Sunday, March 25, 2018

Sunday Stroke Survival: If All Else Fails, Punt

I know football season is over for another year, and punting a football is nigh on impossible living post stroke, but if the shoe fits you wear it. Hmm, wonder if I fit enough clinches in the first line? I also said the no-no word "impossible."<grin>

Jo, are you feeling okay? Actually, I'm fine and dandy so put your mind at rest. I just get frustrated at times and that's what this blog is about...working through frustration.

Everyone gets frustrated from time to time. But, as a stroke survivor, it seems to happen more frequently over the littlest stuff. Mainly, you are trying to  do something that should be second nature to you you've done it for so long before your stroke. Like walking or going to the bathroom, but all of that went out the window after your brain fart. Actually it's known as a brain infarct, but it's the many times where you go, "Oops, that didn't work right," and PFFT, it's gone." Thoughts evaporated just like the knowledge was never there.

Normally, before your stroke, you chocked it up to being busy or having too many irons in the fire. God forbid, you give age credit for these mishaps especially if you're under 50 to old fart's disease or CRAFT. You can blame it on old fart's disease, if your over 50. But now, after your stroke, it happens all the time and it gets frustrating to live with.

I often repeat what Thomas Edison says about creating the light bulb here.  You don't think he got frustrated a few times during this process? I'll bet he did. There are plenty of times along this living post stroke journey that I've looked at this and said, Edison was a braver man than me. But then, I realize he only tried 10,001 ways, I'm well above that number in attempts to walk unaided by my AFO or cane, and regaining use of my arm in almost six years of living post stroke. I still haven't found that one successful way of making them work like they are supposed to, but I haven't quit yet either.

Do you ever just get tired of adapting and just want to do? Oh, yeah! It takes a tremendous amount of time and effort to have to adapt everything to get anything done. I've always taken pride in my adaptability. I was able to turn on a dime to figure out a way to do something. With the starvation and blood killing off millions of brain cells, even my turns now take a minimum of three points to make a turn (physically and mentally). But, I thank God for this adaptability trait every single day. It allows me to still follow my dreams (more on this in a future post). In other words, I fall back and punt. Going with Plan B, is never anyone's first choice or it wouldn't be Plan B, would it? Even if it takes Plan C,D, or even F to get where you want to be, isn't it worth it? Whenever you strive for something more, there will be frustration. Think of it as a stretched Newton's Law of Relativity.

The thing that balances the frustration-doing point is desire. You have to want to do it. Edison wanted to create the light bulb. It didn't matter how many attempt it took him to him. He had the desire to do. So what are you that passionate about?

Coping strategies
  • Those passionate things would be the things to focus on first. Count each little success until you achieve the big one. It takes a lot of dominoes to make a chain reaction of them falling in sequence. 
  • Pick several passionate things to achieve. Work at each one. When one things gets too overwhelming or frustrating switch to another.
  •  Give yourself some wiggle room and plenty of pats on the back along the way. 
  • Look at things often retrospectively to see progress is being made. 
The comparison may surprise even you. The first time I used a knife after my stroke was awkward  and ineffective, but now I can cut anything. I just kept trying. Most times now, my fancy Swedish adaptive cutting board never gets used. Sure, the cuts aren't straight my cubes are even, but I get the job done with little effort. Retrospective vision is often overlooked. Don't do that! Allow yourself to give yourself pats on the back frequently because you've worked hard for them. Remember, if it were easy there would be no frustration.

Nothing is impossible.

Sunday, March 18, 2018

Sunday Stroke Survival: Survivor's Lament

If there's one lament about living post stroke that I hear the most it's "I just can't do nothing since my stroke!"

Be it a stroke or any life altering event. The first thing everyone faced with it, their first inclination is to say this and throw up their hands in frustration. True? True. It's probably one of those human nature things that I was graced to be standing behind the door when it was passed out.

Yes, I'm blessed to have been standing behind the door on a lot of human nature things that plague so many. By the same token, I was probably jumping up and down waving wildly when it came to impatience and stubbornness. "Pick me. Oh, please pick me. I gotta have those! Give me a double helping!" I can see God in heaven shaking His head and going she's going to a handful. He wasn't wrong. <grinning> But He also blessed me with creativity, logic, problem solving, and a healthy dose of common sense too to balance the equation. Is it any wonder I call myself the queen of Abby Normal? By sheer nature, I'm a contradiction in terms. But, I digress (once again *sigh*) from today's topic.

I always say, "Your attitude needs adjusting." Instead of "Get your head out of your backside," or " get off the self pity pot because someone else needs a turn." But that's basically what I mean. You've heard of the fifteen minutes of fame? I propose you apply the same approach to frustration and self pity. Okay, maybe thirty minutes. Your attitude is about the only thing you have control of after a stroke. Unless you have PBA like me from my stroke, but that's another thing entirely.

Basically what I'm saying is your focus it twisted. Unless you really want to feel worthless, down trodden, and alone. Does anyone really WANT to feel this way? I know. I know. We all know someone it seems to want to live like this, but I'm assuming you are not them because you are reading this. Take stock of what you can do.

Maybe you lost a lot with your stroke(s). I know I did. The laundry list of what I've lost, maybe forever, is huge. The inability to hold a job is the biggest for me because I loved my ministry and writing life. It takes a strong will to look at this list and  say I give up, but I don't. My first winter, after my stroke, without knitting or spinning wool, was devastating to me. I'd only spent over thirty years doing it. The first Spring without a productive 1/4 acre garden was just as bad. Did I wallow in self pity? Honestly, I did a little, but I was also researching how to do these things I loved with my new impairments. Just the act of researching helped me off the ledge. It was doing something rather than giving in to my plight. (Remember the stubborn trait) By the next Spring, I had knitted little Easter bunnies for each of my grandchildren. By the year after, it was knitting elegant shawls for my family. Now, almost 6 years later, I'm spinning and knitting one handed all winter long again.

I'm gardening too. Adaptive gardening techniques was also something I researched. I may not produce as much as I once did, but God's wisdom and grace has given me a smaller core family to provide for.

The list of pros and cons are still skewed because I'm living post stroke. But I truly believe in the "Nothing ventured. Nothing gained." saying. Just like before my strokes, the sky is the limit for what I can achieve or learn to do again. If I truly want to do something, I'll figure out a way to do it. Sometimes, the attempts are thumbs up, thumbs down, or thumbs neutral, but that doesn't stop me. I weigh the importance of my success against time, frustration, ability to repeat the process, and a long list of other things just like all the "norms" out there.

So when hit with the survivor's lament of "I can't do nothing" buck up. There's a lot of things you still can do, if try and adapt. Don't sell yourself  short. Take stock and figure out how you can.  You can do it. I have faith in you. All it takes is the first baby step of wanting to do it. I say baby step but for some folks it's a huge one. It's taken over a year of talking about knitting one handed for a lady in my group to say, "Teach me." That's okay. She's doing it.

Nothing is impossible.

Sunday, March 11, 2018

Sunday Stroke Survival: Arise and Walk Without Pain

This week seemed to be forever getting here. I am actually able to walk without pain! Let me revise that statement. I was able to walk short distances without pain. At least not the twisting knife in the foot pain I was in. I still have twinges when I climb stairs and am up on my feet too long. But, I'm giddily happy to be able to move again without pain.

But my foot is healing! At least that's what the pain reduction means to me. Or, it might be the new rocker sole on my shoe that takes the pressure off the ball of my foot. Or, it could be my new AFO. This new one takes in account the atrophy in the calf muscle, supports my ankle better, it has a non articulating ankle now since I can't dorsiflex anymore and plus has a build up on one side that adjusts my stance in a more natural way. Don't worry if the neurosurgery works, they can put the hinge back in.

Walking with the rocker sole took some getting used to. It felt awkward at first because I was walking on my heel rather than the ball of my foot striking the surface first. But instantly, there was relief in each step. I had to learn a new balance point than the way I was walking with my old shoes. Instead of tripping over invisible lint on the carpet with the toe of my shoe, it's now at the arch of my foot. The dreaded invisible lint will trip me up for several months to come before it will be put to rest. Don't you just hate that? But to me, it's a small price to pay for being mobile on two legs.

You gotta love doctors that will work with you rather ones that are captains of the ship. I wouldn't have any other kind. I hire or fire them, right? My primary care physician is no different. Other than my required twice a year wellness checks, I don't bother him unless I really need something. Sometimes, he's easier to access than my specialists (*ologists). This was the case with the order and documentation for my new AFO. I made the appointment and showed up three days later. First thing out of his mouth after "Hello" was "What do you need, Jo?" I like that.

After I explained what I needed and why, he examined my leg and AFO, my leg in the AFO while standing and walking. He's thorough and straight business jotting down high points on his notepad as he went. "This won't do. You have to have a new one. I'll be right back."

He was gone twenty minutes. I could hear him outside at the nurse's station dictating. He came back in with four sheets (single spaced!) of documentation that was required. We chatted about my kidneys and the up coming aneurysm surgery for a few more minutes and like I said before about my kidneys...nothing can be changed was the general conclusion. He'll just monitor the progress of the failure. When it gets bad enough, he'll refer me the another specialist.

That was it. All done except for dropping the paperwork off at Hanger Orthotics. I'm not going through that mess again like with my shoes last year. My doctor did add, if they need more information for them to call him. He'd write another chapter for them. He said the last ending with a throaty chuckle. Can you tell he's been around the block a few times in battling insurance companies and Medicare? That's what I love about older doctors, they know the ropes. I'm not opposed to holding their hand through the process, but it's refreshing to not have to.

Not bad scurrying about for a month, is it? Usually, the hurry up and waits catch up to me. I'm just thankful, it all fell into place before I broke some more bones in my foot. Spring is coming and our busy time in the garden and orchard. The rabbits need to get their close haircuts (shearing) before the weather becomes unbearable for them and we've already got one hen showing signs of broodiness. Now, I just have to get my stamina built back up to handle it all. Don't worry, I will.

After all...
Nothing is impossible.

Sunday, March 4, 2018

Sunday Stroke Survival: Still Dealing with Broken Bones

The mini saga on my broken foot continues. I've spent the last couple of weeks dealing with how to prevent this happening again. And maybe in the process, getting my foot to heal faster. Try as I might. I just can't be totally nonweight bearing on my poor foot. My lifestyle, home, and vehicle are not set up for it. I want to say at  this point, I'm so over this!

In the morning, I don my sock and AFO. At this point my foot looks normal. I hobble to the bathroom bearing weight on my heel build up. Little, sharp twinges of pain shoot through my foot as I rise from the commode telling me that my foot is still broken and it wasn't a bad dream. Because of not wearing a shoe with my AFO, my foot inverts with each step as much as the AFO will allow. So begins my day.

I hobble to my rollator sitting where I left it the night before...about ten steps from the bathroom door. I'll one legged roll it to my computer.I'll turn on my little electric heater. I'll read and answer my emails, scan the news, answer YouTube comments and play a couple of games on has two daily challenges in various games so I'm not constantly playing the same games which is nice.

I use the heater to take the morning chill off me. If I'm still chilly by the time I finish my computer work, I'll one legged scoot to the wood stove. Try as I might, I can't make a fire sitting down. There's paper to crumble, an intricate pattern of various sized kindling to lay, and wood to be lifted into the side of the wood stove. It's just barely 7 AM by this time. If I'm chilly, Mel will be freezing when she gets up. While the kindling and wood catches, I'll still be running my personal heater.

I'll sort through my morning and afternoon medications. My medications include Lasix, a potent diuretic.For the next three hours it's a race to see if I make it to the toilet in time. I was slow before living post stroke, but now it's ridiculous. It's a 50-50 shot whether I make it or not. I've gotten to where I keep an extra pair of panties, pants, and socks in the bathroom just in case. Yes, it's gotten that bad. The really bad part is none of the bathroom doors are wide enough for my rollator to fit through so I'm up walking again.

I'll fix Mel's pot of tea and breakfast while I'm up fixing mine. Thank God I make in advance breakfast and freeze it. I made a month's worth of pancakes, French toast, and waffles before I broke my foot. We also do a "big" breakfast for dinner about once a week: bacon, grits, eggs and toast. All I have to do each morning is heat it up and prepare the fruit. Like other people drink coffee in the morning, we've got to have our hot tea for the caffeine jolt. At night, it's a pot of decaffeinated Earl Grey.

After breakfast, I'm chomping at the bit to do something. I haven't seen the rabbits in a month! The rollator does not like the straw bedding in the rabbit barn. Same goes for the chickens in their coop. I've chatted with Little Red and Houdini (Hoo di hoo) as I come and go on one of my various trips out and about because these roosters are still free ranging to give the hens a break.

But I'm nonweight bearing so I spin plarn or wool, or knit for a while until I'm bored with it, and then, it's back to the computer again. And so goes my days.

That brings me to my latest to stop my foot from breaking again because of the spasticity and my AFO. I went to my brace maker. She cut the heel build up down by half. My contracted Achilles heel pulls a bit more but I can live with it. She also put a bar into the padding to keep the ball of my foot from striking so hard with each step and built up the side of my AFO so my inversion isn't so bad. She told me I need a new AFO. This one is only three years old and Medicare and my insurance only pays for a new one every five years. Caught between a rock and a hard place once again. She also suggested putting a rocker sole on the bottom of my shoe on my affected side. It would cost $40 and my insurance doesn't cover it. I'd have to leave my shoe with the cobbler for a week. It's a good thing that I bought a second pair of shoes. I've got one in the shop now. The second pair will go in when the first ones are done.

standard AFO
After my brace maker made the adjustments to my AFO, I was praying hard for a solution to my AFO problem. Although I could charge it to a credit card, I didn't want to. It's another bill added to a fixed income that I had to pay. Well, my prayer was answered. We'd fight the rule (again). But instead of my doctors starting a letters to get it qualified like last time, all I'd have to do is get my doctor to document the changes to my foot because of the spasticity. I could do that! I might mention here that my brace maker, the shoe place, and my PCP are all 30 miles away in a neighboring town. So I've been up and driving around too.

I've just have to hang on until May when I'm scheduled for my rhizotomy. If that alone doesn't markedly reduce my spasticity, I can do Botox again. It's now been nine months since my last injections. More  than enough time for the Botox to get totally out of my system. Maybe, it'll work better like when I first got them. At least that's what I'm praying for if I need Botox again. Maybe, I can again be making forward strides in stroke recovery again.

But this will be a busy year for me and doctors as if it hasn't been already.
At my cardiologist's office, I was greeted by the news that I now have three aortic aneurysms. One in my abdomen and two in the femoral arteries (in each leg). As if three bad valves and an electrical problem in my heart weren't bad enough. The arteries are bad enough that they have to be fixed or they'll rupture killing me. That's slated for sometime this early summer.

My yearly blood work showed some areas of concern mainly my kidneys. The tests showed moderate kidney damage/disease. So, I'm being watched for that. I know the culprits- A bad family history and the drugs I have to be on. I can't do anything about either, but pray. You know if it wasn't for my body working against me, I'd live on this Earth forever. But that's not going to keep me from trying. God willing.

Oh, and about my foot. When I go to bed at night, I pull off my AFO and sock. I'm greeted by my red, angry cartoon foot. You know the one where the swelling is so bad it looks like a balloon? Below the spandex support is rounded with swelling. My toes look like Vienna sausages wedged in those little tin cans. Well, I try to be nonweight bearing.

Nothing is impossible.