Sunday Stroke Survival: Waiting and Combating Frustration

Better late than never.

I know I'm not the only one that combats frustration while in a holding pattern. I haven't written here or anywhere else in a couple of weeks because of it. For me, it's doctors, or should I say getting new doctors in my new locale. I mean all of my old docs treated me like I was going to die instantly if I didn't do this or that immediately. And yet, it's been three months since I've seen a doctor an I'm still here. So much for being a sick, dying, old woman. 🤣   Now, that's not necessarily true. I am a sick, dying, old woman who has a complicated medical history. I just haven't had some doctors tell me so in months.

The stress it could cause not only frustration, but anger, grief, depression and a whole lot of harmful baggage nobody needs. It is like a weighted blanket, not the good kind like PTSD patients use. These other issues can eat you alive, hamper recovery, and cause actual damage to your body.

So how do I beat it? Or, at least not let the frustration beat me up and consume me? I often say that it's all a matter of perception and mind over matter. Your brain is a powerful a part of your body. Even a damaged one like for us stroke survivors or should I say, dead gray matter. In a lot of ways, we're better than everyone else because we've beaten the odds and we survived the game of life's roulette table and we're on our way back or getting a do-over. Although, it doesn't feel like that sometimes. But, life is what it is and all you can do is make what you can of it. If you aren't happy about somethings in your life figure out what you can do to change.

Keeping mentally and physically active starve frustration. By being active, you don't dwell on the problem feeding the frustration. So what am I doing? 

For the mental half, I printed a list of all the cardiologists and PCPs in the area. I run the list by my daughter, she has lived in this town for 17 years, half of which working in the medical field.  At the very least, she knows who the real stinkers are. This information is worth its weight in gold and those names are stricken from the list. It narrows down the list considerably. Then, I'll let my fingers do the walking. I'll give each practice three working days to respond and then move to the next name. When I gave my daughter my list I had her rate the doctors by stars three stars meant the practice was the ultimate and no stars meant they were passable. If she knew nothing about them, they got a question mark. I have to say there weren't many of these. So far, I'm slowly making my way down each list. I'll play computer games to rebuild and strengthen weakened areas of my brain, or watch a movie on Netflix, Amazon Prime, Disney. or YouTube. But, I'm doing something with my mind other than feeding my frustration.

I'm in a Catch-22 situation as far as the physical side of the equation. To walk and do I need adjustments made to my AFO. To get an appointment to an orthotics place (Hanger or another of 4 options), I need a PCP because my podiatrist is just  a DO not a MD that insurances demand. I need dry needling or Botox to make the spasticity in my foot and ankle behave which would help in the meantime. That isn't possible until after the 24th when I see my new neurologist (another waiting game). 

My brace not fitting right allows me to stand and walk in twenty-minute increments. So I'll sweep my apartment and sit down with my foot elevates above my heart for an hour. Then, mop my wood floors and back down again. And, so goes my days. By 11 PM, I'm exhausted by the up and downs, and I'm ready for sleep. At 5 AM, I'm back at it again. By the time the sun is high enough in the sky, I'm puttering around pilling this or that weed, talking to the plants, and communing with God, I'm still keeping my twenty-minute on and off my AFO clad foot. During the lull, I've got my phone app tuned to His radio and I'm praising Him the whole time I'm off my foot sitting on my outside door steps. I tend to push my limits when cooking or preserving. Especially, with the final touches. I pay for it by having to prop my foot up for the next several hours.  The dishes don't get done nor food put away until I've gotten the swelling and pain down. I'll be good for twenty minutes or so before I'm back in the chair. I'm really missing my wheelchair or beloved's rollator because I could sit and do. They got left in the barn during the move and we haven't had a chance to go back and get them yet. Mel is still holding onto them for me. 

But for now, I'm doing without. I think Medicare part B would pay to replace the wheelchair. It was bought 9 years ago not under Medicare. The rollator was my husband's as the shower chair, and bed side commode was too. so my Medicare should pat to replace them, shouldn't they? That leaves me with the problem of who writes they prescription to order them? I'll see the neurologist later this month and I guess I could talk to them when I ask for a PT order. Or, does PT order them? Or, does my PCP, if and when I find one? It was so much easier when I was in the hospital before I was discharged home after my first stroke. Sigh! 

Breathe, Jo, breathe. This kind of thinking is a trap to fall back into frustration. Okay, it's time to get busy. I couldn't manage to do the dinner ,dishes last night. Everything was rinsed off and stacked so they are ready to be washed up and then there's a peach cobbler to make for dessert tonight. That will keep me busy until the rain stops. tuning in the app on my phone. Here we go, another day's work begins...

Nothing is impossible.

Sunday Stroke Survival: Being Paid for Waiting

 Do you ever wish you could be paid for waiting on doctors? I sure do. No, I'm not a doctor nor play one on TV. A doctor thinks nothing about agony he/she causes while awaiting decisions being made or even having you wait in their offices for hours past your appointment times. You have nothing better to do, right?

My old cardiologist's office called me after they faxed their notes to my prospected cardiologist's office. That was four weeks ago. I've had a minor bout of congestive heart failure as 25 lbs of fluid squeezed my heart and lungs. It's a good thing I didn't throw away my Lasix after my doctor discontinued it. It's also lucky I remembered how to balance my electrolytes with that great of a fluid loss over the next three days and continue doing it while I'm waiting to get their approval for me to be their patient. I could push the matter and just go to the hospital and take pot luck of the thirty cardiologist in town. Knowing my luck, I'd get Dr. Iamgodnknowit whose the worst in town.

That goes for my choice for PCP, Endocrinologist, ENT, and Allergist too. What is wrong with these people? Is my money not good enough for them? In Cornelia, doctors said they weren't accepting new patients which is understandable. There are only 15-minute spots available in a week. Granted, my medical history is a nightmare, but don't they have student loans, huge mortgages, country club dues, and alimonies to pay? If my medical history is too much for them to feel comfortable with, tell me so I can look elsewhere. After all, I got nothing better to do than wait on them. I don't have a life worth living.

I am trying to live my life post stroke to the fullest. I've got a garden to create, a family to grocery shop and cook for, and I can think of half a dozen things I'd rather be doing instead of this waiting around. Of course, I'm doing most of those things now while waiting on them but my frustration levels are high.

This too shall pass. Breathe. And Repeat.

Nothing is impossible.

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 Stroke Survival: AFO Woes, Weather, and Other Stuff

As you can guess, I was hard pressed to talk about one thing this week. So much and so little has been accomplished.

The garden has been planted. All that's left to do is busy work like weeding until harvest time. But I can't because of the rain. I do get out to pick dandelions, clover, strawberry and black berry leaves, and grasses for the rabbits. I'm picking grass seed heads for the corralled hens too. This takes me about an hour each day. That's including feeding and loving on them.

My AFO still isn't right. I'd gotten up to three hours a day wearing time in the new new AFO. It still rubs my ankle bone. It can be down right painful too. If I just sat around all day this wouldn't be a problem. But I have a fairly active lifestyle. I'll burn up 6,000  steps in a few hours between the animals and the garden. On sunny days, I'll round off 10,000 steps by including the orchard. But I haven't been doing that lately. I'll be up on my feet for an hour in the new new AFO and then spend the next  30 minutes on the porch swing to rest my foot and ankle.

At around 2:30 of the three-hour mark finds me on the swing watching the spinners and the hummingbirds because it's too painful to stand up. The wind spinners were a birthday gift from a YouTube viewer who made them from soda cans. I just love them. I set my phone alarm for the three-hour mark. I usually am counting the minutes until I an swap out AFOs. But that's not really helpful because the old AFO is the device that caused my foot fractures. Even with the adjustments, that old knife stabbing pains return after a few short hours. So I'm stuck sitting more than I'd like.

Even with the extra padding in the new new AFO, it still isn't right. It still causes pain, but my foot alignment is correct. In talking to Hanger, at yet another appointment, my foot is so far out of whack that any correction will cause pain. So we are at an impasse. Do I give up alignment and a normal gait, or do I go back with to the poor posture, limping gait of the old style AFO? I'm hoping the intrathecal baclofen trial works on the leg spasticity. Eventually, I may just get rid of this AFO.  I'm still waiting for that appointment.


The weather has been, in a word, wet. It has rained every day for three weeks. There is only about a two-hour window each day that it isn't raining fairly hard. I said I'd never complain about the rain again after the drought of 2016, but I'm close. I guess it's a God's blessing kind of thing because I can't be up and doing outside. I'm glad I opted for building double width rows of raised beds in the in-ground plantings. At least the water has somewhere to go instead of drowning my seeds. Building these rows with a shovel and a rake was no easy job for one-handed me, but each 5' long row was accomplished. I could make two rows a day until all six were made. I'm glad I took the time. Gone are the days that I did six 30' rows a day... ten years ago. I'm thankful for this little garden plot instead of the old 1/4 acre garden. It's official. This was the wettest May in the history of this area.

I do have to say that living post stroke has been anything but boring. Every day there is something happening. Whether I fall, sometimes several times a day, or just preparing dinner are adventures. Attempting to make do single handed and not using my dominant hand to boot is challenging. I've finally quit trying to do trying to do something with my right hand first. It's only taken six years.  Not that I don't use my right arm and hand, but they now play a supporting role instead of a first response reactor.

The difference between learning and relearning

Living post stroke is a learning curve every single day as you try to regain your old life. Everything I try to do is part of this curve unless I've conquered it prior and have repeated it a dozen times or more. But isn't that true even if you haven't had a stroke? Yes, but living post stroke is relearning how to do it with impairments. Trying something absolutely new can be daunting post stroke. But it's a break from relearning. Sometimes, the frustration of learning something new is better than the frustration you get from relearning how to do something. I'm always on the lookout for these gems. Pinterest is a great place to see new crafty things I might want to try. I'm the type of person that sees something she likes and tries to make it. This year I tried spinning plarn to knit market bags. In the garden, I'm always trying a new plant or two each season. This year, it's tomatiloes. You never know what you can grow well until you try. In some small way, it makes me feel "normal" because everyone gets frustrated trying something new.

I've temporarily stopped working on the cookbook. I'm just too busy with the rabbits, garden, and orchard. I'll pick up working on it in the late fall after I put the garden to bed for the year. Next year's garden will be changing. Garlic and onions will be planted around the apple trees in succession planting because they'll keep pests away. I'll be planting leeks seeds in the fall as a first time crop to overwinter in the garden. Napa cabbages will be in the fall garden so all the ingredients for kim chi will come from my garden. Wohoo!

Nothing is impossible.

Sunday Stroke Survival: If All Else Fails, Punt

I know football season is over for another year, and punting a football is nigh on impossible living post stroke, but if the shoe fits you wear it. Hmm, wonder if I fit enough clinches in the first line? I also said the no-no word "impossible."<grin>

Jo, are you feeling okay? Actually, I'm fine and dandy so put your mind at rest. I just get frustrated at times and that's what this blog is about...working through frustration.

Everyone gets frustrated from time to time. But, as a stroke survivor, it seems to happen more frequently over the littlest stuff. Mainly, you are trying to  do something that should be second nature to you you've done it for so long before your stroke. Like walking or going to the bathroom, but all of that went out the window after your brain fart. Actually it's known as a brain infarct, but it's the many times where you go, "Oops, that didn't work right," and PFFT, it's gone." Thoughts evaporated just like the knowledge was never there.

Normally, before your stroke, you chocked it up to being busy or having too many irons in the fire. God forbid, you give age credit for these mishaps especially if you're under 50 to old fart's disease or CRAFT. You can blame it on old fart's disease, if your over 50. But now, after your stroke, it happens all the time and it gets frustrating to live with.

I often repeat what Thomas Edison says about creating the light bulb here.  You don't think he got frustrated a few times during this process? I'll bet he did. There are plenty of times along this living post stroke journey that I've looked at this and said, Edison was a braver man than me. But then, I realize he only tried 10,001 ways, I'm well above that number in attempts to walk unaided by my AFO or cane, and regaining use of my arm in almost six years of living post stroke. I still haven't found that one successful way of making them work like they are supposed to, but I haven't quit yet either.

Do you ever just get tired of adapting and just want to do? Oh, yeah! It takes a tremendous amount of time and effort to have to adapt everything to get anything done. I've always taken pride in my adaptability. I was able to turn on a dime to figure out a way to do something. With the starvation and blood killing off millions of brain cells, even my turns now take a minimum of three points to make a turn (physically and mentally). But, I thank God for this adaptability trait every single day. It allows me to still follow my dreams (more on this in a future post). In other words, I fall back and punt. Going with Plan B, is never anyone's first choice or it wouldn't be Plan B, would it? Even if it takes Plan C,D, or even F to get where you want to be, isn't it worth it? Whenever you strive for something more, there will be frustration. Think of it as a stretched Newton's Law of Relativity.

The thing that balances the frustration-doing point is desire. You have to want to do it. Edison wanted to create the light bulb. It didn't matter how many attempt it took him to him. He had the desire to do. So what are you that passionate about?

Coping strategies

• Those passionate things would be the things to focus on first. Count each little success until you achieve the big one. It takes a lot of dominoes to make a chain reaction of them falling in sequence. 
• Pick several passionate things to achieve. Work at each one. When one things gets too overwhelming or frustrating switch to another.
•  Give yourself some wiggle room and plenty of pats on the back along the way. 
• Look at things often retrospectively to see progress is being made. 

The comparison may surprise even you. The first time I used a knife after my stroke was awkward  and ineffective, but now I can cut anything. I just kept trying. Most times now, my fancy Swedish adaptive cutting board never gets used. Sure, the cuts aren't straight my cubes are even, but I get the job done with little effort. Retrospective vision is often overlooked. Don't do that! Allow yourself to give yourself pats on the back frequently because you've worked hard for them. Remember, if it were easy there would be no frustration.

Nothing is impossible.

Sunday Stroke Survival: Spasticity Update #1

When I saw Dr. Fox. He was my physical therapy doctor at Emory. All I can say positive about the appointment is two things... He never said, "It's the disease process," nor "It's the best it's ever going to be." In due course, I thanked him for this.




He agreed that all the PT in the world wasn't going to fix the spasticity. It would keep the permanent contratures of the tendons and muscles from happening. There is no simple fix for this. I really didn't expect one. Thanks to Dean at Dean's Stroke Musing and a couple other sites, I'm pretty well self educated on this side effect of my strokes. In fact, I've been told as much by several doctors. They simply do not have the time to stay current. I, on the other hand, have nothing but time to spend on research.

He did suggest continuing with the therapy and dry needling. I need the stretching. If it wasn't so awkward, I could do it myself. Alas, as much as I tried over the years, I just can't manipulate my body to get  a good, full extension stretch. These days I can carry about thirty pounds of grocery bags on my affected arm and not have it budge. That's how bad the constant spasticity in my arm has gotten. Even the therapist has got to do dry needling and stripping the muscles down before it will budge. But after all of that, my arm will move like pictured. It only lasts for the extent of the therapy and it's right back into the 45 degree angle. But the pain relief lasts for about 4 or 5 days which is heavenly. The charlie horse spasms which brings me to tears are reduced in frequency also. Should I be happy and grateful with only this?

So what's the next step?

I'm waiting once again for a functional neurosurgeon appointment. I'm back where I was in October. Maddening, isn't it? One step forward and two back. I should be used to this by now, but I'm not. After the appointment, I sat in my car on the verge of tears. It's so frustrating! My appointment time was 4PM in mid town Atlanta so not only did I do battle with the early rush hour traffic getting to my appointment, but now, after an hour with the doctor, it was the mass exodus of workers between their job and home. If you've never driven in a big city at rush hour, picture this. This is interstate driving with a 70mph speed limit. You are in stop and go traffic, and my best speed is 15mph. The sun is setting and all I can see in my rear view mirror is bumper to bumper traffic behind me for miles. In front of me is miles of tail lights. Six to seven lanes of traffic going one-way. It took an hour and a half to go 22 miles! The only good thing about it was I could take my eyes off the road and sip on my diet cola whenever I wanted. My cup holder is down between the front seats of my minivan. My right arm doesn't function to even hold the steering wheel while driving.

But I made it home safely. I guess I should've thanked God for that, but I was too upset to even think about it. The tears of frustration rolled down my cheek as I told Mel about the appointment. I'm back in hurry-up-and-wait mode again. Meanwhile, I still haven't heard a peep from  Shepherd's Center about an open spot for me to get in there. It's hard not to be angry or feeling like I'm being jerked around. It's hard not to feel like I'm being dumped on, or others just don't care. I've met a lot of caring folks along this journey. They all want to truly help, they just can't. They don't have the God given wisdom to help me. I know I'm not the only one faced with this dilemma. So should I be satisfied? Is it just my stubbornness? Lord knows, I've prayed long and hard about this. Should I just give up even though that's not my nature. You know, what the old Serenity prayer says...

I have a problem with the first line. No problem with the second line. The key is the third line that's a 50-50 shot with me. Hey, I'm being honest here. I think most of us fall in the same boat. At times the Wisdom is written in black and white. You've had a stroke and you are paralyzed. You work hard to recover what you can, and make adaptions to your lifestyle. Or, like me now, when I recovered so much only to lose it again to spasticity. So Courage isn't an issue in that respect. I'll try to do something half a dozen times before looking for an easier way or calling for help. In my mind, there's got to be a solution until God gives the notion that there isn't a way to do it. That's the kicker for me with the third line.  The wisdom is not always forth coming in a timely manner. At least to me. Remember me, I gotta have it now to be happy. I've gotten better about patience since my strokes, but I still have a long way to go. That's why I am in the questioning mode. Sometimes, God has to literally knock me in the head, "Hey child, I'm talking to you!" But that isn't always the case.

Everything I've read about spasticity says there is no cure. They also use the quantifiers like this may be helpful, moderately successful treatments, and research is ongoing. So the situation is not exactly hopeless, BUT there is no cure right now. And, I want it right now! I want it now before I regress to no recovery at all like I was just after my stroke. I want it before I'm back in a wheelchair. I want it now so the cycle of pain stops. It's a cruel punishment to give you back use, and then take it away due to a side effects of a stroke.

Do I sound whinny here? I'm in that cycle of grief again, where I'm angry most of the time. As I said before, grief never truly goes away. I realize the cause is just frustration. It will drive me nuts if I let it. Okay, then I have a choice to make. Do I want to drive myself nuts? No, not really. The people in my head know my quirks, but most other real people don't. I really don't want to step off that ledge. Okay then, what can I do about the problem? Well, the first thing is to step away from the ledge and decide to live beyond the frustrating bits. Sure they'll be back in the forefront again, but for right now, step away from the ledge. Whew! That was a close one. 

Now, take one step in the opposite direction. It doesn't have to be a huge one. Baby steps faltering as they may be. I've decided not to live in frustration. I'm going to take another step from the ledge. How do I do that? Distraction works. Firewood needs to come onto the porch. Now, it needs to be stacked. A load of wood needs to come in by the stove carrying two pieces at a time. Wow, two hours has passed since I took that baby step from the ledge. I sure don't want to freeze to death while walking away from the ledge into nutsville. Oh, there's that sweater I started knitting for Mel's birthday. The chickens and rabbits need to be fed. There's a new movie on Netflixs I wanted to see. Before you know it, the day has passed. I've been so busy living my life the frustration wasn't given a second thought. It doesn't mean that a new or continuing frustration point won't hit me square in the face tomorrow. It probably will. Remember, Murphy's Law is always waiting around the corner. But I survived the day and more than that, I was productive. 

Tomorrow will never come because tomorrow will become today when you wake. All's you have to do is survive the day. One day at a time. Each day, you make a conscience choice to step away from the ledge until you don't have to. With all frustration and grief, it begins to resolve with a conscience choice.

Nothing is impossible.

And Some Days, It Does Not Pay to Get Out of Bed

For every other Saturday, my children and I have been cleaning and going through stuff here.  This has been going on for over a month now. The personality conflicts and head butts have driven me nuts. But they are my children and grandchildren. They are trying to help old mom. But some days,  it doesn't pay to get out of bed.

There's a lot of stress involved on my part. I'm dealing with grief. I'm deciding what to pitch. What to donate. What to keep. What to yard sale. And, who wants what. Some of these are trips down memory lane that send me through the time machine twenty, thirty and forty years ago before I can decide. Other decisions are simple- if I haven't seen or worn it in five years- it goes. Some things I have to juggle back and forth between keep, sell, and pitch.

It didn't come as any big surprise that my oldest daughter could be difficult when asked to do something she deemed unimportant like cleaning my bathroom. I can't clean my tub. I won't say can't, but more like it would cause me too much hardship and pain to do it. It takes kneeling, or bending over in my tub to do it in an upside down fashion. Tubs get mighty slippery when using water and cleansers. Last time I tried, I pulled down the shower curtain on my head to avoid falling. I raised a nice goose egg on my forehead for my effort. I had to asked my oldest grandson to put the curtain back up. God love him. He's so special that he hung it back in place backwards. The pretty side (not waterproof) was on the inside. Anyhow, my daughter thought it was a menial task that wasn't as exciting as breaking down the spare bedroom so she took FIVE HOURS to clean it. It really took an hour, but all the complaining and griping filled the rest of the time. She does much better when it's just her and me. But this time her younger sisters were here too.

So I also had three of my grandchildren here. I thought one of the two that were not cutting the grass would help me empty my lower kitchen cabinets. Once again, getting into these takes squatting, sitting on the floor, or basically standing on my head to get anything out of them. I haven't opened them in over three years. I had gone out and gotten boxes just for this occasion. That didn't happen. My granddaughter and my #3 grandson saw a spider and that's all it took. They refused to even walk into my kitchen again. They comforted themselves by texting and FaceBooking themselves for the duration.

My #2 and #3 daughters tried to help me in the kitchen. But that pulled them away from what they were doing...breaking down the bedroom set in the spare bedroom. My #2 daughter mentioned the last time she cleaned my kitchen and how she was disappointed that I had let it get in such a state again. That was my limit for frustration. I told them both to go back to what they were doing.

Yes, the kitchen was messy and I knew it. The last time one of my children had even done anything to my kitchen was THREE YEARS AGO! I hadn't been doing anything in my kitchen except to cook meals, wash dishes I'd use, wipe down the counters, etc. I was only caring for my husband and doing everything I could do for a year and a half. Nah, that was nothing at all. I was sitting on my butt waiting for someone else to do it. Maybe my husband could have done what I couldn't. Yeah, right!

About that time, my #3 grandson came running into the kitchen, "Grandma, Grandma! Your water heater is leaking and your whole garage is flooded!" I sent my son-in-law out to check it out. Just what I needed, I thought. All those boxes in the garage are now soaked. It turned out not to be my water heater but a backed up drain to my washer machine, but I didn't know that at the time.

I went into my office and tears of frustration began welling up as I plopped into my chair. It really irritates me that I cry when I get over frustrated and mad because I really should yell and scream. It was frustration because of the limits my strokes have imposed on me. If I hadn't had my stroke I could do all of this myself. If I hadn't had my stroke I wouldn't be exhausted all the time. If my husband had not have gotten sick and died, I'd be happy wherever we were. If, if, if instead of the reality I'm faced with. Anything is better than reality when I get like this. Calgon take me away! Wait, my oldest is still cleaning my bathroom. So I sat at my desk reaching for tissues. Eventually they all went off to their respective homes. I was left walking around empty boxes that I had hoped to fill. My house is a minefield of fall hazards now. But I'll continue on one day at a time.

Finally, the spare bedroom is almost empty. This will be the staging area for the yard sale. I've got an air cycle, my NordicTrack, my neck traction device that was used twice before my husband couldn't help me any more and some really great items in there already.

I'm paying my youngest daughter's way home. Gas and miscellaneous expenses from Texas for her to help me full-time. Her husband is still waiting for his transfer to Alabama to come through. Ya gotta loved the Army. She'll be bringing my two youngest grandsons with her. She's already arranged for child care while she helps me. She's a whirlwind when she gets started. Her ADD/OCD behavior defaults from her traumatic brain injury works in her favor with tasks like this. Besides I win all the way around because I get to see her and my youngest grandchildren. Even though they were just here for my husband's death and funeral, we didn't spend much time together (not in the way we wanted to).

So soon all of this will be over. I'll be able to close on my property in November liked I'd planned. I feel like I've been standing still with a two-thousand square ft house sitting on my shoulders. But after this I'll be moving forward again. Worst comes to worst I'll buy a small RV and live in it until my house is finished so I can put this house on the market. It shouldn't take the painters and carpet people to do their jobs. The house down the street sold last week after being on the market a month. This is a very desirable neighborhood.

I've had some static from my older grandchildren about selling this house. It's the only place they've known as grandma and grandpa's place. I understand. I really do, but things change. Life is not stagnant. I've got to do what is best for me. They are mid to older teenagers now. One day when they have lived more of their lives, they will understand too. Whatever income I have left will have to see me through the rest of my life be it five years or thirty. All their dreams of coming back to live in this house may change too in twenty years. There are no guarantees. Do today what you can because you may not have a tomorrow. Take enjoyment and hug it close.

Don't get me wrong. I'm thankful for my children and grandchildren so I don't have to do this by myself. But sometimes, I'd rather stay in bed than deal with any of them.

Sunday Stroke Survival: I Can Do That, I Think

So as you read a couple Wednesdays ago, my rabbitry is growing by hops and bounds. The pending new addition of three rabbits got me thinking of building my own rabbit cages. Good rabbit cages are $65 and up. Especially for the larger 36x30 cages I wanted.I know because I bought one. The idea of buying three at one time was a huge expense even though it will last years. I might want to live in a tiny house, but my rabbits need room to be healthy.

As you well know, one of my favorite hangouts for instant how-tos is YouTube. I found a couple of great videos on how to make cages. I can do that! I thought. It wasn't rocket science only a cage to house my rabbits.I watched them a few times although it seemed simple enough. There are so many things I can't do since my strokes, I love finding things I can do well.

So I walked into my local Tractor Supply, looked for the wire I would need, and bought a new pair of wire cutting dykes. My old pair had pitted cutting edges after decades of use. It was about time. My tools work hard for me and while I take care of them sometimes they just become too old. I bought two rolls of 1"x2"x24"x25' wire and one roll of 1/2"x1/2"x30"x25' wire. The that's enough 1/2x1/2 wire to do 8 cage floors, but I have other ideas for the remaining wire.I only plan to build four cages. Why get 24 inch width instead of 18", because the remaining 6" will make the litter pan shelf. Wow, my brain actually works when given time to think. "Wait, why four cages?" For the babies to grow up in. I could be adding more later depending on the litter sizes. The best part was for four cages my cost was $75.

Why would I need a 36x30x18 cage for just a rabbit when a smaller one would work? We are talking about rabbits that are about ten pounds when fully grown.  I believe in treating all animals as humanely as possible in their captivity. I'm comparing it to a life as a prisoner in a cell. That's how I view my rabbits. Even if they are loved and cared for.  So I let them out to run around and be rabbits as much as possible. But, they would be a tripping hazard for me to let them out all of the time.

I came home with my rolls of wire and new dykes. Then I decided to make this a teaching experience out of it. Remember, I teach by hands on examples. This could be a learning experiment for a couple of my grandkids and my neighbor's son. I did have to make four of them. I already had the "J" clips and three sets of "J" clip pliers in a drawer in my hutch. By making them with three others would be an enjoyable past time for them also. Plus, it would be faster than making them one at a time. A couple hours tops. Then they could go with me to pick up the new Jr French Angoras. Junior angoras are between 8 weeks and 6 months old. We'd make a day of it. Possibly stopping for some ice cream on the way. I can do that because I'm the grandma. My girls have come to expect it now and have stopped trying to argue the point with me.

But my reasoning was not all together so simple. I had an ulterior motive also. If I got into trouble, I had extra hands to help me. I tend to run into trouble a lot with all the things I attempt to do daily post stroke because I'm always pushing my limits and trying new things. I challenge myself with my never say die attitude. Of course, some things are beyond my reach right now. But everyday, I try. Granted, my efforts have been more "safe" than it normally is because of being alone in my house now. I rarely push past the "safe" limits unless there is someone else to help like one of my teenage grandsons. Good thing they actually like coming over here. Now that I'm older, I'm not too quick to get in over my head. Although, at times, I would need an umpire to determine what's safe.

By daily not accepting my limitations as static, I can do many of the things most people don't believe a stroke survivor can do. Daily caregiving for a dying spouse being #1. All the other things like adaptive gardening, livestock care, and a host of other things I do on a daily basis following a close second. The first attempt almost always leads to a negative outcome. Think of a toddler taking his tentative first steps. He will probably fall quite a few times before he gets the rhythm down. If he stopped after the first twenty times, he will never walk, but toddlers don't. That's how I view accomplishing anything after my strokes.

You never fail until you stop trying. Albert Einstein said it first and I repeat it daily. But then again, I'm only human. I get frustrated with the trying. When frustration sets in nothing gets accomplished unlike anger. When you get angry enough you don't give up until you master it. But frustration is just the opposite.

When I get totally consumed with frustration of attempting to do, I stop trying. Not forever, just a day or two before I try again. There's not a day that goes by that I don't have to step away from something I try to do because of the frustration factor. Eventually I will learn or relearn how to do what I want to do. Some might say I'm just too stubborn and I'll agree with that. I rarely settle for I can't. Not if I really want to do something. Believe me that there are tons of things that fall into the category of really don't want to do. They aren't absolutely  necessary things. I would like to crochet again, but it hasn't become a really want to do thing like my knitting or my spinning yarn, or I would have taken the time to learn an alternate way to do it.

I actually put myself in the position of having to spin when I got my first angora rabbit. Sure, Buddy is a great companion and fun to have around, but any rabbit would be. He's an angora which doubles the care issues. He produces fur/wool for spinning every 3-4 months. If I don't remove it, he'll eat it and get sick or even die.  I really wanted to spin again. I started slowly with one rabbit (the toddler's first hesitant steps) to now having a rabbitry of soon to be six long haired bunnies (toddler learns to run). I thought 'I can do that, I think' in the beginning after my strokes. I've accomplished it with time  and built up enough confidence in my proving I can. I can operate a rabbitry post strokes without a doubt in my mind. I know I can. I've actually got almost two years of practicing 'I think I can' under my belt to take this humongous step forward. I'm fulfilling a pre-stroke dream too.

Don't give up your dreams of what your life could have become just because of a stroke. You can still do anything you want to do...except walk a tight rope. Well, maybe you could do that too, if you really wanted to. Just keep trying because...

Nothing is impossible.

Sunday Stroke Survival: Down But Not Out

Tis the season it seems that stroke survivors get fed up with their lot in life and just how frustrating living post stroke can be. I've heard this from several stroke survivors in the past few months. They are not alone. I'm there too from time to time. You get tired of just the struggling and adjustment you have to make to do anything. Does this ring a bell for you?

You want to scream at the world how unfair it is that you have to go through everything this way and it MIGHT change over DECADES. No, guarantees, but maybe there is some hope left after adapting your life after it has been turned upside down by a stroke or brain injury. Every passing year that hope grows smaller and smaller until not a glimmer at the end of the tunnel can be seen. That is the reality of stroke recovery after the 30 days to 6 months mark has passed.

But even with the hope still alive, the frustration of adapting and/or not being able to do everything like you used to pre-stroke, frustration and your moments and the pity pot can lengthen into despair, depression, and just get you down. It's like that old commercial, "Help, I've fallen and I can't get up!"  The sheer reality of "forever" hits you hard. It can incapacitate you just as much as your disabilities have.

I'm speaking from personal and my clerical profession standpoint here. Get help. Two years ago, I wrote about the grief process as it pertains to stroke. In fact, I did a weekly series on Sundays about for a month or so.This year, I'm dealing with the grief process in a double whammy dose. Don't believe for an instant because I know what the process is and can recognize it that I'm immune. I'm not. The betrayal of my body (my stroke and my heart) plus the death of my husband.

The thing about the grief process is that it never truly ends. The frustration and sense of loss will pop back up when you least expect it. Items have gone flying across the room in my sheer frustration at times for my not being able to use both of my hands. My sarcasm can drool off my tongue towards a person said something unkind or without thought. Even if they are only repeating what I said about myself. At times, it can send me into an internal rage. I rarely do external rages anymore. Who do they think they are? Can't they see I'm angry/frustrated/in pain? (you choose one) How would like to have THEIR brain damaged permanently and have to struggle like I do? Sound familiar? Yep, I've been there to. I'd be a zillionaire of I had a dollar for every time I've thought, "Geez people! How thoughtless can you be? And, I'm the one with the damages brain!" over the past three years. Actually for me, it's been more like 29 years since my accident left me a bionic woman or physically impaired.

When confronted with cold, hard facts like forever, you have two very basic options: to do or don't. Extend it farther is to be miserable and make everyone around you feel and experience your pain, or to put your big boy or girl panties on and decide that whatever it is IS NOT GOING TO BEAT YOU. Only you can make that choice for yourself.

I looked at my stroke as I have every other time I've been at death's door or faced with some impossible choice. This is not going to beat me down. I choose to look at every second of life as an opportunity not to be wasted. That's not saying I don't have my poor pitiful me moments, because I do quite often. I CHOOSE how I continue to live my life on my terms. I always say I'm a Christian by choice and grace. I've been exposed to many different types of religion in my past even atheism. I've even studied quite a few is researching a choice. I believe in doing research in all things before making my choice. Forewarned is ore armed so to speak.

Talking about or even venting is helpful and/or useless but a necessary evil. Don't be ashamed of doing it. But by the same token, don't let those feelings consume you. It's like fish. Fresh caught smells great and tastes wonderful. But let it sit around for a few days, weeks, months or, God forbid YEARS, and no one will be pleased or will very likely be repulsed by it.

I know you've heard the term, "Everything in moderation" and "To everything there is a season." It's about balance. I hear you literal types out there saying, "Yah, balance is my problem since my stroke! I don't have it and the vertigo is killer!" But I'm talking figuratively. It's a ying and yang type of thing. Good with the bad. What you can't do anymore and the things you can if you try. Keeping an open mind is critical. Look for possibilities instead of sinking in the quicksand of what was.

So as my title of this blog says, "I'm down but not out." I may be facing a mountain of struggles right now (and it may last a while), but I won't fail unless I give up. In the grand scheme of things, it's only a speed bump. Retrospective vision is a wonderful thing. In order to see what will come, you have to be open and willing to act on possibilities of what's to come. Yes, I may still but paralyzed and/or suffering with spasticity from my stroke for decades to come, but there is always the hope and possibility...maybe not. Everything changes over time. When I contemplate where I was in this journey 3 years ago, compared to where I am today...I'm better. No, I truly haven't regained all that much, but I'm thankful I can move my index finger and thumb although it's only butterfly kisses of movement in my affected hand. I'm also thankful my husband is not here suffering like he was.

Life is not lived in a vacuum. Everything happens for the good, okay, or the bad, or devastatingly horrible...but where there is survival there is adjustments, adaptation, and faith that tomorrow will be a new day and a new beginning. If it seems like you are spinning your wheels like a truck embedded in mud up until its axle...you are not looking hard enough. Take a big breath in and just observe what is happening around you. You can sit on the sidelines and watch or you join in. The choice is yours to make.

Nothing is impossible.

Sunday Stroke Survival ~ Writing After a Stroke

I think we are finally out of the woods for the time being. Until the next time. My husband's congestive heart failure and pneumonia are now a thing of the past and I'm not in constant vigilance mode. This morning he took his oxygen off and walked to the bathroom without getting deathly pale or severely out of breath. He even took the trash outside and came in only mildly out of breath. His color has gone from ashen gray to a ruddy, pale pink again. I'm so thankful for all the prayers.


I've been going around and round for the past few months and not accomplishing anything towards the forward progress of Don't Get Your Panties in a Wad. It is frustrating writing after a stroke. Sure, I can blog, but writing a book is different.

The muse just aren't with me when my focus is scattered in too many different directions. I used to call myself a master juggler. Not any more. It's tough tossing one ball in the air and catching it.

Could part of my problem be fear? Possibly. With two agents chomping at the bit trying to sign me up for this book and talk about an auction, the old fear of have I still got it comes into play. I've been analyzing everything as to why I've stopped writing this book. Maybe Alex's Insecure writer's group would help, but that's not the only reason.

As I mentioned Wednesday, I had the opportunity to speak with a teenager doing her volunteer time in therapy before going to college for a PT license about writing and publishing. Did you know they have to log 100 hours volunteer in a PT/OT center before they can be accepted into school? I didn't until my stroke.

Anyhow getting back to this young girl, when she found out that I was a previously published author she lit up with excitement. She was writing a novel herself. Then we started talking about writing after a stroke. She couldn't understand what the difficulties were. Of course not. It's all about your point of view and experiences. There is no way a 17 year old girl is on an even playing field with me having grandchildren her age and recovering from a stroke.

So I broke it down for her.

• In writing you plot out your stories. It takes sequencing and linear thinking. Both of which were impaired with my stroke. Although I'm working at it, there is still a deficit.
• In writing you need command of the language you are writing in. I lost all fluency in languages except English, my third language. Spelling went out the window as did all but simple grammar. When before your stroke you were fluent in eight languages and you are left with one, it can be quite disheartening. Not to mention you are not even fluent in the language you are now speaking. This is evident by all the red and green squiggly line in what you are typing. It gets really irritating when you think you used to write 50-100K words in three months without either.
• In writing you need to be able to focus and not be scatter brained. Now with my "Dyslexic/ADD" any interruption is the death of whatever you had in your mind. That's me now since the stroke. 

So what's my problem now? I hit 37K words before this writing stoppage. It should be easier now that I've partially recovered what I lost, right?

Wrong. I managed to write so many words because I really did not have many demands on my time. Now, I'm driving, gardening, cooking and my husband's care issues has escalated. Marry that with the low energy levels that plague me, it spells disaster. My muse and desire to write hides under the bed whimpering like a dog during a thunder storm. When I ask my neurologist when can I expect my energy level to return to somewhat normal, I get the depends  and every stroke is different answer. At first she said after a year, but I'm there now with no return of my energy. If you don't know something, just say you don't know.

I still need a nap or two to get through the day depending on what's going on. Then I'm in bed sleeping by ten even with the naps. We're not talking about my old twenty minute power naps either. I'm talking a hour at least possibly three. Now admittedly, I am no longer leaving the therapy department with the vague sense of nausea and falling in bed on arrival home anymore, but on therapy days I'm done for anything more strenuous. I do my gardening, chicken and rabbit care before therapy because I won't have the energy afterwards..

In the old days, I used to build myself up to get more energy. Do one more set of ten or twenty in exercises, but a stroke is weird. The build up just doesn't work. Granted I'm better than I was a month after the stroke but less than 25% of my norm which isn't good. I watch my grands play nonstop and wonder the age old thought of if I could only bottle it, I'd be a millionaire. It's not like pain is draining my energy because the Botox injections knocked most of that out. 5-Hour Energy drink be damned. It doesn't work in this case. All it does is give me heart palpitations from too much caffeine.

So when will I finish this book? I dunno. I'm biding my time because eventually it's got to get better.

Nothing is impossible with determination.

Tuesday Tumbling Term~ Frustration and Fixes

The word for today is frustration. This is a carry over from my pastor's blog, but it fits very nicely here too. I can't plagiarize myself only repeat what I've already written. :o)

frus·tra·tion
noun
1. act of frustrating; state of being frustrated: the frustration of the president's efforts.
2. an instance of being frustrated: to experience a series of frustrations before completing a project.
3. something that frustrates, as an unresolved problem.
4. a feeling of dissatisfaction, often accompanied by anxiety or depression, resulting from unfulfilled needs or unresolved problems.

We all experience it at some time in our lives. That feeling that no matter what you do or try it just isn't working. The want to pull your hair out, want to runaway and hide until its all over. You know that feeling, right?

You can get frustrated with things like your job, your writing, your life, your situation, your finances, you're not succeeding, and people around you (some you don't even know). There are a thousand things in this world to frustrate you and trip you up. I know I do periodically like my rant last Saturday.

Notice one thing that is repeated in the above paragraph? It's Y-O-U or a variation of it. It's your frustration. It's all about you and things not going the way you want it to. How you feel about things. How you interact with situations around you. The only one who can change that is Y-O-U.

Isn't that the same thing as self pity? No, it's different. No, it's the same thing. So get off the pity pot already somebody else wants to use it!

I hear you. I've spent considerable amount of time on the pity pot myself with trying to get a handle on the feelings accompanied by my stroke and life in general. I've had a pretty hard reality setback with my stroke, but there are stroke survivors who have it much worse than me out there. My grandmother was stricken with seven strokes throughout her life. It gradually took everything away from her until she was almost in a vegetative state before she died with the seventh over five years in the progression.

Now for the fix, or some ways to stop frustration. This worked for me and it was years in the learning. God is teaching me patience with this added malady.

• Step away from what is frustrating you. Even if it is going into another room.
• Do something else not related to what you were doing. Continuing to punish yourself by keeping at it just makes the frustration worse.
• Remember it can always be worse. For me when I feel myself slipping into a rut I'll remember a friend who is in worse financial, physical or emotional straits than me. You'll smaller after feeling frustrated by such petty things that frustrated you in the first place.
• Find the root cause of why you are feelings frustrated. It may be something deeper than what you are frustrated with at the moment.
• Make your expectations smaller. As a writer after a stroke, my mind is not functioning right. I couldn't figure out a way of combining all the experiences into a chapter book like I previously wrote. Solution- simplify the book into a collection of short stories.
• Focus Smaller. As a writer with a goal of a 100K word novel in front of you and staring at a blank page, focus on a sentence, a scene, or a chapter end instead of 100K words.
• Simplify. Don't try something that takes fifty gazillion steps, if you've never done it before. Think of a jigsaw puzzle. When you were putting one together for the first time you didn't start out with a 1000 piece puzzle or a 3-D. You worked up to it.
• Allow yourself to fail attempts. Recognize that the first ten times you are not going to get it perfect. Learn from the failed attempts and make all new ones.
• You are not alone. Take a look around you. There will be others.
• Be kinder to yourself. Think of all the muscles it takes to frown, and how blotchy your face looks after a crying jag. How your screaming and yelling scares the neighbors, and how you will have to replace whatever you break.

I've just given you ten ways to stop frustration in its tracks. I don't expect you to do all of them at one time. Make a conscious effort to do one a week. In ten weeks you will be frustration free. Well maybe not totally, but you will be better armed against those feelings when you feel it start to well up inside you.

So are you feeling frustrated now?

Keep Writing and loving the Lord.