Sprinkles of Joy Atop a Catastrophe Cupcake

 

As you may know, I have been open with my struggles regarding my chronic illness currently. Things have not been great for me as of late, though my quality of life has improved very slightly after my recent admission. I am grateful for any amount of improvement I can get. I refuse to be made invisible by my illness. I want to celebrate and illuminate all the joyful moments, I wish to see and live through their eyes rather than let the heavy moments swallow me whole. This is not to discard these heavier emotions or seal them away, as I have come to know that they have their place too. I simply want to uplift and recognize slivers of happiness, and thank them for keeping me afloat. 

I am so beyond grateful to have such a beautiful and unique space to rest and sleep in. I often experience an increase in pain and other distressing symptoms at night. My galaxy light projector gives me something to watch as I am laying down, looking at the ceiling. This helps me focus on something other than the pain. It also gives a dynamic element to the space, as the colors swirl and shift overhead. I also have a heating pad to help manage pain, and several pufferfish plush friends to provide emotional support. (My pea puffers have usually gone to bed by this time). 

Yesterday I was able to finish this self portrait I'd sketched out a few weeks ago. I am so happy I had enough energy to create this piece, as often the pain and fatigue make it near impossible to do anything other than rest in bed. I am very satisfied with the way this painting turned out, I am really happy I went through with my decision to add the swirling details in glitter gel pen. I have a feeling that little me would absolutely adore this piece as well. It always feels good to do things for your inner child. Getting dressed up in pink and trying on princess hats (I recently learned the correct term is a hennin) will always be a joyful occasion no matter my age. 

It was warm enough a few days ago to wear my gorgeous new dress without a coat! It made me feel like a fairy princess from a storybook. Walt and I went to the park and I made him take pictures of me and then we went and got tea. I'm so glad we were able to take advantage of a lower symptom day! 

My favorite perfumes are so comforting to me. I've always been the kind of person that's very tuned in with their sense of smell (to be honest I'm just autistic) and I'm quite particular with scents. Wearing perfume helps me feel more like me when I'm not able to dress up in himekaji. I've been wearing Glossier You for years now. I bought the Ouai perfume because I really like the smell of their hair products. It smells like a rose garden in the best way possible! I get so many compliments on the way I smell when I'm wearing these two perfumes together. 

The latest addition to my pufferfish plush collection, Chamomile! She is my largest plush and is perfect for hugging when I need a good cry. She is so adorable! She is also fairly anatomically correct for a pufferfish (no dorsal fin, fins on top and bottom of tail) which is difficult to find. Many companies don't do their research on what a pufferfish actually looks like before designing and manufacturing plushes. I am also just a nerd when it comes to these kinds of things, I will admit. 

If you made it this far, I appreciate your time! Thank you for sharing these joyful things with me. There is so much more in my life that brings me immense happiness that I didn't touch on, such as my incredible partner. I just wanted to highlight a few little things as of late. I am so grateful that I have the opportunity to be seen at Mayo Clinic in a few days. I will keep you guys updated on how that goes. And one last thing, I am so so thankful for all of you! My little internet community is so lovely, thank you all for being wonderful and for your support. I love you guys! 

XOXO, Lumie