Not a CF tribe member, but an immune deficiency one ❤️🩹 (CVID, without my biweekly subQ infusions my immunoglobulins are “undetectable” I basically have none). Probably the biggest rule I’ve broken is not knowingly being around sick people (in keeping with your theme 😉). It gets broken when the grandkids are involved, (although I do wear my mask, those pesky germs can be quite inventive). Thankfully my infusions kept me safe and I didn’t catch their snotty nosed buggery coughing sneezing illness). But I did purposely restrict the amt of cuddling (which is heart wrenching 😭). And don’t even get me started on the people who take issue with those of us who do wear masks as needed. Or the people who use excessive amounts of parenthesis (🤣) 😘
I have doctors orders breakthrough pain meds. I follow the plan but sometimes it doesn’t touch the pain. Rules are broken with a caffeinated alcohol chaser. Nerves like alcohol.
I used to be on a medication called Avonex for my MS. It is an injectable interferon beta 1a. I gave myself intramuscular injections once a week. About 6 hours after injection, I would get major flu like side effects…horrible! Sometimes I would skip it if I had something that I needed to do because the side effects were so bad. We moved 5 years ago and I took myself off of it so I could get through the move which then led to the worst relapse I ever had, the one when I thought I would never be able to dance again. Ugh! I changed medication after that.
Plez just let me yell “face diaper” at people… (and at myself in the mirror when I am wearing one 😆) it gives my life meaning 😂
Not a CF tribe member, but an immune deficiency one ❤️🩹 (CVID, without my biweekly subQ infusions my immunoglobulins are “undetectable” I basically have none). Probably the biggest rule I’ve broken is not knowingly being around sick people (in keeping with your theme 😉). It gets broken when the grandkids are involved, (although I do wear my mask, those pesky germs can be quite inventive). Thankfully my infusions kept me safe and I didn’t catch their snotty nosed buggery coughing sneezing illness). But I did purposely restrict the amt of cuddling (which is heart wrenching 😭). And don’t even get me started on the people who take issue with those of us who do wear masks as needed. Or the people who use excessive amounts of parenthesis (🤣) 😘
I have doctors orders breakthrough pain meds. I follow the plan but sometimes it doesn’t touch the pain. Rules are broken with a caffeinated alcohol chaser. Nerves like alcohol.
I used to be on a medication called Avonex for my MS. It is an injectable interferon beta 1a. I gave myself intramuscular injections once a week. About 6 hours after injection, I would get major flu like side effects…horrible! Sometimes I would skip it if I had something that I needed to do because the side effects were so bad. We moved 5 years ago and I took myself off of it so I could get through the move which then led to the worst relapse I ever had, the one when I thought I would never be able to dance again. Ugh! I changed medication after that.
Thank you for the education. Has anyone offered to make you custom designed face masks/diapers? 😊♥️💚🖤