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.

Sunday, December 16, 2018

Sunday Stroke Survival- Neurosurgeon Update

Well, I had my appointment with the neurosurgeon this week, but the news wasn't what I expected. The surgery for the cervical rhizotomy has been tabled for a year. His schedule is already booked for 2019! Talk about frustration and being irritated.

Why have me jump through the hoops for months when surgery was not a possibility for a year? I'll just have to redo the same tests all over again before surgery can be scheduled again in a year.

To make it worse my PBA kicked in. Instead of losing my temper and yelling, I bawled like a blubbering idiot. I have done everything they've asked, waited fairly patiently for appointments, and I was cast aside like a worn doll or at least that's how it feels.

This specialist did say he had a new partner. Great! A small glimmer of hope. He would discuss my case with him. It might be possible to have a Baclofen pump installed until the rhizotomy can be performed. Huh?! Isn't this why I jumped through hoops months ago and was deemed unqualified for? I was told not necessarily. I had been deemed unqualified for the dorsal/lower back Baclofen pump to reduce the spasticity in my leg. This was different it packs a greater punch to the brain and arm. But it will be up to his partner. Of course, being now after 5PM, they will have to call me back with an appointment. GRRR! They called while I was typing this. I have an appointment on February 4th.

Am I crazy to want to be out of pain? Am I crazy to want to stop my post stroke spasticity? Would I be certifiably insane to continue chasing this rhizotomy? I'm beginning to think I am. I've spent dozens of hours driving back and forth the Emory. Added wear and tear on my van, and burned 5 tanks of gasoline. Spent money I really didn't have for parking fees and meals on the road. And, it's been over twelve months with NOTHING to show for it. I'm in the worst, constant pain than I have been in years with no end in sight. I'm continuing to lose function. I'm no where closer to the end than when I first started this journey eighteen months ago.

The fact is, I'm frustrated and tired. I really don't know which is worse at this point whether never hearing back from Shepherd's Center or the run around I've gotten from Emory. I'm seriously thinking of getting Botox again. Even 45 days of being pain free out of 90 is better than the never ending routine I'm going through now. I might even be able to reduce my Baclofen/Dantrolene/Valium dose. Lord knows, I'm at best a zombie now on these maximum doses and still in pain 7 out of 10 on good days. I'm learning to live and function at this level through squinting eyes and grimaces.

I can actually function quite well with my arm bent at a 90 degree angle if it wasn't for the pain. I can hook two gallons on milk (about 18 lbs) or 6 splits of wood in a tote with the arm. My arm doesn't budge. With 8 splits of wood (about 35 lbs), the arm may lower a couple of inches. I'll have to use my functioning arm to help support it so the tote handles don't slide off. That's not too shoddy. My back is another story with the stooped lifting with too many repetitions. I just have to watch for skin break down at the hand, wrist, and elbow. The tote was a new purchase this year. It is better than hauling in firewood one or two pieces at a time. Why I didn't think of this two winters ago, I'll never know. But from one moment to the next, my arm will go from 90 degrees to in my chest in a hard spasm. Any movement when my arm is in hard spasm shoots the pain level to 10. I can't scream. I can only shed tears.

If I don't hear something positive from Emory, I'm calling my regular neurologist to put me back on the schedule for Botox. I'm tired of jumping through hoops and getting no relief. This isn't living... it's hell and I've been patient.

In the meantime, I've made two different fudges. One chocolate made with semi sweet, bittersweet,and milk chocolate (think death by chocolate) and a peanut butter one with crunchy peanut butter. Sometimes you feel like a nut and sometimes you don't. I've also got my gumdrop cakes in the oven for eating and giving. Later, it will be cookies. I made cinnamon gingerbread men ornaments for the Christmas tree. They smell yummy but they're not to eat. They taste yucky. Pop over to the Cockeyed Homestead blog to find out how I made these. Nothing perks me up after a totally bad day (months) like preparing something yummy in the kitchen.

Nothing is impossible.

Sunday, December 9, 2018

Sunday Stroke Survival: The Wait is Almost Over

After almost eighteen months of chasing the possibility of stopping the progression and pain of my post stroke spasticity, the wait is almost over. YIPEE, YEAH,and doing the Snoopy dance of happiness. Two days and counting until my final consult with the neurosurgeon before scheduling my cervical selective rhizotomy.

This surgery is relatively new (less than a decade old) while the SDR (selective dorsal rhizotomy) is several decades old. There are about a handful of surgeons in the US that can/have perform this surgery. I feel very fortunate that I live so close to Atlanta now to be able to go to all these hoops I've had to jump through.

The Modified Ashworth Spasticity Scale rates my spasticity as a Grade 4 out of 4. "Affected part(s) rigid in flexion or extension." This is true 24/7. The only time I can move my arm, wrist, and fingers is with half a hour of rather intensive physical therapy. The therapist strips the muscles, dry needles, and uses manual manipulation to get my arm to even budge even two or three degrees. It will take another half an hour of work to extend my arm an additional seventy-five degrees. The therapists actually tell me they are sore the day after working on me. I can believe it. They are practically standing on their heads trying to get my arm to seventy-eight degrees of extension and that's just the arm. Straightening the wrist and/or hand to extension will take another thirty minutes of work to get them just short of mid line (straight).

Of all the studies I've read through, the results have been remarkable. Grade 4s have dropped 2-3 grades! At a Grade two, "More marked increase in muscle through most of the range of motion, but affected part(s) easily move" would be a blessing! I could work hard to backtrack to Grade 1. To drop another grade to Grade 1  with surgery, would be an immense blessing. I would still fight to reach Grade 0- no spasticity and recover what I lost with my strokes again. My Snoopy dance of happiness, would turn into a dance of praise to my Father in heaven.

So, I'm counting the days and soon the hours...

Nothing is impossible.

Saturday, December 8, 2018

Preparing for Winter Storms

The weather folks are calling for the first snow fall for this winter this weekend. It usually doesn't happen until January! But it doesn't hurt to be prepared. Down in our little hollow we'll see some but not near as much as some parts of the country.

As homesteaders, we are pretty well prepared for as eventuality, but other folks are not so lucky. I also know that many of y'all live north of the Mason-Dixon line too so winter storms are nothing to y'all. Just as hurricane preparedness is to us on the east and west coasts. Or, tornadoes in the Plains. Still bad weather puts a crimp in anybody's style.

As a stroke survivor, or any impaired person, preparedness is doubly important.We have speech, medical needs, and mobility issues that can't be ignored. I know with all the snow and more importantly the ice will cause me additional problems. Most of this blog is common sense for all storm preparedness.

My van cannot make it up the 1/4 mile, 100' rise. It will slide all the way down. But we've got Mel's 4-wheel drive, 8-cylinder truck to get out if necessary. It's a monster, but it runs. Being short, 5' squat, it's difficult to get into, but it just takes more effort to get in and out of. Worse comes to worst I can drive it to Atlanta on Tuesday. The interstates should be pretty cleared by then.

As with any bad weather, being prepared ahead of time is crucial. We are luckier than most because we live and work on our small homestead. We have everything we need within easy reach. The rabbits and chickens are within easy reach, maybe a total of 20' from the back door to tend to the animals, gather eggs, etc. No trudging 1/2 an acre in snow and ice to get to them. The food storage building is bulging within 5' of the back door. I planned it all this way on purpose given my disabilities. I learned from my first winter here.I work hard all summer and fall to make sure my pantry is full by November.

As far as electrical needs go, we have a Harbor Freight solar panel kit. It's attached to two deep cell batteries. With the inverter, we can pull power off of that in a pinch. It's enough to recharge batteries of computers and cell phones. In winter there is an advantage over summer storms, you can take your frozen or refrigerator food stuff and put it in the snow to keep it that way. We'll bury the big ice chests in the snow for use as a refrigerator.

But heat is another story. You gotta stay warm. Extra blankets are put on the beds. Which causes me the problem of getting out of bed in the morning even with a ball under the covers just from sheer weight. But I'll do it to stay warm.

We heat with wood, so a full cord of wood is placed on the front porch and a another cord is within 20' of the front porch. As a back up we have electric heaters, but that will do us no good without power. My black trashcans filled with kindling are moved to the front and back porches for easier access. Yeah, it looks like a flat mess, but inside we're cozy by the heat of the fire.

It's also time to break out the heavy coats, sweaters, and other such cold weather wear. Dressing in layers is the key I learned from living up north. You can always shed layers if you get too hot, but it sure feels good for the warmth.

With the days getting shorter, light becomes an issue. Various tasks need light to be accomplished. You can't read, you can't cook, or do anything after sunset without a source of light. For this we have several options candles, oil lamps, battery operated flashlight and lamps, and even shake lights. Remember the solar panel kit and the batteries? In a pinch we can recharge batteries off of them. We can go weeks without ever leaving our homestead and be perfectly fine. A month would be stretching it, but we could if we had to.

Cooking food, could be a problem for you. Cans of Sterno come to mind if you're are not like us with a wood stove with a cook top. Or, "Are You s Survivalist or a Prepper?" you can use old cans to build a rocket stove like I talk about in my book. There are quite a few helpful tidbits in there. (shameless self promotion plug).  But think about how you are going to heat your food or prepare your meals. I've got a propane stove, the wood stove, a rocket stove, and a charcoal grill with about 50 lbs of briquettes. Not to mention the gas cooktops out in the summer kitchen. I think I'm set if the power goes out it this respect, how about you?  I guess you could always just open up the can or jar and eat it just like it is. Speaking of which, can you use, or do you own a non electric can opener? I can my own jars so all it takes is a church key or bottle opener to open my jars. It makes my life simpler. You will burn more calories trying to stay warm.

Water is the most overlooked item you have to have. The average person needs at least one gallon of fluids per person a day to maintain their bodies. Just for general purposes we keep 5-5 gallon bottles of water in our storage building. This is set aside for drinking water. You can add at least another gallon of water per person each day for hygiene needs.Sure you can melt snow for this purpose providing you have access to fairly clean snow. We did this every winter at my grandmother's house. There were no de-icing products, animals, cars, factories or the like where we gathered this snow from. It was clean snow.

Now that food, warmth, water, and lighting are taken care of, what about activities? Do you have activities that you can do without electricity? I mean, sure you can go outside to make snow angels and toboggan down the closest hills for a while, but eventually you'll have to come indoors. Now what? Nothing makes time sluggishly tick away on a clock than doing nothing. Ask me how I know this? Go ahead and ask me. You can't hop on the internet, lighting is limited, even your  smart phone and computer batteries will run low and have to be recharged. For us, a pile of books, spinning, crocheting and knitting eats away at boredom. We'll often loose track of time and hours while go by. What will you do?

Just some thoughts on being the prepared for this first winter storm of 2018. Many more will come before it's spring again and then we prepare for hurricane season. Yes, even in the north GA foothills. Hurricane Irma taught us that lesson.

Nothing is impossible.

Sunday, December 2, 2018

Sunday Stroke Survival: Evolution Gift Wrapping Post Stroke

Before my stroke, gift wrapping was no problem. But gift wrapping post stroke is a nightmare. Thanks Barb, for the topic of this blog and Christmas is upon us once again.

Regular gift wrapping post stroke involves using nose, knee, elbow, or whatever other body part you can use to help hold the paper while you tear tape, position it, and press it down to hold it together. Being a contortionist would help, but I am not one.  It was too much work when dealing with upwards of ten presents to wrap for the holidays birthdays were bad enough.

Now being an extraordinary, creative person, my gifts were a feast for the eyes. Plain and ordinary gift wrapping wouldn't do.You see I did a Japanese gift wrapping technique of folded paper for my gift
Ribbons & bows added later
wrapping. Intricate pleats and folds were made into the wrapping paper for each and every present I gave. No plain ribbons or bows either. Each present had a gift in the wrapping as well. Be it a hair clip, a refrigerator magnet, or something to keep and use...a double gift. You see our family does handmade gifts to exchange among ourselves. We would go bankrupt buy gifts for each other. I have seven brothers and sisters between natural and adopted siblings, their children alone equal twenty four plus their children is a passel of gifts to swap. Even if I only did my immediate family of children and grandchildren, I'm talking about fourteen gifts. It's enough to put a serious hurting on anyone's wallet having to buy one present a piece. Let alone wrapping those presents one-handed. Nobody gets only one present.

So the first year after my stroke, it was your standard gift bags. None are gorgeous or special. Anyone could stuff a present into a premade box or bag. But what's a one-handed person to do? I've never been a fan of premade boxes. Although colorful, after a while you end up with several presents in the same printed box. Nothing original or creative about them. Totally impersonal. It gnawed at my creative, extraordinary nature. How could I make these special like my old gist wrapping? I couldn't. Being two weeks out from my second (third) stroke, it was impossible.

The next three years after my first stroke, I tried a different approach. I used rubber stamps to decorate plain gift bags and boxes. It added color, glitter, and decorated them. It was better, but no where near as creative as my Japanese pleated gift wrap. It did have some duplication of designs. How many different rubber stamps and ink can you buy for just one holiday? Every year they came out with four or five new stamps to keep things fresher. There is a limit because you have to store them all for the next year. It turned out to be more expensive than any other option in stamps alone.

For 2017, I sewed fabric gift bags. I was definitely more creative. There are a small ton of holiday fabrics to pick from. I could customize the sizes of the bags too. Each were creative and unique. There isn't a local fabric store in town besides Walmart. So I had to go to a neighboring city to find a Joann's or Michaels to get the variety of fabric and ribbons to made them unique.

That brings us to this year 2018. I could have done the same as last year, but decided to do something different, but the same...sort of. If you do the same thing every year it's not creative, just repetitious and boring. I'm going back to paper gift bags. The twist, I downloaded a pattern to make the bags myself. I can use store bought Christmas gift wrap and plain paper lining to strengthen the bags. I would create them myself. With the holes at the top, I can thread an assortment of ribbons. The pattern is simple enough with very few cuts and folds. All of the folds are straight. A glue stick to put it all together, and I'm done.

I could even make them out of Christmas fabric, iron-on interfacing, and fabric glue next Christmas. I thought about it too late for this year. But next year, I'm trying a new crafty/old crafty thing for Christmas too, so fabric bags will be more appropriate. For now this cures my creative, unique, handmade gift wrapping bug.

Maybe by next Christmas, I'll have some use of my nonfunctioning hand and fingers back again to go back to my Japanese folded paper wrapping technique. It's two more days until my neurosurgeon gives the final thumbs up for the rhizotomy and schedules me for surgery. I can only hope.

Nothing is impossible.