Finding Community and Support Through the RA Healthline App

Healthline has created such a positive network, community, and resource for those of us living with rheumatoid arthritis (RA) or rheumatoid disease (RD).

It’s been almost a month since the RA Healthline app launched and in this post I want to share my favorite features and why I am still excited about this growing community for anyone living with RA or RD.

If you haven’t joined yet, you must download the free app today!

FAVORITE FEATURES:

Live Chats

I talked about the daily live chats in my first blog post and they are still my favorite feature. If you haven’t checked it out yet, live chats occur in each of the different Groups at least five days each week. The chats are hosted by our RA Guide, Ashley, or by a Guest Co-Host such as myself. 

In fact, Thursday night, June 25, at 8pm ET/5 pm PT in the Diagnosis Group, I will be hosting a chat on the subject of RA diagnosis—Who Diagnosed Your RA? For me, it wasn’t a rheumatologist who initially said, “I think you have RA.” It was my hand surgeon. 

Groups

The groups themselves are my next favorite feature. This section is organized by tabs that lead you to ongoing discussions surrounding different categories. Not everything is about RA though. My favorite group is the “Escape from RA” group. Other favorites include the “Mental and Emotional Health”, “General Health”, and “Daily Life” groups. 

But that’s only 4 out of the 15 groups!! So much to choose from and so many discussions to explore. 

By entering a group, you will find conversation threads pertaining to the overall group topic. It’s easy to navigating through the threads, ask a question, answer a question, leave a comment, or simply offer words of support. 

Community

It’s not always easy to talk about your disease, to truly be open and honest. The community is growing every day and the conversations are rich and bountiful. Within the RA Healthline community, you will find people who totally “get it.” It’s a place you can be vulnerable and give comfort. Most importantly there’s always room for you to add your voice!!

THE IMPACT OF RA HEALTHLINE:

Have you ever wanted to easily find articles about RA. relationships, diet, exercise, symptoms, treatments, or more? The RA Healthline app will notify you of an article of the day each morning. Within the app, additional material from their main website are highlighted. It’s like having access to the Healthline website within the app itself.

Have you ever wanted to ask a question about RA or about dealing with friends who don’t understand? Here is where you can do that and receive responses from a broad community of people living with the disease. And you don't need to be tied to your computer to do so. The app goes wherever you go.

RECAP:

RA Healthline app offers different types of support all wrapped up in one location. In short, the app provides:

• Connection with real people living with RA
• Live chats covering all sorts of topics
• Informative Healthline articles and resources
• A place to give and receive advice and support
• Portability — It goes with you wherever you have your phone.
• Everything at your fingertips, literally

Are you looking for support and a community who understands? Download the free app here (Apple or android). Create an account. And jump right in!! I hope to meet you there!

RA Healthline: A New App Designed for the RA Community

This post is sponsored by Healthline, a partner of mine. I am so excited to be working with them to help get the word out about their new app, RA Healthline. This will be a great resource offering unique ways to make connections with the RA community. Download your free RA Healthline app today!

For many people, smart phones are their lifeline to friends, business, information, entertainment, and support. Hundreds of health-related apps have been developed to help us keep track of physical activity, food/meals, symptoms, mood, appointments, and more.

I’m excited to tell you about a new app, simply called RA Healthline, that is developed by Healthline with whom I have partnered to help get the word out as the app officially launches on June 1, 2020. 

The RA Healthline app is unique in that it features a combination of some of the best elements of a Facebook group, support group, discussion forum, live chats, and curated articles in a moderated, safe community. 

I have already been working with Healthline for several months to co-host group chats within their well-established MS Healthline app. So I know what kind of coolness you will find when you explore the RA Healthline app and help shape this unique RA community from the beginning.

RA Healthline Features:

Home: 

The Home tab looks a bit like your typical Facebook newsfeed. You get to see what new comments, posts, or questions have been posted within the community. 

Groups:

The Groups section is where you’ll find a list of categories like Relationships, Diagnosis, Symptoms, Work, Complications, Lifestyle, Medication, and more. The Groups section reminds me of traditional forums where members can interact with and support each other. Tap on a group to view the conversation threads and add to the discussion. You can ask a question, respond to a conversation, or share a story. 

Live Chats:

Alternating within different groups will be a daily “live chat” with our Guide Ashley or co-hosted by one of our special guests, including ME!! Keep your eyes out for the alerts. Our first chat will take place on Tuesday, June 9, 2020, at 8 PM ET in the General Group.

I will be hosting a live chat on Thursday, June 11, 2020, at 8 PM ET in the Navigating Healthcare Group. We'll be talking about "How to Make the Most of Your Rheum Visit."

Members:

Within the Members section, you can be custom matched with other members who share characteristics with you based on age, interests, and more. You can also view all the members, see whose online, and strike up a conversation.

Messages:

This section is where your one-on-one conversations will be stored. Think of this like your text message app within the RA Healthline app.

Discover:

The Discover section is where you can find all the best articles and expert resources related to RA from healthline.com. It’s like having the website show up inside the app. How cool is that?

RA Healthline app offers different types of support all wrapped up in one location. In short, the app provides:

• Connection with real people living with RA
• Live chats covering all sorts of topics
• Informative Healthline articles and resources
• A place to give and receive advice and support

Check it out and let me know what you think! Download the free app here and join the community today!

8 Tips For Surviving Your Next MRI

MRIs are fun! Wait, you haven’t heard that before? 

MRIs are dreaded torture chambers! Maybe that’s the way you feel about the tool which is ubiquitous with multiple sclerosis diagnosis and disease monitoring. 

Magnetic resonance imaging (MRI) uses electromagnetic fields and radio waves to create detailed images of the body, including myelin, inflammation, and neurodegeneration. MRI machines are LOUD and uncomfortable. The scans for MS can take anywhere from 45 minutes to 2.5 hours depending upon which parts of the central nervous system are being examined: brain, cervical spine, and/or thoracic spine.

It’s no fun to get an MRI — knock knock tap tap tap buzz buzz buzz tap tap tap — but it doesn’t have to be entirely unpleasant. Here are some strategies I’ve adopted over the past two decades to help me survive the torture chamber.

Music, music, music! As a professional musician, I have a vast assortment of soundtracks stored in my head which I “play” during the MRI scans. If I want to stay light-hearted, I might mentally play through some of my favorite horn concertos. If I want to mentally drift off with a more intense long haul, I might go with Mahler Symphony No. 5. Sometimes I might just play games and try to time songs with the estimated length of an individual scan. If the technician says, “this scan will last six minutes,” I break out a little Bohemian Rhapsody by Queen. 

Some MRI facilities have machines that can play music through headphones. If your facility offers this, you can create your own MRI playlist on your iPod with your favorite songs and plug it into the machine. You might want to go with calm, soothing sounds or pump up the volume with some classic 70s and 80s rock. Some facilities might ask you what Pandora station you’d like to listen to. Just don’t move to the beat or get your hips swinging and swaying. 

Dress comfortably. I can’t stress this enough. I usually wear sweat pants (no metal, warm and cozy) and a short-sleeve T-shirt. For the ladies, I recommend you go ahead and get comfortable — ditch the bra. If you are an underwire lady, you can’t wear the bra anyway because of the metal. Although tennis shoes are allowed, I usually take them off and wear socks just to keep my feet warm. 

You may be offered a blanket before the MRI. Take it. The room can get cold when you can’t move. I like to keep my hands under the blanket but my upper torso uncovered because it can also get a little warm inside the machine. Many MRI machines will have a little air blow across your face. That helps to keep you cooler and reduce feelings of claustrophobia.

Stay hydrated. In the days before the MRI, make sure that you are drinking enough water. It will help the MRI technician find a better vein for the gadolinium injection and reduce the chances you get “cotton mouth” during the procedure, which can become uncomfortable. Avoid coffee the morning of the MRI and be sure to empty your bladder multiple times before getting settled on the table for a couple of hours. 

Keep limber and reduce pain. If you don’t have a daily routine of stretching, start now. Keeping your muscles and joints relaxed and limber will help keep you more comfortable during an MRI scan. If you experience spasticity or pain, don’t forget to take your medication. Tell the technician if you need extra supports under your legs, cushion under pressure points, or other supports to make you more comfortable. 

Stay calm. It’s understandable to be nervous before and during an MRI scan. Talk to your doctor if you feel anxious or claustrophobic. Anti-anxiety medication may help you to relax. If at anytime during the scan you are uncomfortable, SPEAK UP! Let the technician know what the problem may be so that together you can find a solution. 

Some people even meditate or fall asleep during an MRI session. 

Keep eyes closed. Looking at the inner surface of the MRI machine right in front of your face can be disconcerting for some people. I like to keep my eyes closed so I take out my contacts ahead of time to avoid dry, sticky contacts afterward. I know people who take a thin handkerchief to lay over their eyes to help them relax during the MRI. 

Communicate. I’ll stress it one more time. If at anytime you become unduly uncomfortable — too hot, cold, anxious, need to shift the position of your legs, etc.— press the button you are given and talk to the technician. If you’d like your technician to let you know when you’re halfway through, let him know. If you’ve hung on until the end of a sequence when the MRI machine is quiet and need to get some good swallows in, just mention it so that the technician can wait until you’re good and ready to continue. 

(originally published on HealthCentral in 2018)

Impact of Comorbidity and Multiple Sclerosis

Living with one chronic disease, such as multiple sclerosis, can be challenging. Living with more than one chronic disease can make diagnosis and treatment difficult. Living with comorbidity can lead to disability, lower quality of life, delayed diagnosis, increased hospitalization, and increased risk of death for people living with MS.

Some comorbid conditions may be symptoms of MS, such as depression or anxiety, but others are unrelated to MS. Common comorbidities in multiple sclerosis include depression, anxiety, high cholesterol, high blood pressure, gastrointestinal disease, thyroid disease, and chronic lung disease. The subject of comorbidity is a personal one as I actively manage three of these comorbidities in addition to MS.

Mental health and MS

Mood disorders, such as depression, anxiety, and bipolar disorder, are more common in people with MS than in the general population. The prevalence of depression ranges from 36 to 54 percent in people with MS, according to the National MS Society, compared to 16 percent in the general population. Anxiety disorders affect approximately 36 percent with MS while bipolar disorder affects between 6.5 and 13 percent. These estimates are somewhat higher than what was found in a 2015 worldwide literature review and significantly higher than results of a 2018 retrospective analysis of claims data for patients living in the United States. 

Feelings of anxiety or depression may be symptoms of MS, might signal a relapse, or might relate to conditions that were diagnosed before MS. No matter the cause of these symptoms, it is important to discuss what’s going on with your doctors. Mental health conditions can go undiagnosed or untreated. 

Many neurologists are willing to prescription medication for a mood disorder, but others may refer you to a specialist instead. I have worked with a licensed clinical social worker (LCSW) to learn how to deal with various challenges I face related to mental health while medication prescribed by my neurologist helps to alleviate symptoms. 

Cardiovascular disease and MS

In the United States, the most common comorbidities in people with MS, based on claims data from 2006 to 2014, are high cholesterol and high blood pressure which affect between 26 to 30 percent of people with MS. Researchers found that claims for high cholesterol and high blood pressure were 39 and 25 percent, respectively, more likely among male patients compared with female patients with MS. However this contradicts results from a previous study that found hypertension, heart failure, and coronary heart disease were significantly less common in people with MS. 

Treatment of cardiovascular comorbidity is particularly important for people with MS as researchers have determined that high blood pressure and heart disease contribute to advanced brain atrophy and vascular comorbidity is associated with increased risk of disability progression. 

Lifestyle changes can help reduce the risk of heart disease. If you smoke, stop. Exercise and healthy eating can help to control high blood pressure. To lower cholesterol levels, eat a diet high in fiber, but low in cholesterol, saturated fat, and refined sugar. Stay active, increase physical activity, and maintain a healthy weight. If lifestyle changes alone are not enough, your doctor may prescribe medication to help control risk factors for heart disease.

Gastrointestinal disease and MS

In the US claims study mentioned above, gastrointestinal (GI) disease comorbidities were found in the claims of 18 to 21 percent of patients with MS. In general, these diseases were more common among women than men. The gastrointestinal diseases included were celiac disease, constipation, Crohn’s disease, diarrhea, dysphagia (difficulty swallowing), gastroesophageal reflux disease (GERD), irritable bowel syndrome, and ulcerative colitis. 

Several of these GI conditions double as symptoms of MS. If you experience any difficulties with bowel dysfunction, constipation, diarrhea, trouble swallowing, GERD, or other GI symptoms, please talk to your neurologist. You may be referred to a gastroenterologist for evaluation. While there is no single MS diet, some people with MS report that they feel better when they limit sugar and grains from their diet.

Thyroid disease and MS

Thyroid disease comorbidity was documented in 13 to 17 percent of the medical records for MS patients in the US claims database study. A prior systematic review estimated the overall prevalence of thyroid disease comorbidity in MS patients at 6.44 percent, ranging from 0 percent to 16 percent depending upon the specific condition. Examples of thyroid diseases included in the analysis were hypothyroidism, hyperthyroidism, Hashimoto’s thyroiditis, and Grave’s disease. 

Although thyroid disease has been identified as one of the more common comorbidities in people diagnosed with MS, the prevalence of thyroid disease prevalence of thyroid disease in people with MS is similar to that of the general population. Since one MS disease-modifying therapy, Lemtrada (alemtuzumab), is associated with thyroid disease, periodic thyroid function tests are required.

Impact of comorbidity on MS

Living with comorbidity, or having more than one health condition to manage, negatively impacts a person with MS in several ways. It can lead to greater physical disability and quality of life. The person with MS may have more symptoms to deal with which can complicate treatment decisions. Increased risk of death is the ultimate reason to try to reduce comorbidity in people with MS.

What can you do?

If you are coping with MS and one or more additional health conditions, it’s vitally important to seek proper medical treatment and to make healthy lifestyle choices. The choices you can make to improve your chances of living well with MS are very similar to the healthy actions suggested to reduce cardiovascular disease. 

Healthy steps you can take include:

• Stay physically active and move your body as you can
• Stay mentally and socially active as well
• Stop smoking
• Limit alcohol consumption
• Focus on eating proper nutrition
• Eliminate vitamin deficiencies
• Maintain a healthy weight
  Stay hydrated
• Get adequate sleep
• Reduce stress 
• Take time for yourself 
• Seek routine medical care to stay on top of your health

(originally published on HealthCentral.com in 2018)

An Interview with Body Builder David Lyons

Competitive bodybuilding is one way that David Lyons conquers multiple sclerosis (MS). Diagnosed with MS in 2006, David is motivated to educate and inspire people living with the disease to focus on fitness and nutrition and to develop a mindset that anything is possible.

In 2012, with his wife Kendra Lyons, R.N., David founded the MS Fitness Challenge (MSFC) charity to help bring his message worldwide. David has received the Milestone Award from the National MS Society, and in 2015, he was presented the Health Advocate Lifetime Achievement Award by Arnold Schwarzenegger.

He’s also the author of “David’s Goliath: Winning the Battle Against All Odds” (2013) and “Everyday Health and Fitness with Multiple Sclerosis: Achieve Your Physical Wellness While Working with Limited Mobility” (2017). He’s working on a new show called “Pumped: The Muscle Hustle” with Lou Ferrigno.

He spoke with HealthCentral about his experience.

HealthCentral (HC): What were the initial symptoms that led to your diagnosis?

David Lyons: MS caught me off guard in the gym. Initially I experienced severe pain, numbness, tingling, and lack of coordination in my left arm while working out. Within a few weeks, the symptoms radiated throughout my body and moved into my legs. I became bedridden for months during the pre-diagnosis and diagnosis stage. When I was finally hospitalized, I was almost paralyzed from the chest down.

HC: What did you most fear when you learned of your diagnosis?


David: After a five-day stay in the hospital, the symptoms were still so severe that I felt I could not continue as a bodybuilder, or might not step foot in a gym again. The neurologists said that MS would quickly make me wheelchair bound due to the tremendous nerve damage I experienced during that initial attack. I began to fear that would become my reality. Twelve years later and almost 60 years old, I’m still not using a wheelchair.

Read this post in its entirety:

Building Your Fitness Future With MS: An Interview with David Lyons

How to Reduce the Pain of Injections

Self-injectable medications

Several of the medications used to treat multiple sclerosis are injectable drugs. The requirements for storage and administration differ for each drug, but here are some universal tips that will help reduce the pain of the injections. Please note that if you have questions or difficulties with a specific drug, call the drug company’s helpline or ask your own MS nurse for help.

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Room temperature medication

Medications which must be kept in the refrigerator for storage are often much less painful upon injection when at room temperature. Before injecting, remove one pre-filled syringe from the refrigerator and leave the syringe out for at least 30 minutes before using. Or alternatively, while still in the wrapper, hold it in your armpit to bring it to body temperature.

Read this post in its entirety:

7 Tips To Reduce the Pain of Injections