I was cleaning up my about me page when I realized that I had nothing written for 2016! Since I only blogged a handful of times during 2016, I made the yearly recap a little bit longer than normal, so I could include a few highlights that I normally would have posted!
On the first day of 2016, I was diagnosed with EDS III, which is a genetic condition that I have suffered from my entire life. The diagnosis explained a lot of my medical issues. You can read about that here.
After I was diagnosed, I didn’t blog much. In fact, I blogged a few times that month and then called it quits. I stopped reading, so I didn’t have books to review. I mostly watched Netflix while I suffered. I used knee braces and a wheelchair in order to leave the house and have any type of social life with my husband. Skinny jeans, while cute, don’t accommodate the massive knee braces that I need, I appreciated the 3 weeks that I could wear linen blend pants.
This was one of the few weeks that I got to go out during the spring, without my wheelchair, but you can see the braces under my pants. However, that’s my all time favorite necklace!
A huge shout out to the band Judah and the Lion. Not only are they one of my favorite bands, but when I mentioned on Instagram that I had anticipated going to their show for my 28th birthday, but the venue wasn’t accommodating for my wheelchair.
When I emailed, the venue said that I could put my wheelchair in “the hallway” and never followed up with me, even though 6 months before that, when I emailed with the same venue about their “gold seats” for another act–they don’t always have seating–they sent a follow up email within 10 minutes of explaining the seats to me to ask if I had purchased them yet! Obviously, this venue was only interested in my business if I was paying more. The band gave me VIP tickets and their helpers/people who perform with them on the road (I don’t know the technical term) put my wheelchair in the best place in the room. I skipped the braces and hobbled up for our group shot that I’m including below because they are STAND UP dudes, who make amazing music. I figured that it was my one chance for a photo with Judah and the Lion, so I wasn’t going to be sitting!
And, per my doctor’s orders, my husband and I went all over Charlotte to find new coffee shops and things that I could do in my limited capacity. We even took the dogs one day! She enjoyed it for… 5 minutes.
I continued to not blog during the summer because I was EXHAUSTED. PT twice a week, plus more doctors appointments! I was so tired that I was a hazard driving, so my poor mom had to drive an hour from her house to take me my appointments. It paid off because I got to dress up fancy and attend my brother-in-law’s wedding in Mississippi. I did enjoyed slow dancing, remembering some group dances (wow, those are exhausting), remembering the words to every classic song ever, and made sure that my husband fulfilled his best man duties by decorating the car. I felt so sick the next day because my husband stepped on one of my bare feet and I kicked myself in the ankle on the other foot. I was glad that I had a wheelchair!
The fall past quickly with more doctor visits, homecoming, and our regular fall rituals. A new one, though, was getting anniversary photos taken. While I loved our wedding photographers, I wasn’t very happy with how I looked on our wedding day, so we hired a local friend to do a take 2!
We ended the year by flying into New Orleans, where we stayed for a few nights, seeing the WWII Museum, getting beignets, visiting an old friend, and using Uber more than a normal person should–I really should have started a walking program to build up more endurance. Two days before Christmas, my in-laws, who live nearby picked us up and took us back to their home for the rest of the holidays.
Christmas Eve Service
Overall, 2016 was a tough year. I dealt with getting treatment with something that should have been being treated for 27 years. I had to make the decision to walk away from our church, where it was the one place that I kept trying to make friends because I realized that it was hurting me, but no one there really cared or understood. No, the way that it’s hard for me to get dressed and out of the door is not the same as the way it is hard for you to get ready to go places with your 2 year old daughter. Not even the same ballpark.
2016 was a year of finding new music that I love, new authors to enjoy, new TV shows to laugh at, and still being amazed at lucky I feel to have my dogs in my life. Like, how did I literally get the two best dogs on the planet at once? 2016 meant letting go of people, letting go of possessions (donating clothes as fast as my bum arm will let me!), and saying no to things that I don’t need in my life. Not every medical treatment is needed all of the time. There is such a thing as too many appointments, especially when you need a lot of sleep.
We are looking forward to 2017. We are hoping to move in 2018 (I’m sick, so we can’t rush these things!) and find not just better community, but any community, better medical care, and be closer to family and friends who are in similar situations to what I am in. I believe that living in an area that has a community of doctors that treat both of my conditions will lead to a better quality of life because not only will I find treatment, but I will find fellow patients. I am alone here.
I am looking forward to feeling a decluttered house. Unlike most people, I can’t just declutter. It takes a lot of time and even more help. Its one step forward and two steps back when I knock everything off of the counter because I tripped over my own feet. But, it will look good and feel even better. I am saying “no” to samples when I order beauty products online if I know that I won’t use them. REALLY.
My shoulder is getting worse, so I can’t play my flute, but I am going to try to find the energy to pick my oboe back up. I am always looking for a way to add structure, but not beat myself up when I accidentally sleep until 5 PM. Hell, I’m going to try to shower regularly. Life is an uphill battle, but I have a really good team on my side.
He’s the most handsome member of the team.
This is just what I’ve been doing. If you follow me on Instagram, you probably saw most of what went on last year–the fun stuff–not the heartbreak. But, I hope to come back with book reviews and maybe an insightful comment or two!
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