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View Diary: Kosability: Florida's health care plan at work (34 comments)

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  •  It's impossible to save for it. (5+ / 0-)

    Every extra penny we have is essentially going to keeping me in prescriptions that I need to live, and that doesn't look like it's going to change much in the next 6 months to a year.

    If I can get on SSDI that will help. If they expand medicaid here that will help. I have minimal control over both of those.

    "Madness! Total and complete madness! This never would've happened if the humans hadn't started fighting one another!" Londo Mollari

    by FloridaSNMOM on Wed Nov 27, 2013 at 09:56:05 AM PST

    [ Parent ]

    •  thank goodness you used to work and (3+ / 0-)
      Recommended by:
      FloridaSNMOM, Phil S 33, ladybug53

      thus SDI is possible. I hope you've applied. I hope you get it. I hope it comes soon.

      •  I've applied but I haven't heard ANYTHING back (2+ / 0-)
        Recommended by:
        Phil S 33, ladybug53

        yet, and that was a couple of months ago. I know my COPD has gotten worse since my last volume test several years ago, so it may be worth it to look into a lawyer who might be able to push for an updated test.

        "Madness! Total and complete madness! This never would've happened if the humans hadn't started fighting one another!" Londo Mollari

        by FloridaSNMOM on Wed Nov 27, 2013 at 10:49:11 AM PST

        [ Parent ]

        •  SS often takes about 3 months for a response-- (2+ / 0-)
          Recommended by:
          FloridaSNMOM, ladybug53

          and, if denied; re-apply (appeal) with more info....Worth the effort.

          •  Thanks, I'll give it until January then. (2+ / 0-)
            Recommended by:
            Phil S 33, ladybug53

            Even so that may not help me too much for the first couple of years, because it takes that long for medicare to go through after you're approved from what I understand. I am hoping that it will push me over the poverty line limit so I can get shop on the exchange however.

            "Madness! Total and complete madness! This never would've happened if the humans hadn't started fighting one another!" Londo Mollari

            by FloridaSNMOM on Wed Nov 27, 2013 at 11:24:22 AM PST

            [ Parent ]

            •  keep at it (1+ / 0-)
              Recommended by:
              FloridaSNMOM

              I got my disability about five years ago but it took less than three months. In my state, or at least, the person handling my case (ie the "decider") was very kind though I am sure there are others with a different attitude.

              I know about the Medicare wait but I do NOT know if there is some kind of waver for any circumstances.

              I'd think there is a way to see if your PFT are bad enough for disability.  For the medical problems I have, I was able to find online the narrow and specific criteria the examiner used (ie the data points they needed) to qualify someone for disability due to the thing I have. If they were given old, better numbers you could pursue getting tested again when the tap of your health insurance is turned on (my understanding is that once you go over a certain cost per month you then have Medicaid--seems freaky and stupid, must be frustrating). People with COPD are followed with periodic PFTs just for their own health (not just to get on disability). A friend of mine is tested at least once a year, for example. Seems reasonably normal given my limited knowledge just for you to be tested again.

              I know someone who was denied and called the person who denied her, saying she was truly physically disabled and what sort of documentation did they need? She got what was needed, and got disability on the second try relatively painlessly. I don't know if this is common procedure. It should be. The examiners need back up data for every claim we make toward being disabled.

              Unfortunately for me, as an aside, my PCP mentioned in several notes that I was "working" (ie my shoulder hurt when I "worked"). If they get those in a review I may be screwed. I"m not working. So it's all about documenting what you want them to know, and not having documents that contradict.

              •  I'll have to see if the hospital will do one (0+ / 0-)

                maybe on my next admit. The problem with trying to get it done after I get approved for the month is Medicaid waits so long to get me the number. If I don't go into the ER within the first two weeks, often I don't get the approval until a day or two before the end of the month. Then it's impossible to get in to any appointments to actually use it. The only good thing is if you pay cash for any prescriptions in between, the Pharmacy will give you your money back for those. That's how I got my assistance dog a sweater for the winter because she's a short hair and gets cold.

                "Madness! Total and complete madness! This never would've happened if the humans hadn't started fighting one another!" Londo Mollari

                by FloridaSNMOM on Thu Nov 28, 2013 at 05:48:42 AM PST

                [ Parent ]

                •  walking a tightrope time was as well I see (1+ / 0-)
                  Recommended by:
                  FloridaSNMOM

                  I wonder if you could call the doctor and tell the staff your dilemma and ask them to help you figure out a way. Perhaps get an appointment in advance with the caveat you might have to cancel the day before, with them understanding why that is. I think the practice manager would be the person to talk to.
                  If this suggestion would fit with your scenario, we can see how it isn't a huge stretch on their part for a HUGE help for you. Almost everyone at least initially goes into medicine to help people. Your scheduling issue entwined with your insurance stupidity (hope you don't mind me saying, it pisses me off they do that to people..off and on..off and on..never heard of such a thing and I've worked in healthcare and have medicaid now myself).Effects Your Health Adversely!

                  At the very least you could tell you doctor if he/she doesnt know how entangled this is and how it prevents you from getting yourself the best care.

                  I'm reminded how much harder it is to advocate for ourselves than it is to advocate for others, especially loved ones. Many parents would be  unstoppable in getting the best healthcare possible for a child but would not ask for help or advocate for themselves the same way. I have had to learn, and am still learning, how to be a good advocate for myself. I've been a volunteer medical advocate before and have been the one amongst my friends and family to go to important appointments and advocate and I'm very good at it. I'm less good for myself. I have trouble with deserving-ness for myself.

                  The test I use in asking for what I need is "would I ask if it were for my child?'
                  One does get more flack when one advocates for oneself ...some healthcare people will judge you as asking for too much or as entitled. THey would not do that if you were advocating for the exact same thing for someone else---because you wouldn't seem self absorbed to them.

                  They think this because they don't understand what is at stake for me/all of us/you. So, when I ask for things outside of their norm--such as having insurance hoops or needing something sooner than usual or having a scheduling irregularity--I am sure to say that it's hard to ask or that it's important and why. A few times I've gotten (nonverbal) reactions in person when I ask for things I need and then I say that I am trying to learn to advocate for myself as well as I do for other people. That gets them over their judgement.

                  •  Thank you. (0+ / 0-)

                    I will keep this in mind for the next time. As this bout of covered medicaid expires on Saturday it's impossible to do at this point. But there will be a next time I'm sure. Hopefully not until after Christmas. But it's winter and eventually I'll run out of meds again and then I will crash and end up back in the ER. Or the temp will jump around and cause it anyway, or I'll catch a cold, etc. And I will keep it in mind and do my best to get it done, once I can breathe well enough to ask LOL.

                    "Madness! Total and complete madness! This never would've happened if the humans hadn't started fighting one another!" Londo Mollari

                    by FloridaSNMOM on Thu Nov 28, 2013 at 02:54:20 PM PST

                    [ Parent ]

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