Tuesday, August 29, 2017

Port Installation Coming Soon

Port?  You say?
 

Yes, I am getting a port.  My veins are shot.  I have had so many surgeries over the years (due to my ICL) and so many blood draws that I only have one good vein left.  When I had my infusion a few weeks ago, they blew 5 veins.  The only two that held a little while was my one good one and one they found in my THUMB.  Suffice it to say, they determined that since I will be getting IgIV every 28 days that I need a port.

Like a cancer port. BUT I do NOT have cancer!  But I need a port.

Tomorrow, I will be getting my port 'installed'.  I don't like the sounds of it, I don't like the fact that a foreign body will be put under my skin and I don't like the fact that it will be permanent.  But I guess it is necessary and I do trust my Dr. 

It will have a bump under my chest wall.  It will look like and be accessed like this... 



I guess this is supposed to be good for me, but it terrifies me.  It takes a lot to rattle me, but this has me extremely rattled.  Maybe it has to do with 'foreign object permanently inserted into my chest'.  Maybe it has to do with them cutting on my chest.  Maybe it has to do with this article I read today:

Read scary things about it HERE.

And a much less detailed blog post which I enjoyed reading can be found RIGHT HERE.

So we will see how this goes.  Obviously I am concerned because a 25% success rate just isn't that good and I do have a serious immune deficiency.  

But back to trusting my Dr... 

While researching this, I came across this little tidbit of info.  Remember my CD4 count is 39?  Check this out:


  • CD4 Count Explained



    Healthy500 - 1,660
    Borderline Low350 - 500
    Low200 - 350
    Extremely Dangerous0 - 200
  • 39!

I have had a few too many reality checks in the last few months.  This port placement makes it all very, VERY real.

I will be using sewing therapy the rest of today - trying to wrap my mind around it all.  

Again.

Wish me luck.  Say a few prayers for me if you will.  I will be back with the update in a few days.




Monday, August 28, 2017

This Is Why We Needed To Come 'Home'...

I miss Louisiana with all my heart.  I miss my friend, Dee.  I miss my friend, Peggy.  I miss my friend Ann. I miss Matt and his crazy self.  And Mary Michelle.  And Kristine.  Heck, I miss all my friends.  I miss the life we left behind.  I miss the food.  I miss the uniqueness.  I do miss Louisiana.

But we needed to come home because we missed our families.  My mom would have loved for us to live nearby so she could see her grand kids grow up.  His mother would have loved to see them grow up.  The kids needed their grandparents.  Oh, they got to see them and know them, but they didn't get to KNOW them, know what I mean?  We needed to live in Oklahoma.  But we didn't, because we lived in south Louisiana.  Work was there and that was kinda important, ya know?

I know we had to live there for Steve's job and we never would have had the wonderful experiences and memories that we had. We met the most wonderful people on earth there.  I know we had a wonderful life living in Louisiana and friendships deeper than the sea.  But we needed to come home.  We needed OUR family.

Here is why...


We spent the weekend with the crew: Rod, mother, Uncle Weldon, Aunt Sandra, Joan, Mike, Steve and I:


And they caught fish!

I found my cousins I had 'lost' 40 years ago - and we stay in contact!

We can go to random church functions with our family even if they called at the last minute:

We can race to the hospital when someone is sick or in surgery:

We can support each other during worries:

We can cheer others on when they need us:

We can randomly hug them when we are together:

We can celebrate birthdays together:

We can have fun at an impromptu wedding celebration:

We can take a day and fish with them:

And we can see in their faces exactly why we need to be there:


We missed so many years with our loved ones, but we had a really good time in Louisiana.  It was just time to come back to our roots and our family.


And... apparently, I needed to be here to be properly diagnosed.  32 years in Louisiana, 2.5 years in Singapore - both places with constant hypochondriac statements, prescriptions and insinuations... yet 5 minutes with one Dr here and she knew where to look for my problem.  15 minutes later we had a plan.  And finally I had answers to many, many years of medical problems.  No, I don't think the Drs are better here, I just think it was meant to be for us to come home.

We needed to be home for so many reasons... 

...but it doesn't mean we don't miss Louisiana.  We certainly do!  Some days my heart aches for what we left behind.  And yet, in others it rejoices in the moments we are in.  

I love everyone who has ever been a part of my life.  You are a blessing - well, if you weren't then you were a lesson.  I just hope my friends understand.  I hope you don't forget us and I hope you come to visit.  We would sure love to see you.



We are here now, and that is what counts.  

Embrace your moments - wherever you are planted.  

Thursday, August 24, 2017

While the Kids Were Here...

We had a birthday party for Aedan who was born on "7/27 - like the airplane" he says... We did a scavenger hunt (remember those?) party for him.  He loved it as much as our kids did when they were young.  We bought Aedan a rock tumbler... which reminds me, I need to ship it to him!!  Grrr... I forgot about it...




Steve and Steph took the kids boating - they love to go out and play on hydroslides:




They went fishing with Uncle Weldon and Steve - they caught (and cleaned) fish! 




Marcus entertained us with his flexibility:



We had a storm and Steve, Todd and the kids helped clean the mess from it:



We went to an escape room.  Have you ever been to one?  OH MY GOSH!  They are sooo fun!  We ESCAPED from this one!  Too cool!




Steph, Cheyenne and I soaped together for Steph's business (Cypress Scents) at Steph's place:




Jeremy entertained me with sunglasses:


 


Cheyenne taught me how to make a corner to corner (C2C) afghan: 💗



Marcus has a great sense of humor and was always keeping us laughing:



Aedan on the other hand is our artistic and very smart guy.  He things WAY beyond his years and naturally uses words I have to think about!


Here we are dropping them off at the train station for the very long Amtrack ride back to California.  I asked if they would do it again round trip and they all answered, "Yes!"




We had a blast and enjoyed every single moment with them.  Thanks for making the trip to see us!  We love you all very much and I can' tell you how proud we are of you.  Jeremy, you have an awesome family!   Best visit ever!  


Noooo!  I didn't forget my blog, but I can only do so much!  I had to enjoy every moment with the kids - and then recouperate.  Onward!!  

Monday, August 14, 2017

Our Whole Family Is Here!

Our kids are here from California!  Cheyenne, Jeremy, Marcus and Aedan arrived by Amtrack Train on July 31st.  We have been having a blast with the kids here... we've done lots of things (more on them later)... but the most important was getting pictures!  I asked Steph to take pics of all of us and last night was the big night.  I am very pleased with the pics! 


The whole darned family, August 13, 2017:



Steve and I with our children Jeremy and Stephenie:



Steve and I with our grandchildren Marcus, Raelee and Aedan:



Just Steve and I... yes, I am very gray:



Raelee, Marcus and Aedan:




Marcus:


Aedan:


Raelee (who has "The Pose" down to a T):



Cheyenne, Jeremy, Marcus and Aedan with our dogs:



Cheyenne, Jeremy, Marcus and Aedan:




Cheyenne and Jeremy:



 Todd and Stephenie




I am super proud of these pics!  Thank you, thank you, Stephenie for taking them!!  

I am super proud of our little family.  We did good... our kids are happily married and we have awesome grandkids with manners, tender hearts and lots of love throughout all the families.  We did a lot of things right... 

What do you think of our pictures??

Sunday, August 13, 2017

Day 3 Post Infusion Update

Day 3 Post Infusion update: Yesterday afternoon, I got a horrific headache, tried to wait it out, but after a few hours I called the Drs office; I was told I described a classic post infusion headache, to take Tylenol & Benadryl and try to sleep it off. Slept 8 hours, woke to no headache! Today was terrific! Played all stinkin' day with our kids and grandkids. No fatigue, no brain fog and at 11:27 I am still awake. Had a great day. Starting to get very optimistic here... 😊 No pictures today, I still can't figure out how to get the pics from my phone to the blog... grrr...

Friday, August 11, 2017

Day 2 Post Infusion and T-Shirt Book Bags

Wow!  That is all I can say!  This infusion has taken away a lot of my fatigue and all of my brain fog!  I have high hopes!  Day 2 post IgG infusion is great!  I woke with very little (normal?) aches and pains, more energy than I have had in ages, zero brain fog and only a few itchies!  LOVIN' it!  Every time I stand, I have to pause - it is like I have a new body!  They may be on to something!  WHOOT!!

Yesterday, I felt so good I went to an OHCE (Oklahoma Health and Community Education) event where we took old t-shirts and made book bags!  Oh the fun we had!  Take a look at the pictures:








We had sooo much fun!!  

Here is a linky to go by - if you want to make t-shirt book bags:

T-Shirt Book Bags

The only thing we did different was to do everything with the right side out so that the fringe was showing.  LOVE these book bags - we are going to give them away at our county fair - with books of course!

I might be BACK!!  I am beginning to feel normal!  Scary, huh?  


YAY!!

Thursday, August 10, 2017

1st Ever IgG Infusion for Me... Day 1 Post Infusion

I woke yesterday at 5:30 am, showered, ate and hydrated.  111.5 oz fluids yesterday and I had 41.5 oz before I got to the infusion clinic.  Steve went with me because we had no idea what to expect.... I love that man!  

I came face to face with this:




They started the IV fine, but about 2 hours into it, I got a major headache.  My infusion nurse, Angie, came in and lowed from 50 to 45.  This helped.  About an hour later, my IV blew.  Back to the picture above... trying to find a vein... and with a lot of difficulty (4 more tries), they finally got another one started, but it looks like I will be getting a port in my near future. 

The vein they found was in my thumb!  I couldn't crochet or do anything fun.  See my infusion afghan?  My awesome daughter-in-law, Cheyenne, made it for me!  




I finished the infusions just fine with no other ill side effects. Last night, however, I developed a few small hives on my legs, and still have them today - but that is it!




As I was leaving, they re-explained side effects to me and said that I could experience some of them any time during the next 3-5 days and to call immediately - day or night if I did... 1) They need to oversee the side effects and 2) The side effects have to reported to the FDA right away.  *gasp*


Today I feel great!  I don't have the doggone severe fatigue that I normally do, my brainfog is gone, I can think clearly and though I still have hives (not many) I am otherwise physically much better than I have been.  Holding my breath this is exactly what I needed!

And finally, I came home to the most beautiful plants!  See the zebra bow??  YAY!!  I love the ivy - it has been years since I had one!  The gifts made my day!  💕





Tomorrow - on to other things.  Again, ICL is my life, so I have to blog about my life... and to share with others who may being going through the same things... I hope to find at least one other person that has Idiopathic CD+ Lymphocytopenia.  That would be amazing.     

The nurse just called - I will be getting a permanent port inserted in my chest within the next 2 weeks.  :-(
*reality strikes again* 

Wednesday, August 9, 2017

Liquid Gold Infusion #1 Day

Today is my first infusion day.  I am nervous.  I have no idea what expect except lots of nasty side effects for a few days.  You can read about them HERE...



I have done all the right things;  I have rested, I have hydrated, I drank V-8 (YUCK!) and I have drank poweraide.  Here's to an easy infusion... my first ever.

Apparently I will be doing an infusion every month for the rest of my life.  Scary?  Yes, absolutely!  For some reason I feel like it is the beginning of my demise.  😓

I know!  I know!  People have done it for years!  I don't think it is this infusion that is concerning me as much as the crash of necessary immune system that I need to survive!

I just cannot wrap my mind around this train wreck.  One thing crashes and another follows and another.  If this one can be fixed, fine, but since the ICL cannot be fixed, is this IgG infusion even worth getting?  I don't have the answer.  And it is a blood product from many people.  Every month, a blood product taken from MANY people.  That in itself is terrifying.  The price in itself is overwhelming!  Gads, so many things to fret over.  And I am sick - get this - with an awful sinus infection.  Go figure.


Steve will go with me this time.  He will stay to be sure things are going well, then run some errands in Tulsa.  I will be in the infusion clinic for at least 4 hours and up to 8.  They told me probably closer to 8 the first time.  I am to pack lunch, my V-8 (YUCK!), snacks and Powerade.  I am also to bring things to do; read, crochet, d/l a movie... just stuff to occupy my time.  

This'll be fun.

Not.  Looking.  Forward.  To.  This.

Tuesday, August 8, 2017

The Best Part of the Vacation

The best part of the entire Yellowstone Vacation was being with our family.  We had a blast together!


Aunt Sandra manning the maps:




Janine, Steve's cousin, was the one that initiated the idea of going to Yellowstone.  It kinda just grew on its own.  Steve and Janine were very close as kids.  Here they are at Crazy Horse:




Aunt Sandra and Uncle Weldon at Crazy Horse:




Uncle Weldon, Janine and Chappie (Janine's husband):




Rod at the Mid-America Air Museum in Liberal Kansas - it was awesome!  I don't know who he is with... I didn't go outside - but the inside museum was amazing... best air museum I have ever been to!  




Just a few of the airplane's on display:




And here is the beginning of the trip Steve, Aunt Sandra, Rod, Chappie, Janine and Uncle Weldon.  Mother was off somewhere and I took the picture:




Chappie and Rod with Ellis and Janine... 




Janine and Aunt Sandra:




Janine and Uncle Weldon:




Mother and Ellis:




 See mother and Rod way out there sitting with Ellis?




Steve and Mike chatting:




Joan, Aunt Sandra and Steve:




Uncle Weldon and his ice cream... oh my gosh, this man loves his ice cream!




And here is the whole gang in Jackson Hole, Wyoming!  Joan, Mike, Uncle Weldon, Aunt Sandra, Steve is behind Aunt Sandra, me, mother and Rod:



We had a great time hanging out together.  I can't wait to do it again!  We are planning a re-make of last years disastrous trip to Lake Wister.  This time, there won't be an accident and it will be great!  Can't wait to have the re-do so those memories will be good - not awful ones like they are now.

Tomorrow is my big day - Liquid Gold Infusion Day!  My first one ever.  Wish me luck!



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