Sunday, January 31, 2021

Recovered, Finally!! Sort of

 It's been a long slow recovery from my T-CAR procedure. But I can finally say that I'm over the hump towards recovered from my procedure. It took the better part of two weeks to get my stamina back. I've just been recasted for my EIGHTH AFO in almost 9 years after the newest one broke bones in my foot again! SIGH! If I didn't need it to walk, I'd give up. So I', back wearing only my old (3rd AFO) again with no shoe. When I wear a shoe, my foot swells horrendously.

Interestingly enough, I got notification from Medicare that they have denied payment for that last AFO and Hanger can't bill me. So it should prove interesting how long they will work for free. Although they assure me they will make it right. No news yet on this newest casting payment. I knew it would happen eventually. So further treatments and adjustments are up in the air for now. I'm not trying to be unreasonable here. I just want to be able to walk post stroke without pain, pressure sores, nor broken bones. Is that too much to ask for? 

I'm so sick and tired of hearing every stroke is different and spasticity is an ongoing complication that I'm about to scream "Cop out." You know what the problem is. There's nothing new about it. Just fix the problem. I know I'm not the first. I surely won't be the last. Sure, I would make it easier on everyone except me and just stay in a wheelchair, but I refuse!

For the past month, I've seriously been considering a nursing home placement for me. But I'm too mentally aware for that. I've considered assisted living too. It would take every penny I get, and then some. I'm just at the point where, even with a roommate, I no longer feel able to live by myself. Yes, I've even looked into a senior living type housing. I'm tired of ending up on the floor and waiting for help. Of course a properly fitted AFO would go a long way in fixing this problem too. The waiting lists for these other options are long.

Does it sound like I'm frustrated?/ I am. It would mean leaving the lifestyle I love behind and preparing to die. Or at least that's how I see it. Am I really ready for that? No, not really. I still think of myself as young-ish and full of life. There are still things I want to accomplish in this life. I just have a body that's defunct. In reality, I've had a body that's defunct since I was 26 years old, but I've kept going and doing. I just know that if I'm going to continue living this lifestyle, I need a break for the good.

I told Hanger that they had this one final opportunity to make my AFO right. I've been more than patent. I've given them the seven years I've been here to fix my AFO issues to no avail and I'm still using the articulating, ill-fitting AFO that I started with. Now, that Alliance has opened up shop, I'll be going there next. I've heard nothing but praises for the tech over there. I have nothing to lose either.

Nothing is impossible.

Sunday, January 17, 2021

T-CAR, Just Say No to Nerve Block Anesthesia

 Now, I'm no stranger to needles. For the past a decade, haven't I been touting the benefits of dry needling for combatting spasticity? Twice a week for at least an hour, I allow my body to become a pin cushion seeking relief from the spasticity and gain mobility. So, when I had my left carotid artery done, TCAR procedure, in March of 2020, the anesthesiologist and I had a serious conversation before my procedure about my allergies, all19 of them to be exact. After all, if I died because he screwed up, nobody would be having a good day, right?

He suggested deadening the nerve with needles. The after effects included pain, bruising, and swelling. But it was a good work around to combat my issues. This time, I was well aware of the procedure. Same anesthesiologist as last time ditty bopped into my cubicle. "It worked so well last time. Let's do it again." Part of me screamed NO! but my sensible nature kicked in. Anything is better than
dying because of possible new allergies popping up, right? That's what happened at Emory, I had a reaction to one of the anesthesia drugs. Usually, when you have an allergy to one class of drugs that whole class of drugs become an allergic reaction warning. For example, Lidocaine. That's a huge class of drugs. Dentists use Novocain to fix your teeth, Lidocaine is used for when you get stitches and a host of many other treatments. Many topical solutions have a *caine derivative in them Chloraseptic throat spray, Hemorrhoid cream, Ora-jel just to name a few. Luckily I've had no ill effects to the *caine" family so it could be worse.

The decision of choice was taken away because the anesthesiologist chose the simpler option. But let me tell you dear readers never again. I personally do not know the gauge the needles were that was used nor how many times it was rammed into the target area. I lost count after thirty. But it was an awake nightmare I couldn't get out from. I wanted to scream to get him to stop, but I was unable to utter a sound. I think I finally passed out from the pain. When I was moved from the recovery room to my room for a 23-hour admit, I heard the report given that I was suffering from right sided facial droop aphasia so my speech was garbled again. For the next six hours, I was in an awake nightmare of being unable to speak again and making my needs known other than shaking my head.

I firmly believe that my anesthesiologist went to the Marquis de Sade school of needling because in over a decade of being needled, I have never felt so much pain while being needled!

Even now, three days later, I'm severely bruised from the ear to my collar bone (It's black no blue just black). I can barely open my mouth without pain and I feel like I've got an ear infection. Turning my head to the left make the ear pain worse and turning right  can only be accomplished 45° out of the 85° that I could turn prior to the needling. I guess in some ways I should be thankful. I mean the T-CAR was done. I had no reaction to any anesthesia. And ultimately, I didn't die.

In 90% of complaints about care in the hospital is about the food. I wouldn't know. I was NPO upon arriving and didn't get to my room until 9PM. The kitchen was long since closed. So I had nothing to break my pre surgery fast until morning. Breakfast arrived, a tech delivered my tray, but I was unable to hold or use the plastic utensils effectively to get the food to my mouth. I did mange to drink my 4 oz of cranberry juice without spilling it. I tried calling out but my call light gadget had slid beyond my reach. I found my voice did not carry very far through the closed door. The PA arrived and asked me if I was ready to go home, I answered YES! even though I had tons of questions about what had happened during my surgery to cause so much left sided weakness. I had no doubts that the surgery was completed by the huge dressing on my left and right groin. The PA told me about activity limitations and my next appointment in their office and then she was gone.

I was double teamed getting dressed because they needed the room for the next patient and I was whisked in a wheelchair down to Mel awaiting to be pick me up. The tech bodily picked me up and put me in the car. We drove home. Mel dropped me off at the back stairs and for the first time in over 24 hours, I was left to maneuver under my own power.

I made up the back steps slowly. Then came the two steps into the house. I managed one of them but my tight leg wouldn't hold my weight to make the second step. I fell into the house and was on the floor of the laundry room. Mel brought me a dining room chair that usually assists me in getting up, except this time it didn't. After two hours of struggling. I yelled at Mel to call 9-1-1. They eventually arrived and helped me get up. It was now 7PM! I hadn't eaten anything in two days. I was weak as a kitten and shaking from both the cold and the soaked clothes I was in. YES, there was a repeat urine accident while I was on the floor. I was sore, frustrated, and exhausted. I made my way to the bathroom and shed my wet things donned my nightgown and went to bed. I never got warmed up even under my quilt and a portable heater blasting heat 5' away from me.

The next morning, I got up to Big Red's crowing. I fixed myself a bowl of cereal. The first sustenance I'd had in three days. I started the wood stove, but was unable to pick up the splits of wood to keep it going. Exhausted again, I goy into bed and went to sleep again. By the time I awoke again Mel was up. She had made chicken noodle soup and the wood stove was cranking out heavenly heat. The place was warm! I thought about a hot shower and decided to watch some television with Mel instead. After that I crawled into bed, warm, and a full belly of chicken broth plus a few homemade egg noodles.

Apparently I had ripped the bandage from my neck during the night because after I donned my AFO and waddled to the bathroom the next morning, I was greeted by the red gash on my neck when I turned on the bathroom light. I examined the area to check for new bleeding, there was none. The incision is twice as long as the left one, but I know the scar will shrink with time. I'm no raging beauty anyhow, but still
it was a shock. Plus, the blackness from the bruising the nerve block caused. I know between the Plavix and the heparin they gave me during surgery, the bruising would be bad. Still the large area affected got to me. The bruising from the groin wasn't as bad as usual though. It was just the size of a dinner plate rather than stretching from my belly button down to my knee. By the third day some of my stamina has increased. I actually made myself scrambled eggs and toast for breakfast and the same for dinner. I think tomorrow I'll start some beef broth. I'll throw in some mushrooms and onions for y going down a halfway French onion soup for dinner. Something hot and soothing always is good on cold winter nights. It's only going down to 36° or so, but it will be yummy.

Nothing is impossible.

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.