Redefining Disability Project~ Post #2

This is question #2 from the list of the Redefining Disability Project.


2. If you have a medical diagnosis, do you see yourself as having a disability? Why or why not? If you don’t have one, how do you view the concept of disability or the people in your life who have them?

Up until two years ago, I was invisibly handicapped. I was disabled but able. Multiple back surgeries and joint replacements will do that. While I was technically disabled, I really didn't view myself disabled because I could pretty much do what I wanted within a set of limitations. I never bothered to try and file for Social Security Disability because I knew I would be able to adapt to somewhat normal movements despite my doctors trying to get me to file. Yes, it took years, but I proved them all wrong and did it within reason.

But, all that changed with my stroke. Now, my brace wasn't temporary so bones could heal. My brace and possibly a cane would be a visible part of my life forever. I progressed from wheelchair to walker to cane very quickly in a matter of months. My arm with the spasticity was visually nonfunctioning. My speech pattern had changed with the aphasia.

Now, I am visually disabled so I'm disabled. The fact that I can't use my right arm, can't move my wrist or fingers is not only a visible sign of being limited, but is limiting things I want and should be doing. This is different. Now I'm disabled for all the world to see and hear. No one asks why I have a handicapped license plate. Just like when I turned thirty and they stopped carding me to buy alcohol in a convenience store. 

It's a sad turn of events, for sure. A proverbial slap in the face. Not that I liked people asking why I was handicapped. There was a comfort in not being visually handicapped. I looked no different than anybody else. I could even deny the fact for myself for certain things because although limited I could function. No, I wasn't lifting several hundred pounds anymore, but only I knew that. Denial can be a beautiful thing.

If I get excited or giggly, you can't understand a word I say...or even be able to say a word. I'll just have one arm gesturing wildly. With only one hand gesturing, do you only understand half of what I'm saying? I've often wondered over the past two years. Yeah, I talk with my hands. It used to be sign language, but now it's just emphasizing everything I say, but that's how this bad habit got started.  

To prove my use of visual impact of my speech, look how many graphics I use in my blogs instead of others. I still try and use hand gestures because my husband is legally deaf. He reads lips are facial features to understand his 95% loss of actual hearing what is being said to him. I could teach him sign language, but he's a stubborn Irish man and clings to his 5% and is resistant to learning it. He turned 66 last Saturday. I pick the fights I can win.

Why do I fight the term disabled? Doesn't everyone want to be normal or viewed as normal? Is there a stigma attached to being classified as disabled? Are there preconceived notions attached? Are we second class or even third class citizens because of being disabled?

Yep, it's a matter of perception. The world touts the "beautiful" people. But true beauty is what really counts and it's inside of all of us. Yes, even me. It isn't like battling cancer. We didn't die or lived to be touted as heroes. We wear outward scars of our battles as we struggle to find our new normal. We seem somehow lacking to those who view us on a daily basis. We are missing limbs, eyesight, mobility, and can't be everything for everyone else. We have an innate need to be needed and useful part of society too. Instead of being looked down on, or pitied, or scorned.

I have found that beauty begins within. You need to recognize it in yourself for others to see it. Find your talents. Even if you can no longer do this or that. You still are a valuable commodity. You still have something to offer and bring to the table with the "norms." Stand up, even figuratively, you have fought harder than any of them to get where you are or still be where you are at. Disabled is just a word used to describe us. I prefer the words "victorious survivor."

Nothing is impossible with determination. 

Sunday Stroke Survival~ Oh My Aching Back

Everyone has an issue with their back from time to time. Either they "slept wrong" or "twisted it," or lifted something heavier than they should have without help. Sometimes even with help you get a tingling or pain that runs down your legs or up your back, or centers in your hip area.

You'll see little, old ladies stomping their foot on the ground trying to get it to stop. Notice in the picture the sciatic nerve runs in the foot also. But sciatica is not just for old folks like me, it strikes young folk too. When your back hurts and runs down your legs or travels along the path of the sciatic nerve, it called sciatica.

Most times, the occasional bout of sciatica is not a problem and short lived. It's when the problem is chronic that poses infinite possibilities of the cause. The sciatic nerve is a long one. When you do everything the specialist tells you and you are in pain weeks later after the offense.

That's what happened to me. After my helicopter mishap and my lower sciatic and half of my lower lumbar spine was crushed, rebuilt and fused, and rods put in place to stabilize it. I developed hip pain in my replaced hip.

At first I just thought I was overworking my prosthesis. I had gone back to nursing again. This time in a hospital in the post-surgical floor. With my limitations, working on choppers and ambulances was out of the question. I went to work after teaching 20 kindergarten children for eight hours and had to look forward to an eight-hour shift on the floor. Nothing unusual about that for me at the time.

The pain increased over time for about a month. I swore to myself to be kinder to my body. But with five kids at home/school and two full-time jobs, it was nearly impossible. I made a point of sitting correctly. I did my back and hip exercises as I was supposed to, but still the pain persisted becoming nonstop.

One night, the pain became unbearable. I limped and hobbled through my shift, and barely made it home without screaming out. Needless to say, I called my family doctor the first chance I got. I couldn't work like this at either job or care for my family. Both my legs had gone from tingling pain like they were asleep to lava flowing. I could barely take a step without my pain level jumping to an eight out of ten. I was not a happy camper at all.

An x-ray showed boney fragments from my spine were pressing against my sciatic nerve was. A "Hoover Vacuum" type surgery was needed to remove them to stop my pain. No, a Hoover was not used in the surgery. It's just what I called it to differentiate it from my previous procedure. My doctor was surprised I walked into his office. If I chose not to have the surgery, I was facing being permanently in a wheelchair within five years with permanent damage. So I hopped a flight to Atlanta for the procedure. Keep in mind, I was only thirty something.

The cause was degenerative disc disease. Another strong hereditary factor gone berserk. Aren't I the lucky one. If I had not had accident it might have shown up sooner or later, but the sciatic and lower lumbar had been concreted together five years prior. Now it was the upper lumbar affected and the pieces migrated down with gravity like everything else as you age. The surgery was a success pain wise, but a failure in that the nerve was damaged and I lost all sensation from the knees down. It took two years for the nerves to heal. I started getting quarter sized patches of sensation back and now only spots about the size of a quarter still remain numb. The procedure is repeated every decade or so to remove the disc fragments before they become trouble again. It's that time again but now we are in the thoracic and neck regions of the spine, but we are delaying the procedure for as long as I can. But then, what impairment is caused by the disc fragments or the stroke. It's a juggle to decide.

Now decades later, I have a stroke. The doctors all say that I was lucky not to lose sensation as well as paralysis. But I don't know. Of the two, the loss of sensation was easier to deal with. With sensation loss you just have to be aware of the position of the affected body part, but you still have movement. That just takes a quick glance and a little focused effort. With the paralysis, there is no movement. But then...

Nothing is impossible with determination.

Redefining Disability Project~ Post #1

As promised last week, I'm joining on the Redefining Disability Project.

I could start anywhere, with any question but I'll start with #1.



 
1. What is your experience with disability? — Do you have disabilities? Do you have loved ones who live with disabilities? Do you work with people who have disabilities?


It seems I've always had one or more disabilities from birth. This has followed through to my last disabling event, my stroke. I've had a multitude of living with and caring for loved one also from my parents to children and extended family.  It seems that once I was disabled everyone around me was disabled in one form or another. Let's face it. Everyone has a disability or disabling factor even if it is only fear.
I seemed drawn to the disabled and them to me. Whether it be family or strangers. After all a stranger is just someone you haven't met yet. In part because of my caregiver tendencies and my can do attitude. I've never been one to be down trodden without fighting. The disabled are drawn to me because I lead by example and keep a positive attitude. Adaption is a way of life for me and is as second nature to me as my stubbornness. They want the hope they see radiating from my very being.


When I was born, most babies born prematurely either died, had severe health issues, or were blinded by over oxygenation. I was a fighter even back then. At a little over two pound, I lived and better yet, thrived. I was not totally without some complications, my lungs are poorly formed and have low breath intakes even now. Add to this a poorly adapted immune system and you have the makings of a sickly childhood, but it wasn't overly so.

Now it's just hemiparesis, and a funky way of talking because of my stroke. Nothing can keep me from talking, not even the aphasia. I am and always have been an underdog cheering fool. No matter what my disabilities are, there is someone out there worse off than me that needs a cheerleader rooting for them.


These others need to be able to laugh even if it is at another's misfortune (slap stick). They need a cheerleader and someone on their side urging them to try one or fifty-thousand more times until they get it. Who better than another disabled person? They may look at me and feel sorry for me and that's okay. For the briefest second, they aren't feeling sorry for themselves and it sparks a hope in them. I've got more than I need of stubbornness, hope, and being able to think outside the norm to share. And, instinctively another person knows this.



Now to the "norms" (non-disabled) who look at me with pity dripping from every pore, don't. I'm smarter and better able to cope than you'll ever be. In spite of my inner and outer disabilities, I am getting things done just like you are. Maybe not entirely like you would do it with two functioning arms, no brain damage, or two working legs, but I'm still accomplishing goals and the honey-do lists.



Granted there are a host of things that I have to ask others to do, but I'm networking and utilizing services that would have gone untapped if I didn't need them.

Sometimes, I'll ask for help from others to make them feel good. This way I extend my blessings. My neighbor will roll my trash bin out to the road on garbage pick-up day. It's not because I can't. It makes them feel like they are helping.

Sometimes, I ask for help not because I can't do it but because others can do it more easily. Now I could ride my tractor to cut my grass. I'd definitely have to modify the steering wheel for tighter turns and lower the speed way down, but I let my grandson do it because it is easier. He feels like he's doing something for his grandparents and it keeps his boredom down. I just know that he loves helping and doing outdoors things. He built my growing beds and my chicken coop too.



Sometimes, there are just things I find impossible to do right now. Because 1) it seems

impossible because I haven't figured out how yet, or 2) It wasn't designed to be used by a person with one hand.

 I haven't figured out a way to use these yet with only one working arm, but I haven't spent much time working on this problem either.

There are probably a dozen of these things a day I find I cannot work. But I'm not losing sleep over it. These are just minor bumps in the road. There's always an alternative way of getting things accomplished.

Some say the disabled are limited, but I say the "norms" are the ones disabled because they haven't conquered our challenges. You never know what you don't try. You never try some things because you don't have to. How limiting is that?

Nothing is impossible with determination.

Sunday Stroke Survival ~ Too Many Doctors in the Mix

There is a small, orange pill on the market that does a jam up job as a blood thinner called Plavix. It's a shame I wasn't on it at the time of my stroke or I might have been delayed my family history catching up to me. I had been on it for years prior to too many doctors in the mix. Here goes my story...

In 1998, my blood tests came back with cause for concern. I had a very high red blood cell count. So I was diagnosed with erythrocytosis (uh-rith-roh-sie-TOE-sis). A big word meaning high red blood cell count. I was put on Plavix to thin my blood because I was allergic to aspirin. Considering all the chemo I had received during my cancer treatments, I thought this was good news, but it wasn't. Now my bone marrow was producing too many of them. My blood was clotting too fast. I had, in fact, thick blood.

I was in the third vial category.

Fast forward to 2000. It was a Jo massive trouble year with my heart attack blowing out two valves in my heart and damage to the muscle. Not to mention an abnormal pap smear leading to a hysterectomy, bladder and bowel resection thanks to five tumors in my lower abdomen, AND an abnormal mammogram leading to the diagnosis of breast cancer. Yeppers, it was a red letter year of huge medical expenses and surgeries. A good thing I decided to retire starting in January that year. I wouldn't have had time to work.

If I had not already been on Plavix, the cardiac surgeon who put in the stent in my Left Coronary Artery (LCA)would have. He also told me that my "thick" blood shouldn't be a problem anymore since he fixed the artery carrying oxygenated blood to the heart. If I had no further problems with high red blood cells, I could come off the Plavix in five years. The thinking at the time was five years and has now been extended to ten years, but none of my doctors knew that.

Fast forward again to 2006. After having reconstructive surgery on my breasts after the previous cancer, I didn't expect to have to go through it all again. I did, but this time I opted for radiation treatments. To heck with reconstructive surgery afterwards.

After I'd beaten the BIG C for the fourth time, I started to have issues with my bowels. I got a referral for an internist. He read over my chart carefully and decided I needed a colonoscopy. If you've never done this prep be warn...it's bad! After it was over, the good news about no polyps, and I was in his office again he was deciding what to do. He wanted me to take prescription strength Prilosec. Two capsules would equal six over the counter capsules.

There was just one problem. Prilosec was contraindicated with Plavix. He saw that it was over five years since my heart cath with no problems other than a very irregular EKG and I was on medication for ventricular fibrillation. He stopped the Plavix so he could treat me for gastric reflux and irritable bowel syndrome.

My cardiologist wasn't really happy about this six months later, but all my blood work looked good except for my cholesterol being high. I'd tried statins to lower my cholesterol, but developed severe leg and abdominal cramping. Heredity was at fault because of my Germanic heritage. The statins were stopped. She put me on six capsules of triple omega capsules a day and a strict meatless diet. Still my cholesterol was almost 300.

Very slowly over the next six years my erythrocytosis returned. My cholesterol levels still weren't great but they were the best they were going to get without statins. A bad genetic heritage led up to my stroke in 2012.  A small clot formed in my heart and went to my brain. The GERD and irritable bowel medication was stopped and I was put on Plavix again.

Now my stomach burns while the doctors search for a medicine I can take to counteract the problem while being on Plavix, because I won't come off it again. I can't take the chance. I never venture far from home unless I know where the restrooms are. It's like those commercials for Crohn's disease, except I don't have Crohn's. So if you see me making a bee line for the bathroom, don't stop me to chat.

I should buy stock in Tums, but can't. The good news is there is no sign of fragile bones or osteoporosis on my latest bone density scan. All that extra calcium is being put to good use. And, I don't get gassy like I do when I take the oyster shell calcium supplements.

So for now, I take my Plavix each and every day. Who knows the next stroke, I may not survive another day to keep fighting.

Nothing is impossible with determination.

I've Gone and Done it Now~ Another Blog Project

"OMG! A blog Sunday, Monday, Tuesday and Wednesday from Jo???!!!"
Yep. (tee hee, giggle, giggle) I'm almost back to a daily blog. No, not really. It's just things keep popping up to tell you.

I did it. I've been reading about for a while and it struck a chord with me. So I joined in. I hear and see you out there. "Oh Lord, what has she done now?!" all the while you are looking heavenward, shaking your head, or staring at your big toes and sighing.

I joined the Redefining Disability Blog Project.

The brain child of Rose B. Fischer is to promote awareness of disabilities. I've read quite a few fascinating blogs already.Guidelines for the challenge is a set of 52 questions to be answered every Tuesday. I'm starting about 5 or 6 questions behind the ring leader, but new folks are added to the list too so I'm not really behind. The answers all concern my take on my disability.

By a list of questions being posted already I can answer them as I have time and set the scheduler for Tuesdays. It will allow me to edit out most of my errors. I imagine I've still got a couple dozen grammatical errors that I don't see in each post. But you know what? I don't care. I'm writing again even if it's only a blog.

Anyhow back to the blog project.
What I bring to the table-

• I have a humorous, down-to-earth way of looking at things. 
• My views are mostly based on the seat of my pants common sense meets an Abby Normal way of my thinking outside the box (norm). Most people after hearing my solutions say they have never thought of it that way and it helps. 
• Me, I like to share and play nice with others for the most part. I'm fond of saying, "I'm the nicest person you've ever met, or the biggest (b) itch in town and it all depends on you." 
• I can offer a broader perspective and maybe even give you a look at a different perception to focus on. 
• Above all, I try to remain positive and upbeat in blogging. There's enough bad stuff to be found and I refuse to add to it. 
• A little encouragement goes a long way. It can mean the difference between success and failure. 

So that's whats up on this fine Wednesday morning. Fall is definitely in the air here with the lows in the 60s and highs near 80. What are y'all up to on this hump day?

Opps, I Did Again ~ Battles with Aphasia

Normally, I can warn the person listening to me that the word I'm using is not the proper word. But there have been several occasions where I slip up.

Case in point...
The hospice nurse was asking how my husband was doing on his increased morphine. They had added MS Contin to the liquid morphine for hopefully longer lasting pain control.

What was happening-
He wasn't behaving normal to me. He took exception to everything I said. He wasn't sleeping the way he should. He was restless. He had more panic attacks and his paranoia was rampant. All negative side effects and it made a three-day long nightmare! I couldn't even go to the bathroom without first answering where I was going, how long I'd be gone, and promise to leave the door open in case he needed me. That's a whole lot of seconds when I don't know I have to pee unless I shift positions and being on Lasix, a prescription water pill, when every second counts against me making it to the toilet, pulling down my britches, and sitting on the commode without peeing myself.
(I can think of the words now after it is all said and done.)

As a writer, words are my way of life and a way to earn a living. But as a stroke survivor with  aphasia, my life has taken a serious detour. From being a multi-degreed person to an imbecile in nothing flat. Maybe that's too harsh, but it sure feels that way at times.

Back to my story. I told the nurse that he was combative. She raised an eyebrow at me but marked it down on his chart, a legal document. She asked if I wanted Haldol (a heavy-duty anti psychotic drug) for him and I shook my head still not realizing my mistake. This time it wasn't until much later that I realized my mistake and poor word choice when I was reading the copy she left me.

I didn't mean "combative" which is a physical action, but not the word that described his behavior as being verbal instead. I was up to my neck with guilt. It was my fault. No wonder she raised an eyebrow at me. He might be dying and weak as a kitten, but they have sharp claws to do damage with. She was probably picturing him doing just that at my use of the word.

I refused to call the nurse back to try and straighten it out after hours. She would return in a couple days for another check-up. Besides, I don't always make sense over the telephone. It had already been a long day of aide, nurse, and recertification nurse visits, plus a session with my occupational terrorist. I was too tired to even try to make sense.

It was another day before I realized the words I was looking for was "irritable" and "argumentative." I wrote them down so as not to forget them. I was praying I could read my writing by the time the nurse got here. I kept saying the words to myself over and over again both verbally and mentally. In the meantime, I was dealing with my husband's increased agitation because he was still on the prescription. I wasn't sure whether it was the medicine or the tumor in his brain causing the problem. Either way, it was bad news.

The nurse had no sooner walked in the door, and I was apologizing and bombarding her with an explanation. She told me no worries and I saw in her notes that the change in statement was due to the wife's aphasia. After playing twenty questions, it was decided to pull him off the drug to see if his behavior changed for the better or continued. 

It was the medicine. Within twenty-four hours of being off it, my hubby was back to his semi-sweet nature self. Now if the other drug reaction to his expectorant was so easy to fix. It has gone systemic and may take a month or more for the itching all over his body to stop. He's on an antihistamine with an anti-itch drug. Another penalty choked up to his weight loss.

...And so goes the Murphey Sa-a-g-a-a. (To be continued)