ADELAIDE CRPS EVENT: My Speech.

If you read my last post, you will know that I, along side 3 other CRPS sufferers, gave a talk on our experiences living with the condition, during Adelaide’s first Colour The World Orange event on Nov 6, 2017. It was a great event ad by doing this we were able to give the Drs, Researchers and students some insight into living with CPRS.

I decided to participate partly because I felt I needed a challenge because part of having this condition is that it has chipped away at my self-esteem and I felt I needed to push myself somehow to gain some back. I agreed without allowing myself to think about the fact that I would be standing in front of people who knew a lot more about the condition than I do. Add to that my speech became a big issue in the week leading up to the event. Damn you CRPS!!!!!!!

In the end I was so glad I was there and gave my speech. I started out so nervous that I stumbled through the first paragraph and then after that I was fine. After I felt I could do anything, but really what I wanted to do was do it over so I could do a better job of it. lol.

So here is my speech..

Hello, My name is Sarah and I have suffered from CRPS for around 5 years. My CRPS was triggered by a burn incident that left me with second degree burns to my left arm, hand, shoulder and the left side of my face. I was at my parent’s place where my Dad had a fire burning for doing a pre-summer clean up. I didn’t realise that a can of spray paint had accidentally been put into a box of documents that I had the bright idea of throwing onto a fire to get rid of. Unfortunately the care I received at our local Hospital was far from adequate and It was four days before I was sent to the burn unit at the old RAH and by then infection had set in and I was in a bad way.

Despite signs that something was wrong,  it was 4 months before my first pain flare, Suddenly my left hand and arm were swollen, stiffening and loosing movement. I had electric like pain shooting up my arm and down my fingers, as well as a crushing pain in my joints and bones. It was during this time that I started researching online and discovered CRPS as a rare complication of burns. I was diagnosed with CRPS the day before my 30th B’day after I took my findings to my GP.

After my diagnosis the condition took off quickly and within 5 months it had spread into both my legs, and soon after to most of my body from the neck down. My list of other symptoms is pretty long ranging and changes from day to day. These include insomnia, fatigue, forgetfulness, and speech, vision, hearing and motor issues.

Finding other sufferers online and in person locally here in South Australia has also helped me with support and advice that has been invaluable. Alone this is a very isolating condition. Through joining Facebook groups for CRPS, I was able to meet other sufferers in person here in Adelaide and we now have our own group with over 50 statewide sufferers. That’s CRPS South Australia if anyone is interested.

Another turning point was coming under the care of the Royal Adelaide’s Pain Unit. At that point, I was losing strength in my legs, my flares left me bed ridden and I was a general mess. At the pain unit, I soon started having Ketamine infusions for 3 days every 3 months and although the first time the relief was delayed and short lasting, it did quieten down my other symptoms. A friend with CRPS had advised me that it might be this way and to not feel disheartened if change wasn’t immediate. By my third round was having lasting effects and slowly with each infusion I have gotten more control over my condition. Aside from Ketamine, I treat my condition with Lyrica and Tramadol on a daily basis.  

I have also found that gentle daily exercise helps keep my pain and symptoms in check. I walk, use a stationary bike and do a mix of small weights, yoga and Pilates. This year I also started riding a bike, something I previously couldn’t do.

I am also a big fan of adding Magnesium to my bath about once a week. I find it relaxes my muscles and helps calms my pain to a level I can deal with, especially when I have over exerted myself.

There are things that I have found hard about having this condition. Initially it was hard explaining my situation and seeing the look of doubt or confusion in people I care about, Sadly I also found myself with only a few friends left.

Now after 5 years of CRPS, for me the fatigue that comes with my CRPS is the most debilitating part. I am now working a few hours a week, and to do that I need to plan my week around the rest I need before and after each work day.

Health wise, I have been diagnosed with type 2 Diabetes, an underactive thyroid and high cholesterol since my crps diagnosis.

Mentally the condition has been a struggle with periods of anxiety and depression, I have mourned over the life I have lost and struggled with losing my independence. For a long time I wondered if there was point to life with this horrible condition, especially if it stopped me from living a meaningful life. But in a lot of ways I have also been very lucky.  

Despite the negatives of having this condition, there are positives. Including the fact that I have responded so well to the treatments I have tried, the friendships I have made through this condition and the progress I have made in the past 5 years.

I have benefited from a positive living environment at my parents’ house, in the country where It is quiet; I have my cat and my dog for company and my two horses who get me out of the house each day. I have a veggie garden to potter about in on good days. Plus I am close to the beach.

Having a positive attitude is also essential for getting through this condition

I try to treat the 3 days of my Ketamine infusions as a little holiday from my CRPS where I can rest and catch up on my sleep, as well as being looked after by the wonderful staff at the pain unit. I have also had the opportunity to speak to student doctors touring the ward about my CRPS

Having a team of Doctors, specialists and practitioners who support me is essential to my care and initially that wasn’t easy. I now drive 100km to a GP because I wasn’t the help I needed in my home town because they did not understand the condition. That is why I feel events like tonight are so important.

Thank you all for listening to my story and for educating yourself about CRPS. Good night.

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Color The World Orange: ADELAIDE: Nov 6, 2017

November 6th 2017 was the 3rd COLOUR THE WORLD ORANGE day across the globe, Adelaide celebrated by lighting Adelaide Oval, the Torrens Footbridge, the Riverbank Precinct and  the Rundle Lantern in orange for the first time. According to the CTWO website Adelaide joined “Forty-nine buildings, bridges and landmarks in four countries, including Niagara Falls and the fountains in Trafalgar Square in London”

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Adelaide Oval and Torrens Footbridge lit in Orange for the first time.

As well as the lighting up of iconic Adelaide landmarks, Adelaide also hosted the first information event of its kind in Australia with the aim of creating awareness within the medical and research fields. The event was titled…

CRPS Mechanisms & Management:

What’s in fashion now? 

This event was a great opportunity for Members of the medical field to learn what it is like for those of us with CRPS and this was recognised by the organisers. Members of the CRPS South Australia Facebook group were invited to participate in the night by giving a 5 minute talk on what it is like to live with CPRS. I was happy to be one of the five who took on this challenge (It was a big challenge for me). Although only four of us were able to be there in the end, (that’s CRPS for you) we all explored different areas of living with the condition, but there were a lot of similarities.

Of course there were also talks by the Professionals. Prof Lorimer Moseley spoke of the new findings in CRPS research, Dr Velleria Bellan who was the instigator of the event(thank you) spoke of her research in Untangling visual and proprioceptive contributions to hand localisation over time. Also Dr Meredith Craigie spoke of her experience of being both a parent of a child with CRPS and also practising in pain medication and treating CRPS patients such as myself.

Overall the night was a huge success with over 200 people from both research and medical fields, Students and also other sufferers from the CRPS South Australia group. Possibly the best bit of the night was the food and wine supplied and also a GELATO CART!!! Yep that’s right, the event was supplied with a Gelato Cart with all orange colored gelato. YUM!!

A big thank you to the organisers and sponsors of this fantastic event and I look forwards to next years event.

 

 

 

Ketamine, Coffee, Food, Family and Student Doctors!

Ah Ketamine. I just love it! Its been two weeks since my trip to Adelaide for my three day infusion. It was a great trip. I went with my second family, Steff, Phil and Amity. It was a great trip even if I did sleep for most of it. We travelled to Adelaide on the Monday afternoon and arrived in time for dinner and had the best Indian food I have ever had from my fave Restaurant Raj on Taj in King William Rd. I have not eaten there in years and it was divine. The next day I had my first day of infusions and I pretty much slept through the whole three days. It went really quickly. Basically my whole trip went much like this… Ketamine, Coffee, Food, Family and Student Doctors!

The weather during this trip was Hot, rainy and humid. It was a shocker and it did raise my pain for the first few days, but by the end of the three days I was feeling good and my pain was at an all time low. It was so nice. Steff even noticed how my presence changed as I came out of the pain. Each morning I was driven to the hospital by Phil who then returned to pick me up that afternoon. The staff in the pain clinic naturally thought that Phil was my Dad and I soon realised that there was no point correcting them. Having fasted each morning and being in need of a good coffee, I introduced Phil to my fave café, Cibo on Rundle St and I got him hooked. Each day we would grab a latte and I would spoil myself with a yummy pastry. If I move to Adelaide I’m scared that I’ll be the size of a house because I love the pastries so much. Yum! After my infusion we would normally relax before going out for dinner and eating fantastic food and I even snuck in a glass of wine when I felt the need. Not sure if that was a good choice but one couldn’t hurt. Lol.

Aside from all the food, two really exciting things happened while I was having my infusions. The first thing being that I got to speak to student doctors about CRPS! On two of the mornings I was asked if I was interested in having a chat with some fifth year student doctors. I was really excited to be able to make around fifteen future doctors aware of CRPS. The average diagnosis of CRPS is made after four years of suffering and most doctors never see or diagnose CPRS so I knew that this was a great opportunity. The students were equally excited to chat about my experience and treatment as well. I decided to be really open with them and the students on the second day really got into my story. It was a smaller group and we were chatting for near an hour and made my infusion run way over. I didn’t mind though. I hope I can have the opportunity to do it again. Hopefully someone will benefit from my sharing my story.

On the last day of my infusion, I was in recovery and chatting with a nurse about the mental strain that CRPS puts of you when she asked if I had seen anyone like a psychologist. I told her about the lack of care I had received from being in a rural area. The next thing I know she is off to ask the clinic psychologist if she could see me while I was in town. The next day she fit me in and it was great. We basically started by chatting about what has happened so far, who I am and how I am coping. Her main concern so far is my lack of sleep and how it is affecting me. I have started on Melaton and will be doing a three month trial to see if it helps. I will now do a phone session every three weeks and meet at the clinic when I have appointments at the hospital. Mostly I’m hoping that I’ll be able to improve my outlook on life and living with CRPS. Already Im looking at what I could be doing to move forwards and not make CRPS my main focus in life. It can’t own me but I have been a little stuck trying to sort it all out on my own. Things are looking up!

Ketamine: Only One Week To Go!

Im sorry for being such a bad blogger, but having CRPS in my left hand and symptoms in the right I feel that I have a pretty good excuse for not wanting to be typing too much. I do think about it and sometimes I even start typing but the pain is too much and I have to stop.

The one thing I hate about the infusion cycle is when is stops working and the pain comes back. Lucky for me Ive only been struggling for the past week or two. Last time it was more like 6 weeks before the next round and it was hell. I only have a week until my next infusion and I cant wait.  The thing about the Ketamine wearing off is that it shocks me at how much the disease progresses underneath the numbing effect of the infusions and then BAM it hits you hard. But Im still lucky because I get lowered pain in between infusions and each one is improving for me. I love my infusions and once the needle is in my vein Im happy. I really hate having the IV put in. Im fine with blood tests though. Go figure!

This time around Im hoping that the shocking fatigue will leave me and Ill be able to do more. It takes me days to get over anything eventful and Im finding it hard to do much at all at the moment. Even sitting up to get out of bed is hard for me at the moment.

I really cant wait for next week. Im going to Adelaide with my “adopted” parents, Steff and Phil. Plus my little Sis, Amity is staying with us for a few nights. I will have my infusions from Tuesday through to Thursday and they will be my “responsible person”. Then Thursday night we will head out to Gawler to stay with Amity, before heading home on Friday. Im also hoping that Ill get to see my darling bestie Casey while im in town. I really do have to make sure I take it easy though and rest up in the afternoons while Im having the infusions. They are my priority after all. lol.

I just cant wait to have the pain settle and I get to lay back and have a sleep. 🙂

I hope your all doing as well. Ill get back to posting after my infusions. xx

Getting Out And About: pace yourself honey!!!!!1

Ive been in Adelaide for the past week and have been staying with my bestie and having a blast. I have to say that when you are ill and have been almost house bound for the past 18 months and not been anywhere on your own, Because you just cant drive that far. Its really daunting for you to be away for so long. I didnt know how my body would cope and Ihad a shocking flare the day before leaving.

But Im glad I did. Ill be going into it all more later. I just want to say that we need to find ways to get out more and have fun. This past week has been wonderful. Most of our adventures have been dictated by my body, but having an understanding friend and a city that is alive with The Adelaide Fringe Festival has made for a great time.  Im stoked that I left the comforts of home. Perhaps we all need to think of some achievable things that we can do and make ourselves a little more happy. Our lives are so limited but just getting out made all the difference to my head space. Yes, I was in a lot of pain and I had one day in bed with a bad flare and could hardly walk a few other days. I even fell asleep on another friend in a cafe because of my meds and CRPS. Lucky she understands and has it too. With forward planning things are achievable. You just have to be flexible as well. At one point I even had to go back to my car to have a rest and nap after a Drs appointment. lol. I made sure that the parking building was central to the hospital and the cafes and shops that I wandered through. Having that rest did me so much good. So I guess its still about pacing our selves but getting out of the house.

Also Its my Birthday on Friday and I really needed a good time after loosing my 30th last year to a shocking flare. I was also diagnosed the next day. 😦

IN THE MEDIA: Chronic Pain, 7.30 South Australia

“It is a common condition, patients suffer from it, doctors treat it but Medicare doesn’t acknowledge it. It’s chronic pain. But what causes it and why do traditional drugs seem to have little effect?”

pain 730

This is the introduction to a news story that was shown on our state edition of the Current Affairs program 7.40. Its really exciting that this show has done a few stories on Chronic Pain already this year and although not exactly about CRPS, It still relates back to the treatments and the health system that I and many other Australians rely on.

I posted about the first story here. Australia’s Pain Epidemic

This story by Mike Sexton and shown on 7.30 South Australia, on Fri, 21 Feb, 2014.  Duration: 6min 13sec. It starts as stated above and then leads into some horrifying, yet unsurprising statistics that Medicare (Australia) has found that up to 5% of patients in Gp’s clinics are seeking relief from Chronic Pain. It again mentioned that most Australian’s suffering from Chronic Pain wait 2-3 years for a placement in a pain treatment facility. This leads to Gp’s prescribing more and more opioid pain Medications and leads to dependency. Clearly there is a cycle here that must be broken.  I’m hoping that the Website will post a manuscript to this story as it has done in the past so that I can post it.

One exciting thing bit of information that I learnt from the story is of a local research project happening right here in South Australia at the Bionomics Facilities in Hindmarsh, is a focus on Ion channels and their role in Chronic Pain. The story went on to report of an investment of 170 million dollars (Aust)  being made into this study by Merck & Co. That is pretty exciting really. I went onto the Bionomics Website and found the following:

“Bionomics has entered into a collaboration with Merck & Co. to develop a novel oral treatment for chronic pain. Chronic pain is a severely debilitating condition with a large unmet medical need. Current analgesic medications which include anti-epileptics, anti-arrhythmics, opioids, NSAID’s and anti-depressants, are either ineffective, associated with a range of dose limiting side effects or have the potential for abuse and addiction. Our novel treatment which is expected to deliver greater efficacy and safety than existing pain medications is directed towards an undisclosed target that has been strongly linked to chronic pain in humans.”

www.bionomics.com.au/research-development/pipeline/cns-central-nervous-system

Well Im off to investigate further and see what else I can learn about this trial and even if I can participate in any way. 🙂

 

When Creina, Jim and Jezebel came to stay!

As much as CRPS/RSD is simply a big load of BS, the thing that I am so grateful for I the friends that I have made all because I have this horrible nerve disease. It’s easy to get bogged down in the bad stuff, but there is no denying that because of Facebook, I have met some awesome people that have been so supportive. For me the day I joined my first FB group was the day it all got so much better.

One of those people is my good friend Creina, from Adelaide. She was one of the first people with CRPS that I met and we have become great friends. She is at the beginning of a huge trip around Eastern Australia with her very supportive husband Jim and sweet little westie terrier, Jezebel.

One their way through to Victoria, Creina, Jim and Jez stopped off at our place in the South East for a few days to enjoy the cooler weather, go to the beach and relax. Well that was the plan anyway! We managed a walk on the beach the afternoon they arrived and then it rained until they left. So much for summer! It was so cold that winter clothes came out and there was certainly no swimming. We were really looking forwards to soaking in the water and taking in all of the magnesium that we could. There is always next time.

What the weather did offer was the opportunity to have a look around the town and take it easy. A quick breakfast and then a look through the shops. This included shopping in the chemist for pain killers and other options. Lol, that’s something only a person with chronic pain can relate to.  We walked the two dogs around the town in between stops. Gemma and Jezebel became fast friends, it was so sad for them when it was time to say good bye.

The thing that I loved about having Creina here, other than having her here…  was that we were both in the same condition and were able to do things without trying to keep up. It was fantastic. We just plodded along at our own pace. I didn’t have to drag myself around in pain because she understood when I needed to stop. I have found that even though others make allowances, it still ends up as more of a compromise and I crash in no time. I am learning to say no though.

Sadly in no time, it was time for them to head off on their trip. They are traveling in a Winnebago and towing a beautiful yacht that they will sail whenever they can. It’s really inspiring to see someone with CRPS achieve their goals and overcome such debilitating hurdles.

Have fun guys. xxx

All photos by C Krause

1, Creina and I

2, Jezebel and Gemma at the beach

3, The Big Lobster (aka Larry), Kingston SE, SA