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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Endo Is Real.org

 

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

 

SEATED YOGA

My journey with Yoga has taken many twists and turns over the course of several years.  I became aware of seated yoga during the time I successfully initiated a petition to get a Sci-Fit (Seated Elliptical) purchased for a City of Edmonton run Recreation Centre.

The first yoga class I participated in was a seated yoga class through a non-profit agency that was perfect for someone with mobility issues. I then decided to try yoga classes that were available through the City of Edmonton run Recreation Centres.  The first yoga class I participated in through a recreation centre had two different yoga styles.

Gentle yoga and Yin Yoga, Gentle yoga was described to me as gentle in nature, supposed to be perfect for those who cannot meet the demands of physically straining exercises. A typical gentle yoga session consists of slight modifications of the standard poses of hatha yoga. In a lot of poses, the only modification made is that the practitioner is not forced to go as deeply into the pose as required by the standard yoga session. The ultimate aim of this kind of practice is to make sure that the practitioner does not experience any discomfort while performing the pose.

Yin Yoga was described to me as a slow-paced style of yoga with poses that can be held comparatively long periods of time, mostly sitting or lying poses. Yin Yoga poses apply moderate pressure to the connective tissues, the tendons, fascia, and ligaments—with the aim of increasing circulation in the joints and improving flexibility.

I attended a few classes but found the poses to be too difficult; I made the decision to stop participating in the yoga class; I them attempted to lobby the City of Edmonton to encourage them to offer seated yoga classes.

And this is where it gets interesting; sometime later I received word from someone that a yoga class called chair yoga was being offered by a Recreation Centre run by the City of Edmonton.  I attended the class because I had been lead to believe that it was the same as seated yoga once again I attended classes for a time but found that the class was not seated yoga but in fact it was literally a yoga class that uses a chair as a prop for yoga poses; after attending several classes of chair yoga I became concerned for my physical safety; yet again I quit another yoga class that isn’t suitable for me; it became so frustrating for me I decided to give up the search for a suitable yoga class; I have once again decided to lobby the City of Edmonton to offer a suitable seated yoga class; ultimately I think it’s important to offer seated yoga classes and adapted workout equipment such as the sci-fit in all city run recreation centres rather than having a seated yoga class at one centre and adapted equipment at another location; in keeping with my belief in creating a level playing field for all citizens and to engage, enlighten and empower.

Unfortunately the City of Edmonton Community and Recreation Facilities staff confirmed that they currently do not offer a seated yoga class at any of their facilities but they do offer chair yoga classes.   If you or someone you know would like to urge the City of Edmonton to offer a seated yoga class, Dial 311 or email 311@edmonton.ca.  You may even consider contacting your City Councillor for support.

To inquire if a yoga instructor is registered with the professional association you can reach out to:

Yoga Association of Alberta 

11759 Groat Road
Edmonton, AB
T5M 3K6
Tel: (780) 427-8776
E-mail: yaa@yoga.ca

I mentioned the Sci – Fit (Seated Elliptical) in this blog post and others in the past; The stepper and the arm crank style are available at the following facilities:

Recumbent Steppers
The Kinsmen Sports Center  (1)
Terwillegar Community Recreation Centre (1) **as of September this will increase to 2** 
Clareview Community Recreation Centre (1)
The Meadows Community Recreation Centre (2)
Commonwealth Community Recreation Centre (2)
Sci Fit Total Body Trainer
Central Lions Recreation Centre (1) They have there own membership structure
Sci Fit Arm Ergometer 
The Kinsmen Sports Center (2)
Terwillegar Community Recreation Centre (2) **Right now these are Technogym Arm Cranks, as of September they will be sci fit** Clareview Community Recreation Centre (1)
The Meadows Community Recreation Centre (2)
Commonwealth Community Recreation Centre (1)
Mill Woods Recreation Centre (1)
Oleary Fitness and Leisure Centre (1)

 

PAIN MANAGEMENT

I was born with Spina Bifida, pain hasnt always been a big deal for me.  However I have never experienced pain as intense as I did until I started to show signed of Rheumatoid Arthritis.  After several Cortisone injections and Emergency Room visits in August of 2017 I was finally diagnosed with Rheumatoid Arthritis.  I have been doing the medical protocol that is considered acceptable; which involves a weekly injection of Methotrexate; for those of you who have never heard of Methotrexate it is a small dose of a chemotherapy agent and immune system suppressant that has to be accompanied by daily folic acid supplements. I have also been receiving supplemental treatments.  These treatments include acupuncture, massage, paraffin wax and exercise being the most recent additions. I have been doing acupuncture treatments for approximately 30 years off and on.  I first went to see an acupuncturist because I had liquid build-up in my right knee and couldn’t tolerate anti-inflammatory medication; 3 treatments later the fluid disappeared. There are two types of acupuncture, electronic stimulation and needle acupuncture or a combination of both.   Until recently I preferred electronic stimulation acupuncture or electronic acupuncture; without needles. I recently discovered that needle acupuncture and electronic acupuncture can be applied at the same time by attaching electronic stimulators to the needles.  I have also been getting massage therapy for a number of years intermittently which is where I discovered Paraffin wax treatments for my hands; exercise being the most recent addition using a seating elliptical machine called a Sci-Fit (See Picture); I have found that the combination of all the treatments are effective in reducing pain. I am supportive of all the supplemental treatments I have mentioned however if you see someone and they tell you they can cure what ails you or when you tell them your diagnosis and they don’t know what it is please don’t go back you will be wasting your money. Inform all medical professionals involved in your treatment plan of all the treatments you are engaged in.    Contact the professional associations to confirm if your massage therapist and acupuncturist are members

Massage Therapists Association of Alberta #E. RED DEER, AB
#2, 7429 49 Ave
Red Deer, AB
T4P 1N2
Telephone: (403) 340-1913
Email: info@mtaalberta.com

College & Assn of Acupuncturists of Alberta
#201, 9612 51 Ave NW
Edmonton, AB
T6E 5A6
Phone: 780-466-7787
Email: reception@acupuncturealberta.ca

P.S: If you suffer from headaches you may also want to consider getting scalp treatments; inquire at your salon. They condition and massage your scalp; the treatment can last anywhere from 5 to 15 minutes.

 

Joel Holmberg, in his own words

By now most of you have heard about the gentlemen who offered to share his ‘stolen land’ with a First Nations family.  This is Joel Holmberg’s story in his own words.

I never could be an Indian because I’m the whitest dude you ever saw. My ancestors were the empire, the senators of Rome; the colonizers. I was born an unwanted bastard. I came up suffering; beaten and abused. I was full of suicidal thoughts. I was to and from the arms of death and the arms of the angels. Dying; living and dying again; fighting. I had nobody to turn to and nothing to hope for. Booze, drugs, madness and pain was the sentence and I did the time with that way of coping with pain until it nearly did me in. In this country I have lived in four provinces and one territory. It’s not very kind to outsiders most places. I found out there was another culture in this country; an older one. They loved the land like I do, respected others and were kind. They helped me to find my own way to healing and prayed for me even though I was possibly and probably a direct descendant of the people that brought the suffering on to their ancestors. I support them because the rich white Canada tossed me aside like garbage and shit on me when I needed help, but those good people did not. They made a serious effort to help me. I support them because my heart says they are good just like it also says that so much of our sick nation that we’re all trying to survive in isn’t. The traditional culture that has what it takes to heal nations, manage the land in a good way, and bring people together is the one really worth saving. Not the sick racist one, the elitist one. Not the greedy, mean, woman killing, child harming one, the divisive culture of destruction, greed, corruption, and pollution. The diseased, ignorant, cruel, poisoning, concrete and asphalt heap of the broken. I don’t like the medieval school systems, the broken religion systems, the thieving government systems, the evil banking systems, or the vibrating right out of your skin assaulted nervous systems. I like the sound of the wind in the leaves, kids laughing, water moving, birds singing their songs, and I like the grass on my bare feet. I like sunshine warm on my skin and fresh air in my lungs. I love wildlife and peaceful life. If I was a millionaire I would give it to a traditional so that the healing can be spread to all the places that it’s badly needed and the next generations can have a chance. The guy that said does not fight the existing model but instead create a new one was right. We maybe don’t have to fight or be divided. We might just have to make better choices. Together good people can make a better way of living. A healing of land, water, peoples and of the disheartening division that traps us in fear. I think maybe it starts with respect for good hearts, good deeds, good ways; good intentions and for life in any forms. This nation is not devoid of wisdom though it really looks that way right now. Somehow we have to come together and make a new nation; one that cares regardless of race, color, gender, orientation, culture or wealth, one that takes care of the land for future generations; one that combines the greatest good from all the people here. We could be a nation that seeks out the lost, hurt, and the suffering. Seeks them out, embraces them and helps them to heal and flourish rather than turning our backs on them. I hope one day all the people can have an equal opportunity and that we can allow for the traditional way of living on this land to be upheld for the benefit of all. The wisdom, kindnesses, respect and healing ways of the first people will make all of the people stronger and happier. I’m not an Indian, and never will be, nor do I want to be, but I respect the culture very much. I love it. We want the same things in this time on this land. Justice, freedom, respect, caring, loving, health, healing, clean waters, clean air, clean soil, clean food, and a way to keep it clean and abundant for future generations. Let’s get together and do something new; one tribe of one people. Humble, respectful, kind and color blind people. I don’t know much about anything, but in my heart I feel like this would be a good way forward. That’s what was on my mind but it came from my heart.

 

Introduction to Mirella Cooks

Welcome to Mirella Cooks; my family is from Altilia, Cosenza in the southern region of Calabria in Italy; a small village called Maione. I was born in Canada however my family kept many of the traditions from Italy and food has always been an important part of my family’s daily life.

Some of the recipes you will find in this book are: Porpette di Pane, Homemade Bread and pasta, desserts like Turdilli, Persica Cookies and more than 100 other recipes that are authentic to the Italian Culture.

You will also find a short lesson in Italian, some of the more common foods that you will find at most Italian meals as well as cooking abbreviations and measurement conversions. When trying the recipes in this book keep in mind that not only is Italian cooking regional but each village may have its own recipe or even pronunciation of the recipes in this book.

I became interested in preparing Italian food when as an adult I went in search of authentic Italian restaurants and realized that there were very few, most Italian restaurants are what I consider inspired by Italian; I have recently heard that even the restaurants in Italy are moving away from authenticity because they want to appeal to tourists. This lead me to research for recipes on the internet and I soon came to the realisation that although there were authentic Italian recipes on the internet that were similar there was no one place that a person could go to get the kind of recipes I enjoy preparing and sharing with family and friends; and so was Mirella Cooks born.

Italian cooking isn’t complicated as most recipes only contain few ingredients, the simpler the better when it comes to Italian cooking. Italians from the region where my family is from rely on good quality fresh ingredients rather than extravagant recipes; some would call it rustic cooking. If you travel through the various regions of Italy you will find that not one region has the same way of presenting or cooking food in fact most villages have their own versions of recipes, very much like the hundreds of dialects spoken in Italy.

Although there are some recipes in this book that may seem difficult they are very simple; the ingredients are readily available at your local grocery store or Italian import store.

Don’t be intimidated to try them; what’s the worst that can happen; you may actually create something that you will enjoy; I encourage you to experiment and make them your own. If you find you are not happy with the outcome try them again. That is how I learned to create most of the recipes in this book.

Keeping in mind that not all of the ingredients in this book originate in Italy they certainly were prominent in the home I grew up in. I hope you have fun and enjoy experimenting. I look forward to hearing about your experiences in exploring the recipes in this book; buon appetito.

Mirella