Sunday, November 23, 2014

Sunday Stroke Survival~The Mouth Piece or Lip Service

Ever since I was an infant, I loved the sensitivity and tactile pleasures of things in my mouth. Fingers, toes, pencils and a few other things. This is one of the problems with my weight being so out of sorts.But since my stroke this love relationship has taken a turn, into a living need to get things done. My love affair has diminished over the last two years to become a semi pleasurable experience of living a life with one functioning arm and hand. My mouth has been my other hand.
This one is full of clothes

It's the only way I've found to tie full trash bags tight. UGH! I use the cinch, drawstring bags. Holding it against my leg to tie it never ties it tight enough and getting them unfolded after they come out of the box is challenging at best because of the heat crimping that holds it together. Luckily due to recycling and composting it's only three bags a week.

Using my teeth to twist off stubborn caps like on toothpaste. Somehow, anything mechanically screwed on, that is supposed to be twisted off gets harder and harder to twist off. While I could position the tube at my waist, hold it tight with my belly, and twist it off that way, sometimes the tube just twists instead of the cap. Only five more tube in my pantry like this because the rest have flip tops.

Any zip locking bag type. Closing it I can place it on the counter and use my affected elbow to hold it in place, but opening it in the first place...into the mouth it goes.

My husband's heater needed to be plugged in. Of course, the closest outlet was behind my side board. I bent over at the waist and tried to plug it in. Drat my short arms. Maybe kneeling I could reach. Nope. Okay, so I'm now lying on my back to see and reach the outlet. With my teeth, I held the plug so my hand could move my Cherry wood silver chest. Success! But then I was trying to get up from that position between the side board and the dining table. Remember the AFO foot doesn't bend and has to be flat on the floor to hold me up. I shimmied on my back to a clear space, got up, and turned on his heater and was greeted by his heater was on the fritz. Back to Tractor Supply to buy another one. Down on the floor, plugged it in, and finally when I turned it on I was greeted by heat. The room was a toasty 77 degrees instead of 65. After I did all of that, it dawned on me, I should have plugged in an extension cord instead, but there was no way I was going to lay down and get up again to do it right then...maybe next week.

My lips and teeth have held onto things while I've opened doors, or had my hand full. It sure beats carrying one thing at a time to and fro. With the Botox for my spasticity finally kicking in again, I can hold things under my arm again. What a blessing an armpit can be.

On a lighter note of lip service, Monday through Thursday found me crying more than laughing because of frustration. Thursday about mid morning, my #1 daughter popped in. She lives an hour away. "You've got me until 2:30. What do you need?"

This time I had tears of joy running down my face. I hugged her tight and asked her how did she know that I needed her? She said she got this undeniable urge to come home. God answers prayers. God bless her. She changed Terry's bed again because of another mishap. Put clean sheets on my bed. Took the clothes to the laundry for me. Vacuumed the carpets. Dusted the ceiling fans, walls, and ceiling. Cat changed burned out light bulbs. (All the things I can't do because it requires me to look up  ) She took out all of the trash and put it on the road. She even had time to spend and cared for her stepfather while I got a nap in. I felt like a queen for a day. She even went out for lunch! I'm smiling again and back to my old self. That's what four hours of down time will do for you.

Nothing is impossible with determination and faith.

Thursday, November 20, 2014

Thursday's Tumbles and Stumbles

I'm trying something new here with the Thursday's blog or maybe just for today? Who knows. Just to show y'all I'm only human and not to be someone put on a pedestal, like some of you have. I have my fair share of melt downs, trips, stumbles, falls, and down right crazy stuff go on almost every week.

This past weekend was horrible! Friday I saw my therapist for the last time until after my next scheduled Botox series. It was pitiful session. For almost a month now the Botox was wearing out. I had canceled six therapy sessions before Friday's session because of it. I had 15 degrees of movement in my arm, elbow, and wrist. That's not 15 degrees less motion but only 15 degrees of extension total. Still, that's an improvement. But my fingers surprisingly enough, will still extend. That is a definite improvement over the fingernails cutting into my palm, tight fisted I was having.

Saturday, I felt like warmed over leftovers. Not the good kind like soup or spaghetti sauce, but the kind that makes you want to gag just looking at it. But there were things that had to be done and I'm the only one that can do it. Being in constant pain with the spasticity, waking every two to four hours to give my dear hubby morphine, and poor sleep in between, I awoke not in the greatest of condition or mood.

I peed myself getting up to go to the bathroom. Even my pad couldn't hold it and it was running down my legs and into my AFO. Another mess to clean up. *sigh* I pulled my granny, flannel nightgown off. Have you ever had a broken elbow and shoulder casted? Then you know the contortions I went through just getting that night gown off. I wobbled onto my shower chair, preparing to shower when I hear, "Honey, are you awake?"

I put my AFO and soaked tennis shoes on and walk naked into the living room where my hubby is. One major advantage to being an empty nester. He had spilled his Coke Zero. The blanket, sheets and him were soaked through. I pulled out a clean set and changed his bed. Then I got him a clean flannel shirt on and briefs after I bathed the sweet stuff off of him. Mind you I'm still naked except for my tennis shoes and my AFO, and the house is a chilly 65 degree because of the arctic blast. Between his heater and the oxygen condenser the temp around his bed was 75 degrees, but on naked flesh it was chilly work. I got him another Coke and headed for my shower asking him, "Please don't spill this one until I'm done."

I take my shower. The hot water was heavenly. It also loosened up some tight muscles that were cramping. I was feeling sheepish for chastising him for spilling his drink. It's not like he did it on purpose. But as a semi paraplegic caregiver, sometimes your feelings of being overwhelms you. I donned my clean granny underwear with a fresh pad and hobble into the bedroom. It's just easier getting dressed in bed.

Gratuitous boob shot <lol>
My sports bra and sweater decided to get in a wad just past my shoulder blade. I'm twisting around on the bed trying to get it loose. Picture-hot, young, sexual escapades- and you come close to the movements I was doing to get them unstuck. Not bad for an old broad. Finally I get it right. Then came the compression hose, my AFO, my pants, and tennis shoes. After thirty minutes, I was dressed and exhausted. I was thinking about a nap, but my honey-do list awaited.

I went out to get the mail. There it was, my response from my SSI application. DENIED! My hubby's retirement put us over the limit to qualify. Half of his retirement check goes to pay for our medical insurance and the other half buys our drugs, but we make too much money.

This was the final straw. I sat on the end of my hubby's bed and cried. Not just a stream of tears, but gut wrenching sobs. I was beyond frustrated. My hubby, blessed his damaged heart, just handed me tissues and rubbed my arm saying, "It will be okay. It will work out."

A couple of hours pass with me cleaning the kitchen, feeding him, the rabbits, the Guinea pig (I grow fodder for them), all the medicines were passed out his and mine, and I finally felt human enough to venture out the front door to face the public. My little heater in my office that does double duty between my office and my bedroom died. It is Murphy's Law in action today.

I had to go to the Tractor Supply to get my little pets some special hay that they like. There wasn't a speck left in the last bale. Even fresh pulled grass and weeds didn't interest them. Well, it did but not as much as the hay does. They get quite vocal if they don't have it. At least the Guinea pig is. The bunnies just hop from level to level nonstop, frantically sticking their little noses through the cage every time I passed by.

I actually found my new heater at Tractor Supply also. The new one was the same price as I paid for the one that died three years ago. In total I spent $37 for the bale of hay and the heater. What a deal. Extra Bonus. My hubby's mouse had died so I stopped into Fred's, it was on my way home too, and bought him another one plus new headphones. They were on sale too. Do you know how hard it is to find computer mouses now that everything is touch screens? Fewer and fewer places carry them. Under $15 and I had replaced what died taken care of.

The next stop was groceries, ugh! Luckily, it was only 19 items. Staples mostly and a
couple quick cook meals. My hubby can't breathe with strong smells even if it smells good. Anything that has to cook longer than 30 minutes has him gasping. It's a real challenge for the chef in me. Milk, bread, eggs, turkey bacon, and some odds and ends. Unfortunately, it had me going from one end of the store to the other. Since the spasticity is back in my leg too, I have a nice blister on my foot to show for me walking around three stores from it fighting the new AFO. But on the plus side, I can walk almost anywhere without my cane.

Home again with my prizes. I kicked the plastic wrapped bale of hay into the house and where it's suppose to be. A small bale weighs 40 lbs. I didn't need a back muscle strain to add to my misery. My hubby was still sleeping. I spent an hour out and about. I thanked the neighbor for sitting with him and brought the rest of the things inside. I'm thankful that the stores have some really courteous employees that will manhandle my big stuff in and out of the stores for me. It keeps me coming back to them.

I also needed to take our dirty clothes to the laundry. Yes, I could do it at home, but I'm cutting corner. They will sort, wash, dry, and fold it all for 95 cents a pound. I would spend more than that in my homemade laundry soap, water, electricity, and a frustrating time doing it myself. Ever try folding queen sized sheets one handed?

But that can wait until Monday. I'm pooped.

Oh did I mention that I had to move an arm chair to get to the plug for the heater? I over extended and kissed the carpet (rug burned lips)...but that's another story.

Tuesday, November 18, 2014

Redefining Disabilities Project~ Post #5

It's that time again to answer another question.

#5. What are some significant moments/events in your life that connect to disability? 

This is a toughie mainly because there are so many to choose from. I haven't exactly lived a normal, humdrum life. I am, by no choice of my own, an adrenaline junkie. Well, that's not entirely true...maybe in the beginning. I choose to make a difference in whatever I'm involved in. I'll be the spear head instead of the shaft. That's my choice.

I read about an artist who was a quadriplegic. Of course I'm talking about Joni Eareckson, now Eareckson Tada, and was inspired that even with her disability she became an artist. 

Then there was Jill Kinmont, the Olympic skier, who became a
teacher despite her being paralyzed.

Who was I, a "normal" teenage with some unchangeable "disabilities." Nothing like these women faced and I could achieve my dreams also. I, like them, set out to make my own mark on life. Anything was possible with determination became my life defining, guiding star of focus.

As a teenager, I was named Junior Ambassador for the American Lung Association for Georgia. Yeah, I started early as an advocate for the underdogs in this world. Not to mention my own lung incapacitates. Who would have dreamed that later in life, I would be married to a man dying of COPD? Ironic, huh?

Later in life, I became a JRA spokesperson for the Arthritis Foundation because I had a daughter with Juvenile Rheumatoid Arthritis. Another underdog situation, I was hopping mad because there was not enough public awareness or support for these kids and their families.

I wrote article after article about it leading to my first book publication. So in the beginning, my writing career was a fluke that I came to love all because of being an advocate fighting for recognition for the underdog.

Self serving? Yes, but I took it to the ultimate levels. I didn't just sit back and take it. It taught me to be proactive no matter what came in the future. That leads me to today as a stroke survivor. I write this blog which is republished through various entities worldwide. From just the emails, I've counted ten countries so far. That's just that I know about. But by going into the analytics side of this blog, it's more like 50.

Credit My new T-shirt
Roughly two-thirds of all stroke victims survive their stroke. We all want answers, news, hope, the down sides, the up sides, and the in between. I'm no different.

It's encouraging to know "I'm not he only one." That's why I talk about everything on this blog regarding my stroke. Nothing is taboo. I also don't blow smoke up your wazoo, but tells it like I see it.

Life with disabilities is no picnic. But take comfort in the fact, there's always someone worse off than you. I always say things can be worse. Just look around you. While there is life-there is hope that it will get better.

About my new T-shirt...Yes, I won. Yes, I'm paralyzed, but I'm a winner. Yes, I talk funny, but I'm a winner. Yes, I'm jobless minister, but I'm a winner. Huh? How do you figure? I see y'all scratching your heads out there and the steam coming out of your ears as you work those brain cells too hard.

I won because I'm alive to tell the story. Yes, it might take a week to write one blog, but I do it. I might have no or limited use of one side of my body, but it could be worse. I could be like Joni Eareckson Tada, with no use of both arms and legs, but look at what she has achieved! The aphasia limits me in speaking, but I still can make my point by typing and speaking. Some stroke survivors are just learning to vocalize after ten years post stroke. I'm still a minister although I'm not in the pulpit again yet. My congregation is you. The down trodden looking for hope. Hope is the one thing I can still believe in and instill in others. Where there is will and hope, nothing is impossible.

Tuesday, November 11, 2014

Redefining Disabilities Project~ Post #4

It's Tuesday and it's time for me to answer another question in the Redefining Disabilities Project.

 4. Do you think that it’s more important to emphasize medical treatment, life skills, community integration, or a combination of these things?

 I think all of it is important in varying aspects. A marriage of all of it will allow you to be successful in finding your new path. Medical treatment for a medical problem, adaptive life skills training to help you function in new adventure, and community integration to find resources to help you out along the way. And, success is what we strive for.

While in the beginning of course medical treatment is paramount. For me, it was a stroke. Strokes kill even when being treated. Continued care is necessary because the underlying cause still exists. Even if you keep your blood pressure under control (mine was at the time of my stroke), lower your cholesterol (as low as possible-genetics works against me), eat healthier and become the ideal weight, and reduce all the risk could still have another stroke. My cousin died from his stroke and he was perfectly healthy before it. So medical monitoring is essential.

Adaptive life skills help you function with your new disability or limitation. But then again, life is full of adaptations even without a disability.

I was given a leg quarter of BBQ chicken, my first nonmechanically, chopped meal, in the hospital for one meal. I was faced with the dilemma of how to eat it. If it had been separated at the joint between the leg and the thigh, it would have been an easy thing pick up each piece and eat it, but it wasn't. It was in one slippery piece. Now normally, I would pierce it with a fork and grab a knife with the other hand, I would cut it except I only had one working hand.

I could have called the aide to cut it for me, but I wouldn't have that luxury at home so I had to figure it out. I tried to cut it without holding it and ended up with it in my lap. Thanks be to God, they used bath towels as bibs. I tried putting the leg bone end in my mouth to hold it and cut it with the knife. I will say at this point, dinner knives are horrible to cut through anything. The chicken went one way, and the knife went the other making a racket went it hit the floor. Luckily the chicken only flew as far as the edge of the bedside table.

There was no way this commercially grown bird was going to beat me! After you raise and butcher a couple hundred birds, this should be easier. I should be able to figure it out. The sauce was tasty. It was in splotches on my face and hand and even up my nonfunctioning arm. The leg was juicy evident by the amount of juices flowing from where I stuck with a fork. I ended up sticking it with my fork and twisting tiny pieces of meat off the bone. And yes, I did call an aide after I'd eaten my fill to help clean up.

The next day I asked my occupational therapist what would have been the proper way to handle the chicken situation. She pulled out her catalog and showed me all the nifty utensils out there for one handed folks like me. It had been an overlooked life skill until I asked. Sometimes, you just have to ask questions to find the answer.
I might never fully recover the function I lost with my stroke, but while I'm waiting for all this therapy to pay off, I still have a honey-do list a mile long to complete. By using what I was taught and putting my own personal thinking outside the box into action, there are very few things I can't or shouldn't do. About the shouldn't dos, there are things that shouldn't be done because of safety issues. I know it's for my own protection, but I can't help pushing against boundaries.

Outside or community resources are often an untapped entity. For me, a stroke survivor stroke group, internet resources, and transportation were things I discovered in my first ten months after my stroke. In the back of my mind, I always knew they were there or something like it. I've pretty well found a wealth of resources for whatever I've needed for the things that I can't or shouldn't do. 

Driving to therapy appointments and the grocery store was impossible the first few months after my stroke. I had to depend on my children. But there were times that their work schedule interfered. I found a community transport that for a small fee would take me where I wanted to go. We don't have public transport in this town. Everyone drives or takes taxis (expensive!). But driving with my left foot and adding a knob to my steering wheel made driving again possible for me. Of course I had to build my confidence up to drive alone. I also found my seat belt made it impossible to turn left far enough to see clearly on my left side. A doctor's note exempts me legally from wearing one.

You are never alone. There might be someone in the community or internet who has walked in your shoes, and may have a solution for you. I'm constantly saying, "I wish there was..." I search and behold. The answer is apparent. 

But with all this information, and trial and error you go through, remember to pay it forward. What do I mean by this? You've gathered this hard won help. Now share it. That's what I do as part of my blog, peer visitations, and survivor groups. I share with others that can use the help. Don't just sit back and assume that you can't possibly be helpful to others because you are still going through the transition. You've learned more than someone just starting out on the journey. You've got a lot to offer. This is probably the most important community resource around.

This ends the fourth installment of the Redefining Disability Project. Tune in next Tuesday for another question and my answer.

Sunday, November 9, 2014

Sunday Stroke Survival ~ Blocked Cog in the Works

After a stroke you may have some cognition problems. Something is keeping the cogs in your brain from turning...mainly dead brain cells. What in the Dickens does that mean for us?
[kog-nish-uh n]
1. the act or process of knowing; perception.
2. the product of such a process; something thus known, perceived, etc.
3. knowledge.
(courtesy of

Uh oh, there's that word again...perception. I've often talked about perceptions in this blog. How you perceive things. How others perceive things. The possibilities of perception. The negatives and the positives of perception.

Along time ago in a psychologist class, the professor emphasized the difference in perception with a simple test. He read the instructions of how to draw what he was picturing in his mind. You try it along with me and don't jump ahead.

1. Draw a horizontal line.

2. Draw a vertical line.

3. Draw another horizontal line.

4. Final step, draw another vertical line.

What did you come up with? 
Was it a square? If you did, like I did, you were in sync with his mind. You shared the same perception as he did. If you didn't you had a different perception of what was being asked. Let me tell you are not alone.

After my stroke I had a hard time connecting the dots. In this image, what do you see without actually connecting the dots? The thought process or decision making time. Are the lines straight or curved. I saw a flower when it is actually a sun just by looking at the image. It's just my Abby Normal self kicking in when I see a puzzle like this is to guess what it is before I actually take pencil in hand. 

It proves that perceptions can be right or wrong. After a stroke, your thinking part of the brain is damaged. Your brain isn't connecting the dots in a normal way. The perception of who you are opposed to who you were is paramount in every stroke survivor's mind. But the cogs in your mind are not turning slowly and evenly, it more like lurching forward similar to someone driving a manual transmission automobile for the first time. Your brain lurches forward and then stops again and again. 

How many of you did this when you first trying to drive a stick shift? Don't be shy. Raise your hand. After a stroke your brain is like cogs of a machine missing some teeth. There's no way it can work properly.

But there is hope. With some mechanical adjustments (therapy and exercises), new teeth are welded into place. It will never be as good as the original or a new one, but it will work. Face it, it's hard to replace your brain, but new cells are growing all the time. Other parts of the brain take over for the damaged parts. Gradually your perception of who you are and what you can do changes into a positive focus, if you let it. Remember...

Nothing is impossible with determination.