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.

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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.

Courage? Retrospect

I was told I was very courageous a couple of days ago. My first thought was me! Courageous?? Funny, I don't think or feel that way. I'm down right miserable and terrified at times. I'm more like the Cowardly Lion from the Wizard of Oz.

I'm just getting by hopping troubles like a frog hops from water lily to water lily to keep from getting all wet. I actually had to stop and think what was I doing that could be considered courageous.

In the past few years I've had quite a few life altering events. My father's rapid onset dementia...what could be more challenging or heart breaking for a child? Granted I'm no little child on the outside, but deep inside, I still am. My stroke taking away half my body and my voice. Relearning how to do everything again or adapting ways to do 88% of what I used to do. My husband who was told by many doctors over the past thirteen years, "Any time now" finally reached the point of truly any time now. How I am still his caregiver.

Any one of these things could rock anybody's life off the tracks, but all at one time span of a year is insane. But yet I do realize that it can and does. And, it's happening to more than just me. I mean really, if I was the only one singled out to face all of this in the whole world... but statistically that would be like one person hitting the mega billion dollar lottery...it just doesn't happen. So somewhere out there is a family who is suffering the same life altering events or worse.

Would I be selfish to say I take comfort in that fact? Although I really won't wish this on anyone else. That would just be hateful or possibly wishful thinking on my part. But then, I figure anyone else faced with the same set of circumstances would be doing the same thing. Why it seems courageous to others is the fact that they haven't been punched in the gut with them like I have.

What brought on all this retrospective analysis to a head was my physical therapist telling me to relax. I answered him back with a quick comeback of "what's that?" I said it in a joking manner.
Later as I was kicking back to take a nap, it dawned on me that I no longer knew how to totally relax. I mean even in sleep mode I'm always listening. A choking, gurgling sound, or a tinkle of the goat bell, bed/oxygen alarms, power failures, or even the sound of fart coming from the other room and I'm wide awake, donning my brace to go check. It's actually a scary thought. I'm like the Lion when Toto confronts him.

Even in therapy when they sandwich my arm in heat packs before needling, I feel tinges of guilt like I shouldn't be lying there doing nothing. I should be doing something. If I doze off during the early evening trying to read something a blogger has said because I'm so exhausted, I feel as if I didn't do enough. It's no use telling me there's nothing to feel guilty about. Enough about that.

You know my tagline of "nothing is impossible." This is where it stems from and I guess that's why others see me as courageous, strong, or even inspirational. I can't take the credit for any of it.

So now you know.

Sunday Stroke Survival: Being Tied Up and Gagged

Credit

Got your attention, didn't I?
No, this blog is not about some kinky sex acts like in 50 Shades of Gray nor about a break in at my home. So if you've this reached by some search engine thinking it was..."bye, bye now."

It's about having a stroke with aphasia. One of the questions I get asked most often is describe what my first mental/emotional reaction to having a stroke was. My answer...
It felt like I was tied up, gagged, and thrown into a trunk of car, very much against my will. I couldn't move half my body. I couldn't speak to where someone else human could understand me. I could not do much without someone else.

That is once, the disbelief subsided.It's like it's all a bad dream and you'll wake up soon, but you are awake. Denial or forgetful is such a wonderful state to be in, but eventually you have to face reality. I went through a stage of this before I started fighting back to regain my life.It was only a matter of 24 hours, but it seemed like an eternity.

Trying to learn how to speak again where I could be understood was an essential in my case so it got the strongest focus. I've never been one to fade into the wood work. Too many people depended on me to communicate. From nurses..."How are we feeling today?" Doctors..."Can you feel this?" My family..."What's going to happen now?" My husband who reads lips and facial expressions. Even my pets, all expected the Jo they knew to answer them.

But when you have scrambled eggs for brains due to a stroke, sometimes simple thoughts are hard to communicate. First you have to find the right word to make any sense. Form the word and make it right, and then make the correct sound come out of your mouth. This is hard work that you haven't even thought about since you learned your first word at six months old. It can be a very frustrating and exhausting task, and I even haven't strung these words into a sentence yet.

The art of speech is often taken for granted as something learned ages ago. But for a stroke survivor, it's an uphill battle. For me, I am fortunate. I recovered the basics relatively quickly. For others, they've spent a decade or more relearning the basics.

For folks with aphasia, coherent speech is a life long goal. Even for me who speaks quite well with aphasia due to stroke. For example, I was speaking to a friend at therapy. She is the significant other to my strokee buddy also going through dry needling. It was like old home week when we get a chance to talk. She also one one the leaders of our local brainReconnect stroke group. I've also known her since high school. We were talking about elevated raised bed gardens and I lost the word I was trying to say. After several attempts and pauses, I uttered a Argh! and stomped my foot. This is life with aphasia. I knew she would understand because her other half has aphasia and after seven years is finally able to utter sentences. I didn't find the word I was looking for until hours later when I was thinking about the conversation.

That brings to mind the isolation survivors with aphasia feel. My life before my stroke was active with a number of social types situations where speaking and talking to other people was a big part. Now my life centers on a very select few, mostly family, extended family, and stroke survivors. I've let fall to the wayside friends who require communication by phone or in person in favor of emails.

Don't ask me why I can communicate better this way. All I know is that I can. It's less demanding on my brain than a face-to-face. But by the same token, it's a isolation creating way of communicating. I can take my time with a response. Time to find the right words. Time to find the correct spelling. And, I can edit it if I need to. Unlike face-to-face communication that there is evident pauses while I search for words and try to put them together correctly. Like this blog.

I believe it might have something to do with the fact that I was a writer before my stroke. Seeing and finding words on a screen is easier. The letters I think that spell the words don't come out cockeyed because of the dyslexia. I hit a key and it forms right. The spelling might be off but a red line appears. With grammar, it's a green one. It's also not as frustrating or embarrassing when aphasia raises its ugly head. I don't know for sure. All I know is my brain has allowed me to converse this way. I'll take whatever way that leads to a successful outcome.

So, how have you overcome difficulties and gained success?

Nothing is impossible with determination.

Sunday Stroke Survival ~ I Got a Stroke This Week

Before everyone panics, it wasn't a brain stroke but one of those loving feeling kind. It's been a really rough couple of weeks with my husband's hospice care. The days ran together so much that I almost didn't blog this. Yes once again, this is another take on the subject.

Often, we stroke survivors rarely think of the word "stroke" without relating it to its medical meaning (noun) instead of a verb. Like a lover's touch against the side of your face, a gentle encounter. A physical or emotional touch that leaves you with a warm, glowing feeling from an accomplishment praised or from an outsider's understanding exactly your point of view. It's been so long since I received one from someone not in my family, I didn't know how to react except having tears running down my face. No not from my PBA this time, but gratitude.

My housekeeping skills deteriorated with my strokes. I clean, but miss the corners and there are just some things that get left undone because I have difficulties doing it, or can't and it has to left for others to do. My house is not a total mess, but it isn't exactly tidy either.

The dishes are washed but I rarely put them away because it will take too much energy to do so or it would be difficult to put them in their proper place and get them out again. It's my energy saving way. It is just us after all and only I am doing everything. It's a sacrifice. I personally hate it but accept it.

When I sweep or mop, it's mostly spot jobs. I don't have the time or energy for a full clean. At least not before being interrupted by someone like my hubby with a long involved request like can you come talk to me. I often lose track of what I was doing. Just vacuuming the living room is a full day job, if my husband can tolerate the noise. There isn't a single cleaner on the market without a smell. My husband barely tolerates cooking smells without gasping for breath and that smells delicious.

So in the long run, it's not laziness but adaptation, concessions, and energy conservation that rule my day. So what is all this leading up to? My trouble with hospice. They canceled all CNA/aide service because my house was putting their aides in jeopardy. Apparently, two of his aides had been bitten by something over the past YEAR of service and had to go on Workman's comp.

This had me scurrying around carrying hospital basins full of water to bathe my hubby. I was trying to shave him and finally gave up. He would just have to wear a beard again. Not to mention hauling trash bags out of the house involving multiple trips and putting it out on the street for pick up...all time consuming tasks one handed and legged. Now, I know some of y'all survivors do this regularly and say, so what? But for me, it rare since hospice came on board. Just too much juggling. I also had no reprieve from my hubby's care...isn't that why I called hospice in the first place!

In between time, I was calling hospice trying to straighten out the mess. I was shuffling between the social workers, director of nursing, the administrator, and even corporate. They kept saying my house had fleas and had to be fumigated.  I'd have to make arrangements for my hubby to be put in the nursing home for a few days, me and my animals had to move into a motel for a couple of days while they basically tented the house. Afterwards, I'd have to strip everything down and clean it before I could bring my hubby home and repeat the whole process two weeks later. The cost was $125 each visit by the exterminator.

The kickers were I don't have fleas in my house and we hadn't been bitten by anything. Neither had the social workers, clergy, recert nurse, nurse or anyone other than the aides! I balked after two weeks and threatened to call for a State inspection/review. Yes, my previous employment at a nursing home had some advantages. I was fighting mad. I even strongly considered changing hospice providers. The only reason I didn't was the stress and anxiety it would cause my hubby. He loves his nurse and the rest of the staff.

We finally got it all straightened out and CNA services have been restored because of an aide from another county who'd taken care of him on occasion volunteering to care for him. Yes, she would be paid for her services by the company. She had her first of regular visits with my hubby on Friday.

I greeted her at the door with a giant hug.We both thanked her profusely. Eventually, she'd heard through the grapevine what the company was doing to us courtesy of my #2 daughter being very vocal about it at work. This aide was outraged and volunteered. Talk about a godsend and answered prayer.

She came in and hugged us both. She'd driven an hour to get to us from her county to be with us and care for my hubby. She explained how she talked to the administrator and director of nursing. How I didn't have fleas or anything else. How we were the best type of clients to have. How, yes, the house was messy but she'd been in far worse and at least I was attempting to keep the house clean. We were just two elderly folk who needed help to do these things and had none or limited access to.

As she spoke the tears rolled down my cheek. At last, somebody who didn't judge or feel sorry for us. She saw things as they were and didn't mind voicing her opinion about it...just like me. Somebody, an outsider, who truly understood that I was doing the best I could do with what I had left. No everything wasn't perfect and probably wouldn't be ever again, but that's okay. She even offered to come over on her day off and hit the areas which had fallen through the cracks. God will surely bless this woman because she offers her service from her heart and because it is right to do so.

Nothing is impossible with determination and getting fighting mad doesn't hurt either.

Sunday Stroke Survival ~ Too Many Doctors in the Mix

There is a small, orange pill on the market that does a jam up job as a blood thinner called Plavix. It's a shame I wasn't on it at the time of my stroke or I might have been delayed my family history catching up to me. I had been on it for years prior to too many doctors in the mix. Here goes my story...

In 1998, my blood tests came back with cause for concern. I had a very high red blood cell count. So I was diagnosed with erythrocytosis (uh-rith-roh-sie-TOE-sis). A big word meaning high red blood cell count. I was put on Plavix to thin my blood because I was allergic to aspirin. Considering all the chemo I had received during my cancer treatments, I thought this was good news, but it wasn't. Now my bone marrow was producing too many of them. My blood was clotting too fast. I had, in fact, thick blood.

I was in the third vial category.

Fast forward to 2000. It was a Jo massive trouble year with my heart attack blowing out two valves in my heart and damage to the muscle. Not to mention an abnormal pap smear leading to a hysterectomy, bladder and bowel resection thanks to five tumors in my lower abdomen, AND an abnormal mammogram leading to the diagnosis of breast cancer. Yeppers, it was a red letter year of huge medical expenses and surgeries. A good thing I decided to retire starting in January that year. I wouldn't have had time to work.

If I had not already been on Plavix, the cardiac surgeon who put in the stent in my Left Coronary Artery (LCA)would have. He also told me that my "thick" blood shouldn't be a problem anymore since he fixed the artery carrying oxygenated blood to the heart. If I had no further problems with high red blood cells, I could come off the Plavix in five years. The thinking at the time was five years and has now been extended to ten years, but none of my doctors knew that.

Fast forward again to 2006. After having reconstructive surgery on my breasts after the previous cancer, I didn't expect to have to go through it all again. I did, but this time I opted for radiation treatments. To heck with reconstructive surgery afterwards.

After I'd beaten the BIG C for the fourth time, I started to have issues with my bowels. I got a referral for an internist. He read over my chart carefully and decided I needed a colonoscopy. If you've never done this prep be warn...it's bad! After it was over, the good news about no polyps, and I was in his office again he was deciding what to do. He wanted me to take prescription strength Prilosec. Two capsules would equal six over the counter capsules.

There was just one problem. Prilosec was contraindicated with Plavix. He saw that it was over five years since my heart cath with no problems other than a very irregular EKG and I was on medication for ventricular fibrillation. He stopped the Plavix so he could treat me for gastric reflux and irritable bowel syndrome.

My cardiologist wasn't really happy about this six months later, but all my blood work looked good except for my cholesterol being high. I'd tried statins to lower my cholesterol, but developed severe leg and abdominal cramping. Heredity was at fault because of my Germanic heritage. The statins were stopped. She put me on six capsules of triple omega capsules a day and a strict meatless diet. Still my cholesterol was almost 300.

Very slowly over the next six years my erythrocytosis returned. My cholesterol levels still weren't great but they were the best they were going to get without statins. A bad genetic heritage led up to my stroke in 2012.  A small clot formed in my heart and went to my brain. The GERD and irritable bowel medication was stopped and I was put on Plavix again.

Now my stomach burns while the doctors search for a medicine I can take to counteract the problem while being on Plavix, because I won't come off it again. I can't take the chance. I never venture far from home unless I know where the restrooms are. It's like those commercials for Crohn's disease, except I don't have Crohn's. So if you see me making a bee line for the bathroom, don't stop me to chat.

I should buy stock in Tums, but can't. The good news is there is no sign of fragile bones or osteoporosis on my latest bone density scan. All that extra calcium is being put to good use. And, I don't get gassy like I do when I take the oyster shell calcium supplements.

So for now, I take my Plavix each and every day. Who knows the next stroke, I may not survive another day to keep fighting.

Nothing is impossible with determination.

Sunday Stroke Survival ~ Yes, You Can Be a Television Star Too!

You: "Huh? What? I'm nobody. How can I be a star?"
Me: "With telemedicine, my dear."
You: "What's that?"

It's a thing out of old, science fiction novels or World Expos. The wave of the future but in our time. It's now the new buzz in medicine. A way of seeing a specialist in another town or even state to get appropriate treatments and diagnoses all via a television screen. Actually, it's more like a computer monitor. But hey, look at all those YouTube stars. Some have even gone on to real movies and star in their own movies, right?

I first saw the commercial for this system about two years ago. Where I live, there are a ton of blink-your-eyes-and-you've-missed-them towns. They are serviced by clinics from various hospitals and doc-in-a-box type emergency centers. Just after my stroke of a woman in Waycross being diagnosed with a stroke, via this technology, by a Savannah (the nearest "metropolitan" town) physician. That's over 200 miles away.

Thanks to modern technology and the internet, which hear tell Al Gore invented. (guffaw) Even if you live in one of these small communities, you can get access to top notched medical care. Scans, physical observation of a patients, and test results all in real time. No more waiting to have them sent and waiting to get an opinion, waiting for the specialist to have an opening for a consult, or wasting valuable time. For a person suffering a stroke, every second is brain death and a longer recovery time.

Luckily for the woman mentioned above, there was a happy outcome. No permanent damage or disabling effects.

Can you imagine what this advent in modern technology could mean in the long run? In my earlier life, I was a life RN/Paramedic. I was the doctor's hands and eyes on the scene. Via a radio, I would describe the scene, mechanism of injury, and the patient's condition. Provided we weren't surrounded by hills and inclement weather, I was always able to reach a physician for more than the usual protocols. What I wouldn't have given for the doctor to see what I was seeing. Now, imagine if I had a satellite smart phone to send images as well as my description. It would be a chance in the race against death. No more second guessing myself after a patient died. It would have saved me a bunch of doubt over fifteen years, but back then, it was all we had.

Yes, you too can be the star of your own real life docu-drama. When seconds count, this technological advance is a godsend. Let this fifteen minutes of fame live on and expand. That's my two cents and with inflation, a quarter.

Nothing is impossible with determination.

New Release~Stroke After Stroke: A Rower's Pilgrimage by Barbara Polan

One of our stroke tribe has written a new book! Stand up an take a bow Barbara (Barb) Polan. Welcome to to world of publishing, Barb. You're in good company. Can you tell that I'm excited for her?

• Title: Stroke After Stroke: a rower's pilgrimage
• File Size: 5062 KB
• Print Length: 131 pages
• Sold by: Amazon Digital Services, Inc.
• Language: English
• ASIN: B00NDF3BH8
• Price: $4.99

Available in Kindle version
Paperback coming soon

Amazon Description

Stroke After Stroke is the personal story of a recreational gig rower who survived a stroke at age 52, and of her relentless pursuit of recovering from the resulting hemiparesis (the loss of the use of her left side) even 5 years later, despite the medical establishment's stance that recovery for her has already ended.
Based on the blog she started 6 weeks post-stroke, the book chronicles how Barbara Polan has faced the losses concomitant with her injury, and the struggles of incorporating current recovery therapies into her attempts to resume her pre-stroke life. In the process, she re-shapes her new life into one that better suits her.
She has written the book she had hoped to read immediately after having a stroke.
Barbara has first-hand experience with the relentless repetition needed to establish new neural pathways that are needed to regain lost functions, and promotes investigation and optimism as necessary ingredients in any recovery. In addition, she offers helpful information and insight into the logistics and the emotional reality of survivors' altered lives, along with helping survivors understand that they are not alone.
This book will be appreciated by anyone whose life has been affected by stroke - survivors and their caregivers, family members and friends. 

 ~*~

This is her first published book. Let's wish her well and much success. Run. Don't walk and grab your copy today. She's already got 1 Five star review on this masterpiece.

Amazon.com  for the book

Contact info to find out about Barb:

Her blog

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Sunday Stroke Survival on Monday :)~ Less Tolerant with Age and a Rant

Oops, I forgot to hit publish so for this week Monday is the new Sunday.

As the years go by especially since my stroke, I find myself less tolerant of what comes out of the mouths of others.

That one line in the movie, Forest Grump... 

"Stupid is as Stupid Does"
Forest actually had more common sense in his damaged brain than normal people thanks to his momma.
It hits me in the face when I'm around other people. Is it any wonder that I prefer my own company rather than be around people? At least I know the cause of my stupidity. I've got brain damage.

Why do people think that the hardships they endured for a couple months with a broken arm or leg, entitles them to compare it to my paralyzed arm or leg? Can't they accept the fact that it's like comparing apples to oranges? It's like comparing a stubbed toe to a compound fracture.

I know first hand the trials of broken bones. I broke my wrist. Seven bones broken and/or dislocated. Six weeks total and the wrist was almost as good as new. I tore my Achilles tendon in my left ankle and spent fifty-three weeks in an air boot.

A post stroke paralysis and the spasticity cannot even compare to those. Time to healing cannot be measured in weeks but years if ever. Weeks are a drop in the bucket in comparison.

Sure with a broken limb, you might have had pain. You had the inconvenience of a cast or splint.  You had that unscratchable itch. You may have had the inability to do certain things or figured out a way to do them. BUT you knew it was only temporary. Eventually, your broken bones would heal and you'd be free to carry on with your life as before. That's the BIG DIFFERENCE.

As stroke survivors, we have no such assurance just a possibility and hope. Sure a broken limb my feel like forever but in reality it's a drop in the bucket of your life. Stop the comparison!

Sunday Stroke Survival~ If All Else Fails -Punt

I've heard from so many about my ability or ingenuity in dealing with my stroke and life. Personally, I take no credit for it.

I glean information from all sorts of sites on the web to form my new ideas or ways to do things. I know what I want to do and know that I'm not the only one facing these issues. Somebody somewhere has to be talking about it. That is the truth. I spend hours in research and following tangled strings to form and rough working something to substitute for what I can't do.

That's not to say I'm not creative, because I am. I was looking out side the box when my #2 daughter was diagnosed with Juvenile Rheumatoid Arthritis way back in the early eighties. Not to many people knew that kids got it and so young. My daughter was 2 years old. She was facing a lifetime, until she would be 16 and not be considered a juvenile anymore, of physical therapy exercises that hurt twice a day, blood work every four weeks to check medicine levels and kidney function, multiple scans and x-rays, special diets, immunoboosters, and splints and braces. That was on top of regular kid stuff like Chicken Pox and school.

If something is fun then most people don't mind if it's something they have to do. Have you ever met a child that liked taking medicine four times a day, even if it's the orange flavored Children's aspirin. At two, she took a whole bottle of 30 tablets each and every day.There's only so much a kid or an adult will tolerate under normal conditions before they will revolt. I wrote nursery rhymes that went along with her physical therapy exercises in an attempt to make them more fun for her. It was more fun but still painful and boring in a ten year time frame.

I'm a firm believer in..."When all else fails PUNT!" Life isn't fair. Life is not some trouble-free zone. Stuff happens.

For me as a child, I never once asked to be put in harm's way. Neither did my parents. But stuff happens.

As an younger adult, I didn't ask for half of the things I went through. All right, I'll admit to setting myself up for some of it. Everyone makes poor decisions at some point in their life that sets themselves up for a tumble or three.

My father always says a cold is trying to catch him because nobody in their right mind would want to catch a cold. The same goes for most bad things that happen to "good" people.

Didn't you see me as a working minister, author, and full-time caregiver jumping up and down two years ago when a stroke was looking at who to strike next. "Ooh! Ooh! Pick me! Pick me! I can't wait to have a stroke of my very own!"

Yeah, right! You must be crazy!

But the fact is that I did have a stroke. I remember thinking the next morning, if I did have a stroke, I did something right because it wasn't that bad. But then it got worse. I progressed from weakness to paralysis. Yep, I was the idiot who was jumping up and down saying, "Pick me!" and it did.

Punting Away a Stroke
As the weeks and months progressed, my stubbornness kicked in. But there's only so many times you can make applesauce, lemonade, and punt...but I'm still punting. I'm up to my eyeballs in applesauce and have constantly puckered lips from all the lemonade. Still I continue to fight.

After all, A failure is only a failure if you let it be. If I try, fail, and give up then I'm a failure.

Can you really accept failure in your life? Are you this sad sack, who simply let's their failures pile up around them and say, "Woe is me."

How long can you keep that up before you try to figure out another way? I know some people in the real world who can stay in that position for years. Nothing is their fault. Not even a smidgen.  Everything bad happens to them and only them. I'll bet you can think of a few too. Can you stand to be around them for very long? Me neither. That just ain't me.

• Find a teeny tiny positive in your situation. Grab a hold to it and squeeze it for all you are worth. For me, it was being surrounded by caring people who could laugh and being able to laugh at myself.
• Find a bigger positive and repeat. Before long you've squeezed that into nothingness, so you begin to actively search for positive things to cling to because it feels so good. For me, if I wasn't dead then there was the hope of recovery or adaptation. Even though at times this was more of a curse than a blessing. Perception isn't always reality.
• Find a couple of positive things and keep searching. Before long you will be finding more than you can hold. For me, I was grabbing like a starving man at an all you can eat, free buffet.
• Nothing is ever ALL bad or ALL good. There's always the flip side. You just have to look for it. No, I'm not going to say the silver lining because there is no silver lining surviving a stroke other than surviving. It just is what it is.

So that's how I did it and doing it. If you really want to do something...do it. God gave you a brain too. Although not as intelligent, or as beautiful as mine. (batting my eyelashes at you) Oh, smile! You know you want to.

Nothing is impossible with determination.

Memorial Day~ The Happy/Unfappy Anniversary

Memorial Day will never be the same for me ever again.

Yes, it's that time of year we remember all our fallen comrades (especially family members), but for me, it's a happy/unhappy anniversary as well.

Two years ago, I had a stroke. It is a day to remember in infamy. My life was changed forever.

Two years ago today, I was lying on a hospital bed. No one had uttered the word stroke or CVA to me. Somewhere in the deep recesses of my mind the thought was that maybe I'd had a TIA, but no way did I have a stroke. It would be another two more days before an MRI proved it, but still nobody said the word. This irritated me a bit because I had no "official" word just me trying to think with my nurse's brain what was going on.

Yeah, I had difficulty moving my arm with purpose and a leg that felt heavy, but still I was thinking TIA. It would all come back eventually. After all, my blood pressure wasn't that high. I had run blood pressures much higher in the past. I didn't have the headache that so many people do. My blood sugar was stable again. I'd be right as rain in a day or so, or so I thought because nobody was telling me any different.


That wasn't the case. On night three, I was in pain. I couldn't get comfortable, my head

hurt, my vision was blurred, I couldn't speak, and I couldn't move anything on my right side. The MRI the next day showed the stroke. A small bleed which closed itself. Just enough blood to kill the damaged neurons from the clot and take some more ability away.

Why did I have to wait for a MRI? Because it was Memorial Day holiday. The MRI tech had a long weekend.

Yeah, I'd had a stroke big time. There was no doubt in anybody's mind even mine, but still nobody said the word at least to me. I knew I wouldn't be going home anytime soon. It was early evening before the neurologist said the word and she asked me where I wanted to go for in patient rehab on day four!

I told my family using one handed hand signals "goodbye" and "I'd see them soon." I was whisked off to In patient rehab the next day to learn how to walk, swallow, talk, and basically care for myself with half a functioning body. I was trying to be strong for them even though I was terrified and full of doubt.

After two years, the doubt of fully recovering what I lost is still on the back burner of my mind. But I weigh heavily on my mantra which carried me through four cancers and assorted hairy situations: 'I'm too mean to die. I'm too stubborn to give up. And lastly but more importantly, I'm in God's hands.'

That pretty much covers all the bases. I remain hopeful and positive. No matter if that little devil on my shoulder occasionally pricks me with his pitchfork. Negativity breeds discontent, pain, anger and a whole lot of self filling prophecy which is bad. Yes, I do have moments of weakness too. Where doubts, fears, cry, get angry, and negative feelings creep in. I am only human after all.

I just refuse to stay there. Every new day is open to new possibilities to achieve a semblance of normalcy. With each new day, brings hope and thankfulness that it wasn't worse. Each new day is fresh and waiting to be experienced. Yes, it might not always be pleasant, but soon it will be tomorrow and the past. Only to be remembered on a memorial day and being thankful for the pain that is past with a sense of gratitude. With a reminder, each day is meant to be thankful for the sacrifices of yourself and others that brought this dawn.

Nothing is impossible with determination.

Sunday Stroke Survival~Tired to the Bone

Chronic fatigue is my added devil from my stroke. Paralysis being #1. All in all if I wasn't so tired all the time, I could actually do more towards recovery and a lot of other things. Compounding my stroke is a bum ticker which also causes fatigue.

I'll admit my fatigue is not as bad as when I had my first stroke almost two years ago, but it is still my Achilles heel in productivity. Just after my stroke, it was a hour long nap, at least, after two hours awake. After month post stroke it was an hour nap after three hours awake. I gradually progressed to five hours awake with one hour nap. All of that is with 6-8 hours of sleep at night.

My progress with wakefulness and energy was set back in December with another small stroke, but not bad. I was at four hours awake and one one hour nap. Thirty minute or twenty minute power naps are like nothing and don't help. Not like they used to. I used to be able to take a power nap, awake refreshed and conquer another eight hours of work. Now I'm back again up to six hours awake and a two hour nap. That almost two naps a day!

Of course, all the muscle relaxers don't help the situation. 80 mgs of Baclofen, 16 mgs of Zanaflex, and Valium, all work against me too. But I've been on those high doses since I got home from the rehab hospital so my body compensated for it. Also with the amount of high tone, spasticity, and Clonus I have eats those drugs up. The February Botox injections have worn off to where my arm is back in its 90 or greater degrees cocked up position, tight against my chest, and almost no possible extension of the fingers. The wrist doesn't move no matter how much Botox it gets. When I mentioned the amount of muscle relaxers I was on to my husband's social worker yesterday, her mouth dropped. She uttered, "And you are still awake!"  Obiviously. I was talking to her.

Having this fatigue and caring for my husband is a mad juggling act with medicines given every 4-6 hours. I push myself to stay awake often falling asleep at my desk and awakening with a start. I imagine the stress and these drug passes are weighing heavily on my fatigue issues too.

I have always looked at sleep as something I needed to do, but could do without. For decades I proved myself right by fully functioning on four hours of sleep a night. I always said, "There's time enough to sleep when I'm dead" and kept on pushing. Now, that's a long forgotten memory. Just when I need it most. A challenge at best.

I found eating kept me awake, but that only compounded my obesity problem. Knitting works, but the last couple of days I've found myself nodding off over my loom. Jerking awake causes nothing but more problems between the high tone, spasticity, and the Clonus. My leg will be bouncing up and down, and my arm will pull up tight against my chest almost to my chin. It takes almost thirty minutes to relax the arm enough to bring it down to a fairly comfortable 90 degrees.

Why is it that when you use one of your paralyzed limbs the other paralyzed limb's tone is affected too? If I walk, my arm tightens and draws up. When I stretch out my arm, my foot will arch more to the inside. It's like the puppeteer's strings are wrapped around each other. Doh! Confused neurons firing into the dead portion of the brain sends crossed messages. I answered my own question, but it doesn't make it any easier to accomplish anything. All of this extra action saps my energy too.

So how do I accomplish anything?

As I've said before, it's all about balancing. I've added tightrope walker to my master juggler status. Because with chronic fatigue, you walk a thin rope of energy and ability to do. There is a long list of things which HAVE to be done.

The Steps

• Know yourself
• Make a list
•  Break the HAVE TO DOS into manageable segments

Once again, I'm using me as an example.

I know me and have had enough practice with my available energy level to accomplish tasks. I also know how much energy I spend doing certain tasks. I use my heart as a monitor for energy expenditures. My heart will override its medicine to control the rate when I push too hard or expend to much energy. I can actually hear my heartbeat in my ears when it gets above 100. It's not hard to count your heartbeat when it's drumming in your ears. I have to sit and rest to get it below 100 because my cardiologist says it puts too much strain on my bad heart. I can see her frowning when I'm at 104 let alone at 150. I do what I have to do first upon waking up my brain so it will function properly.

My Honey-Do List for the week
*Fix breakfast
*Medicine passes
*A diaper change for him
* Feed, water, and love on the animals (rabbits, chickens, cats, Guinea pig, and and dogs) 2x day
*Empty the urinals (I have two so I don't have to do this but four times a day)
*Empty the bedside commode and wash it
Grocery shopping
Computer time-emails, blog, forums, games, etc.
Pick up medicines from the drugstore
Buy two skeins of yarn from WalMart
*Fix lunch or fly to get it
*Fix dinner or fly to get it
*Spend additional time with hubby
Work on Christmas presents (shawls, caps, and scarves)
Buy hubby some more pajama pants
*Check and refill humidifier on hubby's oxygen condenser
*Rehab exercise 2X a day
*Hospice schedule (CNA, nurses, social workers, clergy, volunteers, sitters)
Kill the swarm of fruit flies without spraying
Wash dishes
Vacuum the carpets
Clean the litter boxes for cats and rabbits 
The garden

All the things  marked with an asterisk have to be done daily and sometimes multiple times a day. All others are optional to a point. I look at my list and put numbers to prioritize the tasks and see what can be put off until the next day or next week. It's my front seat/backseat method in infinite detail.

The medicines he can take by himself are in a pillbox for the week. That way I know what I will run out of first for reordering and can tell his nurse when she comes. I never wait until the last minute to do this because she may have to get a prescription signed by the doctor first especially his morphine. Some, like his morphine, have to be measured and given to him.The same goes for my medicines.

Grocery shopping is a HUGE energy expenditure for me with bottled water and soda pop.  This is a one time event that leaves me wiped out for the day. Even with me riding around in the store on one of those scooters, if I can find one. I shop at Winn Dixie because it's an older, smaller store and it's close to the house. I asked the manager if I can use one of the bag boys to help me shop for the big items like Coke Zero (hubby's fav) or water. They load it into a big buggy and roll it up yo the front of the store until I'm ready to checkout. This helps a bunch! But still I'm juggling pennies to buy what I need as I go through the store.

My drugstore is CVS. It is conveniently located across the highway from Winn Dixie and it has a drive-in window. I can either drop off my medicine bottles before hitting the grocery store or call in my refills with a pick up time after I finish my shopping. This is a time  and energy saver. I don't have to park my car, go into the store, and walk to the back of the store to pick up my prescriptions. It's a one-two-thank you ma'am.

I've got this routine down to a science now. I can do this and be home before the CNA leaves. The real chore besides shopping for groceries is getting them inside and put away. Yes, I could lug each and every carton and bag inside, but I don't. I stick my prescriptions into my purse and open the door. I had Triston (#2 grandson) bring my little red wagon from the garden and park it by the front door. The first thing to come in after my purse and cane is the cold stuff for the refrigerator and freezer, and putting them away. After bringing this in my heart is drumming like a rock band, so I need to sit down for a while.

I still manhandle the 24- packs of water because otherwise it would be lift them into the wagon, tugging that weight up the ramp, and then unloading it into the house. That's too much. It's easier to pick one up and put it down several times up the ramp and into the stack of water bottles. Or like I've done the last two weeks in a row, wait until my daughter comes to bring them in. The heat or cold won't hurt them if they stay in the car.

Going to Wally World stresses me out, but it's a necessary evil at times. To give you an idea of how frequently I visit that store...6 times in almost 2 years. It's not a bad store, but it's HUGE! Most times no scooter is available which means walking. With the threat of pressure sores on my foot, that amount of walking is detrimental to my health. In variably, what I need is in the back of the store. So this particular store is a last resort for me. It's too hard to move around. Logistically, it is far easier to go to Family Dollar or Dollar General for most of what I need. AND forget about Target for the very same reason. They take up too much of my energy reserves. Nine times out of ten after a grocery shopping day or WalMart, I have to come home and take an extra nap just to make it to bedtime.

Yes, fatigue is s-o-o-o much fun. The idea of not getting up and putting clothes on at all is a pipe dream. I know many are juggling work and family, but I'm thankful I do not work or have any other family other than my hubby to take care of. I don't think I could do it. Yes, nothing is impossible with determination, BUT there are limits if I'm to do what needs to be done. Some have time limits and others do not. Some times are self imposed and others are not. I tend to have some wriggle room with the self-imposed times just in case I have to change his linens in between the CNA doing it. It's happening more and more. My poor daughter has had to wash all the blankets twice in a month because of them. I have three for his bed.

Having a fatigue problem is a royal pain when life gets in the way. But with knowing my limits, juggling tasks, and break it down into manageable segments, it is doable. Some days are worse than others but it is a constant element in my life. Challenges make life more interesting, with all the hats I wear, and things I face daily that I'll be never bored.

Nothing is impossible with determination.

Sunday Stroke Survival ~ Sailing Through Life with Disabilities

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