Celebrate Life · Chronic Illness · Health and Wellbeing · Medical · Men & Womens Health · Mental Illness · Self-Care

Taking Medication: A Small Price to Pay

by Elizabeth Drucker

Medically Reviewed by: Debra Rose Wilson, Ph.D., MSN, R.N., IBCLC, AHN-BC, CHT

Taking medication every day can be tiring and frustrating. But when it comes to living a healthy life, accepting this support is an invaluable step.

When I was 14 years old, sobbing uncontrollably in classes and during cheerleading practice, a psychiatrist scribbled out a prescription for Prozac. I paced through the aisles of the pharmacy, flipping through copies of Vogue and smelling the bottles of shampoo while I waited for the pharmacist to spill the capsules into a bottle. 

I knew something was “wrong” with me, but I wasn’t convinced swallowing these pills could make me feel better. I did know I was sad — so sad that it was agonizing to tumble out of my bed and make my way to the bus stop.

Finding what worked for me

Throughout high school, I cycled through the offices of many different psychiatrists. I was always looking for the next pill that could fix whatever was wrong with me. 

After I got over the initial shock of needing to rely on psychiatric medications, I started to see these pills as hopeful objects that would bring me some relief.

Each new psychiatrist and each new medication change brought new hope that I would get better. The doctors were encouraged that we would find the right medication and that my life would become more manageable. 

Then, during my senior year of high school, I was diagnosed with bipolar disorder. And with that came lithium, pills that are amazing at evening out my moods. So, now I live the lithium lifestyle. 

I have to remain vigilant about what my body is telling me because if the level of lithium in my blood gets high enough, I could get very sick. I’ve spent nights sleeping in emergency room beds because the lithium level became toxic and I needed fluids to rehydrate me. 

Even still, there’s no denying that this medication has saved my life.

It’s rescued me from some of the deepest, darkest depressions — those times when I felt so broken and raw that I was not sure if I could go on. Lithium has sucked the depression out of my marrow and allowed me to have more of a life. 

It’s clear that I need these chemicals to function. And I have a feeling that I will be taking lithium for a very long time, maybe even for the rest of my life. 

But I can handle that. I am just grateful that lithium exists, that I can swallow a few capsules and be back on track to regaining myself.

The ups and downs

However, despite its success, there are some nights when I’m so tired that I’m tempted to go to bed without taking my pills. I don’t want to be reminded that I’m sick and that I’m different from all of my friends. I doubt they’re reliant on pills just to survive. 

But then, I see flashbacks: me pacing through the corridors of the psych ward; me standing at the medication counter while nurses pour tablets and capsules into little cups; me rocking back and forth on my bed, hoping that I can somehow get some relief from my depression. 

So I stumble to the bathroom sink, fill up a large glass of water, and then bring it to my bed. I spill my cocktail of tablets and capsules onto my comforter and start taking them. 

I remind myself that these pills are a collection of chemicals that allow me to function, to get through the day without being interrupted by the manic or depressive symptoms of my bipolar disorder.

Taking pills has become a part of every day. And, for me, every day begins and ends the same way: with me taking the pills my psychiatrist has prescribed to keep my bipolar illness at bay. 

Accepting the downsides 

I think you know by now that, for me, taking my pills is not optional. The consequences are very real and very scary. 

My medication keeps the depression at bay. It keeps me on the other side of that locked psych ward door, a place I don’t want to be. My medication allows me to live just like those who don’t need medication — so I can go to college and even get through grad school.

Even though I know all of this, it doesn’t mean I’m thrilled that I’ll be relying on psychiatric medication for the rest of my life. Of course, I worry about the long-term consequences on my body.

For example, I know that lithium can be hard on the kidneys. The medication that does so much for my emotional state can also make me nauseous with trembling hands. And it’s very embarrassing when I’m at a restaurant with friends and my hands tremble every time I reach over to put some food on my plate. 

Someone very close to me passed away because he refused to be treated for his own mood disorder. I think of him when I’m reluctant to take my pills. 

I know this person in my life didn’t want to take psychiatric medication because of the stigma of mental illness. I feel it myself when I go to the pharmacy to pick up my lithium. I still whisper the names of the medications I’m picking up so nobody will think I’m “crazy.” 

The bottom line

Psychiatric medications are effective. I don’t care if I have to experience side effects because anything is better than depression to me. My pills have given me my life back. 

I can’t say it’s easy to manage those side effects when they have me sitting in the emergency room getting fluids, but I don’t want to spend my days in bed, crying and isolated.

Depression is one of the most painful things I’ve ever gone through and I’m so grateful my medications exist to bring me back to the real world. I will keep taking them because I want to feel better, and this is how I can.

The article looks at a person’s life and how they manage their illness and medication. I can say without a doubt, that taking your medication as prescribed is the best way to manage your illness. 

Melinda

Reference:

Blogging · Celebrate Life · Chronic Illness · Health and Wellbeing · Men & Womens Health · Mental Illness

A Day In The Life Of A Latvian Mom Interviews Me

Ilze and I have become fast friends. We share many of the same interests and she’s also very wise. Her posts always entertain or teach me something new. Please overlook the mistake I made when I said “Most of my post…..” I don’t write for sympathy. Thank you Ilze for digging deep and sharing with the community.

#5: From Followers to Friends – Melinda from lookingforthelight.blog

I’m so happy to have Melinda from Looking for the Light as a wonderful supporter in the blogging community. Although we haven’t known each other for long, her kindness, warmth, and genuine encouragement always shine through in her thoughtful comments. If you haven’t already, I highly recommend visiting her blog, where she shares beautiful insights … Continue

Melinda

Celebrate Life · Chronic Illness · Health and Wellbeing · Medical · Men & Womens Health

December Awareness Months & Days

Click on the link at the bottom of the post to see the entire list for December.

Awareness Months

HIV/AIDS Awareness Month

National Drunk & Drugged Driving (3D) Prevention Month

National Human Rights Month

Safe Toys and Gifts Month

Seasonal Affective Disorder Awareness Month

Universal Human Rights Month

World Twin To Twin Transfusion Syndrome Awareness Month

Worldwide Food Service Safety Month

Awareness Days

Rosa Parks Bus Seat Refusal Anniversary – December 1

World AIDS Day – December 1

Giving Tuesday – 1st Tuesday after Thanksgiving

International Day of Persons with Disabilities – December 3

International Volunteer Day – December 5

Human Rights Day – December 10

International Animal Rights Day – December 10

Bill of Rights Day – December 15

One important awareness day for me is Giving Tuesday when many charities have donors who will double or triple your donation. I make all of my yearly donations on that day to help the money stretch further.

Melinda

Reference:

https://www.goodgoodgood.co/articles/december-awareness-days-months

Celebrate Life · Chronic Illness · Health and Wellbeing · Medical · Men & Womens Health · Mental Illness

2024 Must-Read Books on Bipolar Disorder

By Natalia Lusinski
Medically Reviewed by
Seth J. Gillihan, PhD
Last Updated: 22 Oct 2024
Reading memoirs and nonfiction about bipolar disorder helps connect with those living with this brain-based condition, whether you have it or love someone who does. By Natalia Lusinski
When it comes to bipolar disorder, sometimes it may be difficult for loved ones to understand what the person is experiencing. While they often view it through the lens of caregiving, they may not grasp the individual’s personal perspective.That’s where these books come in. They’ll help you feel less alone, whether you’re the one who has bipolar or know someone who does, like a friend, your partner, a parent, a coworker, a neighbor, a child, or anyone else in your social circle.We rounded up these 10 must-read books on bipolar from this year, perfect for personal reading or as a thoughtful gift for someone who could benefit from them.
1. Daddy’s Magical Rainbow – Having a Parent With Bipolar DisorderWhen a parent has bipolar disorder, it can be challenging for a child to understand the emotional ups and downs that come with the mental health condition. In Daddy’s Magical Rainbow – Having a Parent With Bipolar Disorder, author Sarah P. Foster aims to help children ages 4 to 11 better understand bipolar, though it’s also intended for readers of all ages.The story follows a little girl whose dad has bipolar disorder. She learns that “it’s the bipolar talking” — helping her realize it’s not her “fault” when her dad acts in certain ways, whether he’s angry, quiet, manic, or experiencing other emotions. Off the page, Foster is a special education teacher with 30 years of experience working with children. She also grew up in a home environment that was affected by mental health challenges. The illustrations add a lot of heart to the story and come with a unique touch. The illustrator, Lucie Pedersen, is only 10 years old, which likely explains why her artwork so naturally draws readers into the narrative. 
2. An Impossible Life: A True Story of Hope and Mental Illness An Impossible Life: A True Story of Hope and Mental Illness, by Rachael Siddoway and Sonja Wasden, is an award-winning bestseller highlighting how bipolar disorder can affect anyone — it does not discriminate. The book follows Wasden’s journey after being admitted to a psychiatric hospital — against her will — by her husband and father when she was 35 years old. On the outside, her life seemed idyllic: She was a mother of three living in the suburbs with her successful husband. However, behind closed doors, she was battling with intense symptoms of bipolar disorder, including manic and depressive episodes, as well as delusions. The book offers hope to those living with bipolar or those who know someone affected by it. Since her experience, Wasden has become a dedicated mental health advocate. Oprah Winfrey even participated in one of her virtual mental health book club discussions to help inspire female inmates at the world’s largest women’s prison.
3. The Bipolar Therapist: A Journey From Madness to Love and Meaning
The Bipolar Therapist: A Journey From Madness to Love and Meaning was written by Marcia Naomi Berger, LCSW. In this memoir, Berger is open and honest about her time spent in a psychiatric ward, particularly from the unique perspective of being a therapist who became a patient in the psych ward. Like anyone else, she had to confront the stigma and shameassociated with bipolar disorder. Through her story, we learn how this experience ultimately made her a more compassionate therapist. 
“Marcia Naomi Berger’s first-person account of her journey and transformation is courageous,” states Francis G. Lu, MD, professor emeritus in the department of psychiatry and behavioral sciences at UC Davis, in the editorial reviews. “As she writes, ‘Someone with mental illness is much bigger and more complex than their diagnosis.’”

4. Hogbook and Lazer Eyes 
Hogbook and Lazer Eyes is a graphic novel memoir by writer, actor, and stand-up comedian Maria Bamford and her husband, artist Scott Marvel Cassidy. The story is based on their unique courtship — told from the point of view of their pugs — and how they met on the dating site OkCupid, using the names “Hogbook” and “Lazer Eyes.” 
As it turns out, they had more in common than they initially thought: They both have bipolar 2 disorder. Whether you have bipolar or have been (or are) in a relationship with someone who does this heartwarming and funny book is sure to resonate.

5. Devout: A Memoir of Doubt
In Devout: A Memoir of Doubt, author Anna Gazmarian not only reflects on living with bipolar 2 disorder but also her struggles with spirituality. Raised in an evangelical household, Bazmarian’s 2011 diagnosis at age 18 led to a crisis of faith as well. Now 31 and living in Durham, North Carolina, where she works as an outreach coordinator for The Sun Magazine, a national literary publication, Gazmarian spoke with bpHope about her memoir earlier this year. “The longer I’ve had my diagnosis, and the longer I’ve sought treatment, the more I’ve learned to cope with having it be only part of my identity,” Gazmarian says, adding that opening up about her bipolar diagnosis and its impact has been a healing process. She hopes her story will inspire others. 

6. Bipolar, Not So Much: Understanding Your Mood Swings and Depression
Whether someone is newly diagnosed with bipolar disorder or has been living with the diagnosis for some time, this book, Bipolar, Not So Much: Understanding Your Mood Swings and Depression, offers valuable insights. Written by Chris Aiken, MD, a psychiatrist and assistant professor at New York University and Wake Forest medical schools, along with James Phelps, MD, emeritus psychiatrist, Samaritan Mental Health in Corvallis, Oregon, the book draws on their medical expertise to help readers understand the complexities of depressionand how to manage and cope with it. The authors also emphasize that bipolar disorder is nota one-size-fits-all diagnosis. They explore various treatment approaches, acknowledging that different methods work for different people. 

7. Be There: My Lived Experience With My Sister’s Bipolar Disorder
Be There: My Lived Experience With My Sister’s Bipolar Disorder tells the story of author Linsey Willis, the younger sibling and caregiver to her sister Betsy, who has bipolar disorder. Betsy’s diagnosis at 21, despite being an Ivy League-educated woman, came as a shock and drastically changed the course of her life. The book not only draws readers into Linsey and Betsy’s experiences but also resonates with anyone who has a sibling or loved one living with bipolar. At its core, the story carries an important message of resilience and hope

8. Living Well With Bipolar Disorder: Practical Strategies for Improving Your Daily Life
In Living Well With Bipolar Disorder: Practical Strategies for Improving Your Daily LifeDavid J. Miklowitz, MD, professor of psychology at the UCLA Semel Institute, offers practical strategies for managing life with bipolar disorder. He addresses common stressors to avoid, how to cope when they arise, and ways to handle mood swings effectively. 
The book covers a wide range of topics, from managing depression, mania, anxiety, and irritability to navigating daily routines such as sleep, relationships, and work. It also explores maintaining physical health, managing substance use, and making the most of medicationsand therapy for long-term mood stability.
“Dr. Miklowitz, an acclaimed authority in the treatment of mood disorders, provides clear and valuable suggestions for how to navigate a seemingly unnavigable condition,” Kay Redfield Jamison, PhD, professor of psychiatry and behavioral science at Johns Hopkins University School of Medicine, writes in an editorial review. 

9. Crazy… Or Something Else Entirely: A (Mostly) Secret Journey With Bipolar Disorder 
Jillian Dumond’s Crazy… Or Something Else Entirely: A (Mostly) Secret Journey With Bipolar Disorder is a heartfelt and humorous memoir that offers a candid look at how bipolar disorder has impacted her life, particularly in areas like dating and relationships. Written in a conversational style, Dumond invites readers into her world, sharing personal experiences that are both relatable and engaging. 
What makes the book even more compelling are the contributions from her family and friends, offering insights into bipolar disorder from a caregiver’s perspective. Through these multiple viewpoints, the book not only provides a deeper understanding of living with bipolar but also highlights the importance of support and empathy from loved ones.

10. The Social Rhythm Therapy Workbook for Bipolar Disorder
The Social Rhythm Therapy Workbook for Bipolar Disorder is written by Holly Swartz, MD, professor of psychiatry at the University of Pittsburgh, with a foreword by Ellen Frank, PhD, distinguished professor emeritus at the same university. In this workbook, Dr. Swartz explains how social rhythm therapy can help individuals with bipolar disorder reset their internal body clock, or circadian rhythm. By stabilizing daily routines and rhythms, this approach can reduce bipolar symptoms, lower stress, and support better mood management. The book offers practical tools for applying these strategies in everyday life to promote emotional stability

ABOUT THE AUTHOR

Natalia Lusinski
Natalia Lusinski is an editor and writer for bpHope and a wellness and lifestyle writer and editor, covering everything from health to travel to personal finance topics. Her work can be seen in several publications, including Business InsiderYahooForbesInsight Timer, and the L.A. Times. She spent several years living abroad and is currently working on a travel/grief memoir. (If anyone happens to be in Portugal, she’d love a pastel de nata.) Back in L.A., she runs a popular pizza Meetup and is still trying to find her favorite slice.

Her list looks very interesting and helpful.

Melinda

Celebrate Life · Chronic Illness · Health and Wellbeing · Medical · Men & Womens Health · Mental Health

Blogger Highlight-SOLONGASICANBREATHE

Thank you for all the great feedback on the Blogger Highlight series, I’ve enjoyed meeting each blogger and sharing their site with you. This week we highlight the blog Solongasicanbreath. I’ve followed Marie for a short time but we connected straight away. She has ME which is a severe chronic illness and she graciously answered a question about the illness for me. Interestingly enough we have the same illness, ME and CFS are the same just different names. It sounds like CFS is more often used in America whereas the UK uses ME. I know the struggle and mine is not severe, I admire Marie’s outlook on life with the struggle she has. 

SOLONGASICANBREATHE

In late 2011 ME – Myalgic Encephalomyelitis – entered my world after a viral infection and while I lost my full time job in Accounting, my hobbies (which included hot yoga, running with my local athletics club and horse riding), and everything that once defined me, I gained a swathe of space and time.

Since then, I’ve used this time to observe this odd world of ours, amend how I view the term “living” and dabble in writing and tree planting (my friends, husband and I have planted about 100 mainly native trees in our 3/4 acre garden).

I’m passionate about our environment and live as sustainably as I can. We grow a lot of our own vegetables while buying into consumerism as little as possible.

My poems, short stories and non-fiction can be found in the books Poems from Conflicted Hearts, Observant Observings, magazines and journals such as Slant, Caustic Frolic, ROPES, JuxtaProse, online resources Glossy News, Every Writer and newspapers Irish Examiner and Irish Independent.

From 2014 to 2021, I wrote a regular column for the magazine Athenry News and Views.

One very important post she wrote is about having ME its called Losing Myself. It’s a long read but worth every minute. 

WHAT IS ME?

As per the CDC, ME is a serious and often long-lasting illness that keeps people from doing their usual activities.

It makes physical and mental exertion difficult.

Symptoms include trouble thinking, severe tiredness and other symptoms.

There is no known cause or cure. Care usually means treating the symptoms that most affect a person’s life.

HOW TO HELP PATIENTS WITH ME IN IRELAND?

There are many organisations available to patients and their carers.

Irish ME/CFS Association: https://irishmecfs.org/

The Irish ME Trust: https://www.imet.ie/

ME Advocates Ireland: https://meadvocatesireland.blogspot.com/

Patients with Severe ME  remain bedridden and need help with basic activities including nutrition and hydration.

Questions I asked

M.  You’ve published many articles, how did you get involved in writing for magazines?

M.  Like everything in life, by accident! In early 2014 after having some poems I submit to an anthology published, the publisher of the anthology asked if I’d enough material for a solo poetry book, which I did. And after that book Observant Observings was published and some articles appeared in local media to promote it, the editor of a local magazine reached out to me and asked if I was interested in writing a regular column for them. I said why not! I wrote an article for every issue from late 2014 to 2021 when the magazine ceased trading due to the impacts of the pandemic. And while I was writing for them, I began sending off work elsewhere which too has been published. Then, in 2016, after I wrote a letter to the editor of our national newspaper, The Irish Independent, following our general election at the time, and pointing out the reasons for anger in the country, the editor of the paper reached out to me, asking if I’d follow up with a full length journalistic piece, and that was published under my own name, which gave me another feather in my cap! Life lesson: take calculated risks! Have confidence in your ability and challenge yourself!

M.  How do you find joy in your day?

M.  Like many people living with long term illness, and being as limited as I am due to my ME, I’ve had to adapt and re-learn what living means without having a job or social life or the hobbies I once had (which included hot yoga, running with a local athletic club and horse riding). It didn’t happen overnight. But the more I sat with myself, the more I began to look outward, to see the seasons change, the light change within a day, etc. That’s where I now find joy. Watching the seasons roll in and watching how nature and her creatures react to each change. At present I have a hooded crow who for the last 3 years has showed up at my kitchen window for breakfast, lunch, and dinner. Joy can be found in the smallest of places, and you don’t even have to dip into your pocket to enjoy it!

Be sure to pull up a chair and read through Marie’s archives, you’ll leave with more knowledge than you came with. 

Melinda

Looking for the Light

 

Celebrate Life · Chronic Illness · Health and Wellbeing · Medical · Men & Womens Health · Self-Care

Lung Cancer Awareness Month

Our lung health is critical to having a healthy life. I learned more about Lung Cancer while researching for this post, and I’m so glad I quit smoking 20+ years ago. 

Whether you are in perfect health, or you are living with a lung condition, there are many things you can do to protect your lungs and maintain your overall health and well-being.

Sometimes we take our lungs for granted. They keep us alive and well and for the most part, we don’t need to think about them. That’s why it is important to prioritize your lung health.

Your body has a natural defense system designed to protect the lungs, keeping dirt and germs at bay. But there are some important things you can do to reduce your risk of lung disease. Here are some ways to keep your lungs healthy.

Don’t Smoke

Cigarette smoking is the major cause of lung cancer and chronic obstructive pulmonary disease (COPD), which includes chronic bronchitis and emphysema. Cigarette smoke can narrow the air passages and make breathing more difficult. It causes chronic inflammation, or swelling in the lung, which can lead to chronic bronchitis. Over time cigarette smoke destroys lung tissue and may trigger changes that grow into cancer. 

If you smoke, it is never too late to benefit from quitting. We can help whenever you are ready.

I WANT TO QUIT 

Avoid Exposure to Air Pollutants That Can Damage Your Lungs

Indoor Air Quality

  • Indoor Air Quality (IAQ) refers to the air in the buildings and structures that we work, live, and play in as well as the immediate area around these buildings and structures.
  • IAQ is important for ALL of us since we spend up to 90% of our time indoors.
  • It can be surprising to learn that indoor air can be even more polluted than the air outdoors.
  • Secondhand smoke, chemicals in the home and workplace, mold and radon all can cause or worsen lung disease. 
  • You can take steps to improve your indoor air quality

Talk to your healthcare provider if you are worried that something in your homeschool or work may be making you sick.

Outdoor Air Pollution

The air quality outside can vary from day to day and sometimes is unhealthy to breathe. Knowing how outdoor air pollution affects your health and useful strategies to minimize prolonged exposure can help keep you and your family well. Climate change and natural disasters can also directly impact lung health.

To protect your lungs from outdoor pollution consider the following:

  • Avoid exercising outdoors on bad air days
  • Avoid exercising near high traffic areas
  • Check Airnow.gov to find out the daily air conditions in your area
  • Don’t burn wood or trash

Get Regular Check-ups

Regular check-ups help prevent diseases, even when you are feeling well. This is especially true for lung disease, which sometimes goes undetected until it is serious. During a check-up, your healthcare provider will listen to your breathing and listen to your concerns.

It is best to catch a lung condition in its earliest stages. That is why it is important for you to know what some of the common signs and symptoms are for lung conditions

Exercise

Whether you are young or old, slender or large, able-bodied or living with a chronic illness or disability, being physically active can help keep your lungs healthy. Learn more about how exercise can strengthen your lungs.

Public Health and Your Lungs

Health begins where we live, learn, work and play, and it’s important to ensure that safeguards are in place to protect us and prevent disease. 

SEE HOW PUBLIC HEALTH ISSUES CAN AFFECT LUNG HEALTH.

The scariest part is that you can get Lung Cancer from our everyday environment. To many saying “mask” sends their eyes rolling but if you think about it, wearing a mask prevents the Flu and COVID-19, and it protects your lungs. I look at China and see most people wearing masks, my guess is that COVID-19 scared them into the habit.

Melinda

Reference:

https://www.lung.org

Celebrate Life · Chronic Illness · Health and Wellbeing · Medical · Men & Womens Health · Self-Care

Diabetes Awareness Month

The number of people with Diabetes is staggering and can cut your life short if not managed. Below are estimates for the United States and estimates based on ethnic background.

Estimated prevalence of diabetes in the United States

  • Total: 38.4 million people of all ages had diabetes (11.6% of the population) in 2021. 38.1 million were adults ages 18 years or older.
  • Diagnosed: 29.7 million people of all ages had been diagnosed with diabetes (8.9% of the population).
    • 29.4 million were adults ages 18 years or older.
    • 352,000 were children and adolescents younger than age 20, including 304,000 with type 1 diabetes.
    • Age-adjusted data from 2019 to 2021 showed that, for both men and women ages 18 years or older, the prevalence of diagnosed diabetes was highest among American Indian and Alaska Native adults (13.6%), followed by non-Hispanic Black adults (12.1%), adults of Hispanic origin (11.7%), non-Hispanic Asian adults (9.1%), and non-Hispanic White adults (6.9%).
  • Undiagnosed: 8.7 million adults ages 18 years or older had diabetes but were undiagnosed (22.8% of adults with diabetes were undiagnosed).

Read about the estimates of diabetes in the United States External link and the prevalence of both diagnosed and undiagnosed diabetes in the National Diabetes Statistics Report from the Centers for Disease Control and Prevention (CDC).

According to the American Diabetes Association’s Economic Costs of Diabetes in the U.S. External link, the total estimated cost of diagnosed diabetes in 2022 was $412.9 billion, including $306.6 billion in direct medical costs and $106.3 billion in reduced productivity.

Additional Reports on Diabetes

References

Last Reviewed January 2024
This content is provided as a service of the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK), part of the National Institutes of Health. NIDDK translates and disseminates research findings to increase knowledge and understanding about health and disease among patients, health professionals, and the public. Content produced by NIDDK is carefully reviewed by NIDDK scientists and other experts.

Why is Diabetic Medications so expensive?

Pharmaceutical companies spend billions of dollars in research and development to create new drugs, and for them to recoup their investment the FDA gives them a timeframe where the drug can not be made into a generic. If companies didn’t have a chance to recoup on investment, manufacturers would stop doing research to make more targeted drugs through the research they do. Brand names are more expensive for this reason. They are not public health services and are not operated by our government. Our government gets involved when the drugs are presented to the FDA for approval.

If you don’t have medical insurance, the cost of medication can put a dent in your monthly cost of living. Before picking up your medication even if you have insurance go on the app GoodRX to see if they have a less expensive price, and the pharmacist will honor the GoodRX price. If GoodRX doesn’t have a lower price ask the pharmacist if they know of any coupon codes. The first thing I do when taking a brand drug is go to the medication’s website to see if they have a co-pay program. I’m taking several newer brand medications and paying almost nothing because of the company’s co-pay cards.

Melinda

Reference:

https://www.niddk.nih.gov/health-information/health-statistics/diabetes-statistics

Chronic Illness · Health and Wellbeing · Medical · Men & Womens Health · Self-Care

Fibromylagia Thoughts #13

I was diagnosed with Fibromyalgia in 2015 and during the years that have followed, I’ve experienced many types of symptoms and flares. In the past six months I’ve had many waves of flares to differing degrees, and also have experienced symptoms I had forgotten were fibromyalgia-related. I had to go back and read the basics and all the types of symptoms a flare can bring about.

Here are a few symptoms that were new to me

Reactive skin, burning all over my body that felt like acid with the simple move of my shirt or wiping my hands dry.

The arthritis pain in my hands has reached a new level of pain.

Parts of my body hurt more than before.

Overview of Fibromyalgia

Fibromyalgia is a disorder characterized by widespread musculoskeletal pain accompanied by fatigue, sleep, memory and mood issues. Researchers believe that fibromyalgia amplifies painful sensations by affecting the way your brain and spinal cord process painful and nonpainful signals.

Symptoms often begin after an event, such as physical trauma, surgery, infection or significant psychological stress. In other cases, symptoms gradually accumulate over time with no single triggering event.

While there is no cure for fibromyalgia, a variety of medications can help control symptoms. Exercise, relaxation, and stress-reduction measures also may help.

This is a short overview of whoever. There’s a wealth of knowledge available to read. Remember to check out the Fibromyalgia organizations. Look for respected sources because I ‘ve ran across several sites that are only selling supplements or pushed memberships. You want solid resources.

Some exercises may help, look for them and see how they fit in your life.

Melinda

References:

https://www.mayoclinic.org/diseases-conditions/fibromyalgia/symptoms-causes/syc-20354780

Celebrate Life · Chronic Illness · Communicating · Health and Wellbeing · Medical · Men & Womens Health · Mental Illness

10 Phrases Nobody With Bipolar Disorder Wants To Hear

By Tanya Hvilivitzky

Medically Reviewed by Allison Young, MD

Last Updated: 31 Jul 2024

Understanding the impact of your words can make a significant difference. Discover more thoughtful ways to express yourself and create a more caring environment.

Words have immense power. They can uplift and encourage but also wound deeply, often without the speaker even realizing it. This is particularly true for individuals living with bipolar disorder, for whom certain phrases can be not just unhelpful but profoundly hurtful. While some of these comments might seem innocuous or well-meaning, they often reflect misunderstandings about the nature of mental health conditions.

These phrases wouldn’t just be hurtful to someone with bipolar disorder; they can be upsetting to anyone, as they often invalidate feelings and experiences.

The goal isn’t to police language but to encourage awareness and empathy. Many in our community have shared that specific comments, though well-intentioned, can worsen their struggles. Understanding why these phrases are hurtful helps us become better allies and offers support that truly helps.

Here are 10 of the most common and hurtful things people with bipolar disorder have heard:

1. ‘Snap Out of It’

This phrase implies that managing bipolar disorder is simply a matter of willpower, which dismisses the complexity and challenges of the condition. Bipolar disorder is a serious mental health condition that involves severe mood swings, including manic and depressive episodes. Suggesting that someone can “snap out of it” minimizes the profound impact these episodes can have on a person’s life. It also ignores the necessity of medical treatment, therapy, and lifestyle changes to manage the disorder effectively.

A more supportive approach would be acknowledging their struggle and asking how to help, such as, “I can see you’re going through a tough time. How can I support you?”

2. ‘Everyone Has Mood Swings Sometimes’

Comparing typical mood swings to the extreme highs and lows of bipolar disorder minimizes the severity of the condition. Mood swings in bipolar disorder are not just simple changes in emotion; they can be intense and debilitating, affecting every part of a person’s life, from their relationships to their ability to function day-to-day. This comparison can make someone with bipolar disorder feel misunderstood and isolated.

Instead, try expressing empathy without comparison: “I can’t imagine how hard this must be for you. I’m here to listen if you need to talk.”

3. ‘You’re Just Being Overly Dramatic or Emotional’

This can be particularly hurtful as people with bipolar disorder may react strongly due to their condition, and being told they’re overreacting can feel invalidating. Such a statement dismisses their genuine feelings and experiences, which are influenced by their brain-based disorder. It’s essential to recognize that their reactions are not within their complete control.

A better way to respond would be to validate their feelings: “It seems like this is really affecting you. How can I help?”

4. ‘I Wish I Was Manic so I Could Get Stuff Done’

This comment trivializes the manic episodes of bipolar disorder, which can involve risky behaviorssleep problems, and impaired judgment, not just increased productivity. Mania is not simply a burst of energy; it can be destructive and dangerous. You might inadvertently romanticize a very challenging aspect of the disorder by saying this.

A more compassionate approach would be to ask how they are managing their symptoms: “It must be exhausting dealing with mania. What helps you cope?”

5. ‘Maybe You Should Pray More’

While spiritual practices can be a source of comfort for some, suggesting that prayer alone can manage bipolar disorder dismisses the need for medical treatment and professional support. Mental health conditions like bipolar disorder typically require a combination of medicationtherapy, and lifestyle adjustments.

A more helpful comment would be: “I hope you find comfort in your faith, and I’m here to support you in whatever way you need.”

6. ‘You Don’t Seem Like You’re Bipolar’

This is along the same lines as “You seem so normal.” This statement can make someone feel like their struggles are being dismissed or that they are being judged for not showing visible signs of their condition. Bipolar disorder doesn’t have a “look,” and many people work hard to manage their symptoms and appear outwardly stable. It’s essential to recognize that internal experiences can differ greatly from outward appearances.

Instead, you might say: “I admire how well you manage your condition. How are you really feeling?”

7. ‘Why Can’t You Just Be Happy?’

Suggesting that happiness is simply a choice overlooks the complex factors that influence mood in bipolar disorder. Happiness is not a simple decision for someone with a brain-based disorder; it can be influenced by connections between brain cells, life circumstances, and other factors beyond their control. This question can feel dismissive and make the person feel blamed for their condition.

A more supportive statement would be: “I’m sorry you’re feeling this way. What can I do to help?”

8. ‘Have You Tried Just Not Taking Your Meds?’

This can be dangerous advice, as managing bipolar disorder often requires careful medical supervision, and abruptly stopping medication can have serious consequences. Medications for bipolar disorder are usually carefully prescribed and monitored by a healthcare provider to manage symptoms and prevent an episode. Suggesting someone stop their medication can undermine their treatment plan and pose significant risks.

Instead, express support for their treatment plan: “I hope your treatment is helping. How are you finding it?”

9. ‘You Just Need to Exercise More’

While exercise can be beneficial for mental health, suggesting it as a cure-all solution minimizes the complexity of bipolar disorder and the need for comprehensive treatment plans. Exercise is part of a broader treatment strategy that includes medication and therapy.

Instead of suggesting a simple fix, acknowledge the complexity of the condition: “Exercise can be helpful. What else is part of your treatment plan?”

10. ‘You’ve Got It So Good, Why Are You Depressed?’

This minimizes the person’s feelings and implies that their life circumstances should prevent them from feeling depressed, which is not how bipolar disorder works. Depression in bipolar disorder is not about having a bad day; it’s a severe symptom that can occur regardless of external circumstances.

A more empathetic response would be: “I know things might look good from the outside, but I understand that doesn’t change how you feel. How can I support you?”

UPDATED: Originally posted November 27, 2016

CAREGIVERSFAMILYFRIENDSRELATIONSHIPSSTIGMA

ABOUT THE AUTHOR

Tanya Hvilivitzky

Tanya Hvilivitzky has spent more than 30 years in the communications field — a career that has included stints as an investigative journalist, managing editor for a lifestyle and wellness magazine, corporate communications director, and researcher/writer. She has been with bpHope (and bp Magazine) since 2016, serving in roles such as features editor, interim editor, and, currently, senior editor. She has been devoted to mental health awareness since she was the editor of Schizophrenia Digest in her early days, and now with a particular focus on highlighting the complexities of bipolar disorder through compassionate, service-based journalism. As an award-winning writer/editor, Tanya received the Beyond Borders Media Award for her 2012 investigative exposé about human trafficking for Niagara Magazine. Her work on this critical topic also earned the Media Freedom Award “Honouring Canada’s Heroes” from the Joy Smith Foundation to Stop Human Trafficking.

Melinda

Reference:

https://www.bphope.com/bipolar-buzz/the-worst-things-you-can-say-to-someone-with-bipolar/?utm_source=iContact&utm_medium=email&utm_campaign=bphope&utm_content=BUZZ+-+Nov3+-+10Phrases

Celebrate Life · Chronic Illness · Communicating · Health and Wellbeing · Medical · Men & Womens Health

What I’ve Learned In 61 Years Part 7

Customer Service has become a relic term, not even common courtesy is extended today.

Medical doctor’s offices claim to be the top in the field with all these awards including ones for customer service. Why is it that I can’t get a critical question answered by my doctor through the portal?

I had to wait an hour on the phone until the receptionist could find a live person to talk with me, I didn’t have anything better to to do. Maybe it’s time we start charging for the hours we spend trying to get answers. It took me from 10/22/24 to 11/6/24 to get someone on the phone and schedule my surgery.

Today I had an appointment with my new pharmacist since I’m changing pharmacies. We scheduled last week to meet today at 2:00 pm, at 2:30 pm I called to say I had other things to do and when she was ready she could call to reschedule. I got a message back saying one of the pharmacists had a meeting that ran long. Why can’t you text me the minute you knew there was a conflict? Again where the hell is the communication. It’s like the medical community has decided it’s no longer their issue. I disagree!

Why did the powers that be allow text spam? Who’s making money here? Or is it that big business has so much power over the FTC that allowed this to happen?

Who is selling my email information? I get a 10-15 spam emails a day. It is impossible to track down because I will not click on any links. Be sure to read the Privacy Information for companies you sign up with to see what they do with your data.

All the issues I was having with Bots were because WordPress shares your information with its so-called partners. I had to search a bit but found a hidden sentence that if clicked allows WordPress to share information with their AI partners for training AI. Ok, I switch it off thinking that mess is over. Not so quick. I went three days without Bots and now they are back with a vengeance. I don’t have a complete problem with AI but I want to know how my content is used and how I get credit for the content. It also screws up the views, it can get so complicated that it’s not worth it. I will say that FaceBook/Meta is the AI bot that attacks my archives daily.

I realize not every town has these problems, that’s great for you. I hope it remains that way for a long time.

I’m observing that most businesses are pushing you to their portals so they don’t have to talk with you. How far down do we go from here? Will we have to make an appointment just to have a question answered?

I don’t care for this lack of human connection one bit, it will only spill over to the rest of our lives. Scary!

What bothers you today about the lack of communication?

Melinda

Celebrate Life · Chronic Illness · Health and Wellbeing · Medical · Men & Womens Health · Mental Health

Health Update November 2024

The trip to the Mayo wasn’t quite what I expected but you have to remember I was only there for three days. I was scheduled for four days but was so frustrated I left early. The good is that a couple of things were ruled out. For one I don’t have cancer which was a major concern of mine, and I don’t have a bleeding disorder. They did discover I had weakness in my legs, hands, and arms but I did not stay around to meet with the Neurologist. I also found out I have several types of serious Anemia but my Immunologist doesn’t seem to care. Time for a new Immunologist. I even stopped my Antibody Infusion Treatments due to a lack of communication on his part. The Mayo for as good as they are can only handle so many areas of concern due to time constraints. They wanted me to come back for more testing but I refused. The trip cost was very high when you look at airport parking, airline tickets, a rental car, and a hotel, eating, and putting the dogs in the kennel. Not to mention my husband taking a week off work. Maybe I’ll go back at another time but for now, I’m seeking out doctors that can help me locally.

I sought out a Hand Orthopedic doctor for carpel tunnel and the pain I was experiencing. Through the process, I found out I have Osteoarthritis in my thumbs which is one reason for the severe pain. I now wear thumb braces, take low-dose pain medication for arthritis in my hands, and am having carpel tunnel surgery in both hands as well as having a wrist brace taken out that was put in when I broke my wrist in 2018. It’s moved and it causing pain. I hope to have at least the left-hand surgery done this month.

I’ve been battling one Fibromyalgia flare after another for months now. I’ll save the details for the Fibromyalgia post I’m writing.

I have also been battling low-grade depression probably caused by stress and worry. My depression is very sensitive to stress. I’m feeling better but still not my normal self.

One great action I’ve taken is to return to weekly chiropractor visits and monthly massages. This has helped me work the stress out of my body and work to align the degenerative areas. It’s a hurt-so-good stage.

Like everyone, there’s always something we are dealing with and we have to step up to the plate and deal with them. :)

Melinda

Celebrate Life · Chronic Illness · Health and Wellbeing · Medical · Men & Womens Health · Mental Health · Moving Forward

Resisting the Lure of Toxic Positivity While Chronically Ill

by Hannah Shewan Stevens

Medically Reviewed by:

Francis Kuehnle, MSN, RN-BC

Chronic illness is hard to live with, but coping by responding with excessive positivity can suppress our real feelings.

Those who live with chronic illnesses know all too well how frequently people shower you with meaningless platitudes like “just be positive” and “mind over matter.”

Of course, how we feel mentally affects our physical health, but being chronically ill also sucks sometimes. It’s OK to acknowledge that reality. But often, when we do, we’re told we’re being overdramatic or to force ourselves to “think our way back to being healthy.”

It’s time to reject toxic positivity and find coping mechanisms that actually work for you instead of methodologies that punish you for having “negative feelings.”

What is toxic positivity?

Toxic positivity is an expectation that no matter how serious a situation or diagnosis is, a person should maintain an ongoing optimistic and positive outlook and attitude regardless of how serious the circumstances are,” said Chicago-based clinical social worker Iris Waichler, MSW, LCSW.

This invasive method of communication shows up in countless ways, often slipping out of people’s mouths without them even noticing. Sometimes, it comes from the inside, led by an internal battle to just “get over it,” but it typically arises when people place their life view onto others.

“Toxic positivity often looks like someone giving you a motivational quote instead of actually listening, helping, or being there for you,” said Kitty Underhill, a body and self-acceptance coach from London, England. “For example, you could be struggling and communicating that to a friend, and they shut down the conversation with a statement like ‘good vibes only’ or dismissing it as being ‘low frequency.’

“Toxic positivity also looks like using buzzphrases like ‘what doesn’t kill you makes you stronger’ and telling you that you need to have a more positive attitude rather than hearing you out — it’s an emotional cop-out,” she added.

The impact of toxic positivity is wide-ranging and pervasive, sometimes hiding beneath the surface for years before we’re able to recognize that it’s prevented us from feeling the full spectrum of human emotion without feeling guilty for not being cheerful enough for those around us.

“Toxic positivity may cause people to believe their feelings are not worthwhile, create self-doubt and shame, and make them believe their feelings are invalid,” said Waichler. “The unintended consequences may be enhanced insecurity, which lessens self-confidence and self-worth.”

How can it show up in our lives with chronic illness?

The effects may largely be the same, but chronically ill people deal with another poisonous layer when facing toxic positivity: disbelief.

Too often, disabled and chronically ill people are encouraged to “think themselves well” because it’s “mind over matter,” but this neglects reality. A positive outlook can improve someone’s overall well-being. However, it’s not a magical cure for incurable illness.

“A healthy person may not have a real understanding of the physical, medical, and psychological ramifications that chronic illness has on an individual,” Waichler said. “A healthy person’s attempt to “cheer them up” or be unrealistically positive can create feelings of alienation, resentment, and anger for the person on the receiving end.”

Toxic positivity is dismissive because it discards their feelings, insisting that they be processed on the other person’s terms. Unsurprisingly, this is a common occurrence between people with and without chronic illnesses, as it’s easily assumed that we’re being overdramatic or exaggerating our symptoms.

Faced with an onslaught of forced cheerfulness and disbelief, submitting to toxic positivity sometimes feels like the only option, but chronically ill and disabled people deserve to be heard.

“It can be easy to fall for toxic positivity, especially when a lot of ableism depends on disabled folks not speaking up about what they are experiencing and overriding their own comfort and pain levels to make abled folks feel more comfortable,” said Underhill.

“We must remember that toxic positivity is another way of shutting down unpalatable emotions and that our emotions still deserve to be heard and expressed,” she added.

Understanding the difference between toxic positivity and genuine positivity 

“Genuine positivity makes space for the negative and doesn’t try to write it off or bat it away,” said Underhill. “Genuine positivity helps you to see things from different angles and perspectives, which can be helpful if we’re getting tunnel vision from feeling hopeless, angry, or upset from experiencing chronic pain issues.”

Where genuine positivity leaves spaces for pain while searching for light, comparatively, toxic positivity shuts down the conversation and obliterates the beautiful spectrum of our emotions.

Resisting the seductive pull of toxic positivity is exhausting, and sometimes, we fall under its spell before it’s possible to throw up a shield.

“If you’ve succumbed to toxic positivity, consider taking a step back to evaluate why you acquiesced,” said Carissa Hodgson, LCSW, OSW-C, director of programs and community outreach at Bright Spot Network and a clinical social worker. “Is it because you don’t have anyone who can authentically support you? Are you struggling with accepting your feelings about an experience? What is it that you need?”

Building your defenses

“To get rid of toxic positivity, it’s worth asking yourself the question, ‘Why do I feel like I cannot hold space for harder emotions?’” said Underhill.

“It’s also worth remembering that no emotion has a moral value. Emotions are not ‘good’ or ‘bad,’” she added. “Emotions are information that we can learn from and take into account.”

Allow yourself to feel everything you need to feel by granting yourself the gift of patience. There is no better defense against toxic positivity than the freedom to feel your emotions without judging them or suffocating them.

Confronting the toxic positivity around us

Try to practice patience when dealing with toxically positive people. It’s hard when you’re so regularly bombarded with it, but know that they are probably trying to empathize. It’s human instinct to jump straight to suggesting solutions. We all do it, even when it’s unwanted.

“Understand that the person is trying to be helpful,” said Waichler. “Help them to then understand how what they said makes you feel.

“Tell a well-meaning loved one with toxic positivity that you appreciate that they are trying to be supportive and positive about your medical condition,” she continued.

Developing healthier coping mechanisms

It’s crucial to develop additional coping mechanisms that manage the mental impact of chronic illness to resist the lure of toxic positivity long term.

“Educate yourselves about the medical condition and how it will progress so your expectations are realistic,” advised Waichler. “It will help you prepare for changes that will evolve in the future.”

Broaden your circle of friends to ensure that your support network is full of people who will understand your experiences with chronic illness. Your loved ones will support you, but unless they also have a chronic illness, they will struggle to understand. Fellow chronically ill people may be better suited to supporting you without relying on toxic positivity to do so.

However, be wary, too. Even the most well-developed support groups can fall prey to toxic positive influences.

“Toxic positivity is often a trojan horse found in online support groups and discussion boards — seemingly helpful and cheery but completely dismissive of the real struggles people are having,” said Hodgson.

As an additional shield, she suggests that people “Create an empowering mantra that entitles you to your feelings, such as ‘My feelings are real’ or ‘I have a right to feel how I want to feel,’ so when you see a dismissive statement, you can repeat your mantra to yourself and keep on reading.”

Medically reviewed on April 20, 2024

I can see how someone chronically ill can fall deep into the positivity route, it feels good at first but over time it overshadows the reality of being chronically ill. As mentioned in the post, many days suck and we can’t just cover them up as if they don’t exist. I’m all for positive energy but if someone just wants to change your thoughts and act like everything is ok, they are not doing you any favor.

Melinda

Reference:

Chronic Illness · Health and Wellbeing · Infectious Diease · Lyme Disease · Medical · Men & Womens Health · Mental Health · Moving Forward · Self-Care · Tick Borne Illnesses

Understanding and supporting invisible disabilities, including Lyme disease

Lonnie Marcum

OCT 24, 2024

Invisible disabilities are physical, mental, or neurological conditions that are not immediately apparent to others. Despite being “invisible,” these conditions can significantly impact a person’s life and require special accommodations and ongoing support.

Unlike conditions that other people can see, such as those requiring the use of a wheelchair, invisible disabilities often go unnoticed, leading to misconceptions about a person’s needs.

Examples of common invisible disabilities

  • Dysautonomia, also known as autonomic dysfunction, refers to a condition in which the autonomic nervous system (ANS) does not function properly. The ANS controls many crucial bodily functions, such as heart rate, blood pressure, digestion, temperature regulation, and respiratory rate. When the ANS is impaired, these processes can become dysregulated, leading to a wide range of symptoms.
  • Post-exertional malaise (PEM) where even minor physical or mental exertion can result in severe symptom exacerbation, often lasting days or weeks.
  • Chronic fatigue syndrome (CFS): Fatigue lasting six months or more, and PEM
  • POTS (Postural Orthostatic Tachycardia Syndrome) is a condition characterized by a significant increase in heart rate when a person stands up from a lying down position. It is a form of dysautonomia. People with POTS experience an abnormal response when they move to an upright position, leading to symptoms that can be disabling.
  • Myalgic Encephalomyelitis (ME): Causes widespread neuro-immune related symptoms including: neuroinflammation, immune dysfunction, muscle pain, headaches, cognitive dysfunction (often described as “brain fog”), dysautonomia, PEM, CFS and POTS.

Patients with Lyme and tick-borne disease are often left with persistent symptoms following treatment. In MyLymeData, now with over 18,000 participants, the three most frequently reported worst symptoms include neurological-associated symptoms (84%), fatigue (62%), and musculoskeletal-associated symptoms (57%).

POTS is the most common manifestation of dysautonomia reported to occur in patients with persistent symptoms of Lyme disease.

Infection-associated chronic conditions

For years, ILADS conferences have been the only place I heard clinicians and researchers expressing an understanding and a desire to help patients with complex, infection-associated chronic conditions (IACC).

In 2021, I reviewed a paper entitled “Recent Progress in Lyme Disease and Remaining Challenges,” co-authored by 31 researchers from 19 separate institutions. That paper felt like a real tipping point to me.

Last week, I watched the final meeting of the CDC/HHS funded “Infection-Associated Chronic Conditions – Understanding and Engagement” (ICUE) project. During that meeting, LymeDisease.org’s Lorraine Johnson, represented and gave voice to the millions of patients living with chronic symptoms following infection with Lyme and/or other tick-borne diseases. (Read her summary of that meeting here)

With all the new collaborations coming out of the National Academies of Science, Engineering and Medicine (NASEM) workshop on “Lyme infection-associated chronic illness or “Lyme IACC,”  I have high hopes for continued progress—not just for patients with chronic Lyme and co-infections, but so many other marginalized illnesses like long-COVID, ME/CFS, and dysautonomia.

Last year, I wrote about the real symptoms suffered by patients with invisible illness.Recently I offered suggestions on how patients can track those symptoms and share them with their doctors  to aid in better diagnosis and treatment.

For everyone out there suffering from an invisible illness: I just want to say that I see you, I hear you, and I believe you.

LymeSci is written by Lonnie Marcum, a physical therapist and mother of a daughter with Lyme. She served two terms on a subcommittee of the federal Tick-Borne Disease Working Group. Follow her on Twitter: @LonnieRhea Email her at: lmarcum@lymedisease.org.

Melinda

Reference:

https://www.lymedisease.org/invisible-disabilities-lyme-disease/

Chronic Illness · Health and Wellbeing · Infectious Diease · Medical · Men & Womens Health · Mental Health · Moving Forward

AIDS Awareness Month & History

How My Lyme Doctor diagnosed the first HIV/Aids patient in North Carolina

A second-generation physician from Illinois, curious about medical mysteries (“It’s just like detective work!”), young Dr. Joe Jemsek became an infectious diseases fellow in 1977. In 1979, Jemsek and his young family resettled in Charlotte, North Carolina, where he began a promising infectious disease practice at the renowned Nalle Clinic. Intrigued by reports of a “gay cancer,” Joe’s “detective” instincts led him to diagnose North Carolina’s first case of what would soon be known as HIV/AIDS. As the years went by, he grew absorbed by the AIDS epidemic, bearing witness to some of its most dire casualties — losing patient after patient to opportunistic infections — as well as to the first signs of hope with the advent of life-saving drugs in 1995.

I’m so proud of Dr. Jemsek, he took his knowledge as an Infectious Disease doctor and made history. Due to his commitment more research has been done and the lives on people with HIV/AIDS have improved.

What is HIV?

The human immunodeficiency virus, or HIV, is a virus that attacks the immune system, specifically CD4 cells (or T cells).

The virus is transmitted through bodily fluids such as blood, semen, vaginal fluids, anal fluids, and breast milk. Historically, HIV has most often been spread through unprotected sex, the sharing of needles for drug use, and through birth.

Over time, HIV can destroy so many CD4 cells that the body can’t fight infections and diseases, eventually leading to the most severe form of an HIV infection: acquired immunodeficiency syndrome, or AIDS. A person with AIDS is very vulnerable to cancer and to life-threatening infections, such as pneumonia.

Though there is no cure for HIV or AIDS, a person with HIV who receives treatment early can live nearly as long as someone without the virus. And a study in 2019 in the medical journal, Lancet, showed that an anti-viral treatment effectively halted the spread of HIV.

In September of 1982, the CDC used the term AIDS to describe the disease for the first time. By the end of the year, AIDS cases were also reported in a number of European countries.

Where Did AIDS Come From?

Scientists have traced the origin of HIV back to chimpanzees and simian immunodeficiency virus (SIV), an HIV-like virus that attacks the immune system of monkeys and apes.

In 1999, researchers identified a strain of chimpanzee SIV called SIVcpz, which was nearly identical to HIV. Chimps, the scientist later discovered, hunt and eat two smaller species of monkeys—red-capped mangabeys and greater spot-nosed monkeys—that carry and infect the chimps with two strains of SIV. These two strains likely combined to form SIVcpz, which can spread between chimpanzees and humans.

SIVcpz likely jumped to humans when hunters in Africa ate infected chimps, or the chimps’ infected blood got into the cuts or wounds of hunters. Researchers believe the first transmission of SIV to HIV in humans that then led to the global pandemic occurred in 1920 in Kinshasa, the capital and largest city in the Democratic Republic of Congo.

The virus spread may have spread from Kinshasa along infrastructure routes (roads, railways, and rivers) via migrants and the sex trade.

In the 1960s, HIV spread from Africa to Haiti and the Caribbean when Haitian professionals in the colonial Democratic Republic of Congo returned home. The virus then moved from the Caribbean to New York City around 1970 and then to San Francisco later in the decade.

International travel from the United States helped the virus spread across the rest of the globe.

Advances in Treatment options

DOVATO

Cabenuva

Lenacapavir

islatravir. close to FDA approval

There are older medications that may work for you, talk to your doctor about and come up with a plan that works for you.

Melinda

References:

https://www.history.com/topics/1980s/history-of-aids

Celebrate Life · Chronic Illness · Health and Wellbeing · Medical · Men & Womens Health · Mental Health

November Awareness Months And Days

October was full of informative awareness months, and November will also be. The list is extensive, if you want to read about all the awareness months and days, click here.

Awareness Months

Native American Heritage Month

Movember

National Homeless Youth Awareness Month

COPD Awareness Month

Diabetes Awareness Month

Epilepsy Awareness Month

Lung Cancer Awareness Month

Pancreatic Cancer Awareness Month

Awareness Days

International Stress Awareness Day – November 2

World Adoption Day – November 9

Veterans Day – November 11th

Humane Society Anniversary Day – November 22

National Recycling Day – November 15

International Day for Tolerance – November 16

International Transgender Day of Remembrance – November 20

International Survivors of Suicide Loss Day – 1st Saturday before Thanksgiving

Melinda

Celebrate Life · Chronic Illness · Health and Wellbeing · Men & Womens Health · Mental Health · Moving Forward

LGBTQ+ History Month

We are all different, yet we’re the same. I understand that many religions condemn any behavior that doesn’t fit their box and some are driven strongly by their religion. What we must not lose sight of is that we are equal.

The Early Gay Rights Movement in America

In 1924, Henry Gerber, a German immigrant, founded in Chicago the Society for Human Rights, the first documented gay rights organization in the United States. During his U.S. Army service in World War I, Gerber was inspired to create his organization by the Scientific-Humanitarian Committee, a “homosexual emancipation” group in Germany.

Gerber’s small group published a few issues of its newsletter “Friendship and Freedom,” the country’s first gay-interest newsletter. Police raids caused the group to disband in 1925—but 90 years later, the U.S. government designated Gerber’s Chicago house a National Historic Landmark.

Where and when is LGBTQ History Month Celebrated?

In the United States, LGBTQ History Month is celebrated every October. Canada and Australia also celebrate it this month. It is also recognized in the United Kingdom (in February), Hungary (in February), Finland (in November), and Berlin (in June).

And this past year in May, Cuba became the first country in Latin America to celebrate it. Italy also celebrated its first one this year in April.

How It Started

Every October, people around the world celebrate LGBT History Month, a time to honor the contributions and achievements of lesbian, gay, bisexual, and transgender people.

The first LGBT History Month wound up sparking over 150 events across the country in its first year, and the rest, as they say, is history.

There are endless LGBTQ figures to honor this month, but here a few icons to start with:

  • Bayard Rustin, who organized the March on Washington in 1963, where Martin Luther King Jr.’s “I Have a Dream” speech took place
  • Angela Davis, a radical political activist
  • James Beard, a closeted chef who was once as famous for American cooking as Julia Child was for French cuisine
  • Harvey Milk,  famed out activist who became one of America’s first gay elected officials and was assassinated
  • Sylvia Rivera and Marsha P. Johnson, trans rights activists who helped start the Stonewall Uprising
  • Lorraine Hansberry, award winning playwright and author of  A Raisin in the Sun
  • Sally Ride, the first woman astronaut in space
  • Marlon Riggs, award-winning filmmaker, educator, poet, and activist

This article about violence within LGBTQ relationships was eye-opening! 

https://www.nomore.org/shattering-the-silence-intimate-partner-violence-within-lgbtq-relationships/

Food for Thought

The next time you’re in a room with six people, think about this:

You may think the information isn’t relevant to the posts but it is when you consider all the people affected.

Resources:

EQUAL

Melinda

References:

https://www.lgbtqnation.com/2022/10/celebrating-lgbtq-history-month-started-matters/

LGBTQ Resource List

Celebrate Life · Chronic Illness · Family · Health and Wellbeing · Medical · Men & Womens Health · Mental Health · Moving Forward

Transitions

When life flows in one direction for so long,

it’s a shock to the system when the current flows the other direction.

The transition can be difficult and painful,

but the only response is to change with the flow.

Life throws situations our way,

without control, there is only one way to play.

Accept and chart a new course.

Melinda

 

Celebrate Life · Chronic Illness · Communicating · Health and Wellbeing · Medical · Men & Womens Health · Mental Health · Self-Care

A Public Health Crisis: Preventing Loneliness in Chronic Illness

Loneliness is more prevalent than ever — especially for people with chronic or invisible illnesses. Even when it feels difficult or impossible, here’s how you can stay socially connected.

If you live with a chronic illness, you likely know that loneliness is often an unexpected side effect. A chronic illness is a long lasting or permanent condition that requires ongoing medical treatment or limits activities of daily living. Examples include Crohn’s disease, endometriosis, fibromyalgia, and many other conditions.

And when your days are filled with attending doctor’s appointments, feeling too crummy to socialize, and constantly explaining your condition when you do make it out, it’s really no surprise that loneliness and chronic illness go hand in hand.

But now, this problem is becoming more prevalent than ever. The United States Surgeon General released an advisory in May 2023 calling attention to “the public health crisis of loneliness, isolation, and lack of connection in our country.”

If you’re living with a chronic illness, it can be helpful to create your own strategy for staying connected with others and preventing loneliness as much as possible. Take a look at why this is so important, as well as some accessible ideas to try.

The relationship between loneliness and chronic illness

People who live with chronic illness often feel the impact of isolation more than those without a chronic condition. Illness-related factors that can contribute to loneliness include:

  • being unable to socialize due to symptoms, fatigue, or pain
  • losing friends as a result of your illness
  • missing out on school, work, and hobbies
  • feeling as if nobody understands your condition and your lifestyle
  • managing a schedule crowded with medical appointments or hospitalizations 

If your illness is mostly or entirely invisible, this can lead to even more feelings of isolation as you try to explain what’s going on in your body. And since the onset of the COVID-19 pandemic, many people with chronic illnesses have found that their loneliness has gotten even worse as they have continued to be conscientious about keeping their already-fragile bodies safe.

Even when you’re feeling relatively well, it can be hard to socialize. Chronic illness is often unpredictable, and our society isn’t set up to accommodate it. Fear of stigma or ableism might keep you at home. Or you may find that every ounce of your limited energy goes into school or work, with nothing left over for a social life. 

Consequences of loneliness

Long-term loneliness can be a serious issue. The report from the Surgeon General stated that for older adults especially, the physical health consequences of a lack of connection include:

  • 29% increased risk of heart disease
  • 32% increased risk of stroke
  • 50% increased risk of developing dementia 

A lack of social connection also increases the risk of premature death by more than 60%. And loneliness and isolation increase the risk of mental health conditions such as depression, creating a vicious cycle.

Tips on preventing loneliness with a chronic illness

When symptoms and appointments dictate your life, it can feel nearly impossible to increase your social connection. But doing so is crucial for your mental and emotional health. Here are a few accessible ideas to try.

Start small

If the thought of ramping up your social life feels overwhelming, it’s OK to start small and take off the pressure, thinking in terms of acquaintances instead of best friends. Even “micro-interactions,” such as waving at your mailman or thanking a cashier, can give you a boost of connection. 

Send someone a message on social media instead of passively scrolling, or go to a coffee shop on your next low-symptom day so you can be around people even if you aren’t directly speaking with them. These simple actions can have a bigger impact than you might think.

Find a community

Connecting with people who also live with chronic illness can stave off loneliness by reminding you that you aren’t the only one. Look for a support group run by a hospital or nonprofit — your doctor may have ideas. Or search online for a community similar to Bezzy. You’ll find countless social media groups, forums, and Zoom events created for people who live with certain conditions or chronic illness in general (including those who don’t have a diagnosis).

As you spend time with people who have similar experiences, it will become easier to articulate and explain your condition to people who aren’t sick.

Adopt a pet

Animals can help reduce stress and loneliness, and pet ownership is associated with lower levels of social isolation in adults. A pet is great company and can help you feel loved and needed.

If you can, consider adopting a pet. If you can’t put a lot of effort into caring for a pet due to your physical symptoms, look into a low-maintenance pet such as an adult cat. Or see if you can do any of the following from time to time:

  • care for or visit a friend’s or neighbor’s pet
  • visit a cat cafe
  • volunteer for low-energy tasks at a local humane society
  • visit a dog show, dock diving competition, or other pet-related event

Find a therapist

A therapist, counselor, or other mental health professional can help you navigate the mental and emotional side of chronic illness, including thoughts like “My illness makes me unworthy of friendship” and “Connection isn’t worth it.”

Look for a therapist who specifically focuses on clients with chronic illness. Ask your doctor for suggestions or search online. If you cannot pay for therapy, look into sliding-scale options or services offered by a nonprofit or community center.

Stay in touch

Remember, your social connections don’t always have to be big. If you can make it out for a night on the town, great! But if not, make sure you’re still doing something to stay in touch with the people you love.

Use email, social media platforms, phone calls, texting, or whatever communication method works for you. Planning video calls ahead of time might work best for one chronically ill person’s symptoms and schedule, while answering text messages on their own time could be better for somebody else.

Think about the options that are most accessible to you, and tell your family and friends that you want to intentionally catch up with them on a regular basis. Connecting with others as best you can will help you feel less isolated, even during flare-ups.

The bottom line

People are important. We need each other. We can’t live without each other. And even when it feels difficult or impossible, fighting for social connection is worth it.

Use these ideas to work around your chronic illness as you prioritize connection over isolation. Your body and mind will thank you.

Melinda

Reference:

Chronic Illness · Health and Wellbeing · Medical · Men & Womens Health · Mental Illness

ADHD Awareness Month

My father had ADHD and being a teen in his days must have been horrible, the medication of choice was tranquilizers. He wasn’t diagnosed until he was a teen but the minute he moved out he stopped the medication and I can see why. The issue is he didn’t go back to the doctor as medication evolved and it affected his relationships.

I also believe that doctors are too fast to diagnose ADD & ADHD. One important factor is that Medical doctors don’t have the training to diagnose and are often the ones who diagnose first. To have a proper diagnosis, you need a Psychiatrist, and do the testing for an official diagnosis. My last Psychiatrist listed me as ADHD, with no testing, and no conversation, it just showed up on my chart. I would not be ashamed if that was a proper diagnosis but it wasn’t. My proir Psychiatrist of 32 years never once mentioned it. It’s one of the reasons I no longer see my last Psychiatrist.

Every October is Attention Deficit Hyperactivity Disorder (ADHD) Awareness Month, an occasion to raise awareness and support for those with ADHD.

In the United States, about 8.4% of children and 2.5% of adults have ADHD, making it one of the most common mental health conditions. Symptoms of the condition include ongoing patterns of:

Inattention, which means a person may find it challenging to focus or follow directions, but usually, it may not occur due to rebellion or challenges with understanding something.

Hyperactivity, which is when a person may feel the need to move constantly, even when it may be inappropriate for the situation.

Impulsivity, which means the person may have difficulties managing impulsive behavior and considering the long-term consequences of those actions.

Many people may have occasional difficulties paying attention, sitting still, or managing impulsive behavior. But for someone with ADHD, these difficulties tend to occur more often, which may affect how they perform certain daily activities.

During ADHD Awareness Month, communities shed light on this condition and rally to support those who have received diagnoses.

This information from the National Institute of Health has great resources and there may be more that I didn’t read on another page.

Where can I learn more about ADHD?

Free brochures and shareable resources

  • Attention-Deficit/Hyperactivity Disorder: What You Need to Know: This brochure provides information about ADHD in children, teens, and adults, including symptoms, diagnosis, causes, treatments, and resources to find help for you or your child (also available en español).
  • ADHD in Adults: 4 Things to Know: This fact sheet provides information about ADHD in adults, including symptoms, diagnosis, causes, treatments, and resources to find help for yourself or someone else.
  • Shareable Resources on ADHD: These digital resources, including graphics and messages, can be used to spread the word about ADHD and help promote awareness and education in your community.

Multimedia

Federal resources

Research and statistics

  • Journal Articles : References and abstracts from the National Library of Medicine’s PubMed
  • Statistics—ADHD: Statistics on the prevalence and treatment of ADHD among children, teens, and adults

Last Reviewed: September 2024

There is so much information available so don’t put off learning about ADHD, it could help direct your child or yourself to the proper help.

Melinda

Reference:

https://www.healthline.com/health/adhd-awareness-month#history

https://www.nimh.nih.gov/health/topics/attention-deficit-hyperactivity-disorder-adhd#:~:text=Attention-deficit%2Fhyperactivity%20disorder%20%28ADHD%29%20is%20a%20developmental%20disorder%20marked,and%20impulsivity%20that%20interfere%20with%20functioning%20or%20development.

 

Celebrate Life · Chronic Illness · Family · Health and Wellbeing · Medical · Men & Womens Health · Mental Health · Moving Forward · Self-Care · Survivor

Breast Cancer Awareness Month

Breast Cancer Awareness Month is a month that has received a great deal of attention over the years due to the tremendous donations to support new treatment options. That does not mean we should look the other way and think it has enough attention. The success rate of survival has increased but there is still so much to know about Breast Cancer.

The types of Brest Cancer

Ductal Carcinoma In Situ (DCIS)

Invasive Ductal Carcinoma (IDC)

Lobular Carcinoma In Situ (LCIS)

Invasive Lobular Cancer (ILC)

Triple Negative Breast Cancer (TNBC)

Inflammatory Breast Cancer (IBC)

Metastatic Breast Cancer (MBC)

Breast Cancer During Pregnancy

Other Types

Breast Cancer Myths

Myth: Finding a lump in your breast means you have breast cancer

Myth: Men do not get breast cancer; it affects women only

Myth: A mammogram can cause breast cancer or spread it

Myth: If you have a family history of breast cancer, you are likely to develop breast cancer, too

Myth: Breast cancer is contagious

Myth: If the gene mutation BRCA1 or BRCA2 is detected in your DNA, you will definitely develop breast cancer

Myth: Antiperspirants and deodorants cause breast cancer

Myth: A breast injury can cause breast cancer

Myth: Breast cancer is more common in women with bigger breasts

Myth: Breast cancer only affects middle-aged or older women

Myth: Breast pain is a definite sign of breast cancer

Myth: Consuming sugar causes breast cancer

Myth: Carrying a phone in your bra can cause breast cancer

Myth: All breast cancers are the same

Myth: Bras with underwire can cause breast cancer

Breast Cancer Resources

Free Educational Guides

NBCF is dedicated to delivering comprehensive, educational information on breast health and healthy living. From understanding the importance of early detection, to knowing how to prepare for a mammogram, NBCF’s online resources and guides aim to empower women and men with useful information. View guides. Click here to learn more about breast self-examination steps.

National Mammography Program

NBCF provides grants to facilities across the United States that provide screening and diagnostic mammograms, breast ultrasounds, clinical breast exam, and patient navigation to underserved individuals who qualify. Find a facility.

Patient Navigator Program

The Patient Navigator Program is a proactive approach to helping patients overcome the barriers of cost, fear, and misinformation surrounding a disease and its prevention. Find a facility.


Other Resources

In addition to the breast care services that NBCF provides to women in need, the following resources offer financial assistance for breast cancer patients.

National Breast and Cervical Cancer Early Detection Program (NBCCEDP)

The Centers for Disease Control and Prevention (CDC) provides access to breast cancer screening services to underserved women in all 50 states, the District of Columbia, 5 U.S. territories, and 12 tribal organizations.

National Cancer Institute

Information about free or low-cost mammogram screening programs is available through NCI’s Cancer Information Service at 1-800-422-6237.

The American Cancer Society

The American Cancer Society (ACS) provides resource lists for free or low-cost mammograms and financial assitance based on your location. When you go to their website, Cancer.org, look for the “About Us” tab in the top right corner. When you click on that, select your state in the “Where We Help” menu to be directed to a list of local resources.

Breast and Cervical Cancer Treatment Program (BCCTP)

This state program is funded through Medicaid to provide underserved women free healthcare throughout treatment. The program is available in all 50 states. For the application process, contact your local hospital and ask to speak to a nurse or patient navigator regarding the program.

The Patient Access Network Foundation

The PAN Foundation provides assistance to remove financial barriers for medications, treatment, and travel expenses for patients.

Cancer Financial Assistance Coalition

The CFAC is a coalition of organizations that help patients reduce financial barriers during cancer treatment. When you visit their website, select the type of assistance needed and enter your zip code to find resources near your area.

Mammography Facility Database

The Mammography Facility Database is updated periodically based on information received from the three FDA-approved accreditation bodies: the American College of Radiology (ACR), and the states of Arkansas and Texas to provide a list of facilities where mammography services are available based on your location.

Breast Cancer needs to be taken seriously by all and it starts with self-exams and reaching out at the first sign of trouble. You also need to keep your doctor aware of your family history because it can play a big role in whether to not you have the DNA makers for Breast Cancer. Always air on the cautious side.

Melinda

References:

https://www.nationalbreastcancer.org/types-of-breast-cancer/

https://www.nationalbreastcancer.org/about-breast-cancer/early-detection/breast-cancer-resources/

Repost

Celebrate Life · Chronic Illness · Health and Wellbeing · Medical · Men & Womens Health

Today The Testing Starts At The Mayo

Yesterday we spent the day driving around in the countryside looking at farms and fields of solar panels. we went to his tiny lake, but the description did not match the actual place. It was a tiny man-made lake with a shoreline that kids swim in during the warmer months. We went to The Peace Center and watched a great program on Native American Indians, tribe members from all over the country participated. There were many different ceremonial dances by women and men, live tribal music, and singing. It was beautiful. Unfortunately, I left my phone behind and so far the photos my husband took are well….not so good. 

We also checked out what building we needed to be at in the morning and where to park. We’re set. Tomorrow isn’t a long day. I will meet with an internal medicine doctor in the morning and pick up an oximeter machine on Tuesday night.

We have the late afternoon free if we don’t decide to take a nap. The weather is cold here and naps feel really good.

Wednesday starts early at 6:40 AM with blood work and closer to lunch a meeting with a Hematologist. I expect at least one diagnosis to come out of this meeting since most of the blood work being done is focused on the blood itself if that makes sense. One of the problems I currently have is that my hemoglobin is low which means it’s not carrying enough blood through my body.

Unless something is added to my program, I’m off on Thursday and back on Friday afternoon to meet with the Internal Medicine Doctor, I expect a diagnosis to come from this meeting.

Take good care of yourself and I’ll keep you posted if anything new comes up.

Melinda

 

Celebrate Life · Chronic Illness · Health and Wellbeing · Medical · Men & Womens Health · Mental Health · Moving Forward · Self-Care

Sober October

I think the timing of Sober October is perfect, it comes right before the holidays and there is plenty of alcohol flowing at that time of year. Being or getting sober is damn hard any time of the year but during the holidays your endurance can get tested. For me to remain sober, I made it known that I had stopped drinking, that didn’t mean that others needed to stop but I wanted it known that this was a commitment to me and it was serious. I stopped drinking close to 20 years ago, went cold turkey, and never attended a meeting and my husband still drinks. Actually, he’s an alcoholic but that’s his choice. I had the strength to do it so quickly because it was affecting the medications for my mental illness and it’s hard to live without stability of the mind.

Don’t convince yourself that you can only have fun while drinking and stand firm that you can hang out with family or friends without drinking. One line to draw is that no one badgers you or says something negative because you’re not drinking. Give them one chance, stop the conversation, and set a boundary. If they can’t respect that, they are not your friend nor do they care about you. Parents and family can be the worst, hold the line clearly and if they break your boundary again don’t be around them. The psychology behind what they are doing quite frankly is disrespecting you.

 

Photo by Helena Lopes on Pexels.com

 

Alcohol is like a drug, and you become addicted to it, it’s also easy to see alcohol as a comfort that makes the day easier. I get that, I understand that and I know that when you are ready to quit drinking YOU CAN. Seek out all the support you need, just don’t turn to a replacement addiction. Everyone is different and how we move past an addiction is different, don’t compare yourself to others, or buy into that you have to recover a certain way. There is no certain way, you have to make your own, just don’t do it alone.

Melinda

Chronic Illness · Health and Wellbeing · Medical · Men & Womens Health · Mental Health · Moving Forward

Feeling Invisible With A Stoma By Guest Blogger And Friend Invisibly Me

Thanks to the incredible efforts of campaign groups, individuals, healthcare companies and charities, the world knows more about stomas. With that increased awareness comes a lot of good things, but unfortunately there’s still many ways in which those with an ostomy can feel ignored, misunderstood or sidelined. Here are just 5 ways in which we can be left feeling invisible with a stoma. 

[ This post is in honour of 5th October Stoma Awareness Day 2024, the theme of which is “Do You See Me?”]

 

A photo of me standing up with hands on hips with a black top, jeans and long red hair. The top is pulled up slightly to show a red and white Hello Kitty themed stoma bag cover.
A close up photo of a purple sticker on a wooden door that reads "not all disabilities are visible", with the hashtag "stoma friendly".

 

Make to to spend time searching Caz’s archives, she has written on so many topics and has often shared how she’s battled her chronic illnesses.

Melinda

Celebrate Life · Chronic Illness · Health and Wellbeing · Medical · Men & Womens Health · Mental Health · Survivor

Am I Strong Enough?

You would think that the question would be easy to answer given the physical abuse by my mother which started at birth, my stepfather hitting me in the mouth with his fist, watching my mother being beaten by my stepfather from the day they were married, and the sexual abuse by my father. My childhood was beyond traumatic, and it didn’t stop when I became a preteen.

At 12 years old, I was living with my father who was incapable of being a father and had no rules. I was dating a 21-year-old dealer and addicted to speed. Every weekend was a different mix of exotic drugs to try. I skipped school for 45 days straight and my father had me put in Juvenile Detention for three days as punishment. I was so dead inside and totally lost that the sexual abuse didn’t phase me at the time.

There’s plenty more to talk about but I also had issues when I got older. I was sexually assaulted more than once, stalked three times, had Cervical Cancer at 27 years old, and had a total hysterectomy. That’s a lot to decide at 27 years old with no children but I made it clear at 12 years old that I didn’t want children.

My father committed suicide when I was 28 years old, the only positive is that I sought out treatment for my Bipolar Disorder. Sometimes I think he died so I would live.

I’ve had all the normal career challenges including being fired from a six-figure job for something I didn’t do. I didn’t get rich of the lawsuit but I proved my point, it was someone else’s lie and politics that got me fired. The lawsuit did prove to me how strong I was and how much badgering I could take from the other side.

I’ve had health issues large and small most of my life and I think I’m facing my biggest battle yet. My first day at The Mayo Clinic is 10/13/24 and after extensive testing, I will meet with my team of doctors and learn my diagnosis and the treatment plan. I have complete confidence in The Mayo and am working hard to prepare for whatever they find.

I feel calm most of the time with a tiny bit of fear for how my life could change. I’ve worked hard as always to not diagnose myself but I have run a few searches on Copilot that have given two possible answers. I’m not putting stock in that but it’s easy to believe when everything you put in the search comes back to the same answer. I’ll leave that for the doctors and won’t be surprised if it’s something completely different.

I won’t know if I’m strong enough until the reality comes but at least I have a good track record of survival. 

I’m sending a special thanks to everyone who has sent kind words of encouragement and well wishes. You are the sunshine in my life.

 

 

 

 

 

 

 

 

Melinda

Celebrate Life · Chronic Illness · Fun · Health and Wellbeing · Infectious Diease · Medical · Men & Womens Health · Mental Health

You Know It’s Crazy When…

If you haven’t followed me long, you may not be aware of the health struggles I’ve had dating back to 2010. Not only have I had a major run-in with what might have been the end of my life, but since 2012 I’ve suffered with severe balance issues and cognitive impairment. Although I don’t have a clue what The Mayo will diagnose me with, I am totally confident in their ability to find answers and get me the right treatment.

This post is something I’ve been laughing so hard about because it can only be funny. I’ve been wishing this one plant to have babies for the past year or two to no avail. Today, I was looking at it again, trying to understand why it hasn’t had a baby. Then the brick hit me, it’s an artificial plant! It makes me laugh every time I think about it. Apparently, I was very sick when I planted it thinking it was a live plant only to find today, that it won’t have any babies. HAHA!!!!!!!

I chose to find it funny, how could I not? I won’t kick myself for being too sick to know the difference. I believe this general attitude is why I keep pushing forward in life and can deal with what comes my way. Who needs a kick in the ass?

Melinda

Celebrate Life · Chronic Illness · Health and Wellbeing · Medical · Men & Womens Health · Mental Health · Self-Care

Physical Therapy for Fibromyalgia

Physical therapy may be used alongside other treatments to help reduce fibromyalgia pain and improve mental health. 

Chronic pain and fatigue are common symptoms of fibromyalgia. You may also experience sleep, memory, or mood issues as a result of this condition.

There’s no cure yet for fibromyalgia, but doctors may recommend physical therapy in addition to medications and alternative therapies, like massage and acupuncture, to help with your symptoms. 

As part of a holistic plan, physical therapy can help you cope with your pain. It may also reduce the frequency and intensity of your symptoms. 

This article examines how physical therapy and the right exercise program might help those with fibromyalgia.

How can physical therapy help fibromyalgia?

Physical therapy can offer a variety of benefits for those with fibromyalgia, including:

  • decreased pain, fatigue, and stiffness
  • increased range of motion
  • improved mental health
  • reduced need for medications

Research has found that individuals with fibromyalgia may have difficulty with lower aerobic endurance and muscle strength. They are also likely to live a sedentary life because of their pain. This can increase their likelihood of developing other health complications. 

With the help of physical therapy, quality of life and productivity can improve. 

What types of exercises are recommended for fibromyalgia?

Doctors highly recommend that those with fibromyalgia participate in aerobic and strength training activities. While current research does not offer as much support for flexibility exercises, these exercises may also prove beneficial, especially as part of a warm-up or cool-down routine. 

Types of exercise frequently recommended if you have fibromyalgia include:

What’s the best exercise program for fibromyalgia?

If you’ve received a diagnosis of fibromyalgia, a licensed physical therapist can design or tailor a holistic program specifically for you.

To create your personalized exercise program, a physical therapist will consider your overall health and exercise level. They’ll work with you to develop a workout that is sufficiently challenging but also comfortable enough to do several times per week. 

Because fibromyalgia symptoms can fluctuate, your physical therapist may need to make frequent adjustments to your program.

Working out consistently is important, but it can be difficult, especially if you have a painful flare. 

Your physical therapist may ask questions about the types of activities you enjoy doing to find ways to motivate you. They may also begin slowly and build up the intensity of your workouts over time to help prevent pain and burnout. 

In addition to exercises on land, your physical therapist may suggest aquatic therapy. The warmer water in therapy pools can relax muscles, offer joint relief, and improve circulation.

A physical therapy treatment plan for fibromyalgia may also include massage, the use of a TENS machine, or hot/cold packs to prevent and treat your muscle pain. 

In addition to an exercise plan, your physical therapist can provide helpful education about pain management. The skills they teach can be useful in coping with your fibromyalgia symptoms. 

What’s the best way to find a licensed, competent PT who is familiar with fibromyalgia?

Your doctor may be able to provide a referral to a local physical therapist who has worked with individuals with fibromyalgia in the past. 

Another place you may potentially be able to get referrals is through a local fibromyalgia support group.

If you choose to do your own research, you may wish to look online for a local physical therapist who advertises their work with fibromyalgia and has articles or blogs on their website demonstrating their knowledge of the connection between physical therapy and fibromyalgia.

It’s also usually a good idea to check out their reviews.

Where can you find support groups for those living with fibromyalgia?

If you have fibromyalgia, it’s important to have the support of others who understand what you’re going through. Your doctor or local hospital may be able to suggest an in-person support group near you.

You can also get support online through organizations like the Fibromyalgia Care Society of America.

Another place where you can connect with other people with fibromyalgia is in Meta groups. Research indicates Meta (formerly Facebook) groups can be a source of support for those living with fibromyalgia. But remember that these groups may not always encourage evidence-based approaches to fibromyalgia care. 

Takeaway

If you have fibromyalgia, chronic pain can be debilitating. Physical therapy may help reduce your pain, increase your range of motion, and improve your mental well-being. Your doctor may recommend it in combination with medication and alternative therapies.

A physical therapist can help with pain management and develop an individualized exercise plan that includes a mixture of aerobic and strength-building activities. Tai chi, walking, and swimming are some exercises that may be particularly beneficial if you have fibromyalgia.

Melinda

Reference:

Celebrate Life · Chronic Illness · Family · Health and Wellbeing · Medical · Men & Womens Health · Mental Health

NAMI September Newsletter-Suicide Prevention

Note from NAMI National:

“September is Suicide Prevention Month, when we work to raise awareness about this urgent crisis. Like mental health conditions, suicidal thoughts can affect anyone regardless of age, gender, or background. But suicidal thoughts should not be considered normal and often indicate more serious issues.”

Fast Facts:

Individual Impact

  • 79% of all people who die by suicide are male.
  • Although more women than men attempt suicide, men are 4x more likely to die by suicide.
  • In the U.S., suicide is the second leading cause of death among people aged 10-14, the 3rd leading cause of death among those aged 15-24, and the 12th leading cause of death overall.
  • 46% of people who die by suicide had a diagnosed mental health condition — but research suggests that 90% may have experienced symptoms of a mental health condition.

Community Impact:

Annual prevalence of serious thoughts of suicide, by U.S. demographic group:

  • 8% of all adults
  • 4% Native Hawaiian/other Pacific Islander
  • 2% Mixed/Multiracial
  • 5% American Indian/Alaska Native
  • 13% of young adults aged 18-25
  • 22% of high school students
  • 41% of lesbian, gay, bisexual, transgender, and queer youth
  • The highest rates of suicide in the U.S. are among American Indian/Alaskan Natives, followed by non-Hispanic white people.
  • Lesbian, gay, and bisexual youth are 4x more likely to attempt suicide than straight youth.
  • Transgender adults are nearly 9x more likely to attempt suicide at some point in their life compared to their peers.
  • Suicide is the leading cause of death for people held in local jails.

This Suicide Prevention Month, check in on your loved ones. Knowing the risk factors and warning signs can assist you in finding help for yourself, a loved one, or a friend. You can learn more about this here.

With gratitude,

The NAMI Texas Public Policy Team

Melinda

 

Celebrate Life · Chronic Illness · Family · Health and Wellbeing · Medical · Men & Womens Health · Mental Health · Moving Forward · Survivor

October Awareness Months

For the complete list of Awareness Months click on the link under references. Below are the issues that are most important to me or ones I have a personal connection to for which there are several.

ADHD Awareness Month
AIDS Awareness Month

National Breast Cancer Awareness Month

National Depression Education and Awareness Month
National Depression and Mental Health Screening Month
Sober October
Pregnancy & Infant Loss Awareness Month
National Bullying Prevention Month
Domestic Violence Awareness Month
Dyslexia Awareness Month
LGBTQ+ History Month

Melinda

Reference:

https://www.goodgoodgood.co/articles/october-awareness-days-months

Celebrate Life · Chronic Illness · Health and Wellbeing · Infectious Diease · Medical · Men & Womens Health · Moving Forward

Dr. Dave Martz overcame an ALS death sentence with Lyme treatment

As Dave Martz lay dying, an idea serpentined around his mind and would not loosen its grip: Despite the absolute diagnosis and the insistence of the doctors, including a world expert, that he was dying of ALS, despite his own vow to face things head-on and reject the lure of denial, Martz couldn’t shake the notion that possibly, just maybe, he actually had Lyme disease. (from Cure Unknown: Inside the Lyme Epidemic by Pamela Weintraub.)

One of the earliest Lyme conferences I ever attended featured Dr. Dave Martz and the story of his remarkable recovery from what had been diagnosed as ALS–a fatal condition.

I would later write this about him in my blog:

Kind of a rock star

Dr. David Martz is kind of a rock star in the Lyme world. You may have read about him in Pam Weintraub’s Cure Unknown and seen footage of him in the documentary Under Our Skin.

His story is riveting. He had a lifetime of good health and a successful career as a physician practicing internal medicine-hematology-oncology for 30 years. Then, in 2003, Martz suddenly started experiencing strange symptoms. First deep fatigue, then profound muscle aches and body-wide pain. Soon he was too weak to get out of bed. As his condition rapidly deteriorated, his physicians gave him a devastating diagnosis: ALS (aka Lou Gehrig’s Disease). They said nothing could stem his physical decline and he would likely be dead within two years.

But events went in a different direction. As his health spiraled downward, Martz connected with a Lyme disease specialist who prescribed hard-hitting, long-term antibiotics. The gamble paid off. By the end of 2004, Martz was a new man. In fact, the doctor who had diagnosed him so definitively with ALS, now pronounced that condition completely gone.

Martz devoted the next two and a half years to a project that gave extended antibiotics to about 90 ALS patients and demonstrated objective improvements in 15% of them. He has also treated more than 800 chronic Lyme patients, with good response and minimal side effects.

A message of hope

In 2010, I helped organize a Lyme patient education conference in the San Francisco Bay Area and we had Dr. Martz as our keynote speaker. He was a kind, thoughtful man who offered a message of hope to an audience which sorely needed it.

This week, I learned that Dr. Martz passed away last month at the age of 83. Rest in peace, Dr. Martz, rest in peace.

TOUCHED BY LYME is written by Dorothy Kupcha Leland, President of LymeDisease.org. She is co-author of Finding Resilience: A Teen’s Journey Through Lyme Disease and of When Your Child Has Lyme Disease: A Parent’s Survival Guide. Contact her at dleland@lymedisease.org.

Very interesting read! So glad he had an open mind and thought to seek out a Lyme Literate Doctor, it saved his life.

Melinda

Chronic Illness · Health and Wellbeing · Medical · Men & Womens Health · Self-Care

Numb the Pain by Navigating Chronic Discomfort with Style

Life with chronic discomfort can feel like living out an endless drama, yet its protagonist (that would be you), deserves smoother scenes. Luckily, there are multiple techniques to alleviate persistent pain, providing pockets of relief from daily struggle into a manageable storyline. 

Photo by Gizem Nikomedi on Unsplash

Embrace the Power of Movement

Exercise may make your spine shudder, but physical activity is an excellent way to manage chronic pain. Engaging in low-impact activities such as swimming, yoga, or tai chi can improve circulation, and flexibility and release endorphins. Natural painkillers are made available without an expectation of compensation.

Endorphins Are Like Comedians

Your body’s endorphins act like the stand-up comedians of its own world, helping lighten the mood and make things bearable. Movement produces endorphins which in turn reduce perceptions of pain. So whether it’s taking a daily stroll around your neighborhood or doing some light stretching exercises, find something that makes you want to move, even if that means dancing awkwardly without anyone watching.

Mind Over Matter: Mental Techniques for Relief 

Your mind can be used as an effective weapon, all it needs to be properly deployed. Practices such as mindfulness meditation, cognitive behavioral therapy (CBT), and guided imagery can have profound effects on pain perception while changing our relationship to discomfort.

Mindfulness Magic: Transforming Present into Peace

Engaging in mindful practice means staying present to each moment without judgment, helping to ease stress and anxiety that exacerbate pain. Apps or online resources designed to guide this process could prove invaluable, and your mind and body will thank you.

Harnessing Nature for Alternative Therapies

Incorporating natural methods can often provide what is needed for living with chronic pain. Acupuncture, chiropractic care, and herbal remedies may complement other pain management approaches by offering more holistic approaches.

Pricking Away the Pain: An Acupuncture Adventure 

While Acupuncture may seem strangely offbeat for television dramas, its roots lie deep within traditional Chinese medicine. By strategically placing needles along nerve pathways to reduce pain and promote healing.

Medical Marijuana as a Natural Alternative 

Medical marijuana has emerged as an attractive solution for chronic pain sufferers, thanks to cannabinoids found within cannabis which interact with our bodies’ endocannabinoid system and modulate pain and inflammation. While legal challenges have historically limited medical marijuana’s use, studies show its efficacy for various forms of pain such as neuropathic and arthritis pain relief. Patients often find medical cannabis helps them decrease reliance on traditional painkillers while potentially decreasing adverse side effects. You must consult your healthcare professionals regarding appropriate usage as soon as possible before beginning.

Becoming a Master Chef: Nutritional Tweaks

No one’s suggesting an appearance on a cooking show, rather, what you eat has more power to affect pain levels than you realize. An anti-inflammatory diet may work wonders. Try including foods rich in omega-3 fatty acids like fish, flax seeds, and walnuts in your daily meal plans to reduce inflammation and pain levels. Remember: balance doesn’t mean balancing pizza slices between both hands.

Spice It Up: The Turmeric Tale

Turmeric is one of the greatest spices imaginable, boasting powerful anti-inflammatory effects and rich with curcumin. Add turmeric to dishes, smoothies, or teas for an intoxicating flavor and potential pain relief. But be careful not to mistake it for its competitor, saffron. They both love taking center stage but serve distinct functions.

Conclusion

Chronic pain may be a constant part of life, but exploring different strategies may provide relief. Pain management becomes less exhausting with laughter as your guide and professionalism as your shield. Embrace these tips as creative tools to write a narrative that features discomfort less prominently in it.

This is a collaborative post.

Melinda