Thursday, December 11, 2014

For Better or For Worse

Today I am fighting a cold--I think I am winning but my husband is very sick and has been in bed for two days.  I am afraid he could end up in the hospital. Hopefully he is getting better, he seems to be sleeping restfully and has been in bed since 7pm last night. Last night, I asked him, "Are you short of breathe"? wondering if he got pneumonia and ready to call the ambulance but he said, "No". By the way, he has absolutely no health insurance and has needed vein surgery for 6 years. We paid cash for him to see a vein doctor who told him he needs a surgery that costs 3,000 dollars upfront. We will never have it.  We have a free clinic here at least in the ghetto we live near by. Can we have a little less suffering in this household for once? What's it going to take?

If luck was doled out in equal measures in this life, both me and him would be due to win the Powerball Lotto tomorrow to make up for all the rest. Every month seems to bring a PROBLEM with a capital P. Some pundits would tell me, "Peep that is just life!" but come on, we need a bit more balance around these parts.  I wish I could help my husband more. You think I like seeing someone suffer so much I care about?

A pox on all the upper middle class and above houses of his bosses that threw him away including the jerk here, who decided to throw us both into the welfare class instead of letting him be a $40,000 a year copy ad writer. That man destroyed us both.  Ah bitterness. Yeah it can eat you up. Remember while my husband has his challenges like every person, just 12 years ago, he had published a book, he had articles in some national magazines on a specific topic, he had what were considered "career jobs" even if lower paying in newspapers. With the anger,  I try to bury it under some bible-reading and prayer, but when I see how sick he is, and remember how he used to be, how can I help it? So many out there get destroying people and tossing them to the curb. It doesn't matter if you work hard. They get their jollies off taking a hammer to the little guy's head.

Two job lay-offs, one by a narc and one when he was an assistant newspaper editor with a supportive boss where the company--a newspaper was having economic failure and then THAT GUY. Three slams in a row, and his career never recovered. I imagine yuppies as evil sharks. They don't give a damn about anyone and certainly not about a man with a seriously disabled wife. One little difference, one little ounce of non-conformity and they toss you out the door to rot. A class division is being formed in America where you see the elite thin professionals with their high tech know-how and bean counter lack of emotions and then everyone else who doesn't "fit".

Right now I am fighting his illness too that gave me an asthma attack last night where I dreamed that I woke up in my own bedroom with the temperature spiraling down to 5 below, and filling with snow and being unable to breathe. Panic ensued but I had my inhalers. Right now my lungs feel okay, but the illness he has seems to have dive-bombed direct to his lungs and it tried it with mine. I already have thrush right now too.  I feel like I am shutting it away through sheer force of will right at this point.

I wonder if my husband took sick, because in one day, he had the court judge against his car accident case, even with a picture that basically PROVES, that the guy who hit our car, scrapped along the wheel well and along the car side before hitting the door that was only open 1 or 2 inches. The judge didn't care, and said, "I always go with what the police decide". Sorry but to me that is one lazy and poor judge.  I was housebound that day and waiting for the doctor, I wish I had been able to go.

The picture was so obvious, we were sure he would win the case. Well guess again, the justice system in America always favors the richer guy. At least in this case, we were fully insured, but I wonder if we have to pay his court fees. This scum bucket waited two days before Thanksgiving and two years to serve us and well it paid off for a suburban guy who lives in a middle class suburb. I am sure he will have plenty of money for the holidays, while we worry about groceries in the house.

You know it's hard. One wants more meaning in their life besides suffering constantly. I asked my husband if he wanted a break from me and the survival slog just to keep a roof over our head and all the care-taking.  I said, this would be a rest, not a divorce because I loved him. He has a sister he could go live with though my options without a family are far fewer. He said he did not want to leave me.  Hey I don't want him to leave me either I am just worried about him.

I had my own ideas that I did not want to end up in the group home or a nursing home. Why is survival so hard for us? What is wrong with us? He is having health problems and losing functionality. We are both scared.  Feeling like the world wants to kick us in the face constantly adds to the fear and angst levels. A loud knock on the door for us means a server instead of an unexpected visit from a smiling neighbor.

 If you love someone you do not want them to suffer feeling this way along with you. My husband married me when I was already disabled, so in this case, he knew of the future childlessness and disabilities. These were not sprung on him though when I was younger we thought my health would improve more.

When my husbands career cracked up, our relationship was under extreme pressure. I wanted to go back to my old community at the time. I worried I was bringing him down with my medical needs. I was upset to be taken back and retriggered to my severe poverty I had in Chicago. We had weird discussions, where once I joked, "Maybe we should not stay married and should each find a functional partner that knows how to survive in this world, and who has money". He has two friends with wealthy girlfriends who go on vacations and don't have to worry about money though one has to do caretaking like him. There is an old song, or saying, "When poverty comes in the door, love flies out the window". It definitely has been a test on this relationship.

When we met each other we fell in love very quickly. I still love him, but lately I do worry. Disabilities are not easy on any marriage. Constant money problems aren't either. You also have the issue of an Aspie and another would be Aspie, where sometimes it seems we will be crushed by some smiling neurotypicals who tell us to be positive and give us a long laundry list of how we don't measure up in the world and are responsible for our own suffering. Sadly in this "positive thinking" world one gets that false positive tyranny spiel. It only hurts people. He hasn't given up, he works on another book deal, does freelance, but the struggle is never ending. His health is to the point that getting a menial job when he can't stand more then 20 minutes from DVT, is just not going to work. He is still in the newspaper field with his articles and name in our local papers though more indirectly via stringer work, but I will say this, he deserved a lot better then how they treated him.

I am old school when it comes to marriage. This is one reason we are still together. My religious beliefs are to avoid divorce. Yes I understand sometimes people do end divorced often through no fault of their own. We are friends and can laugh together. We can have great fun together when our spirit is light and it is a good day.  He knows more me more then any other person. However I have been sad this year watching what he has gone through. It has made me cry these last few years. I want things to change for the better for us. He has helped keep me going and I believe I am still alive because of him. I just wish the world would take a break from trying to crush us. I want us to have some new happy memories.


  1. Peeps, I'm sorry to hear you are having such enormous troubles. Money would solve almost all and that's the really frustrating part. Its so miserable what happened over the lawsuit.

    Would it be better if your husband went on disability too? More money maybe. And health insurance. Of course, I don't know what I'm talking about here. I don't live in the states, here people can sign up for rent geared to their income, I don't know if you have that. I'm sure that you have looked for every possible solution, I just want things to get better.

    And I'm not surprised you husband won't leave you for a rich girlfriend. Men can only be emotionally committed to one woman, and once he is it is almost certainly for life and even beyond that. Women dream to have that, nowadays so rare.

    But I do feel for you and will be praying for you and your husband.

    1. Yes money would fix a lot of things. Well, he did apply for disability in 2009, we had appeal and he was turned down. I think he was getting massive age discrimination and health near the end. They admitted he had some disabilities, but not enough for SSD. It is weird seeing people who do manage to get on. He considers reapplying. The freelance work, can be difficult. Constant lay-offs, short term work, it comes and goes. We could move into disability apt, I have been on the waiting list before and know one day we probably will have to go in but for now, the rent would go up with every extra dime he would make. I am glad he did not leave me for rich girlfriend. :P I believe he is emotionally committed and me too. I know it is rare out there, so do not take it for granted. Especially with all these health problems. Thanks Joan.

  2. Peep, I am so sorry you have to go through all of this. Your husband sounds like a wonderful supportive man who has really helped you and it sucks he is so ill right now. I am praying for his recovery and that he can avoid hospitalization. But things will all work out, have faith.

    The money issue sucks too. The never having enough, the having to obsess over it all the time saps time and energy that could be put to better uses that enrich our lives. Living in poverty is such a drain on the soul. I do think people in power right now intend it to be that way. They want to keep us down where we can be controlled. Unfortunately we live in a very psychopathic society.

    One more thing--please check your email--I have not heard from you. I know you're very busy though. If you're not getting them maybe they're in your spam folder.

    I'll say some prayers for you and your husband.
    Lucky Otter

    1. Yes he has been wonderful and supportive to me. He even stayed up with me last night as I was so sick. I worry about his health problems. His flu from hell got better, but he is still very tired. We both are having extreme fatigue. I am still able to get in shower. I measure that believe it or not as the line on whether to go into the hospital. My fever did come down. Poverty stinks. Ironically I have the best medical coversage then ever, but don't take that for granted. I told one friend how I had to order generic pills from the internet when I was slipping through the cracks before and how I could not afford my inhaler and they had no poor people program either to do so. It gets scary always being short, it is true. We have food now since it is middle of the month but the food insecurity gets scary. At least I have gotten smart about buying frozen stuff and food that lasts. I think they want to keep us down. Lucky Otter I am sorry about not writing you, hope you got my emails yesterday. I get tired. My Aspie brain is one that is very poor at focus. I may write about this but sometimes I will even go on computer knowing I need to send emails and brain is all over the place. It gets worse when I am ill. I told all my friends on FB I know I am failing to keep up with emails and messages. I do suffer from extreme fatigue. I need doctors to figure this one out. It was bad even before this illness move in on me. I drank some lemon water and think I may escape the hospital. Ill be back in bed again after writing on here and answering emails.

  3. Peep, Has he not applied for SSD? I think he'd be eligible as an Aspie (particularly in addition to his other health care concerns as well which would make him eligible) but my immediate concern is you don't let too much time go by before applying: You need to have a certain amount of *current quarters* of work and I don't know how long ago he got laid off from his most F/T recent position.
    How 'bout Medicaid? Has he applied? It sounds like he should be eligible and yeah, I know, finding a health care provider who'll accept it is a challenge but at least he'd be covered in the ER or in the hospital. We're so poor up here I know many people who simply can't pay the hospital and keep a roof over their head, so guess who doesn't get paid? "That's just the way it is.."

    I'm assuming you have SSD and Medicare by now. I've never understood WHY you have to wait two yrs. before Medicare kicks in after being eligible for SSD: If you're disabled, 2 yrs. without insurance is two years of hellacious-and unplayable-health care bills.

    There's a bunch of services/programs it seems like each of you should be eligible for either as a couple or individually. What about Adult Services through your local DSS? I think you may be also eligible for services through your county's Office of the Aging, not because you're old but because you're a disabled adult. They're the *best kept secret in the world* and can really be a great "portal" to all kinds of services: ex: I managed to get a friend with a breathing problem an air conditioner for her place for the summer through Office for the Aging. Her caseworker also fills out all the paper work I use to do for HEAP, SNAP benefits (<I'm HOPING you're receiving those!) and every other possible service/benefit available including greatly reduced co-pays for her meds-of which there are many. The way in which I managed to get her a caseworker through Office for the Aging was kind of through the back door: She broke her leg a few yrs. ago with winter coming on. She lives in the mountains, I'm in the valley so I knew I wouldn't be able to get up there regularly to check on her or help her. My only recourse was to get her a caseworker through Office for the Aging not just for *that* situation but to address other concerns that frankly come with poverty and health challenges. We all have our pride, yk? And she did too: That's why I figured she'd accept Office for the Aging rather than DSS. Having a Caseworker has been fantastic for her (and me too-I don't worry so much.)
    Your DH's symptoms are scary: Some people don't have what we think of as "classic" type symptoms of pneumonia. Just in case I'd be really encouraging him to go to the ER and get at least some antibiotics. I'm afraid you guys are gonna start passing some kind of illness back and forth, yk?
    We ARE gonna figure out ways to get some services and $$ in your lives. None of us control the economy and none of us want to be plagued with disability, illness and/or chronic health problems. Would you consider calling your county's Office for the Aging on Mon. or Tues. Peep? I KNOW you're very smart and capable but navigating through the plethora of services, programs etc. alone is about impossible especially when you just aren't feeling well or are disabled. Having someone, just a single "Point Person" can save hrs. of frustration or simply not knowing what's out there, OK?
    We're gonna figure this out Peep, one way or another; this is unacceptable and I will not stand by and just pontificate that you "must have a positive attitude!"-that leaves me feeling like I just wanna smack 'em upside the head with the Clue Stick yk?!!!

    1. Hi TW he applied for SSD in 2009, DVT etc.

      He is of the age to be discriminated against. When he got older its like they threw him away, you know?

      We had an appeal and they admitted some disabilities but not enough for SSD. I worry now that his years in extended freelance pseudo employment will end up punishing him. He isn't officially diagnosed Aspie. It is in my records and official now, but he was never diagnosed as a child and I had the insurance for more therapists and others. His best friend was told he was an aspie by two therapists and well I found out in my 30s. I begged one therapist to look into it, but he just ignored me. He may reapply but is trying to write a book, and there is a contract, and I think he wants to see if it will succeed first.

      We know we need him to apply for Medicaid. We can't afford Obamacare so are a bit worried about another bill. So trying to walk that fine line. Sorry your community is so poor. This one is rich and it gets weird for us. Just listening to the exotic locales all the people in my self help group get to visit blows my mind.

      I had the years of massive medical bills, too but yes I have full coverage now, which isn't to be laughed at. With all the medications I'm on, it would be scary if I wasnt. I had those days without medicine and they remain in my memory banks.
      Yes the 2 year period, almost killed me. Consider this. I was diagnosed with a few things AFTERWARDS. Medical care for the poor can be pretty poor.

      I know about the office of aging, I have a disability advocate there, I have written. I do think we are getting close where we would need a home cleaner. I do need to talk to them about what I can do since husband is having so many health problems. If he got disability, I could get a home cleaner and aide tommorow. As of now they see him as my caretaker. I did apply years ago and was told because I had a non-disabled husband I did not qualify. continuing...

  4. I am glad you helped your friend. Sounds like you did her wonders. Those in rural areas can have it tough. I have some services I am getting definitely. Having an at home doctor helps a lot and I have had at home nursing care in the past.

    My husband did recover and just avoided pneumonia. I am laying in bed a lot and we both have been in bed, except to get food and medicine, for days. He did make a turn for the better. I am hanging in there praying bronchitis leaves me alone but yes it is scary for someone like myself when a caretaker takes ill especially in winter when I am more helpless--it was a warmer week this week, but next week I will be frozen indoors.

    I need to look into this, because I have full coverage, but if there is some kind of respite care that could come in, the next time this happens. Normal people have families to take up the sway and I have a few friends and a pastor who would help me, but I need to really check into this. It can feel very scary. I will call them and Im going to write my disability advocate and question her about respite care, and what should I do if my husband takes very ill. We avoided the hospital this time but it is something I do have to do more planning about. I do get some services but need to figure out if anything is missing. My husband says he is considering reapplying for disability. He cant stand long enough for menial labor like fast food etc and even the newspapers he is a stringer for have no interest in offering him full employment. He doubts his ability to do the 12-14 hour rigors again especially with the necessity of taking care of me. He makes about what I do on disability or a bit under, on the freelance, but this is hours and hours of work.

    I am worried about him and hope things can improve for him. I will see what we can qualify for. I wonder if there are more things missing. I have ultilized a soup kitchen in the area and food banks as needed and gotten better at shopping for the month ahead of time. He does worry about me if something happens to him. I would not be able to live on my own very easily. I know they have a PACE program here and senior center for when I am older. I think with right supports I could stay out of nursing home. I of course worry about him too. The work world really socked it to him. I hope he can get to a better place too. He needs more caretaker supports too, and I need to look into that for him as well. Thanks TW. I think the positive attitude people are spoiled jerks. They love to use that one as a hammer. They do need a smack upside the head with a Cluestick!

  5. I can tell you with a high degree of certainty why DH was turned down by the SSA: Two wars and the vets were coming home-still are-during the time frame DH applied. It seems everyone-even the people who are totally disabled due to being blown up by an IED-are turned down on the first application. IMO, they're trying to discourage people from appealing-and many people DO give up. I've worked with combat vets most of my adult life and still volunteer with them so I've seen the changes that have taken place due to the most recent wars with the SSA. To be fair let's start with the most fundamental problem: They *laid off a ton of people* at the VERY TIME applications were increasing dramatically-as they were at the VAs and VARO's who also were horribly overburdened. (Remember Dummy Rummy smugly stating, "You go to war with the military you HAVE?" Including a lack of armor etc. for the vets in the field? Disgusting. I regress-sorry.) Typically, it's the third Appeal-where you appear before an Administrative Law Judge-that renders an approval AND the applicant is eligible for retro $$ back to the date of APPLICATION. So many of the vets, if they can hang in there with me or who ever is advocating for them and *not get discouraged* end up with nice, big $$$ checks. (That's a big "if." Some don't survive.)
    I'm telling you this for a reason, Peep: Your local DSS probably has a whole unit that does NOTHING BUT apply for/advocate for people who MAY BE disabled. (What are the vets suppose to do while their applications are pending? Starve and freeze? NO. They apply for PA: What else can they do?) Anyway, the reason for these units or designated people at the local DSS is very clear: Public Assistance of any type is state funded. SSA, however shifts the burden of funding to the Federal Gov't. Now, if I can get my applicants for PA who likely ARE disabled benefits from the Feds, look at how much $$ it's gonna save my County, OK? It's economically in the best interests of the respective county to advocate for/do all the paperwork for/appear with or in place of my client if they're too disabled to physically come to their Hearing and prepare my client(s) for their Admin Law Judge Hearing if it comes down to that. So, that's the reason why County DSS's (at least up here) have dedicated Units to deal with the SSA. You don't have to pay a lawyer-believe it or not, you absolutely CAN DIY and once you get how the verbiage works-key words, phrases etc.-its pretty standard. At this point though, I'd be asking your caseworker for assistance for your DH to appeal/advocate for him, OK? They have the experience to successfully apply the "magic" ;) words/phrases in his application or appeal. Or at least get him a referral to the unit at your local DSS that deals with the SSA. A lot of this can be done by phone or by making a home visit so he may not have to go to their office at all. Remember also, according to SSA law, the disability does NOT have to be a SINGLE medical etc. problem but a myraid of conditions both physical and/or mental that *in totality* render the individual disabled within the SSA's legal definition of "Disabled." Things HAVE changed since his last application as you indicated he now has an "official" Aspie dx. and any other chronic health problems tend to get worse over time. And he may have developed some other new conditions in the interim as well.

    I feel guilty kind of dumping all this on you when you've been so sick, Peep. But when you're feeling better maybe you/DH can get the ball back in play with the SSA with help from an advocate-and NOT an attorney, OK?

    You folks matter-BOTH of you. None of us are "Throw-Away" human beings.