you know what? I am sick of this
rebecca has a check up at sue's clinic on the 3rd june , sue told me in november (whilst on the 2 week rehab course) that she would organise an appointment with her podiatrist on the tuesday before (2nd june)
well I have sent 2 faxes and phoned about a million times and they still dont know what is going on
no appointment has been made, so I am told to bleep sue, no answer
to top it all off I had a phone call from the rheumys today to say I have too many people coming down in june (myself, my mum to help me and my 3 kids - 5, 3 (rebecca) and 1) so I have to leave some home
what? I phoned them again and explained I cant leave any kids with their dad cause he has suspected narcolepsy ( I have to arrange extra care for him whilst I am gone) so I obviously have to take the other 2 with me, I have EDS and mobility issues so I need my mum to help, plus we have no other people that can help
she had to phone the hotel and that gy is gonna have tophone his manager then they will phone rheumy who will then phone me back
she said she didn't think it would be a problem. Thats when I asked her about whether the podiatry appt had been made yet. and she had no idea then told me to bleep sue
would I be better sending sue a letter now? I am sick of phoning every day.
please help me.
we have already booked the tickets for going down on the 1st june - so we stay night at hotel for appt with podiatrist on the 2nd, stay another night for main appt with sue, then stay that night to avoid having to drag our bags to the appts. leave on the 4th. This is what happened in november.
I have also booked 2 private appts with prof G for myself and my 5 year old on the 2nd june in the afternoon so I need to know when the podiatry appt will be cause they cant overlap.
If the poidatry can only do afternoon what do I do??#?
Mandy - DX EDS III by prof G June 2009
mum to Rachel 9-DX EDS III by prof G June 2009
Rebecca, 6, DX EDS III nov 2008, GDD, selective mutism, PDA
Charlotte 3- EDS III DX 2010
Louie 2- showing signs
Also carer to my husband who has narcolepsy + cataplexy