Thank you one and all, Mandy. Xx: I wanted to thank... - LUPUS UK


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Thank you one and all, Mandy. Xx

β€’13 Replies

I wanted to thank everyone who responded to my question about some strange night time experiences, it really was much appriciated.

My local gp was great as usual and has decided that I need to be referred to the neurology consultant... fun. Having had one lupus phycosis episode 2 years ago, he is concerned for the few brain cells I have, and yes, thats how our conversations go.....

Bloods etc also taken, heart 100 to 130 bpm most of time and costro just so painful, I really would like a lining transplant......πŸ˜‚πŸ˜ƒπŸ˜„

Anyway, compulsive rest for at least a week....yippeeeeee! there goes my skydiving plans...oh and the weight i lost will go straight back to my hips....again...

So in the meantime, I made this to go with the Cornish pin. As my aunt, the one getting married, is a Cornish Bard, it contains two special places, written in Cornish and English.

Quite pleased with it......sorry to be so proud but every goal I set and actually complete, gets ticked off my bucket one more done, now I can add another one.....

Again my thanks one and all.

May the universe grant you the strength to see this night through.

Much love, Mandy. X

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That Mandy is a beautiful and clever piece of work.

The photos make me remember some wonderful coastal childhood memories .😊

You should be very proud to share this with us.

Really pleased you did see Gp about your funny? or rather very unfunny experience which had me worried.Hope the referral comes up with an answer and something to prevent return of symptoms.

I get really hideous costochondritis too so know That feeling which can't be understood until you've felt it yourself.OUCH! And more Ouch!😒

Well skydiving this week would be a bit wet and watery anywayπŸ˜‰ don't you think.

If my sewing machine will stop fighting over the tension between us and let me continue my bike seat cover,working one handed is rather challenging, I will post a pic.

Take care of you and give in to the rest.

Hugs n stuff x

Yes, the sky diving def out the window...........ha ha ha....

Opted for a run up the tors on dartmoor...... yeh right.....πŸ˜›

Would love to see pic.... keep going... cant wait to see it.

Much love. X

That's beautiful Mandy , your quite a talented lady , I so love the sea , miss it so much .gentle hugs

Chris xx

Thank you Chris. Xxx

I have a spare room! Only 5 mins from sea and our family beach hut, you would b more than welcome.... you would just be surrounded by my giant

Much love. X

LOL no I have an open invite to a friends in Luxulan , she bought the old vicarage there and I just have to get there it's a 5 hour drive from me I think πŸ˜– I used to go to the beach every Sunday with Abigail with my kites and loose myself and re charge and be ready for the coming week . It used to take me 1hour 10 mins took others 1.30 /1.40 mins from where I lived never thought about fuel cost etc just went .

What is your giant cyborg by the way πŸ€”πŸ˜³ ?

Had social services here finally today going to have a re hab team in for 6 weeks to try and help me , look after me a bit more , then see about possible help after Abbi goes back to uni , they were shocked I applied for an assessment last August and that Abbi had taken year out of degree because I needed the help . And it turned out I new her from my dog walking days , so she new how fit I was again it all helps and can't remember if I told you but my manuel wheelchair comes next Wednesday so Abbi can help me go to supermarket from house and not take the car πŸ˜€ , new glasses came in today so I am getting them tomorrow 😊

Enjoy the wedding ,

Gentle hugs s always

Chris xx

Am so pleased you have some people to help now and the wheelchair will help - i have one in back of adapted car all the time, may not use it every moment but so glad its on hand when I do.

Your daughter sounds like mine.....amazing.

Am a huge dr who fan and have a giant cyborg in the spare room....picture should still be attached to previous post.

My daughter would always pick u up from truro station if you ever feel the urge....anything is possible with friends around you. X

I am discovering that on HU ,the friends I have found here are very special 😊.

On the fibro site on HU we have a ball when Dr who is on with who gifts to admin and who question and answer facts , and generally silliness πŸ˜€πŸ˜œ

Really tired today had to make calls on behalf of other daughter and take her hopping after . Going to have a nap in chair and see if I get a second wind πŸ˜ŠπŸ˜€


Chris xx

That's so beautiful & so meaningful...they'll treasure this for ever 🌟🌟🌟🌟

Am so glad your medics are on the ball!

Counting on you to take care & rest up

πŸ€πŸ€πŸ€πŸ€ coco

Beautiful and thoughtful wedding gift Mandy.

It must feel better to have your doctor on side, costochondritis is a scary, horrible pain, I get it with a flare, but nothing like you have experienced.

Rest up.



Really beautiful wedding present Mandy. So glad you saw your GP and they are following things up xxx

That is really beautiful. You have every right to be proud. Take care xx

That's lovely Mandy - you are very talented and I am sure the happy couple will love it.

Thanks for letting us know the update after seeing your GP - it sounds like he's on the ball anyway which is encouraging. Let's hope it's just yet another of those 'lupus things'.

I get weird costo type pains too - it feels like the rubber bands holding my body together have perished - that's the best way I can explain it. Some of my joints just seem to be falling away from the body - the joints themselves are relatively OK. My doc probably just thinks I'm weird when I try and describe this but I suppose we do have a connective tissue disorder and I just reckon that those connective tissues are giving up and that's why we feel like we're falling apart at the seams.

Take care!

Hi Mandy

Your Wedding present is beautiful and I'm sure will be treasured by the newlyweds. You are very talented. I am so relieved you are being referred to a neurologist and hope you get help soon. Rest up and TAKE CARE. X

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