Monday, June 18, 2018

AFO Update

As y'all well know, I've been having issues with my new and old AFO. It's been a maddening adventure trying to get the new one to fit without causing pain when I wear it longer than three hours.

I just have too active of a lifestyle even living post stroke. I suppose it would be different if I was the type of person that didn't strive to be active and push for recovery of what I lost. But, that's just not me. If nothing else, I'm true and totally honest with and about myself.

The main problem is two fold. The new AFO straightens my foot and ankle the way it should be, aka normal, and my old AFO doesn't do this, but causes stress fractures. It's a no win situation. I strongly dislike those types of situations. It feels like losing, but really it's not because I walk better with the new AFO.

I had another appointment with my orthotic specialist. This is going to be an ongoing thing until the Baclofen pump can be installed and adjusted. Every month, I'll be making my way into the "big" city for consults and adjustments until then. After much discussion, we decided to keep doing minor adjustments to the AFO over time because it is actually doing what it is suppose to do. This new AFO will look like it's been through a war just like my other ones by the time they are finished. It's a good thing they are not charging me for these appointments, but I still have to pay for the gas for the 60+- mile round trip.

I'm still waiting on a date for the Baclofen trial. So I'm stuck trading out AFOs when I can't tolerate one or the other to get the things done that need to be done. I'm still doing more sitting than I need to be doing. I guess we all do what we have to do even when it involves stopping in the middle of doing something to change out braces.

It looked similar to this shutterstock pic
I'm glad I bought two pairs of shoes last year too. I had a major blow out of the sole of my affected side's shoe. The entire tip to the mid sole non slip cover came loose. It flapped with every step. Talk about a fall waiting to happen. While I was in Gainesville visiting my orthotic specialist, I dropped off the shoe at the shoe repair shop. They were the ones that did all the adjustments to my shoes. Because it was one of these adjustments that blew out, there was no charge. Of the six years I've had to have specialty shoes, I've been extremely blessed not to have an issue like this before. I'm also thankful that the sale of my lower Georgia property allowed me to buy an extra pair of shoes so I wasn't having to try and walk with my shoe like this.

The news about the new AFO is not all bad. The new AFO is easier to put on and the hard plastic shell is narrower than my old one. This is a major plus in the summer. It slides in and out of my shoe easier instead of having to use a shoe horn like the old one which is also an advantage. But most of all, it's holding my foot in the proper alignment. My back is ever so grateful.

I have developed arthritis in the first MP joint of my affected pinky toe. The numerous x-rays I had on this foot during the fractures healing confirmed this. The pain and swelling isn't  helping matters in pain threshold department. In case you didn't know, the pinky toe is in constant use keeping your balance with each step. Having sustained several crushing injuries and fractures to the foot in the past, and now the AFO, I'm not surprised. Even with the strap across my foot on the new AFO, the toes move and are pulled out of alignment with the spasticity. The new AFO straightens my foot for a more evenly distributed weight across my foot so this joint is now getting an even greater workout. This relatively new diagnosis is a kick in the pants.

It's s-o-o much fun getting older.


Sunday, June 17, 2018

Sunday Stroke Survival: Social Isolation

A fellow strokee, Megan Whitaker, wrote about social isolation recently (post can be found here). It got me thinking. God help us all! Jo's been thinking again.

What the heck is social isolation?
Wikipedia says...
Social isolation is a state of complete or near-complete lack of contact between an individual and society. It differs from loneliness, which reflects a temporary lack of contact with other humans. Social isolation can be an issue for individuals of any age, though symptoms may differ by age group.
Okay, I understand that. As someone living post stroke, I can see where other survivors might feel this way. Your regular friends from work really can't understand where you are at now. Your whole world was turned upside down. You may be still battling paralysis, PBA (Psuedobulbar Affect), difficulty communicating,  or a whole host of difficulties that prevent you from being with others as you used to. This even includes family members. You feel alone even in a crowd I feel like many times being both a stroke survivor and a widow. I feel like I have two strikes against me from the get go. Nobody on Earth could possibly know how I'm feeling or goes through my head unless it's another stroke survivor and a widow too.

As a widow, you are faced with a whole bunch of issues if you live in the same place as you did with your husband. The first question everybody asked is how are you doing? I could answer honestly and say... that my beloved and better half has been ripped from my side. Even after almost three years. There is still a gaping wound and I don't believe it will ever heal. But I don't because that's not what they want to hear. I simply respond that I'm doing okay. This is the major reason I moved six hours away and don't go home unless I have to. Being there is painful. Yes, I'm a coward, but it's my way of coping. This is a form of self social isolation.

I push myself as a person living post stroke to be the best possible me I can be. As a Christian, I believe God heals. Why He hasn't healed me yet to full recovery? Well timing is everything. I actually bring more people back to Christ being this way. But even so, I believe in social networking. No, not FaceBook or any other internet social group although I'm a player in those circles too, but real one one one communication. I belong to a stroke survivors support group, I'm active in various community outreach programs and I talk in person to groups. Yes, even with my aphasia.

Even within my stroke support group, I feel a sense of social isolation between me and others who are lucky enough to have no visible signs of a stroke. It's not jealousy or envy. I just feel excluded from the recovered parties within a support group where no one is worse than me. Not that I'd honestly wish that on anyone else.  My participation is a deliberate choice to keep social isolation at bay.

But everyone these days feels a certain amount of social isolation.  Every time my children texts me instead of calling me, I feel a sense of this. Emails across vast distances draws you closer but pushes human contact farther away. I've got several hundred, if not a thousand, "cyber" friends, but only a few that I have met eye to eye with. Isn't this also a form of social isolation? We hide behind devices instead of actual human contact. I understand all the excuses why we don't develop this social skill more. We're too busy. Are we really not as busy than our grandfathers? I think not. They were in fact busier. Oh, just get with it, Jo. That's just the way things are now. Maybe I'm just an old fart, but I mourn the loss of human contact. A lot can be said for touching someone else's hand in support or compassion. Giving an actual hugs instead of a smilie or emoji. 🤗 Today's society is kind of a lonely existence. A kind of semi imposed social isolation.

Let's make a change.

Nothing is impossible.

Sunday, June 10, 2018

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, June 3, 2018

Sunday Stroke Survival: The End is Nigh!

As y'all know, I'm a Christian minister. For the past forty or fifty years, I've heard...

"The end is nigh!"
"Biblical prophecies are coming true at a rapid rate."
"The Seals are breaking."
"The Rapture could be tomorrow!"

It's all true statement, and then again, it isn't. Remember one very important fact. God's time is God's time and it's His. I hear y'all asking what does all this have to do with stroke survival? Give me a minute and I'll explain.

Nobody can accurately predict what will happen and when. Sure you can read Nostradamus' predictions and correlate present day happenings to his predictions. The same is true about stroke recovery. But it's all relative. Have you ever been to a World Expo future exhibit? We should be flying instead of driving, or teleporting by now based on it exhibits in the past. I'm not poo-pahing Christian beliefs or the Bible. I'm just standing on the Word when it says be ready. I am to the best of my ability spiritually. This bride is ready for her groom. In reality,  can go either way at a drop of the hat-stay or go, do or not do. It's all an educated guess based on hindsight. I'm addressing predictions (prophecy), expectations, being prepared, and fulfillment in this blog.

Living post stroke, I am also prepared. I'm expecting to fall. I also expect me to pick myself back up again. I'm expecting to have yet another stroke. My grandmother had seven before the seventh one killed her. I expect to die. There's nothing I can do about that. We may be living longer than our predecessors, but we will all die. Any choice we make at a given time is either right or wrong in hindsight.

Take me for example. My cardiologist says I can have the rhizotomy procedure without having my aneurysms repaired first. I'm in no danger of them rupturing in the next year or so. That's his prediction. I'm bowing to his wisdom and expertise.  Whether the cardiology team at Emory are of the same opinion is unknown at this time. But even with this prediction, I'm prepared to go either way. It doesn't hurt to have a second opinion either. It's only my life hanging in the balance.

There's a saying, 'any day above ground is good one.' Any day above ground needs to be lived to the fullest even if there is no tomorrow. I fight for whatever life I have every day. I'm broken and can't be fixed right now. That doesn't mean I don't have hope for a better outcome in the future. It doesn't mean I won't go ahead with the rhizotomy even with the dangers and hard work needed afterwards. Even if the end is nigh, I still have to live through today. The Biblical Rapture hasn't happened yet and I still have to live until it does. Tomorrow may be a different story. But every morning I awaken and start each days anew. It isn't tomorrow yet.

The cartoon I pictured at the beginning of this blog says, "The end is near" and "Are we there yet?" What the usual answer to the last one, "No, not yet." Can I be excited by what's to come? You bet. But each day is a new chance to try something I haven't tried before or gain a small piece back of my ability BS (before stroke). Until someone says, "We're here!" I'm going to keep on keeping on.

Nothing is impossible.


Wednesday, May 30, 2018

Words to Live By After a Stroke or Just Because

I ran across this quote the other day and thought it was a good mantra for stroke survivors too. They should be words to live by living post stroke. Too many of us forget it can always be worse.
"I am grateful for what I am and have. My thanksgiving is perpetual...O how I laugh when I think of my vague indefinite riches. No run on my bank can drain it, for my wealth is not possession but enjoyment."

 ~ Henry David Thoreau
This struck a cord with me and I'll tell you why. As stroke survivors, we lament on what we've lost opposed to what we have. Granted, you may think that your life may have been better prior to your stroke. I know I do. But even setting aside that thought, are you wasting time living in regret or what could have been?

Are you enjoying your life now? Are you really living it? I know my answers to these questions. It's a resounding, "YES!" I'm not only living my life post strokes, but I am reveling in it. This thought struck me as I was planting tomato plants in our garden a couple of weeks ago. The day was beautiful. I looked up at the canopy of new leaves on the trees. A gentle breeze caused a calming rustling sound as I dug into the straw bales and nestled each plant into their new homes. Buzzing bees darted to and fro pollinating the flowers and collecting their nectar. It was one of those sunny days you would want to sit on your porch swing and just enjoy. I was thinking, life doesn't get any better than this. I'm enjoying being on this earth to experience this.

Yes, I'm still a stroke survivor. Yes, I still have physical impairments.  But moments like these are meant to be enjoyed to rejuvenate the soul in what God has provided. Reveling in the awesome rebirth of life after winter. I noticed the clover that is rampant in our yard. This year, the three leaf wonders are half a dollar sized. They are huge with large puffy flowers. My rabbits love them. I'm too busy pulling up huge clumps of them for them that I'm not looking for a four leafed one for luck.

I tend to notice clover more in remembrance of my Irish descent husband. At my old homestead we grew clumps of red shamrocks just for him to enjoy each year. We never found a four leaf in the red variety, but we were still lucky to have each other and happy. But beyond that, clover enriches the soil as ground cover. Farmers pay good money for seed to do what God supplies naturally here.

So if you aren't living your life post stroke enjoying the glory of being alive, stop and look around. Enjoy the splendor that still is yet for you to own and enjoy. It is said that little things that means the most. It's true. Stop focusing on what you have lost and enjoy what you have each day. It may not seem like it is enough or the same as before your stroke, but there is little enough enjoyment experienced by "normal folk." Grab what you can, whenever you can, and do it often. You'll be richer for it. It's a wealth you can't take to the bank, but it's free if you just look.

Nothing is impossible.