Sunday Stroke Survival: Winter Doldrums

As winter sets in here in our little hallow, I start reevaluating everything. Freezing temperatures, and snow and ice makes driving up the foothill precarious enough for us to not even try in Mel's 4-wheel drive truck. I mean in an emergency we'd chance it, but just to go to town...no way, no how. You'd think I'd be stir crazy, but I'm not. There is plenty to keep my hands and mind occupied.

In case you don't know how much a cord of wood is

It isn't always so bad. Some days we've hit almost 50 before the sun goes down and with it the temperatures. We've burned through a cord of wood already and we haven't hit the really cold months of latter January and February yet. We'll probably go through at least four cords this winter. It's supposed to be a cold one. But even that being said. I prefer temperatures around the mid 60s or low 70s. My heart usually behaves better. Mel on the other hand, in her born and raised Orlando Fl body, prefers high 70s to low 80s. Growing up and living up north taught me to dress in layers to keep
warm and keep myself from being overheated at the same time.Yesterday, she finally pronounced it warm enough and I had stripped down to a tank top,

Today, I shed two layers (jacket and sweater) and was still working up a sweat loading a 1/4 cord of wood into the back of my van from the big wood shed to move onto the front porch. Mel would have just loaded it into unto several wheel barrow loads to make the trip, but being one handed, I have an issue with the wheel barrow. Chock it up to another tool that takes two functioning hands. At least I know that I can handle these splits of wood with little or no difficulty. These aren't the evenly split pieces of wood that you see bundled in the stores. They can weigh upwards of five to ten lbs two feet long a piece with plenty of splinters upon splinters in my arm, hand and fingers. Yes, I should be wearing work gloves, but they are a royal pain to get off and on.

Yes, I know I could use a wagon to pull the small load, but heck, I'd already taken care of the chickens, rabbits, household animals, made the bread/rolls, and set up dinner to cook on top of the wood stove BEFORE I went to get the wood. I had also gathered a 5-gallon bucket of kindling. Burning that little bit of gasoline was a lifesaver. That was until I got bogged down almost to the axle in the slick, clay mud. I grabbed the crepe myrtle branches Mel had cut down over the summer which lined out new makeshift driveway. It gave me enough traction to make it around front again. Another day on the homestead or Murphy's Law strikes again. I guess I could have played the disabled woman in distress card, but honestly, it never crossed my mind.

I'm considering totally coming off some of my medications. I'm beginning to wonder if I really need them all. I am always my own self advocate. I have to admit the Cymbalta helped my depression after my beloved's death. I'm definitely more active here than I was before. Yeah, my body aches, but look at what I'm putting it through. You'd think my fibromyalgia would flare up big time, but it hasn't enough to incapacitate me in almost two years. Considering my pain was so great before that I had even considered taking additional meds. I'm handling the pain better with more natural methods like cups of Earl Grey tea. Bergamot oil has been used for centuries for depression and nerve pain. I work through the pain. I do use reason and stop when I need to. Although I am taking more breaks than I used to ten years ago. Yeah, yeah, I know, I'm getting older too. It may take an hour or two to gain control with meditation and a couple cups of Earl Grey tea, but do I really need prescription too? Meditation is also  my control over my PBA. I'm not really asking you and I will talk to my physician.

My muscle relaxers are the bane to my existence. I'm on Botox, Zanaflex, Baclofen and Valium. Plus dry needling and therapy.  None of them are working worth a hoot to stop my post stroke spasticity. When the Botox wears off that's it. My foot inverts and will develop sores unless I use care to prevent it. My wrist is solidly locked and contractures prevent it from releasing to neutral without some serious, constant manipulation. Surgery is even more not an option with a third heart valve and a triple A in the mix. I haven't taken Valium in over a year. The Zanaflex plays havoc with my heart. I have gradually tapered my dose down to 2 mgs per night instead of 16 because of this. And yeah, there was discussions with my cardiologist and neurologist. There are definitely advantages to not sleeping at a 45 degree angle, ingesting quantities of salt before bed to keep my heart rates above 40 and not feeling like a fish out of water gasping for breath every night since my aortic valve started crapping out last year.

What I've opting for instead of drugs. I'm embracing my spasticity. It is what it is. It's going to be part of my post stroke existence until the powers that be find a way to fix it. It's not a part time thing but a full time issue. Sometimes is worse than it's other. When it's bad, it's horrible and nothing makes it better. I would live the horrible times in a continuous, warm bath of epsom salts, rosemary, and thyme if I could, but that's not living. I'll cry and move on until the next time. Even when I'm in a Valium induced sleep, I'm still in pain. So I'll treat the pain with Tramadol when necessary. I'll pick and choose what I take and when. Hopefully, the increased Botox will have a longer carry over effect so there will be less breakthrough of severe spasticity between series. It's a shame when you have to pick which poison you put in your body.

So do you reevaluate decisions during the winter doldrums? What have you concluded?

Nothing is impossible.

Redefining Disability Project: Post #17

Time again to answer another question.

Have you experienced discrimination because of disabilities?
This is a big issue for me as an advocate. All I can say is some have tried, but I won't allow it. It's like a bully picking on someone smaller, it raises my hackles. I've never been one to stand back and watch discrimination occur for any reason.

Christina and Jenn today

When my daughter Christina, #2 daughter, entered school for the first time, I asked the teacher to talk to the class about her braces. She has Rheumatoid Arthritis. From the time she was 18 months old, she wore these braces to keep the swelling from disfiguring her permanently. While she could wear her hip, knees, and arm braces while away from school, she had to wear a brace specifically designed for her to write and color with because she couldn't hold a pencil or crayons.

By being proactive and explaining to everyone about her disability and the what the cool, metal brace did, no classmate singled her out. She excelled and conquered.

Jennifer, #4 daughter, took my stance. She's learned by example. She always called herself special and unique embracing it as her own. She made others envious that they couldn't be like her. In fact if she changed her hairstyle, within a week several other girls came to school wearing the exact same hairstyle.

Both of my girls were special needs kids. Christina with her JRA and Jenn with her TBI (traumatic brain injury survivor). Initially, I paved the road for their campaigns of anti-discrimination towards the disabled. Now they continue it just like their momma.

You can try to discriminate against me for my disability, but watch out for the fight to come. If it ain't right, I'll be its champion. God gave me a voice and writing ability to make sure it doesn't happen. The message is clear. Stand up and correct those that believe in discrimination. If you can't speak or write take someone with you that can, but use some common sense. If it is dangerous for you to do it, don't.

Sunday Stroke Survival ~ Self-Advocating

Someone emailed me recently and said they were tired of being their own advocate.It is often a thankless job where you are knocking your head against brick walls.

I understand.

But then, I've always been an advocate in one form or other. I fight for what I want. I'm a Don Quixote of sorts tilting at windmills. I refuse to see injustices and the little, often helpless, person get stepped on. But that's just me. I'm wired that way but not all people are.

I also believe in being proactive in the things that really count. This includes matters dealing with my family especially.

Way back in the early 70's, I spoke out as an ombudsman for the Lung Association. It was mainly a public appearance type position, but I took it seriously. Who knew then I'd have a husband with COPD? Not me.

The mid and late 70's through the 80's, I was an ombudsman for a naval squadron. Ombudsman/advocate/trouble shooter and solver. Yeah, I wore a lot of hats even back then.

In the early 80's, I found new new challenge to take up. This was very personal. It involved my two year old daughter who was diagnosed with Rheumatoid Arthritis. I studied, educated myself and others until I headed the entire southeast region.

In the 90's, I found myself being a child's advocate because I had a TBI child in public school. The kids had a way of being drawn and speaking to me. I became their voice because I was an adult and surely, adults would listen to another adult faster than a child. I also became the voice for disabilities at the local college for the same reason. This was before ADA. All these positions over lapped each other. They were underdogs who needed a champion.

I guess most of this was because I have a big mouth. If I believed in something, I just couldn't leave it alone if improvements could be made. Now I find myself recovering from a stroke. Yep, I'm an advocate again.

I know I'm not the only one going through all this stuff alone. I also have the ability to speak to everyone and anyone no matter their station in life. I can be pushy. I can be compassionate. I can be the teacher. I can be the student. I can get my  point across to anyone willing to listen and even to those who don't.

Being self advocating is a tireless, unending job. But then again, who better to make your point than you. You know better than anyone else what you are going through. Okay, so you don't like being pushy, the center of attention, and can't put the words together to make your point.

Even Moses didn't believe in himself in the beginning so he had Aaron speak for him. We all know what results that had. Aaron had no power or authority like Moses did. We are all like Moses in the beginning. We have to get angry or very upset to speak out. That's okay, if that's what it takes to get you into action.

Do I ever get tires of fighting and beating my head against the proverbial brick wall? Oh yeah! I am after all, only human. The past couple of weeks has been up to my eyes in frustration to the point of being a weepy mess. But today, I was measure and molded for a new AFO. After almost a year of fighting and pressure sores, I won against the insurance company. They will cover my new AFO 100% instead of 75%. Some battles take longer than others. I also changed their policy about a new AFO only every 5 years.

My battle for Botox took 4 months.

My battle with the grocery store about their parking took 1 week before they added extra space to their handicapped parking instead of just painting the space blue. ADA regulations helped with that.

Before you can self advocate you must do a few things to succeed...

• Educate yourself.
• Get your ammunition ready. Get all your ducks in a row and circle the wagons because if it's gonna cost them, they'll fight back.
• Put on your big girl panties/ boy's briefs because you are going to be at it for a while. Think a filibusterer in Congress. You have to be an adult or they will chew you up and spit you out.
• Armor-all your skin because you'll need a thick hide.
• Stick to your guns.
• Don't take "no" for an answer. You can compromise but you will not accept no.
• Talk to others. More than likely they are having the same battle. There is strength in numbers. You don't have to go it alone.
• Surround yourself with supporters. There will be a mountain of naysayers trying to chat in. Ignore them.
• Enjoy your hard earned victory. Or if you are not victorious, go back to the beginning and try again bringing more and better ammunition.
• The only time you face certain defeat is when you give up.

Nothing is impossible with determination.