Hello everyone,
Just thought I'd post this week's cute pic of a leopard making sure her cub is sheltered. Hope you like it.
Keep well as possible and safe.
MistyX
Carrying on the cuteness: Hello everyone, Just... - LUPUS UK
Carrying on the cuteness
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misty14
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Really cute photo misty 😀😀😀xx
Glad you like it weathervane. I've just had a call from my hospital's endoscopy Unit. A cancellation on Sun at 8am?. Ive taken it so it's all gogo with the prep and change of diet beforehand. Did you do this?. I'm having covid test tomorrow too. Amazing what can be organised so fast. Such a relief as bowel has flared again. Hope your coping and get a breakthru too. Cancellations do work!. Xx
Really pleased you got your appointment at last 😀😀 . The prep is not pleasant, the drink is unpleasant and its effects means you definitely can’t leave the house. I hope you get through it ok , i had the analgesic before hand , but not sure if it made a difference, though more uncomfortable than painful. It also took a week for system to recover afterwards , but that might just be me 🙄. Good luck, let us know how you get on xxxxx🤗🤗
Thanks for your advice weathervane. I'm dreading it but it's got to be done. Which analgesia did you have?. At least this way, I've not long to think about it and it gets done and then i'm out the other side. Thanks for your good wishes. Will let you know how i get on. best wishes Xx
I don’t know what analgesia i was given!! It will be great when it all over and done with , i think the worst bit is the prep you have to drink before hand. Wear loose clothes as your tummy might feel a bit tender afterwards. Best wishes , do let us know how you get on afterwards xxxx
Thanks weathervane for your advice and good wishes. I agree the prep is the worst and it's how it makes you feel. It's brill timing as bowel is flaring again!. At least it will be over soon. The residue diet is very different too. I will let you know how it goes. Take care yourself and I hope the rest of this week is good for you. Xx
Lovely photo 😍 I’m so pleased you’ve got Your appointment at last... I do hope it goes well and you get some answers, I’ll be thinking of you , big hugs Misty 🤗 🥰😘💕xxx
Thanks so much diane, I've sent you a private email. No rush to reply at all. TAKE CARE Xx
Beautiful pic misty. 🙂
Glad you like it freckle. How are you getting on?. Xx
Ummm. 🙂😳🙃
💕 In a bit of a kerfuffle - I'll speak with good manners soon.
Sorry that you are freckle in a kerfuffle!. I am too as building up to a colonoscopy on sun so starting the prep build up now!. Dread that don't we?. So, my dear no rush to reply. Just hope you restore harmony soon. TAKE CAREXx😊💕Xx
How are you going Misty ? Sounds like you're hospitals are functional at least ? Have they fixed that painful appendage yet ?
Melbourne's in a pretty hard and long lockdown in order to try and eliminate a covid outbreak, so I'm in a holding pattern for a thingi- ( hoping just a polyp ) bleeding in my intestine to be removed. The first of two procedures in this neck of the woods, - also bleeding from a small patch of vasculitis in another intenstinal section. At least I now know why I've been anaemic for years on end. One of those situations where Doctors have assumed the anaemia was just a weird lupus / renal thing to brush off - so I had to battle for another delayed diagnosis 😖. The vasculitis probably does qualify as weird lupus thing. Of course it would be much better if they went to the effort to find out what causes our various weirdnessess 😡 instead of just assuming that we should just suffer through it all because we have a chronic illness.
Still getting iron infusions to keep me upright so other than becoming cross eyed with frustration I feel fairly well.
Also feeling a little vivid 😳 on reduced prednisolone. I'm not sure yet wether this is a good thing. The world seems a little freakier with a clear head.
Everything's a bit eerie here, as rural Victorians have just been let out of stay at home restructions - but still can't really meet up or congregate easily - and businesses are very slow in opening - and these 😷 things are mandatory. We're all looking a bit abstact with lack of proffessional hair cuts and face masks. I never thought I'd wear twirled up pig tails again at my age.
- also just spent the better part of the month helping my parents move home - and helping in the transition of my disabled brother to live independently - ( under covid restrictions ) hence the kerfuffle. Just sitting in a quiet pause - hoping things will stay settled.
What's happening at youre end ?
💕💜💕 xox
Hello dear freckle, wow what a lot you've had to cope with and still are! That's a huge move for your parents and brother to live independently specially in these challenging covid times!. I do hope it works out well for you all.
Thats awful about your intestine bleeding, do hope its not serious because of the time delay there's been in investigating it!. That's shocking freckle. I agree vasculitis is rare but doctors should be more willing to listen and learn and investigate but instead they can treat us so badly with their attitudes. You've had this anaemia for years and its just been left. Best of luck when you have the pfocedure freckle, keep me posted.
Covid wise you describe what its like here too, an eerie feeling wondering if we're headed into a second wave of cases!. Im in an area that didn't have many in March but we wonder if we'll be lucky again and its a frightening thought!.
I haven't had my op as like you I was put in the shielded category so all treatment has stopped!. I dont know whdn it could be now and I'm waiting for injections I can't have either!. Its tough as I'm in a lot of pain and bden like this a long time now!.
I've had my colonoscopy thanks to a cancellation and luckily bowel was clear unlike yours!. Im very grateful but awaiting biopsy resukts after positive stool tests . Im recoverinv from the prep, it was tough this time but rather proves inflammatory bowel somehow as ache so much afterwards and feel very tired and poorly!. I have a diagnosis of colitis and this is to see if its progressed!.
So kind of you to ask about everything. Mum has improved so things are less stressful here although I'm watching both of them in this covid time as it has affected them!.
TAKE CARE and good luck for that procedure, thinking of you and keep me posted. Keep well and safeXx
Ah, Misty. I'm sorry you're still enduring a lot of pain......and without any propper treatment for all this time 😳. - and now you're having inflamed bowel problems. Understandable that you weren't thrilled with having a colonoscopy. I hope it wasn't too horrific and you're recovering.
Great to hear you're mums improved though - some good news at least.
My parents have been a little too oblivious regarding covid - which has been a bit of a nightmare. Had one relative drop in with full symptoms.....I wasn't pleased. Not always an easy family to care for.
I'm really hoping you all dodge that second wave over there. You look after yourself over there.
Ditto to you - keep us posted and stay well and safe.
💕💜💕xox
Hello dear freckle, thank you for your lovely reply. Just wondering how you all are?. How selfish and unbelievable your family member bringing covid symptoms to your family!. Hope to goodness it wasnt!. As your famiky are very vuknersble, specially your brother. Hope they've all settled after the big move.
Have you had that importsnt procedure yet?. Do.hope so and your recovering.
I had good news on my biopsies so am left feeling ill and confused!. It took me a week to get over the bowel prep. Its a big relief its basically fine i need to sort out why i had high stool test for inflammation when they say its ibs. My gp is backing me needing these answers and says he'll write a letter to them if i dont get anywhere. Ive requested a tel appt as they also wanted to discharge me!. If i dont hear by weds it will be a week so can ask gp to write. I was pleased he wanted to be so supportive!.
Hope your all keeping safe and well as possible. Hows your area for cases. Ours luckily is low still but cant have my pain trestments which is hard!.
Enough of my rambles, thinking of you lots freckle and just take care. No.rush to reply. Lots of Xx.
Hi Misty,
I'm in another kerfuffle. I have a date for my intestinal endoscope this Friday - but getting in and out of the tail end of a covid second wave city and into a hospital right in the heart of it is astonishingly complex. Lots of paperwork, and trying to figure out how to get though randomly blocked off roads, finding clean hotels etc.
I'm sorry you've hit the frustrating and un - nerving: - no answer wall - after that hair raising colonoscopy - along with the misery of being turfed out of further investigations. How history repeats for us all - but upsettingly for you right now. I hope you're holding up.
I remember a colonoscopy I had when I was flaring very badly, along with a fever. I almost called an ambulance it was so painful. Back then my Kidneys were failing - which was one explanation for the gut pain, but I also wasn't producing enough digestive enzyme due to an inflamed pancreas or bile duct ??? not sure to this day what gibblet ? probably the pancreas- given some old pathology notes. The digestive emzyme medication ( Creon ) as recommended by Cuttysark - kept me going until a few years later they tested my digestive emzyme levels and saw I wasn't producing much of it. Hooray, the Doctors no longer wrote that I was sugar pilling myself. A rheumatologist recently theorized this may have been due to Sjrogrens.
I'm very glad you have a good GP on you're side. I think that's the most important thing to getting the answers you need. Good dedicated advocacy. I hope you're holding on and remaining sane amid all this.
They will find an answer.
xox 💕💜💕
Dear freckle, i think your kerfuffle is catching again. ( love the word). I will think of you on friday and just hope that your covid plans work well and you come thru it ok. What an added worry this covid is for us when just dealing with our medics and illnesses was enough!.
You've made me feel so much better re colonoscopy result because of what happened to you. Thank you so much. Im very lucky and grateful that my gp does want to hellp.and be my advocate. He has changed aftef i lost my temper with him and said he didnt want me moving doctor's.
You wont believe i was put in a spin today because just looking on my repeat prescriotion form suddenly saw a new drug on there and its for prevention of blood clots. No phone call from the surgery but it looks like i may have progress at last for my op. Only been 10 months on the quick list and id written it off because of this second wave!. Scary it all is.
TAKE CARE and GOOD LUCK. Kerping fingers crossed for you. Xx
Thankyou Misty. 🙂🙂🙂
Glad to hear you've made some progress with the blood thinners and you're Doctor 😁 -
Sometimes loosing you're lolly is the best tool with Doctors - and in other spheres in life, especially if it's random and out of character - I'm glad it worked !!!
I'll let you know how things go when I get back from this alternate universe I'm travelling into.
💕💜💕xox
Dearest freckle, ive thought of you a lot yesterday and i hope you've come thru the procedure ok and are recovering. I do hope your covid plans went well too. This covid world is just so different, getting my flu jsb today was surreal!. Your so right that we're inhabiting this parallel universe!.
Just to tell you ive managed to secure an appt with this gastro to explain things better. Gp intervention not needed but i do so agree re losing temper occasionally can be very effective if its a sudden change of temperment! Ive only lost my wrag twice in 34 years to two gp's. Not bad eh!.
Ive also discovered the blood thinning drug suddenly appearing on my notes was a mistake and its been rectified. Very disappointed that still no progress to op and luckily for the moment not a lot of new cases here. Hows your area?. Glad i noticed a serious mistske though which proves we must check our repeat precscriptions!. The receptionist has had to put an error code on my file and tell the doctor!. I bet this has happened to you.
TAKE CARE, rest and recover. No.rush to reply. Thinking of you. Xx♥️Xx
💕
xox
I'll reply soon.
NO RUSH dear freckle, you just recover. Thinking of you. ♥️
Hi Misty,
You bet paperwork mistakes have happened. A major one is the local GP practice still trying to catch up with basic facts about my health after not bothering to source my medical record.......ten years ago ! I'm still surprising them with stuff they should have known.
No such thing as an error code here - that would make our entire medical system collapse. I've learnt most mistakes here are dealt with verbally and go un - recorded, but it makes for a slightly feral and colorful medical culture. It kind of stresses the importance of having a GP that's very assertive and willing to advocate - or rather - be willing to be yelled at - and be able to yell back at times. I don't know what it is about my GP, but he manages to somehow frighten specialists into doing their jobs. I heard back from one haggard specialist who was late with a report - that "I can trust my GP".
I'm sorry you're not able to have you're operation yet. You've been living with a lot of pain for so long - it must be driving you utterly bonkers. I hope they're at least giving you very nice pain killers. I can almost guarantee when you do have the op it will be done in fast motion.
For me - having a proceedure - in one of the hardest lock -down cities on the planet was way more hair raising than I expected. The medical staff are working so terrifyingly fast - at least for my brain speed - either trying to catch up with a backlog ? - making the most of a brief window of opportunity to do operations ? - or just plain trying to get everyone out of a covid petri dish hospital environment as quickly as possible - ( a bad outbreak at this hospital at the start of our second wave) The anaestatists decided on the spot while I was lying on the table - just before being rendered un-conscious - whether to give sedation of a general anaesthetic, and when I was very quickly turfed out the other end- they mixed another poor man's results with mine to take away with me. These were color images of the endoscopy - and for about a day I thought I had a very serious case of uncontrolled intestinal cancer - until I saw this poor young guy's name in small print up the top. Mine were the good images.
When I spoke to the surgeon about 5 days later - at 9.30 pm at night - the end of his work day after getting up pre dawn for work - he said the polyp/tumor was benign - but he was unable to get it all. One bonus - it was bleeding quite vigorously - so hopefully - no more chronic anaemia and breaking into a sweat each time I eat something. He's thought the intestinal vasculitis probably isn't really contributing to the bleeding that much - so I'll see what happens. I'm actually feeling a lot stronger than I have in ages.
I had to stop half way home and stay in a hotel to rest for a few days - I heard a lot of misery and distress behind the walls - a lot of people teetering on the edge after such a long lock down. One pizza shop owner had a melt down in my direction about probably loosing his business.
I'm sorry to see on the news that Britain is hitting a second wave. Geography has helped us avoid the worst of our second hit. I hope you're address continues to keep you safe too.
I see from some posts that Rheumatologists have somewhat abandoned ship ? Is this true ??!?
xoxoxox
Hello dear freckle, what a horrid experience you had with your op but thank goodness ypur polyp/ tumor was benign unlike the previous guys notes you had. You will wonder how you've coped and might feel livelier due to no anaemia. Tricky he couldnt remove it all!. What a worrying time you've had but thank goodness you have a good gp like mine who will advocate for you. Im relieved ive got this now as we need it.
Our region sounds very like yours as few cases touch wood at the mo.but it could change quickly. Our hospital suddenly found they'd got 7 patients with covid as they test them weekly. They've been isolated but it doesnt give confiddnce. Its scary really wondering whats best to do. The tier system is still confusing that we've now got. Im despairing why im not getting my trestment when cases are low here and hospitals are supposed to be running more normally.
Ifeel horrid freckle, partly because of pain and partly due to side effects of painkillers that dont give much relief. Its really affecting me now. I think our gsstro dept is imploding as the consuktsnt who ordered my colonoscopy has now left and my tel appt is with his registrar. Not sure about it but he might be high grade and i need some input so keeping an open mind. Hes the second consuktant to go in as many months which isnt good. Rheumy dept has been good for me and have tel appt next week with him. Also not been well since flu jab so hoping help for that.
I wish i could have one procedure done as it would help me cope. Its hard to keep going.
Thst was shocking of your gp surgery not getting your notes. These fundamentsl errors are so hard to rectify and damn you for such a long time.
I hope your family are safe and well and your recovering well after such an ordeal. Thinking of you and hope your taking care. No rush to reply.
Hi Misty,
Things are so different over there - I don't really feel qualified speak . so - polar oposite here ( trauma from protected shut down, especially with young adults )
I'm sorry that you're - to use a local term, - 'off you're face' with medications. At least it might be protecting you from some of the more extreme emotions of these times if nothing else. I'm tapering off pred and starting to feel some fatigue and pain myself.
If we had seven cases of covid in our hospital , (it would be closed) and I'd be closing the shutters and running for the proverbial hills. Please don't be throwing in the towel - re: keeping yourself safe. Its hard not burn out and just say - bugger it.
I really found out how difficult infection control is when I tried to change over clothes and pretty much everything I'd travelled with when I came home. Its beyond my IQ. I'm still staring 😳 at a half unpacked suitcase to wash and disinfect.
Even now after I tested covid negative - I have to wait two weeks before I can enter the local GP practice because manual infection control is almost beyond their IQ too. - (was chatting to a receptionist at this practice )
For want of a more delecate way of saying it - I'm sorry things are so effing' horrible there Hang in there. Don't forget, one day things will suddenly get better.
💕💜💕xox
Hello dear freckle.thank you for your lovely message.
Thats tough in these times having to taper steroids. Hope your doing the slowest way possible 0.5mg a month im allowed to do. Ive stayed on 5.5 mg for months now not getting my op. Its something i need to discuss with my Rheumy next week. What dose are you on?. What do you need to get to?. Do hope you dont feel too much differdnce and your new dose stabilises soon.
Just want to reassure you that im not throwing in the towel re the covid restrictions. I do agree it would be easy to. We're all confused and tired of it all now! The cases at the hospital have made us be extra careful again which is wearing!. Your looking at your suitcase still after your trip because its added effort to sort out. Thats the problem, nothing is simple and easy anymore and it all adds up. Im only going out once a week as want to keep well in case i hear anything from the hospital!. Im watching the phone and post all the time as one day i know it will change.
TAKE CARE, thinking of you. Xx🤞👋💐💞👋
Hi Misty,
Thanks for you're lovely reply. It seems to be a slightly over the top - ?strange trend here from Rheumatologists to try an wean pretty much everybody and their dog off Prednisolone - and up alternative medictions due to long term side effects pred can cause. I have a neighbour with RA currently being tortured by having his pred taken away. Being on the stuff for 35 odd years without many problems - and always being told its ' the drug I must always take to stay healthy ' I'm a little edgy about the idea, especially when my Rheumatologist wouldnt direct to the American research she was basing her decision on. 😡 - to cut a long story short, I did slowly reduce - from 6mg to 4, felt physically and mentally awful - became chronically fatigued, - even with extra micophenolate back up - felt I was flaring a bit - so now I've settled on 5mg and I'm beggining to feel well again. In truth I should have had my dose increaaced for my operation - so it was all a bit of a mess.
Thankyou for sharing that reduction tequnique 🙂 - I wasn' t aware of it. Here it was a daily alternation of half a mg over a week - e.g. alternate 5.5mg then 5.0 - then drop to 5.0 then alternate to 5.0 and 4.5. etc. If there's ever a next time - I'll do what you suggested.
My renal specialist was against the reduction - and as terrifying an individual she is - I think she has a better understanding of how agressive my lupus an get. I tried to explain the damage done to my autonomic system, peripheral nerve damage / POTs etc. to my Rheumatologist - and she sort screwed up her face as If I didnt know what I was talking about - despite telling her of the two other specialists diagnosis of this...... you could tell she thought it was all anxiety and fibro. As lovely as she is - she's a protypical Rheumy with their own axes to grind - so I think I'll stick with abusive nephrologists. 🙃
I had to have a covid test and self isolate for a week before I could enter the hospital here. I wasn't allowed to use public transport - or 'amenities ' so it was an interesting 370km drive for the procedure. I had to ' powder my nose ' in natural habitats and slipped in the mud - so had the operation somewhat covered in mud 😁. They were very polite.
On a slightly darker note, I found an elderly aunt who's been living alone in utter mess and distress as she'd slipped into the start of mild denentia during lock down. I've shopped and kept her company on and off - along with some others ............waiting for her not so great sons to do something 😡😡😡.....still waiting.
Now I'm just watching the news of whats happening over there. Not exactly happy times.
You take care over there. Very much thinking of you too.
💕💜💕💜💕xox
Hi freckle
Thanks for your lovely message and sorry about what you went thru to get that op. You did well to get to 4 mg steroids and I can relate to how awful it can make you feel . I'm the same with 5 mg . I've just spoken to my Rheumy who said a flu jab flare that I've got can last 4-6 weeks and gradually improve. He wants me to reduce to 5 mg when I'm better and no extra help unlike you who had an increased MMF dose. He doesn't want the MTX to be increased so wants it both ways compared to your Rheumy over there. I think they are being extra covid cautious in our treatment. I'm on 5.5 mg which he said was a safer dose. I'm really not sure if I can do it freckle. I can relate also to doctors quickly going down route of Fibro and anxiety. I've got an element of this with my Gastro. Talking to a registrar next week so I don't hold out much help. They roll out IBS when they don't know!. How was your intestinal Vasculitis diagnosed?. It really is a minefield isn't it?. Do hope you continue to improve on the 5 mg.
I'm also trying to get the new 300 mg HQC tablet to be prescribed. Even emailed the drugs company whose willing to work with my surgery prescribers. I have given them all this info and I'm about to find out if they've done anything!. I don't wonder we get worn out .
So sorry about your Aunt, that's very sad freckle. Hope you can make those sons do something. Families hey!.
Still no op date but have got date for leg injections so that's helpful progress. Just hoping it will happen. Our cases are still low compared to other areas but it can change so fast!. It's scary really so we've stayed in as its half term!.
Do take care too freckle and keep well and as safe as possible. Xx💕😊💕😊💕
You stay safe too Misty.
I'll keep an eye out for you at the site.
💕💜💕💜💕💜💕💜xox
Dear freckle, i will pm you soon. Keep safe , sane and as well as possible. We've got another lockdown and panic buying going on again!. Im going to try to keep up my cute pic thru out winter so will pop up weekly on forum. Always lovely to see you. Xx🤗💞🤗
Dont worry about my thought bubble. You look after yourself over there.
I'll look out for you're posts 💜
Very much thinking of you !!!
Ahh .. taking care of her baby. Amazing, isn’t it?
😘k
Now I think that is the cutest picture you’ve posted to date - adorable 🥰 Thankyou for sharing xx
Lovely pic misty 👍🙏x
It’s beautiful. Did you paint it ? I have a really pretty paint with diamonds to start . If I can ever get me time . 😆😂🤣. That’s a total joke 😡
Thanks for your reply leeniebeanie, the pic is a photo from a daily paper.glad you liked it.
I do hope you have a go with your diamond paint!. Sounds lovely but I know what you mean about not having time to do it!. I thought I'd have lots of time in lockdown for my hobbies and it just hasn't happened !. Just too busy doing other things!. Keep well and safe. Xx😊
Adorable picture Misty.🥰 Glad to hear you’ve been offered a cancellation for your endoscopy. 👍🏻 I’ll be thinking of you on Sunday and hoping all goes well. 🙏🏻🤗😘
Thanks so much spotty, glad you like the pic. Watch out for a private email coming your way. Xx
I’ll look forward to it Misty. Take care and take your time. 🤗😘💕
Just done it spotty. Xx
Just received it. 👍🏻👍🏻🤗😘x
It is gorgeous Misty 😍xx
Is that your wedding photo Cecily? If so, you are absolutely stunning 😍and hubby looks pretty good too😉! 🤗😘
It is indeed, we got married in Angle, Pembrokeshire, a very small affair with only 25 guests as I have no family and sadly at that time my hubby had not been able to locate his siblings after separation in care. It was the happiest day of my life xxx
Its a beautiful pic cecily. Hope your feeling a tiny bit better. Sorry your having so many health problems at the mo. keep safe. Xx
Thank you. Yes my fever has dropped and I certainly am spending less time in the loo. Every little helps xxx
Oh phew cecily, so pleased your improving. Hope it lasts for you. Take care and be safe. Xx😊💕😊
Thank you Misty you take care too xx
Thank you cecily. I'll try!. Xx😊Xx
You both look radiant! Such a happy couple! So lovely to see. 😍🥰🤗😘
That is so kind of you thank you xxx
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