Hospital appointments, doctors appointments, hair appointments, blood test appointments, I guess you get the picture.
So the last couple of weeks have been quite busy, but some good news is that Julie’s recent eye tests came back good, no general issues, no macular issues and no issues from the field test. So that is that for another year woohoo!!
Now got a great Rheumatologist for her, who has diagnosed her with more Antiphosphilipid Syndrome than SLE. So we are now trying to wean her off some of her medications, which has pleased my warrior immensely. Now waiting for a Neurologist appointment (yep she has finally gone mad….lol), to look into cerebral/central nervous system issues. Will have to bring up a piece I have just read where a medicine called Rituximab seems to have had some beneficial effects for this issue. That is the other thing a carer needs to be on top of, looking at available resources for information that may assist their warrior in having a better standard of care.
So what has this meant for me as a carer, lots of mileage to an from appointments, lots of “Admin bitch” time coordinating all of these appointments, which in itself can be a challenge. So now we have a bit of a quiet period (or we did until I used the “Q” word), to enable us to catch up on some things.
Julie is looking to make a doona (quilt for non Aussies) based on Lupus butterflies to auction for Lupus Awareness month, which in Oz is next month. I am looking to do some awareness raising by having a stall in our local shopping centre with banners, leaflets etc. Hopefully Julie will be able to come so that people can talk to a Warrior.
I am looking around the house to find stuff we don’t really need and putting them up on local Facebook sale sites for donations to the Lupus Foundation of Western Australia. (note to self, check with Julie before selling anything)