ExtremeDuvetDaze5 months ago

Aww that’s cute, its a long way down for them isn’t it ?! I love giraffe’s, they’re so graceful 😍

I’m pleased to hear you’ve finally heard from your gastro consultant, I hope you get some answers when you see him on the 13th, you want some answers don’t you? Fingers and everything crossed 🤞

Thanks for your messages lovely, will catch up soon. My Gp’s written a neuro referral letter today and I’ve decided to see him privately as I can’t wait 6 months or more, at least I’ve had the MRI already and they’ll get the other scans ready to compare. I left a message for the Rheumy sec asking for the reports of the old scans and asking if rheumy has replied to my GP yet, we’ll see if I actually hear anything!

Take care, catch up again soon

Big Hugs 🤗 🥰💕🌸🌈💐xxx

misty14 in reply to ExtremeDuvetDaze5 months ago

Thanx so much dianne for your lovely mesdages. Will have a listen today. I love giraffes too. I think they're so unique and yes definitely graceful. It must be strange being so tall!.

You are so right lovely, i need to know why this pain is happening and what i can do about it!. Have had a tiny improvement on milk so will persevere with different ones.

Im writing good notes for the 13th.!.

Good for you for going privately and i hope you get an appt soon. You've been busy getting it all tied up and i hope you hear from rheumy sec soon but i won't hold my breath like you?. You must feel so relieved to be doing this quickly.

Thank you for your lovely wishes, chat again soon. Xx🤞💕🤞🙏🤞💕🤞🙏💕

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KnitSewPurl5 months ago

Hi Misty glad to hear all is ok with your biliary organs. that is good news. Hope all goes well with your appointment with your consultant in Sept x

misty14 in reply to KnitSewPurl5 months ago

Thanx so much knitsewpurl for your good wishes for my appt.Its very kind of you. I just need to know what this awful pain is and get treatment for it. I will update when ive been. Have you had these problems?. I hope you are keeping well yourself. Xx🤞💕🤞

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CecilyParsley5 months ago

Hi Misty they are such beautiful animals thank you for sharing. I feel for you regarding the quest for the cause of the gastro pain. If you remember I went through similar with doctors convinced it was gallstones, gallbladder issues, liver problems, celiacs disease. The tests all came back negative. The Gastroenterologist queried CREST eventually but my Rheumy dismissed it. After a year of suffering badly it just went. I still get bouts of it but nowhere near as bad as it was. At times U could not stand up straight because of the gut pain. I understand why People say that it is good news that your gallbladder is ok but all I felt was despair, if not that then what? I truly hope the Gastroenterologist can help you lovely xxx

misty14 in reply to CecilyParsley5 months ago

Thanx so much cecily for your lovely mesdage. Ive been thinking of you as i remembered you'd gone thru similar. I do feel despair at no easy answers and the PAIN is just awful. It can't be nothing im thinking as it follows a pattern!. Im hoping my gastro can come up with a diagnosis and treatment plan. He's very openminded and knows me well!.

Im sorry you suffered for such a long time but it did just go!. That gives me heart as mine's been going on since Jan now!. It does go for me and then suddenly returns and i don't know why!. Its awful how our body's can torture us for no good reason.

I'm so glad Dylan is recovering from an op. He's such a fighter isnt he, like his mummy?. What a rollercoaster you've been on with him!.

Have a lovely weekend and there will be more updates later. Xx🤞💕🤞🙏💕🤞💕

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CecilyParsley in reply to misty145 months ago

I so understand that despair. I couldn’t eat, couldn’t stand straight for the pain, had a high temperature, nausea, awful wind, diarrhea and constipation, acid reflux and no known cause. When the choking started I was referred back to the Gastroenterologist which was when they noted the rashes, the tight tendons etc and said CREST. Like the gut issues the chocking cones and goes as does the severe tightness of my tendons and the rashes. I have not had a plausible explanation for any of them but I sincerely hope that your Consultant looks after you properly lovely xxx

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misty14 in reply to CecilyParsley5 months ago

That was just so awful for you cecily. It is having such awful symptoms and no obvious cause which is the worst.i can't believe that they couldnt tbh cecily. I don't think they wanted to enough for you. Ive got quite a few of those symptoms and tightened tendons but this biliary pain is the worst pain ive had and i have a lot of pain experience now!!.

Im very hopeful of an explanation and help as my gastro is well trusted, knows me well and takes me seriously. He's also got an open mind thankfully and there are symptoms he doesnt know about which could make a difference!. Its hope that keeps us going .

Have a lovely weekend with Dylan. Xx🦒💕🦒🤞🤞💕🤞🦒🤞💕🤞🦒

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CecilyParsley in reply to misty145 months ago

I think it is a large part of the problem for me Misty. In fairness the gastroenterologist was absolutely lovely and said why aren’t you getting more help? Why haven’t you got a mobility scooter? He said I can only suggest CREST to your Rheumatologist but if you get no help come back. I had ct, ultrasound, x rays, barium swallow,three gastroscopies all revealed nothing but what they thought was bleeding thrush. They took biopsies but they were negative so I was discharged. If you have a good, interested Consultant I am sure they can help you. We all need hope. We will have the best weekend. Dylan woke up this morning with more energy than he has had for months. Best of all he had his first solid 💩 and celebrated with his usual happy bark and a little dance. We were laughing and crying at the same time. Our boy is showing us that he is doing well and that is worth all the money in the world. I hope that your pain eases lovely and that you have a good weekend too xxx

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misty14 in reply to CecilyParsley5 months ago

Thats wonderful news about Dylan's recovery . He's such a lovely fighter!. I should think you were both laughing and crying. So good to let emotions out!. I'm so relieved for you both. You've had such an awful year!. I couldnt agree more about the benefits of an interested, kind consultant!. Specially gastros as they can be so tough. Im sure yours felt so frustrated he couldnt find much wrong despite your obvious symptoms and suffering. You'd been thru so many tests.

There's another test i might have and like you i've had a recent gastroscopy that was clear!. Its such a stubborn , awful mystery that i hope he can solve. Its no fun being such a difficult case!.

Thank you for all your support , i really do appreciate it.

A big pat for Dylan from me and i hope your enjoying your weekend. We might get more rain at last. Xx🐶💕🤞☔💕🤞🙏

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CecilyParsley in reply to misty145 months ago

Thank you so much Misty. Yes a rotten year but the positives are I still have my hubby and one of my boys. Hopefully Dylan can get sorted with chemo then we get him a brother or sister. Hope is everything. It is looking quite nebulous here so I suspect the rain is on its way. No dancing naked in it mind 😂🙈💦☔️ Xxx

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GloomyEeyore5 months ago

Giraffes are such beautiful, graceful creatures. Must be awkward drinking when you are that tall! Glad I don’t have to go through that for a drink!

It is good that your tests were normal but I do hope you find out what is causing your pain. Hopefully your gastro will be able to help and you will get some relief. Xx 🦒 🦒

misty14 in reply to GloomyEeyore5 months ago

Thanx ge for your lovely message and good wishes. Will do an update in a fortnight when i will have seen him. I hope he can help as this pain is getting me down now, its been a long time!.

I love giraffe's too, it must be weird seeing everything from so high up. They manage so well don't they?.

I do hope your tonsilitis improves and you start to feel better in yourself. You've had a tough time ge so im keeping 🤞for you.

TAKE CARE Xx🤞💕🤞🦒🤞💕🤞🦒🤞

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Spotty-ewe5 months ago

Looks like my Pilates class!🤣🤣 Aren’t they lovely animals so beautiful and graceful. 😍

That’s SO frustrating that they can’t find the reason for your biliary pain. I had similar pain for around 10 years (14 - 24 years old) and after umpteen barium meal tests that showed nothing was wrong my new GP examined me during an attack (as I called them) when I was 24 and said he could feel inflammation around my gall bladder. So he referred me to the surgeon Mr Ball who was famous for gall bladder ops and was nicknamed Mr Gall! 😆 He was said to have removed so many gall bladders that he was likely going to use all the stones for the new extension to the hospital! 🤣 Anyway, he carried out more tests and found my gall bladder to be mal-functioning with no stones. After he removed it I never had the pain again and treated myself to the first bacon roll I’d had in years! 😋 It was such a relief and worth the 3 month recovery period and the long scar from side to side (they didn’t do it by keyhole in those days). So I hope it isn’t long until you meet your own Mr Gall and have the problem sorted out. 🙏🏻 But in the meantime you have my sincere sympathy. I remember only too well how awful the pain was and how I didn’t know what to do with myself when I had my attacks of severe pain, being bloated and just feeling really wretched.🥴 It was all put down to ‘nerves’ when I was teenager and until my GP discovered the inflammation during an attack I was never taken seriously. I’m praying they get to the bottom of your problem very soon dear Misty. 🙏🏻 xxxx

misty14 in reply to Spotty-ewe5 months ago

Thank you spotty for your wonderful reply, its got me 🤣this afternoon. I thought of your pilates when i saw the pic!. They are wonderful animals, adapting their lives because they're so tall!. We could learn from them couldnt we?.

Oh golly spotty i didnt realise you were so young when your gallbladder problems started. 10 years to be suffering is such a long time but im sure being so young made them be reluctant to take it out. Im fortunate that my gastro hinted at another test depending on symptoms so hopefully he can come up with possible answers and treatment.

It definitely is like an attack the way it comes on and then goes after a period of time then comes back. Im writing good notes as there are symptoms he doesnt know which might make a difference.

I love Mr Gall, surgeons can get very gungho doing so many gallbladders. 🤣

I hope and 🙏that you get your rheumy appt soon and my liver bloods result will correspond to the pain. They were done today.

Thank you lovely for your wonderful support and i hope you have a relaxing, infection free weekend. Xx💕🤞💕🦒

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Spotty-ewe in reply to misty145 months ago

Yes I was only 13/14 when the symptoms started, but it was fairly infrequent then. I often had an attack on a Sunday night, following the Sunday roast, so being the night before going back to school it was assumed I was suffering with anxiety/school phobia when I was a teenager. 🙄 So it was never known it was my gall bladder until my GP & Mr Ball got hold of me. I was SO grateful because I was at the end of my tether by then. But I’m really pleased your gastro intends doing another test depending on symptoms 👍🏻, so hope and pray he is able to discover what the problem is.🙏🏻 Good idea to keep detailed notes for him. Hoping you get your blood results soon 🤞and thanks for your kind wishes re my Rheumy appt.

Wishing you a lovely weekend too dear Misty. 💕xx

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misty14 in reply to Spotty-ewe5 months ago

Its interesting spotty as my illness started at 14 too and it was put down to 'growing pains' or nerves. No wonder they thought same for you as it happened on a Sunday. We ladies have to break down the age barriers from doctors whatever life stage we're at!.

I get my bloods on monday and speak to my gp. Wonder what he might say?.

🤞you get your rheumy appt come thru. I'm going to have to chase the Endo clinic letter next week as no sign of it. We've got a post strike on mon and tuesday. I hope your bin one doesn't escalate!.

Isnt there always something?. TAKE CARE and i'll keep 🤞 for us both. Hugs. Xx💕🦒💕🤞🦒💕🦒🤞🦒💕

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Spotty-ewe in reply to misty145 months ago

Pleased to hear you get your blood result Monday and speak to GP then. 👍🏻 I’ll be thinking of you and praying it all goes well. 🙏🏻 Not so good you have to chase the Endo clinic! 🙄Funny you should mention bins! It was bin day here today and when hubby went to collect our wheely bin and our neighbour’s as he always does, ours wasn’t there!!😳 He checked with other neighbours - no sign. He phoned the council and they said it will have fallen into the bin lorry and due to the danger of one of the men having his arm damaged if he grabbed for it they’d have let it go and it will be crushed now!🥴 What? Don’t they have an emergency button? 🤷🏼‍♀️ What if somebody fell in? Don’t they have any means of stopping it? So our bin all covered in cheery flowery stickers has gone!😭 What a waste of tax payers money and it will be going to landfill! Their error but WE have to go to collect council bin bags to use until a new bin is delivered in 2 - 3 weeks time!🤨 There’s always something eh?

I’ll keep my fingers crossed too for both of us so hopefully we’ll both have some luck.🤞🍀 Loads of hugs back to you. 🤗🤗😘xx

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misty14 in reply to Spotty-ewe5 months ago

Thanx so much spotty for your lovely messages and thoughts. I will let you know how mon goes. I do hope your not having to pay for a new bin as it was their error!. Awful to lose your one with the lovely stickers on. Hope you've got some left over for your new bin. As you rightly say haven't they got an emergency stop button?. It doesnt bear thinking about if one of them got hand or arm stuck!. I would think all vehicles should have one of those buttons, someone just didnt think of it in time!.

What a palaver having to use and buy bags for 2-3 weeks whilst waiting and its not your fault!. Its so annoying!.

I will be in touch early next week but im keeping 🤞you will have an appt by then. Xx🤞💕🤞🦒💕🤞💕🦒💕

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Spotty-ewe in reply to misty145 months ago

No we don’t have to pay for the new bin or the rubbish bags but having to go and collect them 12 miles away is annoying. Hubby bought new stickers, of wildlife this time, for the new bin. But what a waste of our perfectly decent old bin which has gone to landfill adding to the mountainds of non-biodegradable rubbish. 😫 From what the council lady said it isn’t an uncommon occurrence!😳 You can guess what we think of the standard of their service - rubbish!🤣🤣 I look forward to hearing from you early next week. Until then have a great weekend Misty and I’ll be 🙏🏻 for you. Xx🤗🙏🏻💕🍀🤞

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misty14 in reply to Spotty-ewe5 months ago

It really is all a load of RUBBISH spotty, 🤣specially a round trip of 24 miles to get the bags. All very expensive. Hope they deliver the new bin to you or will you have to go and collect it?. Our lives are just becoming more stressful and tiring each day. Will email soon. Xx💕🦒💕🤞🦒💕🦒🤞

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Spotty-ewe in reply to misty145 months ago

They deliver - we hope!! 🤣 🤗😘💕🙏🏻🍀🤞xxxx

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misty14 in reply to Spotty-ewe5 months ago

Keeping 🤞they do spotty, you've both earned that!. I hear that your bin strikes are on hold as a new pay deal will be put before members next week. 🤞thats it for you.

Good luck too for your wee sample on monday, hope no infection and your seen quickly by the MSK physio. Sorry your sacroilliac joint is still so painful. Hopefully she will be very helpful and dr nick was being very thorough!. He's such a good dr.

Mum saw a similar physio at our surgery and it was very good and helpful for her. Very quick getting an appt too so hope same for you. 🤞. Xx🦒🤞🦒💕

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Spotty-ewe in reply to misty145 months ago

Thanks Misty. 🤗😘💕xxxx

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stillsdisease in reply to Spotty-ewe5 months ago

Pilates🤣🤣🤣🤣 thanks for the giggle

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Spotty-ewe in reply to stillsdisease5 months ago

So glad it gave you a giggle Stills. You should see me in our Pilates class and you’d have even more of a giggle. 🤣🤣 Take care. 🤗x

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KnitSewPurl5 months ago

I get constant pain on my feet and the pain increases with flare ups . At the moment I am getting pain on my right side under my ribs at the back but I already had my gallbladder out in 1998 yes I was very young to have it out even my GP was very reluctant to send me for an ultrasound at that time I had to push for it and told him not everyone fall in those categories of fair fat and 50s. 😂. I have never fallen in any categories always been the odd one in their theories clarification don't fit the book!!So there you go , the Lupus story I think you will find most of us are like it we don't fit the book (theory side of it)

I have got a referral made by my GP to my rhuemy still waiting on that to come through we have until the Oct 20th until I hear from them then I will know when my date to see them .Cannot wait 🙄😜

misty14 in reply to KnitSewPurl5 months ago

I'm really sorry knitsewpurl that your also coping with such a lot of pain like i am. Feet are tough and extra painful, this biliary pain is on another level for me.

Im sorry your getting it despite having your gallbladder out. Its where my pain is and my gallbladder is still there. There are different ways of treating biliary pain so you might also need a gastro referral as well as rheumy. You must be counting the days till oct 20th to know when you'll be seen. 🤞it comes thru for you. Don't we wish our lives away?.

I do so agree about not 'fitting the rightvboxes'. Im the same with my lupus diagnosis. It really does make it harder dealing with doctors. I 've wish ed countless times that i was straightforward and easy to treat over the years and been saying it again after my normal results now. Its lovely though finding similar people like you. Makes us feel more 'normal 'doesnt it?.

I shall do an update in a fortnight with another 'cutie pic' so might see you again. Do hope the pain eases soon. Have you got painkillers?. I had to ask and ive got codiene!. TAKE CAREXx🦒💕🦒🤞💕🦒

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Pumpkin20095 months ago

The giraffes definitely brought a smile for me. I also loved the last cutey pic. I am glad your tests were all right, but I also understand that something is causing the intense pain so ruling some things out is good, but you still need answers. I have still been dealing with all my intestinal problems and some days, it really gets me down. But then, Gigi jumped on me on the couch wanting to sit with me and I ended up with another broken rib. Nothing to do for ribs, but suffer through the pain. Gigi hardly ever gets on the couch and knows something happened. It seems like our bodies are just waitin for something else to happen. Realize that I have to take the scary Prolia that the doctors kept wanting me to do. i told myself if I broke another bone, I would have to really seriously consider it. hope your appointment goes well with something encouraging. I will keep you in my thoughts.

Healing hugs.

misty14 in reply to Pumpkin20095 months ago

Thank you pumpkin for your lovely mesdage but i'm so sorry you've been struggling with a lot of problems. A broken rib is soooo painful and your bones sound so porous if your cat jumping up can cause a break.

Why are you scared about the Prolia?. Is it the possible side effects?. They always list them all but doesnt mean you will have them. There are lots of different bone strengthening drugs if you can't tolerate this one. Its so importsnt pumpkin, id hate you to have osteoporosis like i have. I'm so very sorry.

Did you talk to the immunologist about how you are?. Sounds like you need to pronto. Intestinal problems really do impact our lives. This biliary pain is getting me down tbh pumpkin so i really do understand how you feel. I wish i could wave my magic wand and magic it all away for us both. 🧚‍♂️

Your spot on how importsnt it is to have a diagnosis for troublesome symptoms. I'm hoping to get good help when i see gastro soon. I will do an update. Thank you so much for all your support dear pumpkin. Seek as much help as you can with all your coping with. TAKE CARE, sending lots of healing hugs to you. Xx💕🦒💕🤞

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Pumpkin2009 in reply to misty145 months ago

Misty, I so appreciate your support and caring understanding. Actually, it was my dog that jumped on me, but my bones are extremely porous. I have been on numerous osteoporosis meds forever. Before I ever even took prednisone. Besides, lupus, I have low vit. D, prednisone, hyperparathyroidism and of course intestinal problems - all that hurt the bones. My hesitation on Prolia is that once in the body, it is for 6 months. Years ago I was on Forteo shots and was sick everyday until the doctor felt that it was affecting the quality of my life. Normally, I don't even consider the side effects, but knowing that they could be there for 6 months is a bit disconcerting. I do realize that I can't risk more broken bones . It does seem that we keep having to deal with something. Just so glad to be able to share with you although it would be better to be sharing answers to all the mysteries. Have a nice weekend. Will keep hoping we both get some kind of answers. Take good care.

Many healing hugs and hopeful thoughts.

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misty14 in reply to Pumpkin20095 months ago

Dear pumpkin, i really do understand the difficulties of juggling drugs and side effects as ive had a lot of practice. Im sorry you have too. Its TOUGH all your health problems hit your bones. I'm glad though its helpful to share. Are you on pred now?. What kind of dose?.

Hope your taking calcium and vitd as that is the first rung of bone strengthening treatment really. I do understand your worries of Porteo being in your system for 6 months and after a nasty experience of side effects you don't want a repeat. Trouble is they're designed to stay in our bodies to do the strengthening work!. Some of them though side effects happen immediately and then tail off as your body gets used to it.

The bone treatment ive been on is Zolendronate, an infusion which is tolerated much better. My tummy hadhad enough before i was put on this. Side effects happened at 1st infusion but didnt last very long and didnt happen at all at the next ones and its been good for my bones. Maybe you could ask your rheumy about it?.

I'm sorry it was your dog jumping up who broke your rib. I do hope its a little less painful.

Its no fun being a mystury as we end up suffering much longer while doctors try to figure it out. I always wanted to be easy and straight forward to diagnose and treat, still do!!. Sadly my body had other ideas. 🤷‍♂️

We just have to make the best of it pumpkin don't we?. TAKE CARE and sending lots of healing thoughtwaves back to you. Xx🤞💕🦒💐💕🤞🐶💕

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stillsdisease5 months ago

I think these giraffes audition for strictly!Glad your foot is manageable at the moment.

I’m in a codeine haze tonight so can’t be coherent sorry.

misty14 in reply to stillsdisease5 months ago

Haha!. Definitely! Stills. Glad your a Strictly fan too. Sorry your suffering and having to take codiene like me. Do you find the constipation tough to deal with?. Xx🦒💕

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stillsdisease in reply to misty145 months ago

Yes , it’s a painful side effect I’m afraid. I ear prunes and drink extra water which helps a titchy bit

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misty14 in reply to stillsdisease5 months ago

I'm finding it hard too stills and take prune juice. I also use Movicol which is very gentle and effective. Your gp could prescribe it. Xx🦒💕🦒🤞

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stillsdisease in reply to misty145 months ago

GP …….. giraffe practitioner? 😂😂

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misty14 in reply to stillsdisease5 months ago

Haha! Stills, 🤣🤣, really good. Your haze must have lifted!. Xx

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ExtremeDuvetDaze5 months ago

Oh wow that’s a very interesting fact! 😱

misty145 months ago

Thats really clever bpdoctor. Evolution is wonderful if we just let it do its job and not interfere so much. X

svfarmer5 months ago

Hi Misty I keep getting problems and getting blocked out of my account so have only just seen this pic, it did make me laugh, they have such cute little faces. I’m glad you haven’t got gallstones etc but frustrating that they can’t find out what the problem is. Also I’m so sorry your foot is painful, you haven’t had a lot of luck lately 😢

It’s Mira Monday tomorrow so look out for a cutie pic of my furry girl.

Lots of love as always ❤️

weathervane5 months ago

Hi misty , i hope you’re feeling good today, i love the picture, giraffes are wonderful creatures. Im just back from my visit to my sisters in Newcastle, had a great weekend, lots of chat and reminiscing about Mum and Dad . We went to Alnwick castle, then for walk on beach on Friday, on Saturday we went to Hexham Abbey and the out for dinner. We were so lucky with the weather.

Im totally exhausted now, will have a rest tomorrow, after I’ve been to feed my sons cats as he is away.

I hope you get somewhere with your appointment, it’s awful that you don’t know the cause of the pain . Have they done an mri or an ultrasound? Good luck with the 13th i will be think of you.

Lots of hugs 😘🥰💕🤗🤗🤗🍀

misty14 in reply to weathervane5 months ago

Thanx weathervane for your lovely message. So pleased you've had such a good catch up with your sisters and been a great tourist too. Lovely you had good weather too.

We watched Ridley and enjoyed it despite it being dark. Lovely seeing Adrian Dunbar using his music in the part. We're going to watch episode 2. Hope you enjoyed it.

Ive just had my gastro appt in the post and its on the 20th due to annual leave again!!. Oh well only a week's delay. Ive had a ultrasound which is clear but maybe he might suggest a CT scan to be clearer what this pain might be. Ive developed a new symptom he needs to know about and my liver reading is up again when ive had the pain. It is like attacks for 2-3 weeks. There must be a reason for it!.

In the meantime im trying elimination diets to see if wheat, dairy etc makes any difference!. So far just a slight diff with soya milk !.

Recover and enjoy rest of the week weathervane. Soon be Strictly Show. Xx

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