Hello EveryoneJust had to show you this little 'cutie', a harvest mouse clinging to a daffodil in North Yorkshire. Adults can weigh less than 10 grams!.
Hope we see more Signs of Spring over Easter. Our dwarf tulips are almost out, lovely fiery red!. Shame weather has changed to wet and grey.
Hope you all have as painfree and happy easter as you can.
MistyX
P s, ive finally had a breakthru with this awful biliary pain. My Pain Consultant forwarded my letter to the Upper Gastro Consultant whose put me on list for a special liver MRI. Luckily waiting list is only 4-5 weeks and then he will see me adterwards!. What a long battle this has been.
Seeing my Pain Consultant yesterday for my leg injections, she said us patients with nerve pain can still be prescribed lidocaine patches. Gp's have been wrongly using them which is why CCG's have clamped down as they're expensive!!. Hope thats helpful for you too.
Thanx for helping me thru all this with your support. Xx
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misty14
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Absolutely gorgeous little mouse. Thank you for sharing. Great news about the lidocaine patches for you. Hopefully now things will start to get better for you at long last. Well done for having the courage and tenacity to not accept things xxx
Thank you so much cecily for your lovely , touching mesdage. I do so appreciate it and i'm so pleased you liked the little mouse. I guess , as you know sadly only too well, that its been the level of the pain that has made me try to be innovative to get the help i need more quickly. If i've inspired one person on here to try to do the same and they're successful then its not wasted and i'm pleased to have made a difference.
I hope your muscle weakness feeling is better this week. Mine gets better during the morning as my steroid dose kicks in!!. If it hasnt cecily you must mention it at your next appt as it is tough to live with.
Hope your still going to pottery and enjoying it.
Take care and hope Findlay is still entertaining you but settling down more as he's older now. Xx🐭💕🐶
you are a true warrior Misty. I am suffering yet another UTI and my legs are still wobbly but I find doctors only listen to one thing at a time so it will keep. Finlay went out with his group dog walker this morning. I was a little apprehensive but he absolutely had a ball. He came home soaking and muddy, ate his breakfast and crashed out. I have just got back from pottery and had a lovely welcome home. He is the most loving little boy xxx
So sorry cecily that you have another UTI but were a warrior yourself going to Pottery. Hope you enjoyed it. Wonderful that Finlay went out with his group dog walker and loved it. I can understand you being 'worried mum' so it must have been lovely knowing what a great time he'd had. Its just like talking about kids isnt it?. Do hope your better soon lovely. Xx
Thank you Misty, it took my mind off the burning and back pain to be honest. Sadly my new GP will not prescribe Nitrofyntoin just Trimethoprim l I think my symptoms are a sign that the original UTI three weeks ago was not cleared. What can you do when they just don’t listen? Xxx
Why won't they prescribe the more effective one?. Cecily. Is it cost or is it just that they don't listen?. So very frustrating as it only prolongs your suffering. Do you also drink cranberry juice as a prevention or take cranberry tablets,?. Xx
I think they just won’t listen. At one time I was on low dose Trimethoprim for two years solid but still had UTI’s. My Urologist accepted that it was not working and that the only antibiotic that helped was Nitrofyntoin. My old surgery knew that the new one will not listen. If I am still suffering next week I will call the Urologist for help. It is just frustrating though to keep going through this blanket approach. We are not all the same . I take triple strength cranberry tablets dailyxxx
Its just so awful cecily and mentally draining when we have to keep telling doctor's what we need and why. 🤞you don't have to contact Urology next week specially as its Easter Break. I'm sorry you suffer so badly with UTI's. If only i had a 🪄. TAKE CARE lovely. Xx🤞💐🦋
Yes it is Misty. She finally gave me five Trimethoprim?? That’s 21/2 days only what the hell was she thinking? I feel worn down by it now to be honest. Thank you for your kindness, it is so very much appreciated xxx
I know exactly what its like cecily, i'm always either ill or have a drug supply problem at these Holiday Times. Its a nightmare and we've got 3 Bank Hols in May!. I do hope you get enough Trimethoprim prescribed. I don't know where people leave their brains sometimes and it is so very wearing. I'm trying to get pain patches prescribed in time. Hope we bring each other luck. 🤞
Awww aren’t they the most cutest little mice, so incredibly tiny. 🥰
Your dwarf tulips sound lovely, I have a few bulbs popping up but I can’t remember what they are until they flower, just need a bit of warm sun for a few days and everything will come to life!
I’m so please things are moving along for you lovely and I hope your injection is taking good effect 🤞
Thank you EDD for your lovely message and so glad you liked the little mouse. I love them too as you know. Don't you think the smaller the animal , the feistier they are as they have to make up for being so tiny?!. That's rather lovely that you'll find out soon what bulbs you planted when they flower. I shall take a pic of the tulips when they flower as they're fiery red. 🤞we get warmer , brighter weather at Easter and they all come out.
I'm so very sorry your now coping with an injection reaction as it was a different formula!. You do have such rotten luck as i thought i did but i think your worse than me. 😪. I do hope it settles soon, ironic to be having to take Arcoxia again!. There are other NSAIDS that maybe wouldnt be as tough on your heart and kidneys!!. Its a nightmare having to negotiate our way thru all this!.
Ive had a good result from mine thankfully. I'm unusual apparently for it to work straightaway. Trouble is i'm noticing my foot more now my leg's better. I know you'll understand . Only, 9-12 months to wait for foot op. 🙈.
Do try to get the lidocaine patches for your rib and upper back pain. Well worth asking dianne as they do work for nerve pain. 🤞you'll be successful.
Take care lovely with the rest of the week and i really hope your hip settles soon. Sending healing thoughtwaves and a big hug. Xx🤞🌺🦋♥️🌷🌻♥️
Oh goodness it’s such a long wait, let’s hope something will come along sooner 🤞I’m pleased to hear the injection is working so well, not so good with the foot pain😢
Thanks lovely my hip is a bit better but still so tender to touch and quite a bruise at the injection site which I’ve never had before.
I woke up in the night feeling awful so have had a bad day and I think I’ve got a bit of a DD flare, it’s all very painful and I think the hydroxy is also upsetting my tum, I’m not sure I’ll get to my colorectal appointment tomorrow if I feel like this, the other thing is the pharmacy sent out a different brand of omeprazole which doesn’t work but I took two last night, I felt so sick with heartburn too, they’re going to try and get me a brand I can tolerate. I’m going to be upset if I have to stop the hydroxy as I’m taking Zentiva and feel ok on it apart from my tum. You’re absolutely right about navigating all this! 😖
Long may your pain relief last 🤞take care too and thanks for sharing your cutie 🐭
I'M so very sorry EDD that there's no let up for you. I do hope you felt well enough to go the coleterol appt as thats important. Could it have been coincedence that you've started HCQ but you can feel stressed about going to that appt which is why your tum was upset. Also, could you halve the hcq tablets and take an even lower dose?. Your so caught out having drug sensitivities as well. Do hope they can find you a brand of omeprazole you can take. Its awful having to sort all this out. Ive been very lucky in still getting the brand of hcq i can tolerate. Still got problems getting my 5mcg pain patch but they can supply the 10mcg!!. It makes no sense and gives us added problems we don't need. Keeping 🤞that your hip keeps improving.
Hope you sort something out and feel better soon. Xx🤞💕💐🦋🌺💕
Thanks Misty , yes my hip is feeling better than it was but still very tender to touch. No I didn’t go to my appointment I just couldn’t face the drive there and if it was like before it would’ve been a rushed ten minutes and probably discharged so I’m having a telephone appointment end of May which is fine. I haven’t taken the HCQ for a couple of days to see but yes I’ll take half and see what happens, I called the pharmacy to see if they can get a different brand but all they can get is Zentiva, it’s so annoying as I feel ok on it no adverse effects after taking it .You’re right it might be coincidence so, it might just be a DD flare happening at the same time🤷♀️.
Hope you can have a nice weekend 🤞no pain! Take care lovely 🥰 💕🐭💕🐭💕🌷xxx
Very wise EDD not to go to that appt. Gives yourself extra time to think about your bowel. A tel appt is much better , no travelling , parking stress as you say , for a rushed 10min appt!!. Its a nuisance these different hcq brands. I can manage Blackrock and Zentiva but i only take mine every other day due to side effects so thats something else to try. 🤞you'll be able to juggle and take it somehow as its so important for you.
Hope you can find a better omeprazole brand too. 🤞. I'm lucky i'm fine with it.
Glad your hip is improving and i hope your DD does over the weekend. We always live in hope for pain free time. Ive suddenly got tendon trouble in my neuroma foot so no wonder its all painful!. Its always the way as other leg is wonderfully pain free. 🤷♂️
Hope you've not got the stormy weather we have and you have a relaxing weekend. Big hugs. Xx🐭💕🌺🦋🤞🌷💕🤞🐭🙏♥️🌻🤞
It’s blowing a hooly here 💨☔️ I know it’s worse where you are !😞
Thanks lovely that’s a good idea taking it every other day, I’m going to take half later and see what happens like you suggested , maybe do that every other day and slowly build it up to see if my body gets used to it👍
So sorry your foot is playing up badly, why can’t we be totally pain free even for just a day, would be a nice respite? it’s like it’s full on pain or one thing eases and another gets worse, I swear my pain travels, it’s like our bodies just don’t want us to miss out !😫
Keep warm and dry, don’t get blown away. Hope your lovely Tulips don’t get too battered! 🤞
Thats a brill plan EDD, lovely ,will keep my 🤞that you'll be able to do it. Your so right about pain travelling , not wanting our bodies to miss out!. I love that, you've really made me smile 🙂this am. Ive not been pain free for years now, forgotten what its like!. Your the same?!. I've discovered its my achilles tendon as its not been exercised as it should because of my foot. Ive gently done a stretching exercise and got relief!. Aren't we our own dr's these days?.
It beats going out in this dreadful weather. Hopefully it will calm down soon. Will keep an eye on the tulips. TAKE CARE, big hugs. Xx🌷💕🌷🐭🌷💕🌷🐭🌷💕🌷🐭🤞
Hi misty, what a lovely springtime photo, daffodils are my favourite flowers, its a gorgeous spring day here today , suns out 16’ !!!
Im relieved you got your lidocaine patches sorted, such a worry for you . Fingers crossed you will get the MRI soon , maybe a cancellation will come up .
I finally got the rheumy nurse, she told me the specialist nurse for lupus / Sjögren’s/ will contact me , he called and he will talk to my consultant about more bloods as wbc is way down again. He is also liaising the oncologist re the Anastrozole to work out cause of pain. Another step forward hopefully!!
Enjoy your garden , hopefully we will see a tulip picture ?
So glad you liked it weathervane and you love daffodils too. I didnt realise that there are so many different varieties of them!. Hope you've got some in your garden. So glad too that you've heard from the Rheumy nurse and he will liase with oncology for you. Hope your pain can be helped more this way if they can decide the cause. Sorry your wbc is low again, hope it improves for your retuximab infusion. My lymphocytes keep lowering each blood test but so far nobody's worried about it!.
Thank you for your lovely wishes. I'm hoping i hear before end April as May is full of bank holidays for the test.
Glad your warmer like we are although less sunshine here.
Here's an extra pic of some dwarf daffodils we've had in the front garden. Hope you have a lovely Easter. Xx🤞💕
Front garden with yellow daffodils.
biliary pain is awful so I’m glad some progress is being madeMisty
Thanks so much stills. Its the worst pain i've ever had and i've had a lot of pain over the years!. I hope your keeping well and not having too much pain. It is so debillitating!. Have a good weekend. Xx🐭💕🐭🤞
I’m currently having tests for chronic pancreatitis or autoimmune pancreatitis after an “episode”, it may even be gallbladder or spleen related it’s a big unknown at the moment. I’m very sorry to hear about your pain level Misty, I’ve read and digestive organ conditions are painful. I do hope you have good care and effective relief. I’m sending you comfort x
Thank you stills for your lovely message. I'm so very sorry your suffering like me. I'm glad your medics are onto it quickly. I've had auto-immune pancreatitis ruled out as well as gallstones and like you the pain they think could be an auto-immune liver condition. Trouble is when we've got one auto-,immune condition , its so easy to collect others isnt it?. Whichever it is the pain for any of these conditions is just unbearable at times. I do hope they find your answer soon as treatment can then be started. Do let me know how you get on as you've been so supportive of 'cutie pics'. Take Care. Xx
You've still got your sense of humour stills, but isnt it tested?. 🙂I'm sorry your waiting for those camera tests and it all gets delayed because of holidays and strikes!. Its so tough being in such need. Ive found Buscopan the most helpful for the pain. There is also Mebeverine and Peppermint Oil capsules to try. I don't get much relief despite my morphine pain patch being increased to 15mcg's a week. I had a fortnight in dec totally pain free but its returned . That was bliss!. For really sharp pain i add 60mg of codiene and get relief but only for a short time. I also find a heat pad over the area is helpful relief. I did get between a fortnight and a month of normality and no pain when this started but now the biliary pain is more constant. Ive been suffering for over 14 months with it. Had normal gastroscopy but havent had the bowel tests. Ive had an inflamed liver for 5 years and no symptoms until 14 months ago which can happen. We're all different stills and i may just be unlucky not getting much relief!.
I hope you don't have any more episodes stills and you get dates soon. Its horrid having it hanging over. Sorry for long reply , hope its helpful. Glad you liked the daffs, i didnt realise there were so many different varieties. Tulip pic soon. Xx🤞🌷🤞🐭🤞🌷🤞🐭🌷🤞🌷🐭
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