Argh! Lupoid/Blonde Moment Or Is every1 else gett... - LUPUS UK

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Argh! Lupoid/Blonde Moment Or Is every1 else getting confused by this new layout?

Sher78 profile image
13 Replies

Hiya fellow lupoids! Just 2 let everybody know, yes, I am still hanging around making a nuisance of myself & generally challenging ( ok, arguing with ;) ) my medics when they try & do this, that & the other (I wouldn't b myself otherwise!) & apart from frequent really bad heads & constant MCT pain, I'm not too shabby :D

I HAVE had a quick gander at the forum (I am no longer a volunteer, boo hiss!) & I must say I'm either being totally & utterly stupid or either suffering really badly from being a ditzy blonde lupoid but I can't seem 2 get my head around this whole new layout etc. I can't find my friends!!!!!!!!!

Hoping 2 check in more regularly again now that this month is almost over (this is a funny month 4 me, it signals the point of my health coming 2 a head, dying, the death of some extremely close loved 1's & also many birthdays so I struggle with my emotions every September) just as long as I can work out what the chuff I'm doing :D Big love 2 all x

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Sher78 profile image
Sher78
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13 Replies
-fudge- profile image
-fudge-

Hi I am new to all this but do find forum bit confusing to just post an update or reply to the lovely people who replied to me...its a great source of info though and im sure I will get used to it soon. Sorry to hear you having tough month. Big hug

frog profile image
frog

So glad you are back, I have been missing your company, looking forward to reading your updates. Take care.

roobarb profile image
roobarb

Hi sher, it's good to see you back. It took me a while to get used to the new layout too. But I am a major technophobe, as you know from my attempts to post links in the past! Take care, my dearie. X

pattismith profile image
pattismith

Good to see you back again, been wondering where all the people who used to be on here regular have all gone to ?

Sher78 profile image
Sher78

Hiya fudge & welcome 2 u (although I'M the 1 that feels 'new' lol!). Frog, roobarb, pattismith, SO nice 2 c some familiar names & pics pop up, I thought every1 had buggered off & got cured without me ;) x

caz59 profile image
caz59

Hooray! was wondering the other day were you'd gone Sher78. I can relate to you when you say September is not a good month for you, I do not look forward December as a lot of tragedy happened for our family then. Yes this site, I am not keen on, have had to put questions on the site cos I couldn't find my previous blogs as they used to be called and questions duh! luckily Paul put me right. So missed your hilarious way of putting things into words, and so relieved that you have not been on the site because of major health issues.

Take care me darling

caz59 x

Sher78 profile image
Sher78 in reply tocaz59

aw thanks caz59, it's lovely 2 c all these familiar names pop up :D Been concentrating on my FB page in between taking lots of kips but once I've sussed out what I'm doing on this site I shall b telling u all about the many aphids I encounter (as u all well know muppets seems 2 fall in2 my path quite regularly ;) ) x

janekins profile image
janekins

Hi Sher. Welcome back on the site! Will enjoy reading your future posts. Take care x

Sher78 profile image
Sher78 in reply tojanekins

Thanks janekins :) Still trying 2 get my little ol' head around all this new fandangled malarkey on here ;) x

Purpletop profile image
Purpletop

Hiya, welcome back. How's it going? Have you resolved anything with the Sneddon's tests?

Sher78 profile image
Sher78 in reply toPurpletop

Hiya Purpletop, glad 2 c u're still milling around the boards ;)

Unfortunately not, 'Mr. Fantastic' hasn't got the faintest chuffing idea what he's looking 4 so has decided he needs 2 do more research & confer with Haemo & Neuro b4 he comes up with a 'Plan of action'. $ chuffs sake, just give me the bloody biopsy & save us all a bit of time! Yes, I am still loving my Rheumy muchly & have a fantastic rapport with him ;) x

Purpletop profile image
Purpletop in reply toSher78

I don't think there are many specialists in Sneddon's in the uk, that's the problem. How are your neuro symptoms, improved?

Sher78 profile image
Sher78 in reply toPurpletop

2 my knowledge I think there r literally only a couple :/ Sods law I guess but saying that, there weren't many rheumy's 15 years ago that really knew much about lupus so I live in hope ;) Comes & goes, I have been running my INR slighter higher & this seems 2 help with the hallucinations & 'hormonal episodes' (as my rheumy calls them. Hmmm, wonder if he'd still call them that if I went off on 1 in his presence?). Also had my anti-psyches changed again but neuro wants me 2 go back & have retests etc 2 c if there's a difference in the sets of results so just gotta wait 4 them 2 sort that. Will talk 2 neuro about sneddons & also haemo when I c them. How u doing chicky? x

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