Tuesday, January 31, 2006

Medical Stuff Gone Wrong

This is a little outline of my health problems and meds. No doubt I've left some out.

Extreme broad-spectrum allergies, with:
Chronic bronchitis
Vocal cord dysfunction

Rheumatoid arthritis, with:
Impingement syndrome (both shoulders)
General connective tissue inflammation
Plantar fasciitis (both feet)
Recurring tendonitis

Diabetes (Type 2)
Severe sleep apnea
Mitral valve prolapse
Uterine fibroids
Depression, anxiety

Recurring MRSA
Disseminated HSV-1 w/ Ramsey Hunt Syndrome, & oral & other blood blistering
Recurring Epstein-Barr
undiagnosed granulomatous infection

Here's some of what I use to treat all that:

Prednisone, on alternate days 50mg, 25 mg, 50,...
Flonase nasal inhaler
HCl nasal spray
Azmacort inhaler
Albuterol inhaler
Cortisone cream
Benadryl cream

Fentanyl patches
Viscous lidocaine


Silvadene ointment
Iodosorb ointment

Basic Nutrients multi-vitamin
Calcium/Magnesium/Malic acid
Ester C

I've had my gall bladder out - with its roughly 200 gallstones - and lots of little things like oral surgery, fractures, stitches. Pneumonia, nasty MRSA sinus infections, stuff like that.

In 2004 I was in the hospital for 10 days with a MRSA abscess the size of a small grapefruit in my left foot. This got him named Poor Mr. Foot. By some miracle they saved the foot instead of amputating it. It has a lot of scar tissue, mostly inside, and doesn't work or feel very well. Looks great, though, all things considered. Most of the time, anyway. Unfortunately, the "keeping it" may not last forever. But we'll see.

All this requires a lot of medical monitoring and analysis. Since I'm semi-housebound much of the year, I try to cram most of my medical visits into my relatively *healthy* time of year - midwinter. Lately, that's meant 6-10 appointments per week. Doctor checkups, diagnostics like x-rays and ultrasounds, blood tests, so forth. Then follow-up visits to go over the results of the procedures.

We still don't know what the lumps are that are crawling up my right arm. Neither my ID (Infectious Disease doc) or dermatologist - both superb physicians - had any idea what it was when they looked at it. The derm. doc did biopsies and cultures. The first early results were that it was a granulomatous infection, a chronic type. Often that means a mycobacteria, like a form of tuberculosis that attacks skin. Or - with my luck! - leprosy. The culture takes forever to grow, 6-8 weeks. So you wait and wait and just try not to think about it.

The results finally came in a few days ago. Totally negative.

Maybe I should be thrilled. But what it means is, we still have no idea what the thing is, or how to treat it. It could just be that this tricky culture didn't go well, and they have to do it over. I see the dermatologist again on Feb. 3, we'll go from there.

Then, having had gall bladder-type gut pains again for a good couple of years, I finally went off to see a great new gastroenterologist. A liver/pancreas/near neighbors ultrasound looked good, yay! Next stop was that endoscopy. The preliminary findings were: Extensive inflammation in the esophagus and duodenum; mild gastritis in stomach; removed a benign polyp; took a biopsy. I'll hear about that biopsy in a week or so. I'll call in on Friday just in case it's back fast, and then I wouldn't have to try not to worry all weekend. My aunt died of duodenal cancer, which I hear is quite rare. So I didn't like to hear he took a biopsy.

This is just a little overview, here. Dealing with these health issues gets way more complicated than it looks. And since it's one of the principal reasons I started this blog, I figured it was time to lay out what makes me disabled and half bedridden and full of pain. And yes, sometimes full of anger, too.

And full of the jokes and fun and thought and projects and explorations that allow me to thumb my nose at it all. Without that, life isn't worth living.

I'm here to tell you all - it's worth it. Way, way worth it. Yes indeed.

I want my baby back baby back baby back baby back baby back baby back baby back I want my baby back...

Walter came home last Thursday. Today is Tuesday and he's already dispatched and leaving again.

But we got a lot done this time. Unlike his last time here. He came home for Christmas - a rare event - and promptly went to bed, sick to death with an infection. Poor guy! it was awful. He finally got noticeably better the day before he left.

Such is life with a long-haul trucker.

I miss him already and he hasn't even left yet. Bustling back and forth, loading the car with clean clothes and deep-discount canned peaches and such... --Can you think of anything I'm forgetting? he just asked. --No. But there's always something.

Which is true.

He's gone from being a nervous and uncertain, unaccustomed traveler, to being an efficient unflappable one. Nice. He knows so well that the consequences of forgetting something are usually not a big deal. It's not that he can't buy peaches on the road, for instance. It's just easier in a car, at home, than driving a big truck into an unknown parking lot that's really built to accommodate cars, not big rigs. If he forgets to sign something while home, I have his full power of attorney. I'd rather he do his own signing, though. It just makes things go more smoothly. But the POA means the consequences of our forgetting to have him sign something are minimal.

This all feeds back into learning to live a non-emergency life. Both of us.

We sure enjoy ourselves more on his trips home now. And he's decided to come home more often, for shorter periods, than for a week or two every couple of months.

Our flat-rate cell phone plan costs about $70 a month. Calling each other is free. This is a very good thing indeed, because we spend as much as 6000 minutes a month talking to each other. Some calls last a minute. Some last hours. But it's usually at least five or ten calls a day. It makes all the difference in the world.

And why am I blathering on about this stuff that's only interesting to me and to Walter?

Because it takes my mind off his leaving. He hasn't even gone yet and I miss him already.

I want my baby back baby back baby back baby back baby back baby back baby back I want my baby back...

Today, an Endoscopy

And it went really well. Walter got us there at 6:45, and I was out by around 9 am.

They told me I'd want to take it easy today. Ha! I felt just fine. So good, it surprised me.

I thought I'd enforce my rest period by sitting in front of the computer and just blogging all day. How fun!

I woke up in my computer chair right around noon.

Went to bed and slept the day away. I'm going back there now.

Just thought I'd fill you in.

Sunday, January 29, 2006

Everyone Has Something That's Important To Them

This morning I went out on my usual mildly nefarious activities.

I've been salvaging empty pots and seedling trays and such from yet another defunct South Florida nursery.

The old nursery owners would have been happy to have me do the salvage after they'd moved. They told me it took a long time to get rid of a bunch of that stuff. I screwed up and waited too late, and they'd transferred title before I asked them if I could salvage.

The developers will be bulldozing soon.

Like any good ex-Midwestern kid, I soon found a place to sneak in through a break in the chain link fence. No more hopping over barbed wire, yay! This new route involves winding around some woods, then walking uncomfortably close to some folks' back yards.

It's just a brief stretch. But an elderly gentleman who doesn't miss much - who owns one of those back yards - spotted me my first day, 1/1/06, and every time since.

A few weeks ago, I saw him watching me. I said, Hi! He wanted to know what I was doing. I told him, --Collecting pots and stuff. Things that got left behind and blown around by the hurricane. Did it bother him? --Well, it doesn't belong to you. --I know. But it's just trash. No one wants it, it's just going to get thrown away. I hope you don't mind.

Today I saw him again.

He was standing behind some dense trees and brush, watching me. Hidden. I said, Hi!

He told me I'd been there every Sunday morning since New Year's Day. Didn't I have enough yet?

I said, Well, I'm sprouting a lot of plants. All those hurricane plants, my whole yard got killed off, and we all need new plants now. I'm disabled, I need to have a hobby, and I feel like I'm doing something worth doing here.

He said, --Well, everyone has something that's important to them.

I said, --Yes. And this is important to me.

--But you shouldn't be taking things that don't belong to you.

--I know. I also know it's gonna get bulldozed.

--That doesn't mean it's all right.

--I know that. I know what I'm doing is wrong. I'm not supposed to trespass and take this stuff. I'm not pretending it's right. But if I have to go to jail I will, I'm willing to take the consequences of my actions. You can call the cops if you like.


He thought about that for a while.

I said, --Tell me if this makes you too uncomfortable. I'll stop right now. I'll put all this back and never come again. Just say the word. Let me know, OK?

He didn't say anything. Just stood there watching me.

After a few minutes I said, --Now, just to let you know, I also like to explore and to take pictures. The pots isn't the only reason I'm here. When you were a little kid didn't you like to go exploring on vacant land?

And finally got the very first grin out of him yet. It was fleeting, and he fought it back down and turned his head, walking away, but he didn't move quick enough. I saw that grin. Little kid! Oh! come on now! he was muttering.

Fleeting. But beautiful.

Thank you, Desert Cat

Another thing I spent a good chunk of time on recently was reading Miss Livey's blog.

I found her through Desert Cat. He got all mamacat chivalrous toward some joshing Livey was taking from another blogger. It was meant in a friendly spirit, but looked harsh enough that he took it for mean-spirited instead, and pounced to her defense. Claws unsheathed, the whole nine yards. Magnificent.

Naturally, I wanted to see what all the fuss was about.

So I checked her blog and comments - http://northwoodswoman.blogspot.com/ - and the other blogs involved in the fray, and decided that to really *get it,* I needed the whole story. Besides, her blog was one of the most entertaining, thought-provoking, intelligent, fun, and honest ones I've ever come across. Superb.

So, for only the second time in my life, I sat down and systematically read every single post she ever wrote, from the beginning of her archives to the end, including any comments still on file.

And boy oh boy was it fun!

I went from interested to totally enamored. I couldn't pull myself away. I saw so many parallels in our lives. Our awful health, pain, living on disability, doing our own rehab - even down to the rocks. So much more besides. This all tickled the hell out of me.

The only other time I've reacted that way to another blogger was Desert Cat himself. And his archives are the only other ones I've sat down to read from beginning to end.

I love that interconnection, that circularity. How his actions in regard to her are what led me to that heavenly blog in the first place.

So thank you, Desert Cat.

I'm so proud this man is my blogdad. You, sir, are a gentleman and a scholar.

Saturday, January 28, 2006

Adjustor Heaven After FEMA Hell


I've been in one of the quiet periods I seem to go through from time to time.

If you've sensed a hum of busy-ness emanating from my direction, though, you'll feel it's a different quiet period than usual.

And if you're tired of hurricane news, better stop reading.

A couple weeks ago, the insurance adjustor finally made it out. After FEMA Dave From Hell, the adjustor - I'll call him DB - was one of the most knowledgeable, professional, yet down-to-earth people in his line of work that I've ever met. Courteous and efficient. Fair. All those qualities I respect the most in anyone. Damn good-looking, too.

What an intense relief. The adjustor's the one that counts, you see. Everything I want fixed or replaced or whatever, everything flows from the adjustor's report.

DB spent a lot of time up on the roof. It doesn't look that bad at first glance. As FEMA Dave so carefully pointed out, the trees on the roof didn't puncture through-and-through. They just banged it up a lot. And DB took the time to trace all that out.

I live-blogged Hurricane Wilma. Soon after the winds got real, my 20-foot queen palm started leaning down. She moved ever so slowly, with majestic grace. It took hours. Finally she landed in the canopy of my big orchid tree, splitting its trunk and bursting its beautifully pruned and shaped branches. Then the whole kit and caboodle landed on the roof, together. And pounded and pounded and pounded on the roof over my head.

I was running on inverter power since early in the storm, blogging and watching TV news coverage. I signed off my blog just as the trees were making their final descent. They could easily have come through my home office's south window, a few feet from my chair, so I wanted to move away.

Just then, the east window blew out and the hurricane came in the house.

The TV I was watching is a big old 26" set. It sits right in front of that east window, on top of a little table with drawers where I keep my meds. The broken glass flew by my left ear. I've been picking bits of glass out of the back of the TV ever since.

kdad came to visit over Christmas. He's an unexcitable, classically phlegmatic scientist. But when he looked over the TV and window he said, --That TV probably saved your life.

I hadn't really thought of that before. He's right. The TV blocked the glass that might have decapitated me. Instead the glass flew by my left ear.

Chills went up my spine.

I spent most of the rest of Wilma boarding that window, hacksawing and predrilling plexiglass to size, working hard and fast, listening to the trees pounding the roof over my head. slam! crunch scrape BLAM! scrape scrape SCREECH! ...quiet... SLAM SLAM SLAM SLAM SLAM! groan...

DB asked how old the roof was. I said, at least nine years old. We hadn't put one on since we bought the house. The previous owner'd told us it was *a few years old* - FWIW.

The adjustor said the roof could probably get by with a good repair if it weren't in such bad shape to begin with. Problem is, a roof that worn out won't hold a repair.

Makes sense.

He said he'd put in for a whole new roof and we'll see what the insurance company said. To the credit of their good sense, they approved it.

I can't begin to express how relieved I am.

The adjustor took lots of pix and measurements, wrote up his report, and put together the claim for the roof, fences, and other damage to the structures. They have computer programs that crunch that stuff out. I showed him furniture damaged by branches and glass and water, blown hard and fast through broken windows and under the front door - despite the deep porch roof and the high threshold.

I showed him my fried appliances and electronics, the ironing board that went spinning, walking upright through the office when the hurricane came in, knocking things around. I showed him the weird plumbing problems, how the outside faucet had started a leak I couldn't shut off, even after I attached a brass hose nozzle to block it.

He said to get estimates on contractor repairs, since without funds, I couldn't afford to get anything actually fixed yet. (Not even leaking plumbing.) For the furniture and such, get the repair guys to make estimates for what can be fixed, and list what has to be replaced. If I can't find the exact model of something, use a current item as similar as possible. Back everything up with receipts and photos. Put it all together in one package - not piecemeal - and send it in.


I double-checked with Citizen's. Good approach? Yup. They gave me the address to send it to and language to include in my cover letter. This is a *Supplemental.* [Claim, no? but if they don't want good English, I won't encumber them with it.]

So you see, I've been busy ever since.

I'm almost done with my Supplemental. Then, the intense drive to take care of Hurricane Stuff will finally morph into a more normal-life line of work.

Right in the nick of time. The first wave of really bad tree pollen came through mid-January, knocking me off my feet. My *good* time of year - part of December and January - is already over.

That rollercoaster car just clicked into place on the line. It's moving on out of the boarding station, slowly, so slowly at first, then it just catches, and your heart thuds a beat and even though it's not even picking up much speed yet, you know what's coming down the line...

Sunday, January 15, 2006

Braving the Cold

People with fibromyalgia often experience cold as pain. That goes triple for me. I hate cold with a deep and abiding passion.

When I woke up it was 46 degrees. It has just warmed up to 50!!!

We get a few days like this in South Florida each year. Many people enjoy the rare change to chilly weather.

Not me.

It can get into the 60's to give me a little respite from the heat, but that's about as far as I ever want to go.

When it's cold like today, I usually just stay inside with the heat on. BUT!!!

Sundays, you see, are my days for mildly nefarious activities. Like liberating *trash* from defunct nurseries, as the developers await their demolition and building permits. Once they get going they bulldoze really good stuff and why shouldn't I do some rescues on things that will soon be crushed and tossed?

Okay. I know I'm not supposed to hop that fence. It is trespassing, and I know it. I may get caught. But I'll take the consequences of my actions for the sake of rescuing innocent plants and the empty pots to put them in.

Not to mention, getting some really fab photos in the process.

But it's SSSOOOOOOOOO COLD out there!

Am I gonna go?

Looks like I'd have to substitute long pants for the blue boxers today. That's OK, I know where I put those pants, I found them yesterday whilst housecleaning.

When I look out the window I see brilliant sunshine. God, what a beautiful day.

Just goes to show, you can't judge a book by its cover.

Thursday, January 12, 2006

I Make the Best Collard Greens of Any White Woman in Florida.

Yes I do.

The first batch was slightly more perfect. This time the stores didn't have any smoked pig's feet left. Must have been a special holiday thing.

But regular smoked hamhocks are great too.

I also think the cloves worked a tiny bit better whole than ground. Not sure why. The oils?


This batch has a special secret second spice in it. Onions, too.

No bitterness. Not the tiniest toughness. They're like velvet. Satin. They just melt in your mouth.

They're soooo good, they make you wanna cry.

Man sues chatroom pals: I was humiliated beyond what 'no man could endure'

No, this isn't the very first lawsuit filed under the new legislation making anonymous annoying cyber publishings illegal.

But it's a fun read, nonetheless.


Monday, January 02, 2006

Happy New Year!

Okay. So I'm a couple days late.

It's still a New Year, isn't it?

Heck, it's even still Christmas. I know because Desert Cat says so, and in these matters DC knows all.

I just KNOW Walter will be done with his periodic computer servicing by tomorrow. At least he got my AOL back again.

Just in the nick of time, too. I've been going looney. WHEW!!! what a relief!

Going without for too long can lead me into awful temptations that result in things like getting swarmed by fire ants.

But that's another story.