CRPS & Rare Disease Day!

Saturday, February 28, is Rare Disease Day!!!

While CRPS is becoming more known around the medical world, it is a complex condition as it name suggests and it is still not well known at all by the general public, especially in Australia. This still leads to long durations of no diagnosis, missing the crucial first 6months to get help, as people get passed from doctor to doctor, usually being told "its all in your head" or "we dont know whats wrong, lets do more tests" and for some people its taken YEARS to get that diagnosis - I was lucky I got a diagnosis in 10months! The quicker people get a diagnosis, the quicker they can receive medical help! I never knew about CRPS until it was suggested by my orthopedic surgeon after months and months of frustrating hospital visits, tests and no answers as to why I was in so much severe nerve pain and the swelling, skin discolourations, temperate changes and the change in movement of my leg. So the more you share, the more people might be able to reach help earlier!!

So many people within Australia and around the world, suffer from a rare disease. It may be something they are born with or develop as a child or something they have from adulthood, either way, spreading awareness is the key to helping MORE people to get diagnosed quicker!!! Organisations like the website below promoting rare disease day in Australia is a great way of getting the message out! People get to share their stories and organisations like the Steve Waugh Foundation are getting involved and helping those in need! Take a look through the website and see what is being done to spread the awareness and help with Rare Diseases/Medical Conditions!

So on Saturday, February 28th, please think about sharing on the website to help reach out to more people who may be suffering from a rare disease or know someone who is!!! Awareness and support goes a long way!!!

http://www.rarediseasedayaustralia.com.au/

Cheers, Kate

November is Chronic Pain Awareness Month

So it's November, Chronic Pain & CRPS Awareness Month!!! 

I ask my friends, please help me to share the awareness of CRPS. Everyone happily shares on Cancer awareness posts, did the Ice Challenge for MND Awareness so lets get CRPS getting a share too - because it sure does need more awareness!!!

CRPS is Complex Regional Pain Syndrome, it also known as RSD - Reflex Sympathetic Dystrophy. It is a Neurological Central Nervous Disorder. CRPS is characterized by prolonged or excessive pain and mild or dramatic changes in skin color, temperature, and/or swelling in the affected area. It is a Chronic Pain condition that usually begins in a limb where the body has sustained an injury, sometimes it can just be a simple sprained wrist, or major injuries to a limb where bones are broken and nerves damaged. There are two types of CRPS: Type I (previously and often still known as RSD) & Type II - I have Type II. 
On the McGill Pain Scale it scores 42/50 highest ranking condition - and they arent wrong there! I have torn off casts off of my leg in frustration trying to stop the burning stabbing pain, it is relentless!!! If you want to know more, there is plenty of information easily googled :) I am sure most of you have seen the photos of my discoloured, swollen leg over the past 2.5yrs, I'm sure there will be more to come. Here are some informative links below!

http://www.bodyinmind.org/what-is-complex-regional-pain-syndrome-in-plain-english/
http://www.patient.co.uk/doctor/complex-regional-pain-syndrome-pro

The many colours, skin changes and swelling that affects my leg!

I try to not write a lot up online these, because I get too many people telling me I complain too much, I post too many "leg photos", I'm too negative and they dont want to know about it...I'm not sorry I write about it, its my journey through it and I like to share the awareness of this horrid disease! I dont think you would ever complain to someone with cancer that you dont like them sharing, so think twice before you say things...even to another person, because guess what, it makes its way back to me!!! If you dont like it, thats quite fine with me, but please dont complain about it, just move on and ignore it. One day it may be YOU or someone you love that is diagnosed with this, awareness so helps, an early diagnosis is so essential with this disease!!! I have had many message me asking questions, concerned about friends or family whom have similar symptoms, when they have no answers from the doctors over pain and such symptoms, it is good to know about. I didnt get an early diagnosis, because no one knew about it and Doctors in Aust are still learning about it, some still dont know (I have heard A LOT of different untrue versions of what it is lol) and because of that, I missed a crucial period where I could have been getting help and working towards a remission period!!! So many friends with CRPS have sadly all the same issue, so we are trying to spread awareness about it to help more people to get earlier diagnoses and onto quicker help!!!


Yes, CRPS is a Chronic Pain condition, that means everyday, I do live in pain. I am thankful for being in a country where I can get access to medications to help deal with this pain. Unfortunately the medications are very strong and often cause me to be quite out of it and bed is the safest place to be. I get flare ups with no warning, I can be having an okay day and next minute stuck in bed, in too much pain to move, my body too exhausted to do anything but rest...my bed and I are well acquainted friends :P Chronic Pain is much more different to "acute pain" - like the pain I suffered through when I originally broke my leg. Chronic Pain is relentless and it is extremely exhausting! No matter how much rest you get, you are always tired!



It also means, I dont live the normal life I want to, like someone my age should. I am SORRY when I have to cancel something last minute, when I cannot do something, when I cant do what I want to do, but when it might seem disappointing to someone that Ive pulled out last minute, I am at home in bed suffering, something I cannot control. I get very guilty of this, because I feel selfish for having to look after myself before others, whereas I have always put others before my own needs. I overdo things and I am SLOWLY learning, that overdoing it is actually putting me in a worse situation, so I have to start making even more bigger changes... (PLEASE READ NEXT BLOG FOR MORE ON THIS)

Yes, I try to be normal as much as I can, otherwise I would live in a sad, depressive state. I always try to smile and laugh and be "normal". Some hate that word normal, but trust me, I would do anything to feel normal again! Yes, I am guilty of always answering that I am "fine" another terrible word people don't like..but sometimes I just don't feel like going into things, so fine and good is as good as answer as I'm gunna give :P I am a quiet struggler, I prefer to do it behind doors, please dont be affended by this, but thats me personally. I have my "walls put up" to stop others having to get hurt by me when I am not in a good headspace over it. 

Some days are good, some days are bad, I am thankful for the better days! Days where I can get out of bed, catch up on things, get outside, take my camera out shooting and enjoy life. I am still in pain, please dont think it just "stops" on a good day, however, I am in a better headspace to deal with it and the medications actually help to take off the edge for a while. And if I go from a good day, to a bad day halfway through the day, trust me you will know!!! Biggest thing to notice - I go quiet (yep, very noticeable with me hahaha), I go pale and "grey" in colour, my leg jerks around a bit and I look extremely uncomfortable...bed and stronger meds are my friends. I cannot control these flare ups nor guess when they come on strongly, its very unpredictable.


Most of you know I dont sleep well, I didnt before my CRPS, but that was from an overactive brain...these days I dont have any issues with that, my brain is so exhausted it tries to sleep, however I am too uncomfortable to do so. I now have the crps progressing into my lower back (sciatica issues) and both my arms. My hands swell up and shoot pains up my arms into my shoulders. They also seize up and go dead numb like a deadweight and I cannot move them, they seize mid spasm...this is freaking scary :( I have quite a lot of areas with super hypersensitivity, a simple bump or brush past can make me scream in pain...its umm interesting finding which parts of the body want to behave or not behave each day lol! It is challenging me thats for sure, I am sure learning a lot about my body!!! Due to the spreading of the crps pain, finding a comfortable position to sleep is incredibly difficult! Nothing can touch my bad leg, it overhangs my bed or rest on the inside of the leg on a pillow (outter side of my leg is the worst spot). Due to the lower back sciatica problems, I have pillows to go under my hips and my blanket to make it comfier otherwise, then I have to find comfortable positions for my arms to go without sending my whole body in pins and needles and pain spasms...and I'm a tummy sleeper, have been since I was born...which means I'm lying on my delicate ribcage, which gets really sensitive and sore, so more pillows to help stop that pain...yep and once I find a comfortable spot, I try to meditate to calm down my body to sleep, if no success, I will read (books on my phone) to try and nod off...sometimes I am lucky, I sleep okay and get a few good hours...sadly though, I do not sleep deeply and even with 10hours sleep, I wake up exhausted. I often have nightmares from medications and "halluncination" dreams where I feel my pain while dreaming light sleeping, its freaking scary!!! The meds make it hard for me to wake up too, I am usually groggy for the first few hours "awake" after sleeping and takes me a few hours to be able to get out of bed. And yes you will find me on chat on FB at ungodly hours, usually I am talking to another chronic pain friend, thank god for good online communication!

To my CRPS, Chronic Pain & Chronic Illness friends, THANK YOU!!! Thank you for being there, offering supporting, listening to a long winded vent, for understanding and me helping me to some peace in all this. I am a greater person for all you in my life, thank you!! Online angels, whom I can guarantee I can find someone online at 3am when I am in tears with pain and frustration, yet being able to talk to you, means I fight on stronger for another day! 

To my friends and family,THANK YOU for all being there for me, putting up with me, adapting for me, praying for me and everything else you all do, I know I dont say it enough. I know a lot of you have known me for many years or my whole life, you dont understand how I can go from a healthy, sports crazed person to what I am today, and trust me, that makes me cry more than you understand. However, I battle each day to find peace and release the anger about this and the CRPS, I am moving forward towards finding more peace, but I still get extremely, extremely frustrated by it. It is hard to accept and deal with, however I would ask of just one request, could you please help in sharing the awareness about this disease! Over the month of November, I will be adding information or pictures like the ones in this blog, to my facebook page. On Monday, its November 3rd, its CRPS Day!! I will be wearing my CRPS shirt and orange ribbon, please help me in sharing awareness, by wearing orange, even just an orange ribbon will do! You can then share with others that the orange is for CRPS, a bad chronic nerve pain disease, you never know you might just help someone out!!! Thank you to you all!!

I am writing another blog currently, this one took me over 5 hours (bad brain fog day!!)...the next one is a personal post, please be sure to keep an eye out for it in the next two days xx Kate

The many battles of sleep!

Its 3.15am
This has been a really bad week for me.
I've been in a flare up all this week.
My legs are burning. My arms are burning and hypersensitive.
My back is aching and I cant seem to get comfortable :(
My muscle spasms/tremors/twitches are getting worse.
I have successfully thrown or dropped phone more than half a dozen times today from these spasms.
I'm waiting a trial procedure next week...and I'm only on gabapentin...
I've had some people be very rude and selfish towards me.
I've had some wonderful friends reach out to me...
I've had to find more things to keep me distracted - thankfully I have plenty of photography videos to watch!
I've have gotten to know more amazing people in the crps support group on Facebook im a part of.
I've smiled and laughed :)
And I've cried in pain, frustration and sadness just as much :(

But...I continue to keep my head high enough to feel the wind! I am a CRPS Warrior...

It's time to write my story...

After a few things happening...and on the eve of my 18 month anniversary - its time to write my story, my journey...

Please stay tuned...it kindly wont be short :P

Frustration

I am so very FRUSTRATED

I'm not sure you heard that or not...but yes

I AM FRUSTRATED

VERY, VERY, VERY FRUSTRATED

Chronic pain is NO JOKE!!!

But our Public Health System here in Qld sure is!!

Dear Qld Government & Health - prepare for a battle!

Signed: The Chronic Pain sufferers of your so called "great state" 

Sleep

Its 3am...

My left leg is burning from toe through to the hip & lower back

My right lower leg is burning
My back is spasming
My right shoulder is aching
My right wrist is aching, starting to burn...
My back spasms are causing me to constantly move positions, trying to keep the pain to a minimal.
I've currently taken enough meds to keep a whole footy team painfree and sleeping...but it just doesn't work...
Tonight is not a good night...

My body gets to the point of exhaustion and it just sleeps...
And sleeps...
While waking to severe pain, it eventually just gives in and sleeps...sometimes for half a day, sometimes for just an hour.

But even with sleep, the pain still exhausts me.

Today I went out for my brothers birthday lunch, fairly low key and minimal activity, but a couple of hours in...
I felt my leg start to swell up, start to burn, a deep, low, extremely painful burn...and I felt my body just go whooooosh...
I managed to get home, to cool my burning legs down in cold water, before falling into bed, simply exhausted.

Dealing with pain is like running a marathon some days: it is so exhausting, that lying in bed is wears you out!
The pain does not let up: it takes over your body and you give in
And when you do sleep, your body is working overtime to heal itself, that you never properly sleep, so you wake up exhausted.

Chronic Pain is so hard to explain sometimes but the one word that comes to mind is, that it is so EXHAUSTING!!!
To have pain spreading without your body, that does not stop, its hard work.

While I suffer from CRPS, there are so many other Chronic Pain and Chronic Illnesses that this exhaustion overload affects so many people. Please dont be judgemental that we need to sleep, sometimes a lot or at different hours, because sometimes it is all just a little bit too much. It's just not the same as a "normal life"

Its now 3.30am

I'm still awake, the burning pain is still burning.
I am still chatting to a few friends, new found friends around the world whom battle CRPS like I do - its a good distraction....

Hopefully sleep will come soon, I've tried two lots of meditation and failed so far, so fingers crossed on the third attempt!

Until next time, Kate

A little bit more about pain

Tonight, I was alerted to by friends to watch a Documentary on SBS called "The Secret World of Pain" - while turning over at last minuet to discover the documentary - it was definitely worth it!! While it doesn't touch on chronic pain until halfway through, it was absolutely intriguing to watch and learn from. Learning about the genetics behind pain, behind the brain works, the fascination of the unknown when it comes to chronic pain and what causes it, as well as how the body reacts to it and process it...if you're interested in taking a look, please take a look into a little bit of the painful side of our world! But very interesting to see whether or not that new trial treatment provides a long term relief for pain sufferers...will be following with keen interest!

http://www.sbs.com.au/ondemand/video/48322627784/The-Secret-World-Of-Pain?fb_action_ids=10151958919973487&fb_action_types=og.likes&fb_source=aggregation&fb_aggregation_id=288381481237582

I've had a bad flare up today, keeping me between bed and the lounge, exhuasted and in a lot of pain. Days of pain scores not going below an 8 are tough, especially when your legs are burning hot, with no way to cool them down. I've been doing a lot of more of my physio GMI tests to help with my brain retraining and it seems to be causing more pain and more extreme changes in the temperatures of my leg especially and causing temperature changes in my right leg too :( One minute its burning hot, then next so stone cold its purple! But at 1.30am, its a long way to go to sleep when you're in so much pain and your legs burning :( This is extremely frustrating while trying to stick to such a strict regime (5-10mins of tests every hour) and getting so many negative side effects from it. But I have improved on my reaction times and my accuracy, so that's one plus!!

I find music relaxing and calming, especially country music and acoustic music, so here's a favourite I've found - she is very talented!!

http://www.youtube.com/watch?v=1KpViznr7z8&list=PLC75F8A5B31219C86

I've not written much in the last month. I've had a lot of different medical appointments, to the point of 3-4 a week, and I've had a close hospitalization again. I still need to sit down and write my story one day, until then I plan to start spreading the word of this blog to try and reach more :)

I've also started planning an awareness photo idea for CRPS to spread awareness of this disease and to help others! I have a gift with photography, so I need to do something with it! Still in planning, but I'm getting there!

Until the next post,

Kate