Appalachian Heartwood - Our Hearts Still Beat

This is going to be a strange post. While I am up late, just pondering life, I'm keeping the fire going tonight. I always wonder how far to take this blog personally. These stories though personal are of the past ancestors and family mostly. It's always a tightrope on how much to reveal of what is actually going on in my personal present life. Should Appalachian Heartwood blog be only about feel good articles, historical stories, a few political rantings or should it take on more serious personal issues?

Just a pretty picture so I can link to Pinterest. LOL!

It's hard, because though I relish in the past and telling stories of my ancestors and of our area....I'm also living in present day Appalachia and dealing with new history and new issues that effect my family today.

These last couple years have been particularly tough. I know there are more people out there in our same boat. First, my new illness that blew my career to smitherines and now fighting for my son.  For the last year I've sort of changed roles with my son. When I became ill, he took care of me. Well now a crazy illness that we've never heard of is now racking his body and I'm trying, while still dealing with my own illness, taking care of him!!

James and Virginia Hale Stinson

It's why I haven't been writing much. I only have so much energy. Really his condition is quite serious...sometimes it makes the old history and stories seem quite trivial to spend time to even be writing about. But I enjoy going there to the past. Those stories of ancestors take me to another time and I escape this one, if just for a little while.

Our troubles are made difficult because my son is not working now and has no insurance. He stopped one job to take care of me (though he had no insurance at that job either and it was government!) and then had some odd jobs he did to make ends meet.

This illness just jumped on him SO FAST! First he started with a knee hurting and just swelling to the size of a grapefruit for no reason. Then it spread to the other knee and he started losing an unbelievable amount of weight. We would all love to eat as much as we want and lose weight but at some point you want it to stop.  He went from 180 to 120 in like 3 months.  He struggles to not lose anymore weight today and fights anemia.

No insurance leaves us applying for any program that can help.  When it first began it was test upon test. This disease acts like rheumatoid arthritis but his blood work is negative for that. They have him diagnosed with seronegative rheumatoid arthritis. REALLY?.... a weird disease we've never heard of? Suppose to be genetic in nature and it's moved so rapidly throughout his body. If you have to be sick, let it be a weird disease from a screwy ancestor. GREAT!!

In two years it's moved through every joint he has, knees, ankles, wrists, back, hips, he can't even stand up straight and has an elbow he can't straighten out and when he bends over he looks like a giraffe.

His health care revolves around what we can afford and what is available in the free clinic sphere. We've borrowed money from everyone we know. There is a clinic that is about 70 miles away that help him see a rheumatologist. Because he is not working ACA doesn't cover him. We live in Virginia and they did not expand Medicaid. He qualifies for Medicaid but it only covers pregnancy and that is not his problem!!

These doctors and clinics have helped him so much with their sliding scale fee but what we have problems with is medications and treatment!  It's nuts!!! This disease may be able to be controlled and get him functioning again, but not without treatment. We are having a time with that. He should be in physical therapy but affording it and getting him to those sessions is a problem. We focus on medications instead.

The medications are getting ready to change because we've tried the cheapest and it's not working. We are looking at pretty expensive medications, that can go to $1400 a month. We are left seeking medication programs that are disappearing at a rapid rate, because it's supposed by the drug companies the ACA Medicaid part will be expanded in the state. Our state legislature is nuts and behind on that matter.

Right now, I'm not having to worry about that, yet, as he had a gum infection and can't take the medication for the arthritis until that gets cleared up. Getting dental treatment has taken us MONTHS to just get a tooth pulled. He was in such bad shape the doctors I think were afraid to give the ok to have dental work. He just had that work last week and we are waiting to see if the infection clears up, so he can continue treatments for his disease.

So with no options on the state level, he had to apply for Social Security and of course because of his age and their weird judgement, he's been denied. He has doctors saying he can't work like this until he gets it under control.  The agency determining whether he can work or not has never seen him personally and is not taking his doctor's opinions about the matter. The state of Virginia because Social Security has denied him is also denying him Medicaid at another level. To the state one is either disabled or not and use Social Security to say so.

Many of us have illnesses that are disabilities whether Social Security determines it or not. That whole argument that you have to be just about a vegetable to be disabled needs to be changed. He applied for Virginia Rehabilitation Services but has not heard a thing out of those folks either. It's called budget cuts.

Our wonderful State legislature instead of expanding Medicaid which could help him, have introduced a plan now to fund more free clinics.  Free clinics are a blessing but they can only do so much. It is not an answer for treatment nor for comprehensive care.

Let me give you another example of how that fails. Maybe over 10 years ago, I was working at the museum and at that time I wasn't year round full time. It was a non profit and I could not afford health insurance. I had injured my back years before and had all kinds of pre existing conditions. I could have been on disability years ago but I chose to keep working until I just couldn't go anymore. The museum could not afford to insure me.  I was a huge risk even then!!

When I priced insurance on my own, it was going to cost me all of my check leaving me $20 a month to live ON!! And the deductibles were WAY UP there. Insurance was totally out of the question if I wanted to eat and have a roof over my head.

I was on partial unemployment for a few months in the winter every year. I worked a couple days a week until we opened back up for the season. I fell on my way out the door to work one day on some ice on the sidewalk and landed on my right arm. The pain was terrible.

I drove myself to the free clinic 40 miles away. My car was an automatic and even then it was a trip to change gears, and I drove with my left arm. The free clinic sent me to the Emergency room because they didn't have an X-Ray machine and the doctor there was pretty sure I had broke something.

At the ER they did determine I had cracked my wrist bone and my outer arm bone. They sent me back to the free clinic without a splint, a sling.... without anything. Said I needed to see an orthopedic.   The clinic was just astonished they sent me back to the clinic without even a sling and broken bones! It seems the ER treated the patients from the free clinic they sent to them without insurance just a little different. They sent me back to the ER to get at least get a SLING, to put my arm in, while trying to find an orthopedic.

Now mind you, I'm driving a car back and forth with a broke arm and wrist.  All my family members who could drive had jobs they could not get time off to help. One family member's boss said, "You leave, you're fired!", because they didn't have any days off benefits. That's how callous we've gotten in this country.
Getting an orthopedic to see me with no insurance and no money..that was an adventure....one office said they'd see me but needed $1000 up front?  We could not pull together 200 dollars at that time!!

Well the free clinic only recourse was to send me to Charlottesville to the hospital program and orthopedic there.  That's 400 miles away!!  My car ....at that time had some problems. I think it was a water pump and I was treating it with kid gloves until I got back to full time work to pay to have it fixed. NO WAY it would make an 800 mile round trip.

So I did what I had to do. It wasn't a compound fracture, just cracks, so I decided to be as tough as my ancestors who did without. I just wore the splint for about six weeks and didn't use that arm. Thank Goodness it was only cracked.  I prayed a lot and kept working.

The ER visits (and they charged me for both) cost me $1500. Doctor another $300.  I made payments until I got it all paid. I always paid my bills. I had used that hospital prior to this but they had at that time gone from a non profit to a for profit. They were trying to force me to fill out a credit card application to pay the bill. I refused. For nearly $2,000 I never saw an orthopedic and had to beg for a sling. I made income just barely over a year for their poverty program.

I've never stepped foot in that hospital as a patient again and won't if I can avoid it at all costs. The way they treated me with my broke arm, I wouldn't suggest taking a dead dog there. Sometimes my arm with the weather changes hurts. My wrist gets funky from time to time but still works and I still use it. I had an X ray of it since then and it's healed the way it's healed. Now mind you this is long before the Affordable Care Act was even implemented and for those falling through the cracks it's still the same.

Now our Virginia state legislature thinks a free clinic system can provide comprehensive health care for adults and/or the working poor? If they can't provide care for things like broken bones (which we have the technology to mend) or help access medications and treatment for my son to get him back to a healthier state to work....how is this suppose to be a solution?

The free clinics do what they can, and are a blessing, but I don't know what our legislators are smoking. Of course what do they care? They have good state insurance paid by taxpayers and are covered. I'm not seeing where they are earning it with protecting their constituents from a health care system out of control. Behind military spending, healthcare is what we spend the most tax dollars on and still some Americans like my son can't access it, while the rest of us are going broke trying to pay for what we do get. Our lawmakers keep making it worse.

Our story I know is not unusual. Stories like ours are happening all over the state, and the nation. Say what you will about the Affordable Care Act....it does address pre-existing conditions that kept me out of insurance. If not ACA we still need to address the failing issues with our health system and our access to health care.

We are suppose to be living in the greatest country in the world...why are we as Americans having to even live like this?

What is ya'll's horror stories with health care?

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!!