One Sick Mother

Ten

My darling boy turned ten today.  WTF?  I didn't give him permission to do that! The way I remember the deal, he was supposed to stay little, cute, endearing but very smart for several years. Then he would suddenly be a tall, dark handsome 19yo and leave on a full scholarship to Harvard, having totally bypassed the lanky, awkward and parent-distaining years. That was how I pictured it, anyway. I don;t remember signing up for ten.

He started off well. I remember holding him in the delivery room and just staring at him, utterly fascinated and enamored by this person who had come from my body. I remember him staring back almost as interested, quiet and wise. It felt like there was no-one else in the room. There was some commotion going on as they tried to stop my bleeding, but I really didn't care. We were in a little bubble and to me, Joe was the only person in the room. Himself  came into the bubble a little bit, to visit. But it was our bubble. Himself was a guest.

As we left the delivery room, I looked back and it looked like Freddie Kruger had had a party in there. There was  a sizable pool of blood on the floor and big blood spatters across the wall. I still didn't care.

We lost Joe when he was about 19/20 months old. He lost all his language. He stopped singing. He became guarded and silent, prone to horrible tantrums over the most minor things. We didn't know until a long time later that this was a classic Autistic regression. We had just moved house  and everyone blamed the move. <sigh> we lost a lot of time there.

But the language delay was undeniable. We got a lot of help for him through the system here. First for language, then for other stuff and and he slowly made progress. It took a long time. At 4½, he finally gained functional language. He was mainstreamed last year. Now many people who meet Joe are surprised if they learn he has autism, because he has made such great progress. And he can fake "normal" pretty well a lot of the time.

I used to think Joe was a gift and Autism a curse, but now I cannot distinguish them. I can't imagine Joe as anyone other than who he is, and he is pretty awesome.

Except for being 10 that is. Honest to God! I am too young to have a ten-year old child.

Hands

I have been slowly losing functionality in both hands -particularly the left. The best guess anyone can come up with is that it is Cubital Tunnel Syndrome, which is kind of like Carpal Tunnel Syndrome, except in the elbows, as opposed to the wrists. My fingers on both hands are starting to splay outwards, as the muscles atrophied and tendons have slipped off the bones: First the pinkies, and now the ring fingers. My pinkies turn inwardand get in the way when I try to make a fist or grip anything. However compared to everything else that was going on, it was a minor annoyance, so I kind-of put it on the back burner.

I am supposed to do exercises and PT and all sorts of stuff to retain function in my hands, which I don't often do, because, -let's face it; who thinks to squeeze a ball, when there is so much else one can be doing that one's hands. Like eating popcorn and scratching your arse (with the other hand) while watching TV? Ok I tell a lie there. I never eat popcorn.

I noticed that I was adapting to the situation and not in a good way. I  was starting to leave my pinkies out altogether, tucking them under the wheel when driving, holding them out of the way when using my hands. I no longer use them when typing.

Well as I mentioned before, I have started knitting recently. A lot. I think the knitting action is helping my hands. It is an exercise I will actually do, which is the key to any exercise. I have been noticing some slight  return of function in my right hand, and I am trying to teach myself another style of knitting, which makes more used of the left hand. I think if I can alternate both styles, I may be able to find a way to help my hands.

And of course, while knitting is not considered cool in the circles in which I used to run, I can pretty much guarantee that Joe will be the ONLY kid in the town with a hand-knit Harry Potter-style Scarf in the NY Giants colors. I think that is kind of cool.

Waterlogged

I have not had a chance to post much recently and I apologize. It has been a bit mental here in the past few days.

On Wednesday, I thought the fridge was making a funny noise. I noticed an odd hissing noise a few times as I passed it. Each time I would start to investigate, something would happen; the phone would ring, a kid would need help, the dog might scratch on the door.

Then George The Cat failed to show up for dinner. George loves his food, so I reckoned something was not right. The kids and I started a search: Joe took the upstairs, Grace the main level, and I went down to the basement.

As soon as I opened the door, the heat and steam hit me. And the hissing noise became very loud... Then I noticed the water.  About an inch or more, throughout the entire space...

It turns out that a hot water hose that feeds the washing machine had broken. That was the hissing noise I had thought was coming from the fridge (the basement leak was directly below the fridge). 

I found George on the top of the cat tree, which was an island in the basement lake. He is too vain to get his little paws wet. Not even for food! I eventually got him down, and only one of us got wet (me).

George's little world has been rocked by this event and all that followed.  The basement -his usual escape from kids- has been off-limits,. We have had cleaning crews (two. -long story) in, the plumber, the claims adjuster and  all sorts of activity. 

You know it is so true that all cats are Aspies. Some moreso than others. George doesn't like change one bit. He has been totally out-of sorts the past few days (as has Joe!). Not his usual gregarious self at all. He has even relinquished his self-appointed role as house greeter. I wonder if one of the men accidently trod on him or something? He seems quite wary of men right now -even Himself, who was quite hurt when George refused to come to him when called.

It is sad when trust is broken, even inadvertently. Grace blames the plumber. When Gorge was young a plumber came and freaked him out, and ever since then, she tells people that "George is afraid of plumbers" (Of course, it has never occurred to Grace that he may have been afraid of that particular person, and not plumbers as a group!). She lectured poor Kenny the plumber about this while he was here yesterday. Poor Kenny! He adores animals, so I think his feelings were a bit hurt.

This photo of George was taken by Grace last year. She is quite a good little photographer,  isn't she

Heat.

That was the last movie I saw with my Da in the movie theater: "Heat" with De Niro, Pacino and Val Kilmer. it is still one of my favorite movies, although it always make me sad, because it reminds me of my Da, and twists the knife in the fact that we will never get to watch another movie together.

Still. It could have been worse, I suppose. We could have watched something awful and non-street credible together, like "The Boxer"  (which is on OSM's list of most Godawful movies of all time). But Heat at least has some interest and cred. It has a good cast, too. Well, OK; Kilmer was only ever really good in "The Doors". But back in 1995 but  I still had a bit of hangover lust for him from his role as  Jim Morrison, so I found him watchable then.

But I didn't come here to talk about the movies. You'd be forgiven for thinking that I had, but as usual I am having a hard time getting to the point again.

Yeah It's been fookin hot here in New York for the past week. Humid, melty, opressive, nasty... hot. The warm wet blanket in your face as soon as you walk out the door kind of hot. I never liked it. Never really got used to it, even after living here for (eek!) almost 15 years. But recently the heat has been sinister as well as annoying to me. It definitely flares my symptoms; the tiredness, dizziness and a lot of the neuro symptoms flare with the heat. Indeed, the joint pain in my hands and feet has been flaring too, which was a bit of a surprise, as usually the cold triggers that bugger. Now my hands like neither heat nor cold.  It's a fuckin shame I live in New York, really.  There are many words to describe this place, but "temperate" isn't really one of them.

I used to like that. I still do, I suppose. I was never a "temperate" kind of person (no-one has ever compared me to a summer's day) . But I am willing to compromise on some things, like temperate weather, for the sake of me failing health.  Big of me, what?

Driving The Bus

One of the most relevant questions a doctor ever asked me, -and it was relatively early in this whole process- was this:  "Who do you want to drive this bus? Me or Dr. #6?". By that question, he meant who was in charge of the decisions regarding my seizures and (I guess) health in general.  I chose Dr #6. I chose poorly.

In truth, Dr #6 was never driving the bus. She did all in her power to NOT drive it. Looking back on it all;  I was driving the bus. With one hand and a dodgy leg. In the dark.  With Dr #6 periodically jerking the wheel and steering me into other doctor's driveways

No wonder we have been going around in circles.

Since ditching #6, I have been driving the bus alone, with #25 shouting directions in my ear (and the rheumy, grim and pursed-lipped, a white-knuckled passenger in the back).

In all seriousness though, The "bus driver" question is a very relevant one for anyone with a chronic health condition or indeed for anyone  with a child who has a health condition or a disability.  Theoretically, one's PCP should drive the bus. The PCP, should hold all the threads, do the referrals, collaborate the data coming back, make sense of it, and then make recommendations.  But in this day-and age, most don't do all that. In a complicated case, they can't! They are so underpaid by the insurance companies, the only way to make a living is to see more patients in a shorter period of time. So forget all this management of complicated cases. It is a lot of hassle for absolutely no gain for someone already pressed for time.

So the PCP usually can't drive the bus. The best he might do park the bus somewhere and read the paper.  If nudged by the patient, he may write a referral to a specialist. Which in keeping with this analogy, is like giving the patient a transfer to a crosstown bus (one way).

Therefore I have had to drive my own bus.(and my kids' buses).I don't excel at this by any means. Especially as I deal with a lot of specialists. But I have learned quite a bit and I continue to learn. Maybe soon I get this bus to where we need to be.

In one piece.

No Females Allowed...

I was about to go into Joe's room for my customary goodnight kiss, when I noticed the piece of paper on the door. I am quite impressed with myself that I noticed it, because Joe's door is covered with pieces of paper: Several posters and stickers, some drawings of his and a few of the usual admonitions for little sisters and cats to keep out.

But this was a new piece of paper. A full letter-sized sheet, tape only in the top center, so that it flapped when I opened the door. It was the movement that caught my eye.

I read it:

No female family members or friends

I stood just outside the threshold and poked my head in the door. 
"Joe?  Am I allowed in? It's just there is this note on your door..."
"No Mom. Stay outside. You saw what the note said."
But it can't apply to me. I'm your mother."
Sorry mom, but I'm getting big now. I can put myself to bed."
"So I can't come in at all?  Ever?"
Well, maybe sometimes."
"What if you get sick or something?"
"Well, for something special or important you can come in"
"...but not just to kiss you goodnight"
"No."

He finally relented to come to the door, allowed me to kiss him, and give me a hug goodnight, but he insisted that I was not allowed in.

I wondered how log he had been thinking about this and how to go about it? Joe is not the sort of guy who does stuff like this lightly. He is a thinker. He obviously worded the note carefully. Daddy and his friends are still allowed in. Sisters and mothers are not. (The bugger!)

I'm not sure how I feel about this. I am sorta glad he is striking out for some independence. He will be 10 very soon.  I think this is a good step developmentally.

But let's face it. I am an Irish mammy. And Joe is my only son. Them apron strings are tight!  I don't want to loosen them at all. Not yet! I had plans to do it eventually. I mean, yes: I knew that one day I would be banished from his bedroom. But I expected he would be older when it happened. Like 40-ish and married for the first time. Maybe then I would be ready to let him go. Unlikely, but maybe...

Yeah right! Who am I trying to fool?.

But definitely not yet. And what do I do now? Maybe Joe can sleep fine without a goodnight kiss from his dear old Mom, but what about me? Where is it written in the Mommy Manual that this is OK?

so here I am, still up at 12:43am, discombobulated. 

He could have prepared me a bit better.  That's all I'm saying.  The Son Manual needs to be re-written.

Funny How Things Happen Around Here, Sometimes

I saw the rheumatologist last week. I now see her every three months. It used to be every six. Oh well. I don't mind. I like her a lot.  Unlike many of my other doctors, my rheumy is always ready with ideas and suggestions. A visit to her usually leaves me with some interesting avenues to explore. She is also big on nutritional stuff and natural remedies, which I like.

Well, three months ago, I had been talking to her about the diet and the metabolic stuff and she asked if I had ever supplemented carnitine?  I had not.  Although it is an OTC supplement, available almost anywhere, she cautioned me quite sternly to OK it with my neurologist and any other suitable doctor before trying it -particularly as it comes with it's own special seizure warning.

So I asked #25 about it the next time I saw him.  "No." he told me.  "Not a good idea for you.".  Then his face changed  like he had a thought and he pulled out some old bloodwork results of mine.  "I tested you for this already.... Twice.  ...Oh.   This is interesting. One test was low and the other was normal...  Hmmm..."

So he arranged to have me tested again.

When I called him to tell him I was nixing the Topamax, he shared the carnitine results with me. I was low. Again. So he said "maybe your problem is a very simple metabolic one" To which I replied "I know it is definitely metabolic. I just don't know how simple it may be".

So I started taking Carnitine.  Type and dosages I am not going to discuss on here, because I honestly believe that people should not take most supplements without their own doctor's guidance. It has only been a week or so, but I think the carnitine is helping a little.

But what gets me is the three month path to finding this: A chance mention by the rheumy, then OKed it with #25, and eventually it was confirmed through a test. I know we have to be very careful  with medicating me -even with supplements, but some of this stuff is so hit-and-miss! What if the rheumy had not mentioned it?

I guess I shouldn't go there, because she did, and regardless how circuitous the path we have followed, it seems like we are now headed in the right direction.

Sorta.

Duh!

I have been feeling ...happier in the past few weeks.  Despite the Topamax and all the resulting extra fits, I have been feeling overall happier and chirpier (between fits, obviously). I guess that puts paid to the theory that the fits are linked to depression. Not that I ever thought they were, but I know #25 went there.

Now, I did wonder why I was happier of late?  I thought about it for a bit, and then the answer struck me all of a sudden:

You know those management training courses they send you on when you are in your 20s and 30s and you are on the management fasttrack in a large corporation?  No? Well, some companies, -particular British ones like to send their People on training courses where we do these exercises like catch each other from falling and take loads of tests to find out each other's leadership style or their team-playing abilities.

These courses usually take place in a posh hotel off-site in a small village with a funny name outside of the Big City, (presumably fewer distractions. Ha!). So a bunch of 20 and 30-somethings descend on Stoke Newington or Hastings-on-Hudson, do stupid personality tests all day and then get drunk at night. On the last day there is usually a wrap-up and a Pep Talk from some Management Big Wig, and the hungover and somewhat disheveled Employees put together some sort of half-assed presentation of the stuff they 'learned' for said Management BigwWg with at least one of them wearing someone else's ill-fitting clothes because they lost their hotel room key the previous night and was too drunk to get to the lobby for a new one (and running too late the next morning).

And the only ONE of these courses I had ever really wanted to attend was scrapped before I had a chance to take it  It failed for being too successful. Apparently too many employees were using their newfound tactics learned in the Negotiation Skills course to raise their salaries...

OK to the point: One of the tests they had us do at one of thee courses was the Myers-Briggs test. I can't remember much about it except I was ENTP and the E stands for "extrovert". Extrovert was defined to me as someone who gains energy from being with people as opposed to an Introvert, whose energy is depleted by people.

So the kids have been home from school and I am spending more time with them and with people in general as opposed to spending so much time alone. So I have been happier. I guess the Myers-Briggs was right on that Extrovert thing.

It only took about 16 years for that point to sink home. Duh!   No wonder I never made it to Management.

Two Years...

Exactly two years ago today I had my first ever fit and this whole nightmare began for me.

Jaysis! I didn't think all this time would pass without any real diagnosis. And here I am two years later, no closer to getting a real treatment or (haha) cure now than I was then.

Lessons To Learn In Summer School

I signed both kids up for some summer school classes this year, so they would keep their skills up over the break. This confused Joe, who thinks of summer school as some sort of a consequence for wrongdoing or poor school performance on his part.  From his point of view; Mom praised him to the hilt for performing well in his state tests and for getting a good report card, but then Mom signed him up for summer school anyway.

Mixed signals from Mom.

I have tried as hard and in as many different ways as I can to explain to him that it is not a punishment, a consequence or a result of anything he has done wrong, it is just that he needs to keep his school skills strong and well trained over the summer, like an athlete needs to train in the off-season. I thought I got the message across until last night: Just after he brushed his teeth, he looked at me and said "I will try and learn my lesson from summer school, Mom"
"What lesson?" asked I (with a feeling of encroaching guilt) "You mean your school lessons?"
"No. whatever lesson you are trying to teach me."
"What lesson is that?"
"I don't know. But when I learn it, I will let you know."  (that kid's logic train could derail Einstein's on a cold day)

Then he took his dignified little self, dressed in nothing but jammie bottoms out of the room to put himself to bed, leaving me dumbstruck in the bathroom, holding his dripping toothbrush.

He still thinks he is being punished for some unknown transgression. I know exactly how he feels. I have felt that way for two years. But I don't know how to fix it.

For either of us.