Nichola is a strong and determined woman who faces many daily challenges due to living with Arthrogryposis & Complex Regional Pain Syndrome.
Taranaki
Nichola is no stranger to adversity. She has defied the odds since the day she was born 35 years ago. Whilst she is a strong, determined woman she has reached the stage in her life where she needs some extra assistance to help maintain and hopefully improve her quality of life and physical and mental wellbeing.
Nichola was born with Arthrogryposis, which is a rare genetic disorder that causes curved (fixed joints) with significantly reduced range of motion and clubbing of the hands and feet. Almost every joint of Nics is affected, and she has had dozens of surgeries on her feet, ankles, hips and hands, in an attempt to improve her functioning. These surgeries enabled Nic to walk and work as a nurse for 12 years. She also has a severe curvature of the spine that interferes with her lung function.
On the 24th June 1998 she had a very complicated surgery to re-fuse her right foot renewing bone grafting and replacing bolts, due to constant foot fractures. This surgery caused severe nerve damage, and she developed Complex Regional Pain Syndrome (CRPS). CRPS is a chronic systemic disease characterised by severe pain, swelling, and changes in the skin.
CRPS has the unfortunate honour of being described as the most painful long term condition by the McGill Pain Scale, which is a medical tool used to measure pain. CRPS pain is measured higher than child birth and amputation. The quality of the pain varies, but Nic describes hers as burning hot, stabbing, electric shocks, and feeling as though her legs are in ice cold water for hours. There is a constant deep, dull ache. She gets an all over body itch that responds to no medication, and her skin goes bright purple and mottled and is extremely sensitive, meaning she can tolerate wearing mainly jandals year round. She has had numerous slow healing ulcers and bone infections triggered by the nerve damage lack of blood supply, and has spent many long nights in hospital receiving antibiotics. Wearing clothes and showers can cause intense pain and sensitivity. Nic needs crutches to walk and is getting her wheelchair upgraded (receiving this 20/1/15) to an electric one as another symptom that affects her is dystonia, where her muscles involuntary contract, leaving her hands in tight, unusable fists, and her legs taking on tight involuntary positions, jerking and causing her to stumble and fall. The dystonia attempts to turn her feet in a fixed, inwards position but the bolts and pins make this impossible and is incredibly painful.
CRPS has spread to her hands and arms, and her internal organs, causing cardiac, stomach and gynaecological dysfunction. She has had procedures and surgeries because of these issues, and CRPS is expected to worsen over time.
There is never a day without pain although the intensity does vary. From the moment she wakes up she is achy, sore and exhausted. She is unable to turn in bed without pain, and often she only gets a couple hours of sleep. Things that we take for granted every day like a hot shower, someone touching you and even wearing clothes and shoes can cause immense pain. Her mobility is affected from the dystonia (muscle spasm) and intense pain and muscle weakness, and getting around the house is becoming increasingly difficult. Although Nichola is on a wide variety of meds her quality of life is still less than average, and with her condition getting worse, there is no medication that has been invented that provides her with the relief she needs to function well. Dozens of surgeries, drug infusions, and multiple pills taken daily are the norm.
As well as all this Nic has bipolar disorder. Her lithium that is required to keep her moods stable and her many pain medications don’t mix well and this drastically limits the pain relief she can take. It also means she has to take even greater care of herself with quality rest etc
On 1 September 2014 Nic had a MRI scan which showed narrowing of the spinal bones in her neck (stenosis) causing pain and weakness in her arms, and osteoarthritis in her entire spine. Previous tests have discovered osteoporosis.
Nic is a great believer in non-medicated pain relief. She does not sit feeling sorry for herself but is often seen cycling around the community with her crutches attached to the front of her bike. She has a large vegetable garden and takes pride in her plants. She is also involved in her community as a Telephone Counsellor for Lifeline Aotearoa, and prior to her dog recently passing away, they were weekly visitors at a local rest home through Canine Friends Therapy, with her dog Licorice working as a Therapy Dog. This will continue when she gets another dog. She is able to work a small amount per week, as an on-call Registered Nurse for the NZ Police taking blood off drunk drivers. These things keep Nic actively involved in her community and enable her to continue contributing to society, even though her physical condition has deteriorated. She has been described as a ‘Nike girl’ by a former employer, as she just gets on with it’. Nic tackles everything head on with a smile and sense of humour but I know that the grief she feels at times is also overwhelming, as she copes with her incurable, debilitating conditions. This is where you come in. There is one thing that Nic needs that she cannot get with great attitude and sense of humour alone.
A pressure relieving Tempur mattress on what is basically an electric hospital bed, enabling her to change pressure and ease pain on different parts of her body. It has a ‘zero gravity option’ enabling Nic to in essence, ‘melt’ into bed. The massage setting would mean she would be able to get blood circulating properly and being pressure relieving, would mean the delicate pressure points in her back get much needed relief. However I would love to ease some of the strain for Nic and so I am asking you please to help me help her. I see the strain and tiredness in her face and I know she is struggling. After doing some research, I have discovered that this bed and mattress would make life that little bit easier for her. She has tried the bed out and the bliss on her face was priceless! The mornings are particularly hard, after a restless uncomfortable night knowing the hurdles and strains she will face that day. It will mean she is able to continue being active in her community by having reduced pain. R.J Eagars have come forward with a very generous offer to help Nic. They are offering a queen sized bed with the appropriate mattress for $3989, which is around half the retail price of $7560, and inclusive of gst, delivery and set up!! Thank you so much guys, your generosity and input into Nic's life is very much appreciated! Cheers guys!
Any excess funds will be used for other areas in her home that require modification and not covered by MOH provisions.
Nic and I are good friends and have known each other for a number of years. I have seen her deteriorate and struggle more in the last years and I am committed to helping her fight her battles of AMC and CRPS.
The last update. 28 March 2015
Hi everyone, its Nic here, and this will be the last update as this fundraising page ends on Wednesday.
In early January after a close friend recovered from her very first chemo, she suggested we start a fundraising page for me so I could get some much needed relief for my multiple health issues. The treatment required was not life changing surgery overseas or unfunded medication. The page would fundraise for a bed, one with all the mod cons, a bed that was made out of soft memory foam; that was fully adjustable like a hospital bed and had built in massagers. Although excited, I was a little embarrassed at first. I knew how amazing it would be, but It did not seem necessary; surely I wasn’t ‘bad’ enough? I was worried people would scoff at the notion of fundraising for something many people desired but could not afford. It wasn’t a life or death matter and I struggled for about awhile until the first donations started coming in.
We started publicising the page and to see it being shared was exciting. People remembered me from my teenage years, the smile on my face despite hardship, old work colleagues and school friends all kicked off the donations and it was incredibly humbling, rewarding and very encouraging. The day we were in the paper kicked off the donations fully and many were from strangers, many from people I knew, and some were from people who tried to disguise themselves (I know who you are and THANK YOU!!) $5, $10, $300. The amount never matters. It’s exhilarating to know you all cared about how well I slept at night, my comfort, and hopefully decreasing pain.
I think probably most important is that our lives DO matter. People have shown me in the last few months that how we live is more obvious than we think. I got comments from many people who had noticed my resilience, my smile and my faith going back 18 years. MY life matters. Regardless of whom I used to be, and who I am now (speedster on the wheelchair chook freak obsessed with animal rights), the significance of our lives doesn’t change because circumstances do. They may just take a different perspective. Either way, live your life so that others may see the light from within you. We cannot let our light shine under a rock, it casts its’ light on a hilltop.
So, the bed is incredible. I can move in it without terrible pain in my back and neck, it's supportive, comfortable and being able to mechanically control the position is great for relieving pressure when I'm struggling to move. Also great for watching TV and reading!!. I feel weightless in it and it really has made a difference. Thank you so much, be blessed.
Thank you so much to my beautiful dear friend Elise, who despite the life changing issues of your own, wanted to help me xx
Michael Eagar (Owner of RJ Eagar), thank you so much for coming on board and offering me this bed for half price, and to Dwayne for seeing the fundraising page on the Inglewood Town Noticeboard Page on Facebook and setting it all in motion.
We will be in the Midweek paper on Wednesday if you’re interested.
Kia kaha
Nic
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