Attention!: Hello everyone, Hope your all... - LUPUS UK

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misty14 profile image
21 Replies

Hello everyone,

Hope your all feeling better now its cooler and i hope everyone whose had covid recently is better too.

Just wanted to share this pic of tufted ducks with their mum who took a wrong turn and ended up in the path of a Queens Guard outside Buckingham Palace.

Hopefully it will help keep your smiles going this week.

MistyX

P.s. Had my Endo Appt and no more reducing steroids!. I can stay on 5mg for life. Just need to learn about emergency treatment ffom the Endocrine Nurses.

Still nothing from Gastro Consultant so i rang his secretary and he"s back ffom hols now. She's asking him to contact me this week!. We'll see!.

More of my foot injection has worn off so awaiting appt with foot surgeon. Will be a while. Will update later.

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misty14
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21 Replies
Spotty-ewe profile image
Spotty-ewe

Mrs Tufty wanted to show off her brood to the Queen and who can blame her? A brood to be proud of!🥰 I hope the guard will escort them safely to their audience with the Queen!😆 Such a lovely picture Misty. Really made me smile.That’s fabulous news that you’ve had your Endo appt and are able to stay on 5mg of steroids for life. 👏🏻👏🏻 Not so good your Gastro is only just back from hols and only has 2 more days left this week in which to contact you! 🙄 I’ll be 🙏🏻 and keeping my 🤞 that you hear from him tomorrow or Friday. And your foot injection wearing off is miserable. 😩 I hope the surgeon is in touch very soon.🙏🏻

My shoulder steroid injection last week has made a big improvement but it still isn’t 100%. Doc said to let him know this week how it is, so I must do that. Thanks again for the smile Misty. 👍🏻👍🏻 Such a cute picture. Take care.🤗😘🦆🐥🐥🐥🐥xxxx

misty14 profile image
misty14 in reply toSpotty-ewe

Thank you spotty for such a lovely message. Funnily enough i did think the pic would make a good caption comp and your lovely words prove it!. I hoped you'd like it, thought you would.

Its good the gp wants to know the efficacy of the steroid injection. Sometimes they need extra time to fully work. Let me know what he says and ill let you know if i hear from gastro. An appt or letter would be nice but take longer to come out of the hospital. I'm so jumpy for the phone now that its not helping my health!!.

Thank you for your wonderful support and i hope you have a relaxing weekend. Xx🦆💕🦆🤞🦆💕🦆🙏🦆💕🦆🤞🦆💕

Spotty-ewe profile image
Spotty-ewe in reply tomisty14

I appreciate your support too Misty especially during the recent emotional roller coaster I’ve been on.🥴 Thank you SO much. 🥰 I e-mailed my GP this morning re the steroid injection. I’ll let you know what he says, if anything, and yes please do let me know when you hear from your gastro. Nothing worse than waiting with bated breath every time the phone rings 😳 in the hope it is who you are waiting to hear from. 🤨 I hope you hear soon. 🙏🏻 It is very windy and showery here in the south of Scotland, but I prefer it to the 5 days or so of intense heat we had last week! 🤪 But nothing compared with what you poor folk suffered!🥵🥵 Hoping you are enjoying the change in weather Misty.🤗🤗😘🦆🐥🐥🐥🐥🐥🐥xxx

misty14 profile image
misty14 in reply toSpotty-ewe

I'll keep my 🤞 spotty that you hear from your gp. We can't directly email ours like that. They fear being swamped!. That must be really helpful. I do hope you get your Rheumy Appt soon too .

I'm still not hearing from mr gastro and i'm steadily steaming but trying to keep calm. 😡I just need to know something. Why is that so hard?.

The weather is a big relief here too but its speeding us towards Autumn which while very colourful feels a bit depressing. Leaves are falling already!. Have you noticed this?.

They're starting to reveal who the Strictly contestants are. An interesting bunch so far. If you look on the BBC Website in the Entettainment section you'll see them if you haven't already. I'm sad Aliajz has left after 10 years as he is such a character but he's off to new projects so might be interesting!.

4 new professional dancers are joining this year so really looking forward to it.

You are so welcome spotty , im just so sorry at all that you've been thru. Keeping 🤞you hear. Xx🦆💕🦆🤞

Spotty-ewe profile image
Spotty-ewe in reply tomisty14

We can only e-mail our GP by invitation only. It is a general hub for the practice so we have to put FAO our dr. This is only the 3rd time I’ve used it and each time on instructions from Dr N. Yes, I must chase up Rheumy - thanks for the reminder.👍🏻 How disgusting your gastro isn’t getting in touch leaving you in the dark. I’m so sorry you are being treated like that. 😡 I’m still praying you hear soon. 🙏🏻It will be a very different Strictly this year by the sounds of it. No I haven’t looked and I think I’ll leave it until it starts again. 🫣 Autumn - what a thought. Summer over already.😳☹️ Thanks again for your support and compassion Misty. 😘 It means a lot. 🤗😘xxxx

svfarmer profile image
svfarmer in reply toSpotty-ewe

Sorry to hear you’ve been having a hard time Spotty - sending hugs to you too 🤗🤗😘

Spotty-ewe profile image
Spotty-ewe in reply tosvfarmer

Thank you SV, I really appreciate it. Hoping all is well with you, Ian and the girls. 🤗😘xxxx

ExtremeDuvetDaze profile image
ExtremeDuvetDaze

Aww that is a cutie pic 🦆🦆🦆🦆😍 I hope they found their way back to their pond😃!

That is good news that you can stay on the 5mg and no more trying to reduce it and good the endo nurse will go through emergency treatment with you so you know what you’re dealing with.

Good luck with gastro too, I really hope he contacts you this week! I’ll have everything crossed for you 🤞🤞

Hope the weathers better for you, it’s cooler here now after a week of intense heat, torrential rain today and storms , it really was a sight for sore eyes , everywhere is so desperate for it. ☔️

Chat soon, thanks for the smiles lovely 🦆😁

🥰🌸🦆🦆🦆💐🌞🌻xxx

misty14 profile image
misty14 in reply toExtremeDuvetDaze

Thanks dear dianne for your lovely message and glad you liked the 🦆's. I hope they got back to their pond too!.

Im glad your cooler now as we are too.We don't want that again do we?. Ha!. Had a thunderstorm like you and front garden was flooded for a time so hopefully our lawns will recover!.

Its a big relief not to be on the steroid reduction merry go round anymore. I do hope your feeling better after the xtra your taking?.

It will be lovely to chat, there's a little package in the post for you. Should get it fri/sat .

Have a lovely weekend and i'll let you know if i hear ffom gastro consultant. TAKE CARE, big hugs. Xx🦆💕🦆☔

ExtremeDuvetDaze profile image
ExtremeDuvetDaze in reply tomisty14

Oow a package, you are a sweetie 🥰 thank you I look forward to that 🙏 It might be 15c cooler but I still feel too hot 🥵 but I’m not complaining because that was really unbearable, I’m glad you’ve had some rain too!

You’ll be pleased to know I’ve received a letter from the NHS saying that I’m eligible for covid treatments so I feel very reassured by that.

Yes I do feel better on the 15mg pred, I’m still getting some neuro symptoms on and off through the day and the odd episode but nothing like it was before the steroids, I feel pretty exhausted still because I’m not sleeping more than two hours at a time but also have a little buzz to get on with stuff, which I’ve not had for many many years, I’m worried they’ll take me off them, I’m reducing them at the weekend to 12.5 for two weeks then have a review with my GP next Thursday, they haven’t heard back from rheumy yet, I don’t want to go back to how I was, I’ve actually been able to get up and get downstairs in the morning something I’ve struggled with for years as I feel so wretched in the mornings, I’ve never been on a higher dose, I’m hoping rheumy will take note that I’m steroid responsive for neuro symptoms at this dose…. Panic disorder I don’t think so 😡🤦‍♀️ !

Anyway lovely, we’ll chat soon again, take care and I’ll let you know when the postman’s been 😃

Big Hugs 🤗 😍❤️❤️❤️Xxx

misty14 profile image
misty14 in reply toExtremeDuvetDaze

Oh diane doesnt it make you angry at these Rheumy Consultant's attitudes?. I am sad you have developed neuro symptoms but glad the steroids have helped so much. It shows its inflammation!!. It proves doesnt it how you really do need regular treatment to improve your quality of life!.

Maybe you could stay on 5mg?. Interesting you havent heard from your rheumy!. You really do need a change as panic disorder is insulting dianne.

Good luck with your gp review, i'm sure they will agree with you too. Let me know how you get on!. They do seem much more understanding of ypur health condition than the Rheumy!. Will be good to talk to them!.

Its only a little package. I still haven't heard anything and im steaming but trying not to!. Ha!. 😡.

TAKE CARE, big hugs. Xx🦆💕🦆🤞

ExtremeDuvetDaze profile image
ExtremeDuvetDaze in reply tomisty14

Little things are the best Helen bless you🥰

I spoke to the GP receptionist and asked her if there was anything yet from rheumy but nothing so she was going to get the secretary to send my rheumy a reminder to give him a nudge.

Just need to see what the brain scan shows too. I wonder if I need a neuro referral too.

I’m not surprised you’re steaming, you’ve had a lot of chasing up with your gastro, let’s hope you hear something tomorrow 🤞

Take care, catch up over the weekend.

😘❤️🥰💃🦓💖💐xxx

misty14 profile image
misty14 in reply toExtremeDuvetDaze

🤞dianne you hear from Rheumy soon about the brain scan results. Its horrible waiting and wondering.

Don't be surprised if he doesnt think anything should change. If he does then you need a new Rheumy as yes maybe you do need a neuro referral. This for me is his big test but its your body and life so you must make the decision!.

Have a lovely weekend and will enjoy your chat. Big hugs. Xx🦆💕🦆🤞🦆

ExtremeDuvetDaze profile image
ExtremeDuvetDaze in reply tomisty14

Thanks Helen, your support is so much appreciated 🙏and yes you’re right it will be a test for him , we’ll see what the scan results are because if there’s no change I’ll be back to square one and will definitely ask for a neuro referral, today hasn’t been a good day but I’ll tell you all about it soon.

Hope you have a good weekend too lovely big hugs 😊 😘❤️🥰⭐️💐🌻xxxx xx

weathervane profile image
weathervane

Love the cute pic misty , im a big duck fan , so is my youngest, he’s always looking for cute duck videos!I hope you’re contented with sticking on that level of steroid, I’ve only ever had short doses . It’s awful having to chase doctors for answers, i hope you have some luck this week 🙏🏼🙏🏼🙏🏼

I was meant to get rituximab next week but there was a problem with getting my bloods done , i tried to get an appointment as has to be done 2 weeks before the infusion, but couldn’t get sorted so they have cancelled that appointment and rearranged it for October!! I was quite annoyed but what can you do. Im going to go and visit my sisters the week after next instead in Newcastle, i have seen them for so long , really looking forward to it . Hopefully will have more energy as still tired after covid, my sistes love walking .

Take care and have a lovely weekend xxx

😘 🤗🤗🍀🍀🌻🥰💕

misty14 profile image
misty14 in reply toweathervane

Lovely hearing from you weathervane. I'm so sorry you couldnt get your blood test done so your retuximab is delayed till Oct. They were really quick to change that appt, didnt give you a lot of chance, but i guess spaces are badly needed!.

It will be great for you to see your sisters and be away for a few days. Lovely change of scene so i hope you have the best time. I'm going out to coffee with my nurse friend at Bank hol. We've not been able to for 3 years like you seeing your sisters so i'm really looking forward to it.

I still haven't heard anything from gastro consultant but its giving me chance to process the Endo condition. Its very double edged as great not to be reducing but a worry about their side effects as i'm still young. I'm sure i will feel better about it all when ive seen the endocrine nurses and learn't more.

Have a lovely weekend and enjoy your trip up north. Keep well. Xx🦆💕🦆🤞💕

P.s, i will look out for more duck pics, so lovely you liked these. X

misty14 profile image
misty14 in reply toweathervane

There was an interview weathervane in our paper yesterday with Adrian Dunbar. Doesn't mention Strictly but does mention possibility of a new series of Line of Duty. He's also appearing as a new cop Called Ridley and its a gentler whodunnit he says for whole family. It starts on ITV on the 28th at 8pm!. We'll try it. Thought you'd like to know, enjoy your trip. Xx💕🤞💕

weathervane profile image
weathervane

Hi misty, i hope you get to see the endo nurse soon, is that at a clinic or can you call a helpline for advice ? Its good have a number to call when you need to talk through issues. Im a big line of duty fan , ive seen the adverts for Ridley so that’s another on my list , i do like crime fiction 😆.

Enjoy your catchup with your friend , you will have lots to chat about. I can’t wait to see my sisters , not the same just talking on the phone.

Take care xxx 🤗🤗😘💕🥰

misty14 profile image
misty14 in reply toweathervane

They will contact me weathervane and it will have to be a clinic at our hospital as my parents and i must learn and do the emergency injection. They do have a telephone number and email address for contact like the Rheumy nurses so that will be good for future help if needed. The Endo consultant may discharge me once all this is set up.

Its good you saw the trailers for Ridley. My parents like crime fiction too. I like some. Do you read or rely on the TV ones?. We'll try this one, some of the tv ones are too brutal.

Its certainly not the same phoning as face to face contact. You've got so much to catch up on with your sisters. Have a lovely time. Safe journey.

My nurse friend was walking past my house last night and suddenly thought to ring as she hadnt heard from me. So very kind and special. Xx🤞🦆💕🤞🦆💕🤞🦆

svfarmer profile image
svfarmer

Hi Misty what a lovely pic - really did make me smile. Really hope you hear from hospital this week - sending hugs to you 🤗🤗😘

misty14 profile image
misty14 in reply tosvfarmer

Thanx so much svfarmer for your good wishes for hospital. I know he's back from hols now so hope to hear before the bank holiday!!. 🤞So pleased you liked the 🦆. I hope you all have a lovely week and keep well. Xx🦆💕🦆🤞🦆💕🦆🙏🦆💕🦆🤞🦆💕🦆🙏

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