Friday, March 29, 2019

Very Specific

 Specific prayer really does bring specific results.  I'm more convinced of that more than ever!

  I've changed up my prayer time about 6 months ago.  Instead of my notebook I'm using 3x5 cards with very specifics.  I'll have to post about it sometime.  I've also been reading a book about praying for my husband.  The author talks about specific things we should be praying about concerning our husbands.  For instance, praying about his priorities.

  4 years ago, my husband also became my Pastor.  Pretty weird!  But in a good sort of way. :o)  Being a Pastor means he wears many, many hats.  And after the month we've had, his to-do list has grown abundantly.  I realized that when he woke up in the morning he was darting here and there trying to complete everything and laying his head on his pillow at night thinking, "What did I accomplish today?"  Ever had a day like that?  That's Mommahood, isn't it? :o)

So that morning during my prayer time, I prayed for my sweet Patrick to have wisdom what is his priority for the day.  I prayed specifically that God would help him put "first things first."

When my sweetie woke up he headed straight for his office for devotions and study time.  A few hours later he came out and said, "I'm having a really great morning and accomplishing so much.  I'm really purposing to "put first things first!"  He had no idea I had prayed those specific words for him!  Specific prayer does bring specific results!!

Wednesday, March 27, 2019

On the Mend


 I didn't quite recover last week like I intended.  I felt horrible.  And wasn't functioning so well.  Patrick decided to ask his Mom if he could pick her up for the week and have her come help out at home.  So glad she said "Yes!"

She has been such a blessing cooking and cleaning and doing laundry.  Pretty amazing!  Brenna has even talked her in to a game here and there.  She brought one with her called "Rockin' Dice"  It is really fun!



And while I've rested and recuperated, I've noticed a big difference in my energy levels and my headaches are nearly gone.  So thankful for this time to rest!  Although, I have to admit....I'm getting the quilting bug.  And with a new grandbaby ready to arrive soon, I can't help but look at my stash.  A new quilt is hopefully on its way soon!

Thursday, March 21, 2019

21st Birthday Girl


My Elisabeth turned 21 last week.  21!!    How blessed I am to have this amazing daughter.  She's selfless, diligent, honoring to us and to the Lord....we are so grateful for our Beth!



It was a different kind of celebration for her this year, but she took it in stride and made the best of it.  It was a great day!

 A wonderful family lunch of Baked Potatoes and Chili made by Brenna!



Grandma got in lots of snuggles with Liberty!




 Liberty and her Great-Great Grandmother (AKA Mam-maw)





I love having my children near!

 Liberty and Grandpa.  Yes, he won her heart!

My boys taught my Mom the art of nighttime spider hunting. Scary!  She's a brave woman!!


My parents took the birthday girl out for steak for her dinner.  It's her favorite! 

I love you my Beth!  So thankful for you!  Happy 21st!

Wednesday, March 20, 2019

What I've learned from my loading dose of IVIG


Wow, what a week this past week has been!  Since the diagnosis of Myasthenia Gravis and the doctor ordering IVIG treatments, it has been a whirlwind!

I've had some questions about what exactly is IVIG.  I found this information on Myasthenia Gravis News website. 
 Intravenous immunoglobulin (IVIG) is a compound that consists of immune globulins (immune proteins) that are usually administered into the bloodstream. It is used to treat patients with severe or rapidly worsening myasthenia gravis (MG).Autoantibodies in the blood that target acetylcholine receptors are the key problem in myasthenia gravis. IVIG consists of immune globulins collected from donors and acts to destroy and neutralize these autoantibodies in the bloodstream and block the production of new autoantibodies.

It has been 10 days since my first infusion.  I have learned much over the past few days, so I thought I would share.

~IVIG is very strong.  Very.  I have bruising where the infusions entered and traveled up my veins.  One nurse said that I don't tolerate it very well and it burned my veins.  It's still sore on my arms.  
~I have adverse reactions to IVIG.  Which translates to migraines, which leads to vomiting.  Not fun.  I have a great doctor though and after having that kind of reaction after the first dose, he called in an IV steroid to be administered before treatment.  That helped a ton!
~In home nursing care is amazing.  My insurance company and doctor use Option Care.  The nurses that came to my home were very professional, very skilled and very caring.  The Pharmacist with Option Care was also very attentive and even called again to check on me today.  When they knew I needed the IV steroid the very next morning before my infusion, they drove the medication up from St. Pete and delivered it to my house at 9 pm that night.  How compassionate!
~IVIG doesn't leave your system very quickly.  My last infusion was on Saturday.  Sunday I thought I was doing okay, although tired and not feeling great.  Monday I woke up very sick.  I had the migraine back and felt horrible.  Tuesday was a little better. I think it's just going to take a while to get used to this.
~My parents and Mam-maw are amazing.  When I started feeling horrible I told Patrick that I needed my Mom.  They came earlier than planned.  Mom washed my hair for me.  Mam-maw cooked.  Dad entertained the children.  There is something about knowing your kids are taken care of that makes things easier to handle.  And we just happened to have a birthday in the midst.  My family is amazing and I miss them already.
~My kids knew I was hurting and I hate that.  I had fresh wildflowers by my bedside and table each day.  I had pictures colored for me.  And sweet words of I love you.
~My church family is wonderful.  I've had flowers, meals galore, hugs, and gift bags and texts... you never know how much little acts of kindness means to someone that is hurting.
~My husband is my best friend.  I realize his life is taking care of me.  And he does it with love.  I am so thankful for him!

So, the plan is next month to do a 2 day infusion.  Same with the month after that.  And the month after.  We'll do it for as long as I see results.  Which so far haven't happened yet.  The pharmacist said that some people don't see results for 6-8 weeks.  So we are approaching this with prayer.

Thank you so much for those that have prayed for me!  Now, it's off to a new week!  

Monday, March 11, 2019

Here We Go!

Today started my first of five days of IVIG treatment. The nurse came early this morning and started my IV right away and gave me Tylenol and Benadryl.  After 3 hours we had the dosage done. I'm feeling the normal head achy and fatigue that comes with this treatment.  Praying this will be a big help. Thank you for the prayers!

Sunday, March 10, 2019

Quick Road Trip

Elisabeth, Tabitha, Brenna and I had a quick overnight road trip away to be a part of the ladies conference at Central Baptist Church in West Palm Beach.  Pastor Fuentes asked if we could come and sing for them during the conference.  We decided that this was the perfect time for us to plan a quick getaway!

First stop?  Subway for cookies and cokes of course!


Then, we decided that we would take some backroads and find an adventure.  And we sure did!  We passed by one of Beth's favorite places....it's a spot on Hwy 27 that has a ton of horse ranches.  And what do you know, they just happened to have a HUGE horse event.  We got out and walked around and watched some of them.  It's just like God to give us that extra special treat!



After turning a 4 1/2 hour trip into 9 hours with lots of thrift stores and snacks along the way, we finally made it to West Palm.  My friend, Rose and some friends from Central Baptist joined us at the taco truck for dinner.  It was sooo yummy!  as usual.  I don't see how anyone could visit West Palm and not go to a taco truck!



At the hotel we played games, laughed a ton and shared heart to heart talks.  I sure do love my time with these girls!


The next day it was on to the conference.  It was amazing!   Central Baptist did a fantastic job!  From the theme, to the delicious lunch and wonderful speakers, it really was a great day.  We were able to sing 6 songs together.  I am so blessed to have these 3 by my side.  It's a joy to serve Jesus!

Thursday, March 7, 2019

A diagnosis and an new treatment


My life took an unexpected turn  when I began to feel ill in October 2012.  Many of you that read my blog were with me then and prayed for me.  I am truly blessed to have you in my life!  Even though our life took on some major changes, this was not unexpected to God and He was always in control.

After coming off the mission field, going to some of the best hospitals in the country and having IV treatments for 4 months, we thought I was on the road to recovery. We planted ourselves in High Springs and started VSIBC.  But, unfortunately my pain was not gone.  I've seen many doctors while living in this area.  Last year I was referred to a Neuromuscular Physician that started to wonder if I had a Neurological disorder.  After much testing, he feels that I have an atypical form of Myasthenia Gravis.  This would explain my symptoms.

He's tried a couple of different medications, but without relief.  He decided to try a more intense therapy, but warned me that it is hard to get insurance approval.  When I received the call that the request was denied, I was disappointed.  My doctor appealed the denial and I got a call Monday that I've been approved!  My insurance is going to pay 100% for IVIG treatments for this year that should total over $237,000.  It's just like God to move in an amazing way!  And beyond our belief!

So this Monday I will have a Home Health Nurse come 5 days in a row to administer intravenous immunoglobulin.  They will come for 2 days in the months following. Apparently the results are amazing and I've heard people say that it is liquid gold for someone with MG.

So thankful that God's got this!  He's so good to me!

Monday, March 4, 2019

Orchard at Storybook Farms


Several months ago we had a logging company come and take down several of our big trees.  Then, we had another company come through to clear it.  Well, at least they tried to clear it.  Unfortunately, they didn't do the best job.  It was fun trying to figure out what to do with this partially cleared/disturbed piece of property. :o)  We played around with the idea of making it into a basketball court or volleyball court.  But, in the end we decided to plant an orchard....or at least try!  You know us and plants....


First, we needed to completely clear it.  The kids and I worked an hour on the left side.  It was tiring!!


Then, someone asked if they could store their tractor at our place for a month.  They said we could use it all we want.  Isn't that just like God?!  So, my hubby had fun driving the tractor around, and my orchard was cleared....somewhat!
Micah loved watching.  He said that one day he was going to be a Farmer.  I asked him what he would have on his farm.  He looked at me like the answer was obvious and said, "Tractors!!"


The dirt in that area is still a little sandy and a little clay.  Good thing we have LOTS of rabbit manure for fertilizer!


To get rid of the stumps Patrick decided to burn them.  It was amazing!


After burning continuosly for 2 days, there was a big pit.  You could even see where the roots had burned out.


We're planning to transplant our 2 apple trees, 2 pomegranates, 4 blueberries, and 2 chinese honey oranges. Then, we'll plant an olive tree my parents just bought Patrick.  And also we'll plant the pear that we just bought.
I think we'll need a couple of peach trees for sure.  And a plum!  This is so fun!

So, hopefully this will one day be our "Orchard at Storybook Farms." That has a nice ring to it!