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Private specialist wait times
Topic Started: Apr 10 2011, 11:42:54 PM (1,190 Views)
JuniperRose


I have had to re- register as I couldnt find the password for my username Juniper. :blushing:

Anyway, I have been feeling exhausted, tired, aching joints, mouth sores, dry eyes - seriously I think I have been going mad with these symptoms, thinking that its all in my head but I look crap at the moment and went to the GP for some bloods to be done, thinking it would be thyroid perhaps.

He called me in last week and told me that two of my results are abnormal - it was my ANA titre and another one and the GP has done an urgent referral to a immunologist. Now for a private urgent consultation, they cannot see me until July! So I have to put up with feeling ill until then.

I have had to stop going to the gym as I get so breathless - not asthma breathless but just out of breath and when I go on the treadmill, I actually get a punching type pain in my chest so the GP wants it checked out. He told me the two values that are significantly raised 'can' indicate something called Lupus, there is also one of my renal functions that are 'high end of normal' and a retest is recommended in 6 months.

I dont know what to do, I have the letter for this specialist for Charlies Hospital but the thought of waiting until July, I know they must be so busy and I am on the cancellation list.

He said it might not be Lupus but could be auto-immune disease of unknown cause but either way it is auto immune of some sort. I didnt want to post this on BE as people tend to be more understanding on here.

I have googled Lupus but it all seems so confusing, at the moment, its my breathing and this bloody chest pain that stops me going to the gym. Sometimes these blood tests are not always right, could it be an infection somewhere?

Oh another thing he said was that he checked me for arthritis but that particular part of the test was normal. This is so confusing, a year ago I wasnt like this now I need shed loads of rest and I want my life back - I like my life and I have lots of stuff on that I love and I dont understand how so many non specific symptoms can happen at once and affect me like this.

I am so sorry about all the questions, Mr PP is really worried as well and its one hell of a long wait till July and I figured someone would know on here - Tiredwithtwins perhaps :blushing:

Hope I get a cancellation appointment, actually in a bizarre kind of way when my doctor read out the results to me, I was relieved - I thought it was in my head and told him so and he said it isnt in my head.

Hope someone can help and there is one of Mr PPs famous chocolate fudge brownies in it for anyone that can. :kissed:
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Anne
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Wonderful Winsome Wench

You don't have to go to Charlie's. If you have the letter for a private referral then you can go to any specialist. Just try and do a little bit of background into others' experiences and recommendations.
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Tiredwithtwins
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Admin

I know someone who has this, and its a vast illness - a good website (altho its a uk one) to start with is www.uklupus.co.uk/
lupus is a vast collection of symptoms, and your doc is right in that it might not be lupus specifically as lupus is very difficult to definately diagnose, but he is doing the right thing by doing an urgent referall to an immunologist for a proper diagnosis.
In the mean time, id take it easy and try and eat as healthily as you can, cutting down on alcohol and smoking if not altogether.

hope you get some answers soon :flowers:
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Lynnj
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As anne said you can go to any specialist so long as you have the referral. Find one with an appointment available and get your GP to give you a referral made out to him/her. it's possible the one you have the referral for only works out of charlies once or twice a week, it's probably worth checking if they have any other practices they work from.

I had tests for lupus 7 years ago which were clear, but I have Rheumatoid Arthritis which is auto immune, preliminary tests show that I have an underactive thyroid which is likely caused by an auto immune disease (named after some Japanese bloke whose name I've forgotten). I have the aches, the stiffness, the swelling of the joints and mire recently the extreme tiredness and breathlessness, so I know where you're coming from and the feeling that it's in your head. Until recently I've just felt as though I'm lazy and wished I could give myself a kick up the butt to be like everyone else.

Did your doc do a thyroid test? Many don't, mine did due to family history but because the symptoms are so similar to many other illnesses that docs don't test for it.

Hope you have some luck in getting an appointment before July, but if not try not to worry about it too much and listen to your body.
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JuniperRose


Lynnj
Apr 11 2011, 11:33:46 AM
As anne said you can go to any specialist so long as you have the referral. Find one with an appointment available and get your GP to give you a referral made out to him/her. it's possible the one you have the referral for only works out of charlies once or twice a week, it's probably worth checking if they have any other practices they work from.

I had tests for lupus 7 years ago which were clear, but I have Rheumatoid Arthritis which is auto immune, preliminary tests show that I have an underactive thyroid which is likely caused by an auto immune disease (named after some Japanese bloke whose name I've forgotten). I have the aches, the stiffness, the swelling of the joints and mire recently the extreme tiredness and breathlessness, so I know where you're coming from and the feeling that it's in your head. Until recently I've just felt as though I'm lazy and wished I could give myself a kick up the butt to be like everyone else.

Did your doc do a thyroid test? Many don't, mine did due to family history but because the symptoms are so similar to many other illnesses that docs don't test for it.

Hope you have some luck in getting an appointment before July, but if not try not to worry about it too much and listen to your body.
Thanks everyone.

Yep he did the thyroid tests which were fine and my rheumatoid ones were OK as well. I might phone up Perth hospital and see what the waiting times are like for other specialists and get doctor to write another referral.

The Professor guy he has me down for works out of Freo and Charlies and apparantly he is full. Last night was bad painwise, I had to take painkillers and now more bloody sores are coming up in my mouth, I feel like my body is falling apart. :crazy:

I am hoping that perhaps the results are a one off and when they re-test me I will be fine :crossfingers:
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Lynnj
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Not good when you feel like that. What pain relief has he put you on? I find celebrex (sp) is good, its an anti inflamatory. Your GP should have a list of specialists, if you call up and say "look I have to wait till july to see this bloke, I'd really like to see someone before can you give me a few more names" then they should try and help you out, it's much easier than tyring to track them down yourself. The one I saw worked from rooms in wanneroo but she left after thet to go and work in Leeds!
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Anne
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Wonderful Winsome Wench

We swear by Celebrex in this household too :yes:
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ABCDiamond
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Just a quick suggestion, try the local Public Hospital aswell.
I know it sounds ridiculous, but we had a recent experience, where my wife had to see a specialist, and an appointment was made for her by the first Doctor. I then suggested she try for a full Medicare one, and it actually came out faster, and FREE :thumbsup:

Doub't it will happen every time, but it doesn't cost anything to try.
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JuniperRose


I called around today and the waits are all between 3-5 months so I have decided to keep things as they are.

The hardest thing is keeping it from my Dad, there is no point in him knowing, he flies back on Friday and will worry about me, he has asked why I am in bed so early, I blame it on the study :whistle:

And todays little offering from the mystery illness are nice mouth sores and a big one on my lip - Mr PP wont want to jump my bones in this state - not that I am in the mood :no:

Hopefully someone might cancel - then I can go at short notice.
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moneypen20
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Bond's Beaut Bombshell

Lynnj
Apr 11 2011, 11:33:46 AM
(named after some Japanese bloke whose name I've forgotten).
Hashimoto. Only know that from the Thyroid thread on BE.
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JuniperRose


Out of interest, my GP said this specialist I am going to see charges $350 of which I will get $200 back from Medicare. I am wondering if the tests can be done in a public hospital, I know they are going to do more blood tests and chest xrays, not sure what other bits they will do but GP said to prepare for lots more, I really hope they can bulk bill those on Medicare as we are not insured.

The secretary that I spoke to said we can claim our Medicare rebate straight away, so perhaps they might be able to send me public to get the tests done. No way am I about to refinance my house for this.

3 months is such a long wait when you are waiting for a diagnosis and you feel ill. :blushing:
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ABCDiamond
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Ask your doctor if they can refer you to either a public hospital, or a bulk billing facility for as many of the tests as they can.

I have found that they normally send people down the private track, unless people request public facilities.
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Ellie


If you contact your GP he should be able to contact a specialist and get you seen much quicker. I did this when the original was a wait and was seen and fix in three of weeks.
Edited by Ellie, Apr 13 2011, 02:36:34 PM.
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Lynnj
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Private health cover doesn't cover anything that is "outpatient" anyway. If you start to feel really bad again take yourself off to the ED and see what tests they do there for you, that will all be bulk billed and may get you referred to a public specialist. And before anyone says, I now this is the wrong use of the ED service.....
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JuniperRose


I called the clinic yesterday and they said all my blood tests will be bulk billed so I dont have to worry about it and I am also on the 'emergency cancellation list' and they are going to call me if/when there is a cancellation.

Apparently they are going to do more tests to see why my ANA titres are so high but GP said something about a 'speckled pattern' being consistent with Auto Immune Disease.

I have decided to try not to worry, I have heard sometimes these tests are not always accurate. Either way, I dont much care for my symptoms though, now my bloody glands are up and my mouth has ulcers inside it and one on the outside. :blushing:

I feel better when I get lots of sleep, I had a two hour nap today - not sure how I will fit in naps when I am back at work but I am going to re-evaluate my diet and get back into Yoga and see what happens.

Lupus Schmoopus!
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Hevs
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Miraculous Mamma Mod

I dont know how it works over there so cant offer advice

But just to give you my auto immune mystery story :lol: I have got an unspecified auto immune disease too. Its bloody frustrating because when I go to the GP I feel unwell, so we do the blood tests..... My ANA is always raised as is my IE something and also my liver test is abnormal. It always coincides with mouth ulsers (so bad that I need anti biotics) and really bad aches and pains, (that go away after 1/2 hour in the morning and a hot shower!) and recently, though not put it together at all, VERY dry sore eyes. HOWEVER!! once I've had a whopping course of anti b's and some cebrelex I feel fine again so we never get to the bottom of it really....

My Dr is erring on the lupus side, (but now he has sodding left the surgery I have to start again!!) but as its so hard to diagnose I'm just in the non specific auto immune stage ATM. I guess what I am saying is that the 3 month wait, although annoying, isnt really going to change anything. Even with diagnosis theres not to much they can do, except know you have lupus when diagnosing everything else!!
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JuniperRose


Hevs
Apr 14 2011, 10:35:36 PM
I dont know how it works over there so cant offer advice

But just to give you my auto immune mystery story :lol: I have got an unspecified auto immune disease too. Its bloody frustrating because when I go to the GP I feel unwell, so we do the blood tests..... My ANA is always raised as is my IE something and also my liver test is abnormal. It always coincides with mouth ulsers (so bad that I need anti biotics) and really bad aches and pains, (that go away after 1/2 hour in the morning and a hot shower!) and recently, though not put it together at all, VERY dry sore eyes. HOWEVER!! once I've had a whopping course of anti b's and some cebrelex I feel fine again so we never get to the bottom of it really....

My Dr is erring on the lupus side, (but now he has sodding left the surgery I have to start again!!) but as its so hard to diagnose I'm just in the non specific auto immune stage ATM. I guess what I am saying is that the 3 month wait, although annoying, isnt really going to change anything. Even with diagnosis theres not to much they can do, except know you have lupus when diagnosing everything else!!
Oh my god Hevs, those symptoms! I have the dry eyes, it hurts so bad and when I wake up in the morning I am a stiff old woman and we have replaced the pillows twice, bought a memory foam mattress and its still bad.

I look like Ive been snogging a diseased person with my mouth sores, I also get early morning weakness - like early hours and I feel so weak I cant get out of bed, like someone has taken the bones and substance out of me.

GP was on the ball and said the two values that were raised along with the symptoms are classic of Lupus, and referred me straight away to an immunologist so I was quite impressed with that. Can I ask, do you get sore hands/feet/ankles/knees? I do - sometimes its so bad in the mornings I have to warm them up.

A hot shower works for me but I wish I had a bath.

He said experts are suspecting stress can cause Lupus and possibly but only possibly, Abdels accident and the stress of it has attributed to it.

I dont have abnormal liver enzymes but mine seems to be affecting heart/lungs - I get a punching type of feeling in my heart - the worst chest pain ever and it hurts to take deep breaths on occasions and my eyes are pretty swollen as well in the morning.s

How do you cope with all this Hevs, I dont mean to be funny but I am comforted by your post, it shows you can live a next to normal life, you have Flynn to look after and you manage your life very well.

Already I look awful, there is only a very small window in the day where I look 'normal' and then I start to look tired.

Please let me know how you get on Hevs, good luck with your next appointment and I will just keep my fingers crossed for a cancellation for mine. :crossfingers:
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Hevs
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The next port of call was going to see a haematologist, done the immunisologist and turned out I was allergic to so many things, so that was good...NOT! I already knew that I was allergic to lots because I take telfast 180's every day and sometimes a clarytin too...but was surprised at how many foods came up, reducing those in my diet has helped immensly with the aches and pains. Some mornings I cant uncurl my hands they are so bad, and some mornings I cant straighten my knees, but at the moment I'm feeling well (apart from the unexplained deafness in my ear after my ear infection has gone!) All my psoriosis has gone and very little aches, apart fromn my knees atm, my dry eyes are driving me mad and making me look/ feel like a hundred year old turtle though :ooer:
With whatever I have, it definately comes and goes. When I get a bout I have to sleep in the day, but its not often, I just crash out lol. I've increased my daily doses of vitamins because if I get a cold, I'm wiped out and the symptoms start...I empathised with you so much when you said you felt like your body was falling apart...thats how I feel. Its often like its eating itself!!
I cope because I have to. I also have a super supportive/ helful husband who shares the load, this am he has taken Flynn to day care for example, so that I can come round slowly and get to work unflustered by 9! That helps greatly. He knows that I struggle and accepts it as a ball ache but one that we live with :nah: How I look at it, I could be much worse off.
Roll with the punches, listen to your body and the Drs and it will ease :)
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Hevs
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Quote:
 



He said experts are suspecting stress can cause Lupus and possibly but only possibly, Abdels accident and the stress of it has attributed to it.



Cant think that I've had much stress..... :lol: :wink:
Edited by Hevs, Apr 15 2011, 08:30:14 AM.
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Hevs
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Miraculous Mamma Mod

AND also :crazy: Theres something in the health suppliment section called LYSINE, its for cold sores and it repairs the lining of yur mouth, but if you keep taking them, its a bit like echinacea for colds...gives you a fighter against the sores :yes:
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JuniperRose


I seem to ache more in the hot weather and feel less healthy than I do when there is a chill in the air and I cant go out without sunnies on as the sunlight hurts my eyes.

Bloody hell, if I could give these symptoms to charity I would. :sick:
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Tiredwithtwins
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Hevs
Apr 15 2011, 08:29:42 AM
Quote:
 



He said experts are suspecting stress can cause Lupus and possibly but only possibly, Abdels accident and the stress of it has attributed to it.



Cant think that I've had much stress..... :lol: :wink:
stress :yes: .......

























... and getting older :bolt: :hide: :lol:

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ohippy
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Hevs
Apr 15 2011, 08:29:42 AM
Cant think that I've had much stress..... :lol: :wink:
:whistle: no, none at all !!!!!!!!
:crazy: :crazy: :crazy:
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JuniperRose


My Dad went back yesterday and all I have been doing is bloody crying, I feel heartbroken - its awful. I haven't told him I have been ill, it would worry him too much so I just made excuses for sleeping a lot.

And now the 3 month wait seems even longer and I miss my Dad, his bedroom still smells of his aftershave and I cant bring myself to clean the room or anything, I want it left as it is. Nothing and I mean nothing prepared me for how I would feel when he went back.

This is awful. :no:
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Hevs
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First time Matts Mum went back was a killer. It gets easier though. When will he be back?
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JuniperRose


Hevs
Apr 16 2011, 09:35:47 PM
First time Matts Mum went back was a killer. It gets easier though. When will he be back?
Dont know Hevs, he is an old 73, he is already talking of not renewing his passport in 2014 when it runs out, I keep asking myself why didnt I spend more time with him when he was here, I had to go in the spare room to study as I am at college as well.

We have never been a huggy family yet now I wish I had hugged his bones off when he was here, its hard when you have never done something, slip into old family habits and then when they leave, wish with all your heart you had.

The dog keeps going outside his room to wait for him as well. :blushing:

I am having a hot Milo filled with whiskey to make myself feel better.
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Ellie


Professional Princess
Apr 16 2011, 09:52:23 PM
Hevs
Apr 16 2011, 09:35:47 PM
First time Matts Mum went back was a killer. It gets easier though. When will he be back?
Dont know Hevs, he is an old 73, he is already talking of not renewing his passport in 2014 when it runs out, I keep asking myself why didnt I spend more time with him when he was here, I had to go in the spare room to study as I am at college as well.

We have never been a huggy family yet now I wish I had hugged his bones off when he was here, its hard when you have never done something, slip into old family habits and then when they leave, wish with all your heart you had.

The dog keeps going outside his room to wait for him as well. :blushing:

I am having a hot Milo filled with whiskey to make myself feel better.
Excuse me 73 is NOTold!! He could well visit you a number of times yet. My parents visited me when they were well into their eighties. Think positive.
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Petals


Have not visited the site for a while as well. I am sorry to hear of your health problem PP. Fortunately for our family we have always had doctors who could pull strings. My oh when he had the lung problem a couple of years ago was seen straight away by the lung specialist. The GP phoned him and arranged an appointment. I go to the same specialist but I am not urgent so wait the obligatory 2- 3 months. Try to get on the wait list at the public hospital and still retain the appointment made for you. Also try to get other appointments and keep them all you can always cancel the ones you do not need.

I had to have a sleep study done and there was months waiting list at the public hospital so I arranged private hospital, then the public rang me with an appointment the next week, a cancellation. Get on the cancellation list.

You do not need to continue to suffer and worry, remember the squeaky wheel gets the oil.

Hope you can sort it and get seen soon.

I take Mobic find its a great anti flam.

After thought, my brother was told he may have Lupus a while ago and it turned out not to be the case so hope that is what happens for you.

Also have you thought on depression. I suffer from it now and again together with anxiety, even though people always say "not you" you never look anxious. lol. I am though and my symptoms become physical rather than mental and the mind can do strange things when we are depressed and anxious. Symptoms can be and there are many others.

Depressed mood
Loss of interest or pleasure in activities you used to enjoy
Feelings of guilt, hopelessness and worthlessness
Suicidal thoughts or recurrent thoughts of death
Sleep disturbance (sleeping more or sleeping less)
Appetite and weight changes
Difficulty concentrating
Lack of energy and fatigue


Edited by Petals, Apr 17 2011, 08:39:16 AM.
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JuniperRose


Ellie
Apr 16 2011, 11:11:06 PM
Professional Princess
Apr 16 2011, 09:52:23 PM
Hevs
Apr 16 2011, 09:35:47 PM
First time Matts Mum went back was a killer. It gets easier though. When will he be back?
Dont know Hevs, he is an old 73, he is already talking of not renewing his passport in 2014 when it runs out, I keep asking myself why didnt I spend more time with him when he was here, I had to go in the spare room to study as I am at college as well.

We have never been a huggy family yet now I wish I had hugged his bones off when he was here, its hard when you have never done something, slip into old family habits and then when they leave, wish with all your heart you had.

The dog keeps going outside his room to wait for him as well. :blushing:

I am having a hot Milo filled with whiskey to make myself feel better.
Excuse me 73 is NOTold!! He could well visit you a number of times yet. My parents visited me when they were well into their eighties. Think positive.
Dad is an old 73 with a lot of health problems including heart :no:

I told him he could make another few trips out but he seems doubtful himself, although he doesnt look old, he acts old if you know what I mean, he shuffles along very small steps and cant keep up with even a normal pace of walking, he cant sit for long periods - 30 mins in the car was too much for him so we couldnt take him anywhere far. :blushing:

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JuniperRose


Petals
Apr 17 2011, 08:33:23 AM
Have not visited the site for a while as well. I am sorry to hear of your health problem PP. Fortunately for our family we have always had doctors who could pull strings. My oh when he had the lung problem a couple of years ago was seen straight away by the lung specialist. The GP phoned him and arranged an appointment. I go to the same specialist but I am not urgent so wait the obligatory 2- 3 months. Try to get on the wait list at the public hospital and still retain the appointment made for you. Also try to get other appointments and keep them all you can always cancel the ones you do not need.

I had to have a sleep study done and there was months waiting list at the public hospital so I arranged private hospital, then the public rang me with an appointment the next week, a cancellation. Get on the cancellation list.

You do not need to continue to suffer and worry, remember the squeaky wheel gets the oil.

Hope you can sort it and get seen soon.

I take Mobic find its a great anti flam.

After thought, my brother was told he may have Lupus a while ago and it turned out not to be the case so hope that is what happens for you.

Also have you thought on depression. I suffer from it now and again together with anxiety, even though people always say "not you" you never look anxious. lol. I am though and my symptoms become physical rather than mental and the mind can do strange things when we are depressed and anxious. Symptoms can be and there are many others.

Depressed mood
Loss of interest or pleasure in activities you used to enjoy
Feelings of guilt, hopelessness and worthlessness
Suicidal thoughts or recurrent thoughts of death
Sleep disturbance (sleeping more or sleeping less)
Appetite and weight changes
Difficulty concentrating
Lack of energy and fatigue


My therapist did this questionnaire for depression and decided I was a very low risk for it. I was diagnosed with PTSD though which is still a mental illness and has actually cost me two of my friends who have taken the 'pull yourself together' approach and as anyone with a mental illness will verify, that is not always possible.

Still, were they my real friends to start with? Probably not.

I did beg my GP for anti depressants and he wouldnt give them to me, each time I drove somewhere new I would vomit, panic - you name it and both he and the psyhc would tell me the anxiety relating to my driving would have to be worked through and talked through not medicated through. It didnt stop me trying though and I wonder if tablets would have worked better than therapy or even used with therapy.

I did find a driving fear program in the USA, an online course and it uses CBT techniques and I will say that has had a huge impact on my life and I even use the techniques in other areas of my life. I have even driven on the freeway twice :whistle: although I cried as I drove down the ramp but was so proud of myself.

Mentally I think I am getting there, nearly losing Mr PP had a big impact on me and rocked my little world but the accident has bought us closer, I just get a bit fed up that having a mental illness has annoyed/embarrassed my 'friends' to the point they no longer want to phone me. Still when they want a holiday to Oz they can sod off because I wont pretend I dont have it to make them feel better. And my motto is, accept me for who I am or get lost as I dont need them in my life.

With this auto immune disorder, its more common in women apparently up to the age of 45 and they suspect stress could be a link so we shall see what the next lot of tests will bring.

Today my bloody glands are up in my neck - what a bugger, its not too painful though and my mouth ulcers look a lot better. I did a bit of housework and feel knackered and sore so have taken something for that.

It is annoying because I work, I have my voluntary work at the cocky place and I am at college 2 days a week, just when my life is on track then i get sick. I do feel better when I have naps though and my GP has told me to listen to my body, which I did this morning and scoffed two of Abdels homemade profiteroles :crazy:

In fact, if I listen to my body again, I might go and eat another one - they are very nice. :lol:
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