Because why not? 🤷🏻‍♀️2023 is not leaving quietly.

In the past month, I’ve had…
A sinus infection 👃,

migraines 🤯,

Passed a kidney stone,

a reaction to Botox last week 💉,

a stomach bug over the weekend 🤢

and now a viral cold infection 🤧

…oh and I broke my toe and walked on it for 4 days. 🦶

All the viral/infection stuff is the reality of being immune compromised in the middle of cold and flu season. If you don’t want to be sick for Christmas, you might want to put a 😷 on. Everything is going around and the virus-that shall not be named-number’s are trending higher.

Let’s see, to follow up to last week-pretty much everyone has a different opinion on the Botox situation. Tx is in favor of not doing it again or at least only letting Hopkins do it. My PCP would like to premedicate with steroids and see what happens, rheum thinks it’s a hypersensitivity reaction (aka, he doesn’t know) and neuro’s response is still pending. I haven’t had a migraine since the Botox so I’m in favor of pre-medicating and trying again in 12 weeks, but we’ll see. We discussed seeing an allergist but because I’m on steroids, the testing would not be accurate.

We are looking into other ways to manage the migraines, like therapy to manage stress, massage therapy to relieve tension and pain, acupuncture which has shown benefits in studies and adding a combo of supplements in (riboflavin, magnesium, CoQ10, Vitamin D). We have about 10 weeks before the next Botox, so we have some time to figure out our next steps.

The end of 2023 and the beginning of 2024, is filled with a lot of followup appts coming up-

Dermatolgy for an annual skin check. My transplant meds make me ip to 200% more susceptible to skin cancer so we are supposed to be checked annually. It’s been two years since my last check so getting that checked off the to do list.

PSA: Ladies, don’t forget to schedule your annual exam.

My PCP – We have appts scheduled every 10-14 days to stay on top of things. We are hoping this helps us get out of crisis mode and into tackling other things on our list. She also does manipulation therapy, as a D.O. and this helps with pain management.

Hem/Onc-i am chronically anemic, so he manages that. We are also repeating a lung CT scan for some nodules we saw in April, to make sure they have resolved. They were an incidental finding on other imaging, but we need to make sure they have gone away, so another scan it is. I’m pretty sure I glow in the dark at this point.. Prayers appreciated, of course.

Endocrinology is also coming up. My insulin pump has a smart function which takes a couple months learning your patterns and responding with the correct insulin or turning off the insulin. Mine finally learned my patterns and we are staying below 250 for the most part, which is huge due to the steroids causing a daily spike. This appt we will tighten things up and get even better control.

Pain Management-we are doing a consult in early January to get my spinal cord stimulator removed. Its battery is malfunctioning which is preventing us from getting two MRIs my docs want. I don’t use it-so we are hopeful we can remove it and transplant gave the okay to do so-as it would require general anesthesia.

And then there is my silly toe. Mom’s bed post has metal at the bottom and I went full speed into the sucker with my big toe-breaking it. I thought I just bruised it and kept walking on it for 4 days. If you want to also ask, seriously? Seriously? We are right there with you.

Mentally, it’s been pretty draining and my holiday spirit is more grinchy than anything at this point. It always seems like something happens at Christmas time and our Holiday isn’t what we expected or wanted. And that’s okay, too, if your holiday isn’t all holly jolly.

Today, I’m super Grateful for friends who love and support us in big and little ways. Like our dear friend, who said let me take care of one thing and dropped off lunch today. And who reminded me, that even though it’s not clear how, God will use this for good.

I’ve seen God work miracles and take care of things big and small. So I am allowing Hope to win again and continue to believe He’s got this.

#becauseofJesusandaDonor

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.