Oh what a kettle of worms i have open... - Hughes Syndrome A...

Hughes Syndrome APS Forum

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Oh what a kettle of worms i have opened from the response.

Jillymo profile image
10 Replies

it just goes to show how many have gone down that same awful path as I !

Thank you all for shareing your stories but most of all for sharing your warmth....as ill as you all are we still have time for others.

What has touched me is the anger i have felt from your mailings of how we have been let down by the NHS

Bless you all for the time you have taken to email me.....A BIG HUG TO ALL XXXXX

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Jillymo profile image
Jillymo
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10 Replies
Manofmendip profile image
Manofmendip

Thank you Jillymo and I'm looking forward to meeting you when we can get a new date for the Bristol/Bath Group meeting.

Dave xx

Jillymo profile image
Jillymo in reply toManofmendip

Dave i would love to come to the meeting but unfortunately I am not a driver & unable to get to Bath or Bristol. :(

It was good news that my grumpy Gp did as i asked & referrerd me bach to the Bath Rheumy. :)

Jill xx

Manofmendip profile image
Manofmendip in reply toJillymo

Hi Jill

I'm sure that Annie Williams, from Warminster, would give you a lift, as long as we make the date of the meeting suit as many people as possible.

I have been busy with both work and singing/conducting but I will post my available dates by PM to the Bristol/Bath area members, this weekend.

Best wishes.

Dave xx

Jillymo profile image
Jillymo in reply toManofmendip

Hi Dave,

I'm afraid Warminster is a long way from me here in Swindon, it would be to far for Annie to come.

I would rather be able to come & hear you sing, what a joy that would be. :)

It has been a long time since going to see a choir, it was the Fleetwood choir here in Swindon.

I found it very moving & one youngster brought tears to my eyes.

How lovely for you to be able to escape into your music.

Kind regards

Jill

Manofmendip profile image
Manofmendip in reply toJillymo

Hi Jill

I'm sorry I was thinking that you are in Westbury but that is another of our members.

It would be lovely to see you at a concert or church service, where I am singing.

Best wishes.

Dave xx

Jillymo profile image
Jillymo in reply toManofmendip

How i wish i could be there it would be lovely.

I am not very mobile at the moment but i am in hope that the Rhuemy at Bath will be able to give me a little of my life back.

Say a prayer for me in church. Jill x

LucyLocket profile image
LucyLocket

(((Jillymo))) . . . as I think an old ad said: it's good to talk! I hadn't seen your blog here before I sent you my latest message - there ARE some good people out there in the NHS but it's getting ever harder to access them easily which really doesn't help when you're not feeling well in the first place.

Thank goodness for places such as Healthunlocked!

Lucy x

Jillymo profile image
Jillymo in reply toLucyLocket

I know there are Lucy....but you said it," they are hard to find."

My Gp was such hard work the other day i wish you had been a fly on the wall.

My word it never used to be like this, it is no wonder my blood pressure is high.

Take care X

Hi Jillmo,

Is it time to say Hip hip ..... now?

I can understand your anger. Try to control your blood pressure although. You have succeeded in getting a referral. You told your GP what you wanted. That is great.

I wish you the best. Kerstin

Jillymo profile image
Jillymo in reply to

It is sad it has to be such a hard battle but i one the war :)

I hope now i shall finally get some answers & correct medication.

It is horrible when somethiung is so obviously wrong that so many of us are not being listened to & have to go to such great length to get help.

Kerstin I thought I was going to blow a fuse mt blood pressure must have been high.

Lets hope now i cant get some relief. Take care x

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