Category: Disabled

flu still life

Flu, Colds & Chronic Illness Considerations

Suddenly your nose starts to run, your throat is a bit scratchy and you may even feel overheated. Do you have the dreaded flu or a cold?

Many people think a fever occurs only with flu, but there is a huge overlap between non-flu viruses and those produce by classic influenza. That said, there are some predictable differences between the two contagious illnesses.

Symptom

Influenza

Common Cold

Other Viral

Onset

Quick, An Hour or Less

Several Days of Increasing Symptoms

Can Be Within Hours

Cough

Dry, Nonproductive

Wet, Produces Mucous

Fever

Yes

yes

Body Aches

Like You Were Run Over by a Truck

Slightly to Moderately Increased

Head Congestion

Some

Severe, Often Sinuses Inflamed

Sore Throat

Some

Often With Swollen Neck Glands

GI—Nausea, Diarrhea, Stomach Ache

No

No

Yes

Just about everyone in the medical community, as well as many bloggers, say it’s crucial everyone get a flu vaccination—preferably before the end of October. The flu shot’s effectiveness can vary from about 50% to 90% depending on how well vaccine manufacturers determined which strain of flu would be most active in the 2018-19 Flu Season.

Experts say that even if the vaccine is only 30-40% effective someone with it will have a quicker and easier time getting over the flu. Another reason frequently discussed is that vaccinations save lives. The rationale is that by vaccinating yourself, you’ll be much less likely to acquire and spread it to at-risk groups.

But say you are one of the millions of people with a compromised immune system. What to do? This was the subject of a recent, very long thread on the subject on a Facebook group I frequent for people with ME/CFS.

By the time the thread closed, there was no clear consensus. People spoke about how many months (usually three to four) they took to recover from flu and swore they would never go without a vaccination again. Others said they were down for three to four weeks with immune system activation after receiving a vaccination for flu.

Personally, I use the Mayo Health System. Inexplicably, Mayo still recommends the discredited results of an infamous research study–graded exercise therapy (GET) and cognitive behavioral therapy (CBT) as the primary treatments for chronic fatigue syndrome. Sadly, it does not list myalgic encephalomyelitis as a disease or condition.

I have a Masters in Nursing Science and worked as a Nurse Practitioner in South Carolina, Colorado, and Wisconsin before contracting this damn disease (ME/CFS). I do my own research and, since Mayo still clings to outdated and erroneous recommendations based on the highly flawed PACE Trial in the UK, I make up my own mind as far as my own health issues go.

So, as I have done many times in the past when faced with a decision, I wrote out the pros and cons.

FOR FLU VACCINATION (PRO)

AGAINST FLU VACCINATION (CON)

May help hubby, on O2 for COPD, avoid getting the flu

May trigger extended (2-4 wks) immune system reaction

Maybe bedridden for months if I get the flu

I have not had flu since contracting ME, actually not since I was a young woman

Chronically ill with a disease that began with a coxsackievirus infection

I am seldom ill from community-acquired infections, even when I was not homebound

I am chronically ill with a disease that began with a coxsackievirus infection, some specialists believe a subclinical enterovirus infection is at the root of ME

As Leslie Kernisan, MD MPH wrote in response to a question asking if flu vaccination making autoimmune diseases worse, “The CDC and other experts generally recommend that people with autoimmune diseases get the seasonal flu vaccine. This is because people with autoimmune conditions are at higher risk of having flu complications, and it’s estimated that the overall risk of being harmed by the flu is higher than the small risk of developing an autoimmune exacerbation related to the vaccine.

People with autoimmune conditions should not get the live attenuated flu vaccine. (But that one is not recommended in the US this year, anyway.)

I think there are certainly some doctors who believe it’s risky for people with autoimmune issues to get the flu shot. I was not able to find much scientific evidence regarding the risk, however, so I’m not sure we really know what the risk is.

I would recommend you discuss your questions regarding the likely benefits and risks of flu vaccination with your own doctors. You may want to discuss this question with a rheumatologist, as they may have a better understanding of the guidelines and research evidence on this topic.

Good luck!”

I respect Dr. Kernisan and so if she could find no contradictions for a person with a (presumed) autoimmune disease receiving an annual flu vaccination, I can’t argue with it.

I will be doing a 16-day Buddhist practice for my health starting this weekend. Not wanting a possible reaction to immune system triggering from the vaccine during this time of prayers and meditation, I will not get vaccinated until after the retreat finishes on November 5th.

I’ll let you all know if I have any sort of reaction to the vaccination. But what about you? Have you had a reaction to flu shots? Do you get an annual flu vaccination?

Penguins

Serenity For Spoonies #26

This is the next installment of photos I find particularly intriguing and/or relaxing and hope you do, too. If you don’t know what a spoonie is, here’s a short article that explains it.

 

sunrise
Sunrise over a misty lake by Jasper Graetsch.
waterfall
The waterfall almost looks frozen. Photo by Jack Finnigan.

 

Penguins
Penguins! Photo taken by Ian Parker.
sunset

Serenity For Spoonies #25

This is the next installment of photos I find particularly intriguing and/or relaxing and hope you do, too. If you don’t know what a spoonie is, here’s a short article that explains it.

birch forest reflection
A birch forest reflected in a calm lake. Photo credit to Johannes Plenio.

 

seashore
This cold seashore has some intriguing elements. Photo by Joakim Honkasalo.
sunset
Another gorgeous sunset. Photo by Jesse Echevarria.
Tuscan farmhouse

Serenity For Spoonies #24

This is the next installment of photos I find particularly intriguing and/or relaxing. If you don’t know what a spoonie is, here’s a short article that explains it.

 

Tuscan farmhouse
Looks like a Tuscan farmhouse, doesn’t it? Photo credit to Karol Kaczorek.
woods and path
Just on a long walk through the woods… Photo credit to Joshua Fuller.
ocean sunrise
Imagine yourself with a warm beverage watching the sun rise over the ocean. Jonas Jacobsson took this photo.
netflix-logo-print_pms

Netflix “Afflicted” Series Deliberately Misrepresents Chronic Illness

The stars of the new Netflix series, Afflicted, are up in arms about how their conditions were misrepresented. The documentary series follows six people living with chronic illnesses.

A Los Angeles-based documentary company, Doc Shop, which works with National Geographic, CNN, Discovery, A&E, AMC, and Travel channel, produced the series.

According to all of the people portrayed in the documentary, the producers promised them a compassionate look at chronic illness. Every participant in the series had to have a diagnosis from a physician and be determined mentally healthy by a behavioral health specialist before filming started.

The participants collectively responded in an article posted on Medium. Individually, others wrote blogs about their experience or posted a live YouTube video.

We were all told that we would be participating in a project that would show our lives and our struggles with illness through a “compassionate lens.” We participated because our diagnoses are misunderstood and stigmatized. We thought that revealing some of the most intimate moments of our lives would lead to greater public understanding. We hoped that with it might come investment in research to find biomarkers and better treatments. We never fathomed that we were participating in a project that would instead expose us and our communities to further ridicule and disbelief.

MediumThe Truth Behind Netflix’s ‘Afflicted’

I stopped watching the series after the first episode because it was so clear that the producers went for sensationalism over realism. They consistently showed the people suffering from severe conditions as mentally ill and having psychosomatic illnesses.

Jamison Hill, a writer with ME, wrote a blog post about his experience.  

One such episode was devoted to “Identity,” suggesting that those of us with chronic illnesses spend so much time in poor health we become consumed by the lifestyle and don’t know how to live any other way, which is a completely asinine point to make. It’s unfair to categorize people like this because they “become” their illness. If giving all of your surplus energy to try to make yourself better is “becoming” an illness, then sure we “become” it, but if we’re talking about finding some sort of clandestine enjoyment or comfort in living as a sick person because we don’t know how to live any other way, well, that’s one of the most idiotic things I’ve ever heard; that’s not us.

https://jamisonwrites.com/2018/08/20/netflix-and-hill-the-true-story-behind-afflicted/

Jake Sidwell, who has chronic Lyme disease, posted an hour-long YouTube video about the making of the show and how unfortunate the experience has been. In it, he discusses questions posed by people who saw the documentary. 


Scientists with deep knowledge of the research literature — including several from the Open Medicine Foundation’s “Community Symposium on the Molecular Basis of ME/CFS” at Stanford, which the film crew did shoot — were either not interviewed or their interviews ended up on the cutting room floor. Instead, Afflicted frequently relies heavily on the skeptical voices of “experts” who have no relevant professional or academic expertise in our diseases.

MediumThe Truth Behind Netflix’s ‘Afflicted’

“Acknowledging” skepticism doesn’t make people take us more seriously, especially when the evidence of their biological basis – both my abnormal lab results and the broader research – is purposefully excluded. There’s a big difference between acknowledging the skeptical perspective and, say, devoting three entire hour-long episodes to psychobabble sound bites about it, which is precisely what the producers did.

https://jamisonwrites.com/2018/08/20/netflix-and-hill-the-true-story-behind-afflicted/

Did you see Afflicted? What was your reaction to it?

hand reaching out of water

Looking For More Income Online

Many of my readers like the Serenity For Spoonies series of gorgeous peaceful scenery that I post from time to time. I like finding and posting them, too. 

Fortunately, I can schedule these picture posts to appear even when I’m not able to do anything else. Like during the past few weeks when I crashed harder than usual.

Like many of us with ME or other fatiguing illnesses such as MS or heart failure, I’m accustomed to spending a day or even two recovering my energy stores after an exhausting day. But this most recent relapse (I prefer relapse to the official name of post-exertional malaise) kept me in bed or lounging in the recliner longer than I experienced in quite a long time.

woman-lying-in-bed

Fortunately, there are safety nets for people like us. For example, Medicaid can pay for prescriptions and in some states, there are waiver programs that will provide extra support for bathing, dressing, grocery shopping, etc.  Meals on Wheels is another program that will give us at least one meal a day at a reduced rate.

My years in public relations taught me to look for good things even when something appears not so good, so the silver lining to this most recent relapse was that I had a chance to step back and think about this blog.

Although I’m still not settled on a specific way forward, I do want to incorporate some of the things I’m learning about making extra money.

We all know or can imagine how difficult it can be when we have no source of income from a working spouse, parents or something else. Many of us live close to the edge with Social Security Disability as our only income.

However, even though I’m enrolled in a Medicaid community waiver program, I still get tired of counting pennies, shuffling the due dates of bills so I had funds in the bank when they came due, and basically running out of money before my next Social Security check came in. 

dollar-sign

Obviously, if the government declares you disabled you cannot work a 40-hour week any longer. For many of us, even part-time work is too strenuous. This leaves working from home as about the only option open to someone who is disabled with a chronic illness.

So I started looking for ways people are making money by working at home. Some are too strenuous and/or impractical for people like me who suffer from brain fog, for example answering customer service calls. Others take too much time for little return, like responding to surveys.

woman-holding-fan-of-money

I kept finding sites that promised thousands of dollars each month–even millions each year–making money online. Many of these programs are basically multi-level marketing in which you set up a website or websites that entice others to sign up for the expensive program in which you enrolled.

So I fell for the marketing and signed up with a young man whose main promotion was to get his followers excited about fancy expensive cars and a digital nomad lifestyle. He frequently posted videos showing him and his young child in various spectacular places around the world. The promise was that you, too, could be doing this.

expensive-car

His way was a hard-driving, hard-selling method of getting you to sign up and then getting others to do the same thing. You made money from the initial signup and then every month your people remained in the program. He offered free training on how to make videos that would go viral and how to write sales copy that would get people to buy things you recommend. 

This was just not for me nor was it appropriate for someone who often has to step back for several days and not do any online work. He offered a money back guarantee, so I wrote to say the program was just not for me and I wanted a refund.

However, I did not qualify for a refund in his eyes because I didn’t stay in the program and do everything as he laid it out. I finally had to threaten to go public and say John Smith (not his real name) was stiffing a grandmother before he grudgingly refunded my money.

My next foray into online marketing was through a young woman who promised income and location freedom with blogging. That sounded great since I already had a blog.

Sue Smith (not her real name) had a largish following of women and at the time I was involved she had just moved overseas using her blog as her sole source of income.

There were examples galore on her website of how to develop what is called a personal brand. In other words, this woman used photos and stories of herself in different locales as the subject of blogs about the place she was in, where she ate and the clothes she wore.

Sue (not her name) was involved every day with members of her group and offered tons of positive reinforcement and support. Almost a polar opposite to the first guy.

She succeeded by getting sponsors for these blogs, like a clothing company, a restaurant or a tourism department. Of course, she also promoted getting others to sign up using a referral code that was unique to you. 

I learned quite a bit about making pretty websites and posts, but this still was too much work. I also didn’t like the constant self-promotion. Her focus on the personal brand just didn’t fit with my lifestyle.

After all, who in their right mind wants to follow someone who can’t leave the house more than a couple hours a week and spends the remainder of the time resting?

My next foray got me into the world of selling on Amazon. That is a whole different story that I will tackle in the next post.

What do you think of my experiences?

Have you tried any work at home schemes? (I’m using schemes like the British do and not with any connotations of something risky or underhanded as we Americans often think of a scheme.)