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
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