Friday, July 25, 2008

Off on an Adventure

I'm really excited about this. Just changing environments right now sounds like such a treat.

Tediously, crawlingly slow, we're preparing to go to Missouri.

Walter's employer called him in. They want him to see doctors up there, in their home state, their base of operations.

This may lead to his severance from them. The injury was on May 1st, and he's not getting better any more. Getting whacked in his post-open heart surgery sternum with a 200 pound door in a 50 MPH wind left a mark, as they say. Nothing we can see - but there's chronic inflammation in that sternum now. It prevents him from driving commercially; the seat belt and movements needed to safely operate a big rig just don't go together with the pain.

Walter went to his computer a couple days ago and put up a CD of the CAT scan they did on his chest. For the first time, I saw the titanium wires holding his sternum together. It's not a mesh, as I'd thought. Just wires. Eight wires. They're tied around the two halves of his sternum and pulled tight, trussed up like a pork roast; a couple have what look like loose ends dangling, too. On the image they look mean and sharp.

So outside of our happiness at leaving the local pollens behind, we have mixed emotions about this visit. Some trepidation. Some hope. I don't think they'll ever clear him to work again, I just don't see how they could safely do that. Meaning Walter would be rated as disabled from his occupation.

Which has its pros and cons. I want him home, now. Forever. Yet naturally enough, neither one of us wants the income loss. We don't have any idea what that will be.

He's been paying for short and long-term disability insurance, which is good. But his Benefits Coordinator says that's completely different from Worker's Comp. When a worker is injured on the job and can't work any more, their case is settled through the home state's Worker's Comp laws. What those laws are in Missouri, we're not sure. He'll probably get medical care for this injury for some time. Other than that remains to be seen.

Meanwhile, back at the k ranch, we're both still so sick with allergies we can barely function. We should have been able to leave a week ago. Can't. Servicing the car and packing the bits of food and clothes and medical appliances we need has taken us a week so far.

Two weeks ago I had a little surgery on my left leg, to finally remove that blasted Mystery Thing. The surgeons were great. The Mystery remains unsolved: it was a big cyst, in a capsule, but the lab could find nothing pathologically wrong. Today at 4PM I'm supposed to get my stitches out. And before that, we'll do the last bits of shopping we need for our trip.

With any luck, that is.

It seems gas prices have gone down since I last got out of bed.


Our 1400 mile drive may cost us much less for the waiting.

Friday, July 18, 2008

Coming Up for Air

It's been a while since I've been this knocked down by allergies. I'd sort of forgotten what the full impact is like.

It's a strange feeling to lose days and weeks and months of your life to just drifting along.

I sleep. Most of the time I'm in bed a good 12 hours a day, sometimes more. There's no way for me to recall, unaided, how much time has passed; time has lost its sense, its meaning. Trying to remember time by looking back on significant dates like holidays is often the best I can do.

Sometimes I feel like I'm far adrift, tethered to earth by the most tenuous strand, delicate and fragile as a spider's web. Then I hear your comments like voices whispering to me in the ether, and that strand anchors me, it's strong as steel...

I have trouble communicating. Not just because I'm abed so much; it even happens when I'm out and about and moving around in my quiet world. There's something about the onslaught of all this histamine that leaves me, well, speechless.

My voice is often just a squeak, high-pitched and childish, a voice I dislike hearing from my own self, and can't control. Oh, I want my deep crunchy voice back!

But it's not just the voice, either. If someone asks me a question my mind goes blank. Very simple decisions are hard to make on the spot. It's difficult putting words and sentences together, even while writing. Can I do it? Yes. And I do. Then it saps my energy, sometimes for days afterwards. It takes everything I've got.

And here and there, people who don't understand have trouble being patient with me as my mind searches for the words and phrases, as I struggle to put it together and communicate. I give them all I've got. Everything. They try to mask their impatience and their sense that I'm Just Not Trying Very Hard. They've no idea how much they've just taken out of me, leaving me drained for hours or days afterward, nothing left inside me for anyone else or for myself.

I'm starting to come up for air now, here and there. Usually by mid-July the waves of pollen spikes diminish. So far this year? It hasn't changed much.

Many of you also have allergies; I know that for some of you they're severe. Are you doing worse than usual this year? Does it seem like this hay fever season is making you sicker, so far, or is going on longer than usual?

Patience, I tell myself, patience...

I try not to have things that need taking care of, personal business to attend to. But I do, as do we all; and that's all there is to it.

so...gently, carefully, I get myself up and about, slowly...

Friday, July 04, 2008

Totally Debilitated. And, Cocooning.

Well, it was great while it lasted. And it did, the positive effects of our little escape stayed with us for two or three days.

But after that? We both were knocked off our feet again, even worse than before. It's been the worst episode of debilitating allergies for either one of us in several years. Judging from past years we may perk up soon, the second week of July or thereabouts. We've been decidedly unperky for weeks now. *Very High* weed pollen counts here every day on The Weather Channel pollen forecast.

So we've been staying in bed.

Sometimes, though? You've got to go out. Doctors. Meds. Food.

On Wednesday, June 25, I did something outside of the house for several hours. I have no recollection of what. Such jaunts expose me to unfiltered air and higher concentrations of pollen in the western edge of our towns. The ventures into unsafe territories wear me out, and during bad pollen times I have to limit them, and not do two days in a row. If I can help it, that is.

This time? Nope. The next day, Thursday, I spent in essential shopping. Meds, some food. The last stop on my *route* was Walmart. I was out of guaifenesin (mucous thinner/fibromyalgia treatment). The microwave had died too, and it's so essential when we're sick and weak and diabetic, it absolutely had to be replaced. I had to take care of these things, or I would have come home. I was at the end of my rope, getting dizzy, fatigued.

Inside the store, I noticed something happening that was vaguely familiar, like a face you used to know well, but haven't seen for a while. In my mental state then - severe allergies give us some cognitive dysfunction - I couldn't place it.

Itching. Redness, warmth, bumps, all over my arms, my ears burning and itching and swelling. The palms of my hands. My scars. Face. The knuckles on my fingers. Itching, itching, burning.

Crap. A serious systemic allergic blowout.

And I had no idea what had set it off.

Inside the car, out in the parking lot, was a prescription I'd just filled at Sam's. I always always always carry multiple Epipens with me. Those are the emergency adrenalin shots that save people from dying from anaphylactic shock or asthma. They need to be replaced every year to keep them fresh, although they usually do stay good for much longer. I used to be bad about replacing them because they're expensive and I was so broke. Now my Medicare HMO pays for most of my meds with no copay.

For some reason, I'd remembered last week that the *current* Epipen was 18 months old, and called for a refill. I picked it up at Sam's that very morning. I hadn't yet taken it out of the bag and put it in my purse.

So I had four or five older pens in my purse, which were probably still good, and my fresh one in the car.

Okay. I was covered if I needed it.

It's best not to use them, though. They're dangerous, they can induce fatal heart attacks.

I sat on the Walmart store scooter and thought. Carefully. I had some business up at the Customer Service counter, so I also told the lady there what was happening, so she'd know.

Then I got a 20 mg Prednisone tablet out of my emergency pill container and chewed it up so it would act fast.

I shopped. I was determined to finish what I went there for. Absolutely determined.

A half hour later there'd been no noticeable change so I did it again.

And finally, finally, my palms and scars weren't itching as much. My red swollen heated bumpy forearms got better.

By then I was in the checkout line. I called Walter to tell him what was happening, and that I was starting to get better and would be home soon, that I was okay to drive.

So. I made it home. And I've been sleeping ever since.

I've had some exceptional sleep sessions before. The fatigue of serious allergies is totally debilitating. After a particularly bad episode like on Thursday, it's even worse. Not only do I sleep a long time and often, I've been told I look comatose. I don't move in my sleep, ever.

Once I slept 17 hours without waking even once. That was a record. Usually I'd sleep 8-12 hours, then get up for two or three, go back to bed for a few hours, carry on that way. Before I took high-dose steroids I often slept 18 hours a day, essentially bedridden, for 6 months a year. As the years went by, my *good* months became fewer and fewer.

Finally I was down to around 2 *good* months per year, and 10 in bed. I hadn't really glommed on to that. I was at the doctor's and Walter was with me, and when I explained how I was spending 6-8 months in bed sick now, Walter gently corrected me. --No. You're up to about 10 months. And the *good* months aren't very good any more.

That's why I finally agreed to take high doses of Prednisone. It got me out of bed, it gave me my life back. I knew I was shortening my life, and encouraging diabetes, osteoporosis, kidney and liver damage, a compromised immune system, bruising, weight gain, a bloated *moonface,* facial hair...and the only thing that mattered to me, the only thing I've ever regretted, was not doing it earlier. If I had, you see, I could have spent much more time with my grandmother Helen before she died.


I set another sleep record for myself this time. Between Friday and Saturday, after the onset of that probable early-anaphylactic reaction at Walmart, I slept almost continuously for 24 hours.

And a whole lot every day since then.

Walter hasn't been much better off. So the good thing I get out of this?

Yes, DC. I've been cocooning with my love, snuggling up and sleeping, napping like cats.

Every cloud that darkens my life has at least one silver lining.