Buyer Beware

I met Janice and Shane on July 20, 2019 I had heard of them a few weeks before I met them. When it dawned on me who they were I knew I had to help them tell their story of buyer beware. The thing that strikes me about Janice and Shane is their kindness and generosity and their lack of anger, once you have read their story you will understand.    Here is their story as told by Janice

In 2015, both my parents passed away with two months of each other. We were lucky to have been left a little money in the estates and decided to finally settle down and buy a home. Due to my being diagnosed with Rheumatoid Arthritis and Gastroparesis we wanted a dream home that was on land outside the city, but close enough to my doctors and family. We dreamt of a place that our dogs, six of them plus their friends could run and bark without the neighbours complaining and I could have a garden to keep me busy. I haven’t been able to work since 2009 and I’ve since started taking photos as a way to distract myself from this nightmare

We first met Paul Sirois at the Edmonton Cottage Show in 2016. He was running a booth that displayed Timber block homes which I had researched and thought would meet our needs. We left our names and emails to have him contact us after the show. On April 23, 2016 we received an email with the Timber Block logos from Paul Sirois directing us to the website for home design. We did not have land yet and he mentioned his wife is a realtor and began sending us listings based on our requirements. We were then passed onto Doug who was working under Paul’s wife with Royal Le Page. We picked the Newton floor plan off Timber Blocks site and made modifications for an open floor plan and three car garage. I loved the all on one level design, which as my RA and other health issues progressed; I needed to make sure I would be able to live in my house long term. He assured us the changes would be in our $400,000 budget. We found a property and with existing services that we were assured could fit our needs and closed the deal with possession at the end of May. We paid the 1st payment for the designs and signed a contract with Escape Homes. We modified the contract to include GST for the total cost of $400,000 with Completion date of November 2016. We approved designs which evolved around my kitchen, which as a former chef was a huge necessity and made the next payment for Engineering designs June 2016.

Nothing moved on the project until August when they tore down the existing properties and cleared the land. August 15 we discovered we had property vandalism and reported it to Paul Sirois and police and the Escape work crew installed a temporary gate with key box. August 22, we made the next two draw payments which were for lot clearing/servicing and contract order for SIP panels and log work.

September 1, 2016 We signed the permit paperwork for Lac St. Anne county. Nothing happened with permits until September 27. According to the schedule given the foundation payment was supposed to be on September 9 but nothing happened and the hole was full of water. We are now way past our initial completion date. Foundation completed November 22 and another payment was given at Escape Homes new offices on December 2 to pay for garage and wall delivery. At this time, we were told that the plans were changed to include a full basement instead of the partial crawlspace on the original designs. At the time Paul said there is no extra cost involved since it didn’t change the cost of the foundation or floor plan. We did not sign a work order for the change, nor were we consulted prior to. Revised completion date given January 2017. We advised them we were planning our wedding August 2017 which will be on the property. Told no problem and we had better invite them.

After Christmas we noticed no work progress and the house was left open to the elements. We were asked for a “lock up advance” via email on January 8, 2017 and against our better judgment we paid on January 9. At this time we were given another completion date of March/April 2017. This put us in the position of homelessness as my parents estate had been settled and the house was sold as of March 1, 2017. Again we expressed our concern and fear as we were planning our wedding and invitations had gone out. We set up a fixture selection meeting February 4 with assistant Dustin. We were assured we were their #1 priority and not to worry. After seeing little to no progress we contacted Paul again on February 16 at which time he offered to find us accommodations through to May. End of April still no progress on site and issues with the budget started to be brought up. Our selections for flooring and metal roof materials were under budget but Paul and Dustin were having issues with contractors. We had been making regular site visits and many times if crews were onsite we saw them sitting in vehicles or by the bonfire. No progress was being made. Around end of March we noticed the office for Escape Homes was vacant and up for lease and a number of employees had been let go. On May 4, Paul finally responded to our emails and stated he was working on getting investors for the company as challenges of being so busy and assured us that he hasn’t forgotten our urgent need or our wedding plans.

We received an email May 5th from Timber Block saying it had terminated its relationship with Escape Homes and Paul said it wouldn’t affect us.

On May 15 Paul emailed stating that the company is recapitalized and that his focus was to prevent further degradation of our property. At this point it has been sitting open to the elements since January, no windows or roof.

On June 9 After many emails and phone calls, Paul emailed to advise us that the house won’t be ready in time for our August 4th wedding. Less than two months to rearrange the entire event. On June 29 I received an invoice from Wayne’s building supplies. Shane called Paul and surprise he answered, and he told Shane that we should pay suppliers directly as we refused to pay any more cash to Paul. We felt that we were being held hostage as if we didn’t buy the roof it will be damaged further so we paid it. We had to move our personal property off site and Paul arranged a Seacan to store our stuff onsite. Roof was delivered July 14 and it sat uninstalled. Paul offered to set us up in a RV onsite which we agreed only if it had all facilities as I have serious medical conditions that would make things difficult to live without all services. After not hearing from anyone since July 25, and no progress onsite, Shane called Paul and yelled at him and threatened to pull our contract on August 6. Paul said he was in ft mac and that the people he left in charge of our site let him down and again assured us that he will handle things. I responded that we were beyond disappointed and that trust was blown. He begged us to stick things out. Seacan delivered August 23 and rv delivered on the 25. Rv not set up as per our needs, advised Paul it wasn’t ready to move into. Noticed basement was full of water again and sump pump not set up, forwarded pics to Paul.

On October 2 M&H crew completed the roof installation. October 10 the trailer still wasn’t ready to live in, and advised Paul that it would need to be skirted and winterized or he will have damage. October 13 we were told that basement prep and plumbing is scheduled and windows were ordered putting completion into end of November. October 16 was told Alex was working on well and septic details, thought this was done last year, but was just “discussed.”

October 19 Email from Paul advising us that his Fort McMurray project was delaying cash flow on our project and that Durabuilt windows needed to be paid and the plumbing company needed $5000. This freaked us out as we told Paul back in June when we paid for the roof that no more money was to be paid by us until we saw the financial situation and a cost summary. We paid an advance a year ago to take us to lock up and we are still not there. Received several conflicting emails regarding our project costs which did not make sense and he couldn’t clarify. Was told on October 20th that our appliances, which we had to choose in order to design our kitchen was not included in the total cost of the home as I was taking cheques to cover the delivery of our windows and plumbing. Told Paul that we were extremely unhappy and we needed time to think things over before we pay any more money. Was basically told that delays were going to cause more problems that he wanted to avoid and was told over the phone that he’s the only plumber that will work outside of the city and we had better get him paid if we want to move forward; paid under duress October 23rd. All questions were starting to be avoided again. October 30 was told gas line was set to be hooked up. November 1 sent paperwork for gas line hook up. Windows delivered and installed November 8, 2018

Received a notice of non-compliance from the county November 10, forwarded to Paul and he said he’d take care of it. Was informed that the gas company was hesitant to install the gas line, was told by the company when I paid to get it installed this year they denied him due to payment issues which Paul never said a word about, Paul suggested we install propane as a go around which was incompatible with our selected appliances. November 15 was explicitly stated we were on the list for gas line installation which was a complete lie as they require payment in full and account set up in advance none of which had been done. November 17 excuses about what is being done, nothing actually done on site. November 18 questioned the front door which wasn’t the door we selected, Paul stated he canceled it and wanted to get a door made; notified that our septic was $3000 over budget as it is not suitable to be refitted. Shane called and asked why this wasn’t included in the August 22 lot servicing payment and why wasn’t it handled then. We told him that it was unacceptable. November 21st Paul said gas installation was a no go and that he was looking for options and we responded with grave concern.

We had received phone calls from Mr. Kozik who had done the lot prep a year ago telling us he still had not been paid, forwarded info to Paul each time. Was told by Mr. Kozik on November 21st that our build has been black balled and that he was telling everyone not to work on our site as they won’t get paid. Told Paul he was ruining our relationships with our neighbours and that was unacceptable especially since we hoped to conduct our business from our home. He missed an arrangement to pay him on the 15.

November 23 Paul sent me info requesting more money for the septic system installation and threatened that we will lose his services and forwarded emails directly from contractor. Told Paul again that we were not paying anything until he can get an account of what we have paid for vs what he is asking us to pay for, saying it feels like we’re are paying twice. November 27 Mr Kozik still calling and not been paid. November 29 still no progress just more excuses about ft Mac.

December 4 Three weeks no one on site. December 7 received a revised cost review showing $22,000+ builder deficit. Responded that this was not the detailed information info we requested and we require what we had paid for including what lot servicing meant. He responded he would work on it and that insulation was starting this week.

December 14 Email stated the domino effect of missing payments is holding us up and the cost review was delayed due to switching accounting companies. This did not go over well and we decided to let things sit as we were too angry to listen to more excuses. Emailed us on December 22 to say he was looking for a new electrician and that no one was on site until the New Year.

On January 2, 2018 I emailed Paul asking him to check our site due to seismic activities in the area, he said no visible damage. On site January 5 we noticed that they were using r20 insulation instead of r40 we requested. January 8 we decided on siding selection still no progress on the house and r20 was still in the wall. Only one wall had any insulation.

January 12 Email with news that crews quit and that he approached M&H to help move us along, spoke to M & H and he knew nothing of this. January 14 email stating new electrician willing to work.

January 19 Email with deal with M&H and he mentions prepaid items but when questioned he didn’t answer what those items are. Arranged to meet Alex on site but he no showed and none of the stated work had been done.

January 24 I sent an email stating how frustrating this is and how unhappy we were. We asked for the details on the Seacan as we feared it would be repossessed with all our possessions in it.

January 30 Still no work done and no response from Paul on information we requested.

February 9 Still no progress and lots of excuses, accounting not provided. February 26 email stated concrete was supposed to be prepared, nothing done no tracks on site.

February 28 I sent an email requesting account information ASAP, Paul responded March 6, saying that it was year-end and again saying he wants to pass us off to M&H Homes.

March 8 I again received a deficiency report and it stated it was still in default for our permit, forwarded it to Paul. He said he forgot and will handle it.

March 9 Email update saying his accounts were a mess and he needed more time to clean them up and he was meeting a Calgary investor to recapitalize again.

March 13 Email saying meeting went well and that there was too much rock crush in the basement and that he was meeting a concrete company.

March 21 Email saying financial details will be in by Friday. Received financial details but they were not detailed and did not match the numbers previously given, when questioned we were told that a new management company was taking over and that I should be dealing with Surge Construction now. Requested contact information for Tim and Ben. No response, excuses March 23-27. Requested again April 2, assured me that he will be in touch ASAP. I requested all documents and copies of the home warranty; received a form that stated the policy in effect until 2018 and was issued to Escape Homes.

April 30 Finally got the purchase information so we could buy the Seacan Paul had leased.

Shane received phone call from Alex looking for to house keys, strongly advised him not to come onto our property again.

June 18, 2018 Our lawyer sent letter to Paul Sirois terminating our contract and requesting he not enter our property. Served June 28, 2018

We tried to get the project completed on our own but we are not builders and are unable to get the home warranty and other details required to finish. We are heartbroken and out a lot of money as a result we decided to sell.

At the end of the day I thought I had done my homework I checked with the better business bureau, I looked up the company online for complaints, I researched the timber block company affiliated with Escape Homes thinking they are a really good company therefore they would work with good people. We met the builder in person, had a good vibe but once money issues started to come up we should have reached out to a lawyer to protect ourselves sooner instead of believing the excuses. Once one deadline was missed we should have acted. I would say, research the company as best as you can, make sure everything including changes are in writing and don’t sign a contract without having a lawyer look it over.

To view the home listing and/or inquire go to this link:

https://www.leadingsells.com/for-sale/E4166204?

The rest of the family: Little Lady, BUD, M.J., Spot, Penny Lane, and youngest Elvis

Dogs

To see Janice’s Photography go to her Facebook page:

https://www.facebook.com/JPSRPHOTO/

Shane is self-employed, you can support his business Boss Dogz Limited by going to his Facebook page:

https://www.facebook.com/bossdogzhotdogz/

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The Funny Thing about Death By Donna Lynne Erickson

To see more and reach Donna Lynne:
https://www.donnalynneerickson.com
www.facingloss.com
https://twitter.com/dlyn56?lang=en
@facingloss
Donna Lynne Erickson Comedy Video
https://vimeo.com/275523281
Purchase The Funny Thing about Death available in Ebook, Paperback and Hardcover
https://books.friesenpress.com/store/title/119734000072337904/Donna-Lynne-Erickson-The-Funny-Thing-about-Death

I recently had the pleasure to meet Donna Lynne at a comedy show; is a delightful lady, funny and insightful.  After I read her book The Funny Thing about death which changed the way I view loss.  I quickly invited her to be a guest blogger because I want share with you what Donna Lynne taught me in her book.

“With The Funny Thing About Death, find an alternative course of action for a society that’s decided an absence of emotion around death’s unavoidability is the best way to deal with it. In its pages, readers—including adult children watching parents recede and die—will find comfort and counsel on how to lean into the discomfort of grief and allow natural mourning to occur.” Book review

Death itself is not funny. What is funny (strange) is the way we, in our busy western society handle losses. Since 2011, a colleague and I present full day seminars to teach people how to work through loss. To explain the content of these seminars and promote the importance of facing loss, together, I felt I needed to write a book for people asking if such a workshop would be a good fit for their workplace, church, or organization. This book was to be a brief look at what we teach and outline my philosophy of bereavement, grief and mourning. Then, it became more personal when my own story leaked in.

To be bereaved is to have something precious torn away. The event of loss.

When we experience loss — whether it is the loss of a loved one through death, the loss of a relationship through divorce or the loss of health and vitality — we are sad. That sorrow is the inside pain of loss also known as grief.

Expressing that sadness (grief) is what we call mourning. This is where it gets messy. Mourning a loss may make others uncomfortable therefore it is often stifled. There are often tears. Feeling of hopelessness. We become distraught trying to find the meaning and purpose of the loss. We may blame others, shake our fist at God or quietly sink into ourselves and cocoon so that our feelings stay private.

The Funny Thing about Death is a small and mighty book to explain not only my personal journey but observing experiences of other people as they wander through their loss event. We are all unique yet we all have something in common—it hurts to be bereaved. Losing pets, losing a job, losing a business or a home are huge life changing moments that mean life will be different and there is no magical way to rewind the event. “If only . . .”

The good news is there is hope. We cannot undo what has been done but we can move through the loss. We are able, if willing to do the work, reconcile the loss into our life. We need help to do that. There are times of utter exhaustion. There can be times of rest by giving permission to mourn in safety with trusted grief helpers. Can we change how we do things? Is there a way to make a cultural shift so that we can safely mourn without being judged, fixed or ignored?

I believe we can. To help others we must first understand our philosophy of bereavement, reconcile the losses we have personally experienced and then learn, listen and be aware of the need to mourn, together.

River City Roof Rescue-Chrispy Workun

I am thrilled to be a part of bringing you this gentlemen’s story of generosity and unconditional kindness.  A company called River City Roofing runs a program called River City Roof Rescue.  Owner Chris (Chrispy Workun) graciously agreed to be a guest blogger to tell you what River City Rescue is and how they help out in the community.

What got me into roofing? I started when I was 21. I was in a punk rock band called The Blame it’s at the time. We all started roofing because you made decent money and you got winters off. We used those winters to tour across Canada and record albums; it was a win win situation.

While the other guys found new careers and moved on I grew to enjoy the work; never looked back. Now 14 years later my business partner Jesse has his own company but we are working on merging the two and we have a couple of roofers that work on our team. It’s a small company with one crew we can guarantee to have at least one owner on site. When we decided to go out on our own we wanted to do so as ethical as we could. So when I pitched the idea of River City Roof Rescue, Jesse was immediately in and River City Roof Rescue was born.

RCRR is a program where we take $2 per bundle of roofing installed which is a bundle of shingles; usually 20 shingles per package/bundle and put it aside. When someone needs a repair but can’t afford it, we do it for free, using what we have set aside for materials. We will even redo a full roof if we have too if the money is there. So the more business we get, the more people we can help. All this is done in a non-exploitive way. We will not use their situation for our own gain. We understand that money is tight sometimes having been there ourselves. We want to help use our skills to help take stress off the table for as many people as we can.

I do more than run River City Roof Rescue.  When there is a need I try to help when I can.  When the Aviary was broken into I donated a keg to their fundraiser show so they could keep 100% of the money from the beer they sold

I am what we in the biz call a sloped roofer, as opposed to a flat roofer. There’s an age old argument between the two; one is the superior roofer. I never got caught up in that because we’re all roofers, we have one job and that’s to keep the weather out. Which I think is an extremely important job and I take that very seriously. So as a sloped roofer my job is very simple; take off the old shingles and put on the new ones. There are a few other steps involved but that’s basically all there is to it. It’s an easy job to learn but a hard job to master. It’s an exterior finishing job so it has to look as good as it functions. That means every cut has to be perfect, every nail placed correctly, every shingle lined up perfectly. Which seems easy enough but say you are doing a 50 bundle roof, that’s 1000 shingles, at least 4000 nails and 100 or so cuts. It gets pretty monotonous and tedious and it takes years of practice to be able to do all that as perfect as you can without zoning right out and completely messing it up.

So you need to get your roof done and you want to hire a contractor. There’s a ton that I can say on this but I don’t want this to act as a giant advertisement for me so I’ll keep it fairly generalized. First off, make sure to get a couple quotes. Different companies have different pricing so it’s a good idea to weigh your options. That being said remember that in many cases you get what you pay for so if you get a quote that is so much lower than the others, there’s probably a reason for that. Referrals are your best friend and ours as well. If you know someone that got a new roof and was happy with the work, the clean-up and the price that’s a great place to start. If you get a salesperson that makes you feel uncomfortable or tries to pressure you into a contract just walk away. There are a lot of greasy salesmen out there and you don’t have to put up with their crap. Talk to them, ask as many questions as you want and only proceed with hiring them once you feel comfortable. How much does your house cost to roof? This depends on several factors: Pitch of the roof. The steeper the roof, the more it costs. The average roof is a 4/12 pitch. That means that if you measure 12 inches horizontally from the peak it drops 4 inches. •style of the roof The more cut up and complicated the roof, the higher the cost. •access to your house If you a driveway that we can pull our trailer into as well as the loading truck for materials, that is our best case scenario. If there are power lines, trees, no driveway or a fenced yard. That means that we will have to carry the material up a ladder to the roof as well as drop all the garbage onto a tarp and walk it to the trailer and that will affect the cost as well. Then there’s the clean-up…the dreaded clean up that so many people hate to do. If you are asking friends for a referral make sure to ask how well the company did their clean up. It’s a simple concept; you make a mess, you clean it up. Something we’re all taught from childhood. We take a lot of time for our clean up, we get labourers to go on the ground and clean up as well as they can while we finish up the last touches on your roof. Once we are done we all go over the whole yard at least two more times to make sure we get every last scrap and nail. We even check your neighbour’s yards because plastics can blow away with wind and nails have a tendency to fall pretty far from the roof. The last thing that should happen is you getting a nail in the foot or knee while doing yard work or your kids playing outside. If you notice a company didn’t do this major part of the job well enough, make them come back and do it properly. The clean-up should match the roof…flawless and that’s all there is to it.

I am also a musician; my first band called the Blame It’s started in 1997 when I was 12, we are still together but don’t do much these days due to careers and family priorities. I started playing drums when I was 12 with Blame It’s then changed over to guitar about 12 years ago with them. I’m back playing drums in Screaming Targets and also play guitar in a band called Golden Years with my wife Lorette we are currently working on songs and not playing live.  We have recording equipment so we write and record at home. The record from my band Screaming Targets, Carbon Copies.  Carbon Screaming Targets was taken from a song called Screaming Target from the band Big Youth; it’s a cool tune

Everyone always asked about my name; the story behind my name goes back to when I was 15 years old.  My first name is Chris and there were three Chris’s in our group of friends so we all got nicknames. I got random Chrispy and it stuck; all my teachers, friends and family even my parents called me Chrispy.

Chrispy can be reached at the following social media links

River City Roofing https://www.facebook.com/rivercityroofingedmonton/

The Blame It’s

https://theblameits.bandcamp.com/?fbclid=IwAR3XR26RcK0R4e_v3iElEzUUzqtp1W86nMM5zXKsKMM4-uWmJoy0DBVSKL4

Screaming Targets latest musical Release

https://m.sledisland.com/listen?id=2918&random=1

If you would like to see what people are saying about a specific company you can go here:

 

Homestars https://homestars.com

 

River City Roof Rescue in the news

https://globalnews.ca/news/5261683/edmonton-man-donates-roofing-skills-to-homeowners-in-need/?utm_source=GlobalEdmonton&utm_medium=Facebook&fbclid=IwAR1A8mlUNw-N32sEFIeIvQWTKRoUKIWWKnDx542hrfsAh-9LauZfjiWTQVM

 

Jay Ross “My Story”

I first heard about Jay Ross from a post on Facebook; I knew immediately that I had to reach out to him; in order to give him the opportunity to tell his story.  Jason Deserve to shine, he reinforces my belief that everyone has a purpose in life.  I hope you will take something positive away from this story, enjoy.

Well it isn’t always easy to write about oneself but here goes.  My name is Jason Crawford aka “Jay Ross”, my stage name.  I was born with a genetic eye disease called Retinitis Pigmentosa (https://nei.nih.gov/health/pigmentosa/pigmentosa_facts).  As a child up to my early twenties I never really felt the effect of my eye disease, I played basketball, got my driver’s license and did all of the visually privileged population enjoys.  As the years progressed my eye disease began to worsen and so did my quality of life.

You really don’t realize what you have until it’s gone.  We as a human race truly take our health for granted.  In my early twenties after turning in my license I really began to notice my eye disease kick in.  This really hit me emotionally and with that increased the quickness of the disease because I believe stress is truly the catalyst of disease and ailments.  Independence was and is everything to me so I had to adjust my lifestyle and learn to ask for help which has been and is to this day a big issue for me; I often felt like I was burdening people.  This along with my foolish pride was not a good combination for success in my early years.

No longer driving and no longer playing basketball at the level I wanted I had to figure out how to accept my new label of being Legally Blind, Visually Impaired and Disabled.  These terms were really hard to swallow and I tried to do everything in my power to not let them take over my life but the one thing I should have done was to accept them.  I had to train myself, adapt and manage my employment/career options constantly try to figure out what and where I could and would fit in best.

This is when music found me on a more full-time basis; I was always into music and around it in my late teens and early twenties as a Hip Hop performing artist for a well-known local performing group called Noel O and the O Crew and as my own independent artist under the name Baby J.  I was able to open up for many well-known music groups such as Fresh Prince, Busta Rhymes, Naughty By Nature, Phife Dawg, The Game, Charlie Tuna, Pharcyde, Swollen Members and many more.

When I was declared legally blind at 21, my music took over.  I also found another career that I would continue to pursue and love until this day and that is Youth Work.  In my late twenties and early thirties I ran and managed group homes for under privileged youth and worked as a youth development worker.  Yes at times these jobs had their challenges but what I noticed is that the youth were very empathetic and surprisingly helpful when it came to my disability.  Although this was a disability on paper I began to learn that a lot of benefits come with losing one sense; others senses heighten.  I am able to remember things much better because I do not have a choice and I am a very good listener and found that my awareness to my surroundings and environment were really increased.  I say this in a jokingly manner but my visually privileged coworkers and friends noticed this also and were quick to praise and remind me of these heightened abilities.

Yes my eye sight is slipping away but I cannot focus on that, I need to focus on the positives that actually came with that and I started embracing them and my new-found life style.  To this day I am still very independent but I have learnt to ask for help it I do need it (Still working on this by the way, lol).  I am at times very stubborn but I blame my ancestry for that, I am a 9th generation Canadian that comes from a well-documented and rich ancestry.  My mother’s side of the family is Black Loyalist and my Father’s side escaped slavery and settled in Halifax from the Underground Railroad.

I was born in Halifax Nova Scotia and I am overly proud of my ancestors’ accomplishments and my cultural history.  Today I am living life with a greater acceptance and understanding of my eye disease.  I am the facilitator of a 6 week urban music program for Youth called Rap 4 Reason, I am one of the founders/partners/CEO of a Calgary based independent record label called Infinite Elements which I am able to work with upcoming/seasoned artists and I am still performing/producing/composing my own music.  I really do not limit myself and my ambitions.  The only one that can limit me is me and I know that and remind myself of that when times get tough.  Disability is a humbling experience but not a limiting one in my life.  I currently have a lot of music on-line. I hope my story touches the heart or life of someone else that has a disability and is possibly going through the early stages of acceptance and emotional difficulties.  Hold your head up and always remember that you can make your life whatever you choose it to be, do not let anyone tell you otherwise.

You can reach Jay Ross on the following social media platforms:

Label website: www.infiniteelements.ca

Infinite Elements Facebook: https://www.facebook.com/infiniteelements

Jay Ross Facebook: https://facebook.com/jay.rosscrawford

Jay Ross Instagram: https://www.instagram.com/jayrosscrawford

Tha Fax (Jay Ross music group): www.thafaxmusic.com

You can Find Jay Ross recordings for purchase at the links below:

Jay Ross vs Teekay EP (Purchase): https://www.beatport.com/release/jay-ross-vs-teekay-str8-6-shoota/2448882

Jay Ross “No Lines EP” (Purchase):

https://www.beatport.com/relese/no-lines/2492605

Tha Fax (Purchase):

https://www.beatport.com/re;ease/tha-fax-twisted-mirrors/2225973

 

My Greatest Teacher

Corrie Burge is a local comedian who was diagnosed with Multiple Sclerosis at the young age of 17.  As a way to deal with the issues associated with an unpredictable illness Corrie has written an ebook Cures are for Pussies available on Amazon and Smashwords.

Amazon: https://www.amazon.ca/s?k=cures+are+for+pussies&ref=nb_sb_noss

Smashwords: https://www.smashwords.com/books/view/403494

You can also follow her journey on Facebook: A Comedian’s Adventures with Multiple Sclerosis https://www.facebook.com/curesarefor/

 It is my pleasure to bring Corrie Burge’s story to you in her own words. 

I was seventeen the year I graduated from high school, moved out on my own, and found out I had Multiple Sclerosis. After years of competitive sports and weight lifting, I contemplated my own weakness for the first time. I was frightened and bemused, arriving at my destinations but seldom remembering the road. At seventeen, I wasn’t wise enough to believe that MS could become my greatest teacher.

I awoke one morning lacking vision in my left eye, and as much as I knew about MS, it might have been an eye disease. What I learned to be Optic Neuritis went away in a few weeks, but within a month I had a new, more serious symptom. My diagnosis changed from probable to definite when numbness spread from my feet to my hips.

After several months, many tears, and a round of steroids, the numbness vanished as did the fear and depression, leaving me feeling invincible again. I didn’t pause long enough to learn much about MS, quickly shifting into a prolonged state of avoidance and denial. It was almost eight years before my family was able to convince me to see another neurologist. Until then I rarely thought about MS and when I did, I reasoned that my diagnosis was a mistake. Even when a new MRI test showed lesions indicative of MS, my well-developed pattern of denunciation persisted for another two years.

A decade after my diagnosis, a relapse forced me along the path of acceptance. At the time, I was working, taking night classes and adhering to a rigorous fitness routine. I was too busy to appreciate what I had and unable to enjoy the journey, always worrying about what was done, and what was next. Despite self-made distractions, I was soon unable to deny the symptoms I began to have.

My first relapse in ten years began one night on my way home from a long day at work. I felt movement when there wasn’t any and this time it was unremitting. The next day it was confirmed as vertigo, and therefore an attack of MS. As if to validate the point, I began to have a host of other symptoms common to MS, each as unpredictable as the last.

At first, I focused on how much I’d lost and how much I might have to give up. I was devastated, feeling the full weight of the pain I had been suppressing. Searching for understanding, I began to write in a journal and it wasn’t long before a simple recount of symptoms transformed into a rich exploration of thoughts and feelings. In little time, writing became my haven, my place to be uninhibited, my place to rant and my place to recall what I could have done better. With a renewed sense of peace, I began to accept my symptoms, and my MS.

When MS was no longer an adversary, I became open to its lessons. I’ve learned the importance of living in the moment, knowing that happiness can most often be CHOSEN rather than merely found. I’ve discovered that self-esteem is not necessarily preceded by vocational, educational, or physical accomplishment. Most importantly, I’ve learned to embrace difficulty and take advantage of the tremendous opportunities afforded by simplicity and acceptance.

Finding the Power in Pain-A Personal Journey of Acute Chronic Pain: Endometriosis… Brandi CK LaPerle

In keeping with my belief that we all have a story to tell, Brandi CK LaPerle has graciously agreed to provide Mirella Muses readers the following excerpt from her  up-coming book The Advocate available for pre-order by the end of 2019.

Part I.

My story is no different than what hundreds of millions of women live each day. One which spans over twenty years going from doctor to doctor and gynecologist to gynecologist being told my pain is all in my head, to “just take an Advil”, some women can’t handle a little pain, subjected to antidepressants that messed with my brain chemistry, bounced around from one hormone manipulating drug after another (often changed, but remaining within the same class despite severe failure every time expecting different results that never came), called lazy, weak, an attention-seeker, flagged as a drug-seeker. The latter which undermined my credibility in describing my pain to medical professionals; a great contribution to delayed diagnosis allowing for progression of disease, and complications science has not yet advanced to address. I could go on for a very long time describing in graphic details the gross miscarriage of justice in my healthcare before I gained a diagnosis of endometriosis at the age of 31. This is my Fem Truth, but it is not uncommon, nor unique.

If you are reading this and find yourself relating, it’s okay to cry. If you have a loved one afflicted with chronic acute pain and you find the third part testimony offers a painfully real insight into your loved one’s suffering you have treated with skepticism, it’s okay to cry. If you’re an employee that is an otherwise excellent employee and fired due to absence related to chronic pain complaints; it’s okay to cry.

It means you’re a good human being with compassion in your heart, and that’s not  a negative quality to have.

My testimony isn’t intended to make you cry, or feel worse. It is my goal to offer you truth in its rawest form; to share with you that you’re not alone no matter how isolated and dismissed you are. I’ve found power in my pain.

If it is possible that I may help bring justice to the validation you’re denied, or to help ease your helplessness whether a patient, caretaker, lover, friend, co-worker, sister, mother, or employer then I hope you may take something away from this and share it with one person. If “each one teaches one”, as endometriosis care pioneer, Nancy Peterson has taught me, then we can build a rope to a brighter future.

Let us break the silence on the taboos of women’s health, break the stigmas of mental health, and better understand the horrifying effects of systemic gas lighting by the medical establishment and chronic acute pain: it can be deadly.

Before I begin with my own story, I’d first like to share the toll-free phone number of emergency mental health for Alberta: 1-877-303-2642. If you’re not from Alberta, a quick Google search should make valuable information available that can save your life. Write it down somewhere you can easily find if, and when, you may begin to feel like you may grow near losing your battle. Suicide and mental health are serious implications of chronic acute pain, and you don’t have to fight this alone. There is tremendous power in pain and there are many ardent experts and advocates in the world fighting for you even though they may never know your name, or shake your hand. The invisible rope is there even though you can’t see it. It’s there.

We will NOT cease fighting for justice in your suffering!

This is not to suggest your suffering is in your head, or that I have any belief you can think yourself better with positive affirmations (isn’t that just the most annoying thing in the world when you’re suffering?).

I’m not going to suggest you try cinnamon, or talk about vaginal steams here; if that’s your thing then that’s okay although gynecologists strongly advise against the latter.

In my pursuit to help bring justice to those suffering in silence, I would like to share information obtained from the first endometriosis patient conference in Alberta I co-produced, and from expert guests that have presented at the in-person support groups (for ALL women) I’ve organized and presented… by the numbers because that’s what counts in our pursuit of justice! While our stories may be devastating to hear, we must present factual information peer reviewed and established by the medical authority.

By the numbers:

  • Severe chronic pain is a major factor in up to 70% of suicides Suicide in the Medical Patient. Intl J. Psych in Med. 1987:17:3-22.;
  • Approximately 1 million women live with endometriosis Journal of Obstetrics and Gynecology Canada
  • Delayed diagnosis and failed treatment protocols cost Canadian taxpayers in excess of $1.8 billion per year Journal of Obstetrics and Gynecology Canada
  • The estimated mean annual societal cost per patient in 2009 was an estimated $5200 (95% CL $3700 – $7100) Journal of Obstetrics and Gynecology Canada
  • Global Women’s Health determines women miss up to 572 hours a year in work productivity American College of Obstetricians and Gynecology (ACOG);

 Did you know that the 2017 Lupron I Worldwide EndoMarch Alberta’s survey of 3,040 Canadian women found:

  –        75% of patient respondents felt the side-effects of Lupron were not fully disclosed to them;

  • Leuprolide Acetate is a drug developed to treat terminal prostate cancer Prostate Cancer Canada

–         41.6% of patient respondents said they were refused treatment at their first post-diagnosis appointment unless they agreed to take Lupron;

–         45.83% of patient respondents said other treatment options were not discussed with them;

–         91.3% of patient respondents say they experienced severe side-effects worse than their endometriosis itself;

–         83.3% say they felt pressured to take Lupron with fear they would be dropped as a patient if they denied this option

Many comments in the feedback reflect these comments from Worldwide Endomarch  2017 Lupron II survey:

I became suicidal and was told it was normal and would pass. I tried to kill myself, but I wasn’t successful”

 “I was told I’m choosing to be in pain if I don’t agree to take Lupron”

 “I felt worse on Lupron and my gynaecologist told me to come back when I’m willing to get better”

 These comments are damning, but how reliable can they be?

The frequency of accounts corroborating similar experiences of gas lighting by the medical establishment cannot be ignored. Particularly in this moment of #metoo and ongoing debate in which many unfortunately continue to pursue the oppression of basic human rights we must passionately seek to protect with every fiber of our human being.

We have covered a lot of information here and yet, I have not begun with my own story. As I mentioned above, my story is no different than hundreds of millions of others. The average time it takes for women with endometriosis to obtain diagnosis is 7-11 years due to deficiencies in diagnostic technology and the systemic dismissal of women’s pain, so if you know 10 human women, you know at least one that suffers in silence while desperately seeking to hide their suffering so as not to cause discomfort for others.

 Part II.

To say early teen years were a confusing time would be more than a mild understatement. It always seemed as though my friends were stronger and more capable at being young women than I was. My peers never seemed to be able to relate to the pain and symptoms I refused to believe were just in my head and my self-esteem would have been lost forever if not for my love of the sport of baton twirling.

The mornings were always met with discourse in the household with my seeming inability to physically pull myself out of bed which could only be understood as typical broody teenage behaviour. An expert deep sleep talker, it was frustrating to anyone with the courage to wake me, as it often involved full coherent conversations with my insistence I was listening and getting up, but no recollection of such promises upon opening my eyes to fight through another day. I could sleep anywhere at any time the worst days in the month that could last anywhere from 3-10 days.

If the mood swings weren’t enough to make me feel like a prisoner in my own body, the insomnia from crying in agony only served to exacerbate the physical anguish of fierce lesions and scar tissue spider-webbed encasing my abdominal organs nobody could see. It was excruciating to use tampon protection, and even more so to push beyond my body’s physical limitations to achieve my athletic dreams.

In many ways I did achieve my athletic dreams thanks to the sacrifice, blood, sweat, and support of my parents. Dad worked extremely hard to send me to elite training camps and competitions across Canada while Mom worked fundraisers and lived on the road with me making sure I always had fresh nutritious food in me, plenty of hydration, and strict bedtimes, so I could be the best I could possibly be! Mom always encouraged me to believe I was beautiful and worthy, but I don’t know how it must have felt for her, as a mother, to see my self-esteem and confidence wane. I don’t know that I could watch my pride and joy fade before my eyes, but mom never gave up on me. As she brushed my hair to pull it into her famously tight curled ponytails, the teenage hormonal tears fell from my eyes as I abused myself with ugly self-loathing for my “hideous” face, and body. Each morning was a battle to overcome frustration with the hyper-focused perception of my physical appearance vs. how it all felt with the very real limitations of my sore exhausted body that never seemed to want to rise to the occasion of my will.

You may be thinking “typical teenage behaviour”, but there is typical teenage behaviour and then there’s taking your daughter to the doctor to find out what’s wrong with your daughter kinds of teenage behaviour. Calling psychiatrists desperately seeking answers to the self-loathing and melodrama with numerous calls and visits to the schools to discuss absences as even teachers refused to believe there could be a medical explanation.

In short, I was a very troubled teenager. I didn’t do drugs, I wasn’t having premarital sex, and the police never had to call my parents, but I was a problem nobody knew how to solve.

I was “hypersensitive”, “confused” and an “over thinker” because nobody could see the actual damage growing inside of me.

Most of the skills and discipline that makes drastic lifestyle adaptations and changes so easy for me as an adult are derived from my years of training and development in the sport of baton twirling. As troubled as I was in my teen years, they were also a very rewarding part of my life with strong adult role models like my baton twirling coach that loved me unconditionally, as I loved her. She attended every training camp and every competition with a video camera in hand save for one time when she had an unexpected family tragedy. I was around the age of 14 at the time and had never been to a competition without Pat Stevens’ pre-competition mental preparation coaching! What was I to do? I never realized the magnitude of how involved and dedicated my coach was to my success until the day I was faced with performing in her absence.

In the change rooms, my team and I were surprised before we were set to take the floor, with an audio cassette tape recording our coach made for us in the days leading up to our travel with the instructions and encouragement of the day she was unable to provide in person. We all felt her loving presence as she shared words for some of us as individuals, the different teams of varying sizes and ages, and our club as a whole. Being the team captain for the senior level team, Pat trained me to be prepared to take the teams and help them train before our performances, but I didn’t have to.

Before the morning procession, Pat arranged for Wendy Cruikshank from Lacombe, Alberta to collect the athletes from our St. Albert club for run through of our routines in the practice gym with Wendy’s Lacombe athletes whom welcomed us with enthusiasm.

Here are some wise lessons Pat taught me that I apply each day in my chronic pain journey living with endometriosis:

You will always drop the baton and that’s okay… sort of. When you drop the baton, go back and do it 100 times in a row without dropping before moving onto the next thing.

Sometimes you need to take a break and come back to it to get it done, and that’s okay.

Start with the most difficult tricks because you begin with more energy;

People in life appreciate if we don’t finish everything expected of us if we put an honest effort into the pursuit of completing the most difficult tasks;

Keep going when you forget the steps and make it work until you get back to the part you do know. Then train yourself to do it start to finish without forgetting steps. It’s a process;

When the music stops, keep going without missing a beat as if the music is still playing;

Lose with the grace of a winner and win with the humility of a loss;

Even if you lose every single time, you are not a loser;

Your medal is no less gold if it took you more losses than your peers to achieve a win;

Fight like hell through the pain whether mental and emotional for YOURSELF. Don’t do it for gold medals or others. Do it for yourself and allow yourself the opportunity to see what you’re capable of;

Then there was the humiliating lesson at the Canadian National Championships when my duet partner and I were contenders to win our division by a landslide for an event, but we performed so poorly that little children out-scored us:

Don’t run and hide from facing the difficult the discussions when you embarrass yourself with failure. 

Fortunately, the sisterhood of my club and fellow competitors across Canada gave me a strong positive sense of community during those troubled formative years. My biggest competition was also my best friend.

My hero was an older senior athlete trained by Pat privately that was always approachable and willing to talk to me. We exchanged cards and gifts on competition days, and sat together in the bleachers. Jamie even gifted me with a picture of my baton twirling crush Stephen (?) from Ontario at the first national championships I was able to compete.

Our house was an athlete favourite for billeting because mom would always take kids that didn’t want to get separated and always had an extra sleeping bag with pillow so the little ones could stay where their seniors were.

My hero, Jaime, even joined my team in my final years of the sport even though she was very far advanced compared to me, which set the example of how approachable and accessible I am for others today.

I didn’t always see Dad at the competitions, but he would work his hands to the bone and still drop in to watch me compete locally on occasion, even if sitting in a gymnasium with hundreds of little girls tossing batons in the air under cartwheels wasn’t his dream of how to spend precious breaks from work.

By the time I reached into my early twenties I knew something wasn’t right, as I know the hand in front of my face; sleeping in the bathtub three days out of the month because the dysmenorrhea and menorrhagia (hemorrhage bleeding and pain) were so great that adult diapers were insufficient menstrual protection. The pain became more and more regular no matter where I was in my menstrual cycle. It is hard to feel sexy in your early twenties when you must wear adult diapers and take so much Advil your stomach threatens to relocate without notice, but even more humiliating was the mental battle of seeking out medical help only to be gas lit and told there was absolutely nothing medically wrong with me.

Over the course of my twenties, I had the experience of being gas lit by very inquisitive medical professionals across the United States with great curiosity for our Canadian health care system. Is it better? Is it worse? Is it true that Canadians don’t have copays or bills in the mail? Was it less advanced than the USA? (Not really in my eyes). I can only say that Canada has disturbingly long wait times, but the United States is very efficient at sentencing the most vulnerable citizens into three generations of poverty very quickly. I did, however, fall in love with extreme outdoor adventure sports in my American travel. I do not encourage first-time white water rafters to challenge Class V+ rapids in West Virginia, as learned from a “friend”. Yes, it was a friend that wasn’t me (except it was totally me).

In the Czech Republic, the Doctor treated “lady pain” very seriously. He could not offer answers or explanations, but as soon as I began to talk, he told me that some ladies have problems that are very painful and it’s important to treat the pain even if he cannot help more. I recall lighting cigarette after cigarette in the waiting room (in the mid-2000’s I was smoking cigarettes in a doctor’s office), and I walked out with a packet of red pills for my “lady pain”.

Within 20 minutes of taking this mystery medication (because I didn’t know how to read pharmaceutical inserts in Czech), I spent the rest of the day wandering the streets of Prague eating sweet cinnamon pastries at Prazsky Hrad (Prague Castle) without a pain in the world. On the steps to Wenceslaus I, Duke of Bohemia’s famed St. Vitas Cathedral, I became engaged for the first time which was an occasion planned to take place in the tower, but it was closed for renovations on that cold December day. Instead we stood where Kings proposed to their Queens, and the bodies of rulers that fell out of favour would land after being flung from the castle windows which actually serves as a rather accurate representation of that particular relationship.

Unfortunately, I returned to the United States and never did find out what those red pills were, and the fairy-tale dream of a “normal life” came to a bittersweet ending. For the first time in my life the unknown had been an attainable indulgence. ***Disclaimer: Do NOT take mysterious red pills even from Doctors in foreign countries*** I’m still judging 25 year old me.

In November 2013, I found my way to a gynecologist that accepted my case and gained a pathologically confirmed diagnosis of endometriosis at the age of 31. Having a diagnosis was the greatest validation I had ever felt, but little did I know that the gas lighting and cruelty would not end there.

Part III.

When the standards of care, which are so deficient, are created in the interest of institutional or political benefit and NOT the patient, we will inevitably continue to have poor outcomes…research deficits, financial toxicity, and failed care. The system isn’t broken – they built it that way. If we want to overturn the system that continues to gaslight us, we must do it ourselves. – Heather Guidonia, Surgical Program Director, the Center for Endometriosis Care

Recently, in February 2019, I agreed to see a gynecologist at the Hys Center in Edmonton, Canada, while I wait for my third surgery to take place in Calgary for complex rectovaginal extra pelvic endometriosis.

One of my Internist specialists that help’s with my rectal endometriosis wanted me to at least meet a local urogynecologist due to chronic debilitating symptoms related to my bladder endometriosis. The suggestion was to see if there’s a way we can do my surgery locally (which would be ideal). I’ve had internal ultrasound, blood work, cystoscopy, sigmoidoscopy, and to nobody’s surprise, the insides of my organs all look healthy and normal; this despite confirmation of disease growing and bleeding on the outsides.

I’ve already been rejected by every gastroenterologist and general surgeon in my local city (needed for some aspects of my surgery) citing that they didn’t feel they have the appropriate expertise to help me. If there’s nobody willing to help with crucial work that needs to be done for my long-term outcome quality of life, I’m willing to travel to a location that has plenty of experience with complex cases such as my own; my quality of life is at stake and the cheapest protocols that save Alberta Health money are well established by the scientific and pioneers of endometriosis care in my network to have the lowest long-term outcomes.

More than one surgeon has canceled on me day before surgery citing they don’t have the expertise in the areas required to be able to help with my case (fair enough). I appreciate their honesty, as in my experience, it is a rare occasion a medical professional makes such an admission.

Hesitant to try local isn’t a matter of attempting a queue jump, or unfounded skepticism. I tried that first in 2013, and it caused irreparable damage that continues to impair my quality of life today. My second surgery later in 2014 with an endometriosis trained professional addressed and found disease not previously detected that corroborated my past descriptions of symptoms and pain. More validation, but wouldn’t you know, I’m still not trusted in my description of symptoms and crippling endometriosis. There are still professionals that will look at my file, meet with me, and move to attempt to convince me my symptoms and experiences aren’t possible. Some have suggested they don’t agree with the pathology on record that confirmed my disease (twice).

I undertook a multidisciplinary post-surgical approach to management that I learned from an endometriosis conference I co-produced in Alberta, and the various professionals from different backgrounds that present at the support groups I organize and host: reiki, acupuncture, pelvic floor physiotherapy, mindfulness, meditation, learning to understand organic pain and the effects of long term untreated chronic acute pain on the brain, consulting with a dietitian, mental health counseling. Most of which will be what I will learn about at the chronic pain clinic I’ve been waiting three years to attend. Waiting… three years… for the care I’ve already implemented into my care. I wait. A worthy wait in my eyes, as there will be more support and help in my healing journey even if I am told to expect more of the same with handouts; worksheets, resources, and information I already have in my possession and have been sharing with the patient community since 2013.

Back to my recent gynaecology appointment where I ended up seeing a lady that was covering for the gynecologist I was supposed to see. I was excited to meet this new gynecologist because past professionals within the practice weren’t trained in Endo, but very supportive and willing to work with professionals with many additional years of training for endometriosis beyond general gynaecology (even though their additional training is not yet recognized as a subspecialty) for best possible patient outcomes. I had no reason to believe I would encounter the toxic treatment so many patients share amongst themselves and write to their government representatives about since the global awareness movement gained mainstream attention since my public feud with celebrity doctor Drew Pinsky (thanks for continuing to play the role as if we haven’t moved on to keep endometriosis in the spotlight, Dr. Drew!) in 2014. I’m ever grateful for the Hollywood spin on our supposed feud and the episode on his Dr. Drew Live show where he agreed to have Dr. Tamer Seckin (Endometriosis Foundation of America co-founder). I don’t make a point to attack doctors publicly. Dr. Drew Pinsky is in the business of sensationalist entertainment. He helped blow endometriosis up on Good Morning America, CNN, Jezebel, TMZ, and media from all over the world.

Prepared with my notebook of questions developed with Canadian endometriosis trained specialists, I couldn’t wait to learn about the possibilities of keeping my care in Edmonton. The lady gynecologist had a gentle voice and calm composure that immediately made me feel at ease… …until she opened her mouth.

What I’m about to share is not in the spirit of damnation for the lady gynecologist. My hope is that my testament will serve to inspire more than conversation and bring urgency to changes in policy and guidelines related to women’s health unrelated to child bearing or cancer. Women’s health unrelated to cancer or child bearing needs to be recognized in Canada, as has been done in other parts of the world (I’m looking at you Endo UK).

Gynaecologists and doctors don’t know what they don’t know and it is my absolute belief that even the harshest gas lighting is done, not in bad spirit, but rather professionals are trained to believe they are acting within the highest integrity.

That doesn’t make it right, or okay.

A one hour consult was actually an hour of my being excoriated with some of the worst comments I’ve heard from a gynecologist in Canada (I’ve heard literally thousands from my own experiences and feedback from patient groups, and my Endometriosis patient surveys). I’ve traveled across Canada and back meeting with patients, their families, medical and government authorities. My story is not unique or uncommon by any measure. It is imperative we must put an end to the epidemic of gas lighting women in the medical office setting.

It’s 2019 in Canada and we need to do better NOW!

Since late 2018, I’ve navigated through the bullying directly and indirectly from a professional I took a chance with and determined too many red flags to move forward with. I didn’t complain. I just chose a different path after very careful considerations. I’d only heard about this professional in the patient support groups I’ve administrated or founded. The local leader in complex women’s health has had the lowest patient feedback and reports of intimidation greater than any other region in Canada I’ve collected data from; it is apparent that there has been some offense taken for my choice to not go through with surgery with the specialist (I will not name out of respect). Every so often when I meet a new professional after long referral and acceptance wait, there is a hostile greeting followed by a lecture on how unacceptable it is for me to think I know better for my health than the professional I respectfully declined.

Now, I won’t say I don’t believe patients when they share their personal experiences, because I do believe them. I won’t say that it isn’t important to respect the training and expertise of medical professionals. I hold their dedication and education in the highest regard.

In my position I do try to mind that there are always three sides to every story. Talk of medical professionals “bullying” patients for not wanting to continue care for any reason isn’t something I take lightly: Doctors are humans that must balance patient care while also undertaking to uphold a code of ethics, SOGC standards, and budget conscious health authority guidelines. Just the same, one of my best Endo family friends recently tried to take her life after years of gas lighting when a hysterectomy didn’t clear up her symptoms with this same specialist I respectfully declined. Some women DO go home and take their lives.

Far too many go home and take their lives after being gas lit by the medical professionals they turn to for help. Perhaps some may have other issues going on with their health, but that cannot explain away all 87 deaths in my patient community by Jan-March 2018 alone.

Now, the first point professionals seem to make is that endometriosis patients are in need of psychiatric care when traditional treatment protocols fail. It is believed that the treatments don’t fail, but rather the patients fail. I will not deny the necessity to address the mental and emotional distress that manifest from years of medical neglect and gas lighting while coping with acute chronic pain and debilitating daily symptoms. The idea that the patients are what fail when their symptoms don’t ameliorate after treatments fail needs to be updated to reflect modern social and medical science. This being said, it has been in my experience interviewing professionals, that psychologists and psychiatrists may take the long-term effects of prolonged untreated chronic pain the most seriously.

There are many debilitating co-morbid conditions and post-surgical complications that patients may mistake for active endometriosis, but multidisciplinary care centres in Canada aren’t designed to help each patient individually for greater outcomes. It’s more of a high volume system designed to help as many women as possible, but on penny pinching budgets that can’t afford, and/or choose not to modernize. It is imperative we have dedicated care centres for women UNRELATED to childbearing or cancer. Ideally, professionals would afford patients the right to informed consent and develop better communication skills to put an end to the gas lighting.

When there is such high negative feedback and corroborating accounts of gas lighting and intimidation among the patient population, I always investigate to determine areas of opportunity in my advocacy efforts. There is an abyss in the communications between doctors and patients too complex to lay blame on one or the other. It is my own belief the problem lies in the medical system and policy.

As I opened my notebook, the storm came down with the force of a hurricane. How dare I doctor shop! I’d already been seen by the best trained professional in Canada (not by any standard of patient outcomes or feedback). An hour consultation was littered with such comments as, “you’re choosing not to take hormone therapy, so it’s a choice to be sick”.

My Net-care profile shows a history of my undergoing every possible hormone therapy available for endometriosis and the severity of effects with each. Not only did these hormone therapies fail, but all created greater problems for me. Progesterone causes my rectal endometriosis to worsen and become more active. Fourth degree prolapsed piles form overnight where a network of active vicious endometriosis lesions rage unresponsive to non-invasive medical interventions. Upon ending the progesterone and progestin hormone manipulation drugs, the complications resolve to a more tolerable (still debilitating) level. Inflammation so great creating infection after infection after infection despite every lifestyle, nutritional, and daily care effort led my medical providers to terminate the use of these hormone classes in my care.

I fainted from the pain and went into shock when the internal specialist tried to gently check my rectal endometriosis by digital exam. This is one small example of a much larger complex case with a variety of symptoms involving numerous organs. Although progesterone and progestin hormone therapies have had this affect, I continued to try others in hope that one may be the answer to even a small improvement in my quality of life. The progesterone therapies also affect my mental health greatly. My psychiatrist does not want me on these classes of hormone manipulating drugs and states so clearly in her recommendations.

Low dose estrogen only serves to pour gasoline on a fire.

Lupron didn’t slow, stop, or even help to mask symptoms. Years after coming off of Lupron without, and then with, add back therapy, I still deal with the hot flashes, brain fog, and increase in active lesion activity.

Going back to the lady gynecologist lecture, her response to my description of experience with different classes of hormone manipulating drugs was to assert, “what you need is a psychiatrist because these medications can’t possibly cause any of these issues” (the drug maker and gynaecologists with several years additional training for treatment based on modern concepts of endometriosis care unanimously disagree).

Instead of whipping out my well prepared documents of Dr. John Dulemba’s work on endometriosis cases where hormone therapies fail, I sat in silence taking it in trying to separate my emotions from the situation so not to undermine my credibility with the lady gynecologist as a patient advocate for INFORMED consent. I felt like a child being scolded for eating a cookie I didn’t actually eat and crying would only make it worse. All I could do is sit and take it counting the seconds to when I would be dismissed because who knows what will be entered on Net-care if I cut the appointment short.

By the time the lady gynecologist began asserting that there’s no such thing as endometriosis subspecialty (apparently they’re just butchers), she lost any chance of gaining agreement from me that ANY general gynaecologist is capable of treating my complex case; nobody is trained or experienced than any other gynecologist, she snapped. What I need is psychiatric care and if I won’t take more hormones that have already caused me harm, she would put in another referral for the pain clinic I’m already accepted to and waiting for, and then she would be done with me. No gynaecologist would, or could do more she scolded.

I don’t want to be helped. (Ouch!)

Lady gynecologist saw I had a referral to a doctor in Ottawa (with extensive additional training and expertise in endometriosis) that suggested he would review my case and talk to an expert in Calgary to see if there may be a way to keep my care closer to home. I never imagined this would come back to bite me. Nowhere is it documented or stated by the Ottawa doctor that he was refusing me for the reasons lady gynecologist scolded me for.

My medical providers and I knew when the referral was made, that the Ottawa doctor may not accept my case, but would be able to recommend the best possible available course of action for my case. Unfortunately, this seems to have drawn ire from the Edmonton professionals. Lady gynecologist was greatly offended at my disrespect of local professionals for pursuing an additionally trained professional in another city (still in Alberta) and stated I would not find anyone willing to work with me after surgery in another city. They aren’t allowed, she said.

It grated to hear this lady gynecologist suggest I was rejected by the Ottawa doctor because it’s clear I’m doctor shopping. That simply isn’t true and all professionals involved in the referral communicated closely to help determine the best plan for care of my complex case as close to home as possible.

At the last suggestion I’m choosing to be sick, and also irresponsibly trying to play doctor for myself, I began to sob: lady gynecologist took this as an example of why the nature of the care that will most benefit me is a psychiatrist (I have one).

I’ve kept this account as factual and without emotion as much as possible, as my purpose isn’t to call out one gynecologist:

My hope is that this article may serve as a living document to bear witness to the common human rights violations and my battle for justice here in Alberta. One of a million Canadian women that have endured gas lighting, been denied a right to informed consent, denied access to professionals with many years of specialized training in modern women’s health unrelated to health care, and subjected to outdated treatment protocols (according to global and Canadian endometriosis specific researchers and experts).

Patient stories are used to generate fundraising for hospitals and women’s groups, but too often the patient voice is absent from the table when it matters the most. Our stories are not a zoo display for gawking and are truly not intended to generate pity. Women’s groups consulted by government rarely accept patients to the table on equal ground.

Patient voices need to be present and more than just heard. They must be actively listened to. It is also critical for women’s equity to be a driving factor in women’s health unrelated to cancer or child bearing.

After all, in 2019 Canada, women are valuable above and beyond their ability to procreate and my choice is to find power in my pain.

Brandi CK LaPerle is a Metis Canadian actress, model, stand-up comedy producer/host/opener, public speaker, author, writer, WEGO health patient advocate expert, celebrated activist, human right’s women’s health advocate, President of The Endo Revolution, Board Chair for Women’s March Canada- Edmonton Chapter, Director for I Love First Peoples- Edmonton Chapter, FemTruth Global Ambassador, and consultant.

Booking Inquiries: Brandicklaperle@gmail.com

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Courtesy Parking with a Disability Placard

The week of June 11, 2018 I received a letter from the City of Edmonton dated June 13, 2018 informing me that as of July 15, 2018 I would no longer be able to use my disabled parking placard at any city owned parking meters for free.  I posted the letter on my Facebook page and all poop broke lose; someone shared it on other social media sites and before I knew it I had a photographer in my living room; it really did take on a life of its own; I think it’s obvious where I stand on this one.
Not my first rodeo with the media; likely not my last.
Since this issue has come to light there have been opinions express most have been supportive but also some not so much. It is important that people understand the truth about disability parking placards issued in Alberta.
First and foremost they are not free; you need a doctor to complete a form which may have a fee associated.  The placards themselves expire just like a driver’s license; the cost to renew the placard depends on where you get it renewed.
Free parking is limited to the meter or signage at the parking space; if you park at a meter or a parking space that has a two hour limit you need to move your vehicle or risk being ticketed or towed.
You don’t require a driver’s license to obtain a disability placards; they are not limited to individuals with physical disabilities.
If you suspect anyone of abusing the parking placards I urge you to report it; don’t complain about it on social media do something about it.
Eligibility:
https://www.alberta.ca/get-parking-placard-disabilities.aspx#toc-1
How to apply for a parking placard:
https://www.alberta.ca/renew-parking-placard-disabilities.aspx
Report parking placard abuse:
https://www.alberta.ca/report-parking-placard-abuse.aspx
City Councillors have weighed in on this issue as well; perhaps it’s time to restructure City of Edmonton so that the Mayor and City Council are informed before a Department makes decisions instead of being at arms-length.
According to one Member of City Council It has been flagged for discussion at Tuesday’s Council meeting (June 26, 2018). Apparently there will be both long and short-term solutions identified.
Some have indicated they were unaware of this policy change.
I believe we all agree that all tax payers have a right to a certain level of services.  With advances in technology there has to be a way to make it work so that citizens are not negatively impacted; it’s up to City Council and the Mayor to figure it out.
If you would like to express concern or support regarding this new policy you can do so by dialing 311 or emailing 311@edmonton.ca
You can also reach out to your City Councillor or the Mayor; find contact links here:
https://www.edmonton.ca/city_government/mayor-city-councillors.aspx
“I strongly disapprove of this move by the City of Edmonton because it is a valuable program that assists the disabled community at large greatly.  With a majority of this community being on a very fixed income be it a pension, OAS, or AISH, this program is a valued and needed service.”
Steven P.K.
For a City Council and Mayor that tout themselves as ushers of a progressive and inclusive NEW Edmonton, there actions are often contrary to their message. This specific issue is a textbook example of the inability to think long term for a group of Edmontonian’s most at need”
Daniel H.

UPDATE: June 26, 2018 http://edmontonjournal.com/news/local-news/edmonton-apologizes-makes-parking-free-again-for-disability-placard-holders