COCO, RAIN CLOUDS AND POKÉMON HUNTING: Dear Friends... - LUPUS UK

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COCO, RAIN CLOUDS AND POKÉMON HUNTING

Dear Friends,

I wanted to write something a few days ago after our mutual beloved friend Barnclown (Coco) had spine surgery - to say she had come through it, bantered in a Fentanyl induced cloud with one of the surgeons, and then faced the long nights post surgery on a trauma ward. She is home now and will write her own magic post as and when strength returns.

June is here and it is almost the middle of the year, the halfway point, and rain and sun are battling it out for dominion. For months I have been using an augmented reality game called Pokémon to make me walk and walk from one village to the next and back, feeling goofy and silly and also deadly serious about fighting the basic nature of this disease, which is to destroy all goofiness and silliness in us by confining us to hospital bays and PICC lines and stomach churning anxieties. Not to mention continuous low key depression and simmering PTSD rage.

Coco asked me about Pokémon while in hospital... so I caught a little creature right there on her bed... I don’t know how long this will last... it is such a strain on my eyes 🙈 but how else to combat the Wild Woman straining under decades of illness? Who am I? I wonder on a daily basis. Do you ask yourself this question?

I am on a low dose of Myfortic, I continue with IVIg and I want to believe all traces of campylobacter have been obliterated from my bloodstream. For now, that’s enough. Meanwhile I got rained on beside Isaac Newton’s apple tree in the Botanic Gardens, and meanwhile a moggy climbed onto my lap by Anne Frank’s tree on the hospital campus ... my expression reads: ‘Yay a strange cat loves me! Eek will she ever get off my lap? Also, is she ok? Sick? Sad? Yay she really loves me!’ 💜🍎🐯🐺♥️

Shaista x

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This is without a doubt one of the most inspiring posts ever!!!!!

Pokemon hunting, what a fantastic idea. I’m sure this will motivate not just me but others. Something I can certainly enjoy with my 5 year old son. Thank you

Please send my love onto Barnclown 💖💖💖. I hope that Pokemon doesn’t try and take over the hospital bed 😉

And for you , carry on catching Pokemon and carry on your positive thinking and doing what makes you feel good .

Xx

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Oh yes definitely play with your son!! My 8 year old nephew is arriving in a week... it will be Pokemon central here ... all I wish for is that I don’t pick up an infection while the kids are here 🙈 Thank you for your lovely words about my post. Will send on your love to C 💖

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So we went Pokemon hunting this evening, even though I have a stinking cold I wanted to embrace your post and turn it into a positive for me and my boy.

My goodness I didn’t realise how many of them live on my street 😂

Thank you once again xxx

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Lisa this makes me so happy! 🐾🌻🦋💜 Thank you for sharing the image of you and your son walking together, your phone buzzing with each magical appearance. What did he say about it?!! It’s double candy week so a good day to start ... 😄

But now that he’s asleep I hope you are having a hot ginger drink to take care of that cold ... a rainy day to be out 😬😘

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He absolutely loved it. We only stopped because we ran out of balls 😐

We ended up having a 20 minute walk together , thankfully it was not raining at the time. We both slept very well last night too .

Feels perfect having that time together, which is exercise made fun xx

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So pleased barnclown is doing ok, I can imagine her bantering with a surgeon!

Love your post and going to have to try the pokemon thing out. I spend 3 days every 4 weeks stuck on a hospital bed so wonder if any creatures in my hospital!

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There will definitely be Pokémon about that hospital bed of yours! Maybe a baby wolf, or perhaps something gentle like a teddy bear... may I ask why they stick you in there for three days every month?

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I have iloprost infusions for 3 days. I don’t tolerate it overly well so stuck in a bed attached to a monitor so it’s very tedious! However, Pokemon go is downloading right now. I’m on a Scottish island and spend a lot of time up and down to the mainland where the tertiary hospital is so going to try it out tomorrow round the airport and hospital, can’t wait now

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No way! This is making me smile so much 😄 (obviously not the grim Iloprost bit 😬) ... Scottish Pokemon. They better watch out ...

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I will let you know if I find any.. do you think I will look like a mad woman searching???

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That’s what I always wonder! Please be in solidarity with me on the mad woman front 🤗

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I found squirtle in my kitchen!!

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This is so exciting to read! 🐢

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Found loads in the hospital including one below twitchytoes displayed artwork in the children’s hospital! Thanks so much for your post, it’s kept me entertained while being poked and prodded in various departments

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Ugh is it a rough day already?? I got an email notification saying you’d messaged me about finding a monkey beneath some artwork but haven’t been able to find that message. Glad you wrote again 🐒🐒💜💜

Good luck over the next three days xxxx

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I deleted that post by accident!

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I thought that might have happened! Never mind - at least I managed to read half of it in the email 😘🐒

(Does this mean you and Twitchytoes are at the same hospital right now catching Pokémon together?)

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Sadly no but her art work is quite a feature in the children’s hospital. I just wondered round there looking for pokemon and found the mad looking monkey right below her work. What are the chances of that!

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😆🦄😊

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Love this TT! xxx

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So pleased to read the news about Coco. She is home hurray !!!!Long may Pokemon last. Love the cat pic. x Hope the ivig keeps doing its stuff. I think I might be heading more towards it . Take care Shaista. Lou xx

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Hopefully it will be a good thing - this move towards IVIg ... apart from the fact that it ropes us either to a hospital needle or a sub cutaneous home needle ... Either way, I hope it agrees with your system... nothing works in isolation as we know only too well 💜💜

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Yes very true. xx

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Over the moon to have news of Coco, and that she is home, and very happy you are free of infection! Thank you for a wonderful post! xxxx

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So cool!!!!!

This is SUCH a great idea!!!!

Love this! ❤️❤️❤️❤️

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Hi Kelly! It’s pouring with rain outside my front door... water Pokémon must be swimming about!! Was not expecting such an enthusiastic response to my Pokemon playing - but I’m always grateful for the unexpectedly joyful surprises that come our way. It can often be a rather bleak landscape we inhabit...

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I think it’s a wonderful idea! It’s so refreshing and unique- and fun! It gets you moving!

The linguist in me wants to find a fun name for this and start a movement for this...

“coco-mon go!”

Who are you? Do you mean.... where are you?

Where’s Coco? Out looking for advancements for lupus! She’s raising awareness! For every Coco-man found, she’s giving 1/2 to Lupus research!!!!

Well, she and the big, “coco- mon-athon “ going on right now!

What do you say, Ms Coco-mon?

It would be a pretty lit 🔥 fundraiser for charity! Yay or nay?

Ps... I just realized it’s not your name that is not Coco... it’s barn clowns name that must be Coco... but this changes nothing! Even better! Spinal Surgery honors!

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Thanks so much for the update about our beloved Coco. I am so glad you are near each other. You sound like the best hospital visitor ever.

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Well... I’ll let Coco respond to that last part 😊 but yes I am close to the hospital and generally can’t keep away if my dearest friends are in there 💜

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Love this post🤗..so happy Barnclown is doing so well...meanwhile the pokemon game is addicting...my children are in their 20's and are laughing so hard when they call and I say I am playing pokemon. This game really has improved the way I feel. It is so much fun and I get excersise as well, my Rhemy is going to love it.

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A fellow player!! This is so great! And yes, exactly how it has been for me. They do say the best exercise is the one you’ll do... and although house based ones are important, I have never been motivated to exercise regularly ... EVER 😬 Walking in a green village, writing poetry while I walk, catching Magikarp... this is necessary to feel I’m not a prisoner of the four walls...

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Amen sister

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Shaista, thank you so much for the update on CoCo, she is so loved here. Please pass on my love. xxxxxxxx

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I will Karen, thank you for reading and sending love 💖

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Hi lupus in flight

A wonderful post from you highlighting a wonderful new tool to help us walk and do something fun with family and friends!. Genius!

Lovely to know Barnclown is home and I just hope she's coping with her naughty digestive system after all that fentanyl!. Do give her my love if you see / chat to her soon.

Do hope you stay as well and infection free as possible lupus in flight and have lots of fun with your nephew coming and Pokemon!.

All the very bestXx😊💕

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Thank you 😘😘 I think you know how rough things are for Coco - it will be a long recovery process... the Fentanyl was pretty brutish on her digestive system...

Nephew and niece will need their aunty Shai to have a ton of energy... but hopefully we can just watch movies in bed too!! Xxx

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I think Coco is so brave lupus in flight with all she has to put up with!. Really do hope she makes a good recovery but know it will take a long time!. Do tell her all her forum friends are thinking of her and sending their love.

It sounds like your neice and nephew are going to have a lovely time with Aunty Shaista and it's wonderful they will understand when down time is needed! Enjoy your time with them, it's very precious!. Xx

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Great a hospital therapy kitty! What will they think of next🐱 maybe🐘🐧.... Sounds like Pokemon is an interesting form exercise & glad it's working for you to overcome/distract you a bit from the daily lupus grind.....

It was really kind to up date us on Coco been wondering how it all went this week...more hugs & well wishes from me too...like the thought of visiting named trees 🌲🌳 & be inspired by notable lives...

Hug to you too.ml😀

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Coco and her husband have planted thousands of trees...and visitors (lost teenagers and the local wildlife and all) can be inspired by Coco's notable life, forever and a day :) ...joyful thanks to Shaista for updating us XOX

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Thanks for letting me know....a forest....great...good ole Coco....ml

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😉 dear eekt is too kind: 🦡 did all the planting (took him 5 years: 20,000 native trees & shrubs)...the health stuff made me put anysort of planting etc on ‘pause’ longterm many decades ago...but i do cheer him on!

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Welcome back Coco! I’m hoping you taking a sneaky peek on here means you are recovering well. Take care my friend, I’ve been thinking about you a lot xx

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😍👍 2 weeks on from the chop, am just dipping toes here...feels SO GOOD to be with you guys..hope your mix is cooperating with management 😉...am going to post a bit about my stuff asap, today or tomorrow or...🤞❤️🍀

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You just take care of yourself, look forward to the update when you are able

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🤩👍🤞✌️🍀❤️

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Hi Maggie, I think Emma Thompson was at the opening ceremony of the Anne Frank tree... I love the naming of trees and trees being planted for people we want to remember, going on for as long as trees do ... so much longer than humans do 🌳♥️

Yes Coco and her husband have planted a magical wood, an other worldly and yet very real haven... hard work and a powerful inner vision 🌳🌳🦋🦡

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Thank you so much for letting us know how Coco is. It is really great to know that she has come through the surgery, bantered with the surgeon - in what I can only imagine was her own inimitable way! - and that she is home!! If you visit her, perhaps you would give her as much of a hug as is possible (air hug?), from me, Mrs Mouse. Thank you!

And I love the cat!

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A beautiful post and much ❤️ to you both xx

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Lovely post Shaista - many thanks!

I’ve downloaded Pokemon now and am planning to inaugurate mine later while looking around the new island hospital here today - visiting the new dentistry/ oral medicine department for some antibiotics for simmering abscesses!

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Oh accesses are so painful 🙈 Hard to concentrate on anything when you have mouth ulcers or a tooth abscess ... hope they give you something decent and fast working ... and let me know about the inauguration!! Wonder who you will catch first 😘😘😘

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Well life is pretty surreal my end Shaista! I’m up north having to use chemo cream on my lower lip for 3 weeks with monthly intervals. This meant that the young oral medicine dentist couldn’t look inside my mouth easily as it’s too sore for me to have anyone touch my lips or open wide,

So, having established that I was his first ever patient in this spanking new hospital’s dental clinic, he gave me antibiotics, explaining that he could just see infected gum around both old crowns. He also told me that the disgusting sour taste I’m always battling with is chemical changes to my saliva from Sjögren’s. No one has ever explained this to me before!

So I left knowing a bit more about my disease while clutching a prescription for yet more antibiotics. Then I decided to go around the new and amazing island hospital looking for artwork we made and installed all around the old hospital 5 years ago.

I found 2 Pokemon creatures on my travels but no artwork. Then I just saw up above on your post here that Rolybear found a monkey under our other artwork installation in the mainland hospital!

The irony is that she’s playing your Pokemon game for distraction in the big mainland hospital while I’m using it for distraction in the new neighbouring island hospital! Furthermore she’s caught more creatures than me and managed to locate some of my old artwork to boot!! X

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Thanks for your post.

It neatly encapsulates how I feel about my lupus.

I finally got a diagnosis about a month ago,after years of mild illness and the last 18 months of unrelenting detioriation.

I also have a diagnosis of CTD NSIP,Caused by the lupus.the rheumatology dept of the Centre for excellence I now attend have been wonderful.

Pleased to know what’s actually wrong with me.

I’m now trying to work out a way to feel better and enjoy life again. I’m generally happy go lucky type of person,thi s Disease is eroding my sense of humour. Nmext rheumatology appt,in a month.

I think I need to ask her foramore specific plan of action. As it is nowI feel so rough I can’t sort out 1 symptom from another.has anyone got ideas what I can ask her about day to day management of lupus.

Have been on azatropine for nearly 3 weeks now. They said my kidney bloods were slightly better?.

Thanks for reading this

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‘Mild illness’ 🙈 Aren’t we all always diagnosed with ‘mild’ lupus?!! Doctors have no idea how that damages us psychologically. It’s not mild to have auto immunity. It’s dangerous and exhausting.

I’m glad you have a diagnosis even if new roads of medicines have now opened up new anxieties.

Only advice I would give is to somehow motivate yourself to keep a record ... find a diary or planner that appeals to you (I have a large pink one 💖) and start scribbling down notes.

Doctors invariably ask broad questions... the broadest being, ‘So how are you? How have you been?’ And to try to encapsulate months of a complex web of symptoms is impossible. So just make notes as you move through the days and weeks. No pattern may emerge ... but you won’t feel as crazy chaotic when you face your rheumatologist in a month...

Good news about the kidney bloods though xx 💜💜💜

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Ah yes, the 'mild Lupus'. I've been cheerfully reassured that I have 'mild Lupus' (because it isn't affecting my kidneys being the rationale most frequently given), alongside the myriad of other conditions/stuff. Frankly, given how my daily life usually is - chronic pain, mood changes/swings and anxiety, severe gastro issues, this is increasingly of little comfort to me. Thankfully, my rheumy is brilliant and understands this. But GPs.... Don't get me started! (it could be a looong rant)

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Yes, mine is mild too! It really hurts me when they say this and put it in their letters. Walk a mile in my shoes. xxx

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Maybe they should first acknowledge the impact of the disease on our lives and then mention the “mild” with a definition. For years, I didn’t understand why I felt so bad if I was “mild.” Now I know that is doctor speak for no organ involvement, nothing life-threatening. But this should be explained to us!

K

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I think you are so right about “mild”🤷🏼‍♀️🙄. No one has ever called my RA/ Lupus/ Sjögren’s/ UCTD/MCTD mild but they do bang on about “functional overlay” and imply that we autoimmuners have heightened sensitivity to pain.

But if that is the case then how is it that friends of mine with the same problems as I have with slipped discs, dental abscesses and kidney infections - but no autoimmune disease underlying - tell me that this is the worst pain they have ever known and are hospitalised with these?

Whereas I’ve put up with post op sepsis, pancreatitis, pneumonia, slipped discs and today, dental abscesses, without even realising how serious things have got until each has become fairly advanced?

And we can all look to Coco for verification on the courage some autoimmuners have in meeting challenges of autoimmunity head on of course! X

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Big hug from me Coco xx

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Thanks so much Shaista for sending us news of Coco.

She is such an inspiration as she battles to fight all that Autoimmune diseases throw, yet she still manages to make it all the more bearable for us when the going is tough.

As you have done too with this wonderful post!

Send her so much love and thoughts from all of us on here! XX

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Hello Shaista

Thank you so much for writing this lovely post. I had been wondering how Coco was doing and somehow missed this post, so I am very relieved to hear that she is home and recovering. Please send her my love and best wishes. We all miss her here.

My children are older now, but a few years ago they loved Pokemon hunting and it gets them outdoors on these searches too. Your nephew will love it!

I know what you mean about asking yourself, "Who am I?" I have been doing this a lot lately. Not sure if it's midlife crisis - 45 in September - arghhhhh - or the illness? Or maybe a combination of the both? I am only 5 years into the diagnosis and after a recent little flare, I have been realising more and more how living with a "chronic illness" effects your mental state. I try to stay positive, I am very lucky to have 3 children and a wonderful husband, who are my world, but every now and again I get a little overwhelmed and anxious, I guess, about living with this illness forever. Probably never working again etc.

Thanks again for posting.

Have a good day.

Wendy xx

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😍 💐💐💐💐💐💐 THANK YOU dearest Shai + EVERYONE here for ALL your loving messages...you ALL mean a GREAT deal to me...where would i BE without your solidarity + sense of wonder & fun ...i doubt i could’ve survived those 3 nights on neurosurgery ward in 1 piece without you, 🤩 Shai: you visited like a Guardian Angel (those days of IV fentanyl + steroid HIGH sure did reinforce that simile) - a Pokemon playing Guardian Angel 👍: COOL 😆....am going to pull my act together and post news asap....but for now:

❤️🍀❤️🍀❤️🍀❤️ Coco

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Oh darling Shai, I am so pleased to hear from you; your perception on life’s ups and downs always puts a rainbow 🌈 into my vision.

Love and hugs, Mémé 💛

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