Saturday, March 21, 2009

Karen was moved

K is in a skilled nursing facility with no internet connection available so she is asking for your patience. Her condition is improving steadily but a tenosynovitis in her extremities got out of control. So she needs therapy and walking aids like braces for her feet.
K feels and appreciates your sportiveness.
Walter

Sunday, March 15, 2009

Oh, Those Trials and Tribulations

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What I really wanted was to put up a nice post about pomegranates. Especially after watching an interesting tidbit about them on The Naked Archaeologist the other day. I mean, who wants to listen to yet another round of dreary medical stuff when there are pomegranates laying thick on the ground, just waiting to be admired?

Or I could tell all y'all about the wonderful visit we had with the Excellent Nephew. He not only spent scads of his free time with his beat up ol' auntie and uncle, he had the good sense to book his return-to-New York flight right when it would be snowed out, thereby gaining us two more fun days together in warm sunny south Florida.

But nooooooooooooooooooooo.

Fun tales of pomegranates and the nephew? No indeed. Instead, here I am once again. Stuck in the time warp loop of hospit-hospit-hospit?!?-thisdoesn'tlooklikehomeanymore-hospit-hospit-hospitulll

argh!

So, okay. If life decided to smack me upside the head with more hospital drama, at least maybe I could be entertaining myself - and you all too - with...say, with a hair-raising adventure involving a huge car-and-truck pileup. While the cab of a big rig dangles precariously over the 60' high edge of that long concrete flyover ramp soaring from I-595 to I-95 northbound, its driver helplessly trapped in the truck's cab as it sways ominously in the air over the little trailer park far below. Ambulances scream away to the Level 1 Trauma Center with the first wave of the injured, all bloody and broken, second responders rushing the Jaws of Life to the scene to free those poor souls smashed into their squished little cars...

Naw.

No, not this time.

Less action, more melodrama? How about a good old-fashioned Victorian era wasting disease, attended by expensive patronizing docs busily pretending that there's No Such Thing as, oh, MS...as we see, gentlemen, at best this is a creation of the innocent imagination of that delicate fairer sex; she can now present an honorable enough cause to avert the animal advances of her husband, who of course cannot help his natural desires, although it might have been wiser of him to govern them, perhaps inspiring her to abdicate her sickbed and return at least to her household wifely duties, which rigors now must necessarily descend to her daughter at a young age...

then have the last laugh on them, proving my point by daintily passing on in that sickbed, pale and shadowed, scented by the flowers mounded everywhere around, a heart-wringing scene to all who come by to pay their respects...

An elegant enough picture if nothing else, eh?

But...no. Me? Now? Nope. Not a bit of it.

No, indeed. No auto crash heroics, no fainting couch theatrics.

Not even the smallest shred of dignity.

Because here I am, tucked firmly into a hospital isolation unit in a bed I haven't left since late last Saturday night, with the worst case of the stomach flu I ever heard of in my entire life.

Yeeeup. Been barfing and crapping my guts out non-stop in the most hideous, horrible, disgusting, stinky, gross, wretched way you could ever imagine, for days without end. People. The worst way you could ever imagine.

Actually, I do think I'll leave it up to your imagination. I really never did think I was cut out to be a crapblogger.

But if I were? I'd have Acidman's Golden Plunger Award away from him in One. Single. Post.
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Sunday, February 22, 2009

Ah, Those Rays of Sunshine

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So here I am for days and days and days, buzzing around various labs and imaging centers and doctors' offices, and bringing a newly ruptured tendon to the ER too. Taking care of business. Medical business. Money business, hanging on the phone for hours each day.

Plus a bit of housekeeping, seeing as how the Excellent Nephew and Sig Other are coming to visit next weekend. YAY! They'll probably stay at Mom's condo, should the Condo Commandos allow a non-first degree relative to stay there while the owner's absent. More comfy for them, less work for us. ;-)

Naturally, should the Condo Commandos bar the way, they'll be more than welcome to stay here instead. We can't offer them a swimming pool or total privacy, but we can extend a real and powerful welcome.

A free sample voice recognition program is awaiting my attention. *Dragon Naturally Speaking* or something. Walter says, --Check it out first. If you like this one, we'll buy the full $99 program. You'll be able to do a lot more with it then.--

It's hard to take care of some of this when you're as broke as we are. Just putting fuel in the car is a planning issue.

And what should happen Friday?

The income tax refund arrived.

Yes it DID.

It won't make us rich. But it's big enough to bring intense relief from financial stress, however temporary that might be.

We could spend it in one day. Easily. Of course. There's a water bill due for some $1100 from a broken pipe under the house. Tens of thousands in medical bills. Money we owe friends and family, and donations back to people who have kept us fed and electrified and on the web these past months.

There are things we need for subsistence, like restocking all the bulk goods we've slowly emptied through the crisis.

Things we both need and desire, though we could live without. *Space bags.* Soaker hoses, pine bark nuggets, flowers. House paint.

So - knowing how precarious things remain - we're holding back, just sitting on it, making a very few small purchases, carefully planned.

And...yes, a wee bit of indulgence too.

On Friday we ordered in a pizza.

On Saturday, Lotus Chinese Kitchen.

And I'm heading out to the yard in just a minute. Laying down those soaker hoses I've hungered after for 13 years.

My day is filled with sunshine.
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Tuesday, February 03, 2009

Oh, EFF! Now I've Lost My Left Swearing Finger!

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ARGH!!! Just when you think you're making progress accepting and adapting to changes in your health, something else comes along and pokes you in the eye.


This is what I get for gloating, huh? I JINXED IT!

And just to rub it in...it still looks like a Swearing Finger from the right direction.


Pointed at ME, that would be.

That's now a *dropped* finger, just like the right-hand pinkie. Not particularly usable; I can't lift it at all. Other fingers nearby crapped out on me too.

When the damage to a tendon is advanced, you lose most or all of the ability to move affected body parts. Before that? It's more a loss of range of motion and intense pain. "Frozen" can unfreeze. Once it's dropped, though...Now I hunt and peck with the left hand, instead of actually typing. Curiously, I feel more patient with it instead of less, so perhaps I'll get to post a bit more, yay!

I'm not sure which tendon it is, because so many in that area are compromised. I may find out soon, though. Tomorrow, finally, I see the great new PhysMed doc and great new PCP again. Finally - finally - it'll set off the rounds of xrays, MRI's, blood tests, and special treatment requests like IgG boosters that might diagnose and treat my melting tendons.

Not to mention, acquire ammo for my suit against the Cipro makers. The first class action lawyers I queried accepted, then declined, my case. They said they don't want anyone who continued taking Cipro after last July, when its chemical group was black-boxed. I think they're throwing away a client who has a nicely documented, visually appealing case, myself. Oh goodness, such a succession of pix I have on file! The last informal tally I ran, over 50 tendons are already damaged. Surely that high a body count helps. Soon we'll see if the next firm on the list agrees.

And!


Suddenly we're blessed with an embarrassment of riches in Lidoderm patches. That nice new medicare HMO, with the low co-pays for these patches that let me type some? The HMO and pharmacy got together with the new Physical Medicine doc and put together a package of 6 boxes. That was only half the 3-month rx the doc had ordered. But, hey. For $40, I'll take it.

Because what you're looking at there is about $2,500.00 worth of patches.

Sometimes I feel like requesting an armed escort home...


And I'm able to get outside here and there, to find pretty critters to play with.

More excellent ingredients in the Cheerful Optimism Maintenance toolbox.
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Friday, January 30, 2009

What We've Got Here is Failure to Communicate...

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Surprise, surprise, surprise.

And quite probably it shouldn't have been a surprise. Surely, far ruder has been going on out there, even from employers who used to treat their employees decently. That relative decency was a big reason why this particular employer had only a 100% annual employee turnover rate, as compared to the 300% industry average.

Well! Things do change. Businesses will do what they feel they must to survive in whatever economy they operate in. I know. Taught and trained and Fancy Degreed and highly experienced I am, plus educated in the School of Hard Knocks, too; not just as an employee, not just as a professional analyst, but as a small business owner with a little payroll roster of my own.

Watch your back, folks. Same as it ever was: it isn't just what your employer does, but how they do it, that'll leave marks on your back.

When Walter's Worker's Comp claim was terminated, and then the disability claim denied (because it was a Worker's Comp claim!), we weren't sure what would happen next. Or even what his status was with his employer. --Wait and see-- we told ourselves, as we slowly but surely gather ammunition, documenting, researching.

We did know they'd be changing several insurance companies effective January 1, 2009. Cigna would replace the old health insurance company (Aetna). We'd been paying the employee portion of the health insurance premium for Aetna, so we needed to know who to send the payments to now, and how much to send.

No new instructions or letters arrived in the mail. We had another important question too. So a few days ago, Monday the 26th I think it was, we called the Benefits office at Walter's employer.

--Hi! We were wondering - Even if the Worker's Comp department says Walter can work when he can't, he's still being treated for the injury, and Worker's Comp is still supposed to pay for the treatment. We just can't afford to keep paying for the medical treatment ourselves.
--You'll have to take that up with the Worker's Comp department, we have no involvement in that.
--Okay. One other question: Who do we send the health insurance premiums to now?
--Didn't you get the COBRA package yet?
--Uh, no. Why would it be COBRA? Has Walter been terminated?
--Yes.
--When?
--I think it was as of...December 28? Pretty sure. Yes, December 28.
--Okay. [thinking...] Does that mean we have to pay the entire premium now?
--Yes.
--How much is it?
--Well, it depends on which coverage you choose...You didn't get the COBRA package yet? I'm so sorry, I'll call Portland and make sure they get it out right away.

I hung up. Walter and I looked at each other. Absorbed this news. Processed it...

That's not a very nice way to find out you're not employed any more.

Walter was fired because he was badly injured at the workplace. They applied Family Leave Act time at the beginning, while he was supposed to be on Worker's Comp, so his leave ran out. After months of diagnosis and treatment of his injury and the subsequent disabling condition it caused, the employer - or maybe just this one jerk in the Worker's Comp department - decided to get out from under the claim. He cut off the Worker's Comp benefits and instructed Walter to file it as a disability claim.

Why? Because that way, Aetna would have to pay Walter's wage and medical reimbursements, not the employer.

Since it really WAS Worker's Comp, that little game is called insurance fraud.

Hmmm...Better dummy up an alibi, then. If you're trying to brown-nose your boss with this sort of scheme, then triggering criminal charges just won't do. Time to find a doctor to say there's nothing wrong with Walter, to pretend he can drive safely as a commercial driver. In a bad economy it's pretty easy to find someone who'll say what you want them to say, especially if you're sending that Occupational Medicine doctor beau coup bucks in business each year.

And it's perfectly legal - by the letter of the law - to accept the diagnosis of one far less qualified doctor over several highly qualified docs taking care of various aspects of Walter's treatment. Yes indeed! The employer gets to pick and choose.

Of course, a judge must be sensible when choosing which doctor(s) to believe, but hey. Very few employees actually get their case in front of a judge. It's a lot harder to sue -especially, to sue successfully - than you might think. In most states, it's also the only recourse available to the employee if their employer plays fast and loose with the labor laws.

And here we sit, inundated with news of employees driving business into the red with all their PC demands and such.

A couple hours after this phone call the mail came, presenting us with the COBRA package in question. How about that.

The new premium? $355.04 per month.

This was a surprise to Mr. Budget.

Now: Walter must sign up for COBRA and pay a month's premium, plus $70 for the few days Aetna covered between his firing and 12/31/08. Once the employer gets that - postmarked no later than 2/2/09 - Walter will have health insurance, retroactive to his last employed day.

Until then, technically, he has no health insurance coverage.

Which he didn't know at the time he went to the Physical Medicine doctor he's been seeing. No wonder his diagnostic tests and meds weren't approved. Surprise solved.

--Don't have another heart attack yet,-- I told him. --I mean, you WOULD be covered eventually, but the paperwork could be hell and a half.--

On Wednesday my Social Security Disability check was deposited. That was supposed to go toward food and meds and the phone bill and such, but also - finally - for the small but essential funds to put voice recognition software on my computer. Walter's been exploring programs in anticipation of that blessed event.

Ah well...

Today, Friday, the COBRA application and check is ready. We'll send it Return Receipt Requested so we'll have proof of mailing, and proof of delivery, for under $3. There's no need to spend more to overnight it; it won't affect the coverage timing at all.

But wait!

That only takes care of the health insurance. I never did hear how to pay for the disability insurance. I mean, we've been paying that premium for quite a while, and maybe he needs it in place now, right? in case something else awful happens to him?

So we called the Benefits office again today. Told them we're sending in their COBRA application. Asked where to send the premiums for the disability insurance.

--Uh, no no, you can't take that with you once you're terminated. [Well...not a surprise. But it was worth a try.]
--Okay. Oh! By the way - Could we have a letter or something showing that Walter was terminated, and the date?
--No, oh no, we don't send out any letters like that! Oh no! (sounding a bit shocked and indignant at such a question).
--Uh...okay. Um...How do we show proof to the agencies and things we'll be dealing with?
--Oh, they can fax me a Verification of Employment letter. Here's my fax number...

The end. We hung up.

Walter and I did another Look At Each Other thing.

I do realize the workplace is not what it was back in my day. And I promise you, some truly egregious infractions were matter-of-course, common events back then. None of this is too much for either of us to take. Not nearly, not even close.

However! To not tell someone they're fired - letting them find out *accidentally* weeks later, by way of getting a COBRA package in the mail - and then to refuse to send them a letter for their records after they find out that way -

Am I being a little old fashioned here? Or unrealistic, expecting less unkindness than I should?

Or does all that seem as wrong to others as it does to me?

Watch your back out there, folks. The fewer nasty surprises you get, the more you stay in control of your own destiny.
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Saturday, January 24, 2009

Joyce Ellen Davis said...

k, m'dear, I am so sorry you are going through all this pain and infection. I wonder how you manage to stay so upbeat and optimistic. I guess it's kinda like they say in AA--about the courage to change the things you can and the wisdom to know the difference when you can't.

this
from a woman who tackled inexplicable malignant melanoma eating her entire arm
when only in her early thirties
and pregnant with her fifth child
who fought the cancer
fought to keep the arm
fought to keep the child
fought the fear
fought the pain
and gave birth to her miraculously healthy beautiful baby
all alone in the hospital
*without so much as an aspirin,* mind you
because patronizing medical jerks had patted her head
and said
that baby wasn't nearly ready to say *hello*
(despite the well-informed opinion of she who'd experienced birthing a child from that body 4 times already!)
so they fools left this recovering cancer patient to deliver her own fifth child all by herself
completely alone
and then!
upon return, upon seeing the new-delivered child
they fools had the unmitigated gall to do the patronizing head pat thing
again?!?
and she didn't even punch anyone out!!!

nope
instead
coping mechanism
wrote, throughout the ordeal, an incredibly beautiful and moving book
chrysalis
a work of art
wonder-ful
wonder-ful


Do I love that Serenity Prayer? You betcha. Often I say, *I love reality;* and that prayer is all about knowing reality and acting accordingly. It's an important part of the panoply of forces in my Cheerful and Optimistic Maintenance toolbox.

But it's not alone. That toolbox holds lots of different ingredients.

Miss Joyce. Part of how we make it through hard times is legacy.

Do you remember me telling you I'd heard about your book in those years back, heard it was a true work of art, but didn't read it yet? and wasn't sure why?

After I did, a couple years ago now, I finally figured it out.

If I'd read Chrysalis back then, I wouldn't have known the *real* ending. Wouldn't have known if the cancer came back, if the baby stayed healthy and grew up well and whole, if the husband maintained his (wonderful/annoying!) steadfast equanimity and absolute conviction that all would be well, having never considered leaving your side for one second.

And I think I could not have borne the *not knowing.* Wanting, hugely, a Happy Ending.

So. Now it's safe, because it did have that Happy Ending IRL. Knowing that up front, going in, made reading the book the undiluted very great pleasure and wonder it was born to be.

I draw on your legacy. It all gives me strength, you see.
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Thursday, January 15, 2009

#1: Dear Helpers: Thank You. Love, the Hands.

NOTE: This is a series of 5 posts with 4 pix each, in consecutive order (not time-backwards like normal posts). I'll let the story be told with more pix than words this time around.

It's the best way I know to explain what's happening, and why small amounts of donations can make such a big difference in the life of someone who's both sick and broke. It's made the difference between posting and not, this time around.
Tenosynovitis is eating me alive. It's all over my body and expanding every day.

This little series of pix shows how it's affected just my hands. This is why I haven't been posting much. Because when this happens to your hands, and you use them to type posts, you can't.

A person can have a very serious, very painful case of tenosynovitis and have it look like there's nothing wrong. It just hurts and reduces range of motion; then the doc takes an MRI and says, --Whups! Got a problem here...

If you know someone who has a case like that, I betcha someone has already told them, --But it doesn't look bad at all...!!!--


This is what the left hand looks like now on a *regular* day (week of January 12, 2009).


Here's what the same hand looked like just a month and a half ago (November, 2008).


From week of January 12, 2009 - on a bad day this time.


The left hand pinkie finger is starting to twist inward, frozen in place. They call these parts *frozen* when the joints can no longer move. After they're frozen, only pretty drastic measures, like intricate surgery, can restore function - if all goes well, that is.

I'm not a good candidate for surgery any more, especially for such extremely extensive parts. Fingers, hands, wrists, elbows, shoulders, rib cage, knees front and back, achilles tendons, ankles, feet...lots more, but you get the idea.

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#2: Left Hand and Fingers, Frozen in Place


From week of January 12, 2009. Being *double-jointed* meant I could curl my fingers backwards in a round smooth arc. Here I'm trying to do that as hard as I can, and also to bend my thumb at the middle joint. The forefinger, ring finger, and pinkie actually think they're bent backwards, okay?

I can usually still move them at the hand/finger joints a little bit, but I can't straighten out the fingers themselves, even with a monkey wrench. Doesn't work. Forcing them would break either bones or tendons.

Those movements are no longer possible with 4 of the 5 left-hand fingers. The exception? I got to keep some mobility in my swearing finger for a while. Thank you, All Powers that Be.


In some pix you can see odd lumps under the skin. Those are tendons bulging, possibly ruptured already. In this pic, if you look at the back of the wrist, outside margin of the hand, and the outside and inside of the forearm just below the wrist, you can see some of the worst ones. When I move my hands or fingers they bunch and move around under the skin, like big stuff is crawling around in there. Makes the check-out clerks nervous. heh!


They change some, over time and during each day. Here the back-of-the-wrist lump is sort of *glowing.*


Same lump, side view.

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#3: Right Hand, Nov. 2008 and Jan. 2009


Right hand, from November, 2008. You can see the surgical scar and the lump of calcified tissue toward the outside of the hand, from a previous case of tenosynovitis. Elaborate surgery, it was. That was done to repair just one tendon. Just one. It was the outside tendon controlling the pinkie finger. Apparently, pinkies and forefingers have two tendons each, not just one.

The surgery worked great. About a week after it healed, the tenosynovitis - thwarted from its evil designs on my outside tendon - moved into the second pinkie tendon. The hand surgeon says that tendon is about the size of a hair, making it nearly impossible to operate on without damaging it. No more surgery, no can do...so the pinkie no longer moves correctly, and I *stutter* in Sign Language now.


So. The pinkie was *dropped,* permanently damaged from tenosynovitis. Crippled, if you will; that word doesn't bother me any, although I wish it had no cause to be said.

Now it's getting dropped worse. Hmmm.


From week of January 12, 2009. It got so bad so very fast...


From week of January 12, 2009.
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#4: For a $20 Copay...


From late November, 2008.


From the week of January 12, 2009. Yes. It got so bad, so fast.


This sat at Walgreen's for a week, waiting for me to bail it out for a $20 copay. They're a different kind of pain patch, with a local topical anesthetic called Lidocaine. Very expensive - but my new Medicare HMO actually covers them for just a $20 copay... if you have it, that is.


All dressed up and Places to Go. These topical patches are a vital ingredient in my arsenal, one that can make the difference between posting and silence, or getting my meds picked up or not.

Just in case there's any doubt whether I'm happy about getting these patches. If anyone was wondering, and all.

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