Kylie Jade Kesterson

Last June, I posted about a friend's baby, Kylie They'd found a tumor in her brain ...and they were going to operate ...and we needed to find out. What was the tumor? was it dangerous? It was, in fact, very dangerous.





Teresa and Kylie Kesterson, and family, began a fight to fight this monster ... an ATRT tumor.

This morning at 4 am, Kylie went to be with Jesus.

No more pain, no more needles, no more surgery. She can see normally out of both eyes and she can run and play like other 2 year old girls.

Kylie Bug ... you touched my life in a way you'll never understand. You were a sweet little girl, with a firey spirit and I will forever be glad that you were a presence in my life. Thank you.

Kylie Jade Kesterson
January 18, 2005 to April 28, 2007,



Kylie with her 2 brothers.

Denominationa footfalls

You scored as Evangelical Holiness/Wesleyan. You are an evangelical in the Wesleyan tradition. You believe that God's grace enables you to choose to believe in him, even though you yourself are totally depraved. The gift of the Holy Spirit gives you assurance of your salvation, and he also enables you to live the life of obedience to which God has called us. You are influenced heavly by John Wesley and the Methodists. Evangelical Holiness/Wesleyan 93% Fundamentalist 79% Reformed Evangelical 64% Neo orthodox 61% Emergent/Postmodern 43% Charismatic/Pentecostal 39% Modern Liberal 36% Classical Liberal 29% Roman Catholic 21% What's your theological worldview? created with QuizFarm.com

Friends don't let friends ....

http://www.youtube.com/watch?v=B6zWhM1woRI

Power

In the first month of my blogging ... I blogged about discovering that my life could be compared to a train ... and this week ... I came across a train on it's tracks and it made me think of life in terms of a train once again. I'd forgotten about my own life comparrison to a train. Until I decided to blog about it.

The minute I started to do so, my brain went ..wait? What did I say before ... So, I found it ...

Tuesday, November 30, 2004
I have learned I am a ChooChoo train ......

I think I have figured out how I cope with things. I've been calling it compartmentalizing, but it's more than that. I have people who will come up to me a week or so after I've been sick, or after the boys have been sick and ask if everything is ok and I just give them this blank look, I've gone on, I have no clue what they''re talking about. Those things happen so much, once it's over, it's over ... I just say that I've compartmentalized it and gone on, and that's the best explination I've had ... but today, I came up with a better one ...

I'm a train and I have all these train cars that I have that I'm tugging behind me. Some, like lupus, MG, kids with TS are permanent, other's like flu and Bj's meningitis are temporary.
When I get sick with the flu, the flu car gets coupled to my train, making my train just a little harder to pull, I need more steamto get to where I'm going. But when the flu is over, I stop,and uncouple that car and leave it behind, going on with my journey.
The eating disorder car, that's probably a permanent car, but it's cargo has been unloaded, it will always be attatched, but the heavy burdened load it was weighted with has been removed, so now, it's just an empty car that I have to be careful doesn't get loaded up again.

I have to be careful that I don't keep going on my journey with train cars that don't need to be still attatched. If one is done, it's important to remember to stop and uncouple it, dragging cars that are no longer existing, is going to make my journey harder. (If I'm constantly thinking about how many cars of colds I've had this year, and not uncoupling them, I need to know how many I've had so my doctor's can take good care of me, but not dwell on them so to speak)

I also need to make sure that I have all the appropriate car trains attatched. So that my train is properly balanced. I have my church car, my family car and my friends car.

When the journey gets hard, is it the tracks are going through mountainous regions ? or is that I have more cars attatched and are they permanent and therefore I need to figure out how to add more coal to the engine? Or is it that a temporary flu car has been added that will shortly be uncoupled and out of my way?
*************************************************************************************

So ... I've got that part figured out ...but what I failed to figure out was ...who and what is controling the engine cars? AM I the engine cars? Am I the engineer? Do I simply hire someone? Contract that job out? Or, am I the engine of the train itself.

The engine of the train, is in fact, it's most important factor.


Without an engine ... the train simply sits on the tracks ... doing nothing ... and going no where ... just sitting waiting for the cargo to be loaded or unloaded. Sitting there ... rusting ...useless in their journey. Their wheels cannot be used for what God intended the wheels to be used for, because the engine is not pullinging them.
They sit ... quiet, and unassuming, apparently useless, maybe having had a use at one time, but now pitiful and with soemthing to be written off as potentially useful.


With the engine, the train can work ... in the coldest of weather, to work in the snow and the ice ...and in the lonely times. When others say it may not be the wisest time to go, the Engine gives the train the power and strength to go where it needs to go .. to keep the train on the track ... and to get to the destination, safely. Sometimes a lonely, quiet steady job, but it will get done.

Then there are the times when it feels like we're never going to be seen or noticed again, the train engine, will for sure, get ALL the glory. The maginficent engine ...and all it's hard work ... everything it's done to save us ... and all it's done to put help us ...to save us and to guide us ..to protect us and to lead us ... and we just want to be shown off ...just a little bit?

Would it really be such a shame for the train to want to be separate from the Engines every now and then? Is it really that important/ Do we REALLY have travel wITH the engine every single time? Why ... why can't we, as the train make it on our own ...just once ... we could give the credit to the things the train engine had taught us ...

So I think ... tonight ... we are going to try .... to do things ourselves.


The train itself will move the heart and goals and dreams of the spirit along. Making sure that the callings of God and the work He's called us to get done. The train, without the Glory Seeking Engines ... will now be responsible for getting the body and the body's family to all appropriate functions. Physically and emotionally.
This should be an exciting time in the New Eagler Transportation system!





What? ... What? ... you mean there is a problem? What? You've had all of a couple of minutes and you can't even get going? What do you mean you can't go? It's simple ... the back car has Nanna on it, she needs extra care and be transported to and from work. Get going!

What?
What? push it?
What? we can't? are you serious?
not even a little?

Well, get nanna to sit and take a day off.

Sigh ... prayer car ... what do you mean the prayer car is falling a part. Yes, I agreed to pray for a certain number of people, Beths, house, and Melissa at college, Wanda, and Mom. The funeral today ..what's the problem? What do you mean?

WHY do I need a train engine to pray? oh that just doesn't make sense! I'm going to have to come back to that one!

I'm so frustrated, how hard can this be ... lets try to get the directions straight ... shouold we go this way or that way...the map isn't even clear! There are so many decisions, Why is it when I'm reading this in the navigators car, it all makes soooo much sense????????

I'm going for a walk ......



The full train ... the engine .. it gives the train it's power ... the power comes from the Holy spirit ... it is the guidance needed, the navigation ... the wisdom ...
The engines ... give extra power .... for the prayers to be powerful and spirit led!


The train .. .is all me, but cannot function without the fullness of the holy spirit ( the train engine) He is the one who enfuses my train with the power to be what it was called to be ... and is destined to be.

We saw a train sitting ... 3 miles from it's train engine ...and the engine just drove off ... leaving it's train sitting there and I thought ... no Lord ...please, don't ever leave me .... take me along with you. Infuse my train with your power. I am useless without you and I simply want to be your servent to do your desire.

where I've been

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Paradigm Shift

When I took intro to psych I first heard the term Paradigm shift. I could not quite grasp it ...and I could not get my brain around it ...no matter what I did ... I could not understand what the concept meant.

So, Sunday, a speaker comes and is explaining the ressurrection of Jesus Christ and how it changes the face of religeon for all of mankind forever and my brain went ... CLICK! PARADIGM SHIFT!!!!!!!!

So, while the speaker didn't use the term ... I finally got the concept. In doing so ... it was a puzzle piece to my life that I needed ... desperately.

I have mentioned a few times since moving into my new house and having my book published that I've had a bit of trouble enjoying the fruits of the wonderful blessings in my life. The change and adjustment has been so severe I just can't seem to get my brain wrapped around what has happened or why and how and why I ended up here ... and welll ... quite frankly, it felt like I was a complete fraud taking advantage of a system or program or something. I had no business getting the blessings I've been given.

The better it got, the more guilty I began to feel. Then, it all came together ...all at once ...and the puzzle piece ... in one fell swoop fit together and my life was changed .... I went through a HUGE Paradigm Shift.
Nothing would be the same ...not the way we look at things, not the way others look at us ... not the way we do things ... everything involving our lives required us to change the way we lived life on this planet.

And I froze in fear. I could not function. I had this wonderful beautiful house. I had this terrific marriage and wonderful boys ... I have a book that's published and they're paying mme for it. I have friends, who really love me. I have a safe house that is beautiful and I can have friends over. I have a church that I'm active in, and I have leadership responsibilities as well as privileges in ... my health, while not good, has been far worse.

Just what in my life would be changed? What could you change? What if I were given the chance would I change? Really ... my health, ya,that's a given ...but in the grand scheme of things, that's a small thing I can function ya know?

So ... I've got this great life ...so why am I frozen?

Then I learned about Paradigm Shifts ...and I learn that they ALWAYS move ...from one state to another ...and the second state is ALWAYS a more positive, more stable state ...but that the GETTING to the state requires a lot of churning, and sometimes violent turning of ideas, ground and moving around of things standards up turned ideas upended ... the paradigm shift might happen violently and suddenly but there is years of hard work and preperation that goes into the paradigm shift!!!! no paradigm shift happens out of the blue and they all happen because of someone's hard work and perserverence.

So ... I'm sitting on the other side of a paradigm shift ... just having my life as I knew it, up ended ... the life I knew ... one of poverty, dilapitated trailer, bad marriage and unknown name and no career of any sorts to suddenly ... litterally ... over night ... to a good marriage (great? marriage?) a solid house, light on the path of the tunnel to get out of poverty and a career!

Success ... failure to success ... overnight ... literaly!

Granted .. it didn't happen quietly, or without pain or lots of pain and churning to get there ... there was tons of preperations to get us to this point ... but it happened. But when it happened, it awas not a gradual process like one might expect, it was a Paradigm Shift.

My reaction was to become stunned and frozen.

I didn't quite realize it ... but I had reacted with guilt. I'd felt like ... I'm the girl who fails. I'm the girl who doesn't complete things. I'm the girl who doesn't finish. I'm the girl who is irresponsible. I'm the girl who doesn' do what I need to do to accomplish what needs to get done. I don't deserve to have good things.

There fore ... this good marriage
this house
this book being published
this great family
this set of friends
these responsibilities at church

They all belong to someone who has earned them ... not to me! I've stolen them from someone else ...they are not mine ... I've stolen someone else's birthright! I felt guilty and horribly horribly desperately guilty for what I had. Enjoying what was in front of me wasn't happening ... All I felt was guilty.

This week ... I've been challenged to name what went into the forming of the paradigm shift .... and to name the last time I failed, the last time I quit, the last time I didn't complete something or was being irresponsible ...
I don't know ... I can't find those ... they are not parts of my current character!

Who I am now ... is determined ..and I have perserverence ..and I have patience and I have self control and I have the wherewithall to do what God has called me to do ...and you know what ... I didn't steal these things!

They were not handed to me on a silver platter (as I had been feeling they had) I worked hard for them, and God really was working with me ...and is simply rewarding me and now he wants me to be a good steward of the things he's given me.

wow. that's a whole nother subject isn't it?

inner child

How Old is Your Inner Child?

My inner child is six years old!

Look what I can do! I can walk, I can run, I can read! I like to do stuff, and there's a whole big world out there to do it in. Just so long as I can take my blankie and my Mommy and my three best friends with me, of course.
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Stones will cry out ...

Luke 19:40

But He answered and said to them, "I tell you that if these should keep silent, the stones would immediately cry out."



I was raised by a mother who loved to sing praises to God. From the time I was barely able to talk, I knew what praising God meant. I don't know when I learned to love praising God ..but I knew very young ...that He loved me ..and I loved Him ...and I could never sing His praises enough.

My parents helped to start a church when I was young. Mariposa Christian Fellowship. We called a pastor from Alaska down to pastor it. Leonard and Elaine Wilkerson. They were a wonderful couple and my mom was very close to both of them. We all were. Sometimes I would sit next to Elaine during the services ... but I always sat where I could see her.

After church, I'd go up and give her a hug. She'd always smile and hug me and say "as long as you're around, the rocks will never get their chance!"

Several years ago, Elaine died of breast cancer. The last conversation I'd had with her, she'd told me "never give those rocks their turn!"

My mom would always giggle/laugh. You could see her motherly pride.

So, it's 2007 ...and I've been asked to, yet again, sing with the praise team for an Easter special. Once again, my voice is terrorizing me. Confidence fading and fear rising I had decided to back out. Today ... I had decided I just could not it. During the final rehersal, my chest was hurting so badly I could barely stand. So, while we sat down to say the final prayer, I started to ask God to give me the words to tell my director that I was going to back out.

Our director started to talk about the priviledge that it was to do this, and how happy she was we could. She mentioned how awful it would be if God had not given us music! How terrible that would be. Then she switched gears mid sentence and mentioned some rocks on her piano at home ...that were there to remind her ...that if we don't praise Him, the rocks will cry out.

I felt a finger tap me on the shoulder and I looked around. I didn't see anyone who would have touched me. My director had tears in her eyes ... and I suddenly knew ... I had almost let the stones cry out.

I felt like God had wanted me to do this because my mom had so enjoyed watching me sing when I was a teenager. I don't know how many more Easter's I have with my mom fully here ..how many more Easter's will she be aware of what is going on around, will she know that it is me singing in the group? How many more will she know that it is her daughter up there? So, I'd agreed, just for my mom ...and I almost backed out ...

I almost let the stones cry out ...

Aware of April

One of the most staggering statistics regarding sexual abuse is the numbers that go unreported.

Many say they read those numbers with a cautious eye ..jaded eye ..or simply don't believe them.

They don't understand how they can come up with numbers of 'unreported' incidences ...

I did some looking into that ...and I think, I got it figured out.

I ... am one of those who have gone unreported.

My 'incidences' have never been reported to the police. No sherrifs department, court house or district attorney's office has ever even heard of me. I'm not listed in any crime victims data base ... I've never been seen in the hospital and had a 'rape kit' done on me ...

But .. I did ...after 30 years ... tell my psychiatrist. I am one of those who have told ..but did not report. I have become one of those numbers of "every year ... people are injured and it goes unreported."

The word reported ... if I'm understanding correctly .. is a legal term, rather than a revealing term.

I have never pressed charges ... I've never reported it.


So ... the next time you see one of those statistics ... take your skeptisism out of the way and make room for the truth ...they were never reported to the police or to the legal authorities who could do something. But it was told, to someone ... a doctor, a psychaitrist, a therapist ...who had to keep their name and identity confidential ... but could let a fact gathering group know ... unforunately, I've got yeat another one who won't tell.

So, I'm going to borrow a blog doctor for instance because she is someone tangible to most of us ... IF I'm understanding this correctly ...

If Dr. Deb had 10 patients this month who were assaulted. 2 told the police ...and only 2 told her ... and the rest kept it a secret .... for 10 years ....

her statistics would be

2 reported
2 non reported
6 fine as far as we know ... 10 years later they tell her, but don't report to the police
now ..they are
6 non reported.

All are hurt ... all injured ... and all wounded. Some start their journeys of healing right away, but some choose to try to hide it and try to self destruct and ause avoidance techniques to deal with it before they finally try to put themselves together the right way.

None of them that did not turn in an official report to the police are considered a reported crime. Even if they did, in fact report the crime to their doctor, if nothing legal was done, it is considered, a non reported crime.

Is that ... clear as mud?

For those in the medical feild ... please feel free to correct me ...and hijack my comments to help clear up the muddy waters.

Keep the candles lit .... one candle at a time ... we can take back our lives.

April

More information will follow this month.

Just in what form ... yet to come ... I'm not sure. But for now, today, April first, I will start with that banner.

Hat tip to Fat Doctor

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Short post ...contemplating some thoughts

I've been having some trouble with the success I've had in the last few months.

Good stress ...is still stress.

I've posted about it a couple of times ..and to some people I'm sure it makes no sense whatsoever ... how can you be upset that things are going the way you wanted them to?

Why would anyone go into panic when something goes right?

Well ...

I've been thinking ...

At age 12 ... I was assaulted the first time ... and that's when I started going into survival mode (PTSD diagnostically) and at 14 my step father committed suicide ... and I found his body ... increasing the PTSD ... and I'm not going to start counting off the further trauma's ... let's just suffice it to say ...there is a list that comes down the pike for the next 10 years ...or so.

Finally, at 27, my youngest son is born ... and I would say that the last real TRAUMA was the day they told us that his brain had not fully developed and we saw that MRI ... and the missing brain tissue, along with the Arnold Chiari Syndrome (essentially pinched brain in the back of the brain) and were told that he had Craniosynostosis and talk of craniofacial surgery began .... (this was afer my myasthenia gravis diagnosis, but only by about 8 weeks after)

So ... from 12 to 27 I had a series of trauma's ... that kept me reeling tossed like a ball in a hurricane ... I am amazed that I survived in one piece. My faith, is probably the only thing that kept the ball from going flat ... or popping ... and all that happened is that it got tossed from here to there ... and just didn't do anything but get tossed.

Then ... from 27 to 37 ... I hit survival mode ... I had 2 kids, I was sick ... very sick ... and I had a sick husband and my mom was sick ..and I needed to raise these kids. There was no time to think about any trauma's or any pasts or anything about anything ...and I just needed to get through today to get through to tomorrow and get through to the next day. Thoughts of yesterday or thoughts of the future didn't matter ..survival ... that was the key. One day at a time never had a more literal life than that period of my life.

At 36, I entered treatment for an eating disorder ...and I began to look at my life a bit ...and I started to slow down the survival mode a bit ...and as I approached 37 years old ... the survival mode ended ...and I began to live ... and maybe ... just maybe I would take a chance on dreaming? Would I dare to dream?

I even wrote something about daring to dream. My pastor had me read it in front of the church.

So, I started to have a few dreams ...here and there ... and as I started to dream I realized something .. I had a future ...and if I was going to dream for that future somethings were going to have to change ...and for those things to change ...it was going to take some work ..and for that work ...it was going to take some fight ...and so .. I started to fight for the change ...

and I fought ..and I fought and I fought ...and I won ...and I succeeded and suddenly ... My dreams that I hadn't really taken the time to dream because I'd been fighting for the change were sitting in my lap ...

and I'd never had a chance to plan for success ...or map out a plan ...and I went straight from dream to fight to win ..and there was no stopping in the middle for planning ... and I expected to have 40 years in the dessert before I entered my promise land ...and well ... God didn't lead me around the desert for 40 years ...and instead of trusting God I just freaked out ...

So ... now I need to figure out how to just sit and rest and enjoy the success and map out the plan for the success .... crazy huh?

How did I get here?

A little over a year ago, I was posting about starting to sing with a special choir for a spring cantada for the prayer service. I swore that was it. I was done singing when it was over! It had been so very difficult.

My service in worship ministries far from over ...just my vocal service. My voice is gone ...and it takes too much out of me and is far too scary for me and too taxing to do the vocal part of worship ministries.

So ... here we are ... a week and a half before Easter and I've got a CD on .. listening to the soprano part of the music to One Holy Lamb ...because I've been talked into singing with an ensamble!

A few weeks back, I was minding my own business before they settled down to their first practice ... doing something 'gophery' with my gopher job ...and the leader says "Peggi, will you join us" I stood there frozen. Literally. While a couple of my friends started to cheer me on to say yes. I couldn't figure out a graceful way of saying no without embarrassing one of the sweetest, kindest women I've ever ahd the pleasure of knowing.

It seems, that, she'd considered asking me earlier, and started to call me, and then decided to wait and ask me in person on Wednesday night. I guess, her spirit must have known that I needed to be on the spot in order to say yes. Had she asked me on email, as she wanted to do to begin with, I would have respectfully declined. Had she asked me on the phone, I would have politely declined. She, is convinced, I am supposed to be a part of this. (although, she didn't know I would have turned her down in any other situation till I emailed her later that night and told her so.)

I can hit every note, I have the music almost memorized. It's not like the tenor part I was singing last year, where I couldn't HEAR my part ... and so I didn't know the music. Where, I if I couldn't hear the person singing next to me I didn't know what I was to be singing. I know my part ...mostly. On one song tonight, I was the only soprano there, all of the other ones were late ...and I even sang the part myself, alone, and held it ...and sang it! (to quote Miss Moof) *cough*

But I am one of sixteen singers ... one of five soprano's ... and their voices are so beautiful, so strong ...so WONDERFUL ... and mine .. is so ... just not up to snuff. I was scared enough, and then found out we're going to have individual mics ...ARGH!!!

I'd rather be signing. I haven't sang in a group this small since I was a teenager!!! I hope my mom enjoys it. It is beautiful Easter music.

I had the occassion tonight to remember just how far my children have come. I still worry about their disorders and how it will effect their lives ... but there was a time that that worry consumed my prayers for them.

When Benjamin was little, till he was about 10 years old. He could not stand to be touched. He didn't like hugs and he really didn't like to be cuddled. When he was about 4 or 5 years old, it just broke my heart. While I'd see other 4 and 5 year olds run and hug their mom's ... he'd barely kiss me on the cheek ..and I could barely hold his hand. He had to initiate the touch and he had to control the length of the touch. I just knew that children, like it or not NEED more touch than that.
But, to force the touch, caused so much more anxiety than he could deal with in his life.

So, after he was asleep. Sound asleep, I'd go in and touch his hand and when he didn't stir from that, I'd pick him up. I'd hold him and rock him and I'd sing to him and pray over him. Sometimes as much as an hour. Night after night I'd go in there and hold my baby boy. I did it until I could no longer pick him up. (He was pretty big before I gave up on it too!) Then, I'd go in and hold his hand, and stroke his head ...and sing ...and pray ... please God ... help my baby boy.

He got into some therapy ... he'd been diagnosed as Pervasive Developmental Disorder -NOS and was suggested we go to Occupational therapy to deal with the sensory issues that often go along with PDD-NOS (a type of autism). As we started to work with the Occupational therapist ... Benjamin started to bloom ... in a way that was incredible. It was exciting for us as his parents ..and for the therapists. It was also exciting for the doctor's as they realized that for all the information they'd had in front of them ... they'd been wrong. Benjamin had not been Autistic, he'd simply been SEVERELY effected by Sensory Integration Dysfunction. As the sensory issues came under some kind of control ...his social skills bloomed.

With the continued therapy we knew we were dealing with a processing disorder, OCD, Tourette's syndrome rather than autism.

The anxiety levels were still there, but managable. He could handle being touched ..and hugged. Not cuddled, but hugged.

About the time that Benjamin came out of his social box ...
Samuel, my oldest son's OCD went into high gear. I could see fear
controlling almost every aspect of his life. He couldn't function if he didn't have
answers, he couldn't move forward if he didn't make the right steps, if he
didn't say something right he had to repeat it (and heaven forbid you try to
tell him to go on!). The anxiety levels would build to the point that you'd
have thought the world was coming to an end. The fear in his eyes was real, and
palpable to those around him. It was heartbreaking and I couldn't imagine
trying to exist in his body.


A song came on the radio, I couldn't hear it without praying it over my children. The song was meant about parents dealing with a child with Cancer ...but for me ... it was about my children and their lives not being what others are ... the first verse was about Benjamin, the second was Samuel ... and the chorus and tag were a prayer to God ... please God ..these aren't just any boys ...they're my sons!



He's My Son
by Mark Schulz

I'm down on my knees again tonight
I'm hoping this prayer will turn out right
See there is a boy that needs Your help
I've done all that I can do myself
His mother is tired
I'm sure You can understnad
Each night as he sleeps
She goes in to hold his hand
And she tries not to cry
As the tears fill her eyes

CHORUS:
Can You hear me?
Am I getting through tonight?
Can You see him?
Can You make him feel all right?
If You can hear me
Let me take his place somehow
See, he's not just anyone
He's my son

Sometimes late at night I watch him sleep
I dream of the boy he'd like to be
I try to be strong and see him through
But God who he needs right now is You
Let him grow old
Live life without this fear
What would I be
Living without him here
He's so tired and he's scared
Let him know that You're there

CHORUS

Can You hear me?
Can You see him?
Please don't leave him
He's my son

***************************************************************************

This week, I took Benjamin to the neurologist. His medications were cut down, again.
He's on so little now. Half a pill for the tourette's, half for the seizures. None for the OCD ... amazing ... simply amazing.

Samuel will be taken off his TS medicine this summer to see how it goes, leaving only his OCD medicine.

Incredible ... how far we've come in the years since I prayed that song with tears in my eyes ... and a catch in my voice. He's answering my prayers ... I'm seeing young men grow up in front of me ... who deal with life with courage and grace and dignity ... and who have fears and put them in their place. It's a good thing.

The Trees are Budding ... The Flowers are Blooming

ACHOO!!!!!!!

I went to fill my Zyrtec today. Walidiots said that I hadn't filled it since August. Yea, ok, so the bottle that I was holding that said February ... was from ... Wonderland's Walgreen's? I was out of refills and needed Dr. Authorizations anyway, so it wasn't worth arguing over.

I've GOT to change!!! (Yea, I know, I've been complaining for a long time, but I was really hoping moving to this new Walgreens was going to make a difference, I was REALLY hoping it was THAT pharmacy problem not a corporation issue. Having the drive through when I don't feel good, is a REAL benifit!!!!)

My husband bought me an incredible gift this weekend. A porch swing. Yep. A Two seater, sit on the porch holding hands and talking in the evening swaying back and forth in the evening air on our nice porch ...with our beautiful house with our wonderful family ...and our fairy tale world .. porch swing. It's too good to be true. Only, it is true. :)

I was looking at the pictures of our house from the building process today ... the windows the teens and our children's pastor helped to put in, and put the siding around ...and the porch railing that we painted. The walls we painted. The roof the kids worked so hard on, in the extremely hot heat. The flowers we planted in the shivering cold. It's incredible to have this place that isn't just a home, it is a place of memories and a place that love literally built. Such an honor to get to live in it. I'll never forget the people who helped build it, they are a part of my home. They are a part of my heart.

Don and I went out to eat in a new restaurant tonight. New to town. It was strange ... I've never wanted to be a food reviewer so badly in my life. Some of the food was REALLY good. Some of it was sadly lacking and the prices were much too high for what kind of a place they were. They had way too many things on the menu for the size of a resteraunt that they were ... there is no way they could serve that many items in a day ...in a week! Therefore ...their food costs are going to be too high ...and thus ..the high prices. HUGE menu, small seating area (former Taco Bell) and what they specialize in, was really good, and what they make because they felt they had to offer, was mediocre at best. Not ..a good combination. 7 page menu ...FULL menu ... just is too much when you are that small. In short, we felt like we got short changed. Their dinner rolls, almost made it worth being short changed.

We got home, and we sat on the porch swing. And we talked about what an incredible life we have. Then it got too cold ... we came inside the house.

I can't wait till it warms up enough for us to stay out there longer. Hopefully by then I'll have more Zyrtec so I will be able to tolerate the outside a bit more ACHOO!!!!

treasures

I heard once "We know the miracles went out with the last apostle."

I am so glad that I don't believe that. I about fell over when I heard the person say that. Personally, I would have thought that the person saying that had seen too many miracles himself. But, oh well.

In the last 24 hours, I've gotten to see God's handiwork. First, I got an email from my friend who's baby has the ATRT tumor.

Hi everyone,

Just wanted to let you all know that Kylie has done wonderful since we've been home. She is trying to walk again (with assistance), she's climbing on furniture, crawling, talking, exc.! We are still trying to get her into a proton radiation program. She was turned down to go to M.D. Anderson in Houston. So now we are working with Loma Linda hospital in C.A. Hopefully we will have an answer later this week. I hope all is well with all of you! Thank you for your thoughts and prayers.

God Bless,
Teresa

She hasn't won the battle yet. But, she hasn't lost it yet either. After more surgeries than I can count. Almost loosing an eye, and chemotherapy, stem cell (her own) transplants that almost took her life because of the side effects, this little girl ... is walking again. She's 2 years and 2 months old ... and she's winning an unbeatable cancer!

Tonight, I went to church. Our children's pastor was there. She'd had a really tough battle with infertility. We'd prayed ..and we'd prayed. She'd gone through an awful lot and just when she said "Ok God, your will, not mine" Literally, the next day ...she found out that she was pregnant. Her little girl will be 2 in July. I'd stopped to say hi to her Mamma. As I walked away, her little girl got fussy and called out for me. To have a child who you prayed for .. to have the voice of a baby that you begged God for call your name out and play with you ..smile at you ..is a priceless treasure. 5 years we prayed for that little girl!

Worship team started and in came one of our worship leaders who'd been out. She'd gone through all the infertility with our children's pastor. Only, she started BEFORE the children's pastor ..and it continued long after our children's pastor ended. Many a worship practice time was spent with our hearts and hands on this dear woman who only wanted to be a Mommy to a child ... to teach a child to love God. She really didn't care how that happened. She didn't care ..she just wanted to hold a baby ...and to love a baby. Her arms felt so empty. For as long as I'd known this woman, she'd been trying. During our prayer musical last year, I could see it, in the middle of our singing ...it was tearing her apart. We had a chance to pray for each other DURING the musical. I grabbed her. We prayed together. Shortly after, someone had offered them some donated eggs. It was going to be their LAST shot at pregnancy. They were already going down the adoption route. But, with donated eggs, they'd go ahead and try ...just one more time.

They went to the doctor to get cleared for the donated eggs ...and she couldn't get cleared.




She was pregnant. No implants ...not IVF ... no doctor's ...no medical intervention. Just Love and prayers. And a God that's bigger than we can all imagine.

So a month ago ... her baby boy was born. Cute as a button. Precious and sweet. A good baby, peaceful and calm. I got to hold him tonight. As I held him, I told him just how much he'd been waited for. I told him that I hoped that he always knew just how much we couldn't wait to see him.


I know, before we know it, he's going to be crawling around ..the bouncing off the walls ...and calling my name out ... just like the little girl I prayed for a couple of years ago ... and then ... like mine ... they're going to be getting ready to grow up and be adults ...

What I do know about all 3 of these babies ... healthy or not ...they are deeply loved ..and treasured ...and they will forever be covered in prayers and no one will ever doubt just how much they are valued.

That's Entertainment!

I seem to be offering entertainment, of sorts, to my medical care team.

Last week, I failed to remember significant medical history of my OWN ... which highly amused my doctor. This week ... geesh I can't believe I did this ... I just didn't show up for an appointment.

I had an appointment with my neurologist first thing this morning. I'm driving away ... and I look up. I see, in the window, my orthopedic surgeon standing in the window and I think "hey! There is Dr. H! I see him tomorrow, right about this time!"

I go to the grocery store, then go to a coffee shop to wait for my husband to meet him.

The waitress, a long time friend is quitting on Wednesday, so she wants our phone numbers. I was digging for a piece of paper and I come across an appointment card. 3/12/07 8:50 Dr. H.

3/12/07 ... that's today. Not 3/13/07 ... Tuesday ...tomorrow. 3/12/07 ..8:50 ...that's today .. 8:50 was the time I was driving through the parking lot looking up at Dr. H ... EXACTLY at 8:50 ... going "Hey! I see him tomorrow!" GEESH!!!

So, I called the doctor's office and said "I'm an idiot"

Thankfully, they'd had computer screw ups, he'd had an emergency and they were trying to figure out how they were going to fit their morning in as it was. A missed appointment, for once was a relief, rather than a problem. I'm sure the record people who had to pull my chart for nothing didn't appreciate it.

She got a laugh, and she said she needed the laugh. At least they're not charging me for the missed appointment.

I guess it pays to be a faithfully on time, regular, dependable patient. They know I wouldn't have just done this for the fun of it.

I go back in 2 weeks on Wednesday the 28th ... I verified the appointment 3 times while I was writing it. Duh.

In the neuro's office. It was such an interesting appointment. We talked about where I was and where I am. "Semi remitted" whatever that means *grin* he kind of backpedalled when I started to get a bit hyper over it.
ok ... I get it .. I still need my medications, I still need my time management and I still have to take precautions with medications that I take. BUT ...Myasthenia Gravis does not interfere with day to day management of my life. It doesn't interfere with everything I do or say like it did at one time in my life. This, is a good thing. An extremely good thing!!! I get it! I really do. He evidently realized I got it, because I don't have to see him for a YEAR!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Now ... if only we could get the lupus as under control as the MG ... I'd be feeling groovy ... however, the lupus does interfere with just about everything. Blah!
Still, given the choice between lupus interference and MG interference ... I'll take what I've got.

He did let me know that lasix wasn't a good idea for me. So, if I need it again, I guess I need to have them call him. He said there were all kinds of things that need to be done first. Something about some kind of lymph something therapy (squeezing the lyph nodes?), pressure hose and some other stuff that went right over my head. Especially if the exact cause isn't known. He really wasn't impressed with the severity of the edema ...to start with lasix he wasn't thrilled with. I told him I wouldn't take anymore. (I've only taken 1 and 1/4 tablets ... I took 1/4 tablet yesterday to see if I could flush the rest of it out) It did make me awfully sick.


And a side note ..this won't make any sense to anyone but the person reading it. E/O, if you read this. Stop ...don't email me, don't contact me. I told you to stop, I mean it. I cannot and will not absolve you. You were wrong. So wrong. You won't find absolution in an email, on my blog or in any way shape or form. You want me to tell you it was ok so that you can prove to your friends that it wasn't. It was. It was horribly terribly wrong. You're barking up the wrong tree. Go away.

Ironic Fortune Cookie

My Fortune Cookie told me: People are beginning to notice you. Try dressing before you leave the house. Get a cookie from Miss Fortune

I spent yesterday afternoon in the doctor's office/Oklahoma Heart office.

I went in, and she asked me a bunch of questions. I'd seen this doctor before, but my doctor is on maternity leave. (they had a picture, cute cute cute!)

She didn't seem very alarmed ..kind of ..blah ... a chronically ill patient on multiple drugs with edema ..ya? So?

I think she was expecting a little water retention one might get with a monthly cycle.

I pulled off my sandals ..and up my pant legs and her face dropped. Her demenor changed. Suddenly she went back to my chart and started to ask me more questions. Dizziness, nausea, chest pain, sweating ... I can't even remember what all.

then as she had me climb onto the table to examine me, she asked me about family history of blood clots. My mind started to work.
I couldn't think.
Who is it that had the blood clot?
Whas it Grandma B?
Was it Grandma P?
Was it one of my Aunts or uncles? I know it wasn't a parent! Someone, important close to me had a blood clot. I should know this.

I shrugged and said I couldn't think of someone, maybe one of my grandmothers?

Then as she started to touch my foot it hit me ...
"um, Dr. G, I had a blood clot, once"

DUH!!!! DERK !!! DORK !!!!

You'd have thought she touched a hot stove by the way she jerked her hands away. Ok, give up the history! Why isn't in the chart? (I don't have the answer to that one)

It wasn't in my legs, and it wasn't just a clot for clot sake ... I'd had a port that clotted off ...big time ... my whole arm got swollen and purple and and I spent 13 days in the hospital while they tried to thin out my blood with heperin (this should just take 2 days .... 2 weeks later ... I finally got out, fun experience). I spent a year on coumadin fighting the clot/clots in the port. I threw some to my fingers ... and then they took the port out.

Not exactly the same thing ...but ..since it clotted less than 24 hours after it's insertion ... it kind of ...well ... is a necessary something a doctor asking about clots needs to know.

duh

So, after she got over the shock of my revelation, she was ready to check the edema again. She was obviously worried. Deep pitting. She said that she could make caverns in my legs. I thought the left leg was worse, she thought the right leg was worse. (Left leg is bigger, right leg she could make deeper caverns in)

So, she decided to go ahead and do a venous study on both legs. I didn't think anything of it, I've had a zillion ultrasounds.

Um ..er ... YEOUCH!!!!!!!!!YEOUCH!!!!!!! Crud those hurt!

Anyway ... a little while after I got home, I got a call from the doctor's office. Take lasix, keep feet up, and drink water. Follow up in 2 weeks. (increase protien as well)

so all of that ...and it wasn't anything they can tell ... well good!

It's been a strange weekend. I've realized that my fear of stepping out to deal with the publicity and promotion of my book ...has pushed me into my shell ...farther than I've ever pulled in before. It's safe to say, I think depression has set in. It's weird. Circumstances have never been better. I wouldn't change a thing in my life (except, maybe go back and not write the book) and my inner turmoil has never been louder.

The discussion of maybe I thrive on chaos came up when things started to settle down and my emotions went haywire. As my life became even more settled, and my relief of the settling of the circumsances started to grow, and I started to breathe that I might be able to have a week without a crisis ...and then 2 weeks ...and then three ... it became agreed on. I don't thrive on chaos. Usually those who do ... when things settle down, manage to create chaos of their own. I'm definitely not doing that and enjoying the peace that comes with a peaceful lifestyle.

So, the next theory on the shelf, I think I liked less. There was so much in my past that I'd refused to deal with. That I'd stuffed down with the eating disorder ... or ..forced to put on the back burner to deal with sick kids, body falling apart or housing. I didn't have the bare necessities of security ...so the emotions ... could stay in control.

Now, I'm safe, and I'm secure ...and the past is insisting on being reckoned with. What it's done to me, is insisting on being reckoned with. My emotions feel like this volcano inside. Errupting with hot and fearful force. It was more than I could deal with. I didn't want to deal with it. So, I guess, my head decided it was time to shut down.

Sit here in my nice cozy house, with my wonderful family. I don't go anywhere but church and doctor appointments and I spend an abnormal amount of time sleeping. I don't even go to the blogs I used to visit, or talk to those that I used to. I've kept up with a few blogs ...pretty much the ones that are informative, rather than personal. If your blog was personal in nature, you've likely been one that I've been not visiting quite as often ...or at all.

How bad is it when you withdraw not only from the outside world, but withdraw from your cyberworld as well? hmmmm

So, for those of you who are wondering if I fell off the planet ...or if you offended me or chased me off ...no, you didn't ...not at all ... I guess I just decided that I wanted the world to stop for a while. (Stop the world I want to get off!)

I did an online Wakefield Depression scale. I'd not heard of it before. But it said that if you have a 15 to seek help. I got a 36. Well, good.

So, at some point, I'm going to have to pull myself out of this funk, somehow. I'm on enough meds to not be this way. It's fear that's put me here ... I don't think medications are going to get me out of here. I am afraid that facing it ...is all that's going to work.

I have to go to the primary care doc today. My legs and feet are swollen. Like sausages. My feet feel like someone is pulling a nerve in them when I walk the skin is so tight. I can't get shoes on.
Edema, isn't normal for me. It's happened, but it's not normal.

joy oh joy.