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This week, and for a few weeks, we will have a lot of time to discuss the realities of ACA.   How it works, how it doesn't work, things that can be changed to improve it and what work still needs to be done.

About two weeks ago, I posted a diary about our cost of medication prior to ACA for our son; I was contacted by someone who read it as well as a much older diary I had written, and had asked me to write something up for her, on what healthcare really is like prior to ACA.   Because she doesn't want her real identity known, I've changed just the name and a location, but the rest is 100% truthful and based on a set of interviews we did over the course of the week.

I'm writing this much more as a narrative, but I think this story really helps explain why the health care system in America had to change.  It also reminds us how bad it was - and why we should never go back.

Please note: the person in this story is NOT me, but just a friend through here, therefore, it is written in HER voice.   Thanks ;)

Jennifer's Story

When you are young you want to believe you are indestructible.  Minor ailments to real illness don't shake you because that voice inside your head keeps telling you that it will pass and everything will be OK.  I was 21 years old, attending a good university working on my Pre-Med degree.   As much as I wanted to believe that I was indestructible I also knew something wasn't right.

I started having migraines, intractable vomiting, nausea, nerve pain, muscle pain, joint pain, dizziness, weakness, and fatigue.  I knew that something was wrong, but I felt I could power through it.   I was 12 credit hours away from completing my Pre-Med degree, and I could see the light at the end of the tunnel.  My body, though, didn't care about how close I was to a diploma and every day that went by I felt worse.

I began missing classes, and I was forced to take myself out of classes, knowing my health wouldn't let me attend enough to pass.  But you can't take incomplete on all your classes, and classes I couldn't attend went from Incomplete to Fail, because I wasn't there.

At about this same time period, I began visiting doctors to figure out what was wrong.  I was first diagnosed with Lupus, and about 6 months later my disease progressed to start threatening my organs.  The failed classes I was unable to attend cost me my scholarship at my university and I felt as though I had little time left but to fight for my life.  

Once my organs were threatened and the illness progressed, my diagnosis was changed to a slightly different disease called Mixed Connective Tissue Disease (MCTD).  

At this point, despite illness I was compelled to find any kind of full-time employment.  My parents could not cover me on their health insurance. I had maxed out the policy at the student center and I needed more specialized care as the autoimmune disease did Sherman's march through my vital organs, tearing down lungs at one point, heart valves at another, and kidneys at yet another.   I was sick.  I was broke.  I worried daily that I was a burden to those I loved most in my life.

I had been dating my hubby for almost 5 years when we got married. I worked full-time for the benefits, but I was always in trouble because I took off more time than I had coming to me. Eventually, John had to give up his pursuit of building a professional photography studio because with me being in and out of the hospital, injecting chemo drugs into my legs, etc., I just could not be the one responsible for carrying my own health insurance... it was important for him to find work that would cover me.

So here we are: I have not finished my degree even though I will never forgive myself if I don't. I deal with the ins and outs of insurance several times a week, trying to convince them that they would be better off paying for expensive medicines than hospital stays, and trying my best to live my life.  I've had 14 surgeries since my diagnosis and it is likely I may face more.

So what does something like the ACA mean to a person like me?  How would my life have changed if I could have been on my father's policy until I was 26 or if I could have qualified for health insurance? Could my husband have had a happier career than the 'pays-the-bills' job that wears him down?   I think of the dark knights we pondered what would our insurance pay for?  What would we do if his job went away?   And how can we treat my illness and stay below the limits that would leave us in financial ruin?

What if my husband's next job would offer no insurance?  What if I couldn't get the treatment I needed under the policy or the limits were low?

My husband pays in and gets barely anything out of it, but I really need it. ACA would have made such a difference in my life. And I hope it will make a difference in the lives of the generations to come. Because no one should be so close to a degree and have to quit. No one should have to give up an entrepreneurial dream before it's given a chance just because they love someone who's sick.

I disclosed all of this to you because you were brave enough to write the blog about how ACA will help you and your family.  It is too easy for people to say bad things or think bad things of those who will benefit.  I don't feel like I can come out and say it publicly because I do want to go back to work eventually and my name is too unusual for me to get away with it. If I were to chose a pseudonym under which to disclose my story, I wouldn't have an audience. I wanted to let you know this, in case you are tired of hearing people say - well, yeah, maybe it'll work out for you and your kid, but what about the rest of us? I am part of the rest of us and I think there are a whole lot more stories out there of lives that could be better after ACA.

I wish sometimes I had known sooner, earlier.  And better preventative care may have helped.  If more healthy people get insurance and take care of their health they might have a better experience.  

Before ACA, we were all on "Emergency Room" care.  We were sure to go if our life was on the line, but we worried about if we could go just to get good advice or help.   This is just a first step, but it is a good one.  

When people say: who benefits, I have no problem saying people like me benefit.   And, I'm sorry, I don't feel guilty about it at all.  My only other option is to give up the fight and embrace a disability that would kill me without great treatment.   And in a struggle for my life, for my friends, my family and my husband I love I can't be ashamed about wanting to survive.  I consider it very pro-life of myself to feel that way.

KosAbility logoKosAbility is a community diary series posted at 5 pm ET/2 pm PT every Sunday by volunteer diarists. This is a gathering place for people who are living with disabilities, who love someone with a disability, or who want to know more about the issues surrounding this topic. Our use of "disability" includes temporary as well as permanent conditions, and small, gnawing problems as well as big, life-threatening ones. Our use of "love someone" extends to beloved members of other species.

Our discussion threads are open threads in the context of this community. Please feel free to comment on the diary topic and ask questions of the diarist, and also to ask general questions about disabilities, share something you've learned, tell bad jokes, post photos, or rage about the unfairness of your situation. Our only rule is to be kind; trolls will be spayed or neutered. If you are interested in contributing a diary, contact series coordinator postmodernista.

Originally posted to KosAbility on Sun Oct 20, 2013 at 04:00 PM PDT.

Also republished by Community Spotlight.

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Comment Preferences

  •  I have thought a lot about my brother the past (27+ / 0-)

    few weeks. And while I wonder if the ACA had been passed a little earlier and had gone into effect when passed, it still may not have been enough to save his life.

    But at least it would have given him a fighting chance. If he had to die, he could have done so knowing that he had tried. But to die the way he did, not able to see a doctor when he first suspected something was wrong, waiting until he had a heart attack in the ER before he could get any help from a medical system not set up to provide primary care through the always available emergency room that our Republican friends tell us is there for any all need it.

    And for all of the joy I feel for so many Americans that will not have to face his hard choices, there will always be that little heartbreak, that small sadness for what might have been.

  •  so sorry to be late- (15+ / 0-)

    Dad called to have one of those 'you need to (fill in the blank)' conversations.

    Thank you so much for talking about this and sharing information.

    Writers always needed and welcome!

    Anyone who scoffs at happiness needs to take their soul back to the factory and demand a better one. -driftglass

    by postmodernista on Sun Oct 20, 2013 at 05:03:00 PM PDT

  •  It's frightening (22+ / 0-)

    to have a chronic condition and no insurance. With the implementation of ACA and expanded Medicaid in Delaware, we will now be able to have coverage. I'm watching my joints begin to deform, and I'd love to see a doctor tomorrow, but waiting just a few months is doable.

    Thank goodness I have a slow course.

  •  My husband's policy will cover him and (18+ / 0-)

    up to 10 children. To put me on it would cost around $600 dollars per month, which is not feasible. In the past 5 years, I've had 3 hospitalizations- gallbladder removal, a respiratory emergency that turned out to be pneumonia, and chest pain that turned out to be stress related.

    We've paid what little we could, but won't ever have a hope of paying it all; in fact, I've given up trying and don't even open that mail anymore. I would love to be the responsible person that I used to be, but I'll likely not ever hold a job again given the diagnoses and cognitive deficits, and it would be nice not to feel like a deadbeat in the event that medical care is necessary.

    It really shouldn't be something to feel bad about- wanting to survive.

    Anyone who scoffs at happiness needs to take their soul back to the factory and demand a better one. -driftglass

    by postmodernista on Sun Oct 20, 2013 at 06:13:33 PM PDT

  •  A person very close to me (20+ / 0-)

    has lost his job, which means he has lost his healthcare.
    He is ill and has an array of medical problems, and his employer fired him.
    The employer followed the book by increasing his workload and giving him assignments that he was not qualified to do, and then documenting every little thing, which eventually led to him being fired.
    He worked for the small company for over 20 years but once his illness became more expensive - he needs a transplant - his boss took a year to fire him.
    He is unable to pay for COBRA so right now he is doing without healthcare and relying on the ER, but the ER cannot help when he needs insulin, they can only treat the symptoms.
    I am hoping and praying that he can get disability, and he is trying but has been rejected once and hoping and praying that he can sign up for Obamacare.
    He's only 60 years old, so he's too young for Social Security and Medicare.
    All I can do is pray for him and pray that he can get Obamacare soon.
    It's sad and frightening.

    •  If he wants to work, I wonder if after Obamacare (6+ / 0-)

      goes into effect, his boss will rehire him. The way I understand it (which may or may not be accurate), prior to Obamacare, small businesses that offered insurance had everyone's premiums go up if there was an employee who needed a lot of care. Now, with Obamacare, they can buy into the large risk pool. So there will be a lot more healthy people to balance against one sick person. Maybe he can suggest to his ex-boss that he check what the premiums would be if he got a different policy under Obamacare. What does he have to lose? He's got 20 years invested in a formerly good employee.

      •  Hmmmm.... (9+ / 0-)
        The employer followed the book by increasing his workload and giving him assignments that he was not qualified to do, and then documenting every little thing, which eventually led to him being fired.
        The company increased his workload, giving him assignments he wasn't qualified to do, documenting everything (that's why it took a year to fire him)....
        He may have had 20 years invested in the company but why would he want to return to a company that treated him like sh** once he became ill?
        If the company cared for the welfare of this employee and his family, certainly there were far more humane ways to deal with the expense of his illness than to cause him extra stress by piling on extra workloads of a nature he wasn't qualified for and then firing him.
        I have a co-worker in a similar situation (it was the meds he was taking for a chronic condition).  The company was on his back for quite a while, knowing full well it was the meds he had to take. They, too, documented everything, on the road to firing him.  Fortunately, he's been able to be out on disability but that'll be up soon and he'll either have to come back to work, having every little aspect of his workday examined beyond belief, or quit.

        I think, therefore I am........................... Plus ca change, plus c'est la meme chose....AKA Engine Nighthawk - don't even ask!

        by Lilyvt on Sun Oct 20, 2013 at 07:31:53 PM PDT

        [ Parent ]

        •  You're right. (5+ / 0-)

          I was thinking about the man who had invested 20 years of his life working there. I wasn't thinking of what he thinks about the bastard who ran him off. Thanks for the smack in the head. I needed that.

        •  i have to concur: i was harassed & burdened beyond (10+ / 0-)

          capacity to do my proper job a lot like the friend arizonablue was describing.   at the time, all i could think of was the years of work it took to get qualified and the years i'd put in after i got qualified, without recognizing that management that loads even more burdens on an ill employee and way above pay grade has created a workplace dangerous to all its employees, most of all to the ones with health issues.

          only when i'd managed to partially rehab myself and had jobs elsewhere (had a master's degree so i was able to get a pre-k-thru-jr-college substitute teaching credential for the first 6 hrs of the day, and late-shift newspaper/magazine work in the evenings/night) was i in a position to realize that when management knows itself free to do that kind of thing, it means the local Labor Board (or whatever agency is tasked with monitoring and enforcing labor laws in the given jurisdiction) has its hands so tied by local corruption and de-funding that even if a worker forced out for ill-health reasons COULD go back, the risks of doing that are drastic.  how much worse will management be to a worker they already got away with destroying in the first place?  it would be an extremely hazardous situation and only a last resort, maybe useful most in order to have a job while looking for another because that seems to be the most successful job-change scenario these days.

          i hate to think of anyone having to go back to take more 'punishment' for the 'sin' of being ill or injured.  i hope arizblu's friend can qualify for soc sec disability, and hopefully rehabilitation services (if they still exist) for developing different job skills or upgrading the ones he has and getting placement help.  soc sec disab used to include that the beneficiary could do parttime work earning up to i believe about $1,200/month in i think it was 2005 without those earnings taxed, and certain hold-onto-the-ability-to-work-by-having-paid-help-&-specialized-equipment expenses were subtracted by the soc sec caseworker from the total earnings if they exceeded the maximum, as part of soc sec's work trying to help ill and injured beneficiaries able to be self-supporting again.  i don't know if those kinds of programs and services still exist, but i hope he can look into them and see if there's anything he can qualify for.  good luck!

          •  No, I must correct you on the wage ceiling (4+ / 0-)

            for most people on SSDI. Last I knew, it was just over $700/month (720? 760? I forget) before it triggered the return-to-work status. That is, having 9 months (not necessarily contiguous) of earnings over that amount would put you in the ticket-to-work program, under the assumption that you were attempting to go back to work.

            There are some protections in place so that people can ease in, and not lose their payment/Medicare, but the amount of money one can earn without repercussions is remarkably low.

            My admittedly limited experience with SSA workers is that they are helpful, so if your friend has questions it's worth asking someone who can tell him the real deal.

            Support Small Business: Shop Kos Katalogue If you'd like to join the Motor City Kossacks, send me a Kosmail.

            by peregrine kate on Sun Oct 20, 2013 at 09:32:41 PM PDT

            [ Parent ]

            •  ah, thnx for the update! 'tho it's weird, because (0+ / 0-)

              the last time i discussed it at the local soc sec office, around 1998, it was $900/month, 15 years ago.   for a few years i received periodic mailings from soc sec about that program, and the figure went up gradually.  at some point i heard about $1,200 and was reeeely in a rage that i was in such bad shape that i couldn't do that.

              non-provision of healthcare by my HMO forced me onto/into soc sec disability.  the program at that time was acronymed PASS but i don't recall what the letters stood for.  is it possible that the figure you mention is the maximum allowed AFTER all work-assistance costs were deducted from whatever gross total?

              altho' of course it doesn't matter as to the past.  only matters what is allowed and helped now, for people forced into that position.

          •  Absolutely! (4+ / 0-)

            I work on a team of 20 and 6 are out on some sort of medical leave (it had been 7, but one person just returned), most on stress related illnesses.  Four or five others have gotten temporary leaves for chronic ailments (when they're ill, they're allowed to call out without incurring a demerit the rest of us incur....4 or 5 demerits and you're out in the cold). The problem with the temporary leave is that you have to be out when you request it, and it may be denied.  You can't request the leave before-the-fact, even if you have a chronic illness, knowing the illness WILL force you to be out sick at some point, you must be out in order to request it.
            The company rolled personal time off (including vacations) in with sick time.... you take a day off, no matter if it's for an unplanned sickness (you get the demerit) or a planned vacation day, it is deducted from your cache of days....i.e. if you have pneumonia and have to be out for a week (unplanned and a major demerit with a signed warning), but have a vacation planned, you lose the vacation days (even if you plead to take the days without pay and the vacation has been planned (with others) for 8-9 months).  Of course, there are always those who game the system and go on their annual 'unplanned' (which of course had been planned, simply not officially) vacation or cruise without repercussions. It's a VERY imperfect system which allows someone to go on an unplanned vacation/cruise (with regularity) and remain employed and another person (a young mother) having to care for a sick child, to be dismissed.  The whole demerit system is draconian in its harshness and very subjective as to who gets the harshest treatment, which allows for unmitigated bullying of the ill or those in need.  Any wonder there's stress?
            Try fighting it and you're labeled and your work life is pure hell.  
            Interesting place to work.

            I think, therefore I am........................... Plus ca change, plus c'est la meme chose....AKA Engine Nighthawk - don't even ask!

            by Lilyvt on Mon Oct 21, 2013 at 06:42:08 AM PDT

            [ Parent ]

    •  healthcare (8+ / 0-)

      I managed to get Medicaid before I got SSI. I still had to prove a disability, but it was handled separately. Since there is no money involved, Legal Aid might be able to help you. I went through the same denial and appeal process I would go through, but I had their help all the way.

      If you have been denied, file an appeal as soon as you can. Most of those procedures have a time limit within which to file. Don't give up!! That's what they want you to do when you get discouraged. By the time a hearing with an administrative judge is held, you will have a good chance of getting it. He/she will have read your records and ask intelligent questions. The judge didn't even use the whole time allotted before he told me I'd get Medicaid. I live in North Carolina, and each state handles the Medicaid process, so your experience may be different.

      Social Security disability is handled by a federal process. Since there is money involved, Legal Aid probably can't help you. Definitely get a professional representative. I wasted years believing them when they told me I didn't need one. Otherwise, the process is the same.

      It's been about five years since I went through the process, so I don't know if things have changed.

      Good Luck.

  •  I still feel a sense of shock seeing ACA signups (9+ / 0-)

    Dear lord, so many hundreds of thousands of our people adrift and without care.  I hope the ACA helps you.

    I have written a few times to Timaeus, he was very sick with pneumonia and could not reply.  I will write to him again tomorrow, he should be much better, or at least some.

    [sigh] Good night, gentle people.

  •  To the diarist's interviewee: I'm sad you're sick (7+ / 0-)

    and have lost so much in struggling to stay alive when the system here is not (yet) set up to help you do that.

    But I'm glad you've made it this far. You are worth it. Please don't ever give one more thought to those who would bring you down.

    It is terrible that we have been living in a society that is so cruel. What it says about us, I daren't write in this forum.

    Support Small Business: Shop Kos Katalogue If you'd like to join the Motor City Kossacks, send me a Kosmail.

    by peregrine kate on Sun Oct 20, 2013 at 07:23:43 PM PDT

  •  extremely valuable diary & comments! thnx so much (9+ / 0-)

    to tmservo433 and to 'jennifer' for a wonderful collaboration on 'case study' of real life proving why healthcare is needed.  i'm constantly puzzled that ordinary folks from the 'other side of the aisle' (not puzzled about the politicians there, of course) don't "get" that if nothing else there is as much talent, drive to succeed and contribute, and investment in learning how, among americans with health impairments as among the rest, and america is the loser when so much valuable human resource is squandered for lack of an effectively supportive health care system.

    which sounds cold, i know, but it's the only reasoning i've ever been able to use to get a flicker of understanding in the eyes of neighbors and strangers whom i try to persuade to support the ACA.     and truthfully i do usually say those things as if i'm a 'recent convert-to-ACA' centrist conservative (instead of as a conservative socialist! THAT aint gonna help the cause!.    'tho it's sometimes fun to confuse certain of my acquaintances with) - i don't want whomever i'm speaking to going selectively deaf from instantly "seeing blue" in my persuasion efforts.    the least hint even, of "do the right thing" arguments, and they fire up about irresponsible sexual behavior, and the evils of teaching sex education and distributing condoms (the inherent contradiction they're espousing doesn't register on them because in their eyes only married couples should have sexual relations) and availability of abortion.  that only fires up a lot of heat and sheds no light, so i stick with the "productive for america when everyone brings their skills to the economy and pays their taxes" approach.

    sometimes i touch on what it's cost me personally that i was blocked from obtaining the healthcare that would have helped me stay a working self-reliant taxpayer instead of being made a 90%-housebound semi-cripple in my 40's, and sometimes that gets 'thru, but too often the response is, "well i know from our mutual friends that you deserved to have good care and it's wrong that you didn't, but most people who don't have healthcare aren't like you."  their fears that good healthcare for all must surely come out of their pockets is behind all of that objecting, mostly.  they have a lot of fear, so i mostly stick to the rationale that will help them recognize that we'd all "profit" if we all had good healthcare, good education, healthy food, clean water & air, somewhere safe to sleep and to be with our loved ones.

    i don't 'get out much', 'tho, obviously --less and less these 19 years i've been disabled because the condition and related impairments keep getting worse even 'tho "they're not supposed to do that"-- so i don't have much opportunity to be persuasive to others.    so i'll end with thanking everyone who keeps working on that.  i appreciate all you do, especially today the writers of this diary.

  •  I wonder what it would be like (8+ / 0-)

    to step confidently out of bed and stride to the bathroom in the morning. I am hoping that with the ACA I will someday find out.

    My left ankle, in particular (I have a bad one and a worse one) is very unstable. I always step very carefully, a large part of my mind on my footing and what is there to grab if I lurch sideways, as I do sometimes when the ankle just won't work.

    But first we have to get Bear to where he can get his knees done. Then I can get my ankles done.

    When you come to find how essential the comfort of a well-kept home is to the bodily strength and good conditions, to a sound mind and spirit, and useful days, you will reverence the good housekeeper as I do above artist or poet, beauty or genius.

    by Alexandra Lynch on Sun Oct 20, 2013 at 08:52:22 PM PDT

  •  gotta go, y'all (3+ / 0-)

    I have to go to bed to be up bright and shiny- kitkat is doing her driving test tomorrow in Austin, the to the bus that takes her to Houston for the last orthodontist and recruiter appointments. She and I are as prepared as can be for next Tuesday's departure.

    I'll see y'all Sunday in next week's diary by a new member, WhattheJules talks about agoraphobia. please share with anyone you think might be interested, and cross your fingers for me in the meantime.

    Anyone who scoffs at happiness needs to take their soul back to the factory and demand a better one. -driftglass

    by postmodernista on Sun Oct 20, 2013 at 10:45:36 PM PDT

  •  Talk to your school ombudsman (2+ / 0-)
    Recommended by:
    viral, postmodernista

    You should talk to your school omsbudsman. There may be things you can do about the failed classes since you had a serious illness.

  •  Thanks for sharing. (3+ / 0-)
    Recommended by:
    4Freedom, postmodernista, Oh Mary Oh

    Once the web site is glitch free Im hoping for a map of the  country that shows the life expectancy of chronically Ill people who can't get the ACA vs those who can based on the state you live in.
    Click on Texas or another non participant in medicaid expansion and see that you will die!!
    A graphic animation to illustrate the point would be nice also.
    Maybe it will shame the governors into action. Then again most of them have no shame.

    "Love is what we were born with. Fear is what we learned here." Marianne Williamson

    by Canadian Green Card Alien on Mon Oct 21, 2013 at 02:43:11 PM PDT

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