I wouldn’t be “real” if I didn’t blog and share where I’m at today. Basically it comes down to one thing…I’m human. I really hate this sometimes. I have this great thing called a relationship with God and I love Him so much and have such a passion inside for sharing with others His love and what He has been doing in my life lately. But He must be chiseling away another layer because I feel like I have hit another brick wall. How do I know? I’m grumpy. I would like to give it a name and say, “Grumpy Gus is here again” but I’m afraid I’d be committed to a psyche ward somewhere. I finished my blog yesterday really trying to update what happened and yet there were things I thought of later that I felt I should have included but then that’s followed by the thought that I’m glad I didn’t because then it would seem like a downer. Today, I’m tired of thinking. I’m basically tired of everything. It began yesterday with this nagging feeling of being bummed with having another IV in. There is this raging battle going on inside. One side wants the IV because I know its my best defense and I want my life back, to be put it frankly. But there is this other side that just hates to be limited or inconvenienced in any way, and well, the last 6 months have been pretty inconvenient. So, if I seem too “happy” about getting an IV its me trying to be positive that we are doing the strongest and most that we can do which means getting well, right? And if I seem like I complain a lot, well, that’s me tired of this song and dance.
The girls were at VBS this morning and I had a morning that I wasn’t chasing something medically and I was able to put on some music and unbury the desk in the office that has bills that probably need paying. I used to be able to do that with people home but now, not being able to think about more than one thing at a time and getting overwhelmed easily can’t do it without Grumpy Gus showing up. I do best when left alone I guess, though Grumpy Gus tries to knock on the door….
Saturday morning....
Last night I went to the girls VBS program. I was so grumpy when I went. The last two days have been so full. Yesterday, the girls had VBS in the morning. They came home and ate lunch and I did my IV and then we had to leave to get the dressing changed on my PICC line. Quality Infusion was busy and when its busy it really isn't a place for the girls. They changed the dressing and went to draw blood for labs and couldn't draw blood out of the PICC, something that was supposed to be an advantage to having a Power PICC. So, they had to stick me again, twice, to get blood for labs. This may not seem like a big thing but I have reached my limits on being stuck with needles. There was this lady there that talked non stop from the time we walked in the door to the time we left, loudly. My first thought is she is a very lonely person. The Labcorp tech, who is shares the room with Quality Infusion, listened intently the entire time to her. My thought was, "He is a better Christian then I am" because I don't think I could have. Maybe I could if I wasn't there for other things and didn't have my girls there, but....
For the most part I was able to tune her out but by the time we left I was done. That what Chris and I call it when I have nothing left. What little energy I had was used up to contain myself from climbing the walls with all that was going on in that room. Its like a kid who is over stimulated.
The dressing change took longer then it should have and we were pushing it to get to a private lesson arranged for Becka with her coach. We got in the car, I start it, and it beeps at me. I look down and it says 0 miles to empty....no gas. Okay, we were going to be on time. At this point I would be happy just to make it to a gas station. Becka starts praying in the back seat. We made it to a gas station and I put in enough gas to get us home and off we went. We made it to the private lesson. Her coach had her show me a skill that Becka is able to do that is a level 4 skill and she is on a level 2-3 team. That was pretty cool. She struggles with vault but its all mental. She can do it but she has to decide she wants to do it, and then there will be no stopping her. Her coach, again, mentioned that Becka has both talent and a good work ethic. Pretty cool.
We leave there to rush home to eat because the girls have their VBS program tonight. Something I didn't know about when I scheduled the private lesson. By the time we got home I was fried. Two days of go, go, go and I'm done and grumpy.
I go to grab the video camera and it won't work which further frustrates me. I questioned myself as I walked out the door if I'm just not cut out to be a pastor's wife because it frustrates me in moments like this where the camera doesn't work and he is at church and can't help me. But then I thought, "if I were healthy it might be a different story."
I walk into the church feeling so alone and wanting to be left alone because I'm grumpy and don't want to answer any questions. I look for a seat and walk up close so I can see and they all appear to be taken. One of our sweet ladies told me to sit behind her but there was a purse. She moves it and says I can sit there. I did but quickly regretted it as the lady that had them saved came with her family, and though I felt there was plenty of room, I felt it was awkward. The ladies in front of me asked how I was doing, and, feeling safe with them, I mentioned I was hanging in there but I was grumpy. I regretted sharing that as soon as I did. I'm being real and honest but I'm afraid it comes across as just being negative.
The program was fabulous! I was blown away by my girls and there is nothing like listening to over 200 kiddos sing for God. I cried, as I usually do during these programs, as the spirit moves me and dissolves all the "stuff" that had been hanging on my shoulders when I walked in. There aren't words to describe it. Part of my emotion was sadness hearing the music having not been a part of it all week, like I have been for the last 6 years. But most of it was joy as I see and hear my girls get excited about God and sing for Him. It sent Grumpy Gus on his way out the door and I wasn't Grumpy after the program.
We came home and I got the girls bathed and ready for bed. A neighbor called and asked Chris to come over. His wife came to our house and it was so nice to talk with her. Again, I analyze the time and worry I did most of the talking and wasn't a very good host.
As we went to bed I layed on my left side and my heart started doing its flip flops again. Something is definitely not right. All day yesterday it felt shaky like it would go into turbo mode at any moment. Its exhausting because I don't know whether to say anything or not. On of my bestest friends was texting me encouraging me to call and tell Quality Infusion. But on this side I have Chris telling me to hold on and hold out. At the dressing change the nurse went on his drill of telling me of warning signs and when I should call them. He then said, "palpitating heart" and I stopped him and shared that I had, what we call, a heart episode the day before after the first treatment. He down played it until I mentioned it was 175. His eyes got big and he said that it was definitely a taciocardio something....and quickly said if happened again to call them. He then went on with his usual drill. I didn't mention that it lasted 40 minutes and that I can't lay on my left side with my heart doing flip flops.
So, here we are this morning and I know I need to call them but I'm scared to. I don't want to end up in the ER. I want to stay home this weekend. I don't want the PICC line pulled or the medicine pulled. But I know the discomfort in my chest shouldn't be ignored. So, I am going to eat, call Chris (he's at gymnastics with Becka) and probably call Quality Infusion.
I am just so tired. I'm tired of people questioning and not understanding what we are going through. I have done nothing but "hold on" and "hang in there" for the last six months, realistically, the last 10-15 years. I just hit a limit where I'm tired of being stuck, not being able to do 80% of the things used to be able to do, and getting completely exhausted doing simple things like laundry or running an errand. The human side of me has nothing left. Nothing left to talk myself through looking at the positive things and fighting through the negative stuff. This is when and where the human side really emerges...and I hate it.
I heard a song on a cd my Dad made for me and it puts into words what I was feeling. The chorus is what I am experiencing.
The Rock of My Heart by Sumphonia
My Lord, I need nothing beside You
Without You I could not have stood
Your promise is my hope and my refuge
Your nearness my strength and my good
(chorus)
My heart may be broken with me,
My earthly strenghth may depart
But You are my portion forever
You are the rock of my heart
You are the rock of my heart
When I was distressed and embittered
By things I could not understand
Your presence was continually with me
You always took hold of my hand.
(chorus)
My heart may be broken with me,
My earthly strenghth may depart
But You are my portion forever
You are the rock of my heart
You are the rock of my heart
I know that your counsel will guide me
In wisdom, devotion, and love.
And afterward, you'll call me to glory
To dwell in your presence above.
(chorus)
My heart may be broken with me,
My earthly strenghth may depart
But You are my portion forever
You are the rock of my heart
You are the rock of my heart
This song was followed by the kids VBS program where they sang praises to God. Oh, even in the times I feel I have nothing left and I can't do this anymore he waters my soul with a song on a cd and by kids who so easily accept His truths and sing about them.
As Becka reminds me with scripture she learned from Bible Drill (I love that program):
"When I am afraid, I will trust in You" Psalm 56:3
He is my strength, my portion, and my life rests in His hands. It is His to do with it what He wants so that He is glorified and His plan prevails.
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