The reason why I've said 'kind of' is due to the fact that I'm moving my care to a different hospital trust, so I've already communicated with Rheumatologist(s) before BUT I'm rather anxious as - like many of us - alongside my Lupus diagnosis, I have a few autoimmune conditions (a couple of rare ones) and the volume of my hospital notes including results are the equivalent of Barbara Cartland's entire bibliography! So, I've found that and more than likely due to a number of factors (hospital notes not arriving on time, outpatient emergencies, overbooked clinics), understandably, they don't have time to go through everything and then the patient is expected to provide Mastermind/University Challenge answers their questions. The only difference is that I won't have any team members to buzz in and respond on my behalf and a black leather armchair to sit on. I'm aware that not all consultants have the same bedside manner but I've found that I respond better to those that adopt a more Lorraine Kelly kind of style: personable, maintains eye contact, relaxed, calm and measured.
I would like to prepare for this appointment in such a way, that I can get the best out of my rheumatologist appointment - for not only myself but for the specialist as well. So, do you have any tips? For instance, I was thinking of bringing my laptop so I can access my hospital patient portal (recent MRI, CT, hospital letters) in the event that my notes are not sent over in time but I can imagine, this might be off-putting. Otherwise, I could bring my folder for any historic questions - it holds all of the letters that have not been migrated onto this portal. Although, again, the size of the folder, might frighten them off.
My main concern is the Mastermind/University Challenge questions. The quick-fire quiz. When I'm fatigued and feeling weak, it's a massive worry for me because when I'm unable to immediately recall the information they require, their response is 'not to worry' and they quickly move on to the next question and the next question and the next question. It is a worry because if I had enough time to line up my brain cells, I would be able to provide them with the important answer. I usually depart feeling frazzled, deflated, disappointed and invisible - if that makes sense. Hence, my laptop and/or folder suggestion.
I am panicking. It's like a final exam sort of panic! I've mentioned this before but it's just that I find it really difficult trying to not only be the patient, the carer (for myself) and the advocate, all at the same time.
Your pearls of wisdom would be greatly appreciated.
P.S My appointment is the first week of July, so I thought it would be best to start preparing a little bit at a time.