This week was a doozy. Monday night, my migraine got so bad, I was laying in the middle of the bed in the dark sobbing just begging for any relief. I had had the same migraine since Saturday and was trying to just tough it out until Wednesday, when I would finally get Botox again. Mom made a command decision and took me to the ER to get some medications.

We had met with a new local neurologist who also does Botox injections, the week prior to discuss him taking on my case. The reality is that some local doctors feel my case is beyond their scope and I don’t always get a warm welcome. But he gave us a warm reception.

This neurologist was knowledgeable about transplant medications and immediately identified my trigger, tacrolimus, and that since we can’t remove it, we have to manage the migraines. His office also has an infusion center that I can go to when I’m having a long migraine instead of the ER which will be much cheaper and hopefully help. The truth of the matter is that we have tried all options that are cardiac safe and I’ve failed every therapy. He is confident though that if I get on a regularly scheduled Botox schedule we can minimize how much they happen. We all agreed it’s much easier to drive to Reston than it is to Hopkins every 12 weeks.

On Wednesday, I received my injections in his office. Unfortunately, they cause me to have an inflammatory response to the toxin entering my body. I get a migraine within hours of the injections and my whole body hurts, muscle aches, joint pain, nausea, vomiting. I was up all night miserable. It wears off within a couple days and its benefits start to take effect but it’s rough. Managing one health issue, triggers another for a few days. Because I missed for a few months, my body wasn’t used to it, so this time my body’s. response was pretty bad.

Thankfully, I figured I would get a migraine at least and planned ahead by turning in my final paper for grad school this semester early this week. I can officially say, my first semester of Grad school is done! 🎉 looking forward to my classes next semester and also having some time off during winter break.

🎄 Mom and I are slowly tackling Christmas decorations. . We’ve also enjoyed finding a few thrift store Christmas treasures to add some new decor to the house. We are avoiding stores for the most part and did a lot of our shopping online early this year (perk of having endless time in an ER and a phone), hoping to avoid the holiday stress. So far, it seems to be working. I also feel like it is my duty to tell you all, that you can get flameless advent candles on Amazon with a remote and timer. Ours are on the way, because we are the worst at lighting the advent wreath. You are welcome, for this little golden nugget of knowledge.

We are also enjoying being home and having the time to tackle the little house things that get pushed to the side. We aren’t messy people but it’s amazing how quickly mail stacks up, things pile up, laundry gets back up, because we are dealing with the health crisis of the week. Our energy just doesn’t get spent on laundry and housework. But with Christmas decorations going out, it naturally leads to things getting put back in order.

One thing we’ve been keeping our eyes on is the date. On December 21, God-willing, I will not have been admitted to the hospital in a year. Only 14 days to go as of writing this. That is a huge testament to transplant, as prior to, I was admitted several times a month. Yes, we have had countless ER visits for a variety of issues, but never admitted. You don’t understand the gift it is to have doctors listen to you in an ER, listen to your team’s instructions, get you stabilized and okay to go home.

To be honest, December is typically a hard month for me mentally. I love Christmas and all the traditions it brings. But new years lurks right around the corner. And for someone with chronic illness, a new year comes with mixed reviews. “How far have I come? We didn’t really make much progress..that got worse. Will the new year even bring any change?” runs through my mind a lot.

If you find yourself there, for whatever reason burdens your heart, know you are not alone. If you don’t feel all holly jolly, that’s okay. Perhaps you aren’t meant to be united with the joyful alleluia of the angel this season. Perhaps you are meant to ponder the worry Joseph must have felt as the Holy Family fled? Can you imagine traveling with pregnant Mary and the son of God? I’d be a nervous wreck. I find myself feeling connected to Joseph this year…knowing the miracle about to unfold but knowing the path to get there. Wherever your heart is this advent season, sit with the manger and allow God to speak to your heart. Maybe you’ll find yourself as the shepherd, or even maybe the sheep. 🐑 I love sheep.

Just know that no matter the highs and lows that life may bring, you are so close to the infant Jesus this season. Take a moment to rest in his presence and find peace. That my friends, is how Hope Wins.