Sunday, July 20, 2014

Sunday Stroke Survival~ What Goes Up...

When I was in inpatient rehab, I made the statement..."It's not if I fall but when I fall." Well, I did it again Wednesday.

Let me backtrack to Tuesday's OT. I awoke later than usual so I decided to double up on my Baclofen before therapy. The tightness in my bicep and pectoral muscles gave me an inkling that therapy may have to stop after this week. Higher tone is the precursor for me that the Botox is wearing off with the spasticity to follow quickly after. Therapy confirmed it even after ice and heat were used but the fingers still stretched.

I got home to find the sitter gone and daughter #2 and her youngest son at the house. Triston (15 next month) is my yard man. They'd been at the house long enough for him to mow the front and half the back before I came home via the tractor. Next came the mandatory Skype call to our #4 daughter in AZ. During that time daughter #1 comes in from Savannah with daughter #2's oldest son and her two boys (13 &7). A houseful! I set each of them on a task, mostly outside to keep them busy. As you can imagine, my hubby and I were both exhausted by the time all of them left.

Wednesday morning was bad from the start. I had slept hard so everything decided it wanted to play at Rice Krispies (snap, crackle & pop). With a groan and several attempts, I got out of bed. I waddled my way into the living to administer my husband's medicines and empty his urinal. Then it was, hop into the shower for a bath before therapy at 11. Needless to say, all the energy from a good, solid night's sleep was diminished by half by just these simple acts including getting dressed. Getting dressed was more of a chore than it usually was. I got my panties in a wad, fought with my compression knee-highs, and my shirt wanted to bunch up and make life difficult. But I fed the animals, watered them, and gave each of them undivided attention that they craved. So now I've used six of twelve spoons via the spoon theory of energy.

Before leaving and the sitter arriving, I checked in with my hubby to see if he needed anything. Coffee. Keep in mind that the pressure sore on my foot ruptured three days ago and walking is difficult, I waddled to the kitchen and made his coffee. Thanks to my #2 daughter buying him a Keurig one cup coffee maker for Christmas, this was a quick fix.

But then he mentioned the bottom sheet on his bed had worked loose. I managed the tug and pull the fitted bottom sheet back into place. I might mention at this point, his mattress is an air mattress with a hose that is attached to the electric compressor unit... another spoon or a spoon and half gone.(7-8 spoons expended with 4-5 left until nap time at 3pm) Knowing I had therapy (2-3 spoons, fix lunch, administer meds, and odd & end things before I got a nap another 2-3 spoons worth).

The sitter arrived and I headed out the door. Fifteen minutes to get to the rehab place. I stepped onto the ramp and surfed hanging ten halfway down the ramp. It had rained heavily the night before. I landed in a half split and on my rump. For once I was thanking God for my six ax handles across bottom...plenty of padding to land on.

I did a quick assessment. Everything moved without much pain so I rolled over and ungracefully got to my feet. I rushed at top speed, a glorified slow walk, to my car and drove to therapy...not even concerned what I looked like. I was going to be late and I hate to be late.

All seven traffic lights were green and no serious idiot drivers were met. All the handicapped spots were taken. I mean really! There are only twelve of them! I ended up parking in a regular spot about three hundred feet from the door. That doesn't sound like much but try doing it with an open pressure sore and opening your car door wide enough to get out of your car in a regular size parking space.

Anyhow, I wobble through the door and look at the clock over the check in, three minutes late. My OT escorted me back into the therapy room a moment later. I began telling her about my morning. She asked ice or heat? I answered both. Ice on the spastic muscles in my bicep, pectoral, and left wrist that was beginning to smart and swell. Heat to the shoulder, neck, lower back, and the tricep which were knotted up from the fall. She off offhandedly mentioned I might want to get an x-ray but bit her tongue at the look on my face.

Well my therapy session did not go well, but then there is always Friday. Come Friday we'll make an assessment on whether or not to do another week or stop until after my next Botox injections. While I was resting between stretches, she grabbed a towel with a bottle of alcohol and cleaned all the scraped areas that I didn't know I had. Believe me when I say I felt every single one after the alcohol. My wrists, right hand, and knees had too many to count sharp intakes of breath.

We both examined my left, only one working right now, wrist. No point tenderness, but swelling, pain upon moving the thumb and pinky fingers but not sharp enough for a break. Yeah, I know what that feels like. A humongous bruise turning shades of black and purple on the outside edge of the palm, but both of us didn't think anything was broken. So I wrapped it up in an Ace bandage and called it a day.

Trying to do anything with an Ace bandage on your only working hand is ridiculous! Everything else I'd planned to do went out the window. The exception was changing out my husband's M6 oxygen tank. It was so much fun changing out the regulator with three working fingers. I won't even bother to go into it here. I'll leave it to your imagination. But you gotta do what you gotta do. I did leave putting it back in its bag for my hubby to do. I did try but bent my thumb back farther than it wanted to go. Stifling a scream, I grabbed it all and carried it to his bed.

Thursday morning was a bear. All the abuse I put my body through the previous day told the tale. Accidents always feel worse the day after. I basically took it easy. The hospice aide was here and daughter #2 and our oldest granddaughter (14) were here to pick up my slack, but God knows I needed the help. Shuffling around like a little old ( much older than I am think 90+) lady was an improvement. I got on Facebook and my emails typing with three fingers. I didn't think that there was one part of my body that didn't ache.

I looked at a pair of fingerless gloves that's on my loom for my eldest granddaughter for her birthday and knew it would have to wait. What's to sense of having a do nothing day when you can't do something you want to do? It's one of those Grumbling, growling moments.

Friday was OT again. One more week of therapy and we'll be done until after the next series of Botox. (sigh) How was y'all's week?

Nothing is impossible with determination.

Sunday, July 13, 2014

Sunday Stroke Survival~ Back in the Saddle Again Finally!

Well, most of my Facebook friends know, but y'all don't know that I've started OT again on my arm. This was my first week back since September of last year. Why the delay? I couldn't arrange (read afford) a private sitter for my DH (darling hubby) for me to arrange for my therapy sessions...

 $15 an hour (1 1/2 hours with drive time)X 3 times a week X 4 weeks in a month = a HUGE expense on a very limited budget. Our insurance will pay for hospice but not for private sitters for my care issues. I just couldn't justify the extra expense nor did we have the money to spare for me to be in therapy. Although my insurance will pay 100% of the therapy bill, I've been borrowing from Peter to pay Paul for some months now and see no end in sight. No, I'm not whining.

When I spoke to an old friend of over twenty years, who is also a minister and volunteer with hospice, about my dilemma she flat told me it wouldn't do to hurt myself because of my husband's health issues. She arranged for a slew of volunteers to sit with my husband for free while I took therapy.

The only problem was my husband's paranoia about too many strangers in the house. This friend got volunteers who were off duty police officers and their spouses. Although most of the officers I worked with many years ago have retired, their children now work on the force. It becomes old home week playing catch up with all of them.

I started OT with a new therapist. My old therapist works strictly in pediatrics now. I was really leery about having to train a new therapist. My old therapist and I understood each other perfectly since both of us were willing to try anything to get results. I expressed my concerns with the director of rehab services when he stopped and talked to me. So in walks this new therapist. I do mean new because she only graduated last August. I begin clearing the air. I've never been shy to say what I want and what I expect. It's the only way to open a meaningful dialogue. AND, there has to be a meaningful dialogue for progress to occur.

She stepped out of the room for some heat packs for my shoulder, arm, and hand when the rehab director poked his head into the room. I could see the question in his eyes...'Well, what do you think?' I gave him a thumb up. The young lady was open and honest. It was a starting place.

The witch with a "B" about my stroke is paralysis with high tone and spasticity. While the Botox reduces the amount of spasticity in the bicep and pectoral muscles the tone is still in play. This is most obvious in my wrist and fingers.

We've only had one mild disagreement in the past two sessions about paralysis. In school she was taught that true paralysis dealt with only flaccid muscles and no voluntary motor response so because I exhibited high tone and spasticity I wasn't paralyzed. Well, she was wrong. To prove it I Googled the definition of paralysis on my Kindle in a medical dictionary. I left her with one sage piece of advice. Learn something new each day.

The second session I heard something I hadn't heard in over a year. I believed it. I'd worked towards it. But had not heard a medical professional say it. There is hope for almost full recovery of my arm. I had expressed if I could just get use of my elbow back that I would be happy. Then I got a cramp in my hand as she stretched my fingers out one by one. My fingers out stretched like a gnarled, old witch's hand during the cramp. Both of us stared at it in surprise. Our eyes met and "Did you see that!" came out of both of our mouths in unison. The hand curled back into a fist after it was over.

"We've got to work harder on this!" she said. "Heck with only your elbow. We're gonna get your hand back too!"

Now, I can't wait for my Tuesday therapy session. It won't happen overnight, but with time, I may just do that. It was just the hope renewal I needed.

Nothing is impossible with determination.

Sunday, July 6, 2014

Sunday Stroke Survival~ Striving for Perfection

Something has weighed heavily on my heart this week. It caused me to stop and rethink my attitude of where I am in my life. I honestly do this quite often as a reality check.

The gigantic WHY question.
No, not the why did the stroke happen to me? I know why. It was genetics and poor life choices I've made.

I still say the delay in my recovery in part is due to God teaching me patience. I still don't have that battle won, but I've come a long way in two years.

No, not the why haven't I recovered more of my body by now. I'm a victim of circumstance that overloaded my "golden" one to six months optimum recovery time with an injury.

These things I knew the answer to. My "why question" deals with something deeper.Which is why it made my heart heavy. Why do I want to recover what I've lost so bad?

Previous to my stroke I'd accomplished many things. In fact, I'd accomplished more than most people in my life both good and bad. So why couldn't I just be satisfied that this is the way my life should be now? Are we as human beings always so dissatisfied with our lives that we constantly have to strive to be better? Have more? Do more?  
I've got everything I need. Sure I have wants but my wants won't kill me. I can take care of my basic needs for me and others. That's saying a whole lot! I came to the realization that I needed to be content with my life. Admit, for probably the first time with acceptance, that there are just some things that won't happen today, or tomorrow, or even ever. Yeah sure I want a full recovery of everything I lost, but whether it happens or not, I have to live this life and it is a gift that I was given.

I was being my own worst enemy. I was playing a killer mind game on myself. So I decided to stop. I hate mind games. They only hurt me and those around me. The mind games I'm talking about are not the same as I did when I was writing. Those are benign what-if games, but I'm talking about the hurtful ones. Yes a certain amount are useful to achieve anything like walking that extra forty feet when you are exhausted, or tricking yourself into believing you might just succeed in some task.

Does this realization mean I won't be going to rehab next week? Nope, because I still have to try to regain what I can or at least slow down my spasticity from invading my body once the Botox wears off. Every little bit helps. Every little success is paramount. It is still worthy of patting myself on the back when I wash dishes or cook dinner. Sadly that is few and far between in part due to my energy levels and in part because it increases the difficulty in my husband's breathing efforts. Most nights it is still a TV dinner split between the two of us. 

This week I've had another bout with congestive heart failure which spurred my contemplation. (heavy heart, get it?)My cardiologist wanted me in the hospital for a few days, but my home life isn't conducive for that right now. So I stayed home off my feet, or as much as I could on 60 mg of Lasix. Extra potassium and low salt on top of a less than 1000mg of salt diet. I've been eating a lot of salad instead of TV dinners which are loaded with salt. 

At times like these, I really want a catheter instead of getting up to go to the toilet every ten minutes with a full bladder. I dropped ten pounds in just fluid the first 48 hours. The good news is that I'm coughing less and can breathe easier now. My heart has settled into its usual Abby Normal rhythm. After two days I went back down to my maintenance dose of Lasix. Whew! Thank God! I dumped a total amount of fifteen pounds of unnecessary fluids in four days and I'm back to my normal heavy weighted self again. So all in all, things are back to normal.

No, I still have a damaged heart. I'm still paralyzed. I'm not in congestive heart failure for right now. My husband is still dying in slow increments. He is still on hospice services. I'm still his primary caregiver. I'm still maintaining a household.

It's just is what it is. And for that, I am thankful. So I got my answer to this WHY too. I'm satisfied and not discontented with how my life should be.

Nothing is impossible with determination.

Monday, June 30, 2014

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, June 15, 2014

Sunday Stroke Survival ~ Aphasia, Wouldn't Dragon Speak Work?

I don't know how many times over the past two year that someone has asked me if Dragon Naturally Speaking or some other speak instead of typing software would help me write my books. I know I'd be rich at a dime for every time I answered no. I wish it would.

Yes, as far as not having to type everything with a keystroke onto the page, it would. Typing is a challenge one handed but doable. But my difficulties with writing are more complex.

I have aphasia. The inability to transfer thoughts into words or even carry thoughts for very long. Luckily I don't have a problem with comprehension for the most part. I can write a blog because there are previous words or sentences to keep me on track. In this I'm very lucky indeed. Many can't. I'm also fortunate that I can recognize that something is not right with what I'm about to say and tell the listener. I'll say that this isn't the correct word but it's all I can recall at the time. They can easily do a substitution for the right word or play twenty questions with me to get the right word.

My problem with comprehension comes into play when I read. For example, a story with multiple characters often finds me flipping backwards to recall who a character is or what they said. It really takes the enjoyment out of reading fiction. This is where my second stroke hit me the hardest. So mostly I read subject based nonfiction. Biographies are in the same boat as fiction for me.

Getting back to speak-typing programs. With voice recognition software they will have you repeat certain phrases to get a baseline of how you speak. How I speak words in the morning, afternoon and at night sound different depending on what has gone on during the day and my level of fatigue. First thing in the morning and late at night (the usual time I write), my speech is slurred more than if I've been awake and vocalizing for a couple of hours. My mouth will form the right letters but the sound is off than my usual voice. Which has almost totally changed since my stroke.

My voice has to wake up and be exercised before I'm clearly understandable. That's a blessing of being alone in the house with my lip-reading hubby. Sound doesn't matter. Unfortunately for me, this is the same time I'm most creative. Focusing on how I'm pronouncing my words is like patting your head and rubbing your tummy at the same time. I can't do it anymore. My multitasking and juggling skills rank right down there with the average male and I used to be a master at it. No offense meant, but it is a proven fact that women can multitask better than males.

At five AM and after nine PM, the simple phrase, "I'm having a good day" sounds like "I ma hasing a goo a." But between seven AM and eight PM it's clearly understandable. This does not include the first half an hour after a nap. So you can see the difficulties with voice recognition software. Also my speech is constantly improving. How I speak now is infinitely better than even six months ago. I would constantly be upgrading the voice recognition. In fact, I'd probably be spending more of my time upgrading than actually writing. I'm still getting jumbled between the English-English pronunciations and the American-English. I guess I've reverted to my previous English language lessons.

This point was brought home today with my sister in law's visit. I haven't seen her in a year.  She exclaimed today, "You are doing so much better than the last time I saw you."

My first thought was kind of nasty..."Well what did you expect after a year of getting better?" Of course I answered considerably more cordially and thanked her. You know that look that dogs get when they twist their head to one side when they hear something strange? Well I saw her do that more than once during her 45-minute visit so it must have been something I said or how I said it.Yep, aphasia can be a real witch with a "b" in normal conversations no matter how well you think you are doing.

Now that she's gone and I can breathe again, I look back at the improvements I have made and am thankful. There's something about trying to play catch-up after a year's absence that is totally draining. I need a nap. But after this long winded blog...No, I can see no sense in getting a voice recognition software program to assist me in writing my books. I have to fix my mind first. Now if I was thinking entire scenes and dialogues within a couple seconds like I used to...maybe, but for me right now, I'll pass.

Nothing is impossible with determination.