Thursday, May 31, 2007


This trip should have taken about 5 1/2 hours. When we were children, coming to the Northwoods for our camping and fishing vacations, it took more like 8.

Now the highway goes almost all the way up here. And the only little kid in my car this time was me. That makes a road trip quicker too. (Everyone who has to go to the bathroom, go now, cause we aren't going to stop until we get there!)

I set out later than I wanted to. I'm moving slow, tired and sore, and didn't really hit the road until midafternoon.

As I gassed up for the highway in the Far North Suburbs of Chicagoland - paying $3.62/gallon! - I noticed the Saturn's left front tire was a little low. A sensible person may have checked it, or put air in it. Better yet, a nice can of Fix-a-Flat. I love that stuff.

But me? NOOOOOooooo. No, I was just too interested in leaving.

I got on I-94, a tollroad there, and toodled along, happy as a lark to be on my way.

My cell phone rang. I saw the call was from Wisconsin, but I didn't recognize the number. Maybe Livey? I answered.

The funny thing was, the voice was my sister-in-law's voice.

So why was my sister-in-law calling me from a Wisconsin phone number to tell me about how the praying mantises hatched in the school terrarium and got out cause the teacher forgot and left the lid off and hundreds of tiny baby praying mantises escaped into the classroom and got all over and all the kids were running around catching them to put them back in the terrarium and the Big Monkey was so excited she couldn't stop talking about it and...


It was LL!!!

Whereupon, *I* got so excited I almost dropped the phone in the car, and blew past the tollbooth in the EZpass lane, which I don't have an EZpass for. Second time that happened.

Oh well. Priorities here, okay?

Besides, I figured with the scooter carrier in the upright position, the tag was obscured from the rude License Plate Photographers anyway. Probably won't get a ticket in the mail after all. Hmmm. Tempting idea, that...

So I got to hear about the wee babies just after they hatched. LL has 2 more egg cases to go, which had more variable temperature conditions, so they'll surely take a little longer to hatch.

That was fun. Afterwards I made it all the way up to Kenosha just fine.

For those of you In The Know, that's not very far along on this road trip.

I heard a telltale rattling thumping sound...and felt the car pulling to the left...and knew I had a flat. That same damn tire I'd noticed being low.

I saw an exit coming up. Off the exit was a big old Mobile station.

For a lot of reasons, I'd rather drive on a flat than pull over to the side of an interstate. I chose to ruin the tire.

At the gas station I saw some tires up on a rack. Yay!

Gas Station Man told me, Sorry. That's a separate business and he's gone for the day.


Meanwhile, a guy on a motorcycle gassing up there asked if I'd like some help. Yes. Thank you.

He proceeded to change my tire for me and tell me about where to go to get it replaced. Can't go far on that little bitty emergency spare.

Glancing in my car he said, Are you a Deadhead?

Which cracked me up. Because if you saw all my Road Trip stuff crammed in there, it did look like it.

No, I told him. I'm from Florida.

Florida! Oh. Got any weed?

Um, no. Even if I wanted to I wouldn't. Sorry.

He said some other strange things and I started thinking the guy was a little...hinky.

To my relief, I saw a sheriff pull up.

He jollied the Motorcycle Guy along - the tire change was almost finished - and sweetly, gently, talked him into a field sobriety test.

Which he flunked.

Gas Station Man had seen what was happening, smelled beer and figured Motorcycle Guy seemed drunk, and called the cops so nothing bad would happen to me. Nice man, huh?

The sheriff grounded Motorcycle Guy, and I was ready to go. I went inside the station and thanked Gas Station Man like this:

--I'm off now. And thank you. For everything you've done.

He solemnly said, You're welcome.

And off I went to find Ed's Used Tires.

The sheriff's directions were fine. He'd drawn me a little map. But like most locals, he assumed I knew more about his area than I did. Didn't realize, maybe, that 158 street also had a much bigger sign saying, County Road K. Or that it's hard to watch for little street signs when you're pulling over every few minutes to let the 55-MPH drivers by, since I was driving about 25 on this dainty little Spare Emergency Backup Tire.

After wandering a bit, I found Ed's Used Tires in time. They were wonderful. Extremely fast and efficient, and only charged me $25.32, including the $3 disposal fee for the old tire, totally ruined from me driving 2 miles on it.

It took longer for me to tear myself away from playing with all their parrots than to fix the tire. Finally one bird nipped me on the finger - totally my fault, I'd been warned that one was a bit feisty - and I had to go get my Silvadene and bandaids from the car. Time to hit the road again.

By then it was around 7 PM.

I still had daylight for a long time.

So I can't blame the darkness for me missing my exit for I-39.

Nope. All my fault. k the navigator not only took a wrong turn, I was a good way toward Minneapolis/St. Paul before a call from Livey had me thinking I'd better check my maps program. And realized what I'd done.

This was extremely embarrassing.

Well. She worked it out that she'd go to sleep on the couch, telephone by her head, and I'd take a nap in the car if I needed to and call her once I got close.

Now, changing the tire meant all sorts of digging through the stuff in my trunk, and disarranging my careful packing, so I couldn't stretch out in the back of the Saturn on my sleeping bag like usual.


I used some of the 11 pillows in the car to make up a smaller bed across the front seats.

I took my nap a little before Steven's Pointe. Slept like a rock.

When I woke up it seemed lighter now. It started getting light here around 4 in the morning.
So I didn't have to worry as much about hitting deer, like Livey warned me about. Good.

I straggled in around 5 am. Totally wiped. Livey unloaded everything I needed and brought it into the house for me. I could breathe in here! I didn't need to sleep in the tent after all. And she made up my bed with my low-allergy sheets I'd brought from home, and set up my c-pap, and arranged the 11 pillows...and I got in there and remember nothing else.

Livey is wonderful. Her animals are a riot. I'm completely comfortable here. Livey's treating me like the Queen of Sheba. As I was writing this she brought me a great grilled cheese sandwich, all hot and gooey and cheesy with a piece of ham in it, yum!

Her place is just beautiful, too. Full of flowers and great rocks and, oh, everything. I mean, beautiful.

I didn't wake up until around 4 in the afternoon. And I can feel the sleep coming on again. So I must leave you guys now, but I'll be back. Much sooner this time!

Tomorrow we'll go look for a bear.

And oh, what pix I already have.

Thursday, May 24, 2007

The Hearts of Flame LIVE!

This one's finished blooming now, and it's setting seed. The seed stalk is interesting too. Not as pretty as the flower, of course, but it's still interesting to look at.

Now you can see the papery sheaths that hold the separate little flower stalks a lot easier. They've pulled away from the main stalk and they are really strange to touch. Sort of like a dry onion skin, thicker, different texture.

AND!!! Guess what I saw out back!

I've been watching the other plants for signs of that color change. The other two plants in the Western Garden are showing a tiny bit of dark red at the very tips of the larger leaves. I saw that on these two plants in my back yard too and I wondered if it meant something...and sure enough. The hearts on these two are turning to flame. I have TWO MORE FLOWERS coming! Oh BOY, I'm walking on air!

I'll be out of town for a good 10 days or 2 weeks or so, but still, I'll get to see most of the action on these, I'm pretty sure.

Meanwhile, I'm putting things to bed before I leave...(hee hee! bedding plants here, get it?).

Okay. Come on. A little lame humor never hurt anyone.

I'm always glad to see Moss Rose Time come around again. I used to think they would be all-year flowers here, but they aren't, and that's just what it is. I've been shopping with my usual great care, and got a lot of plants for $.99 that often run around $4. Like that. So, for the first time, this year I'll be sure to put in LOTS of regular garden flowers. It's worth it, it really is.

The first flurry of mangoes is at an end. I've gathered a lot of them up and sent them around to some folks, and the timing was perfect: I got to send a lot out to people I really wanted to have some of these great mangoes, and now the first crop is mostly over, and I'm leaving tomorrow on my trek. This one's for Cindi, here. The other nine were just right - I like to have them at varying stages of ripeness so they'll last a bit for the Mango Eater on the other end. But this last mango was quite green, and I figured a couple hours of our Florida sunshine was worth a good two days of Northern sunshine. If you leave the green ones out in the sun it makes a big difference in their sweetness.

So I packed up the whole box except for this last mango. I put in on my #1 most favorite garden rock, this black mica beauty I picked up in Connecticut a few years back. The mail carrier was a substitute and came very late in the day, yay! I worked outside, watching for him, and when I saw him on the other side of the street I wrapped the last mango, put it in the box, put in the final bubble wrap cushion and sealed it. Puttered around for a few more minutes...and there he was.

At first he was not all THAT happy to pick up an unexpected 10# box a block away from his truck, but I sweet-talked him for a minute and he grinned at me and was fine, and proud to be doing his job. He just needed a minute to get over the surprise. The regular carrier has it down to a science now. She checks from across the street to see if there's a box waiting for her, and brings her truck for it when she's done with her delivery loop.

The next crop will be ripe in June and July, so we'll be getting Double Mango Bliss this year.

Leaving tomorrow on my trek. I'm so excited I can't sit still! Dancing around like a little kid who has to pee.

Wednesday, May 23, 2007

I Don't Have Leprosy

But I wish I did.

At least, I wish I could trade it in for the leprosy cousin that I do have.


Because leprosy is virtually 100% treatable now.

Leprosy is a species of mycobacteria. So is tuberculosis, TB.

When the first information on my skin lumps came back as *granulomatous,* probably infectious, probably mycobacteria, that meant it might actually BE leprosy. Or TB.

Some of the newer strains of TB are very resistant to antibiotics. I really, really, really didn't want to have a TB superbug.

And many of the mycobacteria aren't so good to get, either.

But leprosy? Hey. No prob.

It takes about a year of antibiotics to cure it, and they use at least two antibiotics together. People no longer lose bits of body parts. That was way back in the day.

When there's no treatment at all, nerves die from the disease. The loss of sensation meant people simply couldn't tell they had a cut or a broken fingertip or what have you. A secondary infection would set in, eat the flesh away, and voila. No more fingertip.

That doesn't happen any more. Or it doesn't need to. In some very isolated populations in backwards places, for example, leprosy is still looked upon as a judgement from God. Going to the doctor might get you stoned to death by your neighbors. So losing body bits could still happen there. But that would only be - like back in the past - because they aren't being treated with simple antibiotics.

Leprosy is actually extremely difficult to catch. It's so non-contagious that the medicos now think you must have a genetic susceptibility to get it at all. And, that only around 10% of the population even has the leprosy-susceptible gene.

kdad knows a fellow MD overseas who treats leprosy patients.

When she examines them, she doesn't even bother to wear gloves.

And believe you me, this is not because the lady is stupid or ignorant or careless. She doesn't wear gloves because she knows she doesn't need to.

Just like my Infectious Disease doctor. She doesn't wear gloves either.

She just washes her hands all the time. And never ever catches anything from her patients.

So while I'm really glad I don't have a TB superbug, I'd far prefer leprosy to the Mycobacterium chelonae abscessus I do have. Go ahead, google it all up. You'll see why in a minute.

What I have is an *atypical* mycobacteria. M. chelonae abscessus is extremely hard to catch, just like leprosy, but for different reasons. No one needs to be afraid of my myco unless they're also immunocompromised. Badly immunocompromised, like transplant patients taking anti-rejection drugs. Most people's immune systems fight it off easily.

This, like hundreds of other mycos, is all around us all the time. All y'all reading this may well have it on your skin this very moment, along with staph germs and all that other good stuff you'd rather not know was on your skin.

It's kind of like the sausage thing. You may love to eat it, but not want to know how it's made.

When people like me get this particular species of mycobacteria, it can be pretty hard to kill. The reason? Mother Nature graced it with an unusual characteristic: It's naturally resistant to antibiotics.


It was made that way by nature. My CA MRSA and the TB superbug, among others, were created by mankind: they became resistant to antibiotics because those antibiotics were misused.

I'll be on antibiotics the rest of my life now. At present I'm taking two powerful ones at the same time, cipro and minocycline.

The thing is, they still may not kill this mycobacteria. Often, the antibiotics will work on existing abscesses or infected lymph nodes, like they're working on my older infected nodes. But then, for some reason, the germ is perfectly willing and able to move downstream and infect another node. Even in the presence of these powerful medicines. Strange but true. And...often enough, it likes to head for one's lungs.

Possibly as in: k gets weird lung infection and has to go to the Icky Place, which said Icky Place keeps her for 3 days, orders a bronchoscopy to see what's really going on in there - and then, maybe because she's a CA MRSA carrier, and a charity patient and bronchoscopies are expensive, and they're out of beds - well, they kick her loose. They tell her to be sure to get that bronchoscopy done right away. At some other hospital, please, not here at Holy Cross.

The blood tests show it's NOT aspergillus, which is what it looked like. That would have been Not Good.

OTOH...if the myco is in my lungs now? That's most definitely Not Good as well.

I'm thinking about all this not just because of the recent developments about my arm, but because Bane posted a link to an article about leprosy that, unfortunately, was higher on fear factor than on certain of its facts.

Hear this: I was glad to see the link and article. Very. I really like to see information about these diseases out there. I very much want us all to be smarter and safer. Wash your hands. Don't misuse antibiotics. ESPECIALLY don't take them for a virus (like a cold or flu), or for allergies. When you get a bacterial infection, go to your doctor, DO use the antibiotics as prescribed, and finish your bottle like good boys and girls. Keep your diabetes under control too.

This particular article described leprosy as *highly contagious.* This is extremely far from the truth. Quite the opposite: it's so difficult to catch, it's likely that only 10% of people can catch it at all. Those 10%'ers must be exposed to it for a very long time, say in extremely crowded living quarters for years and years, to catch it at all.

Of course I don't like the idea of illegal aliens bringing leprosy here. But just like the bubonic plague, it already WAS here. Leprosy is endemic in California, Texas, Louisiana, and Florida. The last leper colony in America, Carville, is in Louisiana. It moved from Carville to Baton Rouge a few years ago and it's still there today.

Lepers don't actually need to be isolated any more, of course. It's just that some of them would rather hang with their own kind during the recovery period. They stop being contagious at all after a month or so of antibiotics, and are cured after about a year of them. In the meantime, they often like to stay away from the general, not-leper public.

Cause who wants to be treated like a leper?

Except for me.

Tuesday, May 22, 2007

Tuesday Down

Well, Monday night I stayed up all night blogging and reading other people's blogs. So when I finally went to bed around 6 am I figured I'd probably miss the 7:30 am appointment for my car.

Especially when I realized my alarm clock was broken. Broken just enough so I couldn't change the alarm time. Which was set at 8:30 am.

So I figured this was a Message, and I'd better go with the flow.

When I got up, ever so groggy, and called the mechanic's, they were wonderful. We have this really extraordinary place here that kmom found through a neighbor. They are very good, very reasonable, and ethical from head to toe. Just amazing.

I had to vacuum that car inside before I took it in. I HAD to.

So I did.

Finally, around 11:30, I arrived.

They called me a cab to get back home. For once, every single person I know here is either out of town, in the hospital, or interviewing for a highly desirable job. So, cab it was.

Except their stupid dispatcher kept sending the cabbies to the wrong town, and then cancelling the fare without actually calling the mechanic's back to let us know.

It took 3 tries and 1 1/2 hours, but the cab finally arrived. Luckily, I did NOT fall asleep by then.

The Saturn is being made roadworthy, and getting its 60,000 mile checkup, and it's only got 64,000 miles! Good job k! Needs brakes, rotated tires, new windshield wipers, oil change, air filter, spark plugs, transmission filter, timing belt (which runs everything now, apparently, and the alternator was definitely acting up.) A few other things. And wouldn't you know it, just YESTERDAY the cruise control gave out.

For a person with really bad foot problems, a person who has to drive with at least one foot elevated on the dashboard to prevent the Poor Mr. Foot Blue Cantaloupe condition...well, cruise control is a way big safety issue. Driving-wise and health-wise both.

Since I was late, the mechanic's request to the dealer for the cruise control parts was late; and the dealer is out of stock. Means, no fix on that until Friday...and then only if we're lucky.

I'm cutting it closer than I wanted to. Way gone are the days when I'd drive straight through. It's about a 24 hour drive. The Event is on Sunday.

So...tomorrow, middayish, I'll pick up the car with everything done but the cruise control, and hope and pray the parts will arrive Friday am. If not? I'll cross that bridge then.

For everything else? It's a little under $600.


An excellent price, looks very fair to me.


We're straining Mr. Budget to the limit here. But Walter's getting good enough miles, and says he'll be able to get a payday advance if we need it. So, I think we'll squeak by just fine. Hopefully I'll have enough to get some fuel on the way up there, huh? At today's prices no less.

Tomorrow at 8:45 am was supposed to be my ID doc appointment. This would be hard without a car, and because I'm on overdrive getting ready for my trip. This afternoon we found out the referral that was supposed to be good is not. I'll spare you the gory details.

But since we've already suffered terribly at the evil hands of the new Medicare HMO and the idiot primary's incompetent staff - including one day where I waited at the ID doc's for FIVE HOURS for the idiots to do a one-minute task - I've made it clear that without all the correct papers done before the appointment, I'll cancel and reschedule. No more waiting for the one and only person, in a staff of around a dozen or more, who even remotely knows how to process a no-brainer referral. And half the time I call for her, they tell me, --Oh, she's not coming in today...

I cancelled the Wednesday morning ID doc appointment.

I instantly felt Aaaaallll Better! So I'd guess it was very much the Right Thing to Do.

See, it wouldn't have mattered anyway. No way could I fit a 24-hour hospital stay in before I leave on my trip. Not only that, I think I'd feel safer getting my first IgG booster in the hospital as well. I think it's serum-based, which is a big red flag for allergics. And I haven't even found a qualified doc for that yet, much less actually seen them and heard them say, --Why yes. Sure we'll do an IgG shot. No problem!

No rush. I think this week's doc time will be better spent turning up an allergist/immunologist before I go. Simply finding one who really IS an immunologist, as opposed to a doc who just adds that word after the word *allergist,* is not easy.

I have a lot of yard work to do, to put my babies to bed before leaving them during a drought. And housecleaning. And even packing. It used to take me maybe an hour to pack, at most. Now, 95% of it is just medical supplies, and I need to get that done just right. So I'll start a couple days before, like many perfectly reasonable travelers do anyway.

I'll stay on overdrive for a while, maybe through Sunday I think...but I want very much to keep you all updated, because this is some really great fun I'm planning here.

Fun is GOOD.

So Far So Good

I saw Dr. K, the RA doc, today.

When he walked in the exam room I looked in his face and said, --Fuzzy wuzzy was a bear...

and he grinned. He's growing out his beard and 'stache.

I asked, --Does your wife like it?

and I got a pretty enthusiastic --Yeah!-- and one grin and two head-nods back. He's a laconic guy. That's his equivalent of your usual person bouncing off the walls in joy.

I told him, --Walter goes back and forth, so it's always interesting.

Dr. K really seemed to like the idea of an IgG booster. Really liked it. --A good idea,-- he says. --Good idea. I'd like to hear how that goes. (Me, I'm all proud, cause I thought it up All By My Self.)

And for the first time he also seemed to NOTICE that I'd gone all the way down from 70, 40, 70,... to 35, 25, 35, of Prednisone. This is the guy who hates Pred so much he can't see straight.

That was very nice. Very.

I'm such a sucker for positive reinforcement.

He couldn't refer me to an allergist/immunologist other than the one I was seeing in the early 90's. I explained she got irritated at me for being such a high-maintenance patient, which is understandable. But that she also couldn't deal with me going on Social Security Disability because she felt I was *too young,* and that it was a generally bad idea because it demotivated people from trying to work. And I resented the implication that I had a choice. That I'd suddenly turned so lazy I'd voluntarily give up a significant income and fascinating work, to drown in the poverty and boredom of living on SSD.

Wrong. I half killed myself trying to keep working, even at temp jobs. My SSD lawyer calculated that I lost $24,000 in benefits for my efforts. And every time I worked one week I'd get sick for a week after the job was over; or 6 weeks work, 6 weeks sick, or whatever. Bronchial infections or worse every single time.

In the end no one wanted to hire me any more. I kept passing out at work, or wanting to put on my scary-looking NIOSH mask to breathe, and they'd tell me I was upsetting the clients -- just go home, it didn't matter how great my work was, I scared people, and they didn't want me there any more.

So, Dr. K, it'd probably be best if I didn't try to see her again, that allergist.

But! She's a really good allergist, though, so, good suggestion, thanks. She got some really great allergy-test food reactions from me, wanted to publish pix in the journals and all, that was nice.

He checked range of motion, moving the joints around in his swift and sure way, and said they looked better than they have in a long time. I said, Yes. Some new places, and some new crookedness especially in the right hand fingers, but not nearly as inflamed as they were.

He thinks a lot of the RA areas in my right arm especially might have been infectious in origin, from the mycobacteria, instead of my usual autoimmune RA. He still calls that JRA, for *juvenile rheumatoid arthritis,* and at 49 I'm old enough to be charmed that he calls it that. He can say that all day if he likes.

I'm sure he's right. I've been telling him for almost a year that the right hand's knuckles seemed really different than the other bad joints, they were bumpy and swollen in a different way, and much redder, and itchy sometimes.

I also asked him if he remembered once explaining to me a physiological mechanism that makes pure oxygen relieve inhalant allergies. It was a very interesting point he'd made, because it wasn't about breathing clear clean air, but something else entirely. And I didn't take notes and I've been kicking myself over it ever since.

But he couldn't remember. Drat it all! He said it didn't sound like something he'd say. Not true. I can usually tell when he's run across an interesting journal article and thought of a particular point in immunology for a particular patient. He likes that stuff. Good for me.

So. He said the IgG booster was a good idea, sorry he doesn't do them himself; and he doesn't want to try to add CellCept as an immunosuppressant until this other stuff is cleared up, which is surely a good idea, and all that made me quite satisfied. And he didn't want me back until August! Yay!

This was one of the most pleasant visits I've had with him for a long time. He's very smart and also very straightforward, and when he lets himself, he has a good sense of humor too. I like him for good reason. All I want is not to get yelled at about the Prednisone. And today? I had a wonderful, yell-free, peaceful, encouraging visit.

Yup. I'm such a sucker for positive reinforcement.

Tomorrow, the car goes in the shop. And I'll probably hear about what the scooter company plans to do about my poor much-loved Mr. Scooter, who's been having some issues in his electricals.

Wednesday, I see Dr. C, the ID doc. Hear the plan for the hospitalization and so forth.

And Thursday...Thursday, or maybe Friday, I embark on an odyssey.

I'm leaving the Accidental Hermitage and venturing out into the world for a bit. Heading north, to the Frozen Tundra.

Sunday, May 20, 2007


Since I don't know how to post more than 4 pix at a time, I'm putting these in a long series of posts.

Some people will find the pix gory. I'm showing them to illustrate what it's like to go through a long series of biopsies, and to show what some of these infections look like today.

My computer has temporarily misplaced the photos of the tenosynovitis surgery. But you can still see those, by clicking the links to the posts I wrote around that time.

Well. (deep breath) - We Have a Diagnosis.

Not the lung thing.

The diagnosis is on the mycobacteria.

The infection that's been spreading throughout my right arm for at least three years has finally been identified. The lab report reads: *Mycobacterium chelonae/abcessus group.*

Surfing it up, I saw there are Issues about what its proper Latin name is. Exactly like with plants. (You've no idea what I waded through before I mentally tossed a coin and called my coontie *Zamila pumila aka Z. floridana.*)

The point is, as a rose by any other is this bug. They know exactly what it is. Finally. Finally. This means we can tailor the treatment to kill it. It's not bad news to hear this. We already knew it was a nasty germ. It's really, really good to know precisely which nasty germ it is.

Right on the tail of that piece of news came another one.

My immune system is crashing.

A lot or a little, I don't yet know.

I've been immunocompromised for years because of taking high dose steroids. Prednisone. And just yesterday I found out that opioids are also immunosuppressants. I had no idea. I'm on 50mg Fentanyl patches and go through 40 5mg oxycodone per month, which could be enough for immunosuppression.

Here's the Prednisone history.

I became completely disabled from allergies in 1991. I didn't take any significant or steady amounts of Prednisone for many years, just short term for bad exacerbations, ER visits, like that. My then-RA doc and various allergists urged me to consider taking the high-dose treatment, and I refused for years, because of the side effects.

As time went on, I ended up spending more and more of my life sick in bed. Just from allergies, yes. They really are that bad. Toward the end of my pre-Prednisone days, I thought I was spending 6-8 months per year mostly bedridden. One day, accompanying me on a doctor visit, Walter gently corrected me and told the doc --No, it's actually about 10 months a year, she just doesn't realize it.

And I thought about that, and I knew he was right.

The toll on the body from being universally allergic is stunning. On my good days, it's like a constant case of really bad flu. Have you ever had that, where a bad flu goes on forever and you just can't function? Weak and congested everywhere and coughing and sneezing and itching and aching and can't stay awake. Just moving around is like dragging your limbs through water.

There were times I had to crawl to get to the bathroom. Adding insult to injury, that would hurt my dignity - and my arthritis and fibromyalgia and plantar fasciitis too. It hurts to crawl on tile floors. I laugh and snort at it all I can, but truly, it's not fun. Having to crawl just really gets my goat, it's a thing that's hard to take, hard to stay tough about.

Here's what was worse than any of that.

For a few years, I was blessed by the presence of my grandmother here, my father's mother Helen. I loved Helen. She was a fine artist, and had a pilot's license, and all sorts of other cool stuff. She lived in an assisted living facility in Boca Raton, not so far from me. I had no real responsibilities for her life's needs, just to visit her and have fun. She'd had a stroke which left her speech pretty badly impaired, but she was fairly ambulatory. And she was a joy to be around. She had a wicked sense of humor and a smile that lit up a room.

My father's family is from the Southwest, so when we moved to Illinois when I was 7, I didn't see much of them after that. I got my grandmother Helen here from her assisted living place in Phoenix only because her daughter Ruth died young (in her 60's) from a rare duodenal cancer. Ruth had been helping care for Helen.

But...I was so sick from allergies that sometimes two or three months would go by when I couldn't visit Helen. You see, I not only couldn't drive. I couldn't stay awake. Couldn't walk. I couldn't talk coherently. For me, breathing pollen-laden air is like breathing chloroform.

If I'd taken the Prednisone back then, I would have had so much more time with Helen. Wonderful time, fun time. I lost that and I'll never get it back. She died.

That's why I say my only regret about the steroids is not taking them sooner.

This is not to say I like the long-term damage it does. I'm perfectly aware of the side effects, and always have been. My grandfather Eddie, Helen's husband, was one of the earliest patients treated with steroids. Back in 1958 - the year I was born - he came down with a form of rheumatoid arthritis that was literally killing him. Since he was dying anyway, they gave him cortisone as an experimental treatment. It saved his life. I saw home movies of him throwing away his cane and silently laughing.

It also half-blinded him. They didn't know back then that you have to taper it off slowly. They just stopped it. He still drove a car, but his peripheral vision wasn't very good. My father the MD, and my mother's mother Jean, an RN, used to argue about whether it was the RA that got his eyes, or the steroid withdrawal.

With all the worsening infection issues in the past year or two, I've been slowly but surely decreasing my own Prednisone dose. To combat side effects, I take higher doses on alternate days, so one day will be a high dose day, the next lower, the next higher, like that. At its highest it was around 70 and 40 mg on alternate days. Now, I've got it down to 25, 35, 25,...And I think that's about as far down as I can go. At that dose, I can't move my hands much in the mornings for a good hour and a half. My fingers and wrists are totally stiff. The Pred doesn't just help with the allergies and asthma, but with the rheumatoid arthritis too. It helps it significantly.

Steroids have a lot of benefits for allergic people, of course. That's why they give it to you in the hospital to save your life if you're in anaphylaxis. Why they put it in EpiPens, *bee-sting kits,* like the ones I have scattered all over the house and my purse. And have had to use, twice.

At any rate: Now, for the first time, I'm measurably immunocompromised.

Immunoglobulins - *Ig* - are antibodies. There are five types: IgM, IgD, IgG, IgA, and IgE.

IgG provides antibodies to infection. IgE provides antibodies to allergens. So ideally, to treat allergies, you'd want to target IgE for suppression.

Prednisone, however, suppresses IgG more than IgE. There's no way I've heard of to suppress just IgE.

For the first time, my blood work has come back with a noticeable drop in IgG. It's 544, and the reference range Quest cited is 694 - 1618 mg/dL. So, I'm low.

How significantly low that is, I don't know yet. Or, how much we can do to combat it. I'll have a lot to discuss with the RA doc Monday and the ID doc Wednesday. And while they're both well versed in immunology, still, neither one is the best doc to address something this complicated. For example, maybe IgG booster shots would help. The ID doc doesn't do them. This is the purview of an allergist/immunologist.

When I googled IgG to read up on the effects of low IgG, suddenly so many things made sense. Here's some of the unusual symptoms I've been feeling over the past 6 months or so - symptoms common to low IgG patients:

-Chronic upper and lower respiratory infections of abnormal cause. Hello, weird lung infection and hospital stay. And terrible sore throat yesterday, red and inflamed, maybe thrush. We seem to have ruled out aspergillus for the lungs, and in the low IgG, found a reasonable explanation for what occurred. It matters less what germ it was. What got me so sick was that I couldn't fight most any germ - low IgG.
-Profound headaches. Strange new ones, quite different than I usually get - not a sinus, fever, TMJ, or tension headache. And these new ones are really severe.
-Constant ear infections. That's why I went to the ENT in my recent Doctor Daze week. Off and on, I've had terrible ear pressure problems for several months now, and my hearing's gotten really bad. The pain gets so intense I can't even blow bubbles into my ear like usual to clear the Eustachian tubes.
--Chronic skin infections. Recently, almost every time I went out in the yard, I'd wake up next day with another weird new skin problem. I'm fighting it with various precautions, and I am doing better, but to have this happen is a bit...sobering. Watching your skin burst out in weird red things for no real reason is like something in a horror movie.
--An increase in the *fever sickness,* that array of sweats and chills, fevers and dizziness; and in the blistering from the disseminated HSV it comes with. Lots of new oral blood blisters, lots of new toe blisters.

I just have no immunity to fight ordinary germs right now. The ones that live all around us and on us and in us, but never infect us, are infecting me.

My old allergist, a scientist down at Jackson in Miami, told me a few years ago there was nothing more she could do for me, and basically cut me loose. Just continue the treatment I was on, which my primary can oversee. For that place and time, she was right.

My new insurance only lets me see doctors in Broward County, so I couldn't get to her even if I wanted to. But I'd rather see someone new anyway. It's time for fresh blood. So I'm looking.

Back to the mycobacteria now.

I've had this thing for at least three years. It way predates my blog, which was 2 years old in early April. I remember crying on my blogdad's virtual shoulder about these bumps in my arm for perhaps as long as a year before the blog. And they were there for a while before I started to worry about them.

The mycobacterial infection is highly likely to have triggered the tenosynovitis that's partially crippled my right hand. It's not damaged all that much; it's just that the pinkie doesn't work right because the tendon is *dropped.* The hand has some numbness from the surgery to correct the first tenosynovitis; then, one week after that was pretty much healed, the next tendon over got it.

And that tendon, a second tendon for your pinkie finger, is so tiny and delicate - the size of a hair, I was told - that it's basically inoperable. So now I have the big scar and nerve damage from the first surgery, and the disfiguring big lump of tenosynovitis next tendon over, and a pinkie that doesn't work right.

Something I've only mentioned here in passing is that I speak ASL. Sign language for the deaf. I don't hang out with any *deafies* any more, being a hermit and all, but this was a significant part of my life for quite a while. I was a good signer. To me, ASL is the most beautiful language of all mankind.

And I can't speak it right any more and never will again. I sort of stutter, now, in sign language. That dropped tendon in the pinkie finger of my dominant hand does more than make me do typos on the keyboard here. It's had a significant and permanent effect on my life.

The myco also probably triggered the bursitis in my left elbow. Again, it's a big disfiguring lump. It's also quite painful. It's a kind of pain that gets in the way: every single time I get out of bed, that's the elbow I roll onto to get up. I garden sitting down, and that elbow comes into play in the yard. I have problems extending and bending it, and carrying things, despite the pain treatment. Pain treatment is never enough, folks, not nearly. It's just enough to take the edge off. On a *medium* or average type day, my pain level is around 6 or so - after treatment. (That would be a 9 to a lot of other people.)

Having your dominant arm compromised in both hand and elbow impacts your life. I'm not whining about it here, not yet at least. I'm just stating the facts, okay?

Now add in these lumps of the myco infection in my right arm lymphatics. If you've ever had swollen glands from a strep throat, or any of the other myriad ways your lymph nodes get swollen and tender, then you KNOW what I'm talking about. That shit HURTS.

A series of lumps, infected lymph nodes and also small cysts, runs from above the elbow all the way to my fingertips. Maybe five nodes are so large, and a bit red and scarred, that they're actually visible to the naked eye. By passing my hand over them I can count, today, about...twenty nodes and ten cysts. And I see another new cyst in my right hand.

In late 2005, I finally arm-twisted my vicious Medicare HMO into getting me to a REAL dermatologist - rather than their effing cosmeticians who wanted to *Rejuvenate my Hideous Sun-Damaged Skin!!!* That dermatologist was a true scientist. Another Jackson guy, triple board certified in dermatology, dermatopathology, and one other I can't remember now. Dr. K the World-Class Dermatologist. Literally. He works internationally. His CV is just stunning.

And he cultured one of the lumps. And got nothing.

Well, no culture. They did say it was a granulomatous infection and looked like mycobacteria, which could include TB, leprosy, or a whole slew of rare mycos.

Mycobacteria is extremely difficult to grow in culture, so a culture failure is the norm. Here's how kdad explained it. Remember, he's an MD scientist and microbiologist himself, and one who does a lot of tissue culture.

Myco is *slow growing* and *rare.* Even if you get a good sample, it takes forever for enough cells to grow so that you can actually see them. They are few and far between. So if you're willing to wait for 2 months trying to make it grow - as opposed to many cultures that grow in a few days - you MAY grow enough baby bacteria to see them in the medium in the petri dish, and put a little scraping on a slide and stick it in your microscope. But because they're rare - not many grow in those 2 months - you may move the slide around, looking and looking, and still not see them. They're there, though. So is a needle in a haystack.

He told me there's around a 10% success rate with myco cultures. This means that you will, eventually, get an answer. It means that culturing it over and over is NOT a waste of time; you keep going, and maybe the 10th time is a charm.

But it has to be a good lab, willing to stick with it. See, most labs will throw the culture away after two or four weeks, if it doesn't grow. Myco needs more time. The Quest special projects lab, kdad said, is a good one. Very good. They'll get the materials passed on to them after the local lab sees what they're looking at, and does the preliminary work.

The special lab may be great. However: both the local lab, and the local collection office, leave a great deal to be desired. IMO.

Dr. K in Miami got nothing on that first culture. About a year later, he tried again. Nothing.

I changed insurance and can't see him any more. The good news is, there's a great Broward dermatologist, Dr. G, I've wanted to see for years now. For the first time, he IS on my insurance, yay! AND, my wonderful ID doc does a lot of work with him, sending patients back and forth as they need. AND! As it turns out, the Miami World-Class Dermatologist Dr. K? He is Dr. G's old teacher, and his mentor.

Frankly...I like Dr. G better. He was wonderful when I went in. Fascinated with my case. That's the one where every time I go, his docs in training - he runs a residency program - all grab their digital cameras and take pix of my booboos. They especially like all the *staining,* what looks like bruises, on my legs.

Dr. G biopsied the right arm. He was looking for more than just myco, too; he wanted some interesting fungal tests done. Stuff that, to his glee, he found out Dr. K did NOT do. Man, I like that Dr. G!

He did 5 punches. This, remember, was my 3rd time trying to culture this bacteria.

When he sent the tissue samples to Quest, he did the paperwork with great care, partly because he was putting some duplicate samples in the same vials.

And when Quest got them - they threw 4 of the samples away.

Yes. You read right.


We were all furious, but what can you do? They're gone.

Quest did 2 of the 5 tests on the one specimen they deigned to keep. That meant we only had to repeat 3 of the punches.

So I went back for the 4th set of biopsies.

This is extremely tender tissue here, folks. I mean, it hurts just amazingly. I rest my arm on my workstation on these infected lumps and it's an issue every single time I write a post or comment. Bet you didn't know that, huh?

Since I have fibromyalgia, and thus a seriously overdeveloped pain nerve network, the docs kindly use extra Novocaine. They'll use 10 or 20 shots. That helps. After the first few I don't always feel the needle going in.

What they use to take samples is either a scalpel or a hollow tube, like a little straw, a bit bigger in cross section than an old-fashioned coffee stirrer stick. That red and white striped plastic straw we used to see in the break room at work, don't know if they're still out there or not, I'm a hermit now and have no familiarity with such things any more.

The end is scalpel-sharp. They *punch* it into your skin, dig around to get up to a good half-inch or so of tissue, then take it out of the tube and into a vial for the lab.

My first biopsy in Miami? They just used a scalpel and cut out a big chunk, and stitched it back up, in two different places. One site looked like my disseminated HSV-1 (systemic cold sores); we wanted some proof. It was. One down.

The second Miami biopsy? Just the one sample cut into more than one piece, so a fairly big scalpel chunk, stitched up.

The first Broward culture was five punches, from two different sites. By now they're seeing way too much infection with me, so for safety, to keep it open and draining, they didn't stitch it. That way it leaves big ol' scars, but at least you're less likely to lose your arm to an infection.

To take biopsies from a CA MRSA carrier is a very dangerous thing to do, even once. Cut my skin, and it gets infected. One day, the infection will win, and it'll all be over.

The second Broward culture was three punches, all from the same site.

Most of those eight punches came out of the same giant-sized infected lymph node. It's gone down now, finally, swelling wise. I had three really big nodes around there and they're all smaller. It looks like the permanent antibiotic cocktail I'm on is helping. the same time, I have new infected nodes toward my wrist. One especially, all big and tender. Not good. This bacterial infection shouldn't be spreading in the presence of all that Cipro and minocycline I'm taking every day now.

Okay. The biopsies are done and the cultures are trying to grow. Now, we wait...

2 weeks? nothing...

4 weeks? nothing...

6 weeks? nothing...

8 weeks? nothing...

and the lab is giving up and throwing them away. Again.

I saw Dr. G a couple weeks ago, on that big Doctor Daze week I had. He suggested getting with Dr. C (ID doc) and trying some antifungal treatment, since it had the appearance, at least, of sporotrichosis, a fungal infection. He said, --Since we can't get a culture, let's not let time go by when we can try to treat it based on an empirical diagnosis. I'll coordinate with Dr. C.


My appointment with Dr. C was the next week.

Between those two appointments, another lab result came through.

Quest identified it.

Not by culturing it in a petri dish.

They - get this - they DNA sequenced it.

They put a polite note at the bottom of the lab report explaining how this was not an FDA approved method.

I couldn't possibly care less.

We know what it is.

And we know for sure, now, that it's not leprosy or TB. And I'm so very grateful for that.

I was in the office, waiting for her in an exam room, when Dr. C got the fax for the first time. She came in with a barely subdued sense of excitement, intensely focused. She tried calling Quest to get some more info, but the special lab's in CA and they weren't in yet.

And the minute she saw the name she said, --Ah! Yes. That's very much in keeping with its looks and behavior. This result makes sense to me.-- She's right, too. I googled it.

And one of the characteristic things it does? It looks like...sporotrichosis.

But it's not.

It makes subcutaneous abscesses and infects your lymph nodes. It's, relatively, a fast growing mycobacteria. I described it in an earlier post as a *slow crawl,* talking about how different it looked from the way MRSA spreads.

Dr. C knew, all along, that it wasn't my usual CA MRSA. Dr. K in Miami called it wrong; he thought it was MRSA.

Dr. C wondered if it might be sporotrichosis, but was resevered in her opinion. Dr. G, the Broward dermatologist, was convinced enough that he was ready to start antifungals.

He called it wrong, too.

Dr. C the ID doc? OH, she RULES.

She proposes the following treatment. First, we want to add a 3rd antibiotic to my cocktail. Since I'm so allergic, including to antibiotics, she wants to be safe. She asked me about my reactions to the various allergenic antibiotics on my list, and I told her. There are a couple that are good on this particular myco that I've never tried, so maybe I'm not allergic to those. I also told her that as much as I sensitize to new things, I also DEsensitize over time. So I'm actually willing to try anything except penicillin, even if I reacted to it before.

She said, Okay. She's going to research and think and come up with the most ideal 3rd antibiotic she can. And: put me in the hospital for 24 hours for the first two doses, just for observation, just in case I do react to it.

This, for an ORAL antibiotic.

I really like her style. She's keeping me safe.

Now: Ideally, you want to do a sensitivity test on the germ. Once you culture it, you put it together with different types of antibiotics and see exactly what kills it the best. That's the antibiotic you give the patient.

However: since they DNA sequenced it, instead of growing it in culture, I think that's not gonna happen. And I think that's what she was calling Quest about.

What she wanted to do was see if it was sensitive to at least 2 of the 3 antibiotics she'll have me on. If so? Keep those three. If it were sensitive to only 1, or none? Change them.

Smart plan. Great plan. culture, no can do.

So we'll have to wing it.

And, perhaps, try some IgG booster too.

I've been waiting for this day for a long, long time. For both questions: learning the bad news about the immune system crash, and also, learning what that myco infection really was.

Somehow, though, I'm not as prepared as I thought I would be.


Mark your Target and Shoot: They like to draw outlines on me with a pen. Here, it's to remind the doctor where she found good sources for the biopsies. She'll narrow it down as she goes.


More novocaine.

Lots and lots of novocaine. This went on for quite a while.
Sometimes after a session like this, I have wasp dreams that night.

Shots and Punch

It's finally filling up with so much novocaine, it's distending the whole area out from my arm.


Checking it...

Nope. Needs more novocaine.

Okay. Ready. This is the first punch of the last in the ongoing series of biopsies.

It Gets Bloody

One down.

Another going now.

And on that, I start to make a BIG mess for the poor lady.

C'mon, assistant, need some mop-up here, I only got 2 hands, thank you...

The Punch and Needle Technique

Everyone works a bit differently. This doc has a 2-handed technique. Once the punch is full, she works the tissue around very delicately with a hypodermic. Says it causes less damage to the sample that way. Interesting.

It's ready to go in the vial...

And there it is. We're using SEPARATE vials on this try, so stupid Quest won't THROW ANY AWAY. Again.

More Punches, and the End Result

She keeps going, punching, then working them out.

working away...

This time we only need 3.

I tried so hard to get a clear shot of this, but, sorry, this blurry thing is about the best I could come up with. If you click it close you can see a good 5 separate holes, right next to each other. She was able to go through some of the old holes to minimize the scarring.
They didn't stitch them shut, because that increases the risk of infection. It's better to let them drain freely, instead of giving them a closed environment, which acts as an incubator.
Unfortunately, not stitching means more scars. I try not to care. These are my battle scars, and if I were dead I would not have them.

Nice New Lump, and More Mystery Fungus

I took these a few days ago. Same pic, slightly different views.

These are the things that make people recoil from me in horror if they see it at the store. Not everyone, no. Not at all.

But, enough of them. It's only human. This looks scary and awful, and they don't know what it is or if they'll catch it from me. I don't blame them. That's life.

Out of the various red areas, you can see the scarring from the biopsies at the bottom. The others are just scarring from the infections themselves. The red lumps are infected lymph nodes. They're actually much smaller here than they were before.

Except, that is, for the big huge one at the top. That's new. I shouldn't be getting new infected lymph nodes because I'm taking a lot of antibiotics.

This is what happens when your IgG craters.

Antibiotics don't work much any more.

Here's another thing that happens when your IgG drops: any little thing you'd normally fight off infects you easily. Again, the pic's blurry and hard to see. But toward the top, there's a red mark. If you click it up close, there are actually four, making an arch.

I have no idea how I caught this, except from working in the yard. I asked Dr. C, --Fungal, you think?-- She said, --Looks like it. --Okay, I'll get out the antifungal cream then, thanks.

Friday, May 18, 2007

Still Here

I'm just slow.

Had a very long day yesterday and wore myself out. Slow as a snail today.

But I'm getting there. Don't mean to leave you hanging.

Wednesday, May 16, 2007

You Didn't Think I'd Let You Go To Bed Without It, Didja?

In this shot it looks almost...fluffy. And the buds are on the ends of these odd branch type things. Like little trees, almost, made of some white stuff. If you click close you can see them now that they're pulling away from the central stalk, opening up the sheath-like structures.

And I think I was wrong - it still has a LOT of unopened buds, and it's getting taller still too. It's not nearly done yet.

I like my flowers. No. I love them.

Good thing, too. Because in the very near future I'll be back to posting a bit of gory stuff. Got some interesting health news I've been absorbing.

Just wanted to put you on a squeam alert. Before the fact, this time, because it's gonna get a bit messy.
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Dazed and Confused Is Not

Nope. He's interesting and engaging and just made a REALLY good funny.

Ah, spring is here!

Tuesday, May 15, 2007

Flowering in the Rain

I got out there between showers for today's update shot. The individual little purple flowers seem to be on their last blooms; there are few immature ones left, and the large unopened buds are standing tall and ready to go.

Sometimes a plant will do this waiting for the sunshine, including plants pollinated by wind instead of animal pollinators like bees. Or it'll wait for moonshine, for a night bloomer like cereus. They're waiting for the right pollinator to come along, and hold themselves closed until they sense It's Time.

The sheath structures seem to be opening up now and pulling away from the central stalk. From certain angles it almost looks like the sheaths form a spiral. That's actually not uncommon in plants. And rocks, water, animal bits...

Oh! And, yes. Showers. As in the *rain* kind.

We'll have intermittent rain for the next several days, and I'm immensely relieved. This won't be nearly enough to refill Lake Okeechobee, of course - won't make a dent in the overall drought - but it's all I need for quite a while.

The flower stalk is about one foot tall. That's only the part above the florescent leaves. It doesn't seem that much taller than yesterday, so perhaps it's finally slowed down on its upward growth.

And in OTHER flower news...! heh! One cannot have Too Many Orchids.

Or yellow flowers. Yellow is good. I don't have enough yellow ones. Orchid + yellow = New Acquisition. Less than $8, so hey.

Monday, May 14, 2007

High Noon

Well, maybe a quarter past. But I always wanted to title a post *High Noon.*

The little structures holding the flower buds are pulling away from the main stalk today. Lots more of the little purple flowers are open too.

And it's still getting taller!
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Sunday, May 13, 2007

Happy Mother's Day!

Mom, this one's for you.

I have this amazing flower that's been blooming. It's called Heart of Flame. Watching it through the days is a bit like throwing a party to welcome a Night Blooming Cereus, where everyone stays up until midnight to see the flower open, and all your friends toast it with champagne.

I can't send you flowers the regular way. So instead, here's a Virtual Mother's Day Flower for you. The good news is, you don't have to water it, or hunt up the right size vase, or worry about its thorns (really awful thorns it has). It won't die on you. And it's one of the most unusual flowers that ever lived. Not many moms will get this one for Mother's Day - not in life, or virtually either.

Every single day, it's noticeably bigger and bigger. If you compare it to yesterday's pic, or to each day I posted pix, you can see how incredibly fast it grows. Look how tall it's gotten!

And if you 'd like to see it close up, all you have to do is click the picture. It will burst into bloom on your screen, big and beautiful and full of detail, in all its glory.

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Saturday, May 12, 2007

Heart of Flame, Saturday, Midday

More of the little purple and white flowers are out. If you cliken to embiggen, you can see how the flowers emerge from a sort of sheath-like structure.
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Friday, May 11, 2007

Mid-Morning Update

I don't have a webcam, so I'll just try to post update pix instead.

This flower grows so fast, if you blink you'll miss it.
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Cactus in Florida

My pancake cactus is blooming too. Its first bloom was last week; now it's got another open. See all the buds on this? It's just covered with them.

While I'm admiring the flower, I'm buzzed by an irritated bee. I step respectfully back.

But was it headed for the flower? No. It wanted to hang around licking an unopened bud instead.

Sometimes trying to understand bugs is like trying to understand cats. You best just...give it up, and love them as they are.
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Thursday, May 10, 2007

Oh, My Heart's Afire

I have no idea how a plant produces such a florescent color. I took some other views to show you how it looks in comparison to its near neighbors. It's just as glowing in real life. If you click on the pic, it really jumps out.

This plant is bizarre on the color front in several ways.

First: that glow. It's just amazing.

Second: it's the leaves, not flower petals, that make that color.

Third: The leaves start out green. They change color after the leaves have already grown out. They do this upon some sort of *Orders* from the plant.

Fourth: The plant can go back and forth about the leaves coloring up.

About a year ago, I had this plant growing in a pot out back - one mother and one pup. The mother plant started the color change, meaning it was getting ready to bloom. I got all excited and transplanted it into the ground in Walter's Western Garden, where it lives today.

After I did that?

It decided NOT to bloom after all. It retracted the florescent coloration from the leaves, and they became plain green again.

In other words? It changed its mind.

Perfectly harmless to the plant, it appears. It simply went about its business of living and making some new leaves, and it set off a third pup. Hello, little one!

One year later, here we are with the self-same plant deciding, once again, to bloom.

As you can see, this time it meant it.

The difference in the size of the flower stalk, and the first time appearance of the individual flowers, has taken place in one day. Maybe a day and a half. Look at the difference between the last pic of this flower. It's only one post down, okay?

Mother Nature rawks.