~Click on Pop out player to hear some music~
Hello, I am Melanie and I am 27 years old. I am married to a fine gentleman Angus, since March 2004. I have completed a degree at University, 1/2 whilst working and living with a condition called CRPS/RSD. I hope this blog will enlighten some viewers on CRPS/RSD. I don’t have children yet, but am hoping I will be able to next year. My cat Cruiser & dog Oscar are my little boys for now..LOL.
I would consider myself to have many different interests, besides being a Patient Advocate for People with Complex Regional Pain Syndrome (CRPS) I am well rounded in life experience for my age, and have been raised to be one of High Moral Integrity.
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Favourite Book – My Steve – Author Terri Irwin
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Favourite Movie – Don’t really have a favourite but really liked the following – Bad Boys I & II, Rush Hour (1 to 3), How to Lose a Guy in 10 days, Knocked Up, I now pronounce you Larry & Chuck, The Interpreter and I think that is all I can remember for now.
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Favourite Music Artists – Delta Goodrem, Alanis Morissette, 80’s music……..
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Hobbies – Making & designing jewellery, Mosaic Art Work & photography.
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Favourite Sport to watch – Rugby League
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Favourite Team – Newcastle Knights, and NSW in the State of Origin!
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Favourite TV Shows – Neighbours (OMG LOL), House, Numbers, NCIS, Extreme Makeover Home Edition (American version of Domestic Blitz – bigger and better).
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Favourite Reality TV Show – Australian Idol and The Biggest Loser.
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TV reality show I am warming too – Carson’s “How to Look Good Naked”. He is a genious, kind and sweet man!
Just wanted to drop a note and introduce myself… I like reading your blog … you have great posts… sorry to hear that you are battling RSD … but I like your positive attitude about it!
I run the news aggregation site rsds-crps-news.blogspot.com if you’d ever like to check it out…
Kind Regads,
Jason
PS Have you considered Hyperbaric Oxygen Therapy? My Mother is currently working on it and is having noticeable improvements…
Thanks Jason!
Your site will come in handy for scheduling posts for when I wont be online, when I am too ill and the fact I am moving house in July 08 and may be without the internet for a week or two lol.
I don’t have access to Hyperbaric Oxygen Therapy where I live. So many things I could do with I actually do without!
No access to a proper hydrotherapy pool etc!
I do the best I can with the resources I have.
love & light
Mel xx
Mel –
I just stumbled upon your website and just wanted to tell you how grateful I am that you have gone to this much effort and are willing to share your experiences.
I too have CRPS, am 41 years old, have been married for 14 years and have two wonderful children (boy 9, girl 5).
It has been nearly 5 years now that I have been ill and this disease has taken so much of what matters in a life away from me that it has too often been easier to see ending things then continuing on.
In all honesty if it weren’t for the kids I wouldn’t be here writing this today as their love for part of me is greater then their pain/sadness for what I can no longer provide.
Though things are getting better for me now the rarity, lack of understanding and inability for me or the family to talk to others going through the same thing compounded an already difficult situation. Sufferring in isolation is all that is left and why I have described my experience as being closer to torture then any illness I have seen.
One day I hope to tell my story and try to help others, but for now my focus has to be on finding new joys to replace all of the ones that have been taken away.
Regards,
Steve C
Hi Steve,
Sorry it has taken so long to reply to your message! I moved house not long after your message was posted!
Thank you so much for your comments! They really do mean a lot to me!
I really hope you find others soon with CRPS you can chat to, about everything!
It really helps having friends that have CRPS you can chat too!
Congrats on the positive outlook also, I had to change direction totally when I was told I have CRPS! It can be hard letting go of the old joys or accepting what is and there is always a grieving process! But there are always plenty of new joys to discover out there!! It does change your piorities in life!!
thank you, take care
Mel xx
Hi there Mel
I found your blog today while I was wandering around the internet.
So far what I have read has been interesting and I am looking forward to uncovering more of your writing.
I also have CRPS but not for as long as you have and still adjusting my outlook on life and expectations. I’m a physio student and I find, like you that my purpose in life is now to educate as many people as I can (including health professionals) on what it really means to a person to have CRPS.
I’m from NZ so not so far away from you and I have a friend studying Med in Armidale!
I’d like to link your blog to mine if you dont mind? take a look and see if you think its ok.
Take care and I hope you had a lovely Christmas and have a nice New Year and that it brings good things to you and your family.
Felicia
Hi there Felicia,
Wow I went to Uni in Armidale!! Before medicine was offered up there. They must of had to construct new buildings or something since I been there to fit it in!!
Sorry to hear about the CRPS!! Ya know what we CRPS patients call physio’s LOL Physical Terrorists LOL………
I think I have your email, so I will drop you a line.
Have a good new years too!!
Take care
Mel xx
Hi, Mel,
Came to say hello on the recommendation of the lovely Felicia. Glad to see there’s more reading here than I will fit in tonight so I’ll happily return.
I was injured at work in March ‘06 and developed CRPS from that, so going on 3 years – though I wasn’t given the official diagnosis until February ‘08!
Glad to come back soon,
Lisa
Hi Lisa,
Welcome, I hope you find my blog informative, interesting or whatever LOL…………
Felicia has my email address if you want to email or add me anywhere LOL……
Nice to meet you!!
Mel xx
Hi, Mel! Wow, finding your website today has been a much needed lift lady!…..I so appreciate, respect and admire your direct honesty and insight. I have CRPS Type II (injured in summer of 2003), had back surgery on herniated disc L 4/5, only to wake up far worse off. Have done 3 steroid shots, 3 nerve blocks, 7 MRI’s, extensive p.t., etc., had the spinal stimulator implant (made it worse too) and had it removed 4 months ago. I would literally chew off my entire leg if it would help! This is such a cruddy way to live. I don’t have insurance (was 11 days shy of gettting it at work when injured and laid off), so getting help has been even more trying. Had zero debt when I got injured and now the amounts owed are so enormous that it is downright overwhelming. I’m exhausted! Here in Florida, at least, many of the drs. seem oblivious – I’ve even been told by one that I don’t pray hard enough and that I must have bad kharma! Don’t know what God this Dr. believes in, but clearly not the loving, non-judgemental God that I believe in. Unfortunately, even in the medical field, I have come across so many that are clueless, uniformed, feel this need or desire to put me in a box, particularly since I have found very few meds that help even slightly, which makes it even more trying. Right now I’m looking into the ketamine coma or infusions. Was reading in your 2007 blog, but wasn’t clear if you did indeed try the ketamine?? I’m not superwoman, but I’m still a feisty Southern broad with a passionate soul & spirit and my heart goes out to anyone who lives in horrible chronic pain….and I totally agree with you that pain is NOT a competition….losing ones quality of life feels the same for everyone, I believe. It can be very isolating – I’m an empty nester and seldom am up for getting together socially with the few friends I still have here or even my own family (my spirit wants to, but most times my body says hell no!). While I know there are real empathic people out in the world, there are still enough others that are down right cruel and/or ignorant. Get real folks! Harsh? Perhaps, but it is my truth after almost 6 years of this….and so, I am ever so thankful to finally have a used computer in my home again (donated recently) to open my horizons much further, to hear others needing to vent, to receive encouragement and if possible, to pass on encouragement as well. Here’s one of my favorite quotes “Never look down on anybody unless you’re helping him up” by Jesse Jackson. A highlight today….the wisteria is blooming in my backyard and smells heavenly!
Take care, Marie
Dear Mel!
just stumbled over your block today while searching on that 5 day coma therapy…hope you´re doing better by now but are not sure ´cause you did not reply on Marie´s question above. Actually I have the same question, have you undergone the ketamine coma therapy and did it bring any improvement?
See, luckilly I am not affected by CRPS but my girlfriend is suffering since one year after smashing three fingers in the left hand. She tried already the stelatum blockade with no improvements, traumal and amytriptilin at different dosage, but as you know for sure that is altering your personallity, changing your mentallity and is not giving any cure. Hence now she is thinking of the ketamine coma treatment. We are based in Germany, so even going to Tübingen (reffering to the article in your blog!) is possible…so if you couls share some of your experiences, it would be very helpfull. All the best to you and never give up hope!
Yours, Jan
Hi Thanks,
I am going okay for someone with CRPS!! Battling on! No I haven’t had the Ketamine Coma. I have only had the awake low dose version, here in Australia. Wish your friend all the best!
Mel x