*Originally published 8/4/16*
I have been doing pretty well this summer! The first thing I did this summer was get my Lyme Warrior tattoo! Then, my Lyme friends, Hannah, Abby, and Kerry came here for a few days and it was amazing! We went to Annapolis and hung out with Hannah’s friends and family. We made silly videos and saw Finding Dory because we are children at heart. We went to DC and did a tour, walking all around the monuments. Being with them is the best because I feel loved, safe and understood. Being together feels like home, no matter where we are.
I was able to go to New Jersey and spend a few days with my cousin. I went to Philly and ran the Rocky steps, found an awesome gluten free bakery, and the whole time I wasn’t on any medicines. I came home for less than 24 hours, and then went to the beach for a weekend trip with my friends. I was able to stay up late, wake up early (for me) and act like a normal teenager.
I came home and slept all day, but still, I was able to act normal for those few days. I was still in pain however, but my aunt introduced me to Aromatouch therapy. It is a mixture of essential oils massaged into the back. I noticed that, after the first time, I didn’t have any pain for days afterwards and I also was sleeping better. So now my mom learned how to do it and I am almost pain free some days. At my last doctor’s appointment, 2 weeks ago, I had a list of issues, mostly neurological, but for the first time pain was not on my list. My doctor was very happy with my progress.
Then, last week I was at my lake house all week and things started getting worse. My mouth was covered in mouth sores, so bad I could barely eat or drink anything. The sores started a kind of snowball effect - since I couldn’t wear my mouth guard, my jaw started hurting, which made my neck hurt and swell, which led to my head and back hurting, ultimately ending up with me sobbing in pain and leaving vacation early. I’m hoping this is just a minor herx reaction (all of the Lyme dying off) and not another setback. I did, however, meet with my new advisor at Montgomery College today to get signed up to take 2 classes in the fall. I’m looking forward to having a little bit more “normalcy” in my life since I've realized recently that I know a lot of things and do a lot of things most "normal" people don't.
Such as:
I know my pharmacy number by heart
Having a blanket in the bathroom and a bucket next to your bed in case of vomiting is apparently not the norm
Wearing a bathing suit in the bath in case I have to be carried out doesn't happen to a lot of normal people (awkward)
Having a shower chair at 18 is so cool
Taking more than 15 pills a day is light for me
I can tell you what the different tubes mean when getting your blood drawn even though I'm not a nursing major
I know the difference between a PICC, Hickman and Port
I know what PICC stands for (peripherally inserted central catheter)
I can't count how many times I've had an X-Ray, CT scan or an MRI
Being asked about bowel movements doesn't even phase me anymore (sorry TMI)
Sleeping for less than 10 hours is not an easy task for me
Going out in public in my pjs (while attached to my iv) is quite common for me
I can tell you more about Lyme than most professionals (especially the CDC)
Having arthritic bones that crack every time you move is apparently not common for most young adults
Pretending to be fine is my full time job
Having a breakdown once a week or so is pretty much an expected thing
I can tell when I'm about to pass out (how many other people can put that on their resume?)
Most importantly I know how to have fun and keep a "semi" good attitude while having a chronic illness https://youtu.be/drU13zIkdls
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