3 years later….

3 years ago around this time I was leaving the hospital after a 6 1/2 day stay. I was so excited to get out, get some fresh air, feel normal, and get on my way to better health. I had no idea what the next 3 years would hold. (If you’re new here no worries you can go back and read some of my old posts, but this is mostly talking about my hospital stay with facial cellulitis that kind of started all of this) I can still distinctly remember my hospital stay, but the day I remember in particular was Thursday night & Friday. I was in awful pain all night Thursday – the swelling on my face was spreading, I started throwing up and I got this weird red rash on my face. I remember my night nurse was so kind and calm. My blood pressure was all over the place and nothing was being controlled. We kept saying something is not right. That was the first time during the hospital stay or anything prior that I started to feel a little bit scared because nothing was really working at that point. Friday morning my doctor wanted a ct scan to make sure everything was ok; everything turned out fine. So the next step was a nasal swap to test for the flu and other things like that. Of course that all came back negative, which we were all confused and frustrated. What was causing this sudden body pain and all these issues arising so quickly? The talk of going home stopped. I was so out of it Saturday-Tuesday. I remember things, but not clearly. My body was done with all the crap and trauma it has endured over the years (ex. surgeries, dad’s death, infections) it was done. It was like my system was literally a light switch and everything just turned on. I remember the new doctor that came in on Tuesday morning with the interns. She looked at me after looking over my charts and said this seems like a classic case of lupus. She was pointing everything out to the interns and showing them this “butterfly” rash. I was so confused as I had no idea what any of that meant. She then said we are going to send you home today but you need to follow up with your family doctor and get an auto-immune work -up. I asked do I have lupus? She said something along the lines of we need to wait for bloodwork but this seems like a classic case, you get an infection which triggers auto-immune things and your presenting with lupus symptoms. I remember still being kind of confused not thinking this would be long term, and I had no thoughts that this could get worse!

I wish I could kind of shake the younger me and realize that I should’ve never taken my “good” health for granted. I should’ve been way more thankful for every step my feet let me take independently. I am so much more aware of small things now. Sometimes I get asked how do you not get mad? The truth is there are times I get mad and I get mad for going snorkeling for “starting” this whole thing. I got mad that my doctors said I could never snorkel again because this would likely happen again if I did and fighting the infection would be much worse the 2nd time. But then I began to look back and I have studied my old doctor records. This stuff actually started back when I was in 7th/8th grade. My doctors called those little “episodes” but it had not triggered yet. I golfed in high school and was pretty active. My body would always ache after that but as a teenager I of course just kept telling myself I wasn’t active enough. I was tested for mono numerous times during my high school years. The heat has always bothered me and it got progressively worse as I got older. Then in 2016 I started getting random rashes, awful migraines, missing work and events because I felt like I had the flu, was running low grade fevers, and my energy was dwindling. So no, I am not mad for going snorkeling because my doctors have helped me understand this likely was going to happen one way or the other. Instead, I try to look at it like I was thankful I was able to enjoy snorkeling in Florida. It was something I have always waned to do and I got to! You can’t live life waiting for things. You have to live and be present! Go on that trip! Our health can change drastically so fast, in fact our next day is never promised. As hard as it may be to think or act, you truly have to act like each day could be your last. Treat people with kindness and do the things you want to do! Travel while your body allows you, go on hikes, etc. I’m not saying go book every single trip in the whole world and quit your job. I am just saying LIVE IN THE MOMENT and ENJOY IT! Be thankful for what your body lets you do; “it never occurred to me that one day I would wake up sick and never get better” (unknown image from Pinterest)

Usually when this “anniversary” comes up I get a little depressed and feel bad and sad as those hospital memories come back, and I reflect on the person I was before. The one who could run and jump and not worry about my energy levels or taking medications. But this year I am choosing joy. I am thankful for the years I had that I didn’t need a walker or a wheelchair. That I could run around with my friends and not really have any physical limitations. I was pretty healthy for 16 years of my life. At 17 is when things kind of started really changing so this could have all happened a lot sooner, so for that I am thankful I got to enjoy it. Today I am choosing joy instead of being upset that I still don’t have a complete diagnosis. Who knows maybe one day I will get better, but for now I don’t focus on that so I don’t keep getting disappointed. I am choosing joy today. What are you choosing today?

“For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future.” – Jeremiah 29:11

Pictures below are before/during/after