Missing you

[EdithWales]

Just sitting in the hairdressers and thinking about you all. It’s some years since you saved me with your sound advice and knowledge.

I have been fairly ok, still stuck on 5mgs Prednisolone after 8 years, my latest Rheumatologist referred me to an Endocrinologist who said I would probably be on steroids for the rest of my life, at 81 I accept that for a good quality and still enjoying myself. My PMR seems to be reasonably stable.

It will be really good to hear how you are getting on

Take care all of you

Edith Wales

[DorsetLady PMRGCAuk volunteer]

Lovely to hear from you, as you rightly say QOL is all....keep enjoying it as long as you can.

As you can see I'm still loitering around, spouting off as usual... GCA now been in remission for 6 years, and doing nicely thank you.

Take care 🌺

[EdithWales in reply to DorsetLady]

Really good to hear from you. All well here, my daughter is in remission.

[DorsetLady PMRGCAuk volunteer in reply to EdithWales]

Pleased to hear it...😄

[jinasc]

Keep up the QOL - now at 84 and 11 years in remission.

Mam used to say old age never comes alone it brings unwanted friends - the trick is to make them friends. Enjoy yourself and yes like DL still loitering - but not as much these days.

Stay well 👍👍

[EdithWales in reply to jinasc]

You are amazing and this forum owes you so much. It’s really encouraging that Despite it all we are still here 🥂

[PMRpro Ambassador]

We miss you too - where have you been!!! Should drop in more often. So glad to hear your daughter has come out the other side.

I'm still here too as you see. Covid etc has been a bit hard, my husband fell and fractured a vertebra just before Covid and by the time he was ready to do rehab - Covid said no and it was slowly downhill after that. He died last October, nearly a year ago. So I'm plugging on my tod. Been an interesting 3 years ...

[EdithWales]

I am not sure, lost 3 of my best friends which was difficult but I am back now

I am so sorry about your husband, that must be really hard, I know how close you were. I hope you are able to see your daughters regularly and that Brexit isn’t making it difficult. My son works in Antibes, fortunately he has an Irish passport.

Just take care of yourself and I am thinking about you

Rx

[PMRpro Ambassador in reply to EdithWales]

Not Brexit making it difficult, except I had to get a new passport and that took 3 months! So no travelling until that arrived, not even to Austria. The NHS hasn't allowed for much - they work all the hours god gives! They were here when he died, I think he just waited for them, 3 hours after they walked in the door he was in another realm. They provided EOL care for 8 days, Nat's a nurse and experienced, she taught her sister. There was no other help, no beds anywhere because of Covid and staffing problems. Then he waited until Nat and I went to get food for a holiday weekend - we'd just parked when Esca called to say come now. We were 4 mins too late.

They came at the end of June for a few days. Been working ever since! I'm a bit reticent about coming over - what would I do if I caught Covid?

[jinasc in reply to PMRpro]

Stay away, although I would hug you so much you would hurt all over .......

It is so lovely that Edith got in touch - many memories came flooding back.

[EdithWales]

Thank you. I am back to stay. Just been out to a Book Reading about the Middle East, must keep the brain cells working. Covid did such damage isolating us, contact with other people is essential 🥂

[SheffieldJane]

Lovely to hear a message from the healthy side. Pop in whenever you like, it’s encouraging to hear from people who have recovered. How do you find the 5 mgs Pred in supporting your Adrenal Function?

[EdithWales in reply to SheffieldJane]

Hi Sheffield Jane

Good to hear from you. I am absolutely symptom free, still bruise if I bang into anything but otherwise fine. The Endocrinologist said I could try to reduce but I need to be in the right head space. I have had battles with the new GP about getting me off oral HRT. I have been on it over 40 years, I know the risks. I reluctantly tried the patches, the dose was too low and I was all over the place. In this practice you don’t get to speak to the hallowed GP but have to go through the Pharmacist ( poor woman) I managed to get one prescription for the tablets but

as yet can’t get them on repeat. Without it I can’t function, I don’t have the life to waste. After a career preaching about shared care and working in partnership with patients I could scream with frustration. I will buy them on the internet if I have to. Life is challenging enough without others making it difficult

Just sorting myself out to go to London at the weekend then Dubai at the end of the month, definitely on the healthy side

Take care 🥂