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! 

Remember...

Nothing is impossible! 

Sunday Stroke Survival: Recovering in Slow Motion

Recovering from a seizure, near death, a massive infection, and a baclofen pump removal surgery is no picnic. It's recovery in slow motion. Add advancing age and living post stroke into the mix makes recovery even slower.

I am now  2 1/2 weeks out of the hospital. To date, I've cooked 2 meals with assistance, been out of the house once for a shopping trip (I didn't go in, just sat in the car), I've taken two full showers, and walk one row of the garden (26'). Mind you, not in the same day or even every other day. I haven't had the strength. Even climbing four stairs is exhausting. We've had a couple of chicks born to a broody hen that I haven't been out to see. After each event, I've had to take a nap and takes a day to recover from the activity!

I'm feeling every one of my years. I no longer need a helping hand to rise from a chair although it still takes a couple of attempts.My functioning side is weakened from so long in the hospital. I wasn't allowed to get up from the bed at all until I was discharged.

So what am I doing about it?

• I've enlisted the help of my home health care PT services for strengthening. Not that I don't know the routine by now, but the refresher is good.
• I make a point of rising from my desk every hour and walking the 40 steps to the bathroom. I usually don't make it so I've back tracked into pull up again. But, this is a strengthening exercise. I'll retrain my bladder later.
• I make a point to do one little thing extra each day. It could be making myself breakfast, snacks, lunch, or dinner. Like tonight, I'm making Goulash from scratch and biscuits. That's something new so far. I may have to cook the ground beef and sit down, chop the onions with my slap chopper and sit down, drain the beef and add the onions, and sit down, and add the spices, tomatoes, macaroni and sit down while it cooks. Finally make my baking powder biscuits. I'll sit down again while they bake. I'll serve it up. Mel will carry it out to the back porch because I need my functioning hand to maneuver the steps. I'll be sweating and exhausted by then, like I've worked all day in the garden and tended the animals.
• I'm still taking a daily two-hour naps to get through the day. Between the baclofen, dantrolene, and seizure meds I stay sleepy. I haven't dared to take my valium to ease the increasing pain from the spasticity.
• I keep a 1lb hand and ankle weight on my functioning side by my computer and do 10 reps every two to three hours. While this succeeds in tiring me out further, it would be time spent watching a movie or show on Netflix anyhow.

Still I'm in slow motion. The stitches came out this week. They were starting to get itchy and getting caught in my abdominal binder. The incisions still catch me and let me know I can't move that way yet. So I know I'm healing. I've now finished all my antibiotics. If any germs lived through a month of four heavy duty antibiotics deserves to live. You'd think that I recover faster doing all of this, but I'm not. I'll keep at it. Maybe one day, I'll awaken full of energy and giddy up and go but I'm not holding my breath.

Nothing is impossible.

Sunday Stroke Survival: Arise and Walk Without Pain

This week seemed to be forever getting here. I am actually able to walk without pain! Let me revise that statement. I was able to walk short distances without pain. At least not the twisting knife in the foot pain I was in. I still have twinges when I climb stairs and am up on my feet too long. But, I'm giddily happy to be able to move again without pain.

But my foot is healing! At least that's what the pain reduction means to me. Or, it might be the new rocker sole on my shoe that takes the pressure off the ball of my foot. Or, it could be my new AFO. This new one takes in account the atrophy in the calf muscle, supports my ankle better, it has a non articulating ankle now since I can't dorsiflex anymore and plus has a build up on one side that adjusts my stance in a more natural way. Don't worry if the neurosurgery works, they can put the hinge back in.

Walking with the rocker sole took some getting used to. It felt awkward at first because I was walking on my heel rather than the ball of my foot striking the surface first. But instantly, there was relief in each step. I had to learn a new balance point than the way I was walking with my old shoes. Instead of tripping over invisible lint on the carpet with the toe of my shoe, it's now at the arch of my foot. The dreaded invisible lint will trip me up for several months to come before it will be put to rest. Don't you just hate that? But to me, it's a small price to pay for being mobile on two legs.

You gotta love doctors that will work with you rather ones that are captains of the ship. I wouldn't have any other kind. I hire or fire them, right? My primary care physician is no different. Other than my required twice a year wellness checks, I don't bother him unless I really need something. Sometimes, he's easier to access than my specialists (*ologists). This was the case with the order and documentation for my new AFO. I made the appointment and showed up three days later. First thing out of his mouth after "Hello" was "What do you need, Jo?" I like that.

After I explained what I needed and why, he examined my leg and AFO, my leg in the AFO while standing and walking. He's thorough and straight business jotting down high points on his notepad as he went. "This won't do. You have to have a new one. I'll be right back."

He was gone twenty minutes. I could hear him outside at the nurse's station dictating. He came back in with four sheets (single spaced!) of documentation that was required. We chatted about my kidneys and the up coming aneurysm surgery for a few more minutes and like I said before about my kidneys...nothing can be changed was the general conclusion. He'll just monitor the progress of the failure. When it gets bad enough, he'll refer me the another specialist.

That was it. All done except for dropping the paperwork off at Hanger Orthotics. I'm not going through that mess again like with my shoes last year. My doctor did add, if they need more information for them to call him. He'd write another chapter for them. He said the last ending with a throaty chuckle. Can you tell he's been around the block a few times in battling insurance companies and Medicare? That's what I love about older doctors, they know the ropes. I'm not opposed to holding their hand through the process, but it's refreshing to not have to.

Not bad scurrying about for a month, is it? Usually, the hurry up and waits catch up to me. I'm just thankful, it all fell into place before I broke some more bones in my foot. Spring is coming and our busy time in the garden and orchard. The rabbits need to get their close haircuts (shearing) before the weather becomes unbearable for them and we've already got one hen showing signs of broodiness. Now, I just have to get my stamina built back up to handle it all. Don't worry, I will.

After all...

Nothing is impossible.

Sunday Stroke Survival: Killer Inactivity

Credit

For someone like me, inactivity is almost a fate worse than death.  It has never been my style. Just after my first stroke in the acute wing of the hospital, I was going nuts and that was only four days!

Now, a couple of weeks has gone by since I broke my foot. I'm definitely going insane. The pain in my foot has not abated. It isn't any better. Even the new x-rays show no healing. Absolutely none. So my forced inactivity continues and I'm bored. There's only so much Netflix, computer time, spinning, and knitting I can do. Coupled by a spell of warmer weather (60s), I wanted to be out in the outside and doing.

Do I sound whinny? I know I am. I should be grateful that more bones didn't and haven't broken. I am but not really. I'm yearning for my old life where I could escape for hours or days writing. That's how I survived the months after I broke my toes last time. I find myself complaining a lot, and that's not me either. But, I'm having a hard time stopping myself from voicing my frustration.

I may not be a diabetic anymore, but the diabetic neuropathy in my legs, and slow healing associated with diabetes continue on as if I was. So does the poor circulation to my lower extremities. It's maddening! You do everything right and it still kicks you in the hinny. It ranks right up there with post stroke spasticity.

Speaking of spasticity, I'm still in a holding pattern with Emory neurosurgery. The first appointment available is not until May! I know you were wondering.

I'm in another Catch-22 with my foot healing. The build up on the heel of my AFO causes more pressure on my lower foot. Thus it causes stress fractures from just walking with it. But I need the build up because of the Achilles tendon contracture. I can't even get therapy or do exercises to stretch my Achilles tendon, like I was doing, because of the fractures. I do alright, most days, with wearing my AFO only inside the house. But Lord help me when I have to wear a shoe. The pressure of the shoe sends me back to the initial pain. Pain levels to 9 or 10 out of 10.

Rethinking the Iwalk crutch. Ease of use with the Iwalk crutch is dependent on a normal gait and balance. It isn't recommended for anyone who has balance issues. Living post stroke, like I am, I do not have a normal gait or balance. I'm constantly stumbling on invisible lint on the floor. The terrain, where I live, is not level so I'm constantly stepping up and down on angles. Considering all that, my balance, though better than it was, is still not great and I'm still prone to fall.

That brings me to another point against the Iwalk crutch. To sit or drive, you have to take it off. That means undoing the three straps to take it off and redoing them and tightening them up again every time I got up. With two working hands and good balance, it might not be so hard, but for impaired me? Can you see me going to the store?  I'll get to my car, sit catty corner on the edge front seat (remember when you sit the crutch part is sticking straight out so the car door is a factor), drive to the store and do the same thing in reverse before even entering the store. I might mention here that on the plus side of this equation, all the buckles and adjustment straps are on the inside the thigh and calf (easier to access). You would repeat the whole process to go home. Even for someone without chronic fatigue this would be taxing. The only good thing is that I wouldn't need a motorized cart to shop with.

So basically, I sit at home. When I do go anywhere, like to therapy or the drug store, I'll painfully put on my shoes. The shoe adds to the pressure on the fractured bones. In the house, I'll just don my AFO only. (I know, I know. You're not supposed to)  I take my rollator to the car. But first I have to manhandle the rollator down three steps. Painful process. I manhandle the rollator into the back seat, pivot with my back to the van into the front seat of my van, and repeat the process when I get to therapy. I'd have to do the same with a knee scooter.Then again, it supposedly takes two hands to operate just like my rollator. But I manage okay so long as there are no drastic inclines or declines.

So that leads me back to killer inactivity. Mel is having to do everything and I feel about useless. I will occasionally cook.I can periodically put my weight on the AFO build up in the heel, but the spasticity on my foot causes my toes to curl under and my big toe to arch up. If I stand for too long the spasticity combined with muscle spasms which twists my foot and  put pressure on the fractures too. The strap on my AFO that prevents this cuts right across the fractures causing pain. I can stand bearing most of my weight on my functioning leg or sitting on the rollator's seat. Keep in mind that none of our cabinets or appliances are the right height. Being short, I'm about nose level to whatever I'm doing in the kitchen. Not exactly safe but it gives Mel a break. It also breaks up my boring day to day existence.

I do try to keep my brain active. I play games like Tripeaks and Scrabble on the computer, but after an hour of playing these, I  quickly get bored with these. I'll watch YouTube, but then I'll be chomping at the bit to do or try something only to be stopped by my foot.

Another three weeks til the next set of x-rays. But, I'm using pain as an indicator for amount of healing taking place. Mel keeps telling me that pain is associated with the bones knitting back together. I hope she's right. But having broken more bones than her, I fear she isn't. Meanwhile, I'm crossing my fingers. I'd cross my toes too if it didn't hurts so much.

Nothing is impossible.

Sunday Stroke Survival: Keeping the Faith 2

Part 2

Once again, I'm letting God have this blog.

I had a comment in here from Barb Polan that I felt that I should address here since I can relate to this one too. Can't all of us that haven't received THE promised healing from our strokes yet?

 

You left out this thought (which I have frequently): when other stroke survivors have a breakthrough and can now use their hands or begin to run, one frequent response is "Praise the Lord!" or "I owe it all to God." Now, tell me this - why did THEY receive such help from God, but I haven't? Yes, I'm a whining, selfish being, and I know life's not fair, but why not me?

No and yes, Barb. You are being whinny and selfish human being. <smiling> Just as I can be. Remember, what I said about being a petulant child?

I realized, while praying about this comment and my own thoughts, that healing has actually taken place. Am I as bad off as I was initially after my stroke? No, I am better as are you living post stroke. Was it a complete restoration of your body? Nope. Neither is mine. Am I expecting my healing to be total? Yes. Most definitely. I have faith and am expecting to be totally healed.

BUT, 

I knew you were waiting for this. There always is a but or butt head, isn't there?<smiling again>

Yes, I was healed (partially). I can walk enough to get around under my own power, though not with the ease I once did. I can talk enough to make myself understood, although the aphasia can get the better of me. I can use my arm to hold things and help my functioning side, with difficulty by using my shoulder muscles. I can drive a car and operate some machinery, although not like I did before. I can write with a pen, though not with the accuracy, neatness, or correct spelling I once did. ACTUALLY I DO NOTHING AS I ONCE DID. This is because I lost my dominant side. Do I say, "Praise the Lord," or "I owe it all to Jesus." or "Thank you, Jesus" for the extent of healing I have received already. Yep, I do.

BUT,

I still do the most of what I need to do as do you. This is important and shouldn't be discounted. Sure, it would have been easier if I hadn't had a stroke, or a second one which set me back and took a couple more things away.  I still say, "Praise the Lord." Because I received a second partial healing from the second stroke. Yes, I still have difficulty reading and writing. Yes, I still have grammar and spelling issues...Thank God, for spell checker. I still write this blog almost weekly. All I can ever do is try and try again.

Funny and heart breaking tale here. I started writing the cookbook. I had it perfect. Pictures, format, and everything. I was even using a writing program that I had never used before. A wicked feat for me now because of the learning curve involved. I was so proud of myself because I had finished 20 recipes. I was writing again! Yipee! Wahoo!

The circuit breaker tripped and my computer lost power. ARGH! I forgot to save my work. Twenty recipes and six hours of work... gone! Saving was a separate step. ARGH! That's okay, it had an automatic save feature. I found this out when I powered up my computer again. Yippee! I'm saved literally. I clicked the box to recover my work. Another box appeared "Error! Data could not be recovered." ARGH!! I lost it all. I was back to square one. Will I not redo it because of this? Nope! I've started writing it again. I just save after every recipe. Lesson learned, but, it actually looks even better now that I've practiced more with the program.

How does this apply to us with total healing from our strokes?
Just because we believe, and are automatically saved through Jesus Christ, doesn't mean that we will automatically get everything we pray for. It may not happen in our lifetimes, but we have the promise of a new, whole, perfect bodies coming to us in the next. Who better to appreciate it that the imfirmed in this life?

I met a man at the grocery store a couple of weeks ago. Have I mentioned before that I hate Walmart, but it is a necessary evil? This man had been almost totally healed from two strokes. He was very impatient and gruff. He even followed me out to my car to get my wheelie cart. He was talking to me as we went. Me, riding and he, under his own steam. No cane, no AFO, no difficulty walking, and use of both arms. He had to have my cart because he couldn't shop at Wally World without one. Who am I to judge? He also did not offer to help me load my groceries into my vehicle. He just stood there griping about how long it was taking me and eventually sat on the cart. When I finished and grabbed my cane out of the cart, he whizzed off without a backwards look.

I hurled a "God continue to bless you!" at him. Now, honestly in my heart, I felt nothing of the sort. I was irritated beyond belief. Here was a man, in my opinion, who should be grateful and thankful about being able to do what he wanted after a stroke, but he couldn't see it. Here I was, by comparison, a minister who walked in faith and stood firmly on the Rock believing, and was still waiting for total healing. Why him and not me??!! Yeah, I know this feeling very well also. My child self cries out to my Father about injustice and the big WHY. Was I just being selfish and whinny? Yes!

As I asked for forgiveness of being so petty on my drive home, I was shown that the man did not had Christ in his heart and surely had no hope for the next life. He was lost. Rejoice in the healing of others. Even when they say, "God healed me." He is still all powerful. No, we haven't received total healing, Barb. It's not because we aren't faithful. We are! It's not because we are not deserving. We are! It's not because He doesn't love us enough. He does! God just knows we have the fight enough to suffer what was lost in this life and rest on the promise of a restored body in the next. You do not know the circumstances surrounding other's healing. Only God does because He sees the whole picture past, present, and future.

Nothing is impossible.

Redefining Disability Project ~ Post #7

Okay somehow I've got the numbering all screwed up for this thing. Last week I pulled question #6 instead of #5 so I'm backtracking a bit. So if you feel kind of lost, you are not alone. Anyhow here my answer to the question.

What are some significant moments/events in your life that connect to disability? 

Once again they are too numerous to count or pick just one. Whether it's facing raising five children under the age of ten from a wheelchair or being a caregiver for my terminally ill  husband after after my stroke are two of the biggest hurdles. I did fight my way back to standing on my own two feet again after my accident.  Although if you asked my family doctor, it was telling me I had arthritis of the spine after a decade of me raising my #2 daughter with JRA (Juvenile Rheumatoid Arthritis).

My most current event was my stroke. Although no one told me I'd had a stroke until three days after I was admitted to the hospital, I knew on some levels. But then again, it could have just been a TIA (Transient Ischemic Attack). This was me in denial, because the full paralysis took that long take hold. I had weakness and uncoordinated movement in my limbs until then. Once the blood vessel in my brain burst, there was no denying a stroke, because nothing worked.

I had some major concerns once it became evident that it was paralysis of the whole right side of my body...

• How is this going to affect me in doing in the long run? (Care of others)
• How could I take care of my husband now?
• How could I make my deaf husband understand mutual needs and wants with a droopy face and no voice. I had to be able to form the words for him to read my lips.

I guess that has always been my saving grace when facing another disabling event, my ability to focus on others instead of myself. I mentioned it to family members just this past Thanksgiving. I possibly would not have achieved so much in adaptability and recovery if I only had me to think of.  But that's me, always putting others ahead of my needs. So in hospital therapy, I focused on these problems. I worked harder towards a solution. I'm still working harder for solutions for a way around what I can't do yet.

To date, I have not recovered the use of my arm, elbow, wrist and hand. Neither have I recovered my ankle or foot usage.  That's not to say, I'm not still working on these goals because I am, but they are lower in priority than my ability to communicate with my husband or being able to move around and care for my husband. Or for that matter, living independently. 

Sure there are hundreds of things I can't do yet single- handedly even with adaptation, but they are just not that important for me to do, or mind asking for help. For example, cutting my rabbits or guinea pigs toe nails. That's a two handed if not a two handed and a leg job. But I'm not ashamed to ask someone else to do it like the manager of my local Pet Supplies Plus, or my kids to do. It's not like asking someone to wipe your butt after defecating like with my husband. That is somewhat ego busting to have to ask someone to do for you. There are tons of things my husband can no longer do for himself so in terms of disabling events, he's got it worse than I do. See there's always someone worse disabled than you are. Count yourself lucky.

At times, I'm too tired to fight. Yes, you heard it here first. I'm not strong or super woman. I'm like everyone else facing a hurdle...do you jump it and go on, or do you stop. Sometimes it's really hard to cling with my fingernails to hold onto hope, optimism, and a positive attitude. 

Sometimes, I loose my grip on these things. It would be so easy to just give up and give in to the negative side. I call it my pity pot moments. I do try to put a time limit on these episodes, but sometimes, it will go on for days. See. I'm only human too. It's a cathartic break against overwhelming odds that I face daily. I'm not really giving up as much as letting things be. I tend to be depressed during these times too and spend most of my waking hours in prayer. 

Therein lies the difference between what I go through during this time and the way others go through a time like this. It has an end. When I come back to myself, my usual self, I'm reborn in spirit and rejuvenated to fight another day. I jump the hurdle. So what if I see another hurdle in my path. I'll jump it when I get to it not before. If you've ever watched this sport, occasionally you'll see a runner stumble and fall. If asked later what happened, they'll say they jumped a second too soon. Yes, I ran track in high school too... back in the dark ages when dinosaurs roamed the Earth.

Significant events or moments that connect to my disability, there are a ton of examples spanning forty years. These moments are only important because what I did to overcome it. In that, I rejoice and remember. Focus instead of what you are blessed with because it could always be worse.

Disability is a physical thing that alters your state of mind, don't let it.