Our Dilemma

June 9, 2008 at 12:51 am

Hi Gabrielle

I think that it it is demoralising to have to “prove” all the time that we are “sick enough” to get IVIg, or Disability.

There is no question that it sure makes it tough to go to the doctor and say “hey – this feels better!” – you live in fear of losing something. You feel like you have to justify your IVIg each time…

From time to time it feels like the insurance guys are watching – “hey – look she gardened today; she must be better!” – it makes for a strange way to live.

The thing about the IVIg is that it has a short life, and you need a constant input of it to keep things at bay. As you said, when you don’t have it – you feel worse. As Julie said, you need to keep the list with you – then you can talk about the good and bad things – but more importantly, understand the trends over time.

Unfortunately, our systems recognise sickness, but don’t do so well on wellness.

Keep up your spirits, I hope that you are able to sort out your disability issues soon so it doesn’t affect your meds.