Dr. Suess

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

Saturday, March 31, 2007

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?

Wednesday, March 28, 2007

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.

Thursday, March 22, 2007

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

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


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.

Tuesday, March 20, 2007

The Trees are Budding ... The Flowers are Blooming


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!!!!

Wednesday, March 14, 2007


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,

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.

Monday, March 12, 2007

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.

Tuesday, March 06, 2007

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.


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!

Monday, March 05, 2007

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.