Sunday, November 30, 2014

Sunday Stroke Survival ~ More on My Waxy, Fat-Like Stuff

Have no idea what that is? It's my high cholesterol count. Not all cholesterol is bad. Your liver produces it and it has a job to do. I mean everything in life has a purpose and cholesterol is no different. It makes Vitamin D to prevent Rickets, help digest your food, and it produces hormones. Sounds like a good thing, doesn't it? Your body needs the HDL and LDL to do its job.

But like everything in life, too much of a good thing is bad for you. Too high and it leads to trouble in you arteries. I have high cholesterol. It led to my heart attack in 2006.

Meat products are to blame, usually, for high LDL (bad) cholesterol. Sometimes as with me, it's a genetic make up. My German half not my Japanese half. No matter what cholesterol lowering drugs they put me on, my number of total cholesterol is over 250. I'm on two now too. The American Heart Association recommends a number of 100 or lower if you've had a heart attack or stroke. So I basically out of luck, if high cholesterol is listed as a fixable risk factor.

Over 80% of my food consumption is plant based now. Think 1/4 of a plate in meat, and the other 3/4 vegetables, but still my number is high. My liver, where cholesterol is produced in the body, just generates too much.

So I did some research this past month on how the liver produces cholesterol. Things like sugar and carbohydrates create cholesterol in the liver. This kind of puzzled me because I'm a diabetic and haven't eaten much sugar in years. I use whole grain wheat, rice, and soy flours to bake with so where was my body getting all these carbohydrates from to produce all this cholesterol.

Somewhere I read a few years ago that artificial sweeteners reacted with the liver to form formaldehyde and diabetics were autopsied were partially embalmed, but everybody needs a little sweetness in their diet. That is something that sets my allergies off. Formaldehyde is even used in commercially produced bread as stabilizer. Reading labels carefully has save me more than once over the years. I switched most of my sweeteners to honey. Amazingly enough, I'm deathly allergic to bee, but thankfully not to honey or beeswax.

The only major contributor I could see was rice. Asking a Japanese person to give up rice, is like trying to tell an Irishman to quit eating potatoes. Although, I did switch years ago to brown and wild rices. Growing up rice was the staple in our house as pasta is to an Italian family's house. Sure, we ate pasta and potatoes too (also no-nos as far as cholesterol goes). But whole grain pastas or veggie pasta has good stuff in them too. That's my usual preference anyhow. Potatoes and bananas are a mainstay in our diet for their richness in potassium.

So I really don't see a fix for my cholesterol problem. We actually eat very healthy in this household. There's no fighting genetics, but for the rest of y'all, it might be something you might look into. What is you triglyceride count? If you have high LDL numbers then I'll bet those are high too. Mine are actually in the good range so for me, it's genetics hands down.

I eat a lot of fish and take six triple Omega capsule (Omega 3-6-9) as part of my cholesterol lowering regime. Orientals love fish too. :o)  I'm also on Zetia, but it does nothing for lowering the cholesterol in the blood stream already, according to my doctor. Only statins will do that they say. But I've had a bad reaction to all of them. I get not only severe leg cramps but abdominal cramps as well. That's with taking half a tablet every other day. The doctors have given up prescribing statins for me. Personally, I'm thankful. My muscle spasms and spasticity from my stroke are about all I can handle right now.

So I'm basically up the creek without a paddle as far as this risk factor is concerned. I'm better off working on some of those other risk factors I can change like smoking, exercise, and weight loss because lowering my cholesterol lower than what it is, is a lost cause.

Nothing is impossible with determination--except maybe genetics.

Thursday, November 27, 2014

Thursday's Tumbles and Stumbles

Ah, yes, it's Thursday again on The Murphey Sa-a-g-g-a-a. What would be a week without tumbles and stumbles in our lives...could I dare think normal? Don't worry, we ain't normal.

Oh, and Happy Thanksgiving y'all! Today was my grandmother's birthday. There's not a month that goes by when I'm not remembering some story about Grandma or being at her house. She was a feisty librarian. Wow, she would have been 114 today if she were still alive.

Well, I got my long awaited Botox series of shots. Eighteen in all with only six in my leg. The rest went into my pectoral muscle and arm. These shots are pleasant. They hurt big time. Think of a needle piercing the skin, going deep into a tight muscle, it wiggles around to hit the area that is spasming the worst and then, injecting Botox into it stretching it. Each and every shot is like this.

Why would someone purposefully subject themselves to this torture every four months? The relief it gives is worth all of it and more. The pain that sometimes reaches 9 out of 10 becomes a 2 at best.The muscle is relaxed, but still functional or at least it can move. I'm not yelping every time I try to move my shoulder. Ever try to bend forward to stand up and not have gravity pull your shoulder?

Needless to say, I left the office feeling like a pin cushion with red freckles at the injection sites. What made it worse was the sites on my lower leg was where my AFO rubs. I got home and grabbed a large bag of frozen peas and slid it under my arm. I could still move my arm away from my body six inches without screaming in pain. That's an improvement over previous shots.That's the nice thing about frozen peas or corn, it conforms to the space allowed. Twenty minutes under my arm and back in the freezer it goes until the next hour comes. Yes, I mark the bag so I don't cook them and eat them, Silly. I was still going to bruise thanks to the blood thinners I'm on.

You know that game teenagers play where they punch each other in the upper arm as hard as they can? From experience, I know that's how my arm and leg feel for several days after my Botox injections. My roughly seven pound arm will feel like fifty pounds. But the frozen peas help, because I can't take anti-inflammatories. Each day after the injection pain wears off, I'll try to stretch and move my arm. I use it as a gauge to know when to start therapy again. I had my first therapy session yesterday. The Botox is still sorting itself out in the muscles, but I can lift the arm almost 90 degrees from my body. Yeah! Yippee!

My darling hubby, DH, has some vision problems. He says that looking out of his left eye is like looking out of a frosted window. When looking out of his right eye there are black dots and sparkling lights. The left eye is cataracts. I can see them. His right eye is something different. It could be simple floaters in the eye or on the worst end he could have a partially detached retina. The poor man is already deaf. He doesn't need to go blind too. Both problems can be easily fixed without heavy anesthesia and outpatient. I had an appointment for him with the ophthalmologist, but Murphy's Law stepped in.  The transport wasn't arranged as easy as I thought. Both the hospice social worker and I dropped the ball. Next available appointment is January 2015, if he makes it that long.

Credit
He is also showing some neurological problems. He started with tremors in both of his legs and hands. I'm sure it's the tumor in his brain is causing this. He has also started lucid dreaming and it is difficult for him to tell if he is awake or sleeping. This is probably the morphine. He jumped out of bed chasing an intruder in our home. He didn't know he was dreaming until he hit his butt hit the floor and he knocked his head on the bed frame. His hospital bed has a metal frame. I heard him hit. By the time I got to him, he was still groggy, holding  his head with one hand and his hip with the other.

I checked him out for a fractured hip. Nope, he checked out fine. I checked his head for blood. Nope, just a goose egg starting to rise. He was definitely going to feel like crap later in the morning. The only thing needing a bandage was his upper arm where he sliced it on the bed on the way down.

At this point I'm seriously considering putting the rail back on, but once up I can't lower it one handed. I'm also considering moving my lift chair into the living room or actually having the kids do it. It sleeps fairly comfortable. I slept in it for four weeks each after my Achilles tendon repair surgery and after my abdominal surgery. I would definitely be closer to him. I'm not sure which is the better option.

My DH weighs 93 pounds as of yesterday. He's dwindling down. The recert nurse calculated his BMI on Monday and his number is 18.3 (19-24 is normal) Of course, the 19 is based on a small bone structure. He is large boned. My DH's weight upon coming into hospice service, his BMI was 24. The fact is that he is burning over 8,000 calories a day just in his breathing effort. He might, on a good day, take in 9,000, but those are rare even with all the chocolate he can eat, and Ensure.

Hospice drew blood for the first time in over a year, his values looked really good considering. Highs and lows where we expected them to be given his health status. Speaking of hospice, they out did themselves on Tuesday. The aide came to give him his bath, etc. Following on her heels was his nurse. Right after the nurse left, the social worker came by.  Then, the recert nurse called and wanted to his re-certification. I told her no. She could come the next evening instead. She agreed.  The social worker didn't leave our house until 7 PM. I should mentioned at this point that my DH's recert nurse is my neurologist's nurse practioner also... so it's all in the family. The only two missing from his team that didn't call was the clergy support and the doctor!

So we continue on for another week with tumbles and stumbles.

Tuesday, November 25, 2014

Redefining Disabilities Project ~ Post #6

It's Tuesday again and time to answer another question from...


#5 Are your activities of daily living affected by disability? 


I'm not going to answer this question as suggested by giving an example of my daily life with my disabilities, are you surprised? Just typing it all out would make me more exhausted than I already am.

Well, if my disabilities didn't affect my daily living, it wouldn't be a disability. True, isn't it.

I've got a number of medical problems that impact my daily living...more than my fair share really. But I do realize that there are people with worse disabilities out there. 
My list of disabling events...
  • A bum heart that is slowly dying.
  • Lungs that have a reduced volume capacity since birth.
  • Artificial joints, and rack and pinion steering (rods) in my spine.
  • A stroke that left me paralyzed on my right dominant side and unable to speak correctly.
  • Have reduced or assorted missing parts due to cancer.
  • Have Fibromyalgia and arthritis.
  • Post Traumatic Stress Syndrome
  • Another disability I have that is not mine but impacts my life, is being a full-time caregiver for a dying husband.
  • Recovering drunk and junkie, 30 years clean.
  • Am obese 
Of all the things listed only the last one is the only one I can do anything about, but that has limits to because I lost my thyroid gland, which regulates your metabolism, due to cancer. I know, I know consume less and exercise more.


Over in my Sunday Stroke Survival blog that I write every week, I use the tagline, "Nothing is impossible with determination." Life is an adaptive process no matter what comes your way. I often use the quantifying word "yet" during my attempts and "failures." I might not be able to accomplish my goal through adaptation but it's only a temporary setback. I will eventually, through trial and error, figure out how to do what needs to be done or want to do.

Life is also a learning process and it a lifelong thing. I frequently say, 'Death is the absence of learning.' In fact, it's one of my life's guiding principles. I have no recollection of where I first heard it or who said it, but it's true. You weren't born knowing how to do everything.


Being disabled is a bump in the road of life. Each bump (earth shattering event) jars your teeth and you think about the suspension (how your life is going to be changed) of your car (your life). With each bump, you experience growth. Not the kind of growth anyone would want to have but no experience is ever wasted unless you choose to waste it.


Given my list above, I can speak to a vast number of people about the problems they are experiencing from a personal point of view and do. There's nothing more comforting when you are new to a disabling event in your life than someone who has walked or is walking in your shoes. There's empathy instead of sympathy, and it's a positive step when facing the rest of your life with a disability. Fear of the unknown is dispelled by sharing your experiences. Isn't that the basis for most fears? The unknown outcome? How will it change my life? And least of all, how will others perceive me?


What's my way of showing through my experiences? Leading by example, of course. I am here. I am doing it. I'm living my life, in spite of my disabilities, to the fullest extent that I can. Where there is ups, there will be downs. Failure comes from not trying or giving up. If ever there were an astrologically sign that fits me, mine does. Can you guess what star constellation I was born under? Aah, you guessed right, Taurus the bull. A wasted day for me is when I don't take the bull by the horn and twist it to the ground. Whatever challenge faces me during a day, whether it's changing an adult diaper one handed, opening a can, preparing a tasty meal, shopping, or even writing this blog with scrambled eggs for brains...I will do it.


So challenges, come on! I double dog dare you. You may beat me 99 times, but it's only battles in a war. It's a war that I will win. Limitations aside, I can and will do.

Monday, November 24, 2014

Blogfest Time~ You'll be Sorely Missed if You Stop

I read over a hundred bloggers a week between all the formats. But those I follow have person and special interest to me for various reasons. So picking just three out of the top fifty is difficult. See, I'm this eclectic sort of being. I rarely found a subject I didn't like.  (Introspective music humming) Focus, Jo, focus narrow the list down to the top ten. Who do always read when it pops up? Well that's down to twenty. Who would you really miss if they stop blogging? Okay, I've got those. The list is now down to five. But I can't decide which one. Settling for the old tried, but true Ene-meany-miny-mo. (Spell checker loved that.)

The three I would miss the most if they stopped blogging are...

Zan Marie at In the Shade of the Cherry Tree. She was the first writer I chose to follow her way back in 2009 and haven't missed a blog post since.

I first met Zan Marie over at Compuserve's Books and Writers forum. She was a strong, faith driven writer, pleasant, cheerful and kind. We've followed each other from the beginning as cheerleaders to each other bolstering each other up through good times and bad.

She is currently working on her first full length novel, only to discover she was writing three novels. Zan Marie's blog has expanded to include author interviews, and she's a member of the Women Fiction Writers Association. But most of all, I'm proud to be considered her a friend.

John Anderson at Stroke Survivor Tattler. How he found me was a mystery, but I expect it was through Rebecca @ http://homeafterstroke.blogspot.com/, or Dean @ http://oc1dean.blogspot.com/  is the guilty party.

John administers a blog is full of helpful information for stroke survivors like me. His collection of professional articles and eclectic bloggers helped this stroke survivor feel she was not alone. Some much worse than I and a few much better off than I am. The blogs are helpful and informative. I can't do without a weekly dose of his blog for the kernels of knowledge, tears, laughter, and hope.

He invited me to join his tribe of stroke survivors and blog in an international forum. Wow! What an honor. As if I was an expert or something other than a stroke survivor from a podunk, southern town...way south of Canada. By joining his tribe, other offers came my way for republication right of my Sunday stroke blog. Now numbering ten world wide.

Sarah Cuthill @ Furhlingskabine Micro Farms (sorry I can't figure out how to put the ulmlat symbol over the "u" in here) is relatively new to my blog reading. I've been with her a year now but she's won my respect as a blogger. Initially, I found her via YouTube for her videos on French Angora rabbits. Her down to Earth style style won me over in her videos. Yeah, I watched them all. There is a wholesomeness about her and her whole brood. From how-tos to daily living, she talks about homesteading, home schooling little Cami, her rabbits, her chicken, her goats, cooking, etc in her blog. She is witty and humorous. A little slice of life on-the-grid homesteading. Her writing style is enchanting and only an email away if I run into trouble with my fur ball. Just a little slice of life where I hope to be in five years. She's inspiring.

Now for the two that were not picked, but get an honorable mention.
Alex J. Cavanaugh who digests writing his and others, blog hops, new released books, reviews, science fiction buff, and all around good blogger who believes in paying it forward like I do.

If you haven't read his books grab them today and enjoy! Yeah, I'm a fan.


Amy Shissler @ My Cerebellar Stroke Recovery. Although this is her new blog, I started following her on her previous one that has now been deleted. She's a physical therapist who, at 30, had a hemorrhagic stroke. She has some powerful messages about stroke recovery with her grump cat humor thrown in. She is entered her third year of recovery and still in the anger stage of grieving.

That being said, she is a valuable resource. While I might be behind her by a few months as a survivor, she offers the unique perspective of a physical therapist's point of view on recovery. Agree with her, disagree with her, but I always read her.

For the other 187 bloggers I read as you post, you are a cherished addition too. Keep on blogging. I'm reading you.

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

The UGLY SIDE...
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.

The BAD SIDE...
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.


The NOT SO BAD SIDE...
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 nothing...now 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

http://rosebfischer.com/2014/07/01/redefining-disability-an-interactive-blogging-project/
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 factors...you 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.