Moving Right Along

What They Knew, When They Knew It, and Why We Weren't Told Sooner

Ha!  Bet you thought this was going to be a political post, right?  Something about the war maybe?  Fooled you!  This is about the pathology of the second evil brain I was growing tumor they pulled out of my head on March 13.

Friday afternoon I had a follow-up appointment with my fabulous brain surgeon.  He was going to look at the healing progress of my incision, maybe but not likely take out my staples, and give me the findings of what I believe he called the "tumor board," a panel of experts who would look at the pathology of the resected tissue and give recommendations for further action.  This appointment did not happen.

What happened was that we got two automated phone calls from Lahey Clinic.  The first reminded us of this follow-up appointment.  The second, which arrived on our answering machine on Thursday, peremptorily informed us that we had another appointment "at Lahey Clinic," no more specific than that, half an hour in advance of this other one.

My true love got on the phone on Friday.  We were told we had to go see someone in the financial office before we went to see my surgeon.  "We had a referral for the surgery," my true love pointed out, "and everything is okay with that, right?"

"Oh, yes," he was told.  "There's no problem there."

"Um, okay."

So we did what we were told.  We went to Lahey.  If I were legally allowed to drive that soon after my surgery (which I wasn't; they want me to wait a full two weeks post-surgery), I would have gone to this appointment myself; I really was feeling that much better, and really did have all my faculties back by then.  So I told my true love that I could handle the financial officer myself, and he went off to do something else at the admissions desk.  I'm not sure what, but I have the impression that if you go to Lahey for anything you have to drop by the admissions desk first, get checked in and told where to go.

The financial officer was a plump blond woman in her 30s or 40s who seemed to be very put out just generally.  I imagine she encounters all kinds of frustrating scenarios in her week, and this was almost 4:00 on a Friday afternoon, Good Friday no less, which is a day of great meaning to a lot of people here and one which most people prefer to work only as a half-day.  So I don't really blame her for her peevishness.  What I do blame her for is how adamantly she insisted on what proved to be a wrong idea.

"You need to have a referral for today's appointment."

"We got a referral before I had surgery."

"Well you need another one for today, but you don't have one, so you can't have the appointment unless you sign a sheet accepting financial responsibility for the appointment."

"Well then we have a problem, because I don't have a job, assets, or an income, and I'm not signing any such thing."

"Well then I can't let you have the appointment."

"Um, honey?" I called, poking my head around the column dividing the financial office from the admissions desk.  "I guess I need you after all.  Something about a referral."

At some point in their conversation, we learned that "The surgery was inpatient.  This appointment is outpatient.  They're totally different."  This was told to us in a voice and with a face indicating we should have known this already fergodssake.  I was told that it was my fault this had happened because I "chose to go out of network."

I laughed.  "No I didn't."

My true love laughed.  "No, she really didn't."

See, the financial officer had not seen me in my hospital bed two and a half weeks before, hopped up on decadron, scared for my life and missing 40% of my words, begging my fabulous brain-surgeon-to-be to move his practice over to Emerson, the best hospital at which I've ever been treated and the one to which I now run first whether I've accidentally sliced open my hand and need stitches or have a headache so bad it actually scares me even though I've been getting migraines since I was three years old.

But, whatever.  Right.  I chose to go out of network.  Okay.

Once upon a time I ran the Friday morning seizure and headache clinics over in the greater Friday morning neurology clinic over at Massachusetts General Hospital.  When patients showed up without referrals for their appointments, I would hand them the phone and they or I would call their primary care physicians' offices.  The administrative aides in those offices would call the insurance companies and get the referrals over the phone, on the spot, or call me back with the referrals, usually within fifteen minutes or so.  So,

"Let's call up Dr. D's office," I suggested.  "Maybe we can fix this over the phone right now."

The financial officer looked at me blankly like I was on drugs.

My true love looked at her, looked at me, and said, "No, you know what?  I don't think we're going to be able to fix this right now."

"Oh, yeah, I guess you're right.  It's almost 4:00 in the afternoon on Good Friday, after all."

My true love then, just for kicks, began to ask the financial officer what went wrong and how we could avoid scenarios like this in the future.  I snorted, "Not like there'll be a future; this is my last appointment here.  Everything else is going to happen over at Emerson after today."  But he continued gently asking, as if there were a point.  This very much confused the financial officer, who reddened and sputtered a bit initially and then explained her take on what had happened, but I was past listening and already out the door in my mind so I don't know exactly what she said beyond what I have already told you.  We thanked her and left her office.

Because I have run a clinic, I know that people -- doctors, nurses, PAs, etc. -- actually prepare for this kind of meeting, and I felt bad about not showing up.  I worried that my wonderful surgeon and his team would think I had blown them off.  So on my request, we went upstairs, and I explained to my surgeon's staff what had happened.  I told them I would call my primary care physician on Monday and get a referral and make a new appointment.

They were very surprised that this had happened to me.  "You call us just as soon as you get that number, okay?"

"I will," I told them.  "I just wanted to apologize for the mix-up and the wasted time."

"No need," they assured me kindly.

After that, my true love and I went to Starbucks.  After that, we went to the local mall, where I had Chick-Fil-A for the very first time in my life and eventually we bought an ice cream maker at Macy's.  After my initial rage, and then laughter with my sister on the phone over the preposterousness of all this, I actually felt pretty calm, not put out very much at all.  Whatever the thing in my head had been, it would still have been come Monday, and there was certainly not going to be anything to do about it over the weekend, if ever.

Monday I called my primary care physician's office.  I was informed that it was my fault for going out of network, that I needed to get the referral from my surgeon's office, and that I should really call Network Health, the free-to-me, Commonwealth-sponsored insurance plan I was also told I am paying for, to get the referral and also find out what my benefits were.  This was very odd, because (a) I have never heard of anyone but administrators in primary care physicians' offices obtaining referral numbers, and (b) the woman who told me this was the same woman who got the referral number for my surgery for my true love as my health care proxy when I was too mentally incapacitated to interact with doctors office administrative aids myself.  But I played along.

I called my surgeon's office.  "We don't get referral numbers," I was told.  "We never get referral numbers."

"I didn't think so, but this is what I was told to do."

"But you don't need a referral number anyway.  You're on 'global post-op,' so this visit was covered by the initial surgical referral.  Both the doctor and his PA were very surprised to hear that this had happened, and the PA wants to speak with you."

The PA and I exchanged apologies, condolences, and expressions of pissed-offedness.  Then I made an appointment for 9:00 this morning to have her look at my incision, probably take out my staples, and tell me what the hell that thing was anyway.

My true love dropped me off on his way to work.  I was going to walk, but he was going in to the office anyway for the first time in a week, and he worried that I would be too fatigued if I had to walk both there and back.  Now that I am off decadron, a crazy-making steroid prescribed for brain swelling, I actually am capable of a normal amount of post-brain-surgery fatigue, sometimes dropping with no warning into six-hour naps.

"So?  What was that thing, anyway?"

"Oh, it was melanoma."

"F*CK!"  I shouted.  Then, quietly, "Sorry."

"No, it's okay.  I was very sad when I heard."

"Yeah, that's a big bummer.  But you think you got it all, clean margins whatever that means for brain stuff, and there aren't any others in my brain that you can see right now, right?"

"Yes, he's very happy with the way it came out, just that little bit sticking to the membrane which he thoroughly burned."

"Scorched it."

"Yep.  And no, there aren't any more.  So what he thinks the thing to do is just keep an eye on it, have you come in in a month and get an MRI, and then have you come in in another three months and have another MRI, and then see what it does."

"Okay.  I can do that."

"He's going to call you to talk it all over with you."

"That's very kind of him."  And it is.  See, my not having that appointment at Lahey on Friday and him talking to me on the phone mean he and Lahey don't get paid for this consultation.

The PA took out my staples, which she was probably going to do today anyway.  I regret only that I forgot to ask for them so I could make jewelry out of them, but my mind was already kind of racing forward to what I would do next.

Then I walked home.  I walked home in a prosthetic limb which is now too big for me because I've lost 10 pounds since September just getting off my ass more and watching my diet, and then I lost another 10 pounds in one week having a brain tumor and being put on steroids.  This means that every step I take my leg falls off unless I wear my velcro strap and narrow-leg pants tight enough to keep it from falling too far when I lift my leg.  It also means that every step I take on my right side is supported by my girl parts and my butt hole across a narrow strip of the flexible polycarbonate my socket is made of.

But it was a beautiful day, and I had some nervousness to work off because every time I am told that whatever it was that just got tested or hacked out of me was indeed another melanoma it shakes me to my core, every time even though you'd think I'd be used to it and totally cool, suave and unsurprised by now.

All the pictures illustrating this post came from that walk.

I went home and waited for the doctor to call.

"It really looked exactly like a meningioma," he told me.  "And it was exactly like a meningioma in cell structure and architecture.  But then the lab did some stains and found a protein which only occurs in melanoma.  So it was a very strange kind of melanoma."

(Or, as my true love had told me when I told him, "It was the f*cking luckiest f*cking brain melanoma ever."  And don't I know it.)

They still have no idea how old it was, how fast it grew, why it got all inflamed all of a sudden or anything else.  There really is nothing to do but watch and wait.

So.  Nothing has really changed.  I have a bunch of masses in my lower abdomen/pelvis that could be cysts, fibroids, or melanoma, or some combination of all three, or something else entirely.  I will be getting a PET scan to find out what other cancerous masses I have in my body right now, how many, and exactly where.  Because of a hereditary peri-menopausal hell which I had already begun to experience, so bad that it caused my sister, my aunt and my grandmother all to have hysterectomies when it happened to them, I had already been planning to go see someone about that this year, just like weight loss and increased fitness had me already thinking of calling my prosthetist about getting fitted for a new leg.  But then I got a brain tumor, so now everything has to be sped up before I can decide what, if anything other than watching and waiting, I want to do -- everything but getting a new leg, which, though suddenly more urgently desired, will have to wait until I find out what I need to find out and decide what I need to decide because what I do may also change my weight further.

The three weirdest weeks of my life with some of the most magnificent gifts and terrifying horrors and bizarre annoyances I've ever experienced have passed, and nothing has changed except that I have, well, new homework assignments.  Sort of.

I can't really complain.  Other people have it so much worse than I do.  And yet I must confess, I'm pretty dazed and very tired.

I think I will spend tomorrow reading other people's voices and mostly not talking myself.

Sorting.  Sorting.  Sorting.

The machine is sorting.

Meanwhile, it is spring, and the hundred daffodil bulbs I planted two autumns ago to beautify an ugly parking strip are returning.

And soon there will be lilacs.

Your Tax Dollars At Work!

Love Thursday (which has been resurrected by Shutter Sister; thank you, SS!) returns to Moving Right Along this week with a bang.  A huge ringing bang.

Look at the gift I have just been given.  Well, maybe don't look if you get icked out by such things.  On the other hand, if you enjoy looking at such things, click to enlarge by all means!  It's a little blurry, though.  It's hard to take pictures of the back of your own head even under the most ordinary circumstances.

Isn't it beautiful?  It's one of the most beautiful gifts I have ever been given.  Actually, it's a lot of gifts, from a lot of people, and it's going to take me quite some time to list them all out for you.  It may take me years.  For today, though, in case the beauty is not immediately obvious to you, let me just begin to explain.

One week ago today, I was given free brain surgery with all the trimmings by a genuinely world-class team of kind and compassionate -- and highly specialized -- neurosurgical experts, courtesy of the Commonwealth of Massachusetts.  I had come to the emergency room the week before that highly altered and with a two-month-old headache that just wouldn't quit.  Turns out I had a brain tumor the size of a golf ball.

Miraculous.   I just showed up needing this insane amount of quite expensive, complicated help, and you gave it to me, freely and graciously, with exactly the same level of service and compassion I would have gotten had I been the child of a foreign potentate brought in on a private jet.  (And I know this for a fact because I have worked in local hospitals and personally served children of foreign potentates.  None received better care or more deference than I have enjoyed in the last three weeks.)

So.  Thank you, Massachusetts.  Thanks to you and your subsidized health care for the impecunious within our borders, I can read and write today.  This is especially impressive when you realize that I could do neither one a little over two weeks ago.

Like most people, I have done nothing particular to deserve your help.  Like most people, I have also done nothing to deserve a brain tumor.  This stuff just happens to people, all kinds of people, all the time.

Like many people, I could never afford insurance to cover it.  Never.  Even with the best private insurance I ever had, the amounts not covered would have devastated me financially.  And the confusing paperwork and conflicting stories from the insurance company, plus the collection calls from all the service providers' automatically-summoned-after-X-number-of-days bill collectors would have started within weeks of my surgery.  Even with every responsible measure of a responsible person in place to mitigate the fallout in just such an event, this is how it usually goes for many many people, maybe even most in this country, when something this big just happens to them through no fault of their own.

Many of us have long been arguing that helping each other is exactly what our collective resources as humans are for.  Helping each other.  Not killing each other or trying to quantify each other's monetary value.  Thank you so much, Massachusetts, for being part of this country that agrees.

So how 'bout it, rest of America?

So I'll bet you didn't realize this, but the whole argument about socialized medicine?  It boils down to love.  Do you love America?  Great.  Now do you love what America is made of, Americans?  Do you really?  Well, how much?

Do we love this country and each other enough to figure out a way for every single person in America to have what has just been given to me?  Or are we too busy judging and measuring and lying to each other about what things really cost to make this kind of possibility a reality for every single person?

Every single person deserves this level of help and service.  Every single one.  I only got it because of luck, finding the bad thing at the right time in the right place with an amazing surgeon and his team just happening to be available to me right at this moment, strictly the luck of the draw.

Oh, and because I live in Massachusetts.

In Massachusetts, we are often rude and cold in demeanor, careless of the environment, and even atrocious drivers.  You know what else we do, though?  Bottom line, we love one another enough individually and conceptually to put our money where our politics, philosophies, and religions are and really take care of each other, or at least to try.  Yes, if you live somewhere else in the country, it is very likely that we pay higher taxes than you.  Nobody likes paying taxes.  But nobody here likes people to die of treatable and preventable medical conditions.*

As one who's been on the receiving end in such a big way this time, I cannot express my gratitude.  Thank you so much, Massachusetts, for the amazing, beautiful gift.

I love you, too.

__________
* I don't pay taxes myself right now, personally, because I don't make enough money at the moment, but I have, too, for many many years, and barring catastrophe will again -- because I'm probably going to live.  Because my fellow citizens of the Commonwealth paid for it.  Even without the love, can you see purely economically how much better this works than just telling people to "sink or swim," "you get what you earn," and "those are the breaks"?  Do you see?  Even if you can't feel the love, surely you can see the pragmatism?  More healthy citizens = bigger tax base.  So simple.

Dare I say it seems like a no-brainer?

Me and MassHealth

As I said, I've been trying to write this for a couple of weeks now.  I keep thinking I should explain why I don't have insurance, but it's all bound up in the whole PTSD-over-benefits thing, so every time I try I either go blind with rage or get incredibly tired and have to take a nap.  So let's instead talk about why I'm applying for insurance now.

Nope, can't do that either.  To do that, I have to explain how it came to be that I don't have insurance, all about how my not having insurance is a major bone of contention between my true love and I, how he has offered to pay to cover me many many times but can't actually afford it, how I had really bad insurance through Whole Foods for awhile but at some point was so stressed out over the fruitless efforts I'd put forth to actually collect benefits due me that I developed the aforementioned PTSD and decided I'd rather be poor, uninsured, and constantly in danger for my life -- oh, wait, having cancer already puts me constantly in danger for my life; forgot for half a second -- than insured and spending even one moment of my precious, irreplaceable, and fragile existence that medicine can't really save but only occasionally patch at this time arguing with people about money they owe me but will never, ever pay because they know they can get away without paying it.

Instead, I shall talk only about my interactions with the Commonwealth of Massachusetts.

Quoting from a postcard I recently received in the mail,

Beginning July 1, 2007, a new Massachusetts law says that residents age 18 and over must have health insurance.  With few exceptions, adults must be able to show that they have health insurance by December 31, 2007.  Those who cannot will lose the tax benefit of their personal exemption on their 2007 Massachusetts income tax return, worth $219 for an individual.  Penalties will increase for 2008.

Most adults already have health insurance, perhaps through an employer or a government program.  If you do not, the Commonwealth Health Connector can help you or your employer to find the right health plan.  The Health Connector has new health insurance choices for you and your family.  These plans carry the state's Seal of Approval for quality and affordability.  You can also purchase plans through approved Massachusetts health insurance carriers.  To learn more or purchase a plan, visit www.MAhealthconnector.org.

So what's funny about this postcard is that I received it about four months after applying for state sponsored insurance, for MassHealth in fact.  Everyone received one.  It was a public service notice.  It doesn't say it whether was printed on recycled paper.

There's a lot that's not funny about this.  Sadly, I'm in no condition to get all political on anybody's ass.  That, of course, is thanks to my interactions a few years ago with an approved Massachusetts health insurance carrier, incidentally.  But I'm not going there, not today.

I'm just going to tell my latest little insurance story, the story of my application for MassHealth.   I'm just going to talk about that.

In February, for reasons that have everything to do with my relationship with my true love and absolutely nothing to do with either my cancer or this impending threat of not being able to enjoy a basic tax benefit that won't even apply to me this year if I don't start making dramatically more money in the next month or so, I knuckled down and applied for MassHealth, which is this state's free medical coverage for poor people.

One inducement for me to do this over and above the state of my relationship is that this coverage is better for an amputee than the coverage I had at Whole Foods because prosthetics are covered 100%, and there is no lifetime cap.  There is also, as far as I know, no need to worry about preexisting conditions.  As you may recall, on a grocery cashier's salary, it took me quite some time to pay off the last $1,200 that I was left owing after insurance on the last $6,000 adjustment to my current socket, and the Whole Foods policy through United HealthCare included a $50K per-patient lifetime cap on all prosthetics.  What I didn't tell you is that any of my whole amputation experience was covered at all only because I hadn't been to a doctor for my cancer in five years; if I had been at any time in the previous three years, I think it was, but it might have been two, all of my claims would have been denied, from the emergency room exam to the surgery to the prosthetic.  Yeah, I would have been $40K out of pocket, at a time when I only earned about $9K per year, and I was working full-time, the low side of full-time, but not "mothers' hours" either, weekends and nights, five days a week.

I've got to say that after looking at pretty much the same prosthetics benefits the average Albanian farmer gets from the Red Cross after stepping on a land mine and waiting seven months -- yeah, I mean the one working prosthetic leg per lifetime, though I have already gotten more fittings and adjustments -- and all while working and being insured by my employer's policy, and only because I hadn't seen an oncologist recently, the thought of being unemployed yet not having to live in fear of being permanently crippled by poverty and mishap was pretty enticing.  So I didn't really argue when my true love insisted I get medical coverage somehow for the sake of his peace of mind, because I figured what with being an amputee cancer patient with no job, something could be worked out with the state.

While recovering from a bout of mittelschmerz so severe I thought my ovary was going to rupture, and no way to find out, of course, since I didn't have insurance coverage (hence my true love's stress), I went to the MassHealth website and printed out the generic "Medical Benefit Request Form."  At the time when I applied, it was the same form whether you were applying for MassHealth or for one of the new "affordable" insurance plans to be provided through the Commonwealth Health Connector mentioned on that postcard.  "We have tried to make the Medical Benefit Request easy for you to fill out," reads the website, and it is -- at least, it was for me, five-time college dropout, former legal assistant (for 18 years), fluent in English, even while sitting in bed with a fever over 100°F that had lasted five days.

Complications arose later, about two months later.

Two months later, I received a notice from MassHealth which told me that I needed to provide more information, specifically verification of citizenship, specifically a passport or birth certificate.  My original certified copy of my birth certificate, the one my mommy got right after I was born, and also my passport had been destroyed years before, and I had no replacement for either in hand.

A photocopy of a birth certificate won't do for something like this.  For purposes of legal proof of identity, one has to provide a certified copy, or "authorized" copy as they are sometimes called.  To get such a thing by mail, I (or rather my true love, since I have no income) had to pay $17 (about two weeks' worth of food for a single poor person who eats a largely ramen diet -- yeah, been there more than once), get a proof of identity notarized (which was free at my bank but isn't if you're the kind of poor person who doesn't have a bank account -- yeah, been there, too), and wait.

The notice also said I would have to fill out something called a Disability Supplement which would be mailed later.

I received the Disability Supplement the same week.   Remember how the website assures visitors that MassHealth has "tried to make the Medical Benefit Request easy for you to fill out"?  Yeah, well, that was the Medical Benefit Request.

This is what the Disability Supplement looks like, front --

-- and side:

I started to go blind a little.  I set the packet down and walked away.

For about a month.

A month later, classical music tinkling on the computer, herbal tea in hand, I sat down to actually read the packet.  The cover letter read, inter alia, in boldface, just like this:

If you do not return the form to us within 60 days from the date shown at the top of this letter, we will not consider you to be disabled.  This means we will determine you eligibility as if you are not disabled.

Longtime readers of this blog know that I have a problem calling myself "disabled."  (See category entitled "Learning to be, uh, "disabled," I guess" for details.)  As I have tried to explain many times, and in spite of accusations I have received to the contrary, my disinclination to use this word about myself does NOT come from any desire to distance myself from disabled people or the disability community.  It comes from me not thinking it describes me, and from my profound desire to avoid taking resources away from people who need them more.  I am not in chronic pain.  I can walk in my working prosthetic.  I can even look like a dork running, as opposed, for example, to people who can't even stand.

Because health care is considered a business not a right in this country, there are people getting nickle-and-dimed over things as basic as trach suction kits, yeah, simple maintenance supplies for the systems that let people with neuromuscular complications breathe reliably.

Yeah, really.

In a country like this, I feel very, very uncomfortable saying I'm disabled, taking -- or even being perceived as being interested in taking -- from the shallow pool of basic, life-sustaining resources doled out so very parsimoniously even to people who need them unquestionably.

I am also uncomfortable signing any declaration under penalty of perjury that I am disabled unless I can be sure what definition is being used.  Legally, "disabled" here means "unable to work."  (It says so somewhere in that sheaf of paper pictured above.)  I am not unable to work.

I was perplexed as to why I got this packet.  I turned back that loud first page, and this is what I read:

Yes, it says "You have indicated that you have a disability."

Huh.  Don't remember doing that.

I turned the page.

The first section of the first page asked for "Information about person claiming a disability," stuff like name, address, etc.

The second section read, "We may need to schedule a medical exam for you. [emphasis in original, not just my head]  What are the best days and times for you to go to an appointment?  Please check two or more."  Then there was a box full of tick-boxes labeled things like, "Monday A.M.," "Monday P.M.," "Tuesday A.M.," "Tuesday P.M.," etc.

It was at this point that I started to go blind again.  Or something.  Longtime readers of this blog may understand part of why, though they should bear in mind that they don't even know the whole story.

Here's the upshot:  I do not go to doctors unless there is something specific very wrong with me that I think they can fix.  No no no no no.  No.

No.

I put the form down and didn't so much as touch it for another month, just about.

Come late June, and my 60-day deadline by which to send in my birth certificate and officially claim MassHealth benefits on the basis of legal disability loomed.  I thought and thought about what to do.  I really didn't remember claiming that I was disabled.  And you know what?  I hadn't, not specifically, even though the state had sent me a form assuring me I had.

Actually, what I'd said was that I had a chronic condition and/or a disability.  That was the box I'd checked.

I read the rest of the form.  I was paralyzed with fear.  This is what PTSD over benefits is like.  I could not answer a single question for fear I would answer wrong and be accused of lying or trying to get away with something, or that I would answer wrong and be denied benefits as a result of not guessing the exact right way to say something, because it's not like a law book comes with this form telling you what the range of right answers might be.  I was afraid of being humiliated.  I was afraid of going to jail.  I was afraid I would be made so sick by my interactions with this new insuring agency that I would have to go to the doctor.  All the time I was fearing all these things, every memory I have of dealing with bad insurance companies while working for Whole Foods and getting over having my leg cut off for cancer flooded every nook of my consciousness in minute detail and a solid flash at the same time.

Paralyzed.

I thought to myself, "This is a government service, one I have paid taxes to support in the past, and it exists to help me.  I am going to bet that the people who work for it want to help me and that I can be reasonable with them and be dealt with by them on a reasonable basis.  I can't really move forward without placing that bet, and so even though I don't completely believe this, even though no experience at any time in my existence has led me to believe this, I am going to operate on this assumption."

I decided that I would write a letter explaining my situation and enclosing a medical release form which would allow MassHealth to approach my oncologist, my surgeon, and my prosthetist for information regarding my case.  They had enclosed an awful lot of release forms.  I would just fill some out and mail them in with my $17 authorized copy of my birth certificate.

I wrote a draft.  I wrote another draft.  I was having trouble.  I thought that I would just fill out the releases before doing another draft.

The releases all say they are from the MassHealth Disability Evaluation Service.  The first sentence reads, "This MassHealth Medical Records Release Form is to get medical information from your health care provider so that the MassHealth Disability Evaluation Service (DES) can make a disability determination."

I didn't want the MassHealth Disability Evaluation Service (DES) to make a disability determination.  I wanted the people reviewing my application to know that I had uncured metastatic melanoma and a prosthetic leg that needed to be maintained.

I thought about writing my own releases.  I remembered what I went through with CNA, providers of temporary disability insurance for which Whole Foods employees must opt to pay extra out of their paychecks if they want to have this kind of coverage, which would pay 60% of their wages for a brief time in the event of physical illness or injury which would prevent them being able to work -- to begin immediately after a waiting period had elapsed, of course.  When I hurt myself and had to make a claim against that coverage, I had to write my own release because CNA lied about what information it was required under HIPAA to demand a release for (helpful hints:  NOT HIV status; NOT history of drug and alcohol abuse; NOT college transcripts; NOT for this kind of claim; MAYBE during discovery in litigation should any ever ensue).  I was punished.  There were huge delays in the start of my coverage, and I never did get the last few hundred dollars they still owe me, and after the one truly helpful person in my local HR team (such as it was) got promoted to a different department, partly on my enthusiastic recommendation, Whole Foods refused to go to bat for me and certainly wouldn't make it up to me. But I can't talk about that right now.

Let's just say that when I considered writing my own release now, a release which would have been both useful and valid but would not have included the word "disability," I encountered a little mental block.

I decided to think things over some more and put the project aside again.  I think it was another week.

When I was ready, the project was just as I'd left it:

I had decided what to do.  I sent the following letter:

Dear Sir/Madam:

In late April, after applying for MassHealth, I received two pieces of correspondence from you.  One indicated that I needed to provide proof of citizenship in the form of a U. S. birth certificate issued before my fifth birthday, and the other sent me a big fat packet of forms entitled "MassHealth Adult Disability Supplement," which includes the assertion that I have indicated that I have a disability. 

I enclose an authorized copy of my birth certificate from the County of Los Angeles Registrar-Recorder/County Clerk.  I do not enclose the disability supplement.

I believe you were prompted to send me the disability supplement because I answered "yes" to a question on the initial application which reads, "Do you or any family member have an injury, illness, or disability that has lasted or is expected to last for at least 2 months?"  I answered "yes" because I have had metastatic malignant melanoma for years, still do as far as I know, and as a result of this I am a right transfemoral amputee.  However, I believe the legal definition of "disabled" is "unable to work."  Neither of the conditions I have listed has ever in the past disabled me to the point of being unable to work for more than a period of months, nor do I expect them to in the future as long as the cancer doesn't flare up, my prosthetic leg doesn't break, and I don't encounter prejudice or some pretty severe ADA violations.  Therefore, I do not claim to be legally disabled at this time.

I hope this is sufficient information to allow you to process my application.  Should you require anything further, please do not hesitate to contact me.

Thank you for your time and consideration.

Regards,

It was the best I could do under the circumstances.

A few days later, I received an envelope.  The address was handwritten, and there was no explanatory cover letter inside, only my $17 authorized copy of my birth certificate.

A few days later, my true love and I each received individually addressed postcards as described and quoted early on in this post.

A few days after that, I received the following note from MassHealth:

The MassHealth agency has received and approved your request for more time to get us the citizenship and identity information we need to make a decision about your eligibility for MassHealth.

If you are applying for MassHealth:  you must send us all of the information we need by 08/28/2007.  If you do not send us the information by 08/28/2007, your MassHealth benefits may be denied.

If you are currently getting other MassHealth Benefits:  you must send us all of the information we need by 08/28/2007.  If you do not send us the information by 08/28/2007, your benefit will end.

If you have any questions, call the phone number at the top of this section.  [Emphasis in original.]

The next day, I called the number.  I called too early and was told by a recorded voice when to call back, and that due to high call volume, a human would not answer this number after 3:00 p.m. because that was the time reserved for MassHealth employees to do paperwork.  I called at a time that the voice had specified would be a good time, and spoke to a woman who didn't give her name.

"I don't understand this notice.  I did not make a request for more time."

"Oh, that just means you didn't send us everything we need.  That's the notice that gets sent out for everybody when they don't send us everything; it's automatic."

"I don't understand what else you need.  I sent a letter explaining that I was not claiming disability and enclosing an authorized copy of my birth certificate that I spent $17 getting from the County Clerk in L.A.  Then I got it mailed back to me with no explanation.  Then I got this.  What do you need me to do?"

"Well, let's just see who sent your birth certificate back to you, and we can ask them."  She hunted around in her computer, then said, "Just a minute please," and put me on hold.

Or so I thought.  I thought she was going to go talk to someone.  Actually what she did was transfer me to the voice mail of someone named Esther.  I left a message for Esther requesting further instructions.  Her voice mail told me she would call me back if I left a message.

Of course she never called me back.

Today I received a notice which states, in pertinent part:

MassHealth has decided that the individual(s) listed below are eligible to enroll in a health plan from the Commonwealth Care Health Insurance Program.

[Name:  Me  /  Coverage Type:  Commonwealth Care]

Commonwealth Care is a program run by the Commonwealth Health Insurance Connector Authority (the Connector).  Commonwealth Care is not a MassHealth program, but MassHealth determines who is eligible for the Commonwealth Care program on behalf of the Connector.

Commonwealth Care is an insurance program that offers health-care coverage through certain health plans.

The Connector helps Commonwealth Care members join a health plan and find providers that meet your health-care needs.  Commonwealth Care offers services like preventive care, prescription drug coverage, and hospital and emergency room services.

Based on the information you gave us about your income, you do not have to pay a monthly premium to join Commonwealth Care.

[insert appropriate expressions of relief here]

You will soon be getting a package in the mail with information about
the Commonwealth Care health plans available to you.  You do not need to wait for this package to sign up.  You can enroll in Commonwealth Care now by calling the Commonwealth Care Customer Service Center [numbers and hours].  Customer Service can help you choose the right plan for you.  You can also enroll right now at www.macommonwealthcare.com.

Call Customer Service or go online now to select a health plan and join Commonwealth Care.

Before you enroll into Commonwealth Care, you may be able to get services from a hospital or community health center.  These services may be paid for by the Uncompensated Care Pool.  For more information, call [number].

...

The MassHealth Agency has decided that the following members of your family are not eligible for MassHealth for the following reasons:

[Name:  Me]

Reason and Manual Citation
You do not work for a small business; you do not meet the definition for long term unemployment; you do not meet MassHealth disability rules; you are not under age 19; you are not pregnant or a parent of a child under 19; and you do not meet MassHealth Standard rules for the cervical or breast cancer treatment program.  130 CMR 505.002 505.005 505.006 501.001  [Emphasis in original.]

There's more, instructions on where to see the complete rules and how to appeal, with more forms.

I will try my damnedest to wait and see what wonders lie in store for me at the Commonwealth Care Customer Service Center website before I complain, and before I flip out.  Really, this all sounds very good.  Right?  Good?  It doesn't really matter that I'm not eligible for MassHealth even though I'm a one-legged cancer patient with no job, right?  'Cause they're giving me something else?

Breathing.  Breathing.

Obtaining insurance coverage fulfills my promise to my true love.  Not having to pay premiums at all suits my income.  Now let's just see if it actually covers anything I need, like maintenance on my prosthetic, and what kind of deductible, out-of-pocket numbers, and personal autonomy to make meaningful medical decisions based on life goals and needs vs. state and insurance company budgetary considerations come with it.

I haven't ruled out the possibility that everything might go just fine, that this program is well designed to help me and others in exactly the best way for each person, and that the people working on it want to be of service to me, a taxpayer whenever I have an income.  I'm not counting on it, but I haven't ruled it out.

Fingers crossed if you've got 'em, please.

Search Engine Grab Bag: Singing in the Bathtub Edition

"Singing in d'bathtub
Happy once again
Watching all my twubbles
Go swinging down d'dwain."

-- Tweety Bird (hear it here)

I get a lot of visitors here looking for information on amputee bathing.  Query strings in recent months have ranged from "amputee rubber bath leg" to "bathtub assistance for amputee."  I have already addressed bathing with new sutures, but that's just the tip of the iceberg (or the stump, or something).  At last the day has come when I shall reveal to you all the rest of my one-legged bathing secrets -- or at least as many as I can think of right now.  I may amend this post as I think of other details.

As usual, I have to tell you that I don't know everything there is to know about this subject, that people with different amputations from mine and a different assortment of health complications probably have different issues around all this, and that it is my hope that people with different information, experience, etc., will chime in and contribute all that in the comments, even if only to provide links to other places where it's already written out.   That said, here's my illustrated two cents:

While not exactly cancer-free, I am nevertheless a reasonably healthy, middle-aged right transfemoral amputee with only one prosthetic leg, a good one but not a fancy one, no extra money, no insurance, and little patience.  I'm not frail, and I don't need to take particular care not to fall, but even when I did, when I was recovering from deathly illness and my amputation was a big new wound, simplicity and self-reliance wherever possible were keys to my successful recuperation.

They may not be keys to yours.  For your own safety, you will have to be very thoughtful about this, and very honest.  I will describe as much of my process to where I am now and the reasons for the choices I've made that I can in an effort to help you figure out what is going to be good and workable for your specific situation.  Still, no matter what equipment and/or assistance you will require, the same old rules apply for everyone:

• Be smart.
• Be careful.
• Take your time.

Even for whole-bodied people, the bathroom is said to be the most dangerous room in the house, yes, even more dangerous than the kitchen.  I have known more than one person to nearly bleed to death falling through a glass shower door.  I have heard of people slipping and banging their heads and either dying or coming close to dying just from the resultant head injuries or even drowning in a very small amount of bathwater.  Then there's the electrocution factor, a prized device in murder and suspense fiction.

All this, of course, becomes less the stuff of entertainment and more a real threat when you experience firsthand physical impairments of the sort which reduce your ability to balance, catch, or brace yourself -- impairments like losing a limb, for example.  Abject terror is a reasonable response.  A few good tools can reduce this threat significantly, as will the skill-building you will do as a natural part of your rehab, and then all you'll have to be is consistently cautious.

The first such good tool I ever heard of came to me as a suggestion I read on the LadyAmp site, and it's something I have used every single day since the week I came home from the hospital after my amputation.  It's a handheld shower head, as pictured at left.  You can find an assortment of them at every hardware store.  They are easy to install, range from cheap to expensive, come with longer hoses and shorter hoses, all of which can often be switched out to customize.  They usually have at least two and up to six different output settings, and while the standard kit seems to include a 60-inch/5-foot/1.524-meter hose, I've seen replacement hoses up to 96 inches/8 feet/2.438 meters long.

Frequently, these shower heads can be installed with holders that will keep them in roughly the same position as a fixed shower head until you want to use them.  A style called a "continental" shower head has a button to help you switch between a fixed showerhead and the handheld.  Also, these units sometimes come with holders that can affix to a wall of the bathtub or shower cabinet in a position which can be reached by a person standing or sitting.  I will get to the sitting in a minute.

Meanwhile, a cunning gadget which may be a necessity if you live with someone tall who wants to use the old, fixed shower head just where it is, thank you very much, and doesn't want to have to use up one hand to hold the shower head all the time is this little switch my true love installed.  When it points up (as shown above right), water runs through the fixed showerhead.  When it points to the side (as shown at left), water runs through the handheld shower head.  (If your shower is part of a set-up which includes a bathtub, you will still have to flick the switch on the tub's tap that sets it to shower output, as opposed to faucet output, before using either.)

My true love was supposed to install this while I was in the hospital, but the rehab hospital at which I'd reserved a space in advance was inexplicably full when the time came, and meanwhile I'd decided I really didn't need to go there and in fact couldn't stand another day in any hospital, so I came home ahead of schedule.  So it was a day or two before I could bathe myself even after I got home.  Still, getting this done while you're away is a good idea when you can manage it.  It's nice to be able to come home and just keep right on living.

In the hospital, I used the shower that came with my private room, and I don't remember it having a handheld head.  I do remember it was tricked out with all kinds of grab bars.  If you find these convenient and useful -- and some people find them necessary -- you or someone who loves you can also have these installed in your home.  You or the person managing these details for you should consult with your team of caregivers about what kind and how many.  In my experience, physical therapists, physiatrists, prosthetists, occupational therapists, rehab nurses and social workers all know something about this, or can guide you to someone who does; surgeons not so much.  Also, some places which sell them have people on staff who are well-versed in their safe installation.

What happened to me may also happen to you.  Before being released from the hospital, a case coordinator type of person was sent to consult with me to assess my needs generally.  She is the person who called the one local home health care outfit that had a contract with my health insurance company of the time and ordered things to be delivered to my home that I would need, things like a walker, a reacher, a wheelchair, and a bath chair.  She couldn't order everything, like ace bandages for stump wrapping, because this company didn't carry those things and none local that would deal with my insurance company (United HealthCare) did.  But she ordered what she could.

Things proceeded to get F-ed up from there.  It was not her fault.

There are many, many kinds of bath and shower chair and support.  A common, basic bath or shower chair is a chair with the same kind of adjustable legs that you see on a standard walker or standard metal crutches:  aluminum tubes, rubber stops on the ends, little buttons you push in until the legs are the right length and then they pop into a hole to hold the chair at that height.  The chair portion is hollow plastic with holes molded into the seat and back so that water can drain through.  A bath or shower chair chair might have some kind of rail to keep the user from sliding off one or the other side, and to provide extra places to grab onto for balance.  A bath or shower chair is an appropriate choice if you have had at least one leg amputated and will be bathed or bathing yourself in a shower which is only a shower.

A bath bench is just like a bath chair except that it has an extended seat.  Of course some simple bath chairs are called bath "benches" by their manufacturer, for no reason I can determine, and that makes things a little confusing when ordering.  You might also see this kind of setup called a "transfer bench," "bath chair with transfer bench" or "bath chair with transfer extension."  There is also a kind called a "sliding transfer bench" where the chair part slides along rails from over the floor to the middle of the tub.  I'll say a little more about those in a minute.  Meanwhile, you can see how all these variables make for such a fun adventure in shopping while sick and drugged!  Okay, it's not fun.  That's why there are care coordinators, but even they get it wrong sometimes because there are so many choices and so much confusing terminology.

Regardless of what you end up calling it, the extension on a true bath bench is a flap of molded plastic that is meant to extend over the side of a bathtub.  The extension is either one continuous unit with the chair seat or hooks onto it to create one continuous unit, but either way, it has its own pair of legs which support the end that hangs out of the tub and over the floor.  This allows the user to enter the tub by seating herself on the very safe, very stable extension and then sliding herself over into the chair seat situated in the center of the bathtub.  This is far safer than having either to launch herself off one or fewer feet onto a chair sitting in the middle of a bathtub or transfer herself from the side of the bathtub onto the chair, especially if she is still weak and ill after whatever happened to take her leg(s).

There are also bath transfer systems involving sliding extensions.  These are appropriate for people whose shower unit is part of a bath/shower combination unit and who for whatever reason need or want a little more help getting in and out.  I won't go into them here because I have no experience of them.  My sole point in mentioning them is to give you an idea of the range of choices that exist, devices and prices for every level of ability and every kind of bathroom architecture.  Any web search you run for "bath chair" or "home health" or "assistive devices" will locate dozens of varieties, new and used.

Our shower at the old house, like this house, came as part of a bath/shower installation.  Thus after amputation I wanted a bath bench, a true bench, the kind with the extension over the side of my tub.  I had been very sick, I was weak and wobbly, and this balancing on one leg thing was new and scary, not to mention the fact that for awhile I was still having to do the bathing thing without getting my sutures and dressings wet.  Also, we had a tiny bathroom (and now we have another tiny bathroom), and no one was going to be around to help me every time I wanted to get clean.  I needed an extremely simple, clean solution I could use by myself safely.  My case coordinator type person ordered me a bath bench with a transfer extension.   I don't know what exact language she used while ordering, but that is what we agreed I would need.

I got a bath chair.  No extension.

I sent it back and got a true bath bench, with extension.

I was billed approx. $86.00.  I was expected to pay this out of my own pocket.  My insurance company, you see, the one with the $50,000 lifetime cap on all prosthetic devices, would fully cover a bath chair, but not cover one dollar of a bath bench with a transfer extension molded into its shape.  Since it had a contract with the provider, I would be offered the bench at a reduced price, because that's how insurance works, but I would still have to pay for it myself.  None of this, of course, was spelled out in the multi-hundred-page description of specific coverages and limits my HRA had to photocopy in its entirety for me because no copies were available for individual employees covered under the plan, and no one would budge.  United HealthCare's representative told me United HealthCare would not pay one dollar, even though I had already exceeded my combined annual out-of-pocket limit including deductibles, because it would only cover a bath chair.  The home health care provider told me I had to pay out of pocket or they would take it back.  I paid out of pocket.  I kept getting bills anyway.  The home health care provider moved offices in the middle of all this, you see, and lost some of my paperwork, including but not limited to any record of having delivered an approximately $500 wheelchair to me, so that neither I nor United HealthCare, to my knowledge, was ever billed for that wheelchair (which I still use every day), but I was billed repeatedly for this vershtinkine bath bench that really should have been paid for by UHC.  I mean, please, what was I supposed to do, hop over the bathtub wall onto my bath chair?

Grr.

I know; I've digressed.  I've done it to rant, to get this off my chest, yes, for my own sake, but also as a cautionary tale to you. 

Be careful what you ask for.  Be very specific.  If someone is ordering for you, make sure s/he understands exactly what it is that you need and are requesting.  Make sure everyone knows who is going to pay, how much, and for exactly what in advance.  Even with all these elements being clean and equal, you may still end up with extraneous billing crap due to unforeseeables such as incompetent billing staff and companies that move their offices messily.   So make sure you get exactly what you need, and that you only pay for it once.

Moving right along...

Sitting in your shower chair or on your bath bench, it is a simple matter to take a lovely, refreshing and thorough shower with a handheld shower head (assuming you have hands available to you and a long enough hose).  If you move carefully and/or have careful assistance, you will be perfectly safe and get perfectly clean.  You may like this arrangement so much that this is the arrangement you will always use.

Now, as I mentioned, our last bathroom was tiny, and this bathroom that we use now is tiny.  Each was or is our only bathroom, for both of us.  There is not room in the current bathtub for my true love and my bath bench, nor was there at the other house.  There is also nowhere good to put the bath bench while my true love is showering.  Like much of the amputation experience has proven to be, this part of the bath chair experience was a gigantic pain in the ass.  And then there was the billing crap, which filled me with wrath and hatred.

Then there was the fact that I eventually got "all better."  My sutures healed.  My strength and skills built.  I got sick of taking only showers all the time; I've always been more of a bath person.  Moving that bench around was an even bigger pain in the ass for me on one leg than it was for my true love.  Besides, somehow somewhere water had gotten into the hollow plastic parts, and every time it moved it made a sloshing noise, and I had no expectation that this water was clean water that would remain smell-free indefinitely.

And finally there was the fact that the chair was oriented non-modularly for a bathtub with the faucet/showerhead placed in front of someone entering from right to left, and our new bathtub is oriented for someone entering from left to right.  Which meant I'd have to get another bath bench.  Somehow.

Frankly, I couldn't face it.

So I did a bad thing.

Well, maybe it was a good thing for someone else.

While we were in the process of moving from the old house to the new, I left the bath bench -- which I had paid for once but damn if I was going to pay for it again or have a single other phone call about it with anyone, ever -- out by the curb, as a free donation to whoever would take it.  Yes, I did.  It disappeared in about five minutes.  Also, I did not give the people from whom I bought it once, under protest, and damn if I was going to do it again, my forwarding address.  So that was that.  I am sure I have wrecked my credit over this bath bench.  Of course, I am sure I have wrecked my credit over a bunch of other as yet unpaid bills leftover from my amputation experience and the hideous way I was treated by United HealthCare, but that's another story for another day, a day in some distant future after my PTSD over insurance and billing has subsided to the point where I can talk about it without lapsing into inchoate rage.

The thing was, how would I get in and out of the bathtub from then on?  And how could I safely shower?  We cannot install any kind of rails or hand holds here because the shower/bath cabinet is one of those nasty plastic-walled jobbies that cannot be punctured without causing permanent damage.

Well, actually, it hasn't proved to be a big deal at all.  We have another handheld showerhead on a very long hose, so I can in fact reach everything I have to using that and just sitting in the tub.  And getting in and out, because I am strong and able and do my yoga, is a snap, no hopping required.  I just have to be careful in a couple of very simple ways.  I will demonstrate.

Demonstrating means photos.  In these photos, I am going to show you my naked leg and a half.

Mothers who flock to this site in ones and twos, rest assured that I am not naked in these pictures, it's just my leg-and-a-half and foot.

People who think stumps are icky and gross and that this is horrible but you just can't look away, grow up and run along.

People who will see the stains on my bathtub and become interested in criticizing my housekeeping skills, read this and either suggest something useful, nontoxic and fast or shut your pie hole.

Freaks who have come to this site for impure reasons, you should run along now, too, but if you don't, if you find yourself having impure thoughts upon the mere idea of these photos even though that's not what they're for and feel you just have to look no matter what, please allow me to direct your attention here.  Take a good look at that.  Swap out the red t-shirt for a tie-dye blue and purple one and the anti-fume ventilator for a double-chin with a big zit right in the middle of it, and that, though with much better hair, is pretty much what I looked like today while taking the following photos, some of which reveal in all its glory my naked, fat, hairy leg-and-a-half.  Not sexy.  Not exotic.  Also not accessible, vulnerable, frail, or victim-y.  (Also not to be linked to individually or copied without my express written permission.)  Get it?  Good.  Now seriously, run along unless you need this information to bathe yourself safely and just can't help all that other stuff, in which case I suggest you make your bathwater very cold indeed.

Okay, now the rest of us can get on with it.

I don't know about you, but before my amputation, when I thought about getting into a bathtub, I always assumed I'd do it facing the faucet.  It makes plain, natural sense; you don't want your back to a potentially still-hot piece of metal, and also you might want to adjust the water level or water temperature, and you can't do that easily if you're not facing the controls.

If your bathtub is oriented like mine (as seen in above photo) and all you are missing is your left leg, you can probably still do this.  If, like me, you are now missing your right leg but still have your left leg, you will be better off facing the other way both entering and exiting the tub.  You can turn around once you're in the water, and then turn back around again when it's time to get out.  (And if you have opposite stuff, opposite bathtub orientation and leg amputation, just switch everything I just said around in your head 'til it makes sense, okay?)

See, for maximum safety, you want your healthy, strong, and still existing leg to control your entrance into -- and eventually out of -- the water.  It will control the speed and the angle of descent.  If you plop yourself into the water on your amputated side, what if the water is scaldingly hot and you don't realize it until you're deep in it?  Even if the water's okay, how do you control your landing?  You could go in fast, at a bad angle, and seriously hurt yourself, even drown under the right combination of circumstances.

To avoid this, when I get into the tub, I first seat myself facing outward on the side of the tub, which I first make sure is completely dry so that I won't slip.  I make sure dry towels and my wheelchair are within easy reach.  Then I turn to the left, balance on my residual right thigh and right buttock, and bring my foot up at the same time to brace myself, like so:

When I feel firmly situated and stable, I swing my left leg over the side of the bathtub and test the water with my foot.  If it's a good temperature, then I put my foot down --

-- and, using my leg to lever my weight, gently slide myself into the water, slowly flexing my existing knee and ankle, bracing myself on the tub wall and side.  Of course, I couldn't really demonstrate that while photographing it, and didn't want to get my clothes wet anyway.  I really think from here you can get the idea, though.

See how well balanced I am throughout the process when leading with my whole leg?  That's really what I want you to understand.  Whole leg first, then stump, at least going in; then reverse going out.  That's the safer way.

Do not try this until you are completely healed or if you are not strong enough to get yourself up off the ground under normal, dry, non-bathing circumstances.   Also, if you are going to try this, you might want to try it with an empty tub first.  If you fall, it will hurt, but you will learn your limits and you won't drown.

Make sure the side of the tub is dry before sitting, then survey the area.  Make sure you have dry towels in reach.  Then find your natural hand-holds.  I am on the tall side, and my arms are very long, and you can see how comparatively narrow this tub is, so I can reach the wall across the tub very easily for extra balance.  Also the sink, which won't take my whole weight but is something I can use as a balancing point, is just about two feet from the tub.  My nearby locked wheelchair is another possible point of stability for which I can reach.  On the other hand, the tub faucet, which would seem like a natural were I facing it, is not a good choice, because it can be hot or break off under my weight.

What do you have in immediate reach?  How able are you to support your weight with your arms, hands, and fingertips, and on what secure edges, ledges, and other surfaces?  Find them all, test them all to be sure, and make sure you are very familiar with all of them before you try this with a full tub.

So you've done all that, and now you're in the water having a bath.  And now it's time to get out.  When leaving the tub, something will have changed.  Hmmm, what could it be?  Why, yes!  You will be wet everywhere!  The side of the tub will still be very slippery, though.  Very slippery indeed.

If you add water to this slick, wet surface, and then hoist your heavy, wet body onto it, you are likely to go flying off onto the bathroom floor or back into the tub, and you are likely to hurt yourself or drown if this happens.  Yucky!

So remember those dry towels you were supposed to have handy?  Now is when they come in handy.  Take one and fold it in half across the width, and then in half again across the length, or in thirds if it's a big towel.  You now have a longish rectangle of folded towel.  Drape this lengthwise over the side of the tub so that there is a large enough area of fabric to receive the bulk of your wet bottom and extended residual limb.  It should be narrow enough not to dip into the water, but wide enough to cover the edges.

Hoist yourself up onto this towel the same way you came in, facing the same direction and using the same holds you used entering the tub.  The towel will absorb water off your body and keep you from sliding off the tub side.

Holding onto your bracing points, swing your complete leg up so that your foot rests on the towel.  You can dry it off and then put it on the floor.  If your foot is nice and dry before it hits the ground, then if for some reason you have foolishly not provided yourself a bath mat on which to land, you will not go sliding all over the place on one wet foot when you stand up, nor will your foot pick up any floor crud that may have accumulated between visits from the maid.  (Ha ha ha -- the maid!  I kill myself.)

You will also be able to immediately put your nice, clean, dry foot directly into any waiting shoe or slipper.

Stably situated on your towel, with your foot on the floor, you can now stand, dry yourself using other towels you have placed in reach before bathing, and do whatever else you need to do in the bathroom as you ordinarily would.

This is just what I do, and my utter hatred of complications plus a logistical inability to punch holes in the tub cabinet walls in order to install rails have combined to make it so.  There are many other combinations of tools and techniques to use, though.

Some people shower standing up like they always did, wearing old prosthetics that they can't use for everyday activities anymore.  I'm not sure how they get their stumps clean doing that (maybe you can tell me?) and it's not an option for me anyway because I only have the one leg and no prayer of getting another without insurance coverage I don't have or charity I won't seek, but it works for a lot of people.  Some people love their shower chairs/bath benches.  The one thing I recommend above all others is to start out with the maximum amount of help you can get -- equipment and people, as appropriate to your specific case -- and assuming you get some, taper back on that only with good reason and only as you become genuinely fit enough and skilled enough.

I think that covers that topic, at least enough to give you some ideas for your own situation, whatever it may be.  As I said, I welcome additional tips others who have been through this might like to share.

Meanwhile, happy bathing!  Happy safe bathing, whatever that turns out to be for you.

In Spite of All the Glossy and Sensitive Advertising, Your Insurance Company Does Not Exist To Serve You

Do you ever wonder what would happen to all the people who make their living in doctors' offices and hospitals performing jobs with titles like "billing and coding specialist" if we ever actually got universal healthcare coverage in this country and the health insurance industry one day just dried up and blew away?  Well, picture what would happen to all the people who make a living in Vegas running gaming tables and serving drinks to gamblers if gambling were suddenly illegalized. 

These are threatening pictures for a lot of people, "little" people, not the bosses or the owners, but everyday folk who rely on these trickle-down types of jobs to pay rent and buy groceries and put shoes on their children's feet.  However, this kind of legitimate, personal fear is not why we still don't have universal healthcare coverage in America, just like it's not why there's still greyhound racing in Massachusetts.  Nope.  Gambling and insurance* are both self-perpetuating industries in the United States.  They are set up to profit, yet everyone who buys in thinks s/he can beat the system and walk away a winner.  Buying in, of course, is what responsible people do, because bad things happen to everyone, and no one should expect other people to pick up the tab, right?

This perception is the result of marketing and lobbying, the judicious application of a calculated amount of cash, your cash.  The people who own these industries have made a lot of money, intend to keep this money, intend to keep making more like it, and will spend what portion of it they must to insure, if you will, the status quo.  After all, as long as the status quo remains, there will always be more money.

Let's speak perfectly plainly.  Insurance is a form of gambling.  Just like casino owners, insurance providers go into business to make a profit, and not a slender one, either.  When you purchase insurance, you are making a bet with the insurance company that nothing expensive will ever happen to you.  The funny, twisted thing is, you are actually placing your wager with your own money but on behalf of the insurance company.  If your wager is a good one, the insurance company wins and gets to keep your money.  The only way you can win is if something awful happens to you and the insurance company has to pay for some part of it with some portion of what you paid it.

See how this works?  If nothing expensive (in other words, horrible and traumatic) ever happens to you, the insurance company wins.  It gets to keep your money and use it to make other money.  However, if something expensive (in other words, ghastly and maybe even life-taking) does happen to you while you are still paying premiums, you win!  No, you don't get your money back, but the insurance company, the loser, has to pay to third parties a portion of what you have already paid the insurance company over the life of your policy.  In perfectly ghastly circumstances, the insurance company might even have to pay out to third parties an amount equal to the amount you have paid it plus whatever interest that sum may have accrued while it rested in the insurance company's tender care.  In truly dire circumstances, the insurance company might even have to pay more than this, not just your money and its earnings over time but other people's money and its earnings over time, and you might even get to put some in your own bank account before you die.  Or your heirs might.  That's when you win really big!

Of course, if you stop paying premiums before something wretched and costly to the insurance company befalls you, you do not get back the premiums you have already paid, just like if you walk away from a slot machine before hitting a jackpot the casino cashier does not give you back whatever quarters you put in.  No, the only way you can win at this game is to have something so terrible happen to you that it forces the insurance company to disgorge some of the money you have already given it, or more.

Unless the law forces it to act otherwise, the insurance company will not do business with you if this last scenario seems likely going in.  The insurance company is not an idiot.  Also, the insurance company is running the game.

A Vegas casino can only stay in business, and only wants to stay in business, if most of the people who gamble there lose most of the games they play.  The insurance company can only stay in business, and only wants to stay in business, when most of the people who pay for its services do not use these services most of the time.

Don't ever let anyone tell you otherwise.  And don't raise your hand here just to tell me you work for an insurance company and you help people all the time.  I'm sure you personally do.  However, your company is not in business to help people.  Your company is in business to make money.  Every business makes money by being paid more than it pays.  Your company makes money by being paid to offer but not actually have to provide services to more people than it ends up really having to serve.

The people who started your company started it to get rich, not save lives.  The people who run your company, who set policy and standards, do so to collect the most money possible and pay out the least while still, if it's a reputable company, honoring every one of its commitments to the letter.

In the insurance system, some people do get help, and a very few people get really quite a lot of help.  Likewise, a very few people have what it takes to successfully cheat the system.

Most people who find themselves having to use the services of an insurance company to which they've been paying premiums find themselves having to spend even more time, energy and, yes, sometimes money to collect said services, and most people never get all the help they need.  Some people never get any help at all.  Some people are damaged additionally by the process of trying to obtain help, of trying to collect services for which they have -- or think they have -- paid in advance.

The table for this game is very intricately laid out, you see, and the elaborate rules are not clear going in and have been known to shift during the game.  Most people who play the insurance game lose.  We all keep playing this game, though, hoping we never have to do more than put our money on the table, thinking we can beat the odds, hoping we won't be punished too severely if we ever actually have to ask for any part of our investment back.

Oh, you know what?  That's not gambling.  That's a protection racket.  You can see how I might confuse the two.

Doesn't matter.  We all have to keep playing because there's nothing else.

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* Credit, by the way, especially the credit card business, is also gambling, and also self-perpetuating.  When you apply for a credit card, you are betting the credit-giving company that you will not spend more than you can pay in any given thirty-day period.  If you do, you will have to draw out your payments, and that will cost you interest and fees.  If you don't, the credit card company loses money...

...but not really, because every credit card company charges every business that offers customers the convenience of paying with credit cards a percentage of the total of every purchase completed with one of its cards.  Some cards charge more per purchase than others, e.g., American Express, which is why some businesses only allow payment using certain cards.  The fees businesses pay cover things like purchases made with stolen cards, for which the real cardholder does not have to pay, nor does the merchant under certain circumstances -- but sometimes the merchant does.  Sometimes the default position of the credit card company is that the business could have taken precautions to prevent use of the stolen card, e.g., ID checking.  Businesses also do not get reimbursed fees if someone buys something using a credit card and then returns the item three days later for a cash refund or partial merchandise exchange. 

Most people shop using credit cards.  Businesses have to make up for the surcharges they are forced to pay on every credit purchase.  This means that every time you or I buy something using a credit card, we are personally raising prices for everyone.  To personally help raise the cost of living, we don't just have to default on a debt, thereby forcing the credit card company to do things like raise its various charges across the board in order to maintain its profit growth.  All we have to do is avoid cash.

Oh, and if you're using a check card, a credit card which isn't really a credit card but a debit card you can use in all the same places, just the same way, with a signature not a PIN (and that's what I do every time I purchase something online), you're still part of the problem, because the credit card companies still charge merchants a percentage of every sale.  That's why so many brick-and-mortar stores which let you buy with either credit or debit want you to choose debit.  The merchant pays a fee no matter what, but when you select debit, the fee is lower for the merchant.  (Some banks charge users a fee of $1.00-3.00 on every debit purchase, though, an amount which may be determined by the size of the purchase, and this amount is not shown on your purchase receipt, only on your bank statement, so be careful.)

Of course, unlike insurance, credit cards and check cards are things we can choose not to have and not to use.  It becomes increasingly difficult to live in the modern world without them as the shape of commerce changes.  It's so easy to use a credit or check card.  It's faster in stores, and it's so much easier to shop online.  And with the tiny purchases I make, surely it can't have that big an effect, can it?  How much damage can just one person here and there do?

Where have we thought this before?

(back up)