Tuesday, December 21, 2010
To ME ..remission is 100% symptom free without the aid of medication
To ME partial remission is 100% symptom free with the aid of medication.
Active disease on a regular basis is not remission.
Dramatic improvement to have full days ... even several days a week ...without symptoms ...
But as long as I'm having a couple of days a week where symptoms exist, I'm not sure I consider that a partial remission ...
but not remission
My neurologist, today, used the phrase 'partial remission' to describe my current state.
He emphasized the word 'partial'
When I said I still have symptoms, most days, although certainly not every day and the fatigue I deal with is more of a lupus fatigue than MG fatigue (yes, they are distinctly different and I have made enough progress to know the difference)
he responded with "yes, but unless you take a dangerous medication, ignore an infection or run yourself into the ground, you're not in danger of myasthenic crisis any longer. You don't have to worry about crisis coming up to bite you on the ass as it's done in the past."
he had a medical student with him and I chose to not remind him that most of my crisis' came on the heels of dramatic/fast weight loss due to severe restrictive behavior related to my eating disorder ...
I guess what I'm trying to decide is ... is this a difference of perspective? A difference of opinion? Is it medically significant?
He recognizes that I have symptoms on a regular basis and still need medication.
He recognizes that things are still difficult
He emphasized the word partial
He emphasized that my own behavior controls much of the symptoms (and oddly enough, it does. I do not have symptoms on days I don't do much unless I'm not doing much because I'm in a flare)
He made it clear that he knows it is medication related and therefore I need to be medically treated as if the disease were 'active'.
So, does it matter, in the long run, if I think partial remission is symptom free and he thinks it's well controlled?
Thursday, December 09, 2010
I felt the entire semester like I was caving under the stress ... and managed to pull out A's ... Sensory and Perception (one I had no idea what I was getting because he'd not returned 2 tests!) I got 913 out of 900
Abnormal Psych I got 609 out of 600
and Intro to Counseling I got 298 out of 300
Thank Goodness for Extra Credit!!
Extra Credit made a lot of difference and had i not gotten full credit on my big paper or my portfolio, I'd have been skimping the edge of the 90% range
I still don't know about algebra ... sigh.
Saturday, November 06, 2010
6 years and a few days ago, I began my blogging journey. Soon after I found Grand Rounds and there I met a host of people ... many of which I'm still in contact with on a regular basis, others less often and some, I've lost contact all together.
Family have found my blog, friends have found my blog and an occassional friend or two has started their own blogs.
When I started, I had the intent of blogging primarily health issue, maybe eating disorder issues. It very soon turned into a general life issue.
I've blogged about lupus, about myasthenia gravis, about eating disorders, insulin resistantce, hospitalizations, surgeries, working for the opportunity to build a house through habitat for humanity, BUILDING said house through Habitat forHumanity, IEP struggles, homeschool problems, joys of parenting, pains of parenting, life chaos, life joy. I've poste pictures and poetry, failures and successes, depression and elation.
I've posted through my husbands brush with death,
my son's learning about life.
I've posted about going back to school.
I've posted much (but not all) of my life over the last 6 years. I'm not sure where it will lead or how long I will continue ... but for now it's here and it's been a great time, and an honor. Thank you to each and everyone who has read , commented and prayed.
Friday, October 22, 2010
struggling to gain knowlege/skills in an area that I've always struggled with while watching students younger than my youngest is not fun and plays havok with my emotions.
Struggling to understand what comes so easily for others ... plays havok with my emotions
Remembering being given a list of facts to study for a test and reading it a couple of times and acing the test while I have to crack the books now, and actually STUDY to learn and understand because memorization is not going to happen like it did when I was a kid ... plays havok with my emotions.
Having a hot flash in the middle of algebra ...plays havok with my desire to not make a fool of myself. (this happened on Monday!)
Understanding concepts that seem foreign (and unfathomable) to my peers because they cannot imagine ever making the choices I've made or choices those we're studying have made ... boosts my self esteem.
Understanding that this will allow me to change my reality once I finally get those coveted letters behind my name is priceless and keeps me focused.
Knowing this is not an exercise in futility as some of my classmates fear ... is priceless.
Knowing it's improving who I am as
a citizen of Oklahoma
a citizen of the United States
Being unsure of how this will all play out in the grand scheme of things .. a bit disconcerting.
Being unsure, at times, that physically this will work .. a bit disconcerting.
Being sure that I have no choice but to proceed because the what if's would haunt me forever ...comforting.
Monday, October 11, 2010
It's been a long several weeks.
We've had many concerns for the present and his future.
We've made some choices that others will not agree with, but ...we have to do what we feel is best. The scary thing is, on more than one occassion those choices did not turn out to be the best. But, I can only go with what I have now when making the choice.
Front and center in my mind is the choice to hold him back after kindergarten. The idea was that he'd have an extra year to learn the academics and mature. The maturity came, but the academics did not, and because he'd been held back, while the deficits between his age and his ability were strong, the deficits between GRADE and ability were not as strong. So, the district being who they are did not give him an IEP (without a court order) until 2nd grade.
Their idea of 'early intervention' is IEP by the 3rd grade ... that's not early ... when they qualify at age 3.
He's struggled for his entire life. He's been behind the 8 ball, so to speak from the moment he was born.
Our choices now seem to be the lesser of the evils, but by no means, a good choice!
I'm sure I post more later, but for now, those choices will remain private.
As far as me and the difficult class ...we're still on the eye. For 8 weeks, we've been on the eye and vision and at least one more week to go ... I'm ready for some other senses to study!
Friday, October 01, 2010
So, I get up at 6:30 to go to the Beginning Algebra class my instructor invited me to. I go to the 8 am class, come home and spend the day studying for tonight’s test. The information is dense, the topic is difficult and communication lacking with the professor.
Nothing with the referral has changed and my schedule seems impossible to keep up. Doubts about my physical ability to get through this process were creeping in …
Doubts about my ability to provide what my son needs were starting to overwhelm.
Doubts … doubts … and fear.
I drive to school and I tell God I cannot take yet another stress and have got to have some of the stressors removed.
I’m sitting in the middle of the test about ganglion retinal cells, LGN and parvocellular and it’s functions and a tune pops into my head … la lalala la la la…
A few more questions and the tune persists …
La lalalallalla …
As I look at the essay questions sure I do not know the answer for any of them I started to struggle to breathe …fighting the tears and the words
“you cannot loose my love” to the tune going through my head …
I finish the test, I go out to my car and turn on the CD in the car, the song playing finishes and the next song starts
You will loose your baby teeth, at times you’ll lose your faith in me. You will lose a lot of things, but you cannot loose my love.
I sit there for a few minutes, taking breathes that I’d not breathed in several weeks, if not since the day Benjamin got sick … feeling it go from my nose to my throat ..to my chest and into my abdomen …
I realize that I’d let stress take the place of my faith. I’d let my choices for coping loom as an option …
“you may lose your appetite, your guiding sense of wrong or right”
I’d let what I’d experienced replace what I knew to be true …
“You may lose your will to fight, but you cannot lose my love”
Something happened this time … nothing kicked in my fight mode, I was left feeling worn down, tired and helpless … When there is a fight, I know what to do. I know what steps to take. I know what the enemy is and where it is and how to fight it. But with this … this was just a reminder of all I was not, could not do and how helpless I was.
“you will loose your confidence, in times of trial your common sense”
I was putting all my eggs, all my sons eggs, into one basket, and the responsibility for the protection of those eggs were all on me. They weren’t God’s or my husbands … they were all up to me and I was seeing them flying through the air and being smashed in a gooey mess on the ground.
You may lose your innocence,
But you cannot lose my love.
I cannot lose His love … and the breathe reached my toes. I could feel the peace flooding over me, with each inhale and protection of my God with each exhale …
Many things can be misplaced;
Your very memories be erased.
I’d forgotten, briefly …what I believed. I put my faith for my child in my hands. I forgot that HE is my source of strength, not me.
No matter what the time or space,
You cannot lose my love.
You cannot lose,
You cannot lose,
You cannot lose my love.
One way or another, it will be ok. My son will be ok. I will be ok ..no matter the outcome … we will be ok. Not because I’ve done all the right things or never made a misstep ..but because my faith is in the one who made me … he’s been here with me each and every moment, waiting for the moment I turn to Him and let Him breathe in me.
You Cannot Lose My Love
By Sara Groves
You will lose your baby teeth.
At times, you'll lose your faith in me.
You will lose a lot of things,
But you cannot lose my love.
You may lose your appetite,
Your guiding sense of wrong and right.
You may lose your will to fight,
But you cannot lose my love.
You will lose your confidence.
In times of trial, your common sense.
You may lose your innocence,
But you cannot lose my love.
Many things can be misplaced;
Your very memories be erased.
No matter what the time or space,
You cannot lose my love.
You cannot lose,
You cannot lose,
You cannot lose my love.
so, nothing has changed ... no choice was made easier ... no new solution that was more palatable ... no sudden understanding of concepts that were wrapping me up in fear ... nothing changed except my focus.
Sunday, September 26, 2010
A Diner opens it’s doors
and stays open day and night.
They feed food to all,
and coffee where conversation was bright.
The customer’s are loyal.
Morning, noon, night and even when the world is alseep.
The food is decent,
Conversation is better, laughter and even times to weep.
A small family forms,
We watch the others, to laugh, to cry, even to poke fun.
The door that lets them in,
Strong ‘unbreakable’ glass
(as all resteraunt doors should be!)
This door is the key to the fellowship,
It lets people in and keeps out the weather,
It allows the last wave
Till we can once again be together.
The winter wind freezes it
The summer heat bakes it
The spring and fall winds blow it
And it stands strong.
A drunk, or 2 or 10 or more
Tumble into it. A toddler bangs it’s cup on it.
A strong door, the entry to the place where
We all share our lives … and loves .. and disapppointment.
One day, a young 6 year old boy
His 8 year old brother tuants.
And the 6 year old boy goes to the parking lot
Picks up a pebble, the size of a pencil eraser
And he, in his anger … chuncks with all his might
This tiny pebble at his brother’s head
And the door shatters
What once protected from the elements
What once allowed hello’s and good byes
Was now a pile of junk on the floor ..
The unbreakable …
No. It shattered.
My heart felt that way …
Letting people in and out.
Sometimes baking in the heat of
Pain that comes only from hell
Abused at times
But functional … and secure and unbreakable
But someone threw a pebble
With just the right force
With just the right ambient temperature
With just the right spot on the vunerability of my soul
And now I’m
In pieces a shocking pile of broken unbreakables
And unable to fix myself.
Friday, September 10, 2010
I've already seen a comment on twitter that it is 'just another day' the implication being that it's akin to "draw a flower day" (a silly day made up for purposes of this post)
The reality is ... for people like me .. we wish that this day had existed when suicide hit our family. We wish that more people understood the implications of suicide. We wish that things were different than they are.
I've blogged about my step dad on many occassions. If you've read this blog for any amount of time, you know that my step dad was my "Daddy". You know that the bond between him and I was stronger than any blood tie. You know that my world revolved around him.
He was 1 of 2 people in my life who I *knew* gave me unconditional love. (the other being my step mother)
When my world collided with suicide, I learned my world would never be the same.
One of my memories from childhood, well, several of my memories from childhood but I'll focus on this one, is of me coming home from school after a day of being bullied.
Dad was in the garden, so I changed clothes and went out to help him, something I did more often than not. I walked out to the garden and went to what was 'my' radishes. I bent down and started to pull the weeds out.
As I progressed, I realized tears were falling down my face. I wiped them away ... and my face became not only tear stained, but mud stained as well.
Daddy called me to the end of the radish row and then gave me a hug. He just stood there and let me cry. When I stopped crying, he pulled back a bit and sat down. I sat in his lap ...out there in the garden with all those plants that he and I tended to so carefully. The weed piles here and there ...ugly reminders that no matter how beautiful something is, there is something waiting to crowd it out if it's not carefully tended to.
He looked me straight in the eye and without blinking said "Darling, what is wrong?" Darling .. a word he used sparingly ... it meant "I'm focused on you, and only you. You, for this moment in time are the center of my world" (I was an adult before I realized that)
I told him about that days bullying episode. I still remember it, but it's not germaine to this story.
As I told him, the saddness on his face became apparent. When I finished, he hugged me again. He told me how sorry he was, and that he knew that his love didn't change the insults hurled at me by children who were my peers. But that his love was forever ...and their insults would fade ..some day. He was right. I still feel his love, but the insults ... they stay in the back of my mind, in a box ... where they belong. I no longer feel the impact of those insults.
When I was 14, his depression crowded out the love that we, as a family, had for him. His great tenderness ...the thing that made him such a wonderful father ... is the same thing that allowed him to feel the depression to such great depths. In his depression, he felt that we would be better off without him. He was oh so wrong. To this day, there are things that I wish I could tell him. Things I NEED him to do for me. Things I wish I could share with him. Not a day in my life has gone by that I haven't wished for a hug from him.
If you're considering suicide ... please know, that no matter how desperate you're feeling, no matter how alone, no matter how much you think that those around you would be better off ... they won't be. There will be a hole that nothing can fill in your absence. The world would NOT be better off without you. The pain and chaos left behind can only be prevented by your continuing presence in this world. Reach out. Accept the love offered. Let those reaching to you reach you.
No one exists in a vaccum. You matter ... to someone ... to me.
(the link is a poem I wrote to my Daddy on the 25th anniversary of his death)
Thursday, September 02, 2010
My parenting has entered a new phase.
My marriage has entered a new phase.
My oldest son has left the nest. For those that have been reading my blog for years, you may be wondering how he got old enough to do such a thing? Apparently the same way I got to be the age I am .. one day at a time.
I'm, to be honest, ready. Maybe the key is that he brought his best friend to live with us 8 months ago, and then 4 months ago, Benjamin's best friend came to live with us. Maybe the key to being ready for your child to leave is them bringing home extra's .. to LIVE.
I was ready to have my bathroom back.
Ready to know how many I was cooking for. (who will be here? None of us, we've got ABC to do. Cook for 3, and they come home and say "where's dinner?" Or : who will be here? All of us, we're all off. Cook for 6 and 5 minutes before dinner was done ... they go trampsing out the door "oh, we decided to go get Buffalo Wings" ARGH!! that, was truly mind boggling, and aggrivating ..not to mention felt quite disrespectful at times)
I was ready to have my driveway back ...yes, my driveway. It is a 3 car driveway .. but all in length .. it's 1 car wide, 3 cars long. So if it rained, someone would have to move car so that I could get out, or I'd have to move car so they could get out.
Ready to know who was in my house at any given time.
I was ready to not have to worry about the washing machine and who had stuff in there when I needed it.
Ready to have some sense of privacy back.
I was ready for my youngest son to not have the intellectual competition around all the time. My sons friends are every bit as smart as Samuel ... my husband and I are not exactly lacking in the area of intelligence and that, is a lot, of intelligence in my son's face at all times. I was watching him feel like he had something to prove ... he has to face that at school, is it really fair to have to face it at home? He was becoming increasingly frustrated and his need to PROVE was increasing as the days went on. He is ready to not have to be anything but who he is, at least at home where it's always been safe to be so.
I have the normal concerns "will he be ok?"
Will he call ? Will he forget that he has a family? Will he behave? Will he act in a way that is not in keeping with the way he was raised? Will he get evicted for one reason or another? Will he pay his bills? Will he wind up right back in our house?
We've told him that we're proud of him (we are) and that we're excited for him ... but he needs to come back and call ..do not turn me into a "stalker mom" from a "soccer mom" who has to stalk her child to get a glimpse of what was once a huge part of her day ... and will always be a huge part of her heart.
We're proud of the choices he's making. They are smart ...but more importantly, they are wise.
We're proud of the friends he's chosen. We love them. The 2 that lived here, long before they lived here, had become known as son #3 and son # 4.
We're proud of who he is as a person but we're ready (more me than Don) for them to LAUNCH!
A week ago this morning, I didn't know they were moving out. Today, they are waking up in their own apartment.
And we have gone from 4 to 5 to 6 ... and then there were 3. *smile*
Saturday, August 21, 2010
Thursday, August 19, 2010
I went off to my appt, waited to be called back, and they put that gel on my belly. The baby had lots of movement and the doctor squealed in delight when the baby decided that it would, in fact, reveal that it was more than just an 'it'.
I'd always dreamed of little girls. Bows in the hair, frilly dresses, Mary Jane shoes, or sharp white patent leather that goes clickity click click with Mamma's heels but at twice the speed.
I'd dreamed of girl scout camp outs with my daughter. I dreamed of throwing her her first slumber party. I dreamed of that first boy talk ...and the second and the third. I dreamed of dressing her up for the prom, I dreamed ...
The toddler girl dressing up in mamma's clothes, and lipstick smeared across the face. The pretty little plaid dress with black patent leathers for that first day of school.
Easter Bonnets and Easter dresses.
Baking cookies on a rainy day ...
This ...was my dream of parenting.
Quiet nights cuddled up reading Ramona the Pest, or Pippi Longstockings, sharing things like The Little House on the Prairie ..both books and TV.
Dressing her up for her prom ... watching her go off to college ... helping her plan her wedding and watching her dance her first dance as a married woman ...
These were the things I dreamed about when I thought of parenting.
I sat there with my mind like a whirling dervish and the doctor asked me if I had a preference. With tears in my eyes, I said "I'm terrible, but I WANT A GIRL"
She asked me if we'd had names picked out. "For a girl yes, we'd not agreed on the boy."
She smiled "Meet Jessica Eagler. Miss Jessica, we'll get to hold you in about 20 weeks"
I was 20 weeks along and my dreams of being a mother were coming true.
The doctor said she had a few concerns but didn't want me to worry. Take it easy, I could still work, but don't lift too much and don't do the walking in addition to working ... it was take my walks or work ..but not both in one day. Nothing heavier than a gallon of milk.
I went to work Thursday night at 10 pm. I reminded my co workers no bus tubs, but if I could help them to make up for it let me know.
The bar run had just finished. It was funny, There was less hitting on me now that I was showing, but the tips had almost doubled. I sat down to take a break, and evidently went white as a ghost. I told my boss I needed to go home ... NOW.
He let me go only I didn't go home, I drove myself to the hospital. They never asked about my marital status, they didn't ask if my parents were around, or family around .... did I have a friend they could call.
I was an invisible single, teenage pregnant teen as far as they were concerned, what was happening did not matter. I over heard the nurse say "We've got a late miscarriage happening. A teenager, here alone. "
The doctor came in and I said "I heard the nurse, I am NOT a teenager ... I was born in 1964 and am 23 years old. I'm married and was so when I got pregnant"
The doctor just said we have your age as 16 ... whoever wrote that is wrong! I actually, in the middle of a miscarriage had to pull of my drivers license.
At that point, a new nurse came in. This time, they took a history, a full history. Before they could complete it, I felt a sharp pain and doubled over and there was a gush that I'd not expected, but it sent the medical team into high gear. I've never asked if it was blood or amniotic fluid.
They gave me something in my IV, I assume it was versed. As I drifted off, I heard "Damn! this was a planned pregnancy, not a teenage mom!"
I woke up a few hours later. A doctor, nicer than the ones that I'd first dealt with came and sat down next to me. They told me that since I was 20 weeks along, the state would require a funeral, so to 'save me that' they put 19 1/2 weeks on the paper work. That difference made the difference between a miscarriage and a still birth. The problem had been an unusual one. My body was not built to have a baby, it essentially had smothered this baby and had not given it enough room to grow. They explained it to me in terms that I could not understand, using words I'd never heard before ..and I was still coming of what I assume to be versed. What I did hear and understand was "you will never be able to carry a baby to full term."
Not once during all this time had they offered to call anyone for me. I finally asked them to call my husband, then remembered we had no phone. So they called my mom. By the time she got there, I was standing outside the hospital, waiting.
That was 22 years ago today. My heart still wonders about Jessica.
Would she have my mousy brown hair or Don's dark curly. Would she be musical and drama oriented like me, or a math geek like Don? Would she have been popular, would she have struggled. What was my Jessica meant to be.
It took me a long time to get to the point where I didn't just zone out and let this week pass without consciousness. Last year, was the first time I celebrated her place in my life and heart.
This year, I wanted to honor her by telling her story. Recently it has been told to me that stories heal ... telling our stories heal ourselves and they heal others
Jessica Dawn Eagler ... you are forever loved.
Saturday, August 07, 2010
Friday, July 16, 2010
A lot went on, I'll just hit the highlights of the meditative ending. As I was laying there and I contemplated all she'd said during the class (different instructor, the studio owner) ... about body image and acceptance ..about ability ..about pushing to the limit, but not beyond .. etc
It struck me how much Yoga is like Phillipians 4.
Accept where you are .. how you are ..
Phillipeans 4:11 I am not saying this because I am in need, for I have learned to be content whatever the circumstances. 12 I know what it is to be in need, and I know what it is to have plenty. I have learned the secret of being content in any and every situation, whether well fed or hungry, whether living in plenty or in want.
About focusing on the hear and now and what the word Namaste encompases
7 And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus. 8 Finally, brothers, whatever is true, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable--if anything is excellent or praiseworthy--think about such things
About Being willing to push through the anxiety/fear/lack of confidence to the edge of ability
6 Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God.7 And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus
13 I can do everything through him who gives me strength.
She gave me a lot to think about.
There is more churning in my head ...
just not sure I can put it to words yet
Monday, July 12, 2010
Saturday, July 10, 2010
In the CD, there are many gems ...
"if you find a diamond in the dung, wash it off, and never forget it's a diamond"
But the one that keeps ringing in my ears
" Memories and stories are not the truth of who we are. But they can have great power over our lives. They are untruths that prevent us from knowing ourselves. They snuff out life and inhibit the unfolding of our innate potential. Repititious and immature they do not evolve in response to later life events. Instead they interpret on going life events through their filters, for example an innner theme: “ I’m not competent” may result in the need to be perfect to prove competency. Mistakes are seen as evidence of not being ok and result in ever greater pressure to get it right. Although people under the influence of a perfectionistic theme may be accomplished in their careers their ability to relax and enjoy is be inhibited by the endless pressure they do not know their innate worthiness. The thoughts and themes that make up our sense of identity are immature, they are literally interpretations of a childs thinking having arrived in our heads when we lacked the intellectual capacity to know that our conditioning is not who we are. They mirror the trauma’s events and attitudes that surrounded us in early life."
There is also the simple sentence:
We do not have to remain captive to our stories.
And then there is:
Our task is to remember that
Our Worthiness is our birthright, We are inherently worthy and precious. Just as a diamond is always a diamond.
We deserve to be here, just because we are here.
Thursday, July 08, 2010
From: Patty Kitchen
Date: Thu, Jul 8, 2010 9:48 am
ACCEPTANCE FOR FALL 2010
Congratulations on your admission and welcome to the Broken Arrow Campus of Northeastern State University. You will be receiving your printed acceptance letter by mail.
Academic Advisors work on an appointment basis only. Please call 918.449.6134 to set up your advisement appointment. We look forward to your phone call and seeing you on our campus.
Admissions & Enrollment Specialist
Northeastern State University-Broken Arrow
Wednesday, July 07, 2010
Lessons for life, things in which you’ll take part.
Life can get hard; I know it doesn’t seem so
Let me tell you the things that you should know.
When darkness comes, and trust me it will,
Remember your faith, darkness can’t kill.
When loss and terror strike out of thin air,
Keep your heart open, remember to care.
Things will happen you can’t even dream,
Not in the darkest nightmare scream.
But you’ll come out fine, stronger and bright,
You’re so young now,some day you'll need insight,
You won’t deserve to live in that cage.
You'll need help to turn the page.
Destruction will happen, by you and by others,
You need to separate, yours from another’s.
The Grace of God, you’ll depend on often,
But it will take a while for your heart to soften.
In time you’ll understand what you need,
To breathe, to love, to hear your own plea.
But for now, let’s suffice it to say,
You’ll learn very early just how to pray.
Lessons you’ll learn, you’ll stand proud,
Even when you hear the voices a crowd.
You will find peace over and over again,
Even when all around you is dim.
If I could stop it, I promise I would,
Many times you will think that I should.
Someday, maybe not too far away,
Our hearts, together again to stay.
Listen up; you’re me, thirty years ago,
This path that we walk is not just for show.
A heart that is wounded, heals even stronger,
You can bear this all, just a little bit longer.
When in the future, I forget you’re me,
Remind me together the future we see.
A young girls dreams, I do treasure them alway,
I’ll lose the path, but come back some day.
Together we’ll face this … the adult in your eyes
The child in me, no more fright in the lies.
No longer, I promise, to ignore you inside,
No more will you worry that I too have lied.
It’s time to come play with me in the sand,
Swing high, climb low, play in the band.
Time to move forward, with one heart aligned,
It’s our future that we have yet to sign.
© Peggikaye Eagler
Tuesday, June 29, 2010
Some of them are irresponsible, lackadasical and carefree.
Some are hard working, have a goal and working toward that goal, but love life, have fun with their friends and enjoy each moment of every day.
Other's are so focused on their futures that they have no time for the here and now.
Each grade, each class, each decision made, on a daily basis, impacts their future. (or so they think).
They spend their days fretting about how they are going to get there, what they are going to do when they get there, what job they will have, where they will do that job, what city they will or will not live in, who they will or will not be married to and how many kids they will or will not have.
They worry about if they will have kids, how they will balance their career with those kids and they worry about choosing a career NOW.
They spend so much time in the future that they are not experiencing life at it's fullest. They are missing out on the joys of early adulthood. They spend most of thier time with the older students like me, asking questions and basing decisions on choices that my peers and I did or did not make. They mistakenly see me as a peer, when in fact, my peers are the non traditional students going back to school in middle age.
Asking for our wisdom ..that's one thing, but balancing their lives on our answers ...seems to me to be a way to miss out on some important experiences.
I so wish that I could tell them ... for this night, put down the books (unless there is a test or a paper due tomorrow) and go to that pool party you were invited to. Go shopping with your girlfriend. Go watch that 4th of July fireworks display. Sit in awe at the meteorshower display with your friends ..while all those whose bodies have long since decided that midnight was too late to be up have gone to bed. Enjoy this moment of your life. It WILL pass too soon and when it is gone, you cannot retrieve it.
You cannot relive it. You cannot have these days back ... they are yours for the grabbing ...so grab them! SEIZE THE DAY!
The time for careers and choices is coming all too soon.
When you're 45 and you're in college and you have no degree ...that clock is truly ticking ...when you're 20 and you're in collge ...do your best ...get the grades, but live this life ... your clock is ticking too ..but not the same clock ... it's a different one .. one of freedom and fun and fearlessness ...
Please .. please put down the goals for tonight and pick up the beach towel ... enjoy yourself while you can. Your career will be there ... I promise you ..tomorrow will be here all too soon and you'll wish these days were here again.
Sunday, June 20, 2010
He Knows My Name (Tommy Walker)
I have a maker He formed my heart
Before even time began
My life was in his hand
He knows my name
He knows my every thought
He sees each tear that falls
And hears me when I call
I have a Father
He calls me his own
He'll never leave me
No matter where I go
He knows my name
He knows my every thought
He sees each tear that falls
And hears me when I call.
My name, something I've blogged about a few times. It was a source of irritation to me on many occassions but the one thing that God used to get my attention.
Recently, it has been brought to my attention,by God that he wants more from me ... for me to do more than serve him ...but to rely on HIM instead of me. To break down the walls that I've had up and to allow not only Him, but others in as well.
So, this morning, I go to church and we sing a couple of songs that have really hit home over the years and then ...we sang the one above ...
He knows your name...
He sees each tear that falls...and there I was, again, in public with tears falling down my face.
I wish I could see where this journey is taking me.
Saturday, June 12, 2010
As I pondered this 800th post, I thought about doing a review of my favorite posts. A review of the different type of posts. A review of ... and I worked on one and wound up feeling rather tangled in the mess that is my blog. I started to blog with the idea of it being a medical blog. Though, honestly I didn't know what that was at the time. It wasn't very long before I found Grand Rounds and participated.
I also found that I have little tolerance for blogging much about my health issues. Most of the posts have been done because I was emailed a question. That was the other odd thing I found. People not commenting but emailing me. In an attempt to get more commenters, for a while I removed my email ...but all it did was reduce the feedback. Commenters that did comment were still commenting, but those that had communicated through emai, stopped. So I put it back.
One of the most important aspects of my blog, for me, was the ones I posted on my eating disorder. It brought a very secret habit to the open ... honest and sometimes raw ... it left very little room for me to ignore the self destructive nature of the habits I'd worked my way into participating. I wonder, at times, had I not come out with the eating disorder if I'd not have retreated fully into that until it took my life.
I posted about my journey to get a house through Habitat for Humanity. I posted about my health. I posted about my issues with my sons education. I posted about my family issues. I've posted about many different area's of my life. The one I've enjoyed the most ... my choice to go back to school and the journey that has taken me on.
When I started to post, I was a mother of young boys, I was fighting Lupus and Myasthenia Gravis. I was the wife of someone who had a significant battle with polio and post polio syndrome. I did not see into the future ... I was too busy fighting today. Through many processes, including being successful at the difficult process of getting a house through Habitat for Humanity, learning I had more to offer a church than wishing I could do more .. I learned to find a dream ...and I learned I had what it takes to make those dreams come true.
Probably more importantly, I learned that I value my health ... and will do anything to be the healthiest I can be ... including learning to eat right and to not participate in the slow self destruction that I'd done since I was 14. I wish I'd learned before I developed gastroperesis, lost my teeth and developed polyps on my throat ...but I have learned.
I have learned that I can stand on my own. I've learned I can do things that are hard. I've learned I can be what I never dreamed I could be. I've learned that I am a person.
While I've made quite a few strides in the treatment for the eating disorder, my therapist has decided it's time to address some of the peripheral issues. Some, I agree with (my perfectionism) some ... not quite so sure (body image). I honestly don't see the point of working on body image while I'm on prednisone. While I'm the weight/size that I am ...what good will it do to try to appreciate what is not appreciable? I'm willing to work on it..but it does seem a bit of a waste of time/energy. *shrugs* I will possibly post about it as time goes by.
So, here I am ... finishing up the 800th post having said not much of anything, except that my blog has been a journey that I'm glad I have taken. I appreciate those that I've 'met' through this blog and have enjoyed reading many blogs out there of many different styles. Thank you, the few readers I have left, for sticking with me. Thanks for the encouragement that you've offered, particularly when Don was in the hospital 3 years ago and as I've headed back to school.
Friday, June 04, 2010
Delayed speech ...check
Little to no eye contact ...check
Little or no response to name ...check
Appears deaf at times ...check (he'd had his hearing checked 6 times before his 2nd birthday because of this trait)
Plays alone in a group of kids ...double check ...unless he can hide in a closet ..then he won't even parrallel play
Robotic speech ...check
by this time, I was terrified. We'd already had so much going on with him ... starting at less than a week old.
Self stimulating behavior ...check ..but that was the first time I could put a label on his constant spinning, banging into walls and hand flapping.
Inflexibility (routine oriented) ... CHECK
Moves constantly ...check, double check and triple check ... this was one way he earned his nickname Tazmanian Devil
Reactive to sounds, lights, textures, smells and flavors ...HUGE CHECK
He had all that and then some. He threw up daily because of his sense of smell, taste and reaction to textures of food in his mouth. He would not ..could not ..mix textures. No casseroles, no sausage biscuit, no biscuits and gravy, hamburgers were taken apart to eat .an if food was mixed ... there was no way in God's green earth it was going to be eaten by him.
He could only wear clothes of certain textures and socks were pulled over the toes on top of them because the seam of the sock was unbearable.
The next morning I called the family doctor for an appt. I couldn't talk. I handed him the newspaper and this giant, gentle man had been standing and suddenly was sitting down ...with a bit of color lost in his face.
He said it was all too possible. He would make an appointment for him to see the neurologist (Benjamin had been with a neuro since he was 2.5 months old)
We got into the neuro the next day.Again, I couldn't talk. I showed him the article and he looked at me, looked at Benjamin and said he'd be referrring us to a pediatric psychologist and a developmental pediatrician. The Developmental Pediatrician, just down the hall from the neuro (in Children's Medical Center) just happened to have an opening right then because of a cancelation. The neuro went with us to her exam room. We gave her a history ..thank goodness he was there, I was rather stunned.
The neuro left and she started to exam my son.
She said to keep the appointment with the pediatric psychologist. She'd do a full developmental eval, but, yes, the diagnosis is Pervasive Developmental Disorder -NOS. I had no idea how familiar I'd become with the new letters in our family's alphabet soup.
The developmental pediatrician gave us the CARS ...Childhood Autistic Rating Scale.
One of the most alarming symptoms that we'd found odd was his lack of response to pain. None ... he'd grab my hot curling iron and never react .. a few days later I'd find an infected burn. He'd try to reach his hand into boiling water to get at the potatoes or into an oven to get at the chicken. Thankfully he never succeeded at those, I was on constant alert if he was awake ...but, one time I did get a rather uncomfortable and nasty break to one of the bones in my feet when I realized he'd gotten a chair to the stove and spaghetti was being boiled. I tripped and down I went, which distracted him
When the evaluation was done ... which was a full 8 hours, done over 4 days in 2 hour segments ... she sat my husband and I down. She explained that the CARS had a scale of 1 to 60. 30 to 60 was autistic, and 20 to 29 was autistic characteristics. Benjamin scored a 39. Well into the autism range.
We then went into high gear. No internet in those days, but I stillmanaged to learn probably more than I could learn now. I joined the Autism Society, a mom's group and they increased his speech therapy to 2 times a week and OT to 3 times, and PT from 2 times a month to 1 time a week.
We learned about ABA and Sensory integration therapy in OT .. we worked hard.
After several years ... he was in the first grade (without an IEP but that's a story for another day) I realized that everytime I brought up the Sensory integration therapy his OT changed the subject. Frustrated, I decided to find out more. I was angry and frustrated that for 6 years we thought we were getting SID therapy in addition to regular therapy and he was only getting standard OT.
I was frustrated, angry and scared .. I went to my physical therapy for a post operative session and the therapist was asking about Benjamin. He then asked me if I'd talk to the pediatrician about moving his therapy to that place. I did, he did and so ...we did.
SID therapy was 2 times a week, standard OT (including using handwriting without tears).
We saw remarkable improvements. One of my main desires for this child would be his sensitive stomach ... any strong smell, good or bad, resulted in his throwing up. Daily he threw up. All I could think of was that no one should have to throw up every day. And we were dealing with Barrett's Esophogus with my husband and I couldn't help but wonder if he was not at risk for that as an adult.
During this time I was a very frustrated (and scared) mother. I'd go to the autism chapter meetings and the autism diagnosis made sense. I'd read books about it and it would make sense. I'd talk with other mom's of children with autism,and it would make sense. I'd talk with the doctor's and it made sense, and I'd look at Benjamin and it didn't make sense. (I'd said this to friends on many occassions)
We did so much in the sensory stuff, but the brushing that my friends had found sooo benificial, I was unable to do. My own health issues left me with the inability to do it. Brushing with the wrong pressure could backfire and make things worse.
My OT heard about an addition to the brushing therapy and given Benjamin's oral issues, was facinated. His boss sent him to Denver to a workshop to learn the method from the same woman who came up with the brushing therapy.
He came back to Tulsa, and his first day back we tried it with Benjamin. It was the same principal as brushing, but for tastes, textures and smells ... OT had been told theoretically it could effect all his sensory systems, but it was only really going to be effective on the mouth/nose.
So, we did it.
That night I had one very angry little boy. He hit me, he bit me (he'd never bit anyone before and here he was at 9, biting someone!) The next morning, I did the therapy and he bit my finger ... HARD. A few minutes later, he poured a mountain dew down my back. Frustrated I was going to tell the OT the next day that it didn't help ... in fact it made things worse, my child had changed personalities overnight!!
We got up to go to therapy and my husband went with me to help figure out the new plan. We took Benjamin to a diner for breakfast. We got him the standard breakfast and then became almost angry when he mixed the whole plate and poured gravy over the buiscuts, eggs and sausage mess. Then he did something that still sense shivers up my spine ..he sat there, still ...and ate it and did not throw up. It dawned on me that he'd not thrown up even once since before therapy on monday. This is a child that started throwing up (projectile, not spit up) before he was 10 hours old and had continued to do so without missing a single day .. sometimes several times a day. He'd gone 2 days ... he was eating mixed foods.
The change was remarkable ...and fast ... he, to this day, has not thrown up because of smell or texture. The only time he has has been when he has a migraine or stomach flu.
Time went on, the therapy continued and this child started to emerge from what we'd always known as Benjamin. Eye contact ... self stimming all but extinguished ... interactions with other children ... one by one the autistic characteristics disappated.
We recieved a letter that the developmental pediatrician was moving and wanted a final appt with Benjamin. She'd not seen him in a year and we walked in, he held out her hand, made eye contact and initiated a conversation (he had to, Dr. R was too stunned). She pulled out a CARS form ...and his new score ....
From a 39 to a 14.
I've spent years saying that what we had was a 'proper misdiagnosis' ... he'd fit the profile/diagnostic criteria ...but his real diagnosis was Sensory Integration Disorder (along with TS/OCD/IQ of 80/Auditor & Visual Processing Disorders)
Thankfully, the pediatric neuro had been firm about any diagnosis could be 'fluid' ... just because we say A today, doesn't mean tomorrow with changes ... in Benjamin or in medical science ...and tomorrow could be a P and the next day an H.
Today, his IEP lists popularity and above average social skills as his strength.
Sensory issues crop up now and again and I remind him to do the oral therapy. Usually 2 or 3 days of it and the SID gets back under control for several months.
Our journey into the world of autism lasted from age 2 to age 11. 9 very long, painful, and terribly frightening years.
But I learned sooo much ...about perseverance, about determination, about coping and most of all ..about change.
Monday, May 31, 2010
June 2, 1992 … A day neither I, nor my family are likely to ever forget. It is the day a saw was taken to have my breast bone and was opened wide to remove my thymus gland. This had the hoped for potential of putting me into remission.
October 13, 1989 I was a healthy, strong and active woman expecting (13 days past due date) her first child. October 14, 1989 I was a new mother and had been ushered into the world of medicine, medication, diagnosis processes, surgeries and the chronically ill. I had been a full time student, waitressing full time and walking 5 miles a day. Within 3 days I had double vision, my arms would fall when I’d try to do my hair or make up, swallowing and chewing had become an issue and I’d fallen several times.
It wasn’t until the second week in March, 1992 that I was diagnosed with Myasthenia Gravis. (that, is and of itself another story ) The treatment, they said, was a drug called Mestinon (I call it my little white miracle pill); Steroids; Imuran; and a thymectomy.
Because of my family situation it was decided that the thymectomy would take place in June after school was out. (Husband was a full time student, Mom was a teacher). I became more and more nervous in the intervening 3 months time. The idea of having my chest cut open was not my idea of a good time. However, by this point, I was willing to do anything to get rid of the overwhelming weakness and fatigue. Ironically, 18 years later, I’m still willing to do anything to get rid of it.
June 1, 1992 I checked into my local hospital, and was prepared, again for the surgery I’d have first thing in the morning. They had me shower and cover my chest in beta dine. I went to sleep and woke up as they were giving me a pre-surgical medication. I got down to the surgery area and was already getting a bit groggy. All I remember is that my sister in law was on duty (as a surgical nurse) and she was there making sure I was being well cared for. The anesthesiologist came up to talk to me and all I could think was “those eyes! They’re beautiful!” To which, I announced to him and everyone else around. (Not in my normal behavior!)
I was taken into the operating room where I remember the surgeon saying hi, and the beeping of the machines and then I was in recovery demanding to know if my babies were OK. My sister in law leaned over me to say that they were fine, I’d had surgery and the babies were not involved. (I must have thought there was an accident or something). The pain was unreal. The one thing my sister in law said was nice is that I’d not remember flirting with the anesthesiologist or the demands to know my children were ok. Um … nope, remember both clearly!
I had been told that morphine would not be used because of it’s associated risks with myasthenia gravis. I do not remember the medication that they said they’d used. In the operating room they gave me my first dose and apparently, I started to crash. They gave me IV Mestinon to help and then gave me morphine because worst case scenario I’d need a respirator that was going to be needed if they used the substitute medication. Ironically, the Morphine *didn’t* effect my MG. Later that day, there was a nurse that was talking to me, telling me that I would be unable to remember most of what happened due to the morphine and to not let that bother me too much. Ironically, I was probably as clear headed on the morphine as I am now (which is kind of scary if you think about it too much!).
About 6 hours into the ICU stay, a nurse came walking into my room, assuming I was asleep (MG was causing my eyelids significant drooping, it was easier to keep them closed) she told the nurse that there was this guy who claimed to be my brother, but there was no way … blond hair, significantly lighter skin and blond mustache … I grinned a myasthnic snarl and said “That’s my brother in law, Terry!” The nurse looked at me a bit sheepishly and said “boy am I glad morphine won’t allow you to remember me.” (WRONG AGAIN!)
My brother in law came in and joked with me. He told me some ridiculous joke about a llama and a camel that for the life of me I can’t remember. (Go figure)
That evening, the pain started to worsen. I asked for some pain relief and the male nurse said he’d get some morphine. No one had told me or my husband that they were using morphine. All we knew is that morphine could be cause for need for respirator. We both went into panic demanding something else. The nurse rather callously said that the only thing on his orders was morphine and he was not going to call the doctor at 9:30 pm to ask for pain relief for anyone.
My husband, became upset (understandably) and demanded a solution. My chest had been cut open and he (nurse) was going to wait till the 9 am rounds? Almost 12 hours without pain relief was unacceptable. They argued for several minutes rather loudly till the nurse slammed the door and came back in and shoved my chart at my husband to show him that they’d be using Morphine. My husband took a few deep breaths and explained to him that no one had *told* us I was getting morphine, just that it would never be used on me.
The nurse got the morphine for me, then I didn’t see anyone till the next morning. I woke up to the surgeon saying “What do you mean you’ve not checked on her since 10 pm? What is ICU FOR?” (I’ve had 15 surgeries, and 27 stays in the hospital, I’ve had 3 bad experiences, and 2 of them were in this same ICU. But when Don spent a week there, it showed no evidence of being what I’d experienced.)
A day or two after surgery I learned that respiratory therapy was going to come in about every 3 hours. They would put some liquid into this little cup, plug the tube into the wall and I’d breathe and I’d feel better. They’d have me cough and I’d wonder how someone could go from savior to torturer in 5 minutes time!
They said I’d be in the hospital for about 5 to 7 days. That came and went and neither my blood tests nor my breathing tests were where they felt they could send me home. By the 9th day, they said I was getting close. The 10th day I received a call from home, my 3 year old had stopped talking …all together. This child who was using complete sentences at 1 year old had stopped talking and stopped communicating. I spent 2 hours crying over it … afraid, worried and desperate to get home. I heard my surgeon’s voice in the hallway. I got up out of bed and walked to the nurses station and demanded to be let loose so I could go home to take care of my child. He said that anyone that could stand that straight, walk that fast and be that determined, could go home.
It would be 15 years before I realized the importance of some of the short term relationships I'd built. I was a flexible patient. Understanding, and kind. I was not demanding and was, for the most part, complient (and if I understood the importance, I was totally complient) I asked the doctors, nurses, nurses aids and respiratory therapists how their day was going. I thanked them. I tried to never take advantage of my role as patient. When my husband went into critical condition 3 years ago ... I dealt with many of the same people. They remembered me, they remembered what kind of a patient I was ..and they bent over backwards in their patient care of my husband. (While I realize most people might not be remembered, having such a rare illness as Myasthenia Gravis, married to someone with SEVERE effects of polio .. that patient kind of sticks out in ones mind)
They let me go and a week later I was in the surgeon’s office … my baby (6 months old and 18 pounds) had been hospitalized with pneumonia. He’d gotten hungry and the nurses weren’t coming to pick him up to give to me to feed him. Time went on and he was becoming hysterical and I picked him up … a bit more than the 5lb limit I’d been given. My breastbone immediately let me know that I’d made a drastic mistake. The surgeon said I should have just given him the bottle in bed … the problem was, his reflex was so severe that he’d throw up if he wasn’t at just the right angle, he’d throw up (which was the suspected cause of the pneumonia, aspiration). It wasn’t that easy … so the surgeon called the pediatric floor and said that they MUST do the lifting of this child in a timely manner that did not risk his patients health in the process. He also put in a call to the family doc who was caring for both myself post surgery and my baby.
At the time, I was sure that the thymectomy would be my ‘miracle’ heal from the surgery and sometime in the next 3 years the MG would magically go away. It didn’t work that way. It’s been 18 and while MG is no longer the prominent focus of my life that it once was … it is still there, daily as a reminder that I must put my health in the forefront.
I have been asked, since the surgery did not work, would I do it again if given the chance, knowing what I know now (about the chances of it working). Yeah, I would, I’d have done anything to rid myself of the feeling in my muscles that it gives. The reality is, if I went to my neuro tomorrow (I have an appt at 9 am) and he said “there is evidence that we missed a bit in your thymectomy, if we go in and remove the remaining cells, there is a 10% chance of total remission” I’d do it .. it’s 18 years and I’m significantly better …but the weakness is uncomfortable and undesirable and again .. I’d probably do anything to rid myself of the symptoms of the MG.
Thursday, May 27, 2010
I don't expect you to read this before I see you next Wednesday, but I almost emailed you last week and spent the whole week talking myself out of it. I thought if I continued to talk myself out of it, I might not even bring it up next week so, for accountability sake, I'm emailing it now. It also helps that I've just finished with my class and it's all fresh in my mind.
I've been interested in Yoga for years, but wasn't healthy enough to do so, so when I got the scholarship to do this AND the doctor's approval and I knew you were all for it, I went for it. As you said "in typical Peggikaye style."
I was excited and caught quite off guard by the pain relief ... that alone makes this journey worth it. If I can get 6 hours a week of pain free, it's golden!
Last week, when we got to the end, the meditative portion, I became almost tearful and had no idea why. Tuesday, I realized that the tearfulness started when Sunny said to 'let the earth support you' I think the feeling of being supported, not having to do it myself was a bit more than I'd expected.
I've been praying about this for a while, and was asking God to give me a scripture in particular to meditate on. I sat on my mat today and immediately a couple of scriptures popped into my mind that I usually don't think about in relation to me, but have used frequently when trying to encourage a friend Psalm 139:14 I will praise You, for I am fearfully and wonderfully made; Marvelous are Your works, And that my soul knows very well; and Jerimiah 29:11 For I know the plans I have for you," declares the LORD, "plans to prosper you and not to harm you, plans to give you hope and a future.
I didn't expect that and as hard as I tried to think of some other verse to focus on, throughout the whole work out if I wasn't concentrating on breathing and poses ..those were the words running through my mind.
Tuesday, I made the drastic mistake of letting my perfectionism come through and wound up sooo very sore ... I didn't try to make accomodations, I tried to do what the instructor was doing ... part of it was frustration at knowing that there was a time in my life that my muscles and joints could do those things, part was frustration at my weight and my long time frustration with my legs being too long for my short body and my arms being too short. Not a good combo when you're trying to do certain things, add to the mix the weight getting in the way, I became competative with my teenage self and frustrated at my middle aged self ... and determined to do it 'right'. lesson learned.
So, today, I spoke with Sunny before class and she said she was somewhat surprised at what I could do, having never taken yoga before, but I was doing it, so she let me be. She promised to either verbally hint that the pose could be accomodated or to show me a beginning pose. My soreness disappeared as class went on. Which, hit me that I'm working so hard to be perfect that ... I usually wind up hurting myself in the process.
She's been talking about some of the philosophy of yoga ...today she talked about not being greedy. I can't remember the terms she used, but the way she phrased it included trying to gain skills that are unnecessary .. and at times may not be what God has planned for me. I may be over philosophizing there, but not sure. I'm going to think on that.
When we reached the meditative part of the class and as I started to relax the tears started up again. I tensed up in an attempt to stop them (which worked) and as I breathed to relax again, the tears started ... oddly enough, I've been so afraid that if I cried I'd be a bumbling mess, but it wasn't like that, it was simply tears rolling down the sides of my face. It struck me that since I was supposed to be perfectly still, I couldn't wipe them away. Tensed up again and the realization that I've spent years fighting tears ...and the energy it was taking to fight those tears ... suddenly seemed as wasteful as the oil spilling into the gulf. (crude analogy, but it was what came to mind.)
As I relaxed, the tears came again and Psalm 56:8 came to mind
You keep track of all my sorrows. You have collected all my tears in your bottle. You have recorded each one in your book.If I am hanging onto them …how can God collect them? So, I laid there with tears falling down my face and not able to particpate in the exercise if I fought them and unable to wipe them away to hide them … and so they rolled down my cheeks. They were gentle and easy and no one seemed the wiser as we packed up to go.
I’m a bit overwhelmed … I know you mentioned the yoga effecting emotions, but I’m not sure how, or why or if I even am supposed to understand it at this point. I got in the car and turned on my CD and a song came on called “Remember Surrender” (same CD as the one that has Less like Scars that I shared with you a while back)
Remember the rest
Remember that weight lifting off of your chest
And realizing that it's not up to you and it never was
Remember how tears rolled down both of your cheeks
As the warmth of a heavenly father came closing in
I want to do that again
Why can't I live there
And make my home
In sweet surrender
I want to do so much more than remember
Remember how soundly you fell fast asleep
In the face of your troubles your future still shone like the morning sun
Remember that sound
Of all of those voices dying down
But one who speaks clearly of helping and healing you deep within
I want to do that again
Why can't I live there
And make my home
In sweet surrender
I want to do so much more than remember
Anyway, those are the thoughts that have been going through my mind. I’m feeling a bit out of control because I have no idea where God is going to lead me with all of this and well, I kind of like knowing what I’m doing, why I’m doing it, where I’m going and how I’m going to get there.
See you Wednesday.
Ignore the messy kitchen. I signed this a couple of months ago (then couldn't get it to upload on my desk top computer, but this little laptop did it with no problem) for Medi Medi Mary (M3)
About half way through I get this funky expression on my face ... as I realized that I should have listened to the full version of the song before signing (for timing as well as lyrics) and maybe, just maybe practicing it a time or two ...and maybe brush the hair, a tad of make up and not in Pj's .... but by the time I realized all that I was half way done ..so I just kept going. I don't think I've signed this hymn before, even though it's one of my favorites.
Thursday, May 13, 2010
I needed help to walk up the stairs and down the stairs resulted more often than not in a tumble down the stairs. A gallon of milk was as likely as not to land on the floor. I dislocated my shoulder by slapping a friend in the shoulder as part of the musical we were in.
My ankles would twist in a heart beat, every single joint would hyper extend. I was born with hypermobile joint syndrome, but the weakness of the myasthenia gravis intensified the joint instability.
My doctor said that yoga was a very bad idea. Weak muscles, that only get weaker with use and unstable joints ... yoga was not likely, at that time, to make me stronger and the flexabilty would worsen .. in my case a bad idea.
Here I am 12 years later with lupus having effected so many joints ...the hyper extention is no longer an issue for almost any joint. My thumb can ALMOST still touch my arm, where I used to be able to lay it flat on my arm. My knees don't hyper extend, neither does my ankle, shoulders toes or knees. A few have gotten tight beyond what's normal.
I can walk up and then down a flight of stairs (although there are times I still fall). I no longer wear leg braces. In short, I'm healthier than I was 12 years ago. So, I asked again about Yoga, same doctor thought it was a GREAT idea and gave me the go ahead.
I'm not a person who breaks the ice easy. I don't like going to strange places and if I try something new, I'm likely to need a friend to do it with me.
But this summer, my determination to do something new and different ...and healthy ...drove me to seek out a yoga class. I found one, signed up and went to my first session on Tuesday.
I had trouble with a few of the poses, but mostly because of my weight, not ability. I LOVED the session. When I got home I wrote the following to my therapist:
I just came from my first yoga class. I absolutely loved it! I was afraid ... something new ...new people ... expectations ...and then the ever present fear of rejection ..for whatever reason, but in this situation, specifically my weight.
I also was afraid I'd be fairly miserable at being physically able to do anything.
I had a chance to talk beforehand to the instructor when I signed up. She asked me about my health issues (she was familiar with most of them) and said she knew how to help me make the appropriate modifications.
She also said she'd let the class know that it would be a bit longer to allow time to help me.
I showed up, everyone was incredibly nice and I felt absolutely no judgment. Lots of encouragement and hints for 'survival'. We started and the extra time turned out to be unncessary. She didn't need to help me with much. After class she said that my own instincts to modify appropriately were remarkable. She also asked me "Are you SURE you've never taken yoga before? ever?"
That made me feel good. I could do a large part of what we did, some, my weight is an issue, but most I could do. Balance has always been a particularly bad issue for me, i've spent WEEKS and hours in PT on balance ...until they gave up and said that I just needed to be careful. I was able to do the balance pose, at least the beginning pose.
She told me that my phase one was 'beautiful' and after class I got a lot of encouragement from the other class members. One guy said I'd be teaching before too long (a bit of an exaggeration,but his intent was very kind!)
Dr. Holt said I could go up to 3 times a week, the package I bought was 12 classes in 100 days, so I figure 2 times a week to start probably good. I can take it next fall at TCC for free if my classes don't conflict with the yoga classes.
It was amazing. I walked out of the class completely pain free for the first time in 15 years. The pain relief lasted for 3 hours and I'm still in less pain than I've been in a long time. I go again to my class tomorrow. I'm looking forward to this new adventure ... self discovery ... healthy ... mindfulness ...
Tuesday, May 11, 2010
I'm going to sweep and mop,
I'm going to put things away.
I have plans for tomorrow
The play I've been dying to see is playing
I'll shop for a dress or maybe I'll borrow.
I have plans for next week,
There is a parade down mainstreet,
That is ... if i don't get too weak.
I'd planned on cleaning,
but my arms were too tired,
My legs made sure on the wall I was leaning.
I'd planned to go and see a play,
But my eyes went double and eyelids droop,
So once again, home in bed I will stay.
This Myasthenic Monster crops up unwanted,
When chores or fun or adventure comes,
Whatever it says, I refuse to be daunted!
When Myasthenia roars, I will roar back,
I will push forward, and rest if need be,
Rest, regroup, till the muscles don't lack.
Disappointment has come once to often,
But I know that I'm stronger than the disease,
No matter the goal, my resolve won't soften.
I sometimes have to say no,for sure,
But as often as no, I will stand and succeed,
Push forward and back, but I will endure!
Saturday, May 08, 2010
God loves a lullaby
In a mothers tears in the dead of night
Better than a Hallelujah sometimes.
God loves the drunkards cry,
The soldiers plea not to let him die
Better than a Hallelujah sometimes.
We pour out our miseries
God just hears a melody
Beautiful the mess we are
The honest cries of breaking hearts
Are better than a Hallelujah.
The woman holding on for life,
The dying man giving up the fight
Are better than a Hallelujah sometimes
The tears of shame for what's been done,
The silence when the words won't come
Find More lyrics at www.sweetslyrics.com
Are better than a Hallelujah sometimes.
We pour out our miseries
God just hears a melody
Beautiful the mess we are
The honest cries of breaking hearts
Are better than a Hallelujah
Better than a church bell ringing,
Better than a choir singing out,singing out.
We pour out our miseries
God just hears a melody
Beautiful the mess we are
The honest cries of breaking hearts
Are better than a Hallelujah
Better than a church bell ringing
better than a choir singin' loud
Friday, May 07, 2010
I took Intermediate Algebra
and Women's Studies.
The intermediate algebra, like beginning algebra, took the wind out of me. My professor reminded me that most students in the class have A) had algebra before B) they haven't been out of school as long (although most out at least 5 years) and therefore for them, it's a review. I never took Algebra at all, so for me, this is new information. AND it's been so many years since I had pre algebra (almost 33 years now) and most people take it in high school and have a full year to take what I took in 1 semester .. and adding to that, I managed to accidently get into an 8 week class ...so I had 36 weeks worth of information jammed into 8 ... and for me, it's not a review.
That made me feel better ...that and the fact that it's not a credit class, therefore it has no bearing on my GPA no matter what (not A nor F) So, I'll repeat these classes as necessary.
In Adult Psych I ended the semester with an average of
Between yet another semester on the President's Honor Roll and my induction into Phi Theta Kappa Honor Society as well as elected to Vice President of Service in Phi Theta Kappa ... I feel pretty good about the semester!
I'm also, as of now, a Junior. I went back to school 4 semesters ago feeling very anxious ...could I do this? Was I physically capable.
I rarely let onto how much doubt I felt ... but I was absolutely terrified.
I wanted my support system to know my passion and support that, not support my fear ... so I kept my fear to myself.
But this semester it has finally dawned on me that not only do I NEED to do this, but I, in fact, CAN do this and more importantly, SHOULD do this!
Wednesday, April 28, 2010
I'm having odd feelings of "I can see the light at the end of the tunnel" and "oh my how far to go!"
But, in 5 semesters I should have my Bachelor's Degree. (probably a BS, but could be a BA, not sure at this point) Still have masters and Ph.D after that, but ...when I started I had a mere 23 hours and even getting to 60 hours seemed so far away ... I'm getting there ...slowly but surely!
Monday, April 19, 2010
At the picnic, my young son, not even 4 yet, started to get ansy. He was tired and in need of a nap but the picnic wasn't over for about 4 more hours. I left my oldest with a friend and ran home to put my son to bed. (hubby was home) I waited till I knew he'd fallen asleep, because hubby was taking a nap, too.
I turned on the TV and saw that all hell had broken loose in OKC. It was not a pipe bomb. I was stunned. I gathered myself and ran back to the picnic. No longer in the mood for fun, I told my friends of the true devastation of the bomb and went home. I spent the next 3 days glued to the TV.
I had this uneasy feeling that someone I knew was in the bombing. I kept telling my husband I wondered where everyone from Proclamation was. (I'd been in singing ministry called Proclamation. We'd scattered all over the country when it was over).
It was an odd thought. I had no reason to think I might know someone, but it was nagging at me. It turned out to be nagging at several from our group.
The friday after the bombing, (was a wednesday morning) CBS released the first 6 names of the victims who had been identified. As I started to climb over the toddler gate between living room and kitchen I heard the name
I sprawled out across the kitchen floor and became somewhat hysterical. My husband could not get what happened out of me and called my mom. Mom finally got the words "Trudy Rigney died"
When I finally settled down, I looked up the one person I knew was still in town and told her what I'd heard. She did some quick research to verify and we started to call the members of Proclamation as we talked to one person who knew where someone else was ...calling information, calling colleges for alumni information ...we contacted many of our group. I heard over and over again "I had the uneasy feeling that we'd lost someone from Proclamation in that blast."
It has been 15 years since McVeigh took Trudy's life. Her son thrived. Became baptized and married (and if I remember right, became a father).
Trudy will never be forgotten by me. She was a tremendous young woman who had the kind of compassion that everyone needs to experience. She will always keep a place in my heart and I will miss her terribly.
Tonight I'm being inducted into the Phi Theta Kappa Honor Society. They will be paying tribute to Trudy ...a former president ..not only for PTK, but at the college and campus I'm on. It's fitting.
I feel a bit closer to her being able to share this with her. I wish she was here to see me inducted, but I know that she knows and is proud. Not as proud of me as I was of her ...that'd be impossible.
Trudy, you're always in my heart. I miss you, I always will.
Friday, April 16, 2010
I did not take the final, because I knew that even if I could get a C in the class (very doubtful) I had in no way shape or form learned enough to move on to College algebra. Me, in an 8 week class wasn't the smartest move I ever made. However, I did get a good introduction to the material, and know what I need to know to retake it. So maybe it was better to be tortured for 8 weeks instead of 16 weeks.
The final is school wide and done on a computerized program. The program costs $84. I chose to not use the program that I'd spent $84 on, and save it for my retake. It made no sense to use the $84 for a final for a class I needed to retake. (There was also my instructors determination to give me the grade my work effort gave, which would have been an A, but without passing the final with at least 50% the most he could give was a C. So he planned on giving me a C. I kept telling him that to do that would mean financial aid would not allow me to retake the class.) My instructor either would not, or could not see my delimma. I get that he was trying to be nice, and helpful, but he was really complicating things.
About 10 days ago, I recieved notice from the school. I was being billed for $700 and until they got the $700 they were blocking my records. This meant I could nto register for next year and I could not get my transcripts to complete my application to NSU. I had no idea why they were billing me for $700. Since I'd gotten full financial aid, there was nothing that hadn't been covered.
I go in and find out that the algebra instructor had put my status in as a WNA ...Withrawl Never Attended. This meant Financial Aide wanted their $700 back for the class I never took that they paid for. Only, I DID take it. I emailed the instructor and he waited till today to get back to me.
His reasoning is that a withdrawl is better on the transcript than an F ... yeah, if you're not on financial aide probation for having dropped too many classes in your
20's and if you drop a single class you will loose all financial aide until the year 2099 (yes, that's what they've told me). An F on a 'developmental class' or zero level class has no bearing on grades. None. An A on a developmental class also has no bearing on grades. They are zero credit classes and while they appear on transcripts, they do not in anyway shape or form effect the GPA. An F shows that I took the class. I DID attend the class, I just didn't PASS the class.
So, he emails me back and says that it's April 16, and do I really still need him to change this. Um, I sent you an email YESTERDAY asking for you to please address this. Nothing has happened int he last 24 hours to change that.
Anyway ... hopefully that will be taken care of soon so I can get into the good intermediate algebra class before it fills. If I wind up with a cruddy instructor because of this, I'm going to be less than pleased!
This semester I took an Online Adult Psych class. A women's Studies class and a child psych class and the 8 week algebra class. Today, I sent in my final essay for Adult Psych. This leaves me with just 6 hours a week. Women's studies and Child Psych. Which is nice because both have me with quite the work load.
Although, Tuesday I will turn in one essay and give a presentation and then only 2 tests and a major paper left.
Last semester I was in class 18 hours a week (for 13 hours credit) and this semester I'm in all of 6. Odd.
I do not like going just on Tuesdays and thursdays. I've learned I prefer the rhythm of the M-F.
For almost 3 weeks now I have been dealing with a severe headache. I'm getting tired of it ... my patience for my health issues are wearing thin. I guess somehow I thought if I went back to school, that would be the cure for what ails me. Not sure how I came to that conclusion.
Friday, April 09, 2010
I was sitting in my Women's Studies class, watching a very funny routine by Whoopi Goldberg about how women and their communication (about womanly things) had changed over the last 50 years. Teresa and I were laughing, sometimes so hard it was hard to breathe.
Suddenly, a classmate sitting in front of us turned her phone to me and showed me a text. Wilma Mankiller had past away.
I learned that her influence on me was greater than I'd thought and that my tear ducts not only still function but they can function in front of people. (I don't cry often, and rarely ever let anyone see me cry) I left the room to compose myself and came back feeling stunned and somewhat alone. My role model had just died.
There are supposed to be some existing pictures of me with her. I'm hoping the person who told me will follow through and send them to me. (I met her a handful of times)
I left class and went onto child psych. Somewhat subdued, along with my classmates that take both classes. We'd just paid tribute to her a month ago (today).
In Child Psych, the professor dropped a bomb on us. Extensive plagerizing. While I didn't plagerize, (as a writer, that would never happen! I've been plagerized and I know how it feels!) her definition of plagerism had me conscerned. I had a quote in my paper that was in quotation marks because it was a commonly used phrase ... however, not being a 20 year old, I should have given credit to one of them. Most people over 40 are well aware that Hillary Clinton first said "It takes a Village." I'm well over 40 so I have no excuse.
Long story short, after a sleepless night, a conversation with instructor and she did not consider what I did plagerizing. I was safe. Next time she said, use 'x' instead of "X" for catch phrases or at the very least put "(from unknown origin)".
Left school to go to my sons IEP. Anyone following this blog will know how difficult those meetings have always been for my family. (IEP is the annual meeting between families of children with special needs and the teachers and administrators responsible for giving him special ed services.)
For years, I've struggled with Benjamin's special education services. Whle this school district is significantly better than the previous, it is still falling far short of what is needed. (one teacher flat out said he would not make accomodations for him, and then gave him a hard time in class for not passing. Going so far as to one day saying "we have only one F on the test and we all know who that is." (um what happened to not discussing special ed students with others not a part of his team?) And no, as far as I know there were no consequences for this mans statements.
They've never given him appropriate services and I've tried to walk the tightrope between doing what is necessary to get my son the most I can without causing them to hate me. (so they did not take it out on my son.) When the doctors told us that he should be in special education classes, he was not quite 3 years old. We took him in for the evaulation and they said "no, he's just fine" and sent us out the door. He wasn't three yet, so we let it go. The next summer, we did the same. They again said "nope." Docs said "yes!" and we took them, successfully, to due process. Again,t he next year they did the same and back to due process we went. The next year, they did the same and this time we went to arbitration. Abitrator told us all that he was to be enrolled into Head Starts Accomodated Services at school expense.
The next year ... OASIS in the dangerous desert that is Public Schools Special Education Services and he was accepted to the highly successful The Little Light House.
The Little Light House is a non profit, special education, Christian school that is no cost whatsoever to the parents. At this school he recieved his OT,PT and speech therapy. So not only was this a break from the public school battle, but for a year, we had to take him to school. Not to school AND PT AND OT AND Speech. Support for the parents, education for the children, services for the children lead to a very safe place. Unfortunately, they only take birth to age 6 and he was 5, would be 6 during the school year. He'd only be elligible for 1 year.
That was ok, because I thought he'd be accepted for Special Education services the following year. (TLLH has such a reputation, schools RARELY go against the programs recommendations. However, the district we were in, made the exception on a regular basis) TLLH could have been his kindergarten and we couple place him into first grade or we could use it as pre k and place him in K. We didn't trust our district to provide appropriate services (any wonder why?) and chose kindergarten to give him the best chance possible. I often wonder if the battle would have been less if we'd place him in first grade.
Long story short, we didnt' get an IEP until 2nd grade. Even then, the placement was wrong and not enough or appropriate services. They were only doing it because I'd gotten fed up and called a congressman who ordered the special ed services to be audited. We have been fighting, to a lesser degree ever since. They've always tried to prove to me why he was just fine (he's delightful was their best excuse. Um, so you're going to remove every delightful child from special education? This is SpEd not education for the emotionally disturbed!
They have made me point out all his deficits, while they tell me what a terrific child I have. It always frustrated me and caused great pain to be put in the position of being the one to tell them what is wrong with my child. NO mother should have to be the one pointing out their childs faults to the school!
So, Tuesday, they tell me what's wrong, and what's right and place him with appropriate services. I learned something ... being told your childs faults really isn't easier than being the one to tell them. (I still firmly believe no mother should be placed in that position)
Benjamin however, took it great. Listened, took notes and plans on using what he learned to help him improve.
I get home and I'm sitting on the computer, reading blogs and the doorbell rings. It is the police wanting to know if my sons best friend is here. He was. His sister had called the police to do a wellness check. Clinton, who has a hard time with the police because he watched them TWICE take his father away, was less than thrilled. He also didn't feel that telling his sister "I'm tired of all this mess" was worthy of a suicide prevention call.
All of that took place between 12 noon and 5:30 pm.