Friday, July 18, 2014

Appalachia: Living in MY World

 Well...it's always a challenge to know what to write about, how much, and what to reveal about family on a blog. Folks put some crazy stuff out there and I've been hesitant believe me. I could write volumes on politics and don't. We are divided enough. Write about current family but only with their permission, and things that are GOOD to write about. Writing about ancestors, already passed, is easy enough to share about. Even then, you want to tell the truth and make them look good in the process, but in reality...they are dead to this world and probably don't care.

But sharing what's really going on in my part of Appalachia and my little part of the world...it's been a struggle. While my internet is up and paid for, better share this quick because I don't know the future. I have faith I can keep what we have and things will get better.  The blackberries are in!


Last fall, my son cleared the blackberry patch. Last thing he did
really physical but he didn't get them trained. I've been collecting
 in the challenging tangle and freezing for when I have energy to
process. Freezer don't fail me now!
My son has been diagnosed with an aggressive form of some kind of crazy inflammatory arthritis. Tests for Rheumatoid Arthritis show up negative, but he has all the symptoms, plus a few more. Just hit him out of the blue last summer. He just started losing weight and complaining about his knees swelling with pain.

Most of us would love to be able to eat as much as we want and lose weight, but there comes a time when you want that to stop. He was very anemic and eating like a horse. A couple of months ago he looked like an Auschwitz survivor with knees the size of large grapefruits.

Well you guessed it...no insurance...no regular job, especially since he spent his time taking care of me. They didn't expand Medicaid in Virginia, so that does not cover him. He was eligible for it, but unfortunately they sent him a card that only covers pregnancy! I told him, if you get pregnant, I think there is an award out there for the first man that does, and you won't need Medicaid.

He's been so ill, it's a bit scary and he is not that old. We found a charity care program (thank GOD!) but most of the care is 150 mile drive from us...one way. We had the challenges of costs to get him there. I wasn't driving, he can't bend his knees to drive, so it's been fun!  We have found partial programs but most don't cover some of his needed medications. So much has been cut even in the private charity world...we just hit a bad time to be sick and down on the old luck in Virginia.

We have had friends and family that have stepped up help cover his trips to the doctor and his medications, some of the bills. But the old credit card looks like the national debt, to cover the rest.

He had been taking care of me, working odd jobs and covering the bills I could not, doing the jobs needed around the house. Now it's been reversed and I'm a lousy caretaker!! Bless his heart!! He can't bend from the knees and I can't stand too long. We still manage. You should have seen us fixing the stairs last December! Could have been a cartoon!

Got a tiny garden planted this year. So proud of
myself.Got some BEANS!
But it got me thinking about disabilities and working with them. I've always worked with a disability of some type. Been ill most of my life with something. My dad called me the "strontium 90 baby".  We lived in an area while he was in the military, that they were doing nuclear testing. The fallout of strontium 90 was showing up in the cow's milk I was drinking. I've thought about that with each illness I've had and I've had some pretty weird illnesses over the years.  But I didn't let these illnesses stop me. I just learned to live with them.

Three years ago the illnesses kept multiplying, on top of what I was living with.  I couldn't function like normal people anymore. I became not reliable to do my job, not really functioning on any productive level. Never been so sick in my life and I still am. I could have been on disability 15 years ago and chose not to until there was just no other recourse. I applied and was awarded disability in a month! Yep...I worked with a lot of illness going on in the old bod for years.

 I was fortunate enough to be in a place to have medical care to help me get to working again. Help me gain strength to heal to a place I could keep going and working and producing and paying taxes. Have access to programs and medications that helped.  I'm glad I didn't have cancer or a lousy insurance company policy that didn't cover at least some of it. Though last go round I still had to refinance my house to cover what wasn't covered by "good" insurance. It was before the ACA act kicked in...so don't go there.  It did not used to be that way!!

Today in America...we've hit a mean season. For myself and seeing my son go through this, never before have I known such cold disregard for people getting ill especially on the domestic spending legislative level.

There are a great many people in the community who understand and try to help, but the need is so great and we just came through a great recession/depression. Regular people are not back on their own feet and so resources are limited at best in the private charity care world. At the same time Congress and legislatures are cutting domestic spending at record levels.

And I have no idea what the heck is wrong with our state and federal government and the insurance companies! I don't care which side you are on...letting real Americans, (my son is not a new immigrant!) do without needed health care, or bleeding people dry when the need is so great because of a political pissing match and pure greed is just STUPID!  We are killing our own people faster and quicker than any terrorist or take over of this country ever could.  JUST FIX IT!  Create a system where those that are ill have access to health care and don't go bankrupt in the process.

Anyway, end of rant. I went to Virginia Aging and Rehabilitative Services this week, to sign up again for services because my blog work has me believing I might still be a contributing member of society and can make some funding to supplement the disability I get. Believe me, I'm grateful but it's pitiful!!  I MISS MY JOB AND MY JOB MONEY!!!

I need to try to take care of my son until something breaks lose for him, the medicine gets him better or something. He's applied for disability but because of his age, I bet they deny it. Just do anything I can to help take care of his medical needs, keep us in our house, the bills paid, and my link to the outside world...the internet. I signed up with my old case worker....see they helped me before. It's how I kept going and kept being a useful member of society.  Problem is, I can't work a regular job anymore, not even part-time. I would NOT hire me!

Just ask my family. I wear out quick. Plan a Sunday dinner, get it cooked and fall asleep and miss the whole darn thing. The kitchen is usually cleaned up and a plate waiting for me in the microwave. But that WASN'T my plan!

The old heart goes to beating funky and that's it...I'm done for the day. Or when I can't even move because of pain. Yeah...those symptoms sort of hard to put on a schedule for regular work. I don't function on a regular schedule anymore. Used to be my medications kept me going...that doesn't happen anymore.  There are no pills curing this.

Believe me, the body and symptoms, just won't listen or cooperate with me at all. I say, "I'm going to do this today," my body says, "You wish!"  Sometimes I can fight it, and do what I wish, but I really PAY for it...for DAYS.

So I have to be careful. I'm learning to juggle doing whatever I can on low symptom days. Rest up for big events. Do what I can, when I can. It's not unusual for me to be folding clothes out of a dryer at 3 am because it just so happens to be the time I am up and FUNCTIONING.  It bothers me to no end to let the rest of what I want to do GO!  But I try not to let it get me down. I'm alive...I woke up today, and beat out everyone else that died last night...it's a good day!

So I have been talking to friends about what I CAN do. Driving is not an activity I do well these days. After I came back from VA rehab, I set down in a chair and fell asleep for several hours. Wears me out!!

The blog is monetized with ads but I hate those that have so many. I might add one or two more. It doesn't produce much, but every little bit helps.  It was suggested I take the best stories of Appalachian Heartwood blog and put it in book and Kindle form on Amazon's Create a Space, ask for a donation.

I actually have part of a novel I was working on years ago. Maybe I can finish it and can get it out there too.

I can also try to put together some how-to videos. That came up when I volunteered at the Ceres Day celebrations in May. I didn't last long demonstrating corn husk dolls, as my illness showed up and cut it short. I've been demonstrating crafts and showing thousands of folks how to do these crafts for years, especially primitive stuff. Using video..I can rest and continue..have to show it only once and there you have it. Immortalized forever!!

Which I would be really happy to have certain crafts I do shared that way. I feel like when I'm gone, some of what was shared with me by my elders, goes with me and should be shared before that happens.

My son had an eBay store, he's been so sick, he hasn't had the strength to do anything.  I'm going to try to take it and work on it with him. He's going to have to walk me through most of it. It's changed so much since my day of fooling with it. Whatever crafts I make in the video's sell them on eBay or etsy.

Of course all these plans rely on whether we can function or not!! He's fighting not only symptoms of the disease but of the medications. The medication they have him on is an old cancer drug and it treats your body just as BAD!!  He has started to gain weight back which is good. But he is still in such bad shape.

But these are plans and we are going to continue on. We come from good stock I know it. We will survive this as our blood and kin have survived everything in this old world.

 Just a side note: our water is pumped from WV...sometimes it has a smell and sometimes it foams when you boil it. With all the stuff in the news about water, you can't help but just wonder if what is attacking us is part of what we are exposed to in the environment, genetics or past medical histories.

Genetics...especially for my son. He's always had some health issues too, since he was born. I was a strontium 90 baby but his father was a Vietnam Veteran in the Air Force. His father was considered non-combat personnel. He was on the big C-130s.  Flew supplies over and bodies back. Hit him kind of funny to hear he was non-combat, since he remembered the tarmac being shelled, bullets wiz by, his non combat personnel butt firing back and once a bullet embedded in his flack jacket.

Some of the supplies included Agent Orange and Blue and various colors of the rainbow in barrels. Sometimes the barrels leaked and his father's boots would get wet with these chemicals. His feet and lower legs would break out in later years and look like raw hamburger. But since he was non-combat personnel he couldn't get treatment at the VA for it. Civilian doctors had no idea what to do for him. I remember one doctor saying he could not get anything out of the VA for any ideas either. Lot's of steroid treatments.

You search for answers, because these are weird diseases, that the doctors are scratching their heads. Treatments to continue living are today expensive but solutions can be found.  But such is life and we go on. We are not defeated nor dead YET!! When I get some of this work accomplished, I will post on my blog and I will appreciate a share or two. Plus any ideas out there...let me know!!