Sunday, July 15, 2018

Sunday Stroke Survival: Why Can't Jo Read?

You may have seen this is grade school. After a stroke, the ability to read and comprehend what you are reading might be impaired. It is for me. It can get very frustrating at times.

Reading used to be fun. I did it to relax. I did it to educate myself. I did it to be transported to another time or place. Although I dudn't do well in school grade wise in this subject. I loved to read anything I could get my hands on. This was encouraged by my parents and my librarian grandmother. I guess that, in part, is why I became an author. To not only read but create reading material.

Amazingly enough, I can read scholarly text with no impairment. I can enjoy researching and Dean's Stroke Musing because of this ability. It's funny how some abilities are affected by a stroke while others are left intact. In a way, it adds to my frustration. I can decode words to where they make sense to my stroke addled brain, but certain comprehension is lost. I have a memory and dyslexia type impairment when I read now. Reading is no longer fun, but HARD WORK. I often have to read through a passage three or four times to understand what is written. This is why I strictly read nonfiction now. When compounded with any sense of a time crunch, I can't read with any comprehension other than a gist of what was read or skimming where I understand a few key words.

For example, McDonald's recently changed there menu board. The Quarter Pounder with cheese is now a double Quarter Pounder with cheese. I was at the drive-thru,  ordered what I thought was a Quarter Pounder with cheese and another one for my roommate. What I got was a double Quarter Pounder and a regular one. I usually order one meal and two sandwiches. The drink is for me for the ride home. We split the fries between us and Dervish, the cat. Neither of us could finish eating the double Quarter Pounder. My brain skipped over the word "double." What a waste of money and food.

There's no joy or relaxing when reading now. I have to be alert to understand what I'm reading. There is no relaxing because I'm having to concentrate so hard to comprehend. It's hard to be transported to another place and time, when your feet are firmly planted in the here and now. So I read task oriented nonfiction rather than memoirs. Subjects like straw bale gardening and natural sourced dyes for example. I can read them over and over until the comprehension circumnavigates around the black, dead areas of my brain. But, even this is not without its frustration points. It takes time to read books an average of three times for this to happen. I have to really want to know this information to put forth this amount of effort. I have to admit that my library card is not used as much as it once was.

I fair a little bit better with audio books. My phonographic memory is showing signs of returning. At least the comprehension is better than reading words. I lost my kindle reader in my move up to north Georgia. It wasn't a Fire but it would read to me. I'll have to replace it. But even with the kindle, fiction was still a no go. Too many characters occurring too far apart. I just can't hold them in my memory even after six years of working on my recall abilities. Try as I might, I can only recall two out of three items. Characters even in audio are lost in the quagmire in my brain unless brought forward by rewinding to where I last heard or seen them.

Jo can read, but it's selective. My last stroke did a number on my reading comprehension, but I can read. I just choose not to read much and that's very, very sad. Still, I keep at it and try. That's all I can do until the brain learns to reroute my ability or I recover it.

Nothing is impossible.

Sunday, July 8, 2018

Sunday Stroke Survival: Life's Busy Signal

You know the busy signal sound by heart on the telephone. What is the sound your life makes when you're too busy? I have no idea, but it's making it.

I've been traveling a bit of late. I drove to North Carolina for my yearly trek to the Amish store for non GMO flour, wheat, sugar, and canning jars. I now have finally reached my goal of 1,000+ pint jars. No, not all of them are filled... yet.

I missed my my annual trip home to the Golden Isles. Mel was ill with a stomach bug and there was too much going on here for me to leave. I'll go next month. I'd go more often if I didn't have to get a motel room every trip. It kind of gets expensive. It's like a vacation...the only one I get these days and that's usually only 24-48 hours. The homestead takes up about 50%- 75% of my time. The rest is taken up by doctors, pharmacy and shopping runs, and therapists which means I'm driving away. It seems I'm always on the go when all I want to do is stay home.

My body tells me I'm doing too much, especially living post stroke. My fast, advancing age is a factor too. Physically, the aches and pains start. It takes longer to recover. When younger, aches and pain meant strength and gains, but when you are older, you are doing too much. You are still living and kicking. But what sound does your life make to tell you that you are too busy?

When you have a busy life, you are juggling many balls. I've simplified my life, but am still juggling a whole lot of balls. When I was younger it involved others like family and extended family. Now, it's just me and I'm dropping balls left and right. But there's no audible signal except my hand slapping my forehead. Doh!

I've been actively involved with my stroke support group. I haven't missed a meeting yet this year. I've also taken on refreshments for these meetings. But they are only six times a year so it's no big deal or hardship. I've got a fairly active online presence with my blogs and a couple of forums. Of course, there is my game playing group also. I only have to appear every couple of months. I greatly benefit from both of these in my cognitive relearning. We also have YouTube videos when we get all our equipment working at the same time again.

Now, I'm looking into a woman's group of homesteaders. They meet once a month at the local library. Do I really want to add another iron to the fire? That's the current dilemma. Will it help the business end of our homestead? Will it help us glean information? Will it help us become more self sufficient and sustainable? Will we connect to other like minded individuals? Someone else closer to us than our internet groups? Yes, to all. But it's just another iron in the fire. Another have to do that takes me away with more activities.

What sound does your life make when it's too busy? Shouldn't there be a busy signal? Before you start dropping the balls you are juggling? Before you take on one more project? Maybe the fact that I'm writing about it IS my busy signal. What's your busy signal that you are doing too much in your life?

Nothing is impossible.

Sunday, July 1, 2018

Sunday Stroke Survival: Waiting and Patience

I sat here this morning looking at a blank screen thinking of what I wanted to talk about and had nothing to say. I said a prayer for inspiration, as I usually do, and went out to pick bunny greens. The bunnies like them dew covered the best. Coupled with last night's rain, it would be good and wet for them.

I love watching the bunnies eat the long blades of grass. They'll grab one end and chew their way down. Similar to the way we eat long spaghetti noddles or ramen. They are just so cute! I also noticed the does have blown their coats. Coupled with the higher humidity last night and this morning, grooming them today will be a sticky mess.

I had a regular procession going to the picking area. Patches, my guardian cat, was right beside me as always. Herbie, my other guardian, was close by. He'd catch a scent of something and wander off only to return shortly. Little Red, the rooster, and his entourage of hens brought up the rear. They have come to expect the various caterpillars, snails, slugs, and worms whenever I'm in or near the garden. Houdini and Big Red, the other two roosters, and their two hens followed being careful not to get too close to Little Red's hens. He'd chase and fight them unmercifully if they did. But I'm side tracking into random thoughts.

In other words, it was a normal day. My arm wasn't spasming overly much for a change. At least it wasn't painful. My foot on the other hand, refused to straighten enough to even attempt putting on my new AFO. So what did I have to write about today as pertains to strokes, stroke recovery or living post stroke? Then I realized that this all was living post stroke. I'm going through the motions while in waiting mode. Does anyone really like waiting?

Post stroke you spend a lot of time going through the motion waiting. You do you exercises while waiting for recovery. You wait at the doctor's office. You wait while the bag boy at the grocery store puts your bags in the car. Now I'm waiting for the neurosurgeon to lessen my spasticity so I might be able to make positive strides towards recovery again and reduce my pain.

Me, being a proactive type of person, waiting is not something I do well. I joke and say that God allowed my strokes to happen to me to teach me patience. I've come a long way in the past six years, but still I strongly dislike having to wait on others. It's not like waiting for a handicapped person in a parking lot, get into their car and drive away so I can have their spot. Or, waiting while a Boy Scout help a little, old lady cross the road. Hey, I resemble both examples. (grinning) It's the months I'm going to have to wait before the neurosurgeon can even schedule any of the procedures they have to do. At their current pace, I may be able to get the Baclofen pump before the end of the year. Maybe. When you consider it's July 1st, that's a whole lot of waiting. The doctor wasn't in his office for the whole month of June! I guess when you want the best, you have to wait. Speaking of which, I still haven't heard from the Spine Center.

I guess part of it is my fault. I'm the one who waited five years to do this. Part of not doing this was fear of dying from the surgeries. I'll admit it. Fear is a liar! Decisions made after consideration is fine, but fear. Uh, uh. It's wrong and I knew this, but did it anyhow.

Because of my fear, the pain of the progressing spasticity had me up nights for hours on end. My days were filled with more pain that all I could do is grit my teeth and cry, or be zombified on drugs. I wasn't a happy camper. I spent five years already in this type of hell and finally wanted it fixed. So the idea of waiting another year is intolerable.

It has been so bad lately that I even thought about getting Botox again in the interim. But that would set me back another six months. I did call my Emory neurosurgery team, before my last regular neurology visit to check. So no wonder I'm in a catch-22 situation and feeling blue.

Nothing is impossible.
But the wait is killer!

Sunday, June 24, 2018

Sunday Stroke Survival:Too Pooped to Pop

This song about sums up my week
Standard YouTube license

As we do every year in the garden, I start the prep for the next spring. So I've really been too pooped
to pop. While the weather is nice and not raining, I've been taking advantage of it.

My schedule looks something like this...
The sun rises about 6:30 so there is plenty of light by 7. I've already fed the inside pets and myself. I put on my new new AFO and go pick the rabbits' daily ration of clover, plantain, grasses, dandelions, and poplar and maple leaves. Then, I'll talk to each one while I dole out the goodies.
1 row almost finished
 I'm off to the garden I'm flattening boxes and spreading them out over the unplanted sectioned of the garden aka walkways. I'm being careful to over lap the boxes by at least 3" all the way around. This gets tricky because all the boxes are different sizes and thicknesses. Soda can boxes (24 can and 12 pack variety) are the easiest because flattened they are fairly big. The only problem with the soda boxes is that they are slick when wet. I've fallen more than a few times. They are also thin cardboard so it takes more of them to make the 1"-2" layer that worms love unlike Amazon or USPS boxes.  The ultimate easy box was the one the water heater came in. It covered a big space. But I can't afford this kind of purchase that often. Then, I'll grab the water hose and wet it all down. I do this twice. The next layer is straw or hay, spread it 6"-10" thick. I'll usually take a thirty minute break every hour because with the new new AFO,  I can't stand and move more than that. At the very most it's two hours until the correction pain gets the better of me.

I'm ready for a serious break. I get Mel up if she isn't already. She's a night owl. I prepare a pot of hot tea. Even though we aren't in England, it's tea time. I'll fix her breakfast and for me a snack cheese and crackers, or peanut butter crackers to go with my tea. I'll also prep dinner if it goes into the crockpot. Mel and I will chat a bit about what is going on today. It's time to change back to my old AFO.

 I'm back at it laying cardboard and straw. Mel is using the tractor to clean all the deep bedding in the rabbit barn. In between manure runs to the in garden compost pile by the peach trees, she manhandles a bale of straw/hay into the garden area and put it where it needs to go so it's easier for me to break down.  Another hour's worth of work done.
The temperature is at the day's high (90s). I call a stop to my garden work during the hottest part of the day. Mel keeps working because of her later starting time. I've already sweated so much that it'll take two full 16 oz glasses of ice tea before I'm able to urinate. Not that I haven't been drinking during my breaks. It's just that hot and my back is screaming at me for all that stooping. I get myself cleaned up. A quick sponge bath to cool off and bring my smell down a bit. Now, I'll do the shopping and/or doctor or PT appointments. The air conditioning sure feels good in these places. We don't have it at home. Just box or ceiling fans. Or I'll just sit by a fan and do some computer work until it cools off a bit outside. I may grill dinner, or if I'm out and about grab something like a pizza or burger for dinner, or serve dinner I've prepared about 3ish PM. I might even catch a nap. I switch back to the new new AFO.

After dinner, it's time to head back to the garden. I'll continue laying cardboard and straw/hay until dusk. I'll check on the rabbits one final time. I'll refill their hay bins with Timothy grass to nibble on during the night. Mel handles the water and empties the pellets into the bin to keep the rats out of it . It's just too much trouble for me to do. I figure division of animal care  and all that. It makes sense, right? I switch back to the old AFO.

By 7PM, we both fall into our respective chairs in the screened back porch. Our back porch is set up in summer mode now complete with TV and DVD player. We'll turn on Netflix and watch a couple of shows or a movie. I'll have my knitting or spinning. Mel will be rolling cigarettes or crocheting. We are both exhausted after a full, busy day, but it ain't over yet. Laundry has to be done so it can hang on the line in the morning. Clothing needs to be folded and put away. Bedding has to be changed. The inside animals need to be fed and loved on. The floors need to be swept, mopped, and vacuumed. Blogs need to be written or edited for me. For Mel, it's editing videos or programming software.

By 10 o'clock, I've taken my last meds for the day. I've showered. A full fledged shower with scrubbing every inch of my body. I'll play a game or two of Canasta or a word game while I wait for my meds to take effect. Then, I go to bed. I'll sleep for four to eight hours depending on whether the spasticity pain, or my bladder, or leg cramps wakes me up.

And then, I start my day again. I will say that the second and each later day, I'm slower doing and have to take more breaks because my body is screaming at me more. My age and living post stroke isn't helping me either. At least it's done now. I'll just have to water, weed, and harvest the garden when needed. Oh then, there's the preserving the harvest, but that's another story.

That which doesn't kill us makes us stronger, yeah right! It came close. I'm just thankful it wasn't my old 1/4 acre garden!

Nothing is impossible.

Monday, June 18, 2018

AFO Update

As y'all well know, I've been having issues with my new and old AFO. It's been a maddening adventure trying to get the new one to fit without causing pain when I wear it longer than three hours.

I just have too active of a lifestyle even living post stroke. I suppose it would be different if I was the type of person that didn't strive to be active and push for recovery of what I lost. But, that's just not me. If nothing else, I'm true and totally honest with and about myself.

The main problem is two fold. The new AFO straightens my foot and ankle the way it should be, aka normal, and my old AFO doesn't do this, but causes stress fractures. It's a no win situation. I strongly dislike those types of situations. It feels like losing, but really it's not because I walk better with the new AFO.

I had another appointment with my orthotic specialist. This is going to be an ongoing thing until the Baclofen pump can be installed and adjusted. Every month, I'll be making my way into the "big" city for consults and adjustments until then. After much discussion, we decided to keep doing minor adjustments to the AFO over time because it is actually doing what it is suppose to do. This new AFO will look like it's been through a war just like my other ones by the time they are finished. It's a good thing they are not charging me for these appointments, but I still have to pay for the gas for the 60+- mile round trip.

I'm still waiting on a date for the Baclofen trial. So I'm stuck trading out AFOs when I can't tolerate one or the other to get the things done that need to be done. I'm still doing more sitting than I need to be doing. I guess we all do what we have to do even when it involves stopping in the middle of doing something to change out braces.

It looked similar to this shutterstock pic
I'm glad I bought two pairs of shoes last year too. I had a major blow out of the sole of my affected side's shoe. The entire tip to the mid sole non slip cover came loose. It flapped with every step. Talk about a fall waiting to happen. While I was in Gainesville visiting my orthotic specialist, I dropped off the shoe at the shoe repair shop. They were the ones that did all the adjustments to my shoes. Because it was one of these adjustments that blew out, there was no charge. Of the six years I've had to have specialty shoes, I've been extremely blessed not to have an issue like this before. I'm also thankful that the sale of my lower Georgia property allowed me to buy an extra pair of shoes so I wasn't having to try and walk with my shoe like this.

The news about the new AFO is not all bad. The new AFO is easier to put on and the hard plastic shell is narrower than my old one. This is a major plus in the summer. It slides in and out of my shoe easier instead of having to use a shoe horn like the old one which is also an advantage. But most of all, it's holding my foot in the proper alignment. My back is ever so grateful.

I have developed arthritis in the first MP joint of my affected pinky toe. The numerous x-rays I had on this foot during the fractures healing confirmed this. The pain and swelling isn't  helping matters in pain threshold department. In case you didn't know, the pinky toe is in constant use keeping your balance with each step. Having sustained several crushing injuries and fractures to the foot in the past, and now the AFO, I'm not surprised. Even with the strap across my foot on the new AFO, the toes move and are pulled out of alignment with the spasticity. The new AFO straightens my foot for a more evenly distributed weight across my foot so this joint is now getting an even greater workout. This relatively new diagnosis is a kick in the pants.

It's s-o-o much fun getting older.