Foovay's Cauldron

scribbles

June 10, 2010

The REAL Social Security

by @ 4:48 pm. Tags: , , ,
Filed under Musing, Squidoo, writing

I was driven to the brink of despair.  We had exhausted our funds and my creativity in creating funds from thin air – something I’ve unfortunately had a lot of practice at and gotten rather good at in my life.  Our friends and family had done their best to help, but none of us are doing so well as to have a lot of discretionary funds to throw around.  We had applied to every government program that might help us – and some had accepted us but the funds simply were not sufficient for our needs.  I had applied for, gotten, and worked at several jobs and been let go from each one for the same reason – most of my time was needed to take care of my husband and to get him to dialysis and doctors appointments.

We were in very real danger.  My husband must have dialysis to live.  We did not have enough money to put gas in the car to get him to the nearest dialysis center – 100 miles away.  In addition – that dependable little car had started to need some repairs, and tags and insurance are due.

I did the only thing I could think of to do – I appealed to several online communities that I have been a member of for some time.

And within one hour, there was over $100 in my PayPal account – contributed by people all over the world who only know me online.

From the time that humans began living in tribes instead of single-family groups they began to care for those less fortunate.  A child born with a disability of some kind often became the responsibility of the entire group to support.  Widows were provided for or taken in by other family members or members of their husbands family or in some cultures the tribal leader took responsibility for their and their children’s well being.

In small villages and communities, if a family fell on hard times the neighbors would help.  They would share food, help plant or harvest, trade or share labor.  There were no formal agreements or expectations – other than when better days came for the recipient they would in turn assist their neighbors should a hard time come for them.   It was simply what people did.

Even as humans began to live in larger and larger groups and communities this spirit stayed alive.  Large cities still consisted of smaller neighborhoods, and there was a feeling of community among the residents.  In fact, you can still find this feeling in some places around the world even in the largest cities and certainly in the smaller communities.

In the 1930s, reeling from The Great Depression, with a population of over 122 million people to care for President Roosevelt created the Social Security program as part of the New Deal.  At the time it included unemployment insurance, as well as provisions to care for the elderly, widows, fatherless children, and the blind – the only disability it covered at the time.  Then, as now, it was funded by a payroll tax paid half by employer and half by employees.

Since its inception Social Security has grown to cover many disabilities, and provides far more than mere support for fatherless children and their mothers.  Some services have been split off to better serve the needs of their beneficiaries, such as unemployment insurance and the food stamps program.

Along the way it became a target for fraud and abuse. There will always be dishonest people who would rather lie, cheat or steal than work for a living.  The funny thing about that is in the long run it is usually harder to cheat than it is to be honest – but try to convince a cheater of that.  Back when we lived in smaller communities – everyone pretty well knew who the thief was and there wasn’t much chance of them getting a hand up unless they changed their ways.  But how can we sort them out when they are sprinkled through a large community?

Social Security and the many related programs, including those run by the individual States and communities, have had to institute all sorts of requirements to sort the cheaters from the people honestly in need of help.  Unfortunately, in my personal opinion anyway, in some cases they have raised the bar until people who are really in need of help are not able to fulfill the requirements to get it because of a lack of transportation, communications, a fixed address, etc. the sort of things you can often lose – if you even had them to begin with -  when you are going through rough times.

Another side effect is that the time between application for assistance and actually receiving that assistance is often so long that the person in need is not able to “hold out” in one way or another.

And that’s where we were at the beginning of this essay.

So, desperate, I sent out a plea for help to my community.  In this case, the members of Squidoo and the smaller numbers of people who follow me on Twitter, Facebook, LiveJournal and so on.  And my community responded.  In fact, responded so strongly that I am overwhelmed with gratitude.

They couldn’t walk over with a warm dish of something for dinner, or drop by with some leftovers for our chickens, or pick us up and give us a ride to the dialysis center in their car – because most of them live hundreds of miles away.  But the same spirit moved them to send as much as they could afford.  Most of them insist that I not repay them directly – but “pay it forward”.   That is, someday when we are doing better the opportunity will come along to help someone out and we should do so with the same generosity and good will as has been expressed to us.  We will.

And that is the REAL “Social Security”.  People coming together to help people.

June 6, 2010

Please help

by @ 6:54 pm. Filed under updates

If you follow this blog regularly, some of this information is redundant. Please bear with me as I need a place to give a full explanation of our current situation.

My husband has had Chronic Kidney Disease since childhood. He was born premature and the tube from bladders to kidneys was not fully formed. This was not discovered until he was about ten, and by that time his kidneys had been irrevocably damaged.

Many people would have just laid down and whimpered and expected the world to take care of them from then on. Not my husband.

He has worked hard all of his life. He devotes himself 100% to whatever job he is doing. We put him through college and he got a great job. That great job was with one of those companies that was so naughty in the 90s and he was laid off without any benefits for the many years he worked long hours and days off on salary to “help us make it and we’ll take care of you”. Despite that, we made the best of it. Moved to New Mexico and eventually to this ranch we love so much and he took another job – a hard physically demanding job in spite of his physical condition and his age (40) and gave his best to them working many hours of overtime and during times when they were extremely busy and short handed.

In January his body finally gave out. He was diagnosed with ESRD – End Stage Renal Disease. He still forced himself to work part-time until March, when surgery to install a fistula for dialysis (which failed) made him unable to use one arm. We applied then for SS Disability.

I began seeking a job outside the home. It is because of the wonderful support and caring of this man that I have been able to pursue my own dream of making a living with my art and writing through the Internet. I’ve never come close, but he’s never complained or recriminated at me for my endeavors – instead always encouraging me to continue to seek out new avenues to create an income from my work – or tell me just to do it for the sake of it, never mind making any money.

It is because of him that all of you have had my writing, my free public domain clipart, my free printable coloring pages to use and enjoy.

In May his kidneys finally completely gave out and he was hospitalized for kidney failure, as well as a heart condition caused by the kidney failure. They finally began dialysis with a catheter since a fistula will not take and now he is not healthy enough for the surgery to attempt another.

We are now taking him 100 miles to the nearest dialysis center three times a week. Most weeks he also has two or three doctors appointments so that we are driving that distance almost daily. He suffers from mental confusion – a symptom of ESRD – and exhaustion – a symptom of anema caused by the ESRD – and is not able to drive, thus I am needed to drive him to dialysis and doctors.

Although we applied for his disability in March, SSD says they are still “considering it”. Until they make a decision, either to grant or refuse it, we cannot even have a lawyer dispute it.

Mind you – the dialysis center applied about a month ago for his medical insurance to pay for dialysis through SSD – and THAT has been approved.  And believe me, I am grateful for that – since they were already asking how we intended to pay for dialysis.

We are receiving food stamps. Last month we were approved for a minimal assistance payment from the state – about enough to take him to dialysis for a week.

I have had three jobs. I’ve been let go from every one of them for the same reason – I need three to five days off a week to take him to doctors and dialysis.

We are still on the ranch, on the sufferance of our friend/landlord/roommate who has not received a penny from us for bills or rent in months. Thank goodness, for it is the one place of peace and serenity we have. I think without it, my husband probably would have given up months ago.

And just when I really needed it the most, my tiny little Internet income has completely tanked. My Google income for May was $23 – and since you have to build up $100 to get paid I won’t even get that.

It costs about $20 in gas per trip. Our poor little car desperately needs brakes, the tags are expired, and our insurance will expire the end of this month. We currently have $24 and 3/4 tank of gas. That will get him to dialysis three more times if I am real careful.

My husband will die within a few days of missing a dialysis treatment.

We have no income and no prospects of any income until the first of next month.

I can create artwork – either “real” artwork such as portraits in pastel, acrylic, colored pencil – or any kind of digital artwork such as clipart for a website or a line art for a crafts or sewing pattern. I can write an article on any subject you need. I will sell you any of my art or websites or Squidoo lenses. I am looking to sell my sewing machine and my precious beloved kayak.

The domain for Color-Your-Own.com expires the end of this month. I can use that $12 to either take my husband to dialysis one more time (almost) or to renew that website that is currently only making $20 a month despite the fact it gets about 30,000 visitors monthly. I don’t plan on renewing it. In fact, it is quite likely that I will not pay the $9.95 for hosting the end of this month. I simply cannot justify paying to give my work away at this point in our lives.

If you have used and/or enjoyed any of my writing, my clipart, my line art, perhaps you can make a donation to help us. I will endeavor to pay you back when/if he gets his Disability.


Thank you

Summer Fey Foovay

May 22, 2010

I am Impatient

by @ 12:56 am. Tags: , ,
Filed under Musing, rant, updates
impatiens paucidentata

impatiens paucidentata by Guérin Nicolas

I am impatient.

I suspect many people think I am very laid back and serene – and I am in many ways.  But once I’ve made a decision or a plan, I want it to happen NOW.

We have decided to switch the hubby from hemodialysis – which seems to be causing all sorts of problems with his blood pressure, clotting, heart, intestines, anemia – not to mention that the fistula surgery did not take.  There are other reasons, too.

So we are going to go to home peritoneal dialysis.  So I want to do it.  Now.

But nothing is NOW with these medical folk.  Three or four weeks, or longer.  He has to be cleared by the cardiologist because of the heart problem, which was caused by the toxins in his blood getting so high when his kidneys completely failed but we could not get him in to the doctor more than a week after it became clear to me he was dying.  THEN it was RUSH RUSH RUSH to the hospital RIGHT NOW (as if I had not been calling every day for two weeks saying – he is failing).  *rolling eyes*  The heart problem vanished the moment dialysis began.   We all know it was caused by the kidney failure and that it was resolved by dialysis.  But the doctors have to cover their ass – and be sure to share the Medicaid wealth, too – so nothing will do but we get cleared by a cardiologist before we go any further.  THEN we’ll need the new catheter – out patient surgery.  THEN we have to wait three or four more weeks for it to heal.  THEN we have to be trained to use it.  THEN …

Meanwhile, not to whine, but the financial situation truly is dire.  Hubby has not worked since March – when the first fistula surgery rendered him unable to use one arm.  Can’t cook with just one arm in a commerical high speed kitchen.  But no social agency seems to think that is a disability.  His boss did.  He did.  He had could not do his job and had to  quit but no one will consider giving us aid until dialysis starts. Call us when you start dialysis was all anyone had to say.

We did.  Oh, now that dialysis has begun they will consider it.  Tap.  Tap.  Tap.  Yep.  They’re considering it.  Tap. Tap. Tap.  They are gathering information from all his doctors – just in case he was trying to fake complete kidney failure (which is diagnosed by rather irrefutable blood tests) and is only doing dialysis for the fun of it.  Tap. Tap. Tap.  “OH” all the Dr.s told us – “Disability is automatic for ESRD patients”  He has been diagnosed with ESRD since January.  It is May.  We don’t have any disability.  Tap. Tap. Tap.

The social worker finally got around to doing his psych evaluation at the dialysis clinic.  When she started asking about our financial situation – she ended up with her jaw on the desk.  Picking it up she asked, “What are you living on?”

A wing and a prayer.

I got the Census job – and was able to work four days over three weeks between their needs and his medical needs.  I just called and I still have the job – they just don’t have any work.  However, because I am down as working full time for the Census, I don’t qualify for any aid.  I have no income.  But I don’t qualify for any help.  Hubby qualifies through the State for… a bit over $200 a month.  This will not actually pay for all the gas to take him for dialysis 100 miles away 3 x a week  – just dialysis, never mind the doctors and surgeries and anything else.  We are getting a bit over $300 in food stamps, too.

Don’t get me wrong, I am more grateful for that little bit of help than you can imagine.  I’m even more grateful for our roommate/landlord – who hasn’t gotten a dime towards our half of the expenses here in months.  He isn’t rich.  In fact, one reason we are here is because he needed the money.

When hubby had to leave his job – just as we got his last paycheck I got a job cleaning at a motel.  While doing that I got the Census job and just about the time the motel decided they didn’t need me anymore – I got to work a couple of days for the Census.  And then one day the next week.  And one the next week.  Literally the day before I got my last Census paycheck this week, we got the news and the first payment from the State.  We can keep getting him to the doctors and dialysis at least until the end of the month.  The Universe is taking care of us – but it is close to the bone.

I know the Universe will provide.  I know my vision of a life where we can pay our bills and travel and be free again without a daily doctor or dialysis appointment will come.

But I’m impatient.  I wish it would happen right NOW.

I’m sick to death of just barely surviving.

Hubby feels much better.  That’s the most important thing.

Quite likely I’ll get another 20 years or so out of him if we can get everything worked out.  Who knows, in 20 years they might be cloning new kidneys from your own cells so you don’t need all those anti-rejection drugs or waiting for a donor – or maybe they’ll have some micro-dialysis machine they just install right into your belly to work just like real kidneys.

***I wonder how on earth people who really are single, who do not have family or friends who can or will support them manage to survive at all in this kind of situation?

*If you’d like to help there is a donation button around here somewhere. Or you could shop on my Squidoo lenses, or at my Zazzle store.  You could use and share my , free public domain clipart, the fairy stories at demented-pixie.com.  One note – don’t bother buying my novel – the publisher swears not one single copy has ever been sold and pays me no royalties whatsoever.  Most of all – keep sending your good thoughts, vibes, prayers, etc.

May 19, 2010

Burrowing Owl

Burrowing Owls

Burrowing Owls

Since I am not allowed to be with my husband while he has his dialysis, and he has it at 5 am three days a week, what I do is toss the sleeping bag in the back seat and have a nice nap in the car while he dialysizes. Usually I wake up when it gets light, about 7 or 8 am. I roll up the sleeping bag, back out of the car, have a good stretch, and usually take a walk. From the back of the strip mall like complex of medical services buildings I could see a wide open space with a nice gully and brush – but I only figured out how to GET to it today.

I enjoyed following some game trails. From the looks of it, there are pronghorn antelope, rabbits, coyotes, and doves as well as other birds living in this little wild patch in the middle of the city. I climbed a ridge to figure out how I could get back around to the complex and noticed a meadowlark sized bird flying in low circles. He was quite stocky with blunt rounded wings and almost no tail at all, and there was something odd about his head. When at last he landed no more than 100 feet from me on a rock I was able to see that he was a small owl – with the typically large, rounded head. He was, in fact, a burrowing owl doing what they do – standing sentinel over the burrow they have claimed.

I stood very still and was rewarded by being able to observe him as he stood on his rock for several minutes, turning his head, raising and lowering it, trying to get a really good look at me and decide if I were friend or foe.

As I walked back to the car I also got to see a young Roadrunner, dashing around the parking lot.  I hope he learns about cars and people soon.  They can get quite friendly and casual about humans, though.

So – now that I know how to get down there, I am thinking that the next dialysis day I may drive the little car right down into the brushy area and park right after I drop hubby off. Never know what I might get to see in the very early morning hours as the sun rises.

The Census has not fired me – but they haven’t called me to work in a couple of weeks either. But, since I am “working full time” when we were finally awarded the General Assistance from the State this month, I was totally left out and we received about half what we had hoped for. To tell the truth, I am not going to worry about it – at least we now have food and enough $ for gas to get to dialysis (almost).  I’m sure the people in charge of making the decisions would find it very easy to live on less than $600 a month for two people, since they expect us to do it – and get him to dialysis and Dr.s appointments and surgeries 100 miles away and work full time, too.   It would be nice if I could keep the car insured, too – but, well, we just do what we can. I have one more check coming from the Census and will spend some of it on ink for the printers so I can make up some flyers offering cleaning, poop scooping, and I think perhaps shirt ironing. That is so much more worthwhile in the world than art and writing :D never mind taking care of and supporting my husband. *shrug*

My dream is that my websites, like Color-Your-Own.com and my Squidoo lenses will someday take off and earn enough for me to truly stay home and care for the ranch, the house, and my husbands needs. Better yet – my newer novels go to a real publisher and I actually receive the royalties I am due – in a great enough amount to live on. Hey – it could happen. I’d really love to win the lottery – which is probably more likely ;)

Seriously – I’ve been winning a buck here and there for weeks. I’m due a big win!

The photo of the owls is not mine, but is from a fantastic public domain resource The National Digital Library which consists of photos taken by government employees (mostly Fish and Wildlife Service) so they are therefore in the public domain. It’s a fun site to just browse if you love photos of birds and wildlife.

There is a perky little Cassein’s Kingbird that has flown up and landed right in front of me at the window several times. I think she would like to be mentioned in the blog, too. So there, she is mentioned. I checked but there isn’t a photo of her on the website I just mentioned. It is dusk outside, so our camera is unlikely to get a good photo – even though she has posed most cooperatively several times now.

I finally lucked into a lovely jasmine plant the other day. Actually, she seems a bit worse for wear and was the one and only jasmine when I found her. I couldn’t leave her there in the store all alone like that, looking bedraggled – and I wanted one anyway – so she is sitting on the porch waiting for me to find the time to get her planted. I’m going to put her on the back porch railing right outside the window where I can enjoy her in the evenings and nights when I’m sitting here at the computer. Hubby tells me our one little thai pepper plant is setting buds. The barn kitties are up on their little feets, out of the box, and exploring the barn.

Life is good.  Once again the Universe has provided enough to keep body and soul together :D

May 16, 2010

How NASCAR lost this fan

by @ 10:15 pm. Tags: , , ,
Filed under cool stuff, rant

Some years ago when NASCAR was so very proud of their “major network contract” this life long fan discovered that although I had planned my life around “speed week” the major networks had planned to show BASKETBALL rather than the Bud Shootout, the (then) Busch series opener race, etc.  Tweaking for racing to watch I started watching SPEED channel – a channel I had subscribed to just to get more NASCAR coverage back before NASCAR decided to fuck all the little cable channels who had supported them to such popularity.  Anyhow.  Watching SPEED that year I got to see…

WRC Rally racing

They race in the rain, in the snow, in storms. If a car rolls off the track, fans help upright it and roll it back and the team continues the race. I’ve seen these teams continue with only three wheels on the car, and with an engine that is actually on fire (“it was still running though”). Best of all when the race is over and the winning driver is interviewed he does not say (by rote): “I have to Thank God, My Family, and Thanks to all my sponsors” – followed by a list of 50 sponsors. Nope, still gasping for breath, often drenched in champagne, he says something like “Whew, I didn’t think we would make it. We messed up here and there and then so and so got ahead of us on time and it’s just luck and hard driving.” Sometimes, they even use four letter words. Out loud. In front of the crowd.

It’s a he-man sort of sport, but there have been a few women drivers. The media doesn’t spend all day interviewing her or following her around for a glimpse of her ass in a fire suit or talk about her pretty hair or who she’s fucking. She either drives hard enough to win or doesn’t. She is just another driver.

WRC is racing. RACING.

NASCAR is … mostly billboards on wheels piloted by company spokespersons.

WRC is no longer on SPEED channel. I paid for a subscription to their website that allowed me to watch live video feeds of the race for a couple of years. Fortunately, that is now free. You can watch it on YouTube, as you may have guessed. I don’t know why you’d waste your time with the five hour continuous commercial that is a NASCAR race when you could watch REAL RACING.

That is all.

May 8, 2010

Shout out to my pal Sandy Spider and a rant

by @ 12:40 am. Tags: , , , ,
Filed under Zazzle, rant

An artist pal of mine we call Sandy Spider has started a new blog to spotlight her own and others creations at Zazzle, Sandy Spider’s Gifts. She is a wonderful creative person and I’m sure you’ll love what she finds to share from the wide world of Zazzle gifts.

We are still hanging in there. You may have heard the saying “like herding cats” – well, getting doctors, hospitals, clinics, insurance, and social services, not to mention my maybe employer (I have been fired for excessive absences with husbands health and then reinstated) to do their jobs and cooperate with each other and their victims, I mean, patients and clients and their families is more like herding cats on meth. I just about get them all in the pen and then discover I missed a stray or two and when I turn back to get them the rest leap out again and streak off in different directions.

Our health and social services here in the United States are set up to tear families and couples apart, keep us in poverty, deny us services, provide medicine for profit – which has no relationship to “healing”, and with any luck to kill the chronically ill or disabled as soon as the government has been drained of every possible penny for their care. Their employees are taught to manipulate through guilt, insult, and humiliation – although some would do that for free just because it makes them feel superior.

Doing the “right thing” we are all taught to do – go to school, get a degree, work all your life, love and support your spouse and family – are no guarentee whatsoever that in the end “your country will take care of you”.

For ESRD and CKD patients – be aware that your SSD is limited and you may or may not be eligible. Be aware that the “don’t worry, the U.S. government pays for all dialysis” is a lie and that AFTER you begin dialysis, and after the clinic has separated you from your family, spouse, and support systems THEN they will tell you that you must pay for your dialysis. The alternative is quite simple, of course. You. Will. Die.

For the spouses and families – after the clinic cuts you out of your beloved’s life by refusing to allow you access to the doctors or other care givers or information, social services will force you to work full time – and then use that as an excuse to remove all benefits including health insurance for all of you. This, of course, can mean that your loved one cannot get to dialysis or is left sitting for hours at a time waiting for some service to maybe take them part of the way home where they can wait outside in the weather for you to get off work and pick them up. The point is, of course, to get them to die. Then Social Security and all the other social services can keep all those dollars you put in, half of your income, for your working life. Hah. Hah.

You will be expected to be at the doctors, clinics and hospitals disposal 24-7. They can set an appointment at any time and then make you wait hours, even days. They can set an appointment, fail to provide the service, and move your loved one to the hospital without telling you, setting an appointment for surgery or other treatments. If you dare to say, “We cannot make it because we are out of gas, or because I have to work (GOD FORBID)” the doctors staff will sneer at you and say “you do not care about his health”. This from the people who delayed dialysis until he was near death because the surgeon hadn’t got his bucks from an extra surgery or two yet. The cardiac doctor who makes people wait days and days in his office for his convienence and then accuses you of not caring and endangering your spouses life by refusing to wait a THIRD day in his waiting room. I’m sorry, but if my husbands life is in immanent danger from a heart attack, shouldn’t we be in the hospital on a monitor instead of sitting in your waiting room for three days running?

Social services who refuse any benefits unless you do a job search. Insist you continue the job search even after you have found a full time job because you have to do 20 applications even if one of the first three hires you. And then threaten to terminate benefits since you are working – before you ever even get your first paycheck. Meanwhile, I’ve managed to work one day a week for three days and call in the rest of the time because I’m taking hubby to the hospital, hubby is in hospital, hubby has to go to dialysis, hubby has to have surgery and guess what I am fired. Duh. I DID mention to social services that I could not work full time since I have to transport and care for hubby. But they insist I can work full time and just let him use public services to get to the doctor, clinic, hospital from a ranch 25 miles out in the desert that no service will drive out to.

Although I have been reinstated I doubt it is going to last long. Hubby still has dialysis after all. He is still using a catheter since they fucked up both fistula surgeries and waited until the last minute to start dialysis. Those last, we hear, two days to two weeks so we’ll surely have to have it replaced soon – a full day at the hospital while the “first thing in the morning” catheter inserting doc gets around to him at 5 pm (a full day of fasting and no water for the kidney failure patient). He is already on his second catheter in less than a week.

We canceled the evaluation for kidney transplant when the institution in ABQ decided they wanted two days for testing instead of one. Of course, since we are independently wealthy (they seem to think) driving up, eating, staying in a motel, eating, driving home – that’s no problem, right? Oh yeah – I’d miss work those days, too. Ooopsie. Well, how DARE I put work ahead of my husbands health. Yeah, I agree, I think my husband is far more important, but social services figures he can just walk or ride the bus to the hospital or clinic because if I don’t work I’m a lazy scumbag. If I don’t take him to the Doctors, because I have to work, then the Drs say I’m a cold, uncaring bitch. But once he is in the dialysis clinic, they want me to get the fuck out.  I am certainly not allowed to be involved in his care or health decisions, not allowed to see his doctor with him, or the social worker, or the dietician – what the hell would I have to do with any of those people.  So I’m either a lazy scumbag or a cold hearted cunt or “just the chauffer”.

All this time, I thought I was a devoted and loving wife.

Who knew?

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