Craft Show 181 Ranch

I can sew all day long.  I can break as I need and walk right back in to my sewing after a rest.  I have sewn and fallen in love with so many things that I make multiples!  What the heck am I going to do with all of them?  I only have so many friends and family... so away in a tote for ‘someday’.  My partner in crime, Sharon, was the same way....  so both of us (very broken) buddies decide we will sell our wares at a very large craft show in December! 🎄  😳

I have been playing with ways to market the stuff.  Yes, this far in advance!  I also work the fair in September, so I am preparing for both.  Anyhoo, Ziplocks seem to work well for displaying (and keeping dirty hands off) and I put them on the clip slacks hangers knowing my handsome hubby will have to help us come up with a display.

I started looking at those hangers online as I needed some more - man they are expensive!  Then I happened across someone on our Facebook Market Place selling a huge box of those hangers for $30.  Steve took me to get them and we ended up with a very cool display from the same place that will work for one wall - also for $30.  He can use this same pattern to build two more and space those dowell rods further apart to accommodate our bigger things!   

This is what I ended up playing with today!  Isn’t it awesome?!?  Go us!  🎉

Now, please pray Sharon and I both stay well so we can do the craft show!  😂

Climbing Mountains

But for how long?

Day 2 of OshKosh.  My belly button fell out!  😳

Now stop laughing!!  😂😂

I have had a long struggle back from my bleed.  I am doing ok, I just don’t have the stamina that I did even before the bleed. 

Not wanting to spoil the trip in Wisconsin for everyone, I kept quiet and did the best I could, but it was not a simple task - as I not only had less energy than normal, but I felt weird as well.  It felt like some things “fell” inside and were displaced.  I finally called the Dr yesterday and will go in Monday.  We think it is a surgical hernia, which, if it is, will require more surgery.  😢  I have no energy for that.

I also have a hip that gives me trouble, and has for many years.  I started thinking it was time to get a steroid shot in it - as was suggested many years ago when I went to the orthopedist.  He said I had very little cartilage but I was too young to do anything but a steroid shot... how long ago was that, anyway?... Let’s see... Jeremy was two... or three... and he is now 36...  Yep, it may be time to see about that shot... 😂  Appointment made for a week and a half away.  Oh, and with the blood disorder, I don’t think I can have a steroid shot either.  Will beg Dr #1 before going to Dr #2.

I constantly have physical ‘issues’; lupus causes problems with my kidneys and with my connective tissues, so the hip is likely many years of lupus.  The blood disorders, the sarcoidosis, the Sjogren’s, the lupus... all taking the fun out of my life.

I try to stay strong and healthy, to not talk about my physical life, it always seems to come back to it... because... this IS my life... the mountain keeps getting higher and the desire to climb is dwindling.  In fact, I very nearly don’t give a damn.

My poor husband.  He is so strong but I hate that so much falls on him.  I love him for everything he is.  He does not deserve me and my struggles.  It is a sad state of affairs;  I feel guilty and he continues to be my rock.  We do this together, but he gets the raw end of the deal.

The reality is it gets harder every day, for both of us.

OshKosh Trip

Got got out late, but we arrived safe and sound.

We had our traditional beginnings of the trip:

Aunt and Uncle had a bit of a problem, but Aunt and Steve got it taken care of!


Finally arrived at the little campground!  Pony Express in Marysville, Missouri.  We will be coming back.  Wonderful campground, great people!

Got all set up, cooked supper and rested.

We are all 4 together and we are still hooked up to our truck.  BIG thunder out there, storms coming through to haul the 100 degree temps out.  Looking forward to cooler air.  Gonna sleep good with the rain.  Night all.  ❤️

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WEDNESDAY, DECEMBER 26, 2018

Here We Go Again

WEDNESDAY, DECEMBER 26, 2018Here We Go Again

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.  

Blooms in our Yard

Some things are just too good to not to share.

                                  
My daughter showed me years ago, even backs are pretty.


               

These make me smile.

Louisiana Has My Heart

   

 

I just saw this picture from Morgan City, where we used to live.  A tropical storm is bearing down on them.  I don’t miss that part of our lives there.  In fact, if it is possible, since Hurricane Andrew, It seems I have PTSD; I get anxious, even here living in Oklahoma, when a storm forms, and my worrying gets worse once it enters the gulf. 

We still have friends there, so even if we don’t talk regularly, we do when storms approach.  We care about them.  We left that life behind, but we didn’t forget the wonderful people, our dear friends and bayou life.

The decision to move from Louisiana was not taken lightly.  We had lived there 32 years.  We grew into adults there, had made it our home, raised our children there and had many very, dear friends.  But God has written our story.  He knew I needed to be in Oklahoma to get the correct diagnosis.  He put it into our hearts that moving here was a necessity.  We had no idea why then, but later realized God always looks out for us, we just have to listen.

Within 2 years of moving to Oklahoma, one Dr diagnosed me, another agreed to oversee me and make decisions I don’t know how to make about what is best for my health.  He made the perfect circumstances for Steve to retire, after my diagnosis, so he could be with me through my medical journey.  This isn’t an easy life.  I can’t get involved like I used to be, and we had moved far out in the country prior to my diagnosis.  We love it here, but it does get lonesome. 

The reality is that with my diagnosis, the less exposure to the public, the safer I am.  So, having left my cherished friends behind, starting life in the country, in another state, prior to my diagnosis leaves me missing those steadfast friends we left behind.  It has been difficult to make new friends here, but I do have one very dear friend and sewing buddy.  And thankfully Steve and I are best friends.  

I couldn’t walk this journey without those we left behind and those we have gained.  I couldn’t do it without my Oklahoma medical team and not without my precious hubby. The strength I had gained prior to our move was forged by deep friendships and southern (soggy) roots.

And I certainly couldn’t be on this journey without God’s guidance.  He has never steered me wrong.


I took this picture last week if God’s promise.

Stay strong my southern buddies.  I love you.  And God loves you more.

The Bleed

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.