2015 in Review

Hard to believe I'm working on yet another end of the year blog post, for a number of different reasons. This year has been by far one of the busiest, most difficult, and most exciting years yet. It will be interesting to see what 2016 has to bring our family. Living with Mito is a constant struggle, and we have gone through a ton of challenges in the past year.

In January I took the long trip to Atlanta, Georgia to have my first visit with Dr. Fran Kendall, a biochemical geneticist specializing in rare and difficult to manage metabolic disorders like Mito. It was during that visit I received a clinical diagnosis of Peripheral Autonomic Neuropathy. Unfortunately, this has still not led to an official diagnosis, but I am confident that at some point we will get there. This diagnosis is just the beginning piece to one huge puzzle. January 14 marked one year from my hospitalization for seizures and being in the ICU. I was thrilled to be able to make it to yet another big milestone like that. My hospitalization was a particularly scary time for me and many of my family members and friends. I rang in the New Year with my fiance, who is now my husband. However, I also suffered a major crash that month due to being off of my Mito cocktail. By the end of the month, I was forced to take Family Medical Leave from my full time nursing job. It was a very difficult step, and I was hoping at some point I would be stable enough to return. More on that later.

February was, thankfully, somewhat uneventful. On the 19th I celebrated my 24th birthday. Beyond that, nothing major happened. Justin and I were looking forward to our wedding and realized it was only a couple of short months away.

March was an extremely difficult month, however. In addition to being on FMLA, I also was experiencing severe abdominal pain without a clear cause. No amount of pain medication helped for a long period of time. The on call doctor in our local Emergency Room did everything she could to put the pieces of the puzzle together. Eventually she figured out that there was some sort of obstruction in my appendix of unknown significance, and I also had an ovarian cyst. Looking back on previous scans, she noticed that the obstruction had been there for nearly a year and no one had looked into the cause of it. At that point, a diagnosis of chronic appendicitis was made and I was sent to another hospital 30 minutes away for an appendectomy. Surgery took place on the morning of March 1. Later that month, Justin was informed that he was being let go from his full time position as a youth director at a local church. There were several reasons this was extremely difficult to deal with. First of all, I already had history with that church and had left it for several reasons. In addition, I did not feel that they were treating Justin appropriately. At that point, Justin was forced to move in with me just a month before our wedding, because there was simply no way we could afford to pay on two places to live and survive, with both of us being out of a job. In retrospect, I'm kind of thankful Justin moved in when he did, because we were able to get our house together and also had some time to really enjoy each other before our wedding day.

April was one of the best months we had! Lots of family birthdays, Easter, and of course, the main event, our wedding. It took place on April 25. This was by far one of the best days I had in a long time, several years in fact. Our closest family members and friends were there to see us commit ourselves to each other. We had a beautiful ceremony and everyone had a blast at our Wedding Reception and Dance. It was during that month I made the difficult decision to change Primary Care Physicians. It took several months for me to feel comfortable with that switch but it has ultimately been the best decision I have made in a long time.

May was another exciting month. During the beginning of the month, Justin and I were able to take a mini vacation on a honeymoon to the Black Hills and Badlands area in South Dakota. It was a very short trip, but we enjoyed time together as a married couple and were able to experience a place neither of us had ever been to before. Later that month, I returned to my job as a charge nurse at the local nursing home. Also, my niece Lorelai Rose was born that month.

June began the summer months, and Justin was able to find a job at the local government buildings doing some custodial work. It was definitely an answer to our prayers, as we were beginning to struggle a bit financially. There was also one very tragic thing that happened in our lives. Justin's Uncle Chuck, who had just recently joined us at our wedding, passed away suddenly from a massive stroke. Justin and I took a couple of days to travel to his hometown in Illinois to be with family. Chuck was an absolutely wonderful man filled with love and faith. He left behind four children and his wife.

July was busy, but fairly uneventful for the most part. We celebrated the 4th of July, Justin's 28th birthday, and the wedding of two of my best friends, Liz and Alex. I was a bridesmaid.

August was another crazy and busy month. On August 6, we found out we were pregnant with our first child. That weekend we attended the Energy for Life Walkathon with Justin's sister and her husband and several other families affected by Mito in the state of Minnesota. We were not able to plan a fundraising event this year, but are hoping to be able to plan one next year. Again I was forced to take leave from my nursing job, as things were continuing to get more and more difficult for me physically. I had an appointment with a neurologist with the Muscular Dystrophy Association, and received a diagnosis of Myopathy which had an unspecified cause. Not much was figured out at that appointment. Toward the end of August, I had some bleeding and was diagnosed with a threatened miscarriage. At that point, things were looking pretty scary. My PCP drew a Progesterone Level and found out that my blood Progesterone levels were too low to sustain a pregnancy. We began Progesterone Injections two times per week.

September came fast, and before we knew it, summer was over and fall had begun. I took on two jobs that month, working as a paraprofessional at the local preschool and doing private home care. I was forced to resign from my other job at the nursing home, because the high stress environment was simply not going to work with my ongoing health issues.

October wasn't terribly exciting for the most part. Although my best friend Sarah got married on Halloween to her husband Marshall. I was the Matron of Honor.

November was extremely exciting. Not only did I make in into my second trimester of pregnancy, but we found out via an anatomy scan that there appeared to be no anatomical issues with our little one. And, we also found out that Baby Phillis is a little girl! Justin and I are beyond excited to welcome Amelia Marie into the world next year. We also made the trip to Justin's hometown to spend Thanksgiving with his family.

December came fast, and it is hard to believe we've nearly made it through another year. My great Grandma Cary turned 100 years old on December 9. We had several Christmas celebrations with family. In addition, we are also making preparations to welcome our baby girl into the world.

2015 was beyond crazy, and I can't wait to see what 2016 has in store.