Ok ladies, how many of you remember being pregnant and the week before you are due, you start having contractions.  They get stronger and stronger but it’s not your official due date yet so you keep putting it off, worried about going in to the hospital early just for them to say you’re not really in labor and send you back home.  Well the last few nights I have felt this way in regard to my heart. Nice, huh?!

Monday morning I woke up feeling absolutely awful.  I was able to get the kids up and ready for school but I felt extremely weak….that weakness you feel after being in bed a few days with the flu, but I haven’t been sick. My whole upper body felt extremely heavy, it took every effort in my bones to just get out of bed, my heart was racing fast and I was beyond exhausted.  Tim instantly knew I wasn’t feeling well by the way I spontaneously shot off smart comments about how he never helps out with the kids and blah blah blah.  I should have at least said good morning to him first 🙂

Tim was able to do chores and come home in time to get Leah from preschool, this prevented me from having to bundle Asher up and load him in the car just to go get her.  My heart began to race even faster throughout the morning, to the point I could not walk from our living room to the kitchen, maybe 15 feet, without having to sit down. I couldn’t go up or down the stairs without feeling like my heart might pop out of my chest and the weakness was just too much so I had to sit on the stairs halfway up. I will admit, I even crawled up the last couple of stairs on occasion to get to our bedroom.  I was absolutely miserable so I pretty much had just stayed in bed.  I simply could not function.

When I got out of bed Monday evening to try and make dinner, the fast heart rate was still occurring along with the extreme weakness but now the lightheadedness and dizziness had settled in. Tim then decided to check my pulse and it was running anywhere from 108 to about 160 just from when I walked across the room.  I should say 108 was resting when I was laying in bed and my heart rate, mind you, is very weird, so we don’t think we even managed to count all of the beats. I should also point out that Tim got out the camera to take pictures as he had never seen so many veins be as dominant as they were in my upper arms. I’m still not sure how I feel about that! Ha! I have had collateral veins in my chest in the past when my SVC stents were closed, yet my arms have never been this bad.

I felt absolutely horrible, yet once again, if I laid down my head and chest instantly began throbbing and I was getting the heart palpitations but if I stayed up I continued to feel weak, dizzy and my heart was racing like something I have never experienced.

Tim and I talked about me going to the walk in clinic but I decided against it.  If I went in and told them I was having shortness of breath, an extremely fast heart rate with heart palpitations and extreme fatigue they would have me on the ambulance to Iowa City in no time. Most likely that would then result in them just telling me to follow up with my heart doctor as scheduled. So I am trying to hold off until I go in for my heart procedure and frankly, the situation really stinks.

I am waiting another week to go see the doctor because this “is to be expected” with my disease. While these symptoms could easily be an indicator of something crazy like a heart attack, to me, they simply indicate that most likely my stents are closed. I have to admit, this episode has scared me because it is the worst I have ever felt.

It has been an absolutely miserable few days but I was able to manage to make it to our small group and that did provide some comfort to me.  We are going through the book of Ephesians and talking about what our roles are.  It really makes me sit back and evaluate if I am living my life worthy of God’s grace.  Battling an illness that doctors know so little about is hard. It is hard sometimes to praise God in these situations. I mean, I am praying my stents are closed just so I will have answers as to why I feel so awful because if they aren’t closed, I’ll be forced to continue to live like this because doctors will have no clue what my crazy body is doing! Yey God, right?!

Not to mention, I had another awful night of coughing and found myself on the bathroom floor praying, PLEADING with God, to make this all stop, make it all go away! I am sick of it!! I am back to doubting myself, doubting my symptoms and even worse doubting my self worth. I have doubted myself as a good wife because again, with all of these appointments I’ve had, come the bills and yet Tim is the one going to work then rushing home to help with the kids, while I’m in bed.  I am doubting my skills as a mother because all my kids want to do is play and hang out with me yet I have been hiding in my room simply because I hate being weak in front of my family. 

And then I think…is this the way to live like I am worthy of God’s grace? Why am I trying to hide my weaknesses and being swallowed by self pity? I mean, it’s not me that is overcoming my illness, it’s only because of God that I am still holding on! I can’t get through this alone…not a chance without Him.

Don’t get me wrong, I do have a lot of great days, better days than bad, but living with a life threatening rare disease also comes with horrific days filled with doubt, fear, pain and defeat. Not to mention even the closest people to me, including Tim, who sees it on a daily basis, I can sense their doubt when talking with them. They too begin to lose sight about the severity of my symptoms and blow it off to my busy lifestyle or having “a touch of something” or I just don’t get enough rest. Hey, I don’t look sick right?!

BUT God is my strength and I shouldn’t hide my weakness or fears, and I sure shouldn’t be focusing on the negativity of this horrible disease, otherwise you can’t see how amazing God’s work truly is and how far He has brought me! So, I’ve had a few awful days but tomorrow is a chance for it to be better. These bad days have led me to sit back and reevaluate my role as a Christian as well as what areas I need to focus on in my relationship with Him. I know He has to be up to something and there is a reason for all of this so as hard as it is sometimes, I still find something to praise Him for every day.