#cvidlife

Infusions back on track! Biopsy done & one day at a time! #scig #cvid #cvidlife #mycvidlife #onedayatatime #infusion https://www.instagram.com/p/B3D_ejFgg1x/?igshid=11bk1s5v37x76

#cvid #cvidlife #donateplasma #donateplasmasavelives #spoonie #spoonielife #glild https://www.instagram.com/p/B2NzEUmgY6B/?igshid=1gsor1y066mup

Saw this today and it’s so true!! I had a conversation with someone over service animals. The basis was over how businesses need to start policing people better with them in public places. We went back & forth for awhile. I said some illnesses are obvious but those of us without a visible illness are the ones will get scrutinized & discriminated against and the ones who are stopped by the public questioning us. I explained I think we need to come up with something where service animals are required to be signed off by a medical professional like a handicap placard. I know the Ada laws but something needs to be changed to stop those who really are just taking Fido everywhere to those that need the support of an animal. Make it harder to weed out the fakes... I also see it from the animal lover side in that everyone should be allowed to bring their well behaved pets with them. They are becoming our children too. Why can’t we bring our puppies everywhere I mean they don’t cough & sneeze and get me sick 🤣 I don’t know maybe I’m rambling and that’s okay because I can see it from many angles and just know as society changes we need to make changes too. #cvid #cvidlife #adalaw #servicedog #serviceanimal #invisiblelness #fightforwhatyoubelievein #piawareness #donateplasma #speakup #serviceanimals https://www.instagram.com/p/B1vS6tmAGJu/?igshid=1opz63x4l4i71

So true #cvid #cvidlife #zebrastrong #zebrawarrior #spoonie #spoonielife #spoonielove #spooniesupport #piawareness https://www.instagram.com/p/B1cP7qIAmVb/?igshid=r5imuirf6dxx

My life with #cvid. Now I know why I make all this dark haunting music!#cvidawareness #cvidlife #dj #producer #dnb #dnbnation #raredisease #vampire (at Sin City) https://www.instagram.com/p/B1XCt2ZAn_J/?igshid=1u9p4cvhb0vqr

Infusion day!!! I’m so exhausted today. I had my mri today & lying there for an hour trying to think with the loud clunking noise even with ear plugs makes you think of so much random stuff. Well at least for me. I usually spend the time counting to 600 then restarting over again. I usually try and focus on the noise in the background that somewhat reminds me of a metronome. This is the first time I had one for the breast & I actually preferred lying on my stomach in the machine. The dye they injected made me want to jump out of my skin but I remembered she said it was only 7 minutes so there I went to my count to 600 again. I debated on another infusion & after a tearful moment with my nurse on the pain & frustration I have been feeling I decided to go ahead and get it done. I’ve been nauseous the past week so my body aches so 4 stand of needles made me thankful the nurse was doing them today or I would have probably passed. #infusionday #lostaspoon #sjogrens #spooniefamily #cvidlife #mycvidlife #cvidawareness https://www.instagram.com/p/B0rgENrAdpC/?igshid=1qb47u9a5ewms

Checking out a new doctor today to try and have one just in case for those emergency flare ups. Wearing my #zebra pin I got at the #idf2019nc #cvid #cvidlife #wegohealthawards #onedayatatime #advocateforyou #autoimmunedisease #spoonie https://www.instagram.com/p/B0g6qrqALNG/?igshid=5eb2ddtkmahq