Lived Experience Forum

[HappyCastle]

@BlueBay I can relate to the frustration it sounds like you're feeling. I hope you are able to find a way to unwind this afternoon - even if that does involve a big cry!

Wishing you all the best

[Owlunar]

Hi @BlueBay 

Hold on tight - the end is not yet - you know you always feel desperate when your stress levels are high

I am really surprised - in fact I have been for some time - that you are not on the Disability Support Pension. Perhaps you were capable of part time work for some time after your Dx but now you have all these digestive problems and you have been in hospital so often lately and had so many tests - your gastroenterologist calls it hypersensitity of your gastric- enteric system - this is a real condition and it is really painful with vague symptoms and stress makes it worse. I get it - I hear you. You do need your specialist to sign off on you for Centrelink but you have to tell him.

I did look this up. And although I had a similar problem when I was young - it was operable btw - and my mother dragged me around to every possible specialist and I had numerous tests - things were not as advanced as they are now but I do remember how I felt - hopeless, helpless and scared - finally it was decided that I needed an operation and it worked - I don't think you need surgery though - but you need to watch your diet and attend to the financial situation as you need to and sure - it's horrible having to do that but necessary and you will feel better when you have.

The weather has been brutal too - I have felt better myself than I have over the last few days - or the weekend at least - this won't make you feel brilliant - and Centrelink has to make things hard to weed out the people who take advantage of the system - you could perhaps see them and let them know how hard things have been for you

I wish you the best - it is rotten to feel so rotten - I know - try and control as much as is sensible and try and keep the stress levels down - I know it's hard for you but necessary

And yes - I do know the hospital you were in - I was admitted both times I went there as my specialist sees his patients there - 

Dec

[BlueBay]

Thanks @Owlunar  you always know what to say snd you get it. 
I phoned the utility's this afternoon. Water company says wait til may snd then they will pay both outstanding amounts. Gas and electricity company said we are in credit as we direct debit both so that's a good thing. 
We are in the process of changing our mobile company. 
I'm trying hard but I'm desperate. I told hubby today thst my psych suggested hospital for a week or two - he was ok with that. I think I'll let my psych know tomorrow to put me on waiting list.  I think right now I need a break. 

I've decided today to chsnge doctors. I was a bit annoyed thst my current GP was very blasé about my pains and keeps referring to it as my mentsl health. It's not in my head. The pain is real. It bloody hurts. 
After seeing new doctor yesterday  I decided it's time to change. He was very thorough yesterday. And he bulk bills which is a bonus. 

So for now I'll see this new GP for a medical certificate for centrelink. If he won't then I'll ask my psych. 

so much stress is not good for my pains or my mental health. 

[Owlunar]

That's good work and well done @BlueBay 

I don't know why you shouldn't be on Disablity right now - you have physical and mental health issues and one is make the worse which ever way I look at it - 

Perhaps it is a good time for you to have a break in hospital - you think you are not strong but you bloody well are - how many people would keep going the way you do with so many issues? You are doing well in spite of how you feel

And yes - time to change GPs - I am sure - your old GP kept saying you would be okay and obviously not okay - we need to trust people and you seem to have lost that trust

Dec

[Shaz51]

hugs my sister @BlueBay 

[BlueBay]

@Shaz51 @Owlunar @Judi9877 @Eve7 @NatureLover @BPDSurvivor @MDT  and others following 

What a day!!

I saw my new GP at 12 noon to ask snout medical certificate for centrelink.  Didn't have a good night in pain mist if the night. When I got to doctors my left side (spleen) was quite sore snd he could tell I was struggling. He said it could be from the diverticulitis. Instead of waiting 2 weeks for X-ray he said to go straight away and get it done. He agreed to the medical certificate. He said I need to get better before going to wirk. I totally agree znd was hsppy with what he said. Whereas I know the other GP wouldn't give it to me. 
X-ray done resukts should get to him by this afternoon. Snd my gastroenterologist will get copy before I see him at 8am tomorrow. 
we talked a bit about my mentsl health and possible hospital stay. He said he feels that it's not good to go if nothing changes at hime. He's right. He said if I'm really bad thdn yes go but just for a break he feels it's wirse. Deep down I know he's right. He encourages me to do something that will lift me up. He also mentioned about me seeing both doctors to which I told him thst I'm going to get my file transferred to him. 
He's a very good dictir. In fact sll his patients from 3 suburbs up have followed him. People around here know of him. 

Hubby has taken next week off so the boys have given us some money so we can go away for 3 days. We're booked to go to the Grampians. Never been snd am excited. 

I think this break from wirk (if approved by centrelink) will be good. The doctor has given me 2 months off. I hope it gets approved. I csnt see why not. 
better go and lay down a bit. 
Chst lster my friends  xxxxx

[NatureLover]

Really hope you can get that break from work, @BlueBay ...and your pain levels decrease...

[BlueBay]

Hi everyone @NatureLover @Shaz51 @Owlunar @Judi9877 @Emelia8 @Eve7 @MDT and others reading - 

Just an update today:

I had an appt this mornign with my gastroenterologist at 8am.  He explained that the xray i had yesterday showed my colon is still a bit blocked and gas in my intestines.

I am now to take another medication at night and he has requested I have a special scan for the gallbladder.  So basically I have to eat a fatty breakfast between 5.30am-6.00am then have scan at 10am.  This scan will show  if my gallbladder is working properly.  it will also show any tiny stones that the ultrasound couldn't see.  this is booked in for next thursday.

He also said that my new GP is a fantastic doctor, that was really good to hear.

I then took my medical certificate to centrelink and have uploaded it with their help.  This will now be assessed by them and they'll let me know.  Fingers crossed i don't have to look for work and gives me a reprieve for a few months.

I am so lucky and happy to have found this new GP.

[Eve7]

Really happy for you to have found this new GP @BlueBay  and hoping that these more specific tests give you some answers and it’s all treatable.

Thinking of you

💙💙💙

[Owlunar]

Hi @BlueBay 

I am glad you have found this new GP - he seems to be very kind and gentle - and caring

We do need to change doctors sometimes - and I hope that Centrelink gives you time out from work - at least this doctor is supporting that. You gastroenterologist seems to be on the ball too - and you are going away for a few days as well and that will make a difference

All you can do is to keep on keeping on about all of this - and I know this is hard yards - and moreso when the medical profession can't seem to find the actual cause of pain that is very real

All the best 

Dec