LUPUS UK

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Cutie Time Again!

Hello everyone

Just thought i would show you this picture of a beautiful duckling about to catch his dinner!.

It was such a good photo that its won a Birds of the World photo contest. Hopefully you agree, its a very worthy winner and worthy for 'cutie pics' too.

Do hope your all coping with the sun and heat and keeping safe.

MistyX

P.s. Just to update you all, my trusted gastro appt was really good. He said i could still have gallstones and that January's scan hadnt been done properly. He's managed to get me a re-scan with a Consultant Radiologist, don't know when. My liver bloods are not showing clear cut results but definitely something so he wants a couple to be re-checked before telling me what the diagnosis is!. Either AI hepatitis or my drugs causing problems. Im back to waiting to hear from him. We don't make it easy for them do we?.

My Rheumy appt on fri was bruising , he was very dismissive of everything so take care everyone. Consultants are looking at their waiting lists all the time. At least i won't see him again for a year!. Thanx so much everybody for all your support. Really appreciate it. X

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misty14

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Lovely picture..

Sorry to hear about rheumy visit. Are you going to give feedback using NHS Family and Friends Test?

I think so often their goals and priorities don't always align with ours. You hit nail on head assessing most likely.

..hoping next time much much better...you might get someone else ..?

It is good other things are being followed up thoroughly. This could lead to rheumy having to engage more...or seeing another rheumy..

Take care 🙏🤗💐 🐧🐱🦊🐶🐻🐢🦉xx

I hope striated your test went ok. Sorry you've got a lot of problems too.

Thanx for your lovely message. I do think Rheumy's have tough attitudes but im happy having them in the background looking after me!. I don't want to consult them face to face if they can't do it nicely. It does emotional damage as ive had so many over the years. At least ive got a year to recover from this one and hopefully he may have moved on. He was a registrar not a consultant yet!!.

Im lucky i can consult the nurses if im unwell he said. I hope he'll have to eat his words once i hear from my gastro consultant soon!.

Do hope you get good news striated and keep watching as i think you'll like my next pic. Keep safe. Xx🦆💕🦆🤞🦆💕🦆

Funny today as eye hospital referred me back to hospital I went to last year. Very different. A lot had changed. They have put down diagnosis I got from second rheumy. ...the building was different inside. Had been hard going back but it was fine.

Looking forward to next pic

Take care 🐱🦊🦝🦒🐭🦔🐼🐳🐬🦩🏵🌼🙏🙏xx

Good luck striated and I hope you get help quickly now. It can bring back awful memories when we have to go back to old hospitals. Good for you for coping. Take Care. Xx🐥💕🐥

Awwwwwww…..too cute for words 😍♥️♥️♥️🤗💋Thanks for sharing sweetie.

Sorry about the outcome of your health and the Rhuemetologist bad encounter…….my empathy as I’ve countless such experiences myself in my 71+ years.

Soooo happy about your gastro appt.

You take care hun. Keeping you (& everyone on HU) in my thoughts and prayers sweetie.

Love and prayers.

EJ 🤗♥️🥰🙏🕊🌿🌸🦋

Thanx so much honeybug for your lovely understanding message. Im sorry you've had so many tough rheumy consultations in your long illness career. I do think its partly their tough attitude.

So pleased you loved the duckling. I think you'll like my next one so keep watching. Your so kind to keep us all on HU in your thoughts and prayers sweetie.

Keep safe and as well as you can. Xx🦆💕🦆🤞💐💕🦆💕🦋💕🦆💕🌻💕🦆💕🤗

Thank you misty14 for your sweet loving 🥰 reply. I hope you are doing better sweetie.

Please keep the cute pics coming as they really help me cope these days (monthly Mira pics too). 🥰

I would just love to hold one of these little fluff balls. 🦆

Sending you gentle fluffy bigs hugs hun.

Love and prayers.

EJ 🤝🤗♥️🥰🌿🙏🕊🌿🌸🦋

Thank you honeybug, i will keep the pics going as im so pleased that you all love seeing them. I love finding them.

I did see on a previous thread that your specially having a rough time at the mo. I will keep you in my thoughts and prayers for a good recovery.

You will love my next pic as its really fluffy!. I agree i miss having something to cuddle too. You can't with a prickly hedgehog although they've got the cutest faces!.

Keep well and safe sweetie. Xx🌈💕🌈🦋🤞💕🦆💕🙏💕🦆💕🦔🌺🌞

Thank you Misty. 😍Yes I’m seriously ill atm. Doing the best I can to recover. Thank you so much for your support and prayers. Much appreciated hun.

Looking forward to your future pics. They are always winners with me.

If I don’t respond about them please know it’s because I’m ill but I always love them.

Love you too sweetie. Take care have as pain free a weekend/future as possible.

Love & prayers.

EJ 🤗♥️🥰🙏🕊🌿🌸🦋

Im very sorry honeybug to read that you are. Its just lovely to know how much you love the pics and i hope to keep seeing your emoji's for a long time to come. All the very best and keep fighting. Sending lots of love and healing thoughtwaves. Xx🤞🦋💐🥰🌷🙏

🤝♥️🥰🤗🙏

Love this action photo, definitely a winner 🏆 . Saw a mummy duck with her chicks on the river Lagan at the weekend, amazing how they swim in a tight group 🥰Things seem to taking 1 step forward and 2 steps back at the moment, at least the gastro is on the ball . 🤞🏻🤞🏻🤞🏻things will move forward with rheumy as well.

I have a rheumy appointment in 2 weeks, rheumy nurse was going to speak to her re this possible flare ( knee is swollen now) . I just have to pace myself.

Did your gastro give you any advice re diet that might help , shocking last scan not done properly, you should have been called back in 🤨

Take care and look after yourself xxx

🤗🤗😘💕🥰❤️🌞🌻🌻🍀🍀

Thanks weathervane for your lovely message. Im so pleased you've got a rheumy appt in 2 weeks. Sorry it looks like your having a flare. You really did miss the retuximab infusion!. Its tough!.

There's nothing for rheumy to do as he's happy with me on 17.5mg mtx and 5 mg steroids. He did say if i became unwell they would always see me like they're doing for you. I prefer talking to the rheumy nurses than a consultation like fri's. Yearly phone call is fine with me.

Im waiting really for gastro letter and scan and Endo appt in July will be interesting as he warned me i may have to try the steroid reduction again as its now important i have the 2nd adrenal test done. 3.5mg ensures no false positives he said!. Will see what she says.

My gastro did give food advice as i asked him. Cutting out fat and eating healthily, fruit and veg best which i do a lot anyway. Im eating less fat and its made a difference to the pain so could well be gallstones i guess?!. Im losing weight too.

Lovely you got to see your local ducks. Hope your hip injection is still helping. My foot one is. Have a safe rest of the week and i do hope your Rheumy appt goes better than mine. Am having more coffee dates with friends. Xx🦆💕🦆🤞🦆💕🦆

Haha, how lovely to see the wee duckling catching it’s tea, or is he saying, “Quick, get away before my Mum sees you!” Whichever it is it is a fab photo and definitely worthy of the prize. Thanks for sharing.👍🏻👍🏻

We are surviving the heatwave thanks Misty because it never arrived here! 😆 We’ve had a week of wind and showers with cool temps. ☹️ In fact our heating set at 17 degrees came on a couple of evenings for a short while until the house reached 17 degrees. 🤷🏼‍♀️

SO pleased you had a brilliant appt with your gastro.👍👍 I hope it isn’t too long until you hear more and get another scan.🙏🏻 Not so good about your Rheumy. Not professional of him at all to be so dismissive of everything.

I’ve been unable to respond to posts for a few days being only able to ‘like’ or ‘report’!!🤷🏼‍♀️ So it is wonderful to be able to comment again. I’ve had a rubbish day for several reasons, so your cutie post was just what I needed. 👍🏻😁 Thanks so much for sharing Misty. Love and hugs 🤗💕🐣🐥🦟xxxx

Thanx spotty for your lovely mesdage and great that you could respond ok. So annoying when it doesnt work properly.

Im very sorry you'd had such a rubbish day so pleased i could help a little with cutie duckling. Love your caption too, it would have been a good pic for that .

Ive just been turned down at our local vaccination centre for not being on quite a high enough dose of mtx to qualify for the 5th jab. I thought of you and did also mention lupus and how it makes us so vulnerable to infections but the nurse stuck to her guns!!. To miss it by 2 5mg is galling but they're right to be strict. It sure comes down to who you see!!.

Im relieved really spotty as i wasnt sure how id be if im trying to have another AI. Makes me feel more vulnerable now though!.

I do hope fri goes well for you spotty. Will keep my 🤞for you. Take care and im thinking of you. Keep safe. Xx🦆💕🦆💐

Pleased you liked the caption Misty - it is just what it looked like to me. 😆 I’m sorry to hear you’ve been turned down for your 5th jab, but it could be a blessing in disguise. 🤔 You never know. No, we’ve also found the nurses never budge re the jabs but our GP has ordered the vaccine centre to give us the jab for the last 2. So if you feel very vulnerable maybe your GP could help? But it might be a different system down your way to what we have here in S Scotland, I don’t know. Thanks for your kind wishes for Friday Misty. Thinking of you too. Take care. 🤗😘💖🐏🐥xx

Thanx for your helpful message spotty. I agree no jab could well be a blessing in disguise!. I was worried at having it. You feel torn all the time don't you?.

I hope to get a gastro letter soon with results and treatment plan.

Thats a good idea about asking my gp's help as i thought of you this am, having to do just that!. Will keep it in mind.

🤞for fri, hope it goes well. Take care. Xx🦆💕🦆🤞💕🦆💕💐💕🦆💕🌞

Yes, it is difficult to know what to do for the best at times isn’t it? Just go with the flow as sometimes things happen for a reason. But no harm in asking your GP’s opinion. That’s what I did and he decided I should have it and got straight on the case. Thanks again for your kind wishes for Friday Misty. I appreciate it. Take care. xx💖🦆🐥💖🦆🐥💖

💕🐥💕👌🏻👍💐👌🏻🙏🌺💕Xx

Sorry you’re having a rubbish week spotty😢I hope things improves as the time goes on. Thanks for your message, I’ll get back to you soon, it’s all been a bit hectic this last week and I’m feeing pretty exhausted, the heat didn’t help either, it was 25 c in the bedroom for a couple of nights last week and way too hot in the day here, I’m pleased it’s overcast and a bit cooler now it’s down to 21.5 🙄, I have a friend in Spain who sent me readings of his thermostat 46 outside 33 inside😱 I think I’d struggle to survive in that heat🥵! I prefer the winter these days🥶 apart from Raynauds being so much worse of course!

Take care and chat soon

Big hugs 🤗 💕🌸🦆🦆🌻xxx

Hi Diane, thanks for your kind wishes. Sorry to hear your hectic time is exhausting you so much along with the hot weather. Phew! 25 degrees in the bedroom is HOT.🥵 We on the other hand had our heating come on to bring the house up to 17 degrees! I hope it continues to cool a little for you. 🙏🏻 Don’t worry about replying - no hurry at all. Yes, Raynaud’s makes extremes of temperature very hard to cope with doesn’t it. I grew up in Queensland but I don’t think I could stand the heat now!🤪 Last time we chatted on Misty’s post we were talking about rashes. I’m going to post pictures of the rash I had that got me finally diagnosed with SLE. See if it resembles what your poor Dad had.

Take care and keep cool!😉 Lots of hugs 🤗💕💐🐥xxxx

I used to love the hot summers, not now! I often say I’d like to live in Scotland, for its climate, oh and it’s history and castles, beautiful scenery and lovely people of course 😊 oh and they might be back in the EU one day too 😃 oh and free prescriptions… oh the benefits of Scotland just keep coming 😉 🏴󠁧󠁢󠁳󠁣󠁴󠁿

That’ll be interesting to see your rash.

I still get Raynaud’s in the summer just not as bad or as painful unless it’s a particularly cold day 😖

Chat soon

Take care 🌸🥰❤️🌻xxx

Aww, move up to Scotland Diane. 👍🏻👍🏻You’ll love it but maybe not the midges. 🦟🦟 With Lupus I react TERRIBLY! 😩 I have just posted the rash. See what you think. 🤗😘xx

That is a lovely photo. A worthy winner of the contest.

Good to hear your gastro appointment went so well. It feels so good when you see a doctor that really communicates with you and does all they can to help. So sorry that your rheumy isn’t the same.

I got a letter from my rheumy this morning. Surprised me as she doesn’t usually send me a copy. It confirms that I do have Behçet’s. It is good to have it in writing. It also said I have B12 deficiency which I knew nothing about. Used to get B12 injections but they were stopped before I even started seeing a rheumatologist. This was because my GP back then said I didn’t need them. Being deficient in B12 could explain some of the symptoms that I get. Also said there are leukocytes in my urine. No idea why or what to do about it. Might have to make an appointment to see my GP to discuss things.

Take care and enjoy the rest of your week. Xx 💉 🩸

That is brilliant ge to have your diagnosis in writing of Behcet's. You've struggled so long to get this recognition so you must feel so relieved.It makes such a difference to see a consultant who knows us and these quirky illnesses. I felt so relieved seeing my trusted gastro. Ive had a big contrast in consultations from one who knows me and one who doesnt.

Ive had leucocytes in my urine recently . It can be a sign of infection. A B12 deficiency can make you feel so tired and unwell that its a good idea to see your gp about both things.

Do hope you manage to get an appt soonish. It was good the hospital picked them up.

Im back to watching the post as hopefully ill get a gastro letter soon when decisions are made. Keep safe and well and i hope you feel better soon. Xx🦆💕🦆🤞💕🦆

Hi Misty what a great photo - not supervised it’s won a contest.

Sorry to hear of your horrible Rheumy at least your gastro appointment went well - are you still getting adrenal problems ? Xx

Thanx svfarmer for your lovely message. So glad you liked the duckling. Its a beautiful photo!.

I do still have adrenal problems thanx for asking but luckily ive improved being back on 5mg steroids. He did give me a lot of info re adrenals and said i needed this 2nd test even more now!. I said i was willing to try reducing again but we've agreed to see what my Endo consultant says in july when i see her.

Problem is getting to 3.5mg as any higher they can have false positive results. Nightmare it all is!.

Strictly speaking he was showing off his knowledge about each specialism when he's only a 6th grade registrar (, nearly a consultant) himself. Not good!.

I hope he will have to eat his words soon!.

Even closer svfarmer to your big day. I do hope Bea and Mira are looking after you all well. Keep safe and well as possible. Xx

🤗🤗🥰

💕😍👍💕🎉Xx

What a great photo, quite something to capture that shot, what a cutie 🥰

Sorry you didn’t have a good rheumy appointment Helen, sounds like we’re in the same boat with our rheumys 😣 oh boy it’s not good enough is it?!

Will catch up soon lovely, it’s all been pretty hectic here.

Big hugs and thanks for sharing your cutie pic to cheer us up 🤗 🥰❤️🌸🌻 🦆 xxx

Hello lovely dianne, thanx for your great message and so pleased you liked the duckling.

I knew my Rheumy experience would make you feel better. They do have attitude in that speciality!. Ive since thought of so much i could have said that would have been better but i don't think it would have changed the outcome. When minds are made up tha6s it!. He's not a consuktant yet but last stage registrar.

Something else lovely to make you feel better. I went to our local vaccination centre this am to get my next jab. I was refused as im not on 20mg Mtx but 17.5mg. They're so strict about it that just 2.5mg has cost me.

Im relieved really as i wasnt sure how my body would react to another one.

Ive been thinking of you so much as you've got such a lot on at the mo. Message me as and when dianne, no rush, hope you'll like your new front garden.

TAKE CARE, having builders in is very stressful.

Thinking of you. Big hugs. Xx🦆💕🦆🌺🌞🥰🤞💐🦆💕🦆🌞🌷Xx

Oh no 🙈 I can’t believe it, so even the dosage of immunosuppressants has a bearing as to whether you get the vaccination or not, honestly I’m just astounded! How does a difference of 2.5mg mean you’re no longer at risk, huh I don’t know what to say I really don’t!

I had to see my urogynae consultant on Saturday, I’ll tell you more in a message when I get longer but he told me I must must be extra careful, covid is still around despite what most the population seem to think now no one cares, he has a friend with autoimmune conditions and she’s now in ITU with covid.

They’re only talking about giving over 65’s and immunocompromised vaccines in the Autumn, it seems crazy if these are the only groups they’ll give the vaccines to when you think how they pushed us all to have it in order to open up society and now nothing, it makes me mad that so many high risk people are being left out! Your life in their hands ( government)😡

Anyway lovely it’s nice to know I’m not alone with the whole rheumy business but no not nice knowing you had a negative dismissive Rheumy, I’d rather some of them had a bit more compassion for us!

Chat soon, at least cutie pic duckling has given us a big smile 😊

Big hugs 🤗 ❤️❤️🌸🦆xxx

Ps. The front path is coming along nicely although the lawn is wrecked, I guess it’ll recover, still the driveway to tidy up and the passage door to do so think it’ll still be a couple of weeks with them here😩 !

Thanx dianne for your lovely message. I had to tell you about both and because of your experiences lovely, you understand so well and to say your not alone.

Its the level of immunosuppression they look at. Mtx is regarded as a lower strength DMARD so you have to be on a higher dose to qualify. Difference for me is 2.5mg. It doesnt make sense as you've always said because we're still at risk because of lupus. I did say that to her but she was adamant i didnt qualify. I should get it in the Autumn with the flu jab.

At least ive found out my immuno-suppression isnt that great which is probably why im trying to develop another AI condition!. 😪

It does make me feel more vulnerable , specially hearing what your urogynae specialist said too. Its all frightening and i will be careful now. Im sorry lovely you've had to see him again. Hope he was helpful.

Glad your front garden is being transformed but all the upheaval is so wearing. No rush to message lovely, take as long as you need. Big hugs. Xx🦆💕🦆🤞🦆💕🦆💐💕🦆💕🌺🦆

P.s, i think you'll like my next pic so see you in a fortnight. 😀

Looking forward to it, I’ve got one to send you, I think you’ll like it.. take care 👍🥰🌸❤️😍💕🦆🌻🦆🌸xxx

Looking forward to seeing it Diane. I'm sure I'll love it. Xx💕🐥💕💐🌺👍💕🐥💕🐥🌷

Keep the faith, maybe your consultant will turn from ugly duckling to swan 🦢

Haha stills, i like it!. He just might as he's last stage registrar before becoming a consultant!. Maybe, he'd lost out on a posting he wanted!. He looked as if he didnt want to be there!. Hope your feeling better. Xx🦆💕🦆🤞

Hi Misty. Lovely photo well deserved the win! Hope your rheumatologist gets their act together! That's no good. Glad you don't have to deal with him for a while. Sending hugs x

Thanx ilovepuppies for your great reply. Glad you liked the duckling. The rheumy's are better in the background looking after me. No bedside manner which emotionally is no good. Im lucky i can ring the Rheumy nurses when needed. Hope your keeping well yourself. Xx🦆💕

Oh my goodness what a beautiful image. The photographer must have had a split second to catch this exact shot. I am so very sorry that you have to have another scan but hopefully it will be done correctly very soon. As for your Rheumatologist, it sucks. I understand how demoralising and frustrating it is when you are not listened to and dismissed. We deserve better. Lots of love and huge Cwtches sent your way xxx

Thank you cecily for your lovely message. I'm waiting to hear also from my Gastro about the blood results too. It's hard waiting all the time and have no idea when I will be re-scanned. Luckily, the pain is better at the mo!. Long may it continue!.

I knew you'd understand about the Rheumy consultation because of your horrid experiences. I so agree with you that we deserve better. It's so depressing that despite better training the attitudes don't change.

How are you and have you made progress on the scanning front yet?.

Sending C witches right back to you and see you in a fortnight. You'll love my next pic. Keep safe lovely and take care in this heat. Xx💕🐥💕

No news about the MRI despite the Consultants secretary calling to say she had notified the booking team that instead of an open scanner I could be put in backwards with my head out 😡. I asked twice if they could do that in 2009 and 2012 and the radiographers refused point blank so I wait for them to battle it out xxx

Yes and while they battle it out cecily you are still suffering. 🤞you hear something soon. Xx🦆💕🦆🤞💕🦆💕🤞💕🦆

Thank you for always being so caring despite what you are going through. It really does mean so much xxx

Thank you so much cecily. Its really made my day and very kind of you to say so. Means a lot. Xx🦆💕🦆🤞💕

❤️ xxx

💕🤗Xx

Great cutie pic! Glad your gastro appointment went well, but not about the previous scan. I always worry about who reads the scan, etc. No excuse for the rheumatologist, but it seems so many are like that. Why are they in the field? My immunologist /allergist appointment was good. I will post on it next. Thank you for another pic that brings happiness. How your next scan gets to what the trouble is soon.

Healing hugs.

Thank you pumpkin so much for your lovely message. Im really pleased your immunology appointment went so well. I know you were worried about it.

I do agree the specialities do vary in attitude . The rheumy's are much tougher and not as nice as immunology are. I missed my immunology consultant so much when he retired and i had to return to rheumatology.

The registrar certainly didnt want to be there when i saw him. His whole demeanour was wrong!. I hope he gets a new posting.

The problem with the first scan was it was done too quickly and not reported on properly!. Thats fault of Radiology!. It should never have been passed!. I don't know when my re-scan will be done.

I will look out for your post pumpkin and do come back in a fortnight as you'll love my next pic.

Take care in this heat. Xx🦆💕🦆🌞🤞💕

This must be THE cutest cutie pic Misty 🤗You've surpassed yourself!! No wonder it won the prize for best pic in the world!! Happy to hear your gastro is going all out to find the cause of your problems. Shame about the scan not being done properly but hey at least u know what to expect next time as you've had it before!! 😉

Rheumys seem to have a certain air of arrogance don't they? I'm not particularly keen on my one but thankfully it's dermy whose in charge of my care 😹Don't take it personally lovely..we have to just dust ourselves off after these kind of appointments n as you say he'll be eating his words when your gastro letter turns up. Hope that happens very soon.

Thanks for the info on the 5th jab experience u had..I've just had my 4th n it was Moderna this time...oh boy I had a reaction to that one..I felt rubbish!!! I was thinking I'm not having another one if them for my 5th!! But now I know that I'm not eligible for it either being on 17.5mg mtx same as you. I'm happy to tell u that I'm now on 4mgs Pred!! Whohoo!! 🙌💜🌈😽😽Xx

Just to make u chuckle. I responded to a post about first time mtx yesterday..I said take it on a day that you can rest..I take mine in a Sunday coz I know I won't have any doctor appts. Well about five minutes after I sent that message my phone rang n it was the dermy clinic..she asked me if I could make it to an appt this coming Sunday!!!! 😹 So I've got my first ever doctors appt on Sunday. They're doing extra clinics bless them..they are working ever so hard 💜🌈😽😽xx

Thanx so much krazykat for your lovely mesdages. Haha!. 😀, you couldnt make it up could you writing about sundays and then getting an appt. You brought yourself luck and you didnt know it!. 😻

I do hope the appt goes well for you. Im sure she will be impressed as i am that you've made it to 4mg. Thats brill achievement kat, it really is . Specially too that you had that jab reaction. 😻

The nurse said the JVCI committee havent yet decided on the criteria for the covid jabs in the autumn so will be interested to see if we still qualify then. I have the flu one ok as i bet you do too. 😻

So pleased you loved the duckling. It really is a beautiful pic. I think you'll like my next one and ill have some news next fortnight. Thanx for your wonderful support krazykat and 🤞sunday goes well. Thank goodness your dermy is in charge of your care. Rheumy's do have attitude definitely. Keep cool and safe. Xx🌈⛱🌈🌞😻🤞

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