"This illness is to fatigue,
what a match is to a nuclear bomb.
It's an absurd mischaracterization!"
~Laura Hillenbrand

November 27, 2008

It's Tradition!

It started in 2003. I had been sick for over a year and then had a hysterectomy just weeks before Thanksgiving. I was stuck on the couch while the family took over the job of cooking Thanksgiving dinner.

While the preparations were going on, Chris sat down and we started holding the camera up and taking pictures sitting together. It was a fun for us both and It helped me keep my mind of not being in the kitchen.

We've done it every Thanksgiving since!!

This year, was the first year since 2003 that I did anything more than make the gravy (my family says I'm the only one who can make the gravy) :-) But Chris and I found a few moments to keep up our yearly tradition - though, it's amazing to see how old we've both gotten in 5 years!!!

Today, I was very thankful for my family. Very Very Thankful for each one of them - Bill, and Marie, and Ellen and Chris!

Hope you all had a wonderful Thanksgiving too!

November 26, 2008


Well, I was nervous, but last night I finally completed my CPAP fitting and sleep study.

I was scheduled last Thursday and ended up really sick, so it got postponed to last night. I was fitted with this very high tech, quiet and newest of the new CPAP masks! I am so thankful that I landed in such a quality place for Sleep help.

Not only is the Study center comfortable - with "Sleep Number" beds (yes I played around with the numbers again LOL) but they have a qualified technician who helped me pick the mask - will be available for questions and help without cost, and will automatically send me what I need to keep my machine clean and running well!

So... for the next four to six weeks.. I will be wearing this - every night.

Part of me feels disappointed - I had hoped my dysautonomia wouldn't come to this. But on the other hand, God has so richly blessed me that I can't be discontented and worry about the future.

So... as I am writing this blog very late - as a way of CPAP avoidance... my very tired eyes say "It's time". So goodnight - and may we all have a great night's sleep!

(and NO!!! You will not be seeing a picture of me wearing this! LOL)

November 18, 2008

Fortunately ... Unfortunately

Do you remember that children's book "Fortunately, Unfortunately" ? This little boy goes through his day with "Fortunately" - a good thing.... "unfortunately"... a bad thing. I don't remember the whole story, but I do remember...

Unfortunately, I had to jump out of the plane.... Fortunately, I had on a parachute... Unfortunately, it had a hole in it.....

And on an on!

These past two weeks I've been living this... let me give you a few examples!

Fortunately - the doctor I saw in NY had one more idea to help with my severe fatigue.
Unfortunately - it meant I had to give myself a shot everyday.

Fortunately - it doesn't really hurt and I can do it!
Unfortunately - my whole family runs when they see me preparing for the next injection.

Fortunately - IT IS WORKING!!!! Whoooo Hoooo!!!! I've had the best week and half I've had in years! I'm not healed, but my brain is more awake, I feel more like myself and I even have less fatigue!
Unfortunately - I had to have a sleep study in the middle of that time - and I sure didn't sleep well... which has thrown me backwards a bit.

Fortunately - The sleep center is such a high quality one, I got to sleep on a "Sleep Number" bed and it was as comfortable as possible with wires glued all over your head and face and things up your nose and on your finger :-) (yes... I did play with the numbers LOL)
Unfortunately - The sleep study showed that I have sleep apnea - a common development in dysautonomia.

Fortunately - It is very MILD sleep apnea.
Unfortunately - I have to try a CPAP mask - and I HATE things that go over my nose.

Fortunately - I have a daughter who works with ordering home health care items and she showed me that there are some great options that only go IN your nose - not over it!
Unfortunately - I have to go back this week for another sleep study to calibrate the CPAP. (more guk in my hair)

Fortunately - It's not til later this week - so I've had a lot of fun painting this week!!!
Unfortunately - I had a sudden and severe flare of my gasteoparesis... the delayed gastric emptying that causes stomach pain and nausea.

Fortunately - I have medications to deal with this.
Unfortunately - it's a really bad one and the meds are only lessening the pain and nausea, NOT taking them away.

Fortunately - Just as I was tempted to despair - I received a very special gift from one of my husband's co-workers. I was reminded that God remembers me and cares about me even when life takes it's down turns.

"Can a mother forget the baby at her breast and have no compassion on the child she has borne? Though she may forget, I will not forget you!
See, I have engraved you on the palms of my hands;
your walls are ever before me.
~Isaiah 49:15-16

November 8, 2008

Pondering Lifelong Dreams

(c) M Pruitt 2008

Autumn Song by Sarojini Naidu
Like a joy on the heart of a sorrow,
The sunset hangs on a cloud;
A golden storm of glittering sheaves,
Of fair and frail and fluttering leaves,
The wild wind blows in a cloud.

Hark to a voice that is calling
To my heart in the voice of the wind:
My heart is weary and sad and alone,
For its dreams like the fluttering leaves have gone,
And why should I stay behind?

I found this poem about Autumn and I loved the first verse. It seemed to describe the windy fluttering of the colorful leaves I was trying to depict in this, my newest painting.

But then, as I read the second verse, I was launched into deep thought. There are many times my heart is weary and sad and all alone because my dreams have blown away - like the autumn leaves.

And why should I stay behind? Ah... that's the challenging and intriguing part of this poem... what is there to stay behind for? What is there to persevere for?

Some would say - flee... escape... winter is coming!!!!

But I say - No! After winter comes spring. Death of a dream is only the beginning to new life!

With the Autumn winds blowing away all of my dreams, it makes room for the blossoming of new dreams. I have a choice... will I cling to the old dreams? Then there is nothing to stay for. Will I embrace the new dreams? Embrace new ways, new thoughts, new relationships... embrace LIFE!

I choose to persevere, discover and embrace new dreams. And if those are blown away, I know that they too will be replaced with new.

Do you think this is why God made Autumn so colorful and beautiful? So that we wouldn't despair over winter and loss, but instead, would be reminded through the beauty of Autumn, that even when our dreams are blown away, new dreams will begin to bud?

November 4, 2008

I voted!

I voted today... how about you?

I filled out my mail in ballot - but to tell you the truth, I really like going in to the booth to vote! But, with the lack of physical energy I've been having, it was a lot easier to take my time and fill out my mail-in ballot.

But, as, as it often goes in my life, I didn't get it ready in time to mail. So today Bill and I both dropped off our ballots. All it required was a short walk into the Community center and I proudly put on my "I Voted" sticker!

It was fun seeing so many people out voting - and even with that quick drop off, we ran in to several friends!

So if you haven't voted yet - go do it! If can get it done you can! :-)