Three for two cuties

[misty14]

Hello EveryoneJust thought we all needed a fun 'cutie pic' this time as weather has been so grey and cold for a long time now!!.

Meet Annie the Alpaca and her daughter Bailey who live with their owner in Scotland. Handreared as an orphan, Annie is used to indoor comforts and thinks she's one of the family's labradoodles and refuses to live outside!!. Who can blame her?. She's pregnant again so there will be another alpaca soon. Hope they have enough room!!.

I love their faces and they're such characters!. Has anyone done an alpaca trek?.

Hope this gives you all some 😀's and your all coping as well as possible with everything.

TAKE CARE

MistyXx

P.s, not long now for leg treatment and foot appt after Half Term. I've also been very lucky as i got a cancellation to speak to my Pain Consultant about this awful biliary pain. She was FAB and has written to my gastro and mr surgeon who did gallbladder op!. They refused to help so i hope she can change their minds!. Will update when i hear anything. Really do appreciate all your support. Xx

[CecilyParsley]

Absolutely gorgeous photo Misty thank you for sharing. They are so gorgeous, what a lucky family to have her.

I am so pleased that you have a supportive pain specialist lovely. It is so hard on us when people we need to help us refuse to do so. I sincerely hope they change their minds, step up and do their damned jobs. Keeping everything crossed for you lovely xxx

[misty14 in reply to CecilyParsley]

Thank you so much Cecily for such a very generous reply. I'm so pleased you loved the alpacas, i think they're adorable characters. Especially thru you having such bad experiences, i know how lucky i am to have such a supportive Pain Consultant. We've known each other years now but when she started she was so different that i didn't like her at all!!. I may not see her as much either as just learn't she's got a new job promotion , more into management, which seems such a waste of her talents!!. We'll see what happens!!. Hopefully yes, her intervention will make those consultants do their jobs properly, especially as she doesn't want me taking Oramorph anymore!!. Thank goodness i see her in a weeks time, can't it feel like forever though when so in need!!!. ?.

How are you?. How did your Rheumy appt go?. I do hope it was helpful. Xx💕🤞💕💐

[CecilyParsley in reply to misty14]

I really hope that she can sort things for you before her promotion. Also that her replacement can be as supportive. I have seen two NHS pain specialists one time each in 16 years. Both were rude, dismissive and uncaring. The private pain specialist I saw was lovely and very caring unfortunately I was unable to tolerate the pain medications she prescribed.

The Rheumy appointment was abysmal. I had a total meltdown down when I came out and was in utter despair l basically as I refused to stay on the Aza he washed his hands of me saying no other Dmard works on joints and ulceration. He refused even low dose steroids despite the face that he could see I was having trouble walking. I will see you sometime he said, hopefully your bowel issues and knee surgery will be sorted…he refused to accept my Gastro issues were related to my illness or that my leg was inflammatory. It is just ludicrous as that is why he prescribed the Aza in the first place. I am struggling but have a plan. The new physio (who did an assessment the next day thanks to intervention by my GP ) suggested my leg pain might be caused by a spinal issue. I seriously doubt it but at least I have been referred for an MRI now, something I have been begging for for 14 months. I have a date for my pelvic health assessment next month and my colonoscopy in April and my Urology appointment in May. Thanks for asking lovely xxx

[misty14 in reply to CecilyParsley]

I'm very SORRY Cecily, your Rheumy appt was so BAD. I do detect such a change of attitude in the NHS since Covid and the strikes. I don't know about ulceration but he's wrong that Aza is the only DMARD to treat joints. MTX and MMF treat them very successfully. They don't like it if we refuse treatment and its a horrible , vulnerable place to be left high and dry by them. He obviously thought your gastro problems weren't Aza related as he didn't agree with changjng it. Its not a very well tolerated drug out of all the DMARDS.Thank goodness your lovely gp came good again and you've got an MRI for your back to come. It could well be affecting your leg.

Don't we need our advocate doctors all the more!. I was shocked at the attitude of my gastro and mr surgeon!. Thank goodness you have your gp still!!. I hope you get better help at all these important appt's coming up cecily. 🤞

Anaethetists have to be specially chosen to do Pain Clinics and they can't find anyone suitable to fill the slot yet. Her colleague has retired now. You've had such a poor experience of those clinics too. I do hope your managing with the pain and you get an MRI soon. 🤞. I'll be updating next week. TAKE CARE. Xx

[CecilyParsley in reply to misty14]

Thank you so much. I felt utterly without hope when I left the room after that appointment. He has known me for four years and I had hoped that he knew I would never refuse to try something that might help. I might be wrong but I think he knew my care was poor. I was sent the prescription for the Aza through the post. No discussion, no reason. I tried it for three months. I took anti emetics to try and counter the nausea. It helped the leg pain, why on earth would I not want to take it?

My gut pain has gone, my bowel pain remains because it was a different issue. The GP is fabulous but getting to see her or spend adequate time is problematic as the surgery has been sold to a private company. It is all over the news now, staff are not being paid, their pension contributions not paid, contractors not paid, clinical waste not collected so we have one GP who is alone, also on call so you get 10 minutes if you are lucky. Further both the Rheumy and the Orthopaedic Surgeon have repeatedly failed to even acknowledge her letters to them. Therefore I am nit hopeful of getting help in either direction. I am struggling very badly if I am honest. I can no longer do the things I love, I am in constant pain and very low. The only thing that is good and positive is the volunteer from the `wren Project who has been truly amazing. Just talking about how frustrated and desperate I feel helps me. My husband has his own demons and does not cope well with me so distressed so it is a real Godsend.

I sincerely hope that you will get good news Misty. I hope to hear good news soon xxx

[misty14 in reply to CecilyParsley]

Oh Cecily, you must have felt so hopeless coming out of that apalling appointment. Many would have felt suicidal!!. Have you had the clinic letter yet becsuse sometimes that can be better than the actual appt?. You've had apalling care over the years which is unacceptable and a gp alone in Wales in a private surgery dealing with so many patients is UNSAFE Care quite frankly and shouldn't be allowed. Thats the trouble isn't it of opting out of NHS. There's no accountability?. I did see it on the news!. She'll never keep it up coping alone!!. I think she's amazing as she's been alone a long time now.

I hope she gets some colleagues soon.

I'm so glad the Wren Project is helpjng you as i've wondered how you were coping. Our loved ones can only support so far. Lived experience is so much better isn't it?.

Thank you so much for your good wishes about my appt's next week. 🤞the Pelvic Physio is kind and compassionate to you and is helpful. TAKE CARE, Xx💐🍀🤞🙏💐

[CecilyParsley in reply to misty14]

To be honest Misty for about two days I gave up. Utter despair. I don’t think most Consultants deal with systemic illness well. The see us in compartments but so often one issue triggers another.

I have my OT assessment any minute now. I hate stair lifts but it will be a huge help if I get one at the moment. You take care too and thank you for your kindness xxx

[misty14 in reply to CecilyParsley]

I agree, some consultants find it harder than others but there's no excuse for treating patients so badly. Its how you say things!. How did it go?. Will you be able to have a stairlift Cecily?.

[CecilyParsley in reply to misty14]

Hi Misty thank you for asking. Yes I am seeing a surveyor next week to plan my stair lift. The OT was lovely and is getting an attachment to the bed to help me up too. I am so grateful xxx

[misty14 in reply to CecilyParsley]

Thank goodness your finally getting help that you desperately need!.Cecily. Maybe that's turned the tide for you?. 🤞Lets hope so. Good luck next week and i'll pop up again. Xx

[GloomyEeyore]

That is an adorable pic Misty. Alpacas are just so cute 🥰

Great to hear that your foot appointment is so soon. Time seems to be flying by which isn’t a bad thing for those of us waiting for appointments. It is also great that you have such a wonderful pain specialist. Hopefully she will be able to get you the help you so badly need. Xx 🦙🦙

[misty14 in reply to GloomyEeyore]

Thank you ge for your lovely reply and good wishes. So glad you liked the alpacas. I do hope you hear soon about your knee ultrasound wasn't it?. Today, has flown by suddenly so its really not long for all my appt's now next week. I'm so very lucky that my Pain Consultant is such an advocate for me. She did seem to know what might be happening which was a relief!. It may not be for much longer as she's got a new job in management so i may not see her as much!!. Will miss her greatly!!.

I hope your all coping with this cold weather . It may be changing at last end of the week!!.

Take care and i'll be updating soon. Xx 🤞

[KayHimm]

Annie knows what’s good! I love it that she is so cared for. We all need that.

You and Annie have super humans to advocate for you! 😁 It is often the most important aspect of good care.

🥰😘 Kay

[misty14 in reply to KayHimm]

So glad kay, you loved Annie and her sibling. Quite a character heh!!. Thank goodness you have found good care at your new apartment. I totally agree that having a good advocate is vital for our care. Specially , we can miss out on good care because our illnesses are regarded as rare and if doctors don't understand or agree on symptoms we can be left suffering a long time!!. Take care. Xx

[Carcrashgal]

Lovely pic, thank you! And good luck with the appointment!

[misty14 in reply to Carcrashgal]

Thank you so much Carcrashgal for your lovely message. So glad you loved the pic. I will update about the appt's . Hope your doing well. Xx

[Chris21]

lovely photo, thank you! Alpaca is one of the things that I’d love to do and have discovered a local farm that does it. Think i might wait for warmer weather first 😉

so close for your appt, hope it arrives with no problems in between. 🤞and hope the gastro people step up to help you. x

[misty14 in reply to Chris21]

Thank you chris for your lovely wishes for my appt's!. So glad you liked the Alpacas!. Its great you've found a local farm where they do walks. I've looked locally for my mum's special birthday but couldn't find anything so will look forward to reading how you get on. Oh definitely a treat for warmer weather. Have just seen that the weather may go milder end of the week. We so need it don't we?. I hope you've coped with the cold and having Raynauds. It also adds to our fatigue too.

I'm keeping 🤞that the gastros will do something!. Its so much easier to dismiss a patient rather than a colleague. She did say to me that she thought she knew why i'm getting the pain back. She'd heard of it before which is a big RELIEF.

Keeping 🤞nothing is changed and i'll update next week. TAKE CARE. Xx