Sunday, January 20, 2019

Sunday Stroke Survival: Changing Responsibilities

Today's post is about changing responsibilities after a stroke. If you are like me, you had help to delegate your "chores" to children, in laws/outlaws, or just general family just after my first strokes.  I know many out there in reader land who do not have this luxury.

I was luckier and unlucky in that respect. I was able to gradually able to rapidly slide back into my new old life. I was only in hospital and a recovery unit for 30 days. It wasn't enough time.

  • Offers of help/assistance only apply on the other person's schedule not yours for the most part. I sometimes had  to call 3 or 4 people just to make one doctor or therapy appointment. But at least I had that option. Others without this resource have to depend on medical transport.
  • This is only temporary. At best 1-6 months worth. After that, you become a burden to avoid. If I sound cynical, it's because I know human nature.
  • After those willingness to help folks are gone or sporadic at best, you are on your own. 
  • During this time you relinquish all control and choice to others. 
  •  You'll know when you assert yourself as a back seat driver that you want your choices heard. This is taken as being ungratefully by the people who are trying to help you. They will distance themselves from you as a result.
Now for some other things...
  • Shopping- when you send others to do your shopping for you, they spend more and pick up the wrong items. To go with them has a few obstacles. For me, this included finding someone to care for my terminally ill husband while I was gone. Then, there was the issue of my chronic fatigue after my strokes. An hour at physical therapy or shopping had me napping for an hour afterwards.
  •  Cooking- You might be lucky and have a daughter who brought over a plate of food each day, or have a neighbor bring over a container of chicken & dumplings.This is a challenge on a daily basis even for a professionally.trained chef such as myself. Your brain is sluggish. Meal planning is almost an impossible feat. Stouffers and frozen meals to the rescue. Nuke and it. But soon the repeated meals wear you down. How many times can you eat lasagna or Welsh rabbit in a week? You want to cook, or at least I did, but I could barely stand.
  • Cleaning- This can be very challenging without a dishwasher. I found that using a smaller sink. Sweeping is doable by holding the broomstick with your chin. The broomstick is also a great cane. Dustpans with a handle is an essential. Dusting, you can leans against the desk or furniture you are dusting. Laundry- I opted for a laundry service. For $0.75 a lb, they washed, dried and folded or hung your clothes. They even put it your car for you.
That pretty much covered the basics besides the self care. That's another open can of worms. I make
it sound so easy and it's not. But with each task you try and fail, or try and accomplish proves to yourself that you can do. Some parts of your life have taken a detour and gone walk about (God only knows when they will return). But even a baby step forward leads to confidence to take another.

 I challenge myself each and every day. Some mornings, it's a challenge to get out of bed, but I do it. That is an accomplishment to feel good about. To keep that victorious feeling going, I accept, even look for it, another challenge. Today for me is making a pharmacy run and go to Walmart for some items. I hate shopping at Walmart! Too big, too many people and a necessary trip. This is a major accomplishment. But that's not all. Today, I'm stepping  out of my comfort zone and raw packing beef stew into canning jars. I've never done this before. I've only hot packed this. Wish me luck.

Nothing is impossible.

Sunday, January 13, 2019

Sunday Stroke Survival: Life as a Nonsmoker...Again!

Well, I'm officially a nonsmoker again. This is as of December 30th. As I said a couple of blogs ago if I want to make life changes, I just do it. Notice I waited until now to tell y'all.

Such is the case this time. After arguing with my health insurance provider, I decided to quit. Their new policy would increase my premium $75 each month starting January 1. I used the cancer free argument and how they should be thanking me, but they still want to charge me any how. Now let them pay the consequences of their actions. And unfortunately, so will I. So I begrudgingly quit. The additional smoking penalty put the policy way out of budget.

"So look at the cost savings," said a friend said. All I can see were the dollar signs that fighting a cancer cost me and multiplied by four. Not to mention the wear and tear on my body, and prescriptions for life for the removal of organs. I'm talking about multiple thousands of dollars, they haven't had to pay out over the past thirteen years and what they've had to pay in monthly/yearly hormone replacement and diagnostic test to see if the cancer has returned over the past forty years! Only recently, Medicare offsets the copays for these which is a huge relief to my wallet. Of course, it could be worse. I could have let the cancers kill me. Nah, I'm too much a fighter to do that.

So, I put down the cigarettes and roll the dice hoping I don't crap out. I bought a bag of sugar-free suckers to combat my mouth-lip fixation. I don't want to switch smoking for diabetes as a risk factor. That wouldn't be smart, would it?

Nothing is impossible.

Sunday, January 6, 2019

Sunday Stroke Survival: Oh, the Aches and Pains

As some of you may have realized, I have a pretty high pain tolerance. Why is it as we age, your aches and pains grow and multiply? Why is getting out of bed during winter is twice as hard as doing the same thing in summer? Why does it twice as long to combat these aches and pains during winter? Yes, winter is once again upon us.

You'd figure once the winter solstice (Dec 21st)  has passed and the days are getting longer that you wouldn't feel so bad as much. But I don't. The weather outside is frightful. Cold, wet, rainy, sleety with snow mixed in,and windy. This is one time living down in the hollow is not advantageous. The winter will freeze any exposed body parts even here in north Georgia, and I thought it was bad in Michigan. I will say we have more moderate temperatures because we rarely experience below zero temps. Thank God!!!

Still, the cold has a way of creeping into my bones. Metal rods and screws in my back don't help the situation.  I took my temperature upon rising read 98.6 degrees, normal right? I threw off my comforter, and roll to rise up out of bed. My back screams at me while it does its snap, crackle, and pop routine.I'd slept too long in one position again. I donned my t-shirt, heavy flannel shirt, and a sweater. The overnight low was 36 degrees. Inside by my thermometer was 52 degrees with the fire in the wood stove burned out. I can feel the coolish air on the tip of my nose and my fingers. It doesn't take long for me fingers to freeze up and refuse to move. With the cold, my spasticity and arthritis kicks in hard. Neither one likes the cold.  I chug my morning pills down with our spring water knowing it'll be 20 minutes until it kicks in. Meanwhile, I'm hunched over.

I start up the wood stove, it takes a while to get the fire bricks to warm up enough to radiate heat. I take my temperature again...98 degrees. By now, after 4 splits of wood are blazing, I put the kettle on the stove. A quick trip to the wood pile on the porch, let's me know that the temperature outside is about 40-ish, but the wind blowing across the porch makes it seem much colder. I grab 6 splits of wood (about 30 lbs) into my tote and manhandle it up the two little steps into the house. The tote full of wood sits almost perfectly on my spastic, affected arm.

I make it through the door and pivot to close the door when a handle slips off my arm. CRASH! BANG! BOOM! All the logs sill out onto the floor. They scatter so bad that I cannot close the door. I take the other hadle off my arm and lay the totes flat on the floor. I hurriedly pick up the pieces of wood and then loop it back on my affected arm. Then comes the real challenge, a dead lift from the floor of 30 lbs with a back weight limit of 20 lbs. The medicine is still trying to kick in. I manage to do a hunched over, crab walk to the wood stove. Stooped over like I was, there was little difficulty loading two more pieces of wood into the fire box. Only a mild string of curses words emitted from my mouth as the hot, firebox door hit my affected arm as it closed.

The good news was I was finally able to straighten my back. I walked almost normally to the kitchen. I placed my arm under the cold water tap. I swear it gave out a sizzling sound as the water hit the now black, bubbling skin  where the door made contact. These are my winter battle scars. I have umpteen dozens of them by winter's end. Getting my forearm to the faucet is a sight better left to the imagination. Let's just say that a change of top garments is necessary after this feat. Because of the spasticity, pain accentuated spasticity, my arm drew up into my chest. But it was in the perfect position to spread the aloe vera leaf onto the burn.

The rocker soles on the bottom of my shoe almost causes a hyperextension of my knee when I walk on my affected side. It's an artificial patella which doesn't like it at all. So now my knee aches when I walk. The lateral ligaments also voice their complaints. "Okay. Okay." I sit in front of the computer.

Not five minutes go by and Nnyus, the dog, wakes up and talks to me about wanting to be fed. Now, Nnyus doesn't bark at me. A bark is yelling and she's too polite for that. She does this growling woo-wooo-woo sound repeatedly until, for my sanity, I get up and do what she wants. "Alright! I'm getting it." I'd reached my five minute tolerance of this noise. I bend down to grab their bowls. My back now that it's straightened all the kinks out of it, now protests bending.  I straighten up and carry the bowls to the end of the counter by the pantry. My back thanks me a bit too soon. I'm bending again to take the lids off the dog food bin, I pivot to fill the bowls, and straighten my back to carry the bowls to the pot of leftovers on the stove top. Their daily goodies are always our leftovers from the night before, in this case, it's beef stew. I run hot water from the top and pour it over the mixture. Nnyus likes hers soupy. Herbie not so much. I grab the bowls and bend to set them in place. "Come eat."

My back muscles yell at me, "Quit that!" To emphasize their point, they spasm hard. Now, I'm truly bent over unable to stand up straight. I hobble over to the wood stove. I'm in the perfect position to poke the fire and load some more wood into the firebox. That done, I hobble the five feet back to my chair and sit at my computer again. My back sighs with relief and relaxes. Now, I breathe a sigh of relief. The medicines are finally working full force, but with the full force working, I'm drowsy. I'm sitting not ten foot from the wood stove so I'm warm and comfortable.

Now's the time to get busy. There's angora does to blow out, chickens to feed, mulch to spread, and our daily meal to cook, but all I want to do is doze by the fire. My aches and pains have finally abated. My spasticity has other ideas. I'm jerked from my doze by a painful spasm. My hand is up under my chin with this one. I careful reposition my arm into a more comfortable 7 of 9 pain level. I place a small pillow under my elbow for support as I wait for the spasm to reduce in severity. A tear squeezes its way out of my tightly closed eye. It eventually stops so fifteen long minutes later. I put on my sling to support my arm and get busy with my day.

Nothing is impossible.

Sunday, December 30, 2018

Sunday Stroke Survival: New Year's Resolution and Living Post Stroke

Let me preface this with a statement. I do not make New Years resolutions for the following reasons. Resolutions or life goals changes can be made at any time. If you want to change something- then do it. Most New Years resolution are chucked to the side by March to languish there until next year. Anytime is a good time for a fresh start or a do over. Why wait until January 1st?

It took me five minutes to remember the word "resolution." Geez, my poor stroke addled, aphasia suffering brain. I knew what I wanted to say, but couldn't remember the word.
It might work if you had your stroke on New Years Day. But I don't know anyone who had a stroke on New Year Day, do you? Then again, I don't know everyone, do you? Imagine with a stroke happening every forty seconds in the US, there has to be several, but I don't know them yet. 86,400 seconds in a day = that's 2,160 strokes happening a day. Divided by 325+ million people, according to the 2018 census, all this math is making my brain hurt with the probability of my meeting a person who had a stroke on New Year's Day.

So what goals do I have for the new year? Nothing, Zero, Nada, Zilch. Resolutions set me up or failure. Nobody likes to be seen or feel like a failure. I have enough of those on a regular basis without setting myself up for it. I've had general goals that were set in 2012 with my first ischemic stroke, but they are opened ended. Doesn't every stroke survivor? The magic word is 100% RECOVERY. With time, it's recovering marginal abilities like being able to walk without a cane or walker, or pinching two fingers together, or just doing a recovered action better.

I wish I could do this
Unlike most stroke survivors, I have had six mini strokes since my first. Each one has set me back in varying degrees to where I'm re-recovering after each one. Talk about frustrating! I no sooner start living my life post stroke, I get set back a peg or two and have to relearn something over and over again. I resolve and do over in stride. I keep plugging away and onward. Each stroke is a fresh start. It doesn't matter if it's the first of the year or not.

Now, I walk with a Parkinsonian type movement. I stand up, then pause. I have to engage my brain before I take my first step. Then, I pause again before the next one. After that I'm fine walking one foot in front of another. Now, walking backwards is another story. I pause with each step. Each step I'm having to reengage my brain. I had recover my walking ability after my first and subsequent strokes until my last one this year. My brain just doesn't function the "normal" way any more. It might get better with time, or with more mini strokes, it may get worse.It is what it is. I'm still mobile on my legs which is my blessing such as it is.

Last year, my goal was a rhizotomy. It started in January with a phone call from Emory. If you've followed along with this, you know how that turned out. This year my resolution is simple...survive. Whatever comes down the pipe, I plan on surviving to try again. After all, that which doesn't kill us...there's that Nietzsche quote again. I have another chance of a restart or do over. In psychology studies show, adversity weakens you without tender, nurturing care to support you and strengthen you. Makes sense, doesn't it? For me, the tender, nurturing care comes from heaven so I'm never without it so my faith in the face of adversity actually strengthens me to cope and have the ability to start again. So that's another New Years resolution I have that isn't one...continue my walk in faith.

So you see, my New Year's resolutions are just continuations of survival with faith. Nothing more or less.

Sometime in 2019, I will stop smoking once again in the coming year. I will exercise more. I will lose some more weight in the coming year. It is what it is. They aren't goals they are a matter of facts. Now that my AFO is not causing any new foot fractures and it fits properly of course I will be moving more and because I'm moving more (exercising). I'll lose weight (by exercising more). DOH! In stopping smoking, for me, it's a matter of not lighting up. Thanks to healing prayer, there are no addiction withdrawals other than a mouth sensation thing and aversion to the smell which is remedied by sugar-free suckers and washing everything. I found this out after my first stroke in 2012. In that respect, I'm luckier than most. I'll heal faster from my foot and ankle reconstruction and my eventual rhizotomy by not smoking. But these aren't resolutions that I start in 2019, but will happen in 2019. There is a difference.

Nothing is impossible.

Sunday, December 23, 2018

Merry Christmas Y'all!

As another Christmas is whisking it way towards us, it gives me pause to remember all the blessings I've been blessed by this year. My van is loaded with Christmas goodies ready for my trek homeward.While I'm not looking forward to the six-hour drive tomorrow, it will be good to see everyone.

It seems of late my blog has been filled with the negative aspects of living post stroke. The blog has been a platform for me to vent rather than bless others, which is not the purpose of the blog. Sigh What can I say. Life just has been continually handing me lemons where my living post stroke life is concerned. I'll try to do better in 2019.

On the flip side while my post stroke health concerns have weighed me down, my life as a whole has been extremely blessed. Pennies from heaven continually trickle in so I can meet all our needs. I'm actually in debt ($2000) but my income continues to cover all the bills. It even allows for little extras too while I pay down my debt. With COLA due the first of the year, it meets my increases in Medicare and my BCBS supplement. This is a true blessing. I know for many, this increase of funds doesn't stretch that far. I'll even have about $13 a month of an increase.Can I hear a "Thank you, Jesus!"

With having to purchase all our firewood this winter instead of getting it for free, the budget has taken a big hit this winter. The cord and a half we put up of our own was gone in two months with the bitter cold fronts lashing us. We've even had snow already. Usually if we get any, it doesn't fall until late January or February. It's going to be a long, cold winter. The price of firewood jumped this year from $85 to $120 for a cord of seasoned firewood.We've got to figure out a way to get the fallen trees up from the ravine or next winter will break me money wise. Still burning wood in the wood stove is hands down cheaper than other fuel type furnaces. Plus I don't have to worry whether my propane runs out or the electrical grid goes down for heat.

We've gotten quite a bit done on the homestead this year. Our garden and orchard produced our needs in green beans, corn, and tomatoes. I was able to make grape jelly and 5 gallons of wine. Mel and her cat, Whirling Dervish, have already polished off a gallon. So I'll have to double the amount of wine I make next year so I have some to share next year.We should get a bigger harvest next year too. I'll be rooting the pruned canes for more Muscadine and Catawba grapes this winter. So we are blessed with a full food storage building and seeds to plant next year. If I can do that much with my AFO problems and foot fractures last year, just think of what I can do next year. I might even be able to start a few CSA shares (Community Supported Agriculture) with the abundance and make the garden and orchard pay their own way like our animals do.

As far as our animals go, we've had to buy very little chicken this year. We've culled the roosters from the straight run of chickens I bought last spring. The hens are producing enough eggs to keep themselves in feed. The rabbits also will be earning extra later this winter by producing offspring for sale. So far, we've used or sold all the fiber we've gotten from our little money makers. They have kept themselves in feed and hay since the first quarter of owning them. So in that respect, we are truly blessed.

Since there is no surgery planned in the near future except for maybe a Baclofen pump, I can go ahead and join the Y for water exercises. See for everything there is a silver lining. I owe it to me and by God, I deserve it. Or, I can search out another orthopedic surgeon who will rebuild my foot and ankle. I'd put all of this on hold for the rhizotomy that isn't happening now. I'll wait until the new year to decide which decision to go ahead with. Either way, I'll be ready for all the spring time activity here on the homestead. Either I'll build up my strength and stamina, and/or get out of this AFO permanently. I've got a few short weeks to decide. Either way is forward progress. The past year of waiting around for naught is over. Proactive Jo is back.

Nothing is impossible.