Tuesday, May 27, 2014

Tuesday Tumbling Term ~ Tribe

It's been a while sense I've done one of these.The word for today is Tribes.
noun: tribe; plural noun: tribes
    1.  a social division in a traditional society consisting of families or communities linked by social, economic, religious, or blood ties, with a common culture and dialect, typically having a recognized leader.

We form all kinds of tribes during living our lives. We work. Places we live.  We have varying interests, religions, political alinements and play.The sense of belonging is an innate need in humans. For example, I belong to several tribes of people who mesh with my life: Christians, ministers, writers/authors, business women, homesteaders/survivalist, chefs/cooking, knitters, spinners, stamp collector, stroke survivors...yada yada yada. The list could go on forever for me. I rarely meet a subject that I don't want more information on or support. By support, I mean support as a two way street give and get.

Of course, I'm talking about communities. For the past two years, since my stroke, stroke survivors have been a major "belonging" tribe for me. Everyone's lost may be different because it depends on the location of the brain affected but the sense of loss, frustrations, achievements, and sometimes anger are all being vented to somebody whose walked in your shoes. That's a major perk of the internet. I can reach across the globe, if necessary.

With writers/authors, it has and always will be Compuserve's Books and Author's Forum. I've been a member for over twenty years. With stroke survivors, it's a small group of new friends who blog and keep tabs on each other in email like Barb, Dean, Amy, and John to name a few. With spinning and knitting, there's Raverly.

Facebook, twitter, Google+ to name a few are great for meeting people and just general stuff but is that really a community? Yes, you add friends and delete friends, touch bases with family and friends but what if your need is specific? Tribes are the way to go.That's where the real help and support are. That's just online. 

I do have real face-to-face contacts also. There's nothing like speaking/emailing to someone that's there or has been there/done that. "Oh my goodness! You actually meet people face-to-face?! Yep, I do. I don't discount the power of actually looking into someone's eyes and physically touching another soul. I have local groups for writers (some very well known), stroke survivors, and even fiber artists. We get together as often as we can.

They are my tribe...I think I'll keep them.

Keep writing and loving the Lord

Monday, May 26, 2014

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, May 25, 2014

Sunday Stroke Survival~ Type of Typing

An interesting discussion ensued in one of the stroke communities I'm involved in. Whether the Dvorak or QWERTY is easier to type with one handed. My answer is... it depends.

I have gone round and round this discussion since my stroke left me with only one functioning hand. I'm a dyed in the wool QWERTY fan. With two hands, my WPM speed was 120 WPM. With one hand my speed has increased to 40 WPM. I'm still striving for the 60 WPM mark but it will take some time just like reaching the 120 WPM speed was with two hands. It's a goal with no time line. I will get there.

Dvorak keyboard
After saying that I'm not totally against the Dvorak system either. It's just another way to type. I know some people love it while others like me shy away from it. I just have to relearn and learn so many things Dvorak is low on my want to learn list, but not as low as playing the violin.

I tend to take the path of less frustration these days. Lord knows, there is enough frustration accomplishing daily tasks after a stroke without adding one more. Still after almost two years post first stroke, the idea of learning a new way to type is daunting to me. A lot of what I do is try and try again. I'm too stubborn to give up.

I've written several blogs about it HERE, HERE, HERE. Working with a smaller keyboard helps immensely! Of course I do miss some of the keys my bigger keyboard had. My major malfunction was I'm an old dog trying to learn too many tricks. I'm not too stubborn to admit that Dvorak might be easier to type one handed. But my hands know QWERTY although my finger placement is different than before my stroke. DOH! I'm one handed and not a one finger typist. To me, that's a major accomplishment. Now if I could only get my spelling and grammar up to speed I'd be content.

The old adage, "if it ain't broke-don't fix it" comes to mind. But the fact is I'm like Humpty Dumpty in more ways than one. I'm broke and can't do anything the same way I did before pre-stroke. A stroke will do that. So I latch on to what is familiar and comfortable... QWERTY instead of being an innovator with Dvorak.

I'm not saying that I'm no longer an innovator because I am in so many ways, but my typing I'm not. I have grace enough to admit it. I'm not perfect nor do I try to be viewed as such. I'm stubborn and set in my ways not to mention doing QWERTY for over forty years it comes second nature to me. I can be a cantankerous old fart at times. I just can't justify the need to learn a new system of typing.

If you are not a cantankerous old fart, stubborn and set in your ways, or are a born innovator try Dvorak. I hear a bunch of praises of the system from the one handed community. After reading about it, it looks interesting like so many things do to me. It's a passing interest. One on my list to try in the future. Just not today.

Nothing is impossible with determination.

Sunday, May 18, 2014

Sunday Stroke Survival~ Gonna Take a Sea Cruise?

In a previous life's career, I was a disabilities coordinator for a local college long before ADA came into being. I was also a consultant for Carnival Cruise lines in the area of accessibility for disabled persons.

You see, I was disabled prior to my stroke, but for the most part it was an invisible disability. I had rods and screws in my back and artificial joints. I was well qualified for the positions and also well versed in ADA.

There are several things you must do and realize before you take a cruise.

Ships are internationally registered and are not subject to ADA (Americans with Disabilities Act). They do not legally have to make concessions for you as a disabled person. Things like accessible bathrooms and elevator access are offered as an added benefit to customers.

Forewarned is forearmed. Ask before you book your trip and find out exactly what accommodations they offer. Saying they accept disabled persons or have reasonable accommodations is not enough.
  • Access onto and off the ship. How to get around the ship. How big is the elevator?
  • Bathrooms around the ship with accessibility. You might not be close to your room when the urge to go hits.
  • Dining options
  • Excursions- remember you are going to a foreign country. ADA does not apply. You may want to go to the underwater aquarium in the Bahamas but be aware the circular stairs going down are going to be accessible with a walker or wheelchair. Transport to various sites are by taxi, boat, or bus.
  • Your room- The room they designate for handicapped passengers may not be any bigger than a standard sized room. The bathroom may have handrails and a walk-in shower. This does not mean a roll in shower. If you require a bath stool, more than likely you will have to bring your own. Ask first.
  • How far is the elevators to your room? Most cruise books have drawn layouts of the floors but that does not tell you distance.
  • How much does the boat rock in rough seas? Balance is of the utmost importance to prevent falls. Several of the larger cruise liners have stabilizers which minimize the rocking under normal conditions, but hurricanes, squalls, and assorted other weather conditions will provide you with a challenge in motivating.
  • How available is the staff to help you if the need or an emergency arises? While a cruise line may advertise 1 crew member per 10 passengers this includes maintenance, laundry, kitchen, and other staff.
  • If in doubt ask around. Find a previous person who has cruised on this ship before preferably one with disabilities similar to yours.
Some horror stories about cruising with disabilities that I encountered on various cruises.
Nothing like the ship breaking down or sinking that has hit cruise liners for the past couple of years more inconveniences with being disabled. While working for Carnival I cruised on four to five cruises a year to various destinations. Carnival is the largest cruise lines which owns several other companies.

I cruised as a secret shopper to see just how well Carnival's ships stacked up to the ADA challenges. While some engineer or legal beagle could tell or do what accommodations should be made, it is totally different than being disabled cruising on their ships. I reported directly to the president's office with no one else the wiser. With Atlantic, Caribbean, Canal, Alaska, West Coast, Mediterranean, and Asia to choose from I never cruised the same ship twice unless requested to do so. I always booked a handicapped room. It costs more but it's more centrally located. This was a perk.  But I digress...

We were practicing the emergency station drill. Where was my emergency station? Up two gangway ladders. I couldn't climb stairs.

I was snorkeling in Cozumel and dislocated my artificial hip. I was 200 ft from shore. Once back on shore, I popped the hip back in place. I spent the next two days of the cruise in a wheelchair.  Traversing the ship by manual power wheelchair is a trip. When the ship is the length of two football fields with multiple levels, you'll definitely get your exercise just going to dinner.

The onboard doctor is used to treating seasickness, but can halfway handle bonafide emergencies. He is expensive!

Carry the bottle for all prescriptions including over the counter drugs. Customs, Immigration, and drug enforcement officials may board any ship. One of those weekly pill caddies should be left at home. Different countries have different ideas of what constitutes an over the counter drug. I was detained and questioned.

While invisibly handicapped, I was ushered to the disembarking exit only to be confronted with a long set of stairs at the end of the cruise. It meant going against the stream of disembarking passengers to back track to an elevator. "Excuse me, pardon me, ah heck get outta my way!" One hundred tromped feet later, we were at the elevator.

Once, a fellow passenger slipped and fell in the shower. He died. It just so happened that he was in the room across from ours. The entire passageway was closed and we weren't allowed out of our room for four hours. No drinks or food until the body was removed. It turned out the passenger had a heart attack in the shower. I should mention that this occurred at our scheduled dinner hour. I also had two of four young daughters (10 and 12) with me. Really tight quarters.

Like I said previously, no mechanical difficulties or the ship sinking, but I can only imagine what the cruise would be like for me now with one side paralyzed. While I've been tempted, I haven't gotten the nerve up yet to try cruising again. Then again, I'm older and wiser now. Nah! I'll keep my feet on shore for now. Now cruisin' by car is another story.

Nothing is impossible with determination.

Wednesday, May 14, 2014

Wednesday Writerly Ways~Oops, Was it Something I Said

I sure hope so.  I know I've been absent from this blog hop for a while but an email this morning got me thinking.

I read all emails and comments with a grain of salt. Some emails and reviews are hopelessly hostile while others are good. Both are helpful and I'll tell you why. Comments to this blog are harder to judge, but it is still in the mix as feedback.

I always use me as an example. Zombie Apocalypse: Redemption has a 1-star rating. Not my proudest achievement. I finally got around to reading the reviews. The email was a follow up to the review. A friend emailed me with concern on how I felt about it.Yes, I'm slow and late to the party. Mainly because right now, I just have bigger fish to fry in my skillet of life in general. Yes, it stings a bit from my author point of view, but it is still one of my best sellers in fiction.

The comments, you don't have to go to Amazon. I'll post them here.
By John C. Brewer on February 8, 2013
Format: Paperback
I wish indie authors would take the time to have their work properly edited at the very least. Here we have a 152 page book (which is really short) self-published, on sale for $7.99 and the first two pages alone have enough grammatical errors to receive a failing grade in an English class. I applaud any author's attempt to get their work out there, and hope this author continues, but if English is not your native language you need to spend a few hundred bucks on a professional editor so people can see how creative you are and experience the magic of your story instead of being distracted by poor editing.
Format: Kindle Edition
Okay, so one line reads - "The guard outside the lab had said something about a world class The only thing he could the amount would be gym and track in silo #2." Huh??? I re-read it twice, three times, rubbed my eyes, shook my head to clear out the cobwebs and read it again. I am not making this up - this is exactly how it appears in the book (along with hundreds of similar lines). WTF - does this guy not proof read???? And, to top it off, sometimes the characters "talk" like hillbillies with a lot of "what do ya want"s and "is that how ya"s and "outta"s and sometimes not. I would not have given it even 1 star but apparently Amazon reviews won't let you give any thing no stars.
I support the "independent" writer and I don't expect everyone to be Stephen King but, come on, throw the reader a bone and at least make a stab at proof-reading - okay?
By Misselaineous on November 28, 2011
Format: Kindle Edition Verified Purchase
I have no idea if this is a good story or not. Between bad grammar and lack of syntax, there were the continuity issues, so I'm lost. Then there are the quotation marks in lieu of apostrophes. It"s driving me crazy. When I grammar/spell checked this review, it caught every one of the author"s errors. (It even caught my purposeful ones.) I must say I admire anyone for putting their "stuff" out there, but PLEASE, edit first. I had a writing teacher in college who said no matter how bright, funny, or insightful you are, if you can't speak or write properly, no one will ever know. I read this on my Kindle, so I'm using Kindle locations vice pages. So here are a few of the errors I've found...
Location 222: "Of course, they could have put a transmitter on her car or tracked her by satellite. minute, old girl. She was letting tendencies run away with her mind." I'm still not sure what this means even though I read it like 5 times
Location 233: "Whoa, wait a her paranoid." Huh?
Location 260: "There were six bedrooms upstairs. Their grandmother had twelve and raised all of them in the house." Did Grandma have 12 kids or 12 bedrooms, this house or another one?
Location 265: "She peered into the refrigerator and saw the box of specimens still waiting. Warning to the general attacks, and anyone who was bitten was to go directly to their nearest hospital." Continuity is totally lacking here, and elsewhere. I mean, the very next location is a newspaper article, I think?
Location 307: "How her mentor had asked her opinion, sent her samples, and how she"d gotten specimens from her cousin of victims." I had to read this sentence 4 times to make out the meaning.Was her cousin a victim?
I'm not sure I'll finish this one.

Really bad right?  I make no bones of having formatting issues with Kindle. It shows up fine with the proofreading before publishing but in the downloaded copy, it's a mess.

 It all depends on your point of view too.

My stance is a love it or leave it one, and not without some measure of gratitude. Gratitude? Yes, gratitude. I'll tell you why. The person took the time to write a comment. Some rather lengthy ones at that. And yes, I could come back with some scathing comments and excuses of my own, but I refrain. I know it needs work but I'm not able to do it right now.

Anytime you can get someone to comment, IT IS A GOOD THING. It's worth its weight in gold.Whether they liked it or didn't like it is for the most part irrelevant. Of course we'd all like glowing reviews, would we? That isn't always the case.

I've consider striking a chord with a reader a positive thing with readers where they feel compelled to comment. Is that a bad thing? One even took the time to spell/grammar check it for the review. Now that thorough. Time is everyone's most valuable commodity. That in itself earns my respect and a closer look. I won't make excuses. The book has some problems. Little did I know that I was suffering small TIAs during the writing and editing of this book. That only showed up in the MRI following my big stroke.

I've mentioned several times about comments to this blog being negative, but that also is a point of view thing.  Recently, real life has stopped me commenting on a lot of blogs that I usually do. For two months or more. With the juggling act I'm doing now, time is platinum. The best I can do is read the blog posts and sometimes comment. What do I feel the need to comment on. A blog that really twists my mind and makes me think. A momentary pause in what is happening around me. It has to make me take the time to give feedback.

My feedback-Sometimes it's a support thing, in gratitude for commenting so often on my blog, and the other times its because of a strong emotional response to either agree or disagree. The last is the greatest to me as a blog writer. It proves that I can touch people where they live.  The "Oops, was it something I said?" You betcha! Not really an oops because I did it on purpose...writer that I am.

As a blogger, I write what is in me to write. As a writer, I do the same. Comments and emails are always good feedback even the negative ones.

The one good thing of being the age that I am now is that I can audit a college class for free each semester. When I heal enough and after my husband dies, I may just do that for an English grammar refresher. I'd be going into it with fresh eyes having forgotten or misplaced most of it anyhow. It can only be a positive step forward, right? Death, for me, is the absence of learning.

Keep writing and loving the Lord.

Sunday, May 11, 2014

Sunday Stroke Survival~ Memory or Lack There Of

I don't know who drew this but it fits!
These days, you will often here me saying, "Of all the things I've lost,(with my stroke) I miss my mind the most." No, I didn't make this up matter how much it applies to my  current situation. It was first written by Mark Twain.

Having a mind like a steel trap, a sponge, a filing cabinet before my stroke I still have difficulty with memory. I call it my dyslexic/ADD brain now. I know I know what I know, but the trouble is finding the material I need at a given moment.

When I was a young child, mnemonics helped train my memory to what it was pre-stroke defined as a photo and phonographic memory.  I've digressed in time trying to retrain my brain. The only problem with mnemonics is that you have to remember what those letters or words stand for. I'll ponder the letters and can't remember only to get side tracked as a new image or thought flutters across my brain. Sometimes it's just easier to remember what I'm trying to remember. For example- mathematics order of solving an equation is parentheses, powers, multiple, divide, add, and subtraction. The mnemonic is "Pretty please my dear aunt Sally." Or something like that. I always found that mnemonic hard to remember even when I had all the marbles in my head.

  • Grrrr! Spilled Coke Zero on my keyboard last night and now the keys are sticking making my life difficult. That's what I get for being lazy and not dismantling my keyboard and cleaning it right away. Be back to memory after I do that.
  • Back! Geez, that was quick! Actually 3 hours have past.
It's like my beloved's former self. He'll hide important stuff in a safe spot. At the time he thinks it is a very safe spot and it makes logical sense. Like putting a prescription in the magazine (his) in he is reading in the doctor's office.  Days later, when I need to fill the prescription at the local CVS I'll ask him for it. He'll swear he gave it to me when I can't find it on the bulletin board. I in turn swore that he didn't. (He didn't) After thinking back in time, he will remember he put it in a magazine for safe keeping.

But which one? He couldn't remember. Then it dawns on him. It's in the Time magazine. I ask him, "Do you mean the Time magazine I shredded yesterday because you can you were through with it?" Yep, that's the one. It was a very logical, safe spot. Except now it is worm food and compost. After that I checked every page before shredding anything. Memory is fickle and fleeting.

Initially, I found it's easier to use post-it notes to jog my memory because I knew I had memory issues. There is only one huge problem with that. See the picture? Yep, they have a way of piling up.

Nowadays, I use a calendar with appointments on it. There are so many people coming in and out of our house these days, and my doctors to keep track of.

For where physical things are, I use one post-it note on a cabinet telling what's inside. I made it a habit of putting things in the same place every time.  Now after two years, I no longer need the sticky notes on where to find it. I still will get turned around and have to search for something, but not as bad. Even my car keys have a special pocket in my purse or a wrist loop on them. When someone else borrows my keys and puts them back in the wrong spot, the wrist loop will help me find them.

All other things like telephone calls or items I want to remember get jotted on a 5x7 note pad under my keyboard. Each day I date the new page or draw a line and write a new date. By date I mean month, day, year, and day of the week. I just can't depend on my memory anymore. Yes, it got soaked by the Coke Zero too and had to be transcribed again. A little extra writing time left hand can't hurt, can it?

When the notepad has no more clean sheets I write to beginning and ending date on the cardboard back. I'll double check to pages before I shred them. (usually after a couple of months) Because there will be little recall-able data after it's been shredded, put in the rabbits' litter boxes to be peed on or consume by said animal. I honestly wouldn't want to try, would you? Nah, I didn't think so.

So how do you restore memory? If I had the answer to that I'd be a gazillionaire. I wish I had the answer. Why does an Alzheimer's patient not remember their name but pretend to iron sheets all day? So many unanswered questions in this world and this is just one of them. All I can do is work at it each and every day. In business, it is location, location, location. Post stroke, it repetition, repetition, repetition.

Nothing is impossible with determination.

Sunday, May 4, 2014

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.

Saturday, May 3, 2014

Word Search or What a Difference a Stroke Makes

This is not a poor pitiful me post. It is what it is.

It was 3 AM when I heard a feeble cry for help come across the baby monitor this morning. I jumped out of bed and ran I rolled over, grabbed my AFO and shoes, donned my AFO and shoes, pivoted myself into an upright sitting position, stood up and hobbled to my husband in the living room. I was holding the wall for added support because my bedtime medicines of Valium, Baclofen, and Zanaflex still had its semi-potent sleepiness effect on me.

Normally this wouldn't be a problem because  I do it so much, but this morning it was killer. Last night about 11PM my husband upset his drink all over his bedside table soaking everything including his pill box. Four doses of meds gone. Poof. Up in the air like smoke. I'd just taken my bedtime medicines. I got him into a chair, clean up the mess including changing his bed and him, and got him back in bed and comfortable took up most of the lee time between taking my meds and hitting my pillow. I was an hour late because I was working on my sister's shawl pattern to place beading on it. I refilled his pill box and made sure he took his medicine before I wobbled off to bed myself.

I found my husband standing beside his bed fumbling with his bedding and bare butt mooning whoever cared to look. I asked him what was going on after installing him into the rocking chair and putting his oxygen back on.

Little Bit, the cat, had decided to sleep with her Daddy. She couldn't lay on the bed because her older sister, Patches, took up residence in the prime sleeping spot next to him. So she decided to sleep on his bedside  table across his knees. Being a cat, she will sleep anywhere she wants and gradually push stuff away making a comfortable spot. Well, this included a Coke Zero which was a half full can when he fell asleep. You can guess the rest.

After searching through a box of thirty-year old sheets, I finally found a twin sized set of sheets. Why did I search for sheets? All the twin sized sheets were soiled that I bought for his hospital bed. He was safely enshrouded in clean sheet that bear pink, blue, and aqua flowers leftover from our children's childhood. My night medicines are now down to a dull roar and it's almost time to take my morning medicines. If I go back to sleep I'd never wake up in time to take mine or give his.

I sink wearily in my office chair. My office is now located between my husband and my bedroom. I stretch the tense muscles in my neck knowing that a headache will form if I don't. I call it snap, crackle and pop but there is a term for this. I know there is but I can't remember. It's one of know that I know because I've used umpteen dozen times before. It drove me batty trying to think of it.

I make no bones about my cognitive deficit since my stroke. I have a real problem recalling data through the maze of dead tissue...otherwise known as my brain. I'm always searching for words meaning what I want to say. After thirty minutes, the word came to me ...CREPITUS! Thank you www.dictionary.com for how to spell the word from my mangled attempts.

crepitus  (ˈkrɛpɪtəs)
— n
1.     a crackling chest sound heard in pneumonia and other lung diseases
2.     the grating sound of two ends of a broken bone rubbing together 

As an author, many of us search for the perfect word to say what we mean. I was no different. Usually it meant editing a word ten times to hit the perfect word to say what I mean and other times it sprang instantaneously in my mind. Now, after a two strokes, the words just don't come that easily. Not without a pause, a half an hour, or maybe hours of searching. 

On a whole, I'm better than I was just after my stroke when every other word was a word search. Now, it's about every tenth word so I can at least talk in full sentences. So many times I have said, "This is not the right word, but..." when speaking to others and then They will tell me what the word is or understand because of the context it's used. I miss being able to do that. It's kind of a fill-in-the-blank type thing for me now. But at least I can utter more than 100 words.

It may be delusional, but that's my story and I'm sticking to it. Now that all meds are given and taken for the early morning rounds, I'm heading back to bed for a couple hours of needed sleep before it's up again in the life of an author, stroke survivor, and caregiver.

Anyhow, that's my morning so far. How's yours going?