We sleep in shifts at our house. Mom sleeps like a normal person, while there is a 90% chance I’m falling asleep around 4am or staying up all night. Gracie stays with me at night so we consider ourselves night watch. Thankfully, we have a routine where mom wakes me up and brings my morning meds, so we stay on schedule.

Insomnia is pretty common post transplant as some of our meds cause us not to be able to sleep. It comes up pretty much every week in Facebook transplant support groups, with people desperate for relief and sleep. We’ve tried melatonin but it causes me to have vivid nightmares and triggers my PTSD.

Insomnia isn’t just annoying it can be problematic. The interesting thing is that migraines can be caused by not enough sleep or too much sleep so I’m constantly trying to strike a balance of getting enough sleep but not too much…basically insomnia leads to other problems, but it just comes with the territory.

In other news, I’ve been battling the crud since Christmas Day. Mom also caught it but she’s past it. Whatever viral infection turned into a bacterial sinus infection for me, so I’m still feeling yucky. My transplant team started an antiobiotic last week, so hoping to feel better soon. It pretty much requires me to fall asleep with an ice pack on my face due to all the pressure.

After battling a migraine for a week, we went to the local ER, one day this past week. I had the nicest doctor who listened, treated appropriately and explained that infections trigger migraines, so she wasn’t surprised. She wouldn’t let me leave until I was pain free and the headache broke. It was so nice to be seen, talked to and treated like a person. She understood that my multiple health conditions play into each other and it’s nothing I do or don’t do. I didn’t realize I needed it, but the visit was healing in more ways than one.

Speaking of migraines, my pcp added some supplements to my medication regimen that are supposed to help prevent migraines. I already take magnesium and Vitamin D, so we added coQ10 and B2 to the mix. She and I hope these 4 will calm things down. We’ve also talked about acupuncture & manipulation therapy as part of our treatment plan.

Supplements are not regulated like meds, so it’s important that you speak to your doctor about them and purchase from a reputable company. Adding these supplements takes the total number of daily meds to 25.

We head up to Hopkins next week to meet with rheumatology and see the pain clinic and transplant clinic. We are seeing pain for a consult to remove my defective spinal cord stimulator, which is preventing MRIs we need. We are then seeing my transplant coordinator NP, to get labs, check on things, etc. and we are having a rheum followup to discuss treatment of my joint pain.

In other news, we got the results back on the heart monitor I wore for a week and it was good. Because they don’t connect some of the nerves to the donated heart during a transplant, it isn’t uncommon for the electrical circuit of the donated heart to be a little wonky. Luckily, mine is just premature ventricular contractions (PVCs) and premature atrial contractions (PACs), which right now are benign. Basically, my heart sometimes beats out of rhythm by throwing an extra beat, but is able to get itself back on track. Of course, my heart would be extra, why not?

We’ve had a quiet couple of weeks here. We have about half of our Christmas decorations down at this point. We are getting through all the tasks that went by the wayside when we both got sick and we can see the kitchen table again. We had prepared some freezer meals at the end of December, so between that and delivery we’ve survived.

And of course, since it’s already January we have started the countdown to Moms Birthday in early February. She celebrates all month long and I love that about her. She knows life is to be celebrated!…Even if she is 74! Just kidding..someone asked her age and I couldn’t remember so I said 74 and it’s become a running joke. She’s still forever young!

Also a friendly PSA-please get your skin checked by a dermatologist. I had a pre-cancerous lesion removed at the end of 2023, and now have to be rechecked every 6 months. Wear your sunscreen. I’ve tried them all, so let me know if you need a suggestion. My top favorites are Clinique or Supergoop unseen sunscreen for my sensitive skin.

Lastly, as the year kicks off and you’re met with the same challenges, remember it’s okay to ask for help. One of my college professors, told us to figure out what battle we’d always fight for. For me, it’s going to be mental health. I’m deconstructing the lie that it can be prayed away. It’s literally a chemical imbalance in the brain. Yes, use prayer as a tool, but don’t listen to anyone who tells you to just pray more. (…steps off soapbox…)

While Therapists are in short supply, just know, I’ll always have the porch light on and a cup of coffee for you, if you ever need it. I’ve learned mental health and healing is just as important as physical healing.

If the church has never been or isn’t a place of healing for you anymore, please don’t step away from God. I tried that, I’ll save you the heartache, it isn’t pretty or worth it. Perhaps step away from that specific church, but not from God. I’ve witnessed far too many people try to get through hardship in the past few years, without God. No one wins. Hope doesn’t win in that moment. So if you find yourself, in the same place you were a week into 2024 as you were in the last week of 2023, don’t give up on yourself, on God or on others. God saw things in 2023 you didn’t, to prepare you for the path ahead in 2024. Let hope win and trust that He will guide your steps in 2024. Let us begin…