Sticky Blood-Hughes Syndrome Support
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soz not been around recently, I am still 'hanging' in there!!

soz not been around recently, I am still 'hanging' in there!!

Hi to all, soz not been around for a while :( missed you all, I've looked in every now & then & checked in on you :)

I hear you're missing me jet !! ;) I'm still here.....I just won another pair of boots on ebay to get me kickstarted again!!! not as nice as my other ones tho'!!

I'm still around, poor Paddy was worried too :(

I've just got a lot on at home at the mo' trouble with family stuff......

Also struggling with various symptoms, migraines, very painful bones & joints.....maybe it's the cold but it's starting to worry me, also keep going dizzy, soooo tired........

Had an appointment at a 'shrink' was what the neurological doc' suggested in London, so I went so not to upset another doc' & get kicked out of another hos' !!

The result was.....she couldn't understand why I was refered there as I was getting on with life well considering!!!!

Added stress of homelife doesn't help....but who doesn't have it !!

She says I cope well with it, with the hobbies I have, how I'm trying to raise awareness of it in my area, looking after animals that need help plus having a goal to start my own business up next year!

My blood had gone a little thinner than it should be & i've had a bladder infection ( like I always get when inr goes above 3.8 ish ) so been on anti biotics again.

Docs were considering steroid injections to my joints when I spoke to them on the phone earlier this week? I don't think I want that if I can help it!

Also want to make an appointment to see a dietician I can be given a list of everything to avoid, what to have more off, what in moderation etc & which suppliments I could take....... been meaning to ask to see one for ages.

Still waiting for phone to be put on too!! been over a month now....I want to chat to local papers to make appointments to write articals about APS to raise more awareness here, something else that got put on hold....but I'm getting there!! :)

Not forgotten any of you......thinking of you all as always, hope you are as well as can be :) xx

22 Replies

hi my friend- so sorry to hear of these problems ,i was honestly worried for you in your absence. sounds like a tuff road you are traveling, but i believe in my heart that you have the fortitude, perseverance and just your lust for life will see you thru these rough times. as you are much to good a person to let this get you down . lets hope for more good things to come to us in the near future. [ glad you got more boots ] and i did say boots!!!!? dont stay away so long ok!!! always here for you--- your friend - jet


Thanks bud!!

you say such nice things :)


Kind words from others, help any condition also good laughter, it all helps in the right direction, at least in my house it does. Mary F


Thanks hun...yep we do too.....most of the time!!

It does help a lot I agree!! : ) x


thanks to you paddy- your always there .---------------jet


lol your welcome mate


Hi hon

Will ring you, if i don't, shout at me!! missed you too :-(

Glad blood thinner, definately knew you not depressed just pissed off with hurting!!!

Family, sometimes they do your head in don't they!! Mine too. :-(

As jet says your one of lifes fighters, sending big but gentle hugs :-)

Take care love Sheena xxxxxxx :-) :-) :-)


Hi hun, missed you too.....think girly night is on this Tues coming if you want to join us? give us a bell when you can :) xx


Feeling left out here may have to put a dress on and gate crash lol



Ok Patricia!......come on down & join us! everyone is welcome! & I'm still trying to get around to making that meeting that hopefully some of us can meet up to chat :)


Hi Suz,

sorry you are rough at moment. Sorry haven't rang you but have had few problems leading to muzzy head etc.

Pleased you had positive meeting with Neuro bod, still waiting for mine has been 6 months now!

Take care dear friend send Auntie Sue's love to the critters x


Hope you are a little better now :( I told Salem ( sugerplum!) you said hi :)



Big hugs to you're all so lovely & we know how each other feels with our usual struggles.....

yep, new boots jet!! I'll keep using my other ones tho'!! :)

I promise I'll try not stay away so long next time....

Yep would love to hear from both of you....give us a bell....I cant ring out!!! :(

Went to docs earlier & he agreed with me not to have the steroid injections unless really needed.

I forgot :/ to ask about the advice of a dietician!! duh!!

My inr was checked & now its gone down to 2.9!! we cant understand it as if anything it should have gone higher with the antibiotics ??

Furry critters were up to mischief when I got back earlier!!

I went with my Mum today to join her as I sometimes do to her weekly dancing at a nearby club & when I got dropped off back home I went to clean & feed everyone & the rabbits had broke their door down again! & were running around their run & in my shed! they had ripped bags open, trashed the shed & after I cleaned that up I went to the ferrets & the 2 new girls 'Mischief' & 'Bonnie' kept climbing out the run & I had to go & get them!!

is it a full moon today :)



Hi Sue,

As everyone above have said we all have our down days when we feel alone and people do not understand the pain or stuff we go through but i agree whole heartedly with all the above you are one of peoples fighters and i believe if anyone can pull through it is you and considering everyones calling you i am going to as well lol

Look after yourself and you know we all here if you need a cry, laugh or rant not in that order but hey you have friends.



Ok, feel free to call me too! :)

It's good to talk.......thank you for thinking of me.......I didn't mean to worry anyone by not being on here for a while whilst I was trying to sort things out......

Nice to know you all care :)


lol as long as you ok you know we all here to help


hay suzy -you arnt feeding the rabbits any steroids are you - rabbits braking down doors?? wow you have some different animals over there!!!!!!!!! send me more pic of the girls nite out and get patrica in there to . i got to find the ones that our sheena sent me, ifogot the date sent- getting new fax ,printer,copier ,skanner i think today?? may i can learn to fax and all that stuff??????-------------------------- jet


No its the spinach !!!! : )

I'll get you some images of girly nights out & one of our bands will be playing at Sheenas pub for a childrens charity soon on a 'rockathon!' so I'll get you some images of that too :)

They are playing a 15 min' set each at 10 pubs on a Sat' night then the same on the sun' night!!

I'm one of the 'bucket' girls!! (with camera of course!)


OOhhhh this sounds like a fab idea maybe we can do a ROCAPS THON for APS lol glad to see you being put to good use Suzy lol



now what boots does this gig require- its great that the people are doing this for charity- i got to get some adresses for some off you. you can get my personal info from sheena and she knows its ok for you to have it. kristina naturally has it - but with the problems i have had on this site i wont put them out. she said she would be talking to you .great time to get them if you would like. gotta go for now - always a pleasure . our bucket girl ??? hope to see you on my personal site soon ------------------ jet


Ok Jet security has been tightend on the sight they not sure as to why you had issue you are an enigma but i said you were a prominent person in the community and you were not red flagged with any of your personal datathat you had given to us all now Mickey Mouse how is Disneyland lol

Seriously will keep on but as far as security on the Health Unlocked site it is as tight a forteknocks, the only suggestion they can coume up with is maybe if you have done any online shopping sometimes issues can occur when secre info gets slipped when your computer crashe as we have never had anyone else have the issues you had. Please do let me know if you have any issues but its been fine now for over a month?


paddy- thanks - i haven had aproblem in awhile , i will tell you i found it was not only his site. ive got a new set up coming next week- my nephewworks on line rebuilding and referbushing -hes building me one that is 100 times better , 8 gig -6 core prosser, dvd reader/burner, new wireless keyboard and mouseand a whole bunch of stuff he didnt list {{mind you i dont have a clue how to use it ]] but even a blind dog finds a bone sometimes??im just going to have to learn -- he said the only things he may have trouble with is this site and my -- mydh site [ dartmouth hospital acc. ] but well see what happens if i needed help i could always -e-mail sheena , that shoudnt be efected also thinking about one of those camera s that you can see who you are takling with -- do you guys have them?? let me know what you think ????? stepping up jet


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