Thursday, February 28, 2019

And the Waiting Begins Again

Well After a whirlwind trip to Atlanta in two days, I finally completed all the prerequisite steps for the SCS (spinal cord simulator). I had my MRI and psych evaluation.

Whether I passed the psych eval is a huge question mark. I know from research that I threw a couple red flags in it.The biggest being my history of alcohol and drug addiction. The fact that I've been clean for for 33 years and was a court appointed counselor should offset that some. My PTSD is another red flag as is my fibromyalgia, I can do nothing about that. I can only hope that my coping skills in place for decades will offset these. That will be left up to the neurosurgeon's discretion. He said it might, but then again it depends on the neurosurgeon, but he didn't have a problem.

The damage to my spine which will show up on MRI should not be an issue because the implant will be higher for my upper limb pain and spasticity. But, the degenerative arthritis in my cervical vertebrae might be. 

I just don't know and it will be ten days before I do. ARGH! I waiting again! But it's only ten days.

On a lighter note, we have a new addition to our household. A 9- week old pit bull mixed puppy. Her father was a German Shepherd /Labrador cross. We've named her Kassity. Her Gaelic name means she whose full of love. It suits her. We'd forgotten how labor intensive a young pup can be. Maybe, it's because we getting older. Nah! That can't be it.

Yesterday, Mel tired her out walking to the creek twice about 1/4 mile round trip. It exhausted Mel too because it's all downhill or uphill going. She's still trying to make friends (annoying) all the multi-legged critters on the homestead. Only Nnyus, our guard dog, accepts her for now, but she's only been here since Sunday. We've begun training her the moment she got out of the truck.

On a sadder note, Nnyus who we thought had a cold with coughing turns out to have heart worms. So much for the hundreds of dollars we've spent on the preventative medicine. The arthritis she's had in her hips is actually hip dysplasia. Nothing can be done for either condition so we'll eventually have to put her to sleep, but that's not today. Today, she's teaching the puppy chicken corralling. The chickens have no idea how to take this fifteen lb (yes, she's gonna get big!), yipping, bundle of energy.

She keeps on wanting the puppy to follow her around the five acres she considers her domain. Only two acres are ours, but she claims three acres of our neighbors' property as hers also. They don't have dogs to guard it nor fences to keep out predators. But the little legs on the puppy frustrates her. She'll just have to wait until the puppy grows up a bit.

If nothing else, our critters will make the waiting time goes faster.

Nothing is impossible.

Sunday, February 24, 2019

Sunday Stroke Survival: Unwritten Rule Shattered

I don't know about y'all, but I've had this unwritten rules wherever I live. What is an unwritten rule?
A rule, usually concerning social behavior, which is known by all but spoken by none. This rule is neither official nor written down. It just is. - Urban Dictionary Online
I have very few of these. Actually just two and one no longer applies.

1) When my children were living at home, no adult figure would contradict another. Agreements were made before hand on discipline. None of that wait until your mother/father gets home. It also stopped children from playing parental figures against each other. This does not apply to my grandchildren though. I'll deal with their parent/my child later. I'm a firm believer of fairness. I also reserve the right to spoil and then send them home. I am, after all, grandmama.

2) The two adults in a household cannot be injured or sick at the same time. I can think of only two other occasions in over 45 years when this was broken. Once was when my husband and I caught the flu. But we had two teenagers that were capable of looking after their younger siblings (and us). The other time was when I had my stroke. By then, our children were grown and could step in to care for my terminally ill husband so it worked out.

But this week takes the cake. Mel and I shattered this unwritten rule. Last weekend until Tuesday morning, I was in horrendous pain with spasticity in my arm. As a by product, my arm was up to my chest and locked there. My shoulder muscle screamed at the constraint,  my trapezuis formed an even tighter bands which strained my neck muscles resulting in a tension headache that wouldn't quit. Occasionally tears would roll down my cheek after I had taken all my medication (even Tramadol) and was counting the hours and minutes to take more.

By Tuesday, the spasticity finally relented. But Mel awoke with her jaw swollen. Her teeth had abscessed.  I thought at least the unwritten rule was followed. I was better with my pain only being a 5 out of 10, I was able to care for her and our homestead. She'd just completed sewing a thick, snugly bath robe and she all bundled up in it with a throw blanket over her legs. She was 101 with chills. The whole right side of her face was swollen and blotchy, poor thing!

I finished preparing the goodies for my bi-monthly stroke support group meeting. It was drizzling outside as I loaded the 4-wheel drive truck. I'd already tangled with our uphill driveway and knew my van wouldn't make it, but that's another story. I made sure Mel was as comfortable as she could be with plenty of fluids before I left. The drive to the neighboring town was uneventful. The meeting was a good one about community resources.

It was pouring rain when I left the meeting. I have difficulty getting in and out of Mel's Chevy Slverado because I'm short, but I manage. I got home and pulled into her parking spot, got out (slid off the seat onto the ground), and landed in a muddy puddle. Oh, great! Now, I'll have to change my pants, socks, and shoes! I made my way around the front of the truck and slid in the clay mud. I stopped myself from falling by twisting and grabbing the hood of the truck. The fall was averted but I didn't come away unscathed. I wrenched my braced leg about the knee.

I didn't think much about it. I grabbed my containers from the passenger side of the truck and hobbled inside. Later while fixing dinner, my affected leg would barely hold my weight. You guessed it. I had sprained my knee. The next morning I was worse for wear. Still our animals needed to be cared for. Mel was still feverish.

I still managed to make my two appointments at Emory. By Friday, I was still hobbling along with difficulty. If it's not better by Monday I'll call my primary care physician for an x-ray or MRI. The good news is Mel is finally on the mend. So this week, I once again shattered my unwritten rule. I hope it doesn't happen again any time soon.

Nothing is impossible.

Sunday, February 17, 2019

Sunday Stroke Survival: Yet Another Trip to Emory!

My appointment with Dr. Boules' partner happened on the 4th, Instead of writing another scathing post of the long, drive, the fighting Atlanta traffic there and back, and the rests, I decided to wait a few days to post.Y'all by now now it's winter and the trip to Atlanta hasn't gotten any easier.

I decided last year that this was going to be it, as far as these trips if I wasn't satisfied with the results. I wasn't going to waste another year in pain without something positive happening. I'd go back to Botox injections, if I had to.

Well as usual, I arrived 30 minutes early for my appointment. You can never tell whether you'll run into an accident or something else delaying you like trying to find a parking spot and having it be a 1/4 mile walk to the office. Even though my gps thingy says travel time from my front door to theirs is 65 minutes, I always allow myself two hours. My jogging days are ancient history. I could say I gave it up for Lent, but it's been almost seven years. (Grinning) Anyhow, I checked in and took a seat. I plugged my ear bug in and queued up up the latest Audible book I purchased.

At the allotted time,  my  name was called. The nurse couldn't get the automatic blood pressure machine to work. I told her that those machines didn't like my low blood pressure. After three attempts, she finally took my word for it. Oh darn, she'd have to do it the old fashioned way with an actual stethoscope. (snort) I was nursing long before those new fangled machines were created. I believe today's nurses depend on machines too much. Anyhow  she got my blood pressure after two attempts. 90/59 with a pulse rate of 72. All my meds were keeping them right where the cardiologist wants them with minimal stress upon my damaged heart and valves.

In saunters Dr. Boules' associate. He mentions the two options he was considering a baclofen pump or a SCS (Spinal Cord Simulator). He started explaining the basics when I stopped him. I in turn began telling him about the four years of research that brought me to Emory and why. He quickly realized that I wasn't an uneducated person. We started to discuss the matter in best outcomes and most benefits for my specific case. I simply cut out the preliminary BS.

We both agreed that the SCS was the best option while awaiting the more permanent rhizotomy. There were two hurdles to jump through, a MRI with contrast of my spine, and a pysch exam required of all pain management patients. The MRI is scheduled for the 26th at 8 PM. While I don't relish the idea of driving to, around, and from Atlanta after dark, I'll do it. The pysch consult, they'll call me back with the date.

Am I worried about either one? Nah. I love playing with the minds of professionals. (wicked, evil grin) As far as the MRI goes, it's like an old, comfortable pair of shoes. I've had so many since this scanning technique was born in the 80s, I can't even remember how many. I usually nap through them. Again there is hope for pain relief and function.

Nothing is impossible.

Sunday, February 10, 2019

Sunday Stroke Survival: Feeling Guilty?

Have you been feeling guilty as you are living post stroke? Have you not performed your rehab exercises, or even quit doing them? Have you changed your goals to take it easier on yourself? Have you lost all hope of ever recovering and just getting by and settling?? Insert anything you are feeling guilty about here?

My first question to you is why are you beating yourself up? You are being your own worse enemy.

My statement follows this is why beat yourself up when I can be the bully here. Pretty please, let me be the bully. I know you can't see me but I'm wearing my wicked, evil grin. MUHAHAHA!Although being wicked would be more fun for me. Why won't anyone let me mean and wicked? Oh, alright. Be that way. I'll just throw facts and logical arguments at you then. 

 Only you can make you a failure and fail. Only you can give up and quit trying. Everyone around you won't care about it as much or have as much to lose as you do if you quit trying.  Everyone around you will either take the view of a) this her standard m.o., or b) "Poor thing she gave it her/his best. Such a shame too. She/He had such potential before this happened."
  1. Nobody will kick themselves harder than you. As I said, YOU are your own worse enemy.
  2. You can't buy or bargain your way out of feeling guilty. No matter what bargain you make or how much you buy won't stop the guilty feelings.
  3. You can't change others if they don't want to change. By the same token, only you can change you.
All that being said, how do you stop feeling guilty?

  1. First you analyze why you feel guilty.
  2. Be bluntly honest with yourself.
  3. Fix it! Then stop the guilt trip.
Have you lost all hope of recovering? Are you tired of of doing the same thing and seeing no results, or like me, losing ground and sliding backwards with no brake pedal in sight? I'm writing this as much for you as much as for me so you can see how I hash these thoughts out. 

I've been working towards recovery for almost seven years now. I've actually backslid to the point where my balance is so bad I'm thinking of getting a quad cane.I'm falling or almost falling at least once a week if not daily. I've lost the range of motion in my affected arm and shoulder after recovering all but my wrist and three fingers. The last year of searching for alternative treatments are unresolved and I'm taking even more medication than ever before. My proactive side has taken quite a beating. It has been whittled down to nothing.

Why not stop and give up? Admit defeat. Haven't I given it my all with nothing to show for it? Aren't I justified in feeling like this? What do I have to feel guilty about? But, I do. See, I'm not any different than you.

BUT  There's that word again!

Doubt is a two sided coin as is guilt. You can go around and around between the two sides. That's the neat thing about changes you want to make in your life. You can always change your mind and try the other side. Barb Polan recently felt like a quitter and thought she was settling instead of her being her proactive self. It took others, stroke survivors, to show her she was neither. If there's one thing I've learned over the half century alive is that life changes constantly. Often, it's in the blink of an eye. You either roll with the punches, or they'll flatten you as they steam roll over you. YOU make the choice.

I guess I got my answer. How about you?

Nothing is impossible.

Sunday, February 3, 2019

Sunday Stroke Survival: Small Talk Socialization

With Aphasia, sometimes making small talk is challenging. Often us living post stroke folks shy away from situations that require this type of interaction. Or, we go, but say very little.It's difficult making small talk when you have to think about every word before you verbalize it.

But still, I do try, but I'm not always successful. It is easier in a structured environment when most of the talking is about a narrow topic. It might seem strange to say this when I write a blog every week and sound very convincing and learned. But writing a blog is different than speaking one on one. Yes, I can be convincing and learned in a conversation with someone else, but they need the patience of a saint to be able to listen past what I'm trying to say for me to be effective.

This is where Mel and I mesh so well. She has the experience of her speech therapy training to help me fill in the blanks. She'll ask leading questions to decipher my gibberish moments and translate them. In this respect, I'm luckier than most aphasics. I'm thankful for this blessing. It takes very few words to get my point across. When we're out in public, she serves as my go between without others being aware. We just seem to be on the same page as she chats in finishing my thoughts when I stumble in my speech.

There are a lot of times when I'm without her and have to muddle through. I was in Walmart today. It was a colder rainy day. As usual, I had to wait on a motorized shopping cart. I saw a woman riding through the exit. "Ma'am, I ...need...that... you're done." A simple enough phrase, right? Even with the pauses. The cold and wet affected my voice so it came out froggy, loud, and badly slurred. Still, I got my point across with hand gestures. The lady nodded, grabbed her cane and bags, and she gave me the cart.

Now, two or three word phrases don't pose difficulty for me. I've mastered most the common ones very well over the past six years. "Thank you" and "God bless you" being the most common for me, but others come with a price of slurred words and longer pauses come into play.

I reached the checkout when I realized that I had left my ATM card at home. I reached up and took all my items off the conveyor belt and put it back in my basket muttering to myself, "Stupid! Forgot it!" I wheeled myself to the front of the store and left the cart full of my stuff.

It was pissing rain outside as I made my way to my van. I was still belittling myself as a man walked over to me covering me with his umbrella. I started to protest that I was parked two cars down from him and I was fine. The words other than thank you came out as gibberish. The man shushed me and and said, "Let me bless you." Who was I to argue with that?

I drove home feeling thoroughly blessed. I grabbed my ATM card and headed back to the store. I was under no illusions of expecting my cart of shopping to still be there. Yet lo and behold, there it sat. Someone had been kind enough to turn it around so it faced inside the store and turned it off to preserve the battery  power. There wasn't anyone around so I said, "Thanks to you, Lord and bless that kind soul." The words didn't come out right, but Jesus speaks aphasia too.

I picked up my remaining items and headed for the checkout. I had to pick up lighters to light the wood stove with. I paid for my items. As I was leaving, an elderly man pointed at my cart. The words were a loud gibberish. I nodded and grabbed my bags and cane, and gave him a knowing cockeyed smile as I handed over the cart to him.

As I was walking to my van a young woman with a small child in tow approached. She had an umbrella. It was a huge golf type umbrella which shielded all three of us. She waited patiently as I unhooked the bags from my spastic affected arm. She waited until I was n my van. "Thank you. God bless you as much as you blessed me today," I said to her. I didn't slur or stumble once.

Nothing is impossible.