Sunday Stroke Survival: Silent Reflux

When I asked my surgeon why I was still having a hoarse voice and pressure where my enlarge thyroid was, he was stumped. The hoarseness was one of my symptoms of my thyroid cancer. The pressure he chocked up to scar tissue. For the hoarseness, he decided that a visit to an ENT (ears, nose, and throat doctor). It turns out that the hoarseness and pressure were cause by silent acid reflux.

By placing a camera through my nose and down to my trachea, the damage done by my stomach acid was evident. There were burns on my vocal cords. Unlike the GERD (heartburn type) that my internist pulled me off Plavix for leading to my stroke, this type of acid reflux had some strange symptoms like acne, persistent cough, sensation of post nasal drip, and trouble swallowing. The exact same complaints I told my PCP about stating my allergy meds weren't working.

A simple prescription of Pepcid rather than Prilosec actually fixed all these complaints. My allergy meds are working fine again. Plavix and Prilosec are contraindicated.  Pepcid over the counter is easy to come by, but the prescription product is in short supply. Monthly I'm having to call around to different pharmacies to get my 60 pills for my prescription. Over the counter, I can get the same thing but at the dosage the prescription is equaled to 120 tablets a month at a cost of $84 which my insurance won't cover. I pay $10 with my insurance.

Why the shortage of the prescription version? I had to go online to find out. It all has to do with Zantac being pulled from the market last year. All those patients plus new patients were switched to Pepcid. But you'd think after a year, the company would have figured out the production increase by now, wouldn't you? Well, they haven't. So I go through the list of the five pharmacies within a 20 mile radius of me each month praying somebody's got it. For the last three months I've been lucky and found it so far.

The fact is all of my symptoms of post nasal drip, acne, hoarseness, increased trouble swallowing, and that nagging cough disappeared within two weeks on this medicine. It was like a miracle cure for something I never knew I had wrong with me. But it fixed all the little things. Unlike the GERD I suffered with a dozen years ago, heartburn isn't one of the symptoms. In fact, the symptom that I had in common with the two was my inability to sleep on my back. With the GERD lying on my back brought on heartburn, while with the silent reflux, it brought on shortness of breath. I literally could not draw a full breath. This too has disappeared while taking this new medicine.

I can't tell you how relieved I am in spite of the difficulties in filling this prescription. Now if only the drug manufacturer would get it in gear so I won't have to go on a scavenger hunt each month for it, I'd be one happy camper.

Nothing is impossible.

Sunday Stroke Survival: Picking Figs and Cherries

This week I've had a song stuck in my head as I harvested the cherries and figs. Can anyone guess that song?

It's just one of those jingles from my childhood television watching. But as I picked the cherries and figs, it went round and round my head. Each time I picked one and dropped it in my five gallon bucket it made a plopping sound, and after a while, the juices made a slight fizzing sound.  

Mel thought I was crazy when I chopped the main trunks of these trees at four foot tall as they grew, but there was a rhyme to my reasoning.  I knew that when we would eventually espalier the trees or let them be, they'd be easy to harvest. The heavy fruit covered branches would almost sweep the ground. With careful pruning each winter, the new growth, where the fruit would grow, could be simple to harvest. "Ah! What a relief it is!"

Granted these trees were only planted three years ago so the harvests are small. I really didn't expect anything more than a couple jars of jam and some fresh eating until year five. Just like with the peaches, these trees flowered up beautifully in the spring. The bees were happy. They are still buzzing around the late bloomers. And just like the peaches, the fruits are about half the size they should be. It's been a crazy weather year for us with the winter chill and frosts not leaving us until mid June. Now, I've picked a five gallon bucket of each fruit this week! We are blessed!

By planning, I adjusted the height of these fruit trees around my limitations. Knowing my vertigo issues helped me do this planning. In caring (pruning/fertilizing) for these trees everything is no higher than my height. The same goes for harvesting. We will probably spend most of this winter espalier these trees. AKA, digging post holes and running wire to twist and tie the branches to before spring. I'd planned for posts every six feet and four strands of wire like we did four our raspberries, blackberries, and grapes. 

Yes, the end yield of harvestable fruit is reduced, but in actuality one tree would yield enough for us for several years in one regular tree left to it own devices. But I'll be able to harvest each fruit as it becomes ripe with no loss of unreachable fruits. By planting two of each kind of fruit provides better than average pollination (even with self fertile trees) and a better harvest. When insects or diseases strike at a tree, it will be much easier to handle too. If netting is needed to prevent birds from taking more than their fair share of fruit, It's much easier to throw netting over a 5' tree than a 20' tree even without disabilities. 

An expected bountiful harvest two years ahead of schedule was a welcome blessing with the cherries and fig trees producing this year. It may not be a fabulous harvest that it will be in a few years, but for us we are thankful. I'll end up with two more 5-gallon buckets full at least before I call an end to the harvest for putting the fruits by, but there will be several more weeks of fresh eating before the season is done.

Nothing is impossible.

Sunday Stroke Survival: Action/Reaction

With the virus still active in places and being in the high risk category, I've put off the idea of having the baclofen replaced. It's still simmering on a back burner. It would have been off the stove entirely if it hadn't worked so well.  I've got to do something about the pain the spasticity is causing.

Sitting around and waiting has never been an option for me when there's another action I can take. I've decided to take another round of Botox. It's scheduled for September 11th. It's been three years since I've voluntarily injected the poison into my body. While I'm looking forward to it/not looking forward to it, it is some relief to the immobility and pain. At this point 45 days out of 90 is better than nothing because three muscle relaxers aren't touching it.

In talking to the nurse yesterday, I'll be back to the 300 units for injections into my muscles. Since there has been a break in the cycle of injections, we discussed whether my body would reset back to square one was possible. It is entirely possible that the lower unit dose will hold for the entire 90 days between injection cycles for pain control and improved mobility with PT like it did 7 years ago. Here's hoping.

Others have told me that they don't understand my pain with my spasticity. They have spastic muscles also, but it does not cause them pain while mine seems off the charts. While the contracted muscles causes a tightening sensation, it's not what technically causes my pain levels to shoot me into space. So, I have been evaluating where exactly the pain is and what causes the pain to increase so much. I have discovered there are several sources.

Although I consciously try to minimize the actions that intensifies the pain that only accounts for less than 50%.

1. Movement of the affected arm or leg while episodes of increased tightness is present. While the tightness or high tone is always present, sometimes are worse than others.
2. Cramping of already tight muscles. Not just rhythmic waves of cramping (tolerable) but the sharp, "Charlie horse" cramping that accompanies a movement the spastic muscle does not like (weight bearing, leg in full extension, or moving it an inch this way or that) . Once started, the Charlie horse cramp takes on a life of its own. It demands the arm or leg be held in a certain spot or the cramp increases in intensity. This cycle can last two hours, takes a break, and then starts up again.
3. Incident muscles and joints trapped between two spastic muscle groups. My trapezius, shoulder, and neck instantly come to mind. I recovered my shoulder muscles range of motion early after my first stroke. In spite of injuries, I still have that range of motion.  But its range of motion is limited by spastic bicep and pectoral muscles. So it wants and needs to move but can't. 
4. Psuedo involuntary movements of spastic muscles like with coughs and sneezes cause additional contractions of these muscles and cause pain. Even the simple acts of of blowing your nose or clearing your throat takes the contraction affecting these muscles.

Then there's my list of 'try not to do. that cause pain. Things like hitting a chair with my affected arm's funny bone, which is decidedly unfunny, causes a rippling effect into spastic muscles. The dead weight of carrying a spastic limb also causes its own level of pain. I try, when seated at the table, to keep my elbow supported on the table. The brunt of the weight of my arm is no longer carried by my shoulder. But with movement, like taking a drink, my arm will slip from it's perch causing a jarring pain in my shoulder and bicep. While walking when the spasticity isn't too bad, I can hook my thumb into the waistband of my pants to relax or help support the weight of my arm. All bets are off when the spasticity is very bad and my arm is drawn up into my chest. All six or seven lbs of dead weight rely on my shoulder to carry it. Don't think that's not too bad? Try carrying a half a gallon of milk around all the time and you'll see what I mean.

So it's back to Botox for me again. One step forward and two back. Sigh! It's like my mama used to say, "There will always be an again."

Nothing is impossible.

The Danger of Being Labeled Noncompliant

You hear quite a bit about noncompliant behavior on the news in regards to the demonstrations going on in the country right now. But I'm talking about being noncompliant in your health care decisions. Especially when it comes living post stroke. Maybe, you were one of the lucky ones who recovered 100% or very close to all of your sensation and/or function after your stroke, this isn't directed towards you, but at the other 85% who weren't as blessed like me.

It's been 8 years since my first stroke left me paralyzed on my right side. Now, whatever I did recover has been nullified by post stroke spasticity and contractures.. That's despite being compliant and doing my rehab exercises religiously twice a day to the best of my abilities. My body just worked against me.

What do I mean by noncompliant?

noncompliance

[ non-kuh m-plahy-uh ns ]

noun

failure or refusal to comply, as with a law, regulation, or term of a contract.

(www.dictionary.com)

When I was discharged from the TCU (technical care unit) after my stroke, I was given written exercises to do at home once or twice daily. This was an implied contract. I did and still do them to the best of my ability. I was told why I needed to do them towards my recovering from the limitations of my stroke. I could stop them when recovery was made. Have I recovered yet? No, so I still do them even after eight years.

Now being human, we expect a reward for doing something good, right? We expect

to keep strengthening muscle and memory until the movement is there again. So you don't recover what was lost in the optimum 30 days or even the golden 60 days, you switch gears to the long run. You are no longer running a short sprint race, but a much long distance run. A 10K or 20K? Nobody knows for sure. But you keep at it because one day something may click just right in your brain and function will be restored.  It's a lottery, a chance, a hope, or a dream goal to strive for. And, you are still compliant with the first contract upon discharge 8 years ago.

What's the sense in keeping on doing it, if I can't recover what is lost? Only you can decide when all hope of recovery is lost. If you join the noncompliant group you may still recover, but then you'll be at a loss because muscle mass has been depleted. There are cases of recovery twenty years after a stroke.

What happens when you give up and refuse to be compliant? The physical therapist makes a note in your chart that you are noncompliant. How important is this little note? It will follow you the rest of your days. 

Don't believe me? Think back to your high school 

grades. If you knew then that the "D" you got in history would show up every time someone asked for a transcript, even in your 50s and played a part whether you got a job or promotion, you would have tried harder, wouldn't you try to get at least a "C"?  Sounds silly? It happened to me. It didn't matter a hill of beans that there was issues with the instructor. In trying to explain why, only emphasized my inability to work with others.

Anytime in the future when you need services, it will pop up. Your insurance company also receives a copy of this note and decides not to pay for future treatments. Every doctor that gets a copy of your rehab notes will see it and decide you shouldn't be their patient. Having that little "noncompliant" note can have a huge impact.

Think that a label can't hurt? One doctor dropped my husband from his services and worse yet, labeled him as a drug seeker. Now, my husband's current doctors looked at the label and laughed, and knew it wasn't true. But when looking for another doctor to replace him was next to near impossible.  The label hurt our search. I ended up calling in a favor to get him seen by a new specialist. After listening to his side of the story, this doctor kept him as a patient. We battled this label with every new doctor for ten years before my husband died. A note of "noncompliance" may not be as extreme as this case, but they follow you for decades.

Just a word of warning. Try your best and keep trying. You never know who is watching. You may be tired of trying, angry at a broken system, or involved with current situations that cause you to reach the point of giving up. I understand. I'm there too. But I won't always be here. Things tomorrow may change.

Nothing is impossible.

Just a word of warning.

Sunday Stroke Survival: Balance and Picking Peaches

Yesterday was my #3 daughter's 36th birthday and today is the 32nd anniversary of my mother's death. So it's kind of a bittersweet kind of day.

Since my first stroke I get some rather intense vertigo looking up. It's better than when I first had my stroke. Then, I couldn't look up or down without getting thrown off balance even a six-inch deviation of looking away from midline brought on the intense tilt-a-wheel sensation along with nausea.

I retrained my middle ear and brain connection by doing head rolls (looking at all points of the clock face) while seated. I actually used a clock on the wall initially positioned six inches above my line of sight. Initially, just that slight movement brought on the dizziness, but I kept at it by doing this exercise several times a day. When it didn't feel like I would fall out of my chair, I moved the clock position to correspond to my height standing and worked the exercise again. While seated, I expanded the exercises by moving the clock six inched below my midline. Whenever I could do the exercises without setting off my vertigo, I'd move the clock another 6-12 inches.

It's taken quite a few years to get where I do not get that sensation at all while looking down. I do get some when I have been looking down for a while and suddenly looking to midline. But it's only a matter of closing my eyes for a few seconds to realign my sight. Unfortunately, I've not have the same success with looking up. My maximum of looking straight up is a foot. Any distance greater than that the vertigo returns in full force.

Here's my dilemma and possible solutions. The peaches are ripe on one of three peach trees. They have to be harvested which means I have to look up and pick them. The peaches that hang within eye level or lower are no problem, but that's less than a quarter of them. All the rest are above my one foot line of vision. Now even I won't climb a ladder without support. If it requires a ladder, I'll have Mel pick them, or let the squirrels and birds have  them.

If I had two functioning hands, I could grab a branch and pull it lower to harvest, but I don't.  If I didn't get so dizzy when I looked up to the point of falling, it would not be an issue but I do. The idea of falling under a peach tree, feet from anything to assist me standing up is not ideal. Especially when the mechanism of the fall is disorientating vertigo. The mulch under the tree is damp to several inches of slick chipped leaves and wood, rotten fruit, and ants galore. A combination sure to make up an unstable foot placement for rising.  Will this stop me? Y'all know me better than that.

I sat on the porch swing and pondered the situation.  I've read about this homesteader who thought no fruit is ready until it falls from the tree. He put several thick layers of mulch under his trees to cushion the fruit, somewhat, when it fell. He just picked up whatever fell from the trees. That's all fine and dandy if you wanting only fresh eating or have planted harder fruit like apple, oranges, or rambutans. But fruits like figs, berries, and peaches are delicate fruit. They'll bruise badly if allowed to drop.

It doesn't work if you want to preserve the harvest unless you have a whole orchards of single fruit trees. It will take 2 to 3 peaches skinned, and cut into slices to fill a pint jar, and a canner load (water bath) is 8 jars. Most small homesteads have less than 20 fruit trees total. Plus if you wait until the fruit falls from the tree, it's too soft to can or freeze, it's overripe by those standards. My grandfather had twelve living children. He planted a cherry tree in honor of their births. At maturity, these trees produced more cherries than a family of FOURTEEN could eat in a year.

So back to my problem. I could take a big stick with a hook on the end to pick the fruit. This way I could stand at a distance making it within my one foot height restriction. I still might try this. Have you every tried controlling a long stick with one hand? The farther the stick is away from the body the harder it is to control. Let alone with a single hand. Plus, the fruit would hit the ground causing an unusable bruising spot that would have to be cut out while processing.

From there, my thoughts traveled to a more elaborate method. If I could somehow weight the stick, thereby hooking the branch, the weight could drop the fruit down where I could pick it without having to look up. I just have to figure out what to use for a weight. Maybe I could tuck the stick under my affected arm and slowly push it through as the branch lowers. But then, I'll end up with the peaches in my face.

I know I'll figure out something to get some of the peaches harvested for the pantry. They aren't particularly sweet nor large, but they are definitely peachy this year. But they are ours and the first time more abundant than the squirrels and birds can eat. They'd make some excellent jam. I can still go down the road to E.D. Grier's orchard and buy a half bushel of gorgeous peaches for slicing and canning.

Any of y'all have any ideas of how I can pick my peaches? I still have cherries to pick in a few weeks and apples to follow.

Nothing is impossible.