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