I'm sure many have seen the Lord of the Rings film from eight years ago. There's a scene showing the Wizard Gandalf fighting some giant demon....the demon is thrust from his perch, and falls towards a fiery end...but just as the wizard figures he's won, well...a lash of some sort comes up from the falling creature, grabs him by the ankle, and drags the Wizard down with him...
He thought he'd won...and suddenly he lost.
I'm feeling like that these days, because a consolation prize from my cancer has come back to bite me.
More below the weird squiggle.
First a definition or two
Lymphedema is a disease of the lymphatic system, the system that helps carry fluid and toxins out of the body.
Paratransit means the short, wheelchair lift-equipped busses that run parallel to, or congruent with fixed route transit systems, for folks who have additional physical conditions that make waiting at a regular bus stop impossible.
I went into a rehab hospital on January 4th 2012. Lots of testing. Physical and occupational therapy to try to bring my physical function up. Three hours a day....and I was committed to that, and did it all. Tiring, and really pushing my disabilities to their limit.
Good news: I have no diabetes or present day heart disease.
Good news: Every bit of moving I do is good for my cerebral palsy, my attempts at weight loss, my depression etc etc.
But. I survived cancer in 1991. A cancer of the lymph nodes that left me with very few working active lymph nodes to begin with.
Evidently I've had lymphedema in both legs for quite a while, a permanent disease common to cancer survivors. After twenty years, the remaining lymph nodes are not working as well as they should. I just found out about it last month, but in hindsight I think it started in 2007.
The cancer isn't back. I am not terminal...but. Given the state of what's left of my lymphatic system...there is no way to calculate a life expectancy...because I am at risk for congestive heart failure or serious infection...and once all the lymph nodes stop...well.
On top of that, I am now a stark example of what's known as institutional bias in Medicare/Medicaid coverage.
My docs thought that when I left rehab I would have three good options for treatment.
1. Homecare nurses or skilled therapists to wrap my legs at home in a particular way to help my lymphatic system push fluid etc out of my legs and out of my system.
2. Have outpatient wrapping done by therapists at a clinic.
Or 3. Get a lymphadema pump to do the same job as the wraps...
Two of these are definitely not covered and the third...an outpatient clinic may not be covered either. I'm trying to schedule to go there.
Can't use a pump because Medicaid will only cover these things if my skin breaks.
Homecare is ending because:
"We were told she could do these wraps herself!" (I can't, because of my cerebral palsy and my docs and therapists were very clear in explaining that) "It's a non skilled service." "We can't do it."
Whiners.
I live alone, in subsidized housing that is completely wheelchair accessible (dropped kitchen appliances so I can see over the top of the stove, wash dishes from a seated position etc) and wide doors and a roll in shower.
Due to the economic downturn Lorain County, Ohio eliminated county wide paratransit two and a half years ago. (they had been providing that transport which was over and above the ADA minimum) shrunk their fixed route buses to just Lorain and Elyria and advised that paratransit vans only need be provided within 1/4 mile of their now minimalist fixed route system. [this does meet the minimum standard for paratransit under the ADA]
I'm on the eastern edge of the county so there are real transportation issues here.
(irionically there are fixed route busses with lifts sitting in a parking lot somewhere, purchased with stimulus money that have never been driven due to the Lorain County Transit cuts...)
The option that has been suggested, because of my lack of transport and that wrapping legs with bandages is evidently beyond the scope of Medicaid coverage the fourth option....
Is confinement in a skilled nursing facility until my legs shrink down enough that compression socks, which I could do at home, become an option for me. Whenever that might be......
If I go there all my disability income is directed to the nursing home, and I lose my current apartment.
If I get no more treatment, I'm at risk for congestive heart failure and serious infection down the road.
I recognize that.
But I just got this apartment that affords me a degree of independence and dignity and self management unavailable in a "normal" home in May of 2011.
I'm not going into a nursing home over two damned bandages no matter how important they might be.
I'm only fifty I'm not done yet. I have too many people left to offend.
And how insane is it that Medicare/Medicaid will pay for confinement, warehousing, soul killing isolation so a therapist can come and wrap my legs to the tune of an average of 4k a month, but will (not at this time) pay for someone certified in this complex wrapping to come to my cool house and do it. (or pay for transport to the outpatient clinic to get things done). At a cost of much f*cking less, both in funds and loss of personal autonomy,.
I've applied for and been approved for some home and community services )based help in my home (it doesn't include the wraps, but transport and home assistance are part of it.) It may take two more months to get started
I'm tired. My last piece of fighting is that : I will not leave my home. I know there are no answers here on a political blog. But the Kosability community has been an amazing place to learn from so I'm putting this out there. (Yes, sigh I know it isn't a Kosability night.)
I won't lie this sixth disabling condition has slammed me into a depression (or at least a Great Recession...) I'm just done. My medical providers need to fix this. They may not be able to.
Health care in America. Having none is the worst, but even having it can be a slow drive to Crazytown.