Meeting date for Staffordshire for AN... - Hughes Syndrome A...

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Meeting date for Staffordshire for ANYONE that can come!

Suzypawz profile image
14 Replies

Hi, I am your area leader for the Staffordshire / Derbyshire area & If you can make it I am holding a meeting at The Stanhope on 28th April at 4pm onwards, we could have some food there if you wished & it's a Costa ( so I'm happy! ) here is a link for it, as there is also a premier inn there too if any one wanted to stop over! I hear it's very reasonable.

premierinn.com/en/hotel/BUR...

You don't have to be in the Staffordshire / Derbyshire area to join us, you are all more than welcome, the more the merrier!! :)

would love to see you there :)

If you cant make this one, don't worry I will be setting another meeting in Sep' / Oct' time too.

Hope you are all as well as can be :)

Hugs, Sue :) xx

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Suzypawz profile image
Suzypawz
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14 Replies
jetjetjet profile image
jetjetjet

suzy - did you make it to st T yet ? how are you feeling , just heard my comp . sound off and it was YOU HORRAY !!!! . thought id say hi -ok then ------------- me

Suzypawz profile image
Suzypawz in reply to jetjetjet

lol...hi jet! :)

I'm still not great...but who is?!! my skin on arms are burning, torso feels bruised now too, everynow & then still feel like I'm going to pass out or I fall forward? had a lie in bed today, only just let pets out & fed them, now done me a piece of toast, I'll take it a little easier today.......how are you? any results yet?

jetjetjet profile image
jetjetjet

the sleep apnea think is going to be adressed on 3-14 -12 with rheaumy- i was seeing alot on the site of low tertosterone- i e-mailed rheaumy s nurse and ran it by her --- she said lets mention it to dc Chou , checking the testosterone be good ,but there is alot involved in any glandular disruption. but she doesnt think it would be the answer for for me ,with all my problems. you know .i am taking a liking to her as i feel very trusting of her in the short time i have been dealing with her. i still havnt met her face to face yet but we both think this would be good- she s always rite there when i go on ny mydh account.she also works the pediatrics unit- but still she always gets back to me in short time. i told dc chou i wanted a meeting with her , he said i dont normally do this but with me he would ok it. last couple of trips up there i missed her, but she knows we can do this and are working on it - me my self i always seem to do better with medical people if i can have a one on one with them!! she has said [ you are a rare one ] i also asked her if i was to much for her . no she replied - at times i wish alot more of the patients were like you. youre one of a kind, and always very gracious. i try hard to be as good as possible with Jill as i know she goes out of her way for me!! no matter what i ask or how silly it may seem , she has always been there for me with help. really looking forward to the meeting- 0- who knows maybe on the 14 th . you rest up , dont over do it , hopeing you get a handle on this ---------- your friend --jet

Suzypawz profile image
Suzypawz in reply to jetjetjet

Cheers bud & good luck with it all....Sue :)

jessielou profile image
jessielou

Hi suzi

Hope you feelin better today hon.

Is great meeting up with you for a chat and a few laughs, is good knowing you're not alone!!! I'm from leicestershire so not too far, will be their hon.

Kids, Pub and health permitting.

Sun is shining, out for walkies with 3 crazy dogs, might cheat and take Sheena's wheels for a spin!! (my trusty scoot).

Have a good day hon.

Take care gentle hugs love sheena xxxxxxxxxx :-) :-) :-)

jetjetjet profile image
jetjetjet

god morning my pretty- sounds like a walk with the dogs is a positive one . great to hear that. you mention your scoot- am i rite assuming a motorcycle? if so what is it ???????? if things dont get straightened out with me and finacial i may have to sell one of my pride and joys. a 1973 tr7rv- triumph 750 tiger- it has13000 origional miles- hate the thought of it , it sickens me , but dont know what else to do . my friend passed away saturday morning. i dont think i mentioned ,Don is not only one of my best friends of 40m years, he is also my roomates brother - i have been trying to comfort her thru this , going to be a hard week . shes doing well rite now but reality ,i dont think has set in yet,spent the day doing house chores,as i expect friends to start stopping by today. i told her he cant suffer anymore , hes in a better place now.he had a heart as big as the world, needless to say ,he will be missed by many.espeacially roomie Mary . she went with her only child , her daughter Kelley for the day yesterday , shopping , she needed time away , and it gave me time to do my womanly house cleanig jobs. i dont mind doing them thou, i cook , clean . and do all house up keep as this is our lives arangement. being a confirmed bachelor all my life {SO FAR ANYWAYS} i always did this stuff anyways so it doesnt bother me. o well enjoy your day and hope to hear from you and maybe our princes of lite soon . as always your friend ----------------------------jet benny

Suzypawz profile image
Suzypawz in reply to jetjetjet

Hi I'm here bud, nice bike by the way :) I hope you & your roomie will be ok with the loss of your dear friend :(

It is always hard to lose someone close.

Don't think she would be taking the dogs for a walk tho' bud on a bike!! :) They would never keep up!

Hope you enjoy the day out with the dogs wether by foot or scooter hun, it's lovely out there....I've let boy bunnies out, guinea-pigs & ducks out this morning, done 2 loads of washing, hung that out, everything is still crunching & popping! I'm starting to sound like either rice crispies or popcorn being made here!! :)

Hugs to you all from 'the princess of darkness!!' or light as jet says! :)

jessielou profile image
jessielou in reply to jetjetjet

Hi jet

hope you and your friend get through ok. A friend of ours mum has just passed away. Awful thing is his dad probably wo'nt be long in following her, our friend had a massive heart attack last year, so unfair, its always the good in this world that get the s###!!!!

No jet my scoot is mobility scooter, my days of riding motorcyles are overs. Yours a fantastic bike really hope you don't have to sell it.

Love n hugs to your friend.

Take care gentle hugs love sheena xxxxxxxxxx :-) :-) :-)

jetjetjet profile image
jetjetjet

anyway you put it as long as your there - thats what matters to us .glad your up and moving !!! [HORRAY] i know when i walk - with ankles ,knees, hipps - it is the snap, crackle ,pop- when my rheaumy heard me stand up after getting into robe for 1 st examination phyical- he said boy are those noisy , ya -i told him its like chimes at times when i walk, HA you should be ricecrispies thier better for you ???????-------------- dimly lit benny jet

paddyandlin profile image
paddyandlin

Hi Sue,

this sopunds like a great idea, i may not be able to get to this one but defo the next one and i hope to see you in May in London.

Paddy

Suzypawz profile image
Suzypawz in reply to paddyandlin

cool look forward to meeting you in London!!

Yep I will have the meetings in Staffordshire a couple of times at least every year so if anyone cant get to one they may be able to get to another.....& I dont mind waiting when theres costa coffee to be drunk!!

paddyandlin profile image
paddyandlin

Hey sue maybe we can alternate one up your are then one down here !!! that way we can give uk memevbers a option what do ya think

paddy

Suzypawz profile image
Suzypawz in reply to paddyandlin

Yep sounds good to me :)

kateb81 profile image
kateb81

Hi sue. Sorry for my delayed reply... I'm not sure that I'll be able to make the meet on the 28th April just because I don't think I can afford the fuel... I'm also having a flare atm which will fingers crossed have gone by then but I think my pregnancy is taking it's toll on me atm... I hope you all have a Fab meet and I really hope I can make the make next one ... hugs kate xxx

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