Wednesday, July 23, 2014

A Friend's Journal

My friend Bob Keefe was a combat helicopter pilot in Vietnam.  He kept a daily journal for most of his time in Vietnam......he has put this journal into a book.  I am very honored because Bob let me read his book this week.

From the time I was twelve years old until the Vietnam War ended, a family member or friend was sent to Vietnam every year and some did not come home.  During my early teen years I stopped watching the evening news because  the sight of all those body bags made me sick and frightened.

As I read Bob's journal this week, I have wept more times than I care to count.  When I finished his book today, I wept more........for the loss of life, for all the soldiers who came home fighting an even greater enemy, PTSD, for those whose lives have never ever been "normal" again, the innocence that was stolen from every person who lived in this country during that period.

I wish that the leaders and business who thrive on war would read this book......but you know it probably would not touch their hearts at all......for they are so removed from the heartbreak, the ugliness and pain of war that Bob's journal would not cause a blink to their greedy little eyes.

His book is filled with raw honesty......and for many, well maybe for most.....they don't want to remember, they don't want to know what an average soldier saw or felt........I am not one for living in the past......but I know that our past teaches, that our past offers lessons to be learned......and I don't think those who lead this country learned much at all from Vietnam.

Bob is struggling with having his book published, after all it is his daily journal from 1966-1967........I think he worries about the feelings of his friends and family......and this Marine is a very gentle loving soul.  So whether he chooses to publish or not, it is his choice......but for me, I am grateful......I am honored that he allowed me to read it.  I am proud to say that Bob Keefe is my friend.

Tuesday, July 22, 2014

Intention

Intention......classes today were based on setting intentions for our daily lives.  Take a simple seated twist, think of it as an easy way to remind yourself to let go of the past......don't look back.  Mountain pose.......reminds us of the strength we did not think we had ( after all, I teach at an alcohol/drug rehab center, it takes some strength to check yourself in)  we are always stronger than we think.

We all have intentions.....well, we probably think of some of them at least once a day. So what do we do to remind ourselves of them......we can use yoga postures, songs, pictures, words......many ways to be creative.   If you want to practice guitar every day.....don't leave it in the case.....put it on a stand where it beckons to you each time you walk by.

For me,  several months ago I set my intention to do vocal exercises at least three days aweek.......I put them on my phone and the three days I work each week.......I do them in the car. A student talked to me about her desire to stop smoking.......I suggested that each time she wants to smoke, first she has to drink a glass of water.  A couple of things can happen here, at least she is doing one healthy thing (drinking water) and I read an article  awhile back, that a glass of water before each smoke helps to flush the nicotine from the body.  Not sure if that is true or not, but I have found that when you start with one healthy habit, others follow.

I am well aware of the old saying, "the road to hell is paved with good intentions."  The secret is to to follow through with those intentions, not just say or think them.  It's one breath at a time, one day at a time, one intention at a time.  Each morning set one intention.......it can be anything from being kind to a stranger, eating a healthy lunch, letting go of judgement.....whatever you set, find a way to remind yourself.....a post it......a stop sign....
the color blue......you will find a way.

Monday, July 21, 2014

Quality Time

Jordan came over and spent some quality time with us today.......quality time......laughter, a trip to the barn,
some food, a few cartoons......more laughter.

We should all have this kind of quality time every day.
Goodnight, Sweet dreams

Sunday, July 20, 2014

A Love Fest

The past few days I have been in the middle of a love fest.......I have received notes, gifts, cards, phone calls and texts ........all reminding me that I am cared for, that I am loved. It is a wonderful event, this love fest......to know that people care.

My mom use to send cards and note to her friends and family members........I asked her once why she did it.......she smiled and said "don't you love it when you know that someone is thinking of you, that someone cares?"  Her loving kindness paid off........after she became ill, her mailbox was always full of cards and notes, her phone was always ringing.......even in the throes of dementia......those cards and calls touched her heart.

So this is to remind you all tonight, that little note, or card or e-mail or text or five minute call or short visit.......can brighten someone's day more than the brightest ray of sun.  We all need that human connection......we might be ill, or having a bad day or in the throes of a life
crisis .........or maybe, we just need a reminder........that we are loved.

Saturday, July 19, 2014

Saturday Night

We played at one of our most favorite spots tonight.  Berkeley Bob's Coffee House in Cullman, Al.  What a crowd!  So many of our friends came, so many songwriters came.
Our friend, Joe Greg Winsett opened for us, our buddy Ron Brown played harp on one of our songs, our friend Wes Laird did a couple of tunes and as always, Fred Miller is the best sound man anywhere.

After the last couple of weeks, I needed tonight.  I needed to see my friends, I needed to sing
and feel the love of the crowd.  I hope your Saturday night has been as good as mine.
Goodnight, Sweet dreams

Friday, July 18, 2014

IVIG and Me

For the most part, I am a fairly private person, I share but I try to limit or filter.  I have written about my treatments, and to an extent about my chronic fairly rare disease.
But, tonight because I call this blog Transformation Information I think it is time to share a little more.

I know that many of you deal with rare diseases and chronic illness and like me, people look at you and talk about how great you look and that you don't look sick........even when you feel like crap.  I know that many of you like me, have searched for answers......sometimes you find them, sometimes you don't.  All I can tell you is keep searching.

I started IVIG monthly treatments two and a half years ago.......immediately I began to have new symptoms.......each time I spoke with my doctors about the new symptoms, they assumed that something new must be wrong, though I kept telling them I didn't have the symptoms until my treatments were started.  I had MRI, a CT scan, blood work, x-rays.....all showed nothing.

After awhile, I had done much research on IVIG and found that around 5% of people who receive long term treatments have issues or side effects with them.  All the information I found suggested slowing the drip, taking nsaids, and antihistamines and drinking lots of water.
So, I told the docs what I had read, we slowed the drip........sometimes the side effects lessened, or weakened and for a couple of times totally disappeared.  But the past few months, they have come back with a vengeance.......and this month has been the worst.

In the meantime, my original doctor that I love, had moved to a new hospital.  So I ended up with a new doctor.When I first saw him, it was soon after the drip had been slowed down for the third time and it seemed that maybe the symptoms were fading.   I saw him again Monday, as I sat and ran down the list of symptoms, he looked at me and said serum sickness..... I looked at him, and he said it again......serum sickness.  It seemed that because of my size (ok, I admit, I am kinda small)  it's possible that the  two bottles I had been getting each month were too much .  It is interesting, because each time that symptoms hit hard, I would tell Rick it seemed as though my body was trying to rid itself of the drip.

So starting with my August treatment, instead of two bottles, I get one.   I came home and began my internet search as always........when I found articles about serum sickness with IVIG,
I had every symptom.  So here is where the Transformation Information comes in......if you have a rare disease.......educate yourself, listen to your body, be persistent.   Doctors are humans, and remember humans are not perfect.......though we wish they were when it comes to our health.   I know many health care professionals, they know very little about my disease or IVIG treatment.  Rick and I have learned that we have as much responsibility for my health care as anyone, well actually more.

Doctors and health care workers deal with the masses and the most common diseases are the ones that get the funding, the education and the research.  If you have a rare disease......educate yourself and your caregivers, become aware of what takes place in your body, listen to your body, and be persistent.
 
I have been told that I will need IVIG treatments the rest of my life.  I am grateful that because of the treatments the lung infections that have plagued me for many years have lessened......now if we can just stop the dizziness, the nausea and vomiting, the headaches, the fever, the chills......keep your fingers crossed.

Thursday, July 17, 2014

Cause for Gratitude

Success!......I taught both my classes today and drove myself home. I had a couple of moments, but I made it through.  Hopefully, my body has expelled or absorbed the residue of the last treatment and the symptoms are beginning to fade away.

It felt so good to teach, to feel normal........for me, this transformation has been incredible.
I am not 100 percent but that is ok, being on the upswing is good.

The transformation of sick to not as  sick is cause for great celebration......it is cause for intense gratitude.......it is cause for joy.  I know those who have chronic illness who seem to never be grateful for the good days......thus all their days are bad.  You really do have to celebrate the good days......the bad days make themselves known loud and clear.

Tomorrow is Friday, my day to rest and get ready for our weekend gig.  I hope your Friday is full of good surprises, unexpected kisses and many hugs.
Goodnight, Sweet dreams