One Sick Mother

I Lost A Friend Recently. Part 1

There is a long story here, so bear with me:

My friend -we'll call her Emily- was someone I had known online for years. You know how online, you have a few groups to which you gravitate, and wherein you form bonds with other members? Well, Em was a long-term member of one of my main groups, a bunch of moms with shared experiences who had bonded over the years. We had several mutual friends; were a tightly-knit group. We interacted almost daily on Facebook. I truly considered her a friend. 

Then Emily started to mention not feeling well. She mentioned hospital visits and tests. She was positive and upbeat through it all, but the tests came back with abnormalities. Emily had Myelodysplastic Syndrome (MDS)  a "pre-leukemia" She started chemo. Luckily, she had recently married her long-term partner, a physician and he was able to assist in her care.

Emily bravely documented her life on chemo, the good, the bad, the funny and the ironic. The rest of us rallied around as best we could, in a virtual group. We listened, we encouraged, we distracted, we cared. 

On the third round of chemo, Em took a turn for the worse. She was admitted to the hospital with an abnormal heartbeat. Her doctor husband took over the updates. Em coded and was brought back. But she was going downhill fast;  she was in a coma, ventilated.  She showed signs of improvement, then coded again. Dave (the husband) mentioned that if she coded again they would not revive her. Em wouldnt' want to be kept alive by machines.

The rest of my group were beside ourselves. We frantically tried to think of ways we could help. Could we send something to Em's son? Could we travel to the hospital?  We realized that in our on-line relationship, we had no real information on Em -indeed for most of us. Some of us had each others home or cell numbers. We texted sometimes. There was the odd few who had exchanged addresses and one or two who lived in proximity. But we realized that in a crisis, one of us could fall off the face of the Earth and not be found.

We all grew closer in our vigil for Em.  We checked for updates first thing in the morning and last thing at night. We poured our hearts out to her on her Facebook and Caringbridge pages.  We consoled each other. We were facing the permanent loss -very young- of a member and we had a hard time dealing with it.

Then all hell broke loose.

One of Em's other friends, a member of different group, and a person unknown to us,  started posting  stuff on Em's Facebook page. Pictures that Em has said were hers, had been pulled off the Internet. Em's doctor husband didn't exists. The picture was of a gay porn star, and Em -a medical transcriptionist- was actually operating the account. According to this woman, Em wasn't sick at all, but pulling off some sort of elaborate ruse, looking for attention, sympathy or ...something. All this information was presented in a gleeful, mocking way.

Em's other friends were shocked, crushed ...relieved that maybe our friend wasn't dying- but also very betrayed and confused. Was this true? Would our long-term friend do this to us?

 

Dr Dave was defensive and outraged. OF COURSE THIS WAS REAL! Yes, he had worked his way through medical school by starring in gay porn (who doesn't?), but that didn't make him any less of a husband or doctor.  How dare people accuse his dying wife of faking her illness.

...and it descended.

In the end, "Dave" had a series of massive tantrums and unfriended all of us, and that was that.

I lost a friend

..but not to MDS or complications of Chemotherapy. I lost a friend to Munchausens By Internet. And  that friend lost all of us. 

Em suddenly resurfaced -alive and well-  as "Gina" a few weeks later. When I reached out to Gina, thinking ...well, that a cry for help might merit some help.  That maybe we could forgive and help her find a way back into the support group, the account was finally disabled. 

Actually, I lost two friends to Munchausen's by Internet, because I got into an argument with another group member about Em-related issues during the turmoil and we fell out. Therefore, between the two of them, it was about 18 years of friendship ...gone.

I miss them both. 

I'm going to write more on this, but in the meantime, here is a good article on the subject.

 

My Mother's Clock

 

This clock hung in the hallway of our old house for over 30 years. It’s an 8-day clock. You wind it every week. Each Sunday after Mass, my mother would take the key from the top of the case, wind the clock and re-set it to ticking by swinging the pendulum, if need be. The tick echoed in the hallway of our Edwardian Dublin townhouse. You heard it in the hallway and on the stairs –anywhere outside a closed room; a constant, steady assurance that all was well.

Technically, that clock wasn’t my mother’s at all. It was originally a school clock. My paternal grandfather, an electrician, worked on the modernization of this school, replacing the old wooden wind-up clocks with plastic, modern, electric ones. This clock and several others were destined for the skip, but Grandad rescued three; one for each of his two married children, and one for his own house. So I guess it was my father’s clock, really. But only my mother could set it to telling time. If someone else tried to get it going, it would tick for just a minute or so and then stop.

I was always fascinated by this clock, with its doors and secrets.

I used to beg my mother to allow me to "help" her wind it, to let me swing the pendulum (at bottom of this frame), which -quite literally- made it tick.

My mother died when I was five. And while the clock still hung in its place above the hall table, it was quiet and still. Fitting, I suppose, that the heart of our house no longer beat. Many tried to make it tick for longer than a minute or two, but it refused.  Finally, it was declared “broken”.  But it still stayed in its place, semi-regularly cleaned and polished (by me. Cleaning the hall and stairs was my ‘job’).

My mother’s brother visited us one day, when I was maybe 9 or 10. “That’s a lovely clock. Why are you not using it?” he said. “It’s broken” said I. “Are you sure?” he asked. I wasn’t sure.  Tim spent the day going back-and forth between the conversation in the kitchen and the clock in the hall. “You just need to find the right 'tick'” he told me confidently and confidentially. “Every clock has its own 'tick'. You need to find the one for this clock, learn it, and it will work for you”. So every few minutes, he would take a trip to the hall clock. He would swing the pendulum high, close the wee pendulum door, and go back to his cuppa tea. He would check on the clock a few minutes later, sigh when he found it quiet; the minute hand having moved a faction. He would then try again, this time setting the pendulum to a different swing. He did this over and over again.  I lost interest and went upstairs to my room.

 Some time later, I heard a shout of triumph from the hall. The clock was working! Tim was beaming. “I told you I’d find the right 'tick'! Here. I’ll show you.  I hope I can find it again.” He stopped the clock, then stood me on the antique table and guided my hand to the pendulum. He put his hand over mine and gently moved it and the pendulum to one side, feeling the various internal landmarks of the clock for the right place.  “…right about …here” he said, and told me to let the pendulum go. The clock started to tick. It stopped after a few minutes,but Tim had me try again until we got it. He taught me to listen to the ‘tick’; to know when the rate was correct. It wasn’t hard once I knew what I was listening for; -that old, steady, heartbeat from the days when I had a mother.

After that day, I was the only person in the house who could set the clock to telling time. So it became “my” clock, and the heart of the house beat again. Sometimes, anyway. I wasn’t as consistent with winding it as my mother had been.

After my father died, this clock was the one thing from the house that I wanted to keep. My bestest childhood friend kept it safe for me, and then had it shipped to me in New York one year as a birthday present.

It was one of the best presents I ever received.  

Tim died years later. I have no other memory of him, but I cherish that one I do have, and the lessons I learned –and continue to learn- from him and the clock:

You have to find the right 'tick'. Set it going too fast or too slow, and it will stop. Set it going at just the right speed, and it will go until it  needs winding again. Sometimes you can hear when the tick is wrong, but it is hard to know when it is right. You often (usually) need to try several times before you get it –especially if it’s been a while. But practice makes it easier. And sometimes –rarely- if the clock was wound too tight, you have to unhook the pendulum and let the clock run right down to exhaustion, so you can wind it up -gently this time- and start again.

I realize that these rules are true for me, too, since I became sick. I need to find my own 'tick'. If I over do things, I will shut down. Similarly, if I set off too slow, there is no momentum to continue.

It’s not easy to find one’s own 'tick' under these circumstances. And I suspect –people being infinitely more complex than clocks- the 'tick' is slightly different on any given day. Still. I have a visual reminder to keep trying.

My mother’s clock now hangs in my home, close to the front door.  It still works, but I rarely wind and set it now.

…but I did today.

It took several efforts to find the right tick. I’m out of practice. But find it, I did.

Funny how a ticking clock speaks of hope.

After Irene

I've never liked this house. It is old, squat and faces North. The windows and kitchen are too small and need upgrading. We bought it several years ago, when Joe was a toddler and Grace a bump. We had Grand Plans to extend and upgrade it; make it like a house we had seen and loved, which had happened to be in the wrong town. So rather than purchase the house we loved in the wrong town, we chose the wrong house in the right town. School districts are important, right?  And we both had great jobs, so the idea of buying a fixer-upper with a view to an almost total remodel wasn't an outlandish one. Then.

And of course, Life happened. And Life laughed at our plans. "You want a new kitchen?  Hahahaha ...NO.  Here, have some Autism instead" (and the school district became suddenly Very Important Indeed). "...A basement remodel?  Heh! Why don't I just disable one of your earners instead? Howdoya like them apples?"  

Didn't like the apples much at all, actually.

But the decisions we made back then; to buy a house we could afford on one salary -just in case, and not to get snowed under in debt in order to remodel, were suddenly very sound ones and we were glad of them. Our little house isn't ideal and I may hate the small kitchen with no counter space, little storage and its avocado green sink and stovetop. But the house is sound and everything (mostly) works.

Then last month, a hurricane 600 miles across, dumping lakefuls of water as it went, meandered up the East coast straight towards us.

Funny how a threat like that tends to focus one's thoughts.

Hurricanes have impacted us before, but usually they are far offshore and the edge just clips some towns  several miles away. I have never been right in the path before. It is scary. I was thinking -not of Katrina, which was an impossible scenario here, but of all that footage I have seen of hurricanes and great storms: Shingles and siding ripped off of homes, stop signs uprooted and embedded in bedrooms, humongous trees collapsed on houses.

That last one is the scariest to me. There was a tree in my backyard that wasn't looking too healthy. I had recieved a couple of estimates for removing it earlier in the summer, but Life had intervened again in the form of a car  accident (everyone is fine), and the tree removal money had  gone towards a new car. We had planned to get the tree removed in early September.  So when we heard about Irene, I was kicking myself pretty hard. I figured we'd likely be dealing with a scenario something like this.

 

...only the house and the weather wouldn't be so nice.

Himself and I kind of automatically fell into the preparations for the storm without much discussion at all. I shopped and made sure food, water and Inside Stuff was taken care of. Himself did heavy lifting and Outside Stuff. The kids helped where they could.

The cooking and cleaning jag started for practical reasons. I wanted to use up food and make sure laundy and vaccumming were done before we lost power. Then it became a way to distract myself and pass the time as Irene loomed ever closer. The radio was doing an '80s thing and I was mopping away to Pat Benetar.

...which was a big fat helping of surreal.

Himself was amused. 'Why are you cleaning today? There's no point! If the house falls down, the only person to appreciate it will be the claims adjuster. He will be telling us "what nice clean rubble you have, Mr & Mrs Sickmother. Not like that dirty rubble in Number 3". Black humor has featured large in our relationship, in case you haven't guessed.

Funny how, when you think you might be losing your little house, you realise that you DO actually appreciate it. I think that's another reason why I was cleaning. A sort of "sorry house. I do actually need and appreciate you after all" gesture.

...and then, when as the storm progressed and lives could potentially be at risk, you realise that the house isn't really very important at all. Except in a "keeping people safe" capacity. That part is very important.

There were some conversations With Himself that I never wanted to have and never THOUGHT I would have. The walkthrough of the house, with a frank and detached discussion of the placement of I-beams, possible wind direction and the potential trajectory of the tree through the house was the most surreal. We calmly discussed what we would do when it fell, or if the big window in the living room was smashed in: Who would take responsiblily for which child or pet, what Stuff we would grab and where we would go.  We didn't care about the house or contents. Our singular commitment was to protect every life here; ten in all: two adults, two kids, a dog, three cats, a guinea pig and a fish (Well OK, we didn't have a plan for the fish. But we did for the piggypig!). Everything else was just "stuff". It didn't  matter if it was all lost once the lives were safe. We packed a bag, like they tell you on the telly.

We slept (badly) in a downstairs room that Saturday night, away from the tree and the pictture window, all of us crowded in, including the dog (who was miffed that Joe was sleeping in his spot), with our emergency bag to hand. We had closed all the doors upstairs and quietly said our goodbyes to it -just in case. Joe and I both fell asleep late, tossed and turned, then woke early; while Himself and Grace -both of whom seem to share a 'sound sleeper' gene- seemed to sleep through the whole thing.  Windows rattled. The wind howled. The rain pounded on the roof, walls and windows. Some water sneaked into the basement.

The tree held. 

One branch fell into the empty back yard. I think the fact that it is half-dead worked in its favor. There were very few leaves to catch the wind. Bullet dodged. We were very, very  lucky. At least 44 other people weren't so lucky. Read their stories here, and you will realise how thin the line between life and death can be during a large and heavy  storm.

So after Irene, I have a new appreciation for my house and my family. I have a renewed respect for storms and the power of nature. I gave up my major addiction: Mafia Wars, and have resolved to spend my time more productively. Like cleaning.

...and writing.

 

My Life in Knickers

Now, from the title, you might think that I spend my life in my underwear, parading around for profit. Sadly, I would not profit very much from such a venture at the moment. I gained a huge about of weight in the past few years, so no-one would spend any money to see that. (They might, however pay me to put back on my clothes! There's a thought!).

No, this is about a realization I had when I walked into a room to see two sheets drying on a radiator, only to realize that it was actually two pairs of my knickers (that means "underwear" for you Yanks).  I never thought my knickers would come to the white, granny, volumious version that I once considered the depths of knicker hell (and swore to foreswear). However, I got to thinking how one's underwear choice changes over the years and how  your knickers say a lot about where you are in life. So I mapped my life back in my knickers, as a little exercise in self-understanding.

Growing up in Ireland, spending a lot of time in an orphanage, we used to wear these ugly, cheap, white cotton (or nylon -itchy), high-waisted underwear like this:

Yeah, I know. They went up almost to the armpits of the skinny kids.  

They most common (probably the cheapest) ones were usually  made of a kind of woven cotton fabric with holes in, that looked like they were made from the same stuff they use to make tea bags.

Tea-bag knickers, we used to call them. Because were were imaginative that way. There were vests (that's undershirts to you Yanks) to match, and if you had the full get-up under your school  uniform, you looked like a reject out of the Barry's tea factory.

There was just no good way to wear them, either. The knickers were ridiculously long in the body. If you kept the waistband at your waist, the bum would sag halfway to your knees. You could try rolling the waistband, but that didn't usually work too well under clothes. The vests usually came below your bum and flared at the bottom, so looked awful if left out. If you tried to tuck the vest into the knickers, then you'd have the waistband up under your armpits and lumpy bits where the vest was bunched. You could pull the vest out through the legs for a TOTALLY ridiculous look. (One advantage of living in a large dormitory, we got to experiment with this shit with lots of different sized prepubescent kids with different body types. Trust me. there was no good way to wear it on anyone.)

Sometimes, if we were fancy, we would get knickers made of nylon, in bright colours, with big, bold prints of cartoons, scenery, our favorite pop group. 

Or flowers. 

These were a bit easier to wear, because they weren't as bulky and they stretched. Therefore you could buy a size or two smaller so they fit without having bindy bits. The downside was they were itchy and sweaty. Sitting on a hard plastic school chair all day with that fabric on your arse is a sure recipe for an itchy bum. Yes. That is experience talking.

The Bay City Rollers were a very popular knicker-print subject at one point. If you were really fancy, you might have the matching vest. And if you were really, really fancy, Bay city Roller socks as well!. Bay City Rollers underwear trifectas such as this were rare out in the field, because they involved having a Ma that could manage to get all your Bay City Rollers stuff washed and dried at the same time (in the days of very few automatic washing machines and virtually NO tumble dryers in the home. And this was in Ireland. Where it rains a lot). Because if you had clean Bay City Rollers socks, there is no way you'd wait for the vest and pants to be clean and dry before you wore the socks out.

With Your Bay City Rollers, T-shirt, Of course.

The real problem with this in the convent, was if you allowed your Bay City Roller knickers to enter the Convent Laundry System, (Mrs. Fox eschewed the normal rules of the universe in favor of many of the lesser known and used principles thereof), you weren't guaranteed to get them back (ever). Someone else may get your Bay City roller knickers. This would reult in a screaming rampage throughout the dormitories demanding to know who was in posession of the undies, complete with demand to show what knickers each girl was wearing, and the contents of her drawers (not underwear. Storage facilities -I know where your mind is going! This is a clean discussion.) The fights we used to have over knickers and socks! And with kids starving in Biafra! We didn't know how lucky we were! -That last part is what the nuns used to tell us. Nevermind that the Biafran war ended in 1970. They kept that line well into the 80's; -until the Eithopian famine, in fact. Then it changed to "starving children in Ethiopia". By then, of course we had switched to fighting over makeup, hairbrushes, records, and clothes as opposed to Bay City Rollers knickers.)

As I entered my teenage years, the ratty floral knickers were exchanged for what I thought (at the time) were very fetching little shiny hipster nylon numbers in various colours.  I still have an outline of  one of them on my hip from an Unfortunate Burning Incident when I was about 18. 

 

Then, moving into my 20s I had a twofold problem of weight gain and needing to Dress Nice For Business (i.e. no VPL). I switched to French knickers -which I must 
say, are very comfy, but a bitch to organize under tights (that's pantyhose,  (Americans). Now, I know some people advocate wearing nothing under pantyhose, but I say

A: WHAT IF YOU ARE HIT BY A BUS?

                                B: I couldn't handle the sweatiness.

I'm not sure if it was my best friend's mother or the transvestite with whom I was cohabiting at the time who suggested a thong (/g-string/whatever the kids are calling it these days). Maybe it was both of them, but it was a genius suggestion. No panty line, pretty comfortable (if you bought a decnt brand), didn't bunch under hose. But it didn't keep your bumcheeks warm. Nevermind. That's what pantyhose are for.

As an aside, I have to mention that it is a real pain in the ass to live with a transvestite who is the same dress size as you. He used to buy lovely knickers for "me", which he would then wear himself, making them all stretched out and saggy in the front. he also used to stretch the waistband of my skirts. This is not my former man in this picture, but I found this image in a "70s bri-Nylon" search and couldn't resist using it:

Women's undies are not made to hold junk. Neither are tiny Speedos.

My love-affair with the thong lasted many years. It was perfectly practical, took hardly any space in storage/laundry, and was always popular with my partners (although only one of them actually wore them. 'Nother aside: Whatever about regular knickers, thongs are REALLY not suited for holding junk. That's just ...No). The only time thongs were impractical was when I was pregnant.

I rolled along happily for years, comfortable in my underwear track, seeing no need to change. All was well in my knickers.

And then I had my first seizure and ambulance ride and I realised that uless you have a perfect ass AND are a total exhibistionist, a thong is a REALLY bad combination with a backless hospital gown.  This was confirmed during my first hospitalization, and I realized; -because you can never quite control when someone will call 911 on your seizing self- that I would have to change my entire knicker wardrobe.

 

This was not an easy decision for me.

Eventually, I settled for boyshorts. Practical, cotton, provided full ass coverge, available in a range of colours, but still cute (and holy shit! Is that photo shopped to within an inch of its life, or what?).

I would have been all over these stripy ones had I known about them at the time, let me tell you. They don't look like they will get all baggy in the leg, which is a big disadvantage of boyshorts. Or that the waistband would cut in and create a muffintop -another regular boyshort disadvantage. Neither do they look like they would ride up your asscrack, which many of the "boyshorts" which are really thinly disguised hipster panties) will do in a single stride.

You have to think of these things, you know. Especially if you might be spending any time in a backless hospital gown.

So boyshorts, yes. I invested heavily in those for awhile. All was well until relatively recently, when all the dicking around with my diet in an attempt to remain seizure free, plastered an extra 60lbs onto my already-short and struggling frame.

They don't MAKE boyshorts in size huge! Waaah! (and they probably shouldn't).

So back to the knicker drawingboard for me. This time around, I was shopping in the "larger lady" section of the department store, and OMFG, there are so few choices for the fat woman who wants no panty line, no nylon and full coverage.  Most of the knickers in this section of the store looked a bit like this.

..only not as nice.

The alternative was to go to the specialist fatlady store and peruse (heh. Originally wrote that as "preuse" -ugh!) their selection, many of which included affirming messages, like "Sexy" "One of a Kind" or "I'm a damn sight more woman than you're ever be, more than you'll ever get and WAY more than you deserve" written across the arse.

But most of the viable options looked a bit more like this:

  

...and I feel like I have come full circle  

 I bet my Da would have thought this hilarious.

 

My Ganglion Cyst Story

It started with a cat.

I bet you weren't expecting that, were you?  But as far as we can figure, looking back and piecing together events to injuries: a big, mean cat named Whiskers may have started the whole series of events in motion, simply by being a cat.  And living in the wrong home.

Whiskers wasn't a bad cat. And he probably wasn't mean at all, because cats don't know concepts like "mean", " bad" or "fair". Cats know things like "food", "sex" and "territory".  And other cats.  And Whiskers was a big cat, white with black and gray patches; an un-neutered male cooped up in a little apartment halfway up a high-rise building in a very, very bad part of town. In that apartment also lived my aunt and her four small kids. Sometimes her husband showed up too, but is was mostly her and the four kids. And very often: me. Me in my teenaged & alienated-hating-everyone years used to visit her quite often, and she was good enough to house my sullen and disagreeable self in her already cramped place.

Whiskers wasn't built to be an apartment cat. He  was big, restless and very smart. He would have been ideal in a farm or somewhere where he could roam free and kill small things (and bigger things!). Although I imagine the farmer would have been be quite confused at his ability to use the toilet  (but maybe Whiskers would have forgotten that skill on a farm).  Whiskers would have thrived in the countryside. Instead, he was stuck in the wrong place;  a great hunter with no grounds and no prey; surrounded by squealing children with grabby hands. He seemed to spend his waking house oscillating between boredom and torment. 

Things continued in this vein for some time until I befriended the girl in the apartment next door to my aunt's.  Not that Whiskers had any problem with Jenny at all. He had a problem with Jenny's un-neutered (and considerably smaller) male Tom cat named Tiger. Whiskers and Tiger had lived in relative ignorance of each other's existance until I started spending a lot of time in Jenny's place. I guess Whiskers got a whiff of Tiger from me, and decided it was War.

He started trying to sneak into Jenny's apartment at any opportunity he could get.  Unfortunately, teenage girls are not great at following directions like "close the door"; and as we were in and out of each others' flats very frequently, opportunities presented themselves relatively often. Whiskers outweighed little Tiger by about 40%, so no-one -including Tiger- had any doubt how a match-up between them would end. Whenever Whiskers managed to get into Jenny's apartment I had to get him out as quickly as possible, because Jenny and her mother both turned into blubbering masses of panic whenever they found him stalking down the hallway of their apartment.

So Whiskers didn't like me very much. Especially when I tried to deter hm from his Tigerhunting missions. Once he wrapped whimself around my entire head, sinking in twenty claws and several teeth. Amazingly, he missed my face, but I was picking blood out of my hair for ages afterwards. And the One Time... The time that we finally learned to close the door: Whiskers opened his big mouth as wide as it would go and clamped down hard on my left hand.  And wouldn't let go. I had at least 5 puncture wounds on my hand, front and back, including one right below my thumb, just before hand meets wrist.

Ouch.

My hand swelled up like one of those surgical gloves when you blow it up. I had to explain many times in the ER: "No. It wasn't a dog, it was a cat.  ...Yes I know that looks too big to be a cat bite, but it was definitely a cat. I was right there and I know the difference.  ...I know the cat! His name is Whiskers..."  That usually convinced them because no-one in their right mind would name a dog "Whiskers".  Not that it suited the cat, either, but nevermindaboutthatnow. There were young children involved in his naming, and he had been much cuter as a foofy little kitten....

I was given several shots and the wound was cared for on an outpatient basis and my hand seemed to heal quite well. I still had several small scars (and still do) but there seemed to have been no real damage done (luckily) and I more or less forgot about the incident, which happened sometime in the early 80s; -in case you are curious about the timeline here.

Sometime in the late 80's I started noticing that my left hand hurt when I moved it a certain way, particularly if I extended it and put any load on it, like pushing open a door, or leaning on my hands on a table. I also noticed that if I flexed my wrist forward, this odd bump would appear, right in the place that hurt while doing those tasks I just mentioned.  I didn't think much of it. I just started using my right hand to push open doors.

It got worse.

By the early 90s it was bothering me most all the time, so I asked my then doctor (#1!) about it. Oh he said, that's a ganglion cyst. they are harmless. Smash it with a book and it will go away".

So I read up a bit about it, and sure enough the old-time remedy for a ganglion cyst was to hit it with the family bible or other heavy book. We chose the New Doubleday Cookbook as the heaviest book in the house at that time. I held my wrist extended over the kitchen counter, cyst bobbled out as much as it would go, while Himself thwacked my wrist with the book.

He didn't hit hard enough the first time. The second time, the cyst seemed to break, although, with the additional trauma from being thumped twice with the book, there was no relief to be had at all.  In fact, my wrist it hurt like a bastard for days afterwards.

After the bruising faded, It did seemed to get a bit better for awhile.

Except it came back a few years later. We were now in the mid-90s and I had changed doctors. My new doctor (#2, who is still my primary doctor) emphatically did not recommend a repeat episode of the book-smashing exercise. He suggested I see a surgeon. Then I got pregnant with Joe and everything was put on hold for awhile.

When Joe was about six months old I almost dropped him. I realized (too late) that my cysty wrist had weakened to the point where it couldn't support its share of a 20lb baby. Luckily I was standing near the couch at the time, so Joe fell down onto the seat cushion in a semi-controlled manner. It dawned on me  then that this wrist situation was getting no better and Joe was certainly not getting any lighter. So I decided to have a surgical evaluation.  It was late 1998.

I can't remember how the subject arose with my ob-gyn, but as he had recommended a good pediatrician, I guess I asked him to recommend a good surgeon.  He suggested a prominent hand surgeon, one who had operated on his own hand (not sure what for), and I went along to be evaluated.

They did a series of evaluation in the hand surgeon's office, which I have not seen before or since (and I have seen a different hand surgeon since) They tested my range of motion relative to my other hand, and my grip strength among other things. They recommended surgery.

The surgery was done on an outpatient basis in the hospital and went very well. The surgeon explained that my cyst had been like an iceberg. Only a tiny portion was visible when I extended my wrist. The rest of it was many lobed and had insinuated itself throughout the bones of my wrist, slowly forcing them apart. He said that had I done nothing, I would have eventually lost use of that hand.

He said that I also had a torn ligament in that wrist, and he thought the ligament had been the source of the problem. I asked him how I could have torn a ligament in my wrist? He shrugged. I asked him to point to the place where the ligament was torn. He pointed. It was right where one of Whisker's teeth had penetrated all those years earlier. There was (is) still a little scar there.

(Oh.)

I asked if he thought a cat bite many years earlier could have been the problem? He shrugged again. "It could have been. These things can grow very slowly. Although hitting it with that book certainly didn't help matters. I think that made it spread more."

(Oh.) (again.)

It took awhile for my hand to recover after the surgery. I had quite a lot of pain and I lost a lot of range of motion. I was recommended a very excellent hand physical therapist, who helped to recover post-surgery. It has now been 11 years since the cyst was removed and I have never had a lick of trouble with it since.

Of course, now I just said that and something will happen...

I told this story because I get a lot of hits from people looking for non-surgical solutions for ganglion cysts. I get a lot of hits for known scam ganglion "treatments". I hope some of the people who are looking for these treatments will find this story and know two things:

1. Most of the "treatment" products out there are scams. See below for a list of the ganglion cyst scams that I have previously outed here on OSM.
2. Surgery works. I know it isn't an option for everyone, but I do urge anyone with a painful ganglion cyst not to listen to quacks that say there is no treatment or to hit it with a book (don't!). Instead, seek evaulation by a good surgeon. There are more treatment options than ever available these days. The only regret I have surrounding my surgery is that I didn't have it sooner. I walked around with a painful problem for almost ten years until it became virtually untenable.   

Here is the list of scam products I have found for "Ganglion", The product name is linked back to their site. If you click on the company name,  you will be linked back to my article on the particular company selling that product and why it is bad. Please be aware that most of these companies advertise directly on WebMD and other legitimate medical sites. This does not make their products  legitimate. Contrary to what WebMD would like you to believe, they do not verify all of their advertisers, due to a loophole in their advertising policy. 

Ganglitab by Oslo Health Solutions (OHS)  -more on OHS, detailing the kind of garbage they put in some of their preparations here  and a little more info on them and the psychology of scamming here.

Anglitin by Berlin Homeo Products

Anglatax by Botanical Sources

Glenteton by Gordon's Herbal Research Center

Glanofax by Healing Plants Ltd

Ganglical by Solutions By Nature

Please don't buy any of the above products. They are all scams. None of them are based in the country they claim to be based. All of the addresses are mail forwarding services. If you receive any pills, they will arrive from Pakistan. I have received tons of feedback from readers who tell me this is so.

The other type of scam site is more sneaky.  These are the so-called "philanthropic" sites, the ones which want to "help" you find the "correct" cure for your "problem". These sites will list between two or four herbal treatments (all of which you will find listed above) in varying order, and will make an "independent recommendation" of which one they think is best.  Of course, the catch is that the "independent" evaluator actually owns all of the bogus cures in the first place, so they don't care which one you choose, as long as you choose one. They get the money regardless.

(And they think we are the ones who are sick?)

Here is a list of the scam evaluators, along with the link to my background info on them. 

ganglion-options.com run by The Society for the Promotion of Alternative Health (SPAH)

ganglionhelp.org run by Towards Natural Health.  A little more on them here.

If you have a ganglion cyst and are looking for a real solution: I politely suggest that you get off the Internet, pick up the phone and call your doctor.  

Only An Aspie... ;)

Joe returned home late yesterday, having stayed on at school for the Games club (he did warn me in advance that he was planning to do this).

Me: "So Joe, how was the games club?"

Joe: "I didn't go to the games club. It was too crowded. I went to Mathletes instead"

Me: (who would rather stick a fork in her eye than volunteer for Math): "So how was Mathletes?"

Joe: "It was fine."

Me: "Are you going to do it again next week?"

Joe: "Sure!"

His Grandad would be so proud...

Lessons Learned in Washington

The kids and I took a vacation to Washington, DC last week.  Himself had to work, so it was just the three of us. I was apprehensive about taking a long trip with no adult backup, but they are both getting bigger now, and I have been feeling a little better, so I took a chance.

We Amktraked there; walked, Metroed and taxied around DC itself and made a few attempts to ride a double decker tour bus, with varying success.

Overall, we had a good time: only three meltdowns for the whole trip (one for each of us!) and no major incidents.  But of course, there were some lessons learned: A few little pointers or reminders that I will remember for the next trip:

1. When travelling with two Aspies and only an analog watch, one becomes quite adept at telling the exact time by analog. A German tourist looked surprised when he asked me the time, and I looked at me little Seiko and replied "4:42 ...almost 4:43".
2. If we are going somewhere, Grace asks the time roughly every seven minutes
3. ...unless she is nervous.  Then she asks pretty consistently every four minutes
4. Lesson: Make sure both kids are wearing synched digital watches next trip
5. When touristing in DC, I completely underestimated the advantage growing up in Dublin gave me for using the double decker bus. My kids could NOT handle the navigation and movement, especially going up and down stairs while the bus was in motion, whereas I was the lady with the cane hopping around that thing like I was born on it, catching stumbling children as I went. 
6. Because we saw about four or five homeless people during the entire week, Grace now tells everyone, in an outraged tone: "DC is full of HOBOs!".
7. Considering DC is the seat of our government, I think this is hilarious
8. The ticket booth in the metro does not sell tickets.  You need to use a machine to buy the tickets.
9. You also need to ask a kindly stranger to tell you how to use said ticket machine. Even if you have twenty years experience in the computer industry.
10. Fortunately,  there are a lot of kindly strangers in DC.
11. I had a good look at the casts of Abe Lincoln's hands. Although he was 6'4", and Marfan Syndrome is speculated for him, His hand's didn't look particularly Marfanesque to me.
12.  Seeing Night at the Museum, Battle of the Smithsonian AT the Smithsonian, in IMAX, was pretty cool.
13. Joe's bladder is the approximate size of a peanut 
14. Joe, in an apparent attempt to control or compensate for his peanut bladder, kept trying to hold it and wait for the last minute, which usually resulted in his HAVING to go at the worst possible time, like when were were finally near the front of the line, or the car/bus/train had just pulled off...
15. Sharing a hotel room with your two kids is a strange kind of lonely
16. When travelling alone with kids, Wet Ones are a requirement. Period.
17. Good french fries can cure a variety of ills, from motion sickness to the blues.
18. A child who had taken great care of a palate expander for months WILL accidentally throw it in the trash at the Natural History Museum
19. ...and only remember four hours later
20. The Natural History Museum generates a lot of trash in four hours (and no, we didn't get the expander back)
21. It is impossible to ground one kid and not the other when you are all in vacation and living in one room.
22. Joe is a slow walker
23. ....unless you give him a wheelie suitcase to pull, then he takes off like he has a rocket strapped to his bum (heavy work, maybe?).

Some notable quotes from the trip:

"You are acting more like a Camp counselor than a Mom"

On the way OUT of the Abe Lincoln exhibit, after seeing ALL the exhibits and the pictures of the conspiracy and after hearing the story of the assination TWICE on the tour bus:

 "Abe Lincoln was shot?  I didn't know he was shot!      ...who shot him?" (sigh)

"No we don't want to see the Star Spangled Banner. We heard the story already"

"Hey look! It's the Ruby Slippers from "Night at the Museum""

"So it went to the moon. Big deal!"

This trip was also a little experiment for me, to see how long I lasted without the computer and Internet. I deliberately did NOT take a laptop with me. This is the longest I have gone without a computer in 19 or 20 years.

I did great until Thursday morning, when there was a flurry of texts on my phone, and I realized someone in Ireland was trying to get hold of me (we go it sorted without a computer).

Other than that little start, I found the break refreshing.  I was getting a bit too immersed in the virtual worlds, and not spending enough time in the real world. Although I do fully intend to keep blogging, I have definitely cut down my computer time since returning.

Two Surprises

My Inbox contained two surprises today:

One was from a man who actually obtained a refund from Gordon's Herbal Research Center!  Hurray!  This is the first time I have heard of someone receiving a refund from ...well, any of the scammers I have listed, actually.

The second e-mail was from an outraged lady who thought I had e-mailed her about a scam (I think it was the Gordon's one again).  I had never heard of her, and I never e-mail people links to my stuff unless they contact me first and ask questions. This makes me wonder if someone is spoofing my e-mail address?

I checked my recent hits and there are an unusual number of hits to the Gordon's piece through Windows Live.  A Microsoft bug, perhaps?

Now, that so wouldn't be a first.  Or a surprise.

Why I Care

As most people who have read this site for more than three seconds will know, I have directed a lot of my time and energy to tracking down and outing scammers.  My ultimate goal is to shut these guys down, which is proving a lot more difficult than it should.

Why is it so hard?

Multiple reasons. For one, the Internet isn't a place. So who has jurisdiction on the Internet?

No-one.

Different countries have jurisdiction over their own "bit" of the Internet (and their own rules regarding it). There is some international co-operation regarding Internet use for very serious stuff, such as child pornography rings or human / human organ trafficking.  However, something as relatively "minor" as healthcare scams is way down the list of priorities for these guys.

So we look at the local enforcers.  Let's imagine a hypothetical situation:

Say you live in New Jersey and buy a product from a company that claims to be based in Norway. The product never arrives or doesn't work. Who do you contact?  The company. If they don't respond, to whom do you then turn? The FDA?  They won't get you your money back and they don't regulate supplements. Also, the company was based in Norway, right?  So the FDA will probably tell you to contact whoever in Norway regulates these guys.

Buy you don't happen speak or write Norwegian.

Nonetheless, you persevere and contact the Norwegian peeps, who do have English speakers on hand. They do a pretty rudimentary investigation on your missing $90, which is small potatoes to them, tell you that no such company as Oslo Health Solutions is registered in Norway, regardless what the internet says. But a search they did on the domain registration points to a US Domain site. You need to contact the US authorities.

You contact the US authorities with the domain information you got from the Norwegian folks. The US people check and they say the the US domain registration is a holding site, masking the real domain (many registration sites will offer this service). However, because the company who scammed you is based in Norway (or maybe Pakistan, from whence the dodgy product arrived), but not in the US, they have no grounds on which to investigate the real domain information. You need to go back to the Norwegians.

So you contact the Norwegians (again) and they insist that the domain company is a US one, and they have no jurisdiction. You need to contact the US authorities.

And so you are stuck.  You just went in a great big circle to end up precisely nowhere. For someone with a chronic health condition, this is probably familiar territory after dealing with the medical world.  But "familiar" does not mean "good".

So to whom do you turn?  Your credit card company. They are global too, and they will fight to get you back your money.

And so you eventually get back your money and you go on your way. 

However, no complaint has been registered that stuck, so the scammers are free to defraud indefinitely. 

But OSM. I hear you say  The imaginary person got their money back. So why do you care about all of this?

I care because the primary issue here isn't about the money. It's about the exploitation and mistreatment of sick people.

I care because people have their hopes raised (and you know how I feel about hope) and then dashed by callous predatory subhumans.

I care because if I don't care, and don't try to do something, it won't stop. More and more people will have their hopes raised and dashed.

I care because someone is profiting from their pain and desperation.

I care because the longer I do this, the less these medical conditions are lists of unpronounceable words, and the more they are associated with real people with real lives and families. Like:

• My friend, whose son has Muscular Dystrophy
• My stepmother, who has Rheumatoid Arthritis
• Stephen Deal, who also has MD
• Elizabeth, who has MSA
• Blake, who has SMA
• Janice who suffers very badly with Syringomyelia
• My friend Betsy who had Pseudotumor Cerebri
• The woman from whom we bought this house, who had Parkinson's Disease
• My friend's ex, who had Bell's Palsy
• Another friend's child, who was born with severe Cerebral Palsy and requires 24/7 care
• Another friend who has alopcea, which has impacted his self-esteem for years
• My great-aunt Nora, who went blind from Glaucoma

...and then all the people who have contacted me because they were scammed or almost scammed:

• A lady  in England with painful ganglion
• A man whose girlfriend has been blinded by Retinitis Pigmentosa
• A woman in Australia who has Melasma
• A man in Europe whose girlfriend has narcolepsy, and who has bad side effects from the conventional drugs used to treat it
• A man with Myasthenia Gravis in the States
• a very nice person -not sure wherefrom, who e-mailed me to ask me if I had any information on Scleroderma treatment, as the one product which had seemed to show promise had been outed as a scam by me.

There are many, many more.

So to me now, when I see these scams operating, I don't see words on a screen. I see my stepmother's hands, Or Elizabeth's vivid imagery. I see my friend pushing her son in a wheelchair, turning away from the Memorial Day parade because she cannot look at so many able-bodied kids parading down the main drag, while hers is the only one in town in a wheelchair.

I see evil, money-grubbing, bastards preying on and playing with my friends.

Behind these long disease names and behind every one of the links, there are real people with real challenges, who have to face each day and carry on. I care about that. I care about them, which is why I won't rest until the scammers are shut down,

The really sad thing is this: 

I seem to be the only one who cares this much.

Those Little Things We Say....

My sister had five children in as many years. So for several years,  her house was like some kind of cross between a daycare, a zoo, and an asylum. For most of these years, I lived in a different country so my main communication with her was over the phone.

So there we would be on the phone, chatting normally, when suddenly I would be deafened as my sis would break up a fight or something. Here is an example of what our phone conversations were like for several years.

Sis "...well, there he was, standing all alone, so I wen... GET OFF HIS HEAD!!!  YOU'LL HURT HIM(?)  GET OFF HIS HEAD NOW!!!  ...t over to him and sai...  LET GO OF HIS TAIL!!! NOW! HE'LL BITE YOU!!!  LET GO!!  RIGHT NOW!!! ...d "are you lost, luvvy?  Do you need me to help you find your mum?"

Yes. I was lost. And somewhat deaf in one ear.

I thought, after listening to my sis for years, that I was somewhat prepared for the kinds of things you say when you have kids. I also made sure I had a cordless phone and many handsets, which definitely cuts down on the yelling aspect (In fairness: my sis didn't actually yell that much normally, but while on the phone back then, she was tied to one location).

Today, as I found myself calmly telling Grace "don't suck the cat's blood" I realized that yes, there are definitely some phrases that pop out of my mouth; some combinations of words that I NEVER thought I would say in that order, and it makes me shake my head. Or smile. Usually both.  And sometimes the things I say make me wonder if I have been transported into some kind of bizarro world, or am somehow the star of my very own "Truman show"?  The "cat's blood" thing was totally innocuous, BTW. They were playing a vampire game, and poor George had been designated a 'victim'.

Now, I had expected some strange expressions to come out of my mouth. Here are a few I had expected (and got):

• We don't bring worms/ bugs/ snails/ dead birds into the house"
• We don't run out into traffic
• We don't threaten to kill our sister/brother.
• We don't pick the neighbour's flowers, not even as a gift for Mom.
• We don't go visiting the neighbours without permission (Grace)
• No. You may not drive the car
• See! I TOLD you Teddy can't go in the bath!
• This is what happens when you don't put your gum in the trash!

...and then some things I NEVER thought I would ever hear myself say; especially not in the calm, matter-of-fact voice I perfected about a year or so after Joe's special needs became apparent.

• We don't growl at friends/ strangers/ anybody
• We don't attack other kid's moms (/dads) in the zoo  ...Or anywhere, for that matter.
• We keep our clothes and shoes on in the restaurant, please
• We don't sniff the pizza delivery guy
• We don't tunnel behind the boxes on the supermarket shelf  (I distinctly remember wondering where Joe was, and then when looking down the aisle, I watched a progression of cereal boxes fall off the shelf, one after another, away from me, allowing me to track his progress down the back of the shelf. He was pretty fast! There was a long line of boxes by the time I got to him.)
• Do you always pick on disabled four-year olds? Or have you waited your whole life to meet your intellectual equal? (this to a man in K-mart, who was being mean to Joe.  ...and that one wasn't said in a calm voice!)
• Please don't sniff the food you are given in Kyle's house. His mom's feeling might be hurt.
• What show is that from? (this in response to a clearly echolalic utterance) 
• You need to tell people who you are when you call them on the regular phone. it's not like Skype.  They can't see you.
• No sweetheart. Zombies won't get into the house while we are sleeping. The alarm is set.
• I know the guy was fat, but you can't say that to his face.  You have to use other words, like 'big" ... better yet: Don't mention it at all...

...and there are a few non-parenting-related  phrases I never thought I would hear myself utter, either.

• "Don't call 911. It's only been 40 minutes" (since the seizure began) Don't try that one at home, kids.
• "I think we can get it back in. Just pull my arm straight out -don't twist, whatever you do.  On my count..."

I'm sure there are many more, but I can hear the kids start to get wild in the background, and I suspect I will have to go and use some of my phrases in a minute.

What about you?  Are there any particular phrases you never thought you would use that stand out in your mind?