Re dryness back: Hi barnclown and maureenpearl... - LUPUS UK

LUPUS UK

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Re dryness back

Circles profile image
7 Replies

Hi barnclown and maureenpearl thanks so much for your replies.Sorry its late in replying just home from work as I work evening shifts. I feel I am really just learning how complex all this is.I believe until you are diagnosed with something its like a need to know basis where docs and consultants are concerned.I'm only now starting to join the dots myself and feel so stupid it has taken me this long. But I never knew anything about autoimmune disease until it came knocking for me.I thought at first 5 years ago this was menopause lol.Have been going around in circles since hence my name.At least I have learned so much from this forum going forward I am determined to get this sorted so I can get my life back well what is normal for me anyway.Feel this has been going on since my late teens but all came to a head when I was 46 ish. Sometimes I feel a fraud as I know a lot of you are dealing with a lot more serious health issues than I have at the moment but maybe that could change. And will deal with it if and when it happens. Had one gp who frustrated me so much left the surgery after being referred to my rehumy.And in that surgery since a 2 year old. Thanks again for helping me understand a little more.

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Circles
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7 Replies
Barnclown profile image
Barnclown

hello again circles: i think you're name is great & i think your description of (haha) 'the onset of the diagnosis & treatment process' is spot on! dare i say it: your description speaks for virtually everyone who is setting out in this weird alice in wonderland world.

it's taken me 4 years to get the hang of this diagnosis & treatment stuff...seems to me i've been was much slower on the up take than you have. and yikes, it's turned out, that before those first 4 years of mine, i'd been living with lupus and its secondaries for 50-something years totally unaware that this was at the root of my weird and wonderful health odyssey.

replying to your ? yesterday helped me appreciate how much this forum & my 'good' medics have done to convert my life from mainly C***-with-a-brave-smiley--face-on-it to more like YES: HOORAY!

am wishing you all the best: it's great your here!

xo

Barnclown profile image
Barnclown in reply to Barnclown

eeek: grrrr: am trying to correct the typos in my repoly (above)...but HU's edit function won't let me...this prob started yesterday...on both my ipad & imac....is it just me, or is something a bit wrong with the system here on forum?

Circles profile image
Circles in reply to Barnclown

Not too sure if its the system but your reply was fine no typos that I can see. Thank.ks Barnclown

Barnclown profile image
Barnclown in reply to Circles

Thanks: am glad you don't notice them...there are only a few & they aren't that important...but I've just now had a reply from HU Support: they say they're aware of this problem and are working on fixing this & other system malfunctions now...👌👏👋

littleeffie profile image
littleeffie

Couldn't post or reply yesterday at all as system wouldn't let me .Thought I had done something naughty or become more stupid than normal.

Hi barnclown, had to smile at your "yes :Hooray," Actually felt like that on Friday as no appointments! Another week of them next week.Monday states it could be a three hour one on letter so packing a picnic .

Doing OK?

littleeffie profile image
littleeffie

Hi again circles, do like the name ,as just posted to barn clown been unable to reply or post .Glad you are here and getting to grips with this not so merry go round that accompanies Lupus and associated stuff.I think in general society has no understanding of auto immune illnesses until they or one close to them gets the tick box.It does help to get a diagnosis but in the end life just becomes a learning curve ,ok sometimes a boomerang that comes back and hits you in the face or knocks you off your feet, but at least learning how to adapt or understand can be a positive distraction.

Good for you not putting up with second class treatment by gp .

Take care and hoping things get easier for you.

Circles profile image
Circles in reply to littleeffie

Thanks a lot for your reply.It was my GI consultant told her to send me to reumy.Was in and out of hospital for tests that's how the chronic pancreatitis was found.Ex gp was in no hurry to help me get to the bottom of all this.When I left the surgery and transferred my history they sent history since I was 36 only. I told new gp about misscarages and she sent me straight back to reumy who then took a better interest and diagnosed me with Raynaud's mentioned sjogrens and lupus syndrome.She has gone doing locum work since so in searce of new doc again.Thank God she was clued in and I thought she was great.I have health insurance but pay half myself so have had everything done privatley for past 2 years. Even gp visits cost 50 Euros here in Ireland.Ah well all worth it to feel even a little better lol.

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