But since I didn't want to miss out on posting my annual 2015 recap, I figured I would start early. This one will be a bit different from years past. Instead of doing a list of highs and lows, I'll just give a short summary of what happened each month, good, bad, and ugly.
New year, new HOPE. I chose HOPE as my OneWord 2015, which ended up being more true than ever when we received the mast cell disease diagnosis on the 22nd after 8+ years of symptoms. This OneWord was especially true as I struggled with continuous, severe reactions for the first weeks of the year with few treatment options.
Went on a super fun snowboarding trip with my husband and parents to Holiday Valley in PA. Less than 2 weeks later, had my first feeding tube (Herman) placed. It was an NJ tube that delivered nutrition directly to my intestines to allow my stomach (and ornery mast cells) to take a break.
Got to spend a long weekend in VA with my family to celebrate one of my favorite holidays, Passover. Great time with family and friends, remembering how far God has brought us and His promises to us. Helped raise awareness and funding for rare diseases by being a part of the Running for Rare Diseases Team that ran to support the Undiagnosed Diseases Program at NIH.
Instead of losing Herman like we hoped, I ended up having surgery for a PEG-J tube which moved Herman from my nose to going directly into my stomach. Celebrated Nick's birthday with DIY at-home sushi making, and of course, a date night.
Semester ended, another school year finished. There was a mix of relief that my body could finally rest and apprehension not knowing what the summer would bring health-wise. In mid-May we joined my parents, brother, and a close friend of his on an Alaska cruise to celebrate my brother's graduation from UVA and new job in CA. The cruise was incredible and we had a fantastic time!
Not much going on since I didn't work this summer. Because my symptoms were continuing to progress, we decided that I needed to take the summer and try to rest and recover so I was ready for the fall semester. I had a follow-up with my mast cell specialist in MN which was a good appointment and gave us some more treatment options to control my symptoms. Also got to visit my aunts and cousin in WI and one of my close friends in IL.
Spent a long weekend in VA visiting my family and going to a conference. Also started having more symptom progression and developed trouble walking and balance issues. Ran my last run of 2015 this month before my symptoms progress to where I was unable to run.
Made some tough decisions in August. Not only was my body still out of control like it had been last school year, but my new symptoms continued to progress. Made the hard choice to give up my assistantship at Kent State knowing I was unable to keep up with my work and responsibilities there.
Celebrated my birthday at the beginning of the month by starting a part-time job at a physical therapy clinic. (Side note: totally a God-thing because I don't have ANY record of even applying for this job.) Also celebrated our 1 year anniversary with a weekend away at a bed and breakfast and a trip to the Toledo Zoo.
Symptoms reached their maxium severity as we continued trying to find answers. We started pursuing answers from specialty clinics around the country, desperate for insight and answers. Despite the progression of my symptoms, we still found things to smile about, liking bringing Leni home at the end of the month as my service dog!
Found some doctors willing to work with me and actually wanting to help find answers. Celebrated Thanksgiving with my in-laws and visited my 98 year-old grandma in NY.
Finishing the year how we began, with HOPE. Leni got her first non-training alert and reminded us of our hope that we will be able to gain back some control over my reactions. Traveled to MN to see my mast cell specialist and were reminded that despite how rough things are right now, we still have many options and can't give up hope. Spent time in VA with my family and was reminded WHY I keep hoping...because I have family that I love and if I give up hope, it hurts them even more.
What. A. Year.
This year has been TOUGH, but it has also brought more smiles and laughter than I could have ever imagined. Thank you for walking through life with us and being a part of our story.
Happy New Year!!!
So many ups and so many downs
So much laughter and so many tears
Belief that God is in control
Desperation far beyond any fear
Peace in the midst of consuming uncertainty
Determination in overcoming grief and loss
Strength coming during times of weakness
Overwhelming joy because of the cross.