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 medical history. Show all posts
Showing posts with label medical history. Show all posts
Monday, 7 December 2009
Wednesday, 13 May 2009
Dreaded DLA Form Part 3
Well it is finally done its in the post and whatever happens now happens. I know I have sent it off very late but I am hoping with all the supporting evidence I have sent it will be sucessful without them needing more evidence from my health professionals.
Have sent with it prescription form, letters from DH, consultants, ill health retirement letters, statement from myself as well as the 39 page form what more could they want?
I really have a mental block about doing this form and just put it off and put it off until it is like a weight hanging over me. I think it is becasue the outcome is so important if I lose it it means - no car, no disabled cab, no access to taxis when I can't drive but if that does happen then we will handle it. Should use CBT to not catastrophise about outcomes so must STOP worrying about it now.
It is such a lovely release that it is done phew
Have sent with it prescription form, letters from DH, consultants, ill health retirement letters, statement from myself as well as the 39 page form what more could they want?
I really have a mental block about doing this form and just put it off and put it off until it is like a weight hanging over me. I think it is becasue the outcome is so important if I lose it it means - no car, no disabled cab, no access to taxis when I can't drive but if that does happen then we will handle it. Should use CBT to not catastrophise about outcomes so must STOP worrying about it now.
It is such a lovely release that it is done phew
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.
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.
Monday, 16 March 2009
Dreaded DLA Form
I decided that today is the day to tackle this form it is 39 pages long so have broken it down to pages in my trusty notebook.
It took me some time to assemble all my paperwork together so I have:
1 current prescription forms saves writing in what meds you are taking
2 medical history document-This is my own document with family history, own medical history 3 medications tried, treatements tried etc. I try to update this and keep it on my computer but it needed updating before I could use it.
4 copies of old DLA applications- so I can see what I put before not that that means if it worked that time it will this.
5 Any Medical reports to send up the more info the better
6 Letters from people that care for you- my husband, daughter and friend
7 Guide to Disabilty Living Allowancw frim Bebefits and Work website- printed off- this is a page by page guide and is invaluable for helping complete this horror of a form.
So am ready now and have completed 13 pages- admitedly these are mostly the easiest ones- like whats your name and bank details but that is a third of the way along right.
Have had a break during this and sat in my summer house for a while with the paper, what a beautiful sunny day it has been today.
Am going to pack up now and tackle some more of it tomorrow. But am I also going to reward myself with buying some bedding plants for my garden. This form can really make you feel down as you have to talk about suffering and pain and all the symptoms you have- words I try not to use about myself too much. Am exhausted from it but it has been productive.
It took me some time to assemble all my paperwork together so I have:
1 current prescription forms saves writing in what meds you are taking
2 medical history document-This is my own document with family history, own medical history 3 medications tried, treatements tried etc. I try to update this and keep it on my computer but it needed updating before I could use it.
4 copies of old DLA applications- so I can see what I put before not that that means if it worked that time it will this.
5 Any Medical reports to send up the more info the better
6 Letters from people that care for you- my husband, daughter and friend
7 Guide to Disabilty Living Allowancw frim Bebefits and Work website- printed off- this is a page by page guide and is invaluable for helping complete this horror of a form.
So am ready now and have completed 13 pages- admitedly these are mostly the easiest ones- like whats your name and bank details but that is a third of the way along right.
Have had a break during this and sat in my summer house for a while with the paper, what a beautiful sunny day it has been today.
Am going to pack up now and tackle some more of it tomorrow. But am I also going to reward myself with buying some bedding plants for my garden. This form can really make you feel down as you have to talk about suffering and pain and all the symptoms you have- words I try not to use about myself too much. Am exhausted from it but it has been productive.
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
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