More Stroke Happenings ~ Aphasia

I write quite often about my aphasia...difficulty speaking since my stroke. Here is a aphasia recovery  support group. What they say is so true. Patience is all we require when communicating with us. A very enlightening video. This is mostly why I prefer online conversations rather than phone or in person chats. I'm actually a very social creature.

I have a couple major pet peeves with communicating with others in person on a whole...

Talking to me as if I AM RETARDED. I am not mental retarded just recovering from a brain insult...you know, brain damaged caused by oxygen deprivation and blood being where it shouldn't. My IQ is higher than most I speak with, so there is nothing retarded about me.

My readers don't do this to me just people in face to face meetings. I just have a problem recalling all that stored knowledge when I want it and have a problem getting the thought to come out of my mouth that is proper and understandable. This is tremendously irritating! For God's sake, stop it.

Getting up in my face and speaking very loud and slow as if I was DEAF. I actually hear very well. It just takes me a few seconds to understand what you are saying and formulate a response.  Getting that close and yelling at me will accomplish two things; it is very uncomfortable because you are in my personal space, and two, it's jarring and further jumbles my thought pattern. Whatever response I was going to make flies out the window and has to be arranged again.

Most people will repeat the procedure thinking I didn't hear them compounding my problem. Did you check your breath before doing this? I'm just saying.You can also make me deaf by doing this! For God's sake, stop it.

Don't repeat yourself four or five times because you think I may not understand. If I don't understand, I will ask you to repeat. Now, this wasn't always the case, but it is now. Most people don't realize I have a language/speech problem until I open my mouth to speak.

Especially since my stroke, I'm a very attentive listener. Each time you speak, I will stop what I was doing (thinking of your reply) to listen to what you are saying. As you can imagine, this is maddening! For God's sake, stop it.

THINK!

Nothing is impossible with determination.

Sunday Stroke Survival~ It's All About Balance

I'm trying to find my new normal after my second event (stroke). I don't know if I can do it but I'm going to try follow the stroke e-zine guides that republish me for March. I know it isn't March yet (almost) but they will publish the articles during March. So here goes...

It's all about balance in everything you do either as a stroke survivor or not.  I know the gist is supposed to be about balancing to keep from falling but I am taking a different tact because I can. :oP

I'm going to talk about rebalancing your life. You've heard the old saying, "All work and no play makes Jack a dull boy" or something to that effect? It is so true. When you don't listen to your body other things crop up to make you listen and regain your balance.

In the hospital and when I first came home for about three months, I was in rehab mode. In fact, I had little energy to do anything else because I was exercising three times a day! I was that determined I was to get everything back. I refused to compromise with what was. I had no energy to speak of to socialize. When I wasn't physically moving towards improving my body, I was attempting to improve the cognitive function of my brain and dealing with overcoming my aphasia issues. I was an automaton. Sleep, medications, eat, exercise, and rest. All because I was told that this was the way to get it all back in recovery.

Credits

Pain stopped this nonstop routine. I had torn my AC joint in my right shoulder in a tumble. Yes, I had to stretch it to get the motion back, but nothing as intense as what I was doing before. As a result the elbow, wrist, and fingers regressed. It took a total of six months of slow, painful healing to restore the joint. While this was going on real life stepped in. There were trips to the store, learning to drive again, and visitors to contend with. I began to socialize more as my aphasia lessened. I was regaining a balance of sorts.

But I was still doing leg exercises and walking. My daily walks reached almost a mile a day. If I couldn't work on my arm then I'd have to double my effort on my leg, I reasoned. Eventually, I'd get rid of the wheelchair, hemi-walker, and cane for good, if I kept it up.  My actual physical balance was much improved to where I could walk on flat, level surfaces without anything. I was pleased! The next goal was to walk outside on unlevel surfaces without anything.

But that wasn't to be. Enter the decubitus. Walking with the AFO caused a pressure sore.  The inversion of my foot worsened as spasticity raised it's ugly head. It wasn't enough that I had to contend with the Clonus that kept me out of a Walk-Aid, but now pressure sores too. Man, I couldn't win for losing. That put me off my feet because I could only be up walking for two hours and out of my brace for four hours. I was having to relearn another new balancing act.

Before my stroke I had medical issues like a bum ticker, diabetes, and replacement joints to contend with but before I could do almost anything I wanted within reason. Yeah, there were limitations, but not like what I've dealt with post stroke. Meanwhile the window of opportunity for full recovery closed or at least for a quick recovery. Granted there is the neuroplasticity factor but that takes years!

Umpteen dozen doctor visits later, the first pressure sore healed. So I begin PT again. I was still pushing for an 85% recovery at this point. I entered the revolving door of pressure sores on my foot. To date there's been six and no possible resolution except surgery to fuse the ankle in place to get rid of the AFO. Yes, it is as painful as it looks! The swelling gets so bad that my size six foot needs a size eight shoe.

With all of this going on my husband is getting weaker and sicker than he's ever been before, so I adjust my life style further to include all these changes except I've found my balance again. I have a rather sedentary interspersed with insane activity lifestyle these days. But in between I still do my stretches and exercises, spasticity and Botox allowing. I'm not so fever pitched on recovery. It will happen when it happens in slow increments. I take the time to enjoy doing things with my grandchildren and friends. I bake and cook again (a major love) with adjustments for my limitations. I garden, granted it's in raised beds and not almost a half acre. I care for and train my animals (4 hens, 3 meat rabbits, Buddy the Angora, Belle the Guinea pig, 2 German Shepherds, and 2 cats who rule the roost.

I've gone back to my guiding principles of "Don't sweat the small stuff and it's all small stuff," and "Death is the absence of learning." In other words I'm getting to know the new adapted me. I've remembered that God is in control and while I'm waiting, I have a life to enjoy. It may not be the ideal life, but it's the only one I've got to live. I've found my balance again.

So when you think about all the things in your life, it's important to have balance in all things.

Nothing is impossible with determination.

Post Stroke Encouragement

As y'all know, I spend way too much time on youtube and I'm an urban homesteader (survivalist).  I ran across an interesting video this morning on OurHalfAcreHomestead. Mrs. Volfie had a turkey poult that was prematurely hatched that appeared to have a brain injury.

It definitely caught my interest being brain injured myself ... a stroke survivor. It just goes to prove that you can learn something from the new "boob tube," the internet. It never fails to amaze me where my day's encouragement comes from to keep me going on.

As a stroke survivor, if we all had therapists so in tuned with our recovery as this woman, we'd all be whole again.


Take a gander. If you are not rooting for this tom by the end...there's something wrong with you.

 

Granted we are not turkeys. It takes us longer to relearn. But with enough encouragement, this sky's the limit. 

Nothing is impossible with determination.

Happy Valentine's Day

For a holiday that the card and candy companies thought up to drum up business, it's a happy day for me personally. I'm going to get mushy here.

Today is the 22-year anniversary of my husband asking me to be his bride. It has been a short and long time. If I had known what would transpire, would have said "yes" all those years ago? Yep! Because for better or worse, and in spite all the garbage that flushed through the pipes he is still my beloved.

Marriage is about give and take and bringing out the best of each other. Good and bad has a way ofbalancing out in the long scheme of things. I thank my ex-husband each and every day (although we rarely speak) for the bad marriage we had because I probably would not have appreciated my reward for going through the hell I went through with him. Yes, sometimes you have to suffer the bad to appreciate the good.

The saying, "you don't appreciate what you've got until it's gone" isn't true if you embrace what you've got daily. If you've got a relationship that you are committed to, that good or bad is more valuable as a whole, and you've found your soul mate stick with it. I've got that. I've got my knight in shining armor ready to battle against the whole world for me. A man who will stand beside me even if we disagree. I will miss that when it's gone. Will I really appreciate it when it's gone? No because I'll always be able to refer back to it.

So honey, this blog is for you. I don't write romance, but when you live the life we've lived who needs books.

Happy Valentine's Day y'all!

This Must Be A Red Letter Week~ Sore

There will be four blogs for this week. You haven't seen four? Just wait they are coming. That's the most I've blogged since October when I had my second stroke and my husband was put of hospice services. With all this putting words together and correcting it before I hit publish, I must be gearing up for something. <slaps my forehead> Oh, that's right. I'm a writer! Doh!

This morning I awoke at 3AM. I tried to get out of bed but had a real hard time doing it. Yes the spasticity is a factor, but it was all the stuff that went along with the Botox injections yesterday. Had you ever been stuck multiple times by someone who is drawing blood, or by someone who is trying to root around with an IV needle to catch a vein, or had an EMG done? Then maybe you can relate to the soreness I feel today.

An EMG (electromyography) has a needle like probe that sends signals to a machine that measures the activity. It is done to measure the nerve input to various muscles.

With Botox, it's an EMG guided needle and syringe filled with Botox. You push the needle into the muscle and move it around (digging) for the most activity...in this case, it's the strongest muscle spasm. It may mean going deeper or shallower, to the left or right and various points in between. Like I said yesterday this procedure lasted two hours for the 300 CCs worth of Botox to be injected.

I was heavy into my Lamaze breathing at times. It's really yoga breathing techniques, but I always called it Lamaze breathing.  I use it several times a day for various pain issues. It's basically focused breathing to over ride pain. I've used this technique for over 35 years in dealing with pain. Just like I've used various yoga positions to deal with pain also. Amy Shissler is heavy into a certain type of yoga for stroke rehab.

Before you poo-pah it, try it. You might just be surprised how well it works. But I digress.

Notice it doesn't say Cosmetic

We decided before the insurance denied the extra 100 mg of Botox for my leg that we (the neurologist and myself) that the main focus for the injection sites would be the arm. My pectoral (chest) muscles were badly affected by my stroke. Nobody ever thinks of those muscles. You gotta love a good working relationship with a neurologist. I've heard and had a few horror stories with bad ones over the years.

An EMG driven needle procedure is more expensive than just standard shots but it pinpoints the shot accurately. When you consider each vial is $365 or more, I prefer the accuracy for the most bang for my buck. When the warble sound and the monitor show high almost straight up and down movement in rapid sequence, you know you've hit the right spot. Yeah, I can feel it also. Then comes the injection. The muscle is tense already, but now you are trying to push fluid in the space too. I definitely can feel that.

I'm not the squeamish type when it comes to procedures. I watch with great interest even if it's my own body. I have been since I was a child. That's why I chose medical career in the first place. I'm a nerd. I admit it.

All fifteen injections were done this way. Since I couldn't extend my forearm for injections, I rolled on my side and held the arm out so the doctor would have better access. In my mind, the better access the sooner we'd be done. The sooner we were done, the sooner I'd have relief in a week or two.

Not me but close

Now, I'm not flat chested so when it comes to pectoral muscles I have to hold my girl twins in check and out of the way so that the doctor can reach the muscle. The Hooter girls have nothing on me even after a breast reduction. I used to say my twins were identical twins until a second partial mastectomy because of cancer. So now they are fraternal twins. No, I did not have reconstructive surgery after the last time either. One double surgery was enough for me. A rolled up sock works wonders to fill in the gap in a bra under clothes.

Which poses an interesting question...you shouldn't take a blood pressure on the stroke affected side and you shouldn't take a blood pressure on the side with a mastectomy, but I only have two arms. Most nurses are dumbfounded when I tell them. Only one yesterday was quick to say take it in the leg. Ding, ding, ding...we have a winner finally. I've only been asking nurses since I had my stroke in May 2012! Honestly most cannot be bothered. I can understand this.

So I'm waiting and expecting the shots I had yesterday to take effect.

Taboos

Is nothing sacred? Yep a lot of things are like God and the Ten Commandments. But in blogging there are a lot of taboo subjects. I realize this and choose to shed light on certain subjects like incontinence.

I rarely talk about sex because I've been voluntarily celibate for the past eight years. I prefer to have sex with a partner. My husband has been too ill to participate. It's not that I don't have permission to stray. It's not like I haven't had the opportunity, I have. My husband gave me permission to seek other companionship in that area, but it is a choice to remain faithful to my beloved. Being a relative healthy female, I do miss it. Some say it's like riding a bike so I'm not worried.

The thing about taboos is that people do talk about the issues among themselves or suffer in silence. I tend to lay it all out on the table and speak my mind. Sure there is plenty of information from medical sources on the web about subjects that are taboo, but very little "my story" type reading. Let's face it, you can read all the medical context you want but there is nothing like reading a first hand account of something similar that you are going through. You can honestly say that I'm not alone. 840K speaks very loudly (most since I've had my stroke).

Recently I heard from a reader that has had urinary incontinence issues since she was six years old and numerous surgeries to correct the issues. It warms my heart that I touched someone going through what I am and can relate to what I am saying. The reasons behind it are different, but the problem is the same. It proves to me there is an audience for my taboo topics. So many people suffer from the " Oops I can't say that online" syndrome. I don't suffer from it at all. Nothing is taboo with me but I try to keep my blog PG-13.

I believe that if you are experiencing something- you should talk about it. Not just the bad stuff or good stuff. I admittedly try to keep the poor-pitiful-me to a minimum and tell it like it is. Sometimes I rant and rage about injustices, but I do try to keep it light hearted.  Nobody really wants to read complaint after complaint or whining. Although I do that too occasionally. 

I've been bashed because I view my stroke as a learning experience and MY view of things.  But I honestly do. Since my stroke, I've developed more cyber friends and viewers online than I ever did when this was just a blog for writers or an author's blog. Yes this blog is still for writers because that is what I'm attempting to get back to. But with my second stroke the cognitive deficit is more marked.

What I regained months after my initial stroke has put me at -25 now. So I'm struggling here just to blog. Even writing this blog is hard to come up with words. Obvious with my continued absence. It now takes me three days to put together one blog between the (xxx) where I can't find the word or correcting all the red squiggly lines. Talk about a major setback for an author! But at least I am trying.

I appreciate all comments and emails but if you feel so strongly against the subject matter... stop reading. I usually preface my blogs in the first couple sentences. Nobody is twisting your arm to keep reading. I lead by example and follow like minded people. Even if the following drops right off a cliff. Well maybe not to that extreme. I imagine you do the same. My goal is not to alienate people but to say, "Hey, you're not alone."

I may never get back to being the writer I once was, but it's a goal I'm striving for. Thanks for sticking with me for the journey.

Nothing is impossible with determination.

St. Simons Made the List!

I was browsing yahoo news snippets this morning, and saw a familiar picture. The article was titled "America's Most Romantic Towns."

Sure enough when I opened it, my very own St. Simons Island was list #1 of 10! As if there was any doubt judging from the number of marriages I've officiated at before my stroke.

                      "No. 1 ST. SIMONS, GA • America’s top town for romance strikes the right balance between seclusion and accessibility. Located on one of Georgia’s Golden Isles, this southern-style beach town has both white sands and live oaks, and was a hit with readers in romance-friendly categories such as picnicking and charming cafés. You can rent bicycles, browse antique shops, and check out another undeniable marker of romantic destinations: the local lighthouse. Stay at the 34-room St. Simon’s Inn, and you’ll get a clear view of the 19th-century landmark. goldenisles.com (Photo by James Schwabel / Alamy)"

 

For me, coming in second was Driftwood Beach on Jekyll Island listed as #10 globally as most romantic beaches.

 

In other news- My purse is $1,300 is lighter today than it was yesterday. (My portion after insurance) It takes 5 months to save that much money on a fixed income. I had another series of Botox injections. 300 CCs worth in my lower and upper arm plus my pectoral muscle. Eighteen EMG guided needles probing (digging) for the exact spot. It should alleviate some of the spasticity in the arm relaxing the muscles some and breathing will become easier again. It only took two hours to accomplish that feat. Post stroke life is such a joy! 

 

Oh and I forgot to mention the private sitter fee for my hubby that is paid out of pocket. Yesterday was expensive but worth it! Fifteen dollars an hour times three hours. YOU HEAR THAT SOCIAL SECURITY? And, they say I should work outside the home instead of caring for my hubby. That savings isn't considered income though because it isn't taxable or deductible. Forgive me for ranting without warning.

The good news is that I've met my yearly out of pocket limit with this and a carotid artery scan I had done in January so after this the insurance will cover 100% for the rest of the year. It's really quite sad to reach your out of pocket expense for the year in February, but that's life post stroke and having a bad heart.

Another piece of news- My DH is on the mends of sorts. No he's still dying in slow increments, but he seems to have rallied a bit. It may be his body adjusting to the added morphine, but he's more lucid than he was. He is sleeping only about 18 hours a day which is a blessing to me. We are able to spend a couple more hours of together time. Every second is a blessing. Although he has more episodes of severe difficulty breathing, with that taken into consideration, he is smiling and laughing more.

Just thought you'd like to know.

"I Understand," He Said

Confession time. They say confession is good for the soul. I know this is true. Being a minister, I've said it often enough.

This weekend from Friday to Sunday was spent in a teary eyed haze. Part of the reason was the PBA I suffer since my stroke. Part of it was the circumstance I find myself in. Another part was me being on the pity pot and just so blasted angry, frustrated, and tired. My thoughts just wouldn't stop and to be truthful I wouldn't let them. But that's not my confession. That just is.

Thursday my husband's electric wheel chair decided to quit. It sounded like something had

wrapped itself around the wheel and prevented it from moving. I thought if I could tilt it I could look under the thing and maybe fix it. While I could push it and rock it, there was no way to control the fall with only one hand. Remember forethought before action. So I tried to think of another way to do it and failed. I eventually gave up and called the company I bought it from.

They picked it up and took it back to their shop. Friday morning they called with the bad news. One of the motors had fried. Because we bought it used it has no warranty. It is going to cost as much as we paid for the thing to fix this one motor and it has two. Knowing Murphy's Law so well, I figured as soon as we replace this one motor the other one will go out too. Not to mention we didn't have the funds to replace the first one.

So all day Saturday, I searched for ways to come up with funds for the replacement motor. It's amazing how many family members and friends you have when you have money and how fast they fade into the woodwork when you don't. It's doubly hard when you've spent your life in service to others like I have.

Now that I've set the background for the confession I'll confess.

I started calling all my regular bills like telephone and cable because those are fat bills.  They almost fit in the luxury category. Granted having 300+ channels on televisions we don't watch is a luxury. Having internet service is a need based luxury. I do business via the internet. Stay in contact with family, friends, and fans via the internet so it becomes a cost of doing business (and pleasure) for both my husband and myself. My land line telephone isn't even being used because I can't get to it fast enough since my stroke. It was kept in place because of the emergency life support services.

I'd dealt with the cable company to get bare bones television while maintaining my internet. It saved us over $100 a month.

Now I was tangling with the telephone company. I first went to their internet live chat helper with one simple question, "Can I still keep my cell phone if I delete my land line?" The online chat helper was geared to U-verse questions only so no help there. I called their 888 number. Put on hold for a live person for ten minutes. Listened to crappy music and a recording to how important my call was. A live person answered finally. She couldn't help me so she transferred me to another department.

Another ten minutes of listening to music and apologies. A real voice came on the line. I asked my question. He asked me if I was on the U-verse plan. Uh no I wasn't. He had to transfer me again.

Meanwhile my cell phone is heating up my ear. I place it on my desk and start bobbing my head from side to side in the "Jeopardy" theme song. I'm making snide comments back to the computerized voice telling me "Thank you for waiting..." Heck I have nothing better to do today except for listening to your canned music and playing phone tag because YOU can't get your act together.

Finally a male cheery voice came on the line interrupting the recorded one. When I told him I needed to cut the fat off my bill he innocently said, "I understand. We are all going through some rough times right now."
I lost it totally to this man in Minnesota. "Oh you mean you had a stroke and lost the function on one side of your body, AND you are caring for a terminally ill spouse too? Small world, ain't it?"
He started stammering and tripping all over the place.

Part of me was self satisfied and another part of me cringed in guilt. My finances or circumstances were not his fault. But so many people have this canned speech prepared without thinking just what they are saying. I was tired on hearing it.

How many times has this situation come up with you? Over on Amy Sissler's blog, we had a discussion about expressions of sympathy that are construed as empathy. Or you are talking about the paralysis in your arm and a friend compares it to when she broke her arm and wore a cast for two months. So many well meaning friends and strangers saying things that they think are supportive but really are just a slap in our face. Not that I don't appreciate the gesture, I do. But understand it is sometimes better to give just a hug and a smile. Granted this poor guy couldn't do either so he said the first thing that popped into his head or something he was trained to say.

At the end...Yes I can have my cell phone and close out my land line account. Better yet for the next 30 days all my land line calls would be directed to my cell phone. For the ultimate, I'm now only $150 away from getting my husband's chair fixed. I think if I had to do it over again, I wouldn't have lashed out at this young man.

That's the truth.

Talking Trash

Oh, get your minds outta da gutter!


Barb Polan and I have been emailing back and forth about garbage and composting. For us it's difficult if not impossible to get the garbage from the house to the rolling bins, and out to the road for pick up. Okay, it can be done in a thousand and one baby steps along the way. A week's worth of garbage takes a week to get it to the road.

It's one of those things most of us really don't talk about. Another adaptability failure issue but we keep trying to adapt to succeed. It's just that success in this case isn't without some major issues. I wonder how Rebecca does it? Hey Rebecca! Chime in.

I guess I could put all my noncompostable garbage in those little plastic grocery bags and carry them to my dumpster one at a time. But that still leaves rolling the dumpster to the road. I don't know about your front yard, but mine is uneven with plenty of pine tree and oak roots to trip me up with a rolling slant. It isn't a smooth paved surface like the picture. I wish!

For anyone that has read my blog for over a year, you know I'm a survivalist, planning on living off-the-grid, and become self sufficient. I even wrote one book in a possible series of how tos.

Funny things happen to well-made plans. I had a stroke leaving me partially paralyzed on my dominant side. I'm having to relearn and adapt every thing I know how to do. I still compost, and as of last year I started gardening again. I'm an avid recycler too.

Bet you want to know how I get the compostables to the composters, don't you. I mean I'm one handed and walk with a cane so no free hand to push and pull with, right?

 

 

      Plus

 

One small bungee cord around the handle of the wagon and another around my waist. Okay, it's more like two bungee cords around my waist. I'll walk where I want to go pulling the wagon behind me.  I actually use cardboard to make the sides higher. But I keep in mind the weight I am trying to pull. It varies to a max of ten pounds plus the weight of the wagon.  Eventually I may Jerry-rig a harness for the German Shepherds to do the pulling, but they are still pups yet.

Originally my compost bins looked like this...
It doesn't take a rocket scientist to figure out this system would be almost impossible for me to turn properly let alone get the compost out without hurting myself post stroke.

So I graduated to this...I can just walk by it a couple times a day and give it a spin.  Yes I built it myself from plans on the internet. The guy in Home Depot was nice enough to cut all my lumber and the pipe works for me. I used screws, and nuts and bolts to put it together. What would have been a couple hour project in the old days, took me two weeks to build it. I put the handle on the side for when it gets too full and the barrels get heavy. 

No, these are not mine. Just some pics I pulled off off Google. But you get the idea. My set up is similar. I built two double compost barrel set ups in about two months. Between the chickens, Guinea pig and rabbits added to my home organic waste I could have probably gotten away with just one set up except for the amount of yard trash like leaves and cut grass.

I mentioned that I'm going to try square foot gardening this year. Since I set up my raised, really raised beds last year it made sense to me. I started to set seeds four weeks ago but the Arctic Blast hit and then hit us again giving us below freezing temperatures so I'm glad I didn't. 

I bought some cedar fence planks to enclose my bag garden beds from last year. I still plan

Yes that's old Mel himself.

on using my milk crates to raise them. I figure four 4x4 gardening plots would be a good start. One 4x4 set on the ground for corn and later for a bunny/chicken friendly grass/clover/hay mix for their grazing pleasure.

Nod to Mel, creator of the Square Foot Gardening method. My exception is that my frames will be 18" deep where his are only 6".  I believe in deep rooting my plants. Also I've been thinking of potatoes sweet and Yukons in 2x2 boxes that build up. It all depends on what I can get finished with in time. While "normal" people may accomplish the building time in a matter of hours, for me it takes days. But that's okay because I'm doing it.

So I plan again for the upcoming Spring and gardening. Life is all about changes and adjustments. It's all in how you view it. Stuff will always happen to change your circumstances, but living is what you do with them. You can sit back and gripe or adapt to live through it making the best outcome for your circumstances.

Nothing is impossible with determination.