Sunday Stroke Survival: Weather, Tornados, and The Three Little Pigs

I'll bet the weird title made you click on it thinking, What in the world is going on now? If you think about what these things have in common, you'd think of strong winds. You'd be partially right. Or, I could be spouting a lot of hot air in a windy, winding, wordy sort of way. Keep reading.

In the past several weeks, Mother Nature has been in PMS mode. April showers begins May flowers, but it's only February. Surrounding counties as well as ours have been under daily flash flood warnings.  I'm not worried yet. Our creek is 600 ft below us. Now if that threatens to flood us, we better have an ark!

This has been the strangest winter on record. One it's in almost 70 degrees with torrential rains, and the next day brought eight inches of snow! Followed by the next day with 60 degree temps and rain with flash flood warnings. We haven't had two days of sunshine in a row in two months. On the days the sun does appear, we've been hit with wind gusts in excess of 50 miles an hour!

I'll bet you  are wondering what this weather report has to do with post stroke recovery or living post stroke. I dunno, I'm just writing. Let's see where it takes us. There has to be intersecting lines somewhere, right? Not really I know where I'm going. Doh! You know me better.

Having a stroke is a big blow to everyone including you. Your family is affected just as much as you in different ways except one. All concerned and you. want you to recover as much as possible fast. If they are as close knitted group like mine, they rejoice with your successes, be cheer leading from the side lines, and knock you over with kindness for a time. My terminally ill husband was a prime example of the latter. He literally shortened his already short life expectancy in the first six months trying to help me or do for me. Not because I asked him to, just the opposite, but that was the way he was. It worried him to no end when he could no longer be my loving husband and a total patient sliding into home.

The second thing that comes to mind is the chaos factor and effect. From the beginning, your whole world has been through a tornado and what's worse, you are trying to decipher what happened with a brain that is damaged and in shock. What worked doesn't and you can't understand why. You are praying it's just a nightmare you'll awaken from, but you don't.

A roll of the dice and you could be one of the lucky ones and recover all in that golden 30 days...unlikely, but it does happen. Another roll of the dice and you reach the 100% recovery goal in six months. I say, it's a roll of the dice because that's what it is. Ir isn't how hard you work at recovery or most of us would have 100% recovery. I know I would have. I spent every waking moment visualizing and exercising my affected side while strengthening my functioning side. I willed my arm, elbow, wrist, and fingers to move. I had minimal success within the first six months. Bur in the end, the high tone that I fought since day 1 after my first stroke and escalated into rigid spasticity won out. Well, that's not true, I'm still fighting it by any means possible.

I've faced many such tornadoes of chaos before and after my first stroke. I wish I could say sifting through the rubble of my old life doesn't get easier with repetition. At times, I feel like the three little pigs against the wolf. Except there's no third pig with a house of brick. Or, I never reach that level of a completed brick house before it blows my house down mid construction.

I stay in the reconstruction zone and it can drive me nuts! Having to live post stroke is an everlasting do over for me, or it seems to be. It is for me, when another stroke or health issues sets me back to almost square one like my urinary control issues I'm going through now. But I'm fighting my way back to my new old normalcy... to get back to using regular menstrual pads just in case. It's a viscous cycle of do overs, I'm going through or blows.

But still, I'm still fighting the big blows that come down the pike because...

 I'm too mean to die. Too stubborn to give up. And most important, I'm in God's Hands!

Nothing is impossible.

Sunday Stroke Survival ~ Botox and Therapy

Well on the 14th I had my Botox injections. When the medical receptionist called with an appointment reminder, I told her I'd be there with bells on.

When something hurts you when you are already hurting, why get so excited about more pain? Mainly because I know that relief is coming. The idea of needles stuck in muscles and moved around; in and out, a little to the left or right until the most irritating static comes through a speaker on the EMG machine...is no one's idea of a pleasant way to spend a couple of hours. It can take a couple of minutes to find the right spot and that's for one shot.

The whole time I'm practicing my Lamaze deep breathing to keep all my muscles from contracting. After all, it's in my best interest to make sure the neurologist hits the right muscles which are spastic. This go around we are up to 400 units. At over $100 an injection, I really need her to get it right. Otherwise I might as well flush cash down the drain.  It's $100 for just the medicine part. The EMG, supplies, and doctor's fees isn't included in that. One round of Botox injections cost $6,500 billed to my insurance company four times a year.

Once again. I'm thanking God for the cap on my maximum out of pocket expense on my medical insurance. It was one of the first things I double checked on our policy after Obamacare took effect. The only change I saw was our monthly rates increased. Surprise, surprise.

Anyhow, getting back to the injections...
Fifteen injections and a hour and half later, I thanked my doctor and told her it hurts so good. I laughed when I said it. She knew what I meant.

Although I read through the precautions and side effects each and every time before I sign the consent form for the injections, this time was different. Although it was on the sheets I signed, I had never to date experienced them.

I developed severe charlie horses in my leg at the injection site. The only position I could move my leg into to stop it was to lay flat on my back, elevating the leg and bending the leg to a 30° angle. I'd have to hold my leg in that position for 20 minutes, any shorter the cramp would come back. Now my sleep schedule is shot full of holes by giving my husband morphine every two hour, but this was ridiculous. Luckily this only lasted twenty-four hours.

The other thing was a low grade fever. Just high enough to make me feel achy and yucky.  Oh yeah, and hot. As if summer time temps and humidity in southeastern Georgia wasn't hot enough. Compound this with the fact, I'm allergic to aspirin, Tylenol, and Motrin you've got a thoroughly bad situation.

Before my stroke and my husband's health started its serious decline, I could soak in a cool tub to bring down a fever. Yes, I do have a walk-in tub I could use, but really don't have the time to soak long enough to bring down anything. I resorted to big chucks of ice and a basin of water to make cool compresses. When the basin was filled with water and before refilling it again, I would go into the tub and pour it over my head. No sense in wasting ice cold water. Eventually, my fever broke completely the next day. But before it did, I was miserable. No energy but having to do everything for myself and my husband. Achy to the point where it hurt to move any part of my body including my eyes. Of course having Fibromyalgia doesn't help either even though it is mostly controlled by medication..

But that only lasted through the weekend. Now the Botox is kicking in and I started therapy again. I'm as excited as a kid with a new puppy. By getting therapy just as the Botox is getting into my system good leaves us months to work with my arm before the spasticity kicks in unlike last go around with a couple of weeks before the spasticity kicks in.

I needed some hope and optimism in my life. I've had some pretty hard knocks as of late. It feels great to have something to look forward to instead of dread. Everybody needs a bright spot occasionally to restore and instill good in their life and this is mine. Not that I expect to regain the use of my arm in a few short weeks, I know that may still take years, but it is the possibility of  regaining the use that I can strive for. When I related to my neurologist about my hand opening in therapy she was genuinely surprised and excited for me. After all...

Nothing is impossible with determination.

Sunday Stroke Survival~Tired to the Bone

Chronic fatigue is my added devil from my stroke. Paralysis being #1. All in all if I wasn't so tired all the time, I could actually do more towards recovery and a lot of other things. Compounding my stroke is a bum ticker which also causes fatigue.

I'll admit my fatigue is not as bad as when I had my first stroke almost two years ago, but it is still my Achilles heel in productivity. Just after my stroke, it was a hour long nap, at least, after two hours awake. After month post stroke it was an hour nap after three hours awake. I gradually progressed to five hours awake with one hour nap. All of that is with 6-8 hours of sleep at night.

My progress with wakefulness and energy was set back in December with another small stroke, but not bad. I was at four hours awake and one one hour nap. Thirty minute or twenty minute power naps are like nothing and don't help. Not like they used to. I used to be able to take a power nap, awake refreshed and conquer another eight hours of work. Now I'm back again up to six hours awake and a two hour nap. That almost two naps a day!

Of course, all the muscle relaxers don't help the situation. 80 mgs of Baclofen, 16 mgs of Zanaflex, and Valium, all work against me too. But I've been on those high doses since I got home from the rehab hospital so my body compensated for it. Also with the amount of high tone, spasticity, and Clonus I have eats those drugs up. The February Botox injections have worn off to where my arm is back in its 90 or greater degrees cocked up position, tight against my chest, and almost no possible extension of the fingers. The wrist doesn't move no matter how much Botox it gets. When I mentioned the amount of muscle relaxers I was on to my husband's social worker yesterday, her mouth dropped. She uttered, "And you are still awake!"  Obiviously. I was talking to her.

Having this fatigue and caring for my husband is a mad juggling act with medicines given every 4-6 hours. I push myself to stay awake often falling asleep at my desk and awakening with a start. I imagine the stress and these drug passes are weighing heavily on my fatigue issues too.

I have always looked at sleep as something I needed to do, but could do without. For decades I proved myself right by fully functioning on four hours of sleep a night. I always said, "There's time enough to sleep when I'm dead" and kept on pushing. Now, that's a long forgotten memory. Just when I need it most. A challenge at best.

I found eating kept me awake, but that only compounded my obesity problem. Knitting works, but the last couple of days I've found myself nodding off over my loom. Jerking awake causes nothing but more problems between the high tone, spasticity, and the Clonus. My leg will be bouncing up and down, and my arm will pull up tight against my chest almost to my chin. It takes almost thirty minutes to relax the arm enough to bring it down to a fairly comfortable 90 degrees.

Why is it that when you use one of your paralyzed limbs the other paralyzed limb's tone is affected too? If I walk, my arm tightens and draws up. When I stretch out my arm, my foot will arch more to the inside. It's like the puppeteer's strings are wrapped around each other. Doh! Confused neurons firing into the dead portion of the brain sends crossed messages. I answered my own question, but it doesn't make it any easier to accomplish anything. All of this extra action saps my energy too.

So how do I accomplish anything?

As I've said before, it's all about balancing. I've added tightrope walker to my master juggler status. Because with chronic fatigue, you walk a thin rope of energy and ability to do. There is a long list of things which HAVE to be done.

The Steps

• Know yourself
• Make a list
•  Break the HAVE TO DOS into manageable segments

Once again, I'm using me as an example.

I know me and have had enough practice with my available energy level to accomplish tasks. I also know how much energy I spend doing certain tasks. I use my heart as a monitor for energy expenditures. My heart will override its medicine to control the rate when I push too hard or expend to much energy. I can actually hear my heartbeat in my ears when it gets above 100. It's not hard to count your heartbeat when it's drumming in your ears. I have to sit and rest to get it below 100 because my cardiologist says it puts too much strain on my bad heart. I can see her frowning when I'm at 104 let alone at 150. I do what I have to do first upon waking up my brain so it will function properly.

My Honey-Do List for the week
*Fix breakfast
*Medicine passes
*A diaper change for him
* Feed, water, and love on the animals (rabbits, chickens, cats, Guinea pig, and and dogs) 2x day
*Empty the urinals (I have two so I don't have to do this but four times a day)
*Empty the bedside commode and wash it
Grocery shopping
Computer time-emails, blog, forums, games, etc.
Pick up medicines from the drugstore
Buy two skeins of yarn from WalMart
*Fix lunch or fly to get it
*Fix dinner or fly to get it
*Spend additional time with hubby
Work on Christmas presents (shawls, caps, and scarves)
Buy hubby some more pajama pants
*Check and refill humidifier on hubby's oxygen condenser
*Rehab exercise 2X a day
*Hospice schedule (CNA, nurses, social workers, clergy, volunteers, sitters)
Kill the swarm of fruit flies without spraying
Wash dishes
Vacuum the carpets
Clean the litter boxes for cats and rabbits 
The garden

All the things  marked with an asterisk have to be done daily and sometimes multiple times a day. All others are optional to a point. I look at my list and put numbers to prioritize the tasks and see what can be put off until the next day or next week. It's my front seat/backseat method in infinite detail.

The medicines he can take by himself are in a pillbox for the week. That way I know what I will run out of first for reordering and can tell his nurse when she comes. I never wait until the last minute to do this because she may have to get a prescription signed by the doctor first especially his morphine. Some, like his morphine, have to be measured and given to him.The same goes for my medicines.

Grocery shopping is a HUGE energy expenditure for me with bottled water and soda pop.  This is a one time event that leaves me wiped out for the day. Even with me riding around in the store on one of those scooters, if I can find one. I shop at Winn Dixie because it's an older, smaller store and it's close to the house. I asked the manager if I can use one of the bag boys to help me shop for the big items like Coke Zero (hubby's fav) or water. They load it into a big buggy and roll it up yo the front of the store until I'm ready to checkout. This helps a bunch! But still I'm juggling pennies to buy what I need as I go through the store.

My drugstore is CVS. It is conveniently located across the highway from Winn Dixie and it has a drive-in window. I can either drop off my medicine bottles before hitting the grocery store or call in my refills with a pick up time after I finish my shopping. This is a time  and energy saver. I don't have to park my car, go into the store, and walk to the back of the store to pick up my prescriptions. It's a one-two-thank you ma'am.

I've got this routine down to a science now. I can do this and be home before the CNA leaves. The real chore besides shopping for groceries is getting them inside and put away. Yes, I could lug each and every carton and bag inside, but I don't. I stick my prescriptions into my purse and open the door. I had Triston (#2 grandson) bring my little red wagon from the garden and park it by the front door. The first thing to come in after my purse and cane is the cold stuff for the refrigerator and freezer, and putting them away. After bringing this in my heart is drumming like a rock band, so I need to sit down for a while.

I still manhandle the 24- packs of water because otherwise it would be lift them into the wagon, tugging that weight up the ramp, and then unloading it into the house. That's too much. It's easier to pick one up and put it down several times up the ramp and into the stack of water bottles. Or like I've done the last two weeks in a row, wait until my daughter comes to bring them in. The heat or cold won't hurt them if they stay in the car.

Going to Wally World stresses me out, but it's a necessary evil at times. To give you an idea of how frequently I visit that store...6 times in almost 2 years. It's not a bad store, but it's HUGE! Most times no scooter is available which means walking. With the threat of pressure sores on my foot, that amount of walking is detrimental to my health. In variably, what I need is in the back of the store. So this particular store is a last resort for me. It's too hard to move around. Logistically, it is far easier to go to Family Dollar or Dollar General for most of what I need. AND forget about Target for the very same reason. They take up too much of my energy reserves. Nine times out of ten after a grocery shopping day or WalMart, I have to come home and take an extra nap just to make it to bedtime.

Yes, fatigue is s-o-o-o much fun. The idea of not getting up and putting clothes on at all is a pipe dream. I know many are juggling work and family, but I'm thankful I do not work or have any other family other than my hubby to take care of. I don't think I could do it. Yes, nothing is impossible with determination, BUT there are limits if I'm to do what needs to be done. Some have time limits and others do not. Some times are self imposed and others are not. I tend to have some wriggle room with the self-imposed times just in case I have to change his linens in between the CNA doing it. It's happening more and more. My poor daughter has had to wash all the blankets twice in a month because of them. I have three for his bed.

Having a fatigue problem is a royal pain when life gets in the way. But with knowing my limits, juggling tasks, and break it down into manageable segments, it is doable. Some days are worse than others but it is a constant element in my life. Challenges make life more interesting, with all the hats I wear, and things I face daily that I'll be never bored.

Nothing is impossible with determination.

Sunday Stroke Survival ~ Sailing Through Life with Disabilities

This summary is not available. Please click here to view the post.

Frustrating Attempts to Craft But Victory in the End...Maybe

Okay so yesterday, I announced that I was making Dew Drop Shawls for the female members of my family.

I priced the loom used in the video. Yowser! It is expensive! $46 without the shipping added. For me these days, anything over $20 is expensive. Especially for a want. Granted this isn't a one time use thing. It allows me to stretch the possibilities of things I can still do. It's crafty and creative. But I still have to buy the yarn I have in mind to make the blasted shawls too. I couldn't justify the cost in my mind.

So I reverted to my favorite pass times once again- Google search and youtube for a cheaper alternative. I could build my own for less than $20. Now I really don't have any confidence in my skills with power tools like saws yet, but my local Home Depot could take care of that. A hammer and nails I think I can do, but keep in mind my work bench is inaccessible in my garage with half my tools.

My BIGGEST mistake...thinking!

So I come home with my prize, 3/4 inch square dowels cut to 24 inches and 3 inches for two side pieces, enough wire brads to do the job, and some Gorilla glue to make sure the nails didn't move. All I spent was $17. I thought, Cool! And, they wanted $46 for this. Sanding it all smooth as a baby's behind was a piece of cake. I braced the pieces between my belly and the edge of my desk and used a very fine sponge sanding block. I made the block with stuff I had on hand by taping 220 grit sand paper around a kitchen sponge.

According to the instructions, I had to measure down the middle (roughly) of each dowel and draw a line. Simple, right? WRONG!

 Hurdle #1- Have you ever tried to draw a straight line with a ruler on a raised surface one handed? The ruler moves, the block moves, and the line is waving like a ship being tossed in a hurricane.
The Fix- Used the other dowel to support the ruler and put thumb tacks to hold it in place. Now I make no bones about doing anything with my nondominant left hand. I suck at using a pencil with it. The line is fairly straight after three attempts. I only have to do this three more times on the other pieces to the loom.

Next, according to the instructions, is marking the nail holes along the length. I knew the spacing on the All-in-One loom so this was a no brainer. I took my double pointed compass out and marked along the line in purple ink. Why purple ink? Because I can. There was no way I was going to take a ruler and figure out what marks went there 3/8th of an inch along a 24 inch length. I knew my brain couldn't hack it. I left enough space along the long pieces to account for the joining cross pieces. Huzzah! The brain remembered!

Hurdle #2- Holding the dowel in place while I traveled the compass down the length.
The Fix- Brace it against my keyboard and put my paralyzed arm against it.

Now all I needed was a hammer to nail the brads in place deciding that I would first do this before gluing and screwing the frame together. I also decided not to pre-drill the nail holes. The nails only had to go in 3/4 of an inch. There I go thinking again.

I've got FOUR hammers of varying weights, sizes, and uses. But could I find just one? NOOO! Ah! There they are! On my work bench as they should be. There is only five feet of boxes and sacks in between them and me. No way I'm going to be able to move them out of the way by myself to get one from my work bench on my own. And, climbing Mt. Everest is not my list of fun things or accomplishments for this year or ever. The attempt is not worth the risks. Thank you, daughters #2 & #4 and a smattering of grandchildren for leaving me this mess. Off to my local thrift store to buy another hammer. Success! I can hammer nails now.

The results.

Being a smidgen off in the long line makes a difference. By not pre-drilling the holes, the nails went in crooked. The only good thing about this is...I learned my lesson and tried it. It's back to the drawing board for me. At least, I tried to nail the nails on the short piece first.

I'm going to have my beloved draw some straight lines for me when he wakes up. Luckily this is a square dowel so there are four sides to draw on. I'll remark my nail hole, and pre-drill the nail holes.

I'll make a handy dandy depth gauge like the instruction show out of 1/4 inch washers taped together. That way I'm sure to get the nail 3/4" across the board evenly plus it's a bigger nailing surface to hit. I've got at least forty of them in an easy accessible spot thank to my scavenging husband. He's one of the few men I know that will thoroughly take apart something broken and scavenge all the nuts, screws, and anything else that might be useful one day. It drove me batty, but now I'm thankful.

Now where is my drill or my Dremel tool so I can pre-drill my nail holes? Oh, that's right! They are on my work bench. ARGH! I'll be back with a picture of the finished project, but it may be a while.

Nothing is impossible with determination.

Sunday Stroke Survival~ Social Media

Why as a stroke survivor or caregiver for a stroke survivor should you Tweet, pin, Facebook, or blog? For a few very good reasons

• You don't stuff your feelings
• You find out you are not alone
• Get and share information
• At least I don't have it as bad as the other guy

These are just a couple reasons. Nobody knows the challenges I go through on a daily basis as someone who's walked in my shoes. They might not have had as devastating, or easy of a time with their stroke but they know or can relate to some of them.

It is so easy to think, as a survivor or caregiver, and stuff all the negative feelings. Be warned, doing this only hurts you and those around you. By saying you are having a bad day acknowledges those feelings to anyone that will listen. I've had my share over the past year and a half. If I had stuffed those feelings, I'd be in sorry shape about now both as a stroke survivor and a caregiver. I'd be ready for the closest mental hospital and consider it a fun vacation! 
 
If I post "having a bad day" on facebook, or twitter, myspace, or any of the forums, or blogs that I write, I guarantee there will be at least ten emails or telephone calls from "friends" or family  that want to know what's wrong. That doesn't include comments. I put friends in parentheses because these are cyber friends. People I have never met in person who are closer to me than some my local face-to-face friends. You all know who you are.

Sometimes you don't want to feel Abby Normal. Like you are the only one who is going through this. It is so easy to believe you are. A good portion of my day is spent on the internet for that very reason. Isolation is killer when you are disabled or the primary caregiver for someone chronically ill. As a stroke survivor we are chronically ill. Although in various stages of recovery, we are still not the same as we used to be. You are going to vent about injustices, balk at the way your life has changed, and share progress you've made. Misery loves company doesn't it? Conversely, have you ever had good news that you wanted the whole world to know? This is it! It's not called the world wide web for nothing.

Have you ever wondered if someone has had an experience that you had? If you truly are Abby Normal? Yep, I have. The social media and websites in general are a wealth of information. If you've just had a stroke, that's probably where this is most helpful, and want to know how long am I going to be this way. You are tired of hearing the  "very stroke is different" cop out. There are survivors out there who have been where you are.  When is probably the most asked question and to be honest there is no correct answer. I wish there was. You are part of an elite club that gets 3 million new members a year worldwide...the strokees or stroke survivors. Congratulations! You could be part of the third who have a stroke and don't survive. Believe me when I say I don't always think that I'm so lucky to have survived. You are not alone in feeling that way.

As you find others like you, who are a survivors too, you share experiences conquests, joys, disappointments, and information about being a survivor. Others want to read about these experiences to feel they are not alone. As you age in your survival, you provide a feedback source for someone newer to the club than you are even if they never comment.

I reach caregivers and survivors alike because I wear both hats. There not a week that goes by when a certain someone, Barb, who emails me just to check up on me. She along with Dean, John, Amy, and a long list of fellow strokees that become in some ways closer than family. They know you are struggling and care enough to send words of encouragement or to realize that life is dishing out too much for me to handle again.

I blog about what is going on because I can. I answer all my own emails still. I can't afford a personal assistant on my writer's income. Well, I could but I'd lose that personal touch I value so much. As an author I write and every experience is grist for the writing mill. Not everyone would be comfortable with airing their personal life, but I look at it as a way to measure how far I've come.  I'm a public figure anyhow. To me this is just journaling my journey. Instead of writing in diaries as I did so many years ago, I do it here. No, not everything appears here because I do also have a private side too.

By reading and socializing with others, your life is put into perspective. Things can always be worse no matter how bad they are. I know, I know. This is not ideal, but somehow knowing that someone somewhere has it worse than you makes you feel better. As humans we are competitive creatures at best. You can look at someone else and "there but by the Grace of God go I." There will always be someone worse off than you. You could be me or I could be Sarah (no not you). She's a single mom has no arms and one leg. She also has three children under the age of ten. To me, that would so much worse off than me.

Yeah, it's a reality check or wake up call. My stroke wasn't as bad as Diane's husband. I can walk after a fashion. I haven't had body part amputated because of contractures (knocking my wooden head). I am able to speak more than a few words. I don't have to use a catheter and diapers full time. Yes, by comparison, I am very lucky. As a caregiver we face equal challenges with our respective husbands. The major difference is Diane is not paralyze on one side like I am. Reading my blog she gains a new perspective- as I do reading hers about her husband's stroke and his struggle to be normal. So in turn I'm luckier and worse off than them.

I noticed last month one of the ezines (internet magazines) I republish to jumped on the twitter and facebook bandwagon...finally. Though I do not tweet or hang out on twitter anymore, it is a fast way to get snippets out about stroke info available. My screen scrolls too fast for me to read and respond. Something is definitely wrong with the connection between my eyes and brain since my stroke...it makes me dizzy and out of control, whereas before my stroke I almost lived there.  

My new love is youtube and pinterest. I can scroll at my speed. Although I've had a youtube channel for some time now, I never fully appreciated it's value until recently. Pinterest is also a new/old thing for me. Whether it's to find something that might help make life easier on me or to share something that helps and may help others. I post items that interest me or helps me write my books as reference. Pinterest is actually a pretty neat spot for visual interests. I learned to knit again using youtube. I can also grow my own food for my rabbits and chickens for less than a quarter of the monthly bill thanks to youtube. Reading too much really tires my brain these days so the 5-10 minute videos fit the bill.

So what does social media offer for the stroke survivor? You become mentally grounded. You are not alone. With networking, you get and share information. And finally, you really don't have it as bad as the other guy. Won't you join us? Blog, tweet, or facebook your stroke today. You and someone else may appreciate that you did. Too shy to put your footprint in the cyber world? Follow multiple blogs. You may not agree with everything being said nor even comment, but be enlightened. No one can do it for you.

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.

Post Stroke Encouragement

As y'all know, I spend way too much time on youtube and I'm an urban homesteader (survivalist).  I ran across an interesting video this morning on OurHalfAcreHomestead. Mrs. Volfie had a turkey poult that was prematurely hatched that appeared to have a brain injury.

It definitely caught my interest being brain injured myself ... a stroke survivor. It just goes to prove that you can learn something from the new "boob tube," the internet. It never fails to amaze me where my day's encouragement comes from to keep me going on.

As a stroke survivor, if we all had therapists so in tuned with our recovery as this woman, we'd all be whole again.


Take a gander. If you are not rooting for this tom by the end...there's something wrong with you.

 

Granted we are not turkeys. It takes us longer to relearn. But with enough encouragement, this sky's the limit. 

Nothing is impossible with determination.

Fore Thought and Action After a Stroke

I'm realizing that my previous post is boggling most of you readers minds. How am I am to do what I do after a stroke. It takes a lot of fore thought and trial and error.

I have always been able to set priorities before acting. This stems from years of experience as a life flight nurse. I know you've all heard of the ABCs...airway, breathing, circulation in any first aid course. I tend to function like that after decades of following ABC steps. Critical first and everything else next. I call in my front seat/back seat method of prioritizing. Paying the electric bill before the power is cut off. Giving medicines in a timely fashion to prevent crises later on. Mopping up spills when they happen prevents falls later on. I personally dislike when others make their emergencies my emergencies. This takes a lot of fore thought to stop emergencies becoming emergencies.

A little fore thought before any action goes a long way in preventing a severe energy waste of do overs.

As in the case of my husband being on the floor my first concern was air because he didn't have his oxygen nasal cannula on. When he kept saying "no oxygen" it became a process of elimination before ever considering broken bones from the fall or trying to move him. It turns out that because the rails were up on the bed, the only way he could get out of the bed is over the foot rail. So rather than actually falling out of bed, he had done a slow slide intent on going over to the condenser. I didn't find this out until much, much later.

The way I balance him now is to brace my paralyzed side against him. With my spasticity in full force right now that side of my body is not going anywhere. This leaves my functioning side free to support, grab, reach, and lift or do whatever is necessary. I'll place what I need within easy grasp for my left hand before I try to do anything. It's not the perfect way to do it, or the safest, but it works for me. I get 'er done.

I fell a couple of days ago in my kitchen (the same day as my husband "fell"). I was turning around to leave the kitchen and I got my feet tangled up. BOOM! The Diet Coke I had in my hand went flying pouring its contents all over me, the floor, and down the hall. I did a quick body assessment ie, moved various moveable parts to check for damage. The main things that hurt were my functioning elbow and knee. This would be a major problem in me getting up but I'd have to grin and bear it.

My husband saw the can go flying and asked if I was okay. I yelled back yes. The last thing I needed after falling was him trying to get up and try to rescue me. We'd both be on the floor and no help coming. After I assessed the damage I sat there and looked around thinking of things to help me rise without hurting myself further. I scooted over to the stove. I could straighten out my braced foot and use the edge of the stove to pull my fat behind up. My knee and elbow screamed at me and I sat back down on the floor to rethink my options. I eventually figured it out and began mopping up the mess I'd made. The results were some really bad bruising and me guarding the injured parts for a few days.

I returned to my hubby with a forced smile on my face and got him up into his electric wheelchair. I grabbed a bag of frozen peas and propped on my knee and elbow for the next twenty minutes sitting at my computer. My hubby didn't know I'd fallen until after I got up to put the peas back in the freezer. That was because I did my loud old lady groan. Ya gotta love getting older. You make such interesting sounds when you move.

Since my stroke there are a lot of things I cannot do. I accept it for right now as a changeable fact in the future. Until that time, I'll do what I can with what I've got. Although I always tell others ...you never know what you are capable of unless there is something you have to do. Given the same set of circumstances, not that anyone would want my circumstances, they would surprise themselves at what they could accomplish.

Nothing is impossible with determination.