Tuesday, September 07, 2010

Is It Fall Yet?

Labor Day has come and gone and it's now time for some cooler, "Fall" weather, yes?  I'm usually not one to complain about the heat because I know it's the price we pay here in the desert for our fabulous Winters. However, this summer is different because I'm training to walk a half marathon.

When I decided to walk the half marathon to raise money for Cure CMD, I thought it would be no big deal. After all, I'm not running a half marathon, I'm only walking it.  I mean, how hard can it be to WALK 13.1 miles?  Well, when it's 110 degrees and humid outside (what happened to our dry heat anyway?) . . .  it is tough.  I've tried early morning and late evening and regardless of the time of day, it is still hot and miserable.  I'm ready for cooler weather now.

I'm optimistic that I can finish the walk before the sweepers provided the weather in Los Angeles in October is much cooler than it is in Phoenix in August.

Thank you to all my friends who have made a donation to date. I really appreciate it ... and you.

In other news ...

Hilary made it back to Rochester safe and sound and is happily tucked away in her dorm room.  After Mark took her shopping for stuff she needed to get her through the next few months, she promptly told him it was okay for him to leave now.  There becomes a point in time when all parents are good for is their money!

Last week, I had to take Jack to an "intake" appointment so that he could remain eligible for Medicaid.   Because of our state's budget crisis, they moved some kids who receive Medicaid to a different program called Children's Rehabilitative Services or "CRS".  I almost opted out of the whole thing because I think it's BS that we have to see doctors who will not be providing care to Jack (because we have private insurance).  But, I figured it was not wise to lose Medicaid either.  We get to the appointment and they tell me we are seeing a geneticist and the appointment will take at least one hour.  I (somewhat) calmly told them that Jack is seen by one of the top neuromuscular docs in the country at one of the top neuromuscular centers in the country and that I know more about Jack's genetic condition than their geneticist ever will.  I handed them the  three-page history/diagnoses/conditions/medications/list of physicians that I had typed up and told them everything they needed to know could be found on those sheets of paper.  When the geneticist came to the room, I explained why I was there (only because I had to be) and I told her that I didn't have an hour because I had to get to work.  She wrote fast and we were out of there in a half hour.  She mentioned some other genetic testing that would tell us if Jack has any other genetic glitches other than CMD. Seriously, do you think I care?  What difference would it make if he does?  I let her know that Jack is an impossible stick and she wasn't even going to be allowed to try.

The doctor told me she was "very impressed" with how good Jack looks given all his "issues".  She also felt the need to tell me that most marriages don't survive having kids like Jack.  Weird.

I really don't like doctors.  Except for those doctors I really like.

Well, that's all I've got my friends. Thanks for checking in!

9 comments:

worthy said...

Really, you don't need to know if Jack has any other 'issues' it isn't going to make a bit of difference to the excellent care you already give him, so why put him through it? Stupid doctor.

Glad Hilary is back and settled. It gets to the point where parents just aren't cool to be around anymore!

And, the weather? You can have ours, cold wet and grey!! ;)

ssouth said...

Good luck with the walking. I hope it cools off for you soon. It's be-autiful here in MO!
Funny about the marriage thing. I've been told that often too, but our son has never been an issue for us. In fact, I'd say it's brought us closer together, common enemy (not Ben, CMD!) and all that.

I hope you raise lotso money for your marathon!

Rachel said...

Ah, Ann you are so funny! I love your humor. You are wiser than any of those docs (well the ones you don't like) :) I would like to contribute to the Walk. I'll find the link...

The Hogan family said...

Don't you love getting unsolicated advice from someone who just has textbook knowledge of the life you live? It drives me nuts! Like you don't know about the stress a complex child brings to your life? I am with you...after only five years on this journey, there are only a handful of doctors that I care to give more than the time of day to! Good luck with that training...you are a better woman than I!

Alicia said...

Did that doc really think she had anything to add, after you have had Jack all these years? After she has only read his chart? AS IF!! ;-)

Good luck with the half marathon, so great you are doing that.

Anonymous said...

I love your sass with the docs.
Good luck on your walk. We are cool here I had to get the girls extra sweaters, so I hope it cools for you.
Tess

Melisande said...

I love that you are a mother-from-hell!! They have to know you've seen more than your fair share of docs!! :)

Keep on keeping on!

Jason said...

I remember when Ben was still young we were at childrens for the pneumonia of the day. In walked a fellow or maybe a third year and asked us for a history. We told him it was long and complicated, but he gave us his most charming smile, and most doctoral tone said, Don't worry, we'll get this all figured out. In our young naivete we gratefully began reguritation the story. After about an hour, he was disheveled, and wild eyed. Somehow his perfect hair had become touseld, and he was massaging his writing hand. He looked at us and quitely said, "uh.. yea.. well I uh, think I've got enough to get uh.. started..." We never saw him again.
But hey, At least he tried :)

Ann said...

Jason, that is classic. It's been a long time since I've had to regurgitate Jack's history. I decided to type it up this time to conserve time and energy at the appointment. Nothing scares a resident more than a parent who has as much or more medical knowledge than they do. They can't BS their way through with us and they know it!