Sunday Stroke Survival: Making Do and Getting Help ~ Ranting

It really irks me to no end when I have to ask for help for something I used to be able to do before my strokes. When I was sixteen I rebuilt my first automobile engine. By thirty, I could rewire a house and do major plumbing repairs and installations. It helps being the daughter and sister of a certified electrician, plumber and welder (my dad) and four brothers who are H&A installer/repair. I watched and learned. They even taught me hands on. Having a contractor son in law and being a lay carpenter was added to my skill set. There was not much I couldn't build or repair. Then my stroke changed all of that.

I mean pre-stroke, I could literally do it all. A Jill of all trades. Just like my father was Jack. Now, I have to call someone to do it because I can't safely. You know me. I'm not opposed to taking some risks. I almost relish it. Now, living post stroke everything is weighed against safety versus doing. If it were just a matter of falling, it would be no big deal. Heck I've done that too many times. Only some have been mentioned here. Ya, ya, I'm getting older too. But it really irritates me to have to pay someone else to do something I know how to do. This is life living post stroke and I dislike it intensely.

I just received the estimate on the new driveway. It is actually cheaper by several grand than I estimated. I'll admit this is one area that it's cheaper and easier to have someone else do it. I didn't relish the idea of moving and spreading 120 tons of gravel. I don't know anyone who would if they had a choice.That much rock is hard to imagine much less put it where it needs to go. I mean two tons of pea gravel didn't seem like much when I built my shade garden at my old place, but I did it. Er, um twenty years ago.Ten years is a whole lot of age on this body now. The young man who owns the company was eager to please and I'm happy I chose him for this project.

But the electrician and plumber? I mean really? This is what gets me. I could have trenched, laid pipe, and done all this electrical stuff myself if I had a working body. What I wanted were easy tasks. Instead, I'm paying someone else $65 an hour to do it. It's killing me. I'm talking their language, because I've done it all before. My father and I even dug a shallow well, connected the pump, and set up the sprinklers in their 1/4 acre garden. It's not rocket science, it's only manual labor. I've never been afraid of a little hard work.I'm still not.

My driver's side door handle broke off. It literally broke off in my hand as I went to get into my minivan two weeks ago. I, of course, landed on a thick grassy area beside the driveway with the most padded part of my body still holding onto the plastic part. Nothing hurt but my pride. Then came the ordeal of climbing in through the passenger side, around the engine hub, and into the driver's seat before I could go anywhere. With the outside handle broken, I go through this ordeal every time I drive. Getting out from inside is no problem. I just leave the window open when I get where I'm going to reach in and open the door. Of course, I'm saying a quick prayer it doesn't rain while I'm inside wherever I'm going.

How hard is it to change an automobile's door handle? Pfft! It's a no brainer. Pull the door panel, disconnect and reconnect a couple of wire (electronic everything in the door) and a couple of screws. Except I can't finagle my body to do it. I did try. I had to call someone else to fix it. No mechanic or parts store in town had a replacement handle.  Worse yet, the closest Toyota dealership was three towns over. I made an appointment with them to replace the door handle. I get there as scheduled only to find the handle is on back order and wouldn't be in the dealership for two weeks. So in the meantime, I was stuck with going into my vehicle from the passenger side. To add insult to injury, the charge for the handle and for the labor to install it...$322!

Talk about add on expense to having a stroke. I could watch millions of dollars (if I had it) trickle away just because I can't do any more. I make do and do what I can, but when I can't because my body won't let me is ridiculous! I'm just ranting here because I can. Call it the hidden cost of living post stroke. If I was an ordinary person without my skill set, it wouldn't bother me so bad. But I've never been ordinary.

Nothing is impossible.

But in this case improbable.

Sunday Stroke Survival: Why Me, God?

You ever ask, "Why me, God?" as it pertains to your having a stroke? Most people do. Or, something along those lines of thoughts or rantings? I have to say that I have never asked this knowing there HAS to be a reason, but that doesn't make living post stroke any easier for me either.

Yes. It's that time again. I was hit in the face with this yet again by a stroke survivor this week. I'm still doing ministry work as a stroke survivor to other stroke survivors. So I'm addressing it here too. This person was also quick to laud their Good Works. I'm a good christian. I go to church every week. I say my prayers. I have a in dwelling Spirit. I help the poor and down trodden. I not only talk the talk, but walk the walk... the list was longer but you get the point.

(I'm using the male pronouns here though it could easily be a female)
I understand that the person is a "good" person by his actions and deeds. I also recognized he is going through the grief process (anger) over losing half the function of his body. Until this stroke, he had a very physically active, healthy life. He is still a young man, 36. He was "struck down" in his prime like so many suffering hemorrhagic strokes. By all accounts (risk factors), this shouldn't have happened to him, but it did. It happens.

How can I, a mere mortal, make this person understand that God didn't do this to him? Sometimes especially just after a stroke, the survivor isn't really looking for an answer to his question. He is asking someone to listen to him vent. This was the case this time. But later, when he is truly searching to an answer, I'll be there also. Far be it from me to know exactly why God allowed this to happen to him. I know that the doctors can tell him why medically what happened, but spiritual matters are out of most physicians' league. It takes a doctor of another sort, like me, to help them wade through the quagmire of doubts, faith, and finding answers in a book that's millennia old.


After a while, asking God for the answer feels like HE isn't listening. But HE is.

I know the pat answer is, "You aren't ready for an answer," or "It's beyond our understanding." Yeah, I've heard this too many times from ministers over the years too. I don't use these phrases. If I don't know the answer I'll say so. I believe it's better to be honest than offer some trite phrase. In their defense, they mean well. I'll pray about it and wait for the answer. you may also notice I rarely quote Bible book, chapter, and verse. I do this on purpose. Not because I can't back up what I'm saying with them, but the message is more important than the reference source here.

Sometimes, the answer comes years later. Sometimes, the answer comes in little snippets over time. Sometimes, when you least expect it, it will be a revelation that you didn't realize until you think back on it. Sometimes, it's answered in a loud, booming voice saying, "Not now!" (This personally irritates me and He knows it) It's no big surprise that patience is not one of my easily learned virtues.Sometimes, the answer comes in the form of a total stranger. I never know how God will answer my question, but He always does. It takes faith and patience. There hasn't been a burning bush since Moses.

Most times when I'm asking (yelling) for God to answer me, I don't have a quiet, listening spirit. I'm usually in the midst of turmoil. Isn't that when most people call of Him? I'm guilty of this too. I'm angry, hurt, or desperate. You too? Whew, glad it's not only me. It's like talking to an irrational person. Why waste the energy? They are too busy in the midst of whatever it is to really hear anything. Even in prayer, my mind and heart are in a jumble. Often, I receive an answer right before I fall asleep or when I awake. That's when my mind is the quietest. On rare occasions, it's while I am listening to the radio. (I listen to a christian music station) I remember once, I received an in Walmart from a stranger waiting in the checkout line. I don't think she even knew what she was saying. The point is that you have to be receptive. You may not even know you received an answer until much later an have an AH-HA moment.

What is your reason for "Why me, God?"? I dunno. For every event there are dozens of reasons why this happened to you in particular. That's being honest. I don't know all the particulars of my strokes. I do know He needed me here doing what I'm doing. How do I know? I have peace in my spirit and have gained abundant blessing in my life. The ever present encouragement I receive and souls that He's retained continues to grow as this ministry grows.

Nothing is impossible.

Sunday Stroke Survival: The Queen of Abby Normal with Attitude

This week I made triple berry jam the way my grandmother used to without pectin. I found out last year that Mel does not favor strawberries. That was after we planted a dozen strawberry plants. So we harvested raspberries, blueberries, and blackberries last summer, as well as strawberries. I put about a quart of blackberries, raspberries, and blueberries into the freezer for this triple berry delight jam just for her.

While my latest A1C was 5 (optimal), I still basically eat like a diabetic. In other words limited refined sugars. I've been doing combat with my blood sugar since my stroke bottomed out my blood sugar. In one evening, I went from an insulin dependent diabetic to just the opposite...hypoglycemic (low blood sugar). I even eat two fun sized candy bars a night so my blood sugar doesn't bottom out while I sleep. Not that I mind. :o) But still my A1C comes out at about 4.6 or 5 every three months. Go figure! Don't try this at home folks. I'm the Queen of Abby Normal. All hail the queen. No doctor can figure it out. I'm just thankful. I make my strawberry jam without sugar.

In some ways, I feel abnormal about a lot of things I do. I knew my quirkiness suited me well while writing, but in real life, I was just different. My mental acuity was higher than those around me.  As a child, I'd rather sit with my elders and absorb what they had to say rather than be with others my own age. Kids my own age had nothing to teach me. At 16, I was doing college level course work and going to seminars to be happy.

Now as an older adult, I chose to go backward in time to homestead. Even being partially paralyzed from multiple strokes hasn't slowed me down much. Sure life would be a lot easier without the paralysis or spasticity, but I'm still doing. Even though, I believe, nobody in their right mind would choose to have a stroke. Life happens and it's not always good. There are situations beyond our control which happen. It happens to everyone worldwide. So what saves a person like me from total despair? My attitude. I don't believe there is nothing I can't do. No matter what if I want to do it. Nothing is bigger and stronger than my Father in Heaven. Being His child shouldn't I be able to do it too? I believe so.

So I use quantitative words for my shortcomings like "yet" when I say I can't do something like keep my inverted foot straight to walk without my AFO. "I can't walk without my AFO yet." I believe I will one day. I try to do it daily. This morning it was "Nope, not yet." That doesn't mean tomorrow I won't. Until then, I'll just keep trying.

That's not to say I don't get frustrated with this waiting game. I honestly do. I'm also childish and want everything NOW! So how do I deal with the situation? I could sit and pout. I could throw a temper tantrum. I could yell at the world. I could do a lot of things that will not help me at all. I'll do something for someone else. Then I don't feel so useless. I don't sit on the self-pity pot any longer than necessary. In this case, make my triple berry delight jam for Mel. At other times, it's knitting baby booties for the crisis pregnancy center. Believe me, I've made a lot of booties this year. I take what I can do and to downgrades what I can't. It feeds my ego and my sense of accomplishment. It makes me feel not useless.

Yes, I'm the Queen of Abby Normal with attitude. All hail the queen! Won't you join me?

Nothing is impossible.

Sunday Stroke Survival: Time for a Change

I wanted to ask y'all some advice. I've been on a Zanaflex, Baclofen, Botox, and even valium regime since my stroke for high tone and spasticity. They have even recently upped the dose to 500CC of Botox with the extra 100CC going into my arm. Needless to say, I've spent a small fortune on this. But still, the spasticity level and pain it causes is increasing. All of this is beginning to feel like a losing battle and I hate it.

Before my spasticity progressed to moderate, and then to severe, I had voluntary movement of my elbow and two of my fingers. Now, even with all of this and weekly dry needling sessions, I can't  extend my elbow and have nothing voluntary in the fingers at all. My ankle no longer supports me without inverting. According to my OT and PT, I'm doing everything I should and can do. I've hit a major frustration point in this. I feel like I'm up against a brick wall and can no longer chip away at the mortar holding it together.

Is it time for a change???

What works for others with this condition? I understand this neuro-spasticity  is a mystery. My therapists and neurologists have talked at great lengths about the subject. I'm not taking just their words for it either. I've done quite a bit of research on the subject myself over the years. A lot of neuro deficits from my strokes, I can fight to recovery from. But this part I'm having trouble with. I'd call it quits and be okay with it if it wasn't for the pain that goes along with it.

I live and want to live life to the fullest, and I can't do it in pain. Having fibromyalgia just makes it worse. Pain, any pain, is amplified ten fold at a minimum. I've dealt with my condition for over a decade. I discount my pain levels mentally with meditation and stubbornness.I refuse to be held down and stop moving. This stubbornness isn't without its own set of problems. I do take everything slower on flare days, but I just don't lay in bed all day. I get up and do to the best of my ability in spite of the pain. In some respects I do not feel "lucky" that sensory nerves were not damaged by my strokes. I could honestly use some relief from all this hurting. But then, I also want to be a zombie taking this or that pain killer either. Aging hasn't helped. That in itself brings a whole host of other problems.

So I believe it's time for a change. After five years, there's got to be a better solution. I've been looking into baclofen pumps. Do any of my readers have one? I've got a few questions for you...
How long have you had it?
Are you satisfied with the results?
Would you do it again?
How weak does this IT unit make your functioning side?
How well does it work on your upper limb? Everything I've read said not very well. This is my main issue with it.

Having a pump is said to work better than the oral medication because it is delivered directly into the spine. This isn't a cheap option since the surgery alone is $30+K. The medicine to refill it has to be bought every 4 weeks (for a smaller unit) to up to every four months. It can cost up to $500 per refill. That's not my cost between Medicare and BC/BS. I expect to still pay out of pocket for some of it though.

I'm not a vain person so having the unit bulge my abdomen doesn't matter. If it works...then it's priceless. I'm not expecting miracles here. I'm desperate.The decision is still at least five months away for me. It will be my Christmas present to myself for a happier New Year if I decide to do it. I found a neurophysicist, at Shepherd Center, that performs this procedure 45 minutes from when I live, just north of Atlanta, so commuting will not be a problem for follow-up appointments and therapy. Like I said I've been researching it for a couple of years.

On the other hand, maybe just change up my drugs. But in everything I've read, I'm already on the most common ones. With my history of drug allergies, that's a scary proposition. But also given my history with general anesthesia and my heart stopping, that's even scarier. Mind you, I'm not a 'fraidy cat. I have some serious risks, but risk factors are weighed against the my decreasing quality of life.

As I've said before, I was well on my way to full recovery of my arm and leg before the spasticity set in so bad. The dry needling even with an electrical current running between the needles only gives me about 16 hours of relief from the pain and only 12 hours of relief from the muscle spasms (done weekly). That's with Botox 500CC 4 times a year), and 3 muscle relaxers, at almost maximum doses, that I take daily. I'm just tired of fighting this losing battle. If something doesn't work... fix it!

Nothing is impossible

Sunday Stroke Survival: Snatching Defeat from the Jaws of Victory

I know. I know. I got the title backwards, didn't I? But after a stroke and living post stroke for more than five years, it sure feels like it. I hear you all now. "Whoa! This doesn't sound like the Jo we usually read." But just hold on a minute. You know that's fixing to change. Or at least you hope, right? Or you are sighing and saying, "Jo's on the pity pot again."

I'm in this weird mood, so be forewarned. I can get very retrospective at times like this. What's the reason behind this mood, you may wonder. I've been people watching again...mostly Mel.

What we thought was a sprained wrist turned out to be a broken one. Her dominant right wrist. I've been watching how she is handling it. She's never had a serious illness, broken bone, stitches, or anything medically wrong with her in all her life. That's almost sixty years folks. Other than depression, she's led a charmed life until one night she tripped over her TV tray. As she puts it, "I couldn't break my wrist by doing something cool. I had to do it by doing something stupid."

But really, isn't that always the way?

So I've been doing a comparison between how we each handle the one handed life. We are kindred spirits and alike in attitude. So it's been interesting. Nothing shows true attitude like how you handle adversity. Of course unlike me, she has use of her fingers and can pull the splint off. She does this more than she should. Especially in times of frustration until pain causes her to put the splint back on. She's a grown woman, I should only advise her once on what to do. After that, it's her choice. So I've been watching her for the past couple weeks.

At first, I listened to her moan and groan about typing one-handed. She's writing a dystopian novel. Yes, I understand that particular hardship. As the picture suggests, Mel a charter member. This where we differ. Instead of first trying to figure out how to do something, she'll gripe about it first. I order to nip it in the bud now, I hold up my right arm and say, "Hello!!!??" There isn't anything she can say that I haven't said a million times over the past five years. She'll be in the splint for two to four more weeks. It couldn't have happened at the worst possible time. We're busiest on the homestead this time of year. But it has been and interesting observation.

It's not that I don't empathize and sympathize about her struggles. I can and do. But I listened to this for a couple of weeks of how she couldn't do anything, before I started with tough love. She had to get up and do. Between us we have two working hands. Granted they are both our left hands, but still. Two crafty women, like we are, should figure out how we can get things done.

Sort of like this

Our current project is the new rabbitry and chicken areas. These two areas are built with pallets and cattle panels. The biggest and hardest part is digging the holes for the post supports. She gets on one handle and I do the other one. Having hard, compacted clay to dig in isn't making this a quick process. We are managing two holes a day but we are getting it done. We had one 24' wall complete before I left for home. That's a major accomplishment. Now we have to do the other side. Mel figured out she could push the handles open without causing pain so she planted some 4x4x4s while I was gone. All it took was me giving her a kick in the pants to get her started.

Before I left for home we were watching Netflixs and doing assorted tasks. I am knitting baby bunny rattles for the local crisis pregnancy center and Mel was rolling cigarettes. Yeah, I know. I know. But I pick my battles. The pain of using her fingers got to her and she was messing up the cigarettes. She shaking her head, tears rolling down her cheek and she was whispering, "I can't. I can't do it."

Ouchie!

I looked over at her and told her to clean up her mess and stop for the night. We'd had a full day of animal care, one of our buck Angoras toenail ripped open one of his testicles. We had to do minor surgery. Her holding him and me doing the cutting and closing to neuter him. Three drops of morphine had him totally sedated while we worked. Well, he'll be a good wool producer, but not a breeder. We switched off doing therapy exercises on the other buck, Dustin. We had dug two holes and placed four panels for the rabbitry. We had dinner and cleaned up afterwards. We were both exhausted. I told her...
  We can only do what we can to the best of our ability and no more. As much as we'd like to do more or do better, that's the honest truth. You can only strive to do better. Never when too tired or frustrated. When those two factors are in play, you will only fail. So take it easier on yourself.

So are you feeling like defeat is being snatched from the jaws of victory? Maybe, it's your point of view. A defeatist starts a sentence with 'I can't.' A moderate starts a sentence with 'I'll try. An achiever starts a sentence with 'Watch me.' Sure first attempts and maybe the first ten times you'll fail at the attempt. Eventually, you will snatch victory from the jaws of defeat.

Nothing is impossible.