Sunday, January 11, 2015

Sunday Stroke Survival~ Skiing! Yep, That's Me.

I've made more confessions on this blog of late than a Catholic makes in church...well, maybe not a good Catholic. Here's another one. I haven't been snow or water skiing in decades. Woah! That feels better to have gotten that off my chest.

To be honest, I wasn't exactly good at either one. Remember I'm a nerd. I prefer books and the search of knowledgeable enrichment over physical. It's not even that I'm anti-jock because I was one of those too at one time in swimming, field hockey, soccer, and even golf. Skiing requires balancing on one or two sticks of wood. You skimmed surfaces, supposedly, but I always sank. The same was true with skating both roller and ice. I'd always end up on my butt taking many helpless victims with me. I learned young that you have to pick your battles if you ever dream of winning. That's not to mean I didn't do it, I did. But I didn't excel at it.

I prefer to ski through life---Screech!
You: Wait a minute! I've read your blog for a while now. It doesn't sound like you're skiing through anything, but hitting every wake or tree as you do it.
Me: Well I do prefer skiing through life. A girl can dream, can't she?
Credit
Well I can, can't I? I can glide gracefully through this life only scratching the surface of water or snow. Skiing isn't without some hazards. I've hit a few trees along the way. Er, um, maybe more than a few, but I got back up.

That's the whole point isn't it? That I got back up and kept trying? Well, so I didn't choose to perfect my water and snow skiing abilities. I had other areas which I did. I couldn't be perfect at everything. Living is about choices and living with the choices you make. Yes, I had a fun summer and a winter vacation trying to ski without falling,  but it was a take it or leave it situation and a tiny piece of my life.

Credit
My stroke recovery is a whole 'nother situation. My stroke devastated my life and tore so many holes through my professions that it will take time to heal and mend. Even with the small strokes I had. It's a good thing I know how to sew and darn holes because there are a hundred little holes or gaps that my strokes took from me. Even if I didn't know how to sew or darn, I think I would learn how real quick. It's not like you can easily replace your body like you can a pair of holey socks.

I want my old body back with all its previously impaired functions. I was comfortable, for the most part, in it. I had four functioning limbs that weren't spastic. I could pull words in an instant from thin air when appropriate. I had control over my emotions and a hundred other things now gone. Yes, I've recovered quite a bit over the last two and a half years, but I want more! I want to reach the 25%, 50%, or even 100% recovery and am willing to work hard for it. Sound familiar? Really? Are you in the same place too?

Bell Mountain, CO
Yes, I can dream of skiing through the rest of my life. It would be beautiful.That's my goal. I've seen how the other 1/3 live and want to move on. But the truth is, I'm still stuck here on this mountain side looking down on a forest of trees between me and thee finish line at the bottom of the mountain. Skiing down this mountain will be treacherous and fraught with frustrations along the way. Trees will try to block my path. I will either skirt them or hit them. If I kiss a tree full face, I'll pick myself up and continue on.

I know the goal is reachable because...
Nothing is impossible with determination.

Thursday, January 8, 2015

Thursday's Tumbles and Stumbles~ The Spoons of Energy

This blog is to show you not everything is hunky-Dorie in the land of the Murphey Saga. We face real issues just like most of y'all. We are human, not superhuman. We tumble and stumble through our lives. It is not a pity plea so please do not take it as such. It's just an illustration. Most of the emails I receive have basically been, OMG!, How do you do it?, and I have such admiration... Be aware that I don't write this for admiration. It's more or less write to show you you are not alone in this life.

I need a shower something awful. It's been weeks of birdy baths( quickie sponge baths). I
Notice these are teaspoons not tablespoon
have to look at what I have to do each and every morning. This chronic fatigue I've had since my first stroke has been a killer. And then, I look at how much energy each task is going to take. It's always a juggling match of what has to be done and what should be done. A shower is something I cheat and pass on because it totally wipes out three energy spoons between getting undressed, taking a shower, and getting dressed. Three spoons of energy is important when looking at at the most thirteen spoons worth of energy per day. Pictured are 12 spoons, but I gain an extra spoon with a two-hour nap.

Let's do the math everyone...
  • I know the care of my husband during the day will take four spoons. 
  • Fixing and eating meals can run two to three spoons a day depending on how much I have to prepare before cooking. 
  • Care of my animals (cats, dogs, Guinea pig, and rabbits) will take another spoon if it's not a grooming or cage clean out day. If it's a grooming day or clean out day = 2 spoons.
  • Hospice visits. Sometimes three a day one spoon.
I'm already up to EIGHT spoons out of twelve gone and I really haven't done anything yet and I took the minimum of each. I've got four to five left for the rest of the day.

Now add in or subtract...
  • Therapy days-twice a week= Occupational therapy 1 spoon for each session.
  • Grocery shopping= 2 spoons because I have to make a list, shop, and then bring the groceries in and put them away. It's really closer to three.
  • Any other shopping like yarn, clothes, appliances, etc =an easy 2-3. Stores are huge!
  • Each doctor appointments = a good one spoon if not two. Botox is definitely a 2 and my heart doctor is closer to 1 1/2 because of lab work I have to get before my appointment.
  • Dropping off and picking up laundry= 1 spoon that's even with putting the folded clothes away. Now, if I did my own laundry= 3 spoons.
  • Picking up take-out from a restaurant, even Mickey D's =1 spoon.
  • Sweeping, vacuuming, dishes, dusting...you know, housework = an easy 2+ because the size of my house. I'd like to hire a housekeeper, but can't afford one.
  • My every Wednesday Night Knitting group = 1 spoon.
  • My once a month Stroke group = 1 spoon.
  • Knitting or spinning wool= 1 spoon.
  • Spending quality time with one grandchild = 1 spoon. I have eight.
Now, you see the actual juggling part. But there's a hitch in the twelve spoons of energy theory. Getting twelve spoons of energy is based on a good night's sleep (8-12 hours). I'm waking every two-four hours to administer morphine to my DH (darling hubby). If I do that twice a night that takes away one spoon easy before I even start my day.

No wonder I'm so exhausted all of the time! That's even without a bath.Yes, my kids were nice enough to install a walk-in tub the second Father's Day after my stroke, but I rarely have the time to really soak in it. The best I can do is stare longingly at it when I take a minute to go pee, or change my own diaper, or washing out urinals most times.

The last time I had a shower? Er, um, let me think...two weeks ago when my #1 daughter came for a visit. That sounds horrible doesn't it? But it's my cheat to make my short supply of energy last. I often said watching my growing kids or grandchildren, "I wish I could bottle their energy."

Wouldn't that truly be a blessing.

What has been your tumble or stumble during the week?


Tuesday, January 6, 2015

Redefining Disability Project~ Post #12

Okay by now, you've clicked on this posting because you want to read about my take on this project.
http://rosebfischer.com/2014/07/01/redefining-disability-an-interactive-blogging-project/  
Today is question #11. It's a Free Post Day where I can talk about anything I want to. You know me...I always have something to say. (grinning big)

Something that I'm waiting on is the decision if the new dry needling procedure for spasticity will be covered under insurance. I'm waiting on pins and needle quite literally.

Dry Needling is where they poke trigger points with a needle repeatedly to deaden the response of nerves causing adverse reaction, namely spasticity for me. My left, affected arm becomes so spastic that it will draw tight up into my chest with the wrist cocked at greater than 90 degrees and the hand clenched into a fist hard enough for my fingernails to draw blood from my palm. It will not move without severe pain and extreme force. This causes pain and cramping throughout the arm, but especially in the shoulder which is not paralyzed.

Yes, there is a lot of controversy about the procedures. Like any treatment- it will work, not work, or exacerbate the condition. Wohoo! I remembered a six million dollar word, (exacerbate) but spelled it wrong- thank you dictionary. Who should do it? What are the parameters/protocols? Is it too new/experimental for insurance to cover? I'm still awaiting the decision and two therapists who are to be certified mid-January.

Since my bad experience with the last Botox series, I've been looking for an alternative to the toxin I voluntarily allow to be put into me (Botox). I came too close to kidney failure. It actually scared me. I don't need another medical condition added to my long laundry list of ailments. I've spent a month and a half changing medication around to not stress my kidneys so they can heal.

So my plan is this if the dry needling is possible (if insurance doesn't cover it, I can't afford it) is to do both Botox and dry needling together with neurologist's approval. No studies have been done on this. I just know how bad my spasticity is without Botox and rather not be there. The idea is that it may take several sessions of dry needling before it reaches it full effectiveness. I personally, don't want to be in pain longer than I have to. The Botox can take one or two weeks before reaching full effectiveness.

my arm in spastic mode
If you haven't read my previous posts on my spasticity, it's an equivalent to having my arm locked in place, and having a Charlie Horse lasting two hours with an hour break before starting into the cramping again. Any attempted movement even gravity will set it off again. Try getting up from a chair without gravity playing on your shoulder. Now, I have a pretty high tolerance for pain, but a week or more with this kind of pain around the clock, for weeks or months, will wear on anybody even a masochist.

So the prospect of another treatment for my post-stroke spasticity is a godsend. So I'm seriously waiting on a bunch of needles. My next series of Botox and the dry needling. Good thing I'm not afraid of needles. I'll try almost anything to stop this spasticity. Did I fail to mention my leg also is spastic? It's two for the price of one. What a bargain-- NOT. I wouldn't wish this on my worst enemy.

I'll keep you posted.


Sunday, January 4, 2015

Sunday Stroke Survival~ Search Engines

But how can I find it?
Your brain is the vault of all knowledge. Everything you've experienced, seen, done, read, smelled, and touched is in there somewhere. Similar to computers, the brain has both Random Access Memory and long term data storage. So what can be done when the brain is damaged by a stroke or other mechanism of injury to the brain? How do you recall or search for data that you know is in there?

For the computer, there are all sorts of search engines from the low end like Google to the high end like Knowledge Vault or Knowledge Graph. Each has similar features but the high end is what you want for the ultimate data searches. All you need to do is plug into the internet.

Would it be so easy for the brain to do the same thing. Unfortunately, there is no such thing. People use many different things to jog their memory. In therapy, it's repetition to maybe wake up pathways in the brain to circumnavigate the damaged areas. Forgetful people leave Post-It notes for themselves or tie a string to their finger. That's all well and good, if it works for you, but that's the problem. What if it doesn't? What do you do then?

My youngest daughter is a TBI (traumatic brain injury) survivor. Similar to me with my stroke, we have no short term memory but have to store all things that we want to remember in long term storage. We also are aphasic which means we have issues with recalling data. Things like words get lost in the shuffle. We can substitute words (although they are not always right) and describe what word we are looking for in detail and let someone else tell us the word (guess, like the game 20 questions), or recall it later and often much later. You can imagine how frustrating this can be.

Unlike me, my daughter has found her search engine for recalling data. For her, it is verbal cues. I haven't yet. I'm still struggling at it, but then she has had twenty plus years to figure it out. Injury at 4 years old now she's 29- a quarter of a century ahead of me in dealing with the deficit. Me, I'm still an infant by comparison. My strokes were in 2012 and 2013. Which is why I compare myself to my grandchildren.

For me, it is multiple things which help me recall or search for data.
  • Create new habits
  • Post-It or note pads
  • Repetition
  • Verbal or visual cues
I'll do them individually or in combination to help me search. For example, finding my car
keys. Before my stroke I could place them anywhere and find them in an instant. Now, not so much. To complicate matters further, I have a multitude of house type keys on my keyring also (keys to-my father's house, church building, my #2 daughter's house, my front door and back door, and the out buildings on my property) as well as my car key. I could tell what went to where at a glance and now I draw a blank. I'm actually lost without them.

Visual cues
The first task was to color code them and split them up. Yes, it meant having keys made. My car key is pretty well a no brainer since I now only have one car. At one time I had three. It looks like the one above. Very recognizable. My front door key has a nifty red, white and blue graphic and it goes on the car key ring. My backdoor key is now green for my garden. My  #2 daughter likes Betty Boop, and my father was a Marine (visual cues). The key to the church is purple because He is the King. The other keys have other visual cues on them like flip flops for the pool house, an 8-ball for the playhouse (we have a pool table), and a sunflower for the gardening house. The keys for the out buildings now reside on a separate keyring. These visual cues have become my search engine to find the data I'm looking for.

I repeatedly put these keys in the same spot every time  I used them (repetition and creating a habit). This in turn stored the data into my long term memory. My keys are always put in the second little pocket of my purse. I pull them out of there to use them and put them back in there when I finish using them. This way I always know where they are. Now if someone else borrows them, like my grandson ;) and puts them where I'm not familiar with, he might get a phone call from his grandmother asking him what he did with her keys.

I've made a habit of leaving a 5x7 note pad by my computer for little notes to myself. These things are usually not important enough to store in long term memory, but essential for what I'm doing right now or within a couple of hours.

For things around the house, I use  Post-It notes. When I first came home from the hospital, three of my daughters and myself went through and reorganized my kitchen for easier access. Everything that was nonessential was placed in the bottom cabinets. When you can't squat down and get back up easily, it made sense. The same thing was done to the upper cabinets. Everything nonessential went on the upper shelf.

Now, switching around things in your kitchen that has been in place for decades is not a
task for the faint of heart. Remembering where you put all these things can be mind boggling and with the stroke my mind was boggled enough. Post-It notes were the answer. Eventually I would get used to where everything was and could remove them, but until I did, it just made sense. I will still call my daughters if I can't find something that is nonessential, like my springform pans for the cheesecakes I made for Christmas. I didn't think to look for them in the oven drawer and that's where they were.

Everyone has a different reminder system to jog their brain. This has been my search engine to my brain since my strokes. It works for me but it might not work for you. It's an individual process. My memory has improved greatly over the past year. You'll know I'm in trouble when you see smoke coming out of my ears from overworked gears turning or it could be just a brain fart.

So what's your search engine in your brain?

Nothing is impossible with determination.

Thursday, January 1, 2015

Thursday's Tumbles and Stumbles

Happy New Year everyone and welcome to 2015. I'll only have to type it six zillion times to think of this as second nature.

Something a bit different for Thursday's Tumbles and Stumbles. As usual event, I mentally do a recap of the previous year: accomplishments, blessings, open my GITG (Give It To God) box, and review what worked well and not so well.


Have you ever noticed the older you get the faster time passes? It seems like yesterday it was 2014. Doh! It was. No, I mean New Year's Day 2014. So much has happened, didn't happen, and remained the same that the days whizzed by.

To recap...
  1. I'm thankful that God carried me through the challenges and trials of the past year. Even if he did have to remind me that I'd be easier to carry if I'd stop wiggling. My faith has carried me through another year.
  2. My dear, sweet hubby has defied all odds and still wakes up with a smile on his face when he sees me. He has now been on hospice services for 15 months. The greatest blessing of all.
  3. I'm still able to give hope for recovery a chance despite all the naysayers.
  4. Every day met a new challenge and figured out a way around it. Thinking outside the box as usual.
  5. I'm still here so my job here on Earth is not finished yet. And yes, I'm still too stubborn to give up, although the thought has fluttered across my mind.
  6. Last year, I saw the implementation of an action I started with my local stroke support group...a peer visitation system at our local hospital for stroke survivors and their caregivers. You might remember I was on pastoral staff at the hospital prior to my strokes. While I've physically been MIA from the group this year, I'm still a phone call or email away.
  7. Physically, I've had enough downs to discourage Job, but I continue on. Despite the amount of pain I'm in, or disability... it still has to be done.
  8. I've adapted my life to include some of the things I previously loved to do like learning two new ways of knitting, and how to spin my Angora wool into yarn. So far, I have spun 10 yards! It doesn't sound like much until you consider I'm spinning an inch at a time.
  9. I knitted a total of 16 shawls and 27 sets of caps and scarves for Christmas presents for friends and family. A major feat even for an accomplished knitter. 
  10. Emotionally, I've been on a roller coaster but still strive for control of my PBA without another "new" drug added my huge laundry list of prescriptions.
  11. I'm more capable than I would have believed possible at the beginning of 2013.
  12. In spite of my trepidations of having a still-wet-behind-the-ears OT. She has turned out to be a champion for my cause-recovery.
  
What's ahead for 2015 (none set in stone)...

  1. There's a new granddaughter due in June. I'm thinking of layettes sets and blankets galore, but who knows what I'll knit. I did join a loom-along with a new square afghan pattern each month for 2015 so maybe an afghan to cozy up under.
  2. More therapy to strengthen muscles weakened by my strokes. Hopefully with the aid of dry needling. If not, then continuation of my OT stretches and Botox.
  3. Enjoy each and every day that God gives me and not take it for granted.
  4. Continue to push the envelope. Try old things in new ways. Even if I recover what I lost with my strokes, no knowledge is ever wasted.
  5. I've still got those few (HAHA!) extra pounds to lose, but if my mental sanity needs a piece of decadent chocolate cake- I'll have it. 
  6. I'm going to try and write some more stories for Don't Get Your Panties  in a Wad. I've done a few writers exercises in the Books and Authors Forum and blogs to feel almost comfortable with writing again.
  7. Buy my breeding trio of Angoras. I've got a double closet cleaned out and ready to build the cages. Especially since I can spin again. (Huge grin)
  8. Keep working on having patience. It's a tough lesson to learn, but I'm getting there s-l-o-w-l-y.
  9. I'm going to spend 2015 loving, laughing, and living because I ain't dead yet.
This sounds like a plan for success to me. Nothing over strenuous like winning the lottery (I'd have to play first), nor I'm going to lose 50 lbs, nor I'm going to complete DGYPIAW. No mostly I'm going to play it by ear. Nothing spells T-R-O-U-B-L-E like a well laid plan. Ask me about Murphy's Law. I'm a Murphey and I write about it here. Stay tuned.

So what's in store for y'all?