Redefining Disability Project: Post #17

Time again to answer another question.

Have you experienced discrimination because of disabilities?
This is a big issue for me as an advocate. All I can say is some have tried, but I won't allow it. It's like a bully picking on someone smaller, it raises my hackles. I've never been one to stand back and watch discrimination occur for any reason.

Christina and Jenn today

When my daughter Christina, #2 daughter, entered school for the first time, I asked the teacher to talk to the class about her braces. She has Rheumatoid Arthritis. From the time she was 18 months old, she wore these braces to keep the swelling from disfiguring her permanently. While she could wear her hip, knees, and arm braces while away from school, she had to wear a brace specifically designed for her to write and color with because she couldn't hold a pencil or crayons.

By being proactive and explaining to everyone about her disability and the what the cool, metal brace did, no classmate singled her out. She excelled and conquered.

Jennifer, #4 daughter, took my stance. She's learned by example. She always called herself special and unique embracing it as her own. She made others envious that they couldn't be like her. In fact if she changed her hairstyle, within a week several other girls came to school wearing the exact same hairstyle.

Both of my girls were special needs kids. Christina with her JRA and Jenn with her TBI (traumatic brain injury survivor). Initially, I paved the road for their campaigns of anti-discrimination towards the disabled. Now they continue it just like their momma.

You can try to discriminate against me for my disability, but watch out for the fight to come. If it ain't right, I'll be its champion. God gave me a voice and writing ability to make sure it doesn't happen. The message is clear. Stand up and correct those that believe in discrimination. If you can't speak or write take someone with you that can, but use some common sense. If it is dangerous for you to do it, don't.

Sunday Stroke Survival: The Latest Trend to Wear It

For the past half a decade the hottest trend has been wearable technology. The latest in headsets, hat mountable video recorders, bluetooth ear pieces, surveillance eye wear...you name it and somebody has probably made it. It's the stuff of sci-fi fans imaginings from decades past come to life.


Even televisions and radios have miniaturized into wristwatches like Dick Tracy of years gone by. Maybe it's just me being an old fart, but I remember a life before all these technological wonders. I look at all these advances as a World Expo come to pass and wonder what the future will hold. It's dreams come true for many and the demand for such products is increasing.

As little as thirty years ago, wearable computers meant this...
It got a little better with laptops. Although it still was cumbersome because you had to put on the harness and then position your laptop.


With the advent of wearable computers it looks like this...

 

Yes, I'm an old fart and fairly stuck in my ways. While I can be an innovator, those times of being first in line have long ago departed with advancing age. I kind of image myself as my grandmother who had her old, tube type radio and her reaction to...

floor model

a transistor radio with all this miniaturization of technology.

Although I keep abreast of the new technology and what is available out there, it still is shades of science fiction to me. I take the attitude; "It's interesting but I'm not going to run out and buy it." 

While I'll admit it's great, I also understand the built in obsolesce in today's technology. Within six months or less a newer, more advanced product will be on the market. Why do I need it right now? Convince me and I'll buy it. But be warned, I'm a tough sell. 

For example, I've been wanting a Microsoft Surface computer for a while now to replace my desktop and laptop. Before I could seriously convince myself to buy one, SurfacePro 2 came out. Now there's another version soon to hit the market.

If it ain't broken beyond repair, don't replace it. Is my going strategy. If I have to have it. I'll get it, but otherwise I'll pass.

Thursday's Tumbles and Stumbles: Oops I Did It Again

Yep, you read the title right. I fell down hard again. This time it was inside. Here lately I seem to be falling quite a bit. Mainly because I'm distracted. There's just too much to do that I'm taking shortcuts I shouldn't. I won't be the poster child for not falling anytime soon.

I hate falling with a passion because it means me having to pick myself up. This seems to be getting harder with each passing day. Not that it was a piece of cake before, but it was a matter of minutes instead of thirty to get myself upright.

What I hate worse is falling and my hubby seeing me do it. This was one such occasion. Between my dining room and family room is where e the large boxes my husband's hospice supplies come in. The boxes are big and wide enough that my bunnies can't jump over them when having their free open space romp. It works as a barricade. All I have to do  for an opening. There is also a one brick width step on the other side. Usually I can negotiate it with no problem even with my hot pink grocery basket in my functioning hand.

That was the case this time. I had shopped at my food stores off the family room and was making my way back to the kitchen. Through the gap in the boxes ran the cord to my vacuum cleaner. It had been a clean the animal cages day so I'd vacuumed up stray hay and pellets.ways leave the vacuum plugged in because all my plugs are usually behind heavy furniture. My vacuum has a 25-ft cord so it reaches that area of the house and the living room.

I'll bet you can guess what happened next. I managed the step fine. But the first step into the dining room my affected foot caught the cord. No, I didn't fall here. It was while I tried to disengage  my foot from the cord that I lost my balance. The shopping basket hit the floor as if I had set it down there. I tumbles backwards into the case of pull-ups.  My functioning elbow brushing against the opening and then landing hard as I did.

There I lay sprawled on top of the box when I hear, "OMG, are you all right?"
Yep I had fallen in plain sight of my hubby. I couldn't answer him because the table blocked my line of sight to him, but yelled anyhow, "Yes!"

He takes off his oxygen and struggles to his feet intent on "helping" me. He's holding onto chairs and anything else that he could grab for support while making his way to me.

Finally, he gets to where he can see me. "Go put your oxygen back on! You can't help me."
"Yes, I can," he is gasping for air at this point and turning light blue.
"You can't lift me up nor can you even give me a supporting arm. Now get your oxygen on," I yell.
"I can offer support," he said while the color deepens to a gray. He is hovering above.

Downward facing dog in yoga

I struggle to a to an AFO flat on the floor, butt in the air, attempting to drag my functioning leg into position stance. Meanwhile I'm turning my head and looking up at him, "Honey, please go get back on your oxygen. I got this."
Because I'm looking upwards vertigo sets in and I lower myself into a seated position. "Please, you are worrying and you are going to have a panic attack. At least get the portable O2." I roll myself over into the A-frame stance and stand.
"See I told you I had this. Now let's get you back to bed and on O2," said with more bravado than I felt.

His lips are almost black at this point. His eyes bore the wild-eyed look of panic. I got him in bed and put the nasal cannula on him and told him to take some deep breathes. I put the pulse-ox monitor and his finger as I settled him back. Oxygen saturation 73 and a pulse rate of 116. Not good, but his darkened color was draining down some. I grabbed his morphine and his Ativan hoping to head off a really bad panic attack. The liquid morphine would be in his system in five minutes where the Ativan could take 20-30 minutes.

"You're bleeding!"
"Where?"
"OMG! Your arm is already turning black!"
It was just a cardboard paper cut about two inches long, the bruising was another matter. It stretch over the elbow and down halfway of my forearm. Yeah, this was gonna smart in the morning. "I'll get cleaned up after you're settled."

Thirty minutes later, he is drifting off the sleep. His face was his normal ashen color and his vitals had settled to his normal. Major panic attack averted. I toddle off the the bathroom to clean my wounds...a cardboard cut on my functioning elbow and rug rash on my knee.

The next morning and for three days afterwards I felt the effects of this fall. I reminisce fondly of a time when I could fall and keep on playing instead of feeling like I'd been run over by a Mack truck. Ah, such is the life of a post-stroke survivor and a older one at that.

Until next week...

Redefining Disability Project~ Post #16

Today we have a two-fer because they are so closely related.


What are the biggest challenges that you face in regard to disability?
What do you think are the biggest challenges that your family members face in regard to disability?


We are a two person household with only me being the only one capable of doing everything or anything, I'll answer both of these at once. My biggest challenge is dealing with my husband, and just doing what needs to be done and accepting what doesn't get done.

For over a decade, my husband has slowly been winding down on what he can do. It left me to fill in where he couldn't. Up until last year, he could walk outside, get the paper and the mail. Now he can barely walk to the door. Ten steps from where he lays. Because of all his medications and the tumors in his body he is easily confused and instructing him to do anything is like talking to a two-year old in a grown man's body.

The male ego is easily crushed so I include him in most tasks even if it is only discussion. I'll ask him to open jars that I've popped the seal on. He'll cut out coupons for groceries for me. We'll discuss the bills before I pay them. We'll talk about meals even though  I've got it planned. I'll bring him my grocery list so he thinks he's budgeting even though I've done it already while making the list.

In my mind the male ego is like egg shells. Strong enough to hold the egg's contents, but can't be stepped on without exploding its contents all over the place. Similar to a man dealing with a woman going through severe PMS. One wrong step and there are explosive consequences. So I basically weigh in on all sides before doing anything. It's quite a stressful way to live, but I manage.

Able to do before my stroke

On the other hand, I have my limits because of my disabilities to deal with also. There are some things I positively can't do like clapping my hands with both hands. I'm having to adapt with almost everything I do. But there are limits to how much adaptation is necessary for a successful outcome and there are varying degrees of success. For example, I used to be able to decorate a cake or cupcakes almost in my sleep, and they would be picture perfect every time. Now, I do good if I manage to slap the frosting on where it needs to be. No matter how much care I take with the job, it will look like a child did it. I just don't have the dexterity in my left hand. I never will because of gross injuries to it in my past. I have to accept this and grudgingly do. Cake pops are me settling and achieving success.

There are many examples of this in daily life post stroke. Adaption is never as good as the original ability to do. It can be close but never perfect. While not a "A" type personality, there are areas where my drive for perfection can take over. Cooking and writing are two of these areas.

It irritates me to no end that I can't lift a pan or pot without two hands. I always have to downsize what I've planned to lift it with one hand. Every day I'm thankful that we are empty nesters instead of having small children who need to be fed, bathed and well, just about everything done for them. Yes, I do most of this for my husband, but he isn't thrashing around and fighting me while I do it. Or at least not usually. But I digress.

I cook now in small quantities for one and a quarter people or maybe a large serving for one person. So I can make things that take the now required multiple steps to prepare. I can chop the tablespoons of vegetables. For example, one large onion will make four recipes or meals for us. I can chop one half cooked chicken, a tablespoon of celery and onions for chicken salad and it will make four sandwiches...two meals for us. A two- pound roast equals  three meals and sandwiches. You get the idea.

With writing, my frustration level blows the top off the meter. Even writing this blog takes three hours just to get the words on the screen and another two in an attempt to get it legibly edited. Trying to write like I used to do is almost impossible right now. This blog is my adaption. It helps make it possible for me to write again one day. Or at least, that's what I telling myself. Yes, my typing and writing have improved over the years, but no where near good enough to attempt the simplest of stories let alone a novel.

Even with all of this, one of my goals for the year is to restart writing my nonfiction, Don't Get Your Panties in a Wad. I hear you out there,

"You're a glutton for punishment, aren't you?"
"With all you got on your plate?"
"Why stress yourself and add to your frustration?"
"Cut yourself so slack. Just chill more a while more and it will get easier."

Nope to all of the above. I'm a writer. Writers write. The frustration I feel in writing is only half as much as my overwhelming desire to write. It is almost an undeniable urge to write that only another author understands. It's almost causes physical pain not to do it. The call will be answered.

In the mean time, the challenges are met or accepted when not met. I've always taken the bull by the horns and handled it.To reiterate a slogan from the seventies, I'm gonna keep on truckin'.

What do you find is the most challenging things in your life and how do you conquer them?

Until next Tuesday, I'm outta here for the Redefining Disabilities Project.

Sunday Stroke Survival: Taking A Load Off

No this isn't me but close

It feels like all I do on this blog lately is confess my sins. This time it's about sitting too much. Hard to believe I'm guilty of this, isn't it? But it's true.

Most times it's from sheer exhaustion. At other times it's boredom. You mean you have time to be bored? Really? With what you've got going on in your house?
Yeppers, I sure can be bored. Most of the time I'm streaming shows, watching movies, and yes, even playing games, it's because I'm bored. Of course being me, I'm also knitting or doing something constructive with my hand too.

Just after my strokes, I sat quite bit because of my balance issues. When my foot decided it didn't like my AFO and erupted into pressure sores, I sat. When I blog or work on my cognitive recovery, I sat. When doing things in the kitchen, I sat.  When the spasticity in my lower leg acts up, I sat. And honestly, it's a hard habit to break. I have jokingly mentioned my six ax handles across the butt as a family trait over the years, and while I'm not as wide as the lady pictured above, I am heavily endowed.

I really can't go far to walk. I have to stay within calling distance of my hubby which compounds the problem. I can't run to get to him if I'm in the backyard. It's almost a 1/2 an acre. When I spend time with him most of it is spent sitting. Yes, I do way too much of this activity.

My New Years goal was to get off my duff and start using my exercise equipment. It sits waiting on me. I can count on two hands how many times I've been on my NordicTrack. Now my air cycle is another story. I'm on it for thirty minutes each afternoon. So I'm not totally bad. Except that's sitting too.

As a result of all this sitting, I'm losing my stamina and endurance.  I'm finding it harder to stand and walk for any great distance. It's my fault. I know this. I'm resolved to get up off my broad derriere, but tire so quickly these days because of my semi-imposed inactivity.

My life goes from a maddening, break neck pace to nothing at the drop of a hat and back again. That's just the way it is as a caregiver for a terminally ill spouse. When he's resting, I tend to rest because I suffer from chronic fatigue since my stroke. I do other things with my day like rehab exercises, therapies, cooking, cleaning, animal husbandry, and garden. It only takes energy to do it. Emotional stressors last the last two weeks without hospice and other regular stuff like paying bills take their toll too on my energy stores also. But if I allow myself some slack for these items, soon it will be filled with other things. I know me too well. I'm not making excuses for not getting off my butt and doing. Sitting is so much easier.

Anybody have advise for me? I could sure use it because I know...

Nothing is impossible with determination.