Thursday, April 27, 2017

In Singapore and Homesick as Hell... It's an Old Post...

A blast from the past that didn't get posted... probably because I didn't want others to see my pain, but today I don't mind.  There were difficult days being away from home and this is one of them...  Dated October 16, 2008:

My computer is still acting weird and I cannot get these lines out of my blog no matter what I do; not in blogger, not in Word and not in Outlook - sorry for the inconvenience of reading with lines, pictures in random places and odd colors I am tired of worrying about it. I am going to post this now and edit tomorrow if I can.

Expat I am, but I admit not willingly. I am honestly trying - I do see good in everything possible most of the time, but some days it is more difficult than others. Today is one of those days.

On the weekends in the states we always looked forward to with anticipation - where we’re going to go for the day and what were we going to BBQ on Sunday? Who would show up unannounced? We looked forward to the 'drop ins'. Steph’s, Jeremy’s and our friends showed up because they knew BBQ or plenty of good food was on the menu they knew that door swung open for them with open arms and laughter waiting.

My mood lately sucks. I guess I am homesick to the core. I don't think I was made to be an expat. Some people graciously fall in to that place and do so with so much grace that I feel 'out of place' to be a part of such a great group of people. I wish I had it in me to adore every morsel of where I live and the circumstances surrounding our expat life. I wish I could embrace every single moment I am in every place we get to explore. While I do enjoy the change and adventures of getting to know the new place, I never want it to be permanently - heck, not even semi permanently.

Vacations are wonderful - but you know how it is always nice to go home at the end of them? That is right where I am. I know I should feel blessed to be 'living in paradise' but I don't feel that way. I feel isolated from my natural world.

The fact is I don't feel 'blessed' to be away from my children and grandchildren, my car and my backyard, or away from our family or my friends or my home or heck, even my country. I don't feel the need to live a life of paradise or the life of an expat - I was completely content living in the modest home we have with weekends filled with family, laughter, bbq's, good food and giggles and tickles. I miss cooking for our daughter and her cooking for us. I miss our guys fighting over the checks, I miss my Saturday night 'manicures' with our granddaughter, her McDonald's distress calls and I miss her sleeping on papa's pillow just to make him come tickle her.

I miss my pots and pans, my own kitchen utensils, my pictures, my tv shows at a click when *I* want them, and I miss Steph, Jeremy, Liz and Shari calling me just because it was their daytime and my daytime all at the same time.

I miss Tampico dates, women wars (she knows who she is) and not having to fight for a prescription refill. I miss my Friday morning hen session, my Bible and I miss grands’ secretary that I can touch and feel generations of love flowing through. I miss cuddling up in Steve's recliner and watching tv because I can. I miss the pillow fights, the water gun wars (loved the reminder yesterday – sorry if I scared you. I know you have never seen that side of me), the occasional camping and I miss just LOOKING at my camper when we can't camp. I miss my cat, our patio, my porch swing and the swing. I miss our chiminea, sitting outside and chatting in the heat while watching our chiminea fires and marshmallows roasting over that fire, and I miss my darned pillow!






















I miss my scrap room to putter around in when no one is home - and going to my daughters to collect my 'missing' loot. No I cannot pick this up and bring it here - how in the world would I chose what is important enough to bring? I NEED it ALL! If you scrapbook - you know what I mean.





I am not sure anyone can wrap their mind around my homesickness or if anyone even has an interest to understand. Every expat gets homesick - I understand that. Most, in the same instance, can look around a room full of their very own belongings that they moved from their previous home and know that home is now here for them - and it is all with them. My home is still living in Louisiana. *I* live here. *Steve* lives here - but the stuff that makes our home what it is - well, it is not here - it is right where it belongs.
I feel like I was plopped on to another planet and the rest of the world expects me to be absolutely thrilled that I am living on an exotic island and in a beautiful condo half way around the world with an outstanding view - and I should just shut up and be content. What is not as obvious is that we can't even get in a freaking car and go for a drive around the block! THAT is not fun, romantic or living in luxury. 


It is on vacation in a far away land, staying in a nice hotel with a great view, with only taxi's to take you to do all your sightseeing, grocery shopping and visiting. We cannot even rent a car here :-(

It. Is. Not. Fun. The vacation is over. Don't get me wrong, there are many times of great fun; we still have lots of laughter and love the new friends we have made - and yes, there are good times. The homesickness gets me most during the week when Steve is working, or when I don't have something to occupy my time – like today.
Steve is busy typing out his crawfish boiling technique so the family can do it at home without the ‘pro’.

I dearly love the friends I have made here. 


I thank you Pam and Sarah for trying to understand and for making me as comfy as possible in this new life. I love you both and I love going out with you to the shows, shopping, and eating lunch out. I am sure you are sick of my lack of... belonging, and I hope I don't bring you down - I hope I am cheerful when we are together; I surely try to be. I love you both and thank you so much for making it easier on me – I cannot imagine not having you to be there for me. I hope the lack of interest you see here does not always show – and it is not always as bad as it is today. You truly do make my life easier.




With all of this having been said, I have showed you a few pictures of what I miss about south Louisiana. Of course I miss everyone else that I can get in a car to drive or easily fly to see; but of all of it, home would make it all better. I hope you can feel the love I so desperately miss – and most of all I hope you understand today is just a homesick day and a way of life I would not chose to live, but a way of life we must live. It is not bad, expat living is just not for me.

My rant is over - tomorrow I will be waking to new sunshine and all will once again be right in my world.


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!




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