Happy Halloween

F.A.S.T. on World Stroke Day

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.

My COVID Test

On Friday of the Thanksgiving weekend, I started feeling unwell. I had symptoms consistent with secondary symptoms of COVID. So, sore throat, headache.. That’s in addition to the nasal congestion due to allergies and pain/ache & fatigue due to Fibro & CFS. But it was the nausea and vomiting that was the concern.

However, I had no primary symptoms. So, no fever, no cough. And I was cleared up, feeling better & completely symptom free, other than the allergies stuffy nose.

Now, cuz of the consistency with COVID symptoms, the Scouts have requested a COVID test before I return to working directly with the youth. And I get that. So I booked a test.

COVID Testing

So I missed our meetings that week.. I was supposed to be going back over trail markings then have each lair make their own trail for the other lair. AND I have the kits for the following virtual meeting. So I had our group chair come over & put everything in her van for the meetings. Fun fun fun.

So back about the test. I went online & did the self assessment on Sunday morning when I was still unsettled. That said to take the test & so I booked it.. First available was the Tuesday,, so I booked it.

So, I get there. Now, everyone has to book their appointments prior, so I was surprised when there was a socially distanced luneup for those of us who are booked in. It turns out they had no waiting room and you went straight in, to your testing room.

The testing room was a single office with a chair & a small metal instrument table. I sat down. The person administrating the test came in, dressed in complete PPE from head to toe. She confirmed I was me.

She had me look up advised me it would be quick, only about 10 seconds.. The swab felt weird and a little uncomfortable, but it turns out she was wrong. It only took 6 seconds.

I was informed that the results will be available online between 48 hours and 7 days. If I did not get a result in 7 days I was to contact Public Health. I was also informed that if my test was positive I would hear back from Public Health within 48 hours.

I was then sent out the back door. I did not interested with any other patients & other than the actual test, I was socially distant from everyone.

48 hours later, and I have not heard back from Public Health. But it’s 72 hours, my results were posted on the internet. Negative.

My COVID Test Result : Negative

So while I missed the trail markings meeting, my negative test result enabled me to go to the hike we had this past weekend with my cubs.. Yay!

That hike was a whole other experience!

Sjögren’s Syndrome

What is Sjögren’s Syndrome?
Sjögren’s Syndrome is an autoimmune disorder, where your immune system attacks your own healthy cells. . It commonly affects your eyes and salivary glands, but can also affect other parts of the body..

Symptoms of Sjögren’s Syndrome

• Dry eyes, including a painful burning, itchy or gritty feeling
• Dry mouth, making it difficult to swallow, speak or eat dry foods
• Swelling of the glands in the face and neck areas.
• Eye and mouth dryness can also increase your risk for eye infections and dental problems.

• Joint pain, swelling and stiffness
• Dry skin
• Vaginal dryness
• Persistent dry cough
• Prolonged fatigue.

• A few people will have their liver and kidneys affected.

• A few people will also develop lymphoma (cancer of the lymph nodes).

Symptoms of Sjogrens Syndrome

The cause of Sjögren’s Syndrome is unknown. It is more common in women, people over 40 and those who have rheumatic disease, like rheumatoid arthritis or lupus.

Diagnosing Sjögren’s Syndrome
Besides your symptoms, Sjögren’s Syndrome is diagnosed through tests, including:

• Schirmer’s test – to check whether your eyes are producing enough tears
• Blood tests – to check for antibodies common in Sjögren’s syndrome
• Imaging to test how your salivary glands are working
• Biopsy – a small sliver of tissue from your lip is checked for presence of inflammatory cells.
Sjögren’s syndrome treatment

Treating Sjögren’s Syndrome.
There is no cure for Sjögren’s syndrome however, most people with Sjögren’s Syndrome are able to live normally, without any serious complications – especially if they take care to manage their symptoms.

Treatments to relieve symptoms can involve medications to increase the production of saliva, treat complications like arthritis with non-steroidal anti-inflammatory drugs (NSAIDs) or meds that suppress the immune system.

There are also ways to manage symptoms yourself:

For dry eyes –

• Use artificial tears or an eye lubricant.

• Regular check-ups with an ophthalmologist (eye specialist),

• wear protective eye-wear to avoid exposure to the wind or sun

For dry nose –

• Use a saline spray for a dry nose

For dry mouth –

• Drink frequent sips of water

• Avoid drinking alcohol

• Use artificial saliva, mouth rinses, sugarless gum or lozenges

• Keep your mouth very clean, limit sugar, regular check-ups with a dentist

For general dryness –

• Increase indoor humidity

• Use preservative-free moisturiser for skin

• Avoid drying conditions such as drafts from heaters and air conditioners,

• Avoid exposure to dusty or windy weather.

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I’m sure you are wondering what this has to do with the price of tea in China.. Well.. I originally started this post a few months back when I first started have most of the above issues. After doing a bit of research this seemed the most likely culprit. Unfortunately, my blood test came back negative. So I’m still wondering why I’m having dryness problems. Anyone have any suggestions?

More Non-Scale Victories!

Wearing a Belt. I’m 7 notches shorter on my belt, not even a 3x belt, but a 2x belt that has notches all the way around. & I can wear my smaller belts again!

Fit Old Smaller Clothes. I’m talking fittung into clothing from high school. I pulled out some of my old clothes I had from my marksman competition days when I shot on the Junior Regional & provincial teams in 1999-91. I was stunned to find they actually fit! And one item was too big!!

Moving Like A Normal Person.. It surprising how many things plus people do differently than how ‘normal’ sized people do. For example, I don’t have to tie my shoe from the side cuz the fat is in the way and I can do more yoga poses properly cuz the roll on my tummy stopped me from folding.

Shrinking Fingers. I’ve had to replace rings in a size 6, or wear rings I had in highschool.. Anyone interested in size 7 or 8 rings? Stirling silver or costume..

Increased Flexibility. My body moves differently, better.. I can stretch further than I used to. Maybe one day I will be able to do the splits. Lol.

Decreased Appetite.. It’s not always to the same amount. I used to be able to eat a medium 8 skice pizza plus wings & Cheesey bread but now I’m only interested in 2-3 pieces.. But the other night I could only eat half a small potato & half of a small steak. But also, the other day, I bought a 12″ sub & ate the whole thing plus cookies, but it took a while. Instead of 15 minutes, I took 2 hours to enjoy my dinner. So, yes, there are variations, but generally, I have about 1/3rd of the appetite I used to have.

Can’t Grab My Tummy Roll. Growing up, pants & jeans were made in more of a low-rise style, so I always have worn my clothes just able my hips, so that is where my belt sits. Sinching in my waist repeatedly over the years has resulting into 2 rolls in my stomach, one above my waist, one below. I can’t quite grab my lower tummy roll much & what I can grab is almost entirely loose skin. Not Fat.

I Can See My Scar! 20 I had a laparotomy in my incision went from hip to hip I’m up towards my belly button. While I can still see the scar from the vertical incision, I haven’t been able to see the horizontal incision for over a decade. This is because I was unable to move the roll of fat far enough to be able to see around it to see the scar. I was drying off the other day and noticed cuz of the lax I was able to move the roll much more easily. I took a peek to see if I could see & I can.. & that scar has faded nicely.

I can do more. I’ve noticed that I am physically able to do more.. Yes I have fibro & that limits stuff, but I’m able to do things I couldn’t before. Like make my bed. It’s in a corner to difficult to access the far side to make the bed, but I’m having not problems getting those sheets on anymore.

For those on your own weight-loss journey, what Non-Scale Victories have you had?

When it’s Not Fibro Pain

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.

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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.

Positivity at the Cottage

My parents have a cottage up NE of Peterborough Ontario. Their shore line is comprised of layered stones both above & below the dock.

This summer I got a brilliant idea for the week I had the cottage to myself. I decided to paint these rocks. My Cubs had gotten me started on painting rocks this summer. I found it so relaxing – therapeutic even… But these ones are a little different, I didn’t paint the full rock, I just added a word to each stone. With a good selection of colours, it’s quite pretty..

The left side of the dock. Yes, there are spelling errors that have since been corrected.

I apparently can’t spell or my Fibro Fog kicked in while I was there. I am aware of several spelling errors on these rocks. I went back up recently & corrected all mistakes I am aware of. Was unable to really add much as the dock has been pulled in for the summer..

The stones do have a sealer on them, so hopefully the will last to next year. If not I can redo them. But if I get additional words of positivity & inspiration I can start filling in the other side, as this in only half the wall. The other half is to the right, right of the stairs.

Do you have suggestions for additional words I can use? I know Justice isn’t there yet.. anything else??

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I also did completely cover some of the rocks around the firepit before I added words…

Pretty rocks in the firepit

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

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.

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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!

Give Thanks – Cdn

Happy Thanksgiving, Eh..

This coming weekend is the Canadian Thanksgiving weekend, so I just wanted to wish my fellow Canadians & all international persons within our borders, a Happy Thanksgiving!

I wish to give thanks this year to friends, to family, to Lilly (yes, I know she’s family), to good health, to positivity, to prosperity.

To those not as fortunate, I will keep you in my prayers tonight.

HappyvThanksgiving!!

COVID Long Haulers vs FM & ME/CFS.

Since the onset of COVID19 virus, an new post-viral condition has occured in a significant amount of the population.. It’s believed that   up to 60 percent of people who have recovered still have persistent symptoms up to four months later. These people have called themselves “COVID19 Long Haulers.”

With almost 7 million people in the US who have been tested positive, the forecast of what recovery might look like is troubling. Typically, from onset to clinical recovery ranges from two to six weeks, but there  those experiencing symptoms months after infection.  Which could potentially mean over 4 million people could experience ongoing post-viral symptoms.

Symptoms reported include ongoing crushing fatigue, joint pain, chest pain, general body aches, brain fog with problems both with memory and concentration causing confusion & frustration, headaches, gastrointestinal issues, hair loss, visual impairments, sensitivity to lights and sounds, tingling sensations,  reduced exercise tolerance,  tinnitus, (ringing ears) and chills & sweats,  Anecdotally, some people have reported feeling better for days or weeks before relapsing or ‘flaring’  with old or new symptoms.. 

COVID-19 has potentially significant ongoing Neurological & Physical Issues in the long term for up to 60% of those who were positive for this virus.

This set of symptoms is consistent with both Fibromyalgia(FM) and Myalgic Encephalomyelitis/Chronic Fatigue Syndrome(ME/CFS), fitting best with the later. ME/CFS is believed to be caused as a result of a post-viral reaction..If it weren’t for the cough & shortness of breath, it could have easily been either of these conditions, but more likely the later.

Those experiencing this post-viral condition share a common perception that their symptoms are blatantly dismissed by medical professionals as symptoms, often described as shortness of breath or tingling sensations, are frequently labeled as psychological complaints.

The current 1-2.4 million people in the US and up to 30 million worldwide can empathize with how the medical establishment is treating these people. 

Patients with ME/CFS have been also fighting to be heard, and have so for many years.. With so little information available on this condition, it had been considered a psychological issue not a physician or neurological disease that it has since been determined to be.  Many doctors are still.under-educated on ME/CFS,  still believing it to be psychological and dismiss patients out of hand when test results come back negative.  Those with more updated information believe that Graduated Exercise Therapy (GET) is the expected course of action, but it had been determined that it only aggravated the condition making it worse.  Very few physicians know what ME/CFS is, let alone how to try to treat it. 

So, COVID19 Long Haulers could have a variation of ME/CFS..  To them, I suggest they get in line behind those with ME/CFS because if this post-viral condition does in fact prove to be ME/CFS, it could only help. If not, it is likely a sibling condition where the research can help aswell.