Always a fight

[marta]

Hey Freaky,

Not sure how it works in England, but in Canada all patients have a right to have access to their labwork. All I had to do was get permission from the doctor to get my lab results, and because I know they're busy folks, I ended up writing the letter giving me permission and just had them sign it. Since then (I always get my labwork done at the same place) I just go in the day after the labwork and get a copy of it. I have all my results charted in a spreadsheet and can definitely see associations with my bloodwork and when I have either felt bad/off or when I had a flare.

As an aside... I am squealing with delight as my typing just got interrupted by the hospital calling me to let me know that the Rituximab infussion is on. Woooo hooooo... I'll find out in a few minutes when I go in.

[JanW]

Good idea about Addenbrooks, Sam.

As one who also has a collaspsed nose, I will say that nothing in my health at the time would even have led me to have a seen a doctor, so there would have been nothing that could have been done about it. Once the bridge starts collapsing, it will pretty much fully collapse, and no one should fix it until your disease is well under control. It's a rare complication of a rare disease, so I wouldn't blame a doc too much. Honestly, at the Symposium the biggest gathering of people like this had maybe 25 in the room -- the vast majority of WG patients had normal noses.

[DEE]

Sam
I have all my bloods at local GP ,they send copies to the consultants that need them and give me a paper copy , Which wg consult explianed too me so i can ring to ask about anything or incase he does not recieve them
I had to change GP awhile back I kept telling him something was wrong he kept telling me to try and lose weight and exercise more He missed the fact i was in the early stage of a major flare
So took Sangye s advice ask everything stand up for youself if you know things are not right and say if changes are not right for you
Hope you get sorted at Addenbrook takecare of you DEEx

[drz]

Hey Freaky,

Not sure how it works in England, but in Canada all patients have a right to have access to their labwork. All I had to do was get permission from the doctor to get my lab results, and because I know they're busy folks, I ended up writing the letter giving me permission and just had them sign it. Since then (I always get my labwork done at the same place) I just go in the day after the labwork and get a copy of it. I have all my results charted in a spreadsheet and can definitely see associations with my bloodwork and when I have either felt bad/off or when I had a flare.

As an aside... I am squealing with delight as my typing just got interrupted by the hospital calling me to let me know that the Rituximab infussion is on. Woooo hooooo... I'll find out in a few minutes when I go in.

Congrats. They wouldn't dare turn down a big celebrity.

[Sangye]

Sam, I think that's a great plan. You'll know if you need to find a different local doc.

Marta, hooray for getting rtx soon! Yeehaw!

[freakyschizogirl]

Thanks for all the replies guys, it has really put me in a positive empowered mood.

You know i've just realised i'm happier at work at the moment than i am at home, i think its because at work i have a sense of purpose and things there are well regimented and "safe". I have a good routine there...

[chrisTIn@]

That's good news!
You go, Freaky!

[drz]

Thanks for all the replies guys, it has really put me in a positive empowered mood.

You know i've just realised i'm happier at work at the moment than i am at home, i think its because at work i have a sense of purpose and things there are well regimented and "safe". I have a good routine there...

See, already are getting better! Keep it up, girl

It is nice that work feels safe for you.
A comfortable routine is very helpful.

[Sangye]

That's good to hear, Sam.

[freakyschizogirl]

Still up today, 2 days in a row! Do i get a gold star now??