One Sick Mother

A Boring Day!! -Oops! Spoke Too Soon.

Every now and again I chat with the other Autism moms or sick people about how it would be nice to have a totally boring day. I mean a boring day in the sense that most normal people would define one: running around with the family shopping or doing errands, grabbing lunch out, maybe catching a movie or dinner out.  Or in! Just one of those hectic "normal" days that most families just do without thinking it is weird (to some of us).

Most of my friends don't have normal days like that. They are either too sick to run around. Boring for them is genuinely bored. My other friends can try, but they usually  run into some of the less fun parts of Autism at the Mall and the "boring" myth is shattered by meltdowns and unhelpful bystanders.

Yesterday I thought I had a normal boring day.  We pottered around the house in the morning. Then we grabbed lunch, went to the mall for sneakers, jackets and other back-to-school necessities, did some shopping and browsing, ate dinner, came home, watched a movie together and generally had a pretty "normal" day; -which was extrodinary for us. No meltdowns, no fighting, Mom wasn't sick, in pain or seizing and all was relatively well with the Universe.

It lasted until 10pm.

Grace was sitting on the bed getting ready to put on her jammies, and I gently pushed her down so as to "bless" her belly -as one does with young children. Her hip subluxated.  I didn't hear it, but "ow-owed" and told me her bone had popped.

Then she said something that shocked me: "I can get it back in" and she stood up and started to twist herself around.  I was shocked because it had obviously happened before. More than once, and she had never said anything to me. I guess she always got it back in. Well, not last night.

We ended up going to the emergency pediatrician.

They had heard of Ehlers-Danlos Syndrome (they claimed) but had never met anyone with it.  They didn't know what to do with Grace.  The hip was not completely dislocated, and she could move it and bear weight. They were looking at me like she was making it up, but I know better. She told us it "felt wrong" and I backed her up. She does not -CANNOT make up this stuff. A joint can be subluxated and pretty functional -except for the pain and feeling "wrong". You can take that information to the bank.

They were going to take x-rays, but I talked them out of it. I didn't want her exposed to all that radiation.  With a lot of prompting from me, they examined her everywhichway, and finally on one of the last tests- the squat, there was an audible click

She told me later that the click had been her joint going back into place.
"Why didn't you tell the doctors that?"
"Well. I knew YOU would know. Your bones click all the time. I hear them" (oh.)
Yes, but we were not there for me, we were there for you. And me or the doctors can't feel what goes on with your bones. Only you can feel it.  You have to tell them and give them that information. The more they know, the better they can help you.

The I realized something huge. Grace doesn't know that having EDS is not normal. That this stuff does NOT happen to everyone. Grace thinks that the doctors, nurses and everyone should just know this stuff. Because it happens to everyone, right?

Wrong.

I sat her down this morning with the three dimensional human body book we have.

This is what it says about ligaments. (and by happy co-incidence, it used the hip as an example!):
A ligament is a strong band of tissue that holds two bones together without stretching. Since ligaments don't stretch, their position at the front of the hip keeps the hip joint in place and makes sure it doesn't bend too far back when you stand up.

I explained to her that even though that book mentioned TWICE in a short space  that the ligaments don't stretch, that was only true for most people. It is not true for us. She Joe and I have stretchy ligaments. So do my sisters, most of my cousins and most of *her* cousins. It is just how our family is.  But most other people have the non-stretchy kind of ligaments, which is why they can't do silly tricks and their hips don't click.

I think the penny is starting to drop.

I also told her there are some things she can do to help herself, like "hooking" her fingers to push buttons, and not locking knees and elbows. That was enough for today's lesson, but I know I need to do a lot more.

For starters, I need to get MedicAlert bracelets for both of them. As a friend pointed out: I was lucky they docs believed me when I said she had a rare condition as I had volunteered that I had been the one who had caused her injury. Also I was able to prove it was genetic. If Himself had been in the same position, he couldn't prove the genetic link by hooking his leg over his shoulder. He might have been arrested!

The other thing I need to do is get my kids started on self-advocacy. For both the EDS and their developmental issues. That is a more difficult proposition. How do you teach an Aspie kid how and when to respectfully stand up to an adult and tell them they are wrong?

I don't know either. But I am going to try.  Afer all, advocacy is my big thing. If OSM can't teach her kids to self advocate, then she has utterly failed.

The Pirate Ship

I have been loading up with vitamins and have had a couple of good days in a row, so I took a chance yesterday and decided to bring both kids to a small local amusement park. It was the last official day of the summer break, they were both restless and antsy and I figured we all deserved some fun.

Well, we walked into the park and the first thing Grace saw was the pirate ship ride. Joe wanted to go on the water coaster, but oh no... SHE didn't want to get wet. 

He wasn't at all sure about this ride. I offered that I would take Grace and he could sit it out, (Grace, the fearless wee monkey was just too short to ride alone -not that I would let her).  But -competitive wee man that he is; if his skinny little sister was going to go on it, well, he was going to go on it too. (Good choice,IMO because she would never have let him live it down..).  We managed to get Grace to agree that we would go on the water ride next and Joe gallantly stepped up and determined to try it.  Life with two Aspies is never boring...

Of course, we sat on the end,to get the maximum effect.  I sat in the middle, with a kid on either side.

He was OK at first. Then he spotted a teenage girl sitting on the other end of the ride facing us, and she was scared, had her eyes closed, and was screaming "This is high! High! Too HIGH!" while her friends laughed at her expense. (Teenage girls are awful. Glad I never was one.) Well, that was it:

Joe started to scream.

Not the I'm having-so-much-fun-I'll-just-put-my-hands-in-the air kind of scream one does on fairground rides. This was a low, gutteral, animal scream of complete overwhelmation (yes it IS a word. ...Now.), that took my heart, wrapped it around my intestines and deposited it in the place where my left kidney usually resides.  Where my kidney went, I have no idea...

I put my hand on him and tried to calm him as best I could. Thankfully, he was not so panicked that he tried to get off or anything (have had that happen before, too!), and he made it through to the end. He started to calm before the ride was over, and was I think quite relieved that he had not died, and a little embarrassed that the had thought he might.

His poor arms hurt from holding on so tight.

We talked about what had happened in the line for the water ride. "I thought I was going to fall out of the seat". So I explained that the ride was cleverly designed to make you *feel* that way, but that the bar would hold him in.  And I explained that the people who built and ran the ride would not allow kids to fall out.
"Because they would never forgive themselves?" (aww! He is so sweet!)
"No. because it would be bad for business."  (Mom is not!)  And I explained that if kids were killed on rides, no-one would go in them and they company would lose money. I think he understood.

About 90 minutes later, he announced that he wanted to try The Pirate Ship again.

Grace, who is afraid of nothing and has a cast-iron stomach (she had giggled her way through the first ride), was all for it. So we tried again.  The second time, he did not scream and he even laughed a few times.

The third time, he let go and put his hands up (with me holding him)

The FOURTH time, he insisted on going by himself, opposite to me and Grace. This gave me a great opportunity to watch his face while the ride was in progess. He was genuinely smiling and laughing. He put his hands up when he was at the apex, and he gave me the thumbs-up sign when he descended and I rose.

The fifth time, he sat behind me, and talked a kid his own age, who sounded scared, through the whole thing.

He was buzzing the whole way home that he had faced and conquered his fear of the Pirate Ship. -and incidentally, of the bumper cars, on which he had had a bad experience in Hershey Park a couple of years ago.  But he got right into one of those bad boys drove it like a true mental Irishman.

I was so proud of him.

So next time we go there, Grace has insisted that we try the Frisbee, which not only rocks.

 

 It spins...

(I must be completely mental.)

Another Crazy Phone Call

So I get a phone call today and it is from my disability insurance company. A woman I have not spoken to before. She explained that she is NOT calling about my disability claim. She is calling about me life insurance claim.  To which I answered

"What claim?  I'm not dead!"

As I wrote before about insurance companies (although a different one),  I sometimes really think these people are TRYING to give me a heart attack.  I mean,  who calls and tells you there is a life insurance claim out on you?

Well she quickly backpedals and said that it is not a claim against me life insurance, but a claim for me to have life insurance through them. Some residual red tape stuff from my old company. Aparently I am still on the group policy. I had no clue.

So after a quick 23 minute phone call, we got that all cleared up.

But I still remember standing in the kitchen, looking at the basket where we keep kid snacks and thinking -for a split second- that someone had listed me as dead.

It was not a nice feeling.  Not at all.

Up-to-Date is Good.

You know how -when your mind is relaxed, you think of the strangest things?  Well, last week, I was in the bath, and I was thinking about shots. Not the alcohol kind, the injection kind. And not kid shots and the  vaccine controversy and all that other stuff that clogs up an Autism Mom's brain. I was thinking about my own shots and how I am up-to-date on me Tetanus jab. Yay me!  And I patted myself on my sudsy back.

So the other night, I was pulling cat hair out of the drain of the big old sump sink in the laundry room. Now this sink is huge. *I* could fit in it (not that I have ever tried). It is cast iron enamel and original to the house.  For all I know, it was OLD when this house was built. But if we decide it was new then, it is fifty years old at least.

Well, I am leaning into this thing, practically falling in, when I feel a sharp pain in my hand. I look, and I have gotten a huge rusty enamel splinter stuck in my palm. It came from under the rim of the sink somewhere, where I was holding on for balance. Now,  I know I have not cleaned under there in ... ever, and I doubt the previous owners have either. I look at that bad boy and wonder how many years of dirt and bacteria were just pushed right in under my skin?  EWE!!!!

Yes I washed it out very thoroughly with the strongest disinfectant I could find.  But all the time, at the back of my mind, I was thankful that I know my tetanus shot is up-to-date. I just got jabbed again last year. So no worries about the rust.  No need to call the doc to check.

And knowing you are up-to-date is a very good thing. We all get so wrapped up in our kids' stuff that we often neglect ourselves. But accidents don't just happen to kids. And they always happen when you least expect them and are least prepared for them. That is why there are called "accidents".  So it is good to keep the preventative stuff as up-to-date as possible. Even if it is -quite literally, a pain in the ass.

So ask yourself this: When was my last tetanus shot? 

Can you answer that question? 

A "Dislocatey" Week So Far

I dunno why sometimes I seem to stay together so well and other fimes I fall apart very easily.  I am speaking literally here. My bones can stay where they should for months on end and then for some reason, they all suddenly decide to go a-wandering.

I have been very "clicky" recently. Much moreso than usual. Then I woke on Sunday with a slipped disk in my neck. This transmogrified into a collarbone thing.  I spent most of Monday trying to rearrange my collarbone (don't try at home). The last time I remember doing this was during Sr. Canice's class in 4th grade. I used to sit and clunk my collarbone because I got into trouble for all of my other figets.

Sr. Canice was very strict. She died of a brain hemmorhage just a few months into 4th grade, which traumatized us all greatly. She was young to have died so sudden, and although she had been strict, she was a great teacher and we had all loved her.

So yesterday, I was taking a bunch of kids to the pool, and I dislocated two separate bones in my hand on two different occasions just opening and closing doors.  So there I am jumping around the parking lot, clutching my hand, trying NOT to curse like a sailor, and the kids gathered around me.
"what happened?"
"I think she burned herself"
"Are you OK, Mrs A?"
"She burned herself?"
"How can she burn herself? it's not that hot"
"Mom? did you burn yourself?"
"What happened?"
"Mom? Can we go now?" 

That last one was Joe, of course...

You have to see the funny side.

Funny, when I tried to explain to the kids what had happened, Joe was the one who got it immediately. "Oh. That hurts."  So it has happened to him too and he never told me. Or his rheumatologist. <sigh>  What am I going to do with that kid?  We try to get information out of him in a non-suggestive manner, and nothing comes out at all. But he sees the similar situation and he immediately relates. It is frustrating to parent him sometimes, because so much comes out so long after the fact; -much too late to do anything about it.

Many people think that the dislocations that happen with Ehlers-Danlos Syndrome do not hurt.  Let me clarify this for people who have not experienced it:  A lot depends on *how* you dislocate. If it is straight out and back in, it usually doesn't hurt.  So I can sit here and pull my hand straight off my wrist and it will not hurt so long as I put it back right without grinding the bones together. However if I do something else that might dislocate my wrist, like pull open a heavy door or place  big tub of cat litter into the cart at the supermarket, there is usually some lateral forces or twisting involved, and yours truly ends up a cursing pile of mush in the supermarket or outside the door.

Even if is is just a patial dislocation (called a subluxation) and the bone pops right back in again, it can still hurt for hours afterwards. There is usually  some swelling and inflammation for some time afterwards, too. I still remember my Da being bewildered and frustrated by this when I was a child. He believed that I had hurt myself (the only adult who ever believed me), but couldn't explain or help it.

I have been trying to work out why I am suddenly so clicky and dislocatey (I like that word).  I am thinking it is probably a vitamin shortage. I have not been eating at all during the day, so my vitamin intake has become kind of spotty. So I guess i will have to start eating again, which will mean I will start seizing more. Ugh!

Choices like this suck.

And I have still not heard back from Dr. Thyroid, BTW. I am going to call this afternoon.

Am I The Only One Who Sees It?

That Michael Phelps knows he has a Connective Tissue Disorder (CTD) such as Marfan Syndrome and is not publicly admitting to it, that is.  Am I the only person in the universe who has read that passage in his book and interprets it -not as a statement that he doesn't have a CTD, but as a carefully worded failure to admit that he has one?

I really must be the only one. And I wondered about this for a bit. Were my instincts completely off?  Has OSM finally lost her edge?  I didn't think so. And then I thought about it some more and I realized that I am probably unusually qualified to spot this for two big reasons:

1. I have a connective tissue disorder and I know what is involved in the evaluation for and diagnosis of such. In other words: I know what was omitted from the descriptions in the book.
2. Having worked in customer service for years, I am quite an accomplished wordsmith and spinmaster myself. I recognize great spin when I see it, and I have to hand it to Brian Cazeneuve: He is a genius.

OK first the omissions: Say you are a young athlete who is referred to a major medical center by your coach to rule out Marfan Syndrome because not only do you have certain physical characteristics, you have a rapid heartbeat (that's tachycardia in medical parlance) to boot.  What will happen to you?

Well, you will have a lot of tests and examinations, probably by one or more teams of people.

First off, there will be extensive physical examinations. You will be weighed and measured. And when I say "measured", I am not joking.  The team should take a lot of measurements and check them relative to each other. The most publicized one is the height/armspan ratio, which OSM has mentioned here before and then seen her own words cut-and-pasted all over the web (Hello people: Copyright!!!!). But there are other measurements, ratios and tests: There is the upper to lower body ratio, There would probably be measurements of chest and head circumference (depending on your age at the time), as well as possibly of the long bones; femurs, fingers etc.

They would look for certain established signs of Marfan Syndrome, which are called (in a rare case of simplicity in medical terminology) "Marfan signs": Can you reach your elbows back behind you and touch them against each other?  If you wrap your hand around your wrist, does the pinkie overlap the thumb (both hands)? If you make a fist with the thumb inside the fingers, does the tip of the thumb stick out the pinkie side of your hand (and by how much)?

Scoliosis would be checked for as well.

There would also be an assessment of hypermobility, probably based on the Beighton Scale, and you would be scored based on that. A score of 5 or more (out of a possible 9) means clinically hypermobile.

There might be more: examination of mouth, teeth, jaw, and you would be asked to perform any "tricks" of hypermobility that most of us "X-men" have learned as kids and used to gross out other people.

So after all that is done, there is the other presenting factor to address: the tachycardia. (this may actually been tackled first). Any person who has a suspected connective tissue disorder -particularly Marfan Syndrome- will have an echo-cardiogram. This is essentially a sonogram of the heart, where a technician will use a machine to visualize and take pictures of the structures of the heart: the valves, chambers and surrounding large vessels to make sure there are no physical defects therein or thereabouts.

There would probably be other heart tests too: an EKG (the one test Phelps actually mentioned), probably a stress test, which is an EKG while on a treadmill (which he no doubt aced) and possibly a holter monitor test (i.e. 24 hour EKG) and a tilt-table test to rule out POTS, which is a common complication of connective tissue disorders.

You will also have a very thorough examination of your eyes, which he completely fails to mention; -Marfan syndrome effects the eyes in a lot of cases- and the lungs, too.

If anyone is curious, there is a complete Marfan diagnostic checklist here.  Interestingly, the 1.04 armspan/height ratio that Phelps has, although it is below the technical cutoff of 1.05, will not exclude him from a diagnosis if other criteria are met.

So Michael Phelps would have gone through all of this testing.  Now, I am not going to reproduce the relevant paragraphs from his books here and break them down piece by piece, because for all my whining about my own copyright, I am not going to disrespect his. So you will have to go elsewhere to read his words.

But there are some things he said -and more interestingly didn't say,  which I find completely fascinating. Here are some examples (paraphrased)

• He says he just had an EKG test (Hello! see above). But then he mentioned that his aortic route is clear. Well, you can't see that on an EKG. You can only see it on an echo-cardiogram. So he has had more tests for this than he lets on.
• He says everything was and is "okay". He does NOT say "I do not have Marfan Syndrome or anything similar" which is what most people who don't have it would say.  He says the "tissues are strong" (very interesting wording there -means a lot to an EDS-er, that.) and everything is OK.  You gotta love Brian Cazeneuve, because this is really a masterpiece of evasion.
  
• He then goes on to mention that he is tested once per year. OK. That is telling: In my experience, if a condition is ruled out, it is ruled out. You don't go back for regular checkups. My daughter was checked for cardiac complications due to her Ehlers-Danlos Syndrome. Her echo cardiogram was absolutely fine, and so the doctor basically said. "You don't need to come back here ever again. Have a nice life. Bye!"  I doubt any specialist  would follow up regularly  with a patient just for laughs. Most will only follow up if there is good reason. Otherwise they discharge you, and maybe have you follow-up with your regular doctor if there is a small risk.

I also wondered what was the specialty of this "Dr Peter Roe" who is mentioned in Phelps' book?  I searched for him online and I couldn't find him in John's Hopkins or anywhere else. In fact, the only hits I got when Googling him and Marfan syndrome were in relation to Michael Phelps.  Hmmmm. That didn't make sense.  I wondered if his name had been misspelled (by accident, of course)? I found a Dr Peter Rowe at John's Hopkins. Interestingly, one of his special interests is Ehlers-Danlos Syndrome (EDS). 

So maybe Phelps does not have Marfan's after all. Maybe Michael Phelps has Ehlers-Danlos syndrome?  That would explain a lot. It would explain why is heart is OK. EDS does not always impact the heart the way Marfan Syndrome does. Also many people with EDS have physical Marfan signs and characteristics, such as the long arms and fingers -myself included.

So I guess I was wrong when I said Michael Phelps has Marfan Syndrome. I figure he has Ehlers-Danlos Syndrome.  And he has found a creative way to not tell the world about it.

So really, my writing this is a pretty bitchy thing to do. I am sorry, Michael. I really am. My need to be right is more important to me than your need to stay in the closet with this.  And I really do think it will benefit a lot of people if this was made public. My children both have EDS and they need a role model who would enable them to face their future with pride and hope, not fear. -Because hello! The only other EDS-er they know is me, and OSM is hardly the picture of health and vitality...

Michael Phelps; I wish you could overcome your fear (of what?), stand up and be that role model. It would mean so much to so many people. You have no idea...

This piece and all One Sick Mother text is Copyright (c) Paula Rice, 2007, 2008. All rights reserved. Entries may be linked, but not reproduced in any form without prior written permission.

Jumping Through Hoops

I am STILL trying to find doctor #27. I wrote back in April about this search here. Since then I have changed tack, and decided to put the mitochondrial person on hold for now, and seek out another endocrinologist. A thyroid specialist this time because I still think the experience I had while taking thyroid meds is very significant, but no doctor can explain it, or indeed even seems very interested.

A friend of mine have me the name of her endo, who is a thyroid guy.  He is both highly recommended by her and very highly regarded in his professional field. He seems ideal. So I called to make an appointment. Now, my healthcare plan does not require doctor referrals for specialists, so I am used to just calling specialists to make an appointment. The very nice receptionist at Dr Thyroid's office explained that the good doctor pre-screens his patients.  I need a note from my doctor, explaining why he thinks it is a thyroid problem, as well as recent bloodwork. The bloodwork is no problem. I've got bloodwork results for miles. So I explained my situation to her, and she said if I just write a brief explanation with the bloodwork, the doc would review and decide if he should take my case.

OK I do understand that he doesn't want to waste either of our time, but having to make a case in writing seemed a bit OTT to me. And at back of this lurks the confidentiality issue. What if I send him me medical records, and he refuses to take me case? So he is not my doctor, yet he is in possession of a lot of me records. Where does that leave me vis-a-vis confidentiality?  Not that I don't trust the man, and I know some specialists routinely practice this kind of screening (The Chiari Institute immediately comes to mind) But I do wonder about patient protection and confidentiality in these scenarios. HIPAA probably has provisions for this, but what about for people from abroad?  But I digress...

My brief explanation ran to three pages.

In fairness, I did keep the salient points on the first page, with a little table of explanation. Then on page two and three I gave some history and details on what has already been tried and what has been ruled out.

I ended up sending an 18 page fax. That was just for the endo stuff. I had been tempted to include some ER records but I left them out for now. I and bring them when (if) I see him.

So I am waiting for his office to get back to me to let me know if Dr Thyroid will see me or not.

You know it was lucky for me I had a good day yesterday. I was able to sit down and write a coherent three-page document. Last week, I needed to write a three line letter about my car, and it took me
three days to psych myself up to it, and then about 5 attempts to get it (almost) right.  Three lines!  I know motivation plays a (large) part, but I really think my braincells are dying at an accelerated rate. However, that is a whole 'nother post.

Treating With Food Part 576

I am not supposed to "treat myself with food". That means I am not supposed to address my symptoms by changing my diet or eating patterns; not that I should not reward myself with food. But these days most food is more of a punishment than a reward for me, so treating myself with food becomes -by default, a medical term. And I am not supposed to do it. However, as my symptoms seem to be directly related to food and metabolism and no medications have actually helped; what choice do I have?  In order to be marginally functional and not have fits 3-5 times per day, I must treat myself with (or without) food.

I figured out a long time ago that I feel OK in the morning until I eat breakfast. After eating breakfast, I usually feel horrible. So I might skip breakfast. There is a downside to this plan, however: The longer I postpone breakfast, the more horrible I feel when I do eventually eat. (and yes: I have tried every different kind of breakfast you could imagine)

But sometimes postponing breakfast is the only way to get things done. Say if I need to drive anywhere, I will do it before breakfast. Then I will eat after I get home. I know the consequence for this will probably be a worse reaction than if I had eaten on time, but at least I got whatever-it-was done and crossed off the list.

So if breakfast (most meals) is bad the next logical thing is not to eat at all, right?  That doesn't work for me either. if I fast too long, I will suddenly get all the usual symptoms of an aura and will have a fit. I used to think it was due to low blood sugar, but I have tested my blood sugar levels prior to one of these fasting fits and it has been in the 90s, which is normal-high for me. Indeed, many times I have tested my sugar in the morning, found it low, fasted, felt an aura, tested again, and my sugar is higher.

Hmmm... I guess in these scenarios, my body released stored sugar, which somehow triggered the fit. Many, if not all of my fits seem to be  related to blood sugar fluctuations. But simply eating a low glycemic diet does not seem to do the trick. There is something else -something related to protein, groupings, sequence of meals or quantity... Or something. I don't know what. I do know that some well tolerated foods can give me problems for no apparent reason. It appears to be related to what meal /when I ate before the trigger meal, if that makes sense. It makes it much harder to spot any pattens.

One pattern is time of day. Often, I feel better generally and have a less poor reaction to food in the evening and night.

So my latest plan -while not really a plan and probably not sustainable; -is to not eat at all, but to keep blood sugar up and avoid the big glucogen release. Right now sweetened coffee is working, although that is not the healthiest thing, I don't want to mess with a formula which is kinda-sorta working for now, as the kids are home fulltime for the next few weeks. It is not an ideal solution. I dont' eat at all before 5pm and get very grumpy, but I don't know what else to do.

And it is not a cure either, Taking all my vitamins is difficult because I have to take most of them with food. And today I had a big fit after my 6pm meal. It goes to show that a "treatment" -no matter how bizarre- is not a treatment at all when the underlying condition is unknown.

Diagnosed With ADHD As An Adult

I have been asked about this a bit recently. And then someone reminded me that Michael Phelps has ADHD and is actually open about that one (or his mother is, anyway), so I thought maybe it is time to relate my experience in case anyone is going through a similar thing.

Many people think ADHD is a disorder of childhood and that it somehow magically disappears when one reaches adulthood.  Well it doesn't. A leopard can't change its spots and a person with ADHD will have it from birth until death.

What they do develop are coping skills and masking skills.  But sometimes those are not enough.

I figured out years ago that I have ADHD. I figured it out in the way many parents do. There was something "going on" with my son, the preschool psychologist suggested I have him tested for ADHD and I researched it extensively.  I remember reading the descriptions and thinking This does not describe Joe one bit. But it totally describes me! And it did!

People talk about lightbulb moments, and I do remember sitting right here at this desk thinking maybe I wasn't just a horrible, irresponsible student. Maybe there was a reason I couldn't listen and couldn't do homework (because I really, really TRIED but no-one believed me when I said I tried)

But then I got to thinking about getting the diagnosis formalized and I thought why bother?  I had a family, a good career (then), and about anything I ever really wanted (except an XJS), so I didn't.

But then it started getting worse. 

OK, I know now that ADHD cannot "get worse" But I didn't know that then. I also know that stress and other factors can make one's ADHD appear worse. But I didn't know that then either. I just knew that it was 10 steps from the dining table to the fridge and in those ten steps I could not remember what my kids told me they wanted from the kitchen. Joe learned to listen for my steps to falter when I forgot why had gone in there and then he would call "Milk,  Mom" or "Mom!  ketchup!" or whatever it was I had forgotten by step number five.

When your Autistic seven-year-old learns to remind you of stuff, you know something needs to be done.

So I went to a neurologist and said "I think I have ADHD. How do I go about getting evaluated?".  I was referred to a psychologist , who asked a great question: "what does ADHD feel like?" Then he went on to evaluate me with interviews, forms, history and some other stuff. Yes I had it. Moderate-severe ADHD, Inattentive subtype.

I went on Adderall for awhile and I started remembering the ketchup etc without a reminder from Joe. The first time I remembered it, we were both a bit stunned.

When the fits started I was taken off Adderall because it lowers the seizure threshold (although I am pretty sure Adderall was not a culprit in my case).

Now Joe has to remind me about the ketchup again.  And I have cognitive disorder- NOS as a diagnosis by way of explaining how my ADHD got "worse" (some solution, huh?).

And so one might think that I have come full circle and there was no point at all in my being diagnosed with  ADHD at the ripe old age of thirty-(mumble).  Well, there was. Knowing I have ADHD enabled me to do a lot of things. I learned a lot more about myself; how my brain works and how to maximize my strengths and minimize my weaknesses. Knowing I have it allowed me to forgive myself for not being able to do certain things. To stop berating myself for my distractability and some of the other ADHD "gifts". To stop trying to do some things I would just never be good at and instead to concentrate on the stuff I do well.

So in a weird way, learning I had ADHD helped me to focus.

Mad, eh?

Missed Opportunities

(*There is an update to this topic here )

Michael Phelps has Marfan Syndrome.

You would never know it listening to the commentary. They mention it in pieces; that he is 6' 4", and his  "wingspan" (as they call armspan) is 6' 7". That is a ratio of 1.04. (just short of the clinical cutoff of 1.05). They also mention that he is hypermobile; -or as they say; "double-jointed" in knees, shoulders and ankles. Phelps himself mentions Marfan in passing in his book. He says he has "early symptoms" is followed up every year by a specialist and his heart and aorta are fine so far.

I have been seeing connective tissue disorders (CTDs) everywhere I look these days: I was watching the Olympic Games and those segments they did on the Chinese gymnasts and acobats. I bet most of them has a CTD. In fact, most of the olympic gymnasts look suspect to me. Watch how their elbows and knees bend past straight. Most of these athletes probably don't have a clue that their hypermobility could be indicative of a genetic disorder.   Until later, when the pain and the dislocations start to get them.  And even then, most of them will blame competitive gymnastics in their youth for their joint troubles later on. CTDs are still very  unknown and misunderstood.

And it's not only the Olympics:  I was watching the season finale of "So You Think You Can Dance" (love that show) and the "battle of the poppers" really set me thinking. I think many of the dancers of SYTYCD look like they might have a CTD, but a couple of extreme examples are available in those poppers. OMG! Those guys, Robert Muraine and Philip Chbeeb both can do some very unnatural things, including dislocate bits at will.  Watch this and you will see what I mean.  Can you say Ehlers-Danlos or similar?

The sad thing about most people who have a CTD is that they have no clue their flexibility could be a problem. I remember talking to my aunt a few years ago, back when I was first diagnosed and she summed the thinking up pretty nicely: "Oh sure. We were all double jointed -some more than others, but we never thought that was a bad thing. We never thought we had a syndrome. We just thought that if school didn't work out, we could run off and join the circus..."  a full 40% of them died of brain bleeds, but they never thought that was related to their hypermobility. To this day, they don't think these events are related. And maybe it is a coincidence (or four), but to me, that seems unlikely to be true in all cases. Sad, eh?

So you would think, with all the CTD afflicted people getting all this very high-profile coverage, there would be more about CTDs in the news, right?  No, there isn't. I suspect most of these people don't know they might have a CTD. 

Except for Michael Phelps. He knows he has Marfan Syndrome and he has chosen to downplay it. That must be a huge blow for fellow Marfan sufferers out there, who see what Lance Armstrong has done for cancer awareness and see this huge opportunity for awareness and fundraising missed.

Now, Just because a person is a public figure and has a condition, it does not mean they have to be a spokesperson for that condition. It is not Micheal Phleps' job to be the spokesperson for Marfan or for anything else unless he chooses to do so. And I can't say I blame him for his choice not to do so.  He has different priorities right now, -publicly stated as "eat, sleep, swim (...get laid and win lots of gold medals" were not publicly stated, but he is a 23 year-old male Olympic athlete, so I think we can assume they are a given). Not much room for Marfan awareness in his heavy schedule. Or maybe he doesn't want this success to be attributed to Marfan, as opposed to his talent, skill, hard work and dedication. Maybe he has plans to take this on later, after the 2008 Games or after he retires from competition? Who knows?  But I doubt he will ever have such a huge global stage available to him again, and I do feel sad that this opportunity for awareness is being bypassed.

*There is an update to this topic here