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

How to Afford Your Insulin If It Costs Too Much

Insulin prices have risen steadily since the 1990s. In fact, between 2012 and 2016, the cost of insulin increased by 20.7 percent every year. Increases have been slower in recent years, but costs are still on the rise. 

A 2018 survey on insulin affordability from the American Diabetes Association (ADA) found that 39 percent of respondents had seen their insulin prices go up between 2017 and 2018. 

Insulin is a lifesaving medication for people with diabetes. Access to affordable insulin is imperative.

The rising cost of insulin

The rise in insulin prices in the United States may be due to a few factors. One major reason for the cost increase is that the insulin available in the United States comes from only three manufacturers:

  • Novo Nordisk
  • Eli Lilly
  • Sanofi

This allows those manufacturers to set prices and keep those prices high.

The role of pharmacy benefit managers

Prices are also driven up through the use of pharmacy benefit managers (PBMs). PBMs are companies that create and manage the lists of prescription medications that insurance companies cover. These lists are called formularies. 

PBMs give priority to prescription manufacturers that offer large rebates. Manufacturers that offer large rebates are placed on more formularies and are favored by insurance companies. 

More expensive prescriptions can offer larger rebates because their starting costs are so high. This has driven the price of insulin up dramatically.

How this affects people with diabetes

The rising cost of insulin makes it difficult for many people to afford it. According to the ADA survey, 27 percent of respondents said the high cost of insulin changed how much insulin they were able to buy or use. 

For many respondents, these changes included using less insulin than their doctor prescribed by regularly skipping doses or rationing their supply. 

Rationing insulin or skipping doses is very dangerous. It can lead to serious complications such as diabetic ketoacidosis. This complication, which can be fatal, is more common if you have type 1 diabetes and ration your insulin.

However, there are resources available to help you afford the insulin you need. We’ll be discussing several of those resources below.

Pharmaceutical assistance programs

Insulin manufacturers offer pharmaceutical assistance programs to help people afford their insulin. Each major manufacturer has its own program. You’ll need to meet set income requirements to qualify for these programs.

Lilly Cares Foundation Patient Assistance Program

The Lilly Cares Foundation Patient Assistance Program provides free Eli Lilly insulin products for people with a limited income who have Medicare Part D or no insurance coverage. 

The income requirements depend on your state and the specific Eli Lilly insulin your doctor has prescribed. You’ll need to reapply for this program every year.

Novo Nordisk Patient Assistance Program 

The Novo Nordisk Patient Assistance Program assists Medicare enrollees and people with no insurance who have an income at or below 400 percent of the federal poverty level. 

The program provides up to 90 days of free Novo Nordisk insulin to participants. It also offers discounts on insulin once the 90 days are up. Exact prices depend on the specific Novo Nordisk insulin your doctor has prescribed.

Sanofi Patient Assistance Connection

The Sanofi Patient Assistance Connection provides free Sanofi insulin products to people with an income at or below 400 percent of the federal poverty level. 

The program is open to Medicare Part D enrollees and people without insurance. You’ll need to reapply for this program every year. 

Copay coupons and drug cards

Manufacturers also offer copay savings cards. These cards can help reduce the amount you pay out of pocket for your insulin. Unlike patient assistance programs, copay savings cards are available regardless of your income. 

It’s worth noting that Medicare enrollees can’t use copay coupons or drug cards. 

  • Novo Nordisk. Novo Nordisk offers a savings card that reduces the copayments for its products. Your exact savings will depend on the insulin your doctor prescribed, but copayments when using the card range between $5 and $25. 
  • Eli Lilly. Eli Lilly offers the insulin value program. With the program, you can get most Eli Lilly insulin products for $35 per month. You can use the program with or without insurance, and there are no income limits. 
  • Sanofi. The Sanofi copay savings card is for people with insurance. It reduces copayments for Sanofi insulin to between $0 and $10. Those without insurance can join the Valyou Savings Program, which allows people to purchase Sanofi insulin for $99 per month.

Program matching services

Many programs that provide free or low-cost insulin are only available to people who use specific insulins, fall within income guidelines, or live in certain areas. 

You can find the programs that best fit your situation by using one of the matching services below. These services don’t provide direct aid or supply insulin, but they can connect you with resources that will help. 

GetInsulin.org

GetInsulin.org is a service that can match you with ways to afford your insulin. You’ll enter your prescription, income, insurance information, and location to get matched with programs that can help you get the insulin you need. 

The program can also match you with urgent insulin support to get emergency insulin. 

Medicine Assistance Tool

The Medicine Assistance Tool (MAT) is similar to GetInsulin.org. You’ll enter information about your prescription, income, and insurance to get matched with programs that will help you get free or low-cost insulin. 

The MAT can also help you find programs to cover any additional prescriptions you take.

NeedyMeds

NeedyMeds is a database of healthcare information and resources. You can search by your location, condition, and more. Its list of diabetes resources can help you find low-cost or free insulin. 

RxAssist

RxAssist can match you with patient assistance programs that can help you get free or low-cost insulin. You can search for your insulin prescription to get started. 

RxHope

RxHope works just like RxAssist. You can enter your insulin prescription and get matched with patient assistance programs. You can apply for any program you find directly from the RxHope website. 

Coupon sites

Coupon sites, which are free to join, can help make sure you’re always getting the best available price for your insulin. They can reduce your cost significantly.

You can then present a coupon at the pharmacy by using your smartphone or by printing it out. Most coupon sites also offer discount cards that you can present every time you pick up a prescription.

Some popular coupon sites include:

  • Blink Health. Blink Health will help you find the lowest prices for your prescription and can arrange for your insulin to be delivered to your home.
  • GoodRx. GoodRx offers coupons and discount cards.
  • Inside Rx. Inside Rx allows you to search for coupons and sign up for a discount card. 
  • SingleCare. SingleCare allows you to search for prescription coupons that you can bring to the pharmacy with you.

Government assistance

Some states offer pharmaceutical assistance programs. These programs help people with limited incomes afford any prescriptions they take, including insulin. 

Not all states offer these programs, though. In states with programs, the eligibility requirements vary by state. You can check for a program in your state on the Medicare website.

Other ways to save

There are a few other options to help you save money on your insulin. These include:

  • Walmart’s ReliOn Insulin. Walmart carries over-the-counter insulin for $25 per vial. This insulin is an older form of insulin called synthetic human insulin, and using it requires sticking to a strict eating schedule. Talk with a doctor before making this switch.
  • Community health centers. Community health centers often have sliding scale options that allow you to get affordable insulin. You can locate a community health center near you by using this interactive map
  • Pharmacy loyalty programs. Your local pharmacy loyalty program can help provide savings.
  • Your insurance company. If you have insurance coverage, you can call your insurance company and ask them what their preferred insulin is. The cost may be lower if you’re able to switch to the preferred insulin.
  • A doctor. A doctor might be able to provide you with emergency insulin to tide you over. They might also be able to switch you to lower-cost insulin. 

Legislation and the future of insulin affordability

There are multiple efforts underway to reduce the cost of insulin. Lawmakers and advocacy groups alike are working to help people afford insulin. 

The ADA has endorsed three possible pieces of legislation that could affect insulin affordability if they were passed. These are:

  • The Insulin Price Reduction Act. This act would provide incentives for manufacturers to lower the cost of insulin.
  • The Safe Step Act. This act would eliminate insurance company “step therapy” programs that can drive up costs.
  • The Chronic Condition Copay Elimination Act. This act would remove copays for medications used to treat conditions such as diabetes. 

These acts may not pass and become law. However, they’re among the current suggestions to help bring down the cost of insulin. Broader healthcare laws and acts that aim to bring down the cost of accessing care in the United States could also affect the cost of insulin.

The bottom line

The cost of insulin has risen dramatically over the past few decades. Many people have difficulty affording the insulin they need to manage their diabetes. 

However, there are discounts and programs available to help you find free or low-cost insulin. You can also find coupons to help lower your copayments and overall spending.

Melinda

Reference:

Chronic Illness · Health and Wellbeing · Infectious Diease · Lyme Disease · Men & Womens Health · Tick Borne Illnesses

Eyes wide open: Tackling Lyme-induced spatial visual dysfunction

Rachel Leland, who often posts on social media about her Lyme-related experiences, recently visited the Padula Institute of Vision Rehabilitation. She posted the following account of her appointment on Instagram.

What I knew before this week

My eyes have been hurting every single day for quite some time now. The muscles behind my eyes felt a constant pain and strain. I had daily headaches around my eyes and temples.

In college, I had a rare eye condition for a 21 year old that no one should be getting until they are elderly. That specific problem resolved a long time ago. But, my eyesight has been getting significantly worse over the past few years. My contacts prescription is only good for a few months before I need a stronger one.

What I thought before this week

Everything I was experiencing was normal and that everyone’s eyes probably felt like mine, but they just weren’t talking about it. So I should just keep taking Advil each day to manage the pain and keep smiling through everything, like always. If you pretend everything is fine, then it’s fine…right?

What I know now after my appointment

My eyes should not be in pain every day. The muscles behind my eyes should not feel constant pressure and pain just from turning them slightly left and right, or up and down. My eye muscles are spasming each time I try to focus on something, causing me to sway between double vision and seeing just one thing.

My eyes and brain have to work too hard to correct this, which is causing my eyesight to rapidly deteriorate. I should not be slamming my shoulder into the door frame multiple times a week when I walk through doors. My eyesight should not be getting worse every few months.

Spatial visual processing dysfunction

Extensive testing yesterday shows I have spatial visual processing dysfunction and the problems I’ve been experiencing aren’t just with my eyes, they are with how my eyes communicate the information to my brain.

I was originally going to schedule this appointment during the summer, so as not to miss work. But after a phone consultation with the doctor, we learned that this couldn’t wait. I’m so grateful that we listened.

There is no quick fix. A number of changes are coming my way, and it’s been a lot to process and it all feels overwhelming right now. If you have Lyme and are dealing with issues with your eyes, here’s an interview my mom did with this doctor a few years ago:

Rehabilitating your Lyme-impaired vision

Rachel Leland is co-author of Finding Resilience: A Teen’s Journey Through Lyme Disease. On Instagram, she’s @ResilientlyRachel. For more information about Lyme-related eye problems, see the website of the Padula Institute of Vision Rehabilitation.

Melinda

Reference:

Lyme Disease Org

Looking for the Light

Chronic Illness · Health and Wellbeing · Infectious Diease · Lyme Disease · Medical · Men & Womens Health · Tick Borne Illnesses

Lyme Disease Awareness Month-My Experience

Before my diagnosis of Lyme Disease, I would have looked at this graphic and paid no attention. After 18 months of IV Antibiotic Therapy, experiencing unbelievable pain, and cognitive dysfunction. I would be the poster child for the graphic. Lyme Disease kills and it can take you down slowly. I’m blessed to be in remission.

Testing is inaccurate because doctors have The Western Block test, which tests for several strains of Lyme, but only use one or two of the tests available. Interestingly enough all of my tests for Lyme came back negative until years after I’d been in remission.

When you read about Lyme you will hear about the Bulls-eye rash, yes some people do have a round puffy rash emerge but it’s only about 30% of the time. Don’t be bullied into thinking no rash, no Lyme. BS. I did not get the rash and I’m not sure where I picked up a tick.

If you catch Lyme early a 2-4 week treatment of antibiotics will kill the virus. If not caught early, the Spirochetes make their way into your blood-stream looking for an organ to play host. At this point, you’ve entered the Chronic Lyme stage. Your journey will be the fight of your life.

The CDC does not ackowledge Chronic Lyme exisist which means medical insurance companies will not pay for your doctor visits, IV Therapy and many of the other drugs you need. Some of my prescrptions were covered but not any of the suppliments recommened.

When choosing a doctor, look for a Lyme Literate Doctor or an Infectious Disease Doctor. If you run into problems finding the right doctor, visit the ILADS website and request a referral. They are tight with the information because many of the doctors are being targeted for treating Chronic Lyme.

You and your family do not have to go down the rabbit hole. If you firmly believe you or a loved one may have Lyme go directly to one of the most comprehensive lab testing companies, IGenex. It’s worth every penny spent because my treatments cost over $150,000 and caused us to take a second mortgage.

Be Lyme and Tick-Borne Illness aware. Your health depends on it.

Melinda

Looking for the Light

Reference:

www.lymedisease.org

Celebrate Life · Chronic Illness · Health and Wellbeing · Infectious Diease · Lyme Disease · Medical · Men & Womens Health · Tick Borne Illnesses

Babesiosis on the rise in the Mid-Atlantic region of US

A newly published study in the Journal of Medical Entomologyhighlights the growing presence of babesiosis in the Mid-Atlantic region of the United States.

Researchers documented human cases and detected Babesia microti in local tick populations.

Historically concentrated in the Northeast and Upper Midwest, babesiosis is now emerging in areas where it was previously rare.

Key findings indicate that locally acquired babesiosis cases have been reported for the first time in Maryland, Virginia, West Virginia, and Washington, D.C.

Additionally, Babesia microti was detected in ticks collected from Delaware, Maryland, Virginia, West Virginia, and D.C., marking a concerning expansion of the disease. The study also presents Ixodes keiransi as a potential vector—a first in babesiosis research.

Click here to read the press release from the Entomological Society of America

Melinda

Looking for the Light

Lyme Disease Org

Celebrate Life · Chronic Illness · Climate Change/Global Warming · Health and Wellbeing · Infectious Diease · Medical · Men & Womens Health

Lyme advocate Julia Bruzzese remembers when Pope Francis blessed her

Ten years ago, then-13-year old Julia Bruzzese was unable to walk, due to complications of Lyme disease. Her family took her to JFK airport, to see Pope Francis, who visiting the United States at the time.

She made the national news, when the Pope stopped and blessed her.

Now, after the death of Pope Francis, Julie recalls how that moment changed her life. See this report from ABC7 New York:

Melinda

Reference:

https://www.lymedisease.org/bruzzese-pope-blessing/

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

May Awareness Month

May is packed with awareness topics and there are too many to list, you can find the entire list HERE.

ALS Awareness Month

American Stroke Awareness Month

Arthritis Awareness Month

Bladder Cancer Awareness Month

Borderline Personality Disorder Awareness Month

Brain Cancer Awareness Month

Fibromyalgia Awareness Month

Gardening for Wildlife Month

Lyme Disease Awareness Month

Melinda

Looking for the Light 

Reference:

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

Celebrate Life · Chronic Illness · Family · Health and Wellbeing · Medical · Self-Care

Managing Fibromyalgia In Children

If your child feels tired and achy, you may not worry initially. After all, there’s nothing urgent about what seems to be mild, general discomfort. However, if your child is constantly in pain, exhausted, having trouble sleeping, and experiencing intense moods, he/she may have fibromyalgia.

This condition is fairly common in adults, but parents and clinicians may overlook the possibility of juvenile primary fibromyalgia syndrome — that is, fibromyalgia in children.

JUVENILE FIBROMYALGIA SYMPTOMS TO WATCH OUT FOR

Fibromyalgia is a chronic condition characterized by pain and fatigue. According to experts, children will often describe this pain as “stiffness, tightness, tenderness, burning or aching.” This pain can last for months and is often accompanied by other symptoms that affect a child’s overall well-being, energy level, and emotional health, including:

  • Tender spots on muscles
  • Difficulty sleeping and fatigue
  • Aches, including stomachaches and headaches
  • Lack of focus or memory
  • Anxiety and depression

If your child is experiencing these symptoms, you should see a doctor. There’s not one test to confirm it, so he/she will go through a range of tests to rule out other conditions.

Unfortunately, there is no one “cure” for fibromyalgia, which can be frustrating for patients, especially children. If left untreated, symptoms can lead to issues at school or making friends. Many parents describe this as a “vicious cycle” where symptoms continue to feed the condition.

Experts still aren’t sure what causes fibromyalgia or how it develops in the body. Some believe that mixed-up pain signals in the brain cause greater pain chemicals and/or overactive pain receptors. Others think it might be triggered, in part, by an emotional event like an illness, injury or psychological stress. But even if the cause involves emotions, the pain is still real.

HOW CHILDREN CAN COPE WITH FIBROMYALGIA

It’s important to create a support team and get your child’s primary care doctor, pain specialist, psychologist, physical therapist, and teachers on board. The more people are aware of your child’s condition, the more they can help him/her cope with symptoms at home and school. You may also want to look for pain support groups near you, for both your child and you as a parent.

Your doctor can help you decide whether medication, such as anti-inflammatories, antidepressants, or nerve pain medications, may be right for your child. He or she also may recommend therapies like injections or topical creams. In conjunction with these interventions, your doctor will probably prescribe treatments like physical therapy and behavioral changes, which are crucial to long-term management of fibromyalgia.

Let’s go over some nonpharmacological strategies for coping with fibromyalgia.

FIVE STRATEGIES FOR IMPROVED SYMPTOMS

Although fibromyalgia may disrupt your child’s life, affecting school and friendships, you may be able to improve your child’s quality of life with these natural therapies and changes. Of course, there’s no cure for fibromyalgia, but by managing symptoms, you can help your child get back to some sense of normalcy.

  1. Get moving!

Exercise can be incredibly valuable for managing your child’s fibromyalgia symptoms. Exercise can relieve muscle stiffness and tire out the body physically so that your child can fall asleep more easily. In particular, pool exercises have been shown to help patients because the warm water can have a soothing effect on pain and also promote blood circulation.

Consider signing up your child for swim class to get regular exercise that is both fun and good for symptoms. Start with limited intervals of exercise at first, and slowly increase them as symptoms allow. Aquatic physical therapy can be extremely beneficial for patients whose fibromyalgia is too severe for regular pool activities.

  1. Incorporate meditation methods

While your child may not be interested in meditation, try to incorporate some of the practices in your child’s daily life. After playtime, encourage your child to take a moment to relax and reset. In addition, teach your child how to use relaxing breathing exercises when he/she feels overwhelmed during school or before bed.

Studies show that meditation can help reduce fibromyalgia patients’ stiffness, anxiety and depression. In the least, promoting a stress-free environment and creating a sense of relaxation will help your child feel less anxious.

  1. Say goodnight to fibromyalgia

Your child’s sleep routine is essential for improving fibromyalgia symptoms. Chart out the best routine for your child together. Make sure he/she goes to bed at the same time every day and start “sleep-ready” habits an hour before bed. This routine could include a break from screen time, reading a story together, listening to a relaxing song and/or taking a hot bath. Promoting a relaxing environment will help your child get to sleep.

Make sure you’re not giving your child food late at night, especially items with any caffeine or sugar. Also, be sure take away tablets and cell phones. The blue light can wake up your child instead of helping him/her get sleepy. Sufficient sleep is essential to managing pain.

  1. Change your child’s diet for success

Some experts recommend following an anti-inflammatory diet to prevent aches and pains. In general, an anti-inflammatory diet is based on the Mediterranean diet, which emphasizes fish, fish, vegetables, whole grains, and olive oil.

Update your child’s lunch to include a handful of nuts, or add an apple for a snack. Anytime you can add fruits and vegetables to his/her diet, do it! This boost of nutrients will fuel your child for success. Try to limit junk food as well, which has no value and could actually inflame your child’s pains.

  1. Schedule your child for a physical therapy session

Your child could benefit from seeing a physical therapist or chiropractor near you. Recent studies show how physical therapy or chiropractic can have a positive impact on fibromyalgia patients. Finding the right physical therapist is important. Call in advance to ensure they have experience with fibromyalgia and/or with children. Specific exercises in physical therapy can help to improve your child’s core strength and incorporate techniques to soothe muscle aches and pain. Similarly, regular massage therapy sessions with an experienced masseuse can improve your child’s exercise, sleep and mood.

TALK TO YOUR DOCTOR

A fibromyalgia diagnosis can be challenging, but doesn’t have to take over your child’s life. It’s a good idea to talk to an expert to come up with the most effective care plan for your child, one that ideally includes a diverse range of strategies, like those listed above. Together, you can talk about your child’s specific issues and needs, and figure out the best way to improve symptoms.

About Dr. Brent Wells

Dr. Brent Wells is a graduate of the University of Nevada where he earned his bachelor of science degree before moving on to complete his doctorate from Western States Chiropractic College. He founded Better Health Chiropractic and Physical Rehab in Anchorage in 1998. He became passionate about being in the chiropractic field after his own experiences with hurried, unprofessional healthcare providers. The goal for Dr. Wells is to treat his patients with care and compassion while providing them with a better quality of life through his professional treatment.

Melinda

Repost

Chronic Illness · Infectious Diease · Medical · Men & Womens Health · Tick Borne Illnesses

A mother’s story: When “just anxiety” was really Lyme disease

By Whitney Goetsch

I was a young mother living my dream life when everything changed. At a wedding, I absentmindedly pulled a tick off the back of my leg, crushed it into the pavement, and moved on.

I never realized that tiny creature would alter the course of my life.

Not long after, my health began to unravel. Crippling symptoms emerged, yet every doctor I saw dismissed them as anxiety. But deep down, I knew something was terribly wrong.

What followed was a terrifying descent into medical uncertainty, a relentless fight to uncover the truth while my body continued to deteriorate.

For five years, I battled through a system that refused to listen, all while my family suffered alongside me. I suspected Lyme disease early on, but each time I voiced my concerns, I was brushed aside. “It’s just anxiety.” “You’re overreacting.” “Maybe it’s depression.” The gaslighting was endless.

Finally, after years of searching, I received the diagnoses that changed everything: Lyme disease, multiple co-infections, and alpha-gal syndrome. By then, the damage had already been done.

Documenting every struggle

Throughout this journey, I kept a journal, documenting every struggle, every setback, and every moment of resilience. In 2023, newly diagnosed and still fighting for my life, I turned those pages into a book—because this cannot not keep happening. Not to young mothers. Not to fathers, children, or anyone else. The cycle of medical dismissal and gaslighting must end.

I wrote my book while still in the fight, in the trenches of this disease, so it would be raw, real, and relatable. So others would know they are not alone.

You are not Lyme. You are not a burden. Lyme is the burden placed upon you.

Today, my battle continues. In the summer of 2024, I began SOT therapy for Lyme disease. This winter, I started SOT therapy for Babesia and Bartonella, alongside herbals and methylene blue.

Recent tests have revealed demyelination and autoimmune markers resembling those seen in multiple sclerosis and Alzheimer’s — the result of years of untreated infections.

To help heal my brain and reduce inflammation, I will soon begin peptide therapy. My medical team is also exploring stem cell therapy in Europe. The road ahead remains steep, but I refuse to give up.

Because this fight is not just for me. It’s for every person who has been dismissed, misdiagnosed, and left to suffer in silence.

For more information about Whitney Goetsch’s book, click here: Waves: A Memoir of Perseverance in Battling Chronic Lyme Disease


Melinda

Reference:

https://www.lymedisease.org/just-anxiety-lyme/

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

What Science Says About the Link Between Fibromyalgia and Migraine Episodes

While it’s not yet fully understood, research shows a strong connection between fibromyalgia and migraine symptoms. 

In 2021, chronic pain affected over 51 adults in the United States alone. Over 17 million of those adults experienced debilitating chronic pain that restricted their daily activities.

Both fibromyalgia and migraine episodes can cause chronic pain that makes it difficult to function from day to day. And for people who have both conditions, research suggests that fibromyalgia may even make migraine symptoms worse and more frequent.

Below, we’ll explore what science says about the relationship between fibromyalgia and migraine, including what treatment options are available for both.

Is there a connection between fibromyalgia and migraine episodes?

Research shows that fibromyalgia and migraine often occur together and that fibromyalgia can affect the frequency and severity of migraine episodes in people who have both conditions.

The following studies demonstrated a connection: 

  • In one study from 2019, researchers found that migraine symptoms were twice as prevalent in people with fibromyalgia versus those without. And in study participants who experienced migraine episodes, the risk of fibromyalgia was up to 1.5 times higher.
  • similar study found that over 30% of participants with migraine symptoms also had fibromyalgia, with the condition being more prevalent in those with chronic migraine and migraine episodes with auras.
  • Several studies also found that fibromyalgia may affect migraine frequency and severity. In one study from 2018, fibromyalgia was associated with higher headache severity and higher migraine-related disability.
  • Another study from that same year found that participants with both migraine and fibromyalgia experienced more frequent and painful migraine episodes, as well as lower quality of life.

Most of the studies on fibromyalgia and migraine don’t distinguish between different migraine types, such as complex or ocular migraine. However, some of the research does suggest that people with chronic migraine and migraine with aura may be more affected.

What’s happening in the brain when you have fibromyalgia?

Fibromyalgia is a chronic health condition that’s characterized by body-wide pain and tenderness, chronic fatigue, and difficulty sleeping.

Researchers aren’t entirely sure of what causes fibromyalgia, but evidence suggests that it affects the way the nerves of the brain receive and transmit information related to pain. Because of this, people with fibromyalgia appear to be more sensitive to pain than those without the condition.

What medications help with fibromyalgia and migraine episodes?

First-line treatment for fibromyalgia and migraine generally involves medications that reduce pain.

While there’s no cure for fibromyalgia, there are four medications commonly prescribed to help manage pain:

Research has shown that roughly a quarter of people living with fibromyalgia can find pain relief with these medications.

Migraine treatment also involves a combination of pain medications and other medications that may be helpful for reducing migraine frequency. Medications for migraine include both preventive and acute episode medications.

Preventive medications include:

Acute migraine episode medications include:

If you have both fibromyalgia and migraine, a combination of medications may help reduce your symptoms. However, you and your doctor will work closely together to decide which treatment options work best for you.

Alternative treatments for fibro pain and migraine episodes

Complementary and integrative treatments may also be helpful in reducing pain and improving the quality of life in people living with fibromyalgia and migraine episodes.

One review from 2020 ound that acupuncture was beneficial for reducing pain in people living with chronic pain conditions, including chronic migraine. And additional research suggests that acupuncture may also be helpful for reducing pain due to fibromyalgia.

In another review from 2019 researchers found that activities like yoga and tai chi appear to help reduce migraine frequency and severity. Research also suggests that activities like yoga may be helpful in reducing fibromyalgia pain and improving functioning and mood.

Other complementary treatments that may be helpful for chronic pain conditions like fibromyalgia and migraine include therapeutic massage, mindfulness, and certain supplements. However, researchers are still exploring just how effective these approaches can be for these conditions. 

Living with fibromyalgia

Over 4 million adults in the United States — or roughly 2% of the population ― live with fibromyalgia. If you or someone you love has been recently diagnosed with the condition, you can check out these resources that offer education and support:

Takeaway

Research shows that fibromyalgia and migraine commonly occur together and that having one of these conditions may increase the risk of having the other. 

Studies also show that for people who experience migraine episodes, fibromyalgia may affect the frequency and severity of those episodes.

Medication is the most common treatment approach for helping manage pain in both fibromyalgia and migraine. However, several other complementary approaches could be beneficial for reducing chronic pain levels and improving the quality of life in people with both conditions.

I know the pain of both Fibromyalgia and Migraines and they are both difficult to manage. I found that a multi-prong approach works best for me along with good sleep habits and daily self-care practices.

Melinda

Repost

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

Multiple Sclerosis vs. Fibromyalgia: Differences in Signs and Symptoms

Both MS and fibromyalgia may cause chronic pain and fatigue, they are very distinct conditions. A correct diagnosis is important to ensure proper treatment.

Multiple sclerosis (MS) is an autoimmune neurological condition that destroys the protective coating (myelin) that surrounds the nerves. MS destroys the myelin and eventually causes the nerves to no longer be able to function as they should. 

Fibromyalgia is characterized by musculoskeletal pain that affects the entire body. In addition to chronic pain, fibromyalgia causes increased drowsiness and fatigue, as well as mood and memory issues. 

They are very different conditions, but they sometimes share similar symptoms.

Both conditions require a variety of medical tests for a diagnosis. Before you begin any tests, you may be able to distinguish your symptoms and decide if they’re signs of one of these conditions. Your doctor can help, too.

What are the symptoms?

While these two conditions share some symptoms, they also have distinct symptoms of their own. These include:

SymptomFibromyalgiaMS
chronic pain
fatigue
memory issues
difficulty walking
slurred speech
vision problems
numbness and tingling
trouble concentrating
depression

Fibromyalgia symptoms

Pain associated with fibromyalgia is chronic and widespread. It’s described as a dull, aching pain. To be classified as fibromyalgia, a person must experience the chronic pain for at least 3 months. Also, the pain must occur on both sides of the body, above and below the waist.

Other symptoms of fibromyalgia include:

  • Memory issues: “Fibro fog” is a term applied to the confusion, difficulty focusing and concentrating, and changes in memory that people with fibromyalgia often experience.
  • Mood changes: Depression is not uncommon in people with fibromyalgia. Also, people with fibromyalgia sometimes experience sudden shifts in mood.
  • Chronic fatigue: Fibromyalgia causes a great deal of fatigue. People with fibromyalgia are prone to long periods of sleep and rest. However, many people with fibromyalgia also have sleep disorders, such as sleep apnea and restless leg syndrome.

MS symptoms

MS destroys the protective coating around your nerves and eventually the nerves themselves. Once damaged, the nerves may not be able to feel or experience sensations as well as healthy nerves.

The symptoms associated with MS vary depending on the amount of nerve damage and which nerves are affected. It’s common for people who have MS to have significant chronic pain, eventually experiencing numbness and weakness in affected areas. Tingling and mild pain can occur, too.

Other symptoms of MS include:

  • Difficulty walking: You may develop an unsteady gait and have trouble walking. Coordination and balance are also challenged.
  • Slurred speech: As the myelin is worn away, communication from the brain may slow down. This can make speech seem more difficult, and you may have a harder time speaking clearly.
  • Vision problems: Vision disturbances like double vision and complete or total vision loss can occur. Eye pain is common, too.

Diagnosing fibromyalgia and MS

Diagnosing either condition can be difficult for doctors. In many cases, a doctor will come to one or the other condition after they’ve ruled out other possible causes for your symptoms.

Diagnosing fibromyalgia

Fibromyalgia is diagnosed if your doctor can’t find any other explanation for your whole-body pain. The pain will also need to have occurred for at least 3 months.

There’s no specific test that can be used to diagnose fibromyalgia. Instead, a doctor will make a diagnosis off a group of symptoms, one of which is widespread pain. 

Doctors often also use “tender points” to diagnose fibromyalgia. What this means is that people with fibromyalgia feel additional pain when a doctor applies firm pressure to these sensitive points on the body.

Diagnosing MS

MS isn’t diagnosed with a single test or procedure. If other conditions are ruled out, an MRI can detect lesions on your brain and spinal cord. Additionally, your doctor may conduct a spinal tap

During this procedure, your doctor will remove a small sample of spinal fluid and test it for antibodies that are associated with MS.

The differences in treatments

Once a diagnosis has been made for either fibromyalgia or MS, your doctor will suggest different treatments to help treat symptoms and improve your quality of life. Just as the two conditions are different, treatment options for the two conditions differ.

Fibromyalgia treatment

There are a variety of different types of treatment options for fibromyalgia, including over-the-counter (OTC) drugs, prescription medications, and alternative treatments.

OTC solutions include:

Prescription medications include:

  • antidepressants, such as duloxetine (Cymbalta)
  • antiseizure medications, such as pregabalin (Lyrica)

Alternative treatments include:

Lifestyle changes include:

MS treatment

As with fibromyalgia, there are a variety of treatments available for those with MS. These prescription treatments can reduce the inflammation and slow or change the course of disease progression. 

Other treatments can help with symptom management and improve a person’s quality of life. These include OTC medications, alternative remedies, and lifestyle changes.

OTC medications, which are used to help relieve musculoskeletal pain, include:

  • aspirin
  • acetaminophen (Tylenol)
  • ibuprofen (Advil, Motrin)

Prescription medications and interventions include:

  • injectable medications, such as Avonex or Extavia
  • oral medications, such as Aubagio and Tecfidera
  • infused medications, such as Lemtrada
  • high doses of Solu-Medrol (a steroid) for relapse management
  • physical therapy for rehabilitation
  • speech language pathology

Alternative treatments include:

  • acupuncture
  • stress management
  • cognitive behavioral therapy

Lifestyle changes include:

  • eating a nutrient-dense, well-balanced diet that includes omega-3 fatty acids and is high in fiber and low in saturated fat
  • exercising regularly, including stretching

No matter what method of treatment you’re currently on, discuss any new changes in your treatments with your doctor before you start them, even if they’re considered “natural” or “safe.” These could interfere with treatments or medications you’re currently taking.

Outlook for each condition

Both MS and fibromyalgia are currently chronic, incurable conditions. Though treatments can alleviate symptoms and improve your overall quality of life, there are no cures available for either condition, and both tend to advance with time.

Fibromyalgia

Fibromyalgia is not fatal. Because medications are limited, lifestyle and alternative remedies are an important part of treatment management.

In general, people with fibromyalgia who adapt to necessary lifestyle changes coupled with the help of medications can experience significant improvement in their symptoms.

MS

Most people with MS will have an equivalent or almost equivalent life expectancy to that of the average person without MS. However, this isn’t generally the outlook for rare cases of severe MS. 

People with MS may develop cancer or heart disease just like people without MS.

Symptoms in people with MS can be unpredictable, though most will see some amount of disease progression as time goes on. People with MS who experience more time between symptom attacks and relapses tend to do better and experience less severe symptoms.

Takeaway

Though they sometimes share similar symptoms, MS and fibromyalgia are two very different conditions. Understanding the differences can help you and your doctor start testing for the right condition earlier.

If you have unexplained symptoms that resemble one or both of these conditions, make an appointment with your doctor. They can begin investigating your symptoms to diagnose the cause and get you the treatment you need.

Both of these conditions are likely to be life changing. As is true with many other conditions, getting treatment as soon as possible can help increase your comfort and quality of life. It can also potentially slow down the onset or advancement of symptoms.

Melinda

Reference:

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

10 Tips for Managing Nighttime Joint Pain

Joint pain may worsen during the night due to fluid buildup or chemical processes in your body that cause inflammation. But at-home treatments and adjustments to your daily and nighttime routines may help you get a good night’s sleep.

If you have a condition that causes joint pain, you may have found that the pain can be worse at night. Joint pain at night is not usually a medical emergency. But it can severely limit your ability to get a good night’s sleep.

Most joint pain is due to arthritis, inflammation of the joints. This includes:

According to the Arthritis Foundation, 4 in 5 people with arthritis have trouble sleeping.

But other common conditions can also contribute to joint pain at night, such as:

Cytokines

At night, some of your cells release cytokines, small proteins that help activate your immune system. Some cytokines help to make you sleepy. But they can also generate inflammation, which can increase joint pain.

Body position

Your sleep position can put pressure on joints, making existing joint pain worse. For example:

  • If you have hip or shoulder pain on one side of your body, try to avoid putting pressure on that joint by sleeping on your other side.
  • You can worsen wrist pain if you sleep with your wrists bent.
  • Neck pain may worsen if you’re a stomach sleeper and your neck remains twisted to one side for hours at a time.

Mattress and pillow

Your mattress and pillow may also be part of the problem. A too-soft, unsupportive mattress may not provide enough cushioning to support the proper alignment of your spine. This can put pressure on tender joints.

If your pillow is too high, too low, or lumpy, it may force you to hold your neck and shoulder joints in an unnatural position while sleeping. This can irritate your nerves and generate joint pain.

How can I manage joint pain at night?

The underlying cause of joint pain may determine how best to manage it. For example, if you have jaw pain due to a temporomandibular joint (TMJ) disorder, wearing a night guard might be a good way to reduce it.

You can typically manage joint pain at night with at-home treatments. A trial-and-error approach may be needed before you learn what works best for you. Here are 10 things to try:

1. Exercise 

Strong, supple muscles help take pressure off of painful joints. Exercises like stretching and yoga can help people with conditions like rheumatoid arthritis or osteoarthritis. Other good choices include:

You may consider working with a physical therapist on exercises for specific joints and muscle groups.

2. Apply heat 

Some people find that using heating pads or compresses on painful joints before sleep provides nighttime relief. You may also find that taking a warm bath before bed reduces pain and provides relaxation.

When you apply heat to an aching joint, the blood vessels in that area increase in size. This increases blood and oxygen circulation in and around the joint, reducing stiffness and pain.

If your joint pain is due to an injury, check with a healthcare professional before using heat. For injuries, applying cold during healing may be a better choice.

3. Apply cold

Cold packs decrease blood flow to the joint, reducing swelling and inflammation. The numbing sensation caused by applying cold or cool compresses can also help reduce pain.

Try using a cold pack directly on the painful joint for 10 to 20 minutes before going to sleep. You can also try immersing yourself in a cold or cool bath for as long as you feel comfortable.

4. Try over-the-counter (OTC) pain medication

OTC pain relievers, including those that reduce inflammation, may be helpful. These include acetaminophen (Tylenol) and nonsteroidal anti-inflammatory drugs (NSAIDs) like aspirin or ibuprofen. Look for extended-relief versions that last for 8 hours or more, so your pain doesn’t return during the night.

Make sure to follow package directions and don’t overuse. If OTC pain meds aren’t enough, talk with a healthcare professional about prescription drugs for pain.

If you have high blood pressure, heart disease, or kidney disease talk with a doctor about which OTC pain reliever would be best for you. Some may cause you to retain water, which can cause kidney problems or raise your blood pressure.

5. Use topical treatments

Topical treatments are medications you apply directly to your skin. Some ointments can provide targeted pain relief. Look for gels, sprays, and lotions that contain active ingredients such as:

  • Menthol: Menthol can provide a cooling sensation to your skin, helping to mask pain.
  • Camphor: Camphor can provide both cool and warm sensations to your skin and numb nerve endings.
  • Arnica: Arnica has anti-inflammatory properties and supports enhanced circulation.
  • Capsaicin: Capsaicin reduces the amount of a specific pain transmitter in your nerves.
  • Salicylates: These plant-based chemicals can help reduce inflammation.

6. Consider glucosamine and chondroitin supplements

Glucosamine and chondroitin are compounds found in cartilage, the connective tissue that cushions and surrounds your joints. Research into their benefits for joint pain has produced mixed results. But some people find that taking these supplements as directed helps to reduce joint pain from osteoarthritis.

Since the Food and Drug Administration (FDA) does not regulate supplements, be sure to look for the “USP-verified” mark on these products. That means it’s from a trusted manufacturer.

7. Meditate

If joint pain wakes you up at night, it can be hard to go back to sleep. But research suggests that meditation may help you manage chronic pain of all types, especially during the night and before bed.

2018 review of studies found that meditation changes the way your brain processes pain signals, reducing your sensitivity to pain. It can also reduce anxiety and help you relax.

Many gyms and yoga studios offer classes and workshops in meditation. There are also meditation apps to guide you through long and short meditation exercises.

8. Upgrade your mattress and pillow

If your current mattress is too soft or older than 8 years old, consider getting a newer model suited for joint pain relief.

You may also benefit from a pillow designed to reduce knee or neck pain.

9. Create a soothing sleep environment

Proper sleep hygiene habits won’t necessarily reduce joint pain, but they will make it easier for you to fall asleep, despite it.

Ensure your room is dark, cool, and quiet. Turn off electronic devices at least 1 hour before trying to sleep. You may also benefit from listening to relaxing music, meditating, or reading a good book before you turn the lights out.

Aromatherapy may also be helpful for soothing sore joints and for promoting relaxation.

10. Move and stretch when you wake up

Morning stretches won’t necessarily help you with nighttime pain, but they may help relieve stiffness and pain when you first wake up. Moving right when you wake up helps to move fluids out of inflamed joints and reduces swelling.

Try stretching your arms and legs and flexing your fingers and ankles before you get out of bed. You can do this with your knees bent, lying chest-down, or sitting.

When to contact a doctor

Chronic nighttime pain can cause sleep deprivation and exhaustion. It may also significantly reduce your ability to partake in daily activities and enjoy life. Let a healthcare professional know if your joint pain doesn’t respond to at-home treatments.

See a doctor if you notice any of the following symptoms:

  • You have intense joint pain that lasts for several weeks or longer.
  • Pain is waking you up from sleep consistently.
  • You experience sudden swelling or warmth around the joint or can’t move it easily.
  • Your joint pain is accompanied by fever.

A doctor may prescribe oral, topical, or injected medications to help reduce your symptoms.

Takeaway

Joint pain at night has various underlying causes, from injuries to arthritis. It can be exhausting and debilitating. But you don’t need to live with pain.

Many at-home treatments, such as OTC medications and heat or cold compresses, can help. Lifestyle changes like exercising or improving your sleep hygiene can also help.

If your joint pain is severe or doesn’t respond well to at-home treatments, visit a healthcare professional. They can assess your symptoms and provide further treatment options.

Melinda

Reference:

Celebrate Life · Chronic Illness · Health and Wellbeing · Infectious Diease · Lyme Disease · Medical · Men & Womens Health · Tick Borne Illnesses

Lyme Resources To Help Figure Out Your Next Move

One of the most important things a person with Lyme disease needs is clear, concise information.

Here’s a list of useful resources to get you going in the right direction.

LymeDisease.org is one of the foremost Lyme patient advocacy organizations in the United States. We provide a wealth of information on our website–about ticks, Lyme and other tick-borne diseases, prevention, diagnosis and treatment.

Special features include:

Symptom Checklist: Patients can answer a series of questions, print out the filled-in form and take it to their doctor. The printout describes basic facts, explains the two standards of care for Lyme disease, and endorses the ILADS guidelines. It’s a way to help your doctor help you.

Physician Directory: Find a Lyme-literate practitioner near you.

Our blogs keep the Lyme community up to date on news, analysis, and opinion.

Social media. We spread the word via FacebookTwitterInstagram and Pinterest.

Our free weekly email newsletters keep you informed on Lyme-related developments. Click here to sign up.

US National Lyme Online Support Group: Information and emotional support for people dealing with Lyme and other tick-borne diseases.

MyLymeData patient registry: This big data research project allows patients to privately pool information about their Lyme disease experiences. So far, more than 17,000 people have enrolled in the project, providing millions of data points on Lyme disease demographics, tick bites, diagnosis, symptoms, lab tests, co-infections, treatment and quality of life. Add your Lyme data to MyLymeData to help find a cure for Lyme disease.

Lyme disease posters

Children and Lyme disease

Basic info about children with Lyme disease 

Gestational Lyme disease LymeHope, a Canadian Lyme advocacy organization, has taken a particular interest in the issue of mother-to-fetus Lyme transmission.

LymeAid4Kids–Financial assistance for Lyme treatment for those under age 21.

Lymelight Foundation–financial assistance for Lyme treatment for children and young adults through age 25.

LivLyme Foundation–Financial grants for children with Lyme disease (under 21).

Mothers Against LymeAdvocacy and education about congenital and childhood Lyme

Video: Lyme Disease & Pregnancy: State of the Science & Opportunities for Research

Book: When Your Child Has Lyme Disease: A Parent’s Survival Guide  by Sandra Berenbaum and Dorothy Kupcha Leland.

Book: Brain Inflamed: Uncovering the Hidden Causes of Anxiety, Depression, and other Mood Disorders in Adolescents and Teens  by Dr. Kenneth Bock.

Book: Protecting Your  Child From the Child Protection System, by Beth Alison Maloney

Book: Finding Resilience: A Teen’s Journey Through Lyme Disease, by Rachel Leland and Dorothy Kupcha Leland.

Article: Healthy Mom Best Prescription for Healthy Baby (The Lyme Times) (PDF)

Wrightslaw.com–Website with information about Special Education law.

PANS/PANDAS

ASPIRE: The Alliance to Solve PANS and Immune Related Encephalopathies

New England PANS/PANDAS Association

Northwest PANDAS/PANS Network

PANDAS Network

Moleculera Labs

Three books by Beth Alison Maloney:  Saving Sammy,  Childhood Interrupted: The Complete Guide to PANDAS and PANS, and Protecting Your Child from the Child Protection system (The author of these books is the mother of a child who healed from PANDAS. She is an attorney/advocate for the recognition and treatment of PANS/PANDAS, and advises parents about legal issues related to PANS/PANDAS and other complex medical conditions.)

Parenting with PANS

Ticks

Types of ticks

How to protect yourself from ticks

Find the repellent that’s right for you (EPA website)

Help! I’ve gotten a tick bite. Now what?

TickEncounter Resource Center—University of Rhode Island

Tick testing. There are various places to get ticks tested. Here are several: IGeneXTickCheckTicknologyTick Report

MilTICK—free tick testing and identification service available for ticks removed from Department of Defense (DoD) personnel and their dependents. 

Mast cell activation syndrome and food-related issues

MCAS, when your immune system goes haywire

The agony of mast cell activation syndrome (MCAS)

Healing from mast cell activation syndrome

What to eat when you’re allergic to everything?

Severe weather can worsen mast cell activation syndrome

Alpha-gal syndrome

There is growing evidence that certain types of tick bites can trigger alpha-gal syndrome (AGS) a life-threatening allergy to red meat and meat-related products.

Alpha-gal syndrome–symptoms, diagnosis, treatment

Tick-Borne Conditions United

Alpha-gal Information Website

Other Lyme-related symptoms & issues

Lyme carditis and heart block

Lyme disease can affect the heart in complicated ways

Lyme disease and cognitive impairments

Gastrointestinal manifestations of Lyme

Psychiatric manifestations of Lyme 

Lyme disease and hearing loss

Lyme and multiple sclerosis 

Lyme and allodynia 

Medical marijuana and Lyme disease 

The dreaded Jarisch-Herxheimer reaction

How Lyme disease can affect your vision

12 ways you can help yourself manage chronic pain  

Morgellons

The Charles E. Holman Morgellons Disease Foundation

Morgellons: The legitimization of a disease (book review)

Skin Deep: The Battle Over Morgellons (documentary film)

Treating Lyme disease with disulfiram

What is disulfiram and why does it spark excitement in Lyme community?

Treating psychiatric Lyme symptoms with disulfiram

Co-infections

The Lyme Times Special Issue on Co-infections (PDF)

About Lyme disease co-infections

Co-infections poster

Mold

Lyme and mold 

Survivingmold.com

Dealing with Lyme disease and mold illness at the same time

Mold Testing Guide (How to test your home for mold)

Your guide to mold in your home

Clean indoor air on a budget

Are you unknowingly ingesting toxic mold?

How to donate blood and tissue for Lyme research

Lyme Disease Biobank

Lyme and pets

Basic information about Lyme and pets

Parasite prevalence maps Educational website includes a US map down to the county level, showing where dogs have tested positive for Lyme, anaplasmosis, erhlichiosis and other diseases. Also, information about protecting your pet from tick-borne diseases.

Companion Animal Parasite Council website has comprehensive information about how to protect your pets from ticks and other parasites.

Books (Treatment, healing modalities, family life)

Brain Inflamed: Uncovering the Hidden Causes of Anxiety, Depression, and Other Mood Disorders in Adolescents and Teensby Dr. Kenneth Bock

CHRONIC: The Hidden Cause of the Autoimmune Pandemic and How to Get Healthy Againby Dr. Steven Phillips and Dana Parish

Conquering Lyme Disease: Science Bridges the Great Divide, by Brian A. Fallon, MD, and Jennifer Sotsky, MD

The Deep Places: A Memoir of Illness and Discovery, by Ross Douthat. The New York Times columnist delves into his personal years-long battle with chronic Lyme disease.

Finding Resilience: A Teen’s Journey Through Lyme Disease, by Rachel Leland and Dorothy Kupcha Leland. Based on the journal Rachel kept during the worst years of her illness, with additional insights from her mother, Dorothy.

How can I get better? An Action Plan for Treating Resistant Lyme and Chronic Disease, by Dr. Richard Horowitz

The Lyme Diet, by Dr. Nicola McFadzean. What to eat while healing from Lyme.

Recovery from Lyme Disease: The Integrative Medicine Guide to Diagnosing and Treating Tick-Borne Illnessby Dr. Daniel Kinderlehrer.

TOXIC: Heal Your Body from Mold Toxicity, Lyme Disease, Multiple Chemical Sensitivities, and Chronic Environmental Illness, by Dr. Neil Nathan.

When Your Child Has Lyme Disease: A Parent’s Survival Guide  by Sandra Berenbaum and Dorothy Kupcha Leland.

Why Can’t I Get Better? Solving the Mystery of Lyme and Chronic Disease, by Dr. Richard Horowitz.

Books (History, Policy, and Science)

Bitten: The Secret History of Lyme Disease and Biological Weapons, by Kris Newby

Cure Unknown: Inside the Lyme Epidemic, by Pamela Weintraub.

Lyme: The First Epidemic of Climate Changeby Mary Beth Pfeiffer.

Film and Video

I’m Not Crazy, I’m sick, Lyme documentary, available on various streaming services.

The Quiet Epidemic, documentary film about chronic Lyme disease, available on various streaming services.

Under Our Skin, award-winning Lyme documentary film.

Under Our Skin 2: Emergence (sequel)

The Red Ring, documentary takes a global look at Lyme disease.

Your Labs Are Normal, feature film based on real-life experiences.

Financial assistance

LymeTAP.com–Lyme Testing Access Program. Financial assistance for Lyme diagnostic testing.

Needymeds.com–Clearing house for information about various kinds of financial assistance for obtaining medication.

Lymelight Foundation–financial assistance for Lyme treatment for children and young adults through age 25.

Lyme Treatment Foundation–financial assistance for Lyme treatment. No age restrictions.

LivLyme Foundation–Financial grants for children with Lyme disease.

LymeAid4Kids—grants for young Lyme patients (up to age 21).

Partner in Lyme—grants for Lyme treatment for residents of Connecticut.

Applying for Social Security benefits for Lyme disease

Outside of the United States

ALCE Asociación de Lyme Crónico España (Spain)

Canadian Lyme Disease Foundation

LymeHope (Canada)

LYRI (Mexico)

Lyme Disease Action (UK)

LymeDiseaseUK

Lyme Disease Association of Australia

Karl McManus Foundation (Australia)

France Lyme

Tick Talk Ireland

Lyme Poland

Association Luxembourgeoise Borréliose de Lyme (Luxembourg)

Onlyme-aktion.org  (Germany)

Lymevereniging (Netherlands)

TOUCHED BY LYME is written by Dorothy Kupcha Leland, LymeDisease.org’s Vice-president and Director of Communications. She is co-author of When Your Child Has Lyme Disease: A Parent’s Survival Guide. Contact her at dleland@lymedisease.org .

Melinda

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

5 Things I Didn’t Know About Taking Mood Stabilizers

Written by Sally Buchanan-Hagen

Mood stabilizers help keep my bipolar symptoms in check, but they still affect some areas of my life in unexpected ways.

In a previous blog, ‘6 Things I Didn’t Realize About Taking Antipsychotics’, I wrote about some of the impacts that taking antipsychotics can have on your life. But I don’t just take antipsychotics for my <a href=”http://DON’T GIVE UP, MARY! I have had so many bad days, weeks, months, and years even, but when you stick it out, things always get better–sometimes much better than you ever imagined. I encourage you to contact the SUICIDE PREVENTION LIFELINE at 1-800-273-8255. They also have an online chat here: http://chat.suicidepreventionlifeline.org/GetHelp/LifelineChat.aspx. I’ve been in that space before, Mary, and it gets better. I PROMISE! Depression tricks us into believing the world is better off without us, but I PROMISE YOU, THE WORLD IS BETTER OFF WITH YOU IN IT! Please stay…and please stay in touch. bipolar disorder. I also take mood stabilizers. I have been taking mood stabilizers since my diagnosis, but it took two years to get the combination right. 

I now take two different mood stabilizers and am happy to say that I am euthymic. Although I experience few side effects from mood stabilizers, taking these medications still impacts some areas of my life.

In a previous blog, 6 Things I Didn’t Realize About Taking Antipsychotics, I wrote about how antipsychotic medications have affected my life. But antipsychotics aren’t the only medications I take for bipolar disorder — I also take mood stabilizers.

It’s worth noting that while mood stabilizer is a commonly used term among clinicians, it’s not an official classification of medication. For bipolar disorder, this category typically includes anticonvulsants and lithium.

1. Tremors

In the beginning, the tremors caused by my mood stabilizer really bothered me. I was on such a high dose of one particular medication that I had to choose between managing my maniaor dealing with wild tremors. It was frustrating, but at the time, the higher dose was necessary to keep my symptoms in check.

I remember being a student nurse on my mental health placement and meeting a young man my age who was on the same mood stabilizer. His tremors were so severe that they made daily tasks — eating, brushing his teeth, writing, brushing his hair, and even getting dressed — incredibly difficult. It took him so much effort just to do things most of us take for granted.

I had no idea then that, just a few years later, I would be struggling with the same challenges — while also trying to write a thesis and work as a nurse in the emergency department. The tremors exhausted me, and I was embarrassed by them. What was hardest was that I couldn’t play the piano or cello, something I truly love. On top of that, the constant tremors felt like a visible reminder that I had bipolar disorder.

Every time my dose was lowered, I would become elevated. During a particularly severe manic episode, I was prescribed an additional mood stabilizer. That second medication, combined with my original one, finally helped keep my mania at bay. More importantly, it allowed me to reduce the dose of my first mood stabilizer without destabilizing my mood. As a result, my tremors are now very mild.

It’s important to point out that the tremors caused by mood stabilizers are different from tardive dyskinesia, a potential side effect of antipsychotics. While both involve involuntary movements, they have different causes and feel distinct from one another.

2. Thirst

Need I say more? Mood stabilizers make you really thirsty. As I mentioned in my previous post, antipsychotics can cause a very dry mouth. Combine that with the thirst from mood stabilizers, and it’s not exactly a pleasant experience.

3. Regular Blood Tests

Some mood stabilizers can make you toxic if they’re over the therapeutic range. To measure this, routine blood tests need to be taken as the level of medication shows up in the blood. I don’t know how many blood tests I’ve had since commencing mood stabilizers, but there have been lots.

When first starting on mood stabilizers, blood tests have to be done very frequently while the dose is titrated up to a therapeutic range.

When I’ve been hospitalized for mania, I would get a blood test every morning. Once the optimal dose has been established for the individual, the blood tests become less frequent, but levels still have to be monitored. I usually get blood work done every two months, but if my dose changes, testing ramps up again. 

When that happens, my Saturday morning routine begins with a trip to the local pathology clinic and for a blood test. Fortunately, I don’t mind needles, but I can see how this could be a real challenge for someone who does.

4. Fluctuating Blood Levels

Sometimes, the levels of mood stabilizers in my blood fluctuate. I can always tell when they get too high: I struggle to concentrate, I feel weak, my tremors worsen, and I experience nausea, dizziness, and hot-and-cold flushes.

The first time this happened, I had no idea what was happening to me. I was studying in the university library and seriously considered asking a colleague to take me to the hospital. I didn’t — but looking back, I probably should have. It happened a few more times before I finally made the connection that my medication levels might be too high. Blood tests confirmed it, and my psychiatrist adjusted my dose.

Now, it doesn’t happen often, but when it does, it’s always when I’m dehydrated — which makes sense since dehydration can increase blood levels. Because of this, I have to be extra careful when exercising or on hot days. If my levels spike, it can completely wipe me out for a day or two.

5. Minimal Side Effects

Aside from toxicity — which is extremely serious and requires immediate medical attention — I’ve been surprised at how few side effects I experience from mood stabilizers, especially compared to antipsychotics.

When my tremors were at their worst, I wouldn’t have said this, and I know not everyone has the same experience. But of the three types of medication I take for bipolar, mood stabilizers are the ones I prefer. I owe my quality of life and mentally healthy mind to them.


Sally Buchanan-Hagen

Sally lives in Victoria, Australia. She was diagnosed with bipolar disorder two years ago when she was 22, however she has been dealing with extreme moods since she was 14. When she experienced her first episode of depression, she was too embarrassed to get help even though she knew that something was wrong. Throughout high school she battled depression after depression, each one getting worse. At university she continued to have depressive episodes and when she wasn’t depressed she was extremely happy, incredibly driven and unusually energetic. Everyone thought this was her normal mood, herself included and so the elevated times went unnoticed. The turning point was in her final year of university when she was referred to the university counsellor. She was diagnosed with depression but after many failed treatments she saw a psychiatrist who diagnosed her with type II bipolar disorder. However that quickly turned into a diagnosis of type I bipolar disorder after a psychotic manic episode. She is currently completing her honours degree in nursing and works as a nurse in the emergency department. She blogs for The International Bipolar Foundation and has written for several publications. She also volunteers for a mental health organization where she delivers presentations about mood disorders to high school students. Although relatively new to this world, she is passionate about mental health promotion and thoroughly enjoys writing about mental health.

Melinda

Reference:

https://www.bphope.com/blog/5-things-i-didnt-know-about-taking-mood-stabilizers/?utm_source=iContact&utm_medium=email&utm_campaign=bphope&utm_content=Best+-+Mar18+-+Stabilizers

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

Mental Health Resources In America

Mental Health Resources

NIMH.NIH.gov

ADDitude Magazine

CHADD.org

ADD.org

New Method Wellness

Addiction Rehab Treatment

Addiction Group.org

D’Amore Mental Health

Addiction Rehab Treatment.com/mental-health/depression/ 

Depression and Bipolar Support Alliance

International Bipolar Foundation

Mental Health America

MentalHealth.gov

National Institute of Mental Health

National Institute on Aging

National SuicidePreventionLifeline.org
1-800-273-TALK (8255)
Press 1, Veterans Crisis Line USA
Press 2, Se Habla Español
LifeLine Chat

CrisisTextLine.org
Text 741-741
Facebook.com/CrisisTextLine

IMAlive.org Crisis Chat

TheTrevorProject.org (LGBTQ Youth)
1-866-488-7386 (24/7/365)
TrevorChat (7 days/week from 3PM–10PM ET / noon–3PM PT)
TrevorText — text START to 678-678 (Mon–Fri, 3PM–10PM ET / noon–3PM PT)

VeteransCrisisLine.net

Brain & Behavior Research Foundation (BBRFoundation.org): Awards grants for scientific research. Keep up to date on latest research

International Bipolar Foundation (IBPF.org): Bipolar research. Care and support resources for individuals and caregivers. Erase stigma through education.

MentalHealth.gov: US government mental health resources and information.

MentalHealthAmerica.net (MHA): Address needs of those living with mental illness. Promote mental health.

National Alliance on Mental Illness (NAMI.org): Build better lives for the millions of Americans affected by mental illness.

National Institute of Mental Health (NIMH.nih.gov): Federal agency for research on mental disorders.

NeedyMeds.org1-800-503-6897. Educates and empowers those seeking affordable healthcare.

Substance Abuse and Mental Health Services Administration (SAMHSA.gov): Reduce the impact of substance abuse and mental illness on America’s communities.

To see the complete list of resources click here.

Melinda

Chronic Illness · Health and Wellbeing · Infectious Diease · Lyme Disease · Medical · Men & Womens Health · Mental Health · Tick Borne Illnesses

When Lyme patients must fight to be believed by doctors

By Nancy Dougherty

llness invalidation by medical professionals—sometimes called “gaslighting”—is an underappreciated and understudied problem in Lyme disease.

Many Lyme disease patients complain not only of fighting to recover their health but also of fighting to be believed by health care practitioners.

Expecting to receive understanding and proficient care from medical professionals, many instead experience having their persistent debilitating symptoms dismissed, minimized, disbelieved and/or psychologized.

How common is the occurrence of medical gaslighting in Lyme disease? Is illness invalidation by medical professionals related to disease severity? Are there specific constituencies who are being affected more than others?

These are some of the questions that a team of researchers led by Alison Rebman, MPH, Assistant Professor in Medicine and Director for Clinical and Epidemiological Research at the Johns Hopkins Lyme Disease Research Center at Johns Hopkins Medicine, set out to identify and quantify in a cohort of well-characterized Lyme disease patients.

Invalidating encounters

The Johns Hopkins study, published in August 2024 in Scientific Reports, finds that invalidating encounters with medical professionals are common for post-treatment Lyme disease (PTLD) patients, particularly women and younger patients, and also are linked to higher illness severity.

Lyme disease is the most common tick and vector-borne disease in the US with about 500,000 new cases per year. Lyme infections are expanding geographically, and acute and chronic cases are on the rise in the US and Eurasia. Lyme infection-associated chronic illness affects around 2 million Americans and can be difficult to properly diagnose and effectively treat.

A Lyme infection can affect multiple body systems including musculoskeletal, neurologic, and cardiovascular. Patients with early diagnosis and appropriate treatment usually get better. However, about 10-20% of patients even when treated promptly with standard of care antibiotics do not return to health and are functionally impaired by persistent musculoskeletal pain, crushing fatigue, and cognitive dysfunction, known in the research setting as post-treatment Lyme disease (PTLD).

Patients frequently refer to this as “chronic Lyme.” Misdiagnosis and delayed treatments further increase the risk for PTLD as well as for more broadly defined community-based Lyme infection-associated chronic illness or “chronic Lyme.”

Women and younger patients

In the Johns Hopkins study, 49% of the PTLD patients reported a lack of understanding and 29% experienced discounting from medical professionals. Additionally, women and younger patients were at higher risk for experiencing more invalidation than men or older age patients.

The study found, “Before their initial diagnosis of Lyme disease, approximately half (51.3%) had first been told that their symptoms represented another illness or condition. This high rate is consistent with the hypothesis that diagnosis and treatment delays, and possibly exposure to inappropriate treatment, may be risk factors for PTLD.”

Women more often received alternative diagnoses (such as another contested illness like fibromyalgia or ME/CFS and/or a psychological illness) which in turn correlated with more discounting and lack of understanding. PTLD patients who reported the highest levels of illness invalidation were discovered to have greater symptom severity, lower quality of life, and less trust in physicians.

The pervasiveness of Lyme disease illness invalidation and the consequential negative effects on illness burden and health outcomes are not broadly known by medical professionals.

Improved physician education is needed to help engender more patient-centered paradigms that incorporate the patient illness experience and better recognize how that experience may impact the healing process.

National Academies look at IACI

The National Academies of Sciences, Engineering and Medicine (NASEM) has helped validate infection- associated chronic illnesses as being significant public health problems that need greater national attention, a coordinated strategy, and considerably more federal resources.

NASEM held its first national workshop on infection-associated chronic illnesses (IACI) in June 2023 to explore overlapping symptoms and biologic pathways for IACIs including Lyme disease, long COVID, ME/CFS, MS, and others.

In July 2024, a follow-up NASEM meeting focused specifically on Lyme infection-associated chronic Illness. Both forums discussed the importance of listening to and incorporating patients’ illness experience perspectives into improving diagnostic and treatment approaches. For example, patient-driven data such as MyLymeData can be leveraged to improve research and clinical care. It is vital to listen to patients especially when diagnostics are problematic, treatments are inadequate, and the science is contested or evolving.

Building upon insights and collaborative momentum from the NASEM IACI meetings, a coalition of advocates (patient, scientific and medical) are now calling for the creation of a new National Institutes of Health (NIH) office to help strengthen and coordinate research across infection-associated chronic conditions and illnesses including Lyme infection-associated chronic illness, Long COVID, ME/CFS, PANS/PANDAS, POTS/dysautonomia and others.

Listening to patients will be key to advancing solutions, reducing invalidating patient-practitioner encounters, and improving health outcomes.

Nancy Dougherty is an education and communications consultant for the Johns Hopkins Lyme Disease Research Center. Other research investigations at the Center include Pilot Treatment Trials and the SLICE Studies.

Melinda

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

13 Examples of Narcotic Drugs and Medications

Although many narcotic drugs and medications have similar effects or characteristics, each substance is unique. Here are some common examples.

From codeine to heroin, there are many narcotic substances. Some have medical uses and are available by prescription, while others do not. 

The term “narcotic” originally referred to any substance that relieved pain and dulled the senses. Some people use the term to refer to all drugs — particularly illegal drugs — but it technically refers to opioids only. 

Today, “opioid” is the preferred term, in part due to the connotations the term narcotic has.

Common opioid and opiate prescription medications

Opiates are naturally occurring compounds. Opioids include naturally occurring compounds as well as semi-synthetic and synthetic compounds. Opiates are a subcategory of opioids.

Clinicians often prescribe opioid and opiate medications:

Opioid and opiate medications can cause many side effects, including:

The higher the dose, the more potent the medication. 

Some of the most common opioid and opiate medications include: 

  • Codeine: One of the most commonly used drugs worldwide, codeine is used to treat chronic pain. Doctors often prescribe it to people living with cancer and people with back painfibromyalgiaosteoarthritis, and headache
  • Oxycodone: This medication may be used for acute or chronic pain
  • Hydrocodone: This semi-synthetic opioid is typically used to treat severe pain and, in some cases, coughs. 
  • Oxymorphone: A highly potent opioid, oxymorphone is used to help manage severe pain. 
  • Morphine: This medication is used to manage pain in people with moderate or severe acute or chronic pain, particularly in cancer treatment and palliative care.
  • Fentanyl: A synthetic opioid, fentanyl is approximately 100 times more potent than morphine and 50 times more potent than heroin.
  • Hydromorphone: This medication is used to help manage moderate to severe acute pain and severe chronic pain. It’s very potent and has a high potential for misuse, so it’s usually only prescribed when other treatments have been unsuccessful.
  • Tramadol: This medication is used to treat moderate to severe pain, but it has a high potential for misuse. Doctors usually only prescribe it to manage pain when other treatments have been unsuccessful.
  • Methadone: A synthetic opioid, methadone is often used to treat substance use disorders.

What to do if your clinician prescribes a controlled substance

Your doctor or other healthcare professional may recommend a controlled substance to help treat an underlying health condition, like anxiety or insomnia. 

They’ll work with you to determine the appropriate dose for your needs and advise you on any side effects or risks associated with use. 

Different regions have different laws around prescription medication and other controlled substances. Familiarize yourself with the laws in your area to ensure you’re properly storing your medication.

Other common opioid and opiate substances

Some opioid and opiate substances aren’t prescribed by clinicians. They’re typically used for their pleasurable effects and have a high potential for dependence and misuse.

Common examples include:

  • Opium: This naturally occurring substance is derived from the opium poppy. It creates many different opioids, including heroin, codeine, and morphine. It’s a Schedule II controlled substance in the United States.
  • Heroin: Made from morphine, heroin often takes the form of white or brown powder or a sticky black substance. It’s a Schedule I controlled substance in the United States.
  • Lean: This is a liquid mixture of cough syrup containing codeine and soda. It’s also known as “purple drank” or “sizzurp.”
  • Carfentanil: Veterinarians use this medication to tranquilize large animals, like elephants and rhinoceroses. It’s a Schedule II controlled substance in the United States.

Common opioid and opiate prescription medications

Opiates are naturally occurring compounds. Opioids include naturally occurring compounds as well as semi-synthetic and synthetic compounds. Opiates are a subcategory of opioids.

Clinicians often prescribe opioid and opiate medications:

Opioid and opiate medications can cause many side effects, including:

The higher the dose, the more potent the medication. 

Some of the most common opioid and opiate medications include: 

  • Codeine: One of the most commonly used drugs worldwide, codeine is used to treat chronic pain. Doctors often prescribe it to people living with cancer and people with back painfibromyalgiaosteoarthritis, and headache
  • Oxycodone: This medication may be used for acute or chronic pain
  • Hydrocodone: This semi-synthetic opioid is typically used to treat severe pain and, in some cases, coughs. 
  • Oxymorphone: A highly potent opioid, oxymorphone is used to help manage severe pain. 
  • Morphine: This medication is used to manage pain in people with moderate or severe acute or chronic pain, particularly in cancer treatment and palliative care.
  • Fentanyl: A synthetic opioid, fentanyl is approximately 100 times more potent than morphine and 50 times more potent than heroin.
  • Hydromorphone: This medication is used to help manage moderate to severe acute pain and severe chronic pain. It’s very potent and has a high potential for misuse, so it’s usually only prescribed when other treatments have been unsuccessful.
  • Tramadol: This medication is used to treat moderate to severe pain, but it has a high potential for misuse. Doctors usually only prescribe it to manage pain when other treatments have been unsuccessful.
  • Methadone: A synthetic opioid, methadone is often used to treat substance use disorders.

What to do if your clinician prescribes a controlled substance

Your doctor or other healthcare professional may recommend a controlled substance to help treat an underlying health condition, like anxiety or insomnia. 

They’ll work with you to determine the appropriate dose for your needs and advise you on any side effects or risks associated with use. 

Different regions have different laws around prescription medication and other controlled substances. Familiarize yourself with the laws in your area to ensure you’re properly storing your medication.

Other common opioid and opiate substances

Some opioid and opiate substances aren’t prescribed by clinicians. They’re typically used for their pleasurable effects and have a high potential for dependence and misuse.

Common examples include:

  • Opium: This naturally occurring substance is derived from the opium poppy. It creates many different opioids, including heroin, codeine, and morphine. It’s a Schedule II controlled substance in the United States.
  • Heroin: Made from morphine, heroin often takes the form of white or brown powder or a sticky black substance. It’s a Schedule I controlled substance in the United States.
  • Lean: This is a liquid mixture of cough syrup containing codeine and soda. It’s also known as “purple drank” or “sizzurp.”
  • Carfentanil: Veterinarians use this medication to tranquilize large animals, like elephants and rhinoceroses. It’s a Schedule II controlled substance in the United States.

Understanding the potential for tolerance, dependence, and addiction

With substances like opioids, there’s always the potential for tolerance, dependence, and addiction. Although these terms are often used interchangeably, they’re not the same.

When you develop a tolerance to a substance, it becomes less effective. In time, you’ll need a higher dose to get the same effects. 

When you develop a dependence, your body begins to rely on the substance to function. It’s not related to the dosage needed to feel the substance’s effects. 

Caffeine, for example, can cause physical dependence. Some people develop a headache, have difficulty concentrating, or experience fatigue if they go more than a day or so without coffee or other sources of caffeine.

Addiction, in contrast, is a chronic dysfunction of the brain system involving memory, motivation, and reward. When it’s related to drugs, it’s sometimes referred to as a substance use disorder. It can be managed with treatment.

You can develop an addiction to a wide range of things, from over-the-counter substances — including caffeine, nicotine, and alcohol — to controlled substances.

Different substances have different thresholds for tolerance, dependence, and addiction. 

Heroin, for example, has a high potential for addiction. People who use the substance often develop a tolerance, requiring a higher dose or more frequent use to produce the same effect.

Harm reduction and safer substance use

Harm reduction refers to various strategies implemented to reduce the negative consequences associated with drug use. Safer substance use refers to using substances in a way that minimizes harm.

This might include not using a substance while alone or having a trusted friend or loved one check in on you. 

Understanding the effects of different substances, using only one substance at a time, and staying hydrated can also reduce your risk of harm.

Where to learn more or find support

If you’d like to learn more, many organizations can help. And likewise, if you’re looking for support for yourself or somebody else, there are places you can go. 

The Substance Abuse and Mental Health Services Administration (SAMHSA) offers free resources and treatment referrals. You can call the 24/7 helpline at 800-662-HELP (4357) to learn more.

The National Institute on Drug Abuse provides information and research on substances and substance use, including opioids.

The National Institute on Drug Abuse for TeenagersTrusted Source provides information and research for teenagers and young adults about substance use disorders.

The Centers for Disease Control and Prevention (CDC)Trusted Source offers information and support around opioid use. 

Narcotics Anonymous (NA) offers support and meetings for people who experience substance misuse.


Adam England lives in the United Kingdom, and his work has appeared in a number of national and international publications. When he’s not working, he’s probably listening to live music.

Melinda

Reference:

Chronic Illness · Health and Wellbeing · Infectious Diease · Lyme Disease · Medical · Men & Womens Health · Tick Borne Illnesses

Battling a devious bug for 40 years and finally finding hope

By Lowell Miller

I became a host for Borrelia burgdorferi (the microbe at the root of Lyme disease), at a time when no one knew what it was. This was over 40 years ago, in 1982, only a few years after Lyme disease was discovered.

It would be decades before the telltale symptoms of unseasonal fevers, bull’s-eye rashes, faux-arthritis, and inexplicable neurological symptoms would become more known to people and doctors living in Lyme-endemic areas.

So, I was initially untreated, giving the Lyme bacteria decades to slowly and quietly populate my body, generating few symptoms or warnings along the way.

A devious bug that evades the immune system

As we now know, Borrelia burgdorferi is a devious bug with unique abilities to evade the immune system and keep itself alive. I was healthy, athletic, and active in the world, apparently achieving a kind of multi-year balance, or truce, between the slowly and inexorably growing bacteria and my body’s natural ability to ward it off.

Meantime, Lyme silently and slowly took over, embedding itself—undetected—in my brain.

It was held at bay for most of the first two decades, but that couldn’t go on indefinitely. After a period of intense business stress, I was hit with overt and acute symptoms, as if a storm had blown into my body. Apparently, the microbes had selected my central nervous system as a cozy home, rather than the joint soft tissues that affect so many patients.

Over the next few years, I wrestled with peripheral neuropathy (sirens of pain in my feet), skin and scalp inflammation (what’s going on inside blooms on the surface), Bell’s palsy (complete with an eye patch to hide the purulent discharge), chills and buzzing throughout the body, brain fog, brain dysfunction, deep fatigue, “air hunger,” dizziness and an incipient loss of balance.

This finally crescendoed into a “cryptogenic” stroke [of unknown origin], complete with a week in hospital. It was apparently caused by a weakened small blood vessel that had been undermined by Lyme.

Ok, yes, that’s a typical litany of symptoms for post-treatment (or no-treatment) Lyme disease. As my case rolled out over a second 20 years following the first 20 years of near-dormancy, I became an inadvertent observer and participant in what one might think of as “Lymeworld.”

As a somewhat over-educated guy committed to the world of rationality and science, I began a quest for health in the allopathic or mainstream medicine side of Lymeworld.

Many docs “don’t believe” in Lyme

But as anyone familiar with Lyme knows, the involvement of conventional medical science with Lyme is a heartbreaker. Even today, many doctors don’t “believe” in Lyme (as if it were a mystic religion rather than biological fauna). They wouldn’t know even a fresh case if it bit them on the butt and left a bull’s-eye!

My first internist in my Lyme-endemic geographical area literally fired me as a patient when I tried to convince him to consider Lyme as a possible cause of my painful burning feet.

I went from doctor to doctor, specialist to specialist. I even went to one of the drafters of the Infectious Disease Society of America’s guidelines for Lyme treatment. In a single visit, he dismissed my case as no longer active, though many symptoms were still to come.

I stuck with allopathic doctors, in my heart of hearts believing that after 50 years they would soon have a cure for this bacterial disease, as medicine had cured so many other bacterial conditions.

After getting a high positive count on the Western blot test for Borrelia in my cerebral spinal fluid—not a good thing—I got hooked up with a 30-day intravenous infusion of ceftriaxone. When that finally provided only the most minimal symptom relief, the infectious disease specialist told me: “There’s nothing more we can do for you.”

Those are hard words to hear when you think you’re dying.

But I refused to accept that there was nothing more to do. I became my own advocate and researcher, a path everyone with long-term Lyme must follow—because there is so little help from others.

I’d lost a lot of mental functioning but mercifully could still do online medical research. Being retired, I had the time to turn over every stone.

Devising my own protocol

Eventually, with myself as test subject, I created a multi-pronged protocol based on in vitro studies that indeed began to work, one that grew from a foundation of credible laboratory science (if not quite yet proven in the clinic).

Many of the strange-sounding botanicals I used are in fact the basis of pharmaceuticals, and not toxic or dangerous. Their action is slower because they work to support the body’s own immunity, and they don’t have noticeable side effects. But their efficacy is clear.

I have put my experience into a book called Lyme with a Twist: A Path to Triumph Over Chronic Infection. It recounts my story and what I did to get better.  (My healing is the “twist.”)

I hope it can help people afflicted with Lyme and their loved ones escape the loneliness that Lyme can induce. It takes persistence, discipline, time, and tenacity to recover from a Borrelia infection, and it’s worth the effort. My life has taken a dramatic turn for the better, finally the days are bright again. A message for Lyme sufferers: you can overcome this, you really can.

Lowell Miller is a writer, businessman, and artist living in the Hudson Valley, New York. Click here to learn more about Lyme with a Twist: A Path to Triumph Over Chronic Infection.

Melinda

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

What’s Up With Me

I have been battling depression for several months. I have Treatment Resistant Biplor Disorder. What that means is many medications don’t work on me, or if they do, they stop working at some point. I have been dealing with this up and down since 1992.

One of the medications I started in the Spring, which was working wonders, stopped working. I’ve been working closely with my Psychiatrist to change doses, but nothing is working. He increased the dose today on one of my medications, and I’m always positive it will work. My fingers are crossed.

I’m sure you’ve noticed I have been posting less; I can’t wait to get back to myself.

If your medications stop working, don’t abandon your medications, call your doctor and get the attitude that the next drug will work. You can’t do it alone.

Melinda

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

March Awareness Months

March is not only the beginning of Spring but it is chocked full of awareness days, weeks and months. Due to the size of the list, I only included the monthly awareness days. At the bottom of the post there is a link where you can see the full list.

Women’s History Month

National Reading Month

Disability Awareness Month

Kidney Cancer Awareness Month

Red Cross Awareness Month

Self-Injury Awareness Month

Brain injury Awareness Month

Multiple Sclerosis Awareness Month

Colorectal Cancer Awareness Month

Melinda

Reference:

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

 

 

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

9 Ways Stress Can Make You Sick

Stress has been linked to cardiovascular disease, depression, and even the common cold.

Stress is all around us. And while some stressors certainly can feel overwhelming, it’s important to remember that not all stress we face is bad.

The National Institutes of Health says stress is “how the body and brain respond to an external cause that may be a one-time or short-term occurrence or happen repeatedly over a long time.” 

Our body’s response to stressors can sometimes be helpful — giving us a burst of energy to get away from danger or perform well under pressure, explains Michelle Dossett, MD, PhD, MPH, an internist and an integrative medicine specialist at the University of California in Davis.

Anxiety about a doctor’s visit or a performance review at work, for example, or even something scary, like a car heading right at you, are all examples of short-term stressors. 

Long-term stressors have a different effect. “Stress that lasts years or a long time is usually the worst kind of stress,” says Bert Uchino, PhD, a professor of psychology at the University of Utah in Salt Lake City who studies stress in aging populations.

If you’re in a job you hate or you’re a caregiver for a family member with Alzheimer’s disease, for instance, says Dr. Uchino, you may suffer from high levels of chronic (or long-term) stress. That’s where your body “never receives a clear signal to return to normal.”

It’s this type of chronic stress that causes changes in the body that can do damage and contribute to disease in some cases, says Uchino. Blood tests can reveal inflammation, changes in blood pressure, and elevated levels of the stress hormone cortisol, which can all be signs of chronic stress.

9 Illnesses That Stress May Cause or Make Worse

Chronic stress certainly doesn’t help or promote healing in any disease or health problem. Here are some common illnesses that can be caused and made worse by stress.

1. Depression and Other Mental Health Conditions

The exact reason why some people experience depression and anxiety as clinical mood disorders and others do not is still unknown, according to the Centers for Disease Control and Prevention (CDC). Many factors are potentially in play, including genetic, environmental, and psychological conditions, as well as major stressful or traumatic experiences.

Research shows, however, that chronic stress left unmanaged is linked to serious mental disorders like anxiety and depression. Persistent or prolonged stress leads the body to produce certain hormones and chemicals that perpetuate an ongoing state of stress that can have adverse effects on key organs.
Around 20 to 25 percent of persons who experience major stressful events will go on to develop depression, according to a commentary and review of research published in JAMA.

2. Insomnia

An informal APA survey from 2013 on stress and sleep found links in both directions. Forty-three percent of the nearly 2,000 adults surveyed reported that stress had caused them to lie awake at night at least one time in the past month. When they didn’t sleep well, 21 percent reported feeling more stressed. Among adults with higher self-reported stress levels (8 or higher on a 10-point scale), 45 percent said they felt more stressed when they didn’t get enough sleep. Finally, adults with lower self-reported stress levels claimed they slept more hours per night on average than adults with higher self-reported stress levels, to the tune of almost an hour less sleep (6.2 versus 7.1 hours a night).

3. Cardiovascular Disease

Chronic stress has long been connected to worsened heart health outcomes. While there’s limited conclusive evidence to say that stress alone can trigger heart disease, there are quite a few ways stress contributes to it, according to a JAMA review. Part of the stress response is a faster heart rate and blood vessel constriction (or vasodilation for some skeletal muscles to help the body move in a fight or flee response), thanks to the stress hormones adrenaline, noradrenaline, and cortisol, according to research. If the body remains in this state for a long time, as in chronic stress, the heart and cardiovascular system may be damaged, according to other research.

Another means by which stress can contribute to heart disease: You might cope with your stress by eating or drinking too much, which in turn can contribute to cardiovascular disease, also according to APA.“Negative emotions and stress can contribute to a heart attack,” Dr. Dossett says.  One meta-analysis, for example, found a 50 percent increased risk of cardiovascular disease associated with high levels of work stress.

4. Common Cold

Stress can also weaken your immune function, which can make you more susceptible to infectious diseases like colds, Uchino explains. Researchers conducted an experiment in which they exposed a group of 420 volunteers to the common cold virus and then quarantined them to see if they got sick. The data revealed that participants who suffered from greater overall stress at the start of the study (measured via surveys on stressful life events, perceived stress, and mood) were more likely to become infected with a virus after exposure.

5. HIV and AIDS

Stress does not cause HIV (the virus that causes AIDS, which is sexually transmitted or passed through blood, which can happen when needles are shared). But there is some evidence that stress can worsen severity of the disease. A study of 177 HIV-positive patients found that the stress hormone cortisol (associated with chronic stress) was linked to a higher HIV viral load over four years and accelerated disease progression in people living with HIV. For the study, cortisol levels were measured via urine samples every six months.

Another review, published in 2016, concluded that while the link between stress and clinical outcomes is unclear, higher stress was linked to lower disease-fighting white blood cell counts, higher viral load, and disease worsening. Studies also linked stress with worse treatment adherence, per the review.

6. Gastrointestinal Disease

“Stress can affect gastrointestinal motility,” says Dossett, which is how food moves through your digestive system, increasing your chances of irritable bowel syndrome, inflammatory bowel conditions, gastroesophageal reflux, constipation, diarrhea, and discomfort. “All those things can be impacted by stress,” she says. Research supports this as well.

7. Chronic Pain

Some chronic pain conditions like migraine and lower back pain can be caused, triggered, or worsened when body muscles tense up. A lot of chronic low back pain is related to stress, says Dossett. “Very often it’s muscle tension and tightness that is pulling or creating strain, and then contributing to this sensation of pain.”

study published in 2021 confirmed a strong relationship between the degree of stress and chronic lower back pain. The researchers concluded that clinicians who treated patients with chronic low back pain should also evaluate a patient’s stress levels.

“Pain is inherently stressful. When the pain does not appear to be remitting or getting better, the concern regarding the pain can turn into fear, anxiety, and hopelessness,” says Joel Frank, PsyD, a psychologist in private practice in Sherman Oaks, California. 

review published in 2017 examined the overlap between chronic stress and chronic pain, finding that both conditions triggered similar responses in the brain, particularly in the hippocampus and amygdala. The researchers also noted, however, that because of the wide variety of ways humans experience chronic pain and stress, these two conditions do not always overlap.

8. Cancer

What causes cancer is a particularly challenging question to answer, says Uchino. Because most patients are diagnosed only after years of cancer cell growth, it’s difficult if not impossible to pinpoint a specific cause. And it’s likely that several factors (someone’s genes, plus an environmental trigger like smoking, air pollution, or stress, for example) contribute.

But there is some evidence in human studies that stress plays a role in the onset of cancer, Uchino says. (It’s also worth noting that some studies have found no link.)

One possible reason why stress might contribute to some cancers: Stress can activate your brain and body’s inflammatory response, as well as stimulating your adrenal glands to release stress hormones called glucocorticoids, among many other downstream effects. Some research suggests that too much of this type of inflammation from chronic stress is the connection with cancer (as well as some autoimmune diseases — see below), Dossett explains.

9. Autoimmune Conditions

“Many inflammatory conditions are exacerbated by stress, and that includes autoimmune conditions like multiple sclerosis, rheumatoid arthritislupuspsoriatic arthritis, and psoriasis,” says Dossett. A Swedish population-wide study published in the June 2018 issue of JAMA found that patients with a stress disorder were more likely to develop an autoimmune disorder (9 per 1,000 patients per year compared with 6 per 1,000 among those without stress disorders). Another extensive review on the role of stress in autoimmunity emphasized that this is a relationship that medicine often overlooks.

Summary

The good news is there are many effective ways to manage stress, says Dossett, including yoga and mindfulness. These types of interventions don’t undo or change whatever situation is causing stress (financial woes, a family argument, or a busy schedule), but they can retrain the body’s central nervous system’s response and help dial that response down if it’s been triggered.

But some conditions, such as cardiovascular disease, develop years before they are diagnosed, so more research into interventions is desperately needed, says Uchino.

All things considered, if you want help with your chronic stress or other psychological issues, it’s best to ask your doctor or a trained mental health provider to evaluate and support you based on your needs.

Melinda

Reference:

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

Looking For Answers

feeling down

looking for answers

nowhere to go

no joy or fun

waiting for things to change

grey skies every day

know there is hope

the sun will shine

I am blessed

Melinda

 

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

How I Navigate Professional Life While Living with a Chronic Illness

When I was diagnosed with rheumatoid arthritis (RA), I was terrified that my career was over. These tips helped me adapt my work life so that I could excel. 

It started with joint pain and limited use of my left thumb. 

Then came the debilitating fatigue that was so profound I couldn’t finish my workday. After numerous tests, office visits, and misdiagnoses, I was diagnosed with RA

RA is a chronic, systemic form of arthritis that attacks the small joints in the body. This can lead to eventual joint deformity and immobility. I found myself not only grappling with what this new diagnosis meant but also fearful for my job. 

I had worked so hard to be where I was in my career. I had dedicated my entire life to working in healthcare, and I was terrified I wouldn’t be able to continue.

The challenges of working with chronic illness

Workers with chronic illness face unpredictable days and uncertain futures. They may worry about their own health, how their condition will progress, and what this might mean for the future of their employment. 

The protections afforded chronically ill workers in the United States are vague. 

To protect their health and their jobs, workers must navigate employers’ policies, which may include short-term and long-term disability plans and a patchwork of federal laws and regulations. 

2009 report by the Center for Economics and Policy Research found that among 22 well-resourced nations, the United States was the only one that did not guarantee workers paid time off for illness.

There are two main laws that provide some protection for those with chronic illness in the United States.

The Family and Medical Leave Act 

The Family and Medical Leave Act allows employees to take up to 12 weeks off each year for medical or family emergencies, but pay is not guaranteed. This law provides job security if someone needs to take time off due to illness.

The Americans With Disabilities Act 

The Americans With Disabilities Act requires employers to make reasonable adjustments for disabled workers, often in the form of additional time off.

Strategies for working while navigating chronic illness

If you are dealing with a chronic illness, here are some strategies to help you maintain and even excel at your job.

Decide who you’re going to share your diagnosis with

Sometimes an empathetic co-worker can help with productivity. Other times, no one needs to know. It’s your business. Have questions about the Americans with Disabilities Act? Check out the Job Accommodations Network. Is it against the law to discriminate against a disability. For further information on filing a complaint, check out the Equal Employment Opportunity Commission.

Make a schedule — and stick to it

If you need 90 minutes to get ready before work, 3 hours to get ready for bed, or a midday nap, plan for it. Planning appropriately, and generously, can help you optimize your time while at work. 

Optimize your body’s ability to function by listening to it.

Take breaks

Even people without brain fog or medication side effects need to take breaks every 1 to 2 hours, especially when working on a big project or working long hours.

Reject the guilt

Lose the guilt when you call in sick because you are really sick. All too often, we tie too much emotion to calling in sick. If you’re really sick, you shouldn’t be at the workplace anyway. You are human!

Find the right fit 

When thinking about having a career when you live with a chronic condition, there are certain factors to consider more seriously. Start by taking an inventory of what you need out of a working environment. Ask yourself these questions about the role or career you are contemplating:

  • How many hours are required and expected?
  • Are hours set or is the schedule flexible?
  • Is there sitting, standing, or lifting involved?
  • Are you working on a computer?
  • Is the workspace ergonomic and comfortable for your specific needs?
  • Is the space climate-controlled?
  • Is there travel involved?
  • Is it possible to take time for medical appointments?
  • Are there medical benefits? Is your current care team on this plan?

Schedule for the right shifts

Sometimes it’s not a matter of what you’re doing but when you’re doing it. If you’re not a morning person, don’t work at a coffee shop. 

Are your best hours in the afternoon and early evening? Maybe a receptionist role at a dance school is a good fit. Try to find a career where the hours fit your natural sleep schedule or the times of day when your symptoms tend to be the most manageable.

Look into self-employment options

Can you break off and start your own company? Working for yourself has its benefits. Maybe there are freelance options at companies you are considering. 

Use adaptive devices and furniture 

Upgrade your office chair, splurge on the ergonomic mouse, and adjust your monitors or other equipment to minimize strain on your joints. Here are some great tips from the Arthritis Foundation about creating an ergonomic office space.

Manage your pain as best as you can 

Bring your medications, compression gloves, braces, ice packs, heating pads, ace wraps, and anything else you may need with you to the workplace. 

If it helps you to be more productive, have it available to you throughout the day.

Check with an advocacy organization 

Advocacy organizations may offer resources that are specific to your condition. They may offer support, resources, or advocacy in your area, which may be helpful. I’d recommend starting with Chronically Capable.

Know and respect your limits

If you can’t work anymore, you can apply for Social Security disability insurance. The process is lengthy, and the payments are modest, but you automatically qualify for Medicare health insurance coverage once approved.

The bottom line

If it doesn’t work, change it. 

If you know the job you’re in now is not a good fit, it’s time for something new. Change is scary, but staying the same can be terrifying.

There are many ways to have a fulfilling career with a chronic illness. If you are open-minded and ask yourself the right questions, you can find something you love. If you love what you do, it will never feel like work.

Melinda

Reference:

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

Mini Me Health Update

What made me think having two hand surgeries in a month was a good idea? I knew it wouldn’t be a walk in the park but it was much worse. The stitches are healed but the swelling next to them has not gone down. The wrist still hurts when moved in any direction and though the inside of my hands are no longer bruised they still hurt and are swollen. I have no idea what the healing time is so I’m taking it day by day. Opening up a bottle is painful so he has to jump in to help with those tasks. I even have a few number fingers.

One frustration is that David’s company sent a large basket of 6 plants, but I can’t plant them yet. I just knew I would be able to do something by now. Of course, this affects my writing because once they start hurting, I have to stop before it turns into a bad situation. I love the plants and can’t wait to plant them.

Why did I do it? It’s one you may understand. We had met our Medical Insurance deductable for the year, and if I pushed the second hand to 12/30/24, my surgery would be covered at 100%. If it were a worse surgery, I would have waited, but this made sense at the time. Sometimes, we have to make decisions for our families’ finances.

I hope you don’t find yourself in that situation if so think hard and decide which is best for your health and your family.

Take good care.

 

Melinda

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

Tips for Caring for Your Spouse with Alzheimer’s and Yourself

Medically reviewed by Susan W. Lee, DO — Written by Eleesha Lockett, MS on September 18, 2023

It can be overwhelming when a spouse receives an Alzheimer’s diagnosis, but there are many networks in place to make sure that both of you have the support you need.

Alzheimer’s disease is a progressive form of dementia ― an umbrella term for a handful of conditions that affect someone’s thinking, memory, behavior, personality, and more. Alzheimer’s is the most common type of dementia, and it affects more than 6 million people in the United States alone, according to the Alzheimer’s Association.

An Alzheimer’s diagnosis can signify the beginning of a new chapter of life for the person with the diagnosis and those close to them. And for spouses of people living with Alzheimer’s disease, their role can often shift to caretaker, which can bring its own set of challenges.

This article discusses tips for taking care of your spouse after their Alzheimer’s diagnosis, including how to take care of yourself and when it might be time to reach out for professional support.

Tips for working with their medical team

Alzheimer’s disease can eventually make it difficult for a person to perform certain tasks on their own, so it can be helpful to build a supportive medical team early on. Here are some of the medical professionals that commonly make up a medical care team for someone with Alzheimer’s:

Whether your spouse has only one or a few of these professionals on their care team, knowing that the care team is there to help is important.

As a spouse, it can be especially helpful to maintain an open line of communication with your loved one’s medical team. One of the ways that you can do this is by scheduling or sitting in on phone calls or meetings with the care team members.

Meetings and appointments are also a great time to bring up any concerns you might have ― or any goals that you and your spouse have discussed for care. And if you have any questions about anything related to your loved one’s medical care, be sure to mention those, too.

Tips for at-home Alzheimer’s care

As Alzheimer’s disease progresses through the stages and the condition’s symptoms become more severe, your loved one may require more assistance with tasks of daily living. For many people, most of this care takes place at home.

Here are two helpful tips that can help as you care for your loved one.

Accommodate Alzheimer’s and dementia needs 

Dementia can affect your spouse’s physical movements and their ability to think or use memory. If your home and lifestyle accommodate these needs, it can make day-to-day activities less stressful for both of you. 

Those with dementia may benefit from: 

  • labels and reminders for important items, like medications, or household hazards, like cleaners
  • physical accessibility aids like ramps or easy-to-open door handles 
  • a balanced diet high in veggies and other anti-inflammatory foods
  • clothes and personal care items designed for low mobility 
  • living in a neighborhood without heavy traffic and with high walkability 
  • a regular social schedule with time to see friends and family 

Ask for support

Alzheimer’s disease can affect the lives of everyone involved, which is why support can be such an important part of care. And when you’re caring for a spouse with Alzheimer’s at home, support can come in many forms: financial, social, medical, and more.

Sometimes, this support looks like reaching out to a friend or family member for a little extra help with daily tasks like shopping and cooking. Or it might look like touching base with your spouse’s caseworker to sign up for financial assistance programs.

Either way, one of the great ways to care for yourself and your spouse is to reach out and ask for support in whatever area you might need.

Hire professional help

Someone with moderate to severe Alzheimer’s disease may find everyday tasks like dressing themselves, going to the bathroom, or even eating by themselves to be difficult. At this stage in the disease, caregiving can be ongoing.

As a caregiver to a spouse with Alzheimer’s, it can be difficult to keep up with their needs and your own ― which is where professional support comes in. Some of the most common options for caregiving support include home care aides, home healthcare aides, and respite services, to name a few.

Whether you’re looking for support for just a few hours or a longer time, it may help to take advantage of the help that’s around you. 

The right time to consider professional help

When you’re the caretaker or someone close to you, it can be difficult to imagine entrusting that care to anyone else ― especially if it takes place outside the comfort of your own home.

However, sometimes your loved one might need more care than you can feasibly offer them, especially in the late stages of their disease. And toward the end of their life, some professionals can help navigate you both through the final stages of their journey.

While people can experience dementia differently, in some cases, the condition can cause episodes of anger, verbal aggression, or sometimes physical violence. Professional healthcare workers can help to ensure everyone’s safety and dignity. 

If you feel that it might be time to explore professional caregiver or end-of-life support for your loved one, consider reaching out to their doctor to discuss the options available to you.

Tips for your mental health

Spouses and partners of people living with Alzheimer’s disease tend to experience increased stress, anxiety, and depression. In fact, one 2020 study found that people whose spouses had Alzheimer’s disease and related dementias had a 30% increase in depressive symptoms than those without spouses with these conditions.

Here are a few tips you can follow to take care of your health while caring for a spouse with Alzheimer’s:

  • Take care of yourself: It can be hard to support your emotional health if you don’t support your physical health. Getting enough sleep, eating a balanced diet, and frequently moving your body are just a few ways you can take care of your body and mind.
  • Practice reducing your stress: Full-time caretaking can be stressful, so it’s important to set aside some time for activities that can reduce your stress. Not only can this help reduce your stress and improve your health, but it’ll also allow you to take better care of your loved one.
  • Take time to enjoy hobbies: As a caregiver, you may notice that your own hobbies and activities can fall by the wayside as you focus on your spouse. But one way you can nurture yourself during this time is by reconnecting with the hobbies and activities you enjoy ― alone or with friends.
  • Connect with your support: Speaking of connecting with others, no one should have to navigate life after a diagnosis of Alzheimer’s disease alone. Whether you connect with friends, support groups, or mental health professionals, try to lean on your support system when you need it.
  • Take vacations: This could be a trip with friends or a few days solo at a bed-and-breakfast ― but everyone deserves a little time to focus on themselves and relax.

Takeaway

It’s common for Alzheimer’s caregivers to feel many emotions about their loved one’s diagnosis ― sadness, grief, frustration, and even anger. Sometimes, you can work through these feelings alone, but other times, it can be difficult to work through them without the right support.

If you feel like you could use support navigating through this difficult time, whether physical, financial, emotional, or otherwise, consider reaching out to the professionals around you who can help.

My blogging friend Mary Doyle from Midwest Mary learned firsthand about the journey of caring for a loved one with Alzheimer’s when her husband was diagnosed. She has written three books about her experience with Alzheimer’s. Mary is generous and uplifting. Please stop by her blog and say hello. 

Inspired Caregiving. Weekly Morale Boosters

 The Alzheimer’s Spouse

Navigating Alzheimer’s.12 Truths about Caring for Your Loved One

Check out all of the books Mary has written, here.

Melinda

Reference:

https://www.healthline.com/health/alzheimers/how-to-cope-with-alzheimers-spouse#takeaway

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

6 Tips for Navigating the Job Search with Chronic Illness

by Kathy Reagan Young

Fact Checked by: Jennifer Chesak, MSJ

With careful planning and thoughtful strategies, you can find fulfilling employment opportunities that accommodate your unique needs.

Searching for a job is a job in itself. Add chronic illness to that mix, and the process becomes even more complex. The unpredictable nature of chronic conditions makes it important to have a plan for dealing with what can be unique hurdles during the job search. 

I’ve been there, done that. That’s why I’m offering my practical tips and insights to help you navigate the job search successfully.

1. Set realistic goals

Before diving into the job search, it’s essential to assess your limitations, strengths, and preferences. Consider the impact of your condition on your daily life and energy levels. 

Do you tend to “fade” as the day goes on? Setting hours to reflect and embrace this truth will be helpful. Are you unable to lift, walk long distances, or hold a phone? Do your hands get tired easily? Only you can know yourself. 

Self-awareness will guide you to set realistic goals and find positions that align with your abilities. And it will set you up for success in the long run. 

“Disability is a matter of perception. If you can do just one thing well, you’re needed by someone.”

— Martina Navratilova

2. Research potential employers

Identify industries and roles that accommodate flexible schedules, remote work options, and supportive work environments. Look for companies with a strong commitment to diversity and inclusion, as they may offer more accommodations for people living with chronic illness. 

So, how do you find this information? 

Research. I like to check out companies on LinkedIn. It’s a great place to learn about a company’s culture and the people who work there. You can also learn a lot from anonymous postings of current and former employees on Glass Door.

3. Weigh the decision to disclose your condition

The decision to disclose your chronic illness is a personal one. It may depend on the nature of your condition and the specific job requirements. Legally, employers cannot discriminate against people living with disabilities. 

But let’s be honest: Discrimination is real. Doing what we can to control the narrative is a smart decision.

I used to advocate for everyone to be forthcoming — loud and proud, so to speak. “Share the real you,” I’d say. “Having to keep a secret is exhausting and stressful. Be authentically who you are.” 

Then, multiple people shared with me their stories of discrimination and ableism. So, I no longer suggest that. 

Now, I recommend securing the job first and disclosing your condition strategically if you decide to do so. Share only the most job-relevant information and nothing more. Focus on your skills and qualifications first, then discuss any necessary accommodations that will allow you to perform at your highest level. 

And document, document, document. If you feel you’re being discriminated against at any point in the hiring stage or beyond, you’ll need documentation to substantiate your claims.

4. Utilize job search platforms and networks

Explore online job search platforms and networks that cater to individuals with disabilities or chronic illnesses. Many websites feature job listings from companies actively seeking to hire people with diverse abilities, providing a supportive environment for job seekers with chronic illnesses. 

Leverage your personal and professional networks. Tell friends, family, and colleagues about your job search and ask for recommendations or introductions. 

Maybe you post on your favorite social network (Facebook, Instagram, etc) or email several friends and family members to inform them of your job search and ask for any advice. Networking opens doors to opportunities that may not be advertised through traditional channels. 

5. Emphasize transferable skills

Craft a compelling resume and cover letter that emphasize your transferable skills and accomplishments. Focus on experiences that showcase your ability to overcome challenges and achieve results. 

Maybe a team member at a former job of yours resigned unexpectedly in the middle of a big project with a deadline looming. Instead of panicking, you assessed the skills of other team members to see how this deficit could be filled by existing talent, and you hired temporary outside help to fill in the remaining gaps to complete the project well and on time. 

Sharing how you’ve overcome challenges in the past can help potential employers see the value you bring to the table, regardless of any limitations posed by your chronic illness.

Consider creating a skills-based resume that emphasizes your abilities and achievements rather than focusing on a chronological work history. This format allows you to showcase your skills prominently, capturing the attention of employers and demonstrating your suitability for the position. 

Just search “skills-based resume” to see formatting examples.

6. Prepare for interviews

Job interviews can be nerve-wracking, and sometimes we can face additional stressors. Take proactive steps to prepare for interviews by researching common interview questions and writing down your responses. 

Consider practicing with a friend or family member to build confidence and refine your answers.

Develop a strategy for addressing potential gaps in your employment history due to health-related reasons, focusing on how you’ve maintained or improved your skills during such periods. For example: 

During (specific timeframe), I was dealing with health challenges that taught me valuable lessons in resilience and adaptability. I remained active in professional networking groups, participated in online discussions, and did self-directed learning. This not only kept me informed about industry developments but also allowed me to exchange ideas with professionals in the field.

Navigating a job search with a chronic illness can be challenging, but with careful planning and thoughtful strategies, you can find fulfilling opportunities that accommodate your unique needs.

Online job search platforms

Online resources

  • Disability:IN: A global organization that promotes the inclusion of people with disabilities in the workplace. Their website offers resources, webinars, and job listings from inclusive employers.
  • Work Without Limits: A resource center that provides tools and information to support individuals with disabilities in finding employment, including job fairs, networking events, and career development resources.
  • My Plus: Focuses on supporting students and professionals with disabilities, offering a range of resources, including a job board, webinars, and advice for navigating the job market.
  • DisabledPerson: An inclusive job board connecting individuals with disabilities to employers actively seeking to diversify their workforce.
  • CareerOneStop: Workers with disabilities: A comprehensive resource by the U.S. Department of Labor providing information on job accommodations, career planning, and employment services for individuals with disabilities.
  • Understood: A platform offering resources and support for individuals with learning and attention issues. Their employment section provides guidance on job searching and workplace accommodations.

Book recommendations

I have Bipolar Disorder and made the decision to not tell my employer exactly what health issue I had and I did not discuss it until my health forced me to take time off. If you have a physical limitation that creates a different situation and one where you will need to tell them upfront. Be leary, and keep documentation, the reality is not all employers are ethical and respect EEOC laws. That’s the cynic in me.

Melinda

Reference:

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

Blogger Highlight-Ephemeral Encounters

Thank you for all the great feedback on the Blogger Highlight series, I’ve enjoyed meeting each blogger and sharing their blog with you. This week we highlight Ephemeral Encounters. We have not followed each other for long, but I had to follow after reading a few poems. Maggie is kind and giving; her personality shines through her words. 

Ephemeral Encounters

I am Maggie Watson, an Indie Poet and Author from Scotland.
My poetry journey began at the start of the pandemic in 2020.
At that point, I had no idea it would then become such a big part of my life.
We can all agree that those years were very difficult, and I found the "lockdowns" particularly hard.
So I began putting pen to paper, merely to get my sense of isolation and frustration down on paper.
Fast forward to December 2020 and "The Madness of Corona" was published (by a publishing house).

Her lasted book is called, Pieces of Me, A collection of poems.

I am pleased to announce that my New Collection of Poetry is now available to pre-order (Kindle Version) on Amazon

The Paperback Edition will be released on 7/10/2025.

I asked Maggie a couple of questions:

M. You started writing in 2020, how did you know it was your life’s passion?

M.  At that point I had no idea that writing would become my passion. Covid had just raised its ugly head. I felt very isolated at the time, so I began putting my thoughts down on paper. Living on my own with the uncertainty of what was going on in the outside world was horrendous, my mental health was not great at that time (I am prone to low mood). I could not have envisaged the huge part it would then become in my life, but I am so very happy that I did pick up that pen!

M.  You have been published many times, what is your favorite piece of work and why?

M.  My favourite piece is “The Mask”.
It was in my first Collection, “The Madness of Corona”, which was published by a publishing house.
The Mask really conveys what people with depression sometimes do.
We wear a mask because there are still many people who don’t get it.
People also wear masks to hide their pain (the wounds that no one sees).
 
Another favorite poem of Maggie’s is In the Shadow of My Pen, it’s a “fire in your belly ” poem, one which I hope anyone reading would draw strength from.

Child of Mine is one of my favorite poems. 

Be sure to pull up a chair and read through her archives, it will be time well spent.  

Melinda

Looking for the Light

 

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

I’m Agoraphobic

My agoraphobia started a year or two before the pandemic. It was frustrating but my therapist helped on the journey. It started with intrusive thoughts that people were chasing me in their car and planning to hurt me by driving me off the road. These thoughts lasted for a long time. These are not dreams, they came during the day.

It’s possible the trigger was set off by me driving to a doctor I had seen for 15 years and getting lost. I had left my cell phone at home, so it was very stressful because I didn’t know the area well and had problems getting back to the freeway. Is this connected? I don’t know. 

Then dreams started that were centered around my car. I couldn’t find the right key, I rented a car and when I looked for it I didn’t know how to find the car. I was carrying a huge keychain full of keys and I couldn’t find the right key and different dreams continued. The dreams came often in the beginning. The latest thought is someone is following me after going to the bank. 

I thought it might be Agoraphobia but I thought it was someone who could not leave the house. When I started reading about Agoraphobia, I was shocked by the different types. I found my symptoms listed and now have an answer.

One treatment option is EMDR Sessions. It works for many people but some doctors do not recommend it for people with Bipolar Disorder. I’ve chosen not to have the treatments. 

For now, I only drive within a 3-4-mile radius of the house, making me less independent. I don’t focus on Agoraphobia, it’s when I make plans to leave the house that the feelings kick in and dictate what I do next.

Melinda

Repost

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

Bipolar and Binge Eating: How I Broke Free

By Sasha Kildare

Medically Reviewed by Allison Young, MD

Last Updated: 5 Nov 2024

I tamed my intense cravings and calmed my binge-eating habits to help keep my diet — and my bipolar moods — in balance.

My co-worker carefully extricates her lunch from the toaster oven. The slice of leftover pizza, cheese dripping over its edges, smells divine. She observes me plopping frozen spinach, grilled chicken, and a splash of tomato sauce into a microwave-safe casserole dish and says, “You’re so good. I wish I could eat like that.”

“It’s easy to be good when you’re afraid of passing out over your keyboard from low blood sugar,” I reply to excuse my freakishly healthful lunch. I explained to her that maintaining a good diet keeps my moods in check and would go beyond the bounds of casual break-room small talk.

The steadier my blood sugar levels throughout the day, the steadier my energy, the more alert I feel, the less anxiety I experience, and the more productive I am. The more alert and productive I am, the better I keep bipolar depression at bay.

Work festivities can be a tad awkward, though. I’ve become adept at resisting temptation when someone brings in a plate of brownies, despite the bewildered urging when I refuse. “You gotta try this. It’s Aunt Bessie’s recipe.” Or, “C’mon, who doesn’t like chocolate?” I try to explain, “I love chocolate. It just doesn’t love me.”

Binge Eating and Bipolar Disorder

I used to be a binge eater, regularly losing and gaining as much as 50 pounds. After getting home from work, I could easily inhale ice cream by the pint or a sleeve of chocolate chip cookies dipped in milk — or both. The sugar was like a tranquilizer for my anxious feelings.

Several months and several dress sizes later, I would restrict my eating to lose the excess weight. I cut and cut and cut calories until I was down to diet soda, French fries, and not much else. But crash dieting crashed me into hypomania. By the time I fit into my skinny jeans, my judgment would be even skimpier.

I finally gave up the hard stuff — chocolate, desserts, anything with white flour — when I was trying to get pregnant. (Who knew that wide swings in weight can throw the reproductive hormones off kilter?) Two kids and an education in nutrition later, my weight fluctuates by a more moderate 10 pounds or so. And as long as I don’t eat sugar, I don’t crave it.

How Stress and Fatigue Cause Carbohydrate Cravings

If only it were just sugar. If I’m not careful, bagels and white bread can just as easily send me to Bingeland.

Stress and fatigue fuel our hunger for carbohydrate-heavy treats. There’s a connection between carbs and the brain’s production of serotonin, the “feel-good” hormone — although trying to piece together exactly how this works makes me remember why I flunked organic chemistry.

Here’s an easier tidbit from bio class: The body turns any carb into glucose, a.k.a. blood sugar, to use as energy. The more quickly carbs “dissolve,” the more quickly glucose gets dumped into the bloodstream. Blood sugar levels spike, and what goes up must come down — leading to lethargy and low mood.

In self-defense, I’ve become a student of the glycemic index. Originally developed to help people with diabetes keep their blood sugar in balance, the glycemic index tells you how quickly glucose levels rise after eating a particular food.

White bread, alas, ranks high on the glycemic index. As a compromise, I end my day with a slice of whole wheat bread slathered with crunchy peanut butter and a smidgeon of strawberry jam.

Finding the Right Eating Habits for Bipolar Mood Management

I live in a rush zone from 5:30 a.m. until I chase my daughter into bed at 9:30 p.m. I chow down a protein bar and travel mug of cold water while driving to the office. I write bits of stories and articles in my head while working out. The drive home doubles as a time to make business and social calls.

PB&J on whole wheat unwinds me. It quells my anxiety about everything I need to accomplish before bedtime, everything I am not going to accomplish before bedtime, and everyone I will let down by not getting to every “to do.”

Of course, it’s possible to find that relaxed, comforted feeling through journaling, writing a gratitude list, meditating, stretching, or walking around the block. When I’m tired, though, it’s much easier to use food to chase away my anxiety. And if I actually kept off that extra 10 pounds, what would I have to whine about?


Maybe that’s the real question I need to ask myself: What am I really hungry for? Understanding my needs and making small adjustments can help me balance eating habits and self-care, supporting a healthier, more stable mood over time.

UPDATED: Originally printed as “My Battle of the Binge”, Winter 2014

I had problems with binge eating when I was younger and always tied it to stress. Now I have a different perspective to mull about.

Melinda

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

January Awareness Months & Days

National Blood Donor Month

Cervical Health Awareness Month

Glaucoma Awareness Month

National Eye Care Month

National Stalking Awareness Month

Self-Love Month

Walk Your Dog Month

New Year’s Day – January 1

Martin Luther King Jr. Day  3rd Monday of January

National Human Trafficking Awareness Day – January 11

International Holocaust Remembrance Day 1/27/25

NASA Day of Remembrance – January 27

If you would like to see the complete list, click here.

Thank you for the positive feedback on this monthly post.

Melinda

Reference:

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

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

Looking For Joy In 2025

2024 has been a difficult year for David and me health-wise. There are still unresolved health issues from my visit to The Mayo Clinic for which I have several specialists to see in 2025. The most difficult has been that David was diagnosed with three types of cancer this year. The first was CLL Leukemia, Skin Cancer, and most recently Small Cell Lymphocytic Lymphoma. It is common for Skin Cancer to follow Leukemia but the Lymphoma was quite a surprise. Leukemia and Lymphoma are two different cancers and very alarming to me. We’re still waiting to see if radiation treatment is the next step.

We don’t focus on it or the future, we rarely talk about it except after doctor appointments. We focus on the blessings we have and live life for tomorrow.

We know God has a plan for each of us and we are cool with his plan.

Melinda