searching for joy in the unexpected
Those of you who have followed my blog in 2015 may have noticed a theme of the unexpected throughout this year. We've moved twice, had a long landlord dispute, adopted a dog, and had to replace two vehicles (one died, one was totaled by a drunk driver). I left my job in a very hurtful way and used that to start focusing on my painting full time. I suffered a long MG exacerbation on the tail end of a fantastic family trip.
The latest unexpected came after a month of jumping through the hoops of waiting for insurance to approve a loading dose of IVIg. My breathing was being affected by MG and it made it very difficult for me to do anything other than just "exist". No long walks with Rylee at the park, little energy to paint or cook, and definitely no energy to go out and do anything. This time I was able to get it approved to be administered at home, and we made arrangements to have Rylee stay at the pet retreat he likes. I was assigned an infusion nurse that we immediately bonded with, and we prayerfully went into the 5 day infusion with high hopes. The first day went smoothly. The second day went smoothly. Then I had a port leak that had to be cleaned up and re-taped. I was okay. Then the headache started. I tried to breathe through it. I turned all the lights out, and Travis kept me hydrated and medicated while he alternated cool cloths on my forehead. It got worse, and I tried to breathe through it. But we both knew it was the start of aseptic meningitis. We tried to hold off as long as we could with going to the ER with the impending historic rain that had just started. When it got to the point where I couldn't open my eyes, talk, or move without feeling like my head would implode, I asked Travis to read to me from the Psalms. He read and rubbed my legs. Then we decided it was time to go in.
My infusion nurse met us at the ER and sat by the bed with me, across from Travis, until the pain was managed enough by narcotics for me to sit up on my own. Totally depleted after 5 hours of tests and IV medication, we came home early Saturday morning and slept until the early afternoon. Momma Stock flew in that night, catching the last plane in before the heaviest band of rain settled in over Columbia. While we slept that night, 20 inches of rain descended on us, and an IV line infection set in. We woke up to news of massive flooding, road closures and wash outs, a boil water advisory due to overflowing sewage and water main breaks. We also woke up to a bright red line moving up my arm from my IV site. We marked it, watched it, searched for bottle water, and were advised to make our way back to the ER for the infection. Another 5 hours later after blowing every IV line they tried to start, 6 attempts at blood work for cultures, oral antibiotics, and a rocephin shot (do not recommend this... when they say it is painful, imagine the worst charlie horse you have ever had, only in your thigh with your entire muscle contracting and spasming while it feels like someone is hammering away at it with an ice pick. Seriously, and this is coming from someone who has had aseptic meningitis twice and has had her sternum cracked). And our dog was stuck at the pet retreat because of the flooding that closed all the roads around us.
I was completely discouraged, and that discouragement turned into despair when I started having adverse reactions to the antibiotics. I was so sick that entire week my mom was there, and all i wanted was a hot shower (which I could not have due to the water situation in Columbia that is still ongoing). I wallowed in self-pity for about 10 days start to finish. The side effects passed. My headache and discomfort were gone, and the line infection resolved.
In the midst of all of this, I was choosing to live in my present situation and allowed that to consume me. All I needed to do was choose the acknowledge everything that came together to allow me to get through the unfortunate "ick" that surrounded me. My husband knew exactly what to do and advocated for me with the ER doctors and nurses when I was too out of it to do it myself. He ventured out for hours and drove several hours out of the way in order to get our dog. He adjusted his work schedule to make sure I felt supported and taken care of. My mom flew across the country to be with me, washed my hair, walked my dog, and rubbed my feet without complaint. My infusion nurse met us at the ER when she had no obligation to do so. Friends and family across the country remembered me in their prayers and sent me encouraging texts and messages. We were kept safe from the destructive powers of flooding in our area, and were able to safely travel to and from the ER. We never lost power.
We have had a year that has been packed full of disappointment and the unexpected that has led us on a roller coaster of highs and lows, and honestly a lot of discouragement about where we are. We have had to humbly ask for help when we would rather not bring others into our situation. I have been given the opportunity to educate others on MG through my extended exacerbation. It isn't easy to be vulnerable in situations like this, but it is necessary.
So here is to searching for joy. Here is to gratitude. Here is to the unexpected giving us the opportunity to extend grace to ourselves when we feel like we don't deserve it.