Sunday Stroke Survival ~ All I Want for Christmas...

Actually, there are a lot of things I want for Christmas, but I ain't gonna get 'em. I realize this because I'm the caregiver in this house. You might call me Santa Incognito also because I do all the shopping and budgeting too. There is barely enough cash for groceries, house payments, utilities, and the occasional splurge for Mickey D's each month without borrowing from Peter to pay Paul. Drugs and doctor bills eat up the remainder of what would have been disposable income.

What I've been hankering for is a video camera. I started a YouTube channel years ago when I was making book trailers for myself and others. It has been gathering dust since my stroke. Being single (functional) handed takes a lot of time just doing what needs to be done. It's also a lot of trial and error on my part. What I wouldn't have given for someone to show me how to do in the beginning. It might have saved me some gray hairs. Whom am I kidding? I EARNED each and every one the hard way.

I have a lot of back to basic knowledge, and thought to start a channel on how I do things. Yes, I'd be joining a long list of homesteaders on YouTube, but my niche is different. I do it all now with only one working hand.

I raise a garden, chickens, and angora rabbits. We were almost totally on-the-grid, but off-the-grid in our home before my stroke and my husband's health downward turn. I've learned how to groom my rabbits for their fabulous wool, and yes, thanks to a fellow Raverly member, even spin that wool into yarn, single handedly. I also do everything that anybody else does like grocery shop, drive, cook, cleaning, etc. OTs can only show you so much. The rest you have to figure out yourself.

If I can do it one handed, I might just influence someone else who might be interested in doing it, but also serve as inspirational/instructional for other stroke survivors. Not that homesteading is easy. It's hard and doubly harder for a stroke survivor, but there are things that I do that have take away value.

Most of my new how-to knowledge has been garnered from watching videos on various sites and my stubbornness to do it. Let's face it, when you have an aphasic brain damage sometimes a picture speaks clearer than words. It is easier for me to understand if I hear and see the words, than read the words because of my dyslexia. So that's why videos are appealing to me. Quick less than ten minute segments that you can watch as many times as you want to. I must have watched the knitted Dew Drop Shawl video thirty times before and while making them.

Drool, drool, drool

Explanation aside, I still want a video camera because it would be easier to operate than a smart phone or tablet which would take a hand to hold leaving nothing to work with because there is only me to do it. Sure, I could run out to my local Wally World (Wal-Mart) with a hundred dollars or less and get a cheap model, but with electronics cheaper is not always better. I've been drooling over the GoPro Hero 4 video camera ever since John Anderson mentioned it to me.

Droo-o-ol, see how small it is?

It is compact and there are all sorts of mounts including one that fits on your head. This option really interested me because it eliminates the need for a tripod or hands holding it for filming. Wherever I focus my attention, it follows.

Now for the bad news, it's $400-$500 depending on the options you want. Talk about steep. It's way out of my budget. I can barely afford the head mount at $19.99. It might be worth it if I had a several thousand followers so YouTube would pay me. But I don't see that happening any time soon, but I can still email Santa...

So. dear, sweet Santa,
If you have a few extras of these GoPro Hero 4 video cameras with the head mount, I sure wouldn't mind getting one.

P.S. I've been a very good girl this year.

Notice the sugar dripping off the candy cane opening and the P.S.

Nothing is impossible with determination.

Thursday's Tumbles and Stumbles ~ Botox Troubles

Today's "Thursday's Tumbles and Stumbles" has to do with the side effects of Botox injections. They are miserable! After the last round of my Botox series, I suffered through flu like symptoms without a fever for a couple of days. I thought that would be the worse I would experience, but I was wrong. It was only the beginning.

It started about the week after my shots on the 25th. My series was done on the 20th. I was in a therapy session with my OT. It was just a vague achy feeling. What I like to call my-rode-hard-and-the-day -after. If you've ever pushed yourself past your level of endurance, woke up the next morning, and everything causes you pain, that's it except I didn't. I had a hangover without touching a drop of liquor. Sounds totally unfair, doesn't it?

Don't get me wrong. The Botox injections were working. Where I was getting 15 degrees of motion prior to the series, I got 75% movement and it was still an early return. The next week I got 90% of normal range or at least everything at mid line. This was fantastic and if I had felt better I would have been happy.

But I didn't feel well. My bladder response, have to go urge, was three minutes. There was plenty of time to get my AFO and shoes on, and make it to the bathroom. The response time after Thanksgiving weekend dropped to three seconds. That isn't enough time to turn around good, or even get up from a chair before the urine was pouring past the pad, past my underwear, and down my legs soaking my pants as it went. Definite signs of a bladder infection for me. I called my GP and got a prescription for Macrobid, an antibiotic.

But my body aches continued and intensified. I kept telling myself that it was just a flare up of my Fibromyalgia. I wasn't running a fever so it seemed like a logical judgement. I took a pain pill each night because I can't care for my hubby if I take it during the day. My left (functioning side) arm all the way down to my fingers and my leg started with muscular spasms. Not as painful as a charlie horse, but just enough pain to make me stop and say ouch.

But, my hip and spine were the worst on my right
nonfunctioning side. I will remind you that I have rods in my lower back and an artificial hip on that side. It was like the muscles were trying to move the immobile objects.I mentioned in another blog how I have to squeeze my gluteal muscles to engage my hamstring to take a step. Except now that these muscles were in constant spasm, my gait was off and the Botox relaxing the muscles around my peronal nerve, walking across the room was a problem. Bending over to pick something up off the floor was like playing Russian Roulette with my balance.

Then the wheezing started. At first it was only in the morning, but progressed into all day thing. I was having to use my steroid inhaler twice a day instead of as needed for my allergies. I was developing a head cold too. It became increasingly difficult coughing and clearing my upper respiratory track. Not to mention, the stabbing pains running through my back and hip with each cough. The stuff I coughed up was normal colored.

All this caused my heart to race more than usual. Which in turn caused me to take more
medicine to slow my heart down. I was also even more tired than usual with the added nonstop exertion. I was swelling up faster than my Lasix could handle. By swelling I mean abdomen looks like I'm six months pregnant, leg (defunct, stroked side) has major bulges on either side of where the straps are, and even my fingers. Not as bad as when I'm in congestive heart failure but close. My daily naps became a twice a day effort to have enough energy to make it through the day with the things I had to do until bedtime. Even still, time and time again, sleep was often interrupted by coughing fits during the attempt.

Through it all. I never ran a fever. Puzzled, I ran a search for answers on my computer. I had no idea which of my doctors to call...heart, arthritis, GP, allergist, or neurologist? Of course this decision making process happened on a weekend, doesn't it always? But it gave me time to make the decision. All the searches came up flu, except there was no fever or maybe an allergic reaction. Well, my memory told me that so that narrowed the field down some.

I recalled some of the side effects to Botox so I researched it. (Ding, ding, ding) we had a winner. Every single thing that was going on was listed under side effects of Botox. So Monday I called my neurologist.  The nurse practitioner suggested an antihistamine, but checking my chart she realized that I was already on three (pills, nose spray, and eye drops). So now begins the wait until my appointment time next week.

I'm actually concerned that the Botox treatments will stop because of the side effects. Without Botox, I'm destined for a life of pain and spasticity. Nobody, meaning researchers, have found the cause or cure for spasticity. This scares me because it hampers me more than my obvious disabilities. I've dealt with chronic pain for most of my adult life, but it's nothing compared to the pain I feel with the spasticity. Yes, I spent months in the beginning waiting on the approval for Botox, but the spasticity is far worse than two years ago with more muscles involved. I wouldn't be facing months but years of it with no reprieve.

So that's my stumble for this week. My darling hubby's condition has stabilized once again, or at least nothing critically or disastrously wrong happened. Thank God! I've had enough to deal with. How has your week been?

Redefining Disability Project~ Post #8

It's Tuesday again and time for a question from...
 
Is your work or school life affected by disability?

Since I no longer work, teach, or go to school, I'll have to post from an older disability story.

After my divorce, I decided to go back to college again. You know me, a forever student. I'd succeeded getting out of my wheelchair, walking with two canes attached to my arms, and was down to one cane used while walking. While I could climb stairs with my cane, I wasn't great at climbing stairs. I couldn't carry my books because of their weight, so I had a wheel luggage cart with my book bag strapped to it.

Knowing my limitations, I carefully chose classes that were downstairs or there was elevator access to the classes. Dragging the cart up and down stairs with me walking with a cane was down right dangerous. There was one building that did not have elevator access and had classes upstairs. So I made sure I had none of my classes there. This was before ADA came into effect so there was very little recourse.

I was excited to be in college again. Brain power was my equalizer over a disabled body. I always did pretty well grades wise in college, if the National Honor Society is any indication. I chose Study Skills, which was a technical credit class because I had been out of college for ten years. It was the third day of class and there was a note on the door saying the class had been moved to the gym clear across campus. With a sigh, I walked over to the gym only to find the class was upstairs.

This was the one building without elevator access on campus. I looked up at the stairs.Knowing I couldn't make it to the first landing of the dog legged shaped stairwell. I finally made my way back to the Student Union feeling old beyond my years, and frustration and anger building to the breaking point.

I went to my usual table and a couple of friends were sitting there. I slung my wheeled cart towards them and it hit the wall as I sat down. I began blubbering like an idiot, angry tears streaming, unchecked down my cheeks. "I quit! I just can't do it!" My friends rushed to my side trying to find out what happened. Eventually the story came out. One of my friends ran upstairs to get the head of Student Affairs while another one ran to the girls restroom for some tissue.

After talking to the Vice President of the college, he assured me that it would be straightened out. He allowed me to wash my face, called my adviser, and then took me to the President's office. He explained my predicament. My adviser explained how we had looked at each class' location before registering and how we allowed travel time between classes so I wouldn't be late. The President listened carefully and then asked me how to make it right.

My demands...
1. More notice that class locations before changing them especially with handicapped students attending.
2. That the class that was moved upstairs be moved downstairs so I might attend.

He, the President, thought about it for a moment and agreed. He also arranged for security in their golf carts to take me to class and take me to my next class. He noted that I wasn't the only student with disabilities attending classes. They also might have needs that weren't being met. He looked me square in the eyes and asked if I minded being his liaison between the campus and these students. After what I had been through, I readily agreed. I became the first disabilities liaison person for the college before ADA made concessions mandatory.

In the first meeting between the students and myself, I was told several easily fixable
concessions and one harder one. I went back to the President with these problems. Within a week all these problem were solved. Each quarter afterwards, new students came with issues. They were weighed and always granted.

The extra wheelchair ramps took some time to complete because as a state agency they had get approval for funding and put the job out for bids but they were built as were automatic doors. We had three students who were paraplegic. By the time ADA was ratified our campus needed very few accommodations to be met. We, the students, had identified and the college had addressed most of the issues.

Oh as a post note to this story...
The student who ran upstairs to get the Vice President of Student Affairs was to become my present day husband.

Sunday Stroke Survival ~ Confessions of a Former Techie

 I was a techie. There I said it, but notice the first four words in the picture. If it was new tech, I had to get it. I got one of the first hard drive on my computer (2 meg). I was hot stuff in my computer programming classes. Everyone was so envious.

Car phones? I was the first one to get a bag phone with its own battery. Microwave ovens, 25 inch computer monitors, satellite radios, solar power panels, and the list goes on and on.

Then came the advent of cell phones. Not the big bulky ones but the small flip phones. Technology was growing so fast my pocketbook couldn't keep up. I refused to buy a tiny, blasted flip phone. Why? Because Momma/Grandma like to be out of touch sometimes. I liked it that way.

That was until I started traveling hither and yon with my company and with my hubby to his various doctors all over the country. I still had teenage children at home that needed to be monitored. Also during this time, I swore for Christmas I was going to have the home phone surgically removed from their ears too. Yeah, it was a corded phone too. That way I could always find the receiver. I didn't buy a cordless one until they all were grown and left my house much to their dismay.

I finally broke down and bought a snazzy flip phone called a Razor in navy blue. My kids were jealous at the time. It was the hottest thing on the market at that time. But within six months another phone was the hottest. The turn around on tech these days is that as soon as you buy it, it's obsolete. Matter of fact when it finally broke after my stroke, they could not pull the data off it and transfer it to my new phone. I had to pay for texting so I rarely did it.

I had the choice when I bought my new cell phone of getting a Smart phone or one like I had for free with an extension of my contract. I chose the flip phone like I had before. I didn't need access to the internet. That's why I have a router at home for with the computers.

Why? Because I was comfortable with my old phone. I really hate texting so the phone with a keyboard was of no interest to me. Don't get me wrong. I do send and receive text messages, but I hate them. Meanwhile, my children and grandchildren all have the latest touch Smart phones.

I watch them zip through this or that application or screen. Thumbs flying across a miniature keyboard and I go, "Huh?"

Now I'm for a simpler life. Who really needs all those bells and whistles to make a call? After all isn't that the original purpose of a phone? I'll continue to use my simple flip phone to take the occasional picture, or answer a text by pushing each of the 12 keys a certain number of times to get the right letter. If it ain't broke--don't fix it. And, I'm 
old or at least older. Texting gives a whole new meaning to reach out and touch someone.

Will I never get with the times and get a Smart phone? My momma use to say "never say never because one day you might." She's right. But just as soon as I buy a Smart phone wit its fancy keyboard for texting and aps, something newer and better will come on the market, and I'll still be hearing my grandchildren say, "Ah, come on Grandma. Get with the times." I still say telephones are for talking not texting. In the time I could type out a response to your question, I could call you with the answer.

Texting gives a whole new meaning to being all thumbs.

Nothing is impossible with determination...

but keeping up with the next new tech gadget might be.

Thursday's Tumbles and Stumbles ~Stop Helping Me!

The stumble of the week is being a caregiver to a man with a caregiver/helping spirit. This has actually been going on for over a year now, but it almost made me loose my cool this week.

Credit

As my husband becomes more debilitated and helpless, he continues in wanting to assist me and the hospice aides in his care. He'll struggle to change positions in the bed for better access for us while we are attending to him. This increases his pain levels and leaves him gasping for breath. Reminding me of a fish out of water. It would be funny if it wasn't so serious.

No, I don't want to disable him or hurt his ego, but things would go along so much smoother if he'd stop helping me or us.

He had an accident over Thanksgiving weekend not the spilling something or falling kind, but a bowel issue, of the runny kind. Now mind you, I only have one working hand, but I'm changing pull-ups on a 60+ year old man. He raises his bottom for me to slide a disposable pad underneath him. I was thankful for this even though I could have slid it under him without his help. I grab the wipes, scissors, and a clean pull-up from their bags and I'm ready for action.
Hubby:"What do you want me to do?"
Me: "Nothing. Just be still. I got this."
He grabs the bed rail and rolls. "Well, I could roll on by side."
Me: "No, roll back the way you were and stop trying to help me."
He lets go of the bed rail and flops on his back again. A brown stain appears underneath him.
I grab the scissors preparing to cut the sides of his pull-ups. "Don't move."
Hubby turns towards me, "Huh?"
I just manage to pull the scissor tips away from his belly as he turned. "Don't move!" and I show him the scissors. He nods and turns back onto back. The brown stain is now larger underneath him. I'm beginning to wonder if he really was easier to change a diaper on than my two-year old grandson. If this continued, I'd have to change his sheets too.

I cut the sides of the pull-ups and lower the front half.
He lifts his rear end up before I'm ready. The back portion of the pull-up clings to his buttocks for a moment and then flips mess side down onto the bed.  It was then I noticed it was only half on the pad. The other half landed on his sheets. Just as I had suspected each time he had raised and lowered his rear end, the waste was creeping up over the waist line of his pull-up. Now, both sides had mess on it. I'll have to bathe him to get it all off of him.

I let out an aggravated groan. Now I'd have to change his sheets too. I threw a blanket at him to cover up. "This mess will take a bath to clean up."
Hubby: "Okay."
I returned with a basin of warm water and soap. He had pulled his bedside table next to the bed to make it easier on me."It's warm so it shouldn't be so bad."
I pulled on the bedside table so there would be enough room for me to get close to him for the washing part. It resisted. I pulled harder. The table tilted and the bath water slid off the table. When it hit the floor, the splash upwards soaked my jeans and my shirt. Now I'm cursing under my breath as I pick up the empty basin. "Don't touch the table again."

I cleared it from the bed power cord and positioned it where I needed it. Now not only did I have to clean him up, change his sheets, but I had to change clothes too.
Once I returned with more warm soapy water, I bathed him clean. This time he didn't move unless I asked him to. I pulled the soiled pad out to cover the messy pull-up and put clean pull-ups on him. Changed the sheets before he even realized it.
Hubby: "Do you want to help me into a chair while you change the bed?"
Me: "It's done."
I picked up the soiled bedding and put them into the hamper, changed my clothes, and plopped into the chair by his bed exhausted.
Hubby: "I'm sorry, honey. I was just trying to help."
Me: "Babe, I love you, but please stop helping me!"