If I was a horse......: I would be shot!! I have... - LUPUS UK

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If I was a horse......

tjperfick profile image
12 Replies

I would be shot!!

I have managed to get an emergency apt at the hospital in about 10 days time. I have decided to make a list of everything ( and I mean everything ) that is flaring at the moment or has been over the last few months. Do you think that this is ok to do, or will they just roll their eyes and switrch off. I have done this because everytime I come out of a consultation I have always forgotten something!

Anybody got any other ideas on how to approach the appointment as I want to make the most of it because I have been feeling so rough for w few weeks now.

thanks

xx

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tjperfick profile image
tjperfick
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12 Replies
Queencara78 profile image
Queencara78

Take photo's of any visible symptoms and add notes and dates and print them off to take with you, this would hopefully give the specialist a better picture and trigger your memory to any other issues.

x

tjperfick profile image
tjperfick in reply to Queencara78

Got photo's and notes ( nearly 2 pages) Wish I had thought of this before, but need to get what I think are minor issues, but are turning into bigger problems now across. Rash and swelling is present nearly all the time and swelling is appearing all over ( chest, collarbone etc) so really need to get to the bottom of all this. I feel that my illness has changed since my first appt and am going to treat this as such if that makes sense.

xx

Maya23 profile image
Maya23

Yes definitely make a list (or a mind-map) and give the consultant a copy! I always do this now - and they seem to like it!

tjperfick profile image
tjperfick in reply to Maya23

thanksxx

I have never gone in with a list before - wasn't sure if they would like it. But always come out forgetting something that I needed to tell them.

Footygirl profile image
Footygirl

Hi

Yes make your list and how things affect you.

A tip I would give, if it helps. If you get flustered, anxious anything which could affect your presentation, confidence even, take the emotion out of it. Present it as if the symptoms etc are for a good friend who cannot speak for herself. Think about it. We all get a bit rattled on these occasions. Clear your thoughts, think about your list and advocate for the person who isn't able to.

Speak up about any proposed treatment, challenge anything the doctor does not explain and think of her/him as a partner in this venture. You both want the same result. Remember that some people who work with or about their specialty some times forget who they are addressing because of their knowledge.

I hope your appointment goes well and your doc is a good communicator.

I hope you are armed with more information than you attended with.

I have you on my calendar and will be thinking about you in the next two weeks

Do let us all know how you get on

Big hugs OOOOO

tjperfick profile image
tjperfick in reply to Footygirl

Thank you xx

I was started on aza but made me so sick even my rheumy nurse does not want me to take it any more, so need something else. Down to 12 mg steroid ( tapering 1 mg every week ) and this is the lowest I have been on for ages and my body is really feeling it, so need to make the most out of this appt.

Purpletop profile image
Purpletop

Make a list of everything but try to group the symptoms as it will make it easier for the doctor to absorb the information. For example:

- skin: rashes, bruising;

- abdomen: acute pain upper right hand side, random pain mid abdomen, acid reflux daily;

- neuro: intermittent muscle tremor in right hand, numbness in left foot during night, memory issues;

- circulation: dizziness on getting up from the chair, high blood pressure of x, cold feet.

You get the gist.

tjperfick profile image
tjperfick in reply to Purpletop

That is exactly what I have done - started at the top and worked my way down!!

xx

I remember saying something similar to my friends - or they said it to me - that I'd make great glue if I was a horse. Hope your appointment goes well. I understand the whole going blank thing when you're in the consultant's office.

misty14 profile image
misty14

Hi tyjerfick

Good luck for your appointment. Your preparations sound very good and if on the day you feel particularly I'll don't be afraid to show your list of symptoms to the Consultant. Let us know how you get on. X

tjperfick profile image
tjperfick

Thanks for all your kind comments, I will let you all know how I get on. Felt that I was being a bit of a hypochondriac going in with what looks like a varied and long list of symptoms. xx

Myfatlie profile image
Myfatlie

I think it is a great idea, lets them know exactly whats happening and you will feel better not having forgotten anything, good luck

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