Archive for April, 2021

Masks for May

April 29, 2021

May is Fibromyalgia Awareness Month

May 12th is Fibromyalgia Awareness Day.

My niece is in her final year of a specializes Illustration BA program. I asked her for some design ideas for masks to celebrate.. or.. acknowledge.. Spread Awareness! For Fibromyalgia.. She is still working on her final projects,so she’s been super busy & has not had a chance, but will shortly. Below are some ideas I stole that I think would work or something similar. Thoughts?

Purple Ribbons with “Fibromyalgia Awareness”

Purple Ribbons with Butterfly

I wear purple for… My Sister.. My Friend… My Mom.. My Aunt.. My Daughter.. My BFF,.. My Wife.. My Brother.. My Neice.. etc..

Stylized Ribbons.. I also have the online alias of NeonRose, so the rose on the left is totally appropriate for me.. 😉

Ribbons & Miscellaneous Text

I also have a black shirt that says “This Shirt Turns Black When I’m in Pain”. While I wasn’t planning on having black masks I was considering the dark purple and this would work on that as well.

Thoughts? Opinions? Suggestions?

What Does a Disability Look Like?

April 26, 2021

According to the World Health Organization, disability has three components:

  1. Impairment in a person’s body structure or function, either physical or mental. Examples include loss of a limb, loss of vision or memory loss.
  2. Activity limitation, such as difficulty seeing, hearing, walking, or problem solving.
  3. Participation restrictions to normal daily activities. Examples include working, and engaging in social & recreational activities,

So as you can see, not all persons with disability have necessarily have a physical component. Additionally, there are medical conditions and disabilities that are not visible including diabetes, lupus & fibromyalgia.

I’m a good example of that in that I have fibromyalgia and other issues but I don’t use a cane at the moment. As a result, I don’t look like I have an impairment . Pain is invisible so they don’t know and cannot tell that my pain level is a 1/10 (I know, very funny) or 8/10 today.

Scout Popcorn

April 22, 2021

It’s Baa-aak!!!

Family Movie Night In

Yes. I know. You missed it in the fall, but we have finally started the 2020-2021 Popcorn campaign..

Who: You

What: We have a new supplier of Nut-free, Gluten-free, Premium, Canadian Popcorn products They include popping kernels, Caramel Corn, Belgian Chocolate Drizzled Caramel Corn and Popcorn Seasoning. We also offer bundles of popped kernels in combinations with Cheddar, Butter,. Sweet & Salty,. Dill, Salt & Vinegar, and BBQ Flavours.

Where: http://www.ScoutPopcorn.ca

When: the campaign runs April 15 – June 15 2021

Why: Scouts Canada says it’s to help support Scouting Groups in funding more great adventures and most importantly, you give kids something to look forward to. PThisvfundraisevall.supportd the No Youth Left Behind subsidy program, helping youth facing economic barriers experience the benefits of Scouting..

Why Us: I’m with the 1st & 13th/30th Oshawa Cub packs. 2 weeks after the word shut down in March 2020, the 13th Oshawa started back up again, in a virtual environment. 2 weeks later we were joined by the 1st Oshawa to run the 2 packs together for the remained of the Scouting Year, including a virtual camp in June.

We know this had been hard on the youth and for some of them, Cubs was their only social.interaction with friends outside of their Bubble. Because of that, we continued on through the summer part time including a second virtual camp requested by the youth..

Due to lack of available leadership, in September we amagimated the 21st Oshawa into the 1st & 13th Oshawa Packs.. We have been bouncing between virtual & in-person meetings depending on the government & Scouts Canada restrictions. We also had the 30th merge with the 13th in January..

To run our programs, the youth need supplies for virtual activities, and even some supplies for in-person activities (cuz you never know what we will get flipped in virtual only). So, we have been providing this to the youth with very little funding, as we are not currently braking weekly dues. Every 6 weeks or so, the youth receive Cub Adventure Kits with supplies such as paint, wax, popsicle sticks, rope, first aid supplies, seeds, dirt, building kits for birdhouses, Kub Kars, drink stations & other projects, rocks, origami, Soapstone and snacks.

It is through the support of people like you who purchase the Scouts Canada products like the Scout Popcorn, Scout Coffee & Scout Seeds. And for that I, WE, Thank You.

Note: While the 1st Oshawa is not participating in this fundraiser, you with find the 13th Oshawa Cub Pack listed with our other sections, as well as the 30th Oshawa.

COVID Vaccine Eligibility

April 19, 2021

So currently in Ontario, where I live, there is a three tier plan, which itself is made up of stages.

Phase 1 is for High-risk populations including

  • Congregate living for seniors
  • Health care workers
  • Adults in First Nations, Métis and Inuit populations
  • Adult chronic home care recipients
  • Adults ages 80 and older
  • Adults with the highest-risk health conditions:

From this group, my Brother-in-law, my 2 nieces & my Dad were all quickly eligible for the first phase.

Phase II is described as Mass deliveries of vaccines. This is our current phasewhere we currently stand in the process. This phase includes:

  • Adults aged 60 to 79, in 5-year increments
  • High-risk congregate settings (such as shelters, community living)
  • Individuals with high-risk chronic conditions and their caregivers
  • Those who cannot work from home
  • At-risk populations

So, with that description,you’d think I would be eligible in Phase 2 for either Endo, Fobro, CFS/ME, etc.. but no.. here are the lists of conditions that apply:

Highest-Risk Health Conditions, eligible at phase I:

  • Organ transplant recipients
  • Hematopoietic stem cell transplant recipients
  • Neurological diseases in which respiratory function may be compromised (e.g., motor neuron disease, myasthenia gravis, multiple sclerosis)
  • Haematological malignancy diagnosed <1 year
  • Kidney disease eGFR< 30

Of these conditions, I have none. .

High-Risk Health Conditions currently eligible

  • Obesity (BMI > 40)
  • Other treatments causing immunosuppression (e.g., chemotherapy, immunity- weakening medications)
  • Intellectual or developmental disabilities (e.g., Down Syndrome)

Of these conditions, I have none. It’s interesting that someone who is so far they are morbidly obese has priority over someone with a heart condition..

I no longer has a BMI over 40.. At my worst, my BMI was over 50 ( I just looked that up & I’m like “Damn, Girl!”) My BMI is now approximately 33.. so, I’m not eligible for that either.

At-Risk Health Conditions:

  • Immune deficiencies/autoimmune disorders
  • Stroke/cerebrovascular disease
  • Dementia
  • Diabetes
  • Liver disease
  • All other cancers
  • Respiratory diseases
  • Spleen problems (e.g., asplenia)
  • Heart disease
  • Hypertension with end organ damage
  • Diagnosis of mental disorder
  • Substance use disorders
  • Sickle Cell Disease
  • Thalassemia
  • Pregnancy
  • Immunocompromising health conditions
  • Other disabilities requiring direct support care in the community

Again no Fibro, No Endo, No CFS/ME.. Whil those last 2 are considered to possibly be autoimmune, they are not classified as such. So instead I qualify due to:

  • Respiratory diseases – I have asthma. It is currently controlled & I would only need th ventolin for strenuous activity
  • Diagnosis of mental disorder – I have chronic depression, have since I was 16
  • Substance use disorders – I have an addiction to fentanyl – controlled & my last use was about 3 years ago.

I’m not sure what the “other disabilities ‘ entails.. But I doubt it covers the other conditions, but it’s so vague.

So, cuz I am depressed, cuz I used to need a puffer & cuz I like fentanyl a little too much, I am eligible for phase not cuz of the Endo, Fibro, CFS/ME. Apparently people with these condition are otherwise only eligible in stage 3 with the rest of Canada. That is unless their family doctor gets vaccines.

Crappy Week

April 16, 2021

So, I posted on the 13th of April about how crappy I was feeling on Monday… While I’m not having a problem getting my shower door open, I’m still feeling like crap.

It’s been a long time for me that I’ve have sustained a higher pain.level over more than a few days..feeling crappy started Sunday morning.

If you ask me what I did on Saturday? I went for a drive. I love to drive, but with the price of gas right now, it’s a little expensive. So, I has in & out of the car & driving around.. Even hopped on the highway to drop of my BFF’s birthday pressie..

So nothing was done out of the ordinary that could trigger a flare. To be honest, I’m surprised I didn’t flare the weekend before at the cottage when I *did* do something that could cause a flare – helping my Dad move the trailer.. I just don’t get it

And to top it off, I’m not sure what my body is trying to do. My pain levels are up. And all I have thinking about is fentanyl…. I just don’t know if it’s a want for pain relief or if the want is to be oblivious to everything cuz of the medication, or just to get high..

Do I Want the Vaccine?

April 15, 2021

For me, unless I’m told otherwise the answer is yes. I would not, however, get my shot done at a pharmacy or a casual clinical..There would be very few medical doctors around which would be a bad thing considering my allergies, several of which are medications.

Yes!

Which one?

The best description I can say about the vaccine and which one I want is based on a comment in with our Minister of Health stated that the’ “best one you can get is the first one available”, depending of course.on the issues like allergies.. & is in a clinic with doctors around, not at a pharmacy.

Yesterday was Exhausting!

April 13, 2021

Yesterday was exhausting. I don’t know how. I don’t know why. I didn’t do much. I had a chronic pain support group in the morning on Zoom and a workshop at lunchtime also on Zoom (tho I napped through part of it- Ooops). I had a medical appointment which consisted of me putting my feet into foam for my orthotics and saying I like those ones. I did not have to make dinner. I did not have to run around after my dog. I did pretty much nothing, but it was exhausting & my day was still not over..

As some of you may know, so if you may not I am a night owl. I tend to go to sleep well after midnight.

Last night was a little different however. I’m winding down from my day and I’m playing on my phone and chatted with one of my Cub leaders who’s also up until the wee hours. I realize that I’m almost at the end of my rope and I’m thinking it’s probably what? 1, maybe 2 o’clock in the morning? Nope. I look at the clock & it is 9:24pm. I could not believe it.

9:24pm & I’m Exhausted

& so I decide that sleep is probably needed..but I *had* to have a shower (those who lost alot of weight understand why). Despite my hair not have being washed in over a week I had decided that I wasn’t going to wash my hair because that would be just too much for me to handle.

I was right. Cuz what do Indo in the shower, under the nice hot spray? I decide “Nah, I got this, I can wash my hair tonight”. Funny girl. But I did get myself showered and hair cleaned & conditioned. All nice & clean and no worse for wear, right? *Snicker*

Corner shower stall with a door that I couldn’t open.

My problem was the shower door..You see, I don’t have a tub, just a good sized shower stall with a door similar to the one shown here And after I turned off the water I pushed the door open. Or rather, I tried. It wouldn’t budge.. Tried again, harder & it jiggled.. I had to put a bit of weight behind it to get it open. Ya know why? Cuz I was too freaking weak & exhausted to get the damn door open! & Do you know how *light* those things are?

Ultimate in Fibro Fog – Part II

April 12, 2021

No, I have not found it yet.. BUT, I do remember what I’d already bought her.. there might be something else, but the one I remembered was one important gift I’d forgotten.

No I’m.not telling you what it is! She doesn’t know so I’m not gonna share it out here! Don’t be silly!!

Ultimate in Fibro Fog – Part I

Who Diagnosed Me?

April 8, 2021

My initial diagnosis was a few things.. I took maybe a dozen blood tests for the obvious including Lupus, Lyme and that’s sort of thing. I saw a rheumatologist who determined I had “symptoms consistent with fibromyalgia.” I immediately requested a referral from my GP to the Environmental Health Clinic at Women’s College Hospital in Toronto. It took just over 2 years to get my appointment but I got in. Luckily for me, my partner at the time was working at Sunnybrook/WCH,. He pulled a few strings and called in a few favours to ensure that I got the top physician.

I was able to see Dr Alison Bested. At the time she was *the* top physician for Fbromyalgia, Myalgic Encephalitis/Chronic Fatigue Syndrome and Multiple Chemical Snsitivities

Dr Alison Christine Bested. MD, FRCP(C). At a Millions Missing Event in October 2016

Dr Alison Christine Bested, MD, FRCP(C), is a Haematological Pathologist, one of only about 100 Haematological Pathologists in Canada. Her training covered areas including: Immunology, Blood Banking, Genetics, Anatomical Pathology, Internal Medicine and Haematology both clinical and laboratory. She is currently the Chair of Integrative Medicine at Nova Southeastern University. Prior to this position, she was the Medical Director of the Complex Chronic Disease Program at BC Women’s Hospital clinic, in Vancouver, British Columbia. Prior to this she was Medical Specialist Liaison, then Acting Medical Director at the Environmental Health Clinic at Women’s College Health Sciences Centre, in Toronto, Ontario,. Dr. Bested’s medical specialty practice had dealt with complex chronic medical conditions including: Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS), Fibromyalgia (FM), Multiple Chemical Sensitivity (MCS) and persistent Lyme Disease.

Dr. Bested participated on the Expert Medical Consensus Panel that wrote the Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Clinical Working Case Definition, Diagnostic and Treatment Protocols. This consensus definition was published in the Journal of Chronic Fatigue Syndrome in 2003. In the literature this is known as the Canadian Consensus Definition of ME/CFS and is used worldwide by clinicians and researchers. She was one of the authors of the 2014 ME/CFS Primer for Clinicians published by the International Association of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. This summary publication is an updated version of the Canadian Consensus Definition of ME/CFS. Dr Bested has, with co-authors, written 2 books on these topics: : “Hope and Help for Chronic Fatigue Syndrome and Fibromyalgia”, 2nd Edition, 2008 and “The Complete Fibromyalgia Health Diet Guild and Cookbook”, 2013.

What did she do? She sent me for more extensive testing, mainly blood work. Unfortunately due to cost I was unable to pay for some of the tests which she had ordered. So while she didn’t have 100% of the results she did confirm 100% that I do have fibromyalgia. Her staff also confirmed the CFS diagnosis aswell.

Ultimate in Fibro Fog

April 5, 2021

The best example of Fibro Fog:
My best friend’s Birthday is this week.. & as usual, I bought her gift ages ago. I have one problem, well two actually..

  1. I don’t remember where the heck I put it.. I know it was ‘someplace safe’. I should know better – if it’s not in my line of sight it’s not safe! Lol..
  2. Unfortunately I’m not even sure where to even start looking because of problem number two. I don’t remember *what* it was.. I don’t recall what I bought her. ☹️

God help me.


Edit16/04/21: I finally remembered *what*, now I have to figure out where, but I think I’m good. 👍