Redefining Disability Project #11

http://rosebfischer.com/2014/07/01/redefining-disability-an-interactive-blogging-project/

 

 

Yep, it's Tuesday again. Today's question is...

Does disability affect you in other ways?


Unfortunately, my stroke affects me at all times and in all ways even when I sleep. When it was just replacement joints or my diabetes, it was only when I moved or ate that caution was used. There was nothing wrong with my brain so I enhanced those activities when my body wouldn't work right. So for the most part, I thought and behaved normal. Yes, there were days that were worse than others, but it balanced out.

With my stroke my brain was the problem and nothing balanced out. I couldn't find words to express myself. I'd loose either words or my train of thought constantly. 

The PBA due to my stroke, has me crying, laughing, or ranting angrily at the drop of a hat. Let me tell you. The hat can drop several times a day. It can take as long as thirty minutes to regain control over my emotions with each episode.

My brain sends the wrong signals to my muscles and my leg and arm will bounce around all over the place (clonus). My brain will send another set of impulses and the muscles will fire into clenching (spasticity). Even sometimes, it won't send any signal at all (paralysis). I rarely have control. Even right now my leg is bouncing under my desk (clonus) while I type. Quick reposition and grabbing a trigger point and it stops.

In my case, yep!

The joy of eating has flown out the window with my stroke also. The whole right side of my face and halfway down my throat is numb. You know that feeling after you've been shot full of Novacaine and it's wearing off by the dentist? That cheek out to there and if you touch your face it feels like it's through a towel. Yep, that's the one. That's what my face feels like. Yes, the jaw works just fine or at least seems to being firmly attached to the left side.

Have you ever bitten the inside of your mouth while chewing? Gotten food stuck between your teeth and bottom gum? Have you ever taken too big of a bite and tried to swallow it? Because I don't feel my cheek or my gum on the right side, I'll bite the inside of my cheek about every other meal and once you do, it keeps on happening! Food will pocket in my lower right cheek by the gum line. While I have almost recovered all my tongue movement, I have to manually pushing the food up where I can swallow it from my finger on the outside of my mouth. Rice is the worse! Every bite I swallow is like to big of a bite because my throat muscles on one side are weaker than the other. I have to double swallow for every bite, but even so I'll have esophageal or laryngeal spasms. What's the fun in that?

These are just some of how my strokes have impacted my daily life each and every day. Living each day to the fullest is a challenge. Do I ever wish my stroke had killed me...sometimes. Hey, I'm being honest here. But it didn't, so I live each day to the fullest. I try to minimize the impact by trying to adapt so it is minimal. I make meal times an event. It looks good. It smells good. It tastes good on the taste buds. All the rest still happens, but I had a pleasurable experience before it happened. It balances.

I may not have control over the factors in my life but, I have a choice of how I react to them. I can either stew in misery or get on with my life. I choose getting on with my life.
 

Sunday Stroke Survival~I Got One, But Not the Other

Today's post is on therapists. Actually, a specialty with a field of therapy...it's the physiotherapist. What I didn't know, before I asked, is there are two different types. I just assumed that you went the extra mile after your masters + got your doctorate= physiotherapist.  Well, you know what they say about assume. The short of it is I was right and wrong.

Carol (not her real name) does the women's health, evaluates all incoming P.T. clients, and a host of other functions. I asked her if she had her doctorate. She said, "Yes, but not the PhD."

This confused me because when I entered the doctorate program upon graduating, I became known as Dr. Murphey. After my ordination, I became Reverend or Dr Murphey. I thought it was the same for all degrees...NOPE.

At my puzzled look, Carol explained that there were two tracts of schooling for physical therapy. One is sort of like a vocational versus academic versions of PhDs. She chose the vocational path. She does all the hands-on, practical stuff, while the doctor type can write prescriptions and stuff like that.

That made sense to me. It's a question of boards and licensing. It's a personal decision dependent on where your heart lies and what you want to do. Like I could have remained Dr. Murphey sans ordination, but chose to go through ordination. So I've got a physiotherapist with a doctorate, but not a doctor of physiotherapy.

Among the stroke tribe and other survivors not in the initial tribe yet, there is a hot button discussions about physiotherapy doctors being better for stroke survivors than neurologists. Personally, I can only read about it because I don't have the option of the experience. I read the pros and cons of everything especially if I don't know enough to form my own opinion. It's just a smart thing to do.

What really got me thinking about this was a discussion my OT and I had on Christmas Eve. We were discussing alternate treatments for spasticity since I had problems with my last round of injections. I tend to put the people who work for me on the spot with questions and demanding answers. That being said, I'd rather be told, "I don't know but I can check, or I don't know" than being sidestepped, or have smoke blown up the wazoo, or lied to.

First, let me say that I have an excellent rapport with my therapist. It is born out of mutual respect and honest caring. She actually researched this while on vacation...a cruise no less.

She told me about dry needling. I'd never heard about it before. Anything she doesn't understand about how and why a technique works, she calls voodoo therapy and this was definitely a voodoo therapy to her. It was just the fact that there wasn't too much information or studies involving it and it's a relatively new procedure. She gave me the basic run down. She said preliminary studies have shown both positive and negative results. On the positive side, significant reduction if not a total cessation of spastic muscles. On the negative, it doesn't work or increases the spasticity and pain due to spasticity. Then she told me that my old speech therapist's husband is a month shy of being certified in the technique.

I did some preliminary  research on it and set about finding a doctor within my PPO to perform this service, a physiotherapist or chiropractor. I'm that desperate to stop this insanity with my muscles. I was insane enough to voluntarily have poison injected into my body every four months (Botox). What's one more step towards the cliff edge? Besides, I'm still doing research so I'm going into it with full knowledge, or full as I can be. The hitch is that it might be a pay-out-of-pocket thing. If that's the case, this treatment will have to go on my want/need list until I have money to pay for it. I won't know for sure until February. I'll keep you posted.

Oh, my OT changed her opinion of my paralysis and admits I am paralyzed. She told me that the upper arm fires but the spasticity won't allow movement therefore it is not paralyzed, but my low forearm, wrist and hand are paralyzed because even if the spasticity was nonexistence it does not fire. So, we were both right. She's learned a lot in the past six months of dealing with me.

Nothing is impossible with determination.

Friday Fun~Some Interesting Videos

I hope y'all had a wonderful time yesterday. You probably talked too much, ate too much, and I hope were surrounded by love.

I ran across some interesting videos this week on YouTube (yeah, yeah, I spend too much time on YouTube) having to do with disabilities. They say a picture is worth a thousand words. If so, these are worth millions of words. I always say disability is a perception problem. In some ways we are more creative, determined, and more adaptable than our able bodied counter parts. The able bodied are hampered from reaching their full potential.

(All of these have YouTube standard licensing)

The first one I saw was at Rose B. Fischer's blog. It's called the Social Model of Disability by Geoff Adams- Spink. Just think if the shoe was one the other foot as this animation demonstrates so well.

The next one is also self explanatory about inclusion for disabled people. The last one is the perfect example of why I can't read for pleasure since my second stroke..on dyslexia. One of the best explanation videos I've seen to date.

So we're all in this together. Stand up and be heard.

Thursday's Tumbles and Stumbles ~ Adventures in Christmas Baking

Today is Christmas and I pray that each of you have a day full of love and companionship.

I decided that this year I would change things up and challenge myself. No, I didn't offer to do Christmas at my house. I'm still not ready or comfortable enough in my skill levels to take the challenge of 75 people in my home for dinner again yet.

Instead of my usual cake pops, Rudolf and Santas, I decided to bake an 8" cheesecake. Actually two of them. One went to a neighbor who elfed me this year. More on that in a bit.

This was a challenge/ adventure that almost undid me. My cheesecake takes about eight hours to make normally, but this was a twenty-four hour for each one. It's a good thing I started on Saturday) I made Double Chocolate and Peppermint Cheesecakes.

The first challenge was making chocolate refrigerator cookies for the solid base of the

cheesecake. Mixing the cookie dough went fine thanks to the stand mixer daughter #2 got me last Christmas. But rolling it into tube and then in plastic wrap was a nightmare. After two hours of playing with it, I finally got them into the freezer to chill. Yeah, they are refrigerator cookies when you have the time to let them chill in the Fridgidaire overnight, but I wanted to bake these off in a few hours. Once chilled, I sliced cookies off the rolls and placed them on a couple large baking pans. I think this is the first tie I used my big oven this year. They turned out perfect. Transferring to cookies from the pan to e rack to cool was another matter. They stuck to the parchment paper. You wouldn't think that any cookie made with THREE pounds of real butter would stick to anything, but they did. Eventually, they all cooled, and then I crumbled them in my mini food processor.

Then came the decorations for the cheesecake. Yes, I suppose  I could have left it plain, but I wanted it Christmasy. So I bought some Bob's Candy Canes to tie in with the peppermint extract I'd be using in the cheesecake part of this dessert.

I'd figured that a couple of raps on the table edge and they'd break into pieces and tearing their wrapper like any other candy cane. Wrong! This wrapper was heavy duty and it stretched. I had to enlist my hubby to unwrap the darn things and he had to use scissors! I'm just glad I didn't buy this brand for my littler grandchildren. Finally after three hours I had naked candy cane pieces. This decorated sides of the cheesecakes. On top of the chocolate ganache covering the cheesecake, I'd planned to pipe frosting poinsettias. I looked all over town for red royal icing to no avail. They were sold out. I could make  royal icing, but coloring it the deep red color I needed would be a problem. Ninety-nine percent of red food coloring has a metallic after taste when used in large amounts. I settled for more crushed candy canes in white chocolate (peppermint bark).

Making the cheesecake portion went along with little difficulty except getting the cream cheese out of its foil liner. Another, 'teeth don't fail me now' moment. Cracking the eggs one by one one-handed was a task I learned too many years ago as a chef. The mixer blended it up beautifully. The whipping cream added volume to make it extra airy.

So it's about 10 PM on Monday when this first cheesecake makes its way into the oven for an hour and ten minutes cook time. This was followed by a the hour cool down in the oven, and release from the springform pan collar to begin its six-hour chill out flavor meld time.

Tuesday, the second one went way faster because I already had the crust prepped. It went into the oven an was cooking while the other one was chilling out. While the second one was doing its major chill out, I decorated the first one.

Mission accomplished! One cheesecake for Christmas dinner with my family at my sister's house and one for my neighbor.

Now about my neighbor. She and her husband bought the house diagonally from mine. At the time she was raising her 4th grandchild. My youngest daughter  used to babysit him for her. She is now raising her fifth out of seven grandchildren. We got our precious Little Bit from her and she's a great neighbor.

December 1st, a Christmas wreath appeared on our front door. I had no idea who put it there but I had my suspicions. The next day, our mailbox was decorated. Then every other day gift bag were left on my door step. An angel with chocolates, a reindeer with peanut brittle, an LED snowman, and a small chest with chocolate chip cookies magically appeared. But I caught one evening as she was dropping off half a dozen cupcakes.

Well Wednesday was my turn to surprise her. I couldn't leave it on her doorstep because it had to be refrigerated. I placed one of the cheesecakes on the plate that had the cupcakes on it. I never return a empty plate that had a kindness on it to begin with. I reciprocate the kindness. I thanked her profusely for the joy she had brought my hubby and I, and handed her the cheesecake. I told her, "God bless you and yours for keeping the Christmas spirit alive. Merry Christmas."

Her smile made all the hard work of this challenging effort worth every minute.

Merry Christmas, y'all and I'll be back soon.

Redefining Disability Project ~ Post #10

Happy Tuesday everyone. Time again to answer another question from...

http://rosebfischer.com/2014/07/01/redefining-disability-an-interactive-blogging-project/

Are your leisure activities or hobbies affected by disability?

This is a no brainer for me, or easy to answer with my damaged brain. Heck yes! All my leisure activities are affected by my strokes.

I used to love to read and even some said I had a voracious appetite for the printed word. Reading for pleasure has gone out the window for the time being. When every letter has to be deciphered, each character has to be refreshed in my mind who they are, and having to reread every line about half a dozen times takes all the joy and relaxation out of reading for me. It is now a chore.

Writing was a way to earn money and telling stories. I absolutely loved writing stories as in novels and nonfiction. Word crafting was a joy. Not anymore! It breaks my heart to see all the red and green squiggly lines under what I'm trying to say. The grammar and spelling is worse than my young grandchildren. My writing is full of XXX(description of word I'm looking for and can't find).  Say the XXX I'm searching for is "banana." In the parentheses would be (yellow, fruit, slip peel, monkeys eat it). I can tell you all about the word except what the word is. As you can imagine, this gets very frustrating. I've got enough frustration in my life right now.

My illustrating has also fallen by the side of the road being right handed and having my tight hand nonfunctioning. My left hand had too many injuries in the past to do fine detail work.

In homesteading, I loved plowing my field (1/4 acre), mixing the compost, planting, weeding, harvesting and preserving.  I grew enough to feed my entire family and their families. Now I square foot garden in elevated raised beds. It's not the same.

I raised, butchered, and processed chickens and rabbits for the same bunch too. I raised Angora rabbits for their wool and spun it into yarn or swapped it for sheep's wool to spin. That brings me to another leisure activity that has gone by the wayside...

Needlework has been almost impossible to enjoy as I once did. I used to sit by my wood stove in the winter and do needlework. What kind? All kinds, knitting, crocheting, cross stitch, embroidery, and quilting. While I have learned to knit on a loom one handed, or hold a larger knitting needle under my nonfuncting right arm, it's not the same. I recently learned how to spin on my spinning wheel one handed. Wool, inch by inch is being made into yarn.  Thanks Linda!

You may look at these activities and think of it more like work, but not me. Sitting at the spinning wheel or sitting by the fire knitting melted stress away. Watching things grow from seed, caring for it, and then enjoying the fruits of my labor, to me there's nothing finer. Writing and illustrating, were a way to escape what I was going through into another world.

Has my disability affected my leisure activities? Heck yeah, it has, but in time I will learn a new way to get it back again. I am gardening, spinning and knitting again. I'm blogging instead of writing. I still try to relearn or learn something new every day. Do I miss my old life, who wouldn't? But new adventures await.

Sunday Stroke Survival ~ Wake Up and Smell the Coffee!

Watch out for obstacles.
Watch out for cars.
Watch your p's and q's.
Wake up and smell the coffee!

I could go on forever with these, but I'll stop with these.

What am I getting at? Warnings? No, these are all things you should be mindful of. How many times did your mother utter the second one? Every time you went outside when you were younger. When did she stop? When she felt that you would do it automatically or became a habit to do so.

After a stroke, there are so many things to be mindful of. How you rise from a chair. How you look at you feet to ensure proper placement before you set off walking. While you are walking, all the rough or uneven patches where you place your step. Why do you do this? Doh! So you don't end up falling or tripping. It is more easier to be mindful of things that can make you fall and get around it than picking yourself up off the ground.

If I had to make a list of everything I had to watch out for, I'd never get anything done. But then again, it's been almost three years since my stroke. Most have become habit and I do it automatically. But in the beginning that was not the case.

I mentioned once a long time ago, how I take a step in walking with one leg cursed with high tone and spasticity. I lost the movement of my hamstring so it was realizing to my new body mechanics worked. I found that if I squeezed my butt cheeks together I could engage my hamstring to bend my knee. Even now, I'll squeeze my right cheek before I lift my leg to bend my knee except I no longer think of the action before I do it. So I'm actually walking via my gluteal muscle rather than my thigh or calf muscles. Well, that's not entirely true, but I have to use my gluteal muscle to get the other muscles to work. This is because my brain still fires on all cylinders to my butt but not necessarily to my thigh and calf without setting into Clonus (tremor pattern of misfiring neurons).

So when does mindful behavior move from something you have to think through step by step? This takes time and practice. How long depends on you as with everything in your recovery process does. More than likely, one day it will dawn on you that you aren't having to be mindful about your new body mechanics. You may even greet it with some surprise when you realize it. I know I did.

Mindfulness is being cognitive of the present. Everything around you and in you. This can be from a safety standpoint to a spiritual one, and everything in between. Do I ever drift off to la-la land and just forget being mindful? Yep. Those are the times when I do or almost fall. Something will jerk me back into mindful mode with a quickness or I'll have to pay the consequences of drifting off to la-la land.

So for today, be mindful of you surroundings and you might be surprised at what you see. Maybe it is someone you see in a different light. Maybe it's a Cardinal singing a song outside. Maybe it's just listening to your breathing and heartbeat. The thing about mindfulness is that it can be whatever you want it to be. It's just your awareness. So what do you see?

Nothing is impossible with determination.

Thursday's Tumbles and Stumbles

Well after a week of numerous tests and 'ologisitis to find what was going on with me, I finally have the results. It's gonna be filed under "Murphy's Law" or "It could only happen to you."

It's not what I thought, but I was partially right in that I blamed my Botox, but it turned out to be a list of things going on at the same time.

Macrobid has a side effect of muscle spasms. I was on it for my urinary track infection. The Macrobid side effect was fighting the Botox and I got caught in the middle. Thus the increased spasticity. I can no longer take Macrobid so that leaves sulfur drugs. The neurologist increased my Zanaflex to try and get control of the spasms. It has worked although my heart rate has dropped into the high 50s and low 60s which my cardiologist is wary of.

I was also going through a Fibromyalia flare. This was confirmed by the rheumatologist which accounts for the spike in pain level. He added Lyrica to my Cymbalta to combat this.

The total loss of urinary countenance was caused by a failure of my bladder sling. It failed by ripping loose from the right pelvic ligament it was attached to. This was confirmed by  my urologist. The ligament will heal on it's own. It is a minor tear, but will cause the hip to be "a tad" (his words not mine) more painful. The failure was most likely brought on by the urinary track infection putting too much strain on it because I've had so many in the past six years.

I'm left with a couple of options regarding the urinary incontinence 1) go back into diapers full time (expensive!), 2) catheter (least favored by all), and 3) having another sling installed (the best option).  With the best option, my beloved will have to go into respite care at the nursing home for a couple of days while I'm in the hospital. My urologist told me with my complicated medical history, I would have to be admitted.

 My hubby will hate it. Heck, even I hate the idea. He has become so dependent on me, I can see his stress level mounting off the charts with this. I may wait until after Christmas for this surgery. I'll need the time to lay in some quick fix groceries and chocolate for him. Everything is better with chocolate, right? I'm banking on a huge sale of after Christmas chocolates to carry him over to Valentine's Day. It's crazy to live your life around after the holiday candy sales because after Mother's Day there isn't another candy holiday until Halloween but we do what we can do.

Okay, I think that brings y'all up to speed with me. The hubby has a touch of Bronchitis, so I'll be watching him closer in case he goes into pneumonia. Me? Worried? Nah! Been here too many times before.

Redefining Disability Project~ Post #9

It's Tuesday again. Time for the Redefining Disability Project. There are some questions I'm going to skip because they don't apply to a sexagenarian (like school activity questions). It's all ancient history anyhow. I haven't been to school k-12 in decades even as a teacher and college graduations were at least a decade ago. Who really wants to hear rantings of an elder woman about how things were? What am I talking about??!! My readers read everything I write about what happened, but still school questions are out.

 

Is your family life affected by disability?

You better believe it on multiple fronts. I don't know if dying or having a terminal disease counts as disability, but my husband has been disabled since 2003. As his condition worsened, it been up to the gfmily to take up the slack for what he isn't/can't be doing any more.

After multiple spinal surgeries, I could no longer tie my own tennis shoes. Was I ever thankful I'd taught my older girls how to do it before my last two back surgeries. Now with my stroke, I'm depending of aides, family, and volunteers to do the things I can't like changing a light bulb or getting cobwebs near the ceiling. Since my stroke, I can't look up without severe vertigo to the point of falling. I can't operate a chainsaw or weed whacker with only one useable hand and arm, so I'm stuck depending on others. These are just a few instances of how our disabilities impact our life.

How long it takes to cook a meal even with a microwave is twice as long because of preparing and serving with one hand. I actually don't fry chicken any more for just the two of us because of the mess, but doesn't this plate of food look yummy? I buy it from Kentucky Fried Chicken or the grocery store deli because one store bought chicken breast will feed both of us.

Turning on a dime is now a four to six step process in walking, and in driving, it takes a steering knob on the wheel. The logistics of doing anything is twice if not quadruple more complicated. Putting the keys in the ignition means leaning around the steering wheel to do it because I can't use my right arm. The same thing goes for the cruise control, gear shifter, and wipers. They are all on the right. It also means letting go of the steering wheel. Totally not a safe thing to do. My other choice, letting someone else drive. I had a chauffeur for the first ten months after my stroke, my daughter. Then she got transferred to Savannah, 80 miles away. In fact, my closest family is 45 miles away now so I had to learn to do and adapt.

There's always room for adaption in your life, but you have to be open to it. I did away with my regular house broom and bought a push one like you use in the garage. It's way easier and faster sweeping the floors. I bought one of those nifty fan brushes to clean my ceiling fans with. Granted I look like a child trying to crack open a pinata when I do it, but the point is, I DO IT. It may not be a perfect cleaning of the blades, but they are a sight better than they were. And yes, I will have to wash my hair afterwards for those dust bunnies too.

So why can't I wait for others to do it for me? Well, I could just sit by and watch those dust bunnies turn into OVERWEIGHT rabbits, but my allergy to dust kicks in. Waiting causes me more problems in the long run and more money for a doctor and more drugs. Now light bulbs, I usually wait. I have lamps and four bulbs in the ceiling lights so I'm not totally in the dark. Not all those four bulbs will burn out at the same time.

For yard work, I'm at the mercy of other people's schedules. I actually do miss the yard work, but my grandsons do it most of the time. Now chain sawing bushes or trees takes their daddy to do, not that these teenage boys couldn't handle it. It's a me issue. I've learned that son-in-laws come and go, but my grandchildren are mine forever. It makes a difference to me.

Granted we Murpheys are a closed knit family and extended family group. I could call any one of my sister's spouses or one of my brothers to do things for me too. I just keep hating to ask them when they are dealing with other family issues. Remember, my first planned homestead land was 20 acres to feed and house everyone. My kin would drop everything to help and in that respect I'm luckier than most. But somehow, I feel guilty about asking them when I know they do what they can, when they can. That is also a me problem, but if I get desperate enough I will.

So how does disability affect families? In every way or plane of existence and on so many levels. From the sister that barely talks to you to the children who hug your neck every time they see you. In family life, what affects one,affects them all.