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Month: September 2019

Medicare For All

Be careful what you wish for!

I’ve had experience with medical insurance that encompasses most all options. From military to no insurance, from an HMO to a PPO, from the ACA to Medicare. None have been satisfactory but medicare is a major problem for me now. It is not insurance. It is a government-run mess of insane rules and surprises.

My medical coverage path has been erratic over the years, with different employers to self-employment. I was drowning back in 2012. My insurance, COBRAed in 2009, had gone from less than $300 a month to over $900 when I was informed that my rates were jumping to $1200 a month in November. Suddenly I was facing being uninsured again. The good news was the Affordable Care Act was about to come into reality with the website to launch on my birthday that year.

I ended up with little time being uninsured, thank heavens, and I was thrilled with my new insurance. My cost per month, adjusted for income, was back down around the $300 level and the benefits were much better than my previous much more expensive policy.

Then came the hospital bills. I have Ehlers-Danlos Syndrome (or a variety of some yet unidentified connective tissue disorder but that’s another discussion). I had had little major issues up to that point but then my colon quit. It just went on a sit down strike and I was faced with an agonizing decision. I opted for an ostomy which happened January 15, 2016. I was pleased to have met my yearly cap 2 weeks into the year but the cost was enormous. I owed over $4000 after insurance at a hospital that prefers to sue. For someone whose working life was nearly over and not yet on social security, I wondered how we were going to survive.

The answer came months later when I became eligible for Medicare and a sibling stepped up to help out. Handy coincidence, I thought at the time. I went on to have a total of 5 surgeries in 18 months. I incurred no bills beyond my airfare and lodging to Cleveland, Ohio for my last surgery. My cost? I signed up for medicare part B and a AARP supplemental policy. The supplemental was pricey comparatively but worth it because the one I chose had no copays or deductibles.

Fast forward to today. My problems due to the EDS have worsened and I need much more medical care now than before. For the first time I need more than Medicare provides. I need compression stockings, I need mobility aids, I need occasional transportation assistance. I also needed hearing aids and knew already that Medicare wouldn’t pay for those. Due to multiple disabilities, that obstacle was conquered with the assistance of federal monies and a state program, allowing me to continue working thus avoiding Medicaid and food stamps.

Medicare does not cover compression stockings – one of the needs more often found in the senior population.

Medicare does cover mobility aids – but only 1 every 5 years. Get a cane through Medicare and need more? You are out of luck. Get a walker/rollator and then find you also need a wheelchair? You are out of luck. Ehlers-danlos? It may require most of those aids depending on the needs of the day. Which one do you pay for? I opted to save it for the just-in-case wheelchair.

Medicare in general will not cover breast reduction. They may say they cover medically necessary procedures but woe be to anyone who needs a plastic surgeon to perform what may be medically necessary. The decider is Medicare, not the doctor or even a team of doctors. My recent brush with this found a 55 year old plastic surgeon who described one situation that medicare deemed unnecessary. A patient had an open wound on his leg for over a year. The plastic surgeon closed it. Medicare denied payment. You can’t get those procedures pre-approved, by the way. You wait until after the surgery to find out whether they cover it or not. So much for improving my posture and back pain! (Open up the spine, insert a rod and pins and endanger my life and cost more? That’s fine with them.)

Transportation assistance? In the great state of Maine, driving long distances for medical is a given. I do a weekly trip of 40 minutes one way for physical therapy. I’ve had to cancel appointments due to not feeling well enough for the drive. Surgery? I have to have a driver as hubby is no longer safe doing much driving. I’ve met some sweet neighbors here that have offered to help. Considering the distances, I then need to pay for their time and gas (or try to pay).

Advantage plans? I’ve looked at them and though one might have worked to some degree before my move to Maine, it’s not worth it here. I knew before I moved that I would need specialized care in Boston. Most advantage plans (and many medicaid plans) will not cover any out of state costs. With the high deductible plans I would also end up with many creditors and the insanity of managing payments to them with a possible higher cost per month than my supplemental plan.

So to recap, Medicare is great – as long as you don’t have a chronic rare disease. Or a heart / circulation problem requiring compression stockings. Or an erratic mobility issue.

So how much have I put out of pocket recently? $20 for a used rollator. $250 for special crutches so that I can avoid a wheelchair. I do have a wheelchair – I have physical custody this week of someone else’s wheelchair, just in case I need it. Thanks, neighbor! The recommended compression stockings were $75. I did return those as I couldn’t get them on and rebelled at the cost. That’s just this last month by the way.

I keep thinking about those young people who are severely disabled with EDS who do get medicare for disability. They face a lifetime of restrictions beyond their disease. A lifetime of being told no. A lifetime of facing costs that may mean either someone else has to step up and help or a gofundme campaign. A life of quiet desperation. Oh yeah, and if you are under the age of 65, you cannot buy a supplemental or advantage policy. Copays and meeting deductibles apply.

Medicare is great. Social security is great. These social nets are necessary.

But whatever you do, don’t mistake Medicare for health insurance, because it’s not. It is government funding for specific things. It is a stab at medical care – medical care controlled by government employees and arcane rules.

If you have a chronic condition, especially if it’s rare, Medicare is a panacea, not real medical coverage.

Can You See Me Now?

Just recently I moved into a new category of disabled. For many years I’ve been part of the invisibly disabled. Struggling everywhere – whether in a store, in a crowd, in a parking lot. I started asking young people to help me – playing the little ole woman thing. But I so often had to ask. And sometimes it’s just easier to go home, stop shopping, stop looking for a parking place.

I’ve had some problems with walking for some time now and I had been ignoring it. When I would reel around and stay upright, I was gleeful. “I didn’t fall!” Then I sprained my ankle. It wasn’t a bad sprain; I taped it and a few days later it felt pretty good as long as I didn’t bend it one way. Then I tried to fall a couple of times ’cause it would just collapse. In addition, we discovered I seemed to have some nerve damage or impingement on that same leg.

While taped, the ankle felt so secure, so strong! Without the tape, it was just wobbly. Then I realized I was just wobbly. As one fellow EDSer said, rubbery. I have osteoporosis and have been dang careful since my diagnosis to prevent breakage. So I started trying to figure out what mobility aid I could use. Not a cane, the wrists don’t work well enough for that. Not a walker, I can’t lift the sucker in and out of the car. Regular forearm crutches required too much hand/wrist action. Not ready, thank heavens, for a wheelchair.

Then someone suggested a new type of forearm crutch. They look like something out of Star Wars – I rented a pair and was sent white. I wanted black, thinking I would rock the Darth Vader look. Cousin says the advantage of white is that it’s easier to see. Then the world changed.

All of sudden I have people offering to help me as I enter a store or when they encounter me in the store. I have folks apologizing to me when they suddenly realize I’m waiting patiently for them to get out of the way. I get stares when I’m used to being ignored. I get asked questions since the crutches are really quite different looking. I’m no longer a mousy little old lady but a standing up straight storm trooper!

I became visibly disabled. I am seen now.

I get help – sometimes even when I don’t want it. I get salesclerks falling over themselves to help (to get me out of the store faster and safer to protect them? dunno, but I wonder). Folks no longer try to figure out if I’m disabled or not when parking in a disabled spot. They no longer resent my ability to walk after I am seen parking in a disabled spot. Inside, they either give me plenty of space to maneuver or ignore me as if I don’t exist. That dichotomy is truly fascinating.

I keep getting myself into idiotic situations. Walking into a store and realizing I have no way of carrying products or using my preference of a small cart. The crutches just don’t fit on it or even on the larger standard shopping carts. I carry my iPad dang near everywhere as it’s my new book du jour – lots of reading material! Well, try carrying that and a pocketbook on crutches. Nope. So I finally got a knapsack (my first ever real one) with partitions too deep and buckles and pockets and the ability to adjust to my needs.

In some ways I love it. In some ways I hate it. I also hate having to carry anything; however, my asthma inhaler now has to accompany me. Did you know that Maine is one of the states with the highest asthma rates? My occasional mild asthma has turned into a constant mild asthma. Guess it’s not going away again. That inhaler was the last straw for the small pocketbooks I’ve been carrying for years. I moved to a larger cloth bag ($5 at goodwill) to be able to carry all the bits and pieces that need to go with me now. Then I had to trade it for a knapsack.

I bought a small wristlet purse for the money and credit cards that can be pulled out and used separately. I’m now carrying my Morphie charger for the phone and my car charger as well. I carry a set of ostomy supplies, leaving nothing to chance as I have for years. An eyeglasses case so thatI don’t lose or break my reading glasses as I have done so often in the very recent past. Sigh. An extra small cloth bag for shopping – though I’ve found enough stuff hanging off the crutches tends to make me much less safer. And the list of contents goes on….

Walking on the crutches has shown me that I’ve been walking so carefully that I was watching the floor, hunching over and walking incorrectly. One of the weird problems of Ehlers-Danlos Syndrome is poor proprioception where it is easy to “momentarily lose a sense of where the limb is in relation to the body”. So when things go bad – it’s truly hard to figure out what’s the right way to do things. This is why EDSers are used to being called clumsy.

I’m now in constant physical therapy using the crutches. I’m standing straighter and walking correctly while using them. I’m starting to be able to better stand straight without the crutches since I’m actually exercising those core muscles that are still so weak after a massive abdominal surgery 2 years ago. And it’s less likely I will fall.

As time goes on, I feel less and less conspicuous. I now can go walking even when I feel weak or ill. I can go places where I may have to stand for longer than I want as I can now rest on the crutches. I don’t have to give up shopping before checkout. I’m moving more and enjoying it more. When someone expresses pity for me, I tell them this is the better solution – helping me to avoid a wheelchair, keeping me mobile and self-sufficient.

Now if I can just figure out how to shop as I need while on crutches. I need a tethered float cart to follow behind me. What? Not possible? Au contraire. After all I now have Star Wars crutches!