC).