Attending the 2016 Osteogenesis Imperfecta National Conference, was a dream come true. I’ve been wanting to go to one for far too long. I have the most amazing friends, but I thought it might be a little healthier for me to meet people my own age who have OI so I would be able to connect with people who know what it’s like on a daily basis. Days before the conference, I was nervous and anxious because I’m very quiet and shy at first but when you get to know me, I become very outgoing and talkative.
When my grandparents and I were checking into the hotel (7/21/16), where the conference was being held, I saw several people who had OI just hanging out in the lobby. At that moment, it was surreal because I’ve never been in the same room with more than ten people who have OI. It truly amazed me how so many of us look alike, but yet, we are all different. I loved being around all people who go through similar things that I do because I consider everyone who has OI my extended family.
The first day the conference started was 7/22/16. For me the day consisted of medical consultations. Those who attended the conference had the opportunity to see three different medical professionals one-on-one. I saw an adult health doctor, a dentist, and physical therapist. Prior to the conference, I wrote down a series of questions that I wanted to ask each of the professionals. I should also note that every medical professional has either worked with (on a daily basis) or experienced a patient/client who has OI. Each session with each professional lasted 30 minutes and it was over in no time. After my appointments were over, my grandparents and I spent the rest of the day sightseeing around Orlando and went to the Kennedy Space Center.
The next day of the conference we started out by having breakfast which was provided by the Osteogenesis Imperfecta Foundation (OIF) with everyone who was registered for the conference. I was behind my grandma in the line to get food and when she got out of line to go find a table, she came back to me, nudged me and says, “Look who’s over there sitting down.” I said, “Who are you talking about?” Then she responded by saying Gemma. For those of you who don’t know, Gemma Geisman is an author who wrote about her son who had OI. She was the guiding force in the development of OIF. She worked with parents and doctors all throughout the country to get the organization started. Several years ago, my grandma recommended her book for me to read, and soon after I finished reading it, Gemma and I became friends on Facebook. With Gemma being my grandmother’s friend on Facebook, she has learned my whole life story. I’ve wanted to meet her in person for as long as I can remember. I wasn’t expecting to see her at breakfast, so it was my chance to finally meet her. My grandma and I introduced ourselves and then she did the same. Breakfast was almost over so, we agreed to meet the following morning for breakfast. Once breakfast was over, we went to the talk about the latest research and information about OIF.
For some time, my grandma kept bugging me about going to the young adult session for ages 16-30. I kept thinking and I thought it would be good for me because it’s not often when you get a chance to be surrounded by people your own age who goes through what I go through. I ended up going and I’m happy I did. I learned how much we all were alike and that I always have a second family and people I can always go to. While I was in the young adult session, my grandparents ended up going to the dental session. After the young adult forum, I was done for the evening.
The morning of the last day came way too fast. After I woke up, I was so excited and couldn’t wait until I got downstairs to go and meet Gemma. Once we got downstairs, I walked over to Gemma, who was already there saving our seats. I sat down next to her. I started by asking about her own life, because I wanted to know her more. The first thing that came to mind was that she is so positive, no matter what’s going on. I love that she’s so open and honest and can change my mood faster than anyone I’ve met. She asked me how I am health wise. I told her that I was pretty good but that chronic pain is my biggest downfall. One thing that will stick for me the rest of my life is that she told me that she’s very impressed with my blog. I’ve been writing since I was in sixth grade, but because my blog is in the public eye, it means much more because writing is one of my favorite things to do. I hope that some time in the future, I can be an advocate for OI as Gemma is and has been. Before I knew it, it was time to say goodbye since breakfast was ending. I gave her the biggest hug and she said, “It was nice talking to you. I love you and I continue to keep checking on your blog and Facebook.” My grandma and I both said we love her as well. By the way, if you haven’t read “From the Seeds of Sadness” by Gemma, I highly recommend it! It won’t take you long to read because you can’t put it down!!!!!
After breakfast, my grandparents and I ended up doing some shopping to kill a little time before attending the Mental Health and OI for Adults-Managing Chronic Pain session. Since the day I was born, I’ve had on and off chronic pain so this session was a must. After the session was over, I ended up getting a TENS machine that was being sold at the conference. For those who don’t know what a TENS machine is for, it has two stickers that you place around where you’re having pain and it stimulates that area and makes you pain free for a few hours. I’ve experienced them since I first started physical therapy. I’ve been looking into it a lot recently and I am so glad I got it, because it makes me pain free and I don’t have to be on as much pain medicine.
It was sad that the conference went by so fast. I ended up staying at the hotel where the conference was held one extra night, and it was weird not seeing the lobby or any of the hallways filled with people who have OI. Since this conference was my first, I enjoyed every minute of it. I went home with more friends who have OI, I’ve reconnected with old friends, and I learned a lot more of information about OI and am already considering of going to the next conference in two years!!!
In my next post, I’ll be writing about my vacation after leaving the conference!