Sunday, December 29, 2019

Sunday Stroke Survival: Touchy Feely- Stretching the Limits

I hope y'all had a fabulous Christmas and Santa brought you all you wanted. I pray y'all have a safe and blessed New Year.

Just out of the hospital this past summer, I had horrible balance. It was carry my cane everywhere or do the touchy feely thing with walls and furniture. A major part of the problem was I was never given PT in the hospital. I went from prone in bed or sitting in bed to discharged home. Let me tell you, standing up that first time without help was scary. I'd only been in bed for almost two whole weeks. I wobbled a bit as I commanded my legs to hold me
Playskoll Webbles
up. Webbles wobble, but they don't fall down, but people do. No I didn't fall. I may be impatient, but I'm not stupid.

The paperwork for discharge had been signed and home care instructions were issued.  I had waited two hours for the aide, and Mel and I were ready to go. I got to my feet and the bed alarm went off. The nurse rushed in, but I had to get dressed to go home.It was three steps to the commode. With the bathroom door opened, the nurse couldn't help me. I made it and plopped my hinny on the seat. I had Mel pass me my clothes and shoes. I got dressed.

Luckily the handicap rails were on the correct side for me. Have you noticed this problem? You got a 50:50 shot, right? For me, it 75:25 of the rail being on the correct side in any given handicapped bathroom. I'd choose wrong and the rail is on my right affected side which offers me no assistance. Pulling my pants up was a acrobat feat worth paying for, but I accomplished the task. Getting into my shoes was problematic, but they always are. My cane wasn't in sight. The staff had stowed it in this closet. As I was emerging out of the bathroom, my aide appeared. "Honey, I told you I'd help you."

Months passed. Where I once was walking inside the house with no assistance, I found I was having to touch or hold walls to keep my balance. Coming off the antipsychotic drug helped, but I was still having issues with balance. A reduction of the seizure med helped even more. I was only doing the touchy feely thing in wide open walking, with stairs, and any place that wasn't level. Physical therapy helped restore my confidence in my feet and legs. Eventually, I was able to come off the seizure meds entirely. Almost instantaneously, I was able to walk upright again and have my balance back. Almost entirely the need for that touchy feely instinct is gone.

She's carrying a leaf in her mouth. Goofy dog!
I still touch a piece of furniture or wall if I have to step over a household animal, or brace myself firmly against a tree when the 80+ lb Kassity comes barreling down the hill straight at me. Even a non impaired person would do that. She's all energy and forward momentum. She doesn't jump on me, but stops and leans on me to be talked to and petted. But even that would throw me off balance without my cane. Yes, I'm now back to walking without my cane outside.

Now, it was a question of strengthening. It's taken forever (just 4 months) for me to get three-quarters back to my old self. I've got to get that last quarter plus to be ready for spring planting and pruning five months away.

This week, I was out on the property picking up kindling for the wood stove. That's one of the chores I do around here. About 50 ft behind the house is where our ravine begins. In increments, this slope drops 600 ft down to the spring fed creek which borders our property on two sides. Well about
5 or 6 ft down, I see some choice dead fall branches. The slope was less than 45 degrees. I puzzled out a route around the small trees and bushes to get down there and get back up the slope. The branches would make quick work of the 38-gal trash can full of kindling I had to fill. So I went for it. I was stretching my limits for sure, but I was feeling good and froggy.

We use junk mail and tree twigs and branches to start our fires with. Waste not, want not. When it's been dry for a few days, I'll fill the (3) trash cans with this kindling. So anyhow, I traverse down this slope. I'm holding small, small knee high undergrowth and testing my footing with each step. I was under no illusion that the bush would stop me from sliding, but that little support bolstered my confidence to climb farther down.

I might note here that it's a 45 degree or greater angle slide down to the creek below (about 660 ft). I'll add, if I didn't hit a tree on the way down. I sure didn't want to do that - let alone the climb back up again. I may take chances, but I'm not stupid. Maybe a little insane, but definitely not stupid.

About half way down, I started a another pile of my candidates for a pile. I stuffed them under my affected arm now that I have limited control of my shoulder again. I climbed to where there was a pile of limbs I saw from the top. Looking up from where I started I felt a wave of self accomplishment, but the real trick was making it back up. I gathered branches and twigs and tossed them up the slope as far as I could... about a foot with all the undergrowth. I repeated this process until I had the pile licked. I made my way up to the pile and repeated the process until all branches and limbs were up on semi-flat ground at the top.

I leaned on the propane tank and broke my prize up into about 12" pieces. I brought enough from my jaunt down the slope to fill the trash can. I closed the lid and happily rolled the trash can into the barn. Later, it would be divided into 5-gallon buckets and brought into the house. Each 5-gal bucket will start 5 fires. The trashcan will be fill ten 5-gal buckets. That's a whole lotta warmth in three of those trash cans. I'll fill all the cans before the snow starts falling and keep filling them until it does. We shouldn't need much after that because the wood stove will be constantly going.

I was too pooped to pop afterwards. I sat in front of my computer playing mind games and watched a movie for four hours before it was time to cook dinner. Well not exactly cooked. I opened two pint jars of beef stew I'd canned earlier in the year, but I made biscuits. By this stretching my limits showed me that I'm getting back to my old self again. Now for my next testing of my limits... you'll have to wait and see.

Nothing is impossible.

Sunday, December 22, 2019

Sunday Stroke Survival: Living Post Stroke Just Got Easier!

I pray y'all have a Merry Christmas full of wanted gifts, surrounded by family, and love.

I won't keep you in suspense any longer. The scan was negative for mets! What my PCP wanted to see me about was thyroid replacement hormones since I once again have no thyroid gland. NO MORE CANCER!!!! Anyone who has the genetically altered genes from atomic bomb blast shouldn't have a thyroid gland.
Thank you God for giving my thyroid back to me,
BUT please do not heal this part of my body again!

Heal other parts of my body first.
Does this sound selfish? I apologize, but it's the truth. I guess He's healing me in order of occurrence. My first battle with cancer was cervical. Since I later had all those rusted pipes removed, I'm not sexually active, and at my age, He didn't see the sense in restoring those items. I'm praising Him loudly for this.😁

It's rifle season for deer hunters. So the barter agreement I made with the young man who delivers our firewood is in effect. For every deer he shoots, I'll help him clean, skin, and butcher it, and he'll give us three quarters of the meat from the kill and even the hide if I want to tan it. It's been many a year since I've tanned my own buckskin. He collects antlers and has very little need for the meat being a single guy. I'm not exactly going hunting for deer on our property and I'm not as mobile as I once was. He came last week and set up his game cameras and blind down by the creek.

I hope he gets a ten pointer, but I doubt it. Nnyus, our livestock guardian dog, chases off all other animals that aren't supposed to be on the property. If it doesn't belong to us, it's a predator to our livestock or gardens. He'll be here to man his blind at 6 AM every weekend during the season, but then again in GA, we can hunt our own property anytime for food regardless of the season, but we abide by the seasons guideline. We honestly need meat in our freezer. My mouth is drooling over the prospect of fresh venison and recipes keep popping into my head.

I guess I could stake out the orchard area on the other side of the property to hedge our bet some. I've seen fresh hoof prints and scat in the orchard. So I know they are visiting there. Nah, it's not worth the bruised shoulder and aggravating my spasticity in my right arm. There's something to be said against no pain, no gain when no or reducing pain is my number one goal these days. I wish him luck!

We're gearing up for Christmas, how about you? Without my children and grands around, I'm sort of 'Bah Humbug' this year. I haven't been home to see anyone in over a year. I won't be going home this year because I still can't drive yet. Another month to go since my six month mark of being seizure free.  It's been a double edged sword not being able to drive.

We didn't even break out the Christmas decorations. It's just one more thing to take out, put up, and take down. Even my little 1' tree was too much effort for either of us. So Christmas stayed packed up in the barn this year. I might bake some sugar cookies and decorate them. Although, neither of us like them very much. Maybe I'll make some Buckeyes, that's more to our tastes. As far as Christmas dinner goes. Pfft! No sense in making a huge amount of food for just us. Maybe a small beef roast or grill a couple of Ribeye steaks. Nothing elaborate just dinner for us two. I'd do TV dinners, if I had an oven. Wait, they make them microwaveable now, right? It's been decades since I've bought one. Are they still so blah tasting? The pictures on the box always look so great.

I should be celebrating, right? But I have the carry over effect from the high I-131 radiation...chronic fatigue. I keep telling myself I'll be better in January and I will. It's the high stress letdown too. I know all of this. I miss my husband. On the Christmases when my ex had the children, he'd take me to the local Chinese restaurant for something different to eat instead of turkey, ham, or roast beef. They were the only restaurant in town open on Christmas day...even McDonald's is closed. Mama and Daddy Chow's restaurant was always open. I cooked there when they first opened their doors and remained part of their family since 1977. My oldest daughter cut her teeth on their rib bones. But the restaurant closed its doors three years ago when Daddy Chow died at 90. Christmas is the time for nostalgia or is it melancholy, right?

Okay. Now I'm just rambling. 
Merry Christmas y'all! 

Nothing is impossible! 

Sunday, December 15, 2019

Sunday Stroke Survival: More AFO Craziness

June 1918 #3 AFO
It amazes me that some stroke survivors can go years without having major go on other than replacing a buckle or strap. My AFO is defunked yet again. This makes the going on 4th time I've had to replace mine in only seven years! This is on top of just replacing broken buckles and straps. I always think of myself as unique. But this is going on ridiculous.

Granted there were extenuating circumstances like the increasing spasticity, pressure sores, broken bones, and the like. Now, I've been casted yet again for another one. It seems every 18 months, I've got to get another one.

My #2 daughter was diagnosed with Juvenile Rheumatoid arthritis at 2 years old. So I was well versed in getting replacement braces and splints for her every time she hit a growth spurt (about every18 months). But I'm not growing anymore except for out, as in fluctuating weight not height.

I go through a questioning period with myself with AFO replacements. Am I just too active and hard on my AFO? What's the sense in getting a orthotic if it won't allow you to do things as normally as possible? I mean without it, I can't be upwardly mobile and walking. Isn't that what it's supposed to do and keep on doing it? Why am I having such trouble with getting one and keeping it functioning. This time, instead of causing a blood blister that was surgically removed decubitus taking weeks to heal, but it then later it formed new pressure sores on my heel and ankle.  Am I doing something unusual? Everyone tells me I'm doing what I should be doing. Maybe a bit extreme, but they all tell me that they wished half of their patients follow my example. This is as far as getting on with their lives not homesteading.

Am I too unique and quirky that I can't be fitted for more than a 18-month life span for this orthotics? Possibly. I break a strap or buckle loose every four months or so. They've even started putting three or more rivets in mine to take the strain I put on them. I mean what's the normal time frame for this to happen, I dunno. I only have what's happened to me. The orthotic's company really can't tell me. At least not the one here. Their tag line is "Empowering Human Potential." Why can't they figure this out? It's not rocket science just mechanics. But even going once a month for adjustment to my current AFO is not working. I wish there was another orthotics company closer than the 2 1/2 hour drive to Atlanta.

Last year's hope of getting out of this AFO permanently was sort of derailed. Between the smoking issue and the baclofen pump fiasco that pretty much ate up the year. So I'm faced with another new AFO. GRRR!

In other news...
I had the full body scan done. I called for the results and was given an appointment for next week. That's never a good thing. My PCP and I have a rule, you don't bother me and I won't bother you unless absolutely necessary. I'm not a self fulfilling prophecy type of person. I don't mourn loss until it's done and over with like when my husband was dying. I don't tend to worry at all. I tell my Daddy (God) and leave Him in control.

I'm not in self denial. I know why I'm going to see my PCP for the results. The cancer is not gone. My only question is where and what course of treatment options I have. I'll decide, after praying, just what choice I chose. I may chose to do not to do anything. I'm honestly tired of fighting. Don't get me wrong. I love my life even such as it is living post stroke. The ultimate choice is mine.

Nothing is impossible.

Sunday, December 8, 2019

Getting on with Life!

Once again I'm cancer free for the time being. After a month of glowing in the dark, I can be around people and animals again. I have a whole body CT next week to find out whether it has spread. So technically, I'm not out of the woods yet. This makes the third time I've had my throat cut. Twice because of cancer and once by a rapist. I never want to go through that again.

To celebrate this week, I'm going to paint the wood for the new quail hutches. Actually they are not new. They were the old outdoor rabbit hutches. I started dismantling them before my surgery and left the remainder of the quad-plex of rabbit hutches that were against one side of the house for Mel to finish.

While I spent so much time waiting on my cancer surgery (since May), I started research raising quail for our homestead for several reasons. Quail is fairly lean and all dark meat unlike chicken and other poultry. We are huge dark meat fans here. A 6-8oz bird once
dressed and cooked provides one serving of 3 to 4 ounces of meat. The perfect serving size. They are small and easy to butcher one-handed.

Quail eggs provide extra health benefits. Chock full of vitamin B for nerve health and promotes a healthy gut. Vitamin D and phosphor for bone growth and strength, and boosts immunities. Vitamin A for boosting immunities. Vitamin K to promote clotting (not so good for stroke survivors), but this vitamin also helps with calcium absorbancy. The yolks contain luthein and zeaksantin for your retinas, it's a little bit lower than carrots. The eggs help stabilize cholesterol numbers. They contain choline which improves the memory function in the brain.

For the same space it took to raise four rabbits, I can raise 288 quail! Not that I plan to raise that many at once. Quail are fully grown and will start laying eggs in as little as 6 to7 weeks old instead of 6 to 7 months for chickens. Granted it takes 3 quail eggs to make 1 large chicken egg, but they make better economic sense. I'll be starting with twenty-five birds and hatch out more until we have about, at most, 100 birds to sell, breed, or eat.

My PT was put on hold for the past month. I'm looking forward to that starting back up later this month. My left arm strength was increased to where I could lift a thirty pound bag of cat food with little or no trouble. I was even more stable walking again. I didn't feel like I had to touch furniture as I walked by to keep my balance. I could walk down the ramps and walk into the bunny/chicken hoop barn again without the use of my cane. My stamina was increasing almost to the point of before my two-week hospitalization in mid summer. I'm hoping to get more stronger and have even greater balance by the end of the year with my return to PT.

With the sloped terrain on our property, my steps per day get an extra punch. Even walking on the semi flat 1/4 acre part of the property is still a fairly good chunks of steps each day as I tend to the animals (not to mention bending and lifting), feeding, watering and grooming. Raking and turning the compost in place deep litter barn straw. Picking up kindling (sticks and branches) for the wood stove. Carrying splits of wood inside to burn in the wood stove.  Added to my PT/OT exercises twice a day (Yes, I still do them to the best of my ability), I get quite a work out. I don't need to pay for no stinking gym membership.

 I easily hit my daily step goal of 25k-50k.  I had even thought of going back to my previous daily goal of 75k-100k steps. It'll be easier to do when Mel starts her chicken farm operation on the lower 1/4 acre orchard terraces. The plan includes concrete block stairs for easier access. For now, I use the yard tractor to get below the first tier, because the sloped access is too steep for me to traverse safely. I'd really hate falling and rolling down that twenty-foot slope, trying to get up at the bottom, and making my way back up the terraced orchard levels.

It's the stuff of nightmares. One every impaired person fears. Each tier is 14' wide and drops 7' on each level except the 8' wide track which allows tractor or truck access on either side that slopes downward. We designed it this way keeping in mind that as the dwarf trees grew, they'd have ample light and space for ladders and half bushel baskets. On the two lowest tiers, we've planted pecan and walnut trees. This is also where we grow orchard grass/hay for our livestock. Currently, we only have (2 each) the nut trees, apple, cherry, plum, planted. Our trellised raspberry, grapes, and blueberries take up most of the first 75' upper tier. With fig and peach trees going in this year. There's still about thirty feet on each tier left unplanted. This is where Mel plans to put her chicken operation.

I want to try growing upland rice in a  10'x10' patch this spring. Just a trial patch as an experiment and for seed for a larger patch the following year. If this is successful, it'll be another item I can check off my self sustainable check list. We love our rice. So I've spent the past month researching and planning. I couldn't do much else. I know from experience, when battling cancer, the depression and what-ifs can really bring me down. This makes my fifth time battling this.

The key is planning what to do next after the battle is over and you've won. There's time enough to worry/pray/cry about inevitable outcomes if the CT shows mets. If I have to side step from the path because of additional surgeries or treatments so be it. I'll still have a plan for when I win this battle and I plan on winning. The alternative is that cancer kills me, but I'll still win because I'll be where I ultimately want to be too.

Nothing is impossible.

Sunday, December 1, 2019

Sunday Stroke Survival: Take Time to Enjoy Life's Blessings!

After over seven years of living post stroke, I've found the preciousness of the small stuff is a blessing to be enjoyed.

What blessings greeted me yesterday morning?
  • I woke up refreshed after a good night's rest. My pain level was about only a 5 out of 10. 
  • I was able to put my AFO correctly and get up from my bed by myself.
  • I was able to relieved myself without having having to change a soaked diaper.
  • I was able to make a pot of my favorite Earl Grey tea and carry a cup out to watch the sunrise over the ridge.
  • I had a meaningful chat with my Father and plan my day.
  • I was able to shower and bathe myself.
  • I was able to change my night clothes for day wear. 
  • I was able to scrub my face, run a comb through my hair, and brush my teeth.
Sound simplistic? Maybe. But a few short months ago, I couldn't do any of those things so they are blessings! In fact, I was quite literally dead. But, here I am drawing air into my lungs and my heart keeps beating such as it does. Honestly, a teeny, tiny piece of me wishes it was not so, but have breath-will live my time to the fullest as God intended. These are victories and blessings rolled into one!

Later in the day, my blessings were:
  • Made myself breakfast and cleaned the dishes afterwards.
  • I ground the sprouted and dried wheat berries into 5 lb of flour for the week's bread. Ours is not an electric grain mill, but a hand cranked one.
  • Fed and watered the animals both inside and out, and gave each the attention they deserve.
  • I gathered the eggs that the chickens had laid since the afternoon before.
  • I managed to blow out and comb one angora rabbit. That's up from only doing half a rabbit a day, but not as good as before my surgeries of three rabbits a day. Oops! I slipped in a comparison. Naughty, naughty!

I focus these blessings throughout the day as I plow. I'll be met with more blessings and failed attempts.It's the little things I know so many stroke survivor can't say that. This too is my blessing that I'll stick in my pocket for when frustration points hit.

You know frustration points are going to hit because you are relearning or learning to do whatever. Frustration causes you to doubt your recovery, but most of all doubt yourself. Before long. you are kicking yourself while you're down. Never a good thing. I take a moment and remember all my blessings so far in the day. I stay away from thoughts that will drag me farther into despair like comparing my life now and before my strokes. That life is over. I've started my life over in this new reality of the present.

Even on a "can't do anything" day where I can't even move to get out of bed by myself, I'll look out of my bedroom window. The sun will rise, the birds will call and sing to each other. Now with Autumn, the maples, oaks and poplars are ablaze with colorful leaves. I can be thankful for these little things too. Eventually my older arthritic joints will loosen and I'll be able to get up and start the other things most people take for granted.

I take nothing for granted. You can't do anything if you are dead and I was before the doctors managed to bring me back. Now, there's a comparison I'll gladly make and count it as a blessing too. I know you've heard, "Any day above ground is a good one." Your circumstances may not be your doing and you cannot change it right now. But, just as important is the quality of that day. That is entirely up to you. It is your choice.

Nothing is impossible.

Sunday, November 3, 2019

Sunday Stroke Survival: Two Weeks in Pain and No Walking

For a week, every step I took was painful. Yes, another pressure sore was forming on my AFO clad foot. It's been two years since the last one and I thought I was done. But no, it starts with the swelling of the foot as the blister forms under my protective callus. The basic treatment is stay off it, elevation, and icing the spot down. I know the routine by now after having eight decubitius ulcers form in the same place over the last seven years.

Usually at most, the time from red soreness to rupture or goes away is two days, but not time. This time it went from thumb tack pain to twisting knife pain levels. Every step had me audibly crying out in pain. This pressure sore was different. So after a week of this, I called my foot doctor. Her receptionist got me an appointment the next day. She's really good about doing that. Like when I had three stress fractures on the very same foot, it was that afternoon.

My podiatrist is also a medical doctor, not all of them are. She knows if I come in because of a pressure sore something is definitely wrong because usually I treat myself. I'm very experienced and trained at wound care. She asked me what was going on and I told her. "Well, let me take a look."

She told me she was going to scrape the callus off so she could have a better look and I agreed. She began scraping with the scalpel. Every once and a while she'd look up and ask me if I was okay, and then she'd continue. "No fluid, just dried, clotted blood, Here let me show you." She pulled out her phone and took a picture. She held it up for me to see. She applied the Amerigel and bandaged it up. It was amazing. I put my sock, AFO, and my shoe on. I gingerly took a step and waited for the pain to shoot through my foot, but there was none.

It wasn't until later that I realized she must have deadened the area because the pain came back. I went looking for my tube of Amerigel and couldn't find it. I had used up the little bit that was left last time. Of course it being late Friday night, I couldn't get any until Monday. No pharmacy in town (3 of them) had it either. Apparently, nobody in this town self cares their pressure sores. So I spent Friday night, Saturday, Sunday, through half of Monday hobbling around on my sore foot. I'm still staying off it as much as I can, but a body's got to eliminate itself. I mean no one can do that for you, right?

As a result, the scraped area became a bleeding raw spot with a renewed spongy spot in the center. It's about the size of a half a dollar coin, but it's enough to make me miserable. I feel like I can't win because of losing. I can't walk without my AFO, but my AFO is causing my pressure sore to be worse by not being able to shift my foot to a more comfortable position. I'm feeling useless and going stir crazy. I know this will heal in time off my feet. But I'm too active of a person to like it much.

Before I forget, I'm going to be MIA for the next month. I'm finally having my "thyroid" out and radiation treatment.

Nothing is impossible.

Sunday, October 27, 2019

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, October 20, 2019

Sunday Stroke Survival: Time to Flip the Wardrobe

With the cooler days and nights, it's time to flip the wardrobe. Gone are the easy days of T-shirts and shorts which comprises the bulk of my dressing options for these north Georgia foothills. They are exchanged for sweaters, sweatshirts, and long pants.

This year in thinking of this change, I'm facing a new complication. Adult diapers, more exactly changing them. It's more complicated than with shorts which slide off and on easily over my AFO and shoes. With long pants, it mean taking off my shoes, sliding my pants off, changing my pull up, and repeating the process in reverse before leaving the bathroom. I'm basically getting halfway undressed and redressing every time I do this. The few times I've done this in the spring and summer months showed me it's going to be a long, hard winter. Sure you can rip the sides to get out of them easy enough to do with two functioning hands, but more difficult with only one. It still doesn't alleviate having to undress to put on the clean one.

I've been researching patterns to make durable options like I did with the pads.  Unlike the pads where I could trace the disposable pad I liked the best, full "panties" are different and I'd need a pattern that don't come cheap.  Then comes the problem of size. While regular underwear patterns patterns go by waist size, while my normal waist size is is spot on a size 7, there are extra seam allowances for the snapping portions. several small elastic placements at the waist to hold up a wet diaper. It's not like sewing regular panties because of the absorbent padding makes for extra bulk. It'll take a lot of elastic work to accomplish.

 Sewing elastic onto fabric with two functioning hands is easy. I've just got to figure out a way to do it with one hand. It may be as simple as using a dozen pins the maintain the stretch while sewing and a loop at the back of the sewing machine to hold the fabric straight while sewing or a  lot more complicated. I honestly haven't tried to do anything but flat, straight stitches yet.

I've already know how to attach the snaps through trial and errors in making my own pads. So that won't be a problem. That was a challenge and a half when I was trying to figure out how to do it.

Currently, I'm roughly going through a case of disposable diapers in a month. That's 54 of them to the tune of $22.50. That's about 12 per week. At $0.41 a piece, it's a decent price, but I'm trying for the ease of changing them without having to undress and redress each time. The cost difference will eventually save me money in the long run. The same was true for the chucks pads I use to protect the mattress or even the pads. Yes, I could buy these ready made, but they are cost prohibitive or it would take longer to reach a break even point.

But then on the other hand rethinking this, I'd go through acrobatic feats of wonder trying to do up all the snaps or Velcro with each change. It's a no win scenario for 6 months out of a year all to keep from undressing during the cold parts of fall and winter. I guess I grin and literally bare it, quite literally, until I get my somewhat bladder control back. Sigh!  This too is living post stroke.

Nothing is impossible.

Sunday, October 6, 2019

Sunday Stroke Survival: Incontinence? Nope. It's Worse!

When you talk about incontinence, you mainly think about the bladder. When you talk about bowel incontinence, it's something else entirely. I don't have this problem except in cases of diarrhea. But even the "norms" have a control issue with this, don't they? During these times, even they wish they had diapers to save wear and tear of their clothes, and embarrassment of accidents. But I'm already in them.

I had a incident this past weekend that caused me some real concern. Of course it happened over the weekend, it's an addendum to the old Murphy's Law. If something happens when you need your PCP, it'll happen on a weekend, holiday, or night when his/her office is closed. Then, you you have to weigh your options under is it bad enough to warrant an ER visit.

Now being a former emergency medical professional, I weigh this differently than most people. It's more of a question of "will it kill me if I wait until Monday?" I don't use the ER frivolously at any time after normal business hours. Things like a cut that needs stitches to close with bleeding I can't control by other means, broken bones besides fingers and toes, or true medical emergencies like heart attack or a stroke...all of these require emergency services.

 (this is gross, but true)
The event of the weekend just barely fell in both category. I decided to wait until Monday. As is my usual habit, my bowels decided to do it's weekly or biweekly purge...slight constipation (hard stone like bowel movement), followed by a couple of normal movements, and ending with a couple of really loose movements. This is not true diarrhea, but diarrhea type movements as a way to finish purging my bowels.

Except this time was different. By the time I reached by two loose stool movements there was blood tinged mucous. The cramping (I now feel it just under my rib cage in my back) didn't stop. This was highly unusual. After I walked the bathroom and sit on the commode, the cramping got so bad I vagaled. (profuse sweating, dizziness, low BP, hot flash, a high heart rate). Instead of the expected bowel movement I passed huge bloody mucous blobs. The bloody parts were bright red which told me it was a rectal vein.

This continued through the night. By Saturday, I couldn't pass gas without spewing blood. If it got any worse, I'd go to the ER otherwise I'd wait until Monday to see my PCP. By Saturday evening, the mucousy blood movements stopped, but were replaced by blood clots. So whatever ruptured inside was trying to heal in spite of my blood thinners. When you are on blood thinners, you can expect to bleed more heavily than normal. I was thinking that was the case here.

By Sunday evening, I had two incidents of passing clots and it finally stopped. All during this time I ate and drank normally. I applied witch hazel patches to my anal area to shrink whatever was it was causing the bleeding. So, it wasn't like I wasn't doing nothing. At no time did the bleeding turn darker, like an upper GI bleed, nor more profuse other than I described.

Caveat here, I am a trained emergency medical professional. I do know when the abnormal turns critical and warrants further intervention of others. If you are not, by all means, go to the ER.At times, the thought of going through my mind and I would have if the symptoms gotten worse than what I experienced, or hadn't slowed, or if the amount of blood was greater than a monthly menstrual cycle. I would definitely carried my unhappy hinny to the hospital, I'm not stupid. I just don't panic in "emergency" type situations. I observe and evaluate first as I was taught.

I know from experience that the ER would have done a wait and observe the progress with a possible admission for the weekend. With a cleansing ritual to prepare for a scope or colonoscopy for the regular work week. Been there, done that, and don't want to go through that again. The only conclusion the internist could make after that fact was that the area in question was healed or healing on it's own and ordered a stool softener for a week. I've got plenty of stool softeners here after the surgeries of spring and summer if I need it.

By using prior knowledge, I saved myself a ER visit, possible admission, a colonoscopy and a bunch sheer aggravation of wasted money. But yes, I will appraise my PCP about this when I see him next week.

Nothing is impossible.

Sunday, September 29, 2019

Sunday Stroke Survival: Incontinence Revisited

Since my first Baclofen pump surgery in April, the marginal bladder control I had, since my first stroke, is gone. I used to feel the urge to go and make to the bathroom in time except for a little dribble. To handle this, I wore a pad. It worked well for almost 6 years.

To be honest, I had stress incontinence long before my stroke, but this was corrected by a sling  placement during the surgery to remove five tumors from my abdomen in 2006. The sling ruptured in 2013. My signal time to go and leakage dropped to 1 minute...about the time I could make it to the bathroom and not have an accident. The signal cue was delayed by my loosing sensory feeling in my peritoneal area with my first stroke. I now take my cues from my belly button. At the time, I was on Lasix also which only compounded the problem.

Since the trauma to the nerves in my lower spine during the baclofen pump placement, that cue of have to go to bathroom dropped to 3 seconds. I could barely stand up and get my legs straight when the flood started. It was no longer a trickle, but bladder emptying gushes of urine with every step with very little control. I made the decision to go back into diapers, or pull ups. Immediately I noticed a huge difference in price for a month's worth. The pull ups were cheaper than the Always pads I was buying. I was honestly surprised by this. The gushes being handled had the benefit of no more clothing changes, 3 or 4 showers daily, embarrassing accidents, and mental stress relief.

Now I know all about kegel exercises, timed bladder emptying, etc. I've worked on it all since April trying to get control of my bladder to no avail. With the pump removal, the trauma to those sensory nerves has doubled. I no longer have that cue at my belly button. Even with timed bladder emptying and fluid restriction, a gush can happen within 30 minutes after fully and conscientiously emptying my bladder. There is no controlling it or reteaching my bladder right now. So adult diapers are a necessity. I can accept that. Have I a choice, no. At least I've got my bowel control back after a month long battle with diarrhea (caused by a low fiber diet and meds they had me on) after my hospital stay.

So I've currently given up on my bladder control issues for the time being. I've got bigger irons in the fire that demand my immediate attention. Knowing from previous spinal traumas, it will take four to six months for the trauma to heal. By then, God willing, I'll have a new pump implanted setting the clock back again. I'm in no hurry. You can't fight your body's healing time. Every body heals differently and I know mine. I'm the Queen of Abby Normal, I take the maximum time to heal, and then some. I look at the time to heal as guidelines. Some heal faster and some heal slower, I'm a snail. I always have been since I hit forty and became an insulin dependent diabetic. Now that the diabetes is no more, I'm still a slow healer. Go figure.

I know I've said spinal trauma several times in this post. To me, due to my training, trauma is damage or shock to my spine. An intrusion or insult of a foreign substance, that causes pain and swelling displacing a normal condition. A catheter was fed from my lower spine to my cervical spine. For my height, that's almost a foot and a half.  The incision point, the insertion of the catheter, in the implantation they had oi chip a piece of my spine to anchor the leads, and stitches to hold everything in place. Plus, the catheter puts pressure along the spinal cord. All of that was traumatizing my spine and spinal cord.

Now with the pull ups, I can get up, and do within reason without having urine running down my legs by the time I get to the bathroom. I'm still in the recovering my stamina from my July stint in the hospital. I'm still not recovered it all yet. I may never will, but that remains to be seen. Such is life in an older body. Everyday, I push my boundaries. Some days I bounce back, and others I need a couple of days to bounce back. I've got until spring planting season to get it back. So I'll keep working at it.

Nothing is impossible.

Sunday, September 22, 2019

Sunday Stroke Survival: Phone Scams/Emails SPAM Rant

Just because I'm older doesn't mean I'm stupid! This has nothing to do with living post stroke only real life.

Since the loss of my phone and my inability to get another working phone, I've been using Mel's phone. I've been answering a lot of "unknown caller" calls. They are usually one of my doctors or family and friends with the usual robot call.

One particular phone call had me rattled this week. They knew my name, address, and was calling for me on Mel's phone. They were calling to inquire about a missing $1,000 check. As it so happens, I was actually involved in a check dispute at the time for that exact amount. But, when they starting asking questions like SS# and date of my birth, the alarm bells went off in my head. They only referred to the other party as "client" I knew something was fishy. She said in an Indian accented English, there was a form I needed to sign, and did I have a fax # to send it to. I answered no, but they had my mailing address. Just mail it to me. It's been two weeks and no form. And now a month later, still no form in my mail box.

To top it off, I called the other party and several others. My roommate even got the call using her name. They also have received phone calls. The paranoid gene kicked off in my brain (it could have been the coming off my anti-psychotic med too). Is someone watching me for some unknown reason? Am I being targeted? Or has someone found my old phone and using that information? Was I really going nuts, or reverting to my past experience as a law enforcement officer? I loved my stint in Bunco and I was good at it. I checked with my friends and one of them called the number left on his voice mail and called them back. The recording said they had regular business hours and to leave a message. In contacting Verizon, I found the phone had not been powered up/charged and turned on, or wasn't pinging the location. That said "Scam Alert"  to me. If I had not been for coincidental factors I would have known it was a scam sooner.

But, have you noticed the recent influx of email scams/spams? With titles like "collaboration blog" or just requests to write a blog touting their product? I've worked long and hard on this Blogspot website and been posting since 1999 and this particular site since 2011. I've got the following, the hits (over half a million), and the comments. I know Blogspot sells this info. They have to make money somehow and it costs big money to do this for free.

I treat every email as a link to a virus, worm, hack, or other such nonsense. I rarely click on links unless they come from really trusted friends who think the same way I do and recognize the site I'm going to, like YouTube. My computer and other I send messages to are too important to me. It's a shame that hackers make such nasty things to ruin such a big part of our lives. But those are the times we live in.

I usually just read and delete them. But, this email arrived the day after the phone scam thing, and I had a short-lived hope...

Hi Dear,
It is so nice to have this chance to enjoy reading your blog.
Here is our website: https://www.custom-necklace .com/

We sincerely invite you to cooperate with us for a post:
*You write an 300-500 words article with links about our products and post it on your blog or social website for permanent.

Waiting for your positive reply.
Best Regards

I went and looked because I was thinking it may have some handicap closures, etc. Don't bother. They don't. Disappointed, I fired back this...


I stopped by your website. Beautiful jewelry.

You obviously have not read my blog. My blog contains articles that pertain to stroke and brain injury survivors for the last seven years. AND, before that it was my author's site.

Unless you have items that can be fastened with one functioning hand your bracelets and necklaces don't appear to function that way. Try it yourself, and then you'll see the some challenges we face daily.

Impressed by my stats, which is where I suspect you got my email from, don't be. I'd switch bodies with you anytime. I lost two careers that I loved with my strokes. My publishing and as an ordained minister.

I know you are just doing your job.
Usually, I'd not bother. Ellen caught me at a weak moment. I haven't heard back from Ellen. If you knew me, I'm clearly visible in my posts, nobody calls me "Dear" unless you're over 90 years old and then, you call everyone you don't know dear. Even then you are stretching it. But I'll comply, sort of with this and it's not going to be pretty. My horns are showing...

All necklaces have lobster clasp or "C" clasps on all necklaces
Not user friendly for a one handed person
I sent this to Ellen after this post appeared.
You wanted 300-500 words. You got only new 222 words. Actually, with the publication of our email conversations it hits the mark, two pieces of jewelry shown and a visit to your website, shows your website addy, it's permanent, and published on my blog. Are you happy now? Have a blessed day.
I warned you my horns were showing. So scammers, hackers, and cold calling marketers beware. I got your number.  
Nothing is impossible.

Sunday, September 15, 2019

Sunday Stroke Survival: Aging

1971 Shasta camper
Getting off the subject of my ill health woes. I was watching a YouTube video of revamping a vintage camper into a tiny house. Yes, I'm still crazy about tiny houses. The camper in question was a 1971 pull behind "RV." It struck my funny bone. Vintage?! I was getting ready to graduate high school when this camper was built.

It got me thinking about aging. If the 1970s was vintage, what would I be called at my age? I'm certainly not antique because I'd have to be over 100 years old. I'm old, but not that old although I do feel like I'm close to it right now. Ancient would be over 1,000 years old. I definitely don't fit in this category. What's in between vintage and antique?

That set me searching. There isn't one. If you know of one, please let me know. I love the word SEXagenarian. It covers the ages between the 60s and 70s. So I can use it for a few more years. So I guess I'm mid-line vintage. That's not too bad, I guess.😕

When I think vintage, I think sock hops, drive-in diners, and saddle shoes. Today, it's Afros out to there, bell bottom jeans, and heavy eye makeup of my high school years. My younger sisters even had old train cases full of make up. Me not so much. Even back then, I wasn't a fru-fru girl. A little bit of blusher, mascara and maybe a pencil eyeliner. 
In case you didn't know, a train case was a small suitcase carry on that your parents or grandparents used to carry essentials in when traveling. Smaller than a carry-on. My sisters had it full of different colored mascaras, eyeliners, lipsticks, eye shadows, etc. to achieve just the right look. It took them hours, reapplying during the day, to put it all on, keep it on, and take it off. The most make up I ever wore was my wedding day (the first one). My sisters made us appointments at Merle Norman's. They offered free make up jobs in the hopes that you'd buy all their products. I have to admit I looked darn good in the photographs, but I couldn't wait until I could wash it all off.

I guess that's why, until my strokes seven years ago, most people pegged my age at least ten years younger. Besides being Asian, I let my skin breathe for most of my life. Your skin is the largest organ. You need to protect it. I've never even been tempted to go to a tanning place, but wore sunscreen, and tanned naturally through outside activities. By the end of summer, I was a golden brown and usually still am. Not this year though, I've been inside too much. sigh! A tiny medical reference.

I'm vintage and loving it! I'm thinking of finely, aged wines and cars. Classical and not as crude as I once was. Not a beauty queen, but the girl next door pretty. Well, maybe if I take the time to brush my hair and apply some make up. I prefer infamous to fame. I'm the type of of person who gets behind you and pushes you to be the best you can be, and applaud you the loudest when you get there. I'm just Jo. I'm aging not so gracefully, but what you see is what you get. Now, I'm too vintage to care what you think. But then again, I've always felt that way even in high school.

I still believe "Nothing is impossible." Ir keeps me going and striving to be whatever I want to be. No matter how old I am or what it's called.

Sunday, September 8, 2019

Sunday Stroke Survival: Ugh! My Doctor Rounds

I've spent the last several weeks doing my regular doctor rounds. As I've said previously here, it's important to have all your doctors (your heealth care team) on the same page.

What happened at Emory a month ago caused a major hiccup in my health care plan and numerous missed appointments. They had to be updated. I've had medicine adjusted, discontinued and added. Who wants drug interactions thrown into the mix? A seizure and an undignosed head injury were just the tip of the iceberg in the realm of neurosurgery and neurology that they needed to know. But it effects all my other doctors too. My heart stopping was in the realm of my cardiologist, but my PCP needed to know this too. In fact, my PCP needed to know ALL of it because he's my ring leader and clearing house for everything medical. Even my podiatrist got updated because now with the low heart rates and blood pressure, I have poor circulation to my feet on top of my neuropathy in my feet. A double whammy for possible complication to pressure sores caused by my AFO.

They are my team and I'm at the center for the best possible outcome for me. This is not only deals with the doctors but their nurses as well. By everyone being on the same page, they can make informed decisions. For example, I really need to have my cancerous tumor in my thyroid area removed. But I have to heal up from my baclofen pump removal and the infection that started it all. This means contact with my neurosurgeon through my PCP or directly. My neurologist comes into play at this point because he's not only juggling my post strokes care, the fact I no longer have a baclofen pump, and the spasticity has returned with a vengeance, but also my seizure.  I have them under control and stable before I can even think about having surgery. Then, the cardiologist into play because my heart stopped. I've also got  three out of four leaky valves in my heart, unstable angina, been in heart failure, paradoxical blood pressures inside my heart vs my whole body, and worsen plaque in my carotids. It takes the whole team weighing in on a surgery and follow up treatments for my cancer.

While I agree with this team approach, I just want the cancer removed and go on with my life. I feel like Damocles' sword is hanging over my head. Can you blame me?

So the timeline looks like this. End of May they found the tumor.The beginning of July, I was preparing for this cancer surgery. It's September now. Neurology- I have to be clear and stabilized on seizure meds (at least a month).  Plus be off my blood thinners for at least 7 days which increases my likilihood of having yet another stroke by 75%.
Neurosurgeon- At least 8 weeks after pump removal. I'm now on week 7. Another week to go.
Cardiology- Have to be off blood thinners for 7 days and determine how to keep my heart beating during surgery since I can't take my atenenol nor my omega3 which reduces my cholesterol (at least two weeks). Will being off my blood thinner and omega 3 increase the likelihood of the plaque breaking loose thereby having another stroke or my lungs causing further complications.

It's complicated. So maybe by the beginning of October, I can be cleared for the cancer removal. I'm still hoping it hasn't spread by then. It's the luck of the Irish dampened by Murphy's Law.

Nothing is impossible.