Now What?

This is the 3rd time I’m participated in HAWMC. Each year it comes at a less than ideal time and by the end I can’t wait to write the last post. This year is no different. As much as I get out of blogging everyday this time I just need to be able to check this off the list and move onto the next thing.

What is the next thing?

Practically speaking, there’s a paper to write, podcasts to record, and Christmas shopping to finish (which should’ve been finished by now, because I’m one of those people who shops throughout the year to avoid the added stress).

Ideally speaking, I have a project coming soon. Just how soon? It’s at the editor’s but I’ve already seen what may well become the final product. It turns out I’m very bad at providing feedback short of ripping something, anything, to shreds.

Then there’s grad school to finish which includes a capstone that needs writing. I feels like I’m in the middle of a triathlon I couldn’t find the time to train for, after I signed up and paid the entry fee, so I kind of should do it.

All of this pretty much leaves my career up to chance, word of mouth, and pure luck. It’s not that I haven’t wanted to speak and write more in the last year. It just hasn’t happened. I’m trying to see it as a positive, to give me the time to devote to other things without having to decide what to do or overextend myself.

That doesn’t mean that my life as an advocate is going to be put on the back burner. Another degree will add another dimension to my business, to my advocacy work, at least that’s the plan anyway. HAWMC isn’t the end of the line, it’s a stop on a journey to something greater. But like I’ve said already, the month has been long enough. It’s time to move on to the other things I have on the calendar on the way to where I eventually see myself being.

However, I’m available if someone needs me.

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.

About Abandonment

One of my favorite posts from another health advocate comes from Jessica. Although the post deals with illness almost all of it can apply to living with a disability as well, probably because there’s a misconception that disability is similar to being sick.

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Read Jessica’s full post.

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.

Challenging Victories

Being an advocate is full of challenges and victories that no one should take for granted. One of the best things to remember is each one of your challenges will make a victory closer to the next person to travel the road; each one of your victories came off the shoulders of another person’s challenge.

Here’s a short list:

5 Difficulties

-A big community with very little resources that serve the whole community

-Misconceptions longer than your arm

-Undereducated medical professionals

-Lack of access

-Pushback from other advocates

5 Victories

-Being valued for what experience I do have

Being able to take part in the changing landscape of healthcare

-Finding a career

-Building genuine relationships

-Trusting people have my best interests at heart, or at the very least in mind

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.

Sunday Selfie

I’m not a fan of selfies. I prefer to be behind a camera taking pictures or have someone else that I trust behind it. I’m a fan of getting the right angle. Since the weather is getting cold I thought I’d post one of my favorite warm weather selfies.

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A CP Glossary

Being a minority of a minority people come to me all the time for advice, suggestions, etc. I know a lot about CP because I’ve sought it out, partly because people were seeing me as some sort of expert, but I’m not really. It’s hard to boil everything down to one page for the newly diagnosed when Cerebral Palsy is also unique to the individual. However, I received a comment to create a glossary for readers of terms that I often will use an acronym rather than spell out. I’m sure I’m forgetting a lot of them but here are the very basics.

Cerebral Palsy Related Terms

CP- Cerebral Palsy

GMFCS- Gross Motor Function Classification System

SDR- Selective Dorsal Rhizotomy

PT- Physical Therapy

OT- Occupational Therapy

ST- Speech Therapy

SpEd- Special Education

IEP/504- Individual Education Plan

Physiatry (or PM&R)- A specialist of non-surgical physical medicine for people who have been disabled

Orthotist- A maker/fitter of orthotics (bracing)

AFO- Ankle Foot Orthotics

KAFO- Knee Ankle Foot Orthotics

SMO- Supra Malleolar Orthosis

DAFO- Dynamic Ankle Foot Orthotics

Monoplegia- One limb effected

Hemiplegia- One side of the body, usually two limbs, are effected

Quadriplegia- Effects all four limbs of the body

Diplegia-Effects the lower body

Triplegia- Effects three limbs of the body

SLP- Speech Language Pathologist

AAC- Augmentative & Alternative Communication

Other Useful Terms

CF- Cystic Fibrosis

SB- Spina Bifida

DS- Down Syndrome

LD- Learning Disability

EDS- Ehlers–Danlos Syndrome

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.

Changing The Healthcare Landscape

Asking a professional patient to name one thing they’d like to change about the current healthcare landscape can be like pulling the pin on one big grievance grenade.

Although I would like more of a community for people over the age of 18 with Cerebral Palsy I’m going to go with something more general and seemingly smaller, but it is one of my biggest frustrations.

Office staff.

There’s the Joint Commission for healthcare organizations.

There’s standards for doctors.

And nurses.

Why not office staff?

They make offices run. They’re invaluable people.

Some know this and use this to their advantage, others don’t seem to have a clue, or maybe they just don’t care.

I’m not saying I’ve left the care of a healthcare provider because of their office staff, but I have thought about it, more than once.

I think maybe there will be a time when that will happen, it just hasn’t happened yet.

If I could change one thing about the healthcare landscape right now, it would be to have some sort of organization that handles the oversight of the assistants of healthcare providers, because although they aren’t in themselves providers they do play a major part in patient care.

They aren’t just handling files and scheduling appointments. They’re handling a person’s life, especially if it’s someone who has a disability or chronic illness.

They aren’t just dealing with annoying people. They can be the lifeline between provider and patient.

I don’t need someone who gets over involved in my care, blurring the lines of professionalism but someone who at least attempt to acknowledge that I can’t just drop everything for an appointment.

Simply put, someone who reads all the information put in front of them before scheduling an appointment (for example).

When someone is rude, or downright mean or neglectful, I wish there was someone, someplace, to report them to. It isn’t a position with minimal consequences if mistakes are made. It can’t be “just a job,” when you’re working alongside people who hold the lives of others in their own hands.

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.

3,000 Words

They say a picture is worth 1,000 words, so this post will be 3,000+ words.

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Why do these pictures illustrate my health focus? Because there are still numerous unnecessary obstacles for persons with disabilities but there are countless people trying to change that, including myself.

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.

Crazy Little Thing Called CP

I can’t tell you about the craziest thing I’ve heard, true or not, about Cerebral Palsy because there’s been so many. Also, I can pretty much guarantee that at least one of my readers has heard something far more ridiculous so I’m not even going to go there.

Instead I’ll share a few vlogs with you:

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.

 

Tip Tuesday

Although I spend a fair amount of time engaged in some fashion in social media I have mastered none of it. In fact, I find it frustrating, meaning social media itself, not the mastery itself.

I have no expertise in it whatsoever.

Instead I find people who are and pick their brains to no end.

I’ve realized I can make better use of my time (and my sanity) if I don’t try to become an expert in everything.

(I may have studied a little too much Plato in college, but it makes this make sense)

A few years ago, I attended the Catholic New Media Conference. I’d like to tell you I did it on purpose but I just got lucky. It was small, reasonably priced, and easy to travel to. I had reached a point where I needed to learn more before I got buried in the noise of the internet.

I was so overwhelmed after one day, but I knew I was in the right place for the right reason, and I knew I wasn’t done learning from this pool of talent.

I went home and did my research, and then I kept tabs on the people that gave talks, the people I remembered seeing, even the people who started following me on Tw!tter for no reason in particular.

At the most recent CNMC I came prepared. I made two mental lists the “need to” and the “want to” list.

Patrick Padley was on the “need to” list. After sending an unknown amount of emails to companies I thought would be a good match for increasing CP awareness and getting no response. I knew I wanted to pick his brain to know what I could do differently, what I could do better.

Maria Johnson was also on the “need to” list. I needed to thank her personally for her help and inspiration. She made my brain light up like a pinball machine at my first CNMC and the lights haven’t dimmed much since.

Lisa Hendy was on the “need to” and “want to” list, for reasons that are too long to list. Let’s just say if you want to see what can happen with a small venture see Catholic Mom

And lest I forget Greg Willits who ended up at the top of my “want to” list after delivering his keynote. You know how there are people that can tell you things you don’t want to hear but when you hear it it doesn’t seem that bad? I never thought I’d thank someone for telling me things I didn’t want to hear.

Basically, my advice for using social media for advocacy is this, do what you’re good at (hopefully it’s something you like too). Seek out the advice of people who are experts in the areas in which you fall short.

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.

Motivation Monday

I admire people who can live by one motto for most of, if not their entire lives. Mainly because I am not one of them. I’m the person who had seemingly random quotes posted around their dorm room, and sometimes down the hallway of their apartment.

My motto has changed, and changed often, but there’s one I keep coming back to in the last year and some.

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I like this motto for a few reasons. The first is that it’s simple, at least in understanding.

The execution can be as simple or as complicated as you want it to be.

In a way, it implies that although you can have a bad day it can be a singular thing.

There’s acknowledgement of history but greater hope for what can come.

It can be applied to short and/or long term goals.

There’s the implication that there’s just as much to be gained from the journey to reach a goal as well as the goal itself.

It reminds me that my best days are ahead of me if I want them to be and work for that ideal, no matter what others may say or think.

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.