Kilimanjaro

I love mountains.

I love looking at them. I love wondering how many people are climbing them at that very moment. I love thinking about how many people have climbed them. I love thinking about how many people will be repeat climbers (or hikers).

Even so I have healthy limits.

I know portions of Rainier are attainable as are Olympus.

Kilimanjaro is off limits.

Really cool, but off limits.

I hate treadmills.

From the first time I was ever put on a treadmill I’ve hated them. For some reason it became the first step to attempting to transition a patient from PT to a self driven exercise program, kind of hard when no one could come up with anything other than a walk on a treadmill.

When the treadmill first came up while at the gym, because we usually discuss to some extent before do, I divulged my hatred for the machine, it bores me to death. I need to be entertained to some extent while on a treadmill.

If I could pull an Oprah and play scrabble on my iPad while walking that could work.

But that would require an iPad.

And the ability to spell.

Maybe that wouldn’t work so well.

So the treadmill is used sparingly, because the word, “bored” is right up there with “can’t” or “no.”

Even so every few weeks or so I get on the treadmill (with the trainer or exercise physiologist standing by because I will get off) because it’s one of the few ways my glute muscles will actually get going (or “fire.” “Firing” muscles are always a good thing, so I’m told)

What is done on the treadmill is usually left for when I’m actually on the treadmill, and most of the time it’s for very good reason:

“I call this Kilimanjaro.”

(I clutched the treadmill to override the urge to jump off of it)

Apparently “Kilimanjaro” means for every minute on the treadmill you increase the incline by one. Then you do it again.

(I think, I deliberately wasn’t watching the settings change. I just walked.)

It takes about 20 minutes.

(The longest I’ve EVER been on a treadmill. EVER)

Do you want to know the most shocking part?

I didn’t die. I didn’t even want to die by the end of it.

I just wanted to be done for the day.

(Which didn’t happen)

I’ve done my Kilimanjaro. What’s yours? Have you done it yet?

*A similar version of this post was written on January 28, 2011

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A “Fit” ting Realization

I’ve made a few changes in my fitness routine. I won’t go into the details because I don’t know how much of the new will “stick” and how much of the “old” return, or if at all. It’s also more complicated than just feeling the need to change things up; although that was part of it.

In the midst of all of the change and transition I’ve realized something about myself.

I would make the worst workout partner on earth, possibly the universe.

Exhibit A: I’m on an elliptical next to someone else on an elliptical. I’m barely able to keep the machine going under my own power. That someone else inches from me is going close to 100 rpms (or whatever) while texting full conversations and listening to an iPod, like it’s no big deal.

I realize we look like an exercise infomercial, and he has no clue what he’s doing (and how his actions may be effecting the self-image of others.

I resist the urge to push him off the elliptical, mostly due to my personal safety (balance) than any other repercussions.

Exhibit B: I’ve just finished up a few minutes on the recumbent bike. A feat that would have been laughable not that long ago but now I can keep a steady (albeit painfully slow). The seat also has to be “just right,” pretty much the ultimate short people setting but not quite. I hear a lady behind me say she hates the bike (can’t say I blame her) because she’s too short (she’s actually a little taller than me). I think, she’s going to be pretty surprised when she realizes she’s going to have better luck today.

I watch her out of the corner of my eye and she peddles twice (or maybe it was four times) and quits.

I resist the urge to give her a five minute lecture on how it took me years to do what she just did and she gives in, because she probably surrounds herself with people who allow her to throw in the towel far too soon.

Exhibit C: I get to the pool 5 minutes “late” (5 minutes after opening) so all the official lap lanes are taken. I “trudge” down the pool ramp wishing it was deep enough that I could roll my wheelchair to the edge of the pool and “jump” in.

The lady in the lane next to me is doing “the old lady dog paddle.” She shouts to my mother (who has to bring me to the pool because of a lack of automatic door openers) that she forgot to close the door (the door closed by the time she got back to it). She does 2 more laps before getting out of the pool. She uses the ladder (which happens to be in my lane), she almost kicks me in the head in the process.

I stop myself from wanting to shout at her about noticing an opening a barely open door yards away but she can’t manage to keep her heals within striking distance of my eye.

Exhibit D: I’m using the upper-arm bike trying to keep a pace in the 50s rpm range. I realize I’m actually keeping steady in the mid-60s without much difficulty. Someone is using the upper-arm bike next to me.

It doesn’t take me long to realize I’m trying to out due them, without knowing how far they’re going or who they are. But I did get to 70 rpms.

Exhibit E: Lest we forget why I spend the extra money (which I don’t really have), because I’m not the best person to be left to their own devices. For all intents and purposes I need a “babysitter,” because if you tell me to do 3 sets of 10 of anything and walk away I’ll just make it look like I’ve done 3 sets of 10 & then lie to you about it.

But at least I’m honest about my dishonesty, within reason.

Exhibit F: Even when I win (a board game, cards, anything) I don’t consider it a real win unless it’s by a fairly large margin.

My name is Sarah, and I think I have a problem.

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

 

Athleticism + CP = ?

Personal note: The timing of this post and the events in my personal life are in the realm of “God laughs at me, all of the time.”

Growing up people always seemed interested in whether or not I had athletic aspirations, conversations which never seemed to go how you would expect. I was always picked last in gym class and never could try out for a team. I was somewhat relieved when I went to a high school that didn’t offer team sports, then my answer could be “my school doesn’t have sports” without further questions. But that didn’t mean that I didn’t have athletic aspirations.

I didn’t think I’d ever become an athlete but now I can’t help but call myself one, if asked. Although I do get more quizzical looks now than I probably would have way back when people would ask about my interest in sports.

People think I swim as part of rehabilitation, that’s how it started but that’s not what it is now. Are their rehabilitative aspects of it, sure, but that’s not the primary goal these days.

I’ve made the mental shift from recreation and rehabilitation to athletic pursuits and then the physical shift followed.

As I spent more time in the pool I realized I needed to spend more time in the gym. The more time I spent at the gym has meant, among other things, that I’ve needed to spend less time picking myself up off the floor after a fall.

The more time I spend at the pool and in the gym the more I ate, and the more attention I paid to what I ate. I can’t just eat whatever I want and expect it to sustain me through a 2 hour swim, just one 25 yard sprint makes that point really fast.

Never mind the fact that people with CP burn calories at a faster rate than able bodied individuals, and that certain foods seem to have adverse effects on muscles prone to spasticity.

If I don’t have the fuel I can’t workout. If I don’t have the right fuel I can’t get the most out of my workouts.

Not everyone can be an athlete, but having a disability doesn’t automatically exclude you from becoming one.

People with CP can be athletes. I know, because I am one.

Quotation Inspiration

Start by doing what’s necessary; then do what’s possible; and suddenly you are doing the impossible.
– Saint Francis of Assisi

I noticed this quote in the signature of an email, probably because creative signatures are becoming a rarity.

It made me think of living with CP & working alongside medical professionals for effective care.

Start By Doing What’s Necessary.

My mother “likes”* to tell this story where other moms of kids in my peer group would invite me (and my mother) to their play group. My mother would say that although it would be nice to go to play group but that I had PT at that time (usually). The mother who had invited us to said play group would usually reply, “Can’t you just cancel that?”

My mother’s answer was “No.” Her answer was always “No.”

She’s often said that she didn’t want to sit around and make small talk with moms that didn’t understand why PT was important anyway. She didn’t want to sit around and listen to people brag about their kids either.

I don’t fault my mother for her response. I didn’t even know how frequently she had this conversation with people until a few years ago. If anything I’m glad she kept all of this from me, because I would’ve resented her when she said, “No,” so it all worked out for the best.

Socializing is important, but when you have a disability so is therapy. Therapy allows an individual to learn what they’re typical peers already know. It’s a necessary part of growing up, that is if you want to grow up and be able to keep up with your peers.

There are plenty of other examples that I could’ve used to illustrate the “necessaries” of CP, but PT seemed to be the obvious choice since I had a good story to go with it.

Then Do What’s Possible.

Doing what’s necessary enables you to better do what’s possible, and sometimes enables you to be able to do what’s possible, at all.

You may not be able to do something the same way as your peers but you can do it, and with style!

The cool thing about doing what’s possible is that the more you do the more you can do, even if you weren’t able to do it before.

The best thing about doing what’s possible is…….

Suddenly You Are Doing The Impossible.

This is a dead giveaway given the first 2 points, but I can prove to you that it’s true.

I never took care of myself physically. I did what was necessary, pretty much, but that’s it.

I never took care of myself, until I saw what taking care of myself actually meant.

The only reason I started going to the gym at all was because I had met my post-op PT goals yet I wasn’t able to do much else.  I could dress myself but unable to get clothes to dress myself with. I could get up and down a single stair safely, but only if I had to.

Going to the gym is different than going to PT. It isn’t any easier, but it does change things up a bit. Some goals took longer to achieve than anticipated but I got there. I had every intention of stopping once I was “better” but things didn’t exactly work out that way.

I’ve lost some ground recently BUT in the last few years I was able to do things I’d never been able to do before; I honestly thought some of them were impossible.

So, “Start by doing what’s necessary; then do what’s possible; and suddenly you are doing the impossible.”

*I say “likes” because this is something she doesn’t bring up at every opportunity but it’s one of those stories that I’ve heard enough times that rolling my eyes each time I hear it has become an automatic response.

*A similar version of this post was written on March 6, 2014

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.

On Goalsetting

There’s this really annoying thing that happens when you spend most of your life in Physical Therapy instead of dance classes and after-school sports.

Your life is determined by goals (and the predicament is even worse if you’re in Special Education).

I still remember most of my long term PT goals, mainly because I haven’t achieved them. Most of them started as a 4-week goal, then got moved to an 8-week goal, then 16 weeks, etc.

I’m convinced that wherever my pediatrics records have ended up there’s a list in my file of “Bucket List Goals;” and “getting up off the floor using a half kneel” would be somewhere on that list, if not at the top of it.

It’s something I can’t do, still, it’s not on my goal list, I don’t think it ever was to be honest. I tried it a few months ago at my PTs request but when my protests were accompanied by pain it went back to “the never ever” list.

I used to hate goals. They didn’t seem like something to accomplish rather something to do because someone else said so, like standardized testing.

I started to set goals for myself after my last surgery. I needed to, before I went crazy. I went from being fairly independent to needing help with something as simple as putting on a shoe in less than 5 minutes. I needed to give myself a reason to get out of bed (or sometimes get in bed) that was dictated by me only.

The 1st time I set foot in a gym we talked about goals. The big ones were obvious, I was there to learn to walk again (since insurance had cut off my PT) and smaller ones were mentioned, like getting on the Stairmaster for 30 seconds and not want to die at the end, but I kept my personal goals to myself for a while.

I found one worthy enough to be shared (as in I knew people wouldn’t think I was insane) but the training for it ended up being something I couldn’t do; in fact, it may have contributed to my nagging injuries.

When I went back to PT I had one goal. Fix my hip and get the hell out of there and back to the gym.

I started swimming again while going to PT 3 times a week. As frustrating as I found PT I found my return to the pool to be even more frustrating. My brain knew what to do and so did my body but somehow I was struggling to get from one side of the pool to the other without feeling like I was on the verge of drowning.

I started to incorporate my swim goals into PT, unofficially, especially after I joined a team. “How did your swim go?” is always answered by a list of wishful improvements.

I voiced the physical goals but kept the mental ones to myself, because mentally I am my own worst enemy so those are best kept to me, myself, and I (at least for now).

I found an Inst@gram post that pretty much sums up how I feel about not only swimming but goals in general which says, “Swimming is the most mentally challenging thing I’ve ever done – and I love it.”TheAwesomeSwimmer

I hate setting goals because I fear I won’t ever achieve them, especially goals I’ve set for myself, but once I’ve achieved it I feel good, and wonder what the crap I was so freaked out about in the 1st place.

Although I hate setting goals I’m at a point when I can’t help but do it and I have to say it’s pretty awesome, at least when it’s done well. For a long time, I was afraid to set any goals just in case they ended up being too big.

In reality I didn’t want to discern whether they were really achievable at all, maybe I wasn’t able to, even if I wanted to.

It’s OK to have goals, even really big seemingly unachievable ones. The thing to remember, and in my case recognize, is that most of the time you can, and probably need to, set up smaller goals on the path to the bigger goal.

I may never have been a fan of setting goals but I’m learning to appreciate their true purpose.

I Don’t Believe In Miracles

One of the things I always admired, and liked, about the Catholic Church, even when I walked away from it, was their necessity to validate miracles. The main reason being, I believe people overuse the word “miracle.”

I’ll give you an example; I’ve had to relearn to walk multiple times (3 or 4, I think). Each time was during a different phase of life with varying circumstances. The only constants were they were after surgery and it was declared a miracle by multiple people.

Here’s the thing, it only looks like a miracle.

There hasn’t been a single time, during any of those, when I’ve gotten out of bed and suddenly been able to walk without some sort of difficulty during any of those time periods.

That would be a miracle. That hasn’t happened to me.

A lot had to happen in 1 year, 1 month & 1 day (for example) for those first independent steps possible.

The hours of PT.

The hours spent doing an at home PT and hoping you’re doing it right.

The hours waiting for and/or attending doctors’ appointments.

The early mornings.

The sleepless nights.

The pain.

The countless days spent trying to appeal insurance denials.

The hours at the gym because you’ve maxed out your insurance.

The co-pays and out of pocket costs.

The time out of work.

The time away from friends and family.

The prayers.

The hope that tomorrow will be better than today.

Calling someone or something they’re able to do a miracle discounts the hard work they’ve put forth to make this so-called “miracle” happen.

I’m not saying that miracles don’t happen. There wouldn’t be a need for The Congregation for the Causes of Saints, for one thing, if there weren’t indeed miracles. But sometimes we’re quick to “cry miracle” without realizing that it took a lot more than you can imagine to make that miracle happen.

So next time you witness a miracle, take a minute and consider what might be behind that miracle before you make your declaration public.

A Tale Of 10 Toes

I, like most people, assume have 10 toes.

I, however, don’t know I have 10 toes unless I’m looking at them.

This is for two reasons; I have horrible Peripheral vision and low depth perception. I literally cannot see my feet in front of my face. I’ve also had a Selective Dorsal Rhizotomy (SDR) from L1-S2, so I do not have full sensation and/or movement from L1-S2.

At one point I was able to move my toes at will, or as much as possible as someone with CP can. However it was so long ago I have no memory of ever being able to do so.

I few weeks ago (or maybe it’s a month by now) my PT wanted me to try doing Monster Walks. I thought he was insane for suggesting it but I relented and demanded that the exercise be modified.

Placing the band above my knees gave me a fighting chance of not falling on my face after two seconds. In fact I made it one lap around the gym, with support (aka fall prevention) from my PT (and no I have not walked backward, nor do I ever plan to, ever).

I left PT shocked that I was able to do the same exercise I’ve seen countless others do over the past year with practically no difficultly (considering how things could’ve gone).

And then I went to bed, and tried to sleep.

Nerve pain kept me awake for hours.

You know that buzzing noise that comes from the lights in old school gyms? That’s what my legs felt like; a constant flow of electricity running through my legs.

It’s happened before due to different reasons but it’s never fun. Also it always seems to happen after midnight and last for hours (aka prime sleeping time).

It’s painful, although not as painful as spasms, but mostly it’s annoying because I just have to wait for it to go away.

I realized I had two choices: 1) Battle through the nerve pain hoping for some sort of breakthrough or 2) Quit.

The later was really tempting, but given that I wasn’t having spasms and nerve pain simultaneously I went for the 1st option (with the support of my PT).

After a few sessions of monster walks I realized I could feel my 1st & 5th (the big toe & little toe) toes on each foot.

Then I could feel the 1st, 2nd, 4th & 5th toes on one foot and the 1st, 3rd & 5th toes on the other foot. It seems unbelievable and in a way it is, but it’s also annoying.

I didn’t realize how often a bang my toes into things and drop things on my feet without a second thought. Nor did I realize how often I trip over my own toes by rolling them under my foot and then taking a step.

I know what you’re thinking (probably), how is it possible for someone to regain sensation after almost 30 years? I don’t know.

I’m not sure anyone knows (but if you know please tell me).

Will I regain sensation in my remaining toes? I don’t know.

Will I be able to move any or all of my toes at will at some point? I don’t know that either.

At this point I’d settle for not walking into things, or over my own toes, dropping things on them, or scrapping them up (which has happened a lot lately).

I have 10 toes (well 7 confirmed); now I actually know it.

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.

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

Challenge Of The Day

If I had a dime, or probably even a nickel, for every time I’ve had to face (& overcome) a challenge I’d be rich (or close enough).

My biggest challenges would have to be having to learn to walk again, which I’ve had to do enough times that I’ve actually lost count (my best guess is 3 or 4). The only way I got through it was not giving myself another option. I HATE crutches and I refuse to allow myself to use them any longer than necessary. I know some people don’t mind them and will find what I just said as an insult but something that works for one person doesn’t always work for someone else.

The last time was particularly daunting because I was told the success of my recovery from surgery would rest largely on my shoulders, being the oldest patient to have this particular surgery, my surgeons had the easy part. I also set the bar high for myself I was told the typical recovery lasts about 6 months but mine would be about a year, given my age. So I wanted to be better than “back to normal” at 9 months (not that I told anyone this, until now).

When I couldn’t even take two steps independently (and reliably) on day 366 post-op I was more than a little disappointed, to put it mildly.

As annoying as it is to learn to walk again (and again and again) I do enjoy a challenge.

In fact after I was discharged from post-op outpatient PT (far too soon, in my opinion) I would go to the gym and work with a trainer who interned (mostly in the inpatient units) at the same hospital I was discharged from so he knew a lot of the same therapists I saw.

It didn’t take very long for one of us (or both of us) to get bored by doing the same thing every time I went to the gym. But the thing with CP is, “if you don’t use it, you lose it,” basically you have to do the same thing over and over and over again or your brain will just forget it. So we made a plan.

“Machine Mondays”

“Functional Wednesdays”

“Fun Fridays”

Mondays I would be at the gym so early (6am or 8am) that routine was welcomed. In fact most of the times I was half asleep and didn’t even realize when I was making progress, although sometimes that can be a good thing.

Wednesdays were mostly gait training aka walking practice. Usually walking and stopping without falling over, or being able to catch myself before said fall. Yes, it was much like an adult version of “red light green light.” And/or there was an obstacle course to go through, which were much less fun than ones in gym class or public play area.

Fridays were typically devoted to filling in any gaps that happened on Monday and/or Wednesday, whether it be from a loss of progress, a potential loss, or something that just didn’t happen. But inevitably there would be “the challenge of the day” (occasionally there would be more than one depending on how the first one went).

As much as I would bitch and moan about them (and question my trainer’s sanity) I enjoyed them. For one thing they kept me (or us) from getting bored. They also ended up being easier than I thought; at least once I got the correct movements down. If I didn’t get it that day we’d work some element into it for the next week and it would become a new goal.

What advice would I give others facing daunting challenges? Set goals; big ones and small ones, short term goals and long term ones. Don’t give yourself another option either, at least not without a lot of hard work first.

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