Sunday, April 8, 2018

Sunday Stroke Survival: A Matter of Faith

Oops I hit publish before I entered the date.

 It being Sunday and I feel like preaching a bit from my living post stroke computer. So if you do not believe in God, He has this Word for you. Please don't post negative comments here. Send me an email. Thank you.

It's hard to believe I'm approaching the six year anniversary of my first stroke. What a journey it's been so far. And yet, I'm still have faith of a full recovery. Huh? Why is that? From reading your blog, you've had nothing but problems since your stroke. How can you still believe God loves you? He allowed this to happen to you. How could a loving God do this to you? Why hasn't He healed you yet? You're a minister. Surely your testament of healing would bring hundreds to Him. I read it almost every week in emails.

You've all heard that "God works in mysterious ways." What's so mysterious? Have you asked Him? Yes, repeatedly. He never answers me. Sure He does. Are you listening? Are you in a receiving mode of brain activity? Maybe, you aren't crossing your left eye, sticking your tongue out of the right side of your mouth, while wiggling your ears with your head cocked at just the right angle. Sometimes you feel like you have to do some asinine antics or rituals to make sure God is listening or it seems that way. You don't, by the way. Just talk to Him as you would a loved one or close friend. That's what He really wants. Do you only talk to him when the stuff hits the fan like a petulant child? I'm guilty of being a petulant child at times, but not this instance. Are you a nagging wife where God is concerned? Are nags ever listened to or a whiny child?

For me, God foretold that this would happen to me. I was early in my walk of faith. Although I received many blessings, I also had some pretty hefty travails. This continued for decades as I grew in faith and trust. Each time the travails got harder and harder. I might have wobbled from the blows, but I remained faithful as did God. Sounds like a parent teaching a child to swim, doesn't it. Believe me, I didn't understand at the time I just rolled with the punches. Each time I got stronger and stronger in faith. I never doubted the the rewards (blessings) with the triumph of the travail.

Meanwhile, I thanked Him for His mercy when it was over. It's darn right impossible to see blessings through a storm. It's only in retrospect that most can feel how He carried us through the storm. Even the faithful can be shaken up one side to the other. I've had my own inklings with this over the decades.  I'm only human. It's allowed. Just don't make it a life long ambition.

I've had more travails, over the my decades of faith, than anyone should be allowed to go through even at birth, but God had a plan for my life. He would allow me to be His mouthpiece. I used the phrase, "Scorched, but not consumed" in one of my novels. That's it in a nutshell. Through my travails, I've been scorched around the edges, but have not been consumed by them because of my faith. When I tell others what I have done and what I've endured in my life, they are amazed. They can't believe that so much could happen to one person and she still wears a smile, and professes faith. But I do, not always, but 98% of the time.

It wasn't until 2015, that someone gave me the name of my calling...a martyr. Like Job (thank God I'm not Job) in the Bible, God is using me to show His love and faithfulness to others in the present day. Those are some mighty big shoes to fill.  Does it sound like I'm bragging? Believe me, I'm not. Nobody would want these shoes, I don't. He uses me as an example. Remember, I believe in leading by example. I can walk the walk and talk the talk. My perspective is focused, Been there (Am there). Done that (Going through it). Can I show you the way? How I cope? I never force feed anyone. God opens doors and windows even if it's just a crack you push through.

The Lord is my shepherd. May the love and peace of the Lord be with and upon you.

Nothing is impossible.

Sunday, March 18, 2018

Sunday Stroke Survival: Survivor's Lament

If there's one lament about living post stroke that I hear the most it's "I just can't do nothing since my stroke!"

Be it a stroke or any life altering event. The first thing everyone faced with it, their first inclination is to say this and throw up their hands in frustration. True? True. It's probably one of those human nature things that I was graced to be standing behind the door when it was passed out.

Yes, I'm blessed to have been standing behind the door on a lot of human nature things that plague so many. By the same token, I was probably jumping up and down waving wildly when it came to impatience and stubbornness. "Pick me. Oh, please pick me. I gotta have those! Give me a double helping!" I can see God in heaven shaking His head and going she's going to a handful. He wasn't wrong. <grinning> But He also blessed me with creativity, logic, problem solving, and a healthy dose of common sense too to balance the equation. Is it any wonder I call myself the queen of Abby Normal? By sheer nature, I'm a contradiction in terms. But, I digress (once again *sigh*) from today's topic.

I always say, "Your attitude needs adjusting." Instead of "Get your head out of your backside," or " get off the self pity pot because someone else needs a turn." But that's basically what I mean. You've heard of the fifteen minutes of fame? I propose you apply the same approach to frustration and self pity. Okay, maybe thirty minutes. Your attitude is about the only thing you have control of after a stroke. Unless you have PBA like me from my stroke, but that's another thing entirely.

Basically what I'm saying is your focus it twisted. Unless you really want to feel worthless, down trodden, and alone. Does anyone really WANT to feel this way? I know. I know. We all know someone it seems to want to live like this, but I'm assuming you are not them because you are reading this. Take stock of what you can do.

Maybe you lost a lot with your stroke(s). I know I did. The laundry list of what I've lost, maybe forever, is huge. The inability to hold a job is the biggest for me because I loved my ministry and writing life. It takes a strong will to look at this list and  say I give up, but I don't. My first winter, after my stroke, without knitting or spinning wool, was devastating to me. I'd only spent over thirty years doing it. The first Spring without a productive 1/4 acre garden was just as bad. Did I wallow in self pity? Honestly, I did a little, but I was also researching how to do these things I loved with my new impairments. Just the act of researching helped me off the ledge. It was doing something rather than giving in to my plight. (Remember the stubborn trait) By the next Spring, I had knitted little Easter bunnies for each of my grandchildren. By the year after, it was knitting elegant shawls for my family. Now, almost 6 years later, I'm spinning and knitting one handed all winter long again.

I'm gardening too. Adaptive gardening techniques was also something I researched. I may not produce as much as I once did, but God's wisdom and grace has given me a smaller core family to provide for.

The list of pros and cons are still skewed because I'm living post stroke. But I truly believe in the "Nothing ventured. Nothing gained." saying. Just like before my strokes, the sky is the limit for what I can achieve or learn to do again. If I truly want to do something, I'll figure out a way to do it. Sometimes, the attempts are thumbs up, thumbs down, or thumbs neutral, but that doesn't stop me. I weigh the importance of my success against time, frustration, ability to repeat the process, and a long list of other things just like all the "norms" out there.

So when hit with the survivor's lament of "I can't do nothing" buck up. There's a lot of things you still can do, if try and adapt. Don't sell yourself  short. Take stock and figure out how you can.  You can do it. I have faith in you. All it takes is the first baby step of wanting to do it. I say baby step but for some folks it's a huge one. It's taken over a year of talking about knitting one handed for a lady in my group to say, "Teach me." That's okay. She's doing it.

Nothing is impossible.

Sunday, March 11, 2018

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, March 4, 2018

Sunday Stroke Survival: Still Dealing with Broken Bones

The mini saga on my broken foot continues. I've spent the last couple of weeks dealing with how to prevent this happening again. And maybe in the process, getting my foot to heal faster. Try as I might. I just can't be totally nonweight bearing on my poor foot. My lifestyle, home, and vehicle are not set up for it. I want to say at  this point, I'm so over this!

In the morning, I don my sock and AFO. At this point my foot looks normal. I hobble to the bathroom bearing weight on my heel build up. Little, sharp twinges of pain shoot through my foot as I rise from the commode telling me that my foot is still broken and it wasn't a bad dream. Because of not wearing a shoe with my AFO, my foot inverts with each step as much as the AFO will allow. So begins my day.

I hobble to my rollator sitting where I left it the night before...about ten steps from the bathroom door. I'll one legged roll it to my computer.I'll turn on my little electric heater. I'll read and answer my emails, scan the news, answer YouTube comments and play a couple of games on has two daily challenges in various games so I'm not constantly playing the same games which is nice.

I use the heater to take the morning chill off me. If I'm still chilly by the time I finish my computer work, I'll one legged scoot to the wood stove. Try as I might, I can't make a fire sitting down. There's paper to crumble, an intricate pattern of various sized kindling to lay, and wood to be lifted into the side of the wood stove. It's just barely 7 AM by this time. If I'm chilly, Mel will be freezing when she gets up. While the kindling and wood catches, I'll still be running my personal heater.

I'll sort through my morning and afternoon medications. My medications include Lasix, a potent diuretic.For the next three hours it's a race to see if I make it to the toilet in time. I was slow before living post stroke, but now it's ridiculous. It's a 50-50 shot whether I make it or not. I've gotten to where I keep an extra pair of panties, pants, and socks in the bathroom just in case. Yes, it's gotten that bad. The really bad part is none of the bathroom doors are wide enough for my rollator to fit through so I'm up walking again.

I'll fix Mel's pot of tea and breakfast while I'm up fixing mine. Thank God I make in advance breakfast and freeze it. I made a month's worth of pancakes, French toast, and waffles before I broke my foot. We also do a "big" breakfast for dinner about once a week: bacon, grits, eggs and toast. All I have to do each morning is heat it up and prepare the fruit. Like other people drink coffee in the morning, we've got to have our hot tea for the caffeine jolt. At night, it's a pot of decaffeinated Earl Grey.

After breakfast, I'm chomping at the bit to do something. I haven't seen the rabbits in a month! The rollator does not like the straw bedding in the rabbit barn. Same goes for the chickens in their coop. I've chatted with Little Red and Houdini (Hoo di hoo) as I come and go on one of my various trips out and about because these roosters are still free ranging to give the hens a break.

But I'm nonweight bearing so I spin plarn or wool, or knit for a while until I'm bored with it, and then, it's back to the computer again. And so goes my days.

That brings me to my latest to stop my foot from breaking again because of the spasticity and my AFO. I went to my brace maker. She cut the heel build up down by half. My contracted Achilles heel pulls a bit more but I can live with it. She also put a bar into the padding to keep the ball of my foot from striking so hard with each step and built up the side of my AFO so my inversion isn't so bad. She told me I need a new AFO. This one is only three years old and Medicare and my insurance only pays for a new one every five years. Caught between a rock and a hard place once again. She also suggested putting a rocker sole on the bottom of my shoe on my affected side. It would cost $40 and my insurance doesn't cover it. I'd have to leave my shoe with the cobbler for a week. It's a good thing that I bought a second pair of shoes. I've got one in the shop now. The second pair will go in when the first ones are done.

standard AFO
After my brace maker made the adjustments to my AFO, I was praying hard for a solution to my AFO problem. Although I could charge it to a credit card, I didn't want to. It's another bill added to a fixed income that I had to pay. Well, my prayer was answered. We'd fight the rule (again). But instead of my doctors starting a letters to get it qualified like last time, all I'd have to do is get my doctor to document the changes to my foot because of the spasticity. I could do that! I might mention here that my brace maker, the shoe place, and my PCP are all 30 miles away in a neighboring town. So I've been up and driving around too.

I've just have to hang on until May when I'm scheduled for my rhizotomy. If that alone doesn't markedly reduce my spasticity, I can do Botox again. It's now been nine months since my last injections. More  than enough time for the Botox to get totally out of my system. Maybe, it'll work better like when I first got them. At least that's what I'm praying for if I need Botox again. Maybe, I can again be making forward strides in stroke recovery again.

But this will be a busy year for me and doctors as if it hasn't been already.
At my cardiologist's office, I was greeted by the news that I now have three aortic aneurysms. One in my abdomen and two in the femoral arteries (in each leg). As if three bad valves and an electrical problem in my heart weren't bad enough. The arteries are bad enough that they have to be fixed or they'll rupture killing me. That's slated for sometime this early summer.

My yearly blood work showed some areas of concern mainly my kidneys. The tests showed moderate kidney damage/disease. So, I'm being watched for that. I know the culprits- A bad family history and the drugs I have to be on. I can't do anything about either, but pray. You know if it wasn't for my body working against me, I'd live on this Earth forever. But that's not going to keep me from trying. God willing.

Oh, and about my foot. When I go to bed at night, I pull off my AFO and sock. I'm greeted by my red, angry cartoon foot. You know the one where the swelling is so bad it looks like a balloon? Below the spandex support is rounded with swelling. My toes look like Vienna sausages wedged in those little tin cans. Well, I try to be nonweight bearing.

Nothing is impossible.

Sunday, February 25, 2018

Sunday Stroke Survival: How to Grow a Stroke Support Group

True to my New Year's Resolution in 2017, I became more active in my area's stroke survivor's support group. My old group was huge  (over 200 members on the books). Needless to say, when I got here there were only about ten members. No more than one or two couples attended a meeting besides me.

Don't get me wrong, the group's coordinators try, but for them it's a add-on to their jobs as social workers and patient counselors at the hospital where they work. They are juggling like mad. So enter little old me who was previously involved with a very active group. Of course, this isn't a very large community either. But I know strokes and brain injury survivors exist here  also and more than 10. According to Wikipedia, there are 43,000 folks here. Granted there were only 295,000 strokes worldwide last year. (WHO stat) It might be the 5th largest cause of death, but there were survivors too just like me and you.

So you look for a support group after your stroke, hopefully you find a robust one like I first did. Or you find one with not much to offer. That does not fill your needs at all. You want communication with other survivors, You want to know that you are not the only one going through all of this. You want a good source of information. You want to find out what resources are available for you. You want a bonafide stroke support group. But yours isn't or the leaders are just going through the motions because of time constants like mine is now. How do you get what you want?

You grow a stroke support group.

Things that may stop you in your tracks and seem overwhelming at first. Remember, what I discussed with you about overwhelming a couple of weeks ago?  How do you get stroke survivors to know you exist? How to promote a stroke support group? How to keep it interesting? How to get people to attend? There are a lot of questions you may ask. The main ones being what can I do about it? Can I change it? Is it set in stone or will the people in charge allow you to help? They may honestly, like the way the group is. It's less work. Here are some steps to get you started. If all parties are agreeable. It was what I was going to do the first part of this year before I broke my foot.

Offer refreshments

It's only common courtesy. I started small the end of last year by providing refreshments at each meeting. It was simple finger sandwiches, munchies, sweets, and drinks. Our last meeting was before Christmas so I picked a Christmas themed layout for the spread. I made Christmas cookies, cup cakes, fudge, and chicken and egg salad sandwiches. Of course, this wasn't only for the stroke meeting but Christmas gifts for my neighbors too. For drinks, it was Dollar Store finds...cola, diet cola, a lemon-lime soda, and water. A little bit for every taste.

Since we meet every two months, this meeting was shrimp salad and deviled ham sandwiches, raspberry cheesecake brownies, heart shaped cookies, red velvet cupcakes, and my sugar free, low carb truffles. It was close to Valentine's Day after all. So, it was red and pink colored everything. Again, Dollar Store to the rescue for drinks. It was doable even with a broken foot.

That takes care of the members we already had. On average, we have less than ten at any meeting for right now. I always make enough for 12 just in case. Whatever is leftover goes to the floors for the nurses at the hospital where the meetings are held. It was something I could do and was good at to try and boost attendance.

For our next meeting in April, it's April showers bring May flowers themed. I haven't decided on the menu yet. But you can bet that flowers will be involved.  I'm a former chef and caterer so planning food events is one of my fortes. I realize this is not everyone's. Simply drinks and cookies will suffice. Maybe the hospital cafeteria can help. If nothing else, it's free food for attendees.

Keep it interesting
Next was getting together with the powers that be. I wanted to run all the ideas for possible speakers to the group. Figuring five speakers a year talking on subjects that interest stroke survivors and caregivers. (one meeting is set aside for planning) Some possible topics pharmacy, Medicare, disability resources in the county, physical therapy, a psychiatrist/ psychologist for depression/grief counseling, urologist, and heck I have a long laundry list of folks as possible speakers. Have something interesting to learn. How many times have you read, said or thought, 'It's not rocket science!' At our stroke meeting in February, we had a speaker who is a stroke survivor and a rocket scientist.

Getting new members 

The easiest way to get possible members is to invite a stroke survivors that you meet when you are out and about. Word of mouth is fantastic for letting other folks know you have a group. Other referral sources include doctors, hospitals, nursing care facilities, assisted living facilities, and so on. For this approach you need to have a few things. Business cards with a contact number or/and an email address. A brochure is useful because you can leave a handful at each spot. Flyers and/or postcard sized info blurbs will also work. They are easily designable on a home computers and printers to begin with to hold down costs. That way you have a silent salesman working. Be sure to replenish them every month or so.

Where to leave promotional items...
  • Doctor's offices- PCPs, neurologist, heck, any doctor office, but be sure to ask first. Be sure to drop some off with the social workers at neighboring hospitals too.
  • Physical therapy locations- every stroke survivor goes to these especially in the beginning. Remember, not only the hospital based departments, but the private ones too.
  • How about your local drug store?
  • Most stores and restaurants have a community board. Be sure to have thumb tacks and place several.
  • Visiting new stroke patients in the hospital. Check with your local hospital for permission.
I'm not saying you have to hit all of these spots at once. Just carry some with you when you go to these places. If you as a stroke survivor or caregiver goes to these places, you can bet others do too.

Even after doing all these things, you may not get more members immediately. I didn't join a support group until a year after my stroke although my speech therapist mentioned it every visit. But I knew one existed. The problem for here is that no one knows about the group. I have a big mouth where a good thing is involved. Or, even something that could be great with a little push.

There doesn't have to be a grand scheme to grow a stroke group, but there are methods that work. It won't get any worse with no effort, but you aren't getting the support group you want and would like  to have either. All's it takes is one person. More if you can get it. Just like with planting flower seeds. You hope to have gorgeous blooms. But before you have them a little work is needed. You have to prepare the soil, plant the seeds, give them water, and maybe a little fertilizer before it can grow. This blog is the seed and some basic information on how to grow it like a seed packet. The effort is yours.

 Getting attendance

The other issue which may confront you is survivors who cannot get to meetings. Public transport for the disabled is not available. They have no full time or part time caregivers that can drive them to a meeting.  Can a current member pick up one extra person or several before the meeting? This is the easiest solution to get bodies at a meeting.

Form a buddy system within your group. Where each member is on a call tree for another member. In this way, you find out what is going on with other members and it's not all on you. Delegate.

Future possibilities

Later on down the road, your stroke group can offer crafting or pottery classes. I do a loom knitting class for ours. Maybe yoga or Tai chi classes. Extra speech/communication get togethers. Special holiday events/outings or dinners in between meetings. The possibilities are endless. But first, with a little TLC you have to grow your stroke support group.

Remember, enthusiasm is infectious. Share your vision and thoughts with others. A shared vision has power.

Nothing is impossible.