Archive | February 2019

A Rose of Determination

Bragging rights, unabashedly.
I did it! Took hours, my fingers crawled back into a fist after, but I didn’t quit!

My first post stroke sketch I’m pleased with.
I’ve never been an artist, never claimed to be good, but I enjoy it.
Despite that a lot is left to be desired in skill I’m determined to use the neurons needed to help heal my brain in as many ways I can.
Using my right hand to improve its function and the zen like application of sweeping lines and playing with color is a reassuring way to relax outside of my head.

Originally posted on The Blog ‘Endurance’

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Determined

ENDURANCE

SURVIVING A STROKE
Determined
Posted on February 1, 2019

Every day in stroke recovery is different. As is every night.

I had been a chronic insomniac for 30 plus years when I had my stroke 14 weeks ago. Maybe the sleep deprivation caught up with me despite that I truly believed I had learned to roll with it. It was a most cathartic and productive time at dark o’clock in the middle of the night, I did some of my best writing while the world around me slept. Interestingly after the stroke I began sleeping at night, but to be truly transparent I must add that I also am sleeping during the day and evening too. The Neuro Fatigue is a constant struggle that no amount of rest resolves. Now at 2am in the morning I have been stood up by the Sand Man. Again “Mr No Show Johnson” is some other place than I am.

So I write.

determined

Staying Determined to put one foot in front of another even when you don’t feel you can lift your head is both challenging and empowering. That also can be different day by day, lately it’s more often than not. Despite being Determined to “Keep Keeping On” there are days that the effort, energy and motivation are epic fails.

There are days when getting out of bed and dressed are more than I can manage. Yet there are days I cannot begin my day fast enough. There seems to be no pattern to rely on, except when I have been especially busy and productive the day before I can count on not having an ounce of energy, sometimes not for a couple days after. Accomplishments of activities I once just did on autopilot now become enormous victories, these typically happen on days I feel energized and motivated. I celebrated the day I managed to use a manual can opener. On better days for my coordination and mobility I am able to draw and paint. Not good but I am Determined to do it anyway. Either kind of day may find me writing for an emotional outlet, being able to write again finally provides me with the most sense of things being normal. We need to connect with our “normal” sometimes.

As of yet I’ve not been released to return to work, my radio show, or even driving, early on my plan has been to use the time to continue the physical therapy every day, for joy to draw/paint even though I am right-handed and I have limited function still of my hand. Remember, every day is different (this is true for impairments from the stroke.) I also planned on using this time to sort and purge my cluttered home. I have an office/art room that is chock full of my business, art supplies, art tools, unfinished projects, music gear, music media….and junk! I have only used one corner of the room recently, and it was for a guest bed. Soooo…my agenda has been to make the room usable again for what I intended it for. I even asked a friend to move an old pedal sewing machine out of the room for me which I’d only been wanting to do for an entire year. Procrastination is certainly my middle name. Take one measure of Procrastination, mix in No-Motivation, then whip up weeks of Energy Deficiency and the perfect storm for Nothing Productive is created. I wasn’t making much headway in rebuilding a structure to my days post stroke. I’ve only managed to clean out and organize a few drawers. Yes, there is an analogy intended there.

I did actually start to make one routine happen while restructuring my life. I’d begun to routinely beat myself up on days that held no productivity to my name. I’d throw my hands up and declare “I’m freakin’ done!” This isn’t like me, well… the old me. Brain injuries change people. The old me was Determined. I needed to find her. Finding me and finding that determination and resolve was going to take some creativity on my part I soon recognized. I’d have to dig deep to find my way back to determination.

The very first thing I observed in my dig was that I was going to need to reassess what determination and living Determined means for me now. What was is not necessarily so today. Maybe it was time to accept that.

Determined acceptance.

Perhaps living Determined is about having the courage to accept just getting out of bed is enough. Especially on days when the fatigue is like being hit by a Mack truck.

Perhaps it is enough to be Determined to face the next hour when this one you can hardly breath, your body has gone numb and you fear you are having another stroke? Maybe being Determined is to accept that this is anxiety, not a stroke, and knowing it could happen again you face the next hour, and the next.

Being Determined means knowing when to push yourself, and it means knowing when to stop while you’re still ahead.

Being Determined I’ve discovered for me is knowing that just because something didn’t work today doesn’t mean it won’t tomorrow.

Being Determined is trusting that the struggles encountered today do not need to be my forever. My perception of living Determined means I must embrace the new me AND all that it means today post stroke.

I’d like to think that’s Determined Courage.

©taylor-helser2019

First-Rate Rehabilitation- Inpatient – ENDURANCE

https://endurace.blog/2019/01/28/first-rate-rehabilitation-inpatient/

ENDURANCE

SURVIVING A STROKE

First-Rate Rehabilitation-
Posted on January 28, 2019

Prompt Rehabilitation after a stroke resulting in impairments is essential to recovery. In this entry I will discuss the importance of rehab, the difference between a hospital inpatient Rehab program versus a Skilled Nursing facility, the environment of my inpatient rehab, the providers and all the challenging hard work it takes to move forward.

I learned that whether or not as a stroke survivor you’ll be given the opportunity for inpatient rehab therapy in this country is like all medical logistics, hit and miss, unless you have a strong advocate working for you. Between respective insurance policy’s, state and federal guidelines and laws, individual hospital policy’s and the patients individual prognosis it’s not guaranteed that a patient will receive the best program for their recovery. Or even at all.

Rehabilitation as soon as possible is indicated for progress in recovery, the brain is creating new pathways around the injured part of the brain, neuroplasticity, and the sooner we through therapy begin to use those new pathways the better chance for recovery.

In my case I had a great prognosis for recovery, was in a first-rate hospital, had an amazing rehab physician (and social worker and physical therapist) who for a week pulled no punches with my insurance company to get me approved for the hospital’s inpatient rehab program. Why my insurance company dragged their heels for 6 days is anyone’s guess, there was of course a bit of absurdity in the beauracy on the business side of medicine, I really had no need to be on a medical support floor those 6 days, and my team was ready to move me to the rehab unit the day after my stroke. I was blessed to have a rehab doctor who was adamant that the hospital program would best serve me and he didn’t want me transferred to a skilled nursing faculty. ( I later learned that the quality of care and actual rehab in these facilities is sub standard and can actually impede recovery) My doctor so believed in my prognosis as well as my own determined motivation that he’d confided in me on the 7th day that he was moving me to the rehab unit regardless of my insurance company’s approval, with no financial liability to myself if needed. That’s how firs-rate my experiences across the stroke board were.

The Universe works in mysterious ways, that same day we received approval and I was moved to the rehab unit.

Let the games begin!

My accommodations were as lovely as they were on the medical floor, a private large room with a beautiful view of the early November Fall foliage outside the full wall length windows beside my bed. It was comfortable, especially with My Pillow from home.

As I keep saying the program is first-rate. It’s very structured with three hours a day of intense therapy, three different disciplines; an hour each of Physical, Occupational and Speech therapies with amazing therapists.

The unit has a real community feel and I especially liked the community dining room for meals as an option to eating alone in my room. Gathering three times a day to share meals with other rehab residents was medicine in itself. Having others who are being similarly challenged sharing thoughts and feelings is another form of necessary therapy. From the moment of my first breakfast with the other residents I was warmly welcomed and shown the ropes. I came away from 12 days in the program empowered and with a few new friends.

While fighting “Neuro Fatigue” there were a few days that I had to pep talk myself into attending therapy, napping was my first instinct; but I had a mindset that I had limited time there and my recovery depended on my participation, AND I was not about to throw away what had been so fiercely fought for me.

Therapy involved re-learning and retraining how to first navigate life safely despite my impairments and how to keep moving forward in recovery. Physical therapy for movement and coordination, Occupational therapy for taking care of myself, and speech therapy for cognitive abilities. I was very fortunate in that compared to how bad it could have been I have some mobility issues but I could still walk and could move my affected limbs

Cognitively I had no real issues,thankfully, in fact after the assessment my Speech therapist told me since I was testing above average it would not be ethical for her to keep meeting with me. I did initially have some speech irregularities because the stroke also affected the muscles in my right cheek, I had a slight droop on the right side of my mouth. With exercises and the advice to slow down and over enunciate my words I rapidly improved. Droop gone. A technique given to me that really helped was to think about how Barack Obama speaks, slow and methodical, he doesn’t worry about taking a brief pause in his speech. This has helped me begin to lose the annoying life-long habit of the fill in sound of “umm” when I lose my train of thought or searching for the right word.

See? Old Dogs can be taught new tricks.

I won the lottery in Rehab, the last week I was there I was offered to move to a studio apartment in the unit. It’s intended to help transition all I had learned for going home. The studio included a gallery kitchen, gorgeous natural light from two wall lengths of windows and a REAL BED!!

rehab apt collage

Finally November 12th arrived, it was my discharge date.

As happy as I was to be going home I have to admit I was also sad to be leaving the new friends I’d made in the residents and the staff. There was a sense of safety there I’d not have at home. I was even going to miss the food. Really. For a hospital albeit a Hilton of hospitals, the food was better than some 5 star restaurants I know. I had favorites and I was going to miss 3 meals a day being prepared for me.

The program prepared me well for going home and to resuming living alone.

I couldn’t wait.

New Blog- Endurance Surviving A Stroke

I’d like to mention that the providers at St Charles Medical Center of Bend Oregon USA are by far the most professional, compassionate and kind staff any city is blessed to have. My experiences were nothing but positive and empowering. There is no dignity being in the hospital, especially when your mobility is compromised, yet the staff never lost sight of how important respect is. I’ve too many favorite doctors, nurses and therapists to name, but my rehab Doctor, Dr Eggert, my rehab Nurse Andrea and Meg my physical therapist indeed deserve shoutouts.

After 12 days (18 total hospital stay) of rehab, three different therapy disciplines the program readied me to go home with some confidence.

However that confidence was short lived once home. Learning just how much effort and emotional toll it took in trying to navigate life without the support of the hospital staff and structure blew my mind. I was fortunate that a close friend stayed with me the first two weeks home, I am not sure I could have even cooked for myself. Going to the bathroom, dressing, and having breakfast did me in, I began my day with a energy deficit.

I quickly learned about another deficit resulting from a stroke, Neuro Fatigue. Almost 3 months post stroke and I am still coping with being so tired that I nap several times a day.

I am still using a walker, my balance is iffy. I can now open the fingers on my hand, and am even typing now, I could not extend my fingers open at first, being right hand dominant I had to adjust fast to using my left hand while still attempting to use my right. I found it fascinating that when I intuitively tried to use my right hand without thinking about it more than often I could manage, when I put thought into it I could not.

Recovery according to my medical team will take 18 to 24 months, everything is a learning curve.

In the following future entries I will be touching on those learning curves, everything from ongoing physical and occupational therapy, Neuroplasticity, Anxiety, PSTD and Depression, inability to work, bills, inability to drive and having to depend on others, just to name a few topics.

My agenda is awareness for understanding, awareness for education, and more personally to use this format as a cathartic process for myself.

I am grateful for your interest and your time.

We all tend to think we are invincible, until a blink of an eye.

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taylor-helser