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.


Joyce Ellen Davis said...

Dear K, I am so very sorry to hear this--I just KNEW something awful was happening in your life, my friend, and I wish there was something I could do to make it better. I keep you in my heart and my thoughts and prayers. Life is not an easy teacher and sometimes it seems futile and unbearable. I wish you were not going through all this. {{{HUGS}}}

Joyce Ellen Davis said...

PS I'm glad you are both home again. It's been a long, long time....

Pretty Lady said...

Love you lots.

SeaPhoenix said...

Perhaps being around your home and plants will give you some good energies and raise your spirits a bit. I'll be thinking of you and sending positive "pink energy" to ya.

Granny J said...

Dear k, please hang in there. We're all rooting for you.

Jean said...

I don't know what to say.
I'm so sorry.

Sending strength and love to you both.

Jan said...

Dear are in despair, and no wonder. I am so very sorry.

There are no words to convey how badly we all feel, but just know that we are hoping for the best for you and Walter.

It just seems that mere words are so useless, and empty, when you are going through such horror.

Nancy said...

I'm so sorry K. Damn.

Desert Cat said...

This breaks my heart.

I have no words, except 'I'm sorry'.