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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At Regular Intervals Part III

July 18, 2006 at 11:25 AM (cancer, Hospital Staff Lunacy, Hospitalization, illness) (, , , )

1991

Friday, Valentines day. Lovers’ Day.

At about 2:00 my physician informed me that I had Hodgkin’s disease, a cancer of the lymph nodes.

Stage 3b which was basically one stage away from, ‘Get your affairs in order.’ They felt very strongly that it was important that my chemotherapy begin the following Tuesday. (Until, of course, it was determined that my insurance would not allow me to be treated there. Then, a three week wait for record transfer to a hospital *twenty minutes west on a city bus* was the best way to proceed.)

Out they went. In came my husband. For the next 45 minutes we talked about what this would probably be like. I tried to maintain a look of calm, as much for myself as for him. I had told him the night before that it was fine for him to go to Texas to visit his sister since we had both made plans to go. But my inside self was crazed with fear and begging him to *see that,* understand that, and stay behind, for me. 45 minutes after I was diagnosed he left for the airport, on that night that I was told that I too, might die young. My Mom and stepfather left also, shortly afterwards.

Discernment eluded both of us that day. He never understood that I wished him to stay and I never knew until much later that he wept during the entire flight down to and the whole visit was full of tears for him. “What will happen to her,” I am told that he wept often and wondered.

And the records nightmare after he and I returned home:

The hospital that I was *diagnosed* at first told me that my chemo abosolutely *had* to start the following Tuesday, due to the late stage of my cancer. Couldn’t wait. Had to rush in there and save my life, after all.

But magically the next day, they didn’t think it was so urgent. They did not want to treat me because they did not have a contract with my private insurer. But, there was another nifty hospital *five minutes by car* away, that *did* have a great cancer center as well, and a contract with my insurance carrier.

So I was slated to get my care there.

Slight problem. The doctors at the new hospital wouldn’t proceed without reviewing my medical records from the old hospital, specifically all the minutiae in the biopsy report itself.

This was just before the digital revolution began…so records were still on microfiche or in hard folders.

I called Hospital One *every day*

Records Toad at Hospital One: “Well, can’t you come and get them?”

Me, in bed technically terminally ill on the phone: “Actually no. I’m unable to get out of bed, and if you’ll check the chart, my husband has a serious immune system illness as well, and right now *he’s quite feverish and has a case of bronchits* so he won’t be LEAVING THE HOUSE RIGHT NOW!”

Records Toad at Hospital One:

“I don’t understand why your’re so upset.”

“Because I want you to give the records to a courier have the courier *walk outside* get on City Bus # [whatever the bus was] ride ten minutes west, get off the damn bus walk into the [Cool Hospital Beloved By My Insurer] and *give the biopsy results to the right person, NOW!”

Records Toad at Hospital One: I’ll have to talk to [xfdkdfijge]. And they hung up.

That went on for *three weeks* before I actually began the chemotherapy that saved my life.

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