Wednesday, April 26, 2017

Our Iris Are Blooming!

That garden we worked so hard on is finally paying off!  Check out our spring blooms!







This may be my favorite iris EVER!



Not feeling well enough to post more than this today.  I am very afraid I have pneumonia.  :-(

Immunodeficiency sucks.

Tuesday, April 25, 2017

Spring 2017 Crawfish Boil

We found Louisiana crawfish in Tulsa!!  We pre-ordered 4 bags and they arrived safe and sound:



The boil was fantastic!  We had at least 56 people come!  



Jennifer (our niece) flew in from her home in Ohio... and we found out they are EXPECTING a BABY on October 8th!  WHOOT!




My friend Sharon and her granddaughter, Chandler and Chandler's fur baby, Annie.



Is this baby anticipating her bottle or what?!?



Dwayne (Steve's cousin) and Steve shooting the bull... 



Steve's step-brother-in-law, Mike (right) and Denise's boyfriend Scott on left:



Steve's mom and Rod:



The famous strawberry pie everyone expects!



And the recipe for it - it is delicious!



The way I spent much of my day - and I didn't eat even one crawfish!



Yep, it was a great day - even though the Oklahoma weather sucked.  It was cold, wet, windy and... well... springtime in Oklahoma.  But no one was daunted by the weather - the turnout was terrific!

Thanks everyone for all the help and fun!

Monday, April 24, 2017

ICL Dr Update and Happy Stuffs

I am having issues trying to post on my blog.  I am on my phone so much that I tried to post from there, but it won't load my recent pictures from there.  So I have to d/l my phone pics to my computer to blog, but I am not on my big computer often enough to remember to do that!  Argh!!  I have had this blog ready to post minus the pictures for a week!

Results of my Dr visit? I am anemic, my t-cell blood work sucks, my kidney numbers are great and I am 3 points from having to take IgIV... which is $10,000-$12,000 per infusion. If it comes to that, I may be able to infuse monthly (I am dreaming) ... but most people infuse weekly or bi-weekly... time will tell. I have to be tested for the IgG level every 3 months now since I am so low.  We shall see... 






Now on to fun stuffs!




Raelee appeased granny and we dyed eggs together - I am fairly sure her mom bribed her, but I still enjoyed it.  She is growing oh, so fast!



Here we are!  Oh, and that is my natural curly, gray hair.  Back to basics now... lol... 



After we dyed eggs I bribed her into doing an art project.  She wasn't thrilled with it, but did it anyway.  She told me it was just a good waste of Crayons:



I think she liked the end product though!



Steve and I went shopping a few days ago.  
This view is typical of our grocery stores... and I love it:



Now finally I will update again on today's Dr visit - remember, most of this blog was written a week ago?  A few months ago I had some pretty serious kidney numbers.  I was at stage 3 kidney failure!  It was a mystery to me, but I had recently went on a diet and the Dr had changed one medicine.  I was pretty sure the diet didn't cause the kidney problems as it was a good solid healthy food diet.  So, Steve and I decided it was probably the new medicine.  I quit it and when I went back for my monthly blood work, I was all better again - after the previous 3 months of sucky blood work.  We fixed it, right?

WRONG.  

The Rheumotologist said today that he is fine with me believing that, but he isn't so certain.  He said my lupus blood work is off the charts and he is more inclined to think it was caused from a lupus flare.  So he pulled more blood and is re-evaluating.  We have to keep an eye on the kidneys now.  Not just the t-cells and the lupus.  UGH!  Another bump in the road.

And next, I chat about our weekend crawfish boil!  It was cold, wet and rainy... but you must wait until the next blog post (hopefully tomorrow) to see how it went.

Taa taa for now!





Wednesday, April 12, 2017

Another Ruffle in the Feathers...

Another moment in the life of ICL:

I had the flu in early February.  I still have not recovered completely from it.  I have a cough that just will not leave.  Of course, my sinuses are still icky - but that is a permanent part of my life.  I am drained and tired.  This is what ICL and Immunodeficiency is all about.  My body fights battles I don't even know it is fighting.

I am sluggish, tired, no initiative, and my get up and go has gotten up and gone.  I can not force myself through daily activities - much less enjoy every moment of life.  I enjoy moments in life.  Steve and I often sit in silence because I am so lost in my own thoughts trying to figure out how to survive  - that I forget there is anyone out there I need to talk to.  It is a comfortable silence, but I don't chatter about day to day activities.  Maybe that is a good thing.  When my body crashes and it usually crashes hard.  Today I slept the day away.  This is very common in people with Immunodeficiencies.

I have always been able to push through, and though I appear to push through to outsiders and locals - (I have only lived here 5 years), I don't.  If you have not seen me during my kids growing up years, then what you see is not what my life has been.  I have always been extremely active in volunteer work.  I was active as a Girl Scout leader/SUM/Cookie Director for 21 years, I was a band booster for 9 years, I was a Boy Scout helper, an active church member for many years and I had a full time job during some of that.  I kept up with my kids their entire lives and my 3 nieces and nephew who lived with us for 2+ years.  I have always been able to multitask.  Now I can't even single task!  And a nasty brain fog is part of this disease.  I have the brain fog most days.  Directions are like reading German... and I don't speak German.

I can't dust, vacuum, do dishes, laundry and tidy up in one day.  I can only do one or the other - and I sleep in between because the fatigue is beyond any I have ever felt before.  If it weren't for Steve, I would be in a terrible bind.  Thankfully, he helps a lot.  An awful love.  He pulls his share and most of my share.  I love him so much.

Finally, I finished my antibiotics last Friday... but guess what?  I need them again as my sinuses are raw, bleeding and well... nasty.  I can never stay off of antibiotics - not even for a week.  Do you know what strong antibiotics do to the body?  Stomach issues from you-know-where.  Probiotics you say?  Guess what - they have LIVE bacteria.  Good bacterica, but still live.  Can't have anything with 'live' in it; probiotics, live vaccines (you know, shingles, some flu shots...).  So another ruffle in the feathers - I got a normal tummy for less than a week and get to start the mess all over again. 


Tomorrow I go see my immunologist... he will look at my paperwork from NIH (National Insititue of Health) and we will see where I go from there.  I know my numbers dropped (not good) and I have a few questions about things they found.  Wish me luck! 

All of these problems are what people with immunodeficiency suffer.  It is not just me - it is the entire 'zebra herd'.  Life with immunodeficiency/ICL just sucks rocks.  My life is good - it is the ICL that saps the enjoyment out it.  As I said, I enjoy the moments.  

And I sleep between them.

Tuesday, April 11, 2017

Triplets!

One of Stephenie's goats, Lane, had triplet GIRLS Friday, April 7th!  They are all so adorable! 







Stephenie always wanted to be a teacher when she was growing up and got her college degrees to do just that.  She home schooled Raelee for her first few years using those degrees, and has her teaching credentials for Oklahoma.  However, something I never imagined our girl would be is a 'farmer girl', but she wears it well! 

She has taught me so much about life.  I often wish I had her drive to learn new ways of doing things... when I was her age I was just learning how to be a mom and having an awfully tough time doing it; making a heck of a lot of mistakes and doing so much of it by myself because Steve worked 80-120 hours a week in the oilfield.  I was a disaster at being a great mom, and seeing Steph so calm, cool and collected most of the time makes me proud and sad.  I wish I had had that much confindence and direction when I was raising her and Jeremy.  I wish I hadn't been so frustrated and showing it by my loud mom voice.  I wish I had some parenting classes to show me how to do better and quieter.  

But, in retrospect, I was also raising my teen sister and a neighbor's child - each with their own very strong personalities already developed - and our very young children.  I was trying to keep them all involved in scouting, schools, church and activities so they didn't have time to be in trouble.  Looking back on it, maybe I didn't do as bad as I feel like I did.  Oh of course, there are lots of things I should have done different.  I wish I could go back and have a redo, but I can't.  I just hope they know I love them and did the best I could.

All the kids are grown, were seldom in any kind of trouble at all, they are all self supporting, we are not raising any grandkids and we have wonderful, smart grandkids.  
We must have done something right.  

I look at the kids and think how did they become so successful?

They had decent parents who taught them values, morals, right from wrong, 
and to go for the gold.  Never give up on something you want.

I think we have all gold medal winners.
I am proud of our kids.



Real people kids and goat kids!

Wednesday, April 5, 2017

The Fatigue!

More on the immune system...

Since the immune system regulates so much in the body, many things can go wrong with you when you have immunodeficiency.  When the immune system crashes, AUTO immune diseases visit you more frequently.  The problem is the immune system largely dictates what your blood work looks like.  When the Dr looks at your blood work, sometimes it is a guessing game what is going on. Example: My lupus blood work is all over the board.  One blood test the ANA is off the charts, the next time it is below normal.  The same with other parts of my blood tests.  Does it mean I have lupus?  Possibly.  They often start going with symptoms...

My immunologist explained that it is because my body is clueless what is wrong.  I have a dis-regulated immune system, so my body can't 'read' the natural signals because they are not there.  


So, I have been diagnosed with SLE Lupus, Sjogren's Syndrome, Fibromyalgia, and Sarcoidosis of the lungs - in addition to ICL.  If you look up all these syndromes/diseases you will see each one in itself causes fatigue - and a landslide of other problems.  Did you read the symptoms on all of those?  


Since my immune system crashed, the Drs have said it is like a domino effect; auto immune diseases will continue popping up.  I hope they are wrong, but the immunodeficiency support board I am on says otherwise.  2,044 members - and the majority have landslides of auto immune problems in addition to their initial immune problem.  And I am the ONLY ICL patient.  

Also, immunocompromised patients (esp with ICL) are susceptible to opportunistic infections and cancers - especially lymphoma.  The t-cells (specifically CD4) recognize those nasties in your bodies, but, (here we go again) remember I am at 39.  The nasties would have to slap the 39 to get noticed, but are more likely to scoot right on past, into the body and wreak havoc.  And that is what we watch for.

Oh.  My.  Gosh.  The fatigue.  It is unexplainable!  It is deeper than bone marrow.  If I ran a marathon, I believe I would still have more energy after it than I do after walking 200 ft - I have worked extremely hard occasionally in my life, and it doesn't even begin to feel like I do on a daily basis.  Every day, I am fatigued.  Extremely fatigued.

I have finally given in to the fact that I can no longer be superwoman.  I do what I can and forgive myself for what I cannot do.  I have always felt guilty for not pulling my own weight, and I still do, but I have also conceded that if I go overboard, we suffer for days;  Steve and I both do. So we shut it down when I start getting wobbly. He shuts me down before I collapse - I am still learning my limitations.

If you look up Idiopathic CD4+ Lymphocytopenia (ICL), you will find very little information about it because there are so few of us that have it.  I am HIV negative which is a huge factor.  I have basically the same problems HIV patients have except I don't have HIV.  However, my CD4 count is 39 - very critical. They are extremely concerned when your CD4 gets below 200.  

Mine is 39.

There have been studies on ICL since 1992 - the same year my dad was diagnosed with (we think) the same thing.  Of course they didn't know that then, but we assume that is what he had, because he died of Micro-bacterium Avium Intercellular - an opportunistic infection that kills people with ICL.


Because of that - they assume my ICL is genetic.  

The Drs at the National Institute of Health (NIH) are trying to find out what is happening to my t-cells.  They have found that my antibodies are sticking to my t-cells and smothering them, but they have no idea why.  So they fly me back to Bethesda Md to study me and my blood.  Yes, I am a guinea pig.  And yes, I pray for an answer. But if they offer me a treatment, I would seriously have to weigh the options of taking it.  They have already tried stem cell (killed the patients), bone marrow (killed the patients) and transfusing the t-cells into the patients, but they died also.  Since our t-cells are the supposed to be the ones that jump start the immune system, we have no way to fight infections that can come with those choices.  How bad do I want to be a guinea pig?

Right now there is no help or cure for ICL.

Maybe someday there will be. And maybe it will be a safe cure.  That part scares me.  I go to NIH in case any of my ancestors have/get ICL.  I want to be part of the cure.  And if I can save someone else from this awful disease, I would gladly do it.

Until then, oh my goodness, the fatigue! 

Enough for today.  Make it a good one!




Tuesday, April 4, 2017

QUADS!!

Stephenie's goat Chloe had QUADRUPLETS last night!  Can you imagine?

Itsa boy!  Itsa boy!  Itsa boy!  Itsa boy!

Yep, BOYS!  All four BOYS.








There is one runt who doesn't have a nursing reflex yet, but he is doing fine right now.






Aren't they adorable?

I went to meet my new grand 'kids' today.  Love them all.  But I am glad they are Steph's and Chloes!  Twins are lots of work.  Triplets are lots of work.  Quads?  I can't even fathom quads.  

But they are adorable!

Sunday, April 2, 2017

Tulsa Botanical Gardens

Yesterday, I woke feeling better than normal.  I went with my sister to some garage and estate sales; spent a grand total of $2.50.  Pretty good, eh?

After we finished Steph suggested going to the Botanical Gardens... Oh my goodness!  The tulips and hydrangeas were gorgeous!  Today, I am just going to share pictures:














They had a terrific children's area.  This was one thing I found interesting in it... it asked how many animals you can find in it:






The gardens are small right now, but they have plans to enlarge them:





If you have a few minutes, take a walk at the Tulsa Botanical Gardens!


Singapore Memory Project