Today: Get on the roller-coaster

Today has been really rough. I won’t sugarcoat it. There are days when I just think, why is this happening to me? Honestly, this illness has robbed me and my loved ones of so much. It impacts not just my life, but also my kids, my husband, my family, and my friends. It’s tough for me to handle, and sometimes I forget the importance of checking in on those around me. They also need support & communication to cope with this disease taking permanent residency in my body. The days when everything seems to crumble are the hardest. I rely a lot on those around me to help get me through this disaster and sometimes I know it’s overwhelming. The medication takes over as well often making me a beast to deal with; that’s right I’ll admit it…..it’s like a horror show and I’m the demon with no control of my powers🤯.

I even did the hair I have left

You might think I’m a selfish witch right now or that I don’t care at all, but that’s not the case. I truly appreciate every single person who has influenced my life in the past few months. Let’s be real, I’ve never been the warm and fuzzy type. Sorry, that’s just not who I am….. but that doesn’t mean I’m ungrateful, oblivious, or indifferent. (Just to clarify, I do cuddle and show love to my kids and husband….. I’m not that heartless!) I excel at communication and writing…. just not using physical gestures (hugs, kisses, pats on the back etc). My gratitude and appreciation come through my words (whether written or spoken), thoughtful gestures, or meaningful gifts, etc.

New ramp gives me a lot of independence to come up with my walker! Now I don’t need someone home when I come and go all the time!

My goal is to discover ways to be more self-sufficient, even when I'm in pain or feeling down. Some of the problems caused by Sarcoid are here to stay... they've made themselves quite at home in my body, like bees buzzing in a hive. I need to strive for a new normal while safely pushing myself to be more independent. To put it plainly, I need to figure out how to get shit done without having to ask for help all the time... gaining a sense of independence like a toddler who learns to walk. Making these changes might be physically tough and painful, but they will also be mentally beneficial for me and my caregivers. The hope is that with the right medications and ditching the steroids, the side effects from the toxicity will start to diminish... leaving just the sarcoid in the bone and bone marrow. (My new best friend) The spine and ribs should stop breaking out of the blue, which would be fantastic, and the osteoporosis should improve. Everything hinges on the safe discontinuation of prednisone—will the sarcoid react positively to just the other medications?! Let's all keep our every part of our body crossed which is able!

Wow looks about right 🤪😝😜

This week, I pushed to do some driving. I did pick up/drop offs for Briggs at school. I also made it to field day, which was awesome. I did bring along my older daughter to be my legs & mover. However, I was able to watch, take pics and be there for my son.

field day games

In addition, I got my older daughter to her softball practice and even stayed to watch with my son! After practice we went to make some returns, my daughter was my runner in and out as it takes me a long ass time with my “old lady” gear. The kids then ran into 5 Below to grab water guns & a basket ball….. they were so excited.

The much desired basketball

The last big adjustment for me, was that I parked on the side of the house, by the charger for my car, instead of right out front. This gave me some more walking steps as well as tasks to complete, like plugging in my car, before getting to the ramp.

my car with the charger plugged in….. she is def happy to be finally getting a charge

Needless to say when I got home from each of these outings I was exhausted as well as in a LOT of pain, but I took my pain meds and relaxed for a while. Using the walker and wearing the brace (my old lady gear) is necessary, I totally feel the difference when I don’t! I hate it…. Like legitimately despise “the look” but what I’m learning is that right now how I look is not nearly as important as ensuring there are no more falls or ambulance calls.

about as good as it gets these days 🤷🏻‍♀️

Once again, I want to wrap things up with a big thank you, straight from my heart. Honestly, I couldn’t do, go, or see anything without the help and support of my family and friends. If you’re in need of a hug, just give me a shout and I’ll bring out my soft side just for you all. The calls, texts, emails, pictures, and memes really keep me going every single day. The love and support I receive push me forward, especially on those days when all I want to do is stay in bed and tell PT or the Nurse to take a hike. (Polite version) The best news is that the weather is finally nice, so we can hang out outside to chat, grab coffee, watch some softball (if you know, you know), hit the park, and more! I can’t wait to see all of you, not just hear your voice or see you on FaceTime… just no hugs or kisses, which, if you know me, you’re totally used to by now 😜. Gotta go and make breakfast for dinner for the family! 💕

My omelet with spinach and vegan cheese!