The ongoing saga or insanity of my family, writing, living post stroke, and the world in general...I'd spend all my time writing if LIFE didn't get in the way.
Boy oh boy, when I do something wrong, I really do it. Today I was giving Babs the Bunny her brush out and I made a discovery. Part of rabbit grooming is checking their vent periodically throughout the day to make sure feces hasn't matted over the works. This is crucial for a angora rabbit like Babs is.
As it would happen there was junk matted in her hair. It becomes a whole huge production with one hand. Luckily for me she's a good bunny. I gathered the bowl of warm water and an ample supply of paper towels and q-tips. I placed her on her back on my now non-functioning arm with her head tucked between my arm and my side. Meanwhile I'm talking to her calmly and rubbing her belly. She likes that.
As I was cleaning her up, I pulled on her vent to make sure she was clean and out popped a tiny 1/4 inch penis. So long story short, Babs the Bunny is now Buddy the Bunny. I'm sure glad it isn't Spring when I would have tried breeding him. Oy vey! That would have been a nightmare! Now I know to purchase a Babs for him.
I find that I'm spending quite a few hours on You Tube these days. One because it's quick snippets of information and two because it's entertaining.
With my current lifestyle of crisis management and turn on a dime decision making, I can't really do much else that is time consuming. You Tube is the answer.
No this isn't mine but close.
I've watched tons of videos about square foot gardening... something I'm
going to try in the Spring to get a better handle on planting and
harvesting my above ground garden. When energy and time spent are
governing factors it made sense. I've also been researching how to build
a bigger cage for Babs, my gorgeous bunnykins, she's getting a bit cramped in hers, and different ways to
feed her other than store bought pellets. But that's not all...
I have to be honest here, I've been less than enthusiastic about my recovery of late feeling like somebody was kicking me when I was already out for the count. I ran across this particular video this week and it gave me a needed boost. While I've heard this song too many times on the radio, I never related what it could mean to me towards my recovery until I saw this video. A totally a eye opening revelation for me. It's my new favorite song.
Just the fact, that the video was pantomimed (actually singing although muted) by an otherwise 8-year old, nonverbal, autistic child got me thinking of aphasia affected stroke survivors and how it felt to me being nonverbal after my stroke but having a millions thoughts running through my head and not being able express them. My brain never stops thinking. The images may be of cancer kids but it could easily relate to us as survivors. Listen to the words. I hope it will do the same for you that it did for me.
I've been researching stroke recovery too. Reading blogs, abstracts, and books are okay, but nothing beats the visual progress of stroke recovery and adaptive techniques survivors use. As I've said before I have an incontinence problem, as well as few other hundred things wrong with my stroke. I try to apply what see and think outside of the box in all things.
For me, urinary incontinence is not really embarrassing but a nuisance. I hate wearing pads.I didn't like it when I had to wear them during my monthly cycles. God bless menopause and a hysterectomy. See some good things come with age besides hard won wisdom. I use all the techniques I learned in physical therapy like the clock and fluid intake measures. I may wiggle in my seat to see if I've got to go like a woman with a crotch itch in church. That's one way men have an advantage, they just scratch or adjust themselves in public and pinch it off with the handle they've got, but for a woman...it just ain't lady like.
But also for me, there is the added bonus of a diuretic, Lasix, which keeps the fluids from pooling in my body and my defunct heart. For the first few hours after taking that miraculous little pill that keeps me out of congestive heart failure most times, it's a crap shoot for bladder control. It's a fine art of juggling most mornings and I'll explain why and how I adjust my clock to cope.
I take relatively high doses of Zanaflex with my Baclofen for muscle spasticity. The Zanaflex drops my blood pressure too low when I lay down. We're talking about low double digits. To combat this before bed I ingest something salty before I sleep, this causes my body to hold fluids thus keeping my blood pressure raised. Not a perfect solution but it works. My cardiologist thought it was ingenious and great problem solving. But as a result of ingesting the added salt and retaining fluids, and taking Lasix in the morning becomes a nightmare while it tries to get rid of this extra fluid. I adjust my time schedule for the first hour for twenty minutes after taking this med. On average that's how long it takes for my kidneys with Lasix to fill my bladder. The second hour, I'll add ten minutes making it every thirty minutes. I'll keep adding tihis way until I'm back to the original every two hours time frame.
If I have to somewhere while this counting up is underway, I'll urinate before I leave and when I get wherever I am going and keep the schedule. I'll admit that some days are worse than others, but the important thing is, I don't let it stop me. If I don't make it to the bathroom, that's why I wear a pad.
But with pads comes another problem. Diaper rash! They really aren't meant to be worn 24/7. Now this condition in an adult is painful and embarrassing! I'm sorry, but no one else is going to put diaper rash medicine between my legs, but me. Picture this... a woman with a brace on one leg and one useable arm, bending down to look between her legs and applying Balmx between her legs. Since my recent stroke, I some renewed balance issues. Oft times my head is thumping the wall across from the toilet. Not hard mind you, a sort of a semi controlled lean forward, but just enough to stop my forward mometum. Luckily for me in this older home, the bathrooms are only 5x7. If it were any bigger, I'd more concerned. But for now, this works for me.
First there was the ipad and now every maker has got their version of this handy tool. For a stroke survivor , it sure beats a laptop. In weight and size alone makes them transportable. But the bells and whistles makes them extra special.
We tend to be technophiles in this house. If there is a new techno gadget out there, we'll have to try it out. More on my husband's part than on mine. I prefer to wait until they get most of the bugs out before I buy although I will go to my nearest store and play with it.
I felt the same way about my Kindle before I bought one. I waited for the Gen 3 with a keyboard before I purchased one. Even though I bought it for my husband's almost exclusive use two years ago, I now use it more than he does especially since my stroke. I'm an old foggy when it came to reading. I love paper books. But with my stroke and being one handed pretty much took the joy of reading paper books away with the juggling act I had to perform turning pages. It is light weight so I can carry it in my tote bag. It turns itself off and opens back up to the page where I stopped reading. The joy of reading is back.
A couple of years ago, my hubby approached me about buying an ipad. While I could see a benefit for him who scans websites, play games, and watches videos, there wasn't the same attraction for me to give up my desktop or laptop. Surfing the web with one of these was fine but I actually depend on my computer to do more interactive processing like novel writing, spreadsheets for keeping track of sales, and database functions for contacts. It had to do work so I asked him to wait. If there is one thing I know about technology, it is always changing and it has a built in obsolescence (of maybe six months) before a newer model comes out. I don't know about you, but I can't afford to upgrade every six months.
I wasn't proved wrong. For Christmas this year, we decided to buy a Surface 2. We usually buy a combined big gift that both of us can enjoy and a few other little things. All the rest of our budget goes towards our huge combined Christmas gift giving list. With all that is currently going on in our home, Christmas is coming early this year. It is on layaway as we speak. It's due to be paid for before the end of the month while my hubby can still enjoy it.
But for me, the ease of the smaller keyboard or no keyboard is appealing. I fact that it is light weigt a can sit on my lap is another selling point. My laptop puts off too much heat to sit on my lap for very long without burning my legs especially in shorts. The simple fact that I can work on my book anywhere is also a selling point because the Surface comes with MS Office already installed. The USB port makes transferring files between computers a breeze. I can also use my printer unlike others on the market. Of course now that I think about it my printer is wifi. Okay scratch that selling point.
The touch screen is an added bonus. With a flick of of a finger or two I can enlarge, these eyes aren't getting any younger, searching without clicking a mouse is cool. The prices and aps have come a long way since when they first came out. The prices have dropped drastically. A few months ago I bought my daughter an Android Jellybean for under $75 with a keyboard and cover. Now price has becomes is a very big issue.
Very soon I'll be joining all of you with the nifty handheld devices. Adaptation is key to enjoying life post stroke.
I am sitting here this morning wondering what I was going to tell you about the indie life. I'm having a BRAIN FART moment. My MIND IS EMPTY, but full of thoughts at the same time. None of these thoughts have nothing to do with writing. This is the gist of this blog. What happens when a writer can't write because their real life interferes with their work? And believe you me writing is hard work even if you self publish.
What do you do when the writing muses escapes you? When the desire to write is high but the inspiration or fire to put words on paper just isn't happening? I'm there and have been there for almost forever. This from a woman who penned six books inside of eighteen months and spent almost eighteen months post stroke trying to write one book.
The realization hit me the other day when I was to the point where I wanted to scream out of frustration of wanting to write...no check that, needing to write and not being able to. Right now, I need the escape factor that writing brings to my troubled mind. That's what writing is to me, a chance to escape my everyday life. While writing I can breakout of reality and dabble in different locales, be someone else, and have a scathing comeback right on the tip of my tongue to be directed at the person that deserves it. I can get lost in research and search for over used words. But I'm needed in reality and don't have the luxury of this escape.
So what did I realize? Sometimes, you just have to let some things slide to the back burner of life. When my mind and body have to be alert and present in the now, my writing just has to wait. Not that I have to like it, but it is what it is.
My daughter recently opened a photography business. When she had to pick a name for her company, she hesitated, and then she came up with the perfect name...Time is Precious Photography. Why is it perfect you might ask... a baby (wedding, friends and loved ones) is a baby a very short time. You can't go back and redo it. The only things you might have are pictures that jogs your memory in the future. Pictures document a life the way a diary can. Isn't that what reading and writing does? It captures moments and highlights in your character's life.
When we indie publish, we are saying we are breaking the mold. We are inventing a better mousetrap. We are blazing our own trails. We are controlling our own destinies as authors. Yep, all of that and more. When we don't write because real life interrupts us there has to be a pretty important reason for it. For me, it was having another tiny stroke, spending time with my grandchildren (they are growing so fast), and having a husband moved to hospice care for his final month or two. In my particular case...being in the time is precious mode is more important that committing words in my WIP. I make no excuses. It's a choice. So while real life takes up all of my should be writing time... I'm making every moment count.
I've been caught up in my own little world of late that I almost missed this.
You may have noticed the donation/blog hop logo on this blog for a young man named Andrew McNaughton. You may even remember that I am a contributing author in Nick Wilford's anthology, "Overcoming Adversity." You may also remember an interview I posted with Nick hen the book was published
It is with a very sad heart that I report that young Andrew passed away this weekend.
My heart goes out to Nick and his family. To lose a son even if he is a stepson is hard. Being a stepson is no barrier to the heart to grief. To Nick, Andrew was his son too in all senses of the word.
Having walked in those shoes before, I know from personal experience how hard it is. Andrew, may you walk, run, and do all the things in heaven that you couldn't do on earth. To Nick, his wife, and his sisters- may God send his Holy Spirit to wrap you with the comforting blanket of His love in the trying days and years to come. May He bring remembrances of the joys this son gave you and fill your heart with laughter. May He bring your heart peace.
Thank y'all for the concern expressed for me to take care of myself during this waiting game with the Grim Reaper. This is in response to all the comments and emails I've received.
I still sleep fitfully part due to my hubby and the other part due to physical pain. Last night I fell into a deep sleep at 10PM and didn't wake until 7AM. I didn't move a muscle (as in change position) all night long. This became a huge problem when I tried to get up...namely a painful back. I moaned and groaned into a seated position. Rice Krispies sounding with each increment of movement. As much as my desire to check on my hubby was, I couldn't get my body to move. Each step sent reverberating painful shock waves up my spine. Yes, it is a thrill a minute getting older.
But I am taking care of myself too. Rarely a day goes by when someone isn't in the house with us to lighten the load. I usually spend that time napping. I'm still fighting the fatigue accompanying my stroke. The spasticity has worsened in spite of the Botox due to the added stress. Meditation and deep breathing helps bring things into perspective. I have a cardiology appointment next week for my FUBARed heart. The ventricular fib has worsened to the point where I'm having to take medicine every day again. It's just another way of proving me as Abby Normal. Stroke patients have issues with atrial fib before a stroke not ventricular fib. It was a nice vacation from my heart condition while it lasted.
The neighborhood has started burning all the Fall leaves setting my allergies on high alert again. Why can't everyone just compost their yard trash like I do instead of paying hundreds of dollars in the Spring to fertilize their plants? It makes too much sense maybe. Calm, Jo, calm.
I've started my Fall/Winter garden in my raised beds. I've planted garlic, lettuces, mustard and turnip greens, and some sweet and white potatoes. Since we don't get a hard freeze usually until January, I think I'm safe. But just in case I've bought some PVC pipe and plastic. I'm getting a late start this year because it has been so warm up until October. We are still in the 70s and 80s here with night time temps hovering in the high 50s. Anyhow it gets me out of the house and in nature mode but still within ear shot when everyone else's fires and smoke allows.
As far as my therapy goes, I've basically quit for now. Movement causes pain although I'm still working my hand. I'm beginning to think my leg is a lost cause without surgery. The ulcer has healed once again. Wohoo! But I'm still being cautious about the time I'm actually on my feet. I don't want to go through another six months of that stuff.
I just saw my neurologist about me back sliding in some of the areas I had previously recovered but then lost. Yep, I had another tiny stroke. Part of me knew I had. So writing will have to wait until I recover some words and I regain my balance once again. But the good news is I'm recovering those skills fast than before on my own without going through additional PT sessions. I just have to rebuild my mind some more. Too many red and green squiggles are getting frustrating even with this blog. More game playing and such. Lord knows, I get enough practice with speaking with everyone in and out of my house, and the phone.
My hubby had another bout of severe chest pains today. At first (a few seconds) I freaked
out thinking this was it, and then I calmed myself down. I grabbed his
nitroglycerin and the rest of the items in my jump bag. I took his
vitals and called his hospice nurse. What a relief it's not on me anymore. The pain subsided and he fell
asleep again. I chanted a centering meditation ditty and breathed.
Checked his vitals one more time and walked outside. The neighborhood is
blanketed in low hanging smoke.
I've been busy with my husband's family trickling in at my request. He's got a rather large and extended family also. My hubby still feels the need to entertain them. He has so much he wants to say to them but lacks the energy or breath to do so. He asked me why he was sleeping so much because his medicines have not changed drastically, but he has trouble staying awake. I simply told him that it is taking all of his energy to breathe that there's nothing left for anything else. You can't run a car on an empty gas tank.
I know my readers of this blog are standing in the wings as a support
group for me. All the prayers, hugs, and concerns are gratefully
accepted. But know that I'm alright. Also know that I appreciate each and every one of you. Hugs back at you.
For most of you that do not read my blog regularly, you may not know that my husband was transferred to hospice care two weeks ago. This has been a long time coming. He's been terminal with a bad heart, bad lungs, and cancer for ten years. It is now time to say "See you later" but never "goodbye."
With hospice nurses, aides, social workers, and clergy in and out of my house three or four days a week, it's been a nonstop care-a-thon for my husband. So for those hours I'm basically free on other non essential essential tasks like cooking or cleaning. No more revolving door trips to the doctors and wasting hours. No more have-to-get-it-now trips to the pharmacy or pharmacies for his medicine. It all is delivered to my front door. Trips to the oxygen supplier are out too. They are now a phone call away. How many times have I prayed for this over the past six months? How many times did I wish this carnival ride I was on to stop?
Was it only August and September I did a series on grief counseling? It seems like a lifetime ago. How apropos in hindsight. Now, it is knocking on my door once again and I don't want to let it in. Honestly, who really does?
So what does all this have to do with stroke recovery?
During my initial recovery phase, I based my needs with him as a priority. Walking, forming words properly with my lips, drawing a syringe of pain medicine one handed etc. Now almost 18 months later, I'm wondering what I can base my recovery towards with my husband not in the picture anymore. What will be my focus point for my goals?
Myself? I hardly feel worthy of the dedication needed for the prolonged process of recovery. Not that I feel bad about myself, but doing things for others has always been my driving force. An external motivator to push me harder to reach it. If it's only for myself, it would be put on a back burner.
So now I'm stumped and am looking for another motivator. Doing it for me just doesn't cut it. Yes, I'm still determined to recover but I need that extra push to achieve. I've already proven that I can be a fun and creative grandmother as I am. I have proven that I can minister to those in need even if it's not from the pulpit. I have proven that although difficult, I can write again. I have proven that I can still be the counseling voice to guide my children. And life will still go on without any help from me, so I'm lost. I've accomplished so much in my recovery so far since my stroke. I don't want to stop recovering, but I know me. It would be so easy to give in to the dogma of plateau and it's the best it's gonna be.
It's not really an identity crisis, but then again it is. I know who I am and know my limitations. Doesn't everyone have limitations in one form or another? I know this and accept it. I need to be slaying dragons, but am lost on what weapon to use. I'm at my best climbing mountains and slaying dragons.
A new research study out of Canada is using video games for stroke rehab. I thought "Wow, that will be a challenge!" My second thought was, "How could I do it one handed?" My third thought was, "Doh! You old timer you."
The reasons my thought processes worked like this is I've long been a supporter of making rehab fun no matter what your age is. If something is fun then you are more apt to do it. In fact I've mentioned the computer/internet games that I "play" to rebuild my cognitive deficits. Those are easy with a click of the mouse, but video games?
wikipedia
I've played video games since way back when. I even had one of the first Atari systems ever built. Yeah I'm a geek and proud of it. I was a computer programmer back then. Matter of fact, I still have it in my attic. It came with Space Invaders. I even bought a few more games for it before I switched over to a Nintendo. But I digress.
I've always like the way it built eye-hand coordination and logic skills. Before my stroke I even bought a X-Box 360 hoping to get my husband to play as a way to keep his mental acuity strong. I believe if you don't use it - you lose it. Video games would be a great way to rebuild cognitive deficits like logic, progression, and sequencing. Plus it didn't hurt to have it for my grandchildren either.
wikipedia
But how would I play one handed? I've often thought since my stroke that it would be great to play with my grandchildren BUT I only had one working hand and it takes two. That pretty well left me out of the loop. I became the spectator cheering on others while they played.
Just like texting is faster with two thumbs, the control is not handicap friendly.
My third thought was when I realized that with a WII or X-Box Kinect it was possible to play the game without two functioning hands. That was was my Doh! moment. By moving my body for the body on the screen, it becomes a PT workout AND a cognitive work out at the same time. Unfortunately, I don't have the Kinect. I bought my X-Box when it was the "new" system out there. As with a technology based product, it has a life of six months before a new, better model comes out. Built in obsolescence.
I can see the movement, the eye- body coordination, balance training, stretching, and the fun factor helping us help ourselves. The more we attempt to move the more neuron pathways we build thus recovery. It's a win/win situation to me.
I PROPOSE MORE FUN IN STROKE SURVIVORS' LIVES! Lord knows, we've been through and still going through a lot. I've got an idea!
As it would happen there was junk matted in her hair. It becomes a whole huge production with one hand. Luckily for me she's a good bunny. I gathered the bowl of warm water and an ample supply of paper towels and q-tips. I placed her on her back on my now non-functioning arm with her head tucked between my arm and my side. Meanwhile I'm talking to her calmly and rubbing her belly. She likes that.
