We also enjoyed quite a bit of dress up, as you can see. Yes, that is a tiara Tracy is wearing in the first photo. Later India modeled her very creative "Ariel" look, replete with a red scarf for hair and a mermaid's tail hanging out of her p.j.s. I know, the p.j.s are both Valentine's and Christmas; what can I say, at least they match...sort of.
Monday, September 08, 2008
We also enjoyed quite a bit of dress up, as you can see. Yes, that is a tiara Tracy is wearing in the first photo. Later India modeled her very creative "Ariel" look, replete with a red scarf for hair and a mermaid's tail hanging out of her p.j.s. I know, the p.j.s are both Valentine's and Christmas; what can I say, at least they match...sort of.
Posted by The Turmanators at 4:41 PM 13 comments
Friday, September 05, 2008
Once we had recovered from our boating (mis)adventures, it was off to school for the Short People. India's first day of first grade was on Tuesday, and she ran to the car at pickup time yelling "First grade is AWESOME!!!". Let's hope they work on her vocabulary a bit, but we're thrilled that she is so happy. Kate's first day of pre-K was Thursday, and she was a little "nuwvus" but seemed to enjoy herself.
Each Short Person selected their own "first day" outfits but were not allowed to accessorize. We are experiencing an accessory ban here, mostly because they broke 5 bracelets in 4 days last week. Evidently some of this happened because they were playing "pets" and using stretchy beaded bracelets as "collars". They would tie a scarf "leash" to the "collar" and pull each other along, calling each other names like "Clarabelle" and "Fluffy". Yes, school couldn't come back around soon enough around here...we clearly ran out of fun things to do and were really reaching down into the depths of our imaginations. This leash and collar design looked waaaayy too S & M and also resulted in a multitude of brightly colored and very tiny beads scattered everywhere; the vaccum and I are still finding them. The accessory ban is for the best; if I let them they would arrive at school looking like Evana Trump.
Now we are battening down the hatches for the big storm. School was on a two hour delay this morning thanks to the weather; sometimes fog rolls in from across the bay before a big storm and this is what our yard looked like at 7:00. Time to go fill up the tub, pull out the batteries and charge the cell phones. Wish us luck!
Posted by The Turmanators at 5:26 AM 9 comments
Sunday, August 31, 2008
WORRIES TO THE SEA PART II
Perhaps it's just that the Arthurs feel like old friends, comfortable and easy. Always fun. As the old saying goes, they are who we would call if we needed bailing out of prison. Not that I think that's going to happen Mom and Dad(who don't want to think about such things) and Arthurs (who don't want to make that drive to Virginia), but if it were to happen, we know they would answer that call. Collect, even.
The Short People and the Arthur boys are much more self-sufficient than when we did this two years ago, so we could relax without feeling that a child was on the verge of drowning at any moment. What a relief! We also needn't worry about a dealing with a fall down the stairs, a two year old with a dizzy spell, or someone coating their face and hair with vaseline when we weren't looking (yep, they all really happened on our first go 'round...I'm sure there were more calamities but time and the Margaritas have blocked them out).
The kids picked up playing as if they had just seen each other last week. It was amazing to see them together again; Joe and Gus were really the Short People's first friends. In fact the Short People liked each other SO much that Janice overheard Kate approach Joe and inquire "Joe, India wants to know if you like her". In typical guy fashion he had no clue what she was asking so he looked at her as if she were insane and replied "Uh, Yeah?". Kate then clarified (and here is where my concerns begin) "No, I mean, do you like , LIKE HER like her?"
Posted by The Turmanators at 10:31 AM 5 comments
Friday, August 29, 2008
Posted by The Turmanators at 7:20 AM 5 comments
Tuesday, August 26, 2008
She was a big boned gal
From Southern Alberta
You just couldn't call her small
K. D. Lang -- "Big Boned Gal"
It is official...I have a diagnosis. I have acromegaly.
What the heck is that, you say? That's what we said, too, when the doctor first started used the term.
Remember Andre the Giant? Robert Wadlow from Ripley's World's Tallest Man? They had acromegaly. This difference is that they developed the disease when they were children, which caused their haywire hormones to tell their bodies to grow without ceasing.
In adults, folks with acromegaly don't get taller, they just get BIGGER. Fat and puffy, bigger hands and feet (here's why you haven't seen in photos of me in quite a while). The copious amounts of steriods I have taken in the last 2 years haven't helped, either, nor has my inability to exercise. Acromegaly also causes enlargement of some facial features, ribcage, other places. And not only is your exterior growing but your organs can continue to enlarge as well, putting great strain on you heart and other organs. There are a myriad other unpleasant symptoms too. In me, it seems to be causing all of the sinus swelling, fatigue and immune system problems that have mystified my ENT and every other doctor I have seen for the last 15 years.
Acromegaly is rare, effecting about 1 in 25,000. It can sometimes be fatal if gone unchecked, and there are some scary things I am more at risk for now. I may have to have pituitary surgery, or may just have to take a very expensive injection every month for the rest of my life. We don't know yet.
Sound pretty terrible, I know, but despite all the frightening aspects of acromegaly I have to admit Tracy and I are so relieved. We were starting to lose hope; we've seen so many specialists and had so many false hopes dashed. To just have a name is a gift in itself, and the thought of a treatment that may alleviate some of my symptoms just sounds too good to be true. Does anyone remember the episode of the Cosby Show when Theo was diagnosed with dyslexia? His whole family celebrated because at last they had an explanation for his poor school performance and it was something he could receive help for. This is precisely how we feel, as odd as that may be. We have hope; something we have been in short supply of lately. And we have a plan, which both of us need.
When I was young my parents had a great book called "Grave Humor". It was filled with true, and hilarious, epitaphs. One of my favorites was "I TOLD you I was sick". We often joked it was the perfect motto for the headstone of a neighborhood hypochondriac. Now, eating my words, I feel like calling several physicians and others who have been both unsupportive and disbelieving and screaming that epitaph into their non-listening ears. Particularly those of us who are women have almost universally experienced being put down and ignored in the doctor's office, and I have sure had more than my share of that. It's nice to have confirmation for what my family and I knew all along...there really IS something wrong.
Another thought that plagues me is how lucky I am to have the resources and education to advocate for myself. The doctor who diagnosed me called me "politely pesky" and stated frankly that was the motivator which kept him on track in helping me. I reminded him that if I weren't "politely pesky" I would have given up years ago when one doctor in particular told me that whatever was wrong with me was in my head. I have had to be my own best advocate, with my very supportive husband by my side. I often wonder about all those people struggling daily with major health concerns because they do not have the ability to constantly push, call, write, and cajole until they receive help. Don't get me on my soapbox about the state of health care in our country...that's a whole other post.
As I type I am waiting to hear about an appointment at UVa with a pituitary specialist; please keep your fingers crossed that we won't have to wait months to get in. The waiting is what kills me...those of you who know me well that patience is not one of my virtues!
If you are interested in hearing more about this crazy disorder this is a great website: http://www.emedicinehealth.com/acromegaly/article_em.htm#Acromegaly Overview.
Posted by The Turmanators at 9:36 AM 6 comments
Wednesday, August 20, 2008
WORRIES TO THE SEA I
Just like the waves
Are you feeling, feeling, feeling like I'm feeling
Like I'm floating, floating, up above that big blue ocean.
Sand beneath our feet, big blue sky above our heads,
No need to keep stressing from our everyday life on our minds
We have got to leave all that behind
John and Susan are wonderful friends. Susan and I like many of the same things, were raised with some similar quirks particular to the South that we laugh about, and she is one of those people that is just easy to be with. She also struggles with some mysterious health maladies so we can often "get" each other when no one else does. John is one of Tracy's Merlefest buddies, has the most infectious laugh and is just one of the all-round nicest guys I know. Their daughters Ellie and Anne (my Goddaughter) are stairsteps to the Short People...Ellie 7, India 6, Anne 5 and Kate 4. They are perhaps my girls' closest friends, and you can see them hosting a dance party in our living room here. They are a fearsome foursome, for certain, and Susan and I joke that we are sometimes glad they don't attend the same school or woe to all their teachers! And us parents, too, when they all reach the teenage years at the same time.
We all agreed that we should do this again (with kids this time... maybe...if we have to) before it gets too cold and dark too early. What a fantastic way to end a day. Thank you, ocean, and John and Susan, for your friendship. And for taking my worries.
Posted by The Turmanators at 2:00 PM 136 comments
Friday, August 08, 2008
There are some things I used to be
I vanished for a while.
I think I have put off rejoining the blogging world because it has just been too hard to describe why I left in the first place. The short answer: I've been ill. The longer, and more accurate answer is that even when I had the energy to write I just didn't have anything pleasant to say.
Finally, however, I think we may at least have found a tunnel...I'm too scared to look for a light at the end because I don't want to get my hopes up too much. There is a possible diagnosis on the table, and I am waiting for lab results as I write. These tests will tell my endocrinologist where I need to go next, and we are hopeful that I will get back to the old me again. The chorus to the "Good Things" is also very fitting:
Don't get down
Good things come
when you stop waiting around
Good things come
when you stop looking
Don't get down
You've just got to stop looking
And so much more. In other words, life has gone on. And I will too. Blog and all.
Posted by The Turmanators at 12:20 PM 5 comments