Sunday Stroke Survival ~ Ebola and Elbowla Viruses

Every news carrier globally is talking about the Ebola virus. The fact is, it has been around for centuries and it kills most leaving very few survivors. This is covered fairly completely on the web, television, newspaper, and radio. So if you want more info, please go to one of those outlets.


Today, I'm talking about another virus that strike far greater numbers and can be just as deadly when trying to put your best foot forward, the Elbowla virus...typing as with one's elbows. It is otherwise known as typos and grammatical errors that run rampant in documents.

Your mama may have told you to keep your elbows off the dinner table, but elbows don't belong on your keyboard either.

Now I have a couple excuses for my having this disease 1) brain damage because of my strokes, and typing with one hand tied behind my back. (not really tied, but paralyzed.) Still they are just excuses for sloppiness on my part.

My letters twist sideways and change position too.

February of last year was the challenge I made for myself to type one handed 45 WPM. I failed. My best was 40 WPM. Then I went and had a second stroke dropping my WPM down to 30.

This stroke I lost most of my reading comprehension without reading a sentence four or five times to make sure I understand what my eyes and brain are telling me is correct. A worsening of my dyslexia, or at least I forgot all the helpful cues I had established to read letters and numbers. I was put back to square one again, but coupled with the loss of comprehension makes reading for pleasure too much work. Forget about writing. Although this blog seems fairly well thought out and cohesive it takes me days to accomplish it.

But just like my physical and occupational therapies, if you don't use it you lose it, or at the very least, you don't get it back. For example, the word "back" in the previous sentence, I typed as "cakb" because that's the way my mind told my fingers to type it. Of course, I got the angry, squiggly line telling at me, "That ain't right, stupid!"

Most times, Elbowla virus strikes when a person doesn't know how to type, or is adjusting to a new way to type.... with one hand or a new keyboard. Or even typing while distracted.  At least that's when Elbowla hit me worse when I had two working hands. No wonder texting while driving is illegal. I couldn't do it with two working hands.

I'm a four-finger and a thumb typist, but that's better than a two-finger hunt and peck typist, isn't it? I dunno. I'd go back to the two-finger hunt and peck, if only I could. Then, the size of the keyboard wouldn't matter. So these days the Elowla virus has hit my keyboard. Part because of brain cell damage and part because I'm distracted. A focused effort will fix the problem as it would for anyone else. Focusing is hard work, but I get by. That's why I can write this blog as a literate person. This is my rehab exercise and my curing the Elbowla virus.

Nothing is impossible with determination.

Sunday Stroke Survival~ Oh My Aching Back

Everyone has an issue with their back from time to time. Either they "slept wrong" or "twisted it," or lifted something heavier than they should have without help. Sometimes even with help you get a tingling or pain that runs down your legs or up your back, or centers in your hip area.

You'll see little, old ladies stomping their foot on the ground trying to get it to stop. Notice in the picture the sciatic nerve runs in the foot also. But sciatica is not just for old folks like me, it strikes young folk too. When your back hurts and runs down your legs or travels along the path of the sciatic nerve, it called sciatica.

Most times, the occasional bout of sciatica is not a problem and short lived. It's when the problem is chronic that poses infinite possibilities of the cause. The sciatic nerve is a long one. When you do everything the specialist tells you and you are in pain weeks later after the offense.

That's what happened to me. After my helicopter mishap and my lower sciatic and half of my lower lumbar spine was crushed, rebuilt and fused, and rods put in place to stabilize it. I developed hip pain in my replaced hip.

At first I just thought I was overworking my prosthesis. I had gone back to nursing again. This time in a hospital in the post-surgical floor. With my limitations, working on choppers and ambulances was out of the question. I went to work after teaching 20 kindergarten children for eight hours and had to look forward to an eight-hour shift on the floor. Nothing unusual about that for me at the time.

The pain increased over time for about a month. I swore to myself to be kinder to my body. But with five kids at home/school and two full-time jobs, it was nearly impossible. I made a point of sitting correctly. I did my back and hip exercises as I was supposed to, but still the pain persisted becoming nonstop.

One night, the pain became unbearable. I limped and hobbled through my shift, and barely made it home without screaming out. Needless to say, I called my family doctor the first chance I got. I couldn't work like this at either job or care for my family. Both my legs had gone from tingling pain like they were asleep to lava flowing. I could barely take a step without my pain level jumping to an eight out of ten. I was not a happy camper at all.

An x-ray showed boney fragments from my spine were pressing against my sciatic nerve was. A "Hoover Vacuum" type surgery was needed to remove them to stop my pain. No, a Hoover was not used in the surgery. It's just what I called it to differentiate it from my previous procedure. My doctor was surprised I walked into his office. If I chose not to have the surgery, I was facing being permanently in a wheelchair within five years with permanent damage. So I hopped a flight to Atlanta for the procedure. Keep in mind, I was only thirty something.

The cause was degenerative disc disease. Another strong hereditary factor gone berserk. Aren't I the lucky one. If I had not had accident it might have shown up sooner or later, but the sciatic and lower lumbar had been concreted together five years prior. Now it was the upper lumbar affected and the pieces migrated down with gravity like everything else as you age. The surgery was a success pain wise, but a failure in that the nerve was damaged and I lost all sensation from the knees down. It took two years for the nerves to heal. I started getting quarter sized patches of sensation back and now only spots about the size of a quarter still remain numb. The procedure is repeated every decade or so to remove the disc fragments before they become trouble again. It's that time again but now we are in the thoracic and neck regions of the spine, but we are delaying the procedure for as long as I can. But then, what impairment is caused by the disc fragments or the stroke. It's a juggle to decide.

Now decades later, I have a stroke. The doctors all say that I was lucky not to lose sensation as well as paralysis. But I don't know. Of the two, the loss of sensation was easier to deal with. With sensation loss you just have to be aware of the position of the affected body part, but you still have movement. That just takes a quick glance and a little focused effort. With the paralysis, there is no movement. But then...

Nothing is impossible with determination.

After a Stroke~ A blog and a rant

Kate Allatt had a great post today. It was about changing the focus of the National Stroke Association and mental illness in stroke survivor. I whole heartily agree with her.

Is it any wonder why Dean considers the National Stroke Association a joke. For the past two years since my stroke, I've subscribed to their newsletter. What do I find in my inbox? Pleas for money, participation in fund raisers, and a focus on stroke prevention, ie, F.A.S.T. As if stroke

survivors had abundant loose change floating about to donate.  Many stroke survivors are in the same boat I am. Our loose change goes towards NEEDS because recovery is first out of our pockets. Fund raisers and awareness campaigns are a great thing to do for nonstroke survivors. F.A.S.T is a half lustered approach for warning signs you may be having a stroke, but why give the stroke survivor a goodie bag full of advertising. Isn't that like putting the cart in front of the horse?

National Stroke Association put that money into where the money can do the most good for stroke survivors...research and recovery, even adaption techniques would be more useful.

After all, that's the only reason I and most survivors read your site. To date, I can count on one hand how many articles were geared for the stroke survivor. We didn't die from our stroke and trying to find normalcy. Help us. Be of use to us. Sure prevention is important, but surviving a stroke is just as important.

<stepping off that soapbox on to another>

Kate brings to light another point of why mental illness is so prevalent in stroke survivors. Actually, a couple of them. Robin Williams' recent death by suicide sheds new light on depression. He's just one of millions.

In my own experience, I see this happening in my own life. When I first came home after my stroke, my children were failing all over themselves to help their poor, old mom. Granted I couldn't do much. As time progressed, the visits/help became fewer and fewer. I might see the one daughter who lives the closest once a month. The others, every six months, if that.

Yes, as a momma, I make allowances and excuses for this behavior, but really? "Call me, if you need me." But when I do call only when I'm desperate, you are all busy in your own lives and be able to fit me into your schedule next week. I understand this is an intrusion into your life. That's why I waited until I'm desperate!

My daughter came in from AZ. When I asked her to clean (knowing it would be spotless after it was done) my kitchen after a six month's absence, I got, "I told you I wasn't going to do this again."

Forget about Mom had a stroke. Mom has had a seemingly endless pressure sore on her foot. Mom is using every spare ounce of energy she has caring for their stepfather. Forget about the money she was trying to raise on limited resources to help her. Forget Mom is your sounding board and supporter for life past and present. Just nope, "I ain't gonna do it" and didn't. In fact, I saw her only thirty minutes in each of her three visits that week. Closer to ten minutes after she spent time talking to my DH (darling hubby).

When I complained, which I don't do very often, to my oldest daughter who lives an hour away, about the lack of help I got, "Well, I put my life in a holding pattern for the first year after your stroke. When do I get a chance to have a life?"

I won't ask my grandchildren to do clean or do most of the things I can't when they come (few and far between) anymore because they leave a bigger mess than when they started. Once was enough for me to learn this. It took me two months to clean up that mess.

My hospice volunteer had life get in the way. So I hired a neighborhood young man to do the yard work. After a sob story, I paid him in advance for work to be completed. He is history. I haven't seen him for three weeks. Lesson learned and pocket emptied.

I get offers from neighbors and friends near and far to help...

"If I only lived closer." (Even if I know you really mean it)
"Just call."
"What can I do for you?"
"Oh, I don't have time for that right now. Maybe next week"

Frankly, I'm tired of asking for help and not getting it. I may be two years out from my stroke, but there is a long list of things that are just a physical impossibility to do, but I still try because I'm the only one I can depend on while others depend on me too.  Now I know everyone doesn't have the same attitude I do...if you see something needs to be done, then do it. I can't be the only one.

So if you are amazed by what I write I'm doing, in spite of personal risk, please understand I'm doing it because I have to. Don't be amazed. Somethings need to be done whether you can or not. But somethings just can't be done and permanently left undone unless I can find someone else to do it. Is it any wonder that the doctor increased my antidepressant (for Fibromyalgia) to combat signs of stress/depression. Nope, not in my mind.

Sunday Stroke Survival ~ Running After a Stroke

Confession time: I haven't ran in decades at least in the physical sense. Not since I had rods put in my back, a hip replacement, and knee replacement done. Is it any wonder?

After all those surgeries plus an Achilles tendon ankle repair, I did a rapid walk rather than running. Since my strokes I've graduated from snail speed to tortoise speed in two years. I'm doing grand.

People holding doors for me or needing me for something always tell me to take my time or in a parking lot with cars stopping for me. I respond back one of several comebacks...

• "This is as fast as I can go."
• " I'm at top speed."
• " Whoosh! Did you feel the wind as I passed ya?"
• "Patience is a virtue. Learn some." (When they roll their eyes or beep their horn)
•  "I've givin' her all she's got, Captain!" (In my best Mr. Scott impression from Star Trek)

But that doesn't mean I don't run because I'm always running. The energizer bunny has

nothing on me. I keep going and going...well, you know the rest.

I am running around like a chicken with its head cut off most days.
I am running a household.
I am running errands night and day.
I am running to keep ahead of an everyday growing set of complications.
I am running towards a brighter future.
I am running in circles most days.
I am running NYC marathons each and every day although not in the physical sense, but mentally juggling items and tasks.
I am running ahead of the insanity of my life. Oh, wait! It's already caught me.
I am constantly denying the urge of running away.
I am running into walls (obstacles) at every turn.
Best of all! I am running my own funny farm. Gentlemen in white coats, please take me away.

So the next time someone say, "Oh look, she can't run anymore because of her stroke."

Yes, I am running!

I'll leave you with this...

 

Standard YouTube License

And remember...

Nothing is impossible with determination.

Sunday Stroke Survival~ Striving for Perfection

Credit

Something has weighed heavily on my heart this week. It caused me to stop and rethink my attitude of where I am in my life. I honestly do this quite often as a reality check.

The gigantic WHY question.
No, not the why did the stroke happen to me? I know why. It was genetics and poor life choices I've made.

I still say the delay in my recovery in part is due to God teaching me patience. I still don't have that battle won, but I've come a long way in two years.

No, not the why haven't I recovered more of my body by now. I'm a victim of circumstance that overloaded my "golden" one to six months optimum recovery time with an injury.

These things I knew the answer to. My "why question" deals with something deeper.Which is why it made my heart heavy. Why do I want to recover what I've lost so bad?

Previous to my stroke I'd accomplished many things. In fact, I'd accomplished more than most people in my life both good and bad. So why couldn't I just be satisfied that this is the way my life should be now? Are we as human beings always so dissatisfied with our lives that we constantly have to strive to be better? Have more? Do more?  
WHY? 
I've got everything I need. Sure I have wants but my wants won't kill me. I can take care of my basic needs for me and others. That's saying a whole lot! I came to the realization that I needed to be content with my life. Admit, for probably the first time with acceptance, that there are just some things that won't happen today, or tomorrow, or even ever. Yeah sure I want a full recovery of everything I lost, but whether it happens or not, I have to live this life and it is a gift that I was given.

I was being my own worst enemy. I was playing a killer mind game on myself. So I decided to stop. I hate mind games. They only hurt me and those around me. The mind games I'm talking about are not the same as I did when I was writing. Those are benign what-if games, but I'm talking about the hurtful ones. Yes a certain amount are useful to achieve anything like walking that extra forty feet when you are exhausted, or tricking yourself into believing you might just succeed in some task.

Does this realization mean I won't be going to rehab next week? Nope, because I still have to try to regain what I can or at least slow down my spasticity from invading my body once the Botox wears off. Every little bit helps. Every little success is paramount. It is still worthy of patting myself on the back when I wash dishes or cook dinner. Sadly that is few and far between in part due to my energy levels and in part because it increases the difficulty in my husband's breathing efforts. Most nights it is still a TV dinner split between the two of us. 

This week I've had another bout with congestive heart failure which spurred my contemplation. (heavy heart, get it?)My cardiologist wanted me in the hospital for a few days, but my home life isn't conducive for that right now. So I stayed home off my feet, or as much as I could on 60 mg of Lasix. Extra potassium and low salt on top of a less than 1000mg of salt diet. I've been eating a lot of salad instead of TV dinners which are loaded with salt. 

At times like these, I really want a catheter instead of getting up to go to the toilet every ten minutes with a full bladder. I dropped ten pounds in just fluid the first 48 hours. The good news is that I'm coughing less and can breathe easier now. My heart has settled into its usual Abby Normal rhythm. After two days I went back down to my maintenance dose of Lasix. Whew! Thank God! I dumped a total amount of fifteen pounds of unnecessary fluids in four days and I'm back to my normal heavy weighted self again. So all in all, things are back to normal.

No, I still have a damaged heart. I'm still paralyzed. I'm not in congestive heart failure for right now. My husband is still dying in slow increments. He is still on hospice services. I'm still his primary caregiver. I'm still maintaining a household.

It's just is what it is. And for that, I am thankful. So I got my answer to this WHY too. I'm satisfied and not discontented with how my life should be.

Nothing is impossible with determination.

Sunday Stroke Survival on Monday :)~ Less Tolerant with Age and a Rant

Oops, I forgot to hit publish so for this week Monday is the new Sunday.

As the years go by especially since my stroke, I find myself less tolerant of what comes out of the mouths of others.

That one line in the movie, Forest Grump... 

"Stupid is as Stupid Does"
Forest actually had more common sense in his damaged brain than normal people thanks to his momma.
It hits me in the face when I'm around other people. Is it any wonder that I prefer my own company rather than be around people? At least I know the cause of my stupidity. I've got brain damage.

Why do people think that the hardships they endured for a couple months with a broken arm or leg, entitles them to compare it to my paralyzed arm or leg? Can't they accept the fact that it's like comparing apples to oranges? It's like comparing a stubbed toe to a compound fracture.

I know first hand the trials of broken bones. I broke my wrist. Seven bones broken and/or dislocated. Six weeks total and the wrist was almost as good as new. I tore my Achilles tendon in my left ankle and spent fifty-three weeks in an air boot.

A post stroke paralysis and the spasticity cannot even compare to those. Time to healing cannot be measured in weeks but years if ever. Weeks are a drop in the bucket in comparison.

Sure with a broken limb, you might have had pain. You had the inconvenience of a cast or splint.  You had that unscratchable itch. You may have had the inability to do certain things or figured out a way to do them. BUT you knew it was only temporary. Eventually, your broken bones would heal and you'd be free to carry on with your life as before. That's the BIG DIFFERENCE.

As stroke survivors, we have no such assurance just a possibility and hope. Sure a broken limb my feel like forever but in reality it's a drop in the bucket of your life. Stop the comparison!

Word Search or What a Difference a Stroke Makes

This is not a poor pitiful me post. It is what it is.

It was 3 AM when I heard a feeble cry for help come across the baby monitor this morning. I jumped out of bed and ran I rolled over, grabbed my AFO and shoes, donned my AFO and shoes, pivoted myself into an upright sitting position, stood up and hobbled to my husband in the living room. I was holding the wall for added support because my bedtime medicines of Valium, Baclofen, and Zanaflex still had its semi-potent sleepiness effect on me.

Normally this wouldn't be a problem because  I do it so much, but this morning it was killer. Last night about 11PM my husband upset his drink all over his bedside table soaking everything including his pill box. Four doses of meds gone. Poof. Up in the air like smoke. I'd just taken my bedtime medicines. I got him into a chair, clean up the mess including changing his bed and him, and got him back in bed and comfortable took up most of the lee time between taking my meds and hitting my pillow. I was an hour late because I was working on my sister's shawl pattern to place beading on it. I refilled his pill box and made sure he took his medicine before I wobbled off to bed myself.

I found my husband standing beside his bed fumbling with his bedding and bare butt mooning whoever cared to look. I asked him what was going on after installing him into the rocking chair and putting his oxygen back on.

Little Bit, the cat, had decided to sleep with her Daddy. She couldn't lay on the bed because her older sister, Patches, took up residence in the prime sleeping spot next to him. So she decided to sleep on his bedside  table across his knees. Being a cat, she will sleep anywhere she wants and gradually push stuff away making a comfortable spot. Well, this included a Coke Zero which was a half full can when he fell asleep. You can guess the rest.

After searching through a box of thirty-year old sheets, I finally found a twin sized set of sheets. Why did I search for sheets? All the twin sized sheets were soiled that I bought for his hospital bed. He was safely enshrouded in clean sheet that bear pink, blue, and aqua flowers leftover from our children's childhood. My night medicines are now down to a dull roar and it's almost time to take my morning medicines. If I go back to sleep I'd never wake up in time to take mine or give his.

I sink wearily in my office chair. My office is now located between my husband and my bedroom. I stretch the tense muscles in my neck knowing that a headache will form if I don't. I call it snap, crackle and pop but there is a term for this. I know there is but I can't remember. It's one of know that I know because I've used umpteen dozen times before. It drove me batty trying to think of it.

I make no bones about my cognitive deficit since my stroke. I have a real problem recalling data through the maze of dead tissue...otherwise known as my brain. I'm always searching for words meaning what I want to say. After thirty minutes, the word came to me ...CREPITUS! Thank you www.dictionary.com for how to spell the word from my mangled attempts.

crepitus  (ˈkrɛpɪtəs)
— n
1.     a crackling chest sound heard in pneumonia and other lung diseases
2.     the grating sound of two ends of a broken bone rubbing together 

As an author, many of us search for the perfect word to say what we mean. I was no different. Usually it meant editing a word ten times to hit the perfect word to say what I mean and other times it sprang instantaneously in my mind. Now, after a two strokes, the words just don't come that easily. Not without a pause, a half an hour, or maybe hours of searching. 

On a whole, I'm better than I was just after my stroke when every other word was a word search. Now, it's about every tenth word so I can at least talk in full sentences. So many times I have said, "This is not the right word, but..." when speaking to others and then They will tell me what the word is or understand because of the context it's used. I miss being able to do that. It's kind of a fill-in-the-blank type thing for me now. But at least I can utter more than 100 words.

It may be delusional, but that's my story and I'm sticking to it. Now that all meds are given and taken for the early morning rounds, I'm heading back to bed for a couple hours of needed sleep before it's up again in the life of an author, stroke survivor, and caregiver.

Anyhow, that's my morning so far. How's yours going?

 

Obesity Revisited~ Learning a Few New Tricks

So yesterday I mentioned nibbling as a method of staying awake. I've found another way and this one has no calories.

I'm a creative person and a crafter from earliest memory.  I can remember sitting beside my grandmother at a quilting frame when I was old enough to stitch. Crocheting lace with cotton thread with my mother at seven years old. I first crocheted with yarn at nineteen. Also having my own embroidery hoop and floss collection at eight. Bamboo knitting needles and the like. At other times it was crafting with paper and scissors in cut work or origami. Getting my own easel and oils set up at twelve. I've crafted letters and words since I was ten years old so I became a freelance writer as an adult and author. Yes I love all aspects of crafting. I've really missed it since my stroke. Crafting is my way of relaxing like boating, hunting or wood working is to others.

I've been struggling to get my crafting abilities back since my stroke. I'm still mentally working on a way to spin fiber into yarn one handed. I presently cannot get into the garage to get to the work bench with all the tools to actual experiment building the attachment I have in my mind. This will be remedied with a yard sale now that the weather is nice.

I've struggled with knitting without two hands. The needle under the armpit method made it impossible to make small things because the needles had to be sturdy. The same thing with a needle between my knees. The cramping of muscles. The awkward positions I had to sit in to have access. Made it impossible for me to do it for long periods of time (over a hour) without having to put it down.

"Oh no! She's been watching youtube again!"Yep! I found an answer there...loom knitting. I've been at it for a month now and having a blast! I've made slippers, hats, and socks galore. For Easter, I made each of my eight grandchildren a bunny. At the back is a pompom tail and a gather stitch tied off with a bow. I placed a large plastic Easter egg inside stuffed with Jelly Beans. I enclosed some fiberfill and a yarn needle with matching yarn to take the place of the egg after the candy was eaten. I made them out of two skeins of Red Heart Light & Lofty yarn so they are fuzzy and cuddly. I think they turned out too cute and I'm proud of myself for the accomplishment. I couldn't have bought gifts for the $10 I spent for yarn and $5 for the loom.

My husband scoffed at the idea of giving our oldest grandson (16) a stuffed bunny rabbit. "That's not a guy gift! Get him something like an X-Box game or something! Geez, woman."
I loved watching him chew up his words and swallow them. Our grandson picked up his bunny and cuddled it. Then he entertained us all by making the bunny hop and talk. He twisted the head this way and that to make it more animated. Now honestly, the bunny probably went home and into a box, but he was entertaining to watch while he was with us.

Now I'm setting my sights on Christmas.I found a how-to pattern on (you guessed it) youtube for an elegant shawl for the female members of the family.  In our family gifts are usually handmade with love. Needless to say, for the past two years our gifts have been commercial. There is something less satisfying about gift giving that is commercially bought.

So this week I'll be busy scouring the internet for the right metallic silk blend yarns to make these shawls. I've only got eighteen to make by Christmas. AND not to be one sided about it, all the guys will get hats and scarves. The grands will once again get grandma knitted sweaters and other goodies. No they won't have a giant letter for their name like Mrs. Weasley did in the Harry Potter books. These are sweaters they will actually want to wear.

Yes, I'll be busy but happily so.

Nothing is impossible with determination.

More Stroke Happenings ~ Aphasia

I write quite often about my aphasia...difficulty speaking since my stroke. Here is a aphasia recovery  support group. What they say is so true. Patience is all we require when communicating with us. A very enlightening video. This is mostly why I prefer online conversations rather than phone or in person chats. I'm actually a very social creature.

I have a couple major pet peeves with communicating with others in person on a whole...

Talking to me as if I AM RETARDED. I am not mental retarded just recovering from a brain insult...you know, brain damaged caused by oxygen deprivation and blood being where it shouldn't. My IQ is higher than most I speak with, so there is nothing retarded about me.

My readers don't do this to me just people in face to face meetings. I just have a problem recalling all that stored knowledge when I want it and have a problem getting the thought to come out of my mouth that is proper and understandable. This is tremendously irritating! For God's sake, stop it.

Getting up in my face and speaking very loud and slow as if I was DEAF. I actually hear very well. It just takes me a few seconds to understand what you are saying and formulate a response.  Getting that close and yelling at me will accomplish two things; it is very uncomfortable because you are in my personal space, and two, it's jarring and further jumbles my thought pattern. Whatever response I was going to make flies out the window and has to be arranged again.

Most people will repeat the procedure thinking I didn't hear them compounding my problem. Did you check your breath before doing this? I'm just saying.You can also make me deaf by doing this! For God's sake, stop it.

Don't repeat yourself four or five times because you think I may not understand. If I don't understand, I will ask you to repeat. Now, this wasn't always the case, but it is now. Most people don't realize I have a language/speech problem until I open my mouth to speak.

Especially since my stroke, I'm a very attentive listener. Each time you speak, I will stop what I was doing (thinking of your reply) to listen to what you are saying. As you can imagine, this is maddening! For God's sake, stop it.

THINK!

Nothing is impossible with determination.

Sunday Stroke Survival~ It's All About Balance

I'm trying to find my new normal after my second event (stroke). I don't know if I can do it but I'm going to try follow the stroke e-zine guides that republish me for March. I know it isn't March yet (almost) but they will publish the articles during March. So here goes...

It's all about balance in everything you do either as a stroke survivor or not.  I know the gist is supposed to be about balancing to keep from falling but I am taking a different tact because I can. :oP

I'm going to talk about rebalancing your life. You've heard the old saying, "All work and no play makes Jack a dull boy" or something to that effect? It is so true. When you don't listen to your body other things crop up to make you listen and regain your balance.

In the hospital and when I first came home for about three months, I was in rehab mode. In fact, I had little energy to do anything else because I was exercising three times a day! I was that determined I was to get everything back. I refused to compromise with what was. I had no energy to speak of to socialize. When I wasn't physically moving towards improving my body, I was attempting to improve the cognitive function of my brain and dealing with overcoming my aphasia issues. I was an automaton. Sleep, medications, eat, exercise, and rest. All because I was told that this was the way to get it all back in recovery.

Credits

Pain stopped this nonstop routine. I had torn my AC joint in my right shoulder in a tumble. Yes, I had to stretch it to get the motion back, but nothing as intense as what I was doing before. As a result the elbow, wrist, and fingers regressed. It took a total of six months of slow, painful healing to restore the joint. While this was going on real life stepped in. There were trips to the store, learning to drive again, and visitors to contend with. I began to socialize more as my aphasia lessened. I was regaining a balance of sorts.

But I was still doing leg exercises and walking. My daily walks reached almost a mile a day. If I couldn't work on my arm then I'd have to double my effort on my leg, I reasoned. Eventually, I'd get rid of the wheelchair, hemi-walker, and cane for good, if I kept it up.  My actual physical balance was much improved to where I could walk on flat, level surfaces without anything. I was pleased! The next goal was to walk outside on unlevel surfaces without anything.

But that wasn't to be. Enter the decubitus. Walking with the AFO caused a pressure sore.  The inversion of my foot worsened as spasticity raised it's ugly head. It wasn't enough that I had to contend with the Clonus that kept me out of a Walk-Aid, but now pressure sores too. Man, I couldn't win for losing. That put me off my feet because I could only be up walking for two hours and out of my brace for four hours. I was having to relearn another new balancing act.

Before my stroke I had medical issues like a bum ticker, diabetes, and replacement joints to contend with but before I could do almost anything I wanted within reason. Yeah, there were limitations, but not like what I've dealt with post stroke. Meanwhile the window of opportunity for full recovery closed or at least for a quick recovery. Granted there is the neuroplasticity factor but that takes years!

Umpteen dozen doctor visits later, the first pressure sore healed. So I begin PT again. I was still pushing for an 85% recovery at this point. I entered the revolving door of pressure sores on my foot. To date there's been six and no possible resolution except surgery to fuse the ankle in place to get rid of the AFO. Yes, it is as painful as it looks! The swelling gets so bad that my size six foot needs a size eight shoe.

With all of this going on my husband is getting weaker and sicker than he's ever been before, so I adjust my life style further to include all these changes except I've found my balance again. I have a rather sedentary interspersed with insane activity lifestyle these days. But in between I still do my stretches and exercises, spasticity and Botox allowing. I'm not so fever pitched on recovery. It will happen when it happens in slow increments. I take the time to enjoy doing things with my grandchildren and friends. I bake and cook again (a major love) with adjustments for my limitations. I garden, granted it's in raised beds and not almost a half acre. I care for and train my animals (4 hens, 3 meat rabbits, Buddy the Angora, Belle the Guinea pig, 2 German Shepherds, and 2 cats who rule the roost.

I've gone back to my guiding principles of "Don't sweat the small stuff and it's all small stuff," and "Death is the absence of learning." In other words I'm getting to know the new adapted me. I've remembered that God is in control and while I'm waiting, I have a life to enjoy. It may not be the ideal life, but it's the only one I've got to live. I've found my balance again.

So when you think about all the things in your life, it's important to have balance in all things.

Nothing is impossible with determination.

Taboos

Is nothing sacred? Yep a lot of things are like God and the Ten Commandments. But in blogging there are a lot of taboo subjects. I realize this and choose to shed light on certain subjects like incontinence.

I rarely talk about sex because I've been voluntarily celibate for the past eight years. I prefer to have sex with a partner. My husband has been too ill to participate. It's not that I don't have permission to stray. It's not like I haven't had the opportunity, I have. My husband gave me permission to seek other companionship in that area, but it is a choice to remain faithful to my beloved. Being a relative healthy female, I do miss it. Some say it's like riding a bike so I'm not worried.

The thing about taboos is that people do talk about the issues among themselves or suffer in silence. I tend to lay it all out on the table and speak my mind. Sure there is plenty of information from medical sources on the web about subjects that are taboo, but very little "my story" type reading. Let's face it, you can read all the medical context you want but there is nothing like reading a first hand account of something similar that you are going through. You can honestly say that I'm not alone. 840K speaks very loudly (most since I've had my stroke).

Recently I heard from a reader that has had urinary incontinence issues since she was six years old and numerous surgeries to correct the issues. It warms my heart that I touched someone going through what I am and can relate to what I am saying. The reasons behind it are different, but the problem is the same. It proves to me there is an audience for my taboo topics. So many people suffer from the " Oops I can't say that online" syndrome. I don't suffer from it at all. Nothing is taboo with me but I try to keep my blog PG-13.

I believe that if you are experiencing something- you should talk about it. Not just the bad stuff or good stuff. I admittedly try to keep the poor-pitiful-me to a minimum and tell it like it is. Sometimes I rant and rage about injustices, but I do try to keep it light hearted.  Nobody really wants to read complaint after complaint or whining. Although I do that too occasionally. 

I've been bashed because I view my stroke as a learning experience and MY view of things.  But I honestly do. Since my stroke, I've developed more cyber friends and viewers online than I ever did when this was just a blog for writers or an author's blog. Yes this blog is still for writers because that is what I'm attempting to get back to. But with my second stroke the cognitive deficit is more marked.

What I regained months after my initial stroke has put me at -25 now. So I'm struggling here just to blog. Even writing this blog is hard to come up with words. Obvious with my continued absence. It now takes me three days to put together one blog between the (xxx) where I can't find the word or correcting all the red squiggly lines. Talk about a major setback for an author! But at least I am trying.

I appreciate all comments and emails but if you feel so strongly against the subject matter... stop reading. I usually preface my blogs in the first couple sentences. Nobody is twisting your arm to keep reading. I lead by example and follow like minded people. Even if the following drops right off a cliff. Well maybe not to that extreme. I imagine you do the same. My goal is not to alienate people but to say, "Hey, you're not alone."

I may never get back to being the writer I once was, but it's a goal I'm striving for. Thanks for sticking with me for the journey.

Nothing is impossible with determination.

Talking Trash

Oh, get your minds outta da gutter!


Barb Polan and I have been emailing back and forth about garbage and composting. For us it's difficult if not impossible to get the garbage from the house to the rolling bins, and out to the road for pick up. Okay, it can be done in a thousand and one baby steps along the way. A week's worth of garbage takes a week to get it to the road.

It's one of those things most of us really don't talk about. Another adaptability failure issue but we keep trying to adapt to succeed. It's just that success in this case isn't without some major issues. I wonder how Rebecca does it? Hey Rebecca! Chime in.

I guess I could put all my noncompostable garbage in those little plastic grocery bags and carry them to my dumpster one at a time. But that still leaves rolling the dumpster to the road. I don't know about your front yard, but mine is uneven with plenty of pine tree and oak roots to trip me up with a rolling slant. It isn't a smooth paved surface like the picture. I wish!

For anyone that has read my blog for over a year, you know I'm a survivalist, planning on living off-the-grid, and become self sufficient. I even wrote one book in a possible series of how tos.

Funny things happen to well-made plans. I had a stroke leaving me partially paralyzed on my dominant side. I'm having to relearn and adapt every thing I know how to do. I still compost, and as of last year I started gardening again. I'm an avid recycler too.

Bet you want to know how I get the compostables to the composters, don't you. I mean I'm one handed and walk with a cane so no free hand to push and pull with, right?

 

 

      Plus

 

One small bungee cord around the handle of the wagon and another around my waist. Okay, it's more like two bungee cords around my waist. I'll walk where I want to go pulling the wagon behind me.  I actually use cardboard to make the sides higher. But I keep in mind the weight I am trying to pull. It varies to a max of ten pounds plus the weight of the wagon.  Eventually I may Jerry-rig a harness for the German Shepherds to do the pulling, but they are still pups yet.

Originally my compost bins looked like this...
It doesn't take a rocket scientist to figure out this system would be almost impossible for me to turn properly let alone get the compost out without hurting myself post stroke.

So I graduated to this...I can just walk by it a couple times a day and give it a spin.  Yes I built it myself from plans on the internet. The guy in Home Depot was nice enough to cut all my lumber and the pipe works for me. I used screws, and nuts and bolts to put it together. What would have been a couple hour project in the old days, took me two weeks to build it. I put the handle on the side for when it gets too full and the barrels get heavy. 

No, these are not mine. Just some pics I pulled off off Google. But you get the idea. My set up is similar. I built two double compost barrel set ups in about two months. Between the chickens, Guinea pig and rabbits added to my home organic waste I could have probably gotten away with just one set up except for the amount of yard trash like leaves and cut grass.

I mentioned that I'm going to try square foot gardening this year. Since I set up my raised, really raised beds last year it made sense to me. I started to set seeds four weeks ago but the Arctic Blast hit and then hit us again giving us below freezing temperatures so I'm glad I didn't. 

I bought some cedar fence planks to enclose my bag garden beds from last year. I still plan

Yes that's old Mel himself.

on using my milk crates to raise them. I figure four 4x4 gardening plots would be a good start. One 4x4 set on the ground for corn and later for a bunny/chicken friendly grass/clover/hay mix for their grazing pleasure.

Nod to Mel, creator of the Square Foot Gardening method. My exception is that my frames will be 18" deep where his are only 6".  I believe in deep rooting my plants. Also I've been thinking of potatoes sweet and Yukons in 2x2 boxes that build up. It all depends on what I can get finished with in time. While "normal" people may accomplish the building time in a matter of hours, for me it takes days. But that's okay because I'm doing it.

So I plan again for the upcoming Spring and gardening. Life is all about changes and adjustments. It's all in how you view it. Stuff will always happen to change your circumstances, but living is what you do with them. You can sit back and gripe or adapt to live through it making the best outcome for your circumstances.

Nothing is impossible with determination.

Sunday Stoke Survival ~ This and That

I find that I'm spending quite a few hours on You Tube these days. One because it's quick snippets of information and two because it's entertaining.


With my current lifestyle of crisis management and turn on a dime decision making, I can't really do much else that is time consuming. You Tube is the answer.

No this isn't mine but close.

I've watched tons of videos about square foot gardening... something I'm going to try in the Spring to get a better handle on planting and harvesting my above ground garden. When energy and time spent are governing factors it made sense. I've also been researching how to build a bigger cage for Babs, my gorgeous bunnykins, she's getting a bit cramped in hers, and different ways to feed her other than store bought pellets. But that's not all...

I have to be honest here, I've been less than enthusiastic about my recovery of late feeling like somebody was kicking me when I was already out for the count. I ran across this particular video this week and it gave me a needed boost. While I've heard this song too many times on the radio, I never related what it could mean to me towards my recovery until I saw this video. A totally a eye opening revelation for me. It's my new favorite song.

Just the fact, that the video was pantomimed (actually singing although muted) by an otherwise 8-year old, nonverbal, autistic child got me thinking of aphasia affected stroke survivors and how it felt to me being nonverbal after my stroke but having a millions thoughts running through my head and not being able express them. My brain never stops thinking. The images may be of cancer kids but it could easily relate to us as survivors.  Listen to the words. I hope it will do the same for you that it did for me.

I've been researching stroke recovery too. Reading blogs, abstracts, and books are okay, but nothing beats the visual progress of stroke recovery and adaptive techniques survivors use. As I've said before I have an incontinence problem, as well as few other hundred things wrong with my stroke. I try to apply what see and think outside of the box in all things.

For me, urinary incontinence is not really embarrassing but a nuisance. I hate wearing pads.I didn't like it when I had to wear them during my monthly cycles. God bless menopause and a hysterectomy. See some good things come with age besides hard won wisdom. I use all the techniques I learned in physical therapy like the clock and fluid intake measures. I may wiggle in my seat to see if I've got to go like a woman with a crotch itch in church. That's one way men have an advantage, they just scratch or adjust themselves in public and pinch it off with the handle they've got, but for a woman...it just ain't lady like.

But also for me, there is the added bonus of a diuretic, Lasix, which keeps the fluids from pooling in my body and my defunct heart. For the first few hours after taking that miraculous little pill that keeps me out of congestive heart failure most times, it's a crap shoot for bladder control. It's a fine art of juggling most mornings and I'll explain why and how I adjust my clock to cope.

I take relatively high doses of Zanaflex with my Baclofen for muscle spasticity. The Zanaflex drops my blood pressure too low when I lay down. We're talking about low double digits. To combat this before bed I ingest something salty before I sleep, this causes my body to hold fluids thus keeping my blood pressure raised. Not a perfect solution but it works. My cardiologist thought it was ingenious and great problem solving. But as a result of ingesting the added salt and retaining fluids, and taking Lasix in the morning becomes a nightmare while it tries to get rid of this extra fluid. I adjust my time schedule for the first hour for twenty minutes after taking this med. On average that's how long it takes for my kidneys with Lasix to fill my bladder. The second hour, I'll add ten minutes making it every thirty minutes. I'll keep adding tihis way until I'm back to the original every two hours time frame.

If I have to somewhere while this counting up is underway, I'll urinate before I leave and when I get wherever I am going and keep the schedule. I'll admit that some days are worse than others, but the important thing is, I don't let it stop me. If I don't make it to the bathroom, that's why I wear a pad.

But with pads comes another problem. Diaper rash! They really aren't meant to be worn 24/7. Now this condition in an adult is painful and embarrassing! I'm sorry, but no one else is going to put diaper rash medicine between my legs, but me. Picture this... a woman with a brace on one leg and one useable arm, bending down to look between her legs and applying Balmx between her legs. Since my recent stroke, I  some renewed balance issues. Oft times my head is thumping the wall across from the toilet. Not hard mind you, a sort of a semi controlled lean forward, but just enough to stop my forward mometum. Luckily for me in this older home, the bathrooms are only 5x7. If it were any bigger, I'd more concerned. But for now, this works for me.

Nothing is impossible with determination.