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.  ♥

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.

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.