Medical Appointment

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.

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

Dreaded DLA Form Part 2

Have had two reminders for this form and as my weekend wasn't so good health wise and also following a meeting with a medic on Thursday that didn't go to well , I thoguht it's time to give it another go.
Wasn't able to get up until 2pm today and that was only with Tom coming and saying come on Mum its a lovely day so up I got and made a good start on the form have completed lots of the pages now and need to just get it copied and send it off and hope for the best. I think my problem is that it can be so important- will they let me keep the mobility element or take it away or the care element and then if they do what do we do for transport?
But.. I need to just stop catastrophisng about it get it done in the post and forget about it.

I will feel very glad when it is don it just makes you feel so low when you have to keep thinking about how bad you are but having had to complete that other form for the pain consultant on the hop last Thursday I just thoguht if I can do that so quickly I can do this one as well. So although I really was distressed by that meeting it maybe has done me a favour because it has spurred me on to do this one.

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.

The Dreaded Disability Living Allowance Form

Ok I've had it a month now-had a reminder to send and still can't bring myself to do it. I keep telling myself I'm researching it so have rang a few helplines for advice on what to write. Have printed off guide from http://www.benefitsandwork.co.uk/ and filled in my name and bank details and then.....

I guess its just it makes you think about how bad you really feel, how little you can do and the outcome could still be they take it away from you and you have to fight to get it back.

I know I said I had become decisive in my 25 things but this one I just cannot get to grips with and now I can't find a black pen so.. can't do it today either. Am going away today for a few days to Hever in Kent so maybe next Monday? Will let you know when I have completed it.