Hello!

[_bunty_]

Hello fellow lupies,

I'm new here and wanted to meet people in similar situations. I was diagnosed with lupus in Nov/Dec last year during a flare. I also have CKD (chronic kidney dysfunction), temporal lobe epilepsy, anaemia, I'm partially deaf with tinnitus and I had a stroke in 2015 due to a PFO hole in my heart but am fully recovered. I'm currently in the midst of another lupus flare but my best friend is a GP and advised me to contact my rheumatologist who prescribed steroids for my crippling arthritis. Now I feel on top of the world! Does anyone else feel really high on steroids??

Since I'm new to this community, I was shocked and surprised by how bad others' experience of lupus can get. My only symptoms so far (touch wood) are terrible arthritis in all my joints and fatigue, but the steroids seem to have put paid to that. I'm waiting for an ophthalmologist to inspect my eyes before I start treatment with hydroxychloroquine. I can't believe how badly some people are suffering with their symptoms!

I'm lucky enough to have a very good GP back home in Gloucestershire, and have had good experiences all round with the NHS.

I just wanted to introduce myself and say hello, and wish everyone lots of love and luck coping with this difficult disease. It's good to have friends in similar situations, so I'm looking to make some, or die trying! (Not literally, hopefully.)

Love Betsy (bunty is what my friends call me)

[Penguintaz]

Welcome Betsy

Thank you for your support!

The terrible thing about auto immune is it can effect people in diffrent serverities and at diffrent times, it's awful to hear how some have suffered terribly or for many years but more inspiring to know they are still here and doing their best to support themselves and others!

That's what we are here a comunity to support each other Look forward to hearing more from you

[_bunty_ in reply to Penguintaz]

Thanks for your reply Penguintaz and for your lovely welcome!

I think these forums provide lots of encouragement and support for people, especially, having read various people's comments, those who receive insufficient support from their healthcare professionals. I'm very lucky in this respect as my GP is very interested in my case and always gives me the time I need to articulate my problems thoroughly. I just cannot imagine what it must feel like to be so alone, constantly fighting to be heard, and having to feel like a hypochondriac for something legitimate! It must be a total nightmare. In my experience (with some exceptions who I have never seen again) the NHS has always been there for me when I needed it. I can't imagine life for those who don't get the support they need!

Lots of love and support to you my friend!

[puffyface in reply to _bunty_]

Hi Bunty,

This is a lovely and helpful place for info and friendliness. I'm glad you've had such a good NHS experience. I also live in Gloucestershire but my GP is just too busy. I started trying to find out what was wrong with me by the private route because I didn't want to waste NHS time. Now the NHS provide my meds, but I haven't seen my GP for over a year. I'm sure they'll be there if we need them.

In the meantime, 'hello' and welcome.

Lx

[_bunty_ in reply to puffyface]

Hi Puffyface,

What a shame you've had such a poor experience with your GP! Using the NHS when you don't know what's wrong with you should never constitute wasting NHS time - but I know where you're coming from - I think it's a very British thing to feel self-conscious or guilty. Are you in a very busy area? I'm in the Cotswolds/Stroud cusp, and my GP always has time for me, but I guess if you're in a busier area it must be harder to get an appointment. Shame on your GP for making you feel like you're wasting NHS time, though! I'd beat him/her up if I wasn't so weak at the moment...

I sense that this is a lovely community and I look forward to being a part of it. I can't wait until I've learned enough to offer advice as well as simply getting it from others! Everyone on here seems so clued up about medicine!

Love Betsy x