I can’t believe that 2016 is over. This year has had a lot of ups and downs in regards to my health, schooling, and personal life. It has been one of those years that I try to grow from and instead of thinking about how bad it has been I like to think of the good things and learn from the bad. When the year started out back in January I was thinking this year was gonna be really great health wise. I finally found a GI doctor that I like and after being off a steady treatment for my Crohn’s for about 2 years, my new GI listened to me and I started Humira. After the first few rounds of Humira injections, I really felt a difference in my health. My GI symptoms were getting better and overall I was feeling well.
Then comes February.
February 8th is when I dislocated my left hip and I would begin one of the hardest health journeys I have had in a long time. When I dislocated my hip I didn’t realize what that meant because I was only 3 years post hip-replacements and I shouldn’t be having issues. After about a month of being in a leg brace and on crutches, I met with a new orthopedic surgeon, as my original hip surgeon moved unexpectedly (which was another big ordeal) and I found out that my hip prosthetics had failed only after 3 years and at 24 years old I was needing more hip replacements. I have blogged about this before so won’t go into too many details but this is how 2016 started. I was devastated. I cried for a couple of days, I had to meet with all of my teachers at school and drop some classes so I could have surgery in March. It was stressful. Not only because I had to drop everything for surgery, but I knew that I would have to have another surgery later in the year so the anxiety was pretty horrible.
March & April: Surgery, Recovery and Research.
On March 8th, exactly a month after dislocating my hip I had my 3rd hip replacement surgery and after a few days in the hospital and 5 weeks of physical therapy I returned to school, which was about the end of April. I had some minor Crohn’s flares during all of this because I had to adjust my Humira schedule but nothing major thankfully. Back in January before hip dislocation, I had submitted a research abstract to a big research conference in Boston and I found out that they had accepted my abstract as a poster presentation. I was stoked! In the midst of all the health issues, this was a much-needed win. I went back to school in April to focus on research and get everything I needed to be done for the conference that was in June. Also, in April I had the opportunity to attend a patient advocacy conference in Chicago where I got to meet a lot of the online advocates I had connected with over the years. It was really awesome and something that helped me cope in between hip replacement surgeries.
May & June: Summer School and ASM Microbe Conference
In May I started summer school to try to catch up on what I had missed in the spring semester and continued some research stuff in preparation for the conference. In between the end of May school term and beginning of June, I had the opportunity to attend Digestive Disease Week in San Diego with some other patient advocates. This trip again was another highlight in between hip surgeries. I had never been to California and San Diego was gorgeous. I was able to hear the latest research going into IBD and meet some of the scientists and physicians. Just a great experience overall that once again helped me in the midst of my health issues. In June, I was still in summer school, but June 16-20 I attended the research conference in Boston. It was amazing. This was my first big conference to attend and present at as a graduate student! There were over 10,000 people there, Bill Gates was the opening keynote speaker and it was just awesome. My research mentor who went with me did her undergraduate degree in Boston so she took me all over the town. It was a lot of fun as I got to see all the histories that are in Boston, eat amazing food and even go to a Red Sox game. It was also more than just a trip to Boston. I had a lot going on health wise as I have said and this trip helped me feel normal and cope with what was going on with me. I was less than a month away from having my 4th hip replacement and had a lot of emotions running through my mind and this trip helped tremendously. It was more than just me presenting research at a big conference for the first time (which by the way I seriously will never forget) but it helped me cope and I can’t thank my mentor enough for helping me go and going with me.
July-December: More Surgery, Conferences & School.
On July 11th I had my 4th hip replacement. I did 10 weeks of physical therapy for this surgery which was rough but necessary. By the end of August, I had started back school and had to get back into a set schedule. Being out for surgery for so long was tough because now I had to get back to school and get into a normal routine of studying and doing my work as a graduate teaching assistant. The semester was hard. I found out I had Osteoporosis (yay), I found out I might have another rare disease that half the doctors I have seen have never heard of and I had issues with my Crohn’s again because I had to stop my Humira for a bit for surgery. This took a lot out of me mentally and emotionally. I had to drop some research stuff at school to focus on my health and grades which I hated doing. I hate giving up on something because of my health but sometimes it is necessary so that I can get better. I focused on my health, my school work, my TA’ing labs and trying to just get through the semester.
The end of December I had the opportunity to attend two IBD advocacy events. One was in Chicago where I spoke about my journey with Crohn’s from diagnosis to where I am at today which was amazing. One of the highlights of the year. Then I went to Orlando to attend the Advances in IBD Conference with 16 other IBD health advocates. It was pretty amazing as well as I was able to learn more about new IBD research and science and hang out with pretty amazing advocates and do some advocacy work. I also won an award for Best In Show Facebook in the WeGo health Health activist awards in December which I was pretty stoked about! 2016 has been hard but it has had some GREAT moments and memories that I will never forget.
In the first few weeks of 2017, I have a few doctors appointments, one where they are trying to decide if I have a rare metabolic disease and then another for my Osteoporosis. My hope is that 2017 my health continues to get better and I do not face any more surgeries. In May I will have my Masters Degree in Biology Research and will have a little time off. I’m the worst at setting and keeping New Year’s goals, but I want to focus on my health, eat healthier and be more active for my bone health and to work on my science communication skills. I also am trying to get some IBD advocacy work up and running in my local community as the IBD patients here really need support. I am looking forward to the new year and continuing my IBD advocacy work and honing my science communication skills. Here’s to a healthy, happy new year!