Sunday Stroke Survival: Help to Keep Walking on MY Feet

As y'all know I'm waiting on yet another approval for a new AFO. These braces are just too expensive ($1500) to pay out of pocket for one.  Don't we all have a bag of money just lying around collecting dust. I don't know anyone on Social Security Disability that could afford it. So I call, and sit and wait.

Actually, I don't just sit around. I'm "working and walking" here. I've got critters and a garden to tend, and a harvest to process so we can eat. It just makes economic sense and cents. A $3.00 packet of seeds produces enough green beans to feed us for year. I don't know how groceries prices are in your neck of the woods, but you just can't buy that many pounds of fresh, cans or bags of frozen green beans for $3.00 these days even on sales. I'm talking about 208 servings worth of this one vegetable for us two widow folk on this homestead for a year's worth. That's not counting the beans that go into soups, stews, etc. Alright, I spent $9 on three packets of seeds, but even at that, you'd be hard pressed to do it.

The chickens provided us compost to feed the plants and their egg shells provided the calcium so the tomatoes and squashes do not get bottom rot on them. Heck, the chickens even scratched it all into the soil two inches deep for me. They more than pay for their keep. They feed us with eggs and meat. There's even enough eggs to sell to get some pennies in our pockets. Plus, they offers us their daily chicken "tv" show from dawn to dusk for our entertainment. We love to watch the Silkie, the smallest hen and is the lowest in the hen's pecking order, bosses the rooster around the yard. Now that the rooster has all the girls (16 hens) to look after, he doesn't have the time to attack me. Meanwhile, he's loving all the attention. They're like all those girls fawning and fainting over Elvis Presley... in my day. "Elvis, oh, Elvis!" Yes, I was one of those girls too.

Mel swears that all the dinosaur sounds for the  Jurassic Park movie was made by chickens. After ten years of raising chickens, I can believe that. But they are one of the critters I care for, feed, water and gather their eggs each day. So I'm up and doing. The quail aren't as entertaining.

While waiting on Medicare to making a decision, I'm changing my AFO between AFO #1, #2, and #3 about every three hours just so I can keep walking and doing. Before the sun comes up, I'm making bread and breakfast. Sun up, I'm in the garden weeding, watering, tending, and harvesting the crops trying to beat the heat of the day. I'm tending to the cats, dogs, and chickens. Lastly, I'm preserving the harvest for the rest of the day. There's harvest that goes into the dehydrators, processed for canning and freezing, and making our main meal of the day.

While processing the vegetables, I've got my AFO off while I'm seated on a stool. I've got my affected leg and foot propped up n the counter. Not very lady-like or sanitary, but it works. It's not higher than my heart, but it's the best I can do for an hour or two. The brace gets (now I'm starting over with AFO#1 again. The main difficulty is that my foot starts hurting after 30 minutes, and I have to stop and change braces. By the time dinner is fixed, all my braces hurt my foot. I'll plop myself into a chair uttering a small, "ouch" with every step along the way. Changing braces only gets me five minutes of wear now. I make it up the two steps from the back porch into the house after our television time (2 1/2 hours) Currently, we are watching "Arrow" and the new season of "The Protector" having finally watched the last "Supernatural." I pull my shoe off and loosen my AFO as I sit in front of my computer to blog, watch YouTube, and answer emails. At this point I'm willing my foot not to hurt until I take my bedtime medication...not that it relieves the pain, but I can finally take the brace off and go to bed. It's the only way my foot stops hurting.

But it's not off to a peaceful slumber yet, I pry the AFO off my foot. My foot is now red and swollen. I pull off my sock and survey the damage the day has wrought on my foot, ankle, and calf. I grab my lotion and massage all the really red pressure points of all the AFOs. I'll continue this until the circulation is restored and the redness dims to a rosy pink. I'll give the unaffected leg a cursory rubdown because the diabetic neuropathy is raging with redness and the customary pins and needles. I know if I don't do this, I'll be rudely awakened with leg cramps within a few hours. My foot needs at least four hours of no pressure to stop hurting. How do I know this? It was trials and errors at various time lengths between bathroom trips. Six to eight hours of heart lower than my foot and no AFO is the rare occurrence but it's the best with my schedule and bladder.

It's been a month already. I've been calling Hanger every two days to check on progress of which there is none. Can I do less while waiting? Yes, but I'd be thoroughly bored and stir crazy like last year. I also can't afford to slow down and eat this winter neither. HELP! What else can I do? I can't ask Mel to take over my job too. Her to-do list is as long as mine.

Nothing is impossible.

Sunday Stroke Survival: More After Effects of Baclofen Pump

Sigh! You'd think I'd catch a break every now and then from Murphy's Law. This post isn't one. I told you that the spasticity was back after my pump was removed in July. My arm slowly drew up into it's greater than 45 degree angle to my chest again. The spasticity pain levels, which for me, is constant with peak activity bordering on excruciating. The constant pain with it stationary is now a 5 out of 10 with spikes up to 7. Still it is still livable. I mean, I was much higher before the pump placement. I'm still managing to work around it with an occasional verbal ouch or grimace. So far, I haven't streamed tears in silent agony. But it's still early yet. Believe me I'm not looking forward to the progression. Hopefully, I can have a new one implanted before I hit that again before the end of the year. I'm crossing my fingers and toes.

Right foot spasticity

I haven't spoke about the spasticity in my foot and ankle, I don't think. But the spasticity has returned in that area too. It's a strange type of spasticity when I compare it to my arm. It has to have a trigger most times, like a weight bearing step before it really kicks in. While building up my stamina with walking, I noticed that the area where I used to get pressure sores was getting tender. But with a good night's rest, the foot would be good as new. My right foot without my AFO is as pictured except my big toe points towards the sky and all the other toes curl under.

Well, the spasticity in the foot ankle are putting up a serious fight with my AFO. I can't stand or walk more than an hour before my foot becomes rounded with swelling. This could also be because of the heart functions. But with the swelling, more pressure was exerted on the right side of my foot resulting in yet another pressure sore developing in the same old spot. So this week I've been dealing with it. It hasn't ruptured the skin yet and blown off the callus. For the last four days, it's just sore, gushy under the callus, and an angry red color. Not even eight hours being off my feet, sleeping with my leg elevated hasn't helped. I can barely walk more than ten steps without pain. Once those ten steps are reached and the pain starts and after that EVERY STEP is painful. Talk about putting a crimp in my style.

Usually, this lasts two days before the area becomes an ulcerated sore. Not that this isn't painful, it is but there's an ointment that helps the healing and deadens the pain somewhat. Still there is a treatment for healing the sore. In the current stage, it's basically stay off it. That's nearly impossible. I do have to go to the bathroom, get a drink every now and then, and eat. To do these things I have to walk. Sure Mel could and would help with some of these things. She has helped when I've asked her. She even remembered something I had forgotten (sort of). We started nightly warm foot soaks with Witch Hazel and Apple Cider Vinegar. Both have astringent/antifungal/antiseptic properties to combat the swelling, soften the callus, and disinfect the area. It can't hurt. Besides the warm tingling sensation feels good.

I have an appointment with my PCP tomorrow, if it hasn't ruptured or resolved by then, I'll have him lance and drain it. He may or may not do it. If he does, the ointment I have will work and it can begin the healing process. It usually takes less than a week for the pain to go away even though it's so much longer for it to heal totally. My options to prevent this from happening again are options that may not be possible for several months. A new AFO- this will be my 4th in 7 years.Foot Reconstruction surgery- ugh! more surgery that might have to wait or carry over until next year, Botox injections- done that, didn't work well, Baclofen pump- waiting to heal from last surgery, radioactivity, and whole body scan to see if it spread...cancer trumps all. I still have a rotor rooter procedure on my carotids.

It seems the more I get done the more things pile up behind it. But then again...

Nothing is impossible.

Sunday Stroke Survival: Getting Ready to Go Under the Knife

No, Not really. No scalpels involved this time. It's more like an epidural you get during childbirth. The only problem with this is that all five of my children were born via natural childbirth and no drugs. I have no idea what an epidural feels like although I've assisted in a few.

On the other hand, I've had slews of steroid injections and four back surgeries. It can't any worse than those. But still, I can't help being a little nervous even after discussions at length with the neurosurgeon last week. Even though this procedure has been done since the 1960s and my surgeon has done thousands of them, there's always the oops factor.

The fact that this trial is done with a local anesthetic is comforting to me. I'll be awake to hear what's going on. For some people, they take the attitude of wake me when it's over. That's not me. I've wanted to be awake for all my surgeries even though the surgeons wouldn't let me. Darn! I've just have this thirst and curiosity for medical knowledge. I have this uncanny ability to recall what was said and sounds while under anesthesia usually within two weeks post op. I've shocked more surgeons at my post op visits by telling them their music choice and snippets of conversions during my surgery. This time I'll be awake for the full hour. I'll even be talking to him and the tech. I like that.


From what I've read, the worst part of the whole trial is the tape (and removal) and not being able to shower. Honestly, I can handle the no shower. I regularly do birdie baths, pit stops, or sponge baths during the week and fully shower for my Saturday night (afternoon) bath. It just takes too much energy and time to shower more often unless I get truly filthy. With the advent of spring, that time is upon us again on the homestead.

I expect to be a little sore the morning after. I usually am after the shots in my back but nothing I can't live with. It's minor if it relieves the constant pain and spasticity I'm dealing with now. I'll spend the week playing with the programs for pain relief and stimulation settings. Then about a week later, I'll give my results to the doctor. Whether a permanent, implantable device decision is up in the air until then.

I'm ready to take my life back!

Nothing is impossible.

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 yesterday...it 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 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 Stroke Survival: Is Fear Holding You Back?

A couple of weeks ago, I mentioned about fear holding me back from having surgery sooner. I also posted this picture with it. The words are actually words to a song. If you listen to a Christian radio station, you might have heard it. Zach Williams, the artist who recorded this song, has a couple of songs which hit home for me. I'll post both the songs that spurned me into action and this one later in this blog.

This song strengthens my resolve to continue waiting for the surgeries that may fix the spasticity and the pain that accompanies it. These three lines of this song reminds me that God is in control.  Theodore Roosevelt said it best when he said, "Nothing in the world is worth having or worth doing unless it means effort, pain, difficulty" even waiting.

But waiting isn't without its own trials. Fear creeps back in. Is this interminable wait because it's the wrong decision? This is the biggest one for me because I'm always questioning my decisions. Yes, you are not the only one thinking this in whatever choice you make. Conquering the effects of pain from the spasticity on my body and on the emotional front is another huge trial. The spasticity in my arm causes my trapezius muscles in both shoulders to strain causing unbelievable headaches, and my spine to contort as I try to find comfort. Which, in turn, causes more muscle aches from poor posture. But the worst, is Mel asking me all the time, "What's wrong? Are you mad at me?" Because my happy, smiling demeanor has changed to a frown or scowl most days because I'm dealing with this pain. I actually look haggard and tired as I go about my daily routine. I find myself doing the bare minimum to get by which is totally out of character for me.

Combating these fears and concerns is exhausting! A small voice keeps reminding me that God is in control and He has not forsaken me. Thus fear is abated for a time, but it returns. Yes, even for me a minister, it does so don't beat yourself up about it. Hey, I'm only human! God understands this through Christ.

In the previous blog, I mentioned my fear of dying as a reason for not coming to a decision sooner. You have to admit that there's not much worse than death. Although, some people say death would be easier than living post stroke. I don't feel that way. Now after years, first with the Fibromyalgia  and in combination with the spasticity, I can honestly see their point. Don't worry. I still don't have a death wish. At what point does your desire to be pain free overrides your chance of death? I reached that point, and then some.

 So what is fear holding you back from doing?

Now as promised above the two songs that spurned me to action and give me the strength. Enjoy. May they touch your soul as they did mine.

Nothing is impossible.

Sunday Stroke Survival: Dealing with Pain

Since I decided to forgo Botox this round, as you can imagine, the pain that accompanies my spasticity has been a constant companion. Every waking moment it ranges between 7 to 8 and worsens while sleeping. At times, I'll hit 9 or 10 several times a night.

The neurologist I saw for the Baclofen pump, changed my zanaflex to dantrolene to see if it will work better. Meanwhile, I've boosted my oral Baclofen up to the 80 mg maximum again during the slow build up to 100 mg of dantrolene. (1 capsule a day for one week, then 2, then 3 until week four when I take it four times a day) Meanwhile, I'm painfully biding my time. So far, I'm tolerating the new drug well. No outward allergic reactions other than being tired, but no relief either. I'm currently on two pills a day.

You may be wondering how I'm managing my pain. Honestly, the best I can. When the pain level reaches 8 on the scale, I'll stop whatever I'm doing and sit. Not that sitting relieves the pain, but I can't function. I'll keep my mind deterred, somewhat, with games or blogging. I'll even window shop on the computer. Anything but sit idylly by focusing on the pain. I do this until the pain drops a level, and then I'm back at it. This week on the homestead, I'm canning cream soups and broths, and chicken since I butchered two roosters of four that needed culling. I honestly made it harder on myself by not doing this when they were 12 weeks old instead of six months. If they had been under four months old I could have just frozen them. But that's okay, I needed to make cream of chicken soup and cream of mushroom soup anyhow. So far, I've canned a case each of chicken, each cream soup, and two cases of chicken bone broth. Not too shoddy even with the pain I've been in.

This week the back ramp and deck the between the storage building and the porch went in. It wasn't cheap, but well worth every penny spent. The handyman, Ronnie, is also a certified electrician also. Double YEAH! He'll straighten out the panel box and wire the outside buildings for us. He can even handle some of our plumbing issues too. I love it! One stop shopping! I don't need the other "professionals" who won't even give me a call back. I've been waiting on the other guys for weeks. I spent over a dozen years as a business consultant, this is not how to grow a successful business. Even common sense will tell you this.

But as usual, I digress from today's topic. When I know the cause of my pain, in this case spasticity. I only baby the pain when I can't stand it and when it physically stops me from what I'm doing. Until then, I take frequent breaks, but I keep going. While I've got pain medication, I use it as a last resort. Usually when the pain makes me physically ill. Who wants to be in pain AND vomiting too? Not this gal. A 30-tablet pain prescription med will last me a year. Hot showers help, but I have an issue with them. While the showers help with the stiffness, it also raises my heart rate. Then I'm swapping muscular pain for chest pain with difficulty breathing. It's a balance game between the two. I also can't live in the shower. Biofreeze helps too. I love this stuff. I'll also add Sriacha to foods to increase my capsaicin and garlic to my diet to fight the pain internally.

When I've tried everything and it doesn't bring the pain down to manageable levels, nothing is left but to cry. But even crying does no good. I just end up with a blotchy face and s runny nose.

Nothing is impossible.

Sunday Stroke Survival: Power Naps

I used to take power naps like Einstein. I rarely slept more than four hours a night unless I was sick or drugged and I did it for thirty years!! During the day, I'd close my eyes and instantly fall into a dreamless sleep for twenty minutes and awake totally refreshed ready to take on the world again. I would burn the midnight oil often until 3 or 4 in the morning and get up for work the next morning. And then, repeat the process as I wrote and held down TWO full time jobs for decades. These are the classic power naps.

Since my stroke, that life is a distant memory. Mainly the chronic fatigue I feel. I now sleep six to eight hours a night when my body allows it. Spasticity has a weird sense of timing. The pain can cause even a heavy a sleeper to awaken in pain. I need those six hours at a minimum to feel rested. But just getting out of bed is a tiring struggle and it's just the beginning. How I managed all those months of waking every two to four hours to give my husband his morphine had to be God's grace upon me that I could still function. I depend on a two hour nap during the day to make it to bedtime. It was explained to me that I was burning through my energy in the recovery process and spasticity. What it amounted to was for every action I accomplish during the first four to six hours after rising used every ounce of energy I accumulated during the night's rest.

Now I literally pass out/doze off in exhaustion. I'll be sitting at the keyboard ignoring all the warning signs of my energy level reaching empty, and suddenly wake up a couple of hours later. It doesn't matter if I'm lying down or not, I'll nod off. Needless to say I work my driving times or running around times in the first four hours or after nap time. So my day can start at 5AM and can continue up to 10AM at the latest. It will be after 2PM before I can function outside the house in the public again.

These aren't power naps any more, or are they? Sort of. There's no definitive answers after a stroke. It's always, it depends. Before my stroke, my gas tank was filled full after a twenty minute nap. But now, I'm running half empty upon awakening after two hours of napping. I'm good until probably 6PM. Then I'll doze off in half a hour  for every two that I'm awake increments until I get my behind up and crawl into bed at 10. I have to stay awake until 10 because of my night medicines.

As much as I hate to admit it, part of this new energy cycle cannot totally be blamed totally on my stroke and an abundance of muscle relaxers, but age.  A few years ago I wrote a blog post about 60 being the new 2 because that's how I felt like my life was like post stroke. I still do! I often say, "I'm not a Spring chicken anymore or even a Fall hen." I also say, "I'm a tough old bird." All of these are true. If I was a chicken, I'm so old that even pressure cooking me for the maximum amount of time...I'd still be tough to chew (think-shoe leather). The fact is, I'm slowing down because my body is older. But I can still run circles around some of you! (wicked grin) You know who you are.

So now if I have to, I equate power naps as energy naps. I can't do without them. They are a MUST DO. Where as before I might skip them, now it's an everyday necessity just to get through a day. Even the little doze off periods in the evening are a fact of my daily life. Just like most, I have a honey-do list except I'm the honey that must do. If I don't go to the grocery store, I'm scrounging for something to eat. If I don't service my car, it'll stop running.

 My scheduling has been thrown out of whack with road trips and house down-sizing marathons on weekends with my children. But I'm coping with extra naps/doze off periods when they are taking items to Goodwill and Faithworks. Even if I just take a supervisory role, it's mentally taxing.  Sometimes that's worst than hard physical labor. Just separating 17 years of living in this house/40+ years worth of things into donate, sell, and I want rooms of the house means multiple trips down memory lane. This makes everything take twice as long to accomplish. Partly it helps and hurts my grief at the same time, but I realize no matter what I do, it will be this way. Yes, I did say rooms! Since I basically only use three (four if you count one bathroom) rooms of my house out of ten, there's space. I can't believe I had three Christmas trees in my attic!

Big furniture is going out of the door on each session which frees up more space, but I've filled them with bunny cages (grin). They have a room all to themselves now. But as much as I enjoy my animals, they too take a toll on my energy levels. But I have to say, it's taken SIX rabbits to equal the amount of care for energy expenditure that my husband took on a daily basis. The rabbits are part of my healing process. I give them love and get love in return from them. I'm relishing the fact that all this STUFF is leaving my life. Down-sizing has been a catharsis for me even though it is exhausting. So many things on my plate has been tiring also, but soon it will be over with. I figure by November or December tops, it will be done except trying to sell everything. If I thought this house 2,000 sq ft house was too big for me when it was full, it will seem cavernous when emptied. Then I'll know it will be time to move on.

In the mean time, power naps will be my saving grace to get me to the end of each day.

Nothing is impossible.

Thursday's Tumbles and Stumbles

Well after a week of numerous tests and 'ologisitis to find what was going on with me, I finally have the results. It's gonna be filed under "Murphy's Law" or "It could only happen to you."

It's not what I thought, but I was partially right in that I blamed my Botox, but it turned out to be a list of things going on at the same time.

Macrobid has a side effect of muscle spasms. I was on it for my urinary track infection. The Macrobid side effect was fighting the Botox and I got caught in the middle. Thus the increased spasticity. I can no longer take Macrobid so that leaves sulfur drugs. The neurologist increased my Zanaflex to try and get control of the spasms. It has worked although my heart rate has dropped into the high 50s and low 60s which my cardiologist is wary of.

I was also going through a Fibromyalia flare. This was confirmed by the rheumatologist which accounts for the spike in pain level. He added Lyrica to my Cymbalta to combat this.

The total loss of urinary countenance was caused by a failure of my bladder sling. It failed by ripping loose from the right pelvic ligament it was attached to. This was confirmed by  my urologist. The ligament will heal on it's own. It is a minor tear, but will cause the hip to be "a tad" (his words not mine) more painful. The failure was most likely brought on by the urinary track infection putting too much strain on it because I've had so many in the past six years.

I'm left with a couple of options regarding the urinary incontinence 1) go back into diapers full time (expensive!), 2) catheter (least favored by all), and 3) having another sling installed (the best option).  With the best option, my beloved will have to go into respite care at the nursing home for a couple of days while I'm in the hospital. My urologist told me with my complicated medical history, I would have to be admitted.

 My hubby will hate it. Heck, even I hate the idea. He has become so dependent on me, I can see his stress level mounting off the charts with this. I may wait until after Christmas for this surgery. I'll need the time to lay in some quick fix groceries and chocolate for him. Everything is better with chocolate, right? I'm banking on a huge sale of after Christmas chocolates to carry him over to Valentine's Day. It's crazy to live your life around after the holiday candy sales because after Mother's Day there isn't another candy holiday until Halloween but we do what we can do.

Okay, I think that brings y'all up to speed with me. The hubby has a touch of Bronchitis, so I'll be watching him closer in case he goes into pneumonia. Me? Worried? Nah! Been here too many times before.

Sunday Stroke Survival~ Oh My Aching Back

Everyone has an issue with their back from time to time. Either they "slept wrong" or "twisted it," or lifted something heavier than they should have without help. Sometimes even with help you get a tingling or pain that runs down your legs or up your back, or centers in your hip area.

You'll see little, old ladies stomping their foot on the ground trying to get it to stop. Notice in the picture the sciatic nerve runs in the foot also. But sciatica is not just for old folks like me, it strikes young folk too. When your back hurts and runs down your legs or travels along the path of the sciatic nerve, it called sciatica.

Most times, the occasional bout of sciatica is not a problem and short lived. It's when the problem is chronic that poses infinite possibilities of the cause. The sciatic nerve is a long one. When you do everything the specialist tells you and you are in pain weeks later after the offense.

That's what happened to me. After my helicopter mishap and my lower sciatic and half of my lower lumbar spine was crushed, rebuilt and fused, and rods put in place to stabilize it. I developed hip pain in my replaced hip.

At first I just thought I was overworking my prosthesis. I had gone back to nursing again. This time in a hospital in the post-surgical floor. With my limitations, working on choppers and ambulances was out of the question. I went to work after teaching 20 kindergarten children for eight hours and had to look forward to an eight-hour shift on the floor. Nothing unusual about that for me at the time.

The pain increased over time for about a month. I swore to myself to be kinder to my body. But with five kids at home/school and two full-time jobs, it was nearly impossible. I made a point of sitting correctly. I did my back and hip exercises as I was supposed to, but still the pain persisted becoming nonstop.

One night, the pain became unbearable. I limped and hobbled through my shift, and barely made it home without screaming out. Needless to say, I called my family doctor the first chance I got. I couldn't work like this at either job or care for my family. Both my legs had gone from tingling pain like they were asleep to lava flowing. I could barely take a step without my pain level jumping to an eight out of ten. I was not a happy camper at all.

An x-ray showed boney fragments from my spine were pressing against my sciatic nerve was. A "Hoover Vacuum" type surgery was needed to remove them to stop my pain. No, a Hoover was not used in the surgery. It's just what I called it to differentiate it from my previous procedure. My doctor was surprised I walked into his office. If I chose not to have the surgery, I was facing being permanently in a wheelchair within five years with permanent damage. So I hopped a flight to Atlanta for the procedure. Keep in mind, I was only thirty something.

The cause was degenerative disc disease. Another strong hereditary factor gone berserk. Aren't I the lucky one. If I had not had accident it might have shown up sooner or later, but the sciatic and lower lumbar had been concreted together five years prior. Now it was the upper lumbar affected and the pieces migrated down with gravity like everything else as you age. The surgery was a success pain wise, but a failure in that the nerve was damaged and I lost all sensation from the knees down. It took two years for the nerves to heal. I started getting quarter sized patches of sensation back and now only spots about the size of a quarter still remain numb. The procedure is repeated every decade or so to remove the disc fragments before they become trouble again. It's that time again but now we are in the thoracic and neck regions of the spine, but we are delaying the procedure for as long as I can. But then, what impairment is caused by the disc fragments or the stroke. It's a juggle to decide.

Now decades later, I have a stroke. The doctors all say that I was lucky not to lose sensation as well as paralysis. But I don't know. Of the two, the loss of sensation was easier to deal with. With sensation loss you just have to be aware of the position of the affected body part, but you still have movement. That just takes a quick glance and a little focused effort. With the paralysis, there is no movement. But then...

Nothing is impossible with determination.

Sunday Stroke Survival~ What Goes Up...

Credit

When I was in inpatient rehab, I made the statement..."It's not if I fall but when I fall." Well, I did it again Wednesday.

Let me backtrack to Tuesday's OT. I awoke later than usual so I decided to double up on my Baclofen before therapy. The tightness in my bicep and pectoral muscles gave me an inkling that therapy may have to stop after this week. Higher tone is the precursor for me that the Botox is wearing off with the spasticity to follow quickly after. Therapy confirmed it even after ice and heat were used but the fingers still stretched.

I got home to find the sitter gone and daughter #2 and her youngest son at the house. Triston (15 next month) is my yard man. They'd been at the house long enough for him to mow the front and half the back before I came home via the tractor. Next came the mandatory Skype call to our #4 daughter in AZ. During that time daughter #1 comes in from Savannah with daughter #2's oldest son and her two boys (13 &7). A houseful! I set each of them on a task, mostly outside to keep them busy. As you can imagine, my hubby and I were both exhausted by the time all of them left.

Wednesday morning was bad from the start. I had slept hard so everything decided it wanted to play at Rice Krispies (snap, crackle & pop). With a groan and several attempts, I got out of bed. I waddled my way into the living to administer my husband's medicines and empty his urinal. Then it was, hop into the shower for a bath before therapy at 11. Needless to say, all the energy from a good, solid night's sleep was diminished by half by just these simple acts including getting dressed. Getting dressed was more of a chore than it usually was. I got my panties in a wad, fought with my compression knee-highs, and my shirt wanted to bunch up and make life difficult. But I fed the animals, watered them, and gave each of them undivided attention that they craved. So now I've used six of twelve spoons via the spoon theory of energy.

Before leaving and the sitter arriving, I checked in with my hubby to see if he needed anything. Coffee. Keep in mind that the pressure sore on my foot ruptured three days ago and walking is difficult, I waddled to the kitchen and made his coffee. Thanks to my #2 daughter buying him a Keurig one cup coffee maker for Christmas, this was a quick fix.

But then he mentioned the bottom sheet on his bed had worked loose. I managed the tug and pull the fitted bottom sheet back into place. I might mention at this point, his mattress is an air mattress with a hose that is attached to the electric compressor unit... another spoon or a spoon and half gone.(7-8 spoons expended with 4-5 left until nap time at 3pm) Knowing I had therapy (2-3 spoons, fix lunch, administer meds, and odd & end things before I got a nap another 2-3 spoons worth).

The sitter arrived and I headed out the door. Fifteen minutes to get to the rehab place. I stepped onto the ramp and surfed hanging ten halfway down the ramp. It had rained heavily the night before. I landed in a half split and on my rump. For once I was thanking God for my six ax handles across bottom...plenty of padding to land on.

I did a quick assessment. Everything moved without much pain so I rolled over and ungracefully got to my feet. I rushed at top speed, a glorified slow walk, to my car and drove to therapy...not even concerned what I looked like. I was going to be late and I hate to be late.

All seven traffic lights were green and no serious idiot drivers were met. All the handicapped spots were taken. I mean really! There are only twelve of them! I ended up parking in a regular spot about three hundred feet from the door. That doesn't sound like much but try doing it with an open pressure sore and opening your car door wide enough to get out of your car in a regular size parking space.

Anyhow, I wobble through the door and look at the clock over the check in, three minutes late. My OT escorted me back into the therapy room a moment later. I began telling her about my morning. She asked ice or heat? I answered both. Ice on the spastic muscles in my bicep, pectoral, and left wrist that was beginning to smart and swell. Heat to the shoulder, neck, lower back, and the tricep which were knotted up from the fall. She off offhandedly mentioned I might want to get an x-ray but bit her tongue at the look on my face.

Well my therapy session did not go well, but then there is always Friday. Come Friday we'll make an assessment on whether or not to do another week or stop until after my next Botox injections. While I was resting between stretches, she grabbed a towel with a bottle of alcohol and cleaned all the scraped areas that I didn't know I had. Believe me when I say I felt every single one after the alcohol. My wrists, right hand, and knees had too many to count sharp intakes of breath.

We both examined my left, only one working right now, wrist. No point tenderness, but swelling, pain upon moving the thumb and pinky fingers but not sharp enough for a break. Yeah, I know what that feels like. A humongous bruise turning shades of black and purple on the outside edge of the palm, but both of us didn't think anything was broken. So I wrapped it up in an Ace bandage and called it a day.

Trying to do anything with an Ace bandage on your only working hand is ridiculous! Everything else I'd planned to do went out the window. The exception was changing out my husband's M6 oxygen tank. It was so much fun changing out the regulator with three working fingers. I won't even bother to go into it here. I'll leave it to your imagination. But you gotta do what you gotta do. I did leave putting it back in its bag for my hubby to do. I did try but bent my thumb back farther than it wanted to go. Stifling a scream, I grabbed it all and carried it to his bed.

Thursday morning was a bear. All the abuse I put my body through the previous day told the tale. Accidents always feel worse the day after. I basically took it easy. The hospice aide was here and daughter #2 and our oldest granddaughter (14) were here to pick up my slack, but God knows I needed the help. Shuffling around like a little old ( much older than I am think 90+) lady was an improvement. I got on Facebook and my emails typing with three fingers. I didn't think that there was one part of my body that didn't ache.

I looked at a pair of fingerless gloves that's on my loom for my eldest granddaughter for her birthday and knew it would have to wait. What's to sense of having a do nothing day when you can't do something you want to do? It's one of those Grumbling, growling moments.

Friday was OT again. One more week of therapy and we'll be done until after the next series of Botox. (sigh) How was y'all's week?

Nothing is impossible with determination.