Life goes on...: I posted several weeks ago about... - LUPUS UK

LUPUS UK

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Life goes on...

skylark15 profile image
7 Replies

I posted several weeks ago about my first appointment at the RNHRD centre of excellence for lupus in Bath. That went well and since then I've had various investigations including nail fold capillaroscopy, cold stress testing, and thermography for the Raynaud's, as well as a joint appointment with rheum and dermatologist. I expect to get results at my next appointment, in August. I've also had a muscle biopsy to see if electron microscopy shows inflammation, which may be due to lupus. It was done under GA, so I didn't know anything about the procedure but it's a 3cm wound in my left deltoid and the bruising is only just beginning to fade, after nearly 3 weeks! I will post an update once I have all results back.

However, I love the photos that forum users add (Barnclown I'm looking at you!) but I can't match them for beauty and usefulness, so I thought I'd post a photo of me still high as a kite (so to speak) just after I'd done a tandem sponsored skydive for Lupus UK! As I wrote on the fund-raising site, I can't currently walk any distance, I can't run and because my balance is so poor, I'm not confident riding my bike. However, as a friend helpfully pointed out, I can fall!

Tess

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skylark15
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7 Replies

Tess you look fabulous and intrepid! Well done you. All the investigations sound very thorough too so will wait with interest to learn more from you. X

skylark15 profile image
skylark15 in reply to

Thanks, TT!

It's so interesting that you use that word: I used to be intrepid but had gloomily decided that I wasn't, any longer. Maybe I still am! My great GP grinned & called it "defiance", when I asked him to sign my parachuting medical form.

T

in reply to skylark15

Definitely intrepid. It is a question of the starting point I feel so I use the term wisely here. Defiant (nice one GP!) and intrepid are now on the certificate with your name on it. Xx

Clover85 profile image
Clover85

Thank you for sharing this...I'm inspired!

Newly diagnosed, new to "all this".

But still gathering momentum in my choice to embrace the new me.

Slowly unpacking myself, finding out what features I have and what I can do.

Keep going everyone...keep going x

skylark15 profile image
skylark15 in reply to Clover85

Hi, Clover85.

Thanks for your reply. I wish you well on the 'unpacking' of the new you. What a great phrase! That's exactly what it can feel like but without an instruction manual. I hope you find this forum as helpful & inspiring as I have, in that (ongoing) process. Do keep us posted.

Tx

Barnclown profile image
Barnclown

😍😍😍😍

YAAAAAAAAAY SKYLARK

🌟🌟🌟🌟🌟

👏👏👏👏👏

🍀😘🍀😘🍀😘 coco

skylark15 profile image
skylark15 in reply to Barnclown

Hi, coco, undoubted queen of the emojis! It's always fun to see or to receive your exuberant replies. 😁😁

Tx

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