May: Where did you go?!

Life keeps moving, and this journey is unfolding. I'm definitely feeling more optimistic about this new medication routine than I have in the past. The real challenge will be as we gradually reduce the prednisone—let's see if my flare-ups stay under control and if my spleen and lesions don’t start to grow or multiply. If they do, we’ll just have to pivot... trial and error, that’s life, right? Finding the right balance in life is never straightforward, so why would this be any different?! I'm starting to plan my trip back to the Mayo Clinic in September... if anyone wants to join me, just let me know; it’s bound to be an adventure!

This past week was what I call a trifecta week: Prednisone, Methotrexate, and Humira. It's like I've got a pharmacy working overtime inside me. I was doing pretty well until Sunday hit, and then I crashed. I was dealing with all the physical side effects, plus a bunch of emotions surrounding my current circumstances. Let's be honest, who would enjoy feeling like shit every day for the last 10 months. I take my meds from Thursday to Saturday to ensure that I can rest up over the weekend, if I need to. The good news from last week is that after waiting 4 months, I finally had a face to face with the Endocrinologist to help manage the diabetes caused by steroid toxicity. He suggested Wegovy + Metformin, which I was super excited about! No more giving myself insulin shots 5 times a day, and this might help me maintain my weight or maybe (fingers crossed) even lose some of the weight I've gained from my medications. Sure, it's two more meds to add, but honestly, there's a chance this could actually help my body; I haven't been told that in months.... instead the medications make me lose my hair, nauseous, shake, fall etc.

When it comes to driving, the struggle is real. I get tired super-fast, like I'm a 90-year-old just trying to venture to the mailbox. Wearing a back brace while driving? Yeah, that's not just tough, it's downright uncomfortable and freaking awkward. But I'm still trying to handle the pick-up or drop-off for Briggs a few times a week. It's only a 2-mile drive, but let me tell you, getting out of the car to pick him up at the classroom door is a whole production. Just getting myself out of the car is a struggle, and then grabbing my keys, wallet, and the travel walker from the trunk is when the real shit show starts. (yes, I said travel walker, its much lighter and enables me to get it in/out when I am alone) I'm sure some parents/grandparents/nannies watching my pickup production live must feel pretty good about their own life. My longest trek was taking Ella to her pitching lesson, which even had me driving on 495... if you know, you know. Ella helped me out of the car, got my walker, and the staff directed me to the hidden ramp. Ella and her coach were working solo in the back of the facility, which was optimal for social distancing. After the lesson, Ella thanked me for coming and said how happy it made her... that made every ache and pain totally worth it!

So, as you probably know, almost all my "hangouts" with friends have been through texts or calls because well, it's been winter, so meeting or eating outdoors isn't possible. But this weekend, I figured out a workaround by meeting a friend and her husband at a private spot my family owns, which is currently under renovation. It's got this cool industrial vibe with high ceilings, super spacious and open, so we could do the whole social distancing thing... totally reminds me of Covid Restrictions! Still, it was a nice change of pace, and I actually got to chat in person with my friend. I wasn't feeling too great that afternoon, but there was no way I was going to miss out on some real-life interaction. I might be one of the only softball moms excited for tournaments to start in June when I get to be outdoors, watch my daughter do something she loves, and have adult conversations; makes me feel like I have some sort of life. I am definitely embarrassed that I'll be using a walker, wearing a back brace and look huge but this too shall pass; at least I keep telling myself that, but I would appreciate if it would pass a little faster.

We got to make our own pizzas again at my parents' house with that outdoor pizza oven. My husband played chef and operator, but this time there were way fewer people. I threw together a pizza without sauce, using vegan cheese, mushrooms, and spinach, then added a little balsamic glaze after cooking. It was tasty and easy on the stomach, which was good as my stomach has been off from the medications. My hunger from the steroids has eased up a bit due to the slow reduction of the prednisone every two weeks. Plus, I finally had a face to face with the endocrinologist after a four-month wait, to help manage the diabetes which is caused by the steroids. Just to clarify, I had no sugar issues before this whole mess; thanks, steroids, the gift that keeps on giving. Anyway, the great news is he adjusted my meds and is letting me use Wegovy and metformin to control my blood sugar. Even better, this might help me avoid gaining more weight or even lose some of the extra pounds put on from my medications. A lot of the weight gain is water weight from the steroids, so losing it will probably be tough until I'm off them completely, but if I can just maintain for now, my body and mind will be super grateful. This does mean more meds in my weekly routine, but honestly, I take this shot with a big smile on my round moon face!

I spent some time outside with my family as well, which was refreshing and gave my super pale self some much-needed vitamin D. I took Briggs out to ride his tricycle while I relaxed on my walker seat on the porch. He was so excited to show me how fast he could go and had me counting his "races" around the driveway. Honestly, his outfit was the best part—rocking rainboots and sunglasses, just a total vibe. Even though the weather was terrible, the kids refused to leave the pool and hot tub. Sure, it was 82 degrees in there due to the heater, but they were freezing once they got out. I managed to sit on the back deck, watching them splash around while chatting with my husband and dad, which was a really nice change. No steps required to get to those seats and fresh air, thumbs up.

This past week has been a real rollercoaster. I'm trying to stay in the moment and push myself a little, but I hit a wall when I overdo it. That's when my body starts to give up on me. The nerve pain and muscle aches are the toughest parts for me right now, besides my big ass. I'm taking Gabapentin to help with the nerve and muscle pain, but it needs time to kick in... so I'm just playing the never-ending waiting game. I wouldn't wish this disease on anyone, even my worst enemy. The lack of research and the time it takes to find the right resources or plan of action for your specific case is insanity. The trial-and-error process is tough on both the body and mind. Finding a way to keep going each day, especially on the rough days, isn't easy, but my kids are what keep me going. A smile is worth a thousand words.

Once more, I want to express my gratitude to everyone who has contacted me through text, email, calls, and notes.....all this wonderful positivity truly motivates me. Nothing lifts your spirits quite like a good meme or a funny picture! It's the small things in life that hold the greatest significance, and I genuinely appreciate it.