I KNOW i need to change doctors

Another bummer came the other day... DisabilitiesSA has dropped me as a client (I'd previously been told they'd take me on due to all my medical issues and the support Im needing). I got a letter saying it was removing me as a client as they cant help me with transport or organising paperwork (cause of my Aspergers and CFS/ME.. things build up), there was no mention of the other areas in which I really could do with some support.

There was other support areas in which I was enquiring help in too but anyway.. Im no longer a client there. I fit no where in any of the support services (I dont quality for mental health support services or anything).

Hugs Tania, we have so many needs medically and general practioners are either unlearned or don't want to know. I have had similar issues and in my experience, lists have been browsed at only to be handed back to me. You have to I guess weigh this doctors worth against previous ones and then decide whether you want to change. I wish I could offer advice on the disabilities but I really don't knoow Australia's rules you will know better, it is cchanging over here too at the moment. Is there a citizens advice place that could advise you on this. I hate that we have all these strains on top of this damn illness. I know I can't tolerate stress and my heart goes out to you. Thanks for your reply on my blog also, you were absolutely right I talked it over yesterday and graded and reversal was the theme. I pointed out the dangers of GET and I was told not in so many words as to stop being silly. Also that I would find funding very hard to get int he future if I dropped out. Big hugs Tan, keep strong in spirits over there ~Sleepy

Sorry to hear your Boyfriend & Dr are being difficult. I guess many Dr's don't want patients who have multiple problems & hard to treat conditions.

I ALWAYS take a short list of things /questions I want to address to the Dr. But I never give the list to the Dr, I just refer to my brief notes to ensure I don't forget what I want to ask. I DO try to keep it fairly brief at each appointment though.

My Dr always asks me to book the last appmnt of the day so that if we run overtime, it doesn't affect other patients.

I guess, like Sleepy said, you have to weigh up whether you want to stick with this Dr or start afresh with someone else.

I dread the idea of starting afresh as I find it too stressful & exhausting repeating my health history (& the typed up version is over 30 pages). My typed summary has all the main 'events' , procedures & tests typed in bold so I can find them quickly, when I want to refer to them).

My current Dr (who has a 10 yr history with me) at least knows what I've tried & what my views on drugs are. He also knows I have financial & energy limitations.

I really sympathise with your situation.

The only suggestion I would make is don't try to resolve too many issues at once. Try to address the most important ones first. I know that is difficult in your case as you have many issues & REALLY need someone to help.

What you need is someone to Help you do what YOU want them to do, NOT Do what THEY think you should do.

Your boyfriend's suggestion of a list would be helpful, though. But make that list at home, prioritise the issues & use that list to organise your own mind & tasks - don't take the whole list to the Dr's.

I always find that putting it down on paper (or computer) helps ease the weight & relieves the stress.

The doctor should be happy you bring a list and only go over one to three issues. that's what they tell you to do on those lists of how to do the patient role anyway, make a list. i'd say you need a new doctor, but then again i don't know the whole story and i and almost everyone else needs a new doctor, since the ones competent to help us are so very rare.

your boyfriend needs to get off your back on this. it's unreasonable, so maybe it's just an awkward expression of his frustration at your doctor and or the disease.

anyway, this is why i say "CFS" really just stands for Cluster-Fuck Syndrome persuant to the disease ME.

Tania,
That is really an awful place to be in when you fall through the cracks, I'm sorry that's happening to you. I am fortunate to have a PCP who schedules one-hour appointments normally--not just for me--but that's an unusual situation I think. Still though, she talks a lot and I often find I only get 1 or 2 things addressed. I've learned to just automatically schedule another appointment before I leave, even if I have nothing immediate or specific, just as a way to play catch-up.

I agree with everyone else that a list is sometimes the best, and only, way to go. But it sounds like your doctor is hitting a wall of his own and I've had that happen with some very good people; I think it's inevitable unless you're working with someone with specific training for ME/CFS.

One perk of the disability process for me was the letter my PCP wrote which is a relatively short (but excellent) history of my symptoms and changes over the years. It would be nice if you could get something like that written or maybe your boyfriend would help you create one of your own.

anyway, this is why i say "CFS" really just stands for Cluster-Fuck Syndrome persuant to the disease ME.

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May I use this? It's pure gold!

Victoria;bt4517 said:

I dread the idea of starting afresh as I find it too stressful & exhausting repeating my health history (& the typed up version is over 30 pages). My typed summary has all the main 'events' , procedures & tests typed in bold so I can find them quickly, when I want to refer to them).

Click to expand...

Nods yeah.. that's my issue too, dread of changing doctors and getting them aware of all the important medical history and things. It takes so much time and energy to educate any doctor about me.