Wednesday, April 15, 2015

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 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 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 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 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?