Sunday, June 29, 2014

Saturday, June 28, 2014

Good Morning from the Chicken Factory

Today is not a good day. Some days I have are ok, others are not.  Today is not.  

My hands are swollen and ache like the dickens, my left arm is numb with a deep bone ache, my left leg is the same, my head is throbbing, by entire body just aches through and through... and my eyes are so dry they won't stay open.

On a scale of 1-10, I am hurting at about a 7.  Today will be a "just get through it day".  

This is what helps me just get through it... enjoying the chicken chatter... I love these birds.  Amazingly enough, they help me relax.  They follow me into the garden, chattering while they wait for me to uncover a worm... they get in my way when I am pulling weeds... me in the garden, surrounded by 21 chickens all looking for the juiciest bug... sometimes it is difficult - they are literally right in front of me waiting... all watching every blade of grass I pull, every chunk of dirt that falls... 

Yeah, they make me smile.

So good morning from the Chicken Factory...   :-)

I am going back to bed.  This day might get better if I get up on the other side of the bed... 

Gonna give it my best shot.

Motrin is my friend.

Friday, June 27, 2014

Happy Birthday, Stephenie!

Yeah, I know, a day late, but I hope you had a wonderful 36th birthday.  

Yeah, I also know it coulda been better - but you are here to chat about it and that is what counts.

36 years ago, we had a wonderful 9 lb 6 oz little girl.  

Here you are at 4 days old... 

That was just about the time we found out you had supraventricular tachycardia.  Your heart was racing at 317 beats a minute...  We almost lost you then... but we didn't. 

Many times over the next 16 years, it was close... oh so close.  We could have lost you so many times, but we didn't.

When you were 16, you collapsed on the band field in the middle of a performance at a football game... we didn't lose you then either... but we could have.  We got your heart converted back to a normal rhythm and went home.

A day or so later, we took you to the hospital in New Orleans just as the ambulance attendants told us to do and showed them a 'strip' of EKG.  Your Dr took one look at it and took you back to try to duplicate it.  You 'converted', had trouble 'reverting' and finally, they told us you were safe, but very, very sick.  The Drs said that what you had could have caused 'sudden death' at any time in your life, but it hadn't.

Surgery lasted hours and hours and hours.  So many hours Drs were taking shifts; coming out and giving us results as their shift ended.  It took forever to find the electrical pathway that could have killed you many times over... but it didn't.

You came through the surgery like a champ, but you never wanted to go through that again!  Thankfully, though your heart isn't 'fixed', it isn't "sudden death" like the Drs said it was before the surgery.

A few weeks ago, you took an awful fall off of a horse.  You dislocated your arm, fractured it several times, chipped the elbow, and tore the cartilage in it.  Surgery repaired all they could; ligaments and tendons were severed, bone chips removed, cartilage cleaned up... Yes, these are awful injuries; they will likely change your life.  But falling off of a horse that is half Clydesdale - yeah, that could have killed you.  But it didn't.

I am going to tell you something about yourself.  You are a survivor.  You could have died so many times; physically, from heart 'beats', from 'heartbreaks', from scares, life changes... from life... but you didn't!  You have certainly been through some tough times, but you have BEEN THROUGH those tough times!  What makes you think you won't get through this as well? 

You came from a family of fighters. YOU are a fighter!

Don't let this get you down.  It's gonna be tough.  It is going to take time.  It won't be easy... 


You are loved.  You are cherished.

You are strong-willed.  You are determined.  You are strong.

You are one hell of a woman.  

You can do anything!

Home school your daughter?  You are doing it!

Move half way across the country and start a farm?  You did it!

Make soap?  You rocked it!

Anything you sent your mind to, you DO it!

What in the world makes you think you won't get through this with flying colors?

LOOK at you!  Look at who is behind you!

You could have gotten killed! 

But you didn't.  

You are still here blessing us with your smile; 36 years of those wonderful smiles.  

We love you.

You are strong and you can get through this.

We will go through this with you.

Together - just as we always have.

We will ALL be there with you.

You put out the work and we will cheer you on... encourage you... just as we always have.

You will get through this.

We are just so thankful you are here to get through this.

I love you.  We love you.  We all love you.

Happy, happy birthday, sweetie.

Thursday, June 26, 2014

Snowballs from Hell

In August of last year, I was in the process of being diagnosed with a very serious blood disorder.  October 31st, 2014 was the final diagnosis... I had Idiopathic CD4+ Lymphocytopenia - ICL for short.  Yeah, you know that...

After much searching I have finally found a Dr that will work with me.  He cannot cure the ICL, but he can help me with other things.  He understands the seriousness of it and the fact that we have to act with urgency when I get any infection.  He understands a 'cold gone bad' could kill me.  We all get infections, right?  My body cannot recognize I have one, so we have to stay on top of any infection I get.  He gets it.

This Dr was looking at my bloodwork and asked if I had lupus.  "No..."  "Well, it sure looks like you have lupus..."  I came home thinking I had found a quack and immediately e-mailed NIH in Bethesda to tell them I had found a new Dr and he suspected lupus, was this possible?  "Not only possible but likely..."  

Really??  And you were going to tell me this WHEN?  

"Oh, and by the way, your biopsy came back positive for Sarcoidosis as well."

Snowballs from hell...

I look normal.  I "don't look sick" - haven't we all heard that?  I am sick.  I don't have the energy to get out of my own way.  I cannot fight through all the crap anymore.  I don't have the drive to drive myself to the grocery store. I have about 2 good hours in a day, then the fatigue overwhelms me and I just want to crawl into a hole and sleep the rest of the day away.  

I try to fight through it - honestly I do.  I cannot explain the exhaustion I feel.  I cannot explain the constant ache to the burning bone I feel.  I cannot explain the hopelessness that comes over me when I don't have the energy to look at a sunset. 

No, I am not depressed.  I am sick.

And what makes me sicker is thinking back at all the Drs that let me down.  I have had low lymphocytes for 12+ years that we can prove.  That was from my yearly comprehensive physicals.  My lymphocytes were low on all of those!  Had a competent Dr seen that, they would have questioned it and we would have found the ICL before the 'critical' stage.  Critical meaning they can no longer help me.  My foundation is gone.  There is no building with no foundation.

I  used to have constant yeast infections... had they questioned that, they would have found lymphocyte issues.  I quit getting those and started getting thrush.  Had they questioned that, they would have found my t-cells had dropped to a critical level - those are the signs.  Constant yeast implicates low t-cells, thrush implicates a drop in t-cells.  Constant sinus infections... yeah, immune problems.  Not getting well regardless of what I did until I got an antibiotic?  Immune problems.  6 weeks with a cold... immune problems.  12 years with a sinus infection?  Immune problems.

I had a Dr that said my 'asthma' was in the small cells in my lungs and said "it was very odd"...  Had he questioned that and run more tests, he would have found the answer was the sarcoidosis.  I had pleurisy for over a year.  Yeah, that was a sign as well.

Gut problems.  Immune deficiencies... 

Many, many Drs dropped the ball.  Now they cannot help me.  *I* am not a Dr... I couldn't catch it - I am not trained to.

People who see me just see me - they don't see the scared shitless me - the one who has no idea how to turn this around.  The one who has been told over and over "there IS no turning this around."   Read on AIDS and CD4 counts - in essence that is what I have - not really, but it is what I have to look at to get a glimpse of what to expect.  I DON'T HAVE AIDS and I don't have HIV, but what I have is similar.  Read on down to where the CD 4 count is - and then see what it says when it is 41; "all of the above" - then that. There I am, at the very bottom of "all of that".  PLUS apparently I have lupus AND sarcoidosis.

Again, I am NOT CONTAGIOUS.  If I was, half the world would have it - and there are only 45 of us known in the US. 

Did I say this Dr suspects that the Sufla reaction I had in October was actually what started a lupus flare and is what is causing my hands and feet to be numb and my bones to burn? 

I am HIV negative; but with a CD4 count of 41, the prognosis is not good.  Add the other crap that is snowballing and... yeah, well, that is all I am going to say about that... pity party over.

Anyhoo, yesterday, I was talking to Steve about how to manage everything; my fatigue, how to use less 'spoons' to save for the things I really want to do and forget the stuff that really doesn't matter.  I don't have the energy to do it all and I cannot muster the energy to fight through to get it all done.  So, I will have to choose my 'spoons' more wisely; I am going to rest when the body requires it and not feel guilty.  I am going to blog, sew, watch tv, garden, scrap and visit with my friends and family that 'get it' and do the stuff that I really enjoy and when I feel like doing the other stuff, I will do it.

In the meantime, Steve is seriously considering retiring.  I need him at home.  He needs to be home to help out.  We need each other to get through this.  It is tough on us.  We have our dream home; a house in the country and lots of land to care for.  We have critters and chores.  The reality is this is not easy.  I don't look sick, but we see just how sick I really am.  We know.  Others have no clue.

And we are hoping this new Dr can help whittle through some things so I can get through the lupus flare (if that is what it really is) and get me to feeling better.  I need to feel better.  I need to be able to enjoy my life...

'Cause I love those sunsets.

The snowballs keep coming and I needed to vent.  

Tomorrow, I update you on Stephenie.

Saturday, June 14, 2014

She's a Grand 'Ol Flag!

Last Friday, I stayed out until 2am sewing with my quilt group.  Our leader, Michele, told us to bring red, whit and blue fabric for a project.  Two hours later, I had built this:

Isn't it awesome ?

I learned a new technique and it was fun - and super easy!

I still have to quilt and bind it, but I just had to share.

Off to the lake with Uncle Weldon and mother... Love that we are close to our family after 35 years!

Wednesday, June 11, 2014

Broken :-(

I have written this darned post 3 times in 3 days!  I have no earthly idea what is going on, but I am trying again... time number 4!  Blogger 'save' is broken.  

And worse than that... 

Stephenie is broken.  

She went horse back riding on Sunday and fell off her horse, Clyde.  He was hot and sweaty, she is inexperienced and he was being difficult.  One thing led to another, the saddle slid and down she went.  As you know, Clyde is HUGE and she fell onto concrete - a long way down to a very hard surface.

She is ok, but it will take a lot of healing.  She has a bruised shoulder, bruised hip and very broken arm.  She dislocated it and twisted it backwards at the elbow; it was nasty.  Today, she went back in to an ortho Dr who had done an MRI.  He said she will need to see a surgeon for her elbow on Monday.  She has two fractures, one chip and ALL her ligaments and tendons are severed - as in severed in half.  That means there is nothing holding the bottom half of the arm to the top half of the arm.

I can make this a real long story, but I won't.  I will just tell you that the rest of the story involved being very far (extremely) out in the country, ambulance and emergency vehicles trying to find us, 2 terrified children, 4 adults (one whom was very injured), 2 trucks with 2 horse trailers, one motorcycle, 4 horses and one unknown pit bull - who thank God was friendly, just very curious - and did I say we were very, very far out in the country?

Two of the adults had to drive horse trailers back and unload horses; can't load them in trailers and leave them...  One adult had to drive a Harley; can't leave the Harley...  And one adult had to ride in an ambulance 30 miles to the hospital - by herself.  The horse trailers were going 20 miles in the opposite direction.  

Oh my gosh is it an awful feeling to have your daughter all alone, injured, riding off into the sunset, knowing there is no way you can follow - 

Nearly an hour and a half later we enter the ER.  So very long... 

No moma wants to see her daughter like this:

And no moma wants to see this x-ray of their daughter's arm (after relocation):

And one day later, no mom wants to see another x-ray of her daughter's arm looking like this:

This has been a rough few days for her.  Todd came in and has taken over her care.  She cannot do anything at all - there is no stabilization in her arm whatsoever.  She is in extreme pain.

But in time she will heal.

And that is what counts.

Thank God time will make her better.  She is, after all, our 'baby girl'.

Thursday, June 5, 2014

Graduation Day

Not for the big (real) kids of course, but for the big chicks and for the little chicks!

We have a 'big' house and a 'little' house...  

We had the big chicks in the big house, the middle chicks in the little house and the little chicks in the big house but they were in a little brooder.  

Got that?

Of course you did... now let's move on...

When you buy new chicks, they all have to be separated from the other chicks. You put them in a brooder to stay warm, safe and make sure they are healthy.  However, they outgrow that brooder rather quickly... say in two weeks.  

So, we needed to move them to the little house to grow some more.  However, we have the middle chicks in the little house.  Those middle chicks were the little chicks two weeks ago, but they have grown to the middle chicks now and they needed to be moved to the big house so the little chicks can go to the little house.  

I hope you are keeping up with this.

We took the middle chicks from the little house and put them in the big house.  

Here starts the state of confusion.  No one knows where they were supposed to be!

One went up high.  Others are determined to stay with mom:

There were the chicken portrait imposters:

 And did you notice mom's 'bottom'?  Yeah, it isn't gold and white... just sayin'...

Total chaos!  No one knew what to do!

Then things started settling down... well, after a few flutters:

And all became quiet in the 'big house':

So we took the little chicks out of the brooder from the big house and put them in the little house.  

Quite a scary time for them:

But soon they settled in for the long haul:

In a few days, things will be 'normal' again; and they will be the middle chicks in the little house needing to be moved to the big house.

Graduation day is a chore on the farm.  Getting everyone where they belong, making sure the little chicks don't ruffle the big chicks feathers, making sure all the proper food is where it needs to be; lots of fluttering, feathers flying, chicks going this way and that way, perfectly sane adults turn into animated characters crawling under coops, around coops, over coops - running like a blazing idiots after a wayward chick... yeah, fun stuffs.  But finally we get it all together, the chickens where they belong and things settle down.

And then the next morning, I wake to find this:


The little chicks broke out of the little house!  They were with the middle chicks and the big chicks hanging around outside the big house.

I give up.  

Chicken farmers live in a state of confusion.

Chickens seem to like it that way.

Sunday, June 1, 2014

11 Years of Punkin'!

Eleven years ago today, our first (and only) granddaughter was born:

She has given us so many reasons to smile and I am going to share 11 years of Raelee!

10 years ago, she started walking:

And she was so stinkin' cute!

9 years ago

8 years ago:

7 years ago:

6 years ago:

5 years ago:

Couldn't resist this one:

4 years ago:

3 years ago:

2 years ago:

1 Year ago:

Happy 11th birthday, Raelee!  Granny and papa love you, forever and for always!

(And so does grandma!)  This picture was taken today at her party!

Punkin' is 11!!

Singapore Memory Project