Tag: flare management

Making the Most of Medical Appointments: Preparing for Your Appointment & Questions to Ask Your Care Team

Posted on by Karin W

Making the Most of Medical Appointments: Preparing for Your Appointment & Questions to Ask Your Care Team

Karin W

October 16, 2023

We only get a precious few minutes to give our Rheumatologists a rundown of our autoimmune disease symptoms and potential triggers, much less thoroughly discuss treatment options. Making the most of the limited time can make the difference in creating the most appropriate treatment plan for you. 

You can do a few things beforehand and during your appointments to effectively communicate with your doctor and get the care you need to live fully with an autoimmune disease. 

The best place to start is to describe your symptoms precisely. Invigorate Ambassador and Co-Host of the Invigorate Podcast, Chris Burton’s tip: Cut to the chase and give them just the facts. There’s not enough time to tell about your symptoms like you’re talking to a friend. 

In this blog, we’ll provide

  • Why and how noting and tracking symptoms can improve communication with your Rheumatologist and care team
  • 8 questions to consider when tracking and discussing your symptoms
  • 5 questions to consider asking your provider during your appointment

How to Get to the Facts: Tracking Symptoms for Better Understanding & Communication With Your Healthcare Team

When dealing with complex diseases and symptoms, recalling and accurately communicating your experiences to healthcare providers can be challenging. That’s why tracking your symptoms daily is a valuable practice that can provide you with a clearer understanding of your condition.

  1. Clearing the Fog: Symptoms of certain conditions, such as chronic pain or autoimmune diseases, can cause brain fog and make it difficult to remember specific details about how you felt in the past. By tracking your symptoms daily, you create a reliable reference point that helps overcome the challenges of memory recall.
  1. Identifying Patterns: Tracking allows you to identify patterns and triggers for your symptoms. By noting what you were doing, eating, or exposed to when symptoms occur, you may discover connections that can help pinpoint the underlying causes. This knowledge can assist your healthcare provider in developing a more targeted treatment plan.
  2. Assessing Progress: Regularly tracking your symptoms enables you to monitor changes over time. You’ll be able to observe whether your symptoms are improving, worsening, or remaining stable. This information is invaluable in evaluating the effectiveness of treatments and interventions.
  3. Facilitating Effective Communication: A documented record of your symptoms ensures clear and accurate communication with healthcare providers. You can share your tracked data during appointments, which helps your provider understand your condition comprehensively and make informed decisions about your care.

To effectively track your symptoms, consider these options:

Before you head into your appointment, review your symptoms log, make notes, and identify the key points to communicate with your provider. Consider the following questions to help you get started!

Here are 8 questions to consider when discussing your symptoms:

  1. When did the pain start? What were you doing when it started?
    Knowing the onset of your pain can provide valuable insights into its potential causes. Was it a gradual onset or sudden? Did it coincide with an injury or specific activity? Recognizing the trigger can assist your healthcare provider in determining the underlying issue.
  2. What does it feel like — sharp, dull, throbbing, achy, tender?
    Describing the quality of your pain can offer additional clues about its nature. Is it a sharp, stabbing sensation or a persistent ache? Does it throb or feel tender to the touch? Providing these details helps your healthcare provider narrow down possible diagnoses.
  3. How severe is the pain on a scale of 1 to 10?
    Quantifying the intensity of your pain on a scale of 1 to 10 helps your healthcare provider gauge the severity and assess the impact on your daily life. Being honest and specific is essential, as this information guides treatment decisions.
  4. How has it changed over the last few days or weeks?
    Tracking changes in your pain over time is crucial. Did it worsen or improve? Has it spread to other areas? Documenting these developments can aid in diagnosing the condition and evaluating the effectiveness of interventions.
  5. Does anything help the pain, such as over-the-counter (OTC) pain or anti-inflammatory medication or exercise?
    Informing your healthcare provider about any measures that temporarily alleviate your pain is essential. It could be using over-the-counter pain relievers, anti-inflammatory medications, or specific exercises. This insight assists in determining what approaches may be practical for managing your symptoms.
  6. How does the pain affect your daily routine?
    Understanding how pain impacts your daily activities allows your healthcare provider to comprehend the overall impact on your life. Does it limit mobility, interfere with work, or disrupt sleep? Describing these effects helps tailor treatment plans to address your specific needs.
  7. Is it worse when you get up in the morning?
    Morning stiffness and increased pain upon waking can occur in many conditions, such as arthritis or musculoskeletal issues. Noting whether your pain is more pronounced in the morning provides valuable information for diagnosis and treatment recommendations.
  8. Do you have any other symptoms that may seem related?
    Pain can often be accompanied by other symptoms that may seem unrelated but could offer additional diagnostic clues—for example, fatigue, sleep disturbances, mood changes, or digestive issues. A comprehensive overview of your symptoms ensures your healthcare provider has a holistic understanding of your condition.

    Open communication and an accurate description of your symptoms are crucial to receiving the most appropriate care. Take note of your experiences, be proactive in seeking medical advice, and work collaboratively with your healthcare provider to find the best strategies for managing and alleviating your pain.

How to Get More From Your Provider – 5 Questions to consider asking your provider during your appointment:

  1. I’m in pain; should I use the joint/muscle or rest it?
    Understanding whether rest or activity is the best approach for managing your pain is crucial. In some cases, gentle movement and exercise can promote healing and reduce discomfort. However, rest may be necessary in other situations to prevent further injury. Your healthcare provider can provide personalized advice based on your specific condition.
  2. How do I treat the pain? (Ice? Heat? Pain relievers?)
    Understanding the most effective treatment options for your pain is essential. Inquire about appropriate methods, such as applying ice or heat to the affected area. Ice can help reduce inflammation, while heat can ease muscle tension. Your healthcare provider may also recommend over-the-counter or prescription pain relievers to alleviate your symptoms.
  3. Are there other things I can do to feel better?
    Beyond conventional treatments, ask your healthcare provider about alternative therapies or complementary approaches that may help manage your pain. These could include physical therapy, acupuncture, massage, or mindfulness techniques. Exploring these options can provide you with a comprehensive pain management plan.
  4. Should I change my diet?
    Diet plays a significant role in overall health, including managing pain and inflammation. Inquire if there are any dietary changes or modifications that may be beneficial for your specific condition. Your healthcare provider may recommend an anti-inflammatory diet rich in fruits, vegetables, whole grains, and healthy fats while limiting processed foods and sugary drinks.
  5. Are there vitamins or supplements I could take to help reduce inflammation?
    Certain vitamins and supplements have shown potential in reducing inflammation and supporting overall health. Ask your healthcare provider if any specific supplements may benefit your condition. Omega-3 fatty acids, turmeric, ginger, and vitamin D are among the supplements studied for their anti-inflammatory properties.

Remember, these questions are a starting point for a productive conversation with your healthcare provider. Every individual’s situation is unique, and your provider will be able to offer personalized advice based on your medical history, symptoms, and diagnosis. You can work together to develop an effective pain management plan by actively engaging in dialogue and seeking guidance.

Invigorate Founder Karin Wagner and Brand Ambassador Baddest Chaplain Chris Burton, co-host a special podcast episode discussing how to Make the Most of Medical Appointments – Preparing for Your Appointment & Questions to Ask Your Care Team.

Let’s figure it out together, my friends.

Keep dancing,
Karin

Resources: Free Tools to Get More out of Medical Appointments

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Hair thinning and hair loss thanks to Autoimmune Disease and Chronic Illness effects

Posted on by Karin W

Hair thinning and hair loss thanks to Autoimmune Disease and Chronic Illness effects

Karin W

October 3, 2023

Shock and despair washed over me as I stared at the clump of hair in my soapy hand – a fun side effect of my immunosuppressant medication.

Hair loss can be devastating, and while there are alternative options, the experience can pile onto an already emotional load of coping with autoimmune disease symptoms and side effects. 

Alopecia, often associated with autoimmune diseases and chronic illnesses, goes beyond mere hair loss.

Man holding a clump of hair in his hand and distressed about it.

In this blog post, we delve into the complexities of alopecia, medical treatment options, alternative therapies, and ways to help embrace your look if you so choose to rock a new look! 

Understanding Alopecia, Hair Loss, and Hair Thinking with Autoimmune Diseases 

Alopecia areata, a medical term for hair loss or baldness, occurs in small, random areas on our scalp. Our immune system mistakenly identifies the hair follicles and nails as foreign to the body, leading to their attack. 

Researchers have found that alopecia areata results from an autoimmune response targeting hair follicles. This autoimmune response is triggered when the body’s immune system mistakenly identifies the hair follicles as foreign invaders and attacks them.

This mistaken immune response can also extend to the nails, resulting in white streaks across the nail and weakness and brittleness. It is essential to understand that alopecia is not merely a cosmetic issue but a medical condition with underlying autoimmune factors.

There are many classifications of alopecia areata. It all depends on how much hair you’ve lost and where the hair loss is happening on your body. 

  • Totalis means all of the hair on your scalp.
  • Universalis means all the hair on your scalp and your body hair.
  • Diffuse alopecia areata means the hair is thinning rather than falling out in patches.
  • Ophiasis alopecia areata means losing a band of hair on the bottom back sides of your scalp. 

Autoimmune diseases such as psoriasis, thyroid disease, diabetes, lupus, and vitiligo can increase the risk of alopecia. It’s a symptom that should be considered during the diagnosis process and treatment plan. 

Alopecia can also be a side effect of medications taken for autoimmune diseases. For instance, some immunosuppressants, including Methotrexate, can exacerbate hair thinning and loss, like in my case. 

The Nature of Alopecia Flares

The nature of autoimmune diseases like alopecia is such that they tend to have flare-ups and remissions. These flares can be unpredictable and may cause worsening of symptoms. It is common for individuals with alopecia to experience hair loss during flare-ups.

Chris Burton, Invigorate Your Autoimmune Disease Journey Podcast Co-host and brand ambassador, has shared that he experienced hair loss during his flare-ups but that it regrew after the flare ended. This is consistent with autoimmune diseases, where symptoms may wax and wane, often without apparent rhyme or reason.

While some individuals can ride out these flare-ups without significant long-term consequences, others may require more sustained treatment. 

Man getting his hair cut at a salon

Some strategies that may help manage alopecia flare-ups and promote overall hair health include using gentle hair care products, avoiding harsh treatments such as chemical relaxers or bleach, eating a clean diet, and managing stress levels. 

Additionally, some individuals may benefit from medications or other treatments to help manage symptoms during flare-ups. Working with a healthcare professional to identify triggers for flare-ups and develop strategies to manage symptoms during these periods is essential.

Medical Treatment Options for Alopecia

Treatment options for alopecia vary, and dermatologists play a crucial role in addressing hair loss and nail issues. We always think about dermatologists helping you with your skin, but they specialize in hair and nails too! 

Options such as corticosteroids, minoxidil, phototherapy, and topical immunotherapy may be prescribed based on individual cases. These treatments aim to reduce inflammation, stimulate hair follicle growth, and suppress the autoimmune response that leads to hair loss.

Sometimes, your rheumatologist may prescribe supplements, including folic acid or methofolate, to help mitigate hair thinning and hair loss, even when it’s caused by medications like some immunosuppressants. 

Dermatologists are an excellent resource for developing a treatment plan that suits one’s needs. Each person’s experience with alopecia is unique, and what works for one may not work for another. Therefore, it is essential to have a personalized approach to treatment.

Supplements May Help Promote Hair Growth and Prevent Hair Loss

It’s important to note that when considering alternative therapies for alopecia or hair loss, there is limited regulation when it comes to supplements. This means that the quality and efficacy of these products may vary. However, some supplements have shown promising results in promoting hair, skin, and nail health.

Collagen peptides have gained popularity recently for their potential benefits in supporting healthy hair, nails, and skin. Collagen is a protein that provides structural support to these tissues, and supplementing with collagen peptides can help replenish and support their health. Collagen peptides have also been shown to support joint health, which benefits individuals experiencing joint pain.

Man holding supplements in his hand

When choosing a collagen peptides supplement, it’s essential to look for brands that have certifications such as Certified Paleo Friendly and Keto Certified. These certifications ensure that the product meets specific quality standards. Choosing a non-GMO supplement, free from artificial flavors, sweeteners, and hidden fillers, is also advisable to ensure a clean and pure product.

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Sports Research Collagen Peptides is a high-quality collagen supplement that ticks all the boxes. It provides protein and amino acids to support healthy hair, nails, and skin. It is also backed by certifications and is free from unwanted additives, making it a reliable choice.

Another supplement that can help support overall hair, skin, and nail health contains biotin, zinc, and manganese. Biotin, a B vitamin, promotes healthy hair and nails. Zinc and manganese are crucial minerals in various biological processes, including hair growth and maintenance.

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Pure Encapsulations Hair/Skin/Nails Ultra is a high-quality supplement that combines biotin, zinc, and manganese to support overall hair, skin, and nail health. It’s essential to choose a reliable brand like Pure Encapsulations to ensure the purity and efficacy of the supplement.

While these supplements can promote hair, skin, and nail health, it’s important to remember that they should not replace a balanced diet and proper medical guidance. It is always advisable to consult with a healthcare professional or a registered dietitian before starting any new supplements, especially if you have underlying health conditions or are taking medication.

Alternative Therapy Options for Alopecia, Hair Loss, and Hair Thinning

However, it’s crucial to note that treatment options may not be effective for everyone. If the body does not respond to medical treatments or if the individual prefers not to pursue them, there are alternative therapy options people have had success with. 

One such alternative therapy that has gained attention in recent years is the use of essential oils.

Essential oils are highly concentrated plant extracts known for their therapeutic properties. They have been used for centuries in traditional medicine practices for various ailments, including promoting hair growth. Research suggests certain essential oils can benefit people experiencing alopecia or hair loss.

Person dripping essential oils on to their hands.

In a seven-month study published in the Archives of Dermatology, participants with hair loss who massaged a combination of cedarwood, lavender, rosemary, and thyme essential oils into their scalps experienced new hair growth. To ensure safe application, these essential oils were diluted with milder carrier oils such as jojoba and grapeseed oils.

Cedarwood essential oil is believed to improve blood circulation to the scalp, promoting hair growth. Lavender essential oil has calming properties and may help reduce stress, a factor that can contribute to hair loss. Rosemary essential oil stimulates hair follicles and improves hair thickness and growth. Finally, thyme essential oil has antimicrobial properties that help maintain a healthy scalp environment.

To use essential oils for hair regrowth, it is recommended to dilute them with carrier oils before applying them to the scalp. This prevents any potential skin irritation or sensitivities. A suggested dilution ratio is 2-3 drops of essential oil per tablespoon of carrier oil.

Massage the oil mixture into the scalp using gentle circular motions. Leave it on for at least 30 minutes before rinsing it out. For best results, repeat the process a few times a week.

Woman laying down with hair spread out next to a hair product spray bottle.

While individual experiences may vary, some people have reported positive results after using essential oils for hair regrowth. However, it’s important to note that essential oils should not replace medical advice or prescribed treatments. If you are experiencing significant hair loss or alopecia, it’s crucial to consult with a healthcare professional or dermatologist for a comprehensive evaluation and personalized treatment plan.

Additionally, it’s essential to be cautious when using essential oils, as they can be potent and cause allergic reactions or skin irritation in some people. Always perform a patch test on a small skin area before applying essential oils to the scalp.

Alternative Options to Embrace Changing Hair 

If medical or alternative treatments for alopecia aren’t suitable or don’t provide the desired results, abundant alternative options are available to help enhance your appearance and boost your confidence. Two popular options are hair extensions and wigs.

Hair Extensions

Hair extensions can be an excellent choice for those who want to add length, volume, or even just a bit of flair to their hair. With a wide range of colors, textures, and styles, hair extensions offer endless possibilities for trying out new looks. 

Whether you prefer a subtle enhancement or a bold transformation, extensions can help you achieve the desired effect. They can be attached through various methods, such as clip-ins, tape-ins, or bonded extensions, depending on your preference and the expertise of a professional stylist.

When dealing with hair that breaks off but doesn’t entirely fall out, hair extensions can be a viable option to help achieve the desired length and volume. Hair extensions come in two main types: synthetic and human hair.

Female hair stylist blow drying and brushing a woman's hair at a salon.

Synthetic hair extensions are crafted from artificial fibers and are generally less durable and long-lasting than human hair extensions. While they are more affordable than natural hair extensions, synthetic options have drawbacks. They can be challenging to care for and style, and they may not give as natural of a look as human hair extensions.

On the other hand, human hair extensions, also referred to as natural hair extensions, are made from real human hair. These extensions can be styled and treated like your hair, allowing seamless integration. Human hair extensions are more expensive than synthetic counterparts due to their quality and longevity. However, they offer a more natural appearance and can last longer with proper care.

One of the essential advantages of human hair extensions is their ability to blend effortlessly with natural hair, providing a seamless and natural look. They can be dyed, heat-styled, and even washed like your own hair. This versatility allows for greater flexibility in achieving the desired style or look.

One note to consider: synthetic hair extensions are typically more challenging to maintain. They can easily tangle, resulting in frequent split ends. Split ends occur when the tips of the hair look divided and lack the smoothness and natural appearance of undamaged hair.

Woman wearing makeup looks happy and joyful.

When considering hair extensions for hair that breaks off but doesn’t entirely fall out, it’s crucial to determine your priorities. If natural and long-lasting results are essential to you, investing in human hair extensions may be the best choice despite the higher initial cost. However, if affordability is a primary concern and you’re willing to put in extra effort for maintenance, synthetic hair extensions could be an alternative option.

Ultimately, the decision between synthetic and human hair extensions should be based on individual preferences, budget, and desired results. It’s advisable to consult with a professional stylist or extension specialist to assess your specific needs and ensure the best outcome.

Exploring Wig Options

Wigs are another alternative option that can completely transform your appearance. They offer a quick and convenient solution for individuals experiencing significant hair loss or wanting to experiment with different hairstyles. 

Wigs come in various styles, lengths, colors, and materials, allowing you to change your look or mimic your natural hair completely. They can be made from synthetic fibers or natural human hair, allowing for customization based on your preferences and budget. High-quality wigs are designed to provide a comfortable fit, natural appearance, and style freedom.

Inexpensive Synthetic Wigs: These are often cheaper but may be itchy and hot. They suit individuals requiring a temporary solution or experimenting with different hairstyles without investing in a high-cost wig.

Lace Front Synthetic Wigs: Slightly more expensive than basic synthetic wigs, lace front synthetic wigs offer a more natural look. The lace front allows for a seamless hairline, making distinguishing the wig from natural hair harder.

Human Hair Wigs: While they require more maintenance and upkeep, they are worth investing in for individuals who want to wear them regularly. These wigs offer the most natural appearance and can be styled and cared for like real hair.

Choosing the right wig option depends on individual preferences, budget, and lifestyle. It is recommended to consult with a wig specialist to find the best fit and style that suits your needs.

Hair wigs on a row of manikins

Both hair extensions and wigs can offer versatility and self-expression, allowing you to explore different styles and looks that suit your personality and desired image. They can enhance your existing hair or completely cover any areas affected by alopecia. Additionally, these options provide a sense of control and empowerment, as you can switch up your look whenever you please.

Working with a professional stylist or consultant specializing in hair extensions or wigs is essential to ensure the best fit, style, and maintenance. They can guide you in choosing the right option for your needs and offer suggestions on care and styling techniques.

Man holding comb and hair cutting scissors

Experimenting with hair extensions or wigs can be a fun and confidence-boosting experience. It’s a chance to explore different looks, enhance natural beauty, and embrace uniqueness. Don’t be afraid to step out of your comfort zone and try something new – you never know how it might positively impact your self-esteem and overall well-being.

Finding Strength and Support with People Who Understand Autoimmune Disease

Hair loss can be a significant emotional challenge, often impacting our identity. However, it’s essential to remember that we are not alone on this journey. Through the Invigorate podcast, we aim to bring the autoimmune community together by sharing valuable information and personal stories. Embracing who we are in any season of life can be a powerful act of self-acceptance and strength.

group of young adults supporting one another

Invigorate community member and brand ambassador Heather Knox shares her journey of embracing her shaved head and provides tips for feeling better with a new look, including fun glasses, makeup experimentation, and accessorizing with jewelry on the Invigorate Your Autoimmune Disease Journey Podcast.

Connecting with others who have experienced alopecia or other autoimmune conditions can provide a sense of belonging and understanding. The Invigorate Facebook group is valuable for those seeking emotional support and a safe space to share their experiences.

Embracing our unique appearance and finding support within the community empowers us to overcome the emotional struggles that may accompany hair loss. Remember, you are not alone – the Invigorate community is here to strengthen the autoimmune community by sharing stories, information, and hope. 

Sources: 

This blog post draws inspiration from various sources, including personal experiences, medical professionals, and reputable autoimmune disease organizations.

Listen to the “Coping with Hair Loss and Alopecia with Autoimmune Diseases” discussion on Spotify!

Prevention magazine: Herbal Remedies ALL-NATURAL CURES, July 2023

Hair Extensions Direct, What is Hair Extension? Here’s Everything You Need to Know – Hair Extension Direct

Disclaimer: Invigorate is supported by its audience. We may earn an affiliate commission when you purchase through links on our site.

Crafting Your Autoimmune Flare Care Strategy | Tips & Tricks for Managing Autoimmune Disease Flares

Posted on by Karin W

Crafting Your Autoimmune Flare Care Strategy | Tips & Tricks for Managing Autoimmune Disease Flares

Karin W

September 25, 2023

Living with an autoimmune disease can be akin to a relentless tug-of-war between self-care and life’s incessant demands. The daily battle with debilitating symptoms can be physically taxing, yet we often push ourselves to the limit.

As the saying goes, “If you neglect wellness, you will be compelled to find time for illness.”

People with autoimmune diseases grapple with extreme fatigue as their bodies are constantly on high alert due to an overactive immune system. The complexity and unpredictability of autoimmune diseases can make daily living challenging and stressful.

However, recognizing the signs of imminent flare-ups can help reduce anxiety and facilitate better preparation for potentially rough periods.

But how do you navigate through these flare-ups and create a care strategy that works for you? Here are nine tips and tricks to help you craft your own personalized autoimmune flare care plan.

  1. Track your symptoms and medication side effects
  2. Let Go of Guilt
  3. Communicate Openly
  4. Plan for Your Recovery
  5. Prioritize Self-Care
  6. Create a Comforting Space
  7. Find an Outlet
  8. Connect with Other Strivers Who Can Relate to Your Journey
  9. Continue to Explore, Discover, and Grow

Autoimmune Disease Management Tips:

1. Track Your Symptoms & Medication Side Effects

With time and experience, we become more attuned to our bodies and can identify potential triggers and trends.

Keeping a record of your symptoms, medication, diet, exercise habits, and potential triggers can provide valuable insights into your body’s patterns and help predict future flare-ups.

With the help of your healthcare provider, tracking symptoms can help you spot early warning signs, manage disease activity, and minimize exacerbations. This forms the basis of a Flare Care Plan, a strategy you can rely on during flare-ups.Female writing down her autoimmune disease symptoms and medication side effects

Stick to the facts when recording symptoms. Describe the symptom in detail, duration, and frequency. Having a precise log of symptom history can help you and your provider identify patterns and potential autoimmune disease triggers.

In addition, being aware of typical triggers such as stress, lack of sleep, and dietary changes can help you take preventive measures before flare-up strikes.

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Clever Fox Medical Notebook
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2. Let Go of Guilt

We can adopt a healthy lifestyle, track our triggers, and stay on top of medications, but flare-ups may still happen.

A guy standing looking slightly down with his hands behind his neck, head.

It’s important to remember in these moments that we are not to blame. Autoimmune diseases are complex and unpredictable, and flare-ups are a natural part of the journey. No matter how diligent we are, there will be times when our bodies push back.

At Invigorate, we encourage you to embrace self-compassion in the face of flare-ups and remind yourself that you are not alone on this journey.


3. Communicate Openly

Sharing your condition with others can be a decisive step towards fostering understanding and compassion within your community. Opening up about a chronic illness is undoubtedly an intimidating prospect, but establishing a support network can make a world of difference on your journey.

This support network extends beyond your personal relationships and includes your workplace. If your autoimmune disease affects your job performance, it’s essential to have open and honest discussions with your employer and colleagues.

Sharing your condition and any accommodations you may require during flare-ups can prevent misunderstandings and ensure a supportive work environment. Remember, your health should never be a cause for shame or secrecy.

Two people at a picnic table outside a building have a conversation

Equally important is letting your loved ones in on your condition. Communicating your needs and possible support requirements during flare-ups can help reduce stress and enable your close ones to offer the support you need. Whether it’s assistance with daily tasks, emotional support, or simply understanding when you need rest, having a solid support system can make a world of difference.

We understand that reaching out and sharing your experiences can be both vulnerable and empowering. At Invigorate, we encourage you to embrace your strength to open up about your condition.

By sharing your journey, not only can you alleviate the burden of carrying it alone, but you also help educate others about autoimmune diseases.

Your words can raise awareness, dispel misconceptions, and build a community rooted in compassion and understanding.


4. Plan for Your Recovery

When a flare-up strikes, it can feel overwhelming, leaving you grappling with the simplest tasks.

That’s why it’s crucial to plan your recovery ahead of time and enlist the support of your loved ones.

Knowing what help you need during a flare-up and openly communicating it can help reduce stress and create a solid foundation for recovery.

Consider creating a list of tasks that friends or family can help with during these challenging times. It can be as simple as reaching out for grocery shopping, preparing meals, or taking care of household chores.

A checklist of household chores, meals, and other needs that caregivers, friends, and family can do to help

This list gives you a clear sense of what needs to be done and empowers your loved ones by giving them specific ways to support you.

Remember, you don’t have to face the challenges of a flare-up alone. Lean on your support network and trust that they are there to help. Whether it’s running errands, providing emotional support, or simply being present, the assistance provided by your loved ones can make a significant difference in your recovery process.

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5. Prioritize Self-Care

During a severe flare-up, it’s essential to prioritize self-care above all else. The intensity of these episodes can be incredibly disruptive, often causing us to reevaluate our approach to life. Instead of pushing yourself too hard and risking prolonged recovery periods, it’s crucial to slow down and shift your focus to self-care.

Finding a balance between work and personal life becomes even more critical during flare-ups. Recognize that your health should always take precedence, and allow yourself the time and space to rest and heal.

This may mean temporarily stepping back from work obligations or seeking your employer’s support to adjust your workload. Remember, taking care of yourself is not a luxury; it’s necessary for effectively managing your autoimmune disease.

Maintaining a relaxed attitude during this time is also crucial. Stress and anxiety can worsen flare-ups and hinder the healing process.

Explore relaxation techniques that work for you, such as deep breathing exercises, meditation, or engaging in activities that bring you joy and peace. Embrace the power of self-care rituals, whether indulging in a warm bath, spending time in nature or seeking solace in hobbies or creative outlets.

It’s not about achieving perfection or pushing through the pain; it’s about listening to your body, honoring its needs, and giving yourself the compassion and care you deserve.


6. Create a Comforting Space

A comforting space can make a world of difference during long-lasting flares. When you’re dealing with chronic pain or illness, your surroundings can feel suffocating when you’re stuck at home or in bed. You can positively engage your senses and find solace by intentionally creating a calming environment.

Using technology to support your well-being is one way to create a comforting space. Podcasts and meditation apps can be beneficial in redirecting your focus and promoting relaxation.

Explore different genres of podcasts to find topics that resonate with you, whether it’s storytelling, guided meditations, or soothing music. Similarly, meditation apps offer many guided practices to help calm your mind and body. Remember to choose content that aligns with your personal preferences and needs.

A pug laying on the top of a soft white couch with blanket

Another way to enhance your calming space is by making minor changes to your physical surroundings. Consider using soft lighting, such as string lights or dimmable lamps, to create a gentle and cozy ambiance. Soft lighting can have a soothing effect on your senses, helping you relax and unwind. Additionally, lighting candles with calming scents, like lavender or chamomile, can create a peaceful atmosphere and promote a sense of tranquility.

Don’t underestimate the importance of comfort in your space. Invest in comfortable bedding, such as soft blankets and pillows, that can provide relief for your body during flares. Having a comfortable place to rest and relax can significantly reduce discomfort and improve your overall well-being.

Everyone’s needs and preferences differ, so feel free to experiment and adjust your calming space according to what works best for you. Whether incorporating nature-inspired elements, playing soothing background music, or adding a touch of your favorite color, personalizing your space can make it even more comforting.

You can transform your surroundings into a sanctuary of peace and tranquility by intentionally creating a comforting space. This dedicated space will provide relief during flares and serve as a refuge where you can recharge and find comfort amidst challenging times. So, take the time to create a space that nurtures your well-being and brings you the comfort you deserve.


7. Find an Outlet

In addition to providing an enjoyable escape from the challenges of chronic illness management, finding a creative outlet can benefit your mental health.

Engaging in activities like writing, painting, or playing music allows you to channel your emotions and express yourself uniquely and meaningfully.

A young child is holding a lot of crayons with both hands

For example, writing has been proven therapeutic and cathartic for many individuals. Keeping a journal can provide a safe space to unload your thoughts and feelings, helping you gain clarity and perspective on your experiences. It can also record your journey, allowing you to reflect on how far you’ve come.

Painting or engaging in other forms of visual art can be a powerful way to externalize your emotions and create something beautiful in the process. The act of putting brush to canvas or pencil to paper can be meditative, helping you focus on the present moment and find solace in the creative process.

Playing music can be incredibly therapeutic, whether as an instrument or simply listening to your favorite tunes. Music uniquely can tap into our emotions and transport us to different states of mind. Playing an instrument can provide a sense of accomplishment and allow you to express yourself through melodies and rhythms.

Of course, finding a creative outlet doesn’t have to be limited to artistic pursuits. Spending quality time with loved ones can be just as valuable.

Two women talking outside on a restaurant patio

Whether engaging in meaningful conversations, sharing laughter, or simply being in each other’s presence, connecting with others can provide a sense of belonging and support during challenging times.

Remember, the goal of finding an outlet is not necessarily to become a professional artist or musician but rather to find a source of joy and self-expression. So, explore different activities, experiment with various mediums, and embrace the process without judgment. Finding an outlet that resonates with you can cultivate a healthier state of mind and enhance your overall well-being.


8. Connect with Other Strivers Who Can Relate to Your Journey

Living with an autoimmune disease can indeed be a challenging and isolating experience. The journey can often feel overwhelming, as it involves navigating through various symptoms, treatments, and lifestyle adjustments. However, it’s important to remember that you are never alone in this journey.

Connecting with others who share similar experiences can provide a tremendous sense of community and support. These individuals understand firsthand the unique challenges and frustrations of living with an autoimmune disease. You can find comfort, empathy, and a sense of belonging by sharing your stories, struggles, and triumphs with others.

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Through our Facebook Community and virtual events, you can engage with a diverse community of individuals who are facing similar challenges. Whether you’re seeking advice, sharing coping strategies, or simply looking for a listening ear, you’ll find people who are ready to offer support and understanding.

Together, we can embark on this path of living with an autoimmune disease. By supporting and empowering each other every step of the way, we can navigate through the ups and downs, celebrate victories, and find solace in knowing that we are not alone. Invigorate is here to be your companion, providing a safe space where you can connect, thrive, and find the strength to face the challenges that come your way.

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Living with an autoimmune disease presents its fair share of challenges, but it’s crucial to remember that you are not alone. You can navigate flare-ups more quickly and confidently by implementing the tips and strategies mentioned in this article, such as tracking symptoms, releasing guilt, communicating openly, planning for recovery, and prioritizing self-care.

Invigorate is here to support you every step of the way, providing a community and resources to help you thrive despite the complexities of autoimmune diseases. Remember, you have the power to take control of your health and well-being, and you deserve support, understanding, and compassion throughout your journey.


9. Continue to Explore, Discover, and Grow

It’s essential to continue educating yourself about your condition and staying connected with others who can relate to your experiences. By being proactive and advocating for yourself, you can ensure your needs are met and you receive the care you deserve.

Moreover, as research and medical advancements continue to progress, there is hope for better treatment options and potential cures for autoimmune diseases. It’s essential to stay informed about new developments in the field and stay hopeful for a brighter future. In the meantime, remember to take care of yourself and prioritize your well-being. Don’t be afraid to reach out for support when needed, whether from friends, family, or a professional therapist.

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Lastly, always remember that your autoimmune disease does not define you. You are more than your symptoms and diagnosis. You are a unique individual with strengths and passions that go beyond your health. Don’t let your condition keep you from living a fulfilling and meaningful life.

Embrace your journey and all it entails, as it can shape you into a stronger, more resilient person. Keep fighting, stay positive, and remember you are not alone on this journey. Together, we can raise awareness and create a support community for those living with autoimmune diseases.

Let’s continue to share our stories, educate others, and advocate for better care and understanding of these complex conditions. So keep pushing forward, never lose hope, and know you are not defined by your illness. Your strength and resilience will guide you through this journey and help you live life to the fullest despite any challenges that may come your way.

Keep Striving!

Karin

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10 Tools to Nurture You Through Autoimmune Disease Flares & Other Tough Times Living With Chronic Illnesses

Posted on by Karin W

10 Tools to Nurture You Through Autoimmune Disease Flares & Other Tough Times Living With Chronic Illnesses

Karin W

May 22, 2023

It’s possible to be in remission for long periods, especially when living a healthy lifestyle, mostly eating nutritious food, staying physically active, managing stress, and maintaining meaningful relationships.

While living a healthy lifestyle is your best chance at keeping disease activity at bay, environmental triggers, life events, and overbooked schedules can each be enough to put our health into an unexpected tailspin.

One winter, I had been eating clean, managing stress, and plugging along just fine each day. Without warning, I was horizontal on my couch with what we thought was the flu. It’d been going around the office, so I wasn’t surprised I caught it. It’s difficult to avoid getting sick while taking immunosuppressants.

After three weeks of no improvement, I was admitted to the hospital, where they ran a gamut of tests. The worst part was my new “roommate,” constantly groaning in pain, sounding like a dying animal, making it impossible to get any sleep. Overly exhausted, undernourished, and missing my kids terribly, I felt every ounce of this autoimmune disease crushing my spirit.

In those moments of utter despair, it’s important to have tools to use anywhere at any time to help you cope with sensory overload and work through tough situations.

Go-To Tools to Help You Through Tough Times with Autoimmune Diseases and Chronic Illnesses

When your world feels like it’s crashing down, your focus should be comfort and self-care. That can be difficult when emotions are running high, so our community has compiled a list of tools to keep in your back pocket for the next time you unexpectedly need them.

1. Your Breathe

When we’re anxious, our bodies tense up, our breathing shallows, and an abundance of cortisone/stress releases into our systems. To reduce anxiety quickly, deep breathing is the surest, most effective way to reduce heart rate. Our bodies are very trainable; we must tell them what to do. The simplest way to do that is to breathe out longer than when you inhale.

Guided meditation videos and podcasts are a great way to learn various breathing methods. Training your mind and physiology through breath has been shown to reduce anxiety while increasing focus and concentration, which can also help with brain fog.

2. Change Views

Getting outside isn’t always feasible, especially if you’re stuck in a hospital room, but changing rooms, or even just chairs, can give you a quick boost in mood. Sometimes even the slightest shifts in perspective can spark a new and hopefully more positive chain of thoughts. Looking at positive images can influence your mood if you have limited mobility.

3. Get Thanking

There is always something to be grateful for. The simple act of noting or writing down a few things you’re thankful for helps squelch negative thinking and helps put things into perspective. It also creates an attitude shift that can positively impact everything from our relationships to our health.

Gratitude is an antidote to worry, stress, and anxiety. It also improves happiness by increasing positive emotions like joy, contentment, love, and pride. Gratitude helps people sleep better and increases energy levels and appreciation for others.

Two easy ways to practice gratitude:

1. Expressing gratitude verbally (to yourself or someone else). Thanking someone who has helped, been kind to you, or brightened your day goes a long way.

2. Note what you’re thankful for in a journal or mobile app. Any notebook will do, but journals and mobile apps like Gratitude offer prompts to help you get over any blocks.

4. Get Grounded

Have you heard of grounding or earthing? It’s the idea that connecting with the earth by walking barefoot or lying on the grass can positively affect the body. And it turns out; science is starting to back this theory up.

Research has shown that grounding can help reduce inflammation and pain and improve mood. Amazingly, something as simple as taking off your shoes and connecting with the earth can profoundly impact your health and well-being. So next time you have the chance, why not try it? Who knows, it might just make you feel a little better.

5. Watch Nostalgic Shows

We’re giving you permission to veg out! The familiarity of nostalgic shows can provide security and calmness, especially when life is chaotic. Mindless shows are also easy to turn on in the background to help decompress in the short term. Set a timer or show limit because too much screen time can exacerbate depression symptoms.

6. Listen to Music

Music has a way of affecting our mood like no other.

It’s amazing how a good beat and catchy lyrics can turn a bad day into a good one in minutes. Whether you’re into pop, rock, hip-hop, or classical, it’s all about finding what works for you. Sometimes, all it takes is a few tunes from your favorite artist to get you out of a funk. So pop in those earbuds, crank up the volume, and let the music take you to a better place.

7. Light Hobbies

You know those days when your body doesn’t want to cooperate? When even getting out of bed feels like a Herculean feat? Those are the moments when having a few go-to hobbies in your back pocket is essential. Maybe it’s knitting, puzzling, or coloring. Maybe it’s something else entirely. Having a favorite activity that doesn’t require a ton of physical stamina can be a game-changer. Not only do they help you pass the time, but they can also work wonders for your mental health.

When you’re feeling anxious or stressed, there’s something incredibly soothing about focusing on a creative project for a while. So next time you’re in need of a bit of zen, reach for your crafting supplies and get to work. Your body (and mind) will thank you.

8. Family and Friends

Relationships are the ultimate human experience. When nurturing and long-lasting, they can bring about a sense of belonging and purpose that is hard to come by otherwise.

The feeling of being seen and valued in a relationship is powerful, and it can boost our mood and self-worth in ways we may not realize.

When we have someone who listens, understands, and appreciates us for who we are, we feel more able to express ourselves and show our vulnerability. And, of course, having a supportive partner or friend can make all the difference in our daily life.

But did you know that chemicals in our brains are released when we form close and loving connections with others? Dopamine and endorphins are two of the many feel-good hormones that can make us feel happier and more fulfilled. Lean into your close relationships, especially during challenging times.

9. Faith and Spirituality

Faith can be tricky because it often intersects with religion, which people have strong opinions about. At our community, we believe that spirituality comes in different shapes and sizes, and you can lean into whatever resonates with you.

Whether it’s religion, the universe, or any other belief system, there’s power in positive thoughts and prayer that can help us find peace even in the midst of chaos. It’s amazing how letting go of the things we can’t control can strengthen our faith. So, take a deep breath and trust that your beliefs will guide you.

10. Develop a Flare Care Plan Before You’re in a Flare

Anyone with an autoimmune disease knows flare-ups and tough mental health days can be a real struggle. When you’re in the thick of it, it can feel like trying to climb a mountain with a backpack full of bricks. Everything seems difficult and exhausting. That’s why a plan is so important before you hit rock bottom.

When you’re feeling well, set up a support system and pick out activities you enjoy and find relaxing. That way, when things get tough, you’ll have a blueprint for caring for yourself during hard times. The simple act of having a plan can help us through.

Try the Tools Before You Need Them

You know what they say, practice makes perfect! The same goes for your toolkit. Don’t wait until you’re in a crisis to experiment with different tools. Take your time to try different tactics and see what works best for you.

The great thing about trying out new tools when you’re open-minded is that you may discover something you never thought would work for you. Plus, once you find what works, you’ll already be a pro when using it in a real situation. So don’t be afraid to get out there and try something new. Trust us – your future self will thank you.

Celebrating Self-Acceptance and Perseverance through Parenting with a Chronic Illness

Posted on by Karin W

Celebrating Self-Acceptance and Perseverance through Parenting with a Chronic Illness

Karin W

May 5, 2023

Surviving: chronic fatigue, hair loss, chronic pain, anxiety, depression, nausea, dizziness, bouts of confusion and inability to focus, insomnia, memory issues, headaches, joint pain, etc.

Striving: a diagnosis! and treatment

How long have you been on your journey with autoimmune issues? While I haven’t been diagnosed, I’ve dealt with autoimmune issues for about a decade. At the very least, I’ve been dealing with something chronic for at least that long.

What was your turning point in looking to improve your health? Basically, now. This is a new journey for me. I’ve put on significant weight and have noticed that even light physical activity that I used to do easily exhausts me within minutes. As the mother of an active 6-year-old, I need to be able to walk alongside her while she scooters around town, sit on her bedroom floor for an hour and play ponies, carry her to bed when she falls asleep on me on the couch.

But I also do it for me. I miss looking in the mirror and not hating myself. What I see isn’t even an echo of what others see because whatever it is I’m dealing with has warped my own perceptions of myself beyond recognition.

And I miss having the energy to actively participate in my life.

What’s something you’ve learned along the way?

Something that’s been a rude awakening, but also freeing, is that what I’m dealing with is (mostly) invisible. It’s hard to offer others the benefit of the doubt when they keep nudging me to do this or that when I’m out of spoons or offer inane advice like smoothies and jogging, but the flipside of that is that what I am frustrated with myself for right now they don’t see.

I shaved my head because my hair loss became depressing. Others see a badass, someone who doesn’t care what others think, an artistic temperament, a free spirit. (And to some extent, they’re not wrong, even if I’ve lost track of her.)

I see dark circles under my eyes, thirty extra pounds, stretch marks, and patches of scalp. I see my calendar and all the events I missed out on. I see my daughter’s eyes when I let her know we have to head back inside because I’m just too tired to continue again.

I know what got me here, and I can hate it all I want, but here’s the thing: most people just see another human living their life. They meet you for the first time wherever you are in your journey, and that’s who you are to them. You see every moment of your own life, the behind-the-scenes exclusive; they see snapshots.

If they judge based on that, eff them. And honestly? I don’t think most bother.

What advice would you give someone starting in their autoimmunity journey?

Meet yourself where you are. It’s okay to want more and to work towards it, and the desire to improve your situation is crucial to seek out the support you need–but on those days where you just can’t? Don’t, and don’t feel bad for it.

What are you currently striving for?

Above all, a diagnosis and treatment–whatever that looks like. I have difficulty making it to appointments, and severe medical anxiety, so I know it will be a long road. But at the end of the day, having a diagnosis will give me a basis for making more informed decisions about my health.

Follow Heather on social: @almostmidwest on Facebook & Instagram. Contact us to share your story.