Hello friends,

I can’t believe it’s mid May already. It’s been an interesting first quarter of the year for us. As my transplant coordinator put it on the phone the other day, “you’ve had a really rough first part of the year”, and that is correct.

It’s only May, and we’ve dealt with the flu, stomach bug, UTI, strep, GI issues again, two hospitalizations for heart failure and so much more.

I decided not to share all the excitement that filled our first part of the year. Not only was there physical ailments, but looking back I was in a deeper depression than usual. Everytime I got sick or an infection, it caused my joints to become inflamed, which meant a lot of sleepless nights and constant pain.

In good news. We’ve finally figured out why my back always hurts, and it’s that my SI joint pops out of place. My PCP is able to do osteopathic manipulation (it is not chiropractor type stuff, which I do not trust), to help pop it back into place which alleviates the pain until it slips out again. That can be a week, two days, etc.

All that chronic pain wears on you physically. But in my opinion, mentally even more so. It can become hopeless very quickly. Not only does this chronic pain get triggered by infections, but also my migraines. I was on a good streak for awhile with no migraines, but we are back to almost weekly. Thankfully, we are trying Botox again in 10 days! (PS: life hack: can’t get into your doctor? Send him a direct message and watch his office call you in 24 hours! It’s even better if you mention transplant, they try to get you in sooner. One perk of transplant life).

In other news, we are officially on the last 3 weeks of steroids! After starting the taper in January, we are almost done. After 1300+ days and over 60 pounds gained, these suckers are almost done. I can’t wait to be off them and finally able to lose weight and feel better. This is a huge accomplishment. And the hard work of multiple specialties working to find other meds that work together to keep my inflammation in check! I think I might throw a done with steroids party for myself, mom and the pups they day we are done!

Speaking of weight, my team has approved trying monjaro, the diabetes injection. I am extremely insulin resistant, and this medication will help with that. The hope is that it will offer the heart and kidney protective features they are seeing as well as assist me in losing weight. This will help endocrinology with diabetes control and thereby help protect the heart. And my goal is to get back down to my pre-transplant weight. Let me just take this opportunity to ask a favor, don’t comment on how someone looks or their weight. You don’t know if they are on meds causing them to gain or lose, they could be suffering with not eating or eating too much as a coping skill. It’s just not okay. Unless you are someone’s doctor.

Take for instance this photo I reposted yesterday on Facebook. My face is so swollen thanks to the need to increase my diuretics. The next day, my face wasn’t so round and my leggings were loose. I love the sentiment about this picture, we’d made it to the 3 years post mark. But it’s really hard for me to lookout, because I don’t like the way I look. It took awhile for me to realize it’s temporary and part of keeping my heart safe, was taking the steroids. It’s hard each day to look in the mirror and wanting your face thinner, your belly flatter, your arms not flabby.

I’ve spent a lot of time grieving this body of mine, the transplant itself. But I’ve been asking God for the grace to accept what is and the grace to change what needs to be. Our Lord knows me and that we have to go slow, so for now, it’s finding excitement in no more steroids and the ability to take care of my body, one step at a time (literally).

The first four months were hopeless at times, but it’s in those moments that I envision Jesus carrying a baby sheep, reminding us he’ll carry us whenever we need, and that my friends is a place of hope, nuzzled in the arms of Jesus.