The Danger of Being Labeled Noncompliant

You hear quite a bit about noncompliant behavior on the news in regards to the demonstrations going on in the country right now. But I'm talking about being noncompliant in your health care decisions. Especially when it comes living post stroke. Maybe, you were one of the lucky ones who recovered 100% or very close to all of your sensation and/or function after your stroke, this isn't directed towards you, but at the other 85% who weren't as blessed like me.

It's been 8 years since my first stroke left me paralyzed on my right side. Now, whatever I did recover has been nullified by post stroke spasticity and contractures.. That's despite being compliant and doing my rehab exercises religiously twice a day to the best of my abilities. My body just worked against me.

What do I mean by noncompliant?

noncompliance

[ non-kuh m-plahy-uh ns ]

noun

failure or refusal to comply, as with a law, regulation, or term of a contract.

(www.dictionary.com)

When I was discharged from the TCU (technical care unit) after my stroke, I was given written exercises to do at home once or twice daily. This was an implied contract. I did and still do them to the best of my ability. I was told why I needed to do them towards my recovering from the limitations of my stroke. I could stop them when recovery was made. Have I recovered yet? No, so I still do them even after eight years.

Now being human, we expect a reward for doing something good, right? We expect

to keep strengthening muscle and memory until the movement is there again. So you don't recover what was lost in the optimum 30 days or even the golden 60 days, you switch gears to the long run. You are no longer running a short sprint race, but a much long distance run. A 10K or 20K? Nobody knows for sure. But you keep at it because one day something may click just right in your brain and function will be restored.  It's a lottery, a chance, a hope, or a dream goal to strive for. And, you are still compliant with the first contract upon discharge 8 years ago.

What's the sense in keeping on doing it, if I can't recover what is lost? Only you can decide when all hope of recovery is lost. If you join the noncompliant group you may still recover, but then you'll be at a loss because muscle mass has been depleted. There are cases of recovery twenty years after a stroke.

What happens when you give up and refuse to be compliant? The physical therapist makes a note in your chart that you are noncompliant. How important is this little note? It will follow you the rest of your days. 

Don't believe me? Think back to your high school 

grades. If you knew then that the "D" you got in history would show up every time someone asked for a transcript, even in your 50s and played a part whether you got a job or promotion, you would have tried harder, wouldn't you try to get at least a "C"?  Sounds silly? It happened to me. It didn't matter a hill of beans that there was issues with the instructor. In trying to explain why, only emphasized my inability to work with others.

Anytime in the future when you need services, it will pop up. Your insurance company also receives a copy of this note and decides not to pay for future treatments. Every doctor that gets a copy of your rehab notes will see it and decide you shouldn't be their patient. Having that little "noncompliant" note can have a huge impact.

Think that a label can't hurt? One doctor dropped my husband from his services and worse yet, labeled him as a drug seeker. Now, my husband's current doctors looked at the label and laughed, and knew it wasn't true. But when looking for another doctor to replace him was next to near impossible.  The label hurt our search. I ended up calling in a favor to get him seen by a new specialist. After listening to his side of the story, this doctor kept him as a patient. We battled this label with every new doctor for ten years before my husband died. A note of "noncompliance" may not be as extreme as this case, but they follow you for decades.

Just a word of warning. Try your best and keep trying. You never know who is watching. You may be tired of trying, angry at a broken system, or involved with current situations that cause you to reach the point of giving up. I understand. I'm there too. But I won't always be here. Things tomorrow may change.

Nothing is impossible.

Just a word of warning.

Sunday Stroke Survival: Trouble with Tribbles Continued

Du,ring my down (nonwriting) time and before my unexpectedly long hospitalization, I had some life decisions to make. The accident shook me up and hurt me worse than I wrote about here. I had a concussion, an avulsed left eye, banged up both sides of my body, my implant slipped from its pocket, and was really doubting my ability to continue to live independently.

It was this last doubt that made me stop writing the posts. I needed to do some serious soul searching. I started doubting and second guessing every decision I'd made since my stroke in 2012 and the death of my husband in 2015. Yes, I was that badly shaken up. Who was I now? What was I honestly capable of now? How much of what I believed I could do was hype and how much was reality? I was reevaluating goals and trying to find some order that was realistic. This was a mighty tall order and I was taking an honest hard look at my life and the rest of my life. With all that's come down the pipe is it any wonder I wanted it to be 2012 again, but it never would be again?

I wasn't without options. I could give up this lifestyle choice and move into a senior's living place or assisted living place back home. I have so few possessions that it would be feasible. I'd even have to buy a few things like dinnerware, a dining table and a bed. My needs are really simple at this point. It would just mean moving back home near family, friends, and my church. But it would mean giving up some of my independence. I decided to stay put for the time being. The other options were still open.

After my ordeal, the simple acts of feeding myself, going to the bathroom, and getting dressed are about all I can manage these days. Once again, I'm considering my other options, but my stubbornness continues to make me stay put for as long as I can. Although distant, my stamina will increase again. Oh what a joy to get older. Everything takes longer. A long list of honey-dos awaits and growing while I do this. They'll get done eventually.

Nothing is impossible.

Sunday Stroke Survival: Feeling Guilty?

Have you been feeling guilty as you are living post stroke? Have you not performed your rehab exercises, or even quit doing them? Have you changed your goals to take it easier on yourself? Have you lost all hope of ever recovering and just getting by and settling?? Insert anything you are feeling guilty about here?

My first question to you is why are you beating yourself up? You are being your own worse enemy.

My statement follows this is why beat yourself up when I can be the bully here. Pretty please, let me be the bully. I know you can't see me but I'm wearing my wicked, evil grin. MUHAHAHA!Although being wicked would be more fun for me. Why won't anyone let me mean and wicked? Oh, alright. Be that way. I'll just throw facts and logical arguments at you then. 

 Only you can make you a failure and fail. Only you can give up and quit trying. Everyone around you won't care about it as much or have as much to lose as you do if you quit trying.  Everyone around you will either take the view of a) this her standard m.o., or b) "Poor thing she gave it her/his best. Such a shame too. She/He had such potential before this happened."

1. Nobody will kick themselves harder than you. As I said, YOU are your own worse enemy.
2. You can't buy or bargain your way out of feeling guilty. No matter what bargain you make or how much you buy won't stop the guilty feelings.
3. You can't change others if they don't want to change. By the same token, only you can change you.

All that being said, how do you stop feeling guilty?

1. First you analyze why you feel guilty.
2. Be bluntly honest with yourself.
3. Fix it! Then stop the guilt trip.

Have you lost all hope of recovering? Are you tired of of doing the same thing and seeing no results, or like me, losing ground and sliding backwards with no brake pedal in sight? I'm writing this as much for you as much as for me so you can see how I hash these thoughts out. 

I've been working towards recovery for almost seven years now. I've actually backslid to the point where my balance is so bad I'm thinking of getting a quad cane.I'm falling or almost falling at least once a week if not daily. I've lost the range of motion in my affected arm and shoulder after recovering all but my wrist and three fingers. The last year of searching for alternative treatments are unresolved and I'm taking even more medication than ever before. My proactive side has taken quite a beating. It has been whittled down to nothing.

Why not stop and give up? Admit defeat. Haven't I given it my all with nothing to show for it? Aren't I justified in feeling like this? What do I have to feel guilty about? But, I do. See, I'm not any different than you.

BUT  There's that word again!

Doubt is a two sided coin as is guilt. You can go around and around between the two sides. That's the neat thing about changes you want to make in your life. You can always change your mind and try the other side. Barb Polan recently felt like a quitter and thought she was settling instead of her being her proactive self. It took others, stroke survivors, to show her she was neither. If there's one thing I've learned over the half century alive is that life changes constantly. Often, it's in the blink of an eye. You either roll with the punches, or they'll flatten you as they steam roll over you. YOU make the choice.

I guess I got my answer. How about you?

Nothing is impossible.

Thursday Turmoil~ The End for Right Now

This week came time to say goodbye again to my physical therapist. Sad, though she knows I'll be back.


I'd reached a point where PT was causing more pain than benefit with the returning of my spasticity and months to go, May, before another series of Botox injections. Yes, therapy does break the pattern of spastic muscles but the work outs were reaching the 8 out of 10 on the pain scale and lasting more than a day. Each therapy day I found myself having less and less progress because of it. The frustration was the real killer.

I had dropped the work on my foot and ankle for this very reason a couple of weeks ago. Between the Achilles tendon contracture and the spasticity we were only going through the motions, and not making a smidgen of progress.

Yes, I do know it takes time. I've said often enough here that time is money. I achieved a 30% increase in mobility of my shoulder and 80% regain in active motion of my elbow. I am now better in active range so that's a measurable progress. I absolutely despise having to pick and choose. But decisions have to be made towards optimal versus palliative alternatives within a given set of dollar choices. If I had my way I would stay in all therapies twice to three times a week until I recovered all I lost, but short of spending thousands of dollars out of pocket, that isn't an option.

I've talked about the contracture of my Achilles tendon, right? From what I've learned, it's fairly common with stroke survivors. It will take time to remedy. I'm using my therapy bucks wisely this year for optimal recovery. I'm in recovery for the long haul. There is no quick solution. I wish there was.

On a different note, I went shoe shopping the other day. I had no success. Where do y'all AFO wearers find shoes that fit??? I mean pulling the inside soles out of brand new shoes in the stores is sort of frowned upon. I was told one size higher and a wide width when purchasing shoes with my AFO. My orthodics maker said that Dr. Comfort makes shoes for AFOs, but the cost is like $175 for a pair of shoes! Then you are ordering via the internet so there's no guarantee once you get the shoes whether they'll fit or not. Now with the additional block on my AFO, it makes it doubly hard.

I must have tried on fifteen pairs of tennis shoes in the store! None of them were wide enough to allow for the width of the AFO. I could use some advice from someone who has walked in my shoes literally. My current pair was gotten while I was in the hospital by Hanger. I figured $129 worth of shoes wouldn't wear out so fast. In ten short months the instep sole has worn out to nonexistent in my left fully functioning foot. The soles are pulling loose and cracked. They pick up every piece of pine straw and Spanish moss it steps on. I've been to every shoe store in my town with no luck. HELP!