Why I: Don’t Feel Obliged To Advocate

A tweet came to my attention recently that I feel I should address.

However, I must issue a warning that it hit a nerve (or more like stomped on it) for me.  It might even have ventured into “trigger warning” territory with me but you’d have to check with Mac & Katherine on that one to be absolutely sure.

Now it’s an honest question and if I wasn’t part of the CP community in the way I am now, if I were a parent instead (for example), I might have the same question.

As someone who has Cerebral Palsy and is pretty high functioning I’m probably going to get some kind of backlash for my answer, but might get some sort of support too.

In short, I do not feel an obligation to reach out to those who are more severely effected by CP.

Now if we’re talking about reaching out in terms of forming friendships with those who are more severely affected; I’ve felt like people tried to force the issue when I was younger whereas it’s virtually nonexistent now. I don’t think you should be friends with someone just because you share the same disability. For me it would be like everyone with brown eyes being friends. More goes into a friendship than one commonality.

If we’re talking about reaching out in terms of community advocacy, my answer is still no, but longer.

We are one community but we don’t act like it, more importantly (from my point of view) we aren’t treated as one community.

The way I see it we’re 3 major parts of 1 community, and each part has an element of self-involvement, which is its biggest asset but it’s also the biggest obstacle for greater unity in the CP community.

In case you’re wondering, the 3 major parts (again according to me) are:
1) Parents of kids with CP
2) Parents of adults (who can’t advocate for themselves) with CP
3) People with CP

There’s a reason why I listed them in the order that I did with CP often receive the least amount of support (based on my own experience).

I’m sure you’re heard the saying, “secure your own oxygen mask before assisting someone else.”

My whole life I’ve not been what someone or an organization was looking for:
-I couldn’t get a wheelchair as a child because I could walk.
-I couldn’t try out for any age group swim team because I was disabled.
-I couldn’t receive intensive post-operative physical therapy (ordered by my physician) because I wasn’t disabled enough.
-I can’t learn to drive from anyone other than someone appointed by the state because I’m too disabled.
-I can’t receive job searching assistance because I’m not disabled enough.
-I can’t qualify for assistance grants because I can work.
-I don’t receive the most basic medical care because I have a disability & I’m considered too old.

I was in my 20s before I realized help wasn’t going to come and find me, like it seems to do for countless other people. I had to go find it and even finding help doesn’t mean that I’m going to get help. It’s always been a running joke that I’ve never really fit into a mold or set of rules, but this was real life and not a joke.

I don’t feel obligated to reach out to those who are more severely affected by CP because there are more resources out there for them. Also I can’t advocate for everyone in the CP community because it is so diverse. I stick to what I know best, but if that ends up helping more of the CP community than great.

I need to put on my own oxygen mask before I can help anyone else.

The Practice Of Unremembering

Anyone who knows me knows that fall is probably my least favorite season (yes, I’d even take a snownado before saying yes to fall). The pumpkin spice craze is enough for me to give the season two thumbs down.

It’s been my least favorite season for as long as I can remember, but in the last few years it’s gotten worse. I had surgery in the fall, which was a positive, but many days recovery literally meant not leaving the house (or even bed).

1 year, 1 month, and 1 day after surgery I took my first independent steps; a good day, but a long time coming (so not as great as one might think).

Then people started to die.

I made a conscious effort to remember all these important days and it’s draining as hell. I’m not the biggest fan of crying, even in private, and there I’d be sobbing as soon as I walked in the door.

I was so concerned that I would forget something so “important” that I was slowly destroying myself emotionally.

I thought this year would be different.

Then a close family friend of close family friends died. Someone I barely knew when I knew them, yet I spent many nights reading comments online and looking for memorials.

I was trying to remember someone I barely knew.

I realized I had to change my thinking or I was going to drive myself crazy, perhaps literally.

I need to learn the practice of unremembering. It’s OK to remember, but to attach it to a specific date forever means (for me) that I’m living between sad moments to other sad moments, that somehow I can’t allow myself to be happy just because something else came before and took that spot on the calendar.

Fall may never become my favorite season but maybe I can make things a little easier on myself.

Do you have any hang-ups that you need to let go of?

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.

Needles, And Tape, And Meds, Oh My!

Remember when I wrote about getting Botox and trigger point injections. Well last week I went for a follow up and follow up trigger point injections.

Yes, I willing went to get stuck with needles at the full digression of a medical professional.

No, I am not insane. I promise.

So I had trigger point injections (no Botox).

It’s never the most pleasant experience but if you get the desired results it’s worth it, even this time which was highly unlike all the other clinic visits (but I’ll spare you the details).

We also talked about the possibility of changing up my meds, for muscle management since I’m finding that I’ve becoming more “loopy, droopy, and stupid” but I’m not getting much in terms of less tightness and spasms in my legs. I guess it is possible to build up a tolerance (which I could’ve guessed but I wish someone had come out & said it anyway).

The problem is every medication has its drawbacks and there’s no guarantee that any of them will work any better. In fact I wouldn’t be surprised if none of them work well for me, at all. I mean, anyone who saw me during the short time I took B@clofen calls it “the crazy stroke drug.”

A few weeks ago I got into a discussion at PT that ended with my ankle being taped up, for therapeutic purposes, so I snapped a few pictures for the appointment for a visual, because my brain is fried.

He supports the tapping since it can have really great benefits. I’m not sure how I feel about it long term but we’ll see how things go. Knowing how my body has been the last few years, who knows?

Once we figured out how long the effects of the trigger point injections lasted a plan was made and out came the needles (well needle).

Normally I go sans any anesthetic, because I’m all badass like that.

Actually it’s more like I hate cold sprays or creams and get post-anesthetic headaches like it was my job (that last part I had forgotten about until I was half way home and the car spun about 180 degrees, thankfully not literally).

And I am a badass like that.

But my doctor wanted to make sure my muscles were “jumpy” because he was in a trigger point and not because he stuck a needle in my leg. So I sucked it up and took the spray, begrudgingly.

A few minutes later it was done and I was out the door, all except for the fact that one of my socks looked like it belonged to Curt Schilling.

 

Apparently I was going to be a bleeder too; again, not my usual M.O, but it’s not like I can control it.

The bruising is more than usual as well but that’s always an unknown.

The plan from here is to go back in the fall for follow up and the possibility of Botox and/or Trigger Point injections then.

All About That Botox

I’m not the biggest fan of Botox injections. It’s not because of the needles or even the insurance battles, although neither of those helps matters.

For me, Botox is like a popular movie or fad; it’s never lived up to the praise or expectations.

Thankfully my doctor feels the same way, at least in terms of using Botox as a treatment option for me.

However last year we agreed (he suggested while I rolled my eyes) to try another round of Botox injections. Maybe I didn’t need them on a regular basis but once a year would be good enough to keep the potential for more serious issues at bay.

I thought I had a “get out of jail free card” in the form of scheduling issues which just wouldn’t work with insurance requirements. However since my insurance had changed in the last year there were no such requirements to coordinate with my schedule.

Less than 5 minutes later I was getting Botox injections. I went with it, but I kept my expectations low, as in bargain basement prices sort of low.

But it worked, if we’re talking about if the intended goals were met.

I sat through 3 hours of class for 5 days straight with minimal discomfort. Because who can sit that long in class and be perfectly content for the entire thing? But I think we can blame lack of sleep for the discomfort, because who can be perfectly content when overtired?

I kept up with my classmates and managed to stay, fairly, well rested without much difficulty. And honestly that last part can be difficult to achieve even during my regular schedule, or at least as regular as my schedule gets.

So we agreed to revisit the “summer Botox only” once summer got closer.

Because my goals for summer are a lot more direct, in a sense, than during the rest of the year. And if something goes “less than ideal” then I have a more ideal compensation plan (aka long periods of sitting).

Knowing my fondness for Botox injections I also inquired about doing trigger point injections as well (because my track record with those is great too so why not ask for more unpredictable factors that just might not work out so well).

Although it should be noted that sometimes an injection of Botox “doubles” as a trigger point injection if the point of injection for Botox is in a trigger point, or something like that.

I hate the maintenance that Botox requires, however I’m hating having trigger points just as much so yes I did ask to be stuck with a fairly large (for the needle-phobic, anyway) needle more.

However I think if we were to rid my legs of every trigger point at one time I probably wouldn’t be able to stand up, but don’t quote me on that one (because anything is possible, or not).

Things have worked pretty well this summer too.

The bigger problem was having a morning class & an afternoon class, both requiring lengthy and heavy reading. The more tired I got, the more uncomfortable I got, which is pretty par for the course regardless of the situation.

People often ask me what I think about Botox injections as a treatment option for managing Cerebral Palsy and I always struggle with how to answer without worrying that I’ll sway someone’s opinion (especially if they’re acting on behalf of someone else). Botox works great for some people and that’s great for them. But for me it’s always a roll of the dice, at least we’ve found one situation when it can be beneficial.

Stress? What Stress?

Did you happen to read my last post about how possibly busy I’m going to be soon? Now you want me to talk about how I manage stress?

Seriously?

Honestly I’m not that great at escaping stress on my own. It usually takes someone else to pull me off the metaphorical ceiling.

I am not good at managing stress. In fact I think I have at least one nervous breakdown before getting anything important done, like large papers or presentations.

I try to take at least one day a week “off” to give myself some rest time, so I don’t have a complete meltdown every week. But that doesn’t mean that that method works all of the time.

I’m incredibly lucky to have friends and family who will help me de-stress whenever and wherever necessary.

Even if that means me showing up on their doorstop on a semi-whim partly seeking to take shelter in their guest rooms (aka my 2nd home) hoping to never be heard from again.

Seriously I’ve gotten some of the best sleep in those beds, including but not limited to a 12+ hour night’s sleep before or after a 3 hour nap during the day. Yes, my body needs a lot of sleep at times & I love to indulge in it whenever possible.

That being said it should come as no surprise that one of my favorite (and best) ways to de-stress is to spend time with family and friends, especially since that’s one of the first things to be dropped when I get busy.

I especially like going on road trips with people I really like. I don’t enjoy being trapped in a car for a long time, and I have little to no interest in traveling across North Carolina ever again, but it’s usually a good time solely for the company, the conversation, and of course, the music.

I’m not the best when it comes to stress management (or avoiding stress at all) so I love when I can unload my stress for a while.

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

On The 7th Day

I’m sure you’ve all heard the story about how God created the earth and on the 7th day (thought to be Sunday) he rested. Unfortunately I’m either working or doing homework, or both, on Sundays (and every other day of the week) so I have to take what I can get when I can get it.

So what’s my ideal day in if I’m having a bad day or after a long week?

I used to really like sitting in bed all day with a good book but now that I spend all my free time reading for class or a presentation I don’t think I’ll pick up something to read for a least 2 years after I graduate.

One of the best things I’ve ever gotten is a tablet. I never thought I’d be one of those people who felt they needed to have a laptop and a tablet but now I can’t imagine life without both of them.

Now if I’m having a rough day I don’t even have to leave my bed (unless I have to use the bathroom). So I usually chill in bed with streaming Netfl!x all day long.

I also get a tremendous amount of decompressing from swimming. I’m sure most people who watch me swim wouldn’t think that since I tend to swim long distances as fast as I can but I find it enjoyable, and yes, relaxing.

And of course I’d never turn down a quality nap or hard core night’s sleep.

My most favorite thing to do is take mini vacations to visit family, because I can always use more family time. But also because they keep me so entertained (and often busy) that I have no choice but to put down my everyday life and enjoy their company while I can. They’re the best self-care I can give myself.

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What do you do to relax after a long week? I’m open to suggestions.

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

A Creature Of Habit

I have all kinds of habits. Some of my own making and some not; some are good and some are not.

I have a few routines that I try to follow but those aren’t every day occurrences. I tend to slip into routines during routine times, like travel, vacations, finals week, that kind of stuff.

I’ve been going to the gym 2-3 times a week, for the most part, for the last few years. Then late last summer I transitioned from going to the gym with a trainer to going to Physical Therapy with a PT 2-3 times a week, thanks in part to a mystery muscle strain that just won’t heal.

I do miss going to the gym but not as much as I thought I would. I think it helps that I see a PT who enjoys sports and he used to work with one of my exercise physiologists.

I also try to go swimming once a week. Honestly I wish I could do more of that most of all since it’s something I’ve always enjoyed and it’s one of the few times in my week that I’m in absolutely no pain.

I never thought I’d be one of those people who would enjoy exercising, never mind miss it when I can’t fit it in my schedule, but I’ve become one without noticing.

I used to have a bad habit of lying to anyone and everyone who asked if I was doing a home exercise program, my answer was always, “Of course I’m doing my home program,” and I wasn’t, of course. I’m getting better at breaking the bad habit and establishing a good one to replace it.

There aren’t many health related habits that I wish I could break that are solely related to my health. However if I could have better time management skills than that would have an effect on my health allowing me more time to take care of myself when necessary.

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