Sunday, January 10, 2021

Sunday Stroke Survival: One Surgery Down and One to Go

My T-CAR procedure is done. The gauze was not as heavily spotted with junk (clots and plaque) as it was with my left carotid. But then, my right carotid was only at 80% blocked where the left was 98%. The stents will hold the vessels open for a few more years and lessen my chances of having another stroke (maybe). A normal blood flow feeding my brain with oxygen is always a good thing.  Maybe the renewed blood to my brain will combat the CRAFT (can't remember a friggin' thing) I've been experiencing, but I doubt it. LOL I think it has more to do with my strokes and age. But having a normal blood flow feeding my brain with oxygen can't hurt, right? I figure it took over 60 years for the arteries to get that clogged, so I'll be long dead before I'll need it again.

Up next is another biopsy on the mass in my neck. The scan showed the thyroid was gone, but what's the new mass? That's the big question. Is it more cancer? I'll find out next week. All I know is I'm fed up with cancer and having my throat cut. My Mom had three surgeries for her cancer and the scar tissue was horrendous. This will make the fifth time for me. My surgeon is not relishing the idea. He had a difficult enough time the last time. He spent more time removing the scar tissue than removing the mass. It also takes me longer to heal by weeks. But in a way, I'm thankful this is another form of cancer that is not as aggressive as the first one I had nor killed my Mom. Well, I'm not borrowing trouble (much), I'll wait for the biopsy results.

The bright point is I'll meet my deductible and maximum out of pocket expense for 2021 in January. So any further doctors and treatments are paid in full for the rest of the year with these two procedures. I'm praying for the extra $1,400 stimulus package to offset this medical expenditure, or they'll stand in line for a monthly payout.  I love my Medicare and my BCBS/Anthem supplement through the college. πŸ’“πŸ’“πŸ’“Each year, I experience no medi-gap troubles on prescriptions and my last quarter, my drugs are free. It's a very nice Christmas bonus each year.

Living post stroke and with the medical problems I do have ain't cheap. There's drugs, therapies, doctors, surgeries, laboratory fees, various orthotic devices, and the list goes on and on especially if you're me. I have multiple ( I don't know if this is the right word but...) complications due to my post stroke life like spasticity, tremors, and PBA which adds to the list. I mean six AFOs in almost nine years to the tune of $1500 each plus special shoes yearly because my spasticity alters the way I walk and my balance. And, the maintenance of devices new pads on canes, walker, shower chair, and bedside commode, I had to replace the tires on my wheel chair due to dry rot, resoling my shoes because I wear out the ones on my shoes in six months, and straps and buckles on my AFO because insurances doesn't pay for them and they break. All chip away at spendable cash in my tight budget.

Wohoo! I got a COLA increase this year. It covers the increase in my BCBS coverage THANKS BE TO GOD! I've been luckier than most in this respect. I have a friend who is also receiving survivor benefits, but her supplement are piece mealed between A/B, D &F on separate supplement policies and it leaves her with twice the cost as my one supplement. And, she has a deductible and hits the medi-gap on her prescriptions in December. If she gets an increase in her supplement, she can't pay her power bill and/or groceries for the month. I help her out when I can, but I'm almost in the same boat.  That's the one big plus about growing your own is that we can share if we need to. I'm counting my blessings for my beloved who is still looking after me.

Nothing is impossible.

Sunday, January 3, 2021

Sunday Stroke Survival: Just What Are You Staring At?

Recently, Rebecca Dutton over at Home after a Stroke posted about being self conscious about her adaptive steps she has to take to just do and how it doesn't diminish her successes she's made in recovery post two brain stem strokes.  Stroke survivors have enough to be concerned with to have to deal with an ego jarring issue like this undermining them. This struck a cord with me and prompted this post. I thought I'd add my two cents worth on the subject. 

 In living post stroke, you run into all sorts of folks. You are almost paranoid that everyone is looking or staring at you. How do you know someone is staring at you? When you make eye contact with them they'll quickly look away. But then, there are folks that will hold the stare until you look away. The latter is just blatantly rude! I've run into a lot of them in the almost nine years since my first stroke left me with aphasia, PBA, paralysis, and spasticity.

First let me say that nobody depreciates me, or makes me feel less than me, except me. Many people have tried, but they run into my Taurean stubborn streak and they'll lose. For the first couple of decades of my life, I was rude, crude and socially unacceptable. I called a spade a spade and couldn't be swayed. When backed into a corner, I came out punching (both figuratively and literally). I've tempered with ages somewhat. Now, it's mostly mental snide comments, comebacks and other comments, but if I get really irritated or threatened the restraint is cast off. My mouth gets me into the worst trouble.πŸ˜„

Living post stroke when you haven't recovered all your abilities, there is obviously something wrong with you to even the casual observers. If the staring goes on very long, you get irritated. Didn't their mothers teach them not to stare at others. It's impolite. All sorts of snide and snippy comebacks pop into my mind if I get irritated enough. Just what are you staring at? Hey! I'm walking here! You have a stroke and try it. Why don't you try living a day in my life and see how wonky you do things to get 'r done. Even the simple stuff, or would be simple with a functioning body takes thinking and planning before executing. What used to take five minutes to do now takes triple or quadruple time. Think hours or days to accomplish for somethings.

Take my new garden beds for example. The new garden will be on the third and fourth tier of the orchard. Each terraced area has a 5' drop. Short of traversing either way to the ends of the 75' rows to steeply sloped (about 45°- 60°), I'd need steps and handrails. They're on the to-do list. In the meantime, I'm taking my garden cart load of hay, compost, and/or wood chips to make the no dig garden. Yes, this is another gardening method to optimize a small space to produce more. This is labor intensive. It takes four cart loads of each for a 50' garden row and walkway/weed barrier. Not to mention all the cardboard that had to go down first. So far , I've managed the third tier  (4 planting rows per tier) in a month and a half. With a fully working body, it would have taken two weeks tops.  I'm not stopping mind you. Now three months, later it's all done. I'm just griping about living post stroke and doing.

Even to the casual overserve, the is something "not normal/" about the way I do everything post stroke. It's hard work for me to continue  Sometimes the look is a stare while they try to figure it out in their mind as to why it's so strange.  Sometimes, they continue to stare out of curiosity. Most times, I don't mind it. because I've figured it out and I'm living my life post strokes and sill doing. Sometimes it's therapeutic like with a new strokee to show them new ways to regain some of their independence. Other times, it may be a family member of a strokee unbeknownst to me until confronted. I have no problem confronting a stranger staring at me if it goes on too long. <Wicked, evil grin> 

It won't stop me from what I'm doing or make me downgrade my pride of figuring out how to live my life post stroke.  My struggles to do are too great to let anyone take that away. Everything I relearned has taken me hours, days, weeks, months or even years to achieve. I work very hard at being able to do. Can I do everything I once could? Nope, of course not but I haven't tried to do everything I once did. I guess I'm just built stubborn that way. I'll struggle with something for hours before admitting defeat this the bad fall I had a few weeks ago.

Some things just get set on the back burner while I take the easier route and ask for help because it's easier and faster... like opening a can with a manual can opener. Yes, Barb, you told me how. It's just faster and easier to ask my roommate to do it. Yes, I can lift a 50# bag of animal feed or anything, but I don't unless I absolutely have to.  There have been quite a few times over the years even with living with someone else that I've  had to.

So do I care that someone is staring at me because I'm doing things differently than they do it? NO! I'm a rebel and a leader. I won't be cowed by anyone except for God. I'm making my way through my life the best way I know how. So either follow or step out of my way because I'm coming through.  If you are a fellow strokee or family member of a stroke survivor, introduce yourself. I'll gladly talk to you and show you.

For the rest of you...Stare at me if you like I've found the method that works for me for the goals I've set for me. Just know that if you were my child, I'd box your ears for being rude! No matter how old you are.

Nothing is impossible.

Sunday, December 27, 2020

Sunday Stroke Survival: 2020 Wrap Up and What's to Come

Oops I missed posting last week.
I hope everyone had a good Christmas holiday.  It's that time of year again for reviewing the past year and figuring out what's the plan for 2021.

In 2020 review...

I finished my cancer treatments with a clean bill of health!!!

Last year really flew by with only a couple events of any real, personal interesting points.  I got infected by COVID-19 way back in February and I didn't realize it until much later. The end of January, Mel got sick with a fairly high fever, horrendous cough, and moderate difficulty breathing. With no medical insurance, she fought me on going to the hospital, but I finally (after 3 days) won the argument. The doctor at first, thought it might  the flu, but ruled it out fairly quickly. They wanted to admit her, but she refused. They didn't know what her problem medically was. I brought her home and treated her the best I could homeopathically with herbs and immuno-boosters I grow here. I warned her that if her fever went above 103°F and if she did not respond to me she was going right back to the hospital. It didn't happen. Eventually, her fever broke and she got better except for a cough and loss of stamina which lasted for months.  As an after effect she now becomes short of breath and has a heart condition.

The first part of February, it was my turn. Even though I'd wash my hands and wore a mas while treating her, I got sick though not as bad. I felt like I was going to cough up pieces of lung tissue at any moment (I didn't), had a medium grade fever (100°- 101°), and was shorter of breathe. It lasted about two weeks. I had lost my sense of taste and smell  (I still moderately suffer with this). I did touch bases with my PCP, but didn't go in. His instructions were the standard- control the fever, push fluids, and rest. If it got any worse to go to the ER. So that's what I did. 

We didn't hear about COVID until March with the rest of the country. We figured that's what we had been fighting. An antibody test shoes I had it. We were luckier than others with this virus. It was no worse than a very bad cold or brush with the flu.

I had a T-car procedure done on my left cardioid artery. Uneventful, but now have to do the right one done Jan 5th 2021.

I started Botox again for my post stroke(s) spasticity. With Emory in and out of locked down mode for nonessential surgeries, it was looking like summer of 2021  before I could have another baclofen pump implanted. So far, my body's response to doing Botox again has been good.

After the first series of 400 units, I was almost able to straighten my arm to full extension and raise it above my head. Which is way better than the 6" I'm able to move it without the injections. I could shave my underarm with ease!  The gain gradually reduced over time and by Thanksgiving the pain of my entrapped shoulder and bicep returned but I was scheduled for more Botox the first week in December. So it was manageable and short lived. I'm in physical therapy again.

I got another AFO and new shoes. The AFO still needs work. I've formed new pressure sores above my ankle and at the first metatarsal (at the base of my big toe). Oi Vey! So far though, no reoccurrence of the pressure sore in the spot that has plagued me for eight years. I guess I should count my blessings. This is the first time my shoes didn't need alterations of build ups and rockers added.

That's been my year besides falls. When I entered PT again they estimated my falls by how many I had in the past couple weeks... 48 falls a year! That sounds like a lot, but thinking back, it's a little on the high side. I remember about 30... not counting falls that I averted by catching myself before I actually hit the floor or ground. Is that a lot? It seems fairly standard to me after back surgeries and strokes in the odd 30 years or so.

What's coming up on 2021...
  • The right sided T-Car procedure of my carotid artery is slated on the 5th of January.
  • We've got our new garden area ready for seed potatoes in February. The 5th tier of the garden is almost completely revamped for vegetables. The seeds have been ordered. So we should get a good harvest.
  • We staked out where our tiny houses will be built and leveled it. We've set the foundation piers. Now we've just got to save for the rest of the lumber before building can commence.
  • My 9-month post cancer ultrasound (the week before Christmas) of my thyroid area showed another mass. Just when everyone thought it was gone, surprise! So everything else is up in the air again! But for now, I'm still alive and fighting. So much for a normal year. Sigh!

Nothing is impossible.

Sunday, December 13, 2020

Tumbles and Stumbles Again

 I took a bad stumble and fall this week. Five AM, and I'm walking through the kitchen to get a soda so I can take my morning meds. From the dim light from my bedroom, I thought I could do it safe enough. I'd done it several times before with no incident. What I didn't know was Mel had moved the box fan by the trashcan. It was safely tucked away behind the trashcan awaiting to be cleaned of the season's dust and dirt. What I didn't see was the loop of power cord in my path. I wobbled on it for a couple seconds, and then I went down hard on my back side.

Previous back surgeries and rods in my spine reverberated  up and down leaving a tingling sensation down both legs. I pulled a drawer out to aid me in rising back on my feet. I braced my AFO clad foot flat on the floor and pulled myself up with my functioning leg. Once I was halfway up, the functioning left leg crumpled. It wouldn't support my weight. The tingling now progressed to numbness. Boy, I really did it this time, I thought.

I waited a couple minutes and tried again with the same results. To compound things, I had to pee. I positioned the pad and let loose of my bladder. After the fourth attempt to rise met with failure, I was exhausted and surprisingly nauseous. I grabbed a mixing bowl and retched into it. Great, now I was lightheaded to boot.

We had corralled the puppies into a 8'x8' area with wire shelving. Of course, the runt figured out how to climb it and get out. She's so happy and proud of herself for doing this. She'll come to me with her tail wagging to beat the band. She has since showed one male and another female how to do this. But as an added twist, she'll climb back in the enclosure for nap time. The other two hasn't learned this yet.

So there I was in a heap on the floor feeling thoroughly sorry for myself and who should come visit me, but the runt. She's full of kisses and snuggles, and I can't help myself but to smile and laugh. There's just something about a puppy so glad to see you with joyful glee that you can't stay miserable.  After a few minutes, she went off to see what trouble she could get into.

I evaluated my situation. The bottom drawer that I had been using was way too low, but the next drawer up from my pots and pans drawer was too high. What I needed was an ice cooler or dining room chair. But either of those things were in reach. I could maybe crawl to the breakfast nook to grab a chair, but at this point I had been on the floor from my fall 4 hours before. I was exhausted, thirsty, and sleepy. I had in fact dozed off from time to time during this. I'd be awakened by one of the dogs begging to be fed, or the puppies (all three were loose now), or the cats. But I couldn't help anyone including myself.

Finally, I hollered, "Mel, I need help!"
"What's wrong?"
"I've fallen and can't get up!"

I hear her get out of bed. I'm holding one puppy who's snoozing on my lap. I handed it to her.
"Whatcha doing with her?"
"She got out and was cold."
"What have I told you repeatedly about using a chair to hike yourself up," came Mel's voice from the dining room as she put the sleeping puppy down by her siblings.
I was too exhausted  to try to explain how hard I fell, about my numb legs exacerbated by Charlie horse cramps when I tried to move them. I just let her go on.
"Never mind, I'll get you one. Geez!"
She plopped the chair next to me. 

Did I mention that the fire in the wood stove had gone out while I was sitting on the floor? Or that I was only in my nightgown? It must have been 50 something degrees on the floor. I had pulled dishtowels from a drawer to throw over my shoulders for warmth for hours as I struggled to get up. It sure didn't help me moving my legs. Or, that my nightgown was soaked to the waist with urine? Now, you know.
But, I struggled to get to my feet by placing my upper body onto the chair and dragged my feet into position. I was wobbly and my legs didn't want to support me. But, I used the chair as support as I crossed the expanse of the kitchen. I was borderline dehydrated. It had been 18 hours since I'd eaten last. All of this contributed to my wobbly feeling. I held onto furniture as I made my way to a hot shower. I was a frozen mess and needed to thaw out.

Before you think Mel is a cold heart witch let me explain something to you. Mel and I have an understanding. She doesn't jump in to help me and do things for me by my request. She would have jumped in if I had asked her to.

I felt a little bit better after a long, hot shower. My knees were scraped and bruised after my repeated attempts to get up. There were also numerous puppy claw scratches. After my shower, I went to the kitchen for my soda and I took my morning medicines even though it was time to take my afternoon doses. I grabbed a couple handfuls of peanut butter stuffed pretzels bites. I went through the afternoon in a hangover phase as is usual after a fall for me. I know my body will hurt worse tomorrow. Mel had the wood stove belching out warm air and all was right with the world again. Sort of.

I cleaned up the puppy messes, fed the dogs and cats, and cooked dinner. Well not exactly cooked dinner, it's was reheating leftovers. We watch a couple shows on Netflix and I got another hot shower. My body still aches, my head is throbbing, but I had to stay up for my 11PM meds. Maybe another hot shower will help. After that, I crawled into bed. Tomorrow is another day in the life of living post stroke.

Nothing is impossible.

Sunday, December 6, 2020

Sunday Stroke Survival: I'm Back!

 Well, sort of. I'm still using the HP streaming "computer" with a 256 gig SD card to download all the updates and move files over to it so it's workable. Even with the black Friday sales, I couldn't buy a new or refurbished computer with the property tax due too. But, the SD card was less than $40 so I can start blogging again.

While I was down with computer woes, Kassity had her puppies November 1st. She had ten! Seven girls and three boys. Within an hour of being born we lost one boy and a girl leaving eight. All eight have gotten huge over the last five weeks. They now weigh about five pounds a piece. They have taken over the living, dining, kitchen. and breakfast nook. Both bedrooms have boards to prevent their access to them. They are constantly underfoot climbing our legs for attention. Kassity has weaned them early. She wanted her freedom from them. Now, they each have a small stuffed animal to play with. They look so cute carrying them around the open area. One minute they are cuddling with them and the next, the pups are shaking them trying to "kill" them.

Walking post stroke has been precarious. It's hard carrying the fabric tote with five splits (6"x 8"x 18" about 8-10lbs each) of firewood normally, but with four to eight puppies swarming the feet, it gets even more problematic. I use extra care when walking around them. I make sure I can hold onto something otherwise I'd trip and fall, or step on one of them.

The puppies are fascinated with my AFO. And no, I got my new one but it doesn't fit right either. My new shoes are on back order until the 15th. The Hanger folks refuse to adjust the AFO much without the new shoes. Frustrated, I lashed out at her. "All I want is to walk without pain! Is that too much to ask for? Can you do that or not?" In rare form I asked, "If the foot was amputated below the knee then could you build me a foot that worked right? I doubt it." I never had so much problems with Hanger in my old hometown as with this one. I've had a once a month, or every three months standing appointments with them over the last three years. We're driving 60 miles round trip with each appointment to boot. My frustration load has tipped and the end is not in sight. 

I hate this going around and around for months and only fixing the problem in small amounts. It's like going to get new glasses and you are looking at the eyechart with that machine flipping lenses, and they ask better or worse? Once I answered neither. The optician said I had to pick one. But I had answered truthfully the first time. That's about how I feel about Hanger now. I can't even go to the Hanger back home because the tech I had all the same problems with her not listening to me for two years is now head of that clinic! GRRRRRRRRR!

I talked with one of my neurology PAs last week when I had my Botox appointment and told her about my frustration with Hanger. She asked me whether I had tried Alliance Orthotics? I honestly never heard of them before. Have any of y'all? Do they listen to you? Can they really fix/build an AFO that works as advertised without causing pain and pressure sores??

Is walking without fear of falling with a spastic foot and ankle an impossibility for an AFO? If so, tell me. I'll make an appointment with another orthopedic surgeon tomorrow to schedule an amputation. I'm so tired of dealing with this! I mean I've been fitted for 6 AFOs (with the possibility of a 7th) in the past 8 years! All I want to do is WALK WITHOUT PAIN!! <stepping off the rant box>

The Botox worked fabulously! I was fantastic to be able to lift my arm above my head again., The return of the trapped shoulder pain and strong muscle spasms didn't really return until Thanksgiving. My appointment for the last set of the year was on Friday. There was an additional 100 units for use in trouble spots making this dose 400 units versus 300 units. It was fantastic to lift my arm above my head again. It's been since June of last year since I've been able to do that. I did manage to straighten my elbow to 170 degrees. the last 10 degrees of straightening the elbow to full extension was hampered by a new contracted spot in the bicep. The wrist recovered a 5 degree rotation and extension. That's movement than I've gotten in four years in therapy. The extension capabilities gradually wore off as Thanksgiving approached and the Botox wore off. I was locked in again by the next set of injections.  The neurologist did say he if he could get approval for 1,000 units (he can't) it would fix me up royally. I looked at him in shock, "Really?" "Just about," and he nodded.

The three years off from Botox did reset its results almost fully. While I was hoping for the four or five months lasting power, I knew that my spasticity has gotten so much worse that it was a pipe dream. For now, I'll take what I can get even though I'm giving the doctor permission to inject poison into me. Emory is still on partial lockdown again with the new resurgence of a new strain of mutated strain of COVID-19. While the option of having the new Baclofen pump placement in Athens is available. 

I just hate breaking in new doctors into the mix. My "ologistitis" is getting to the tilt point with the addition of an Otolaryngologist (for my silent acid reflux), a gastroenterologist (for my silent acid reflux), and a vascular specialist in 2020. Okay, a specialist is not technically an ologist but he has a specific field of study and treatment so to me it counts as one. They join my cardiologist, pulmonologist, immunologist, neurologist, oncologist, and my endocrinologist.

I think y'all are all caught up again. I'll be continuing physical therapy again next week when the Botox kicks in fully again. If only my body would allow movement without Botox...a girl can dream, can't she?

Nothing is impossible.