Saturday, January 12, 2019

The Rest of the Story...

I can't tell you how many times in the last three weeks I thought I had taken my last breath.  This has been the hardest ordeal in my life to come back from.  A GI bleed that took all my blood and more.

I think it all started on December 17, 2018.  I went to the hospital, fainted in the ER, fast tracked to trauma, was admitted, and they thought the GI bleed had corrected itself.  I came home a few days later, was home a night or two, started bleeding again and was readmitted to the hospital.  I went through multiple tests; 2 CATA (CAT scan angiogram), then a Red Blood Cell Nuclear Scan specifically to (finally) locate the bleed, then an Angiogram to coil and cauterize the bleed.  It ended up being behind my liver in the GI tract.  I lost a lot more blood and had many transfusions, but after the angiogram I went unconscious and they moved me to ICU for the night.  The next day I went into a regular room and was sent home with no more bleeding a day or so later.  I was home 2 nights.

New Years Day, I was just starting to recover from all the testing/blood loss, when lo and behold, I started bleeding again - I had been home two days.  Back to the hospital again the Dr informed me I had to have a colectomy.  He would determine how severe when he got in there, but thought it would just be the bleeding side.  I had a right hemicolectomy (right side of my bowel was removed) and finally the bleeding has stopped.  I am home.  I think I came home on Jan 8th.  My days and weeks are all messed up...

I am sure I was weak from 14 units of blood prior to the surgery.  The blood was irradiated because I cannot fight white blood cells with my immune deficiency, so I got only whole red blood cells, which also means I got no antibodies as the irradiated blood takes those away as well.  And since I had none of my own blood left, I had no IgIV antibodies left.

My Immunologist was out of the country in south Africa.  I missed his steadfast confidence.  My Drs were able to contact him and NIH for advice, and I got IgIV the night before surgery.  He will be back on the 28 of January and I am his first patient.  We have a lot to catch up on.

I didn't know even one Dr who oversaw my care while I was in St John's hospital, but every Dr was top notch.  Every nurse was as well - well, except Shannon.  Shannon and I will never see eye to eye.  She is not worth telling that story.  Other than her, I had some pretty incredible Drs, nurses and aids.  

The family medical group that oversaw my care was from IHI in Tulsa.  IHI = In His Image.  Can you imagine?  They prayed with me every visit.  I loved them and I loved having their prayers with every procedure.

I would not be alive if I hadn't had thousands of prayers coming from all parts of the world.  I asked on Facebook to be added to prayer lists and was put on dozens of prayer lists.  I kept getting messages more were praying for me.  What an incredible feeling.  Knowing people were praying for my healing.

That is all to this story.  3 long, very bloody, terrifying weeks.  And I am alive to tell you about it.  Praise God.  And I am getting better every day; stronger and finally determined to get through this.  2 weeks ago, I wasn't.

And one amazing man that was there encouraging me every step of the way.  I love you, Steve.  Thank you for being my rock and encourager when I wanted to toss in the towel.

Wednesday, December 26, 2018

More Blood...

Yep, here we go again.  6th unit of blood in a week.  😳

Honestly, I am just so weak and tired...  Hemoocrit is... I don’t remember... low enough for more blood... potassium bottomed out last night as well, started having awful muscle cramps...  of course I am severely anemic, have dozens of needle punctures - I look beat up.  I have been bedridden for over a week now so my strength is sapped.  🛌

Ya’ll...  I am tired of swimming upstream, but I am still swimmin’.  🐠

Praying for answers and healing if it is God’s will.

Just continue to pray please.

Have I said I love this man?  He continues to be my rock.  

Sunday, December 23, 2018


My view this week has been pretty much this - except with medical staff; nurses and Drs.  I prefer this scene so I am sharing it.  I have been hospitalized in serious condition... but more on that in a bit.

The last few days have made me do some serious thinking.  I miss my blog and sharing my life - even though it seems pretty boring to everyone else, it is amazingly content for me.  And we have done some pretty great things that I will just have to catch you up on this year, so be expecting that during these Oklahoma cold, wintery months. 

So what gave me this change of thought?

Here goes... So this is nothing related to ICL or PI, but I just barely missed losing my life this week. Monday, at 2pm I went home from my daughter’s to eat a sandwich. She lives 2.5 miles from me. I went back to her place to help finish packing orders (she has a soap business) and came back home at 4pm.
At 4:15 I went to the restroom and filled the toilet with bright red blood. We live far out in the country, so my hubby drove 45 minutes to the ER. I fainted as I walked up to the ER window, woke to the the rapid response team moving me to a stretcher, seeing lots of blood. I was fast tracked to trauma, filled 3 bedpans with blood, 2 partials with blood and I have little recollection from there on.
Somehow I was admitted, continued to bleed through Thursday morning. I have received at least 4 units of radiated blood and had an upper Gi which was clear.
I have bled more blood than I thought a person had, they have had rapid response in for my total loss of consciousness several times, but finally, I am stable. My hemocrit at last count was 8.1. Waiting for the next count, but hopefully it is now stable - no blood for 24 hours.
They did a lower GI today; it was clear with only diverticulosis, but no infection or bleed. They believe this was a diverticular bleedout that (hopefully) has resolved itself.
I have never been so scared in my life. Even when conscious all I could see was more blood coming. I was bleeding to death with no control whatsoever. I was in absolutely no pain.  I lost over half my blood supply in just a few short hours Monday-Wednesdaay.  I checked out of the hospital with a hemacrit level of 8.3 on Thursday.

We can go south in a heartbeat, friends. This had nothing to do with ICL, Hypogammaglobulinanemia, or PI, but getting STAT blood, trauma teams racing with no thought to immunodeficiency and soooo many people in and out, touching, moving, transporting, procedures, and seldom masks... all of this absolutely does have something to do with ICL and immunodeficiencies.
Every medical person I have seen since I have been conscious has been asked if they know about PI and asked to read up on it. I have corrected numerous MEDICAL staff from auto-immune to immunodeficiency. They are freaking CLUELESS!  Please try to educate them. Specifically ASK each of them to read up on PI’s (Primary Immunodeficiencies).

Stay safe loved ones.  Life is fragile. I am stable now and will take it very easy for the holidays. You all do the same. I just want to be safe at home with my loves in my little corner of the world. I don’t even care if I celebrate Christmas.

We are in this together. Keep on swimming no matter how the current flows!  We all have our crosses to bear.  🐠 
Love you all.

The picture above is your Christmas card - I am laying low and enjoying life.  Merry Christmas, Happy Hanukkah and many blessings to you and yours.  

Monday, October 9, 2017

Same, Same, but Different Day

A soul baring day.  I am sick. Sick of the constant headache, sick of the sinus infection that gives it to me, sick of the tenderness in my chest from the Power Port, sick of being sick all the flipping time, sick of not being able to enjoy a weekend out, sick of the medical bills and sick of being in the position I am in with no future without it.  I am just done.  I have been struggling for weeks.

The sudden 10 day hospital stay was the beginning, then the at home IV antibiotics for another week.  After that the IgG infusion request to the insurance with the immediate confirmation I needed it.  A week later, I started the infusions; every 28 days, 6+ hours, in the Drs office... getting liquid gold.  Every drip I see $$$$ going into my veins.  I start getting ready for the infusion 4 days early drinking crap I don't want; V-8, sugar free Powerade, 100+ oz of water every day for 4 days.  Then after the infusion a week of who knows what kind of side effects. 

No stress?  Ha!  Try getting these bills and figuring out how to pay them.  Sick of that as well.  

I KNOW people have it worse than me.  I know that.  I keep telling myself (and everyone else reminds me... you know, friends...) that I am lucky and people have worse things.  My 'friend' reminded me her daughter had ovarian cancer and *never* complained.  God cured her.  I should be grateful, but for now, I just need to figure out how to wrap my mind around this life; this life that keeps changing, this solid chunk of metal in my chest, this plastic tubing snaking up and over my collar bone; reality striking me from every which way again and again.  I am over it.  I am sick of it.  I want to be well.

But I can't.  I will never be well.

That sucks.

And all of this started because I went to my 40th High School Reunion and enjoyed it.  Now I am paying for it.  More on the reunion later.  Going back to bed for now.  

Tomorrow will be better.  This blog is about my reality.  I have lots of good days, but the bad days really suck rocks.

Sunday, September 24, 2017

Holidays On Parade 2017

 Since I have been so lax at blogging for sometime now, I will just have to back up some days and catch up with the fun stuffs that has happened while I was being a slacker.

In May of every year, our Oklahoma Home and Community Education (OHCE) group has a all day event.  We have lots of crafty types of demonstrations, taste testing, food and awesome decorations.

This year,  the theme was "Once Upon an Apron".  Everyone was encouraged to wear an apron; either a mom's apron, a treasured apron or a new apron.  We made aprons for dish soap bottles (remember those?) and decorated the tables with them.  The decorations came out absolutely adorable!  It took a while to dress all those dish soap bottles... 

And then put them all on the tables:

We had a friend who collects aprons give an apron history lesson which, 
by the way, was very enlightening!

She had some really adorable aprons!

We had lots of demonstrations on how to make different crafts:

Everyone brought aprons to display:

And as I said, we asked everyone to wear aprons...

I love the lady below!  Her name is Rose and she is always wearing a hat.  She has my heart.  If you know me, you know I love hats.  I just never seem to feel comfy wearing them - but she always has one on.  She just makes me smile.

We also had a raffle and had some awesome donations:

We had a great time.  We set it up all day on Monday, and the event is on Tuesday.  Wayne and Steve are always helping with the set up.  Wayne is our cook - he smokes meat for our event.  This year, Steve helped Wayne carry it in, slice the meat and do refills.  I think they might have even had fun visiting... but they both said learned WAY more about aprons than either of them cared to know.

 And the winners of the best aprons were:

Oldest apron (left) was over 100 years old, and cutest was on the right.  

Now don't you wish you would have been there?

Friday, September 22, 2017

Thankful - Word of the Day

4.5 weeks after my 1st infusion; with port in place I go in again.  Today I am a little nervous - my port is not completely healed, still a bit tender, I have an awful sinus infection and the first infusion gave me an awful headache.  Not looking forward to a migraine on top of a sinus headache.

My infusion specialist told me to take 2 Benadryl 😳 And 2 Tylenol to premedicate.  I should be a zombie soon.  I also have some numbing cream to put on the port site, but she said that it would be tender for months, about the time it heals, they puncture it again... and the chest area is tender... so... I will hold my breath, suck it up and deal with it!  And be thankful I can even get help with my IgG levels.

^^^ THAT was supposed to be posted Monday - not sure what happened, but it is over!  I did fine.  No migraine, no major side effects on Monday - just sleepy.  Was told to continue Benadry (2) for 24 hours after the end of my infusion.  Tuesday was rough, Wednesday I felt like a dump truck ran me over;  severe pain, confusion, awful flu like aches... just a rough day all together.  I asked my immune deficiency group about it and they said, "Normal.  May last a week."  Great.  I literally could not move for the entire day except to move from the recliner to the bed.  And there I stayed.

Thursday I woke and felt shaken, but better.   I don't even know how to describe it except to say, shaken. Stunned.  Shocked. Recovering.  All day, I took it easy and went to the sewing room and did what I felt like doing and rested the rest of the time.  Easy day.

Today, I woke much better, went gung-ho to a stenciling class and half way through crashed.

I struggled through it, left, met a friend, ate lunch, took extra strength Excedrin and felt well enough to go to a quilt show... for the first 45 minutes.  Struggled again.  Enjoyed every moment except not knowing what to expect physically and my body randomly rebelling.  Thankfully they had a place to pause and rest as needed and I got through the entire show.  But... *sigh*  

A description of what I feel like; the Energizer Bunny... going, going, going.  Then WHACK!  A fly swatter slaps me down.  I am stunned... shocked... but eventually I shake it off, recover and I am an Energizer Bunny again... then I get low on batteries... waddle, run, waddle, run, waddle, collapse, waddle, run...

Will I ever figure this out?  I sure hope so.  Overall the infusions seem to work, it is getting past the first few days that kicks my last.  I do have to learn to be patient, but patience is not my strong point... and resting definitely isn't.

The Stencil class?  Awesome!  Here is a stencil I made:

I am so thankful for people who donate their time to teach me more crafty stuffs.  Our instructors today were meticulous, organized and very informative.  I had a blast and I love my Thankful sign... and it was so stinking easy!  Someone just had to teach me how to do it.

I am thankful for a place to vent as well.  At least my friends and family don't have to hear it as much.  My hubby does though - but I think he sees it, too.  And sometimes I think we are both scared.  Neither one of us knows what to expect.

I love that man!  He takes such good, considerate care of me.  He is a sweetheart.  I am very thankful for him.  

And I am thankful for the 10,000 people who have given blood so I can get my IgG plasma infusion every single month.  10,000 people for every single infusion.  😳

Have you given blood today?  

And with that, I am thankful for every single day I am given. 

Thursday, September 7, 2017

Sew-Therapy Fun

Well, as I said, I have been busy sewing.  Since the infusion I had 3 weeks ago, I can't tell you the difference I feel.  Some of my old self is coming back!  Specifically, my old crafty self!  Maybe since I am not fighting tooth and nail to live, I can play now!  Several things I have noticed since my IgIV infusion;  more energy!  Now that doesn't mean I don't tire out easily - I do.  But I don't struggle all day long to catch a second wind - now I can go, stop, go, rest and go then sleep.  Go wasn't much of an option before the infusion!  Secondly, this may sound odd, but I have always had extremely dry skin.  Now I was with an oily face.  EWE!  What is up with that?  I have no earthly idea, but I would guess, since my body isn't fighting everything it can act 'normally' now.  My brain fog is still gone, and I am still seeing in Technicolor... (remember those days?).  And lastly, I have actually smelled something 3 times!  WHOOT!  I will hope for more smells.  You can't imagine what life is like with no smells...

Whatever has caused the changes, I am all for it.  Maybe IgG is exactly what will make me ok again.

Ok, so here it is for my port people, one week out exactly.  The bruising is starting to fade, the steri-strips are falling off and I am fine.  Only minorly achy, but nothing major.  No Tylenol for several days now and only because I overdid things then.  Easy peasy.  

Don't worry - my boob is way out of that picture, but for some reason it doesn't feel like it.  Maybe it is because I am baring my chest... lol... 

Still don't like the port, but overall, it isn't so bad.  So that is my medical journal/update.  

Now on to fun stuffs.  Remember the cat wall hanging?  It is finished!

Didn't it come out pretty stinking cute?

And I went to a thrift store and bought this man's shirt.  I loved the colors - you know me and blues with yellows = LOVE.

I brought the shirt home and started playing with it: I cut the top off and added some fabric scraps from my living room pillows:

I cut the pocket off and moved it after decorating it.  The embroidery on the upper left was already o the pocket.  I left it, added yellow behind the original pocket and added zigzag as well:

This is the back of the finished apron.  

Fun stuffs!

Saturday, September 2, 2017


I am healing nicely from the port.  To keep my mind off of it I have to stay busy.  Ok, let's be honest, I have to stay busy all the time.  For some reason, I feel if I rest a moment I am wasting precious time.  So I am always busy; sewing, crocheting, cleaning, laundry, quilting, gardening... whatever.  I have been this way all my life, like the energizer bunny... going, going, going until I drop.  Snooze, wake and go again.

So today I am working on fair projects!  I am having a nice time doing so.  One project is a wall hanging:  

Not finished yet, but close.  The triangles on the left will be a fish with bones.  I didn't have any white embroidery floss so I cannot do that today.  All I have to do after that is bind it and add something to hang it from on the back!

I went shopping at a thrift store 2 days ago (yes, the day after surgery) and found this nice, big man's shirt - the colors were bright and cheerful and it was only $3:

Well, today, I cut it up and played around with scraps and came up with this apron:

The pocket on the left was actually the pocket from the shirt.  I just cut a larger yellow piece of fabric to put behind it and then trimmed it with the flowery fabric from the waistband.  I still have to sew it together and now that I am looking at it, I will probably flip the pocket to where the blue line matches the apron blue line.  I think I might like this!!  Cool, huh?  

Oh, I would love to say I came up with this idea on my own, but not true!  HERE is where I found it.

I am working on a few other projects; not going to tell you yet, but I will give you a few hints:  

There are moments when I find the old me and I love it.  Since the infusion, I seem to have a few more of those moments.  I hope I am not dreaming this up.

And I have since found out that the 'rash' around my port surgery is actually a Tegaderm allergy.  Don't really know what that means, but like I said before, it is just itchy not painful.

So today was a rough day in other ways, but I just kept really, really busy.  I cannot elaborate on why, and I always feel guilty continuously asking form prayers, but we need them.  God knows right where to place those blessings.  Please keep us in prayer in the coming week.

Off to force myself to rest, but first, I will indulge in the yummy, "no sugar added" ice cream.  It really IS delicious.  

Friday, September 1, 2017

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!

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.  


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!!  

Singapore Memory Project