03/30/2026
โจ31โจ
Turned 31 yesterday and 30 was a doozy ๐
I learned a LOT about my body this past year. I was diagnosed with:
-EDS
-POTS
-MCAS
-Primary Immunodeficiency (Specific Antibody Deficiency)
-and I got my appendix out ๐ฅฒ
Everyday, I wake up, take my blood pressure, take a pharmacy of medication, have another medication regiment that I do every 3.5 hrs while awake, and take another entire pharmacy at night after I take my blood pressure again. Every two weeks, for the rest of my life, I have to administer my own plasma infusions at home through a ScIg Gravity Infuser for an hr and a half (3 needles!!). I go to PT every single week on top of my myriad of other doctors appointments. I use a cane to get around. I spend a LOT of time alone. It's expensive and exhausting.
However, I now know exactly what my body needs. I'm still learning more things about it but I feel a weird sense of calm in knowing me so intimately.
I spent my birthday weekend in a cabin in Calvert County with my favorite guy to reflect on this past year. I experienced SO much grief and anger this past year but I finally feel like I'm reaching the point of acceptance. Not accepting that this is what my life has to be but rather, accepting that just because my body's needs have changed, it doesn't mean that I can't find new joy through accommodations.
30 was also the year that I launched the project I have been wanting to do my entire life, . Even through all the loss, I was able to stay focused on who I was and find new ways to make my dreams come true. Plus, I get to work on this project with Brett which reminds me of how we met! I'm really proud of the human I am becoming.
Disability is expensive so if you'd like to give ya girl a birthday gift, please join my graphic novel Patreon! This is my main source of income these days because I can't work. I know times are tough but wouldn't you like to get a little treat every month AND help out your favorite disabled queen?? ๐๐ป๐ฅบ๐๐ป Head over to the link in to join the Patreon or donate funds ๐ฅฐ
Anyway, cheers to 31, I'm excited to see who I become ๐ป
XO,
Ivy Rose