Port Implanted... Installed... Whatever...

I made it!  The port is installed.  They say it will make my life so much easier - but I hate it.  Maybe I will start to like it after I see how easy it is to use.  Maybe I will like it after I realize they don't have to stick me so many times to take 32 vials of blood anymore.  Maybe I won't like it and never will.  They are drawing that blood right under my chin!  Am I supposed to be ok with that?  I dunno, but right this minute, I don't like it.

So for those of you getting a port implanted, here is what it looks like two days later:

The port is the large area at the bottom. I don't know what they did above, but there is a tiny place they cut there.  The port is stitched, glued then steri-stripped they said.  As you can see, I had a mild reaction to the Tagaderm covering, but it is just itchy not painful.

I was AWAKE the entire time. They gave me atavan which relaxed me and something else that was supposed to make me not know what was going on, but I knew everything.  I tried to get the dweeb that placed my nasal cannula in my nose to correct it.  One side was closing off my nostril instead of IN my nostril.  He said he did, but he didn't - in fact he made it worse.  They covered my head and made me look left.  Anyone that knows me knows I am claustrophobic as heck.  I made it through probably because of the atavan, but I still had to really breathe to calm that last nerve.  But I got through it.

The most painful part was getting the Novocaine shots in my chest.  That stung like the bejeebers - but only for a few seconds.  Once that took over, I could only feel movement, pushing and shoving (?), but no pain.  Fun stuffs I tell ya!  

Next time, I want the sleepy juice to work please?

The surgical site itself was a bit painful the first day - especially to eat!  Did you realize you use chest muscles to bite food?  Eating my sandwich hurt!  Lol... I have only taken extra strength TYLENOL (not generic - it is like taking water!) to ease the discomfort.  Other than that, I haven't needed anything for pain at all.  

So it is finished, I have it and I will deal with it.

This disease is not easy to deal with.  I won't gripe or complain, just say it is a pain in the last to deal with - on so many levels it isn't even funny.

And today, I am running some errands with hubby, sewing (wait until you see what I am making!) and resting some more.  Life is good even with my health sucks.

Hope everyone has a great holiday weekend!  Mine will be great - I am staying home after our errands today.  There's your update!  Love ya!

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

  
  
  

  Healthy	500 - 1,660
  Borderline Low	350 - 500
  Low	200 - 350
  Extremely Dangerous	0 - 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.

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.  

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!!  

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??

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...

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!!