I enjoyed today. More precious moments. Clarz came for a ride with me on the Pony round to the Playground while her Mum went and bought brunch for us. Turned out that people we knew were there with their littlies and we played and talked and ate lunch from Urunga Bakery. Then I brought her home and met her Mum back here.
And then, as usual, I slept for the afternoon. I am aware of how fortunate I am to have these days.
Nonetheless, I have areas of my life which trouble me. One of the major ones is the sheer lack of follow up and follow through by the Medical and Social Welfare World. I am, in fact, a trifle horrified by the inadequacy of it.
“Evidence from our study, and other evidence, suggests that there is an urgent need to better support these patients who survive ARDS because they’re confronting some difficulties and unique challenges,” said Dr. Brown.
These are the conditions I had. The follow up – well – it has barely existed. I do not think this recovery needed to be as difficult nor as damaging as it has been.
Assistance in these areas would have altered things dramatically :
Assistance with each of these has been MINIMAL and often has only occurred in Crisis situations such as the last bleed and the cellulitis. I HAVE WAITED and waited till I am calmer and less afraid before choosing what action I would like to take. I have not wished to act from hysteria or the fuckyas.
That does not mean that the blue flame of outrage burns any less brightly.
I have posted these before but I want the significance to reach people. I have now read of or spoken to other people and what has happened to me regarding treatment and follow through is not at all uncommon. We are fortunate to live in Internet Times when isolation does not determine access to information and support – BUT FUCK THE SYSTEM
never did see a respiratory physician
never did get rehab
PART OF IZZY’S AUTOPSY
into the evening quietly
a glass of water