What questions should I ask the s.l.e. specialist on my next visit at the hospital in 2 weeks time?

[goingaroundthetwist]

I have elements of sle and sjogrens along with raynauds, I have "probable sle" - although I identify with almost all the symptoms. I've had 3 appointments thus far, the first two with a really nice doctor who did not specialise in sle, and the third with a very nice sle specialist. On each visit I have been dazed and confused, and after returning home, cannot fully remember what I've been told. The last appointment my husband accompanied me, but even with that we still were unable to comprehend everything being thrown at us. At the end of the appointment I was asked if I had any questions, I said no. What should I be asking? I am on methotrexate, prednisolone and hydroxychloroquine now. I've had symptoms for years but have dismissed this as just being my age or over work, and also attending GP and being effectively told that these things were in my head. I've been off work since February. This has been the worse time of my entire life, and that's saying something, I am now just trying to come to terms with dealing with my earlier expectations that I would get back to how I was before and have my strength back. It has been extremely uplifting reading everyone's comments and bloggs on this site.

[gertie]

Hi there, I think most people get diagnosed with 'probable' lupus because they just add up your blood work, symptoms and biopsy results, and the meds you are on are Lupus meds so that is a confirmed diagnosis really. I think you it is a good idea to keep a journal of your symptoms and how your meds are affecting you and discuss them with your rheumy because you have to fit everything in to a 'short time slot'. Also the best thing is to do a lot of research yourself and you can always come here and ask questions or event rant! I personally found it extremely difficult coming to terms with my illness, it took me years. I had a very busy life with a well paid job that I loved but when my symptoms got worse my employers where not very understanding, they saw my illness as a weakness and because I never complained, looked well and just got on with things it was held against me, so if I was you I would give your line manager and personnel as much info as possible on Lupus and how it affects you. The best thing that I ever did was go and see a psychologist ( and believe me I am not one to discuss my feelings) but I needed to accept that my life was never going to be same and I needed to adapt to my current situation - it was very difficult but help me immensely. You find when you have an illness who your friends are and who are not, the ones who stay close to embrace them with open arms, the ones who don't just let them go - remember you can't control what people say about you so please dont let it get you down, just focus on your health your family and close friends. I hope you begin to feel better soon. Take Care and have a great weekend.

G

[goingaroundthetwist in reply to gertie]

Hello Gertie, Thanks for answering. This is a marvellous site as many sufferers can link into what is being blogged. I typed out a synopsis of all the symptoms and sufferings since I was 20 and things before for the second appointment, which the Rheumy said was very helpful. I was dubious as I thought I was starting to obsess on this. I will start a journal as of tomorrow, as although there has been an improvement on all the current medication from the depths of being unable to move, bath, get out of bed or do anything at all, a lot of the swelling is returning, the pain has never left. I can concur with being penalised for battling on, my hours are part time and my work has been reasonably alright, although I did go mental at HR for the wording in their 'standard' letter. I was a mature student up until this summer, and Uni have been dreadful. I've always worked weird shifts to fit around children, they are grown up now, and this was supposed to be my time to get the job of my dreams! So, I think you are right about going to a psychologist. Hope you have had a nice weekend so far, thank you so much for listening to me, I do feel very alone as I have only a very small circle of friends..

[talula]

i did'nt ask the question but have thought many times. thank you for your clear and concise answer, i found it very helpful. i did have an appointment to see a psychologist but chickened out at the last minute, am regreting it now though! many thanks

[goingaroundthetwist in reply to talula]

Hi Talula, I think there's a bit of a stigma about going to see a psychologist, especially in the UK. I did see one about seven years ago along with a counsellor! They did help, even if it was just an opportunity for me relay all my feelings and what was going on. You should definitely look into getting another appointment,

All the best.

[talula]

ah thank you. im not sure my gp will be very happy after cancelling! i do wish i'd gone tho.

sometimes you just really need someone to offload to, you know when people say hello how are you and we o fine, fine. whether it's family and you dont want to burden them or its an acquaintance and you know they're not really interested!!!! so yes i think we all need someone to share it all with.perhaps i'll give my gp another bash! many thanks for replying.

ps love the name!

[goingaroundthetwist in reply to talula]

Hi Talula, yes, people see you and say you are looking well or you sound better, little do they know you are holding it together by a thin thread. I wear makeup to make me feel better about how I look and how I feel about myself, as I'm neither use nor ornament - then it covers up my true appearance and perhaps gives people the wrong impression. I've become so sick of trying to explain what's going on that now I just say that I'm ok, so I totally get what you are saying about telling people you are fine. People aren't able to comprehend all the symptoms and pain so their attention span isn't very long. Even my family don't get it, as I'm a victim of my own success as mum can do anything. Hope you have as good a day today as you can.

xx

[talula]

ditto! will reply asap