28 July 2010

funny phonecalls

i had been putting off calling the genetics professor for a few weeks now. two weeks ago his secretary informed me a letter was in the post dealing with my referral. however i knew a phonecall was inevitable so i called her today to see what was going on.

she took my number and was going to call back with the info.

ring,ring,ring,ring, i picked the phone up thinking it was her, however it was the first neuros secretary calling to ask me whether i would like to take part in a health weekend. the jist of it was, junior docs are taking exams in two weeks time they would like to question me on my condition and see whether they can name the condition by the symptoms i describe. like name that tune, only with bodies!!! i said that i would think about it so shes sending me some bumph. the only reason i would consider taking part would be to spread the word on ehlers danlos/pots. so others wont have to suffer like i and many others do. mmmm its a toughy. let the freak show commence!!!

then the genetics secretary phoned, i have to speak to a counsellor before they will test me for vascular eds, why? i just want to get it over and done with, no ones going to change my mind. i think if i was fit and healthy then possibly i wouldnt want to know, but im not.


Coffeecup said...

Hi Em, not sure if I'd like to be questioned by a bunch of junior docs, but like you say, it may educate them and help them diagnose symptoms in future patients earlier. Do it only if you're feeling up to maybe?

If they're offering a counsellor can they come and see you at home? In my opinion there ought to more support for all of these tests when the results can be upsetting or life changing, but like you say, you just need to know what you're dealing with. Hospitals generally treat you like a lump of meat. There's no additional help and no one to talk to and look after your emotional health. Maybe not such a bad idea to have this kind of service?

Rusty Hoe said...

Ahhh junior docs. They need all the help they can get. Education is always good but you have to be happy to do it.

The psych in me says to take up the counselling offer. I've been the bearer of bad news and had to help pick up the pieces after. Often we don't realise just what our reactions will be to either good or bad news and it can help you prepare before, rather than running to catch up after.
It's actually a sign of a good practitioner that they have this in place. Lots of docs don't give a shit past the physical and really the emotional response to any medical news is just as important. Mind you I also get the just get it over with feelings to. Waiting is always way worse. Thinking of you :)

Achelois said...

I'd go for it on the juinor doctor front just to get to gawp at intelligent young men. I am afterall sad and middle aged though. Questioning is fine, just make sure if they are allowed to examine you and you want the best looking one to get brownie points make sure you say carefully its really important that you don't hurt me as I stretch, bend and dislocate very easily - wink wink. After the rough treatment at the hands of a neurologist the other day I remembered Professor G saying years ago now that it is important not to unnecessarily yank the joints of an EDSer as it can cause pain and distress. I'd gawp at the lovely young doctors in the name of education!

I think the counselling is just like a precautionary thing - to cover them. Because of the nature of vascular type EDS I guess. I would go for it Em, otherwise you will be like me and always wonder because of overlap symptoms versus hypermobility type. Its also probably because you have as yet no children. I think being offered it is reassuring and a breath of fresh air in a system like ours where so often we are treated as coffecup says like a lump of meat.

Whatever you decide on both decisions I have no doubt you will weigh up the pro's and cons with quiet deliberation. I have a tendancy to make snap decisions then get all stressed about the 'going' or the doing'.

fondest regards xoxoxo

Nechtan said...

Hi Em,

Personally I would tell them to get stuffed. Once they have finished all their tests and given you some proper answers then would be the time to be a mystery round in some junior doctor quiz. Actually the suggestion makes me quite angry.

I know your intentions are well meant but I don't think this would help spread the world. You have had enough to put up with without something like this. Just my own take on it but if you do decide to do it then I hope all goes well and you are the one to benefit from it.

All the best


Em said...

hi steph

i think if i was a heathly specimen then i would certainly think twice about going in for the test, but im not. i do a great job of blocking things out, and have done so for years. i think that is the way i will deal with the situation othwerwise i wouldnt cope. it may not be a very healthy way, its my way and its worked in the past. hope your doggies are well.xxx

hi michelle

im not the only one then, just do it! im sure this session will be a one off before the process starts. ive fixed my mind of going forward so there will be no stopping me. thanks. xxx

hi achelois

hope you and your daughter are as well as can be.

im so glad that i was non committal on the phone to the secretary regarding the health weekend. i usually agreed to anything then regret it later. i will read the info she sends and decide then. hopefully i will be able to go, you know how awful this condition can be and if i can place a seed into the docs brain then surely that would be a good thing. xxxxx

hi necthan

there wouldnt be any other reason for me too go other then making some drs aware of this condition. even if the back of there mind someday they will treat a patient like me and remember the name ehlers danlos, then i have done my job. other than that i wouldnt go.

hoping your ok. xxx