chronic illness and disability

A Change.org Petition for Musicians U2 to Bring Awareness of Meniere’s Disease

 

As many of you know, I have an inner ear disorder that forced me to stop working and eventually have to go on disability because the specialists do not have the tools to help me.

I am, sadly, far from alone in living and dealing with a disability and doctors being unable to help me get better and go back to leading a productive life.

To say that funding and research for inner ear disorders are woefully lacking is an understatement. As those with vestibular disorders know, the public does not realize how many people of all ages are afflicted with inner ear disorders.

I also believe that it will take the involvement of A+++ famous people to help bring a much greater awareness and understanding about vestibular diseases. This, in turn, would bring about more funding and research. One has only to think about the effect of Jerry Lewis and the Muscular Dystrophy Telethon that so many of us watched. Or Michael J. Fox and Parkinson’s disease. Or Christopher Reeve and spinal cord injury.

While we don’t know why Lewis became involved with MDA, with Fox and Reeve it was personal. Fox has Parkinson’s and Reeve became paralyzed with a spinal cord injury as the result of being thrown from his horse at an equestrian event. The funding and research that has been made possible due to their involvement and activism is immeasurable.

There is a petition on Change.org right now (March 9, 2015) that is asking U2 to help bring awareness to Meniere’s disease. This is the request from the petition:

We are respectfully asking you Bono and your U2 band mates to consider helping us to raise awareness about this debilitating disorder with a simple statement before you sing your song “Vertigo” during your 2015 concert tour. A simple:

 “We need to find a cure ‘now’ for the millions who suffer lives filled with vertigo and deafness caused by Meniere’s Disease.” would work wonders for us.

I hope you will take a few moments of your time to check out the petition, add your name and share this petition so that we can hopefully get A+++ famous people involved and help bring awareness to vestibular disorders.

I hope that one day we can talk about how people are being helped by the results of increased funding, research and discoveries. I also hope and look forward to the day that we can talk about how little people’s “quality of life” has been affected and how immeasurable the help of A+++ famous people has been.

Thank you.

Let’s Talk Mental Health on January 28th

 

There is never a wrong time to talk about mental health. (Even when you’re doing a post about mental health and trying to not sound like an advertisement for Bell.)

This year in Canada, January 28th is Bell Let’s Talk Day. (Bell is part of BCE Inc. and is Canada’s largest communications company.) Bell Let’s Talk is a multi-year charitable program dedicated to mental health and Bell has committed over $67.5 million to support a wide range of mental health organizations, large and small, from coast to coast to coast.

The 2014 Bell Let’s Talk Day raised $5,472,585.90 more in funding for Canadian mental health, all  from 109,451,718 tweets, texts, calls and shares.

One in 5 Canadians will experience a mental illness, yet 2 in 3 of those who struggle will not seek treatment options for fear of judgment or rejection. They may not tell anyone at all that they have a problem because of the stigma. These five ways, developed with Dr. Heather Stuart of Queen’s University, the world’s first chair in anti-stigma research, show how you can help end the stigma of mental health.

Language matters

Words can help…but they can also hurt. Pay attention to the words you use.

How you can help

  • Explain to friends and colleagues who use words like “psycho” or “nut” without thinking that their comments may be hurtful and provide an alternative view.

Educate yourself

Myths exist about mental illness that contribute to stigma. Learn the facts.

How you can help

  • Learn more, know more. Be knowledgeable and help fight stigma with facts.

Be Kind

Small acts of kindness speak volumes.

How you can help

  • Don’t stand by if someone is being labelled or bullied.
  • Treat a person who has a mental illness with the kindness and care you give to people with other illnesses through a friendly smile, a helping hand, a phone call or visit.

Listen and ask

Sometimes it’s best to just listen.

How you can help

  • Don’t trivialize someone’s illness. Instead, say: “I’m sorry to hear that, it must be a difficult time. Is there anything I can do to help?”

Talk about it

Start a dialogue, not a debate.

How you can help

  • Break the silence. Talk about how mental illness touches us all in some way directly or through a friend, family member or colleague. Stories of lived experience are the best way to help eradicate stigma.
  • Support mental health and anti-stigma programs in your community.

On January 28th, how can you help?

If you live in Canada, Bell will donate 5¢ more to mental health initiatives for every:

  • Text message sent*
  • Mobile & long distance call made*
  • Tweet using #BellLetsTalk
  • Facebook image share

And because there is an *:

By a Bell or Bell Aliant customer only. Regular long distance and text message charges apply

If you don’t live in Canada you can still participate by:

  • tweeting #BellLetsTalk
  • sharing the Bell Let’s Talk Day image on Facebook (found on the toolkit page)
  • downloading the Bell Let’s Talk toolkit
And, most importantly, starting a conversation about, and helping end, the stigma around mental illness.

Dentists, Epinephrine in Novacaine and Racing Hearts and Jitters

I had two dentist appointments this past week. It was for teeth cleaning. Because of my everyday dizziness, I kept putting it off (and off and off…).

I finally made the appointment and it was agreed that the cleaning would be split up into two appointments and that they would use freezing to make it easier on me and on them.

Sounds good so far.

I go to my first appointment and the other dentist in the practice puts the freezing in my mouth and goes away. And then, my heart started racing and I was very jittery for a few minutes afterwards. It felt a lot longer because we were waiting for the freezing to take affect. I had that happen to me once before and wondered if it might be the freezing but it was faint and lasted for only a few seconds so I thought it could easily be nerves. I also have a heart that likes to skip beats but have worn holter monitors and have been told everything is fine.

The reason for the heart racing and jitters is because of the epinephrine that is part of the freezing dentists use. Epinephrine, also known as adrenaline, is used because it constricts the blood vessels near your tooth, allowing the dentist to work longer and only allows a small amount of the local anesthetic to enter your body.

For my second appointment, we used a different freezing solution without epinephrine and not one problem. No jitters or nervousness and no racing heart which meant no anxiety. The only problem I may have had was the numbness going away sooner than normal because of using a different type of freezing solution. If that happened, my dentist would have given me more freezing to get through the rest of the appointment.

I didn’t need to have more. My appointment was delayed by about 45 minutes because the fire alarm went off when I was being given the freezing. I was just starting to feel things again but I was almost done so didn’t bother getting more.

I don’t think I’ve suddenly become allergic to it because, except for the one instance from a couple of years ago, it’s never bothered me. But, there was more freezing used because the whole top half of my mouth was frozen. My dentist said that shouldn’t be why I had the racing heart and jitters but it wasn’t him that gave me the freezing the first time, it was the other dentist at the practice so I don’t know.

When you’re having half of your mouth frozen, it’s a lot of novacaine. My dentist is also very good at using only enough freezing necessary and it’s usually gone about an hour after the appointment.  My mouth stayed numb for about 5 hours afterwards. It’s also possible that the needle entered a small blood vessel and some of the epinephrine entered the blood stream which would also produce an increased heart rate so, again, I don’t know.

If you have had this problem or have a pre-existing health problem, talk with your dentist. Here’s a link to an article called Can Dental Anesthetic Really Make Your Heart Beat Faster? that you can take with you to your next dental visit if this is something that concerns you.

 

 

It’s Heat Advisory Time Part 2: FAQ page about Extreme Heat

 

 

(Part 1 is links to the Centers for Disease Control and Prevention page and hot weather tips. Part 2 is frequently asked questions about extreme heat along with the warning signs and how to help people with heat-related illnesses.)

The FAQ page about Extreme Heat has answers to commonly asked questions about extreme heat. Below are some of those questions and answers. Visit the page to learn other ways to help you deal with extreme heat.

 

What happens to the body as a result of exposure to extreme heat?

  • People suffer heat-related illness when the body’s temperature control system is overloaded.
  • The body normally cools itself by sweating. But under some conditions, sweating just isn’t enough.
  • In such cases, a person’s body temperature rises rapidly.
  • Very high body temperatures may damage the brain or other vital organs.

Who is at greatest risk for heat-related illness?

  • Infants and children up to four years of age
  • People 65 years of age and older
  • People who are overweight
  • People who are ill or on certain medications

What is heat stroke?

***Heat stroke is the most serious heat-related illness and can cause death or permanent disability if emergency treatment is not provided.***

It occurs when the body becomes unable to control its temperature: the body’s temperature rises rapidly, the sweating mechanism fails, and the body is unable to cool down. Body temperature may rise to 106°F or higher within 10 to 15 minutes.

What are the warning signs of a heat stroke?

  • An extremely high body temperature (above 103°F)
  • Red, hot, and dry skin (no sweating)
  • Rapid, strong pulse
  • Throbbing headache
  • Dizziness
  • Nausea
  • Confusion
  • Unconsciousness

What should I do if I see someone with any of the warning signs of heat stroke?

***If you see any of these signs, you may be dealing with a life-threatening emergency. Have someone call for immediate medical assistance while you begin cooling the victim.***

  • Get the victim to a shady area.
  • Cool the victim rapidly, using whatever methods you can. For example, immerse the victim in a tub of cool water; place the person in a cool shower; spray the victim with cool water from a garden hose; sponge the person with cool water; or if the humidity is low, wrap the victim in a cool, wet sheet and fan him or her vigorously.
  • Monitor body temperature and continue cooling efforts until the body temperature drops to 101-102°F.
  • If emergency medical personnel are delayed, call the hospital emergency room for further instructions.
  • Do not give the victim alcohol to drink.
  • Get medical assistance as soon as possible.

What is heat exhaustion?

Heat exhaustion is a milder form of heat-related illness that can develop after several days of exposure to high temperatures and inadequate or unbalanced replacement of fluids.

What are the warning signs of heat exhaustion?

  • Heavy sweating
  • Paleness
  • Muscle cramps
  • Tiredness
  • Weakness
  • Dizziness
  • Headache
  • Nausea or vomiting
  • Fainting

What steps can be taken to cool the body during heat exhaustion?

  • Drink cool, nonalcoholic beverages
  • Rest
  • Take a cool shower, bath, or sponge bath
  • Seek an air-conditioned environment
  • Wear lightweight clothing

What are heat cramps and who is affected?

***If you have heart problems or are on a low-sodium diet, seek medical attention for heat cramps.***

  • Heat cramps are muscle pains or spasms – usually in the abdomen, arms, or legs – that may occur in association with strenuous activity.
  • People who sweat a lot during strenuous activity are prone to heat cramps. This sweating depletes the body’s salt and moisture. The low salt level in the muscles causes painful cramps.
  • Heat cramps may also be a symptom of heat exhaustion.

What should I do if I have heat cramps?

If medical attention is not necessary, take the following steps:

  • Stop all activity and sit quietly in a cool place.
  • Drink clear juice or a sports beverage.
  • Do not return to strenuous activity for a few hours after the cramps subside because further exertion may lead to heat exhaustion or heat stroke.
  • Seek medical attention for heat cramps if they do not subside in 1 hour.

Can medications increase the risk of heat-related illness?

The risk for heat-related illness and death may increase among people using the following drugs:

  • Psychotropics, which affect psychic function, behavior, or experience (e.g. haloperidol or chlorpromazine)
  • Medications for Parkinson’s disease, because they can inhibit perspiration
  • Tranquilizers such as phenothiazines, butyrophenones, and thiozanthenes
  • Diuretic medications or “water pills” that affect fluid balance in the body

 

 

It’s Heat Advisory Time Part 1: Hot Weather Tips

 

(Part 1 is links to the Centers for Disease Control and Prevention page and hot weather tips. Part 2 is frequently asked questions about extreme heat along with the warning signs and how to help people with heat-related illnesses.)

It’s hot, the humidity is rising and heat advisories are being issued for many. This link to the Centers for Disease Control and Prevention page has information for everyone as well as more specific information for people over 65, children and infants, people with chronic medical conditions, low income, outdoor workers and athletes.

These are the tips from their Hot Weather Tips page. We know them, or many of them, but it never hurts to read them again.

The best defense is prevention. Here are some prevention tips:

  • Drink more fluids (nonalcoholic), regardless of your activity level. Don’t wait until you’re thirsty to drink. Warning: If your doctor generally limits the amount of fluid you drink or has you on water pills, ask him how much you should drink while the weather is hot.
  • Don’t drink liquids that contain alcohol or large amounts of sugar–these actually cause you to lose more body fluid. Also, avoid very cold drinks, because they can cause stomach cramps.
  • Stay indoors and, if at all possible, stay in an air-conditioned place. If your home does not have air conditioning, go to the shopping mall or public library–even a few hours spent in air conditioning can help your body stay cooler when you go back into the heat. Call your local health department to see if there are any heat-relief shelters in your area.
  • Electric fans may provide comfort, but when the temperature is in the high 90s, fans will not prevent heat-related illness. Taking a cool shower or bath, or moving to an air-conditioned place is a much better way to cool off.
  • Wear lightweight, light-colored, loose-fitting clothing.
  • NEVER leave anyone (THIS INCLUDES ANIMALS) in a closed, parked vehicle.
  • Although any one at any time can suffer from heat-related illness, some people are at greater risk than others. Check regularly on:Visit adults at risk at least twice a day and closely watch them for signs of heat exhaustion or heat stroke. Infants and young children, of course, need much more frequent watching.
    • Infants and young children
    • People aged 65 or older
    • People who have a mental illness
    • Those who are physically ill, especially with heart disease or high blood pressure
  • Visit adults at risk at least twice a day and closely watch them for signs of heat exhaustion or heat stroke. Infants and young children, of course, need much more frequent watching.

If you must be out in the heat:

  • Limit your outdoor activity to morning and evening hours.
  • Cut down on exercise. If you must exercise, drink two to four glasses of cool, nonalcoholic fluids each hour.  A sports beverage can replace the salt and minerals you lose in sweat. Warning: If you are on a low-salt diet, talk with your doctor before drinking a sports beverage. Remember the warning in the first “tip” (above), too.
  • Try to rest often in shady areas.
  • Protect yourself from the sun by wearing a wide-brimmed hat (also keeps you cooler) and sunglasses and by putting on sunscreen of SPF 15 or higher (the most effective products say “broad spectrum” or “UVA/UVB protection” on their labels).

 

Chronic Illness And Disability Links

Image via clientsfirst-us.com

When you have a disability or are living with a chronic illness, you know there are many myths and preconceptions that people believe. Disability Sanctuary has listed myths and facts to help everyone be informed and break some stereotypes.

It’s the middle of winter and depression and seasonal affective disorder hits so many of us. Jenny Lawson a.k.a. The Bloggess wrote about different ways to help yourself and reminds you to not be ashamed that you have depression or ask for help. It’s as legitimate an illness as any physical illness you would see a doctor for advice and treatment.

People need wheelchairs for different reasons. Stop questioning them! Just because they don’t look like they need a wheelchair or they are sometimes able to walk, doesn’t mean they don’t need one.  (P.S.  Don’t read the comments.)

Many people with disabilities and chronic illness have caregivers. If you are a caregiver or know someone who is, the web site Caregivingcafe.com may help.

And this video has nothing to do with disability or chronic illness but each time I watch it, it makes me smile. Kia the Jack Russell terrier is looking for a tennis ball and seems to be enjoying the snow way more than most humans this winter.