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.

Redefining Disability Project #11

http://rosebfischer.com/2014/07/01/redefining-disability-an-interactive-blogging-project/

 

 

Yep, it's Tuesday again. Today's question is...

Does disability affect you in other ways?


Unfortunately, my stroke affects me at all times and in all ways even when I sleep. When it was just replacement joints or my diabetes, it was only when I moved or ate that caution was used. There was nothing wrong with my brain so I enhanced those activities when my body wouldn't work right. So for the most part, I thought and behaved normal. Yes, there were days that were worse than others, but it balanced out.

With my stroke my brain was the problem and nothing balanced out. I couldn't find words to express myself. I'd loose either words or my train of thought constantly. 

The PBA due to my stroke, has me crying, laughing, or ranting angrily at the drop of a hat. Let me tell you. The hat can drop several times a day. It can take as long as thirty minutes to regain control over my emotions with each episode.

My brain sends the wrong signals to my muscles and my leg and arm will bounce around all over the place (clonus). My brain will send another set of impulses and the muscles will fire into clenching (spasticity). Even sometimes, it won't send any signal at all (paralysis). I rarely have control. Even right now my leg is bouncing under my desk (clonus) while I type. Quick reposition and grabbing a trigger point and it stops.

In my case, yep!

The joy of eating has flown out the window with my stroke also. The whole right side of my face and halfway down my throat is numb. You know that feeling after you've been shot full of Novacaine and it's wearing off by the dentist? That cheek out to there and if you touch your face it feels like it's through a towel. Yep, that's the one. That's what my face feels like. Yes, the jaw works just fine or at least seems to being firmly attached to the left side.

Have you ever bitten the inside of your mouth while chewing? Gotten food stuck between your teeth and bottom gum? Have you ever taken too big of a bite and tried to swallow it? Because I don't feel my cheek or my gum on the right side, I'll bite the inside of my cheek about every other meal and once you do, it keeps on happening! Food will pocket in my lower right cheek by the gum line. While I have almost recovered all my tongue movement, I have to manually pushing the food up where I can swallow it from my finger on the outside of my mouth. Rice is the worse! Every bite I swallow is like to big of a bite because my throat muscles on one side are weaker than the other. I have to double swallow for every bite, but even so I'll have esophageal or laryngeal spasms. What's the fun in that?

These are just some of how my strokes have impacted my daily life each and every day. Living each day to the fullest is a challenge. Do I ever wish my stroke had killed me...sometimes. Hey, I'm being honest here. But it didn't, so I live each day to the fullest. I try to minimize the impact by trying to adapt so it is minimal. I make meal times an event. It looks good. It smells good. It tastes good on the taste buds. All the rest still happens, but I had a pleasurable experience before it happened. It balances.

I may not have control over the factors in my life but, I have a choice of how I react to them. I can either stew in misery or get on with my life. I choose getting on with my life.