Archive for the ‘Advocacy’ Category

Bell Let’s Talk 2021, Final Tally

January 29, 2021

On Bell Let’s Talk Day, Canadians and people around the world joined in to help create positive change for people living with mental health issues. Thanks to your actions, Bell will donate more to Canadian mental health initiatives.

With 159,173,435 interactions, Bell Canada with donate $7,958,671.75 to Mental Health initiatives across Canada!!

#BellLetsTalk, #BellCause

January 28, 2021
#BellLetsTalk – #BellCause

Today, with your support, Bell will donate towards mental health initiatives in Canada .You do NOT have to be Canadian or in Canada to participate.

For Bell customers, 5¢ is donated for every phone call & text message (but not iMessages) of the Bell network.

For every tweet and retweet using #BellLetsTalk or #BellCause Bell will donate 5¢.

For every video view on Twitter, Facebook, YouTube, Instagram, Pinterest, SnapChat & TikTok, Bell will donate 5¢.

For every video uploaded to TikTok using #BellLetsTalk or #BellCause, Bell will donate 5¢.

Every time you use the Bell Let’s Talk Snapchat filter Bell will donate 5¢ 

Each time you use the Bell Let’s Talk Facebook frame Bell will donate 5¢ 

International Day for Disabled Persons

December 3, 2020

December 3rd 2020

The annual observance of the International Day of Disabled Persons was proclaimed in 1992 by the United Nations General Assembly resolution 473. It aims to promote the rights and well-being of persons with disabilities in all spheres of society and development, and to increase awareness of the situation of persons with disabilities in every aspect of political, social, economic and cultural life. It also aims to promote an understanding of disability issues and mobilize support for the dignity, rights and well-being of persons with disabilities.

International Day of Persons With Disability
December 3, 2020

Newly Diagnosed? Here are some thoughts for you.

November 9, 2020

Fibro can get you down so much. It can also make life so difficult. But it also brings people together, raises awareness and gets people the help they need – but you need to ask 😉

Here are a few thing to keep in mind to help you on your journey…..

  1. Don’t feel guilty. It’s not your fault. You did not cause this.
  2. With Fibro our lives have changed drastically… Don’t feel bad about not being the person you used to be – it’s not your fault…. Try & embrace who you are becoming – the new you.
  3. Housework will always be there tomorrow – but your time, love, experiences won’t be..
  4. Don’t worry about yesterday as it’s gone. Tomorrow hasn’t come yet so enjoy today, however you can. That might be having a bath, taking meds so you can chill out in front of the tv, going for a walk, or whatever you enjoy..
  5. Never ever feel bad about having to rest. This condition is very stressful on our bodies and with poor sleep we got very little healing sleep, so it’s no wonder your exhausted & hurting.
  6. If people want to know how to help you and what is wrong, they will do research. However, you can point family and friends in the right direction by sending them a link to online sites. ButYouDontLookSick.com has the spoon theory which while for another condition, also applied to Fibro.
  7. ENJOY THE GOOD DAYS! But don’t do too much! Took me about 20 years to understand how to pace myself!
  8. Not everything will work. It is a hit & miss process finding out what combination of diet, activity and medications works for you. For example, my bff swears by Gabapentin but I found it exacerbated my symptoms. I am getting great benefit from medical marijuana, but another friend got zero benefit..
  9. There are a ton of online support groups for Fibromyalgia & chronic illness.. Join one or two.. or six… Most others in these groups are like me & are here for you any time you need to chat – that’s one thing I really love about these groups..
  10. There is NO CURE. Ignore anyone who says they were cured, especially if they are trying to sell something – These people do NOT care about you. Or they are in a remission & delusioned in thinking that they are cured.
  11. Some days will be good, some bad and there’s not necessarily anything you could have done to prevent .
  12. This condition waxes and wanes, so while there is no cure, it is possible to improve.. it won’t last as your disease progresses.. Most people once they figure out what works do not deteriorate. I myself am currently bin a form of remission, with pain levels low, but 10 years ago I was bedridden.. Lots of changes over a long time helped me there.. So there is the possibility of improvement & remission with Fibro. I’m just enjoying the increased functionally & lower pain levels while I can.
  13. Flares happen. Sometimes there is nothing you can do to prevent it.. Myself, I’d say 50% of the time I can tell I’ve overdone it & a flare comes on.. The other 50% is unpredictable.. and yes, despite the semi-remission, I still have flares just not to the extent & frequency as I used to.. For that I am eternally grateful.
  14. Above all, take care of yourself and help yourself to feel better. Other people can wait 😉

F.A.S.T. on World Stroke Day

October 29, 2020

This year World Stroke Day is today on Thursday October 29th. this is one of those medical conditions that I do not have but it’s still near and dear to my heart. One of my closest friends had a series of small strokes several years ago. If they hadn’t been dealt with they could have led to a major stroke which could have left us without him. He is doing relatively well, but still does still have some lingering residual effects from his strokes.

So given that today is World Stroke Day I thought it would be a good idea to reinforce the signs of a stroke – F.A.S.T.

Act F.A.S.T
Recognize the signs of stroke

F – Face. During a Stoke, commonly, the person will loose muscular function on one side of the body. This is easily seen in the face as it tends to droop. Ask the person to smile. If the normal smile does not immerge or is very lax, this is a sign of a stroke

A – Arms. Again, with muscular function impaired, one side of the body is significantly weaker. It the person is unable to raise both arms to the same hight easily, this is a sign of a stroke.

S – Speech. Slurred speech, the ability to talk is a result of the weakened musculature in the face. The inability to use correct words or understand others around is disconcerting. Both of these situations are signs of a stroke.

T – Time. Time to call 911. Every second counts with Simone having stroke. If they are unable to relieve the pressure, permanent damage, serious permanent damage, even death can occur. So, even if you are not sure, better safe than sorry.

When it’s Not Fibro Pain

October 20, 2020

Over the years I’ve dealt with a lot of different kinds of pain. I’ve had broken bones, pulled muscles, sprained ankles, torn muscles, chronic Charlie Horses/nasty muscle spasms, concussions & even thrown out my back. Each of those feels different from each other, right? Before a Fibro diagnosis, they are dealt with appropriately.

I’ve also dealt with pain due to endometriosis, irritable bowel syndrome, CFS/ME, fibromyalgia, osteoarthritis, regular arthritis, kidney stones, gallstones… And each of those feels different from each other. I can even differentiate between IBS pain & Endo on my bowel pain.

I’ve dealth with all sorts of different types of pain..

But once you hit that one diagnosis, many doctors don’t bother looking past it. This happens way to often for those of us with Fibromyalgia & even ME/CFS.. When you go to the ER or even just to your family doctor with a new pain issue, many of us are spoken down to and even dismissed saying the pain is due to fibromyalgia. The one time I’ve have a pain that I said wasn’t fibromyalgia but it actually was happened when I had chest pain. It was costochondritis & while this is a Fibro issue, it’s understandable the first time or three that I freak out & head to the ER thinking heart attack.

Now, I’m lucky. I have had a great support system & have over recent years learned to be my own advocate without being a bitch about it.. I have not experienced this problem much with fibromyalgia. I did however experience this at the beginning of my medical journey in my 20s.

I kept having abdominal pain.. After being put off by my GP once or twice, him thinking it was just gas, he sent me after a 4 month wait, to a gynecologist. She did an exam & sent me back to my GP telling him to send me to a GI doc.

So, GP sends me to a gastroenterologist.. After a 6 month wait there, I was scheduled for a colonoscopy (that was fun..not) and was determined to have Irritable Bowel Syndrome.. After getting it settled down by diet & medication, I was still having abdominal pain. GI tells my GP to send me back to the gynecologist.

I had another 2 month wait to she her agai,n over a year after my previous appointment. She tells me, “you don’t have endometriosis”, because my symptoms were atypical, despite still being consistent with Endo. She did agree to do an investigative laparoscope to shut me up & “just in case” she was wrong. She Was Wrong. I had Stage 3 Endo across my abdomen. So the investigative laparoscoped turned into a treatment laparoscope where she tried to in size and burn off any visual endometriosis cells. She has to go back in 6 months later to get the remaining endometrial cells higher in my abdomen that she missed the first time because she “didn’t have long my enough tools”.

So I learned early on to be an advocate for myself, with support from friends & family. If you feel your are being dismissed, say so. Cuz yes, your pain *could’ be from your fibromyalgia, but it ‘could’ also be something else.

So, my doctor’s know that if something’s not right, I will stand up and say so, not taking no for an answer.


Those who know me personally, would probably say to me, yeah, but what about that issue with your shoulder? To be honest, that is still a work in progress. Now that physio is back available, I’ll be asking my GP for a prescription & get that set up. Yes, it started in March, and I’m just getting to treatment now. But remember, alot of things closed here in Canada for quite awhile, so yeah, it’s taking a little longer to get things dealt with in this issue.

Disabled Persons Have No Quality of Life, According to One Hospital

October 13, 2020

On June 11th, Michael Hickson, a quadriplegic black man with COVID-19 died in an Austin Texas hospital.

What makes this unique is that without consulting the family, the doctors determined that he had no quality of life due to his disability and other medical issues. Because he was not healthy prior to his contracting COVID, the physicians determined that his life was not worth attempting to save.

The following conversation between his doctor and his wife was caught on audio & posted on youtube

Doctor: So as of right now, his quality of life — he doesn’t have much of one.

Melissa: What do you mean? Because he’s paralyzed with a brain injury he doesn’t have quality of life?

Doctor: Correct.


Hickson was refused food or treatment for 6 days

In the YouTube video show at the bottom, the doctor can be heard saying “he will have lines and tubes coming out of his body… That’s not quality-of-life.” It is if they sustain you while your fight a disease.

Apparently my definition & his/the hospital’s definition of quality is vastly different.

We love be in a culture that doesn’t see disabled life as quality despite the fact a quarter of the US population & 22% of the Canadian population are living with a disability in some form of another.

So, for persons with disabilities, this is super scary. Does this mean with my multiple medical issues, I would not be considered ‘on worth’ saving aswell?

With this l MD of attitude in the medical community, us with disabilities have every rightly to be concerned & even afraid.

So, when you see me repeatedly pushing about masks, paying attention to disabled (& elderly for that matter) people, and maintaining social distance I have a very valid & legitimate reason for promoting this issue.

Do Not sweep this under the rug. Your disabled friends are in serious, potential danger. Our lives are at extra risk.

We must unite and fight this!

Wear. The. Mask.

September 18, 2020

I have been wearing a mask in stores (and limiting my trips) since March when this whole thing went down.

I’m wearing one of the four masks I currently have.. I’ve ordered a few more of various different styles..

I’m not sure how being considerate to others for the common good is now being mocked by some who are calling it “living in fear”, but it needs to stop….
When I wear a mask over my nose and mouth in public and in the stores/ Supermarkets/ Pharmacies/ Offices – I want you to know the following:
🔵 I’m educated enough to know that I could be asymptomatic and still give you the virus.
🔵 No, I don’t “live in fear” of the virus; I just want to be part of the solution, not the problem.
🔵 I don’t feel like the “government controls me”. I feel like I’m an adult contributing to the security in our society and I want to teach others the same.
🔵 If we could all live with the consideration of others in mind, the whole world would be a much better place.
🔵 Wearing a mask doesn’t make me weak, scared, stupid or even “controlled”. It makes me caring and responsible.
🔵 When you think about your appearance, discomfort, or other people’s opinion of you, imagine a loved one – a child, father, mother, grandparent, aunt, uncle or even a stranger – placed on a ventilator, alone without you or any family member allowed at their bedside…..Ask yourself if you could have helped them a little by wearing a mask.


I copied and posted.. I take no credit in writing this.. The original author is unknown… it’s from another friend’s Facebook who also copied & shared fron someone who copied & shared..etc..

Who else will do the same?

International Overdose Awareness Day

August 31, 2020

I recently only found out about this day of awareness by a flier & purple flowers that caught my eye.. I saw this in, of all places, Lakefield Ontario.. Population 2,753.

International Overdose Awareness Day is a global event held on 31 August each year and aims to raise awareness of overdose and reduce the stigma of a drug-related death. It also acknowledges the grief felt by families and friends remembering those who have died or had a permanent injury as a result of drug overdose.

International Overdose Awareness Day spreads the message that overdose death is preventable. Thousands of people die each year from drug overdose. They come from all walks of life.

This is kind of important for mecuz when my mental health was bad.. this was my consistent choice of dealing, or rather not dealing with mybisdues..

Severe Myalgic Encephalomyelitis (ME) Day of Understanding and Remembrance

August 7, 2020

Tomorrow, August 8th, is Sophia Mirza’s birthday.

Sophia Mirza was accused of seeking attention, her family were accused of enabling her, and she was sent to a psychiatric facility where her health declined rapidly. Sophia died of severe ME in 2005 at the age of 32. The coroner’s report showed that Sophia had massive spinal cord inflammation at the time of her death, and that she died as a result of acute renal failure arising from the effects of ME.

Severe Myalgic Encephalomyelitis (ME) Day of Understanding and Remembrance  was started in 2013 as a response to Sophia”s death.

Unfortunately, Sophia’s situation is not unique.

17-year-old Gigi from the UK was hospitalized with severe ME, and threatened with being sectioned  – forced institutionalization – against her will to a psychiatric ward for her inability to eat, speak or walk due to severe ME. Gigi’s family was told to stop “colluding” with their daughter.

24-year old Karina was forcibly removed from her home in Denmark in 2013 because of her myalgic encephalomyelitis (ME) illness for “treatment”. Because her mental and physical health deteriorated so quickly from ME-induced neurological damage, severe over-medication, trauma as a result of her circumstances, or some combination of all three.. she became unable to communicate verbally.. and was limited to s wheelchair because of her “treatment”. These “treatments included cognitive behavioural therapy (CBT), graded exercise therapy (GET), occupational therapy and psychotropic medications, all have been debunked and since considered detrimental by most ME specialists. She was lucky and was released in 2013 under significant international pressure, back home with her parents.


Myalgic Encephalomyelitis (ME) is a chronic, often severely disabling disease, that affects the autonomic nervous system, immune system, endocrine system, among others. It afflicts over one million people in the United States alone and as many as 17 million worldwide.  ME is a disease that robs individuals of their health, similar to untreated HIV. There are those that refer to ME as non-HIV AIDS – with good cause, as the disease can leave sufferers confined to a bed, with little capacity to fend for themselves.

With severe ME a person’s basic functionality is lost.. What would you do if you last the ability to complete any of the following basic tasks,: brush your hair or teeth, feeding yourself, going to ths bathroom unassisted, cleanliness – being able to bathe one’s self, being able to tolerate light, sound and/or touch, move unassisted in your personal space.

Many people, dare I say most, know someone who has developed ME. They done even know that because ¼ of ME, patients with Severe ME end up disappearing into darkened rooms and rarely seen. 

While I have ME & likely have since high school, my symptoms have always been relatively calm com pared to 25% who have been diagnosed with Severe Myalgic Encephalomyelitis.

August 8th is set aside for these people living their life with the most devastating of this deviating condition. It is these people we acknowledge today & honour their struggles as they live or in some cases exist with this disease. This day also for Awareness of the Severity of ME & the growing need to include the severe patients in current studies. Finally it is to remember those who we have lost both directly & indirectly due to Myalgic Encephalomyelitis.


**For clarification, this condition is also called Chronic Fatigue Syndrome.. it’s is often referred to as either CFS/ME or ME/CFS