Saturday, August 2, 2014

How it Really Is.

Yes, It's Finally Come to a Loud Scream.  Do not read this unless you can face other people's problems, but this is our reality for the past 7 months. I wanted to delete all the personal posts and not whine, do not mistake this for a whine, these are the Facts.  I've done the smiling and nodding thing and 'we're doing fine' thing for months now and it's not convincing ME any more.  It's getting better, but IT'S GOING TO TAKE TIME.  That's WHY I've dedicated this month to catching up with ALL the orders I have on the books, I want this OVER WITH!

I know I keep saying no more personal posts, but then I get people asking how things are going or wondering why I'm not chained to a sewing machine 24/7.  Why I've been working on the 'simple orders' as fast as possible to keep our bills paid and putting off the complicated ones until I stop shaking and I'm not so over tired I sew over my own fingers. I can't stop working because this pays our electric, our phone (and internet) and our car insurance, gasoline and barely some extra food that the food program does NOT cover.  We have EBT and Rent and that's IT.  We are not rich, never have been, and if we loose my work, we're on the street in weeks.  We might not starve to death, but sitting on the curb dying of exposure or being predated on by criminals and crazies is not my idea of a camping trip!  We're citizens, we're at the back of the damned line for any so called support system in California.  You have to be absolutely homeless for six months before you can even get into a real shelter for 'nice people'.  You go through all the mazes and turn in all the papers and when you think it's finally OVER, you get another letter saying you're going to be cut off if you don't X or present Y or what ever and damned if the letter wasn't sent 8 days ago and you have "10 days" to respond!  All our savings had just been spent on getting our car fixed the month before the stroke and that was WHY my husband was working despite being down with near pnumonia, to recover our one month buffer money.  Business had been very bad last year for the company he worked for and we didn't even make enough money to file for taxes!  And because of my husbands current condition, I can NOT leave him alone for more than a few hours to even dare get a part time job if there even were jobs for a non-spanish speaker in my area.  I had planned to move north to deal with companies who need French/Japanese business speakers, because I KNEW there were no jobs in this area for ME.  That's why I went back to college and got a degree.  I've done my part, I've prepared, I've saved, I've handled things, I've done everything I should do not to be a 'looser' and my husband has supported us and worked hard for years and been proud to do it.

The fact is, no one expects to have this sort of thing happen.  You don't Plan for it.  You can plan for your house to catch on fire, or an earthquake or even a car accident by practicing and getting insurance.  You can't plan for things like a sudden devastating medical emergency, even with insurance, which we did not have.  You can't plan for a boss that doesn't put the social security money where it belongs so you have to fight with the government for food, housing, and medical support that everyone else but you at the time seems to be 'entitled to'.  You can't plan for the emotional damage, the shock it puts you into to have someone you love laying there having come so near to death and facing the fact that yes, we ARE mortal.

It takes time to recover from not only for the person who has the medical problem, it takes a totally inexperienced partner in life time to get used to all the new burdens.  Some of us don't have the experience of taking care of an elderly parent as they fall apart, some of us don't have years of raising kids, and yeah a hell of a lot of us are NOT trained nurses.  And it's definitely NOT the same as babysitting someone's little kids.  In  my case it's been dealing with a perfectly healthy active man who damned near DIED one night and thank god, lived with no mental damage, despite a brain hemerage and helping him recover while trying my best not to 'baby him' or reduce him to anything but a man who just happens to not be able to use half his body any more.  People started talking to him in a loud slow voice and he's like, "What the hell is wrong with you?"  They talk over his head and ask me how he is.  We can't afford a nurse and I've dealt with IHSS, and it's not pretty.  These are total strangers with NO NURSING TRAINING what so ever.  They just pass a test showing they know how to fill out the damned hourly work forms and not scam the government, it's nothing to do with actually being TRAINED to care for someone.  I have to cut up his food for him, he can only use ONE HAND, he can't just get up and get something himself, he can't do much of anything, really, and it's frustrating for BOTH of us.  I have to think, think, think, how to rearrange the house, my thinking, everything so that he doesn't feel he's 'crippled and useless'.  I have to get his wheel chair, which weighs a good 55 pounds, in and out of the car, and it HURTS my back still, despite the breaking it down part which takes a good 20 minutes to do every time we go somewhere. It's work work work work WORK all day for a person used to spending no more time doing physical labor than any normal office worker with a 20 minute exercise routine a few days a week.

So the past few weeks have been exhausting like all the months since December 3, 2013 at 2:30 am when I found him on the floor of the bathroom and had to push the door open with a 190 pound man behind it who couldn't move himself.  The physical therapist we have now is a DOCTOR, who deals specifically with neurology, she was trained on the money Christoper Reeves left for the research on spinal damage.  She's had my husband up with a quad-cane, working with him to move his leg even though he still can't feel a thing.  Yesterday he went outside and walked around for a good 30 minutes, with me following him with the wheel chair.  30 minutes of just walking around for a man who when he was released from the first hospital was told "It's over" by people who I guess just didn't want to get his hopes up.

Until you've been there, don't think it can just be shrugged off, or dealt with, or medicated for for the care giver.  I've had to fight for everything, they don't just hand it to you even with the medical paper work.  I've had to find and move us to a new flat with the management demanding more and more money for deposits ONCE THE CONTRACT WAS SIGNED and they had me cornered because they knew we were desperate to stay off the street.  We were trying to get insurance from October on, but the stupid site didn't work and then we were caught in the change over that all the medical insurance places them selves were not ready for.  I had to file for 'food stamps', something I've never had to do before.  Then I had to deal with them getting cut off constantly month after month until I found out you go down and get a RECEIPT for your paper work, because they will 'just loose' your documents and paperwork.  We nearly lost his SSI because he had some piddling little 'retirement fund' thing from when he was 17 and working for Pizza Hut as a part time driver. 74$ that disappeared in banking charges years ago, but the paper work was there and apparently we 'lied' about something we didn't even know about. I spent last month packing to be homeless until the company that now owns Pizza Hut got back to us with the paper work proving the 'retirement fund' no longer existed.  I've had seven lawyers tell me they can't do anything about our case for the missing years of social security deductions because "the guy will just disappear over the border" as one lawyer put it.  "It's not worth it".  I keep our car in a garage now that came with the flat so that it doesn't get wrecked over night by his ex-boss being an ass hat, and I dread coming out of the store to find it gone.  And to top it off, we have to come up with money, money, money to fix the truck for the smog check even with the CAP program.

Getting insurance has meant finding out I'm not just 'tired', I've got a thyroid problem that causes everything from nerve damage to going bald.  I've got a doctor who's voice mail is "full" all the time and won't order the tests she said I need until I go down in person and pound on the counter.  I'm ready to just sit in the middle of the street and scream most days.

But yesterday my husband walked slowly around a courtyard with a cane for 30 minutes.  He had to nap for 3 hours to recover enough to have a very late lunch after that.  We have paid the rent another month.  I will be able to pay the bills this month and get the car fixed, I THINK this month, you never know with mechanics.  >.<;;

I want my sewing business to succeed, but take into account all the stress all the uncertainty all the on going absolute bullshit I have to face day after day of not knowing what the government is going to do to us, and whether or not the increased PT is going to give the hubby another stroke, and not sleeping nights and dragging through days.  Please.  I've wanted to do this for months now, but this time, I'm not 'saving it for my head to clear' I'm not hitting delete because it's personal.  I'm posting it and getting back to work trying to live a normal life, as well as sewing for our living. 

I'm not going to even discus this post with anyone, it's out there and done.