Hi all
Just wanted a moan. I am having a week of really aching bones and joints and am putting it down to the damp weather we have here at the moment. Even my toes are aching!
Does anyone else hate the damp weather?
I could do with a week of sunshine, somewhere hot and relaxing witha nice beach! Must buy that lottery ticket today!
Angela
Know exactly how you feel, Angela. It's miserable innit? Everything hurts, especially my right elbow for some reason! Plus, I got an email from my GP to say my iron levels have plummeted since that bloody vomit so have to have 'double-ended' endoscopy 
Don't see why, as I'm sure it's just bleeding ulcers. Actually, I think I'm going back to bed now for a good 'sorry for meself' cry and a long and much-needed sleep.
Roll on summer! Or big lottery win. We won 6 grand a few years back and I hate to sound greedy but it wasn't enough! Paid a few bills though
Ooh, my darling, big comforting hugs coming your way - with a nice hot cuppa and some chocolate hobnobs xxxx
Same to you hun! I am at work though so struggling. As soon as I finish work I am heading for my bed with a hot water bottle and a good book. (If I can hold it without aching too much lol).
I had the double ended endoscpy last year only to be told that I have a inflammed bowel and stomach. Well I knew that anyway!! This illness is a never ending pain in the arse!!!!!
Bigs hugs and I'll join you in that 'cry' when I get home!!
Angela
I've been there too with the double ended endoscopy, not nice but at least knowing for sure what is going on inside helps me make sense of symptoms. I have ulcers in my illium and struggle to put or keep weight on.
Been on Aza for about 5-6 weeks now following a high dose steroid injection and think it is starting to make a differnce, well hoping anyway!! Am starting to feel better so am heading in right direction.
Are you reading a good book?
I have upgraded my hot water bottle for an electric under blanket. Nice and cosy x x
Reading James Patterson's recent book. called 'I, Michael Bennett'. It's very good actually!
Have you read any of Mark Pearson's books?
petersfraserdunlop.com/Auth...
No I dont think I have, will have to look them up as I read all sorts of books and am willing to try any Author
X
He has co-written with James P which is why I thought you might like his books. I was supposed to be meeting him today (Mark that is) but too poorly to go
I have to admit though, I don't actually like that genre.
I think I must be a Walt Disney girl at heart, but even the wicked witches used to give me nightmares!
Oh my goodness, I recognise the name now. I have read every single one of the Paterson books and cant get emough of them. I had tickets for a Waterstones signing earlier in the year in Birmingham but was too poorly to go as I live 2 hours away. Was absolutely gutted as am such a huge fan of James P. Lucky you knowing Mark. I hope one day I get the chance to go to another book signing. But if not I can just carry on reading his books. My mum is a Catherine Cookson type of girl and I have got her reading the Womens Murder Club and she is now addicted !!!! I have just also started the life story of Mozart but struggling to get into that one as quickly as my James P lol xx
I know Mark via a comedy thing we both used to belong to - we helped each other with a couple of projects (he helped me far more than I helped him!).
We first spoke years ago and email each other but so far, EVERY time we've arranged to meet I've been ill. Ah, actually there was one time when I was well but he had to go to a meeting at the last minute. LOL, one day I will make it.
He's a really lovely guy and if you do get around to reading his books please let me know what you think, I know he would be chuffed to get some feedback.
Bless you hun, having a double ended endoscopy is just horrible, I had one a while back and it's not nice. Best to get things checked out though so you know for definate what is going on. Not wanting to scare you but you probably know already anyway, ulcers can perforate the gut!!
Good luck and take care x x
Sweetie, I don't know how you manage to work! Mind you, I do miss the social interaction - the laughter (and tears too sometimes in my job). I used to love being surrounded by people. I cheer myself up by thinking, well, I'd be retired now anyway. Most nurses/midwives retire at 55; well, they used to, don't know if they can afford to nowadays! The NHS pension scheme is/was good though.
Yeah, I had the bum end of the endoscope about 3 years ago but they couldn't get the tube all the way round so they ended up scanning me instead. I don't think there's a single bit of my body that hasn't been prodded, poked, and gazed at.
Oh, yeah, to top it all - I've got hiccups! How the bloody hell can I go to sleep with hiccups!?
I'm in limbo awaiting a suspected BD diagnosis, and I have felt really sorry for myself today...my eyes, my toes and my joints ache and I couldn't understand why. The roof of my mouth is finally clear of ulcers so I should feel better - but I dont
Anyway as crazy as it sounds you've both made me chuckle.
By the way do either of you have problems retaining urine after apparently emptying bladder??
Glad to hear you are managing to work Angela I so hope to get back soon...... though I have so many consultant appointments it would be hard to find the time right now, lol.
Thx both love Jill
Hello again Jill! Yes I have problems with urinary retention and I self-catheterise around four times a day because retained urine easily gets infected and I'm sure you know what a waterworks infection feels like!
My urinary tract was actually the key to diagnosing my BD. And I have episodes of very serious retention. What causes MY retention is scar tissue in my urethra from previous ulcers. The scar tissue both reduces the diameter of the tube as well as sticking it together. The catheter serves two purposes - 1) it gets the urine out and so protects me against infection (I also take daily antibiotics for prevention) and 2) by passing the catheter I stop the urethra from sticking together.
I'm glad we made you laugh. You will find that the majority of us have an excellent sense of humour even though, just occasionally, we're like rabid dogs on steroids and snap at anybody who dares come near. Not everybody else? Oh, okay that's just me then! 
*waves white flag in Dump's direction* Is it safe to come out? Phew.
My joints ache most of the time and feel worse when having a flare and in hot, damp and cold weather. I've aso had most things poked and prodded inside and out. We 'almost' get used to it don't we?
My next rear review is end of this month and I'm soon to have tests for bladder retention. Catheters have been mentioned so I might be coming to you for sympathy D.
I've been on holiday since Sunday, today is my first day out of bed for a few hours and tomorrow I go home so this isn't going to go down as the best holiday ever. Have managed to avoid hospital though so that's a bonus.
Starting steroids again today so hide all the food, move over and make room in that kennel!
Sad to hear you've been feeling poorly whilst on holiday. Hope you feel better soon and that your review goes as well as a review could go (If you know what I mean?).
x x
Darling I can't think of anybody I'd like to share a kennel with more xxxxxxxxxx
So sorry about your hols - I had an inkling all was not well too
Goodlife and others
Yes I have problems with retention. I can sometimes sit on the loo for 15 minutes before I feel empty!!! Not a nice image.
I didnt really think this was Behcets but after all your above comments it makes sense!!!! I went straight home to bed last night and yet again have the pain in my face, ear, neck and side of head which seems to be arriving every month for a few days. Feeling rather sorry for my self today but am sat at work (obviously not doing my work though)! and counting down the hours till hometime.
I cannot wait to get back in my bed again tonight!
Hugs to you all (oh by the way tigerfeet, I am on a radical health kick at the moment having been on steroids for 3 years and put on 3 stone, so I have stopped eating chocolate! That is really radical!!! lol)
Angela
Thankfully retention is one thing I don't suffer with.
I'm sat at work not doing much too, counting down the hours till home time, well I'm now counting down the munites as I finish at 12. Don't think I would cope with doing more that 3 & 1/2 hrs a day!! Reckon a bowl of soup is on the menu for lunch whilst watching Loose Women.
You take care x x x
Hi ya, Know how you feel hun. Having a cold that I can't shift doesn't help either!!
I had 3 numbers come up last week so won £10. Not enough for a beach holiday though lol x x
Sometimes I feel like an old lady with achy joints.
If only my ancestors has settled somewhere that gets decent weather!!!
You take care of yourself x x
Angela, good for you that you are chatting to us whilst earning some pennies....it makes me very happy
My work ethic will never be the same again since I've been this ill. Like many people I bust my ass, and worked long hours and yet after 10 months off sick I've had home visits but nothing as personal as a get well card.
I had a bladder scan as couple of weeks ago that showed I was retaining urine, and my GP has referred me to a bladder consultant...Urologist??
I got left with an impaired swallowing function after one flare, and am still having to visit the speech and language therapist to get help with that.
So I echo Devdumpling when I commend you for being in work. I aim to try a phased return after seeing the rheumatologist.
Happy day to everyone! Love Jill
Jill
I was a paramedic for many years and loved my job but have had to take an office job due to my Behcets. I am now longer in the Ambulance Service but am working for a Medical Service that deals with referrals from GP's. Very different and not exciting at all. But mentally I have accepted that I have had to do this but I miss my old job so much especially as where I work is next to the Ambulance Station where I was based for 9 years and so I hear there sirens all day and feel quite sad.
But on the plus side, I no longer do 12 hour shifts and I no longer do nights and best of all I only work one weekend in six, so much better than before.
I put on a smile everyday even though most days I am in pain and never moan at work. People do not even realise what I suffer with. I can try and pretend to be normal for 8 hours a day!!!
I have to say I want to scream today I am in pain and tired and have a headache but on goes the smile and carry on!!
I should have an equity card for my acting skills!!!!! Now there's a thought a new career perhaps! lol
Take Care
Angela (best do some work now)!!!!
Jill, do you know exactly what the problem is with your swallowing? How does the therapist help you?
I missed all the gossip!
(((Group hug)))
love
Di
p.s. the sun is shining and we have wall-to-wall Mr Blue Sky! That makes a difference too eh?
yes the change in weather does seem to cause me to ache more; and it is interesting that many of us BD folks describe the aches as achey bones... as it really does feel that way! argh! yes even sometimes my toes ache... i also still work from 8a to 445p and some days it is very hard to keep going the whole day... usually around 3 i have a cup of tea (Cardamon) and with that and a touch of lemon i can make it the rest of the way thru the day...
Any one else also have the really sore/stiff neck where when turn one way or the next that you cannot get it to stretch out? pretty much all the time like a tight rubberband.... ugh... especially when darn weather changes with the damp & cold..
my best to all.... hope you have a good day today.....or at least a decent day! hugs.
Hi all
Sorry but I gave in and had a Kit Kat with my lunch. I am still extremely weak when it comes to the nice things in life. A bit like my weak body today!!!!!!!
Hugs
Angela
I'll take your Kit Kat and raise you a box of jam doughnuts...
I would take the Kit Kat and raise you a box of handmade chocs in a beautiful red and gold box trimmed with gold ribbon and a bow, but I don't actually know what's in the box yet as I haven't opened it.
*listens for gasps of amazement, hears nothing, assumes everyone is in shock and stunned into silence*
So, anyway, I was saying, I haven't opened them yet, because I feel a bit sick from the pethidine but once the steroids kick in I shall probably eat the chocs, box AND ribbon and bow.
Lol
I don't seem to be getting email notifications any more I haven't been around cos I had no notifications so I thought nobody had written anyfink
I still get them but usually a day after I've read the posts.
sorry tigerfeet I missed your comment ((((again)))) d'hoh, I had a very badly ulcerated mouth with a flare and notice that I was choking on not only food but also liquid. I went to my GP who realised that I had lost my gag reflex so referred me that week back to my neurologist. I was referred to an ENT specialist who did the camera up the nose thing (don't know what that's called) he declared the cause was neurological...and it was back to the neuro to work out what had caused it. However, the ENT specialist sent me to a speech and language therapist who observed me eating and drinking and wrote a very technical letter explaining how the swallowing function was impaired.
She scared the poop out of me by telling me how dangerous choking can be, and explained how high risk of seriously choking.
One of my fave things was always to drink quite a bit of wine with hubby, walk round to our local INdian restaraunt and have a curry and drink more wine and stagger home. I'd had several upsetting choking episodes in there, and I now can't drink alcohol before eating.
How come I havent lost weight????????
Jill
Di..... Mr BLuesky is one of my favourite songs.
Tigerfeet...I am a prolific reader so I just bought a Mark Pearson book - Hard Evidence
Ug, I hate the camera up nose thing. Jill, do you know if your gag reflex/choking problem can be improved? I know in some cases nerves are not actually damaged, but responding to trauma, then they 'forget' or 'can't be bothered' to do what the brain tells them, so there is potential for improvement. Have you had a videofluroscopy or barium swallow xray?
You haven't lost weight because it still counts if you eat chocolate hiding in the bathroom, standing up, behind the cupboard door or if you replace it before everyone comes home and claim that the brown stains round your face are gravy.
No? Is that just me then?
Enjoy the book, let me know what you think of it. Perhaps when the forum is re-organised we could have a non-BD section to chat about things like music and books.
*Wheels off into the sunset singing "Hey you with the pretty face, welcome to the human race. A celebration, Mr. Blue sky's up there waitin' and today is the day we've waited for"*
The video and barium are the next step, though I forgot to say that the therapist taught me habits to prevent me from choking as in tucking my chin down when I am eating and not being diverted...all really common sense stuff really.
I developed a taste for very calorific yogurts when my swallowing was really difficult.... hence no weight loss....I think feeling crappy makes it hard to keep as active as I was before being ill.
I go nuts every time my mouth ulcers clear and I can eat again....this time it was 4 cupcakes smothered in gooey icing, one after the other.
I do find the forum a bit difficult to navigate, but agree that its great to talk about topics other than symptoms and pain....although it's a godsend to be able to get almost instant answers.
Love Jill
Does hot weather affect your Behcet's?
Suffering in silence
Fatigue and Work
