Sunday, January 31, 2016

Sunday Stroke Survival: Reading is Fundamental

Remember this?

Circa 1973

Okay. I apologize. Some of y'all are much younger than I am. RIF (Reading is Fundamental) is the largest nonprofit organization for literacy in the US and it was founded way back in 1966. Yes, I remember back that far too. Their goal was to put a book in every child's hand to encourage reading. It's a fabulous group. So what does this have to do with stroke survival? Well, I was getting to that.

One of the areas I was hit hardest by my strokes was in the ability to read written words and follow it through with comprehension. This may boggle your mind because I'm writing and editing this blog. The brain after a stroke or other insult injury is a curious thing. Yes, I used the word "insult" on purpose. According to my dictionary it means...

    1.   a disrespectful or scornfully abusive remark or action.
      2.   Medicine                                                                         
                       an event or occurrence that causes damage to a tissue or organ.
To me it also means an insult to my intelligence. I was a published author prior to my second stroke with hopes of being one again. So yes, I consider my strokes as an abusive action and a medical event also. So instead of calling my stroke a CVA (cardiovascular accident), I call my "events" CVI (cardiovascular insults). Make sense?

But I digress.  ((My poor, damaged brain. It's too young in recovery to be alone in the dark)) 

I've actual got it better than some folks living post stroke. I at least have my phonetic spelling. I can read a word list all day long. The problem is comprehension. I'm slow as a tortoise crossing the road. (I actually had to look up how to spell tortoise correctly) Comprehension comes when I read something written three times or sometimes more. That's an improvement over just a year ago when it was five or more times.

I have both receptive (comprehension) and anomic (word finding) aphasia in varying times and degrees. Even over three years after my strokes. I have to say that I work harder on recovering this skill than any other. Why? Because, it's actually easier for me to do than any other loss I have (physical). When I went from creating text at a rate of 50,000 words a week (pre-stroke) to  struggling to do 600 words (post stroke) is a hard blow for me. Typing (physical) one handed is secondary. 

My reading comprehension being what it is, is another hard blow. Since I was first old enough to read, reading was my best friend. It was communicating with the world around me. It was escapes into different lives (even just for a moment). It was educating my thirsty mind. It fed my soul to the point of me being a glutton.

Now, it affects every day of my life. Being the granddaughter of a librarian who instilled in me a love of reading, sure doesn't help. It also made people gifting me trouble too. Reading recipes to cook. There is a major difference between a teaspoon of salt and a tablespoon of salt. Even reading the newspaper, or letters (emails) is a major chore. I do it, but the joy of reading has simply died in me. This is cause for a major depression and grief to strangle me into asphyxia.  

Stranger to me is that my medical terminology is intact, but everything else I struggle with. Different part of the brain, I guess. Go figure. There is no rhyme or reason to understanding how the brain works. That's what makes stroke recovery so difficult to standardize. It's worse than an shallot with all the fine layers.

I  often say that, in regards to my stroke, I miss my mind the most, but let me fine tune that. I miss my reading comprehension But there's hope that I will recover what I lost, because...
Nothing is impossible.

Monday, January 18, 2016

Disabled, Yet Able. The Dangers of Living Alone.

I awoke at 2 AM Sunday morning and I'm gasping for breath. No, my cat isn't lying on my chest with her twenty pound bulk. It was a pretty frightening feeling. The fact that I'm alone in the middle of the night, and having what might be a serious problem slammed home with me. Being past medically trained, I started evaluating my symptoms and possible causes. A physician heal thyself type of things.

I grabbed a pulse/oxygen monitor out of the bed side table. That's a good thing about my beloved dying as he did six months ago. I have plenty of diagnostic equipment that I had bought over the years of his care. Both were fine. I took my blood pressure, again the numbers were picture perfect. "Okay, Jo. You're fine. Get up and make this trip to the bathroom and try to get some more sleep,"I said as much trying to convince myself and reassure myself at the same time.

I was huffing and puffing pretty hard by the time I got on my AFO and shoes to make the trip to the bathroom. I started with a dry, hacking cough with the exertion. Gaining the floor and making my way to the bathroom, I noticed I'd picked up a wheeze in my breathing and that I felt like as if someone was pushing on my left shoulder blade and rib cage. Grabbing my steroid inhaler out of the office as I made my way to the bathroom was only a matter of four extra steps. Was my allergies messing with my breathing? I did a double puff of my inhaler as the directions instructed while I emptied my bladder. I sat there waiting for the inhaler to loosen my bronchial tubes. That where the wheezing was coming from. It always did in the past.

I was hit by waves of profuse nausea and the room began a dangerous circular movement. I actually grabbed the vanity to steady myself. Something was definitely off. I grabbed the digital thermometer from the basket on the back of the commode. A hot flash from hell had engulfed me and I was sweating enough for it to puddle in the abundant creases and rolls in my aging body. No fever. In fact my temperature was a degree below normal for me.

I'm on the commode feeling like crap. Cool washcloth on the back of my neck, wastebasket standing by, my affected elbow balancing me with the back of the commode. I'm sitting there in my Wonder Woman nightgown which is now damp knowing there is something going on with me with no empirical proof that there is something physically wrong with me. Could it be a panic attack? It was six months to the day of my husband dying. No, I was actually okay with that. Well, honestly not okay, but you know what I mean. It didn't make sense to me. Boy, did I ever pick the wrong nightshirt to wear. It should have been a "Super Wimp"nightgown.

So where was my cell phone? On my nightstand, of course. I don't have pockets in my nightgown, Silly. I waited almost an hour waiting for whatever was going on to stop. It didn't. I'm still trying to run down a list of possible things it could be. As I passed the front door, I opened it. I knew outside was in the 30s, but I kept thinking that if the nausea would go away then everything else would stop too. Sitting on the wicker patio chair, I took in big gulps of cold, rainy air. Maybe some toxic gas was leaking in my house like carbon monoxide. It can cause those symptoms too. But I didn't even have my little space heater running.

Outside felt good. I wasn't cold. In fact I could feel heat pouring from the back of my neck with my cool hand. What in the devil was going on???? Were the symptoms vanishing? Easing up? Remaining the same? Getting worse? It wasn't worse, but it wasn't better either. The cold weather wasn't helping with everything, but I was no longer sweating. I thought about making the dozen steps to my cell phone and calling 9-1-1. This had been going on for three hours at this point. It wasn't a life threatening emergency. A funny thing about emergency personnel, me included, we don't call unless it's absolutely necessary. We know what are emergencies too. This wasn't one. Whatever THIS was, it wasn't killing least not quickly.

The sun had started its morning trek across this part of the globe. I decided to spare the neighbors the sight of a older woman in her pajamas sitting on her front porch. As I rose, gravity loosen a particular sphincter and my drawers were filled with warm morning muck. Great! As if I didn't feel bad enough!

I waddled into the bathroom for a clean up and a shower. It's a good thing that I have a sprayer head on my shower and a seat. With the vertigo, I never would have made it through a regular shower. The nice thing about my walk-in tub is that I'm surrounded on all sides. I can't fall anywhere. I opted to not fill the tub but let it drain freely just in case my bowels decided to unloose again. A smart decision on my part.

The steam from the shower increase my chest pressure and my coughing came in full fits now. I dried off, and donned a t-shirt and a pair of shorts. The idea of putting on anything more was just too much work.

I texted my daughter, two towns over, stating I didn't feel well. In case she was asleep, a text message wouldn't wake her. She answered me back within a half hour. By now my shortness of breath had worsened until my words were now back to when I first started recovering from aphasia. It took a while to explain what was going on. She decided to come over and take me to the ER.

While I waited the hour it took for her to drive to my house a thought struck me. I could be going into congestive heart failure again. No obvious symptomatic swelling of the hands or feet, but I'm Abby normal like that. By the time my feet or hands swell, I'm in serious trouble. I can hold upwards of 13 lbs of harmful fluids in my torso before my extremities swell. That's a whole lot of pressure on my already damaged heart. I hopped on the scale for a quick weight check. Only a five pound gain of fluids overnight. Not really unusual for me and nothing 40 mg of Lasix wouldn't fix in short order. So another logical, medical reason for my distress was shot down. Now, I'd officially ruled out any life threatening conditions.

My cough worsened to match my now upright sitting labored breath. With the coughing spells had more trips to the bathroom with me seated and hugging the waste bin. I kept telling myself if I'd just vomit, I'd feel better. My daughter arrive and she checked me out. She works for Hospice. I gave her the benefit of doubt in mama's training and experience which is five times greater. She was as stumped as I was. We loaded into my van and drove to the hospital.

The hospital wasn't taking any chances. I didn't even make it to the triage room before I was whisked to the acute care section and put on a cardiac monitor. I was relieved to see my "normal" semi-sinus rhythm appear on the screen. An IV was started, multiple tubes of blood drawn, and a chest x-ray was completed in short order. I did two rounds of breathing treatments with respiratory which didn't help a bit. Well, maybe a little bit. We sat an waited on the blood cultures.

Eventually, three hours after I arrived at their doors I was released. The doctor said all of my numbers were good. In fact, my test results were better than his. I have a viral infection of unknown composition. It can take up to three days to grow the bacterial cultures. I was released with a new inhaler to use in conjunction with my steroid one and a heavy duty Z Pack (Zithromax) prescription. I wasn't running a fever because my body wasn't fighting the infection yet. The Z Pack is just in case any bacteria grows in the cultures.

Am I satisfied with my care? I dunno. I didn't get an answer to what is exactly wrong with me. In the mean time, I still feel like crap. Immodium has done its job once again. I had my daughter open a full box of the little suckers and place them in a small pill bottle for me. The nausea comes and goes but I've got some Phenagren if it becomes too problematic. The pressure in my left side of my chest is still present. The doctor did say that it may be a case of walking pneumonia in the early stages. My coughing fits have lessened somewhat for the time being.

Right now, I'm feeling a bit like a stroke survivor feels when they start or continue to ask questions about their stroke. It is all up to you. I know that feeling all too well. Nobody has the answer and I'm playing stump the doctors.

I'm relieved and terrified by the fact that I'm alone in this house. If I'm ever without my cell phone, it could be disastrous or deadly. I'm going to be sewing pockets in ALL of my nightgowns just for my cell phone. This whole scenario could have been worse. It all goes back to what I was saying a couple of posts ago. Being independent/able and being disabled is not a good place to be. Living alone, with the nearest neighbor half an acre away, is not a position I want to be in anymore. Too many things could/can happen.

Sunday, January 17, 2016

Sunday Stroke Survival: An another Six Million Dollar Word and Stroke Recovery

Okay, this week I'm starting this week with a song.

No, I don't have this phobia, but it seems to fit today's topic for discussion.

Science is grand for coming up with humongous words to describe something simple. Today's term is neuroregeneration. It's a six million dollar word for regrowth of nerves.

A few years ago, I talked about this here on my blog having experienced it first hand after a back surgery deadened all feeling in both legs from the calf down. It took two years for the nerves to start regrowing enough to regain the sensation back in my feet. It came back in quarter size increments until there was only quarter sized increments of no feeling. I'm talking about full thickness loss of sensation. Example-I stepped on a nail and it inserted clear through my shoe and out the top of my shoe, and I didn't feel it. Now I feel everything when it comes to my calf down after twenty years.

In 2014, I said that it was the year of my stroke recovery that I would start to show gains again after the six month window of greatest recovery past. I was right and wrong. It was also the year that my spasticity raised its ugly head into full force too. I knew the nerves were regrowing because I could actually do more in living post stroke. I made some amazing gains in spite of the spasticity. Mainly, I relearned how to knit and was trying to spin wool into yarn. I was branching out and learning new ways to achieve what I wanted.

Today is the beginning of 2016 and I expect even more regrowth and more achievements because of my neurogeneration. With each passing week, I can reach farther with better control of my extremities. My leg still goes berserk when places like my knee are tapped  for reflex, but not near as great as it once did. I have greater dexterity in my motions like lifting my foot and placing it exactly where I want to place it. It makes walking more sure footed a breeze. But it doesn't mean I won't misstep and fall. I still do that but not on a daily basis now. More like weekly or monthly.

Neuroregeneration, continued therapy, dry needling, and Botox helps enhance these gains. My arm is coming along. It still has a way to go in pin point accuracy, but from what I understand, this is normal for the recovery process. The wrist and fingers are the last to respond. I'm still waiting and am hopeful. I'm already seeing gains with the reduction of spasticity. I can, on a low spasticity day, pinch my index finger to my thumb. That's a huge gain from a year ago when my hand was permanently clenched in a fist. It's amazing how the body will heal itself. The contratures in my wrist and middle two fingers stop actual straightening and full supenation and a full recovery. Surgery to resolve the contractures is useless until the spasticity is no longer present. So I have a long term goal of no more spasticity. It's never been done before but like I always end these posts, nothing is impossible.

I'd be dreaming if there was a way to resolve these problems with a pill, but who knows, science is always evolving. Maybe one day there will be. Take me and spasticity is history, or drink me and grow nerves back instantly. It was would be like Harry Potter fixing his broken arm with a spell or potion, but that's only fantasy today. Still studies are being made weekly on the possibilities so who knows.

I'm not really buying into instant gratification these days, but it would be nice, wouldn't it? Fantasy and Science fiction ring true with time. Not always the way we expect, but every day is forward progress. Maybe one day my great-great-great grandchildren will reminisce about how great-great-great grandma was paralyzed by a stroke but we don't have to suffer like she did now. How hard and long she took to recover from it. Thank goodness, it's not like that any more. We've got this pill that cures all the bad stuff that happens to the brain after a stroke. What do want to bet that scientists will come up with another six million dollar word to describe it's function too.

Nothing is impossible. 

Wednesday, January 13, 2016

Moving On

I've had a good, hard look at what I cannot do by myself and what I can. I've scrapped the idea of living on my own and establishing a homestead. It's just taking too long to recover from my strokes. By the time I'm functional enough to do it all by myself, my dying heart won't let me. The latter part of last year and the first part of this year has been me being bluntly honest with myself. Isn't that what a birth of a new year suppose to be? Maybe it's just a "me" thing.

Ever heard, the more things change they remain the same? Well, I'm in for a big change in a couple of months. I'm leaving the only city I've ever had "roots" ( lived in for more than 5 years) in. I've gone back and forth on my decision for months. You've read it all here and now I've decided. I need a new start and some fresh scenery. It's another "what do I want to be when I grow up" move for me. I've already had to do this four times in my life. It will be my homestead dream also with a twist.

The situation isn't money related. I've got enough to live comfortably for the rest of my life... just as my beloved originally planned although not in the way we planned. Still God is good and faithful. God opened a window of opportunity for me. I have prayed long and hard about it for several months and come away with peace that I'm following Him.

Do you remember when I went up to north Georgia to buy rabbits in October? I met the woman (I've been talking to her for years) who had a homestead, but was building it with .no idea what she was doing? Yes, I'm talking about Mel. She offered me a place on her homestead. She had her prayer answered and found a job which meant she had less time for the homestead property. So I'm moving there in two or three months. The reasons behind and leading up to my decision are pretty plain. I need her and she needs me.

I looked at how busy my children and grandchildren have become. They no longer have much time for me...maybe every two weeks or so. And that's the only daughter I have living an hour away. The rest are hours away. I could actually be dead that long, long time before anyone missed me. Now that's a scary thought.  I miss the companionable chats or silence I had with my beloved. How much help I actually needed was examined too. Or at least it would make my life easier.

For instance, I've been on this peanut butter and jelly sandwich kick for about a week now. Well, it came time to open a new jar of peanut butter. I placed the jar under my affected arm and tried to open it. I love having my shoulder back! No luck. The jar wouldn't budge. I placed the jar between my knees. Again no luck. I was cursing myself for not buying one of those nifty jar opening gadgets. I finally got the plastic lid off by running it under the hot water tap. This was only a stinking, plastic lid! I still had the foil-paper liner to deal with but because I had put it in water, the paper came off in tiny pieces. Yeah, it's a tiny, kinda no nothing example, but still.

Think of how hard it is to open Immodium pills, after a painful, time consuming,and energy draining session on the 'mode with business and clean-up. Knowing that if I could just take these two little, blast pills it could stop another session. But before the next bout sends me scurrting to the bathroom again, I have to take the pills. No, but  first, I have to pull off the paper backing and then push the plastic on one side to get the pill through the foil backing (if the pill doesn't disintegrate). Or when a new pharmacist doesn't reads the instructions on his computer about using non-child proof lids on my prescriptions. It leaves me to put the bottle in my mouth to manipulate it to open it. Wet teeth does a fantastic job of ripping the prescription number that I have to call in for refills with. Child-proof I understand, but really! Having someone around who actually HAS two working hands would make all this unnecessary. Of course, I'm listing only mild irritants, but think if it were one of a thousand other things I cannot do or easily do?

I take pride in myself for a never give up attitude, but it gets extremely tiresome. Nothing worth having comes easily, is true, but does the same thing apply for picking a hill instead of a mountain? I mean if it gives you the same results? In this case, I've tried doing everything totally alone for almost six months.  Lord knows, there are plenty of mountains I'll have no choice but to charge up to achieve success. I think I'm capable of doing that if I conserve my energy for the summits. I sure ain't getting any younger.

So my physical location may change but the Murphey Saga continues.

Sunday, January 10, 2016

Sunday Stroke Survival: Ya Gotta Love Those Mini Tropical Vacations

I keep telling y'all, it's all about attitude. How you perceive things in and around you can make or break whether you are content and happy, or miserable and unhappy.

The way you function after a stroke is no different. You are more likely to be more productive and successful with a positive attitude than a grumpy, discontented, and negative attitude.

It's a fact of life that, if you are female, the change of life (menopause) will occur if you live long enough. One of the side effects of this is hot flashes. I look at these as personal global warming events or mini tropical vacations. They are absolutely miserable in the height of summer or a welcome burst of heat in the winter. Everybody and their sister touts a "fix" for this condition. It's that big of a thing. A huge multi billion dollar industry is devoted to relieving them.

My conjecture is... why bother? Yes, it's a physiological body reaction to the end of the productive cycle of your life, by why try to fix something that is natural and unbroken. Just like the real global warming, be it man made, or a natural occurring cycle... it happens. Accept it and move on. It's all about attitude.

For me, I look at them as mini tropical vacations. Let me grab a pineapple juice, my sunglasses, a fan, and lie back in a lounge chair basking in the heat of the sun. It's  an honest to God, me time. Nobody else can enjoy these moments with me. It's all about me. How many times can women actually say that!

It being winter in the northern hemisphere has it's advantages. When one of these moments hits, I can grab a t-shirt or tank top to wear. It could be freezing or below outside, but I'm in my own tropical paradise lounging on the beach. How cool is that? Wish I could take y'all with me while you are crouched beside a heater, in your heavy sweaters trying to get warm. My internal heater is working overtime.

I'm lying on a beach in 80 degrees weather basking in the sun. While you are turning various shades of blue because of the cold, look at the rosy, sun kissed glow on my cheeks. Your hands are cold and going numb with it? Grab hold of my arm, your hands will be toasty in no time. Have blankets up to your nose in bed and still cold? Come on over for a snuggle.

Yes, there are definite advantages to hot flashes in the winter. But summer is a different story. Everyone else is basking in a tropical sun while you are walking on it. They can be pretty intense during the summer. I take time out during these times. I lazily lounge on a deck chair with a glass of iced tea. I found citrus juices go a long way in putting fluids in your steaming radiator of a body. I'll don my swim suit (mentally) and sunglasses. If you keep running a car on a overheated car you'll kill your engine. The same goes for your body.

Fortunately/unfortunately these are not constantly occurring events. They stop as quickly as they start. Everything is cyclical in life. What goes around will come again. So enjoy the cycles in between and during.
Be Victorian
Be Mysterious
Be Sexy
Nothing is impossible.