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!

'Spraying' Space

As you probably already know, I am Raelee's art teacher, and I am loving it!

Raelee and I have been experimenting making pictures with spray paint.  

Yesterday Raelee made these:

The first one was her first try - the second was her second try.  

I think she did great!  The actual pictures do look better in person, but I took them outside with my cell phone - but you can tell how well she did.

We have a few things to figure out, but overall, I think we have got it!  


Supplies Needed:
Cardboard for over spray
Old clothes
White Poster Board
Latex or rubber gloves 
Painters Guide
Old toothbrush
Various pots, lids, bowls that don't matter if you paint them

Spray Paint:
   Red
   White
   Black
   Green
   Yellow
   Orange  
   Blue


Here is how we did it: 

We laid a white poster board on a cardboard outside in a well ventilated area; that way we weren't concerned about the over spray.

We lined up our cans and put the correct color lid by them so we could quickly grab them.

Time to start!

We sprayed three colors in the lower left corner; yellow, green then blue.  All had to be sprayed quickly while wet, one on the other. We did this in a general circle area...

While it was still wet, we took a magazine page and laid it flat on the painted area, gently pressed and then pulled it up.

Next we sprayed orange in the upper right corner, again in a circle, and over that, we quickly sprayed yellow.

While it was still wet, we took a magazine page and laid it flat on the painted area, pressed and gently pulled it up.

Next, we put an upside down butter bowl over the upper right one to make a circle.

On the bottom left one, we laid an old pan, upside down, over the 'earthy' part of the picture to make a round earth.

With the bowl and pan in place, we sprayed the entire poster board with black spray paint.

Next we took white paint, and over the cardboard, we sprayed a toothbrush heavily with paint.  

With the pan and bowl still in place, we then ran our thumb across the toothbrush to make it splash dots (stars) over our entire poster board

Gently remove the pan and bowl.

Next use a paint guide to very lightly spray paint to make the rays.  THAT takes some practice - use the cardboard to get a good idea of what to do before trying this on the poster!  As you can see, we still haven't perfected this - but we only painted two and she did this good!

The one thing we learned from doing this is that you cannot use cheap paint.  We got the all over the nation discount store crap and it did not cover at all.  We splurged and got a good name brand and it was great.

Another thing I would highly recommend is getting a spray can grip - oh my gosh would that make it easier!

Here is a great video to get you started.

We figured out it was easier to paint the under colors, add the circle objects (pan/bowl) then paint black... but experiment like we did!

And this is how good we would like to become!

Well, maybe it will never happen, but we can waste a lot of paint tryin'!  Right papa?


Hope you give this a try and we will be back with our results of our next trial next week!  We are going to add more planets!

But first we have to go garage sale shopping for those old bows, plates, pots and lids... lol... Granny and moma don't want to share theirs!

I Guess You Are Wondering...

I know, it has been forever since I blogged.  I do have my reasons, but just have not felt like sharing.  I love this blog and I feel like when I am depressed it carries through it, so I just don't blog.  However, I miss blogging - but like I said, I have my reasons... and I guess it is time to share.

Right now we are going through a transition time - and we don't yet know what we are transitioning to or how it will affect us.  Let me explain...

I have been ill for a very long time. Most will remember my side pain - since March of 2009 I have suffered with the upper left side hurting.  It started after a very bad bout of food poisoning I got in Korea and though I went to brazzions of Drs, they could not seem to find the source of it.  But I assure you, it bothered me.

My entire life I have been plagued with sinus infections, bronchitis and gut troubles of one form or another.  A few months ago, an ENT (Ears, Nose and Throat) Dr referred me to an allergy clinic.  The Dr he referred me to was an Immunologist.  

From there it went downhill... she has since diagnosed me with some form of immunodeficiency... though she is having trouble narrowing down exactly what form - as it seems to be rare.  However, she does think it is some form of Common Variable Immunodeficiency - specifically a t-cell deficiency - of which she says I have none of most of the t-cells that recognize infection.  Symptoms of this is - get this - sinus and lung infections and gut problems.   It is very difficult to find a link on CVID that explains it in layman's terms... so if you want to take a Google gander, go for it - I just linked to someone trying to explain in simple terms *I* could understand.

Anyway, the diagnosing Dr has referred me to yet another Dr whom I have yet to see, and I will have to have yet another Dr (an internist) to work with (the Dr I have yet to see) to treat me - a general practitioner will not be able to.  The symptoms of what I have appear to be other things and a GP cannot distinguish that, since they are not specialist in immune problems. 

Confused?  Yeah, now you know what I have been trying to wrap my mind around and come to terms with.  They do think this is genetic, but my body was able to cope until the food poisoning - and when that happened it threw in the towel and went on vacation... or something like that... hence the reason my health has been going downhill since 2009.

Right now, in addition to the sinus crap and gut pain, I am suffering with a very painful swelling of the hands and fingers, elbows and now shoulders; so typing, working or doing much of anything is extremely painful.  I am at the point of why bother?  The house is the pits, supper is often pulled out of the freezer and then 'ditto' of freezer foods.  I seldom have the energy to cook, clean, sew, or frankly, give a damn.  I never liked shopping so that is out of the question... I know I have to get over that, and usually I can 'pull up my boot straps' and do just that - but I just do not have it in me anymore.  Frankly, my dear, as I said, I don't give a damn.  And that scares the hello out of me.

Steve is such a patient and wonderful man.  I have no idea how he has tolerated me all these years, but he is so caring, easy going, forgiving and concerned - and I love him for that.  It hurts me to think what I am putting him through, but I know I have no control over it.  My yips of pain are now a common occurrence and though I try to muffle them, they usually happen anyway.  I 'muster' as much as I can, but lately even mustering is a dream.  Now I just shake my head and apologize - I guess for even living - because I certainly seem to have no control over this vacationing body. I at least wish it had vacationed some place less painful... and much less expensive.  Steve would be a multimillionaire if he hadn't had to pay all my medical bills that he has had to pay since we married...and we seem to be getting deeper into the medical oblivion. 

I *need* and *want* to get a job, but I have to feel like getting out of the recliner first...and instead I just keep sinking deeper into it.

Tomorrow, I made an appointment with a GP *gasp* and am going in to see if I can get something for depression/anxiety.  Maybe that will help until I can get into the other specialist. Not sure what is going on there... I just got a call from even a different Dr who says they will see me on Halloween day.  Skeery.  Maybe this Dr is a good thing.  At this point all I can do is roll my eyes.


So I patiently wait... and yes, worry.  There is no cure for an immune deficiency - and only temporary fixes like antibiotics to try to stave off the infections.  Ultimately, it will do me in I guess... or at least that is what they say.  I better find those boot straps!

And that about catches you up on me.  I know, a pity party and I am sorry for that.  I guess I needed to share.  Maybe now I can just move on.  Or better yet, curl up in my recliner now that I have posted on my blog.  Finally.  Promise I will not be so deep and dark next time...

Fall is here.  I am freezing!  Colors should be coming soon - right?  Moving on...