Two Cuties: Hello everyone Meet Lucky and Merrylegs... - LUPUS UK

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Two Cuties

misty14 profile image

Hello everyone

Meet Lucky and Merrylegs, two beautiful Shetland ponies looking their best for the Royal Windsor Horse Show. I love them and i hope you all do too.

Hope you've all enjoyed the Jubilee Celebrations and are as well as possible.

TAKE CARE.

MistyX

P.s, i did get a quick gastro appt and have done bloods today for Auto-immune liver conditions. Its also possible ive got gallstones/ gallbladder problems so may need an MRI . Awaiting decisions /results this week. 🤞

Luckily, my foot injection is still working and my rheumy appt has come thru surprisingly so its not all bad just tough. Thank you all for your lovely support. X

60 Replies

Hello lovely, aren’t they super cute🥰 , I love the name Merrylegs😆When I was about 12 I led a Shetland pony in the pony rides section to help out at a local fete , it was a little tinker and decided to have a lie down half way through a ride with a little one on its back 🙈 it took some coaxing to get it up🙄!

I’m pleased the leg injections are still working, long may that last🤞. I’ve been for my bloods this afternoon too, I had my Rheumy ones done as well even though I feel a bit better than the last two weeks, my joints are still uncomfortable and my hands get so tight and painful.

I hope you enjoyed some jubilee celebrations, the girls had a fabulous time at the Palace concert on Saturday and we enjoyed watching it on the tv. They were so lucky to get tickets!

Fingers crossed you don’t have to wait too long for results and the MRI.🙏

Big hugs💐🌸🥰 🐴 🐴🌸😍🐝🔆xxx

Hello lovely, im so pleased ive brought back some happy childhood memories for you today. Your lovely story has made me smile too . 😀 Sounds like there wonderful characters!.

Im very sorry your still feeling rubbish and hope the bloods might give an answer too. Its sometimes hard to know what the cause is when we take a lot of pills. Ill keep 🤞for you too.

I do think you need to change Rheumy's. Sometimes a fresh mind can do wonders but first i hope you hear from your gastro secretary about an appt because of this awful pain. Its so demoralising being ill all the time and missing out on life. You've been ill solidly for a long time with only a few days respite. Ive really felt it too developing these gallbladder/ liver symptoms . I did admit to my gastro consultant that it was getting me down.

I may hear something by the end of the week so i will mesdage you over the weekend.

Thanx for your lovely , newsy chat dianne. So pleased Sophie and Emma made it to the Jubilee Concert!. What a lovely experience for them. I did see Rod Stewart singing Sweet Caroline. Thought it was lovely.

TAKE CARE , big hugs. Xx🐴💕👍🌺💕

I did get an appointment this morning for my colorectal surgeon on the 5th August and I’ve got my urogynae follow up appointment on the 4th August so that’s good.

I doubt anything will show on my bloods, apart from ANA and Anti Ro and white Cell Count is always on the low side of normal sometimes just out of range everything else is always normal 😏 oh and apart from kidney function that fluctuates. I think my rheumy will discharge me in December, I think they’re desperate to free up appointments and thinks my GP can look after me and he’s at a loss to help me because of my drug intolerances, we’ll see. Maybe you’re right and it’s time for a different rheumy.

I’m not surprise you’re feeing down Helen, it’s never ending isn’t it, I really hope you hear something this week 🙏

Catch up soon lovely… take care

Hugs 🤗 ❤️🌸🥰🐴xxx

I think,that’s chronic illness is unremitting and exhausting.perhaps you need a new rheumatologist.xx

It really is exhausting, I’ve had years of it 😢 so yes maybe it is time 🥰xxx

Im really pleased dianne you've managed to get those important appt's. It helps us have something to hang onto even though it is a wait doesnt it?. If those bloods reveal something then mr rheumy won't discharge you. If they don't then in some ways your gp can look after you as he seems much more supportive as long as a care plan is in place. You must insist on it dianne before you are discharged. Then if things really change he can refer you to another rheumy. I honestly think you've come to end of the road with him and theres nothing more soul destroying seeing a consultant who doesnt want you. Its one less, stressful appt to have to go to!!. Its your decision entirely dianne im just giving you my thoughts garnered from years of experience.

Thank you for your lovely wishes ,i so appreciate it. My spirits are much improved as ive had a couple of better days. Im stressing that what if bloods don't reveal much just like you.? We're emotional wrecks going thru all this!!. 😀

Also , my lovely schoolfriends are coming for tea on sunday and im so thrilled as i havent seen them in 2 and a half years.

I will chat as soon as i can lovely. Im thinking of you lots. Take Care. Xx

Oh yes it might sound odd but it really helps when bloods show something as much as we don’t want them to we do so we can say ‘ that’s why I feel so rough’. I’ve resigned myself to be discharged by him and like you say if things get worse I’ll get referred locally I think. As much as it’s nice to go for a drive I do struggle getting to my rheumy appointment.

That’s so lovely your friends are coming for tea, oh I do hope you can have a good day for it so you can enjoy it.

No rush to reply lovely. Thinking of you too.

❤️🥰🌸🧚‍♀️💐xxx

💐💕👍🌺😍🌻🌷💕🤞Xx

When you’ve been so ill for so long I can’t understand why the Rheumy would discharge you. Sounds a bit irresponsible to me. Surely if he can’t do any more for you he should refer you to somebody who can. I’m SO sorry you’ve been suffering for so long and hope you’ll get the help you so badly need and deserve soon.🙏🏻 Take care. Big hugs. 🤗xxx

Hello 👋 thank you 🙏 I think the problem is that he’s at a loss with me because I’m so intolerant to meds and I never have any raised inflammatory markers when I have blood tests so he says he can’t justify putting me on immunosuppressants, although he did put me on aza 3 years ago based on my symptoms which I was tolerating but was neutropeanic although fine on the lower dose, my GP told me to stop them when I had a spate of infections. My bloods this week were normal, all IG’s normal apart from ESR was 25 ( normal 3-15) and Lymphocytes 1.43 ( normal 1.5-4)

I doubt he’ll bat an eyelid at these they’re not abnormal enough. I’ve felt a bit better this week so probably should’ve had them done at my worst a couple of weeks.

He was very good and attentive when I first saw him but in the last year not so much, I mentioned menopause a year ago and I’ve felt like he’s dismissed all my symptoms and diagnosis since then blaming the last 12 years on menopause 😡 he’s even mentioned panic disorder because I said I always have this spaced out feeling, sometimes I get numbness/ tingling down one side and a blurry eye and wake up in the night occasionally with a fast heart beat/ palpitations, I’ve never had a panic attack in my life so felt upset he mentioned this and antidepressants, I did tell him I wasn’t happy about this!

At the moment I’m taking Arcoxia all the time and low dose steroids for 7 days when I flare. I’ll see what my next appointment brings, I would like to stay in the system.

I don’t know why being ill has to be such hard work😢

Hope you’re feeling less fatigued this week Spotty-ewe🤞🥰🌸🐝🐞🦋💕xx

Oh I see Diane, the results of your bloods and inflammatory markers are rather tricky for him to understand and to deal with, but it is clear you are ill, and obviously not due to the menopause for 12 years, so you’d think he’d persist in getting to the root of the problem or refer you to somebody who can! 🤷🏼‍♀️ I really sympathise because I was very ill (off and on) for 10 years from the age of 15 with a mal-functioning gall bladder which was eventually removed by a surgeon on the Isle of Skye who was determined to help me. I was really at the end of my tether by that time as the pain was excruciating and nothing seemed to shift it at the end.😩 Life just didn’t seem worth living. Having had umpteen barium meal tests, which didn’t show any stones, I was regularly dismissed (probably as a time waster!) as I was young and LOOKED healthy. 🙄 It was only after my GP examined me at home during one of my ‘episodes’ that he referred me to the surgeon on Skye who found when he removed it that it was badly ulcerated. Probably due to Lupus which of course I wasn’t yet diagnosed with. But once recovered from that major op, as it was back then, I felt SO much better. So I truly understand how depressing it is when you have a long-term illness and nobody can get to the bottom of it and relieve your symptoms. I really hope your next appointment brings you more information and help with what you are going through. I’m SO sorry you are suffering so much without the help you need. That’s really tough. I’m thinking of you and will keep you in my prayers. 🙏🏻 Glad you’ve had a little respite the last few days and hope you manage a bit of knitting to distract you too. 🧶 Take care Diane. Loads of hugs. 🤗xxx

Bless you thank you 🙏. Oh it is horrible when you are dismissed and made to feel that you can’t be that ill if nothing shows up . I have off the scale ANA anti centromere that shot up in a short space of time and then positive Anti Ro antibodies. I may ask my GP if I can be seen locally. My rheumy told me when I first saw him that he would monitor me yearly which he did for the first 3 years. It just all feels exhausting. My latest diagnosis is MCTD but he didn’t even bother putting that on my last two clinic letters although he did on the blood form. I’m putting together an album on my phone of photos with the skin things that appear, to show him because they’re not always present when I see him. I’m 61 and this has been going in since I was 42 but life changing in the last 12 years, menopause might’ve been part of it but I don’t think having all these symptoms still are normal at 61 and definitely not menopause apart from the hot flushes maybe.

I’m glad you got sorted in the end, it’s just finding that dr who listens, I thought I had but not now😞.

I have done a little knitting but I’ve just not been able to concentrate since my surgery, I’ve been working on an old crocheted blanket my Nan made over 40years ago that’s got a bit tatty so slowly doing that, not that I can crochet very well, I’m sewing up all the holes… the holes between the patches not ALL the holes😂

Hope you can have a good weekend

Big hugs 🤗 🥰💕🌸xxx

Your care seems to have deteriorated dramatically in recent years despite your ANA and Anti Ro readings and now a new diagnosis of MCTD. 🤷🏼‍♀️ I think as Misty and a few others have suggested it is time for a new Rheumy. But can you request a new one? I know up here you just have to take who you get - you have no say in it - but I’ve been very fortunate to have got a good one since the pandemic started who is an expert in Lupus in children and has been very supportive and thorough with me (maybe because I’m in my 2nd childhood😉) and recalls me every 4 months although it is sometimes 6 months before the appt is allocated. Excellent idea to have an album of skin problems and I expect your phone has the date with them which is very handy as they always ask ‘When did this happen?’ I went through the menopause in my 40s and was finished by 50 (some 17 years ago now) but I was early going through it. But I agree you shouldn’t be having menopause type symptoms at 61, not even hot flushes I wouldn’t have thought. 🤔 You really could do with another opinion and I hope you get one.🙏🏻 A good doctor who will listen and, most importantly, believe you is what is needed. I hope one comes your way very soon.🙏🏻I wasn’t diagnosed with SLE until I was in my late 50s (almost 30 years after having my gall bladder removed) with years of migraines, nausea, aches and pains and fatigue for no known reason. It was my rash that developed as a reaction to a prescribed drug that finally got me diagnosed and treated. It was horrendous but as hubby says it was a blessing in disguise because without it I’d probably still not have been diagnosed.

You working on an old blanket your Nan crocheted 40 years ago rings a bell. Please forgive me if you’ve told me that already. My memory is definitely getting worse. 🤫 It is a lovely project and keeps you close to your Nan as you work on it. 🥰

Hoping you have a lovely weekend too. More hugs 🤗🤗💕😘🫶xx

You’re forgiven 😂 my memory and brain fog have been bad since my surgery, so I may have already told you about the blanket but I can’t remember 😂 That’s interesting about getting a reaction to a drug, I’ve recently become allergic to penicillin after being able to take it all my life, I came out in hives and rashes, it seems odd after being fine with it for so long, the strange thing was that the red patches appeared in the same places that I get them at other random times, all very odd, I’m allergic to trimethoprim too, I might’ve already told you this so you’ll have to forgive me🙄😆!

I had an awful rheumy before this one and asked for a second opinion and found my current one who said I wouldn’t feel better until I was on the right treatment, I reminded him of this at my last appointment! I was told he had a special interest in CTD’s🤷‍♀️ but the awful one did offer to refer me to St. Thomas lupus centre, maybe I should’ve taken him up on it but I wanted to find someone closer to home than London.

More hugs back 🥰🌸💕🦋🐝xx

We’ll always have plenty to tell each other Diane because neither of us can remember if we’ve told it before or heard it before!🤣 Yes, I’m allergic to Trimethoprim too which is why I have a prophylactic of Nitrofurantoin alternated with Cefalexin. Have I told you this before? 🤔It sounds like you’ve been unlucky with your Rheumies. I think St Thomas’s was the centre of excellence for Lupus with Graham Hughes, who discovered sticky blood, at its helm. But I think I’m right in thinking he’s moved to another area of London now - forget the name of it.😒 I wonder if you could ask to be referred to the London Lupus centre now? It might be worth it just to get diagnosed properly and treated, then referred back to local clinic for maintenance. 🤷🏼‍♀️

Whatever happens I wish the very best outcome for you.🙏🏻

I’m enjoying the hugs - here are some more. 🤗🤗🤗😘🫶xx

🤣🤣as long we don’t forget what it is we’ve forgotten of what is we wanted to say 🤔🤪😆

Yes you’re right about possibly being referred to London but I just get the feeling he wouldn’t refer me because I’m not ‘Poorly enough’ with no organ involvement, the fact that I’ve had years of pain, fatigue and migraines, Raynaud's and a host of other symptoms seems to count for little where I can no longer work, I can’t be the wife, mum, Nanna or friend I want and used to be. I guess I’ve got to the point of having to try and accept this is my lot now and let my GP take over, I have to admit I’m not happy about it. I spoke to my rheumy in March and I asked if I could have a 6 month appointment and he said he’ll see me once more in 9 months but only because he knows I’ve had a rotten time of it and there are so many more people waiting to be seen, they’re getting short of appointment slots! So that also made me feel as though I’m not worth it or poorly enough although I do also understand that there are people much much more poorly than me waiting ages to be seen.

I did see a professor Black when I was in my mid 40’s, she was doing a clinic with my then local Rheumy, she said if it became full blown one day she thought it would more likely be Scleroderma than Lupus, my ANA is anti centromere so that makes sense and my now Rheumy said at one point I had CREST limited scleroderma with elements of Sjorgrens and Lupus so then he called it Overlap ctd which actually makes more sense to me than MCTD 🤦‍♀️

So basically he says I have no ‘active’ disease so nothing else can be done for me, but I still feel poorly pretty much all of the time, I’ve forgotten what normal feels like, I get glimmers some days but always short lived.

I guess my stumbling block is being so drug intolerant, I never used to be this bad, I don’t know anyone else that can’t tolerate meds well like me.

Hey ho we battle on the best we can don’t we!

Have more hugs and a good weekend😉🤗 🤗🤗💕🌸🐝🦋xxx

It sounds like there just aren't’ enough appointment slots down your end of the country because your symptoms plus Raynaud’s pretty well match mine. 🥴 But as I mentioned before (I think I did??🤔) the head to foot rash I had as a result of the drug Terbinafine spurred the Dermy and Rheumy into action and I was finally thoroughly tested (blood and biopsy) and diagnosed with SLE. I was on 6 monthly appts for 6-7 years but the new Rheumy has made it 4 months because of my neuropathy which kicked in a few years ago. 😩 It does roll into 6 or more months though, if they are very busy, but I also chase them up when it becomes overdue.It is draining and demoralising feeling so poorly all of the time and my heart goes out to you. I would have thought your drug intolerance is another symptom of your condition and would aid diagnosis. 🤷🏼‍♀️ But hey, what do I know? A lovely old Naturopath who I used to see before he passed away, used to say there was no point in testing me for allergies because with Lupus you can be allergic to dairy one day, wheat the next and nuts the day after that. The point he was making is that Lupus (and probably other AI conditions) make you ultra-sensitive to anything taken by mouth and that this can change very quickly - a bit like your allergy to penicillin when you weren’t at one time. We are VERY complex people if nothing else. But how you can be told you have no active disease when you feel so rotten all the time is a mystery to me.🤷🏼‍♀️ But I wish you all the best Diane. Hang in there and hopefully the right doctor is waiting in the wings ready to listen to you and help you. 🙏🏻 🤞🙏🏻 I hope you manage to enjoy the rest of your weekend. 🤗🤗💕💐🐞🐝🦆🐥xxx

Your rash reminds me of my dear dad, he was diagnosed with full blown SLE at 74, although he had been poorly for some time with no diagnosis, nobody could figure out what was wrong, it was the awful rash from head to toe that got him his diagnosis, he looked like he had been scalded and his skin literally peeled off like a snake, awful 😞 so I can see how horrible that must’ve been for you too😞. I was led to believe you only had active disease if you had raised inflammatory markers and organ involvement, I get overwhelmed with knowing what’s what😫 symptoms change all the time, it seems as soon as one things settles for a while something else flares up, it’s constant.

What you say about the allergies and intolerances is really interesting, almost every drug I take I feel it within 30 minutes, I get very sleepy/drugged feeling which is why I can’t take anything in the morning, even some supplements and I can’t drink alcohol, I’ve never been a big drinker but used to like the occasional drink but there’s no way I can now, not even supplements with ethanol, it’s a real challenge because I think if I could tolerate meds I might feel better and I’d really like to know what it is that actually causes these intolerances.

I’m seriously considering asking my GP to refer me locally again, there is a rheumatologist here that has an interest in Lupus and related CTD’s, I could even see him privately, it might be worth a try.

Anyhoo, enjoy the rest of the weekend, we’re having a quiet one, hope you’re able to relax a bit too and thanks for the email too👍. ❤️🥰❤️Xxx

Sorry for slow reply - Ive been busy supervising hubby going through his wardrobe and drawers to thin out items he never wears anymore. What a job! He’s away for a snooze now. 🤣I’m sorry to hear your poor dad went until 74 before diagnosis. His rash does sound similar to mine although mine didn’t peel off perhaps due to the help of Dermavate and aqueous cream. 🤷‍♀️ I’ll maybe put up a post showing the rash to see if others can relate to it too. 🤔

Your allergies sound as though you are extremely sensitive to all sorts of things. That really is very difficult. Good idea to ask GP for a referral again. Nothing to lose by asking.

Hoping you are enjoying your day Diane. I’ll reply to your e-mail soon. I’m on a decluttering campaign at present.😉 Take care.

🤗😘💖🐏Xxx

Thanks for your newsy email too,🙏 loved the photos😍 decluttering is what we need to do too especially my hubby’s wardrobe too, feels good when it’s all done doesn’t it😃I’ll reply when I get a moment , it’s a busy week, the builders are starting tomorrow 😬 so forgive me if it takes me a little while, love the phone box btw with the royal books very apt! 📚

We’ve had all the grandchildren here today for the first time since my op so I’m whacked out now😴

Hope all goes well for you this week🤞

Take care and will catch up soon

Big hugs 🤗 🥰❤️📚

Hi ExtremeDuvetDaze

I'm about the same age but I don't call them 'hot flush type symptoms' anymore.

I now see as part of a pattern of autonomic dysfunction - which does not stop at Postural tachycardia syndrome (PoTS).

Also now research into Long Covid neurological symptoms is looking at different reasons,some auto-immune, for things like MS-like symptoms (which I think is the basis of some of my numbness, moments of lack of coordination, weird sensations with my eyes)

healthunlocked.com/lupusuk/...

My first rheumy was so dismissive of everything then I saw another rheumy that cares about treating symptoms...and just the strong ANA and the 30 odd symptoms is sufficient to be taken seriously, no continual checking of bloods (with their methods and cut offs varying, and controls not always being reliable - there can be contention over their use - that we don't hear about ).

Maybe it is like this - there are two categories of rheumatologist:

1. Those that put up boundaries if strict criteria not met - like the new EULAR/ACR 2019 standard. This has a greater dependency on blood results as only one clinical criteria can be scored. Makes it easy for the rheumy, the exam can be brief as they are only looking for one thing (4 out of 11 symptom to them no longer applies). Unless blood results are positive, a person can't be diagnosed unless kidneys are involved..

ard.bmj.com/content/78/9/1151

2. Those that want to treat symptoms and only require the strong ANA. (Maybe these ones still think about 4 of 11 also).

I'm not sure if currently there is some sort of flux where particular subsets of patient for some reason or another end up having to migrate to other centres where doctors have the time, and freedom, to treat all patients. It would be interesting to know which places these are.

Thanks so much for this, you make some very interesting points. I’ll definitely watch that tomorrow and take all this on board 👍.

Diane 🌸xxx

Aren’t they adorable 🥰 Lovely names too. Are they miniature Shetland ponies as they look very small?

Pleased to hear that your foot injection is still working and that you have your rheumy appointment.

Hope the results of the tests you have had done come through quickly and have good results. Xx 🐎 🐴

misty14 profile image
misty14 in reply to GloomyEeyore

Thanx ge for your lovely message. I would think they are miniature shetland ponies. Its a pity it doesnt say and im no good at horse breeds!. Ha!. So pleased you like it though. How did your Rheumy appt go?. I do hope you will get better help for that pain. Thank you for your lovely wishes. I may hear something end of the week so ill update at next 'cutie pics'.

I do need help as feel pretty poorly with it. Hope all your family are well . Take care. Xx🐴💕🐴🤞🐴💕🐴🤞🐴💕🐴🤞

GloomyEeyore profile image
GloomyEeyore in reply to misty14

I’m sorry you are feeling so poorly 😢 Hopefully it won’t take too long until you get help.

My rheumy appointment went ok but left me confused. She didn’t think there was hyper mobility although the consultant I saw when she was working on the covid wards did and so did my GP 🫤 Didn’t offer any other help for my back either, just keep taking the painkillers. Did, to my surprise, look at my mouth ulcers, which had flared up badly. Prescription is to be done by my GP and I don’t yet have it 😢

Take care Xx 💐 🌺 🌹 🌸

misty14 profile image
misty14 in reply to GloomyEeyore

Thank you ge for your lovely wishes. Ive had a better day today which gives me heart. So does the thought i might hear something by friday🤞.

Im so sorry that your appt was so unsatisfactory and confusing. Its hard when we don't see the same consultant and get continuity of care.It just goes on and on for us doesnt it?. I just hope your back improves and the ulcers. Pilates exercises really helped my back.

I hope they will still follow you up. Take care. Xx🐴💕🐴🤞🐴💕🐴

Hi misty, really cute tiny ponies 💕💕💕So glad things are moving forward with gastro , i hope you get a scan soon so you know what’s going on 🙏🏼🙏🏼

🤞🏻🤞🏻the injections keep on working.

I hope everything else is good with you and your family xx😘🤗🤗

misty14 profile image
misty14 in reply to weathervane

Thanx weathervane for your lovely mesdage. So glad you liked the ponies. I hope your injection is still working and you've been able to exercise your hip.

Did you watch some of the jubilee celebrations?. Hope you enjoyed it.

I may know something end of the week, whether i need a scan and how all the bloods were. He's looking at my immune system in thorough detail.

I hope your family are doing well , mine are and we've all stayed covid free which is quite an achievement. Thanx for asking.

Do hope you have a lovely weekend. Im having a little tea party with my schoolfriends who ive not seen in 2 and a half years so im really looking forward to it. Keep safe and as well as you can. Xx

weathervane profile image
weathervane in reply to misty14

Thanks for your reply 😀. Im still getting out for walks , but need to be careful as too much leads to a throbbing hip😩I hope you hear something by Friday, waiting for results is the worst .

I went down to get my blood pressure tablets from chemist and they can’t give them to me as have to have a blood test ( I think its just a check up) so annoying as had no warning and ive 3 left , on to gp in morning. I hope i don’t have to wait for results before i get prescription.

I think i told you my husband had his gallbladder out , he recovered very quickly as was keyhole, I know its more complicated with yourself having surgery , if that is the cause of your problem . Your consultant seems to be very careful if checking your immune system in detail .

Im so glad your family are all good, 2 of my sons had covid and my husband months ago with little symptoms, all fully vaccinated.

Im going to a tea party on Saturday for a niece who is getting married in July , it all aunties . Should be good fun , hopefully the weather will be good so can stay out in the garden. Still not sure what to wear to the wedding, i hate dresses 😝

I hope you enjoy your tea party , your last one was cancelled?

Have a lovely weekend with lots of tasty cakes xxx🥰🧁🍩☕️🍰🥛🫖

misty14 profile image
misty14 in reply to weathervane

Thanx Weathervane for your lovely message. That is so annoying about having to have a blood test before you can have more blood pressure pills!!. I guess though its being thorough. I do hope you have it quickly and can have more pills in the meantime.

My mum had her gallbladder out by keyhole like your husband. She did ever so well too. It must be such a relief to be normal again.

Im so wary about ops because of nerve damage. Its happened twice now and i don't want a third!!. Gastro is being thorough as i could have a liver condition as well!.

Hope your son with lupus stayed covid free and you did so well escaping too!.

Thats lovely we're both involved with tea parties this weekend. I do hope the weather is nice and we can both be outside. Lovely your neice is getting married. You must be a lovdly Aunt.

Ive got a special birthday soon and my Aunt didnt even realise!!. Im so excited to see my schoolfriends after so long im like a kid in a sweetshop!!. Ive had a couple of better health days so 🤞it lasts over the weekend. Best birthday present!.

Let me know how you get on and i hope your gp sorts it out for you. Always something for us. Thanx for lovely wishes and look after that hip. Sorry its so troublesome. Have a lovely time. Xx😀💕🌻🤞

weathervane profile image
weathervane in reply to misty14

I got my prescription sorted!!It was all a mixup, had those tests 6 weeks ago , nurse was great and got script signed for me 😀

Best wishes for your birthday tomorrow 🍰🥳🧁🫶🏻❤️

I had a big one this year as well , good bit bigger than yours im sure 🤪.

Have a wonderful day , dont party too much, 🤣 and a birthday lasts all year so lots of parties 😘 xx❤️🤗🤗

misty14 profile image
misty14 in reply to weathervane

Thanx so much weathervane for your lovely birthday wishes. Its great to think i can party all year as i really don't feel well enough at the mo but will be better with treatment. Mine has a 5 in front tomorrow, funny feeling , hope i do feel totally different!!. Ha!.

I hope you had a lovely celebration for yours.

So pleased you've sorted out your prescription and it was a mix up.

Im so looking forward to seeing my friends on Sunday. Mum's just said weather is improving so i hope you have a happy time with lots of 🌞 too.

My next 'cutie pic' is really good and i will have blood results by then too. Keep safe and well. Ive been offered another booster jab. Xx💕🌞🥰🌷

weathervane profile image
weathervane in reply to misty14

🙏🏼🙏🏼🙏🏼🙏🏼🙏🏼 All goes well for you 😘 . I have two afternoon teas to look forward to and another meal out-at a lovely restaurant . Im spacing it out. My birthday was bit more than yours 10 years (ssssh only whisper that bit ). My friend is 2 days younger than me so we are using one of the afternoon teas in July or August, in the Titanic hotel, never been so should be lovely.

Did you see the jubilee episode of eastenders, it was really well done

🤗🤗😘😘💕❤️😀🍰

They are just stunning. Merrylegs what a fabulous name. I am so sorry about your gastro problems. Pre diagnosis I was rushed to A&E twice with severe gut pain, through to my back, bile, acid reflux. I could not stand up straight with pain. They thought it was gallstones but all tests came back negative. Then they tested for celiacs again negative. I had scans, x rays, gastroscopies x3, barium swallow and all that showed up was an ulcerated oesophagus which they said was thrush but again came back negative so they gave up. It recurs from time to time so I feel your pain lovely. I really hope that your investigations are thorough and informed and that your consultant can relieve your pain and discomfort. Please keep us updated xxx

Thanx cecily for your lovely message. I'm so very sorry you've been put thru the mill one way and another with no resolutions. That's awful that you still get it as the pain is so strong.

I've been fretting that the bloods will be negative as our body's do such quirky things with these illnesses. Gallstones do seem to be hard to pin down. My Gastro consultant said its obviously digestive and I've had two better days this week so it does vary!!. It's hard waiting for results but hopefully I'll know something by fri. . I hope your feeling a little better and you've got MRI progress for your knee?.

Glad you liked Merrylegs, I thought it a lovely name too.

Next pic is a fab one and I shall have results by then. Take care. Xx🐴💕

Thank you. I am absolutely shattered today but proud of myself. I managed 22 minutes on the treadmill and 6 minutes on the chair bike. Then I went to pottery and managed on my third attempt to fit my wonky mouse in a wonky doorway, under a wonky arch lol. No no news on the MRI. Two weeks ago the Consultants secretary phoned to say they were not authorising an open scan but they would put me in feet first and leave my head out. Now I have asked twice before if they would do this and been refused which is why I have always had an open scanner. I told her that if it transpires that I turn up and get refused I will make a formal complaint to the Health Board. Awful that you have to say such things isn’t it? But I think I have been very patient. The gastric pain is dreadful. I remember saying to a Haematologist that I keep getting awful pain in the gut, chest then it goes. He said Lupus is the great pretender, it mimics other diseases and when nothing if found poor doctors say there is nothing wrong because they only look for the disease that is being mimicked. Over the past 12 years I have remembered these words and thought how right he was. You take care lovely xxx

Oh cecily, wonky is your wonderful speciality and i hope you will show us when its finished. Made me 😀 tonight, thank you. Sounds so lovely.

Well done with the exercise too. You should be proud of yourself and deserve to be better treated. I hope you won't have to make a formal complaint and you get that scan soon.

Lupus being the great mimic is exactly what im fretting about . Its well known for it and i just hope im not stuck with the awful pain. Its why some doctors don't really want to treat it as its such a difficult illness!.

Next 'cutie pic ' is a really good one and i should have news by then.🤞

Keep well and safe as possible. Xx

I will post a photo. I hate everything I do. I just want to throw it out but it is something to do out of the house. I hope you don’t have to keep suffering. Mine lasted months and then just stopped but it does reoccur from time to time. I look forward to your next post and hope for good news too. Lots of love xxx

Hi Misty, love the pic of the adorable ponies. You are so nice to make us all smile. I am glad your foot is still feeling better. I hope you get some answers from your recent tests. It is so stressful waiting for results. You don't want bad news, but no answers is crazy making. I will see the immunologist soon and wanting to back out. I really am worried that he is going to say, why are you here. This isn't my department. My hope is that even if I am at the wrong place, he might have some thoughts as like we say, new eyes and ears. I know I am not helping myself by being so stressed out about it - much more intestinal problems and joint pain is unrelenting. Doctors have no idea what we put ourselves through worrying about how they will react to us. Enough about me, Keeping good thoughts for you. Have a nice time with your friends. That sounds like good medicine.

Healing hugs.

misty14 profile image
misty14 in reply to Pumpkin2009

Many thanx dear pumpkin for your lovely message. So pleased you liked the ponies. I hope gigi is out of her collar now and recovering well. I do understand how you feel . These appt's are very stressful. As you rightly say they have no idea what we go thru to get there. They don't realise the emotional toll on us if it doesnt go well. It all depends on their personalities to be honest. Hopefully he'll be very nice and if its not his area he will refer you to a colleague , hopefully a Rheumy. If a consultant refers you it will be quicker so could be an added bonus!@Hopefully though it will be fine. When is it?. My first consultant was an immunologist and he changed my life as he was willing to treat me!. 🤞it happens for you.

Ive had two better days this week from gallstone symptoms so im hoping it lasts for the weekend. Your healing hugs are working . 🤞

Ive got a specially lovdly 'cutie pic' lined up and i should have answers then too. Im just glad they help us thru these tough times at the mo.

Keeping 🤞your appt goes well and take care. Sending healing hugs back to you. Xx

Pumpkin2009 profile image
Pumpkin2009 in reply to misty14

Misty, So glad you have had a couple of better days. Can't wait for the next pic and I hope some news that will give you some definitive answers and hope. Thank you for asking about Gigi. She is doing well and we have survived the crisis. She got a new ball to celebrate her 2 week recovery and loves it. I think I can start to relax about her now. I don't have to constantly worry about her jumping or running. I see the immunologist on Monday. I keep telling myself not to expect too much. I also heve to remember doctors are just people and what you said about the personality is so true. I so appreciate your kindness, insight and support. Hope your weekend is great fun!

More healing hugs coming your way.

misty14 profile image
misty14 in reply to Pumpkin2009

Great news about gigi pumpkin. Im so pleased. Its a big worry less isnt it about our furry friends?.GOOD LUCK for Monday , will be thinking of you. Do keep us posted how it goes. Do you make notes?. I do find that helpful.

Have a lovely weekend too ( if you can) and many thanx for all your support. You've been so kind to me.

Sending more thoughtwaves to you. Xx

Oh Misty gallstones vile vile things and dr said worse pain than childbirth . I totally feel for you .. is the pain constant or does it come and go in waves ? Glad you’re having mri as mine was missed on ultra sound initially .

In the UK they have this saying …. 4 F’s for gallstone patients.

Fat , fair , fertile and forty but I wasn’t any of those !

So glad the injection has worked .. you take care and don’t over do it .

Big hugs 🤗 xxxx

Ps love the ponies

misty14 profile image
misty14 in reply to Tiggywoos

Thanx tiggywoos for your lovely message. Im just like you as mine may have been missed by ultrasound in Jan!!. Im waiting to know if an mri is needed and blood results for my liver. Its horrid waiting for results.

I certainly don't want to be stuck with this pain as its awful but does come in waves. May's been awful but last few days have suddenly improved!. Did you have your gallbladder out?.

Im not the stereotype either, but right age and female my gastro said. Something else we ladies have to endure!. Ha!.

Im nearly fifty, not fat or fair!.

We broke the mould!.

Hopefully by end of week ill have some news. Best wishes to you tiggywoos. Xx

Tiggywoos profile image
Tiggywoos in reply to misty14

The pain truly is dreadful isn’t it ! I did have to have my gallbladder out as the stone was so big 🙈. The consultant id been seeing for a year (I had chest pain with my stones ) came and apologised for dismissing me and saying I had indigestion 😡😡.The pain did go afterwards but ironically my liver ALT goes a bit loopy sometimes and got admitted for AI hepatitis last year but sent home!

I’m so glad you will find out as it’s horrid not knowing . The pain is deep and searing isn’t it ? Ironically I found it made me breathless too which the consultant said made no sense !

You take care and keep me posted xxx

Ps: little tip … you may find that buscopan eases the pain. A nurse told me that apparently your lymph nodes can get irritated when your liver isn’t happy and for some reason ibs pills can help xx

Love the 4Fs and what a stereotype! Made me laugh. It is how I feel about my stupid foot. Having the hammertoe from space, neuroma and a bunion forever, everything says you get them from high heels and ill fitting shoes. Well, I never wore high heels or ill fitting shoes. The bunions never bothered me and still don't. Then the neuroma showed up and then the hammertoe. The hammertoe is the culprit and caused the foot bone break. So go figure.Thanks again for making me laugh.

Healing hugs.

Hammer 🔨 toe what an awful name wonder if it’s because it feels like someone is hammering your toe 😣! Yes I’ve always worn decent shoes and trainers 👟too so blooming annoying when you get 🦶 problems !

Foot bone 🦴 break sounds horrid . You take care xxx

misty14 profile image
misty14 in reply to Pumpkin2009

Im the same pumpkin and tiggywoos with my feet. Got hammer toes and a bunion because of the inflammation and had bone breaks because of the steroids and a high arch. Ive never worn high heels and always worn sensible shoes. Gone into trainers now on a podiatrist's advice. It seems so unfair on us doesnt it when we suffer and its not our fault?. Xx

Pumpkin2009 profile image
Pumpkin2009 in reply to misty14

For the longest time, my feet weren't a problem and then very quickly everything changed. So strange! At least we are in good company here.

Healing hugs.

These little Shetland ponies are just 2 super cuties , they are so tiny.

Really pleased your foot injection is giving you some relief but so sorry about your ongoing gastro symptoms - hope you get some answers soon x.

misty14 profile image
misty14 in reply to svfarmer

Thanx so much svfarmer for your lovely wishes. I hope you've recovered from Center Parcs holiday.I will have news in time for next 'cutie pic' which i know you will like. Its a really good one.

Hope your wedding arrangements are going well.

Schoolfriends who ive not seen for 2 +years are coming to a birthday tea party this weekend at mine. Im so thrilled about it and can't wait to see them. Lots to catch up on!.

Keep well, safe and have a lovely weekend yourself. Xx🐴💕🐴🤞🐴💕🐴

svfarmer profile image
svfarmer in reply to misty14

How lovely hope you have the best weekend ❤️

Only 5 weeks to our wedding now , it’s flying past xxx

Pumpkin2009 profile image
Pumpkin2009 in reply to svfarmer

Looking forward to all your wedding news!

Healing and happy hugs!

misty14 profile image
misty14 in reply to svfarmer

Thanks so much svfarmer for your good wishes. It's frightening how fast summer is going. I will keep 🤞 you get gorgeous , sunny weather. Looking forward to hearing all about it. Take Care and Keep Well. Xx

Late as usual, but better late than never 😉, and I’m so pleased I did check in and see these gorgeous wee ponies. 🥰 Such lovely names too. Sheer delight, thank you Misty. Good to hear you’ve had a couple of better days and hoping you’ll still be feeling good enough to enjoy your Sunday lunch with your pals. That will be wonderful. I hope you get the blood results soon and find out whether you have gall stones, a mal-functioning gall bladder (like I did) or some sort of AI related liver problem. All very painful which only naturally gets you down, so I hope it is diagnosed and treated soon. 🙏🏻 Love and hugs 💕🤗xxx

Hi Misty - I love the names. Glad to hear foot injection is still working and your rheumy appt has come through. All the best with gastro appt follow up🙏xx

Hi striated, glad you liked the ponies. Hope your better on hcq now. Thanx for your good wishes. Its lovely having a normal foot at last. I will have gastro news next pic and its rather a gorgeous one so keep looking.

Take care and keep safe. Xx💕🐴💕🤞

They are adorable! Can’t believe how small these ponies are. 😘😘

🤗♥️🥰🙏🕊

misty14 profile image
misty14 in reply to honeybug

🦋💕🌺🤗🌻🌞💕Xx

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