New member to CP Australia, looking for support

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8 years 2 months ago #9580 by BIY
Hi Kim,

I agree with Don and Mary...I found the pain management program actually added to my quality of life. Without it, I would be still all day in my recliner. Now I break up my day little by little with painting mixed media pictures. The pain management psychologist helped me reconnect with my creativity. For that I am very grateful because, with having such limited ability to talk because of my jaw, art has helped me find a different way to express myself and counteract (at least a bit) the isolation.

All the best,
Fee

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8 years 2 months ago #9581 by Wendles
Hi Kim
I am agree with the others too as the best chance you can give yourself is to arm yourself with as many tools/skills that will enable you to deal with you PAIN, whether it is short term or long term it will help you deal with it along the journey to your alterment goal. Try everything to live a better life that is all we can do.

Wendles

There is always a SMILE
in your day,
you just need to find it!

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8 years 2 months ago #9585 by titan55
hi kim.i agree with all the others.i just wanted you to know that.have a good think about what everyone is suggesting.it is up to you what you would like to do to try and fix your life up a little bit.sending you some more cyber hugs.i am here for you.take care.

chronic migraines and headaches for over 25 years.
intercystitial cystitis.
chronic facial pain due to allergies
irratable bowel syndrome
chronic upper tummy pain
fibromyalgia
depression

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8 years 2 months ago #9591 by GarfieldRules
Replied by GarfieldRules on topic New member to CP Australia, looking for support
Hi Kim, Just catching up on your posts. First off you will not feel lonely any longer. Now that you are on this wonderful forum you will find you will have plenty of support and possibly friendship with certain members. I wish I had the answers for your situation. I dont but I can definitely offer support anytime you need it. Maybe another thought if you haven't already is go on different forums on the internet. Ones that interest you and you will possibly find you will end up making friends. Anyway I hope we will hear more from you. Take care. xx

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  • Kim_Cooper
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8 years 2 months ago #9598 by Kim_Cooper
Replied by Kim_Cooper on topic New member to CP Australia, looking for support
Thank you EVERYONE!!
I really appreciate all the feedback, I have taken onboard everything you have all said.
I'm currently waiting to see Mr Goodchild at Monash Pain Clinic, I was seeing someone else there (I won't mention his name) but he treated me horribly and made me cry everytime I saw him, he was negative, put me down, judged me constantly and made me feel so low that he completely turned me off pain management specialists!
I have thought about putting in a complaint, he was that nasty! But it's so draining, I'm already dealing with sooo much plus my Victims of Crime court case and I need to organize a lawyer and my rights regards my hardware breaking in my spine (I'm going to sue the company that produced the titanium that fused my spine- as it broke and I was unaware and was on bed rest for 2 years straight) they took 2 years off my life, so I need a lawyer!
Plus I have sooo much other stuff going on, it would shock you all..
So I can't be bothered complaining about Mr X..
Hopefully Mr Goodchild is better :)
I'm also hoping to get help financially through Victims of Crime and if I do then I will see Murray Tavener in Frankston (he is private, $360 for 15 mins!!!!) so I can't afford to see him.. Until then I'm stuck through the public health system.
I'm currently waiting for 4 procedures, a pain specialist, my surgeon, another specialist and a couple other things through public! It's soooo long, the waiting period! I wish I could afford private :(
Fingers crossed I get my Victims of Crime claim approved!

So I will see what this new pain specialist says, I will keep an open mind and not think of it as giving up!
I'm still at rehab, I'm only allowed to do hydro (gentle exercise).
I want to get massages weekly and try acupuncture and other holistic natural remedies..

They have mentioned nerve blocks, have any of you tried this? Is it successful?
They want to stop the pain nerve receptors, this sounds good but what about if I do damage to my back? I wouldn't know!
And what about cortisone and epidurals? I've heard bad things about those as when they wear off the pain hits you like a tonne of bricks?!! What are your experiences and what have you tried?
Can anyone recommend anything?
I wish I had a bath, I would love to just soak in a hot bath with salts and oils and relax! My house doesn't have a bath!! :(

Thanks again for all your feedback!!
It's great to hear from people who understand and can relate :)
None of my family understand.. And clearly my friends didn't, because I don't have any left!
I'm so alone, besides my Mum! She's the only one who has stood by me!
But you need a support 'system', one person isn't enough! One wall can't hold up a house, you need different walls for different parts of the house. It's the same in life, you need more than one person, each person feeds you in one way- they can't feed your every need! You need a support network, as each person supports a different part. It's impossible for one person to support every aspect.. Like a pie chart, there are many slices! Each person has different qualities in their pie and each friend and family member is different and can feed a different part of that pie.
No one has every single slice, it's impossible as we are all different! So how on earth can one person feed every part of your pie or hold up your whole house? One person can't be 4 walls! It's impossible!
Everybody needs a support system or network, but I don't!
I only have my Mum!! And she can only feed a certain part of me and support a certain part, I'm lucky that we are so close and she is my best friend so she feeds a few slices of my chart!
But I still have a lot of my pie missing.. And my house is falling down!!

Hahaha.. Sorry!! I'm rambling! Again!.. I tend to do that.. Sorry :)

Thanks again for all your support, thank you for your slices of pie :)

Xx

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8 years 2 months ago #9600 by Mary
Hi Kim,

Congratulations on taking control of your life! You have made some very positive decisions. When you see the pain specialist, ask him if there are any group programs that you can attend. You get understanding and acceptance in that situation too, just like here only face to face :)

We have all had experiences like you describe with some health professionals. The only thing you can do is simply see someone else who suits you better. however, we do have a policy on this forum not to "doctor bash" because of legal issues and because we don't want to damage our relationship with the medical profession. I know exactly how you feel, but there are some caring doctors out there who will respect you and believe what you say.

I hope that your victims of crime claim works out for you because, as you say, it will give you more choices in your plan.

Mary

Not every day is a good day, but there is good in every day.

"“It’s delightful when your imaginations come true, isn’t it?” ― L.M. Montgomery, Anne of Green Gables
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