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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#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.

#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.

#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.

#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.

#5: Happy Hands

What's that? What's in there?!?


Well, hello! A teensy tiny Florida Ringneck snake. Just a wee kitteh...How'd that get in there, anyway?!? :-O !!!


Happy Hands get to do this.


Feels like Christmas around here.

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While I hesitate...

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As a lot of you have deduced, things have not been going well here. We're okay - we'll make it through, we always do. But Lord, it's been coming at us, bad.

The tenosynovitis that permanently crippled my right pinkie finger a few years ago has returned, but with a remarkable difference.

It's tearing into every tendon in my body, it seems, with a speed and virulence that startles us.

For so long, I've tried so hard to write this post. Write anything, really. Losing a connection with the outside world would not be a good thing, just now. While I hesitate and wait for more function in my hands, instead I lose what I just had.

Along with the physical loss of the use of most of my fingers, my left hand, and now the right hand, is the most mind-bending pain I've ever experienced. To touch or accidentally brush against anything can make me cry out despite myself. It's the kind of pain that brings you close to vomiting, to going insane, to chewing into your own flesh like a mortally wounded animal.

Every day a new area of attack emerges. It's spread from my left hand to the right, throughout my left arm, left shoulder, left rib cage, both elbows, both knees - front and back - both ankles, both Achilles tendons, and now both feet. This morning it had hit my left lower back. Tonight, just now, I felt it pulling throughout my left leg. All these for the first time, all in the last few weeks.

I sit helpless in the kitchen. Can't take the turkey meat off the bones for the soup I tried to make. Not now. Wait, watch for an opening when I can use my right hand for that, it still has partial function sometimes. See, I keep forgetting I can't use my hands, keep picking things up and dropping them all over the floor. Which I can't, then, clean up.

Can't wash and trim my veggies, knead bread, open any container, open the fridge or freezer to get a drink. Can't bathe myself. I have to relearn everything, every way my body moves. And it never lasts because the new way I learned today doesn't work when I wake up tomorrow, having lost another tendon.

I write a little here and there, only when I have a little lucky usable time. It doesn't seem to be enough time to finish what I'd call a *post.* So if I have to do this in pieces, let it be.

We're like so many other Americans, living paycheck to paycheck; if one paycheck stops, life can spiral out of control with horrifying speed. We're there. Walter's Worker's Comp was cut off on a spurious basis. Yesterday came a letter saying his disability claim was denied. The basis? They said his disability was from a work injury, so go apply for Worker's Comp.

Yeah.

We'll win on a challenge, I've no doubt. Until then?

Since - November, is it? - we've had no income except my Social Security. There's an income tax refund coming as soon as we get all our tax documents. That's it.

I can't pick up any of our meds right now because we have no funds for the copays. Can't do the laundry; we're out of an essential disinfectant. No voice recognition program for now; the expense is quite small, but we have nothing to pay for even that. I have enough fuel to see my new PCP tomorrow. (You should see me try to drive.) After that? Wait, I guess, for the 28th, when my SSD gets deposited.

Only the kindness of friends has kept us afloat and in groceries. That can't go on. Everyone is hurting financially, including those who are helping us.

One day, perhaps, I'll find a way to thank you for that, for everything you've done for us. It's too much for me today; I cannot do it justice.

I will not be silenced. I will not be silenced.
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Everybody's Got What's Going Around

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A couple of weeks ago I went shopping, went to Sam's and Penn Dutch and Walmart. Places where people go to be careful with their money.

For quite a while, I've known the economy was tanking. Surely this ought to be second nature to me; it was the environment of my profession, back when I worked, and the signs are always very clear to us. Otherwise we could not have done our jobs.

Lots of people, though, stay in denial about it while it's ramping up. Politicians make good use of this. People like me, the true contrarians, get labeled as doomsayers and treated like party poopers. And unpatriotic to boot! heh!

So I tend to keep these thoughts to myself.

But that doesn't mean I'm not aware of what's happening to people's lives. I believe I understand as well as anyone else could. When you make a living seizing commercial buildings and other assets, collateral for business loans and big commercial mortgages and even the occasional house, you get very up-close and personal experience with the terrible damage economic disasters cause human beings.

There's a cycle to it. It's always the same in some ways, always different in some ways. One thing that tends to repeat? That sense of tipping over, of an avalanche, when the burden of knowledge of the damage is finally accepted by the general population.

You can feel it, if you watch and wait. You can sense it. The air vibrates with the change.

People suddenly become scared, and suddenly admit it. Denial time is over.

That's what I felt in the air when I went out shopping, a couple of weeks back.

People are being very brave, too, this time. It doesn't always happen that way. There are a lot of stiff upper lips, of holding shoulders high, of saying *I know that job will come; it'll just take a little longer this time.* Or, *It's surprising how these things can actually work out for the best, sometimes.* Or, *It's not much of one but at least I have a job for now.* Folks are telling their kids, *This Christmas all you get is one video game.* And it seems most parents and most kids are being brave about that, too.

That's a good thing, there, that bravery under fire. I hope this positive attitude holds true. But it may not last, because the depth of this disaster is astounding. It's not nearly over. In fact, it's only just begun.

Most of you know there are times when I don't post much, when I'm too sick or too involved in dealing with my life's issues or without a computer. This time I also didn't go around reading my fellow blogger's posts.

I miss you all when that happens.

Going around trying to catch up a little, I have to say that the downside of this economic disaster seems to be hitting everyone in our little corner of the 'sphere, too. Lost jobs everywhere, and no new ones to hire up. Homes in foreclosure. Checks bouncing, cars getting repossessed. Medical problems heightened. Yes, of course our health gets worse when the economy does a major tank like this. Much worse.

Me, I'll keep on acting a bit childish, whining and complaining here and there, and indulging in fun animal pix and pretty flower pix and general silliness other times. I have to say, it may look a little schizoid here and there. Some really awful things are going on in my life, and I'll combat the downside any way I can. If acting crazy does it, hey, that's cool by me.

I'm here. If anyone wants to email me and complain about all the bad stuff happening to them, I'll answer you. There's a good *crying shoulder* on this battered up body, and besides, it's only fair.

We're all in this together. We WILL make it through to the other side. I really do know what I'm talking about, and I promise you that. We'll come through, and see that wonderful rebirth when the economy starts to turn, and people go back to work and stuff gets made and people earn money and buy things, all that.

It's like spring coming after winter. A bad winter never seems to end...until it does, and spring comes, and the sun melts the ice and the flowers burst forth and the animals come out to play and raise new families and suddenly you don't need a coat any more.

See? That's how I know we'll make it through.

We always do.
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When things are going so hard, I stop and remember why I'm here...

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Life is love. It's love that created this beauty, and love that sustains us all. It surrounds me, out here in my yard. My simple plants and flowers, growing and thriving and putting out this incredible graceful joy for us all to behold.


No matter what happens in our lives, nothing can ever take these visions away from us. Until our days are over, we share in all this every single second of our lives. We're part of it too, we're completely and entirely a part of that life force.


I remember to come outside in the midst of all the difficult, urgent, scary issues I must attend to. When I see these plants and flowers I remember what really matters; it gives my strength back to me.

So many of us are living, these days, with serious misfortune. In the midst of that we may have some great good fortune as well. It doesn't get canceled when things get rough.


I see this beauty, it humbles me and makes me profoundly glad. I hope everyone reading this who's having it rough can feel the blessings of their own good fortune too. They're almost always there, those good-fortune bits. Sometimes we have to set aside our pain and grief and fear in order to look for the good that remains. But why not? When things are going badly anyway, what do we have to lose by taking a deep breath and a half hour to forget it all?


Here and there in my life - not often - I've received a sneer or two for this *stop and smell the roses* bit. Well, screw 'em all for that. I'd much rather be in my shoes than theirs. Their roseless shoes, the poor fools. They could be blessed with a wealth of free, sweet beauty, and they choose instead to indulge in valueless games like *Who's the Most Cool?*

Choose sterility, or riches beyond measure? That's an easy answer for me.
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FABULOUS News! Walter Failed His DOT Physical!

And even better than that: he's found a local disability doctor who has already acknowledged, in writing, that he can't work as a commercial driver.

She's also perfectly willing to say so, and to stand up for him in that onerous process of filing and documenting claims.

Walter's employer, as of a couple days ago, has adamantly refused to reinstate his Worker's Comp claim. They sent the disability insurance paperwork to his new doctor yesterday, so we hope to get it processed soon. Once that's safe, we'll sic our Worker's Comp lawyer on them. What they did is outrageous.

I'll post on the details as soon as I can. And, I'll try to keep you all updated better than I've been.

I'm afraid this series of events knocked the wind out of me. A lot has been going on, and it seemed like the new troubles just wouldn't stop coming. Having a doctor on Walter's side now has settled me down.

I know lots of people are in the same boat these days. I hope they can find a piece of strength to hang on to, like that new doctor for Walter.

Meanwhile, we have no income, and haven't had any for several weeks now. The Nov. 1 mortgage payment was made; my mother, bless her, lent most of it to us. She has no more to spare.

We need to pay around $150 for our meds, and get some food and such. It's hard for me to ask for help. But we need it now, and badly. If any of you can spare even a small amount right now, we would greatly appreciate it.

And I promise you, we'll send it back around to others as soon as we can.