Hello EveryoneSorry for delayed 'cutie pics' but have had tech problems that have luckily been sorted.
These sygnets are very special as they are the first ones to be born this year at Abbotsbury Swannery and they arrived early on Coronation Day!. They are cute aren't they?.
I do hope you have all been enjoying this lovely weather but keeping safe and well too as it doesn't suit us all.
TAKE CARE
MistyX
P s. I am counting the days now until my gastro surgeon appt. Still in a lot of PAIN but its not long till I see him on 19th after his hols!!. Nearly there!!.
My special adrenal test results were very low so i must stay on steroids and they will be repeated after my appt in Aug/Sept.
Thanx so much for all your support, its really appreciated.
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misty14
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Hi Misty, Those fluffy babies are just adorable 🥰 first to welcome the 👑. How lovely a hatching. Just made me smile,thank you. I wish you all the best for your ongoing GI difficulties, and know my prayers are with you dear one. I now see a Nephrologist for my adrenal glands and kidneys. Because of my extremely high blood pressure.She has help me much. Take care, all my peace and love, The Stormy Sunshine 💐😇💖xxxxx
Thank you dear Storm for your lovely message. I'm so pleased you loved the 'little ones'. They are so very cute. I'm very sorry you have serious problems with your adrenals and kidneys now!!. There is always something else isn't there to cope with for us. ?. I do hope you are getting good treatment from nephrology. I'm being well looked after by Endocrinology which i'm very grateful for.
Thank you for your lovely wishes re gastro appt. My next 'cutie pic' will be an update from the appt!!. Can't believe i'm actually saying that , its been such a long wait.
Hello Lovey , they’re so cute🥰 we’ve got some lovely little ones in the park but I’ve not seen them for a while so I imagine they’ve grown quite a lot!
Hope all goes well with your gastro appointment, not too long now, sorry it’s been a while but will do a little WhatsApping soon, it’s all been a bit busy here which is good but also exhausting. I’m waiting for my spine MRI result and follow up and still waiting for my rheumy clinic letter from March! I chased it up 5 weeks ago, my GP hasn’t had his either so that’s not good is it , I’m still on steroids, dropping to 6mg next week for a month then 4 then 2, not looking forward to 4 and 2 or none!
Hello lovely, thanks for your lovely message.Glad you like the 'littlies 'and you've managed to go to your park!. Been thinking about you but guessed your still busy with the family and waiting for your MRI results. 🤞when they come. Its hard waiting and wondering. Thats really bad still waiting for your Rheumy clinic letter and you've chased it!!. They're dept can be notoriously slow with letters. They don't do RUSH as they're not used to it as a speciality!!. Well done with the steroids but its brill to be reducing monthly. Hope your keeping a note of symptoms and the dose. When even lower if its tough , reduce even slower. Its all info for the Rheumy in Sept. Ive got a new Rheumy to meet soonish and i'm not looking forward to it!. Just don't know how he'll be!!.
No rush to Whats App diane, just when you feel able to. I hope 🙏you hear something soon. Have a good week. Xx🌺💕🌺🐥💐👍🌺💕🌺🐥🙏🌺💐🥰
Oow a new rheumy, I know how you feel, I was so anxious about meeting mine in March as you know and had to be super prepared, it takes so much effort and you wonder if you’ll fit everything in in the short time you get.
I do hope they’re nice and take the time to listen, mine did but I know she didn’t want me on steroids so I’m not sure what she’ll say but although I’m no where near normal I have managed a bit better on them than off them, and I did stop the hydroxy!
Yes I’ll keep a note of symptoms, thanks lovely, I know you’re a pro when it comes to steroids😊.
Maybe EDD you've found a dose of steroids that your body tolerates and the illness is better on!. ?. I'm so glad if you have and as long as its 5mg and below its a safer dose. Your Rheumy may be relieved as your so drug sensitive , it narrows the options she's got to help you!!. Long term its difficult though as you can't take HCQ but thats her problem not ours!!. Haha!. Its all good info for her though. Take careXx🐥💕🐥🤞💕🐥💕🤞💕🐥
Thanks lovely I think you could well be right, will be interesting at my next appointment, I might try and give the hydroxy one more go before I see her.
Aww Misty, aren’t they so cute and fluffy. 🥰 Very special wee signets too. 😘
I am keeping indoors during the day and only venturing into the garden when it is in the shade. My rash is still active even after steroid injection 🙄so I see Rheumy again on 20th. But I’m feeling good otherwise - better than in a very long time.👍🏻 Long may it last.🙏🏻
Not long now until your long awaited gastro surgeon appt. 👏🏻 I’m keeping everything crossed that is goes well for you and that you at last get answers to what is causing all your pain and what can be done about it. You’ve suffered far too long Misty. Hang in there - nearly there now. Xxxx
Thank you spotty for your lovely mesdage. Glad you liked the special 'cuties'. So sorry you've still got a very active rash that is morooning you indoors till evening!!. Its so hard to be scared of the 🌞. Glad though that the steroid injection helped you feel much better as you've had such a lousy year this year. It proves how much you need that DMARD. I've just spoken to my U.S penfriend and she's confirmed that Myco was a gamechanger in her care for her and it still is. Prior to it she'd been needing a lot of steroids to keep her lupus at bay. She's taken Myco for years now. I really do appreciate all your support and prayers spotty and i really do hope that we bring each other luck for our important appt's. 🤞.I can't believe i can say next 'cutie pic' will be an update of this appt!. Its the last bit of waiting as you rightly say but it still feels like it goes extra slow when you need it so BADLY. Do you find that?.
Have as good a week as you can spotty, the weather may break too. Xx🐥💕🐥
Thanks for your support and reassurance Misty - good to hear that Mycophenolate made such a difference to Julie too. 👏🏻 It seems to be the better tolerated of the 2 immunosuppressants Rheumy offered me. So I’ll go for that one if he wants me to start one when I see him again on 20th. I appreciate all your support too Misty and if we don’t bring each other luck at our upcoming appts it won’t be through want of 🙏🏻 and keeping our fingers 🤞 for each other. 😉 Oh yes, I totally agree that the nearer you get to a long-awaited appt the slower it seems to be in actually arriving. So strange. I;ll be thinking of you Misty. Take care.xxx
They are the most adorable cygnets! 🦢 There is a park a wee bit away from where I live that has a pond. There is a family of swans there and nine new little fluff balls. Unfortunately I can’t get to the park myself as it is a fair walk. I have seen the swans and cygnets though as a friend goes regularly and posts a lot of photos. All nine are still thriving which is good news too.
Great that your Gastro appointment is not so far away now. Two weeks tomorrow. Same day as my rheumatology appointment. My respiratory appointment has been put back a week. Got a letter from the hospital apologising and saying they would have to change it. I’ve waited since December so a week won’t make much difference. 🤷🏻♀️ 🦢 🦆
Thank you ge for your lovely message. I love this time of the year seeing all the new arrivals. I'm so sorry you can't get to the park to see the new 'fluffballs' but thats lovely of your friend showing you photos of them. I really thought you'd have had your respirafory appt by now. I bet you feel that its never going to happen. Its been so long.
Hope we bring each other luck for our appt's that week so i will look forward to your news as well. Take care. Xx🐥💕
Misty, So glad you are having your appointment soon. hopefully, you will have some answers and help with your pain. I love the babies. So sweet! I can't remember if I posted since my ear surgery. It was an extremely painful procedure, but so far it has worked miracles. Right away, the crazy endless pulsitle and other tinnitus stopped and I regained the hearing to where it was before. I still have sensineural hearing loss and may consider hearing aids sooner than later. The doctor said the fluid may return and then a tube will have to be put in.Hopefully, not. Just can't predict since who know why it happened in the first place. The weird visual hallucinations nueropathy in my hands and feet and constant intestinal issues are still with me. Just have to keep muddling through.
Looking forward to hearing how things are with you after your appointment. You are always in my thoughts.
Thank you dear pumpkin for your lovely mesdage. Glad you liked the 'cuties'. I'm so sorry you've had to undergo such painful ear surgery but i'm really pleased its been successful!!. What a relief as your having to cope with so much. I will keep my 🤞that you don't get a reoccurrance. The world must be a very noisy place now you can hear better!.
I'm so sorry your still having to deal with the hallucinations and intestinal problems. Maybe a chat with your gp about the intestinal problems might be a good idea?!.
Thank you so much pumpkin for your support and good wishes for my appt. I can't believe my next 'cutie pic' will be an update on it. I'm counting the hours as i'm in so much pain. Hopefully he will trial some treatment while i wait for further tests.
Look after yourself specially in this heat and TAKE CARE. Xx
hi Misty - thanks for the cute pics, they are lovely. I’m sure your appointment can’t come quick enough now and am so sorry about all your health issues.
I’m all good apart from menopause flushes that are sending me up the wall , I’ve started some new tablets as can’t take HRT but they are not helping at all.
Thanx svfarmer for your lovely message and good wishes. I'm sorry your suffering so badly with menopause hot flushes. Thats tough as they can make you feel horrible. Can you go back to the doctor/prescriber who prescribed those different tablets and tell them they're not working. ?Its so trial and error with these things. Its difficult not being able to take HRT!.
The website with Dr louise newsom is full of menopause help and advice. Thats worth a look if you havdnt already!. Its menopausedoctor.co.uk
Yes, your so right, i'm counting the hours till my gastric surgeon appt!!. The nearer it is, the slower it seems which sounds daft doesnt it? Haha!.
Do hope Nurses Mira and Bea are helping you take your mind off the flushes!!.
So glad you liked the cygnets. Take care in the heat . Xx🐥💕🐥🤞🐥💕🐥🤞💕
Hi Misty, Just wanted you to know that I am thinking about you and wishing you all the best at your appointment. Hope you get some answers and will be feeling better soon.
Thank you pumpkin for your lovely mesdage and support. Unfortunately my appt has been changed 3x and is now 3/7!!. Fortnight tomorrow!!. I've been so cross as no pain let up but what can you do?. Hopefully 3/7 will go ahead and its lovely to think your thinking of me so much.
I do hope your as well as you can be. Sending lots of healing thoughtwaves back to you. Xx💕🤞💕💐💕🤞💕💐
Oh, I am so sorry it was changed. That is so not fair. Why can't things just be easier?
The neurologist I was seeing is leaving. I was there just a bit ago and nothing was said. Then I got a letter in the mail. I am at least trying to get records of the nerve studies for my new rheumatologist I will see in August. It's not the biggest thing in the world, but so frustrating. She had no thoughts on the hallucinations anyway so my GP was already talking about seeing another one.
I will keep thinking positive thoughts for you and that this new appointment date will be a reality.
Oh Pumpkin, its very hard too when we have to get to know new Consultant's. Funnily enough i may be seeing a new Rheumy next month too!!. Lots of changes are happening but it is a fresh mind on our cases!. Maybe the new rheumy will know what could be causing the hallucinations. There is a version of lupus called neuro- psychiatric lupus where it affects the brain!!. Glad too you have the nerve conduction studies results which could be helpful to him. He may say whether you need a neuro consultant or not!. I hate having to explain from the begining when its someone new. Its so tiring!!.
Thank you for your lovely wishes pumpkin. 'Cutie Pic ' will appear after the 3rd. TAKE CARE. And sending lots of healing hugs to you. Xx
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