I often get asked questions like how do you stay so strong or so positive through this? How do you get up and get going every morning? My answer is complicated although I will try to explain as best as I can in this blog. I’m going to go back in time a bit through the events that have changed my perspective on life. During my childhood I wasn’t sick, just the occasional viruses and surgeries for my cleft lip and palate. My Mom and Dad never really complained a lot and they loved God and it showed. I just kind of adapted that I guess, to not really complain and be thankful for things. In high school during my junior year I got an ovarian cyst. I was really confused why this was happening and I got upset. I started getting better after being put on the “pill” – that was the only treatment to try for this so far. Surgery is last resort. It started healing and shrinking so we thought we were on track. Then it started hurting again and my summer wasn’t going well. I was on pain meds around the clock. Somehow I was able to enjoy a pretty much pain free vacation for a week at my Aunt and Uncles’ Lake House. I focused on the joy then. I had relief for a bit. Then we came back home and it started getting worse and I was back on pain meds. Fast forward to the start of my senior year. I made it to the first three days of school and was able to attend one football game. Then I had a golf match, I was really struggling that day with pain but I loved golfing so just kept going. I was playing horribly about halfway through. I took a backswing and I remember I just started crying because I was in horrible pain. I had to withdraw from the match which was incredibly hard as I felt like I was letting my team down and myself. I tried to go to school the next day but I was about 5 minutes from school and just started crying and said Dad I can’t go to school today. Little did I know I wouldn’t be going to school for a long time. Turns out my cyst was growing and twisting which means I needed surgery. You usually bounce back from surgery pretty quickly but I didn’t. I tried going back to school after surgery and couldn’t do it. We met with the guidance counselor and it was decided that withdrawing would be best for the Tri. I had enough credits so that it was fine. We were than able to build in a study hall for one Tri and the last Tri I only had 4 classes instead of 5 because school was hard and my energy was low. I could go to football games and golf matches if I wanted but I didn’t if I felt miserable. I went to the golf senior night and that wiped me out. Anyways during that time I got mad at God and couldn’t understand why this was happening to me. This was supposed to be a fun time in my life, it was my senior year and I was missing out on a lot. But then I started doing devotions and praying and was feeling better mentally. I was finally able to go back to school and go to basketball games and do all that fun stuff. I still get emotional sometimes about missing golf but I look back and focus now on the good of that. My relationship with God changed for the better and I learned to appreciate when I felt good enough to do things. (This was in 2012-2013).
Then in 2013 my Dad passed away unexpectedly and I found him. I never really got mad at God. I was looking at it more like a glass half full. I got 18 amazing years with him. We later learned that most people die in the early 40s with the disease (ARVC) so I was like wow we got about 15 years more than the “average”. I was thankful for a great relationship with him and honestly don’t really have bad memories. I choose to live life like him from that moment on. He treated everyone with kindness and truly didn’t know a stranger. He was feeling miserable in the last few years of his life especially towards the end which we didn’t know why until we got the Autopsy. He had gallstones and some other stuff as well. He didn’t complain, he loved life and definitely lived it to the fullest. Looking back and seeing how he faced hard times in life and choose to focus on the good ones is where I think I learned how do deal with what I am facing now.
In 2014 I had small glimpse into my future. I had many months of testing and an upper endo and a colonoscopy. I was throwing up constantly and didn’t feel good. it felt like my stomach was burning. We found out that I had H Pylori and it took 2 big rounds of many antibiotics to get rid of it. I had also developed gastritis and had a few polyps removed. It was a long time of no answers, then finding out I had another ovarian cyst which went away on its own thankfully. That time of life was hard. I had to quit a job I liked because my immune system couldn’t handle it and I didn’t have the strength to work at a daycare anymore. I was heartbroken my body let me down again.
In 2016 was the spring break trip that started this all. After all the stuff in 2014 I never bounced back from that really and was getting sick off and on and weird symptoms. Then during spring break I got facial cellulitis and my body was like GAME OVER ABBY. Several of my doctors told me it’s like your body has finally had enough and sort of shut down and woke up with all these things and conditions in your body. I haven’t gotten better, in fact in some parts I have gotten worse and developed new conditions and new symptoms. Early on I stumbled across this quote by Josh Shipp “You either get bitter or you get better. You either take what has been dealt to you and allow it to make you a better person, or you allow it to tear you down. The choice does not belong to fate, it belongs to you.” That hit me. I then was diagnosed with some chronic illnesses; Fibromyalgia and POTS. I am stuck with these the rest of my life they aren’t going anywhere unless a cure is magically found. So I could choose to live my life the best that I can or dwell in how miserable I am and be mad at everyone. There are many times in the day I remind myself enjoy this moment or push yourself and do this because who knows in 10 years what my health will be, as it changes fast and sometimes without warning. I still have bad days and don’t get the wrong idea – I don’t choose this life and wish more than anything I can have my old “life” back and be able to walk and live in no pain. I have been dealing with my low grade fever now for almost 5 months now. My doctor said it’s like my baseline is 100.0. On days I am “active” it usually gets to 102, but this week it has reached 104 several times. Tylonel lowers it normally to at least 100 or 101. This isn’t contagious or any type of bacterial thing. My doctors discussed early on this could happen. This isn’t uncommon in some of the auto immune diseases that are on the table for me, sadly I still have no diagnosis. I could choose to stay in bed every day and rest ( in fact my body would probably prefer that haha) but I want to enjoy this life as best as I can. Instead of all the negatives life has thrown me like right now this temperature – I don’t focus on that – I focus instead on the fact that I was able to get up and go to work today and enjoy my job, or the fact that I have a huge support system. I recently developed a new hobby and have started blogging more about fashion and using instagram more and have made a lot of friends on there. I still have bad days where I do just want to stay in bed and wish I could have a normal life. I cry and get angry I’m not perfect. I just try to use what little energy I have on something that I like to do and have fun with instead of using energy on getting upset. Now to get back to the question how do I face everyday? I’m still not sure. God definitely helps me every single day and every single minute. I focus on my friends and family and the kids I interact with that helps me get going for work. So I am pretty sure I get this strength from God. (please take a listen to one of my favorite songs linked below)
“I look up to the mountains; does my strength come from the mountains? No, my strength comes from God, who made Heaven, and Earth, and mountains.” -Psalm 118:1-2 NLT
*These pictures are from our trip out East 2015 summer in Maine at Acadia National Park