i’ve been reading up on the report for the last few days, trying to figure out what the most important points to get across were… and trying to figure out the best ways to say them and how much to share of my own story… to be honest, i barely remember what i said, and can not remember the last time i talked that fast but i know i hit all the points i needed to. i didnt know until i got there and had a short pre-meeting with Alexandra Speedy from Porter Novelli who was Pfizers representative there how long the interview was going to be, and that it would be only me up there! for some reason i thought Pfizer would have a rep there too to manage the statistics part. (my brain does not remember statistics well!)  turns out they did, and it was me!

the makeup ladies were great & loved playing with my mohawk, which was hillarious then i must admit i got a bit nervous. I’m so glad it went so well, i’m sad it was as short as it was and i’m greatful to Petra & Corin for making the experience so comfortable. Its nice to know the 3 years of drama school went to good use! hehehe…

The interview is available on demand now, and will be permanently available here for anyone who wants to see it. i’ll be trying to revamp the website over the next few weeks so i’ll set up a media page for that and the print interviews we got in 2010 and see if i can embed it in the page. i’m not great with the computerstuff.

i’ve been finding new organisations too, new links, new pages its fantastic what you find when we all get together!

for those with CRPS, heres a fantastic site written by a girl with the condition (also known as RSDS). its called Rock out to Knock out RSDS which i freaking love. its an awesome idea and theres a bunch of information on the condition too. some of the links are still under construction, but the message board is up & running so go say hi!. its an American site so some things will be different than they are here, but its still a great opportunity to talk to others with your condition

one of the new members on our forum mentioned that she’d gone to an american clinic after not finding the help she needed here and gotten a  Medtronic Neurostimulator which helped her take her life back. i’ll admit i havent heard of them before, despite them being around for 30 years (?!?!?) I went to some clinics while i was in america in 2006, and recieved IV treatments which were fantastic and a bunch of expensive pills and potions which pretty much all tasted foul. i couldnt afford more than a months worth, but to me something implanted which reduces the pain signals to ‘a gentle tingling’ sounds a damn sight more useful! Maybe its just me the transmitter is implanted in the abdomen or buttocks, and works on the pain impulses before they even reach the brain. from the website, they can test you to find which of the multiple stimulators they have will work best for your condition, and your level of mobility. to anyone with the money, its worth checking out! for the rest of us… hopefully they’ll make it to NZ someday. At least the technology is out there, even if its not here yet.

For those of you in the south island, i’ve been introduced to a place called Burwood Hospital which has a pain clinic. by reputation its very good, and one of our girls is signed up to go through the course there so i’ll let you know how she goes. in the meantime, they have a library which you can borrow books from through your library through something called Interloan. from what i understand, you sign up, give them your address and they send the books right to you! I’ll admit i’m itching to know what fibro books they have in their collection. hit them up & see what they have that will work for you.

the Chronic Pain and Fatigue Trust, who are a new organisation in Auckland are having their launch tonight in Epsom. they’re set up to deal with Chronic Fatigue Syndrome and Fibromyalgia, and i believe they’re planning something for Fibro awareness day on May the 12th so look out for it. check out their fb page and say hi, they’re the only organisation i’ve found offering real, practical help – as in, they’re starting a program which involves someone coming around and helping you cook, clean and do chores when you cant. its a brilliant idea – one i’ve also had but havent had the cash or manpower to implement yet – and i’m so thrilled theyre doing it its not funny. this is what we need. not more drugs or pity or odd looks, but actual practical help in getting our lives and health back. so thank you, Emma and i hope you guys go far

thats all for now.. i’ve been on fb or answering emails since the interview tomorrow and its showing. i need to stretch & get some down time so my muscles will unclench… plus i have some chainmaille to make. for those who came out in support yesterday, thank you so much i cant tell you how much it means to me. theres a lot more of us than people know, and we want to work, and function, and do sports and all the other things we’ve been denied. today, and yesterday, i so strongly believe we will get there that it brings tears to my eyes. heres to more interviews, and publicity and chances to tell our own stories our way.

And keep those pens & pencils moving! you’ve got a long time this year to create amazingly awesome art, so i want something spectacular for the art competition this year!
no pressure
love you guys
Nix

The interview i did for breakfast news on TV1 is also live now, you can find it here. the response seems to be pretty good so i’m happy, despite not being able to remember a word of what i said, go figure. adrenaline is fun like that! the pre-work i did paid off though, and i got most of the major points i wanted to across. forgot to say the report was from Pfizer though… dont think i got a chance but i should have stuck it in there somewhere!

The crew were awesome, the MUA loved getting to play with my mohawk & Petra Baghurst & Corin Dann were lovely. short bit, but every little bit helps! i’m going to hopefully get a copy of the interview from tvnz to upload for you guys to watch, otherwise it’ll be available at the above link for the next 6 days.

I’d love to hear what you guys think of the report

xo
Nix

the report will be released the same day on the Pfizer and Arthritis NZ websites. PLEASE go have a look and download your copy of the report. Its very well done, and its free! Recommend it to your GP and other doctors as well, as its perfect for waiting rooms etc. we need to get as wide a circulation of this report as we can, its a big step for us.

Now i just need to figure out what the heck i’m going to wear, and write myself notes so i actually make sense… i felt confident about it this morning, but as the day has gone on and my energy has been used up i’m making less and less sense…. i guess we’ll see what happens. i will definately be taking my brain (notebook) along to remember the important things. fingers crossed!
i’d love to hear your comments on what you think of the report after its released
love ya!

Nix

sorry again for my prolonged silence, i’ve finally had my peripheral nerve tests but getting there was a mission and a half! I’m still getting fairly intimidating muslce spasms which are fascinating all my docs and am lined up to get a cranial MRI (sometime soon hopefully) which will tell us whats happening. fingers crossed.

Anyway, onto the interesting stuff! talking about MRIs and things, they’ve finally started scanning pain patients, and i’ve come across this link about Chronic Fatigue Syndrome and this link regarding Fibromyalgia in the last month or so. in case you cant click through to the links, they’ve found in the first study that the ‘reward center’ (basal ganglia to those who know brain construction) of the brains of patients with CFS has decreased activation, and lowered bloody supply. the basal ganglia is often involved in conditions which present with fatigue, and is also used in motivation and motor function. sound familiar anyone?
The fibromyalgia article blew me away. (sorry guys, its a bit close to my heart) They have found that SPECT scans of the brains of those with fibromyalgia have reduced blood supply to the areas of the brain involved with pain processing and emotional responses to pain. they’re not working because they’re not getting fed. the study goes into much more detail and is written a lot better than i could re-write it, but thats the gist of it.

They’re both major breakthroughs, but they’re only the beginning of the process of finding out what causes pain conditions, what the actual effects are (instead of just the symptoms) and figuring out how to effectively diagnose & treat them. still, its a start, and a bloody good one! just dont go running to your docs for the tests yet, the fibro test was run in Marseilles in France, and when i ran the article past my father (a doctor & my medical advisor) he said he didnt think they had SPECT scans strong enough for the test in the southern hemisphere. we’ll get there

Speaking of breakthroughs. the Pfizer team have been back in touch, and the study of Chronic Pain they’ve conducted goes live on Wednesday 9th May! i cant discuss any of it with you yet, but i’m being interviewed on tvnz Breakfast on wednesday morning so tune in & check me out. its a solid report & considering its the first of any kind done on chronic pain in New Zealand its a breakthrough all right. we can use this to build awareness & build on this from here. It’ll be available on the Arthritis NZ website & on Pfizer NZ website from this wednesday so watch out for it, suggest it to your doctor & give it to your friends.

thats all for now, but thats more than we’ve had for a while
i’m getting some work in on the Painmonth comp so keep those pencils moving!
love ya
Nix

Resurrection Customs are sponsoring our new fliers, pictured below. please feel free to send this flier to anyone you want, we need to get knowledge about this competition out while theres time for people to create their artworks.

more writing below so please keep scrolling!

Apologies for the lapse in communications. i’ve now been trying to find answers about new symptoms for a full year since they started, i’m finally being scheduled for nerve conduction tests and really hoping they will provide some answers!

I’m trying to get others on board to help out with organising the competition this year, as theres no way i’ll be able to do it all myself without severely affecting my health. if you’re interested please email nix@painmonth.co.nz & we’ll chat

i’ve been approached by Pfizer NZ about a Chronic Pain Health Report they’re launching in May with Arthritis NZ about the experiences of Chronic Pain Patients. Cant wait to hear what they have planned & i’ll keep you guys updated as i go.

if you havent seen this link, you need to. They have found a scan which shows that the parts of the brain that deal with pain get significantly less bloodflow in patients with fibromyalgia.This is the very first physical sign they’ve managed to find which confirms the presence of fibro – and a final nail in the coffin to those who still believe that the condition is psychosomatic.

Wow. i just had to go lie down for 15min! i finally have a desk and am organising the piles of notes and paper and kept articles i’ve had lying around forever, and filing it away so i’ll share the choicest parts with you as i get to them. simply having my workspace be away from my bed again is magical, i feel so much more mobile and productive already. my back is complaining about sitting up straight again though! go go gadget muscles… they’ll get there

much love to all of you. Again, i cant wait to see what you come up with! the theme this year is ‘The Soul Within’ which seems to be more accesible to some of you than others.. i’ve already had conversations with some who think they’ve lost the ‘them’ inside the illness and wonder if they’ll ever find it again, who feel that the condition they have has chipped away at their sense of self without it, and their sense of self worth… let me tell you now, from someone who has been there and is still there.

You are still you. you may have more to deal with and more to think about than most, but that doesnt make you stop being you. you’re tired and angry and frustrated and confused and a hundred other things a day, but the person who feels all those things is still You. You are strong, and amazing, and so much better than you think you are. The fact that most of those who know you probably dont even know you have a condition is testament to your strength. the fact that you are still striving to work, and socialise and love and do ANYTHING is amazing, and the person who drives you to do those things, and deal with what you have to to get through the day is YOU. if your ‘soul within’ was not still there, and active and actively fighting, you would not be the person you are.

Dont give up on yourself, and dont underestimate yourself.

till next time – keep working!

love you all
Nix

x

Nix

THE SOUL WITHIN – an illustration of the ‘you’ behind what people see of you; the ‘you’ that you would be if you had the chance; or the person you see in your friend/partner/loved one without their illness/condition defining them. What keeps you fighting, the part that keeps you striving to move forward despite whats pulling you back – no matter how small or weak you might think that part to be, trust me, its there. (personal note – i love this theme because it will {hopefully} make you think about that part of you and the strength required in you just to get up in the morning, and start to appreciate yourself for that and reflect the beauty & strength of it in your artworks)

STRENGTH/STRUCTURE/SUPPORT – more abstract, but this one has an awesome range of possible interpretations. the strength behind you & in your support network, the structure of your body and where it is strong or damaged, the structures that enable you to function despite your body, the structure you’ve built up around you of your doctors, therapists, friends and family who support you, your body that supports you, the structures that support you & your support network – or any of those seen from an outside perspective. (personal note – i love this theme because of the thousand ways it could and will be interpreted and the multiple ways it will resonate with people. it’ll make for some fun & really different artworks!)

anyway! good news is, thanks to Leesha Ragdoll the second donation has gone out to the Child Cancer Foundation today! along with a note explaining where and who it came from, so thank you Leesha
i’ll get there, slowly

well…. its been a while. I havent been very well, unfortunately, the Auction and competition took a bit too much out of me

wow! proven by the fact that i paused in this to curl up with my manthing for a bit and then.. couldnt move. I’m getting massive muscle spasms at the moment, and they’re everywhere, all at once. Its…. inconvenient, among other things, but i’ve got a training routine in place to get muscletone back and am trialling a bunch of massage therapists in the hope of finding someone who can give me the pressure and intensity i need to function.

Anyway! The first donation has finally gone out, to K.W.A.N.Z (Kids with arthritis NZ) thanks to Rachel Donnelly. I’m organising the rest, most payments have come through though there are still pieces waiting to be picked up (hint, hint ;P) and i’ll work through them and pass on updates as i go. in total, we raised $960 towards various charities, and the auction was a huge success – at least according to the people who were there. Bex (aka Rose Noire) stepped in at the last minute to help organise it and i couldnt have done it without her. i will attempt to write up a full list of all the performers, helpers and generally wonderfully supportive people that have helped this year, but i know i would forget at least some and i couldnt forgive myself so i’ll leave it as – you know who you are, and thank you

I’ve been on hiatus… sort of enforced by my body, unplanned, and not entirely restful, as there have been other factors (real life) adding to the body crap that comes as part of the deal…. but its been good all the same. we’re reorganizing the house to give me more space to stretch, doing a clean out and generally setting things  up so i can work from bed if i have to (which i’ve had to) but i can rotate the setup and work from my swiss ball or out of bed if i can.

I’ve been contemplating recording my.. fight back to functionality on this website.. but i’m not sure where and our web designer seems to have disappeared (or changed his email) so i cant set up a separate blog page. i’ve brought myself from unable to walk (which i’m not quite at, yet. some days, but not others) to functioning four times since i got fibromyalgia – mostly due to stubborness and not knowing when to stop – and i know some of the techniques and practises i use are a bit unorthodox, taken from various martial arts, feldenkreiss and alexander technique classes, dance lessons and random shit that i made up as i went along – but i feel like they might help. Might be useful to someone.

of course, it would involve sorting out videos of me stretching, and – well, general organising, which i’m not very good at at the moment, so we’ll see. let me know if its something you would be interested in, an inside viewpoint if you will, and i’ll consider it

much love to all of you, and i hope you’re AWAP… i wish i could give you more, and i hope with the help of others who have offered, year three of pain Awareness Month will be bigger, better and more beautiful

oh! we’re also discussing potential themes for next year, so please chime in if you have ideas
Mwah xo

Nix