It's been a hot minute since I last posted here. With the holiday season finally being here, I have been trying to be present in the moment as well as making some pretty big life decisions lately.
At the beginning of 2022, I said that I was going to gain control over my life again. I was going to commit to fitness, self-care, and my health. I was convinced that 2022 was going to be the year that I start to feel healthy again.... and boy was wrong. Little did I know that 2022 would be the year that tests me mentally and physically. Let's take a look back at 2022's good, bad, and ugly.
A year in review
January: I entered 2022 recovering from having a Covid Christmas. My Crohn's was in microbial remission and I was determined to make 2022 my year. I had moved to Knoxville, Tennessee and was living in my apartment, finishing up some pre-requisite courses I needed for nursing school that started in April. My boyfriend and I hung out all the time because, for the first time since lockdown, we lived 10 minutes away from each other. Then, on January 15th, I began throwing up. I couldn't hold any food or liquids down... I thought maybe I had slipt out of remission and went to the emergency room thinking that a round of fluid and some IV Zofran would fix everything... However, I ended up being admitted for three days. I left the hospital with no answers. This became a biweekly occurrence, where I was having episodes of vomiting with no explanation. January also brought an explanation of the cysts I was finding in my armpits in 2021 with a diagnosis of Hidradenitis Suprativa.
February: These episodes of recurrent vomiting continued to be an issue. I got an appointment with my regular GI in Atlanta to see if he could figure things out. After multiple types of stool samples, new scopes, labs, and scans it was determined that my Crohn's Disease was in full remission. This was great news, however, that left an unsolved puzzle regarding why I kept throwing up and having these episodes that were landing me in the emergency room. We began discussions of being referred out to Vanderbilt or Mayo Clinic to further investigate what was going on, because my GI was stuck. The last weekend of February, I took a much needed trip back to my alma mater to visit friends who were still completing their last semester.
March: At the beginning of March, I flew out to Colorado to visit a friend. Even though I was exhausted and did not have enough energy to do everything I probably would have been able to do before getting sick, it was an amazing trip. It was the first time I took a trip and didn't have to worry about my Crohn's flaring and ruining the trip. It was a trip to celebrate me graduating early, getting into nursing school, and being in Crohn's remission. This trip was also important because the friend I was visiting works in healthcare and also struggles with some chronic conditions. She was one of the first people I openly talked about mentally struggling to be happy about being in remission since I felt my health was declining and we couldn't figure out why I was having vomiting episodes every other week. She listened to everything I had to say and said it is more than fair that I was feeling the way I was. While out there, I also had a telehealth with my GI for an update and the decision was made to pursue seeing Mayo Clinic in Jacksonville, Florida. March was also a big month for Invisible Wave. Not only were we awarded a National Anthem Award for Silver Healthcare Leader of the Year for raising awareness for young invisibles, but we also testified at our first hearing for bill SB8321. On March 8th, I had the honor of testifying in favor of this bill to the state of Maryland's congress to help young adults with invisible illnesses be successful in college. Overall, March was a great month. Looking back at my social media posts, I was confident, sharing about how life can still be great with chronic illness, going to cyclebar and working out, I felt confident in my body. Even though I was still having the vomit episodes, mentally, March was probably the best I was in 2022.
April: On April 4th I was prescribed Humira for HS and Psoriasis in hopes that I could stop coming in so often for steroid injections for my cysts. I was also diagnosed with Dermatographism (or skin writing disease) at this visit. That same night, my family was having a family game night, when all of the sudden my body became heavy, my blood pressure got really low, my face turned pale white, the room began to spin, and I felt like I was going to faint (but never did). I went to the emergency room but left with no answers and a referral to cardiology. On April 6th, I woke up feeling off. On the way home from dinner, I had the same heavy feeling and ended up passing out for about three minutes. I was taken to the emergency room again, where they gave me fluids, ran labs, did an EKG, and ruled out seizures on an MRI. They again told me to follow up with cardiology, but from an emergency department standpoint, there was not much more they could do. On April 13th, I started my actual nursing classes. On April 18th, I was diagnosed with Vasovagal Syncope and suspected POTS and was put on a two-week halter monitor. During all of this, I was still having vomiting episodes as well. On April 25th, I got my loading dose of Humira and began m new routine of biweekly self-injections to treat all my skin conditions.
May: The first weekend of May, I flew to Jacksonville and missed a day of nursing school to have my first/ initial appointment with Mayo Clinic. At this appointment, we confirmed that my Crohn's disease was in remission, ruled out Celiac Disease, diagnosed me with Long-Covid, and concluded that she would need me to come back for a week-long trip of labs and testing at some point to further explore why I was having these vomiting episodes. The following weekend, I went back to South Carolina and attended my college graduation. After my trip to South Carolina, I had a really bad vomiting episode and began to really struggle mentally. I was in nursing school, having random vomiting episodes on random days that were debilitating and took away a whole day of homework and studying, and was fainting at least three times a week. I remember at one point the iwave bloggers and social media team had a call and when I was asked "how are you doing", I just broke down. This call and this breakdown was the point where I realized I was not as good as I was telling everyone I was. I was terrified of fainting, I had fainted in the shower, I couldn't hold food and liquids down 2-3 days every other week, I was constantly in the emergency room, still had perfect attendance (other than the day I took to attend my Mayo appointment), and somehow still had good grades.On May 29th, I made the official decision to take a quarter off of nursing school to figure out what was going on. My physical health seemed to be rapidly declining and I needed to focus on that. Taking a quarter off meant I would have three months to figure out why I was fainting, why I was having vomiting episodes, and hopefully figure out treatments.
June: I finished up my first quarter of nursing school with good grades! On June 21st, I celebrated my 22nd birthday with a couple of friends from nursing school. It was during finals week, so we went to a nice dinner and then had a study session for our last final which was the following morning. On the last day of finals, I took my last final and went straight to the airport to fly back to Jacksonville for testing. From June 23rd-27th, I was at Mayo being getting all sorts of exams, blood work, labs, scans, tests, etc. (vlogs of each day are on my instagram).
July: The weekend after all of my Mayo tests, I road back to Atlanta with my mom so I could get a tilt table test on July 5th. While in Atlanta, I had a follow-up with dermatology, where we learned the Humira was really keeping all my skin disorders in check (thank God). Then the next weekend, I moved to a new apartment in Knoxville because my original apartment's lease that I was subleasing ended. On July 9th, the day after I started moving, my boyfriend and I went to meet a very sweet german shepherd husky who was being trained to be a service dog and knew basic obedience and a few tasks to see if we would be a good match. That day, I gained my new best friend, and life saver, my service dog, Sebastian. (Read all about this in previous blogs.) Throughout July, I continued to search for answers and ultimately decided that for the time being, nursing school was probably off the table as I felt we were making no progress an I would not be ready by the date I was to return to school (which I was correct in assuming.)
August: I was officially diagnosed with both Vasovagal Syncope and POTS in early August and placed on Midodrine. August was pretty much filled with figuring out a dose of Midodrine that worked for me, training with Sebastian, and ER trips for vomiting. Towards the end of August, I saw an Integrative Health Doctor to see if maybe I could get some answers that way.
September: On September 8th, I finally got an answer as to why I was having these vomiting episodes. I was diagnosed with Cyclic Vomiting Syndrome by Mayo Clinic and began trying treatments immediately. This allowed me to start reading on all the things I had been diagnosed with up to this point, train Sebastian, petsit and babysit where I could, and try to figure out how to navigate life.
October: I was diagnosed with chronic Lyme Disease with Bartonella in early October and labs that explored the havoc PCOS has reaped on my hormones by my Integrative doctor. I cried so hard when she diagnosed me with Lyme, because she said based on my labs, i have had it for a few years and that it probably suppressed my immune system, which allowed my autoimmune/chronic conditions to come through. I finally had somewhat of an idea as to why I went from healthy to declining yearly, starting in 2018. She started me on a protocol for Lyme and my hormones which is four months. October was Dysautonomia awareness month, which meant I did a lot of advocacy work for POTS and Dysautonomia, as I was just diagnosed this year and had a lot to share. On October 17th, I was taken off midodrine due to a drug interaction with my cyclic vomiting medication and was placed on a one month halter to rule out permanent damage by the drug interaction.
November: November was hard. I was off midodrine and my CVS meds were not helping. Sebastian was working full-time between my CVS and POTS. My detox for Lyme went well. I went to the Harry Potter exhibition with some friends, which probably was not the best decision. We had been planning it for about a month, and I woke up with a cyclic vomiting episode the morning of. I let it run its course, got an IV, got IV Zofran, and still went to the exhibition even though I was dizzy, throwing u, exhausted, and felt like crap. Other than feeling absolutely horrible, I still had fun and was glad I went. Thanksgiving luckily went well, I thought I was going to have a cyclic vomiting episode that day if my body did its usual every other week thing, however it decided to function properly for the holiday. At the end of the month, I moved home to my parents' to be closer to my medical team, be closer to family, save on money, and start my new career path as a dog trainer.
December: It's a little hard to write this month since it is only the 16th, however, I have a feeling it is going to be interesting. I have already had a Cyclic vomiting syndrome three day event, have no energy, and have noticed my brain fog is getting worse and worse. I love my new job and am beginning to set intentions for 2023, but we shall see what the end of 2022 holds.
2022 was definitely not what I thought it would be, but here's to 2023!