Sunday, November 30, 2008

Happy Belated Thanksgiving, Everyone!

Yes, we had a very nice Thanksgiving. Not that we did anything, oh, turkey-ish. We had a quiet restful day instead, which made us both very happy.

Thanks for all the well-wishers who came by here in comments and email. Right back atcha. And I certainly hope that if any of you are among those who Christmas shop on that Fateful Day After the Turkey, or the weekend, you not only Survived but Thrived.

I'll never join your ranks. The ability to enjoy a shopping scene like that is a profound mystery to me. But I've met enough humans who clearly and honestly did enjoy it to accept that they're being truthful. My hat is off to all such out there.

Saturday, November 22, 2008

I've Found a Culprit: Cipro Ruptures Tendons

I am calmer today. Weekends are my *Nothing But Yardwork* times. It's peaceful out there, and the neighbors driving by and the dog walkers and general Front Yard Fan Club have been wonderful. *You're back, you're BACK!!!* They surround me with unexpected sweetness, they see me out there in the yard again and break into these huge happy grins and stop walking and talk to me as I weed and groom the yard, sometimes staying for hours and hours, just visiting. Lovely people. Most of them, I don't even remember their names. Usually I remember the dogs' names though. heh!

Today I picked pea pods from my gorgeous tropical pea vines, of the very very very blue flowers, and got a big pile of precious seeds. Traded plants and news with the guys across the street, who fed me a fabulous cranberry and goat cheese appetizer. I told them if it were MY guests coming I'd eat the whole appetizer before anyone showed up. Raked some, weeded some, trimmed the orchid tree a bit. Slow, slow, gentle.

I'm going to try to keep everyone up to date, even if by short little posts. Fellow bloggers, now you know why I haven't been by your place reading and commenting even after the allergy coma was over for the year. My hand just doesn't work very well any more. I didn't want to say out loud how bad it was; maybe it would get better...but it didn't and probably won't, so it's reality time.

When sitting down at the computer, I used to answer emails first, then read all y'all and comment, then answer comments on my own blog, and then write a post. Now I'm going to re-order my priorities backwards. I've missed communicating with you, it'll be hard to do the emails so much later. But I know, absolutely, that you'll bear with me. I feel blessed, and not because of counting my blessings. Feeling Blessed Without Counting seems to make their value increase exponentially, somehow.

All right. Here's some news.

Walter's been looking into voice recognition software. Being home helps, for some technical computer reasons I'm not up on. With his own health so damaged now, he's become slow like me. It'll come. For either of us to push ourselves too hard is not a good thing these days.

Adapting to a virtually unusable left hand is still harder than I thought it would be. It makes me even clumsier than before. Today, finally, I got no new cuts in my fragile skin. But at the very end of the day I fell. I was using only my right hand to pull the back door shut. It's sticky, you have to give it a good yank shut before it can lock. My hand slipped off the knob and I fell backwards, hard, laid full out on the tile floor. I'll have some bruises tomorrow. That's no biggie. Worse than that, I broke my fall by landing on the bad hand, bending it sharply backward at the wrist - and for once, my splint was off. Tomorrow will tell me how much damage the wrist took.

Walter got me back up. Uh, he has to do this for me from time to time. We automatically adjusted our movements so he went straight up and back without twisting to the side. I was so afraid it would hurt him, but he says the way we did it, he was okay. Oh, relief, relief.

Financial update. The disability and health insurance premium check was already re-deposited by the employer. I'd called in and left a message asking for forbearance...and that call was never returned. They redeposited so very fast, perhaps they were hoping it would bounce again so they could cut us off. But it didn't. With some help from a friend and my last hoarded bits of *mad money,* we were able to cover that sucker in the nick of time. It is PAID, and Walter is still safely insured. We have to do it one more time before November 30. But we'll cross that bridge when we come to it.

The electricity hasn't been shut off yet, and on Monday I may be able to work something out for that.

Chase had sent us a nasty *10-day* letter, demanding payment by the 22nd or they'd call the loan. I phoned in and told them I'd pay on the 26th, when my Social Security check comes. After asking the rep to read the file notes, I reminded him we've communicated with them constantly, we haven't abandoned the house, we haven't been ducking them, we've never exceeded 30 days past due, and every late payment was because of medical issues. Chase told us in the beginning that if we never went over 30 days, we'd have no problem with them. We're more than 2/3 of the way through the special double-payment *repayment plan,* and wouldn't it be better for all parties to keep it going till the end? Of course it would.

This rep, shockingly, was quite nice, and agreed to the four-day extension with hardly any arm twisting at all. Maybe current events have inspired Chase to be a bit more flexible. Good. They're still next on my hit list, because they deserve to be.

And yes, do I long to get back to those current events, and put out Part 2 of that musty dusty history, instead of dealing with this icky health stuff. Patience, k. Patience.

On the house front, we go to mediation with Citizens on our hurricane claim December 9. We've now enlisted the help of our excellent neighbors across the street for that. One is very experienced with insurance matters in general, the other is a great designer for everything to do with living spaces and landscaping, and both are excellent rehabbers. Walter and I are now out of the running for most any physical work.

I want the insurance repair funds to go to someone I both trust and care about instead of strangers, and I know they can handle a lot of the repairs quite well; I've watched them work. They can also assess who to hire for roof contractors and whatnot. Even though I can normally oversee this sort of thing blindfolded and with both hands tied behind my back, I'm obviously too emotionally wrapped up in this house. Sort of like how doctors shouldn't practice medicine on their own family members. It's been three years since Wilma, and I haven't taken care of business properly, which tells me a lot.

Crap. For someone who loves to yammer away talking talking talking on my blog, cutting myself short when the hand says I must will not be easy. It's already That Time. Crap.

Okay. Two last bits: Cipro, an antibiotic I've taken daily for perhaps a year now, got a *black label* warning in July for rupturing tendons. With the exception of the Achilles' Heel tendons, that damage has my name all over it: elbow, hands, shoulders, below the knee. Here's some links.

And - again - I'll say it every single time you folks do this - your comments and the support I feel pouring toward me from you have given me a much better day. You guys are great. Thank you.

Thursday, November 20, 2008

Home Again

We're home, we got back Sunday. We're safe. And home is a wonderful place to be just now.

It's also a dusty mess, and to our horror we discovered we were invaded by pests in our absence. Such a lot of work! The plumbing in the kitchen went out, too; only some great luck and quick action by our excellent friends H and Danny kept the damage down to a minimum. I've been lugging hot water to the kitchen sink to wash dishes ever since.

But the weeds aren't nearly as bad as I'd expected, and I have an orchid blooming. The house cradles me, I suddenly see where the slang came from to call one's house *the crib.*

I need that. I'm sorry to say I have no other good news for you today. So here's the time for a caution: if you're in need of cheery reading tonight, you'd better skip this post. It's dismal.

Hmmm...Long story short: Walter's injury-triggered costochondritis is getting worse all the time. It's progressed to his sides, his back, and his shoulders. We were sent home unexpectedly early, with all worker's comp benefits suddenly cut off - including medical care. Walter's employer appears to be deliberately moving him onto a disability claim rather than Worker's Comp. Why? Because that way they don't foot the bill.

Unfortunately, since I'd relied on certain information about the timing of the Worker's Comp income, the check I'd just mailed for the disability insurance premiums bounced last night. The funds that covered it were suddenly required for gas to drive home. They wouldn't even give us the $186 fuel allowance they did for the trip up to Missouri.

Yesterday I saw my rheumatologist. He said what I'd expected. My entire left hand, all five fingers, wrist, forearm, and possibly shoulder look to be permanently and painfully crippled. Many of the tendons are on the verge of rupturing, and once they do, they cannot be repaired, especially on patients like me. After they rupture, you can no longer move whatever they're attached to, like your fingers.

We were gone for over three months. Three highly qualified Missouri doctors diagnosed Walter with the same condition: a widespread, sometimes debilitating inflammatory condition called costochondritis, which is often triggered by an injury to the chest. Yeah, getting slammed in the sternum with a 200-pound big rig trailer door in a 50 MPH wind will do things like that.

One of its worst characteristics is that it mimics a heart attack.

The last real Missouri doctor was a guy who impressed both Walter and me with his knowledge, skill, judgement, and humanity. He gave Walter two series of 30-40 cortisone shots all over his chest, sides, shoulders, and back. Once I came along and watched. He used this huge long flexible needle, probing for the right spot, and the needle would bend almost in two each time he stuck it in. It looked like Walter was getting stung all over by a huge wasp.

A week or so ago, that doc sent a final report to the employer. He said Walter'd had lots of therapy - the steroid shots, topical analgesics, anti-inflammatories, anti-spasmodics, and painkillers. He was not getting any better, and probably would not improve any more. Diagnosis? Costochondritis, muscle spasms, myofacial pain. Do not discontinue the anti-spasmodics. Do not drive while taking those meds. No commercial driving at all.

Well, the employer didn't like that report. So they sent Walter to a clinic to see yet another doctor, in *occupational medicine.* The employer sends that clinic a great deal of business, hundreds of drivers go there each year. After the exam, even that doc told Walter that he wanted to do a bone scan..

Knowing that would take a week or two to schedule and perform, I mailed the $150 check for Walter's short and long-term disability and health insurance. We'd been picking up his worker's comp check every Thursday or Friday, right on time.

Apparently after the Occupational Medicine doc called the employer with the verbal report, he changed his mind about the bone scan. All of a sudden he said there was nothing medically wrong with Walter, and he was good to go back to work.


Like all truckers, Walter needs a DOT medical certificate to drive. The muscle spasms in his back are so bad you can see them through his shirt. He can't twist to the side. It's not just that the pain abruptly stops him. He simply can't move that way any more. He can't drive taking those meds, either.

When Walter, stunned at this news - he was told in person as he picked up what turned out to be our second-to-last check - explained his medical issues to the Worker's Comp rep, the guy smirked like the cat that ate the canary. Ah. Okay. Of course. That was the plan. It's what they dreamed up to pass the buck to an outside insurer and not have to pay the Worker's Comp benefits themselves.

Yes, we've hired another lawyer, and yes, we will also apply for the disability insurance...and hope they don't exercise their right to cancel it because the premium check bounced.

The lady at their benefits office, who had always been very professional, yet helpful and cordial with me, was noticeably less friendly and open on the phone with me today. I explained the situation to her. She said that since Walter was cleared to drive by the last doc, the thing to do is find a local doc who will again say he can't drive due to his medical condition. We'll apply for the short-term disability, then the long-term after that runs out in 90 days.

So she was all set up and ready for this, too, all clued in. She clearly knew the plan before I called.

Tomorrow Walter visits the DOT medical folks. Unless they're stone cold fools, they will fail Walter on the medical, and not take on the liability of certifying someone to drive a big rig on heavy-duty meds and with limited range of motion and reaction times.

Then we look for a doctor brave enough to tell the truth.

If we're lucky, the disability claim will be approved, and will start soon. It probably will be far less than Worker's Comp. We spent all we had on the fuel to get home. The insurance premium is still unpaid, along with the electric bill, mortgage payment, and my local pain doctor's bill. We scrimped and saved like misers, cooking in the hotel room and staying in there almost continuously for three months, not using fuel to go out and see the sights. It wasn't enough.

As for my hand...

Those of you who read here regularly know some things about me by now. I'm a cheerful person by nature. I have a lot of health problems and I've been through some hardships, like just about all bloggers have. But life is precious to me, I love living and I love my life, limitations and all.

That doesn't mean I never hurt inside. Part of the reason I stay happy so much of the time is because I'm ready, willing, and able to work at it, almost every day.

Right now, that's not easy. I've fallen down on the job.

We will keep on fighting to save the hand. There's one more immunosuppressant we haven't tried before. If that doesn't help, we'll try to see if my Medicare HMO will pay for gamma globulin treatment. As the RA doc said, it takes 3 days in the hospital and costs as much as a car: $25,000. It's the sort of thing my HMO has most decidedly not wanted to pay in the past.

The only option after that is higher Prednisone to keep the inflammation down, mega doses like 100 mg/day. I worked so hard to decrease it down to 20/40 mg/day, meaning 20 one day, 40 the next, then 20 - if you alternate the doses like that, it helps keep the side effects down. Decreasing is painful and sickening, and it's why I spent so much allergic time in bed this summer. The high dose Pred is what got me out of the sickbed I used to live in around 10 months each year. I decided to decrease when my immune system got too suppressed and my IgG tanked..

But when my left hand blew up in Missouri, I doubled the Prednisone right back up again to 40/80. It did bring the inflammation down some, and I still have only one *claw* finger. But the condition is getting worse again.

In that left hand, rheumatoid arthritis has vigorously attacked every joint in every finger, most of the joints in the hand, and parts of the wrist. Tenosynovitis - a sometimes dangerous inflammatory disease of the tendon sheath - has attacked virtually every tendon in the fingers, hand, back of the wrist, and some in my forearm and left shoulder. It may also be behind a terrible sickening stiff neck I got a couple weeks ago, which is only beginning to get better.

The thing is, the tendons are likely to rupture now. They've started bunching up. I have a splint to help stabilize it, because the more I use the hand, the sooner the tendons will rupture. The docs can't prevent it, and also can't repair them once that happens. My right pinkie is already crippled from the same condition. And that was only one finger.

Yesterday I asked the RA doc about trying cortisone shots, and he said the damage was far too diffuse, too widespread. I'm also not a good candidate for surgery any more, even if a hand surgeon was willing to take on such a large project, basically peeling open the whole hand and wrist and all five fingers, and doing many hours' worth of repairs and tendon grafts. My skin is so thin it can't hold stitches much, and the chances of getting it infected with MRSA are far too high.

I'm not always so very strong. As I drove home I thought of these: Plaster jackets. Orchids mounted on wood. Bricklaying. I weed sitting down, but I can't push myself up well with only one hand. It's okay to use as a sort of hook or a holder, that half-dead hand; sometimes I can even grasp objects a bit...but all the ordinary things we do each day I need help with now.

In the car I burst into tears. At every stop light I took whatever action I could think of: deep breaths and an extra Prozac and Xanax and I bit my lips until they bled, because the last thing Walter needs right now is to watch me fall to pieces in front of him. I expected this bad news, I knew it was coming. It's just that having the doctor confirm my worst fears was like a kick in the gut.

That was yesterday, Wednesday. Today I saw my primary. My blood sugar has skyrocketed, consistently reading in the 300's - 400's after I take my morning meds with no food but espresso. As she said somewhat impatiently, of COURSE it doesn't matter what I eat. Diabetes can't always be controlled with diet and exercise, especially not in the presence of high-dose steroids. I will probably have to go on insulin.

I've lived with pain since I was eight and got juvenile rheumatoid arthritis. It got worse every year of my life. Honestly, I believe I can say I have felt both chronic and acute pain in extremity.

Today, the pain from this new tenosynovitis/RA attack is so great that despite my pain meds and hot soaks and massagers and the splint, it makes me cry out in my sleep. If something touches my forefinger by accident it makes me dizzy-sick with agony, unable to breathe, and afraid I'll throw up.

And night after night, I sleep next to this man I love with my whole heart, and watch him try to turn in his sleep and cry out in pain. And there isn't a thing I can do to help him. It breaks my heart.

I know I'll be able to cope with this as time passes by. But today? Today what I feel is grief and despair and fear.