Appointment frustrations

I vowed to keep on top of our appointment progress with this blog and it is the one thing I always neglect to do - report back on appointments and progress. So here goes:

Yesterday was terribly frustrating because I was trying to chase the appointment with the Ped Optometrist to whom we were referred over a month ago. She was on holiday, had to decide where to see us, blah, blah, blah. I have spoken to her office, they were going to chase the referral, I followed up yesterday, they had nothing, I went up the street and faxed them a copy (at a cost of £1!). I thought seeing Professor Cone would be difficult and this would be the easy one.

They phoned me back yesterday to say that they weren't going to see us until after we had seen Professor Cone. This is nuts to me because it has already been recommended that we talk about contact lenses and he is only going to say the same thing, in over a month's time and we will have to go through the whole waiting for an appointment process all over again. She will get something to cover her eyes three months later than she should have.

They said I can go back to our original referring consultant and have her write an individual referral to the Optometrist. So I've drafted a letter which I shall post tomorrow. So crazy, I wish I didn't have to run around after people all the time. It is so time consuming and energy sapping.

Today's scheduled "Charlotte's eyes" activity is a call with Michael From Colorado who has Cone Rod Dystrophy and has offered to chat to me. I'm kind of looking forward to it but nervous at the same time. I want information but I hate the way it makes me feel afterwards. Sort of brings it back to the forefront of my mind. I fear that is what I have done to another internet friend about her condition. I'm also feeling a bit shy. I'll report back later about our call.