Emotions: A week in review!

A common theme I see in the comments of #sarcoidosis support groups, is the frustration and sadness surrounding the judgment they receive from others instead of unquestioned support. It’s easy to pass judgment when you’re not the one struggling daily. If you’re healthy, it’s tough to imagine what it’s like to deal with chronic illness….. waking up in pain every morning with no sign of relief. It’s easier for others to dismiss it as “fake news” rather than taking the time to understand the reality. It’s not fair to judge someone due to a lack of understanding. I used to be pretty judgmental myself—no kidding, I could be a real asshole at times—but this experience has really humbled me. Who am I to make assumptions about someone else’s journey, especially when I haven’t walked in their shoes? It’s less work to make untrue judgements than take time to understand. However, I can tell you that it warms my heart when those around me take the time to educate themselves, ask questions, do their own research in order to more effectively support my journey.  I have come to realize that I cannot change those that are judgmental….. all I can do is adjust the way I react to the comments, looks and lack of support.

let’s support one another instead of judging

I’ve been dealing with the looks and comments from strangers while I’m out with my walker, back brace, mask on, and moving at a snail’s pace. I mostly avoid going out because my immune system is really weak, but honestly, a big part of it is just feeling embarrassed. I hate the idea of being judged or feeling like everyone’s watching me. Plus, I’m not exactly thrilled with how I look right now (Pillsbury Dough Girl). The only thing I can change is how I react to the suggestions, comments and questions. That’s way easier said than done! It’s tough not to feel unheard, sad, or judged. Honestly, feeling sad takes less energy than trying to rise above the negativity from others. Refocusing my energy seems impossible sometimes but putting in the extra energy is necessary.

This week, I hit a breaking point and decided to get creative with problem-solving and tweak the way I complete a few tasks to feel more like myself again. Some might think these “wins” are small potatoes, but given where I’m at right now, I felt a real sense of pride in my creativity.

Briggs and I love baking together, but standing for more than a minute or two is tough these days. So, I had Briggs bring over one of our stools from the island, and I sat my fat ass down. He was on the counter, which isn’t usually allowed, but desperate times call for desperate measures… we whipped up some muffins! Sure, I was in pain, but I pushed through, and got to share a special moment with my son. We were laughing and he was smiling; these are the kinds of moments I really need on this journey to keep my heart from freezing!

My makeshift cooking station

I also came to realize how crucial it is to safely get out of the house during the week. The first step is to get a better walker that’s safer and more effective. Insurance will cover it… but the process is a hassle. This week, I took some time to get the paperwork sorted and push things along. My aim is to have someone drive me to 1-2 errands a week, midday (less traffic) with my walker (or a store wheelchair if needed) and double-masked. I also got my beautiful emergency alert bracelet. It was difficult to push the order button but when I think about the security it gives me, especially when alone, it was worth taking the step. After reflecting on my situation, this intricacies of my plan might not be foolproof, but it’ll give me a bit of normalcy. Boundaries still do exist and I continue to be unable to attend events, eat out during busy times, or mingle with crowds in public spaces. It is imperative that my modifications still allow the meds to do their thing and do not create unnecessary obstacles! (Fingers crossed!)

My sparkling new medical alert bracelet!

This week did have a few little victories. I get that this situation isn’t going to fix itself anytime soon, so it’s on me as a mom, wife, and friend to find ways to keep pushing forward. Sure, I have my days filled with tears and self-pity, but who doesn’t? I have to keep getting up and being there for the people I care about, no matter how tough it gets. It breaks my heart to see how this impacts my kids, and as their mom, I’m determined to help them through it. I need to protect them from the moments when I feel like giving up or when I’m screaming in pain. This isn’t their fight!

Made some nachos for dinner… made by me in the seated position.

Mayo Clinic is on the horizon, set for 3/23/25! I've started getting ready for the trip, both physically and mentally. The fact that I’ll need a wheelchair in the airport and to get around the huge  hospital weighs on my mind a lot. I tell my daughter everyday not to care what others think, but here I am doing just that! I hate the stares, comments, judgement….:. I don’t want to look or be like this but right now this is my reality. I’m working hard to get past this and to a point of acceptance for my travels. A lot of it stems from my lack of confidence based on my current physical appearance, like a troll! There is no choice but acceptance right now to keep moving forward…… so I continue to put in the effort.

I even took time to blow dry my hair this week!

I'm holding out hope that this visit will provide a plan of action to move forward. This process has taught me that it's crucial not to put all your eggs in one basket, so I'm staying optimistic but also preparing for the possibility that i won’t get a miracle. Next week I do have a few appointments with the rheumatologist and brain scans. The positive take away from this week was that I’ve managed to increase my methotrexate dosage and therefore slightly decrease the prednisone. I am hopeful that this process can continue in an effort to get the steroids down to the lowest daily dose—steroids or better known as the poison! 😂🤪 Of course, like with any meds, there are side effects: constant nausea, tremors, mouth sores, hair loss, memory loss, slower processing, numbness of hands/feet, and a few other delightful new attributes. It's all about taking the good with the bad in the medical field. There is a chance that Mayo Clinic may decide to change my medications….. for now I continue down this path until I’m instructed otherwise.

As always, thank you to those who continue to check in because you care! This battle sucks, no other way to put it, but having people to support me as I ride down this pothole filled road, popping tires constantly, is much appreciated. The texts, calls, emails, videos, memes etc. don’t go unnoticed or unread….. I love them all. I look forward to warmer weather and being able to spend time with friends and family outdoors; bbq’s, softball tournaments, T-ball, playground and more! Maybe even make some charcuterie platters to share. Let me know if you’re up for any outdoor facilities as the weather gets warmer.

Ready to see my friends on the Softball field!