Saturday, June 17, 2017

Home and Lovin' It


Busy, busy, busy!

I peeled 15 lbs of apples and dehydrated them...  And I have been packing... Getting ready for a wild adventure next week...



Walked around on our property and found some sand plums - thanks Steph for identifying them!



Went to Hebert's in Tulsa and had a shrimp poboy with my sweet man:



Fed the cows carrots when I was actually trying to feed the donkey... see Windy behind me? Don't worry about her - she got some carrots before the cattle invaded her space.


And I got photobombed by Elsie - who thought I was holding out on the carrots!



Been a great week.  I am happy to be free and happier to be home and cooking our own food.  

Wednesday, June 14, 2017

We Did It! We Did It! We Really, Really Did!

It has been a rough two weeks for us, but we DID it!

My Dr plunked me in the hospital for two miserable weeks for IV antibiotics to get the 4.5 year sinus infection and chronic bronchitis under control.  I survived and so did Steve.  When I came home (after begging the Dr to let me pack - the case manager said I was a first ever to be released early by him - I whine good!) I had another 5 days of IV antibiotics Steve had to administer 24/7.  We got 'er done and I have been able to pack for our vacation!  


Here are a few pictures of what we went through during those 5 days:









That little round cylinder is my medicine!  There medicine was one small cylinder and the other medicine was a large cylinder.  CVS invented these COBAN cylinders to give you IV antibiotics without the pole - they self deliver!  I actually put these in my apron pocket and went about my business while the antibiotics delivered through the pressurized system.  WAY TO GO CVS!  It was about as easy as it could be considering the circumstances.  The courier even delivered the medicine cases (2 HUGE boxes) from 2 hours away.  They called before we left the hospital and met us at our house for delivery!

AND I got the PICC line out today!  After a visit with the Dr, he agreed it was time to remove it - but in the same breath said, "Next time we won't let it go so long..."  


NEXT TIME... *sigh*  He is pretty sure this won't be the last time I have IV antibiotics.

But we did get some good news!  My IgG has dropped well below what is considered to be a normal level.  I shouldn't be making antibodies, but when he tested my pheumoccocal vaccine titer, I had made antibodies against some of the pneumonia types - not all, but some!  So... we are waiting on more tests, but my body is making antibodies to some extent.  My Dr said he has no idea how that is happening, but it is.  YAY!  

Now, my update on whether or not this helped - I feel better than I have in a very long time! So these IV antibiotics definitely did help!  I am stoked!

Well that was my week.  I am packing for an adventure the next few days, but I will try to update about something fun now!  Like I said, it has been a rough few weeks.

Putting my Ninja Warrior suit on so I won't be annoyed by infections!





ZEBRA STRONG!
Immunodeficiency Sucks.

Saturday, June 3, 2017

I Need A Jail Break!


Today is one week that I have been in the hospital for a chronic sinus and bronchitis infection.  My Dr came in yesterday and said maybe by Tuesday I will be able to go home.  Believe me, I am ready.

I am in isolation; few visitors can come in and they must not be sick - even a little sick.  All of the staff has to dress in gowns, masks and gloves to enter my room.  God forbid should they forget something... they have to strip the sterile gowns, gloves and masks, go get what they forgot and redress to come back into my room.  I don't bother them.  Once they come in, I give a list of what I need; bottled water, spoons, sterile water... whatever.  Other than that, they don't know I am here until their computer tells them they need to change my IV or bring me medicines.  All of this means I have very little contact with anyone.    


I am not allowed to have fresh fruits and veggies, not allowed to have ice or water out of the machine.  I get bottled water only and it must be washed before opening - and no ice at all - not even from the hospital kitchen.  I can't go out of the room without a mask or gloves.  I have to wash when I return.  


All of this because of the lack of immune system.  My ICL was bad enough, but now I have been diagnosed with hypogammaglobulinemia - another word I have to learn to pronounce because I have it.  The Dr explained since my T-cells are missing, they cannot tell my B-cells what to do.  Since the B-cells are clueless, they don't make antibodies to protect me from germs, viruses, and whatever... yep, it just means my immune system continues to tank.


"Hypogammaglobulinemia is an immune disorder characterized by a reduction in all types of gamma globulins, including antibodies that help fight infection"


There is help for the hypogammaglobulinemia - I will start monthly IgIV's to replace what my body doesn't make.  This does not help my t-cell deficiency, but it will help me fight the infections my IgG should be fighting.  I had no idea the immune system was so complex!

So that is my update today... I know you may get sick of hearing about my ICL and immunity problems, but I am honestly trying to find someone else that has it and to open people's eyes to immunodificiencies.  It is just not that common and I need to tell my story.

In the meantime, I am wrapped in love while I am here:



And thanks to the few who have braved coming up to see me.  I was not allowed to have visitors, but my hubby, sister and another friend have dropped by.  And the cards are adorable!  Thank you, thank you!  

I need a jail break.  Seriously need to just go home.  I miss my life. I miss my hubby most.

Wednesday, May 31, 2017

Oh the Things I Could Do!

Chronic pain is a part of me.  I live with it but I don't thrive with it.

There are now two sides of me: The side that can no longer take a single moment more of the misery pain brings, the kind of pain that demands to be felt, that leaves you wailing inside, stoic on the outside… And then there is the side of me that knows this cannot - and will not - be how my story ends.

You look at me and see the smile on my face, the smile that so easily hides the lady that’s inside; the lady who feels hopeless, lost and completely broken down. On occasion, there are still moments where the old me surfaces…the overly determined and ambitious type A personality I used to be. The one with the deep need to prove herself, to push herself past her limits and achieve what people don’t believe her capable of.

But these days I see her less and less.

Days fade and bleed into one another; my life swiftly passing by. Some days I can function, others I have to give in to the pain, put life on hold and let my body reboot. I resent those moments. I resent those days. God made me to be full speed ahead; pain makes me pause. If it isn't the chronic sinus infection, it is lupus... or fibro... or something else... or all of the above... but it is always pain.

Years ago, I woke one day pain free. I cannot remember a day prior to this day nor a day since that day of being pain free. I asked Steve if that is the way I was supposed to feel... He just stared at me.

I don't think anyone without chronic pain understands those of us with chronic pain. Bumps on the road hurt us - even little ones. They are approach them with no thought at all. We cringe when we see them coming, brace for the painful impact and cry out when it bolts through us. Oblivious to us,  they barrel through life without a care in the world.

A drop of water on a stone does no damage, but constant dripping eventually erodes and changes the shape of the stone forever. That is what pain has done to me; it has worn me down and changed me forever. That is what people without chronic pain do not understand; it eats away at us day after day, month after month, year after year until you wonder if this is all there is left of you. It strips your smiles, your goals, your happy dreams and your will to thrive. It has left a void that cannot be filled - one that makes me angry, desolate, reminiscent  and longing for "Oh! The things I could do..."

If only I were pain free.

Monday, May 29, 2017

Just Call Me Absent...

I have once again been absent... but there are reasons... and I am not permanently gone, just pausing...

I haven't been well. This sinus infection gets me down. I always have it, but it is in different stages of how bad.  Lately, I guess with spring we are in the icky stage... 

I had blood work done last Tuesday.  Thursday, my sinus infection took a turn to a sick sinus infection... Friday, thinking ahead for the holiday weekend, I called my nurse asking for a change in antibiotics.  Little did I know how that would change my weekend plans.  I was admitted to the hospital!  Dr Carey decided that one year of constant antibiotics had not worked so we should do IV antibiotics.  I tried to put him off  until Tuesday, but it was a no-go.  "Dr wants you at the hospital tomorrow morning."  "How long will I be there?"  "Plan on a week at least." "!!! GULP !!!"

Here I am!  I have 2 different antibiotics running into my IV's, just rotating out.  I am taking one by mouth.  I am getting iron (I am anemic) and potassium.  And I am stuck in a hospital room at least one week.

He told me yesterday they will put a PICC line in for long term (at least 2 weeks) of IV antibiotics.  Depending on how I tolerate them, he will determine when I get to go home.  The nurses assure me not to get my hopes up for short term;  Dr Carey's patients get long visits due to their immunodeficiencies.  I am on the cancer ward.  Cancer patients take chemo which lowers their immunities.  I am in isolation.  People who come in have to have masks on.  I don't see faces - just eyes... and I cannot have fresh fruits and veggies.  Do you know how much that sucks?  I LOVE fresh fruits and veggies!

I am not going to lie - I am a little unnerved.  My immunodeficient friends say this is common - to get used to it.  How in the world can I get used to this? And I DON'T WANNA!!

I want to go back to oblivious... not knowing what I am facing... what could happen... what could likely be my demise... I want to go back to my old, fast, amazing, busy, adventurous and fun life.


I want to be absent minded about my health.

I just want to be absent in this whole process.

What do you think God has in mind for me?  I like to try (!) to figure this out... So far, for nearly everything that has happened in my life, God has led me to the reason it did... so could I be a find for the cure for someone's illness someday?  Who knows?

I just know God is not finished molding me yet because I still grace His earth.  I am not absent.

So here I am!  You might see a lot of me.  I have plenty of isolation time.  I might find my way here more often, absentmindedly posting about sweet nothings going on in my life.  


Thursday, May 18, 2017

Thanksgiving Holidays

Finally the last 'draft' post in my blog that didn't get posted... and I have them all out now.  They were too good to toss out, so now they are all posted.  Brought back a lot of sweet, sweet memories.  Thanks for putting up with them.  This one is dated 11/29/2010:

What did we do for Thanksgiving?  We missed Todd of course  :-(

But we were brave and we made the best of it.  We smoked turkey in our own smoker:



The dogs monitored it closely:



But regardless of their interest, we still had a turkey left when the time was done:



Steph made yummy home-made rolls:



Punking and I cut veggies:



She cut a lot by herself:



And she had all 10 fingers left when she was finished!  She used every one of them to fold napkins and set the table:



We decorated the tree:



We reminisced about the special ornaments:







Thursday, May 11, 2017

It Is Official!

Another blast from the past.  This is in my 'drafts' folder and I am going to share it because it has some great memories.  Throw back Thursdays...  The date is 10/12/2010

It is with bittersweet feelings that I can now announce that Steve and I will be moving back to the states permanently by the beginning of November.  We are both excited and sad - understandable since we love this little country and have met so many people we love even more.  We have had a great, humbling experience here - one that has changed our lives forever and that we are forever grateful for.

So in answer to some of your questions, yes I have been collecting treasures so we can take them home with us.  It has been a rather amusing experience - apparently all expats know when you are frantically shopping it means you 'have received the notice"!  I am sorry I could not directly say it was true, but you knew, didn't  you?  Lol... indeed we had an idea it was coming, but we had no idea it would be that quick.  

As of yet, we have no idea where we are going in the good ol' US of A, but we know we are going back to the states.  There are several possibilities right now, but no definites.  We do know we are leaving for sure by the first week in November and possibly sooner.  So if you see a whirlwind of activity around you in all the common shopping areas, you will know to look for us!  We will also be hitting the "Must Sees" that we have missed - can you believe we have missed some?  We need to see the sky park at Marina Bay Sands, the Equinox (Kim's suggestion), the gothic batman building (Parkview Square), try to see the wine fairy and a couple of minor things...

I will blog more later.  I am trying to sew today, do my laundry, ironing, sorting and trying to find a place to put our treasures so the packing company can come and collect our loot to move to the states.  I hope you are not disappointed; I will keep up with this through our future travels and adventures.  As I get through my pictures, I will post more about Singapore as well - I still have tons I have not had time to post about.  It has been such a great adventure!  I will always blog about what is going on in my life and where we go.  Life is good no matter where God puts us.


Here are a few of my favorite things I was looking at yesterday...






I love these guys  :-)  Sure gonna miss them, but I will be ok - I have pictures and the pictures will last forever.

Thursday, May 4, 2017

Just a Few Thoughts for Today

Here is a laugh... I was going through my 'drafts' and this one was there.  Apparently I never posted it while living in Singapore... 

Living here I have noticed a few things, and there are other things I am getting used to:


Fahrenheit vs Centigrade. Yikes. I have a long ways to go there. Steve says multiply by: and I hear blanglkgniohgiohyaghagt. He is incredible! He made me a chart so I know where to set our air conditioners.

My taxi driver was going 120! What is THAT in MPH?

Cenitmeters vs inches - yay for my tape measure :-)

The people in Singapore are so very friendly here. I have yet to find a rude person - well, the other taxi drivers that run us off the road might be considered - but we are safely in the other taxi...

Our bed. We have a fitted sheet, but there is no flat sheet on the island to be sold. So here is the Singapore alternative: Make a comforter and make them all white. Make slipcovers for them to match the bottom fitted sheet. Make it snap at the bottom, Slip the sheet slipcover over the comforter and toss it on the bed. Flat sheet and comforter - that is our bedding. I just take the slipcover off and wash it. Now I don't think this is a half bad idea, if I want a beachy room today I can have beachy. If I want an asian room, I can have asian - just by changing my bedding.




My printer paper is size A4 Steve says. I know it is longer and narrower than the paper in the US.




There are no greeting cards to be found. Happy Birthday everyone - if you want me to send you a card, pick it out and mail it to me ;-) I promise to send it back with a Sing postmark and my autograph - complete with a friendly note from me.




Stationary? Yeah, consider that a no go as well - cannot find anything but computer paper here - darn, if I just had some stamps and ink...















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.


Singapore Memory Project