“The friends and family who care for someone with a rare disease really become experts and the ‘voice of care,'” said Nicole Boice, the founder and CEO of Global Genes. Ninety-four percent become involved in care communication and advocacy work. Eighty-nine percent educate healthcare professionals about their care recipient’s condition, and 84 percent help with medical or nursing tasks. Caring for those with a rare disease comes with a lot of stresses and strains. Seventy-four percent of caregivers report struggling with a sense of loss about what their care recipient’s life could have been. And 67 percent report emotional stress — twice as high as that for those caring for people with other conditions.”
Taken from an interesting article here. CF represents 9% of those rare diseases.
Today we picked up his IV drugs and he had his port accessed again; a small needle called a gripper is pushed into his port, which the drugs will go through. This needle will stay in place for the whole course (hopefully just two weeks, depending on how he responds).
Silver linings: at least we are home and not in hospital this time; he is sick, but not too sick; and not having to wait for a long-line thanks to the port is brilliant.
Need to keep thinking of these positives. I miss Isaac being well. I miss Jayne, I have been thinking about her a lot lately. I admit I’m struggling a little more than usual right now... the last six months have been tough and I’m not sure my muddled mind has fully caught up with everything. Working full time and raising three kids doesn’t allow a lot of time for contemplation. I’ll be OK. What I’d really like, is when friends ask how Isaac is, is to be able to say ‘He’s doing fine. Thank you for asking’. It feels like its been a LONG time since I’ve been able to do that. Things have got to get better.
Picking up two weeks of IV drugs today. I bought my huge (and really damn cool) old lady shopper, thinking that would fit everything in. So wrong;
BD, 1966.
Mama put my guns in the ground
I can't shoot them anymore
That cold black cloud is comin' down
Feels like I'm knockin' on heaven's door.
