Sunday, September 16, 2018

Sunday Stroke Survival: Making Plans for 2019

Is it too early to be planning my 2019 to do list? It's almost October.

All this waiting for a Baclofen pump was a waste of time. I saw the neuro- physiatrist this week. I'm not an optimum candidate for the pump. So the pump is a big NO GO. He did suggest having my contracted Achilles tendon lengthened instead. Less invasive and a better outcome is predicted. He said surgery followed by therapy would strengthen and straighten the leg. It would eventually get me out of my AFO since I had the ability to dorsey flex and evert the foot prior to the cessation of Botox.

They'll set up the appointment for me, but it means more waiting. In the beginning, I'll have to do Botox again for the spasticity, but I should recover the use of my leg and foot with time and intensive therapy. I need to build the atrophied muscles up again before that can happen. So nothing new on that front except I'm facing a surgery I did not expect. I'm just over it all.

If the recovery takes as long to heal as when I ruptured my Achilles tendon on my functioning side, it'll be a year. I was in an air boot for 53 weeks prior to and after the last time. I've tried walking with the air boot instead of my AFO and it doesn't work, but I'll leave that for them to figure out.

But can you really blame me? I was so excited and now, I want this done so I can move forward. I want to be out of pain. I want to be able to move again. So in the meantime, I'm making plans for the coming year. Actually, I'm making adjustments to my five-year plan for the homestead. I've adjusted this original plan so many times, I should just write up a new one.

According to the original plan, we should be 75% self sufficient going into our third year since I  moved here.  Hahaha! Yeah, right. In reality by my calculations, we're closer to 25%. Does anything go according to plans? It's more like the diagram. It's never a straight line. If it was my living post stroke would be hugely different than what I've been experiencing now.  One month post stroke, I had recovered my
speech, at least to make myself understood. I rarely spoke gibberish unless I was over tired. I was regaining full range of motion of my shoulder and arm. I could even move my thumb and index finger however slightly. My leg was strengthening to the point I was investigating a Walk-Aid to get out of my AFO.

If determination was the deciding factor, I was headed for a full recovery. Sure, I'd have some limitations from my stroke, but I'd have one of the lucky few that recovered after my ischemic stroke escalated into a hemorrhagic stroke who recovered almost all within the golden six months. But that's not my story. I wish it were. I'm on the squiggly  line path to recovery.

Now, I'm more patient than I was six years ago. So my strokes did accomplish something other than be a bane of my existence. Living post stroke is more fun than a barrel of monkeys...not! I used to love that game. I think I managed to link was 10 or 11, but kept trying for 12.  Living post stroke is similarly a nonstop challenge as neurons in the brain play leap frog around damaged areas to restore some sort of function. You may recover 11 (or less) out of 12 or rarely get a 12 out of 12. Nobody can predict the outcome.

My grandmother for instance, survived stroke after stroke. Seven in total over a 20-year period of time. After her first one at 76 years young, the only impairment noticeable was the AFO and cane she used.  She was even well on her way to getting rid of her cane and AFO when she had the second one. Her arm was a little bit weaker, but she still gave fabulous hugs. Each progressive stroke took away more and more ( not without a fight) until she was bedridden, blind, and speechless at the time of her death at 95.

I come from strong stock. So in spite of major surgeries in the coming months plus recovery time, I'm making homestead plans for what we want to accomplish in 2019. I'm also not kidding myself about the time to recover from the Rhizotomy. The doctor said a year of intensive therapy will only get me most of the way back to the way I was before my spasticity reached the higher levels of immobility. I'm figuring 2-3 years. I'm old and tend to heal slower. Was it really only two and a half years ago that I was wiping counters and tables with my affected arm? It seems so much longer than that, but that's life dealing with excruciating pain. When I count 6 out of 10 on a pain scale as having a good day.
Cara @ 8 weeks old

Onward to homesteading plans...
The homestead plan for 2019 includes the angora rabbitry growth. With the addition of Lil Albert (buck) and Cara (doe), we now again have a diversified gene pool to start our pedigreed, English angoras program. I'm still looking for a fawn colored doe to be purchased in 2019 also. That will give us a firm gene pool to breed with for the optimum outcome (babies) that are well mannered (grooming), excellent woolers, and the right temperament. They will also be show quality which will command a premium price point for litters. At one point, I considered keeping 15 angoras in house. I'm settling on 10.

These are high maintenance animals. With seven now, it's almost the limit of our time. Each rabbit needs socialization at least twice a day for a minimum of fifteen minutes each. They need their free play time in the rabbitry which needs to be supervised daily. Does and bucks separately for obvious reasons.  Who wants to be stuck in a cage their whole life? Especially when they have a 12x28 rabbitry to binky and scamper in, and fresh greens planted for their munching pleasure. They are groomed twice a week. It could be a simple blow out to remove humidity from their coat and a slicker brush through for tangles (15-30 minutes each)or the works (shearing, toenails, ears, eyes, etc- 3 hrs with breaks). During our one on one time, we are checking for runny noses and eyes, their droppings and urine, ear mites, fleas, and injuries.

Any troubling signs, the bunny is whisked into quarantine (smaller cage in the back porch) for closer monitoring. Mel and/or I will be with them except for a few hours each day until they are dead or recovered. So you can see why fewer rabbits is a necessity rather than the vision of 15 in house rabbits.

We will be building and stocking a separate grow out area for meat chickens. The plan is to do lots of ten birds two or three times a year. That way we don't overload the freezers, canners, pantry, and me with a dizzying amount of work at one time. Butchering two birds a day is my physical limit. The birds only need to grow for 12-13 weeks old. Killing, butchering and processing ten birds over two weeks is easily accomplished goal. So a small grow out pen will work. I may just build it myself. Why should Mel have all the fun working with power tools?

Growing our own poultry has become an imperative with all the avian viruses, hormones, antibiotics, and salmonella found in commercially raised chickens in the market today. This wasn't so important to us before Zaycon filed for bankruptcy and closed their doors. Sad to say, it's a sign of the times we live in now where family owned businesses are closing after decades of doing business. In the grocery stores, organic meats are readily available, but they are cost prohibited. Growing our own is the cheapest alternative.

We'll be planting more fruit trees and bushes/vines in the orchard in 2019. We have started fruit tree seeds and are in small pots although these won't go into the orchard until they are much bigger in 2020.  The current vegetable patch is complete. It should give use many years of produce with minimal effort. The orchard area has one more year of heavy labor.

But in 2019, we will be clearing and terracing another 1/4 of an acre. Three quarters will be designated for grain/hay/straw growth(lower tiers). The remaining cleared area will be set aside for future tiny house placements (upper tier). We figure to to start with and another one or two for the future. At least one of them, mine, will be set on a foundation rather than wheels to make access easier. It's 8x12. The only change I would make is switch the full sized bed
for a twin. It would give me more floor space. Drawer under the bed would give me ample storage and I'd be able to put my lift chair between my bed and the kitchen counter and a small desk/dining table off the bathroom side. At 102 sq ft of living space, it's all I could want or need. If I bought it on a trailer, it could be pulled by my van. This particular model has solar panels on the roof making off the grid capable. There's no room to fall. LOL Only mine will be my total expense plus things like the water, electrical and septic tie ins if needed.

By opting to build this on  a foundation, makes it easily accessible, All it would take is a paver stone patio and concrete to slope it. Speaking of paver stones, that's another project for 2018-2019. I brought from my old place a concrete mold for a walkway. The old 20x24 deck and stairs original to Mel buying the homestead is in hazardous shape. The boards are rotting and splitting. It was never sealed after it was built. We are dismantling it. In it's place we'll be building a 4' deck by the doorway and new stairs leading down to a new 20'x24' patio area. I'm thinking of embedding small river rock into the top surface for texture and color.

We do a lot of cooking and stuff three seasons a year outdoors. It will take a bunch of bags of concrete to achieve this but it will be worth it. We can do as little as one bag at a time or ten there's no hurry making the patio. Nor is replacing the landing deck and stairs, we've got the decks and ramps on the other side that was built this year for outside access to the porch. Dismantling the old deck is a priority. This will be the do until the snow flies project at the end of this year. I don't think the wood can be reused, but we'll see.

We'll be building another pallet staging area for firewood storage (for 1/2 a cord of wood at one end of the patio. This will be handy for the grill, smoker, fire pit, and the wood stove. This is a get to it when we can project for 2019-20.

I also want to set up the goat pen area beside the barn/workshop. Or, at least map it out and laying in supplies. But it's definitely a 2020 project. As you can see, plans are being made for 2019. Whether they are completed or not remains to be seen.

Nothing is impossible.

Thursday, September 13, 2018

How Do You Help a Chlld Overcome Fear?

James @ 6
My six-year old grandson learning a hard lesson in reality. He's at an age where he is understanding more about things like tragedies, catastrophic events, etc. like 9-11 which anniversary just passed. His school did a memorial. His young mind is starting to put things together too.

He watched the replay of the twin towers being hit by airplanes. He's flown on commercial airlines before. His Daddy flies all the time for work. He is presently in Afghanistan. His mother has a tripped planned for visiting her sister in Alaska next month. Their family has several trips planned in the next six months to prepare for their relocation to Ireland next summer. James is now terrified of flying.

He watched as people fell to their deaths from the towers. Even though his grandfather died, it was three years ago. These deaths of the people were horrific, not peaceful as his grandfather's was. The real concept of death and war hit him although he understood that people were gone.  His Daddy was in a war zone. His Daddy! The man that chose him to be his son unlike his brothers who were born of him. His Daddy loved him so much that he went to court to make him his so nobody could separate them ever. Yes, for a six-year old, he understood much.

 Jennifer, my daughter, let him watch the news that night. It was part of his social studies homework. The top story was about an American base in Afghanistan being bombed. There were no survivors. James, being a smart kid, knew what base his Daddy was attached to. It was his Daddy's base camp that got hit. He was inconsolable.

Jennifer immediately got on the phone and called her beloved, the reassure both of them. No answer. Jennifer called the Wives hot line. Busy. Then, she waited for her phone to ring or a knock on the door. For eighteen hours, they knew nothing. Her phone finally rung. It was David, her beloved. He and his buddy were reassigned the day of the bomb and had flown out of the base the morning of the blast. Between the flight and the check in procedures, he couldn't call sooner.

It was all too much for this little boy to handle. We've talked to him and reassured him, but he's severely traumatized. The fact that I'm in Georgia and he's in AZ isn't helping. All I can do is love him, from afar. She set an appointment for him with a child psychiatrist. In the meantime, she's cancelled her visit with her sister. The idea that he could lose both parents in plane crashes is too much for his little mind can handle or needs to cope with right now. Jenn is erring on the side of caution where  her son's long term health is concerned, I can't fault her for that.

Jennifer and David 2018
While Jennifer and David are not officially married. their wedding to make it official was planned for June 2019. In Arizona, they are considered common law married because they have lived together as man and wife for four years. They've since called off their wedding because of the current events. They will get married in Ireland when David has leave in March. She calls it eloping in Ireland. I think it's sound thinking. I'm happy for them and wish them well.

Why Ireland? Jennifer's new job as executive pastry chef starts in July. David's corporate headquarters is there. David dual citizenship (Ireland and US) and half of his family is there. Jennifer is sort of Irish by way of my beloved. Why not? Besides, it'll give me a chance to use my passport. A flight there is actually cheaper than a flight to Arizona.

Sunday, September 9, 2018

Sunday Stroke Survial: Beat Depression wih Forward Progress

Depression can be a killer if you let it be. Sometimes, you don't realize depression is taking over your life until you are in full fledged depression, or you look back on the episode like I have this week. Depression comes in waves. Gentle at first, and then grows in size and strength until the waves engulfs you to the point you feel that you are drowning. It washes away self-confidence, self-worth, and just about all determination or effort to change before you realize it.

I was almost to the point of being engulfed because of circumstances. Ministers are not exempted from depression. We are human too. Remember a couple of weeks ago I posted about fear being a liar and a thief? You can substitute "depression" for "fear" here. I'd forgotten to do this and was sinking fast without truly recognizing it for what it was. I was in a sticky, smelly quagmire of  despair. It happened so slowly. First one thing then another compounded it, then another and so on for months. The creeping nature of this depressive bout could easily be discounted for other things like chomping at the bit waiting, or even chronic pain. I ignored the fact that I was going into a depression   Of course, these factors played heavily into my depressed state.

Yes, I did.
Finally, I recognized it for what it was. Yes, there were extenuating circumstances like still not hearing from Emory and heightened chronic pain, but I woke up and put on my big girl panties.

I remembered I'm not alone in this fight which was feeling like someone had stole my lollipop mid lick. I had allies in my corner. I'm not discounting God, but He had my back also. Who do you think rang the alarm bell that woke me up in the first place? I had hand picked my doctors also, hadn't I? A simple phone call from them was all it took to get a rope to pull me out of the quagmire of depression. In other words, steps towards forward progress. Nobody speaks doctor like doctors. I come close, but it's not the same.

Suddenly, there was a light at the end of the tunnel and I could see the end of it. Hope was restored. Whether the Baclofen trial works or not, there is forward progress. Once the trial is over, we move forward. Whether I expect it to work is besides the point. My ultimate goal is the Rhizotomy for my arm. Relaxation of my leg can be accomplished with my increased medication and Botox if the Baclofen trial fails. It may not work as well, but it works for 45 out of 90 days. It's an option. Going this route takes longer to get results, but I get results. My major pain source is my arm.

It's amazing what a little hope does to depression. Almost instantaneously, you are doing the Snoopy dance of happiness that depression can't stand. Sure there is a long road ahead, but with a renewed spring in your step it seems doable. Depression melts away. The same goes for living post stroke. Being active in your recovery, no matter how long it takes, you have a ultimate goal in your mind and soul. It doesn't mean that you sit by the wayside and wait. You take the steps (exercises and repetition) to reach your goal while living your life to the best of your ability while you wait to reach your goal. Yes, I'm back touting the same old lines again.

Life abhors a vacuum. Depression is an equivalent to a vacuum. While depressed you are standing still. You are listening to the liar and a thief who is telling you, you can't. I'm telling you can. Can't never could.

So get off that chair and get to it. Make some forward progress today and get off that slippery slope of depression. One small step leads to another. You have to claw and crawl before you can walk or run. When facing living post stroke, we are all infants who stand holding onto something. May we continue to have the courage to let go and run.

Nothing is impossible.

Sunday, September 2, 2018

Sunday Stroke Survival: Snatching Victory from Defeat

When it comes to failures living post stroke, there are many. I fail to accomplish tasks all the time even after six years of living post stroke. There's not a day that goes by when I don't fail at doing  something I try to do. In part because I challenge myself each day to regain some ability or other. Zig Ziglar said...
"If you learn from defeat, you haven't really lost."
 I was first exposed to Zig in my marketing classes at college. He specializes in the area of personal development training. He also said...

You don't have to be great at something to start, but you have to start to be great at something.

Even before I was a stroke survivor, old Zig confirmed what I'd always believed.  I often refer to this here as snatching victory from defeat, and how do you know you can't do something unless you try. You are never truly defeated unless you give up.
Yes, it's very frustrating challenging yourself with a new or different challenge each day.  I usually start my day, after prayers, with something I relearned to do well. It bolsters my ego for the trial to come. Plus it reinforces the relearned skill. Whether it's beating the computer at a game of Canasta or baking bread. It's a tactile operation that puts my mind and body unto motion for the day's new challenge. 

For several months now, it's dealing  with painful spasticity and walking. Now,  I'm more apt to fall which I'm back to doing at least once a day. All it takes is an invisible piece of lint on the floor and I go boom. It feels like the early days of walking after my stroke. The 30 degree inversion of my affected foot in spite of my AFO might have something to do with this also. But I don't quit. I pick myself up and keep going. 

There's no denying that I'm finding it more difficult to get up these days too. So much so that I asked my neurologist for an MRI to see if I'd had another stroke. But, I've been there and done that already. And yes, I did.  It's just means working hard again to regain what I recovered back. My 3 cm ischemic/hemorrhagic stroke damage area has grown to 6 cm. Another set back...what's new. We figured that was partially to blame for me being on the pity pot so long too. It skewed my attitude, but it's getting back to more my normal every day. My right side is weaker again except for the spasticity. The spasticity only increased with the new brain insult.
Just my luck.

I did get my dry needling and stretching this week. The pain is more tolerable now. She actually had to needle  the base of my skull, neck, and trapezius muscles  because they were so strained from compensating for the spasticity in my arm. Just try carrying a 7 lb weight around 24/7 and see if it doesn't affect all your other muscles also.

Oh, my neurologist calling Emory worked! My appointment with the neurosurgeon is September 13th. I'm doing the Snoopy dance of happiness since they called.

The waiting is over almost. Granted, this is only the first meet and greet with the physiatrist who will do the trial for the Baclofen pump, but it's a start of the action plan the functional neurosurgeon laid out in my initial visit with him back in May. If the trial is successful the pump placement can be scheduled within a month. It's been a long time coming.

Nothing is impossible.

Sunday, August 26, 2018

Sunday Stroke Survival: Time to Get Off the Pot

I've spent enough time on the pot to have a nice red ring around my bottom. I've allowed myself too much time on it. The increase in my medicine has helped somewhat. I'm sleeping six hours at night again. It's time to get up and go.

I've enlisted my other doctors to push Emory into getting dates for me. Lord knows, I've tried everything short of physically camping out in their offices. I can ask my physicians to do this because they like me and are doing all they can to help me get back what I've lost. They have watched my decline with much sadness. It's worth it's weight in gold to have doctors like this.

Having physicians like this is no accident. I recently had to change all my physicians with my move to north Georgia two years ago. These people didn't know me from Adam except those specialists that my previous specialists referred me to like my neurologist. I searched, asked for referrals, and interviewed each candidate (doctor) that I would be using.

I approached each in the very first appointment as a employer weeding out candidates for a job. I am paying them after all, aren't I? I paid for my SS Medicare while I was working. I also pay monthly for my BCBS supplement. I also pay out of pocket each year for deductibles and co pays. It makes sense, right? I outline in the "interview" what has been done and tried by others, what worked and did not work, and what I expect from my health care provider. They can either accept my terms of employment or not be hired.

Open discussion of options is an imperative. They've got to listen as well as talk. I also let them know that as my employee, they can be fired. When it comes to my health and well being, this is a necessary evil. I take nothing for granted and don't expect them to either. We have to all be on the same page. I expect all my doctors be aware of what my other doctors are doing, when, and why. They are my team and I am dependent on them. I expect them to have my back as they have mine.

Finding this special breed of doctor is no easy task. So many have a "God" or "Captain of the ship" complex. But choosing your health care provider is your choice and responsibility in the US. Too accept anything less should be against your basic principles.

I'm simply tired of waiting on Emory. I'm tired of the run around I'm getting and it's time to enlist others to help me in this quest.  Even if one or two doctors accept the challenge to help that doubles my chances of actually getting a dates I need. My cardiologist and neurologist agrees. It's been five months worth of waiting and they have worked with me to keep me functioning. They are also getting tired of this waiting also and are running out of options.

My physical therapist is reaching out to other therapist to see if there is something (anything she hasn't tried) to help me to no avail. She's reached her limit also. Twice a month she asks me if I've heard anything. She is honestly getting frustrated too. When we first embarked (first appt with Emory) on this journey, she just found out she was pregnant. She's due next month. Now I'm hoping the surgery date is while she is out with her baby, so I won't have to have another therapist other than the one at Emory.

I'm thinking about joining the YMCA. I am weakening so much from pain/AFO issues imposed inactivity, that I'm thinking aquatic exercises might help. I got the idea from Barb Polan's blog.  She does aqua therapy at her therapy sessions. Water offers resistance and buoyancy.  When I lived in south Georgia, the beach was a stone's throw away, but here in the foothills, there's nothing close by. Even so, the Y is 13 miles away via  the interstate. My physical therapy office doesn't have a pool in their practice. The cost is $42 a month (senior price), but I should be able to afford that and I can also use their weight room for cycling and leg exercises. Monday-Thursday aqua aerobic classes and on Wednesday they have chair strength and stretch class. The classes are early in the morning so it shouldn't interfere with much. The more I think about it, the more I think I should make the call. I owe it to me. I may wait until the first of the month and wait for Emory to call. That way I can start fresh with a new month.

So it's time to get off the self pity pot and go...
Nothing is impossible.