I just can’t do that anymore.

February 2, 2012 at 4:49 PM (Uncategorized) (, , )

So, yes I’m right in the middle of another stupid emotional meltdown about the Latest Serious Medical Condition…and I’ve had two bad days of eating.

Not horribly bad or out of bounds…but beginning to head there.

It’s gotten to the point where that sort of eating can have a direct, fairly quick, negative impact on my lymphadema if there’s too much salt in the mix.

I am trying to do something different, when I screw up.  I am trying not to let it be a permanent giving up.  I don’t know why it’s so hard to get back on the “grilled chicken spinach salad egg white omelet bandwagon.  Shouldn’t be, because I like the stuff.

Everybody was laughing on TV today when researchers stated that (white processed) sugar was as toxic as any other addictive substance and should be regulated.

Well, duh, yeah.

I could have told them that. And I wish they’d stop laughing because it’s no laughing matter to me.


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Physical Rehab, Reinvent, Retrench-Insanity

January 20, 2012 at 8:17 PM (Uncategorized) (, , , , , , , , , , , )

My legs are not wrapped.  This vital process will not happen the way I was told.

Because of my cerebral palsy, I cannot wrap and unwrap by myself.  there may be a way to figure part of the unwrapping, which I will work on tomorrow, but the wrapping is flat out impossible.

I was told my aftercare until I graduate to compression socks would be covered under Medicare part A.  That someone would come to the house and unwrap my legs, help me clean them (not entire bathing, simply my ankles and feet. Rewrap my legs since they would be certified to do it. )

Now, the home health care agency will not wrap my legs (its a non-skilled service)

There is no way to send someone certified to wrap that would be covered under Medicare part A

I’m supposed to be set up with an outpatient clinic instead, that Medicare may not cover, even under part B.   I advised of the transportation problem making the cost of that prohibitive, they said then I’d have to be in a rehab place or an SNF [ even tho medicare wouldn’t cover a return—-] until I graduated to compression socks, or live with someone who could transport me.  I won’t go into details here, but living with my parents would be, um…problematic and risk my mental health.  I don’t mean that snarkily or as satire.  It’s a real issue.

I am not leaving my home.  I worked too hard to get here.

I AM NOT LEAVING MY HOME!  Not over a 45 minute process.  I AM NOT LEAVING my home.

So, it’s be institutionalized or lose all the progress and leave myself at risk for congestive heart failure, or come up with a way to be transported to these lymphadema clinics every day, pay for that, and pay for either 20% or 100 % of those costs.  Even having Medicaid waiver fixed would not necessarily solve this problem.

I’m contacting the patient ombudsman for Medicaid in my state, to get the transportation set up, at least.  I’m also contacting my church.

But that has to wait til Monday, and the damn legs have already begun to ‘reinflate,’ because all the home care folk can manage is a simple ace bandage.

And yes, I’ll be dumb enough to stay at risk to stay in my home.

There’s such a thing as quality of life and I will not surrender it to bureaucratic forces that cannot speak to each other or bend to necessity.

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