On Change

I’ve been trying to write something for more than a week. You’ve been there, right?

If you haven’t, lie to me.

May has been a challenging month. It went from being, “If I can just make it though these next few weeks” to “If I can just make it though this month.”

For those of you familiar with the spoon theory; I am out of spoons, almost.

I’m not sure where or when it started. At this point it doesn’t matter much. Life happens.

May (and a portion of April) has involved a lot of change. I have a love/hate relationship with change. It’s nice to break from the usual but the usual is the usual for a reason, because it works.

I’ve been thinking a lot about change. It’s a common topic of my life these days. I use to think I could handle change pretty easily, sure there were rough moments but they were manageable. And it was only one thing happening at once, usually.

These days every change seems to be followed by another, if not preceding another. It’s a lot. When I found myself “escaping” to my day job I discovered my “fill line” for change.

I keep telling friends and family that I feel things changing, and I wonder if they’re for the better, for the worse, or just time for it. My brain has been going through a category phase. It needs to categorize as much as it can as quickly as it can.

The thing that’s bothering me about all of this change, I think, is that 99% isn’t under my control, I chose very little of it. Change is exciting when you choose it or when you choose to accept it. I’ve had to figure out where I fit, if at all, in all of it. It’s not a fun process.

Change has a ripple effect. Even if you’re not the one changing the change can still affect you; hence the reason why I’ve had to figure out where I fit in constantly changing interpersonal dynamics with those around me.

To make matters worse, or at least it felt like it at the time, an opportunity presented itself that I wanted to take. It just wasn’t as easy as I thought it would be.

I had to write an essay. But it just wasn’t just an essay. It had to be a personal statement.

In an effort to lesson my mental anguish at the process people asked if I had something already written that I could just update. Under the advice of a high school teacher I’ve kept everything I’ve ever written, mostly, even notes. So it wasn’t out of the realm of possibility that I had a personal statement somewhere, or something I could turn into one.

I did the math, for filing purposes, at least at first. The last time I wrote an essay, of any kind, was ’07 (ironically April).

A lot has changed since then. I’m not a completely different person than I was back then but a lot has changed. None of those most “recent” essays would do.

Change happens. How you handle it is where the real change(s) seem to occur.

In the meantime, does anyone out there have any extra spoons?

*A similar version of this post was written on May 30, 2013

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Maybe I’m Not An Expert

With March coming to a close so goes my blogging blitz. It never ends up how I think it’s going to and this year was no exception.

I feel like this year was different than the others, for a few reasons, less facts, more stories, for one thing, or is that two?

There were topics I wanted to write about but never got around to or have already written about. When I came up short I dove into my archives, probably more than I wanted to, but it worked. I think?

I’ll get to more stories later on, possibly when the timing is better.

One thing that kept getting my attention this year was the focus on children and the desire to treat, if not cure Cerebral Palsy as soon as possible.

This isn’t new by any means, but it seems to be gaining more attention for whatever reason.

In a way my focus this past month has been more personal because it’s how I’ve grown into adulthood and the different phases of life that people, CP or no CP, find themselves in.

Not every aspect of life comes with statistics, and even those that do come with outliers.

So, for now, and probably in the future, I leave you with more stories than statistics because you can find statistics somewhere else.

Life as an adult with CP is an oddity, a misconception which I brush up against every day, so although Cerebral Palsy Awareness month is over that doesn’t mean my efforts are over, at least not completely.

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All Cerebral Palsy related posts

Not All Pain Is The Same

Chronic Pain effects roughly 3 out of every 4 people with Cerebral Palsy. I’ve written about it before, because I am 1 of the 3 out of 4, and I get questions about it a lot.

I have a long relationship with pain, so long I’m not sure when it began. However, it’s changed over the last few years.

I’ve learned that not all pain is the same.

The pain I feel at the end of practice, a swim meet, or even just one race, is drastically different than chronic pain.

That pain, although usually more intense, fades away.

Chronic pain stays around for the long haul, it may fade, but it never goes away completely.

When I first started going to coached practices I was happy that my pain seemed to disappear as soon as I was focused enough on the task at hand, swimming, keeping my body afloat, while trying not to collide with another swimmer in the lane.

When I changed coaches and adapted a more intense training schedule I focused on the same task, especially since I was now sharing a lane with more than one person, and not wearing prescription goggles. But I also had to learn what a “real” workout involved.

Like, a good workout leaves you sore but able to function the next morning.

Some days it works out better than others, and there have been a few injuries along the way, both swimming and non-swimming related.

Chronic pain, still have the ability to leave me unable to function, but those days have been getting fewer and further between, thank goodness.

I’ve had people ask me if I was possibly worried that I would push myself too hard because I have chronic pain. To be honest I’m not sure what they think when they ask that question, but my answer has always been no.

I know what pain is, I can pretty much tell when I’ve had enough, and when I can’t my body tells me soon enough, a bruised scapula retaught me that lesson, and I won’t forget it anytime soon.

The truth is I take things too easily, at least at times, because the pain that I feel in the moment feels like it may be permanent, and I don’t want it to become permanent. It’s not until the discomfort subsides that I realize I could’ve done better, that I should’ve done better.

Sometimes I beat myself up about it, but most of the time I resolve to do better, or at least try to do better next time.

I may seem like an expert in dealing with chronic pain, but the truth is I’m still learning that not all pain is the same, even when most of it is chronic.

Hide & Seek

Despite having Cerebral Palsy for 30+ years I’m still learning about it, it’s effects on me, and how it affects others.

 

I could go in-depth as to why I think that’s the case but that’s probably a topic for another day (before I put my foot in my mouth) but the short version is that there’s little research on people with CP over the age of 18.

Cerebral Palsy effects how the brain communicates with muscles so there’s a misconception that it’s a muscular disorder.

It’s easy to do when the majority of Cerebral Palsy related surgeries deal with bones and muscles.

But a lot of the largely unknown aspects of living with CP have to do with the nervous system.

There’s a startle reflex.

Chronic Pain.

Temporary, yet extreme pain, like a kidney stone.

Side effects from medications.

Trying to do two things at once that requires different areas of your brain, like getting dressed and holding a conversation.

If it has the potential to cause any neurological issues for a person with a normal nervous system there’s a pretty good chance that it’s going to cause issues for someone with CP.

 

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.

Please Get Out Of My Kitchen

I was supposed to write an open letter to my worst (or best) healthcare provider but I’m going to do something a little different for two reasons (1) it’s been an interesting few weeks with my and various provider offices and (2) I can’t find the post I thought I had already written on the subject.

Instead I kept coming across a different post that expresses a similar sentiment but better than I could have done in letter form (at least that’s what I think).

I wrote this after yet another appointment that left me frustrated and defeated. I was also somewhat younger than I am now, yet I don’t think I would’ve done a thing differently if I was in the same situation now (although I don’t think I would’ve had the choice either).

I was still months away from one of the biggest days of my life (so far) after waiting months to just to get to the point where I was months away from one of the biggest days of my life. It wouldn’t be an understatement to say that the waiting had pretty much consumed my life.

Looking back on this, since I have a lot of it in writing, I can’t believe I actually lived through this, and I mean that literally. You know the saying, “when you get to the end of your rope tie a knot and hang on”? The knot was getting loose.
____________________________

Technically I’m still under the care of two surgeons and technically two will be performing my surgery, but I haven’t met that second guy yet. Although I do consider one mine and the other just an extra opinion, and no I won’t say who is who, mamma didn’t raise no dummy.

Plans for surgery are still full speed ahead, although not necessarily very quickly.

Even though the plan hasn’t changed I still have plenty of time to get more opinions on the subject, whether I like them or not.

I recently went back to the surgeon that wanted a lock strap put on my AFO because he thought it would help my crouch, just to see how I would like it (I hated it, and so did everyone else, except him). We had an interesting discussion. Now he says he would do surgery, but not to the extent I’m planning on. He told me it’s basically my decision, but he would only do surgery on my right side, because the left side doesn’t look bad to him (even though test/studies say otherwise).

He also expressed concern about my age (AGAIN!). In case any of you are wondering 25 in the CP world is pretty much the equivalent of retirement to a nursing home.

How the conversation usually goes:

“You’re not a kid anymore.”

“I know.”

How I’d like the conversation to go:

“You’re not a kid anymore.”

“I know I’m not a spring chicken, but can we please get past that.”

“Sure.”

Is that so hard?

At least Dr. who-I-hope-will-do-my-surgery-says, “You’re older than the oldest patients that have had this, but only a little.”

O.K. not the most positive thing, but still more positive than what I usually hear from other doctors. I’ve also heard, “I’d like to help you, but I don’t see anyone over fourteen,” of course this was after I’d been in his office for over an hour. Nice right?
(Although I do like the guy so if you’re in the area and need an orthopod for your kid let me know)

Dr. “You-know-you’re-not-a-kid” also expressed concern that it would be a long recovery and the surgery itself would be fun for him to do but rather painful for me. (Because I wouldn’t think of such things on my own, and I haven’t thought of that for months) He also said I’d be “stuck here” for a while so if I wanted to go away again that would be out of the question. Recovery would be twice as long, 12 months instead of 6. He finished with, “If you do this, this will probably be it for you.”

I don’t think I need to go into how much is wrong with those statements from my point of few, but I want to anyway.

1) I’m already in constant pain so intensifying it for a while is worth is if there’s even a chance I could be in less pain, or pain free, once recovered.

2) I’ve thought about how hard and painful recovery is going to be. I’m not stupid, Nor am I afraid of pain, surgery, or intensive PT. I’ve done it before and I can do it again. I retained my entire body to do things people take for granted at 3. I think I can handle it at 25.

3) I want to do this so I have a chance at going away again, and hopefully out of the country at that. I’d rather be “stuck here” for a while instead of “stuck in a wheelchair” in five years.

4) I feel so bad now there a good chance I’ll feel better sooner than a full recovery of 12 months. There’s a reason why it’s a projected 12 months and not a definite 12 months. He of all people should know since I recovered faster from my last surgery faster than he anticipated.

5) Let’s let advances in medical science and I decide what’s “it” for me, thanks.

But it’s in my head now, should I just have surgery on my right side? The right needs more work anyway. I might just end up needing to have the same thing done on the left anyway. Should I take the risk of less?

My first instinct is to just have it all done at once and rebuild. It makes more sense and I’d rather do everything so we don’t need to go back and fix what we should have the first time. But now the other thought is there.

In addition to this new opinion, or rather changed opinion (?). I still have to get a second opinion, at the request of the surgeon who I’d like to perform my surgery. So I have one more opinion coming my way, at least.

I’m slowly coming to terms with the fact that my surgery is scheduled for fall. Actually I might even be starting to see this as the best thing. I realized I don’t want to be in the hospital in the summer, either type of hospital. I don’t want to be home on the couch without having the option to go out and enjoy the weather either. So if you remove the summer months from the calendar, that makes the time frame more manageable. Granted my thought process might chance in 5 minutes, as it usually done.

Have you ever heard the saying, “Too many cooks in the kitchen?” I’ve officially reached the point where I have too many cooks, and I’m the kitchen.

I have just one thing to say GET. OUT. & SHUT. UP.

*A similar version of this post was written on March 20, 2009

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.

Inspiration & The Saints

Finding inspiration in the Saints can be great, but it can be a real downer.

For a long time I was turned off to the Saints, mainly because people kept comparing me to people I knew I had nothing in common with.

Example: Persons with disabilities are not always frail and plagued with poor health (as so many of the Saints were, for some reason) so in that context its apples and oranges.

And lest we forget the seemingly endless questions about whether I’ve been to Lourdes and do I ever plan on going to receive healing.

(No & HELL NO, in case you were wondering)

I’m not saying that it’s impossible for people to find inspiration from the saints. If I said that I’d be pretty naïve. What I am saying is that people tend to think others look to the Saints more than they actually do, in my opinion. Or for different reasons than others may think.

One of the biggest issues I have with “Saintly comparisons” is during hospital stays and/or bouts of extreme pain. I understand the need for comfort but you need to look at it from another angle, when you’re that miserable being compared to other people doesn’t help matters. It makes you feel like you’re not being a good person just because you’re not handling your hardships as well as someone else.

Comparisons like that don’t really validate a person’s situation in the moment, which means so much more.

Can it help some people? Yes. But from my experience those instances are few and far between.

Plus you’re talking to a person who is alive (and possibly wishing they were dead) telling them about someone who died probably hundreds of years ago; two completely different contexts that you’re trying to compare in an effort to inspire.

It doesn’t work more often than it does work.

Where am I going with this potentially senseless rambling? It’s OK to find inspiration in the Saints; in fact I’d encourage it, for you. But tread lightly when it comes to finding saintly inspiration for others.

The Road To Recovery

More than a few years ago, and at the same time it feels like last week, I was lying in a hospital bed recovering from surgery (actually I thought I was dying but that’s a minor point at this point).

I was just beginning my road to recovery.

And having to answer the question, “Did it work” or “was it successful,” for those of your in the healthcare field.

I have to be honest. I’m never sure how to answer this question, especially since a lingering quad strain came into the picture.

Did it work? Yes.

Was it successful? Yes.

All major goals were met and there have been no complications as direct result of the surgery.

But did I get everything I wanted out of the recovery process? No.

I was warned that one of the outcomes of surgery would be uncovering weaknesses that were, in a sense, hidden by my miserable malalignment (yes that is indeed an actual medical diagnosis) and boy were they right.

Sometimes I feel like I have monoplegia instead of diplegia. Which you think would be a good thing but it’s more like my right leg feels more like an added after the fact limb (maybe like a prosthetic?).

Sometimes I feel like I have hemiplegia, because my arm is hell bent, sometimes literally, on trying to compensate for my leg.

I wish I didn’t have to stay in an AFO, never mind even go as far as to get a second one made. Sometimes I feel so defeated by this one fact alone, but it’s really just accepting reality.

I’ve had to adjust to taking prescribed medication on a daily basis. I’m amazed how hard it is to remember to keep up on refills and orders for more refills, for just one medication.

I have more trouble with some of the most basic things, like climbing stairs, kneeling, putting on my shoes easily, etc., than I did before.

But I’m not in nearly as much pain as I was pre surgery. That alone is worth its weight in gold. Yes, I do still deal with pain on a daily basis, but I rarely shrink back at just the thought of running into the grocery store for 5 minutes. I still hate going to the grocery store, but it’s a pet peeve thing.

So when people ask me if “it worked” of if I’m “better” it’s not an easy answer.

It depends on what your definition of “worked” is. Also I will never be “better,” assuming by “better” you mean “cured.” I started my life with CP & I’m going to end it with CP.

I didn’t have the recovery process I envisioned. But it could’ve been a lot worse. The surgery itself could’ve completely backfired no matter how much hard work I put into the recovery.

Although, if I’m being honest here, I do wonder what would have been possible under the original plan. Where I’d have as much PT as my body could take and my outpatient post-op care team was well coordinated as my pre-operative and hospitalization teams. I was facing an uphill battle even if I had had the best possible circumstances so when things didn’t go, and wouldn’t be going, as planned I started to panic.

The recovery process may technically be over but I’m still figuring things out, the good, the bad, the ugly, and the in-between.

Most importantly I’ve seen what it takes to get what you want. It’s not always easy but it’s worth it, one-hundred times over.

The road to recovery is a lot like closure. You want it and work towards it but it never ends up being how you pictured it so you just keep going, because there’s always more road to travel ahead.

HAWMC Recap

In April I took part in The Health Activist Writer’s Month Challenge this month (also known as #HAWMC). I was supposed to post a recap of the month’s posts, but BADD was yesterday so my monthly review got pushed to today.

I’m not going to lie. This last month has been interesting balancing everything was a bigger challenge than I anticipated, even though I’ve participated in this challenge in the past. One of the biggest blessings of re-launching a blog is that I have a fair amount of previously published material to draw on and republish. Frankly it’s probably the one thing that saved me from throwing in the towel on the whole thing after a few weeks. Doubling your course load and planning to write almost every day for 2 months straight when you can barely manage once a week wasn’t the best idea. But I made it (and I’m ready for a break).

Here’s A Rundown Of Posts:

Wordless Wednesday
The Key To Happiness Is……
Random Acts Of Kindness
A Creature Of Habit
Proudest Accomplishments
My Hero(es)
My Daily Diet
Keeping Track Of Memories
Challenge Of The Day
Comfort Foods
Letter To A Pet Pal
On The 7th Day
(Not Always) A Comeback Kid
“I Feel Best When….”
What Gets Me Excited?
Life Goals Of A 10 Year Old
Tag! CP’s It
Summertime Blues….Maybe
Stress? What Stress?
If I Had Time To Travel
Reflection On Activism
Hobbies In The Lobby
Free Swim
Fitness Friday
Word Cloud
Have A Good Day
Hit The Road Jack
H.E.A.L.T.H.
The Reviews Are In
Hindsight Is 20/20

Keeping Track Of Memories

How do I go about remembering things that have happened in my life? It really depends.

I have a journal that I write stuff in, that sometimes doubles as the closest thing I have to a scrapbook. I’d like to tell you that I have scrapbooks as well but I don’t have the time for that, and more importantly I don’t have the patience (even if I had the time).

I have things that remind me of different periods of my life. A lot of them are things that I kept “until” a certain time period has passed, or “just in case,” and I’ve never gotten rid of them.

Like a pair of underwear that I wore the first day I put on real clothes after my last surgery.

(You’re welcome for that tidbit)

Or the tricycle I rode around the hospital on after my SDR.

(I won’t even let anyone borrow it)

Then there’s another category of things I’ve kept.

The “things I keep, but want to get rid of, but don’t in case I need them again,” category.

Those things would be things like, crutches, night braces, wheelchair parts, thera-bands, AFOs that still fit, copies of used prescriptions, restrictions notes, a transfer board, bed pads, even a bedpan.

Eventually though, that last category gets smaller and smaller in terms of items. Usually during the cleaning phases that involve playing “what’s in this box anyway,” however anything that falls under the category of durable medical equipment that required a prescription and/or insurance approval stays. I will never wait MONTHS for a pair of crutches ever again. Ever.

So that’s how I keep track of my memories. It’s unusual but that’s just how my life works.

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