Tuesday, March 31, 2015

Redefining Disabilty Project: Post #22

Time to answer another question.

  What would you tell someone who has recently been diagnosed with your disabilities or disabilities that you are familiar with?

Finally, an easy question for me. I'm actually familiar with quite a few.
  1. Never give up hope.
  2. Keep fighting and never give up.
  3. Take as much time as YOU need.
  4. Make your own list of all successes and refer to it often.
The reasons...
1.  Hope is easy to give up but hard to get. Yes initially hope takes a hard hit when faced with insurmountable odds. It's an uphill battle. Isn't life always? It's harder to maintain hope when you battle long enough, but once it's gone, it's gone. It is far easier to keep it simmering on the back burner. That way, all you have to do is turn up the heat (successes) to have it to a rolling boil again.

2.  Keep fighting and never give up. Remember Thomas Edison tried 700 to 10,000 (depending on the source) times to invent the light bulb before actually inventing it. If survival and recovery mean anything at all to you, keep
battling uphill. Once you stop, it's hard to get your momentum back.

I want this shirt from Zazzle.com
3.  Take as much time as YOU need to make it happen. You'll hear all sorts of helpful (harmful) stories and statistics for and against you based on other people's response. "My Aunt Gertie had the same thing and she was up and around in a month."

This is happening to YOU and YOUR body. Everybody and every condition is unique. You may be like me or a thousand others that do not fit in a neat, little category box. Even if you recover faster or slower than me, so what! I'm getting there and so will you. I'm doing it in MY time. So long as you follow #1 and #2 that is.

4.  Make a list of all successes and refer to it often. Keep a diary of firsts so you will remember if you have to. For me, it's this blog. It is so easy to forget how far you've come over time when the "poor pitiful mes" strike. Yes, I still have them and so will you. Each success is a milestone and something to be cherished and celebrated. No success is ever too small. Keep reminding yourself of how far you've come and do it often. There is nothing so revitalizing as looking back down the hill and seeing how far you've come.

That's my take. What's yours?
See you next Tuesday.

Sunday, March 29, 2015

Sunday Stroke Survival: Ataxia. It's That Time Again

"It's that time of year again. Everyone is rushes around getting their taxes done."
"No, Doofus! I said I have ataxia from my stroke."

Geez, some people need to have the wax cleaned outta their ears. But, that's what happens when you use medical terminology on some folks that do not know it. Ataxia is uncoordinated muscle movements caused by a central nervous system disorder like a stroke. You basically you zig when you mean to zag. There are a long list of different types of ataxia depending on what is going on, as well as causes.

Yes, I have ataxia because of my stroke. I have a very ugly gait when walking. My leg on my affected side just won't behave because the nerves in my leg are receiving crossed messages from my brain. The sequence of events involved with taking a step get jumbled between point A (my brain) and point B (All the nerves in my leg). But I do eventually get where I'm going through sheer will and a Quasimodo type step. It's trial and error with most things involving my leg.

A few weeks ago, I told the story about my chiropractor testing the reflex on my affected knee and again about almost kicking my therapist's ear. I have absolutely no control over my leg from the knee down. I didn't want to see my lower leg bouncing in every direction like a chicken with its head cut off nor could I stop it either unless I physically grab it and hold it in place. That is what it's like to have ataxia.

Everyone is a control freak in their own lives. We want to have control over anything and everything, but with this there is no controlling it. I just have crossed wires in my brain. Is there hope that it will get better? Of course there is. There's always hope, but it will take time and patience to retrain the brain to send the proper signals.

Oh God! There's that word again! Patience! I often say that my stroke was God's way of teaching me patience. ARGH! I'm a child. I want it yesterday! I want it now! I guess I still haven't learned that lessons too well yet. It's a work in progress still after almost three years. Meditation, Jo. Breathe. Focus. Breathe. There I'm better. No, I'm not making fun of meditation. It really works. Ah well, if nothing else I can control my focus and breathing. As for now, I'll leave my leg ataxia on the back burner. I have more pressing issues.

Nothing is impossible with determination.

Friday, March 27, 2015

Thursday's Tumbles and Stumbles: Dry Needling Finally!

As you may have read a few weeks ago, my dry Needling PT had to return to Scotland because his mother had a bad turn health wise. Well, she passed on to Glory so my appointment was postponed until the 20th. I was in limbo between my Botox injections kicking in and the next scheduled appointment with my therapist. As a result my spasticity returned to where my elbow locked into a 45 degree angle and my foot inverted enough to raise a sore, reddish spot on my foot, it did not rupture. Thank God, but it did make getting about a bit more difficult. The elbow locked with spasticity almost nonstop was a far cry better than it being tight against my chest so the dry needling is working.

Also as a result of my therapist working to release my steel trap (trapezius muscle in my shoulder), it worked so well that I began noticing the tightness of the other side. More like a chronic ache more than pain. My trap on my affected side was still tightening, but not near as much as my unaffected side. Mind you, I'm not complaining. It's just an observation.

The spasticity wasn't even back square one when my therapist came back which is a HUGE blessing. So I'm hopeful that maybe this new therapy for my spasticity will work for the long term. At least that's what I'm praying for. But honestly, just getting full relief of any sort has been a blessing. I've struggled with the pain for far too long. You just can't imagine how liberating being free of pain really is unless you've dealt with chronic, long term pain.

An update on my hubby dearest, Spring has sprung with a little bounce back. He has lost another pound. :(  But in spite of that, he's in good spirits. He even played a game of "Go Fish" with our 13 and 8-year old grandsons last week before he had to rest.

This past Monday, he asked if he could sit outside on the front porch. This is the first time in 18 months that he has actually been outside the house for more than five minutes. It's been in the 70s/low 80s here during the day. So it is Spring. The No-See-ems (gnats) were out in force once the sun set though. Yeah, I'm allergic to those too with the same kinds of reactions as to mosquito bites. So I brought him inside again, but he was relaxed and almost chipper. He was also ready for another nap. The fresh air did him some good because his skin was not the usual gray colored.

He asked if he could go for a drive sometime next week. No, not him driving. I just have to figure out how to get him into the car with his oxygen with only one hand so I'm glad her's given me a week. He hasn't been for a drive since I brought him home from the hospital 18 months ago too. I mean gasoline prices here have dropped from almost $4 a gallon to $2, but everything else has doubled in price since then.

I'm not hopeful at these signs of enjoying life again by him. I fear it's the high before the crash. I've seen this too many times before. But I can revel in it while it lasts.

My BFF, I've got only one, lives in New York. Don't get me wrong. I have friends and a few very close friends, but she is my only best friend for life. We've been friends since 1968. It was about the only time I went a full year in an American school when we met. We became fast friends, pen pals, confidant, and a host of other things despite the distance and years.

We never saw each other again until 1977 and I was pregnant with my oldest daughter. But even so, we were the same fast friends. What our dads called "gaggy girls." It was like no time had past. I spent two days reminiscing with my old
friend. To date we haven't seen each other since, but the letters, phone calls, and emails traverse the country back and forth.

Well, she suffered a stroke last year with no permanent damage. Once again, the emails flew. In January, she had another stroke. She was lucky and unlucky with the second. Lucky because one she survived, and two only minimal sensory damage. She was unlucky because she now suffers with aphasia. While she can actually speak the words aren't coming as easily as before and tend to be disjointed.

Now I wouldn't wish a stroke on my worst enemy let alone on my BFF. But, once again we share in this. She's older than me by a couple of months, but she calls me wiser. Why? I've always been able to break things down so they make sense to her. By me having a stroke first this time, I can help her heal, understand and recover. But in the meantime, I can give her love and support just like I always have. Who knows, maybe we'll see each other again in the future. Until then there's emails and Facebook.

So how has your week been?

Tuesday, March 24, 2015

Redefining Disability Project: Post #21

Welcome all. It's Tuesday again. Time to answer another question.Oh, never mind about that. It's a free post day when I can talk about anything I want. {hehehe] Look out world. Here I come.

Today, I'm going to talk about attitude and perception. As if I don't talk about it enough. I feel a lot of healing takes place with the proper outlook. My momma used to tell me "can't never could."No matter what comes down the pike for me, I always remember that.

What did she mean by that? Simply, if you say you can't, you won't. Half the battle of anything in this life is the trial and error to complete a task. If you say you can't you have lost the battle. I gladly used that sage advice with my own children too. But just like my momma, I always gave them an out to hedge against frustration. I told them to make two honest attempts to try to figure it out on their own before coming to me for help. I wouldn't show them all the way, but tempered my help to where they could figure it out on their own. I always lavished praise on them for their critical thinking. This was probably the best lesson I could have taught them. It was for me.

If you look at anything as a pass or failure, you will probably fail at everything and think of yourself as a complete failure at everything you attempt. Where's you backbone? Where's your resolve? If you fail the first time or even the twentieth time, do you give up? Yep you are a failure.

After my back surgery left me wheelchair bound and the doctors were telling me I'd never walk again unassisted. I could have failed and given up. I could have struggled the rest of my life raising five children from that chair. But no, I had resolve enough to not accept their decision or prognosis and keep trying to walk again unassisted. It took me almost three years. If I had given up, I would have failed in my desire to prove them wrong. You aren't a failure at something until you give up.

Okay, with that being said, there are times when you really can't do. It is a physical impossibility like you are blind and short of an eye transplant or a miracle, you will never see again. So do you sit around feeling sorry for yourself? For the rest of your life? I've known a few folks like that. They don't get pity or reinforcement for their bad attitude from me. And, those (caregivers, loved ones, friends, or strangers) that feed  such an attitude isn't doing that person any favors. That person needs a reality check big time. The good Lord help them if it is me.

After my stroke, I could have laid in bed after I came home from the hospital. My family would have let me for the most part. Even my husband, teetering on death's door would have died trying to do for me. I actually had to fight to regain some of my independence. Now, they offer help, but respect me when I say I can do it. Yes, I might struggle with a task. Yes, it might be faster if they did it with their two functioning hands or legs. But, the point is I CAN do.

If you've read my blog for any length of time, you'll realize that I'm a fighter. I'm also very head strong. I'd rather take the bull by the horn than slip in the piles he leaves behind. Often, it's a stinky, awful mess. I'd rather be proactive in all things. I wasn't always this way, but I'm thankful I am now. I'm much happy in my life.

Happy? You are happy in your life? With all that you have going on? Yep, I am. Not ecstatically happy, but I am content. Things can ALWAYS be worse. I'd rather not go there.

With the right attitude, perception of self, and self worth, I can do anything I want to do within reason. I mean, I won't go sky diving any more, but that was a miniscule part of my life that I really don't want to do again. It's sage wisdom comes with age, why jump out of a perfectly good airplane? I use quantifiers with things I can't do like "yet."  I believe adamantly that I will do that again. That was another thing my momma told me, "There will always be an again." Although, she didn't mean it this way. She meant as a response to the word "never."

To date, I have done things that no one else, ever those who are recovering from a stroke, can believe that I am doing, but I am doing it. It may not be pretty. It may not be the usual way to do it. It may not be the way they do it. BUT it works for me and I am DOing it.

Sunday, March 22, 2015

Sunday Stroke Survival: Science Fiction/ Science Fact

It seems every day a new science fiction gadget appears in real life. What I'd really like to see is the medical tricorder appear from Star Trek. How cool what that be? A device to scan body systems, and diagnose your medical condition.

No waiting for hours on end for an MRI or x-ray, or blood tests before treatment begin. Just imagine what it would do for stroke patient where minutes equal the death of brain cells, death, and disability.

My neurologist and cardiologist have had a new toy for the past couple of years where you click off a bunch of symptoms and it searches a medical database for illnesses that match the symptoms which I thought was cool also. They were also gracious enough to let me play with theirs. The PDR (Physicians Drug Reference) has been an application for years for prescribing medications. So I was biding my time for someone to invent a working tricorder for medical use.

I guess science has been waiting for memory storage to get small enough. With Smart phones getting smarter, it's only a matter of time. Are you a Trekkie like I am?

If you haven't heard...there is a build a tricorder competition going on and the finalists have been announced. The prize is $10 million for the person or team that can develop one.
The rules...nothing drastic. We could have all entered, yeah right!
The device must capture...
  • 15 diseases
  • Weigh less than 5 lbs
  • Portable, wireless
  • Be able to demonstrate the device on humans
  • Vital signs monitoring for 72 hours
There were actually 300 registered in 2012. I consider that in itself amazing. But the 10 finalist's have some pretty neat designs.

Nothing is impossible with determination.

Thursday, March 19, 2015

Thursday's Tumbles and Stumbles: Mosquitoes and Garden Update

It's finally warm here in southeastern Georgia. We've already hit the 80 degree mark. Ah, the first volley of a hot, sweltering summer to come. But we had weeks of near or below freezing weather so the mosquitoes shouldn't be bad, right? Nope, I got bit three times yesterday and I'm allergic to them. Within hours, a single bite will swell to half a dollar size or larger. By the next day, the swelling will encompass the whole area of say the forearm with the same pain of any sprain. That's with my antihistamine!

Time to invest in some of those Off Clip-ons again. sigh  I actually wear two of them at a time. One is clipped onto my neck line and the other on the opposite side at the belt line. One wouldn't cut it. If I put it at my neckline my legs from the knees down would be a
prime target. If I wore it at the belt line, my face would be the target. AND, I'm not that big! I'm five foot nothing. But anyhow, it works. It's a lot better than taking a bath in the spray.

I set seeds again this weekend for my garden. The last cold snap was traumatic enough on my poor seedlings that I planted before. Some did survive the blast of freezing temperatures but they won't be the robust plants I want. I've been gardening long enough to know by sight. Nothing but the best for my garden.

So what am I planting this year?
Nantes carrots, Black Beauty squash, Marketmore cucumbers,early Jalapeno peppers, California Wonder peppers, Cherokee Purple tomatoes, Blue Lake pole beans, and okra Lee. These are all certified organic and heritage seeds. They are ones I hadn't tried before. I'll also be planting some seeds that I've saved like radishes, lettuce in my gutter gardens and other seeds I've saved. I've got to finally replant my Luffa gourds because I'm down to three pads from the previous planting four years ago.

I didn't get enough hay on my herbs this Fall, so my perennials died and will have to be replanted as well as the annuals. Remember my KFC Go cups from last year? Well, they are still going strong. They are joined this year by a couple dozen more. I have enough to where I don't have to split a cup between different varieties of seeds. Each type of seed will have their own cup. Wohoo!

Some things like beans and peas I plant directly into the ground, but others I start in these cups and transplant. I've found that if you soak the large seeds, (corn, beans, etc) in water overnight before you plant them they sprout quicker and have a better germination rate (>98%).

I've also mixed fresh compost into my beds from last year. You remember my composting system right? Well I had a slight mishap while emptying the top one. I ended up with more of it on me than in the
bucket. That's right from the top of my head down when it wobbled.

I've got my tools out to build another type of stand for next year. One that's closer to the ground and not at little bit higher than eye level for. I found the directions for it on YouTube. It's safer for me and semi portable by anybody but me.

Yes, that's 4x4s in the construction. I may also put 2x4s across all four legs for extra support. While I don't fill each barrel absolutely full, the barrels get mighty heavy. I mine have six barrel bolts for the lid instead of the one pictured for the same reason. On general principle, I won't fill a barrel more than 3/4 full. I ain't as young and strong as I used to be. I'm also thinking about spray painting them black for more heat and quicker composting.

Doing some not so quick calculating on the project 4x4x8 (4), and hardware... roughly less than $50 for two. Not too bad. Of course I could just dismantle the old one and repurpose. That sounds even better and it cuts my cost in half. I also think I'm going to add three door handles onto the outside  of the barrel for easier tumbling one-handed. It would just be a question of removing a few screws that are holding the "L" bracket in place on the inside and mounting them there.

That's me, always improving a good thing. Yeah, it's just the opposite of my "if it ain't broke, don't fix it" stance. What can I say, I'm female. Where there's room for improvement to make life just a little bit easier, I'll take it. Yep, I've got a plan. Now, I just got to make it happen while the compost barrels are almost empty. Totally empty would be better and totally washed out would be better still, but that will never happen.

No time like the present. The aide is here tending to my hubby and I'm off to Home Depot. How was your week?

Tuesday, March 17, 2015

Redefining Disability Project: Post #20

Happy St. Patrick's Day y'all.
Time for me to answer another question.

Do you have preferred language when it comes to disability? — There is a lot of debate about appropriate language and definitions of disability

Personally, I think there is a lot of hoop-de-la about titling. Disabled, physically challenged, visually challenged, handicapable, or whatever, it all means the same thing...there is something you can not do that others can and it impact your daily life significantly. All to be politically correct or someone might not be offended? Depending on the era, persons of color were called negro, then black, and now African-American. I'm not being racist here because I am a person of color also...yellow. I don't call myself a Japanese- American. I'm just an American. So I have a different skin tone than my neighbor. So what? This is America the Great Melting Pot or should I say Melding Pot because it took many nationalities to make up this country.
[stepping down from my soapbox now]

As far as me being disabled, it's true, but so are millions if not billions of others. The
definition of a disability to me, as I said above, is not being able to do something other can. Does it take a national decree to make me disabled? Nope. I know I'm disabled. The government decides who qualifies as disabled when you try to get benefits. I was denied. Does that mean I am not disabled? Nope, because I still have many things I can't do that others can by my definition.

Now, I'll be the first to admit that I'm not as disabled as many. I still can and do most things. Does doing these things create hardship, endanger me, and other wise frustrate the Dickens out of me while I figure out a way to do it (sometimes taking months or years)...yep. You better believe it. That happens when you have brain cells damaged by a stroke or in my case, strokes and paralyzing one side of your body.

But think about it another way,with government intervention, a person has a fear of snakes like me. Just the thought of snake paralyzes them into a catatonic state. Isn't that also a disability? No,
you say because that isn't an every day occurrence that you are faced with snakes. What if they were a snake charmer? Where handling and seeing snakes was their occupation. [getting to willies!] Well, yes, it's a disability, but they could find another job. There is the kicker with the government's intervention in defining disability.

As far as what I'd like to be called about my disability...I like the term handicapable. That is, if I HAVE to be labeled to fit in some group or other. I ain't dead yet. Many things have tried to kill me off, but it's not my time yet. I've spent my whole life busting stereotypes and groups being an abby normal type person. I really don't like them. It's too neat and tidy. Life is anything but neat and tidy. Not everyone fits in one box or other.

Another term I've heard lately is "Differently Abled." I really like this. Everyone has their strengths and weaknesses some are just more visible than others. I'll bet I can write faster and clearer than any other righty with their left hand. I'll bet there isn't a knitter, who is not disabled, is able to tie a knot in their work in progress to change colored yarn faster than me with one hand. Does that single me out and make me extra special. Of course it does. It makes me differently abled. Not they couldn't do it with practice, they could but they don't have to. That's my whole point. Until you are faced with living in my shoes and facing my challenges, you don't know what you are able to do.

When all else fails...try twisted logic.