I’m going on a “Paincation”!

I know how we all get on those days leading up to your vacation…they can grow so long and life just seems to be getting harder. In this, I share with you….with an attempt at a bit of humour!

Enjoy your trip to Mexico….but for me, I shall head to CHANGEpain for my Paincation!

As you enjoy the beach I’ll be paying private care fees at CHANGEpain Clinic in Vancouver for my nurse Tammy and Pain Specialist Dr. Brenda Lau who will administer my long awaited Ketamine IV Therapy…this is MY vacation.  My vacation from pain.

Not from its entirety  but a small shaving off of the pain I endure in a single day  will be worth the trip in a ship!  Well BC Ferries anyway and thank goat for their gift shop!

I know you have worked hard to save for your holiday, I have too. Living with Chronic CRPS Pain I make approx. $.39 a hour.   I don’t get paid for overtime and raises what are they?  I typically don’t have days off, or hours off  from pain until its Ketamine IV time again.  This is the only treatment that will allow my nervous system a break, a reboot..a chance to breathe.  I can’t remember what that feels like, to have this anvil lifted off my chest, to walk freely, uninhibited by the pain.  I only ask for your help because I do need to.

I have been to the  CHANGEpain clinic on two separate occasions for one Day Ketamine Therapy Treatments since starting the fund last summer, and I am now on the cusp of a 2 Day, back to back, Ketamine Infusion. On both of these days I will receive 8 hours of Ketamine IV Therapy,  thus increasing the effectiveness and the duration of my “Paincation” (think remission here).  Doctors who administer Ketamine IV treatments world wide agree that the best results come from a 4-5 day Infusion.

So why do I have to go to a private clinic and pay out of donations and my own pocket to be pain free?

Good Question!

These Ketamine treatments are covered by MSP only if administered in a BC Hospital Pain clinic.  St. Pauls Hospital, up until Last October, was the only pain clinic in BC that offered this treatment.   I had 30 or so ketamine IV treatments over the course of 4 years at St. Pauls Pain clinic, when they cut several CRPS patients loose.

Why you ask?

Another good Question….

Funding for one, as with all things.

And unless the attending physician believes in Ketamine IV treatments (because the hospital does not dictate treatments by Doctors),  they won’t offer it.  (a flaw in our medical system?)

I have recently followed up with St. Paul’s Hospital Pain Program, and was told that I do sit on a 2 -4 year wait list to receive an appointment, that could lead to an Ket IV treatment, and I have learned that the program is no longer offered to anyone outside of Vancouver (Which is Me) . St. Paul’s Pain Program has undergone some changes, Dr. Brenda Lau has taken a sabbatical, and another doctor has retired.

Needless to say, our “own” Victoria Pain Clinic is all but useless to me.   My doctors referral led to an appointment 3 months away, then another, 3 months down the road, only to be told they couldn’t help me!   What!  a pain clinic that can’t help a person with the worse Pain syndrome known to man….and women?   We asked the doctors there about Ketamine IV treatments that were being done at other pain clinics around the world, and were met with blank stares……”we don’t offer Ketamine here”…..

So, with less staff, less funding, and doctors that aren’t educated in the use of Ketamine for pain….. means no Ketamine for me. Or others within BC’s Health care system!

Would a BC Hospital deny a cancer victim their chemo?  No

Would they deny you Dialysis if you needed it?                    No

Why am I a Canadian Woman not receiving fair health care for my pain treatments?  Why must I suffer at all?..all I want is a life with a little less pain to enjoy my family and friends. I shall have my happiness despite your lack of caring.

I have literally come full circle in my pain journey, once again sitting in the hot seat of MSP, on the quest for ketamine to be once again available and covered.. ON my first time around looking for a Pain Specialist and Ketamine Treatments I went  to my MLA, wrote letters…and they were heard. The most valuable call was from Ottawa to Nova Scotia where I was referred to their colleague Dr. Brenda Lau. She is Pain & Patient Care in BC. She saw the need, created it, shared her knowledge,  and is continuing to change pain.

I am taking a day at time, saving and fundraising when I can.  After my 2 Day Ketamine IV Therapy this week the well will run dry.  I plan to fundraise with selling some of my crafts (based on the availability of artists health) to locals.  I will continue to work to raise awareness of CRPS,  and offer support to other CRPS sufferers that come along the way.

….sorry for the long rant…..it just spills out sometimes….

Hugs to you all,


I’m so grateful to everyone who has contributed to my GOFUNDME account!!

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Trial by Fire- A CRPS Documentary

Trial by Fire

I’m so excited to share the news! The documentary “Trial by Fire”is currently being viewed at multiple film festivals in the states and CRPS is in the news. Raising awareness on CRPS is key and Charles Mattocks accomplished that recently at the Hollywood Film Festival. The film “Trial by Fire” won for Best Director in Documentary!

There is a petition going around now for Trial by Fire to be viewed on Netflix & or PBS, please sign to raise awareness and share with others through Facebook.

Please click on the above link to view the trailer…I just can’t wait to watch this movie, I know I’ll be bawling.

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She May Be Fierce

It’s my 2 week Post-Ketamine Infusion checkin.  I allowed myself  some time to recover and process my experience, as it was quite profound. Firstly I have to share that my pain levels have come down dramatically  since the treatment!!! Yahoo is dang right! I have awaited this day for a long time and know leading up to it I was desperately clinging to my lifelines.

To describe the difference of how I feel now versus pre-ketamine infusion is beyond words, it  is literally as though someone has just flipped a switch inside of me. The crazy neuropathic pain that’s invaded my body for the last 7 years has faded into the background, this was not the case in previous infusions, not to this level anyway. I had always felt better a sense of relief with the treatments however this time I REALLY feel and have benefited from the infusion. My family and friends say the can visually see a change. From the reduced neuropathic pain, to my reduction in eye pain(which had zapped the life out of me) to my overall ability to move freely in my own skin. For those of you who have not experienced living in a state of chronic pain your body and its muscles start to seize over time and performing every day mundane tasks can plague you at the best of times. Truth be told I turned on the music the other day and was dancing in the living room! Singing at the top of my lungs too, freely and happily.

As the saying goes: “A picture is worth a thousand words”, well here are a few to help paint my picture.

Counting the sleeps until treatment

Counting the sleeps until treatment

All hooked up and at about the half way mark here.

All hooked up and at about the half way mark here.

Out n'about after treatment with my partner in crime

Out n’about after treatment with my partner in crime

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My State of Grace

The past few weeks(sorry about the late fees GVPL) I have been lost in the pages of Deepak Chopra, The Power, Freedom and Grace. Now let’s talk about the universe taking me by the hand and guiding me safely to where I need to be. His words have made an impact on me, on my universe. He has helped me heal in understanding loss and the presence of spirit. I also believe more now than ever in the power we possess to make change and balance in our lives.

 So with that shared…nothing like cracking the egg open…

With the start-up of my Gofundme account we have been in contact with local businesses and media to help share my story and create awareness of CRPS. I’m truly blown away by the love and support of my family and friends, their generosity has overwhelmed me with emotion and love.

A couple of weeks back my daughter and I had the opportunity to be interviewed by Kendra from the  Victoria News, so very exciting!  My fellow CRPS  peeps know any new situation can me cause stress on our bodies, Fight or Flight Mode, it’s spoon consuming but well worth the investment! This has defiantly been difficult being vulnerable and open, however I do see it as part of my journey, just something else that will aid me in healing and finding peace.

In Deepak’s pages he shares that…

POWER: the ability to create, to accomplish, to act effectively 

We can manifest anything we want…OK here comes my magic wand and a Ketamine Infusion!

Interview with Vic News

Interview with Vic News

Since the interview we have spoken with a representative from Providence Health-St.Pauls, we welcome the calls and are all seeking the truth. My questions remain unanswered; how long will this referral process take? What will be my wait time for an infusion at St. Paul’s ? Will I be able to receive balanced care and a series of consecutive ketamine infusions as I have in the past?

My Power– I have created the moments….I am accomplishing the task of asking questions and requiring answers….I’m acting effectively by creating change and taking my healthcare into my own hands. We are thrilled to share I have a Ketamine Infusion booked for July 27th at a private clinic. This treatment has the potential to reduce my pain for up to two months, and this in turn reduces my opiods intake. Now that is music to my ears!

These Ketamine Infusions make a difference to my life and that of my families. During my interview I witnessed my daughter share in her experience with my illness, it broke my heart. However I see the balance in this,  I witnessed  her strength, her nurturing spirit, a true gift indeed.  I’m proud beyond words. Learning  to live in the moment has created a sense of peace within, a welcomed feeling, an empowering experience.

I’ll quote my mantra, “I am me, devine and powerful”…now lets move some mountains!

warm hugs, Trudy

State of Grace, the effortless flow of existence;love and favour freely bestowed on us.

Deepak Chopra

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I’ve Lost My Glass Slipper-Ketamine

Ketamine & CRPS

Ketamine & CRPS

Luckily for me this accidental discovery that happened in Germany works and works well on my chronic pain.

My Pain Specialist Dr. Brenda Lau started me on Ketamine IV Therapy immediately after my first appointment at St. Paul’s Hospital in Vancouver. I’m very fortunate in that one, Dr. Lau is my Pain Specialist, and two,  that I have had 28 Ketamine infusions over the last 3 years at the St. Paul’s Hospital. No one else has broken my record yet! I’m a little bit of her Ketamine Guinea Pig, and I’m so okay with that.  The ketamine infusions helped in reducing my pain for a  period of 4-6 weeks, allowing me a break from taking opioids and have some quality of life. Those of us know that with CRPS can come the unrelentless pain, the kind that robs you from living your life to the fullest.

I often refer to my Ketamine Infusions as My Glass Slipper…just like Cinderella it allowed me to live my dream of being pain free. Just as in the Fairytale when the Glass Slipper drops..we all know what happens to Cinderella…

 Well I have lost my Glass Slipper!



The Ketamine Infusions I was once receiving are hanging in the air.  Dr. Lau has taken a one year sabbatical from St. Paul’s for a fellowship at UBC and has passed along my file for referral to her co-collegues at the Pain Clinic….we’ve been told the wait list to receive Ketamine is booking into 2018!

My last Ketamine treatment was in March in Vancouver and since then my pain levels have escalated, making my life shall I say not worth it many times.  I have had my share of more bad days than good lately. However I’m always optimistic, I know how fortunate I am, being surrounded with wonderful family and friends and trust me they are cherished….their hands are tied, they watch me in severe and agonizing pain and can’t help…well until now.

I have started a GOFUNDME account to help raise the money for Ketamine IV Therapy at a private clinic CHANGEpain in Vancouver. This is by far one the most difficult things I’ve had to do, ask the universe for help. My counsellor reminded during my last session that I am deserving..hard to swallow, but I do deserve to be pain free…don’t we all?

Trudy Winder's Medical Fund

Make sure to check out this fact filled article on Ketamine- The Cure from the Pain Pathways Magazine this month.

Thank-you to all that have supported my Medical Fund, I’m truly grateful.

warm hugs,


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My average is 12 Spoons a Day, what is yours?

It is time to start unleashing what’s trapped inside my brain, let’s  hope this will relieve some of the pressure inside my aching skull!

I’ve uncovered many gems in the last while since my blogging break and one of the most valuable ones is the Spoon Theory by Christine Miserandino. On her website But You  Don’t Look Sick she shares her personal story and analogy of what it is like to live with sickness or disability. She has most recently released this Piktochart which paints the picture of her Spoon Theory, depicting how many spoons(energy) it takes us to carry out tasks of every day life.

I'm a 12 spoon a day girl, what are you?

I’m a 12 spoon a day girl, what are you?

My average is 12 Spoons a Day, what is yours?

I’ve been up since 5:00am thank-you to my night sweats that have returned!! Ugh I wake up periodically as the sweats happen throughout the night/morning…then the shakes start because I start to freeze, I’m hot, I’m cold. I lay there, tossing back & forth until I finally get out of bed strip off my soaked pj’s and jump in the shower, the only way I can warm up. I know I’ll be ready when menopause hits, you know me I’m just always trying to stay ahead of the curve LOL.

Any who back to my spoons….as I shared before my average is 12 Spoons a day, today I have already…

Got out of Bed                     1 x SPOON

Showered                             2 x SPOONS

Worked on Blog                 4 x SPOONS

So I have used up 7 0f my 12 spoons for the day, leaving me with 5 spoonfuls of energy to get me through the rest of today. If I go over and extend myself, which I’ve been known to do in theory I’m taking spoonfuls of my energy from the next day. Very basic but  so valuable in sharing with others what we’re able to do in a day.

Time to rest my brain for now,


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My CRPS Journey Continues

During my break from blogging (yes I did miss it) I believe I have finally learned to put myself and health first.  A task that is indeed easier said than done, truly had to be done.

Over the years during my quest to learn more on CRPS and Chronic Pain I choose a path of self-management, learning to live with the pain, how to cope & reconnect with myself, I volunteered through UVIC as an instructor for their Chronic Pain Self-Management courses, volunteered with Patients Voices Network, I started a support group Mend Pain and dreamed…yet again I did this…to start a pain society. Just think this is my medicated, vaporized, CRPS brain at work, imagine me at my optimum health!

I had the opportunity to meet some incredible people during this time whose strengths and support helped me beyond words. Many lessons were learned, a great quote shared with me by my counsellor, “When the student is ready, the teacher will come” I regularily  continue to prove this and look forward in what is to come.

I couldn’t sit idle, scatter brained and all, partially carried over from the old me, but knowing that so many others were suffering, not coping, not living with pain killed me. At each time I did what I could, gave and shared what I had to help others in their journeys, but now it’s my time.

At this point in time I have no more energy, my condition and living with my current levels of pain are taking all that I have. It was clear to me after instructing my last on-line UVIC course, a choice had to be made, the mental wear on me was too great. Let’s not forget the emotional and physical drain any activity can have on us.

I’d like to share with you again my mantra…

In mind, body and spirit I heal

I will continue along my healing journey with no obstacles

I feel my every breathe ground, cleanse and strengthen me

I will surrender and allow myself the gentle nurturing needed

I am me, divine and powerful

During my meditations  I remind myself of the words I’ve written to help pull me from the agonizing pain and  the darkness. I know the importance of looking within to pull strength from one’s self, surrendering and choosing to surround yourself with the love of family and friends.

“We always have time for the things we put first”

warm hugs,


A good day!

A good day!

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The Practice of Floating

Have you ever Floated or even heard of it?

I hadn’t until last week and truthfully I can’t wait to start. The Float House will be opening here in Victoria next month, and I will be lined up at the door…well it might be too cold and you know how well I do with that, I’ll be waiting in the car then.

Picture yourself closing your eyes and Floating for 90 minutes…the escape…the silence…turning yourself off to the outside world…and looking in on yourself. As pictured below, you Float in 10″of water that has been filled with 800lbs of Epson Salts, alone in a Float tank( aka. isolation tank aka. sensory deprivation tank) yes, just like Olivia did on the past T.V. show Fringe.

The Practice of Floating

Health Benefits, body and mind, for pain management, stress relief, increased immune function and endorphins, the list goes on. On their website under the heading of Why Float? they had me Floating at their first point alone. It reads as follows:

A Float Tank

Relaxation Response

The tank suppresses the functioning of the sympathetic nervous system which when active produces our ‘fight or flight’ response. And it then activates the parasympathetic nervous system which is responsible for relaxation, healing, replenishment, etc. Some physical symptoms of the relaxation response are decreased muscle tension, decreased blood pressure, decreased stress hormones, and increased endorphins.

The thought of my ‘fight or flight’ response being turned down, I’m breathing a sigh of relief. After my first float I promise to let you know how it was and the benefits I received from it. I kid you not I have been at their website at least twice a day, learning, sharing and just anticipating my 1st Float…ahhh


I’ve enjoyed 3 Floats now and will be a floater for life! Firstly The Float House in Victoria is amazing, the staff, the decor, the experience!
Each room has a shower, the Floating Pod/Capsule and it’s large filter. All pods are equipped with light therapy and choice of music.Once you emerge yourself into the salt water you immediately become buoyant, all the pressures of the universe are gone and you are weightless. My first visit was a discovery experience,learning to relax in the pod and a great chance to practice some deep breathing. My following trips to the Float House were incredible as I was able to meditate and fall into a peaceful sleep both times. Such a treat, a peaceful escape from every day chronic pain.

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Pain Matters

The Discovery Channel(US) aired a documentary chronicling the lives of 6 People Living with Chronic Pain. A Veteran, a 2 time Stanley Cup Winner, a car accident survivor, someone with Fibromyalgia and someone suffering with CRPS. Some of the top specialists in pain share their thoughts on the future of pain management and treatments.

Pain Matters Documentary
Click the image above to follow the link and view the Discovery Channel Documentary “Pain Matters”

I’m interested on your feedback on the film and would love to hear back from you. All information obtained within will be kept strictly confidential. This information will not sold published or distributed.

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November is National CRPS Awareness Month

It’s never too late to talk or blog of anything!

I’m a little late but with the start of November I was busy holding up my end of my commitment to myself for National Pain Awareness Week. I vowed to blog as much as possible between this site and my http://www.mendpainsociety.org with this, and my annual submissions to the local paper and news channel I was wiped to say the least. It’s about raising awareness one story at a time and I did what I could, mission accomplished!

I awoke this morning with pep in my step(well my brain)no thanks to my beloved Ketamine Infusion from yesterday at St.Pauls, however my goal today was to blog of…

National CRPS Awareness Month!

Orange is their chosen colour, to signify hope for the CRPS Awareness Flag, let’s wear it with pride and make others aware of our great journeys!!

Hope 4 A Cure

My first contact with a website on Complex Regional Pain Syndrome was with PARC Canada, Promoting Awareness on CRPS and Reflex Sympathetic Dystrophy. Developed by Helen Small this non-profit society continues to keep those of us with CRPS in the know. They have a user-friendly site with options to receive their quarterly Newsletter and you can even receive Peer Support with their Deluxe Membership. I always look forward to receiving their newsletters in the snail mail, it’s a warm support hug from St. Catherine’s, Ontario and I love that they represent us Canadians so proudly.

If you click on their logo you’ll be directed to their site.

Sometimes I refer to myself as a "pot-pourri Of Pain"! No two days are the same, no pain sensation is ever the same, with everyday, month year comes a new experience 🙂 One haven't shared with you yet is my newest form of pain, a Glomus Tumor. They are originally found in or around your fingers or toes, I tend to set my own trends and mine of course is on the top of my hand. It has taken up residency on my hand for over the last year now, yes against my will. It took it's claim on one of my original CRPS site's,my left hand this past year. It has taken over as the top pain producer on my body and has been at the top of the charts for the last 9 months. This form of pain literally tries to take my breath away, we struggle over it and I don't back down easily! To calm this GT devil I use my Infa Red Heaters to soothe the pain, deep breathing to bring me back to ground and since the spring I have taken to using a 2.5% Lidocaine Cream and Tegaderm Film to numb the area. Luckily the numbing effect seems to last for a couple of hours. My doctor recommended I tried the lidocaine as the pain was truly unbearable, thankfully it cuts the edge off for me. My doctor had recommended me to see a plastic surgeon however the wait has a been far too long combined with a set of Life’s Blunders I still wait. One recommendation sat in a pile at the specialist office as they were unaware she was off on maternity leave and the other a miscommunication among staff…I had an appointment in July but was not told. My last communication was i'll be contacted by the Plastic Surgeon sometime in January of February with an appointment date. bummer.

Glomus Tumor

Numbing Agents to the Rescue!

The lidocaine will absorb

The Glomus Tumors(sounds worse than they truly are) account for less tun 2% of all soft tissue tumours, and are painful(severe understatement when you have CRPS) and are sensitive to cold. Any friction to the area, like trying to get something form a pocket, or cold breeze cause an insane amount of pain.

It is about the here and now, what can I do now to get through the pain? I keep it wrapped, warm, lidocained and protected as possible. I distract myself, read, blog, truly just another part of my job. I continue to learn anatomy, try new creams and treatments, and keep you informed!

I try to keep it all in perspective, in my life it is still just a pain in my hand.

warm hugs,

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