Paranoid Much?

 

Note- This post has nothing to do with strokes or living post stroke. It's my personal opinion. I am not making a political statement

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I'm not a gloom and doom type of person. I guess you can figure out that about me if you've read a few of my posts. The news is filled with posts that would make anyone paranoid, right? Coupled with fake news, it's enough to make a sane person a little bit crazy or concerned at the very least. While I am concerned by recent events, I've moved myself into spectator mode. I don't spend my waking or sleeping moments swelling on it. I stand on my faith to do this. My "Daddy" in heaven has control over all in my life. He promised that I'd have a shelter, food, and clothes on my back. Through my decades on this earth, He hasn't failed me. It's a blanket coverage. So why should I be more than concerned about all the goings on outside my immediate realm? Things just have a way of working out in the long run.

My roommate, Mel, is not like that. She refers to folks like me as those who "drink the kool-aid," or have blinders on. Amazon, Google, Microsoft, and anything made in China are evil. She refuses to use them anymore. She just sits in front of her computer each day ( a HP running Windows) and scours the internet for like minded people who believes as she does. Isn't this type of behavior like "drinking the kool-aid" also?

I received a package from Amazon last week, a set of pans to make my air fryer more useful. She hit the roof. Then she read the box and the products were made in China! It sent her into outer space. I spent the better part of a hour half listening to how she was trying to make my stroke addled brain understand how wrong this was. How Amazon and China were huge devils bringing about Revelations. How China hates us so much that they not only sent a worldwide pandemic nut they are trying to poison us with their products too. 

It's not that I don't understand her, but really?! There's nothing wrong with my mind although I do get confused at times. Yes, I buy American when it's possible but honestly, they usually have Chinese made parts in them. There isn't electronics that doesn't have some bit or piece of them not made in some third world country or other. America hasn't been in production mode in a very long time.  It will take time to fall back into it. I really don't think it's even possible to do across the board anymore. Price point matters also especially in these economic times also. The dollar doesn't stretch as far as it once did. Now that I think about it, did it ever?  It seems the same complaint no matter which decade you are living through. I also believe in shopping locally as much as I can. I do not ask where individual components come from. I'm just not that obsessive about it. Maybe I'm wrong.

I pray about the welfare of others. I pray about major decisions I have to make in my sphere of influence. Within that sphere, I'll fight injustices after given all sides of the story as a logical choice. But I do hear all sides of a story not just one side or the other. Do I care about election fraud, stock market wrangling, and any one of a thousand issues being reported? Yes and no. I reserve the right to choose my battles. Let's face it honestly, how much influence do I have in the afore mentioned areas... not much. All that I can do is pray about it and hope that saner heads prevail. So that's what I do. After all, there's no greater powers than faith and hope.

It Seems Like Just Yesterday...

 It seems like yesterday I was telling you about my Baclofen pump trial. Wait a minute, it was just yesterday.What a difference 24 hours can make!

In a flurry of phone calls this morning, I am now set for the surgical implant of the baclofen pump THIS Friday!!  It's it fabulous the way God works? What I thought two weeks ago was an impossibility is now going to be a reality in a few days.

I have even better news, hold onto your hats, I'm going to be part of a spasticity study between neurology, orthopedics, and the rehab team for post stroke intervention.

Dr. Au Young, God bless him, was chatting with some colleagues from orthopedics over lunch. They were telling him about a new multidisciplinary study they were undertaking regarding post stroke spasticity. They wanted to know if he'd like to come on board. He jumped at it. He told them that not only was this a close to his heart interest that he also had the most excellent candidate for them. Of course, he was talking about me. He went on to discuss my case with them. They in turn got excited about me too.

I've been open to ANY possibility to help me recover from my strokes and the damage that they caused for almost seven years now. My first call this morning, 9AM, was from Melissa, Dr. AuYoung's assistant. She wanted to know if I wanted the pump. I told her yes. The next question was I available for surgery this week. I answered in the affirmative. She said she'd she'd pass the message along  to Dr. Au Young.

Within an hour he called me back. I could hear the excitement in his voice. He told me about the other orthopedists, the study, and what they wanted to achieve. He hoped I didn't mind him talking about my case to them. It was a clear HIPPA violation, but done for our mutual benefit. I forgave him. I told him discuss me away if it would help me regain a portion of my life. He asked me a few more questions and we hung up. Both of us thoroughly excited for the hope and the possibility.

He called back within an hour telling me that he had an opening this Friday as his first surgery. Yes, it will mean, for us, rising at 0 dark 30 to make the drive into Atlanta. Mel can just drop me off and drive home. She shouldn't run into any huge traffic snarls because the major flow should be going into Atlanta not out.

I'll be in the hospital for a few days at a minimum so I'll be spending Easter there. That's okay. Christ arose on the third day to bring hope to all mankind. I'll be spending Easter with a renewed hope of another kind. This one personally  for me. It seems kind of appropriate. The fact that it'll be done prior to my birthday, makes it even better. Now begins the rush to prepare for surgery.

Nothing is impossible.

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.

credit

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 Stroke Survival: I'm Still Crazy. Where Are You?

Guess which shirt I'm wearing today? <grinning> I love this shirt. In fact, I've got three of them in different colors. Don't I know I'm living post stroke? Aren't I limited by disabilities? Aren't you a sexagenarian? Oh quit. Get your mind outta the gutter. It means someone in their 60s.
 
I can say "yes" to all those things. But I have one ruling principle...
I ain't dead yet!
 So I'll continue being crazy enough to fulfill my life and challenge myself every day.

I mean once the fat lady has sung her song. That's it. No more dreams. No more plans. No more nothing. You are bound for the hereafter. You have no choice in the matter. Until then, the choice is yours. 

There is something called hope.

... that you will recover from your stroke.
... that you will be out of pain.
...that you can move a limb or a piece of paralyzed limb.
... that God will give someone the wisdom so nobody else goes through this.
... that you get to spend another day enjoying the laughter of children echoed by your own.

      ... to do one thing you hadn't done before.               

... to experience life another day to the fullest.        

What is your other option? 
Despair. 

I love this image for despair

there is nothing left to live for...
you can contribute nothing...
I'm just a burden to everyone...
you are no longer a productive member of society...
you are worthless in your infirmities... 
why bother doing anything because no one expects you to...
X, Y, or Z will do it for me better and faster...
X, Y, or Z owe it to me...

 I can tell you from personal experiences that despair gives nothing back. It's a killer of any joy you might have. Despair is a spirit killer. It does nothing for you or anybody else. Everyone has moments of despair. But that's just it...they are moments. They don't chose to stay there. Or shouldn't. In living post stroke, you will visit despair quite often. Recovery is fraught with failed attempts and dashed hopes. Just read a few of my blogs over the past five years and you'll see that I'm not immuned to despair.

Or, are you somewhere in between? At times, I feel like a yo-yo because I go back and forth between these two emotions. That's okay. Most times, I constantly chose the hope side. It actually is a choice on how you live your life.

May I always be crazy enough to
...to test boundaries of what I can do.
... try new things.
... figure out how to redo the things I used to do.Especially what I loved to do.
... figure out how to succeed, no matter how many attempts it takes.
...remember the distinction between attempts and failure.
...keep despair down to moments.
...failure is not an option so long as I keep trying.
...there are no limits, just opportunities.
                           ... God is the creator and inspiration and I'm just a copycat.
                           ... God is the spearhead and I'm just the rod. He points the way and I follow.

Nothing is impossible.  

Sunday Stroke Survival: Snatching Defeat from the Jaws of Victory

I know. I know. I got the title backwards, didn't I? But after a stroke and living post stroke for more than five years, it sure feels like it. I hear you all now. "Whoa! This doesn't sound like the Jo we usually read." But just hold on a minute. You know that's fixing to change. Or at least you hope, right? Or you are sighing and saying, "Jo's on the pity pot again."

I'm in this weird mood, so be forewarned. I can get very retrospective at times like this. What's the reason behind this mood, you may wonder. I've been people watching again...mostly Mel.

What we thought was a sprained wrist turned out to be a broken one. Her dominant right wrist. I've been watching how she is handling it. She's never had a serious illness, broken bone, stitches, or anything medically wrong with her in all her life. That's almost sixty years folks. Other than depression, she's led a charmed life until one night she tripped over her TV tray. As she puts it, "I couldn't break my wrist by doing something cool. I had to do it by doing something stupid."

But really, isn't that always the way?

So I've been doing a comparison between how we each handle the one handed life. We are kindred spirits and alike in attitude. So it's been interesting. Nothing shows true attitude like how you handle adversity. Of course unlike me, she has use of her fingers and can pull the splint off. She does this more than she should. Especially in times of frustration until pain causes her to put the splint back on. She's a grown woman, I should only advise her once on what to do. After that, it's her choice. So I've been watching her for the past couple weeks.

At first, I listened to her moan and groan about typing one-handed. She's writing a dystopian novel. Yes, I understand that particular hardship. As the picture suggests, Mel a charter member. This where we differ. Instead of first trying to figure out how to do something, she'll gripe about it first. I order to nip it in the bud now, I hold up my right arm and say, "Hello!!!??" There isn't anything she can say that I haven't said a million times over the past five years. She'll be in the splint for two to four more weeks. It couldn't have happened at the worst possible time. We're busiest on the homestead this time of year. But it has been and interesting observation.

It's not that I don't empathize and sympathize about her struggles. I can and do. But I listened to this for a couple of weeks of how she couldn't do anything, before I started with tough love. She had to get up and do. Between us we have two working hands. Granted they are both our left hands, but still. Two crafty women, like we are, should figure out how we can get things done.

Sort of like this

Our current project is the new rabbitry and chicken areas. These two areas are built with pallets and cattle panels. The biggest and hardest part is digging the holes for the post supports. She gets on one handle and I do the other one. Having hard, compacted clay to dig in isn't making this a quick process. We are managing two holes a day but we are getting it done. We had one 24' wall complete before I left for home. That's a major accomplishment. Now we have to do the other side. Mel figured out she could push the handles open without causing pain so she planted some 4x4x4s while I was gone. All it took was me giving her a kick in the pants to get her started.

Before I left for home we were watching Netflixs and doing assorted tasks. I am knitting baby bunny rattles for the local crisis pregnancy center and Mel was rolling cigarettes. Yeah, I know. I know. But I pick my battles. The pain of using her fingers got to her and she was messing up the cigarettes. She shaking her head, tears rolling down her cheek and she was whispering, "I can't. I can't do it."

Ouchie!

I looked over at her and told her to clean up her mess and stop for the night. We'd had a full day of animal care, one of our buck Angoras toenail ripped open one of his testicles. We had to do minor surgery. Her holding him and me doing the cutting and closing to neuter him. Three drops of morphine had him totally sedated while we worked. Well, he'll be a good wool producer, but not a breeder. We switched off doing therapy exercises on the other buck, Dustin. We had dug two holes and placed four panels for the rabbitry. We had dinner and cleaned up afterwards. We were both exhausted. I told her...
  We can only do what we can to the best of our ability and no more. As much as we'd like to do more or do better, that's the honest truth. You can only strive to do better. Never when too tired or frustrated. When those two factors are in play, you will only fail. So take it easier on yourself.

So are you feeling like defeat is being snatched from the jaws of victory? Maybe, it's your point of view. A defeatist starts a sentence with 'I can't.' A moderate starts a sentence with 'I'll try. An achiever starts a sentence with 'Watch me.' Sure first attempts and maybe the first ten times you'll fail at the attempt. Eventually, you will snatch victory from the jaws of defeat.

Nothing is impossible.

Sunday Stroke Survival: Have You Given Up?

I'm fast approaching the four and five-year mark of living post stroke. I have to say that the idea of giving up the hope of full or even partial recovery of my right arm and leg has crossed my mind. But still I hang on with my finger tips to that hope.

The difference between me giving up hope and others is that I'm not standing still waiting for full recovery. I'm living my life to the fullest while waiting. Sure, I may have moments, days, weeks, or rarely a month on the self pity pot, but I eventually snap out of it. What about you? Are you still on it? How boring! Don't you want better for yourself? I know I did in spite of having two strokes.

If you've read this blog very long, I know you've shaken you head in amazement about what I have done since my strokes. It honestly has taken some hard work and thinking outside the box creativity to get here. I'm still without us of my left arm partially. The shoulder works, Thank God! But from the bicep to the fingers, nothing except some serious spastic muscles. I truly believe if it wasn't for the spasticity, I would have regained full use back. I was well on the way before it set in full force leaving contractures in my wrist and fingers. My ankle is another story. I couldn't strengthen the Extensor Digitorum or Peronesus Longes (outside, lateral calf) muscles enough to control my ankle from inverting. See, I know which muscles are affected by my strokes and are causing the trouble. But I can voluntarily evert my foot and dorsiflex when the spasticity is not present. I still am working on these issues with exercises. But, I'm thankful for my AFO, it allows me to stand and walk.

My attitude has been my saving grace and my frustration point. It's no secret that I'm stubborn because of this I'm resilient and tenacious. It's also no secret that I'm a cheerleader. I'm always rooting for the underdog even if it's me. These traits have carried me through a lot over the decades. I used to say learn something new each day. Yeah, I'm a nerd. But, since I had a stroke I've added to that. Attempt to relearn or try an alternative of something you used to do each day. Nothing is easy the first time you try. Heck, it may be difficult the first twenty times you try, or even the 500th time you try. Who would have ever thought a video of me cooking or canning one handed would get 4,000 plus views, but it has. The same goes for a lot of videos we produce where I'm in it just doing.

There isn't much I need assistance with and that's the way I like it. Mel has learned to ask before jumping in. I really appreciate that. I could have been like many I see being rolled around in a wheelchair post stroke. Nah, not really. I would have fought my way out of it. See, my attitude is showing. Not to mention that it would have been impossible for me to get around my house with a wheelchair. Circumstances and sheer will got me up on my feet again. The same can be said for everything I can now do. I keep pushing my boundaries.

Nothing ventured is nothing gained. It's true. Are you satisfied with your life living post stroke? I sure wasn't. I had dreams and goals for the rest of my life before a stroke sideswiped me, didn't you? I know you did.I didn't have the luxury of time after my stroke. I had a terminally ill husband at home who needed me to function. I had to do to the best of my ability and fast. I spent a total of 30 days in the hospital and rehab unit. Then I went home to what awaited. I knew my children would help, but not for long. Within six months, I was doing almost all again. I was walking, talking, driving, cooking, and caring for my husband who was only slipping away, and able to less and less.  Did I feel hopeless or helpless? Truly yes! But I didn't have a choice.This was my saving grace plus my attitude.

Your stroke did not kill your brain, only parts of it. I know you still are thinking trapped inside that nonfunctioning parts of paralyzed body. I know I was and am. My mind is going ninety to a million miles an hour. I could spend hours, days, weeks, months, and yes, even years bemoaning my lot in life. But inside, I use all that brain power in thinking of things I can do and how I can do it. Yes, I will continue to fail at trying to use a manual can opener. But that doesn't mean I won't pull it out of the drawer and try it from time to time. There's got to be a way to use it. I just haven't thought of the correct way yet. When I do, you'll be the first to know.

Yeah, I'm hard headed, stubborn, and have an attitude. Beep, beep! Get outta my way! I might just run you down if you get in my way with the speed of my brain power. I ain't dead yet. That which does not kill me, makes me stronger. Want my attitude? What's stopping you?

Nothing is impossible.

Sunday Stroke Survival: Keeping Hope Alive

Today, on the anniversary of the day the twin towers fell in New York, I ponder just how to keep hope alive. Not only alive, but thriving towards post stroke recovery. It is really difficult when faced with years post stroke to keep even the smallest faith that recovery is even possible.

As time passes, hope can be lost in the shuffle of day to day living. This is a blessing and a curse. A blessing because it helps you cope with the day to day struggle and frustration that recovery hasn't happened yet. A curse because it not striving for recovery but adapting to the change. It's not an all encompassing and consuming thought.When thoughts become a back burner things, you no longer have a driving will to push for it. But honestly, having that force is exhausting which is why as time passes it dissipates. No one can survive the do or die drive for an indefinite period of time.

We, as survivors, make concessions. We adapt our thinking and goals for survival's sake. There's not a day that goes by that I don't think, "when I get my arm, hand, or leg back." But it's not a thought in the minute by minute passage of time through the day as it was during the first few months after my strokes.

So How Do You Keep Hope Alive?
Focus on the small stuff. What can you do now compared to just after your stroke. I do this quite often here. 
Remind yourself often of your accomplishments. I also do that here on this blog. 
Tell yourself often, "It could be worse. You could have another stroke." Wait. I did that. It reset all my progress back to square 1.
Where there's a will there's a way. You don't fail to hope UNLESS you give up. 
Be angry at the powers that be for not doing better for us. How's that working for you Dean?
Get off your duff and do something...anything! Enough said.
When all else fails PRAY. Isn't that when we usually pray? When there is nothing left for us to do? We always want control of the uncontrollable.

So how do you keep hope alive when the waiting has taken years and you see no meaningful, miraculous results? 

Nothing is impossible.

Sunday Stroke Survival: Statements That Make Me Angry

There are few words or statements that make me red faced angry and want to scream at the person saying them. I'm usually a quiet fighter, and a behind the scenes type advocate, but sometimes I get my dandruff raised and it makes me yell from the rooftop at the stupidity of the person voicing the trite, too often said rhetoric that I read as "I can't be bothered to deal with you anymore." I'll become the champion on my white horse and gird my armor for battle. As with this case...

This case came to my attention a few weeks ago. A young woman (37) with two young children (under the age of five) had a stroke. She had a promising career as a teacher before her stroke. After she hit the post stroke prime, six-month window passed, she was told her recovery was as good as it will ever get. In fact, her insurance was now balking at paying for any other treatment pertaining to her stroke because of this one neurologist's charted note. I'm thankful her neurologist wasn't mine, but now she is a patient of my neurologist and is back in therapies (OT, PT, Speech). :o) Now that she has met the right people, me included, she is fighting the system. She's too young to start giving up. She has too much to live for and yet achieve.

My momma always said to be careful about what comes out of your mouth to others, because once it's out there, it's out there. This woman was beside herself, depressed, and broken, before she came to my attention. Her main rehab was to get her up and walking with assistance, being able to speak a few words, and able to go to the toilet by watching the clock. Now mind you, I'm not knocking these achievements, major quality of life issues, but what about the rest of her quality of life, her self perception, long term goals and hopes/dreams? Where was the encouragement to continue progressing forward? Where was any hope given as even a slim option?

The thing about the professionals that surround a stroke survivor is what they say is usually it. They are the professionals after all. They have a sheepskin to prove it. I too have sheepskins that I can paper a wall with too. But if the professionals don't use it responsibly, the diplomas are no better than an old, beaten up 1960s wallpaper. It's the major reason most patients with long term conditions leave the modern medical world behind. The professionals are at fault. These patients, instead of finding a supportive doctor or therapists that believe it ain't over until you are dead and buried,  just drop off the professional medical grid all together. This can be dangerous. Most do not have the knowledge of how to make/improve their lives for the better. They accept these trite judgements as cold, hard facts. I was a medical professional and know this to be true. Professionals, especially, need to engage their brain, before opening their mouths.

Fat lady has sung, not hardly!

The person hearing the fat, lady sing from professionals believe they, the professionals, are right. I'm living proof that THEY ARE WRONG! I've proved the statement "this is the best it's gonna get" wrong more times than proven right in over half a century. I did it from birth (3 month premature, weighing 2lbs) and I ain't about ready to stop now. Yeah, I lucky (sometimes), but I attribute most to God and my fighting spirit. I'm worse than a dog with a big, fatty, meaty bone in "leave me alone I'm working on conquering this" attitude. I also love and thoroughly enjoy proving professional wrong too. (grinning) They don't know everything. They are not God. They only think they are. By making the rhetorical, asinine, and trite statements...they are setting themselves up for a hard crash to Earth by me. Well, truthfully, I love it because they become better practitioners hopefully. No one else will have to listen to their dribble. At least that's usually the case for me.

It will be fun moving to a new town and getting new doctors who don't know my introductory volley of "I was practicing medicine when you were in grade school/ high school/ college/ medical school" when they try the usual pat answers. I expect them to earn their money from me. I mean $250 for fifteen minutes of their time? Not really though, I honestly hate shopping for doctors and practitioners. The wise, wait for me to explain my points. The ones who get fired/brought down hard are the ones who respond with a back with a trite answer. I do my research. Many of them don't have the time. They will either jump on the same page as me, or be several pages ahead of me if they are smart. It isn't pretty to watch a grown person shrink to a couple inches tall, or  see their egos busted like a deflated balloon that they worked so hard for. But, somebody has got to do it for everyone else. I'd rather they do it with me than this teacher who took their words to heart and set in concrete. Who is the captain of this ship? Yeah, you're the captain of your dingy. I'm on a battleship God provided me with, so there.

I've got a tribe behind me of hundreds who can back me up with enough facts and figures to bury them. It could be thousands or millions if I had more time than 24 hours a day. If I don't know, one of them will. I'm only five feet tall, but watch me get ten feet and in your face when riled by pat answers. I've got decades of experience behind me. I take nothing at face value. This is MY life we are talking about. What is done and said is up to me to accept. If you have a problem with that, then move over and out the door.

So back to this young woman. She is fighting back. When she has a bad day, she'll call or Skype one of about ten local people. She now has a tribe behind her for support and answers. A good support group/system is essential. The ultimate support group/system is more worthy than gold or money amount of you can ever visualize. She will continue to improve and recover. Her life is blessed and hope filled now that we've deprogrammed her from the "professional" junk.

For me, it's a continuation/reaffirmation of ...

Nothing is impossible.

Redefining Disabilities Project~ Post #5

It's that time again to answer another question.


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

This is a toughie mainly because there are so many to choose from. I haven't exactly lived a normal, humdrum life. I am, by no choice of my own, an adrenaline junkie. Well, that's not entirely true...maybe in the beginning. I choose to make a difference in whatever I'm involved in. I'll be the spear head instead of the shaft. That's my choice.

I read about an artist who was a quadriplegic. Of course I'm talking about Joni Eareckson, now Eareckson Tada, and was inspired that even with her disability she became an artist. 

Then there was Jill Kinmont, the Olympic skier, who became a
teacher despite her being paralyzed.

Who was I, a "normal" teenage with some unchangeable "disabilities." Nothing like these women faced and I could achieve my dreams also. I, like them, set out to make my own mark on life. Anything was possible with determination became my life defining, guiding star of focus.

As a teenager, I was named Junior Ambassador for the American Lung Association for Georgia. Yeah, I started early as an advocate for the underdogs in this world. Not to mention my own lung incapacitates. Who would have dreamed that later in life, I would be married to a man dying of COPD? Ironic, huh?

Later in life, I became a JRA spokesperson for the Arthritis Foundation because I had a daughter with Juvenile Rheumatoid Arthritis. Another underdog situation, I was hopping mad because there was not enough public awareness or support for these kids and their families.

I wrote article after article about it leading to my first book publication. So in the beginning, my writing career was a fluke that I came to love all because of being an advocate fighting for recognition for the underdog.

Self serving? Yes, but I took it to the ultimate levels. I didn't just sit back and take it. It taught me to be proactive no matter what came in the future. That leads me to today as a stroke survivor. I write this blog which is republished through various entities worldwide. From just the emails, I've counted ten countries so far. That's just that I know about. But by going into the analytics side of this blog, it's more like 50.

Credit My new T-shirt

Roughly two-thirds of all stroke victims survive their stroke. We all want answers, news, hope, the down sides, the up sides, and the in between. I'm no different.

It's encouraging to know "I'm not he only one." That's why I talk about everything on this blog regarding my stroke. Nothing is taboo. I also don't blow smoke up your wazoo, but tells it like I see it.

Life with disabilities is no picnic. But take comfort in the fact, there's always someone worse off than you. I always say things can be worse. Just look around you. While there is life-there is hope that it will get better.

About my new T-shirt...Yes, I won. Yes, I'm paralyzed, but I'm a winner. Yes, I talk funny, but I'm a winner. Yes, I'm jobless minister, but I'm a winner. Huh? How do you figure? I see y'all scratching your heads out there and the steam coming out of your ears as you work those brain cells too hard.

I won because I'm alive to tell the story. Yes, it might take a week to write one blog, but I do it. I might have no or limited use of one side of my body, but it could be worse. I could be like Joni Eareckson Tada, with no use of both arms and legs, but look at what she has achieved! The aphasia limits me in speaking, but I still can make my point by typing and speaking. Some stroke survivors are just learning to vocalize after ten years post stroke. I'm still a minister although I'm not in the pulpit again yet. My congregation is you. The down trodden looking for hope. Hope is the one thing I can still believe in and instill in others. Where there is will and hope, nothing is impossible.

Sunday Stroke Survival ~ Caregiver, The Life and Times

No the time stamp isn't wrong. It is a little after 4 AM. I hear ya. "Woman, don't you ever sleep?" Here's the 411 on caregiving. Pun intended.

I'm talking about my full time job as a caregiver in the wee hours of this morning. I started earlier than expected this morning with a feeble cry from my DH, "Buddy's out!"

That was at 2:30. I'd been in a deep, hard sleep for maybe an hour and a half. Somehow how he'd gnawed his cage closure until it opened. My usual command, "Get in your pen." didn't work. He was too worked up from cavorting free with all the open space of the house, and with the cats and dogs. But no, this AM with my eyes trying to stay open, I'm corralling and coaxing him back into his cage. He finally decided he'd had enough fun  and it was time to go to his pen.  He jumped in and promptly plopped himself in a comfortable position. I fastened his cage with the first thing I could grab, two jumbo paper clamps and pushed a ladder back chair against the door for good measure.

"Take that!" I said with a sleep deprived, maniacal chuckle. My rabbit Houdini could care less at this point. I'm half heartedly afraid that he'll figure a way out. But now, my hubby is comfortably asleep and I'm semi wide awake.

I opened the pet door for the cats to do an early morning prowl and the dogs could go out if they wanted to, and grabbed a Coke Zero out of the fridge. Now I sit in front of this computer until the next round of medicine pass at 6 and 7 AM. You couldn't pay me enough to go back to sleep at this point. You see. I'm not only a caregiver for my husband but for me a stroke survivor with a terminally ill hubby, rabbit, Guinea pig, chickens, cats, dogs, garden, and life in general. AND you thought you had it rough as a caregiver. I'm a caregiver treading water...oh, I forgot to mention...I'm also a part-time caregiver for a father who has rapid onset Alzheimer.I could use a caregiver, but nobody is as good as me. Nobody would be insane enough to want my life.

I could go on and on with the multiple jobs I do as a caregiver. I have multiple posts on the subject which highlights just a glimpse into my world, BUT that's not the gist of what I want to talk about here. This is...

Hope, survival, joy, and peace of a caregiver is what I want to stress in this blog piece. These are the MasterCard "priceless" moments I get from being a caregiver.

• Nobody can do it better
• The laughter
• The companionship
• Adaptability
• Never a dull moment
• I did it THEIR way.

I say this with some shargrin, nobody can do it better than me. Sure, I can pay someone to come in and lightening the load for me...like hospice, but while they are great, fabulous, and awe inspiring they can't take the place of me. What hospice amounts to is a home based nursing home. They do their time and go home to their own lives. This is my life. Everything in my being me revolves around the personal care of the care receiver. Whether it's a hurt bird that my cats bring me, any messes that are created, or anything I attempt. Will it get done by someone else, yes it can, but not with the passion I bring. The motivation is different. Theirs is a job, but with me it's life. Life is priceless.

The laughter of that entity is what I miss the most and often talk about afterwards. Whether they've caused the laughter or it's shared. If you cannot laugh at yourself, you are a mightily sad person. Like the picture says, "Laughter is the best medicine." How many times while interviewing a family before a funeral has someone broke out in laughter. Each and every time. Someone will recount some antic, story, or quirk of the dearly departed that causes a chuckle or two. I wouldn't miss it for the world.

The sharing of laughter is a priceless gift. Laughter even through tears brings joy in the remembrance.

The companionship is based on trust. Whether it's talking about what to have for dinner or final wishes.  Whether it's just talking to a dumb animal who may or may not understand a word that you are saying, or snuggling up to your beloved. Buddy has picked up the habit when he sees me coming of jumping into his litter box, and then hopping to the cage door sticking his nose through the cage openings. When I open his cage, my knee partially blocks the opening and he'll give it oh-so-soft bunny kisses. There is another form of companionship. One of the cats will form circle eights around your legs, or a dog will curling up at your feet barely touching your shoes. All of this is priceless.

Constantly being adaptable to most is a major headache, but to me it brings joy. I never forget to look for the good in spite of the bad. Being adaptable allows you to see the beauty around you. Yes, it's hard to seek beauty when changing an adult diaper, but noticing clear, unbroken skin where a pressure sore once was is reward enough. Stopping in cleaning dishes and peering out the window at the neighbor's child as he examines an ant hill. Allowing for change for there will always be changes. Rolling with what comes and finding the joy in it is probably the hardest thing to do. But when you adapt it's priceless.

There is never a dull moment around this house. Something is always happening. Whether it's a rabbit getting out of his cage in the wee hours, power failures, too much rain, falls, chaos, and mayhem. If it can happen, it will happen in my house. Sure other people have stuff happen in their houses, but coming to my house is a vacation to them. They leave thinking, "I'm glad this wasn't my lot in life."

That's okay. I'm happy and I'll never be bored. I've always been a proactive, grab-the-bull-by-the-horns type of person. Maybe that's why I'm a Taurus. Other people's lives seem so boring to me. I strive for interaction. I've got it in spades and it's priceless.

The best thing about being a caregiver is that I'm giving someone else THEIR way. It's the most priceless gift of all. I've been a caregiver in one shape or form or another my whole life and too numerous to count.

Having the responsibility of the whole caregiving lifestyles can be daunting at times, but brings you immeasurable returns in enriching your life. You get to experience the joys, heartaches, and be a part of someone's life in a way no other has a chance to. To give of yourself. To be the best of yourself. And it's an act of selflessness unsurpassed by none short of dying. It's cost is almost nil except for time, but the whole experience is priceless.

There comes an inner peace of giving it all. Similar to a marathon runner who crosses the finish line at the end of the race. It proves over and over again that you can survive against the odds. There is satisfaction in knowing your have given comfort until the end and it was a job well done. It may not have been pretty in the doing, but it's gorgeous when complete.

Would I swap lives with someone else and see how the other half lives? Not a chance. I could have run and hidden away when the caregiving opportunities arose, but I have found more about myself and what I am capable of being a caregiver. A view most people only dream of.

Even as a stroke survivor, I'm challenging myself daily doing most of what needs to be done as a caregiver. Some things fall through the cracks like vacuuming or dusting, but I'm there in the moment pushing the limits that I might not have done otherwise if I didn't have to. But therein lies an added benefit for me in the future...I'm doing it.

Nothing is impossible with determination.