The (not so old) Crocks Cafe

bigzippy

LameWolf wrote: »

That's an understatement! The air around Milton Keynes turned a vivid shade of blue!:eek:

Sounds familiar:p

suep

still no news ( sigh.....)

LW that sounds really painful, I'm impressed you still went ahead with the baking. Shame you missed the moot, I'm going to a workshop in a couple of weeks where we are going to make magical Yule gifts, can't wait.
Hope your hand heals soon.

Did anyone watch Paul o Grady tonight ? I love that James Wong who does the herbal remedies and have his book, the phone went and I thought I heard Paul mention that James is starting a new series this month and theres going to be a xmas special, I've looked on the BBC2 website and cant find any mention of it, was I hearing things ?

cydney65

Hi guys,

I hope you don't mind me posting I've lurked on this thread for a while, following you all. I need to vent if that's alright?

I was officially diagnosed with lupus by the rheumy last week (I already have RA and I suspect I have fibro too) and prescribed Plaquenil. I took my first 200mg this morning and had a major allergic reaction, swelling face, chest pain, about hour later. I have a lot of allergies which are probably related to the lupus. Goodness only knows what would happen if I was in an accident, I have horrendous problems with antibiotics. Anyway, I did what I always do, steroids and anti histamine before ringing the rheumy nurse.

I'm so fed up now. Everytime I'm given something to help, it ends up making me worse. I get all my hopes up that the pain will go and it doesn't. This time is doubly worse as I put myself on a special diet after I had a massive reaction to some anti fungals for candida overgrowth in my lungs-I know too much information -and not only has the diet helped the thrush but it seems to have stabilised the lupus symptoms. This evening it's all hit the fan, the thrush has gone mad, the pain is bleurg and I have major indigestion because of the steroids.

Seeing the GP tomorrow because pain meds aren't working so well and sleeping gone to the wall. I really hope he can help, he is a good GP but you never know, perhaps I'm just getting cynical.

Sorry to ramble on as I know you all have problems but I'm feeling pretty tearful tonight. OH is great, she's making me tea but I know she gets so worried about me and she has MS so isn't good either. Couple of crocks eh.

I feel a bit better now for typing it all out. I haven't got any biccys to hand round but I have been making sock monkeys to help keep my mind off things. Anyone want one to cuddle?

Gentle hugs to everyone and sorry for taking up your time.

CydneyX

bigzippy

Bet you're on pins aren't you suep??:rolleyes:

cydney65 wrote: »

Hi guys,

I hope you don't mind me posting I've lurked on this thread for a while, following you all. I need to vent if that's alright?

Gentle hugs to everyone and sorry for taking up your time.

Of course we don't mind you posting, or lurking, it's nice to hear from them that's out there Venting is always fine and, infact, encouraged here! The only proviso is that you're not allowed to apologise for things like "taking up your time"

I really hope the GP can help you tomorrow. We know how frustrating it is, and although I can't offer you much more than virtual hugs, you're more than welcome to stick around

The more I hear about lupus the more I worry that I may have it. My allergies and allergic reactions just seem to be getting worse, and I seem to increase immunity to the antihistamines they give me. I'm told fexofenadine, of which I'm on the highest dose apparently, is a strong one - anyone know any different? I'm becoming more and more convinced that the allergies and worsening asthma and IBS flare frequency is more to do with an autoimmune disease....? Am I talking crap?

I'm freaking furious with the hospital MIL's in. She's a known diabetic, known to the staff, they have her insulin in their fridge, and yet even when she's been asking for it they haven't been giving it her?! :shocked::mad: So since Fri night she's not had her nighttime insulin. ARGH!!!

cydney65

Thank you BZ (is it ok if I call you that, I kept up with your wedding and honeymoon, big congrats btw :beer:) I'm feeling a bit better now, although the antihistamines have made me feel really tired. I tried watching I'm a celebrity but got peeved with the adverts, perhaps I'll go onto ITV catch up tomorrow. Gonna take some pain meds in a mo and go to lala land hopefully.

That's terrible about your MIL, absolutely outrageous. Unfortunately I've witnessed something similar. I used to be friends with a lady who was diabetic. She had to go into hospital because of it, but she was a bit of a smoker. Because she kept going out for a sneaky one and the nurses didn't like it, they took her food away and then said she couldn't have her insulin! I kicked up such a stink, went straight to the 'sister' and went mad. My OH used to be an old fashioned matron (oooh hope she doesn't read that, she does lurk on the boards sometimes) and I know she would never have tolerated that sort of nurse behaviour. I have to admit most of my experiences with nursing staff have been good, although every profession has exceptions. I hope it all gets sorted.

edit: OH wonders whether they have altered her dose or timings due to when the food arrives? They may not have informed her or explained it to her if that is the case. If she isn't happy then she needs to talk to the doctor when they do the rounds or you or hubby can and hopefully he or she can sort it out. HTH

Hugs to everyone and sleep tight.

CydneyX

Careful_with_that_Axe

cydney Welcome - nice that you decided to pop your head up. I have Lupus and also Mixed Connective Tissue Disorder along with some other bits and pieces. I, too, was started on Plaquenil and had much the same experience of allergy as you. I had the same reaction to Azathioprine and Methotrexate, but that doesn't mean to say that the same will happen to you if they are prescribed, I hasten to add.
It can be a bit of a journey to find some treatment that is suitable for you and effective, but with everything tried you are a step closer to finding something that gives you some relief. I know it's disappointing when something you have high hopes for turns out not to work, but stick with it and you will get there in the end.
Sorry you've had such a rotten time.

jazabelle

Just wanted to welcome cydney!

Congrats on the diagnosis! Obviously it sucks as well, but always good to at least have a name to it, I think.

Really hope your GP can help you, and I'm sorry you're feeling low.

Please stick around, it's nice to have you!

bigzippy

cydney65 wrote: »

Thank you BZ (is it ok if I call you that, I kept up with your wedding and honeymoon, big congrats btw :beer:)

But of course And thanks! People keep asking how married life is and my pat answer at is "superb...apart from this sodding ankle!"

cydney65 wrote: »

That's terrible about your MIL, absolutely outrageous. Unfortunately I've witnessed something similar. I used to be friends with a lady who was diabetic. She had to go into hospital because of it, but she was a bit of a smoker. Because she kept going out for a sneaky one and the nurses didn't like it, they took her food away and then said she couldn't have her insulin! I kicked up such a stink, went straight to the 'sister' and went mad. My OH used to be an old fashioned matron (oooh hope she doesn't read that, she does lurk on the boards sometimes) and I know she would never have tolerated that sort of nurse behaviour. I have to admit most of my experiences with nursing staff have been good, although every profession has exceptions. I hope it all gets sorted.

Aye, I know that there are staff that are superb, and I don't mean to tar everyone who works for it with the same brush....but sometimes I can't help but vent about the bleeding No Hope Service! It's frightening the treatment that she's had (or not in a lot of cases :rolleyes:) over the last couple of years alone, nevermind what I've experienced personally myself. I know mother's who've said they've enjoyed the break of being in hospital....but I just can't see it. Even when I was a teen I had to fight for everything

cydney65 wrote: »

edit: OH wonders whether they have altered her dose or timings due to when the food arrives? They may not have informed her or explained it to her if that is the case. If she isn't happy then she needs to talk to the doctor when they do the rounds or you or hubby can and hopefully he or she can sort it out. HTH

No she self medicates during the day, for the meals - which they usually mither the life out of her about so they can record, believe it or not - as she has a clicky pen for it, as she's nearly blind. But the lantus she has at night is kept in the fridge and is for before bed....which is what they've not been giving her. And even if she was allowed in the fridge herself, she's not very mobile at the best of times, never mind when she's ill. As for talking to the doc...she's still not seen one. She's been in since Saturday.

Sorry this has been a bit of a rant, thanks for your interest and glad you're feeling (at least marginally) better.:) I'm off to bed with hubby now methinks, having forced him out in the cold to walk the woofies Plus I just can't sit on this uncomfy couch anymore! Talk about pelvic pain....:o

*takes self off before rambles on moanily again...*

morag1202

suep so very sorry to hear abt your gran, glad you got to say goodbye and I do hope that her death doesn't set your dad back. How is he? got everything crossed for your dil

bz good luck with the LL - glad you are making some progress, allbeit too slow :mad: hope the dozy nurses wake up to the importance of background insulin, no wonder you are worried.

lw sorry you were so low, I wish I knew how to convince healthy medics that just cos they can't understand why it hurts, doesn't mean it doesn't hurt :mad: Sorry you missed the Moot too, hope the cut heals soon.

cydney welcome sounds like you are entitled to a rant

cwta are you any less tired? how is your dad? how did the rhuemie appt go? hope you are less sore.

pcl wish I could make it better, for us both? genuinely thought rhona was snoring a few nights ago, it does take time

paw awful news abt your bro, you must all be so worried, how is he?

:hello: to everyone else, esp sharon hope you are all ok.

I seem to have fallen off a cliff since the clocks changed, no get up and go - so I have neither got up nor gone This is nothing new for me, GP thinks SAD but we are both reluctant to mess with my existing meds cos every time we do I start having panic attacks again, which is far worse. Do the daylight bulbs work any one?

And has anyone had the swine flu jab yet? I've got mine on wed and I hate hate hate needles

Must go to bed, I am my own worst enemy, if I got up earlier I'd see more daylight duh

suep

Yay, baby girl was born at 4.48 this morning and weighs 7lb 14oz, I cant wait to see her. It's also my nieces 9th birthday, she had said she wanted the baby to be born on her birthday, bless.

cydney I'm glad you joined us, but sorry about all your health problems, I remember the feeling of pinning all your hopes on one med and then being let down, in time you wont do that anymore, there is no magic cure Im afraid, sorry dont want to upset you more, hopefully in time you will find the right combination of meds that will just help you to cope with your symptoms a bit better. In the mean time we are here to listen and offer support, and that goes for any other lurkers out there

Morag Dad does seem a lot better since having the new private treatment, he's put on a few pounds and is eating a lot better, we will find out more when he has a scan in a couple of months. Obviously Im worried his Mums passing will set him back but he has a lot of support.
hope everyones ok x