lilstargirl

Hello, there. Welcome to my page. I’m glad you’re here.

I’ve wanted to begin a blog for a long time, specifically one centered around having a chronic illness and thriving in spite of it. I’ve made earlier attempts at chronicling my life, but have found it difficult to express the complexities of what I was experiencing, and inevitably shut it down. 

It’s hard to talk about, sometimes.

I am 28 years old and have had Juvenile Rheumatoid Arthritis since I was two. All of my joints are affected, yet I still don’t feel qualified to speak on my experience or give advice. I’m working on that at the moment.

Living with a chronic illness has many challenges, obviously. 

I don’t plan on using this platform solely to complain about all the things that are difficult, nor do I want to attempt to be a perfect happy cheesy spokesperson. We all know that there’s no such person, and life is full of complex feelings and experiences. I do, however, want to share my perspective on my personal battles, and maybe in the process I’ll find a balance between joy and grief of the Arthritis journey.

High highs and low lows, baby. I want to talk about it all. 

I am still a young adult, after all. I still make ‘bad’ decisions. I drink wine on the weekends and stay up too late playing Animal Crossing. I eat the wrong foods and skip my stretches. Sometimes I forget to take my meds. Sometimes I pretend that I don’t have Arthritis.  

I have learned so much throughout my teens and twenties, mostly through trial by fire. I’ve grown and changed a lot, physically and mentally. I’ve had joint replacements and crazy transformations, surprising doctors in surgical waiting rooms. The question – “aren’t you too young for that?” – simultaneously reminding me of my youth, as well as my exhaustion. With my circumstances, as well as the question. 

It’s tough striking the right balance. Hope and practicality. Optimism and honesty. Sometimes, the burden is too much to bear, and the silver linings all disappear. I’ve had many moments where the anxiety is all-consuming, and it’s hard to see the countless blessings in my life. Sometimes, it’s easier to ignore damn near everything. We resort to numbness, disregarding any attempts at self preservation. The medications, treatments, procedures, decisions, and never ending doctor appointments can occupy so much space in our brain that we run out of room to feel anything but panic. 

On the flip side of the coin is pure glee. A true sense of pride, a sense of accomplishment. A realization that we are all just doing the best we can with what we’ve got. Unity, community, and a deeper insight into tribulation. Great relief for working treatments, and a greater appreciation for pain-free days. An elevated spirit, a healthy respect for human suffering. Delight, wonder. Inner peace.

The chronic illness experience cannot be summarized or sanitized. It is as unique as a fingerprint, and my only goal is to leave the unique imprint that no one else can. I want to make invisible illnesses more visible, and hope that others do the same. I want to hear more stories of warriors doing impossible things. I want to see us win, publicly.

I’m going to share what works for me. I’m going to be honest about things happening in my life. I’m not going to sugarcoat it, or withhold any hard truths. I’m going to be as real as possible–as real as any of us can be online. 

There’s going to be a lot to cover here. I have been ruminating on blog ideas for my entire life, so I’ve got a lot to say. I also have realized that we’re all much too hard on ourselves and rarely give ourselves credit or validation for the things we’ve overcome, so I’d like to shine a spotlight on the battles I’ve fought and won. 

Here’s what’s on the agenda: 

Sleep. Spoons. Side effects. Shots. Surgeries, and scars.

Frustrations, remission. Prednisone and other hellish drugs.

Travel tips. Checkups, checklists. 

How to ask for help. How to heal. 

Relationships. Flares, feelings, and the future. 

Hospitals, hip replacements, hermit mode.

Weight gain. Weight loss. 

Doing things you shouldn’t do. Things you can’t do. 

Losing your mind. Losing your mobility.

Fatigue. Failure. Advocacy. 

Resilience, and power.

Let’s do a deep-dive, together – a lil spoonful at a time. 

Xx,

Lil.