It was one of those weekends that started out with relief of finally getting the tests done that I wanted, followed by frustration and ended in appreciation. After being in Iowa City all day Friday I couldn’t help but start thinking about all of the “what if” results that the tests might bring. It’s actually silly that I let this get to me because I have been in this same position how many times?! The symptoms affecting my daily life, doctors doing test after test with nothing to excuse my symptoms, and then finally, I get that one test back, always that bittersweet answer finally justifying my symptoms…more damage from my disease…all while nothing can be done for me.

This fear and anxiety of “what if” actually overcame me after spending Saturday night with my family at fireworks. We always go to the golf course because we can see great from there and as we began walking up the first hill, here came that all-too-familiar chest pressure but I continued walking. And then another hill yet I continued to push Asher up, slowly falling behind the rest of the gang.

Tim and the kids still wanted to go see if we could get even closer and I finally had to stop at the top of one hill as my chest and head were pounding and I had to catch my breath. Luckily it was almost dark so nobody could see how bad I really was struggling but I let that fear creep in. And then Tim and Skyler said they found the perfect spot so we all went over a couple more hills and finally were able to sit and relax…until they shot off the fireworks. By this time I was getting that cough from overexerting myself and my head and chest continued to feel like they might explode at any minute…meaning the extremely loud noise and bright lights from being so close to the fireworks did not help my situation.

As I sat there watching everybody else enjoying themselves, along with Leah in my lap, I couldn’t help but think how much do I really hold them back? What kind of wife and mother am I to not even be able to enjoy something as fun as fireworks?! Am I making any good memories for my kids? What if this is the best I will ever feel? What if this disease really does kill me sooner than later? What if Tim is regretting the fact that he vowed to spend the rest of his life with me…in sickness and in health?

While I am so happy my family had a great time Saturday night, I was absolutely miserable physically, which resulted in the rest of the weekend with me pretty much resting and wearing the most loose fit clothing as possible because my chest was so tight and constricted from all of that pressure…all because of searching for that perfect spot too see the fireworks. So stupid and not fair! I used to be so active…and I like to think I was tough…just ask my brother ☺️

Tim asked me how I was feeling the next day and if it had “really been that bad” on me. I again got extremely frustrated and thought he really has no clue what this disease does to me. He’s just like everybody else who doesn’t understand how much effort it really takes for me to get through the day sometimes….and he sees me every day!

This led to some tension and arguing because I felt so awful yet he couldn’t possibly understand…and I am definitely not one to show any signs of defeat…but this weekend I couldn’t help it. Tim couldn’t grasp why it had been so bad and simply offered to drive me next time because in all reality, there was no reason we had to take the course that we did…the spot was actually right by the clubhouse so we could have indeed driven there. And, I couldn’t give him an answer as to why I struggled so much this time…just a bad day I guess.

Anyway, I saw the frustration in my husband’s eyes as well…and I hate that more than going through this myself. So again I found myself thinking how boring I must be as a wife and how annoying it must be to live with me…and all of my health issues.

But then on my way to work 101.9 was on and the first thing I heard mentioned was the four military men that were killed in Tennessee and how all of the restaurants had started to set up a table in memory of them. How these wives and their kids and their families never got a chance to say goodbye to them. These women would give anything to be arguing with their husbands, to at least have them here by their side, and here I was taking life and the man God blessed me with…taking it all for granted…not appreciating how truly blessed I am.

Instantly, I started crying and I asked God to forgive me for letting such negative thoughts creep back in. I realized again that I was being selfish and I was starting to focus on all of the stuff that I couldn’t do…everything that is wrong. I was relying on myself and I was not trusting God in this situation.

Later on in the day, I was faced with the choice of letting fear overtake me again as I was able to read all of my lab work and ct scan results in my-chart. I stopped and prayed and decided I would not jump to any conclusions until I can discuss it with my doctor. I am not going to waste anymore time worried about something God already has played out for me. I do think the results might be able to provide some answers as to why I don’t feel well but again, I will just have to wait and talk with the doctor.

So, after a long weekend of taking pity on myself the only thing left to do…I signed up for a 5k! Haha! While I felt absolutely miserable for a couple of days, it did not kill me and I am feeling better today. I am ready to push myself even harder!! Well ok, I’ll be walking while I’m pushing Asher in his stroller but still! I am not going to give up or let this disease get the best of me. 

Again, I don’t write this for attention and I definitely do not want pity but hopefully you can see how this disease can so easily overtake and consume my life when I don’t let God in to be my strength and my hope! I made the weekend what it is and the only reason it was a bad weekend is because I did not trust God. I lost focus of the big picture and what He really is doing with me. 

And, thankfully the bad days don’t last and God puts what and who I need in front of me at the exact times when I need to be reaching out to Him the most. I can regain focus and trust knowing that God has His hand in all of this. Look how far He’s brought me…my story isn’t over yet;   Get it?? The semicolon? ☺️