Dr. Suess

"And will you succeed? Yes indeed! Yes indeed! Ninety Eight and Three Quarters guarenteed!"

Wednesday, February 28, 2007

Wednesday's World

Whoever was driving the truck that ran over me ... please step up and admit it!!

Geepers Kreepers .. I feel like I've been pushed through a keyhole and pulled back out backwards!

The wind is blowing furiously out there ...stirring up every known and unknown allergen to my body ... and my body is in full rebellion.

It dawned on me today. Today is February 28th, the last day of the second month. I started to think about not having heard from the endocrinologist on my blood test results ... and not hearing when my rheumy appt was for March ...and come to think of it ...when was my last monthly lab test for my Cellcept that I take ... January 6th was the answer to that one.

Well Good.

I did a whopping good job of staying on top of THAT !

I'm also a few months late in my dermatology check. Great place for a skin cancer survivor with lupus to be. I think, I was supposed to do my follow up in July.

I guess tomorrow morning I need to take back control of my health management before it spirals out of control and then I get into trouble I can't deal with. blah.

Boy I'm cranky today.

On the good news front. I found a friend from high school. It's been really cool talking to her through emails. Amazing what you learn about yourself 25 years ago when someone else starts to talk about how they saw you.

I'm watching Dr. Phil and the show on the triplets ... I just had to erase what I wrote ..the shows not over yet ...so I don't think it's fair I comment yet.

Benjamin got in trouble at school. Not much. Not much at all. Actually, no discipline was taken, it was a note sent home. "Benjamin could be doing better in science if he was socializing less"


My TURTLE is socializing?!?!?!?!?!?!?!?!!!!?!?!??!?!???!?!?! He does, a lot at church ... and around family ...but at school?? Never. In 15 years ... he's NEVER EVER gotten into trouble for talking in class, out of turn or any such thing!

He doesn't socialize at church during sunday school ...or any structured time ..it starts, and he turns into a turtle ...it's like learning time shuts him down.

So ... something has happened at this new school ...between homeschooling him and the atmosphere of this new school ...to allow him to feel relaxed enough ... to be a normal kid ...and talk during class!!!

YEAH WHOO!! *grin* Not that I want him to make a habit of it ... but this is a good thing.

Monday, February 26, 2007

Grand Rounds

Every week, the best in medical blogging is put together in a blog carnival called Grand Rounds. This week, Dr. Dinosaur is hosting. Grand Rounds 3.23

I submitted my post about Don's bout with polio before I even realized there was a suggested theme. I hit send, then went back and read the theme suggestion ... which was ... things of the past. Well ...couldn't have been timed better!

Between being being encouraged to write it that night by Flea's post ...and then it going right along with the theme of Grand Rounds for the week ... I'd say ... it must have all been Kismit!

Hop on over to Grand Rounds and read the rest of the entries. Always informative and a good use of time!

Have a great day!
Jeremiah 32:17

Oh, Lord God, you made the skies and the earth with your very great power. There is nothing too hard for you to do.

These are two of the paintings given me at my housewarming. I don't have them hanging yet. That's a whole long story. Which, has nothing to do with this post.


This is a shot of Tioga Pass in Yosemite National Park. Look at the power of the water coming over those rocks ... you can almost feel the power of water as it shoots over the edge of the waterfall ... the beauty of the rocks, the sky, the water and the power of it all combine together to form a site that every year has thousands of tourists in awe of what simply exists.

Today, in church, I signed a song. I hadn't signed in a worship service in close to 2 years because of my shoulder. Well, that and a bit of ... nerves. The last tme I was asked to sign, I was unable to sign the song I was asked to sign. I've been signing since I was a young teenager, and well, quite frankly, there had never been anything I hadn't been able to do. Having interpreted at one point, I could sign quickly and effectively, if needed... so a hard song shouldn't have been a challenge. But, this one ... was. It ... unerved me.

I played it for 2 friends who signed ...professionally. Both said they'd not have been able to sign it artistically either. A man who was deaf came to our church 2 months earlier and we'd sang it and I interpretted it just fine. So, I know I can SIGN it fast enough. But to ARTISTICALLY sign it ... I froze. For the first time in my life ... I was 40 years old, and a song was unsignable for me.

Within a few weeks, my shoulder really started to hurt. Signing became impossible, literally, and I didn't have to worry about the fear. It was easy to put it on the backshelf. It, was a non issue!

Then I got my shoulder fixed ... last April. It was probably ready to sign ..by August. But, today was the first day I signed in front of anyone. It was the right song ..at the right moment. I was asked on the spot ..didn't have enough of a chance to say no or to think about it. It was a song that was crying out for me to sign ...

There is a fountain ...who is the King ... Victorious Warrior and Lord of Everything! My Rock My shelter! My VERY OWN! Precious Redeemer who reigns upon the throne!

As I signed ... the power of the fountain in Tioga Pass came to my memory ... Anyone who's had the privilege of standing near a waterfall ...of any size ...can understand the glory of a waterfall ... THERE IS A FOUNTAIN!

Alas, it did make me homesick, again, for the mountains of Yosemite. God is going to have to put Yosemite in my backyard in Heaven ;)

But I'm so grateful for a God who's so powerful, and so gentle at the same time ... so personal ...so protective, my shelter, my rock, My VERY OWN! What a privilege it is to be able to worship.

Saturday, February 24, 2007

1950's aren't necessary anymore

I've posted before about my husband's having had polio and it's effect on his body.
Two things happened today that made me decide to post again.

1. A phone call, on a Saturday, from his Pulmonologist.

2. Flea's post.

I was debating on posting when I read Flea's. That made the decision for me.

My husband, is 51 years old. He contracted polio at the end of the epidemic. Many his age got the vaccination. He, for whatever reason, did not. He was born November 21, 1955. Healthy, strong, large ...and in a tall family. Dark Curly hair, big ears, HUGE smile. Ornery look. I tease him that his childhood pictures look like "The Beav'"

Summer 1959, and he was 3 1/2. He became ill. It soon became apparent it wasn't just any illness but he was very ill. It became a fight for his life and a lifetime fight. Polio put him in an iron lung, took him away from his childhood home in Northern California to stay in a children's hospital in San Francisco where his mom could only visit as she took care of her other 4 children. (No Ronald McDonald Houses then!)

As polio ravaged the body ... eating away the muscle tissue ... crippling his body ... he managed to fight ...with multiple surgeries, unimaginable hours of heat packs and physical therapy, full body casts, hospital stays and even birthdays in the hospital .. He SURVIVED.

His body, is not a normal body.

That, is a picture of a kitten on his rib cage. The curve in his spine, severe, and the rib cage does not expand to leave much room for his lungs.

His chest wall muscles atrophied to nothing, and they fused his back 2/3 of the way up, but did not put a rod in it (they WERE around, we don't know why they did not.)
When I met him, he was 5'5'' on one foot, and 5'3'' on the other. The doctors suspect he'd be ABOUT 6'3'' had he not had polio. That, is how bad the scoliosis & damage is.

He weighs all of 98 lbs. I think I realized just how bad he'd been effected when my youngest was about 8. We were watching a documentary on the Holocaust, as they were throwing the bodies into the mass graves, my son turned to his father and asked "Daddy, did they have polio too?" It struck me, he's THAT skinny! He has THAT much atrophy. Just add the scoliosis to his body, and that's exactly what he looks like!


How he walks, no one is really sure. I've lost track of the number of times that we've been to see yet another doctor to see if something can be done to help him, and the doctor looks around for his wheelchair at the end of the appointment. At that point, we laugh and he hops down from the table. The doctor then, a little embarrassed says "I guess I should examine your gait huh?" Our physical therapist has no explanation for why he can walk. There isn't enough muscle tissue to support his weight ... oh well. It's working, don't mess with success right?

He is wearing out. He needs a cane most of the time now, and we wanted the Habitat house because it was wheelchair accessible for when that's neccesary. Hopefully later than sooner. He fatigues faster than he ever imagined.

The call tonight ... concerns us. He had a sleep study last week. He was hoping to prove that the previous 2 studies that said he had apnea were wrong. The pulmonologist had given him some hope that they'd find something besides apnea, but, there was probably something there, because of the polio/scoliosis.

So, less than a week after the study, he calls, on a weekend evening ... to say "you have apnea, and not only do you have it, it's SEVERE." A regular CPAP won't work. So, the pulm wants to redo the study and try another machine, but my husband couldn't remember what it was. But, he says he's not going to do it, because he (my husband) doesn't think they'll find something to help him. (men!)

I am trying to convince him ... that some help, is better than no help, and unless they find out, he won't know for sure.

In the meantime. If you think that the childhood diseases that we vaccinate against are really harmless diseases ... I challenge you to walk a mile in my husbands body.


Friday, February 23, 2007

In A Little While ....

I was 18, and Amy Grant was the princess of Christian Music. I loved her music. I could sing with it and the words spoke volumes to me. There were always a couple of songs that meant a lot to me. A couple, I've never forgotten and think about frequently ... Fat Baby, El Shaddai to name a couple.

But one ... I'd let my mind forget. Or time took over. Not sure which. It was a song that I would play over and over and over again. The tape wore out because, of this song. I'd play it, hit rewind, play it again ...all while driving mindlessly around the city singing it at the top of my lungs.

It really wasn't a top of your lungs kind of song, but it was a top of my lungs song. I have a few of those now. Usually Matt Redman songs. They keep me grounded ...they remind me that God is in my life ...and that he has ME under control even when I don't think He does.

It was a hard song ... it was about a letter from The Father ... I was so freshly grieving the loss of my step father. I wanted it to be a letter from Daddy ...but I learned ...through singing it over and over again ... God is my Father. His Word is a letter to me ...and when I hurt ..that is where I need to go.

A pattern developed in my life ... because the way I was raised, because of the teaching I had ...and in large part because this song reminded me to. The pattern of when I just can't take any more ... to open the Letter from God. To go to His Word ...to find the Words he's speaking to me. I learned that it was temporary pain, and God's Word was eternal. I learned that God loved me no matter how bad my day and my purpose was to live for God.

I didn't set out to learn those things. I think it'd been much harder to learn if I'd known that was what I was working for. But, as so many other times in my life ...God used a song to touch my deepest pain, fear and hurt and to teach me to lean on him.

Many songs have come and gone to replace the song. I hadn't even thought of it years. I doubt I've even heard it since my husband and I got married 19 years ago! We take off in the car tonight ..and our Christian Radio Station KXOJ is having their 30th Anniversary. They're playing a lot of hits ...old and new. They played a song by Petra from the 80's and it was such a thrill to hear. Then suddenly the piano/guitar started ... I felt myself lighten as I about yelled "I remember this one!"

The words started ..and I started to sing along as if it hadn't even been a day since I'd heard it. Then ...the tears started to fall. The years that have passed in between that life line and now ...and how much I learned from it ...and how true it's become. How often the promise in the song has proven true for me. In A Little While ... We're just here to learn to love Him

Got a ticket coming home,
Wish the officer had known
What a day today has been.
Then I stumbled through the door,
Dropping junk mail on the floor.
When will this day end?

But then your letter caught my eye,
Brought the hope in me to life,
cause you know me very well,
And I bet you wrote me
Just to tell me,

In a little while,
Well be with the father;
Cant you see him smile? (ooooooh....)
In a little while,
Well be home forever,
In a while....
Were just here to learn to love him;
Well be home in just a little while.

Boy, that letter hit the spot--
Made me think of all Ive got,
And all that waits for me.
Guess Ive known it all day long;
Wonder where my thoughts went wrong.
When will my heart believe?

Waking half way through the night,
Reaching toward the lamp for light,
Picking up the word I find;
Heres another letter
To remind me.

In a little while,
Well be with the father;
Cant you see him smile? (ooooooh....)
In a little while,
Well be home forever,
In a while....
Were just here to learn to love him;
Well be home in just a little while.

Days like these are just a test of our will.
Will we walk or will we fall?
Well, I can almost see the top of the hill,
And I believe its worth it all.

In a little while,
Well be with the father;
Cant you see him smile? (ooooooh....)
In a little while,
Well be home forever,
In a while....
Were just here to learn to love him;
Well be home in just a little while.

Monday, February 19, 2007

And That's What It's All About!

First ... I wanna complain about having to switch to the new blogger ... don't like having to switch ... their experimental journey into Beta blogger wasn't all that successful ...forcing everyone to switch ... is rather ... um ...shall we say ... hard handed? I hope they don't have as many problems with the new blogger as they did with Beta!!

Ok ...grouch over.

We had Benjamin's IEP meeting on the 9th. I think it's taken me this long to get over the shock to my system to write about it.

We fought really hard to get into this district.

We worked hard to move here ... we've been working at moving here since Benjamin was 4 years old. He's 15 now. We exhausted every means possible to get out of our mobile home (paid for, lot rent only) and still be able to afford to live ...
We tried ... over and over and over again.

In the meantime ... we fought the district we were living in ... tooth and nail ... for every service Benjamin got. We took them due process two times, mediation once ... and we fought ....and fought ...and fought ...

We fought hard to keep our son learning ...and we were told over and over again .."we don't have to do that" '
"special education doesn't provide for that"
"we don't accomodate for that"
"he doesn't qualify for that service"

We were told some outright lies ....
we were told some half truths
and we were told some white lies

we were told some shocking truths that we couldn't believe they had the GALL to actually say outloud ....

"We don't accomodate for any one individual child, we accomodate for the whole classroom"
"Our LD classrooms are overcrowded, we just pay the fines, it's easier on the school district"
I think the worst ... and most appalling ... and if I had it on tape, I'd have done something about it ... when I complained that Benjamin was failing, and there needed to be something done ...and done now... we were told
" You know, statistically, with his age, gender, learning disabilities and socioeconomic background, no one really expects anymore than the level he's performing. His grades are not going to raise any red flags with the powers that be, so there isn't anything more that we have to do." (referring to the state and federal agencies and No child left behind)
Excuse me ... because he is a junior high boy ... with learning problems and he comes from a poverty level background ... he's statistically expected to fail ...so you don't have to do anything other than let him fail because no one is going to see any red flag when he does fail?????

Well ... I saw red ... I can't remember if that was before I had a blog, or after ...if it was after, it would be posted some where on this blog.

So ... we wanted out ... and finally Habitat came along ... and we applied. Our pastor, didn't have a lot of hope for us ... physically ... it was a lot of work. There were financial requirements ...and quite frankly, he wasn't sure we could meet them. So, while he sadly agreed it was worth applying, he didn't think we could do it. So ... we applied. We, much to everyone's surprise, were accepted ...we barely fit the bottom of the financial qualifications .... we weren't sure about the physical labor ... we'd only have the shot ... we'd have to do our best and see ... our sons education was at stake ...

so ..for 3 years ...we fought ...unfortunately ...some of the fight with the school was going on while some of the fight with Habitat was going on ....

Finally ... we got the house. We moved in ...and after 2 months, I had the nerve to put my son in the school district that we fought so hard to move into.

It took them 3 days to decide what took the former district 4 years to decide. He needs help. It did not take a court order to give that help.

They had originally decided to carry on the former IEP ... until they read it ... they had to re write it because of class time ...then realized ... it wasn't adequate anyway ...so it got re written all together. They kept apologizing to me for having to carry on the behavior plan. I knew he'd had one ... I'd not seen the last one he'd had ...they'd done it without me there ... I couldnt' figure out why the new school kept apologizing ... why in the world are they apologizing ...it's just one to insure his work gets done!

I get to the meeting ... the IEP is unlike one I'd ever seen. Benjamin is 15. We've been dealing with special ed and IEP's since he was 3 ... and it was unlike one I'd ever seen. I'm given this form to go over and I'm overwhelmed by it all ...and the teacher looks at me kind of funny ..I should know this ...

I've never seen this before.

she is very surprised ...she knew she couldn't find it in his file, but she thought it'd been missing ... but not there ...ever? It was a state form ...not a school form ...

The form ...modifications to be made by the teachers FOR the student ....

The only thing we've ever done before is what BJ would do ...

So ... we get this whole list of what THEY are going to do for HIM to help HIM succeed. Probably one of the best ones for him ... assignments and tests ...read to him orally ...and he gets to repeat them back to the teacher so the teacher gets to make sure he understands the questions!


The behavior modification plan comes out ...apologies start again ... I see it ... the old district has 2 things
Not completing assignments

My face went numb ...really numb ... badly numb ...with frustration and anger ... as tears welled up ... I described to the teachers what they were saying was laziness ..and how it was really being overwhelmed.

His english teacher verified that he does exhibit that behavior ...and it is in fact overwhelmed.

This regular ed teacher, had him for less than 2 weeks, and had already figured out that it wasn't laziness ...yet these people had him for 2 years and called it laziness.

Last week, I got phone call ... we're sending a new behavior modification plan out ... we had to rewrite that ... we can't ... we CAN'T have laziness on the form ..it's against policy. We've talked about it and went to our special ed director with it. We don't use that word in this district. Especially not in writing ... to label a child as such is destructive.

I expect to get the form with another adjective to replace lazines .... 2 behaviors on the behavior modification ... but when I get it ... there is only the one ...

and it says Student struggles to turn in work ...

I cried .... tears of joy ... This ...is what we fought so hard for. This, is what it's all about!

Thursday, February 15, 2007



A bit of a shock to my system ... I planned it for about 3 months .... cutting my hair to try to make it look healthier and thicker ... I don't like it much. I want my long thick healthy hair back. But I'm not going to get it back. So ... Hopefully, I will get used to this.
My oldest son loves it.
My youngest doesn't.
My husband doesn't. (but he was with me and held my hand while I did it)
I don't.

Saturday, February 10, 2007

I Always Knew I Belonged Here


A teddy bear, that no one wanted, bought by a little girl ... taken home ... repaired ... and made to be acceptable ...to fit in .. to show that he belonged .. he found a home ...

When the story ends Corduroy sighs and says "I always knew I belonged here"

That's how my home is beginning to feel. I was looking at the pictures on my side bar this evening. The ones of the house in building stage ...the brand new, and empty living room, the brightly painted walls ... the cabinets empty .. and newly built, waiting to house our family.

We've been here for slightly more than 2 months. Yet, it feels more like home than the mobile home did in the whole 6 years we lived there! Before that, we'd lived in a smaller mobile home, and that one, it felt like home. It was older, and there were some repairs that needed to be done ... but it was cute ...and we loved it. It, was home. It was where my kids were born, and where we brought up our babies. We loved that place.

The other trailer, while, we appreciated the thought behind the way we got it ... we never liked it. We didn't like the lay out, the trailer was falling apart when we moved in ...and continued to do so more and more. It just wasn't ours. It was always ... his sister's home.

So we get moved into this house ...and it immediately became home. It was so funny ..the first few weeks were this pendulumn between feeling like we'd always belonged here ... and a question of how in the world did we get here. 2 and a half months later ... it's settled. We belong here.

We've taken our less than perfect family, with our health problems and our disorders and our oddities and our quirks ... and made them fit. We've sewn on the button of acceptance. Now we can sit back, smile in the comfort of our own home and say in all confidence ... "We've always known we belonged here, we are home"

Home Sweet Home

Thursday, February 08, 2007


Last week, I had an appointment with my psychiatrist. I've posted about him before. Wanda and I call him Dr. Bobblehead. He's a dear man, and a great psychiatrist. I would dare say, one of the best. However, he has this annoying ability (ok, so it's what makes him good at his job) of being able to read me like a book.

So, he walked into the waiting room from the outside, GLANCED at me ... 1/3 of a second ... couldn't have been more and I knew he knew something was wrong. WHAT THE?!?!?!?#?@#@#adfljkrjwrjoweiouisojwlermwailucovhclnvihweroho;nrmwlaehjoihjc ... ok, swearing over.

This isn't the first time he's known in a heart beat that I wasn't ok. It probably, won't be the last. Especially if history of past behavior is the best predictor of future behavior. (growl)

However, I'd walked in determined that I was not going to let him in on the weekend's pain. The fact that he was already keyed in ... just annoyed me more.

So, he can't get me to open up. Flashbacks for him, I'm sure. It took him 2 years to get me to uncross my arms! It probably took him 4 months to get a smile out of me. We were 4 or 5 minutes into the session and I still hadn't said anything about what was happening in my life. I know now, it had to be frustrating for him. He could see it written all over me ...and ... there had to be a reason for the walls I'd suddenly thrown up so high. He knows me too well.

So, rather than let the time go ... he knows that I'm feeling pressure, too much pressure over the success of my book. He comments over my nice new clothes and says that he hopes that I am not feeling pressure to dress up for appointments or that I feel like he's putting expectations on me to look professional.

I immediately tell him that no ...the clothes are not new (they weren't the sweater was 20 years old, jeans and shoes came from Salvation army, purse from a garage sale.) He tells me that they are all well cared for.

I ... became very insulted. I didn't tell him right away ...

So, I start to tell him about Benjamin going back to public school to get the attention off my appearance. But I was LIVID that he'd called attention to my appearance.

I also, as my therapist said today ... was pretty mad that I didn't win the Oscar for my performance that everything in my life was AOK ... because he read me immediately.

So, we get through half the appointment ...finally .. and food comes up. My insulin resistance is brought up. How I'm eating ...and the fact that my A1C is 3.7. He slowly turns around and looks at me.
An A1C of 3.7 is low for anyone ...but for someone with insulin resistance?? It's not likely ...unless ... "you've been fasting, a lot"

yea, well ... it's a stress releaser ...remember? Got a nice little lecture on the body feeding on itself and muscle tissue ...including the heart. yada yada yada ... blah ...
He asked me to please, stop, rest, he's not asking me to be perfect, just stop being self destructive.

You know, if he wasn't so dadgum gentle when he said these things ....

So I got home, and I emailed him ... I told him that I was upset with him complimenting me ... that I didn't feel I'd dressed up ... that I'd worn that sweater because it was wear red for heart disease friday ..and I never come in dressed sloucy and I can't win ... and expectations of me ...and ... and ... and ... basically ... I picked a fight with him.

After emailing back and forth several times. Lots of tears, He being the gentle soul that he is, apologizing immediately, saying we'd touched on a tender area and he was so sorry. It needs to be explored ...

I quickly went into my logical side and wanted to say ..all is forgiven ...let's forget about it ... he, being he ...said oh no, we don't need closure this quickly. If we do, we might miss something important. We've touched on a nerve, and something tender, this needs to be explored.
eyeyeyeyeyeyeyeyeyeyeyeye ....

All this ... because I didn't want him to notice ... the fact that I didn't want the attention ...got me more attention ... great! growl

Friday, February 02, 2007

Aristocratic Title

Pearls and Dreams

Hat tip to Artimis .... Who from hence forth shall be known as Venerable Lady Artemis the Paragon of Gallop Hophill

My Peculiar Aristocratic Title is:
Milady the Right Reverend Peggikaye the Omnipresent of Withering by the Wold
Get your Peculiar Aristocratic Title

Tooo funny ...too funn not to do ...get a title yourself to enjoy the weekend.

So thank you Venerable Lady Artemis the Paragon of Gallop Hophill

Have a great weekend My Lords and My Ladies!