Sunday Stroke Survival: Post Stroke and Techology

No, this post is not about changing technology in prevention nor treatments for dealing with post stroke issues. But that would be a good post also. It's about my post stroke brain function after my strokes. You know how I always say, "Don't compare what you could do (prestroke) to your reality now? I'm gonna break that rule to make a point. I really missed by old brain at times like this. Before I killed bazillion brain cells with my strokes.

Prior to my first stroke in 2012, I was a very mechanical and technology minded individual. Learning how to use the newest version of a program was never an issue. I'd run circles around any computer program or device within fifteen minutes of loading it. I'd have a basic working knowledge. And then, I'd read the manual to find more bells and whistles that I didn't find in "playing" with it. I'd make programs sing and stretch the boundaries of its limits to make it do what I wanted it to do including changing the programming. Yes, I was a computer programmer once upon a time.

All of that came to a screeching halt with my first stroke. This is one area with adapting and changes, I've had real

trouble with. It's all due to the killed off brain cells and cognitive function of my brain with aphasia. Something gets lost between knowledge, understanding and function. Now I despise newer versions, or total format changes where I have to start from scratch to know how to operate these systems and devices. Most times, I now have to ask for help just to do the basic things. It's maddening, irritating, frustrating, and it hurts what little pride I have left.

First, Pogo.com was bought by EA Games. EA Games deleted a bunch of games which I used for cognitive recovery and reinforcement citing changes in technology made these games were being either reworked (new programming) and ultra High Definition technologies or they were gone forever. My husband and I used the yearly membership dues as part of our wedding anniversary present to each other for also 16 years. Since his death, I continued with the membership because of the cognitive therapy. Well, my membership is due for renewal next week and I've decided to stop it. All the new bells and whistles are too distracting when I'm trying to focus. They can keep the ultra high definition and new programming.

Now Blogger is changing formats again. They've added several bells and whistles over the years but not a total

revamp. Even with the changes, you had an option to go to the "Classic" blogger set up. Recently, they release the "New and Improved" Blogger. The difference is its a convert or leave and there is a deadline.  So now, I've switched over. I honestly dislike the new format. While it has cleaner lines and less junky looking, there are so many hoops to jump through simply adding a picture. You know me and pictures. It's a gotta have it thing. I guess in the long run it will get easier. The idea of learning a new blogging software, but that would be just as maddening. I've been with Blogger since the 1990s.

I use labels to catalog my blogs for SEO. I used to be able to type it and the categories (100+ in here) I've used in the past would scroll down so I could just click on the appropriate category. Now, there is a check box. I have to scroll up and down the list and check the word. This takes a lot of time. You just can't type the word either. It doesn't show up under labels. You have to add a label, scroll down and find it, and check it to add it to my saved labels. The scheduler is about the same. Now, I used to open up the "preview" option which opened up in a new screen. This allowed me two screens to edit my post with. It now longer allows this. I'm having to switch screens, previous page arrow twice before I can edit. Oh, I have to switch it back to draft mode when I edit. It gets very confusing to know where I am and remember what and where the edit needs to be. This new Blogger is not old, brain damaged folks friendly.

Everything I used to know where it was and how to do things has moved or changed so I have to stop and figure out how to do it. Or, it has been deleted from the program. The only thing that hasn't changed is my blog looks the same. The CSS hasn't changed, but I have no access to the hmtl anymore. Some if I want to do a special format for a section, I can't. Or, maybe they are not using html based program at all. I dunno.

Thanks for reading my rant on living post stroke rant. Have any suggestions?

Nothing is impossible.

It just seems that way sometimes.

Sunday Stroke Survival- Neurosurgeon Update

Well, I had my appointment with the neurosurgeon this week, but the news wasn't what I expected. The surgery for the cervical rhizotomy has been tabled for a year. His schedule is already booked for 2019! Talk about frustration and being irritated.

Why have me jump through the hoops for months when surgery was not a possibility for a year? I'll just have to redo the same tests all over again before surgery can be scheduled again in a year.

To make it worse my PBA kicked in. Instead of losing my temper and yelling, I bawled like a blubbering idiot. I have done everything they've asked, waited fairly patiently for appointments, and I was cast aside like a worn doll or at least that's how it feels.

This specialist did say he had a new partner. Great! A small glimmer of hope. He would discuss my case with him. It might be possible to have a Baclofen pump installed until the rhizotomy can be performed. Huh?! Isn't this why I jumped through hoops months ago and was deemed unqualified for? I was told not necessarily. I had been deemed unqualified for the dorsal/lower back Baclofen pump to reduce the spasticity in my leg. This was different it packs a greater punch to the brain and arm. But it will be up to his partner. Of course, being now after 5PM, they will have to call me back with an appointment. GRRR! They called while I was typing this. I have an appointment on February 4th.

Am I crazy to want to be out of pain? Am I crazy to want to stop my post stroke spasticity? Would I be certifiably insane to continue chasing this rhizotomy? I'm beginning to think I am. I've spent dozens of hours driving back and forth the Emory. Added wear and tear on my van, and burned 5 tanks of gasoline. Spent money I really didn't have for parking fees and meals on the road. And, it's been over twelve months with NOTHING to show for it. I'm in the worst, constant pain than I have been in years with no end in sight. I'm continuing to lose function. I'm no where closer to the end than when I first started this journey eighteen months ago.

The fact is, I'm frustrated and tired. I really don't know which is worse at this point whether never hearing back from Shepherd's Center or the run around I've gotten from Emory. I'm seriously thinking of getting Botox again. Even 45 days of being pain free out of 90 is better than the never ending routine I'm going through now. I might even be able to reduce my Baclofen/Dantrolene/Valium dose. Lord knows, I'm at best a zombie now on these maximum doses and still in pain 7 out of 10 on good days. I'm learning to live and function at this level through squinting eyes and grimaces.

I can actually function quite well with my arm bent at a 90 degree angle if it wasn't for the pain. I can hook two gallons on milk (about 18 lbs) or 6 splits of wood in a tote with the arm. My arm doesn't budge. With 8 splits of wood (about 35 lbs), the arm may lower a couple of inches. I'll have to use my functioning arm to help support it so the tote handles don't slide off. That's not too shoddy. My back is another story with the stooped lifting with too many repetitions. I just have to watch for skin break down at the hand, wrist, and elbow. The tote was a new purchase this year. It is better than hauling in firewood one or two pieces at a time. Why I didn't think of this two winters ago, I'll never know. But from one moment to the next, my arm will go from 90 degrees to in my chest in a hard spasm. Any movement when my arm is in hard spasm shoots the pain level to 10. I can't scream. I can only shed tears.

If I don't hear something positive from Emory, I'm calling my regular neurologist to put me back on the schedule for Botox. I'm tired of jumping through hoops and getting no relief. This isn't living... it's hell and I've been patient.

In the meantime, I've made two different fudges. One chocolate made with semi sweet, bittersweet,and milk chocolate (think death by chocolate) and a peanut butter one with crunchy peanut butter. Sometimes you feel like a nut and sometimes you don't. I've also got my gumdrop cakes in the oven for eating and giving. Later, it will be cookies. I made cinnamon gingerbread men ornaments for the Christmas tree. They smell yummy but they're not to eat. They taste yucky. Pop over to the Cockeyed Homestead blog to find out how I made these. Nothing perks me up after a totally bad day (months) like preparing something yummy in the kitchen.

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.

After a Stroke~ A blog and a rant

Kate Allatt had a great post today. It was about changing the focus of the National Stroke Association and mental illness in stroke survivor. I whole heartily agree with her.

Is it any wonder why Dean considers the National Stroke Association a joke. For the past two years since my stroke, I've subscribed to their newsletter. What do I find in my inbox? Pleas for money, participation in fund raisers, and a focus on stroke prevention, ie, F.A.S.T. As if stroke

survivors had abundant loose change floating about to donate.  Many stroke survivors are in the same boat I am. Our loose change goes towards NEEDS because recovery is first out of our pockets. Fund raisers and awareness campaigns are a great thing to do for nonstroke survivors. F.A.S.T is a half lustered approach for warning signs you may be having a stroke, but why give the stroke survivor a goodie bag full of advertising. Isn't that like putting the cart in front of the horse?

National Stroke Association put that money into where the money can do the most good for stroke survivors...research and recovery, even adaption techniques would be more useful.

After all, that's the only reason I and most survivors read your site. To date, I can count on one hand how many articles were geared for the stroke survivor. We didn't die from our stroke and trying to find normalcy. Help us. Be of use to us. Sure prevention is important, but surviving a stroke is just as important.

<stepping off that soapbox on to another>

Kate brings to light another point of why mental illness is so prevalent in stroke survivors. Actually, a couple of them. Robin Williams' recent death by suicide sheds new light on depression. He's just one of millions.

In my own experience, I see this happening in my own life. When I first came home after my stroke, my children were failing all over themselves to help their poor, old mom. Granted I couldn't do much. As time progressed, the visits/help became fewer and fewer. I might see the one daughter who lives the closest once a month. The others, every six months, if that.

Yes, as a momma, I make allowances and excuses for this behavior, but really? "Call me, if you need me." But when I do call only when I'm desperate, you are all busy in your own lives and be able to fit me into your schedule next week. I understand this is an intrusion into your life. That's why I waited until I'm desperate!

My daughter came in from AZ. When I asked her to clean (knowing it would be spotless after it was done) my kitchen after a six month's absence, I got, "I told you I wasn't going to do this again."

Forget about Mom had a stroke. Mom has had a seemingly endless pressure sore on her foot. Mom is using every spare ounce of energy she has caring for their stepfather. Forget about the money she was trying to raise on limited resources to help her. Forget Mom is your sounding board and supporter for life past and present. Just nope, "I ain't gonna do it" and didn't. In fact, I saw her only thirty minutes in each of her three visits that week. Closer to ten minutes after she spent time talking to my DH (darling hubby).

When I complained, which I don't do very often, to my oldest daughter who lives an hour away, about the lack of help I got, "Well, I put my life in a holding pattern for the first year after your stroke. When do I get a chance to have a life?"

I won't ask my grandchildren to do clean or do most of the things I can't when they come (few and far between) anymore because they leave a bigger mess than when they started. Once was enough for me to learn this. It took me two months to clean up that mess.

My hospice volunteer had life get in the way. So I hired a neighborhood young man to do the yard work. After a sob story, I paid him in advance for work to be completed. He is history. I haven't seen him for three weeks. Lesson learned and pocket emptied.

I get offers from neighbors and friends near and far to help...

"If I only lived closer." (Even if I know you really mean it)
"Just call."
"What can I do for you?"
"Oh, I don't have time for that right now. Maybe next week"

Frankly, I'm tired of asking for help and not getting it. I may be two years out from my stroke, but there is a long list of things that are just a physical impossibility to do, but I still try because I'm the only one I can depend on while others depend on me too.  Now I know everyone doesn't have the same attitude I do...if you see something needs to be done, then do it. I can't be the only one.

So if you are amazed by what I write I'm doing, in spite of personal risk, please understand I'm doing it because I have to. Don't be amazed. Somethings need to be done whether you can or not. But somethings just can't be done and permanently left undone unless I can find someone else to do it. Is it any wonder that the doctor increased my antidepressant (for Fibromyalgia) to combat signs of stress/depression. Nope, not in my mind.

Things that make me go GRRRR!

The ignorance of some people! Case in point.

I was in OT yesterday when I noticed my shoulder had a catch in it during one of the stretches. I told my OT about it and she asked where. I pinpointed the spot for her, because I hadn't had it do it before. I'm a firm believer in open communication during therapy.

She said she would try to fix it. Sometimes the muscle kinked under the shoulder blade. She had me roll onto my left side and she began doing a pressure point maneuver around the shoulder blade, and lifting and moving the scapula. No big deal, it was helping.

123rf graphics

There was this guy in the next area watching us while he was sitting on a yoga ball working on stretches for his lower back. I know the exercise all too well. He was complaining about the steroid shots the doctor had given him and how he hated shots.

"Women come here and get rubbed on while us men folk have to work up a sweat." He said it loud enough to where half the open room heard him. Even my old PT heard him and looked up from his computer station in the center of the room.

Giving him the benefit of the doubt, and I tried to focus on relaxing my shoulder so the OT could do what she could do to fix the problem, I basically let the comment slide.

He couldn't leave well enough alone. "I'd change places with her in a heartbeat."

Both his PT and my OT looked at him, and told him that he wouldn't trying to defuse the situation from further comments both knowing I was about to responded. He just chuckled, "Sure I would.Y'all just ain't got any idea of what I've been going through."

I probably should have let this slide, but I didn't. I opened my eyes and not raising my voice above normal I asked him, "Really?"

Both therapists looked to the ceiling. They'd tried. They knew what was coming. I'd verbally Jap slap him (as only a Japanese person could do) and make him feel two inches tall.

He nodded his head with the sweat from his exercise emphasizing the motion.

"Yeah, I'll trade your lower back strain for my paralysis and spasticity from my stroke any day," I responded. "It's been two years of therapy, fifteen plus injections every four months, and charlie horse like pain that lasts for hours with no end in sight. Not to mention, relearning everything I once knew how to do. Yes, I'll trade with you any day."

With that I closed my eyes and focused on relaxation. I never once raised my voice above normal conversation tone. There was no bluster or fluster. It was just a statement of facts as I knew them.

Then he really looked at what my OT was doing for me. How she was having to lift my arm and hold it into position while she put pressure on my shoulder blade and the AFO on my leg.

He muttered something about being sorry and he didn't want to trade after all.



I shouldn't have done it, but he ran headlong into my abhorrence of ignorant/thoughtless people side of my personality. My momma always taught me to think before speaking because once something is verbalized, it's out there. Maybe his momma should have taught him that.

"I Understand," He Said

Confession time. They say confession is good for the soul. I know this is true. Being a minister, I've said it often enough.

This weekend from Friday to Sunday was spent in a teary eyed haze. Part of the reason was the PBA I suffer since my stroke. Part of it was the circumstance I find myself in. Another part was me being on the pity pot and just so blasted angry, frustrated, and tired. My thoughts just wouldn't stop and to be truthful I wouldn't let them. But that's not my confession. That just is.

Thursday my husband's electric wheel chair decided to quit. It sounded like something had

wrapped itself around the wheel and prevented it from moving. I thought if I could tilt it I could look under the thing and maybe fix it. While I could push it and rock it, there was no way to control the fall with only one hand. Remember forethought before action. So I tried to think of another way to do it and failed. I eventually gave up and called the company I bought it from.

They picked it up and took it back to their shop. Friday morning they called with the bad news. One of the motors had fried. Because we bought it used it has no warranty. It is going to cost as much as we paid for the thing to fix this one motor and it has two. Knowing Murphy's Law so well, I figured as soon as we replace this one motor the other one will go out too. Not to mention we didn't have the funds to replace the first one.

So all day Saturday, I searched for ways to come up with funds for the replacement motor. It's amazing how many family members and friends you have when you have money and how fast they fade into the woodwork when you don't. It's doubly hard when you've spent your life in service to others like I have.

Now that I've set the background for the confession I'll confess.

I started calling all my regular bills like telephone and cable because those are fat bills.  They almost fit in the luxury category. Granted having 300+ channels on televisions we don't watch is a luxury. Having internet service is a need based luxury. I do business via the internet. Stay in contact with family, friends, and fans via the internet so it becomes a cost of doing business (and pleasure) for both my husband and myself. My land line telephone isn't even being used because I can't get to it fast enough since my stroke. It was kept in place because of the emergency life support services.

I'd dealt with the cable company to get bare bones television while maintaining my internet. It saved us over $100 a month.

Now I was tangling with the telephone company. I first went to their internet live chat helper with one simple question, "Can I still keep my cell phone if I delete my land line?" The online chat helper was geared to U-verse questions only so no help there. I called their 888 number. Put on hold for a live person for ten minutes. Listened to crappy music and a recording to how important my call was. A live person answered finally. She couldn't help me so she transferred me to another department.

Another ten minutes of listening to music and apologies. A real voice came on the line. I asked my question. He asked me if I was on the U-verse plan. Uh no I wasn't. He had to transfer me again.

Meanwhile my cell phone is heating up my ear. I place it on my desk and start bobbing my head from side to side in the "Jeopardy" theme song. I'm making snide comments back to the computerized voice telling me "Thank you for waiting..." Heck I have nothing better to do today except for listening to your canned music and playing phone tag because YOU can't get your act together.

Finally a male cheery voice came on the line interrupting the recorded one. When I told him I needed to cut the fat off my bill he innocently said, "I understand. We are all going through some rough times right now."
I lost it totally to this man in Minnesota. "Oh you mean you had a stroke and lost the function on one side of your body, AND you are caring for a terminally ill spouse too? Small world, ain't it?"
He started stammering and tripping all over the place.

Part of me was self satisfied and another part of me cringed in guilt. My finances or circumstances were not his fault. But so many people have this canned speech prepared without thinking just what they are saying. I was tired on hearing it.

How many times has this situation come up with you? Over on Amy Sissler's blog, we had a discussion about expressions of sympathy that are construed as empathy. Or you are talking about the paralysis in your arm and a friend compares it to when she broke her arm and wore a cast for two months. So many well meaning friends and strangers saying things that they think are supportive but really are just a slap in our face. Not that I don't appreciate the gesture, I do. But understand it is sometimes better to give just a hug and a smile. Granted this poor guy couldn't do either so he said the first thing that popped into his head or something he was trained to say.

At the end...Yes I can have my cell phone and close out my land line account. Better yet for the next 30 days all my land line calls would be directed to my cell phone. For the ultimate, I'm now only $150 away from getting my husband's chair fixed. I think if I had to do it over again, I wouldn't have lashed out at this young man.

That's the truth.

Apology, Rant, Retrospect, and Goals for 2014

I've been pretty scares from the blogging world for the past two months in writing, reading, and responding to all of your blog posts, and I apologize for that.

Life has really gotten the better of me. Part of me wants to bury my had in the sand, but that's against my nature. But the though is nice and tempting.

I tend to lead by example. That's my approach to life and ministering, but it's hard.

Financially, we are at a place where I never wanted to be again...borrowing from Peter to pay Paul. The cushion we had in case of emergencies and unforeseen necessities, is gone. Prolonged illnesses can do that- husband's terminal disease and my stroke. Come in January 2014, we will be in debt again with no way of circumventing it. So much for my debt free life style. SIGH! I did enjoy it.

Now for the rant #1. My quest for Social Security Disability is over. According to the I'm not disabled right!
Administration I am able to work. Meanwhile, others who milk the system continue to be approve. It's down right irritating when pastoring a flock and leading others to salvation is considered a hobby. My book sales are down and I'm currently unable to write and publish anything new to boost sales...another dying career with my stroke, but

Rant #2. On a blog I follow there is a pastor's wife going through the same situation with her strokee husband. Helpful to know I'm not alone in my misery. She mentioned that the way people view hardships suffered by pastors and their families as leasing by example. I bristled at that. Go figure, it was an opposite view point against my nature. Yes, it's true I lead by example but I live in the world just like anyone else! Just because I'm a woman of God, doesn't mean we are better than the rest of you. We are not exempt from adverse feelings the same pressures you face when situations arrive. We just cover them with prayer and faith, but it doesn't change the facts.

Now this is going to sound totally crazy after the last part. In retrospect over what has been accomplished since 2012 and 2013. I've been blessed.

Given all the bad stuff over the past two years...my hubby being moved to hospice care, my stroke, and financial woes. I have excelled in other ways for personal triumphs.Yes, all the bad stuff happened, but with each hit I've managed to keep my head above water. I've met new friends online, continue to get support from a handful of regular friends and family. Not financial but in other ways. Actually, it could be financial because without them I would have to pay someone to do it otherwise.

Looking ahead to 2014...

•  I can expect more of the same. Doesn't that sound inviting? I'm more at peace with burying the love of my life. I can now say with certainty that life will continue.
• My stroke recovery will happen when I least expect it. I no longer expect 100% but the more the better. Yes, I've finally learned patience.
• I will be having surgery on my affected ankle to release the contracted Achilles tendon. I have no choice if I want to improve the paralysis of the muscles involved with the inverted foot.
•  I plan to breed my rabbits and build another out building (larger) to house the increase. I will be selling the excess meat rabbits. 
• I plan on getting a trio of breeding Angora rabbits. No one is doing that in a twelve county area.
• I plan on ministering more and possibly getting officially back into service full time.
• My youngest daughter and son are moving in permanently after my husband dies. I'm under no illusions that I can live by myself. My caregiver instinct will not allow it.
• I will wait on the Lord.
• Try and write more. Small projects (quick cash) while continuing to work on "Don't Get Your Panties in a Wad."

So that's the look ahead.

Keep writing and loving the Lord

and

 Nothing is impossible with determination

Thursday Turmoil ~ A Response to Ali's Blog

This week over on Ali Cross' blog, she blogged about "Call Me If You Need Anything." I thought about leaving a long comment but didn't. I'll do it here today instead. It is a rant of sorts, so be warned.  It wouldn't be a Thursday Turmoil if it wasn't. It may sound like I've got a chip on my shoulder, please be aware that I don't. I'm just giving the other side's view.

Do you know how many people have made this comment to me over the past ten years since my husband got sick and the year since my stroke... everyone that knew our circumstances. When you consider the congregation at church (not only mine but other ten churches), the hospital that I was on pastoral staff, courthouses that I helped at a moment's notice, all the local groups such as writers and businesses, foundations, ministry, work related, co-workers, etc not to mention friends of our family, it tallies up to a quarter of million times. No, that's not an exaggeration.

The little devil on my shoulder wants to answer dripping with sarcasm...
NEED ANYTHING? For my DH (darling hubby) Got a cure for cancer handy? Stop his pain. Or maybe you can restore my husband to his former robust self. For me, it's give me back the use my arm, wrist, hand and fingers, or make me walk without a AFO and cane, or maybe restore my mind to pre-stroke status. But no, I flick the devil off and answer that there isn't anything they can do for us and there isn't as far as those needs are concerned.

Now I know all these people will help IF- A) there was anything I truly needed, and/or B) if they have the time. Some would even stop what they were doing to help. All I have to do is ask and there's the problem. I have to remember who offered what, find their telephone number, match my need to their schedule and then if they can't go down the list to find someone who can. That's a lot of talking on the phone for someone like me with aphasia and no short term memory.


Now, I understand people saying this because they don't know what to say to you. I understand they mean well and are genuine in their offer of help. I also understand they have their own lives and I don't want to be a burden. This isn't a slap in the face to those that offered or didn't offer help.

My children and grandchildren are different. They know my house is a diaster area waiting on a condemned sign with half finished renovation projects. Clothes piled up yeah high, a sink with dirty dishes, floors scattered with debris because I didn't have the energy to vacuum because I used the last ounce I had taking care of my husband. "Gee whiz Grandma, let me carry out that bag of trash to the dumpster for you" type thing. "Can I roll it out to the street for you?" They all see me at least once a week. Besides, they owe me.

Not that others don't owe me as well, they do. But I never intended on collecting on those debts. I've always been generous to those in need even now even if it's a listening ear or sage bit of wisdom. Worse comes to worse the least I can do is pray.

The other well meaning statement I often hear is, "You're doing so much better than the last time I
saw you." The last time you saw me was when I was in the hospital just after my stroke or right after I got out when I couldn't talk, barely swallow, couldn't walk, or barely lift my head. Well doh! I've worked hard this year. I've worked harder than when I was holding down a full time and a part time jobs, raising four children alone, and going to college learning how to do something else with my life. The achievements and modifications I've made in the past year in our lives, 99% was because I HAD to take care of myself and my husband with children, their spouses and grandchildren thrown into the mix...just like y'all. Life does go on so long as we're above ground. The only thing I could do was go on.

For this I honestly thank y'all. I wouldn't have gained so much if y'all had of helped me do everything. But getting back to Ali's post for a minute. The gist of her post was not to offer help, but act. I agree with this wholeheartedly. If you are going shopping, call and ask me if I want to go or need anything from the store. Cook an extra plate or two of food and bring it by. It won't be turned down. Drop a card in the mail when you think of us.(Please something besides bills and AT&T ads) Most times when people ask me if I need anything, I can't think of anything at the moment. Maybe a card with your phone number on it and what you are willing to do would be helpful.

And to all those gentel, southern gentlemen who rush to open doors for me...thank you. A word of caution though. If I've propped my cane on my arm and am pushing on the door, please don't push the door open for me. I'm using it for support and balance.

Thanks for listening.


 

Saturday Saunter into Anger~ A Rant

I'm just irritated today. I read a post by Diane at The Pink House  on the Corner. She was asked to make a list of daily activities in the care of her husband who is total care after a stroke.

I did something similar couple of Sundays ago here. Although mine was a brush over my husband's care giving focusing on my schedule of what I can accomplish. Do the people that asks this question really understand what we do as caregivers 24/7? Do they think we sit on our hinny's doing nothing except for watching television and eating chocolates all day? I wish. Could they really afford to pay us? Not hardly, the bill would be outrageous!

By the same token, the powers that be wouldn't really hire someone when they can get it free. As caregivers, we give up the life we once knew. We say goodbye to a lot of things we used to have like sleep, vacations, and days off. To care for someone we love better than any nursing home could ever hope to, because we honestly care for them. I know because I did a short stint in those kinds of facilities. Not per a schedule of events, but as it is needed or wanted no matter what we have scheduled.

For years, I have scrimped, denied, and calculated every move I've made around my husband's needs. Scheduling and keeping appointments for fifteen doctors between Georgia and Maryland (just for him), medication lists as long as your arm and around the clock on-call care, monitors and alarms, and not to mention my own personal stuff or running a household. That's what being a caregiver is all about.

I've been his full-time caregiver since 2003. I sold my successful business consulting firm because I couldn't be traveling around the world anymore 75% of the year and care for him too. I took various part-time jobs as a culinary instructor, executive chef, writer and minister since then. Yes, it was my choice, but what alternative did I actually have? Could you see anyone else doing that job? For FREE or minimum wage?

I guess I could have had a live in college student. Room and board for exchange for services. And still, since my stroke I have been considering it again. We are honestly very private people and it would be another schedule to juggle. Is it honestly worth the hassle that might last twenty-four weeks if I'm lucky, before I'd have to go through finding someone else? Better to muddle through on my own. Believe me when I say I've searched for every angle and alternative.

Social Security has denied my petition again. The system is broke and no one know how to fix it. I don't mean to get political on this blog, but its the bureaucracy I'm fighting and I'm fighting mad.

They will willingly pay someone money per hour to care for my husband, but when I do it...forget about how much money I'm SAVING them. Don't forget I'm an RN too with 40 years experience! They couldn't afford me even part-time. Does it count for anything? Nope, not even a kiss my grits. All because I'm the loving wife. It doesn't keep my benefits intact. Mine have been slowly dwindling down to almost nonexistent with my husband's illness. I've checked into assisted living and nursing homes, and the cost is twice as much as we can afford short of selling everything we own. That would only care for us for a decade.

 When I broke my back, had a hip and knee replacement, and had to retire from my nursing career I had applied for disability and was denied then too. That's okay, I scrimped, saved, and went back to college to learn to do something else in my life. Screw 'em.  I thought, after my husband passes away there will be time to build it back up. I didn't count on a stroke disabling me. It seems I'm always saying screw 'em, I'll do it on my own except this time I can't and won't.

When does being a wife, mother, and full-time caregiver become a second class citizen? I've paid into Social Security for decades, but now they tell me..."Sorry we spent it all and you aren't qualified by today's standards." I would have been better off putting my money in a savings account. Earning simple interest I would have earned even more. If I continue fighting the system, I'll be eligible for retirement before its all said and done. Oh, wait. It will have gone bankrupt by then, or I won't have the quarters needed to draw funds because I've taken responsibility for the care of myself and my husband.

What is wrong with a society that allows this to happen? We are not building a self suficient life style but a dependent one. When hard working citizens get the shaft for doing what is right but not profitable. When it is easier to depend and lie to get what we want rather than what we worked for. When is it easier to step on the needs of others to make the almighty dollar to pay for a government already too big for their britches. Where it is easier to tow the line than to fight. It's okay Mrs. Murphey. Yes, you have worked hard all your life, but there's nothing available to you because you fall in between the cracks. To quote Howard Beale from the movie Network, "I'm mad as hell and I'm not going to take it anymore!"

Anyone know where a hemiplegic, who can't speak clearly with a husband that's dying can get a job? Oh, right I'm an indie author who might have another book published in the next two years. There's only a half a million of us out there to choose from. It only takes me half day to compose this blog. It only looks like it is effortless.

I feel my clock winding down and no help in sight. Have I got this last fight against the powers that be left in me? Only time will tell.

Proving You Are Not a Robot~Captcha~ Rant!

While spammers are rampant on the internet, I find captcha even more so. I don't use them or require prior approval of posts on my blog. Yes, I've been hit a few times by spammers, but not enough to add the captcha back on for people wanting to respond to my blog.

As if normally before my stroke, trying to figure out all those numbers and letters wasn't an easy thing to do. Now, it's more difficult. I am not a Spring chicken nor even a Fall hen, my eyesight is not improving with age. Now personally, I sort of understand why it is used for financial transactions, but in responding to a blog?

So as a blog reader, it is inconvenient and makes me not respond to as many blogs as I read although some I do anyhow with great difficulty. If you read the list of blogs I follow or read, you'll understand...there are over fifty that I read when new posts become available. This is sometimes daily, but at least weekly.

I know not many handi-capable or elderly people read blogs. Let me check that statement. Baby Boomers are the largest  segment or population and eligible for Social Security. We were the first to jump on the home computer bandwagon, because we were the first to be able to afford such a luxury item. We wrote the programs that computers read. And even though we are aging, we have the most disposable income. Our homes are paid for. Our children have grown up and left home. Being retired or almost retired, we are the matriarchs and patriarch of the population. We shouldn't have to prove that we are not a robot when we are reading for our enjoyment or knowledge.

Now as a blogger, I can understand if you have a traffic flow to your blog of several thousand followers or hits per day possibly using a captcha to control spammers. If you are selling things on your blogger site, you might possibly use one or prior approval to post a comment. But for the rest of you...why?

I blog as a way to open lines of communication, impart knowledge, discuss ideas, obtain feedback, and replace a newsletter I used to write.

Do I care if a spammer gets access to my account? Yes, but there is a little thing on my keyboard called a delete key which comes in pretty handy. Am I afraid of bots? Nope. I build mechanical things and can take them apart just as easily. I post my web email on my site for people to contact me. Do I get bot and spam to that account? Yep, but the delete key handles those also. Am I afraid of trackers, hackers, and viruses? Yep! But, if you don't know them why open up a link or click "open" to an attachment? Don't you have anti-spyware, anti-virus, anti-everything on your computer? You better believe that I do. If you don't, you deserve to be infected.

Have I ever had a virus or worm hit my computer? Yep, but a helpful technician, my son-in-law, fixed it for me. Besides, I back-up my information. I have online backup, thumb drives, DVDs, and CDs full of information, not to mention a slew of 3.5, zips, and 5.25 disks. I have redundant backups. No matter what machine I jump on I have a disk backup for. And yes, I still have a functioning computer that runs Windows 3.1. In case you were wondering about the 5.25 disks. Those days I used to write with Word Perfect so some of my earlier works are on it.

So why do you captcha for your blog?

Keep writing and loving the Lord.