Friday, November 29, 2013

Decisions...

After speaking to my psychologist yesterday, we have decided to start weaning of some of my meds, and see if we can lower them, which would not make me such a zombie. I am due to see the GP early next year, so am going to suggest we half the methadone, this will be done ever so slowly and then go from there. Ideally I would love to be of all of them, but I have no idea if that will ever happen.Time will tell.....

I got my nails done on Wednesday, am loving them, I painted them myself, as I have so many lovely colours, though I did love the Gel Polish, I also love to change my colours :). Next time I am going to get a couple of nails something special painted on them. 

Last Wednesday night on 3rd Degree that had a story on CRPS, it was mainly about children, and wanting to get a pain clinic set up for them. I felt that it should have been based more on Chronic Pain rather than just CRPS, but anyway I digress, because the media did not do their job properly, the programme has caused some distress for some people with CRPS. They mentioned that CRPS was a mind issue, well that could not be further from the truth, it is an issue with the brain. CRPS is:

"Complex regional pain syndrome (CRPS) is a chronic pain condition most often affecting one of the limbs (arms, legs, hands, or feet), usually after an injury or trauma to that limb.  CRPS is believed to be caused by damage to, or malfunction of, the peripheral and central nervous systems.  The central nervous system is composed of the brain and spinal cord, and the peripheral nervous system involves nerve signaling from the brain and spinal cord to the rest of the body.  CRPS is characterized by prolonged or excessive pain and mild or dramatic changes in skin color, temperature, and/or swelling in the affected area".

This is from the National Institute from Neurological Disorders and Stroke - click 'here' for further info, it is not just in the mind, as this story portrayed. Why has this become an issue, because friends and families of CRPS survivors have now had their families and friends saying to them, well it is in your head, just get over it, well different versions of this but basically they all mean the same thing. I have had people email me from my website (click 'here' to check it out) - in great distress. I have written to 3rd Degree and have asked them to acknowledge their mistake and that next time they need to do some research, and they would have seen it is not a mind issue at all. I am fuming at this, as it has affected so many people, just 1 simple word mistake can cause so much distress, this is where the media need to do proper research, it would not have been hard to find the correct information it is everywhere. The lady reporter did a good job, but the hosts halfway through talk about the mind. It should have also been mentioned the link between the spinal cord and brain etc. Like I said before if a little research had been done, the story would have been excellent. And the research would not have been hard to find, as just about every website talks about the link with the central nervous system and the brain. Anyway I am not sure how to embed the video so click 'here' to see the video, I am talking about, not sure if it can be watched out of New Zealand.

Anyway what else has been happening, well to start of this wonderful lady in Wellington is making CRPS awareness bracelets, they are really nice, and she will be selling them, so more info on that next week, when it is all up and running :). I have been studying, have my first assessment on Tuesday, an online test, good thing it is open book - it is timed so its not like you have plenty of time to look up the answers :)

Anyway I am sure I had more to say, but for now this is all I can remember, so have an awesome weekend all :)

8 comments:

  1. I didn't see the programme but what a disappointment for you when the people presenting it got their terminology wrong and gave out the wrong impression. I am so sick and tired of things that are hard to explain being turned around so that the sufferer is labelled as having a psychosomatic disorder and it's all their own fault for not "getting over it."

    I do hope you can follow through successfully and reduce your meds.

    CRPS appears to be some kind of neurological problem. If that is so would it help to read Dr. Perlmutter's book called Grain Brain? Also would finding ways to add coconut oil to your diet be helpful? There is so much to learn about the way our brain and nervous system works.

    Take care and hope you have a good weekend.

    Blessings

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    1. Thanks MargieAnne, will check out that book maybe lol

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  2. Wouldn't it be great if you could at least reduce your meds..good luck.

    Have a wonderful weekend.

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    1. Am really hoping so Jen, any amount lewes has to be good for me :)

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  3. I watched that program and didn't thought it was good - I didn't think they said it was a mind thing. I understood how they were training the brain to override the pain (that girl going up and down the stairs) but they did make it clear that it was a dreadful illness. I really can't imagine it and have absolute sympathy for you and your situation. It would be wonderful for you to try to cut back on medication but just do what you can.

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    1. For every med I come down on, the better it is for my body and hey you never know I might actually try low carb again, if I am on a lot less meds :)

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    2. Well don't blame me if you don't feel well on low carb! Just cutting sugar should change lots for you perhaps? I don't want to see you like you were before. It would be great if you could cut your meds but hey, one step at a time Jackie :)

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    3. Yip very very slow I will be taking things, and one small step at a time :)

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