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... 

Good Morning... My Brother's House Burned Down

I have not forgotten you.  I am still not well and have had a lot of big things happen and have been taking oodles of medical tests...  I have given so much blood this last month I think I am at the point I need to get blood to give blood!  Anyhoo it all caught up with me (mentally).  With me not feeling well, I just cannot post and make any reason right now.  I will be back.  

Among the other things that have happened, my brother's house burned to the ground.  They lost nearly everything.  I am so very sick with diverticulitis, blood problems and sinusitis that I can't help, which makes me feel so damned guilty...

Keep us all in your prayers.

I will be back as soon as I wrap my mind around everything and can find my smiley place again... 

It'll happen.

Worst Hostess of the Year Award Recipient - Me! :-(

Guess you figured it out, eh? I have been sick for 2 weeks now!  Thank God I am on the road to recovery finally.  It'll take me a bit to you catch up, but I will do my best!


We had some friends come over this past weekend.  I was so sick Saturday I was no fun - I had a bad reaction from a pneumonia shot, complete with high fever and soreness.  Laura and Mike were such good sports about it, they had left before the reaction started and got here just as my temperature spiked to 102.8! 

Thank goodness we got through it - I just stayed in my recliner under the covers all day and visited.  Sunday, I woke feeling better, so the guys went out for a bike ride:

Laura and I hopped on the 4-wheelers and took them out on the back 10 for a spin:

I  think she enjoyed herself!  I tried to upload a picture of her going over the ditch to the back property, but blogger wouldn't allow that... drats!  It was cute!


Many moons ago, when Steve and I were young, Steve called Mike (far left) and asked if he wanted to be best man in our wedding.  Mike said "Sure! When is the date?" 

Steve answer; "Tonight!"

Can you imagine that phone call?  Mike had to take off of work just after lunch and race two hours to where we were getting married.  No there were no real plans; just $50 bucks, a rose purchased at the flower shop and a ring a friend's mom had made... and a preacher.
We have been married  36 years now!  Guess you don't need a fancy wedding...


Laura and I also went to Raelee's 4-H meeting,  We got to see how she holds her chicken "like a pizza'!

That is one spoiled chicken!  Yes, that chicken is alive - and her name is Margaret. 

Thanks Mike and Laura for coming to visit. I accept the 'Worst Hostess of the Year Award' with 'precious moments' eyes... I am blessed for the precious time you spent with us and even those moments I was so sick, it meant the world that you were here with us.  Come back!  I promise next time to wear you out and show you what our life is really like!

Ugh...

Diverticulitis sucks!

Still sick.

Sorry, dear blog.  

Be back soon - I hope.

Random picture...

Fruit Sticker Fun

I am really feeling awful right now, but I am not going to abandon my blog.  Here is a random thought; have you ever looked at where your fruit came from?

Check out the stickers on each piece of fruit and take note:

It will probably surprise you!  Yeah, I am one of those random people that notices stuff like that... lol...

Going to the Dr today - hopefully I will be able to post again soon.

See ya!