This Girl...

Just makes me smile:

She makes me proud:

She makes stress:

And laugh... 

And roll my eyes... 

Didja see the necklace?  *shudder*


But I smile at every adventure she takes us on.

She is my nearby happy girl.

Don't Eat THAT! Or THIS...

I have Idiopathic CD4+ Lymphocytopenia (ICL).  All of my friends and family know that.  But Immunodeficiency problems are not entirely uncommon - the medical community is just realizing they need to be looking at the immune system more.  My immunodeficiency is rare, but not CVID, SCID and so many others.  I want to educate people on Immunodeficiency so one day a week (Wednesdays) I will try to tell you a bit about it.  Today, because ICL affects me, I am going to elaborate on what *I* deal with on a day to day basis.

Immunodeficiency means part of your immune system is broken.  Your immune system is largely what causes your blood work to register what is right and what is wrong.  If your immune system is broken it is often difficult for the medical professional to look at blood work and get a good 'feel' of what is going on.  So blood work is definitely a problem with me.  About the only thing that is nearly always accurate is my t-cell count.  And it keeps dropping.  Nuff about that for now...  

If a medical person is not knowledgable about immunodeficiency, then you have to be the one to explain what is going on to them, AND you have to hope they listen and don't take the Dr 'I know more than you do' stance.  

Diet. Did you know an immunocompromised person has to really watch what they eat?  HERE is a good general idea of what we have to pay attention to.  

It gets worse!  The link below is one my Dr referred me to.  Because I basically have no immune system, it is like I have had chemo (I haven't) (but chemo drastically compromises the immune system), so the more in-depth diet I have to follow looks more like THIS.

A few things that I have to watch:

I shouldn't eat at a buffet.

I shouldn't eat jalapeno cheese because peppers in it is raw.

I shouldn't eat yogurt with live cultures.

No more over easy eggs for me.

Bacon has to be well cooked.  As in nearly burned.

Too many things to mention, but you get the idea.  Food is a real problem for us.  We have to be sure every reasonable thing has been done to keep germs away from it.

Now think about eating out... 

Is the table clean?
Are the dishes clean?
How about the silverware?

Salt & Pepper shakers?
Parmesan cheese?  All the things sitting on the tables... yeah, don't touch them.

God help us if there is a problem (illness, less than sanitary conditions, etc) with the cooks... 

I was sitting in Pizza Hut waiting on my personal pan pizza and a young child reached over, grabbed the Parmesan cheese container on his table and LICKED THE TOP!  His mom fussed him, wiped it off with a napkin and put it back.  *sigh*

I usually ask for "to go" packets if I need one of the table condiments.  How many hands have touched all of them?

I shouldn't take probiotics - live good bacteria... but my body doesn't know good from bad... (try this when you are on 24/7 antibiotics)

Immunizations?  Guess what?  I have no immune system so immunizations are useless for me - you have to have an immune system to build an immunity, right?  Think that one though.  Tetanus?  Flu?  Pneumonia?  Hepatitis?  I had all the overseas immunizations and the Dr tested me for them less than 5 years into them.  I did not even show immunity to one of them.  She gave me 3 more and in 3 months, more blood work.  It was like I had never had them.

It gets better.  Any immunizationw with a live virus is off limits to me.  Better than that, I can't be AROUND anyone that has HAD a live virus immunization for 3 weeks.  Now how the heck am I supposed to be privy to that information?

I am not the only person with ICL / HIV Negative - there are less than 100 of us known to the National Institute of Health.  We are not contagious.  There is very little known about why we have this but they suspect it is genetic.

My entire life, I have been sick, but even more as an adult.  Immunodeficiency is a difficult life - whether it is ICL, CVID, SCID, or any other immune system deficiency.

So now you know just a bit more about my struggles.

I am not alone.  I have friends that have immune deficiencies.  However, they are all online friends.  I actually "know" no one in real life.

We exist.

And finally, immunodeficiency is represented by a zebra.  Isn't that cool?  

Taken from the Immune Deficiency Foundation:  

"The primary immunodeficiency community often identifies with zebras. This is based on an old saying. In medical school, many doctors learn the saying, “when you hear hoof beats, think horses, not zebras” and are taught to focus on the likeliest possibilities when making a diagnosis, not the unusual ones. However, sometimes physicians need to look for a zebra. Patients with PI are the zebras of the medical world. So IDF says THINK ZEBRA!"

And THIS FOUNDATION does everything in their power to help us muddle through the muck - and there is a lot of muck for us.  Paperwork, lab work, Drs, Specialists, insurance problems, insurance refusals, medicine funding, and just moral support... 

Enough for today's lesson... tomorrow, back to the fun stuffs!

Many, Many Years Ago...

Before Steve and I were even married, I lost part of my family.

My mom was adopted.  Her entire life her adopted brother was very mean to her.  When she was older he got meaner - and once he told her the family hated her, tolerated her and never wanted her in their lives.  She believed him.  She just quit visiting with them.  Her adopted mom, her cousins and...  well, the entire family.  If she wasn't wanted, she wasn't going to force the family to 'tolerate' her.  Why would she?

She once got a very ugly letter from my Uncle Billy's wife.  I won't even repeat what was in it - other than to tell mom she was a burden to everyone, she owed them thousands of dollars for grandma's care and if she ever tried to contact her they would put her in jail for not paying.  It was a mean, ugly letter.

This was before cell phones, facebook and all that unites us.

Mom was broken hearted, disconneted and died thinking she was not wanted by anyone in her adopted family.

Fast forward to now.  Our family is all on Facebook.  Somehow a cousin got in touch with us and we all visited back and forth for a long time... gently treading waters because, heck - we didn't even know each other any more, even though years ago, Melanie, Valerie and I were as close as cousins could be.  When we went to grandma's house before all of this happened, we all loved spending time together.  We had Easter Egg hunts, Thanksgiving meals and Holidays together.  We loved each other!

Again, fast forward to now; one cousin finally asked me why we disappeared off the face of the earth.  We talked online and I told her the 'short story' version.

And she said, "My dad was a ass.  Not one person in our family loved him.  No one even liked him.  He was vicious, he was a drunk, he was a player, he was hateful, he was mean and he died a lonely death because he was such an ass.  None of us children had anything to do with him.  He was a mean S.O.B. through and through.  I am sorry your mom was told that, but we all loved her and missed her.  Grandma just didn't understand why your mom quit coming around.  None of us could ever could figure out what happened."

And so, we never had to lose that part of the family.  Grandma died broken hearted because she thought moma had disowned her, moma died thinking grandma and the rest of the family didn't want her and our families separated and went different ways for 40+ years.

But last week, we had a wedding in the town we lost.  Since I was going to El Reno for the wedding, I made arraingements to meet up with my cousins - they all lived there still.  Liz drove in from Okmulgee.  Sherry (my baby sister was named after this cousin) and Melanie met us at the campground and we talked.  Heart to heart talked.  And we reconnected.  And I am finally a part of the family we lost so many years ago.

One person can cause so much heart ache.  He was my uncle, but he was their father.  How sad is that?

But he doesn't control us anymore.  We are once again family.

Thank you, Liz, Sherry and Melanie for opening those doors.  What a wonderful family reunion!  We have sure missed you.

We have always loved you.  I am so glad we are together again.  We may have lost 40 years, but here is to the next 40.  

I hope grandma and moma are reunited in Heaven and know the story now.  


Here's to more fun times!

Sherry, Liz, Melanie, and I in El Reno.

The Cumberland Quilt

I finished my newest quilt, The Cumberland - and it just might be my favorite yet!  I absolutely love the colors in it:

And I made cornerstones with my new sewing machine to match.  Didn't they come out great?

Finally, I made a dedication label for the two very special people it went to; the wedding couple:

Here we all are; grandmother of the bride, Yvonne, me, Amanda and Austin:

I did not ask them to hold it up, but someone else did.  I got a picture of them with it.  I hope they enjoy it for many years to come:

Congratulations Austin and Amanda!

Note To Self

If you are going to ear tag your own cattle, you must do it when they are first born; weak and not yet fighting strength.  That comes within the first day.

While we were gone to the wedding, our other 4 cattle had their calves.  Megan thinks she is the 'calf whisperer' now!  She was staying at our place when all those babies were born.  She is so stinking cute!  I think she might have been having a blast though!

Anyhoo, Steve had to tag the calves that were born while we were gone.  He had tagged Rojo the first day he was born, but these calves were a few days old when we got home.  He did it, but not without (maybe) rolling in poop, being stepped on, cussed out by the moms, having part of the round pen knocked down, a few fingers mashed and kicked a few times!

We named the first red-headed girl (below) Little Megan.  Guess why she got that name?  Lol... 

Here she is with her earring!

Just a few pics of the other calves...  we have 3 new heifers and 2 new bull calves.

This one got stuck in the hay ring.  Steve had to show it how to get out... lol...

Farming is a crazy life - but it suits us.  We learn a little every year to make us more efficient.  Thankfully, Steve has Rod and Mike to help us along when we are in the 'need to know' part.  We definitely need to know a lot more than we do.

Thankfully all are ear tagged now and we can start enjoying their antics - and the 'need to know' is marked in the 2018 calender to tag as soon as they are born.  

About the antics... all 5 babies chase the chickens, the dogs chase the calves, the donkey chases the dogs and we chase whoever we need to catch  in the moment.  It was definitely easier when I had a 4 wheeler, but we get along... lol...

Farming is fun and entertaining to say the least.  And I think our neighbors think so as well.
I am sure they are watching our crazy little farm; but its "Justa Little (crazy) Farm".

Here is the lowdown for future reference:
Maddie had #14 (aka Rojo/bull calf) on Wednesday, March 8th while we were still at home.
Sadie, a new freshner (1st time calver), had #16 (heifer) on Friday, March 9th
Hazel, had # 15 (heifer) on Saturday March 11
Lucy had #18 (bull calf) on Monday March 13
Elsie, also a new freshner, had # 17 (aka Little Megan), during the night of Monday, the 13th or early Tuesday March 14th.

Punkin' Plays Piano!

And I love listening to her!

This piano was given to her by the church!  They had 4 unused ones sitting around and the preacher really thinks she has talent, so they gave it to her!

All her mom and dad have to do is get it tuned.

Isn't she great?  She has only had a couple of years of lessons.  This is just a bit of her playing - we took a better one, but it was too long.  BUMMER.

Oh!  And she is wearing green!  
Are you?

The Most Beautiful Wedding Ever!

Amanda, Steve's step brother, Mike's daughter got married!  We helped out at the wedding and had a blast!  We left last Thursday and just got home today.  What a beautiful wedding!  There were at least 250 people there!  Oh my gosh, it was the most perfect wedding I have ever been to!  LOVED it!

We stayed in El Reno for 5 days while the wedding festivities were taking place.

Here is the happy couple after the wedding:

 

Aren't they adorable?

We had an absolutely wonderful time at the festivities!  


As usual, I am sick.  I still haven't gotten over that mess with the flu.  The flu is gone of course, but the crap from the sinus/chest just keeps hanging on.  And I am pooped.

Of course, this after going 9 days straight.

I am trying to rest now that the wedding is over.

Steve and Aunt Sandra cooked fried fish and boiled shrimp on Friday, Saturday was the wedding and we left the campground Monday.  Tuesday I was in charge of decorating for an OHCE Awards Banquet and Wednesday I had an OHCE Executive meeting.  Wednesday (yesterday) was also our 40th anniversary, but I was too tired and too sick to celebrate.

This is my world.  I try to keep on rolling, my body rebels and I just can't get it through my head that I will never be able to go, go, GO!  like I used to.  Sinusitis is extremely common in people with immunodeficiencies.  That is me.   

ICL sucks.