Tuesday, January 27, 2015

Redefining Disability Project ~ Post #15

If you see this picture it must be Tuesday again.
Question #14
Describe your baseline, or an average day.
My average day has been upended by being a caregiver. I beg to question why be average when being Abby normal and excelling is so much fun?I excel at being Abby Normal. But that aside, I'll continue.
Awaking in the morning normally coincides with my bladder being full like it is for most people. Except when I first wake up, I don't realize that my bladder is full. It takes movement for the sensation of a full bladder to register. It's one area where I have a sensory deficit from my stroke.

I clamp down on my peritoneal muscles and reach for my brace. I'll don the knee high socks I have to wear with it, position it correctly, fasten all four velcro straps and then put on my shoe. Repeat the process with my left leg sans the AFO. I'll swing myself into an upright position and drop my legs to the floor. My mattress sits a little over my hip height.

And then, finally then, can I make my way the twenty steps to the bathroom willing myself not to pee all over myself. It doesn't always work. Accidents happen. When an accident happens I've got to strip my clothes off including my AFO and clean myself, my AFO, and shoes before putting them back on. This in itself is pretty average because it happens more times than not. Now I wear pull-ups at night. Less early morning fuss and muss.

I'll get dressed one handed. I've done away with standard zippers and buttons because elastic waist pants are so much easier. Baggy t-shirts replaced the button down front clergy shirts I used to wear. Most times I go around without a bra on. I mean, who am I trying to impress? I rarely conform to the norm at least by US standards. I find it is much easier to get dressed lying in the bed instead of sitting on the side of it. My leg while not technically paralyzed has a mind of its own with the spasticity. My doctor tested the knee reflex action by tapping it with his rubber hammer and it bounced all over the place like one of those little rubber balls on speed. It took three minutes to stop because he wanted to see how long it lasted. In colder weather, it's baggy sweatshirts.
I'll say my morning prayers and praise Him for the day ahead. Because any day above ground is a blessing.

I'll grab a plastic spoon and a cup of yogurt from the refrigerator to serve as breakfast. Sometimes I'll eat grits or oatmeal, but that's simple enough with a microwave. Feeding myself has never been an issue. I've always gotten food into my mouth as my girth will attest to. A quick clean up too...just toss it into the trash. The grits or oatmeal may mean washing a coffee cup. I take my handful of meds (all 8 of them).

Cute when they are this size
I'll tend to my critters next. The puppies (full grown German Shepherds) are fed. The cats have been loved on and fed. The lot goes outside to get from under my feet while I tend to the others. I'll give the Angora bunnies their attention while I spot clean their 56x42x56 inch cage and they'll get to hop around the family room while I tend to the rest. They are really going to hate downsizing with the new additions planned this year. Stray bunny pellets and hay are swept up and put in their litter box. This is emptied weekly. Yes, they are litter box trained bunnies. Next comes the Guinea pig, Bella. Her cage is cleaned, she's loved on, and fed. Choice morsels of Dandelion greens are fed to her by hand. I'll call for the boys, the rabbits, and they'll jump back into their cage ready to eat. Yes, I trained them to do this also. I'll leave them a pile of Dandelion greens in their cage too. Yes, I spoil my babies.

Then, I'll go outside for the rest of the daily chores. I have a year around garden. My climate is mild only freezing a couple of days a winter. I'll cut lettuce leaves and pull weeds, water each plant while I talk to them. The leaves and weeds go into the composter which I turn diligently every day. If I don't take care of my garden-my garden doesn't take care of me.

I'll do my physical and occupational therapy twice a day. This involves thirty to forty-five  minutes of concentrated effort on my part. After almost three years post stroke, I still do them. They are essential to my recovery.

I'll play games on my computer. It's not really playing. The games help rebuild some parts of my damaged brain like sequencing, numbers forwards and backwards, finding words, and even color definition. Right after my stroke I couldn't distinguish between green and blue. It's cognitive therapy. It might be fun and games to someone else, but to me it's work.

I write this blog and answer the slew of emails I get each day to rebuild my spelling, vocabulary, and context. I still will have to write it in advance to correct it several times before you read it. But very slowly, it is getting easier to write. It is still going to take time to get it right again.

Sounds like anybody's normal day doesn't it? Except I work twice as hard to have a normal day or have it appear normal. 
I suffer from chronic fatigue since my stroke and have PBA. When my brain gets tired from too much input the body follows close behind. Too many people talking at once even if it's just two people is exhausting trying to keep up with what they are saying. After washing a few dishes in the sink, I'll need twenty minutes just to recoup some energy. With the PBA, I can cry because the wind is blowing, or fly into a fit of anger because the paper got wrinkled. It's a fine edged sword of emotions that I can do little to control. I do have a miniscule amount of control over these things now, but it's been almost three years in the making.

My day revolves around a clock ticking down from the time I awake. Between medication and fatigue, each task takes twice as long and uses twice as much energy as it did before my strokes. Absolutely nothing is faster.
<stepping up on my soap box to finish>
An average day? What's an average anything? Take a look at the yin-yang ----> You see that black line between the yellow picture and the blue? That's average. Somewhere in between the good and the bad. Bad things happen on good days and good things happen on bad days. The line is thin. There's no such thing as average. It's about balancing.

Every day could be a good day or a bad day depending on which side of the line you are viewing it from. After all the average line is thin by comparison to the two halves. Not everything that happens during a day is bad nor is it good. 
Normal? Average? My question is why choose? What is average for me might be different than your average day. Disability and limitations aside. Everyone has something that disabled them. Some more visible than others. Every day is how you view it. Why be average when you can take each day as it comes to the best of your ability. Make it your day. Your way. The best is all you can do. Why be ordinary when you could be extraordinary?

Sunday, January 25, 2015

Sunday Stroke Survival~ OT-The Other Therapy

I've always thought of OT (occupational therapy) as the other therapy. I've even discounted the need for it because has to do with adapting rather than recovery. There. I said it. I apologize to Rebecca and Amber, both truly gifted OTs.

I'm a results orientated person. While I'll study the steps to get to a certain point, it's getting to that point that's important not settling for less. In this respect, PT (physical therapy)is king while OT is the lowly jester. OT gives you a sense of accomplishment while on your way to the bigger goal. It also catches you when you tumble while shooting those bigger goals.

For example, I'll use my spastic arm which I've been in OT for over a year. Mainly we are doing stretches to ease my spasticity. If the spasticity can be reduced, then there is hope for recovery of my upper arm function. That's a major goal for me. The relaxation and extension of my elbow is either all on or all off at this point. But we are working on this.

OT is learning how to function while on your way to your goals. In my mind it's a stalemate action. Functioning while waiting for the next breakthrough.So it's settling for what you got.  Well not totally, but still it's like plateauing in progress. Nobody really wants it but you have to deal with it.

Occupational therapy deals with ADL (activity of daily living). How to adapt. I don't want to adapt but recover, but until I do I need to know how to take care of my daily needs. The longer I go post stroke, I find all sorts of show-me-how type questions to ask my OT. They aren't basic ADL type questions either. Most of the basic ones have already been answered. Unfortunately, she doesn't have the answers for me. Like washing the outside of my glasses. But what she does do is allow me to use her as a sounding board for possible answers. We bounce ideas off each other until we come up with a plan that works for whatever I want to do.

This increases her knowledge base and adds oil to my squeaky cogs in my brain. Sure I still want to recover everything I lost with my strokes but I realize it will take time maybe even decades. Until then, I want to increase my know-how-to-do-it base of knowledge. I'm adding more and more data into this file each and every day. So I can function beyond my basic ADLs and expand into my survival mode again.

There are many things in my Are You A Survivalist or a Prepper? book that I can no longer do without help. Too many things require two functioning hands to accomplish, but I get by doing all that I can. If I had to set up my solar panels and water catchment system now, it would be almost impossible. I would find it difficult to dig a well for  fresh water. But I can purify it into potable water. I can grow vegetables and fruits to feed me and my family. I still have the working knowledge.

An ordinary OT couldn't answer these how-to questions for me. They didn't have the basic knowledge to advise or show me. I had to figure out a way on my own. Butchering rabbits and chickens was slow going, but I achieved it. It may have not been a perfect job, but I did it.I'm just thankful it wasn't twenty or thirty of them at a time instead of four.

The OT in the rehab hospital couldn't tell me the best way to cook on my rocket stove or solar oven for this very reason. At home, this is all I had to cook on. I had to buy a toaster oven and rice cooker when I came home and eventually a standard stove. But now after almost three years of trial and error, I can cook on the previously mentioned things again.  Yes it takes many more steps to do it all than before, but I can do it.

So I'm looking forward to Spring time and a new garden full of vegetables and herbs, chickens, and rabbits. I know I can do it. My OT is curious enough to want progress reports on how I do. Do I expect to trip and fall, and have trials and errors? Oh yeah, I do, but it's all part of my learning curve my OTs have taught me. The OTs have prepared the soil for me to plants my own seeds to sow and even succeed at it. To me these are my extended ADLs. Beyond the basics.

So watch for updates here as I use what was originally shown me marry what I knew in self sufficiency occupation.  For me, these were my activities of daily living and will be again. My grandsons built me three new elevated raised beds for Christmas. Perfect for my new herb garden. I do love fresh herbs to cook and make medicinal teas with.

The occupational therapists can only take you so far. That is as it should be. The rest is up to you. What ADLs do you do that they didn't teach you after your stroke?

Nothing is impossible with determination.

Thursday, January 22, 2015

Thursday's Tumbles and Stumbles ~ The Wet Pine Straw Incident

Last Sunday you read about my hospice dilemma. So you know I've been taking my own
trash out and then wheeling it to the road. It does sound like much, but I want you to consider my home sits in the middle of an acre of land so the driveway leading to the road is more than a couple of feet. It's more like 200+ feet from my garage to the road. From my front door to the trash cans is sixteen feet.

It being winter in southeastern Georgia, we don't have snow, but we get rain. Of course, the pine trees are doing their part by dumping loads of pine straw as wide as they are tall. When pine straw gets wet, it's slick so I always take extra care when walking on it. It's almost as bad as walking on salted ice. Slippery with a little bit of traction...just to put it in perspective for you yankees. (grinning)

Now imagine little, ol' me pushing a dumpster almost fully loaded (under 50 lbs) down a long driveway covered in wet pine straw. Not one but two of them (one regular trash and one recycle bin). The bins aren't small and the handle comes just below my chest. The wheels catch on every pine cone and twist the can throwing my balance off, because I'm using the trashcan to balance me rather than my cane.

I'll stop and get my balance back before I go forward again. Another foot achieved, and then *bump* another pine cone. This one was flattened by my car wheels. Except this time the wheels of the bin hit an open spot of pavement and kept rolling. Forward went the trash bin and so did I before I could catch my balance. I'm stepping and shuffling like mad to keep from falling.

I was mentally patting myself on the back when it happened again. This time I was not so lucky. This time the trash can was tilted back so the wheels would roll and it kept on leaning and carried me with it. My feet sought traction on the wet pile of pine straw beneath my feet and found none. I went down to the driveway in a half split. The trash can conveniently landing on one of my outstretched legs. You guessed it. It was my leg clad in my AFO and my functioning leg up underneath me. It was a sight worthy of a Kodak moment.

There I sat on a pile of wet pine straw. Rain water soaking through my pants in 36 degree weather. I wanted to cry. Not from being hurt but in frustration. I rocked and pulled my functioning leg out from under me, and then proceeded to kick the living tar out of the trash bin to get my other leg free. The kicking definitely eased my frustration, but it also used needed energy stores.

I stretched both legs out in front of me while I regained my composure and compiled the energy it would take to flip my fat behind over doggy style so I could stand up. The cold was quickly eating up my reserves. I used my feet to clear an area of pine straw before trying to stand or I'd never get up.

I was standing. Wohoo! Upright again! I flexed my skinned knees and hands while I glared at the trash bin. I was tempted to leave it where it lay. I kicked it again for good measure and said some not nice words to it. Finally, common sense won out. I couldn't leave it in the middle of my driveway and it wouldn't be emptied unless it was by the curb. I picked it up one handed by bracing it with my knee. Sure it threatened to open up and dump it's load, but my will was stronger.

I pushed it the last eighty feet to the curb. Saying a few choice words to recycle bin, I pushed it to the curb without incident. Hobbling into the house to tend to my wounds, my hubby calls to me. "You forgot to empty my trashcan."

"I'll get it for next week's haul," I answered as I made my way into the bathroom. I know he didn't hear me because I was in the hallway when I said it. All I wanted was to get the scrapes cleaned and put on some dry britches. Everything else could wait.

So that's the story of the pine straw incident. How have your tumbles and stumbles been this week?

Tuesday, January 20, 2015

Redefining Disability Project ~ Post #14

Question #14

Describe a bad day.
Oh boy! Remember Rose, you asked for this.
It starts before I really am awake. I'll try to roll over in the bed. My back will protests with more than the morning's usual Rice Krispies (snap, crackle and pop). In fact, the act of rolling over to the edge of the bed to rise is almost impossible without the aid of a combination of using the headboard, a foot hooked at the edge of the mattress pulling me over the edge to a falling standing position. But before any of that, I've got to don my knee-high compression hose, my AFO and shoes or I really will hit the floor unable to stand. After a few attempts, I can.

I'll walk to the bathroom hunched over like a 100-year old woman. I'm older, but not that old yet. I'll kick out of my pull-up diaper because it was impossible to hold my urine through all my gyrations of getting out of the bed and walking twenty steps to the bathroom. Then more of a exotic dancing to get myself wiped down and into a dry pull-up, and put on my shirt and pants.

I'll continue the bump and grind routine until I'm fully clothed. A quick glance in the mirror shows signs of a rough night of cramps due to my spasticity. A head of hair going every which way. I'll wet a brush and try to brush it down. Finally in disgust at my unruly hair, I'll hobble the fifteen steps to my office down the hall. I turn on the light switch only to be greeted by a flash of light, a popping sounds, and total darkness. The bulb in the ceiling light fixture has blown. I'll waddle to the desk light to switch it on, kicking the rolling executive chair in the process with my shoe covered toes.

Glancing at the wall clock, I'm two hours late taking my medicines and my husband is an hour late taking his. I mentally stumble over the revised medication times for the both of us and I haven't even had my first cup of Earl Grey yet. I can already tell, it's going to be a multi-cupper day.

I administer my hubby's morphine and other drugs, and make him a cup of Colombian coffee. Nothing fancy just plain, good coffee and a cinnamon roll for breakfast. I grab a low-fat Greek yogurt and a plastic spoon and head for the office again. A quick stop at the hall closet I hook the step stool on my shoulder as I go. Years of experience told me to always keep a package of light bulbs in each room.

I sit in the darkened room and finish my first cup of Earl Grey and the yogurt, and set up the step stool. I mount the first two steps holding onto the back of the office chair for balance. I just raise my left foot when I hear, "Help! God, help me!" come from the living room where my husband is stationed.

I slide down the two steps and made my way into the living room in my old woman shuffle. He is lying in the bed with his coffee cup turned sideways. Hot coffee has spilled all over him, the bed, and was now dripping onto my wool carpet. I snatched the blankets and sheet off his bed one handed, and threw them across the room in the general vicinity of the hamper. Unbuttoning his dress shirt, I found the coffee had soaked through his under shirt too. I'm stripping him naked, wiping him down as I go, and putting fresh clothes on him again. I had no sooner gotten him dressed than the laxative I'd given him the night before started working. A wet sounding fart, and then a gurgling sound hit me before the stench. A really bad day consists of four or more of these.

An hour later, he is resting comfortably dozing in his nice clean bed while I make my way back into the office the change the light bulb except now the Clonus tremors start in my paralyzed leg. There's no way I can climb the step stool with that going on. I'll just have to answer my emails in the dark. I could open the blinds and the drapes but that would mean reaching across my desk to reach them.I contemplate a pain pill but discard the idea. Today was therapy and grocery shopping day. Right about now, I'm wishing I was Jeanie, I Dream of Jeanie, blink and nod my head, and all of it would be done.

I've run out of ink in my printer so I hand write my grocery list and head to the store. The list isn't that long about a dozen items. I should be done in no time. No riding cart when I entered the store so I sit and wait for one. I could push a shopping cart and walk, but it would take me twice as long. Finally a cart. I jump on and make my way through my list. I'm about three quarters done with my list when the cart begins to make that ominous beep of a low battery. I grab the nearest stock person and ask if they will get me a shopping cart. I transfer all my groceries to the cart and continue shopping. Luckily, this was not a major shopping day with forty items or more. Why is it when you are going to the checkout in a store EVERYONE else decides to checkout with you and beats you to the register?

I get home and hear my husband say, "Thank God, you're home!" As if I had been gone for hours instead of twenty minutes. That simple statement forewarns me that he's having a panic attack with his racing heart beat and very low O2 sats because he can't breathe. I'll have to sit and talk with him for fifteen minutes while his ice cream is melting in the car. Eventually, I'll be able to go out to the car and get the groceries. I'll put the cold stuff away and check on him. Really that's just an excuse to plop down in my rocking chair and rest for a bit before I put the rest of the groceries away. These attacks happen when I'm away from him more than fifteen minutes. Even if I'm in the next room. Up to five times a day makes this a really bad day.

Meanwhile, I'm still dealing with the back pain. Combined with the end of my Botox cycle, my arm will spasm nonstop. My shoulder is screaming at me to move except the other muscles won't let it. My leg starts with Clonus tremors, it stops, and then start again. I look longingly at my Tramadol sitting by my computer... knowing I can't take it and function. All the muscle relaxers I'm already on make me drowsy enough.

I look at the clock and it's only noon. I still have the afternoon and evening to go. This is a bad day.

Sunday, January 18, 2015

Sunday Stroke Survival ~ I Got a Stroke This Week

Before everyone panics, it wasn't a brain stroke but one of those loving feeling kind. It's been a really rough couple of weeks with my husband's hospice care. The days ran together so much that I almost didn't blog this. Yes once again, this is another take on the subject.

Often, we stroke survivors rarely think of the word "stroke" without relating it to its medical meaning (noun) instead of a verb. Like a lover's touch against the side of your face, a gentle encounter. A physical or emotional touch that leaves you with a warm, glowing feeling from an accomplishment praised or from an outsider's understanding exactly your point of view. It's been so long since I received one from someone not in my family, I didn't know how to react except having tears running down my face. No not from my PBA this time, but gratitude.

My housekeeping skills deteriorated with my strokes. I clean, but miss the corners and there are just some things that get left undone because I have difficulties doing it, or can't and it has to left for others to do. My house is not a total mess, but it isn't exactly tidy either.

The dishes are washed but I rarely put them away because it will take too much energy to do so or it would be difficult to put them in their proper place and get them out again. It's my energy saving way. It is just us after all and only I am doing everything. It's a sacrifice. I personally hate it but accept it.

When I sweep or mop, it's mostly spot jobs. I don't have the time or energy for a full clean. At least not before being interrupted by someone like my hubby with a long involved request like can you come talk to me. I often lose track of what I was doing. Just vacuuming the living room is a full day job, if my husband can tolerate the noise. There isn't a single cleaner on the market without a smell. My husband barely tolerates cooking smells without gasping for breath and that smells delicious.

So in the long run, it's not laziness but adaptation, concessions, and energy conservation that rule my day. So what is all this leading up to? My trouble with hospice. They canceled all CNA/aide service because my house was putting their aides in jeopardy. Apparently, two of his aides had been bitten by something over the past YEAR of service and had to go on Workman's comp.

This had me scurrying around carrying hospital basins full of water to bathe my hubby. I was trying to shave him and finally gave up. He would just have to wear a beard again. Not to mention hauling trash bags out of the house involving multiple trips and putting it out on the street for pick up...all time consuming tasks one handed and legged. Now, I know some of y'all survivors do this regularly and say, so what? But for me, it rare since hospice came on board. Just too much juggling. I also had no reprieve from my hubby's care...isn't that why I called hospice in the first place!

In between time, I was calling hospice trying to straighten out the mess. I was shuffling between the social workers, director of nursing, the administrator, and even corporate. They kept saying my house had fleas and had to be fumigated.  I'd have to make arrangements for my hubby to be put in the nursing home for a few days, me and my animals had to move into a motel for a couple of days while they basically tented the house. Afterwards, I'd have to strip everything down and clean it before I could bring my hubby home and repeat the whole process two weeks later. The cost was $125 each visit by the exterminator.

The kickers were I don't have fleas in my house and we hadn't been bitten by anything. Neither had the social workers, clergy, recert nurse, nurse or anyone other than the aides! I balked after two weeks and threatened to call for a State inspection/review. Yes, my previous employment at a nursing home had some advantages. I was fighting mad. I even strongly considered changing hospice providers. The only reason I didn't was the stress and anxiety it would cause my hubby. He loves his nurse and the rest of the staff.

We finally got it all straightened out and CNA services have been restored because of an aide from another county who'd taken care of him on occasion volunteering to care for him. Yes, she would be paid for her services by the company. She had her first of regular visits with my hubby on Friday.

I greeted her at the door with a giant hug.We both thanked her profusely. Eventually, she'd heard through the grapevine what the company was doing to us courtesy of my #2 daughter being very vocal about it at work. This aide was outraged and volunteered. Talk about a godsend and answered prayer.

She came in and hugged us both. She'd driven an hour to get to us from her county to be with us and care for my hubby. She explained how she talked to the administrator and director of nursing. How I didn't have fleas or anything else. How we were the best type of clients to have. How, yes, the house was messy but she'd been in far worse and at least I was attempting to keep the house clean. We were just two elderly folk who needed help to do these things and had none or limited access to.

As she spoke the tears rolled down my cheek. At last, somebody who didn't judge or feel sorry for us. She saw things as they were and didn't mind voicing her opinion about it...just like me. Somebody, an outsider, who truly understood that I was doing the best I could do with what I had left. No everything wasn't perfect and probably wouldn't be ever again, but that's okay. She even offered to come over on her day off and hit the areas which had fallen through the cracks. God will surely bless this woman because she offers her service from her heart and because it is right to do so.

Nothing is impossible with determination and getting fighting mad doesn't hurt either.