Then Came the Ice

On December 22, 2013 we had an ice storm that covered our world in a thin layer of crystal clear ice.  It was beautiful to look at, but thankfully left most everyone safe and sound.  

Of course, I took my camera out to enjoy the beauty:

I love the shot of our frozen flag in front of the house:

 

I don't know why I love this shot, too, but I do.  The trees look lacy and Cadence is content:

I am enjoying life in Oklahoma... always a new beauty to see... but isn't it that way everywhere?  Louisiana... Singapore... yes, my camera and I can share the beauty we see...

Just wait until you see what comes next!

Battening Down The Hatches Today...

'Cause the weather station says it might get cold tomorrow... 

Might.

Thankfully this is wind chill factors they have pictured.



If it is gonna be this cold -

SEND SNOW!

That is all

except BRRRrrrrr!! 


Edited to add - YES!!  We got snow!

I am smiling as I batten down the hatches!

Mike and Laura Came to Visit!

One of the blogs I missed sharing while I was not posting...

Steve has known Mike for about 42-43 years.  Those guys have been through a lot together, you know, growing up years and all - and when they finally did grow up, (thank God THAT happened!) Mike married Laura, and Steve married me.

Mike was best man at our wedding - and he only had 6 hours notice and a two hour drive!

Here we all are 37 years later!

Mike and Laura live in Oklahoma City. They came to visit on September 1st - I was too sick during the visit to be much company, but they were great sports and visited with Steve.  I had an awful reaction to the Pneumonia Vaccine.  My temp was over 103!

We took it easy for the most part as I was only about 30%, but we did get to go to the other side of our property - the about 7 acres of wooded area that we have as a 4 wheeler track.  It is usually a ton of fun to ride, but getting Laura over there was the best part the time!


My darned video won't load!!  :-(

Oh well, we had a super weekend or should this say weak end (?) together... I was sooo weak and sick.  I sure hope they come back for a visit where we can play again!

108 Pounds...

Certainly that is not ME!  That would be wishful thinking... lol...

I always knew my dad was very thin... 

But I had no idea just how thin he was until I got his medical records today. 

He was 5'9", and he weighed 108 pounds.  Probably soaking wet at that. 

I think at one time he might have weighed as much as 130, but I doubt he ever weighed much more than that.  I remember hugging him and being very concerned that all I felt was ribs - and that was when I was a young child.

I spent the day trying to gather all of my medical records for Bethesda.  My step-mom and her hubby sent dad's medical records and I received them today as well.  I have one huge pile of records to scan/copy and send to Bethesda... they are going to be floored at the amount of records they will receive.

Looking through his medical records, I do believe there is a really good chance that he had what I do; Idiopathic CD4+ Lymphocytopenia. From here on out I will call it ICL so I don't bore you with the whole big word thing - but, yes, I have memorized it and learned to say it.  He ultimately died of Mycobacterium Avium Intracellular (MAI), but he acquired it because of his weakened immune system.  Last month, my Dr started me on a weekly regimen of antibiotics to keep me from getting MAI... coincidence?  I think not.  It also says in the records that he had nodules on his lymph nodes, another symptom of ICL.  Adding all of those together, it seems he may have had it before it was discovered.  What a trip that Carole had his medical records!  Thank you, Carole!  :-)

Guess what I will be doing this weekend?  Scanning/copying medical records.  Thankfully The National Institute of Health (NIH) (Bethesda) gave me a UPS number to use so they will pay for the shipping.  Good thing - it will be as thick as a brick!

Off to bed now - been a long day after a long night.  I had nightmares all night long.  So thankful I have a hubby that wakes me and holds me until all is well again.

Night all.

Snow, Snow, and Bethesda!

First off, I want to share some news!  Bethesda, MD called today from the National Institute of Health and asked a brazillion questions and then asked me to send some of my medical records...  I just happen to have access to my dads as well (thank you, mom Carole!) and will be sending them as well at their request.  They think there will be a very good chance I will accepted at that clinical and I will make number 45 in the study.  They have been doing the clinical for 2 years and that is all the people they can find... 44 plus me.

She said my disease is extremely rare and there are very few symptoms that are common in the patients they are studying.  She told me some of the things others are suffering with and I will just say cancer is high and crypto something infection is higher.  I have neither, but she said this is side effects from having the low CD4+ count.  I told her I am hanging on to my CD4's as tight as I can and feeding them fertility pills!  Lol...

So that is my exciting news for the day.  Yes, exciting, because someone is interested in trying to help me!  I am going to stick with that and move on to snow pics!


So here was the post you were supposed to get:  I am going to share a few more pics of the snow today - I LOVE snow... and yes, SEND SNOW!  There ya go!  I said it!

One of my favorites... Steph's swing by the pond:

And another favorite - do you see someone special here?

No more snow pics until someone sends me more snow, k?  Lol...

So You Missed Our Snow?

In all my lack of blogging, you have missed a lot!  Well, 6 months of a lot!  On December 6th we got snow.  Man, did we get SNOW!  We actually only got about 4" of snow, but we had about a half inch of sleet before the snow.  

 This is what Steph's house looked like:

 And this is what we looked like:

 In case you cannot tell, that is Steph and her dad...

This is Steph and I...

There were some critters that were not impressed... 

This chick was not having fun... 

Chelsea was not having fun... 

Buster was really not having fun... he had 'boy' problems in most of the snowy area...

But we pulled out the 4-wheeler and were determined to have fun!

Raelee's face got a bit... cold... yes, that was the snow blowing on her face and catching on her eyelashes and around her mouth!

We passed the gunieas who were most assuredly not having fun...

And Chip the Roo was trying to decide if he was having fun...

But he wasn't, so Raelee took him home;

Where the chickens were having fun!

And we all set about having more fun at Stephs!

Happy New Year!

I haven't blogged in a very long time... Basically for over a half a year I have left my blog unattended.  Guess what?  

That is changing this year! 

I have told you that I wasn't ready to share yet, but now I am.  There have  been many reasons for this, but the biggest one is my lack of health.  Let's make a long story short;  the doctors have been testing me, referring me, and testing me some more.  I would have thought I had given more blood that I have to give, but they kept taking more!  Finally, they have a diagnosis, and it isn't good - but I really don't know what that means... I will try to explain.

I have an extremely rare disease called Idiopathic CD4+ Lymphocytopenia.  There are literally dozens of people that have it - not hundreds.  I am happy to say that after dozens of tests that I positively do not have AIDS/HIV, but I do have something that AIDS/HIV patients suffer with - a serious lack of t-cells in my body.  The t-cells that I am missing would recognize dangers like flu, colds, viruses, infections, cancers and such in my body - and they would tell the other cells to fight those sickly germs off!  Instead, because of my lack of t-cells, those nasty little germs just sit in my body and ravage it and nothing tells them to get busy.  I envision them all sitting back having cocktails... 

There are so few people with Idiopathic CD4+ Lymphocytopenia that the medical community knows very little about it.  There is no cure, no help, there are no support groups, no medical trials and only one clinical trail going on.  It is in Bethesda, Maryland.  They are only taking all of our tests and symptoms in a pile and trying to find a common denominator - and yes, I have applied to that clinical.  But they are not giving trials of medicines or hope for cures...

Reading about the disease scares the garbage out of me.  I find hope in some articles:  This article says "In contrast to the CD4+ cell depletion caused by HIV, patients with idiopathic CD4+ Lymphocytopenia generally have a good prognosis. The decline in the CD4+ T-cells in patients with ICL is generally slower than that seen in HIV-infected patients."   

And then the realization sets in:  My CD4+ cannot deplete anymore, because my CD4+ count is at at 64. 

Critical is less than 300.  :-(

I try to research my diagnosis, but all the medical terms are way over my head.  I get morsels of information that give me clues; I have to worry about dying from some stupid little infection, that a lack of t-cells are not life sustaining (thankfully, I have only read that in a few places and surely they are not talking about MY t-cells, right?)  I have read that they can regenerate, then my Dr says I have to HAVE t-cells to regenerate - and she tells me I don't and they won't.  

One of my Drs said "live a long life" when Steve asked him what long term that meant to us... I am wondering where he sees that, but I am waiting for it to happen!

I asked about wearing a mask to help with germs. Drs say that I would only be protecting others from getting what I have - and I am not contagious.  Germs are everywhere; in breathing, touching, through pores, tears...  yada yada... so a mask is out.

I asked about diet... again, my Dr says I have to have t-cells to regenerate - and I don't. But, it cannot hurt, right?

My Drs both said it is genetic - aunts, uncles, cousins, are you listening?  They are fairly certain that my father died from the same diseases; an infection that he caught in 1993 - one that commonly attacks people with low t-cells is what killed him.  If you are related to me, you need to know that if your lymphocytes are low, you need the Dr to test the subsets... the t-cells specifically.  All of my immunoglobulins were normal - that is very important for them to know.

With all of the research that I could not find, I finally thought that since my symptoms are similar to those with HIV, (remember, I don't have HIV) I should go to an AIDS site and read there.  That was definitely not a good idea.  Scared the bejeebers out of me when I saw where my count was!! 

It is an immunity disease, I know that much.  Not AUTO immune disease... However, IgIV's will not help me the Drs have said.  That was my one hope... but hearing the ones that have to take IgIV's and dealing with all the side effects, I don't know that I would want them anyway.  

So I don't know what this diagnosis means for me other than both Drs have said it is very serious and both have released me from their care - there is nothing they can do except treat me immediately for infections as they come up - and they will do that.

Other than that, they can be of no help.

Apparently, there is nothing I can do either.

 EXCEPT live life - and BLOG!

And I am going to keep up with it this year!  I LOVE blogging and miss the heck out of it.  

So here my list of important list of things I gotta do in 2014:

1   Blog my life (sorry if it bores you... we live on a farm and it is pretty relaxed here)
2.  Get digital pictures sorted and backed up twice 
     (most are backed up, I just need to really organize).
3.  Get all of my genealogy scanned and sorted
4.  Share the genealogy with all of our family
5.  SCRAPBOOK! those printed pictures and important events
6.  Make quilts/sew/laugh with friends
7.  Eat healthier
8.  Vacation more
9.  Play more
10. Live healthy
11. Hold on to those 64 little t-cells that I DO have!!

And plan my daily walk with God; studying His word, His life plan for me and reading His story again and again... and finding hope.  

Because in Him, all things are possible.

Happy New Year, folks!  

I am BACK!