Have got an appointment tomorrow at Guys to see Dr Aslam she is Professor Davies Registrar. I have seen her once before in March and like others who go to the support group at Guys my main complaint is the length of time between one appointment and another.
Here are my notes I am taking to regarding the things I want to discuss with her but it is rather lengthy so hope will be able to say it all. I always make notes before I go for any appointment in case I get an attack of fibro fog and can't speak.
Am giving ansers as given as well as have now seen doc but not docotr Aslam a new registrar Sarah Medley
Q. Clonazepan Last saw you in March and was given clonazepan quarter then half, unable to tolerate half went back to quarter but didn't do much so stopped it. Then am left till now before I see you again
A Could ask my doctor to write to say this and they could suggest something else.
Q Pain Clinic am not willing to go to this at St Thomas's have been to many courses and can't see what I would achieve having had bad experience with Dr Duncan,
A Dr Medley had no knowledge of this complaint iof mine but agreed it would bot be suitable for me.
Q fibro pain clinic Is there going ot be a dedicated fibro pain course? none planned at present but planting a seed.
Q plantar fasciitus and TMJ Have had plantar fasciitus since April, had physio and acupuncture which had bad reaction to leading to TMJ pain. Not sleeping, pain not controlled and fatigued. Taking paracetemol, acupan, st johns wort, valerian. What else can you offer?
A Have tried most things available try going back to cymbalta to see if it helps with sleep.
Q vitamin D can I try vitamin D for pain relief or B12?
A have to have blood test and then it can be given if deficient. Given blood test at hospital wait 3 weeks for result.
Q NHS and Private as it is so long between appointments can you go to Prof Davies private clinic as well in between appointments (am hoping Benenden will pay for this)?
A Yes you can do whatever you like to help alleviate your symptoms.
Q DLA have received DLA but only for two years although was given it for three before. Is it possible to get a letter in support of claim to see if can get it for longer without having to refill form?
A Yes will send you a letter to whom it may concern. Have recieved this letter aand will forward it to #DLA to see if can get it extended or no.
Showing posts with label notebook. Show all posts
Showing posts with label notebook. Show all posts
Monday, 7 December 2009
Monday, 20 April 2009
Talking to Medics 3 -It's All In Your Head Innit
It was with some trepidation that I attended a meeting with a new pain consultant now at St Thomas'. Arrived half hour early which was a blessing as I was confronted with an 8 page form to fill out with medical history how do you feel today how did you get it all that kind of stuff.
Luckily I had my trusty notebook as well as a printed medical history form- prepared by me- as well as a medical history report I had asked for from my GP.
It is so dperessing filling out these forms there is a picture of a body and you have to show where it hurts where it hurts the most, what makes it worse, what makes it better that kind of thing.
Wsn't it good I was early receptioinst said it should have benn sent to me and Iwasn't allowed to go in until I had filled it in. Consultants are Gods you know.
Well I did feel a bit low having written all this depressing stuff cos normally I keep my pain somewhere over my right shoulder so all this writng about it flooded it back into me poor body so was feeling bit tearful and then was called ito yer man.
To say that we didn't take to each other was an understatement he started asking me about acupan- which I don't take anymore- he was looking it up in a medical dictionary. When I tried to tell him about it he did the classic talk to the hand thing that I would bash my kids for if they did it to me and said"I can't listen and read". Why ask a question then??
He then started asking me what I knew about fibro and what trauma had I had in the past that might have caused it because it must have benn something because it is pyschosomatic you know. (Insert Scream Here)
Well feelin fragile I started to cry and he said I will stop asking questions but the psychologists on the course won't. He also claimed he had never heard of Prof Davies why was he doing fivbromyalgia when he was a sports specialist- what people with fibro would be doing sports??
I wonder does Prof Davies know he is referring his patients to a fellow specialist who doesn't think much of him and also thinks that fibro will go away if you get rid of all your demons from the past.
Thankfully he informed me he is not part of the team running the course as frankly I would not go on it in a million years if I thought he was.
Now what to do about this should I complain about him, talk to fibro support group at hospital or maybe my arthritis group of ladies or maybe everyone. Have been left pretty shaken by this and had to have a good cry when I came out which was bit odd for the poor lady taking pictures from the top of a London Sightseeing Bus.
At least it has left me in the right frame of mind to tackle the disability form. Have another meeting about the course next Friday which incidentally is four weeks and not the two weeks i was told it was by the fibro consultant.
Luckily I had my trusty notebook as well as a printed medical history form- prepared by me- as well as a medical history report I had asked for from my GP.
It is so dperessing filling out these forms there is a picture of a body and you have to show where it hurts where it hurts the most, what makes it worse, what makes it better that kind of thing.
Wsn't it good I was early receptioinst said it should have benn sent to me and Iwasn't allowed to go in until I had filled it in. Consultants are Gods you know.
Well I did feel a bit low having written all this depressing stuff cos normally I keep my pain somewhere over my right shoulder so all this writng about it flooded it back into me poor body so was feeling bit tearful and then was called ito yer man.
To say that we didn't take to each other was an understatement he started asking me about acupan- which I don't take anymore- he was looking it up in a medical dictionary. When I tried to tell him about it he did the classic talk to the hand thing that I would bash my kids for if they did it to me and said"I can't listen and read". Why ask a question then??
He then started asking me what I knew about fibro and what trauma had I had in the past that might have caused it because it must have benn something because it is pyschosomatic you know. (Insert Scream Here)
Well feelin fragile I started to cry and he said I will stop asking questions but the psychologists on the course won't. He also claimed he had never heard of Prof Davies why was he doing fivbromyalgia when he was a sports specialist- what people with fibro would be doing sports??
I wonder does Prof Davies know he is referring his patients to a fellow specialist who doesn't think much of him and also thinks that fibro will go away if you get rid of all your demons from the past.
Thankfully he informed me he is not part of the team running the course as frankly I would not go on it in a million years if I thought he was.
Now what to do about this should I complain about him, talk to fibro support group at hospital or maybe my arthritis group of ladies or maybe everyone. Have been left pretty shaken by this and had to have a good cry when I came out which was bit odd for the poor lady taking pictures from the top of a London Sightseeing Bus.
At least it has left me in the right frame of mind to tackle the disability form. Have another meeting about the course next Friday which incidentally is four weeks and not the two weeks i was told it was by the fibro consultant.
Friday, 10 April 2009
CFIDS onlibe support topic- fibrofog
Our topic for this month is fibrofog or cognitive disfunction. Although I have also seen it recently called being thought disordered.
I used to be very nuch bothered by this, that is to say I still get the brainfog but try not to get so stressed any more about it.
In the past I have found myself struck completely dumb when I had a meeting with a recalcitrant consultant and coulod not speak at all as he was so imtimidating. The end result was that he sent me for the test that I was hoping for so no harm done except to increase my awareness of the problems it can cause. I now take to any consultation or meeting notes about my medical history including family history, any medication I am taking, last weeks diary as well as the questions I want to be answered. If I am feeling particularly vulnerable I would take someone else with me.
When I was having many stressful meetings regarding my work complaint I used to have written in my notebook the following: I need a break
I need time to answer
Stop and wait please for me to order my thoughts
I would then point to the relevant statement for my union rep to say. It worked well for me at te time to feel that I had some control over the situation.
I have now become the notebook queen and always carry a pretty notebook to help me keep track of what Iam doing my goals and targets. I also use my mobile phone as a notebook and either create a note to myself, use the calender to set reminders for myself or make a text in draft form for something I have to remember.
Despite this I have still missed a hydrotherapy apointment this week and rang to apologise on Wednesday am for missing the apponitment that morning but it was actually Tuesday morning.
I also find it very worrying when people tell me I have said things without realising it such as saying in a shop that I had a "sexual problem" when I mean't to say I had a medical problem to try to explain my getting mixed up. So although it is funny now it is worrying and makes me feel I lack control. Will end now as worrying am getting too long thanks
Here is an article written by Bruce Campbell about this subject:
http://www.cfidsselfhelp.org/library/lifting-fog-treating-cognitive-problems
I used to be very nuch bothered by this, that is to say I still get the brainfog but try not to get so stressed any more about it.
In the past I have found myself struck completely dumb when I had a meeting with a recalcitrant consultant and coulod not speak at all as he was so imtimidating. The end result was that he sent me for the test that I was hoping for so no harm done except to increase my awareness of the problems it can cause. I now take to any consultation or meeting notes about my medical history including family history, any medication I am taking, last weeks diary as well as the questions I want to be answered. If I am feeling particularly vulnerable I would take someone else with me.
When I was having many stressful meetings regarding my work complaint I used to have written in my notebook the following: I need a break
I need time to answer
Stop and wait please for me to order my thoughts
I would then point to the relevant statement for my union rep to say. It worked well for me at te time to feel that I had some control over the situation.
I have now become the notebook queen and always carry a pretty notebook to help me keep track of what Iam doing my goals and targets. I also use my mobile phone as a notebook and either create a note to myself, use the calender to set reminders for myself or make a text in draft form for something I have to remember.
Despite this I have still missed a hydrotherapy apointment this week and rang to apologise on Wednesday am for missing the apponitment that morning but it was actually Tuesday morning.
I also find it very worrying when people tell me I have said things without realising it such as saying in a shop that I had a "sexual problem" when I mean't to say I had a medical problem to try to explain my getting mixed up. So although it is funny now it is worrying and makes me feel I lack control. Will end now as worrying am getting too long thanks
Here is an article written by Bruce Campbell about this subject:
http://www.cfidsselfhelp.org/library/lifting-fog-treating-cognitive-problems
Thursday, 19 March 2009
Talking To Medics -2
Had an appointment with my doctor and as usual had my notebook ready with the points I wanted to talk about but I think I had just too many things to discuss so in the end realised that my main reason for going was not touched upon which was silly really.
So... learning all the time next time I will have less things to talk about by going more often or having telephone appointment in between, and prioritise my problems so that I at least get the main item off my chest.
To cap it all got letter today from consultant with details of new medication so will have to make new appointement anyway- oh dear.
When you have limited energy you just need to be super effecient so as not to waste any spoons.
Do you know the spoon story? Will do another post about it soon.
What it was was I meant to ask doctor to examine my hips as they are very sore these days and she had said she would send me for an xray. So that was my reason for going and of course can't have them examined over the phone- silly me.
I hope your doctor offers telephone appointments too as they are a real help when you are exhausted and there is no comfort in doctors waiting rooms.
Will have to make another appointment.
So... learning all the time next time I will have less things to talk about by going more often or having telephone appointment in between, and prioritise my problems so that I at least get the main item off my chest.
To cap it all got letter today from consultant with details of new medication so will have to make new appointement anyway- oh dear.
When you have limited energy you just need to be super effecient so as not to waste any spoons.
Do you know the spoon story? Will do another post about it soon.
What it was was I meant to ask doctor to examine my hips as they are very sore these days and she had said she would send me for an xray. So that was my reason for going and of course can't have them examined over the phone- silly me.
I hope your doctor offers telephone appointments too as they are a real help when you are exhausted and there is no comfort in doctors waiting rooms.
Will have to make another appointment.
Tuesday, 10 March 2009
Talking to Medics
Yesterday I had an appointment with a new consultant at Guys Hospital. I had been seeing Professor Davies who is the leading expert in Fibromyalgia ie the only one that seems interested. I am noe seeing his Registrar Dr Aslam. So after a mix up with my appointment which meant I was a month behind I arrived with some trepidation as always when seeing someone new. Will they understand will they give me time to answer will they listen?
The only way I can deal with appointments is to be as prepared as I can be with my trusty notebook in hand with a short overview of where I am now how I feel, what my symptoms are what medication I am taking together with a typed history of my condition with medication tried together with a bit of family hostory in case asked for this to refer to if needed. Ideally it would have been useful to have a diary of my last week but I just find that too depressing to write so I didn't have it with me. Mu history of conditon wasn't quite up yo date but it was good enough to answer a querie that the doc had about an effect a previous medication had had, will update it soon.
I like to have it all written down for two reasons so I don't forget a question that is worrying me and also in case I get a fibrofog moment which did happen to me before and can't say properly what is wrong then at least I can point feebly at the relevant question. If you do have a lot of fibro fog I would advise taking someone with you that knows you well to help out if you get stuck.
All in all it was a good meeting am being snet on a residentail pain management course depite my having tried many courses before and some new medication which I have to try with quarter tablet then half then three quarters to whole so I don't get too many side effects. Can't remember name of it- should have written it down in trusty notebook= but know have not heard of it so probably experiwmntal for us guinea pigs oink oink
The only way I can deal with appointments is to be as prepared as I can be with my trusty notebook in hand with a short overview of where I am now how I feel, what my symptoms are what medication I am taking together with a typed history of my condition with medication tried together with a bit of family hostory in case asked for this to refer to if needed. Ideally it would have been useful to have a diary of my last week but I just find that too depressing to write so I didn't have it with me. Mu history of conditon wasn't quite up yo date but it was good enough to answer a querie that the doc had about an effect a previous medication had had, will update it soon.
I like to have it all written down for two reasons so I don't forget a question that is worrying me and also in case I get a fibrofog moment which did happen to me before and can't say properly what is wrong then at least I can point feebly at the relevant question. If you do have a lot of fibro fog I would advise taking someone with you that knows you well to help out if you get stuck.
All in all it was a good meeting am being snet on a residentail pain management course depite my having tried many courses before and some new medication which I have to try with quarter tablet then half then three quarters to whole so I don't get too many side effects. Can't remember name of it- should have written it down in trusty notebook= but know have not heard of it so probably experiwmntal for us guinea pigs oink oink
Subscribe to:
Posts (Atom)
