Looking back on today being Rare Disease Day 🥹❤️...
I won't lie I didn't even realize it was today until I saw a lot of my friends who also have Cystic Fibrosis share it.
🫶When I noticed I joked around with my mom and said that I was doing exactly what I should be doing today. I say this because I was on a phone with a disability lawyer for AN HOUR legit. I am determined now to contact the Cystic Fibrosis Foundation Compass Lawyer that has been highly recommended. I was a nervous wreck and just wanted the call to be done with.
The fact that I have to hear that I could possibly not qualify because my lung function is not yet at 50%. Its crazy that the qualifications want you to be that low. I am trying really hard to get my lung function up a lot more. Everything I described about my swallowing issues, etc it seems to not be even considered because it is NOT related directly to my CF.
😭I hate that I even have to try to apply for disability. Many people have told me for MONTHS to do so but didn't want to feel like I truly needed to. I don't like having to admit that I truly can't work more than Part Time at least for a good job but at this moment really should be getting a remote job as my swallowing issues are not getting better (choking on a lot of food), waiting for GI appointment and now my mucus build up has gone more so making an appointment for my pulmonomogist.
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