Halsey Celebrates New Diagnoses

Read more

Self Care Case: What do you carry?

Read more

Navigating Tube Feeds On-the-Go

Read more

Kids With PICC’s: Teddy’s Story

Read more

Emily’s Care Team Tips

Read more

Athletes Advocating for Mental Health

Read more

Latest Post

Disability Pride Month
Chronic IllnessMightier TogetherThe Undefeated

Disability Pride Month

by Ariela Paulsen
written by Ariela Paulsen

Featured above: Friends in the Fight celebrating Disability Pride — @survival_of_the_sickest, @maddiexgordon, @taylorthetransgineer, @kristendoornbos, @thedisabledhippie

As June winds down, I often feel a twinge of sadness knowing that Pride Month will end.  I don’t care much that the silly rainbow-themed products in big box stores will be moving to the clearance section.  It’s the coming together of community that brings me so much joy in June.  My queer and trans friends shower a little extra love on one another.  We show up together at parades and brunches and wear our identities a bit louder.  While I know that my city hanging flags doesn’t bring systemic change, it does make my heart a bit fuller, my step lighter.  I feel seen, loved, and part of something bigger than myself.

I take some time, each June, to think about the work that is still to come and how I can help to move the needle forward.  I learn about the incredible trans and queer activists who brought us Pride and the many societal improvements that LGBTQ+ folks have today.  It is remarkable just how many of these activists are BIPOC and/or disabled.  Some have had to fight for equality on several fronts – race, gender, sexual orientation, religion, disability… This intersectionality is at the core of the queer and trans rights movements.  It also plays out in how we celebrate pride (see me pictured below with my friend at Pride, celebrating the importance of staying hydrated for our POTS diagnoses – him in a wheelchair and me in rainbow compression socks).  It is evident in the demographics of our support communities.  It is also part of the history of Disability Pride Month.  

Disability Pride Day was first held in Boston in July 1990, following the passing of the Americans with Disabilities Act (ADA) on July 26, 1990.  This celebration included the first Disability Pride Parade, which was organized by Diana Viets, a disability rights activist, and Catherine Odette, a queer activist and creator of the Dykes, Disability, & Stuff newsletter. Disability Pride Parades have been held in over a dozen cities around the US since the first parade in Chicago in 2004, and in July of 2015, former NYC mayor Bill De Blasio declared July “Disability Pride Month” ahead of New York’s first large-scale Disability Pride Parade.  

Ironically, this movement has gained visibility since the start of the pandemic.  As celebrations turned virtual, disabled communities around the world realized that these online venues are more accessible for many participants.  Visibility campaigns included those who may not have been able to march, but could post on social media each day of July about what disability means to them.  Our friends and family – not to mention the larger audiences of reposted content – could witness the nuances of what disability can look like.  They could get involved and learn without having to physically show up.

More on how the pandemic has affected accessibility here.

At this moment, when many disabled folks feel isolated in a society resuming “normal” life, Disability Pride Month is a way to connect and be seen.  Let’s share our stories.  Share the pride (because, yes, we are proud to be disabled!) as well as the bad days.  Let’s post pictures of what disability can look like so that our diverse community is not reduced to an icon on a blue sign.  And let’s learn!  Read, watch, and listen to others’ experiences.  Use your platforms to repost and elevate the stories being shared.  If nothing else, let’s spend this July spreading love, empathy, and pride in our many intersecting identities.

Happy Pride and Disability Pride to all of you, my dear Friends in the Fight ♡

www.thehiddenco.com

0 FacebookTwitterPinterestEmail
Myasthenia Gravis Awareness Month
Chronic IllnessFriends in the Fight

Myasthenia Gravis Awareness Month

by Ariela Paulsen
written by Ariela Paulsen

June is Myasthenia Gravis Awareness Month.  If you have never heard of MG, you are not alone!  We reached out to Friend in the Fight Katie McCurdy to shed some light on this autoimmune condition that affects tens of thousands of Americans.

Katie McCurdy is an autoimmune patient, designer, and founder of Pictal Health, a company helping patients tell their health stories visually. Learn more at katiemccurdy.com and pictalhealth.com.

diagnosis 

When I was 13, I was sitting at dinner with my family and my mom said, “why are you laughing like that?” I ran to look in the mirror and was met with a strange, snarling expression instead of my usual laughing face. 

The symptoms came on that quickly. Perhaps it wasn’t overnight, but it was very fast. Sudden facial weakness meant I was having trouble smiling and playing the clarinet, and my arms tired while washing or brushing my hair. My eyes felt droopy and I had double vision while looking to the right. I felt fatigued all the time.

I was incredibly lucky that my pediatrician immediately suspected Myasthenia Gravis, a neuromuscular autoimmune that causes weakness. She referred me to a local neurologist who confirmed the diagnosis within weeks of my first symptoms. 

symptoms 

Myasthenic weakness is caused by a breakdown in the nerve synapse. But what that weakness looks like can be different from person to person; they call MG the ‘snowflake’ disease because it affects everyone differently. 

There are common sub-conditions: Ocular MG, which affects just the eyes and causes double vision and eye drooping, and Generalized MG which causes more widespread weakness. Many people with generalized MG have weakness in their limbs that makes it difficult to stand, walk, and lift their arms above their head. As someone’s symptoms worsen during a flare, they may have trouble talking, chewing, swallowing, and even breathing – this is called a myasthenia crisis and can potentially be deadly. 

I am lucky that my symptoms have not affected my limbs too much, and I have also never had a breathing crisis. But my facial weakness – the inability to smile or make normal facial expressions – affected me mentally and emotionally for 25 years. I would avoid talking to people in public if I wasn’t having a strong face day. I would worry that my smile/snarl would come across as sarcastic or just plain weird. 

diagnostic delays

Many people face years of symptoms before finally getting their diagnosis (the average time to get an autoimmune diagnosis is about 4.5 years). I am grateful my path was so short and efficient. 

I have personally known people who have been through horrible, demoralizing diagnostic journeys on their way to an MG diagnosis. A family friend, a man in his 70s, went through multiple eye surgeries that attempted to ‘fix’ his newly droopy eye; but since the eye was drooping due to MG muscle weakness, these surgeries were ineffective and frankly totally inappropriate – his ophthalmologist should have known that MG could be the cause of a droopy eye. 

Another friend has faced extreme medical gaslighting because she is one of the 10% of MG patients who do not have detectable biomarkers that could lead straight to a diagnosis – and she happens to have a mental health history. She has been told over and over that her symptoms are in her head, as she struggled to walk, stand, hold her head up, chew, swallow, and even breathe – classic and dangerous symptoms of runaway MG. 

treatments

Fortunately, there are a few different treatments for MG patients. I’m not an expert in all of them, but I’ve taken a medication called Mestinon for 30 years; I’ve also taken the corticosteroid Prednisone for 25 years. (My doctors are not happy about this, as Prednisone leads to osteoporosis and other side effects, but my body has become dependent on it so I continue to take a low dose daily.) Prednisone is one of many immunosuppressants, drugs that reduce the immune system’s activity and therefore reduce autoimmune symptoms. I take another immunosuppressant called Cellcept, which was originally used in organ transplant patients. 

Even with these three drugs, my symptoms were still noticeable and interfered with my daily life. Finally, in 2017 I started IVIG – IV Immunoglobulin infusions. Within a few days, my MG symptoms were simply gone. I had a strong smile for the first time in 25 years. My voice strength came back, and my eyes felt more ‘open.’ I felt more alert. I could fully participate in yoga classes, and my arms and legs quickly became stronger. Now I get home infusions (administered by my awesome home infusion nurse Amy) two days per month, for five hours each day. 

Finding a treatment that works has been life-changing. I’ve had more strength and energy at work, and finally don’t have to worry my voice will give out when I’m giving presentations. My inner extrovert has finally been released: I am happy to stop and talk to any friend or acquaintance at any time! 

So life is drastically improved for me (though I still deal with rolling symptoms from my other autoimmune condition, Sjogren’s Syndrome, and allergic symptoms resulting from Mast Cell Activation Syndrome.) 

IVIG has worked for me, but it doesn’t help everyone. Many people continue to try different treatments without fully resolving their symptoms. Right now, there are some new MG drugs being released – I feel hopeful that patients like me will have lots of options and that more folks will find something that works for them. 

community 

I haven’t really been an active part of any MG communities. Since I got MG when I was 13, and the condition mostly affects older people, it was hard for me to identify with others at the MG support groups I attended. I did travel to Miami one year to attend the Myasthenia Gravis Foundation of America’s annual conference, and I met lots of other young people there; the experience was really important to me and helped underscore just how different each person’s symptoms are. 

tips for other MG patients

Find a doctor who listens and who understands MG. My neurologist, Michael Hehir at the University of Vermont Medical Center, always makes time to answer my questions and is up-to-date on best practices and treatment options for MG. It’s a huge relief to know I have a doctor I can count on. 

My first neurologist gave me a tip that I’ve used many times: If you’re having double vision due to MG, wear an eyepatch or put a piece of scotch tape over one lens of a pair of glasses. This effectively limits your vision to one eye and makes it easier to get through your day.

Watch out for magnesium. This supplement can be helpful for many, but it can also flare MG symptoms. I’ve re-learned this recently.

Stress and lack of sleep are big symptom triggers for me, and I suspect they are for others. Stress management is one of the best things we can do for ourselves. 

It’s worth playing with dietary changes to see if this helps your symptoms. I have found that my autoimmune symptoms calm down when I avoid foods that have dairy and gluten. But each person’s food triggers are different.

And of course, be kind to yourself and meet yourself where you are! With autoimmune conditions, we don’t know what each day will bring. 

0 FacebookTwitterPinterestEmail
Body Image and Mental Health in the Time of Covid
General Wellness

Body Image and Mental Health in the Time of Covid

by Ariela Paulsen
written by Ariela Paulsen

Each year around June, I notice a smidge of angst rising in a small corner of my mind.  The lingering chill of winter in New England is finally fading and, while I am here for it, the rising temperatures come with some baggage.  Heat is my #1 trigger for symptoms, both from POTS and MCAS.  The best way for me to manage those symptoms is to strip away layers of clothing, ideally spending the hottest days in the water.  And yet…

Chronic illness can come with some body image complications.  For starters, the dissonance of having a body that routinely doesn’t work “right” can impact our psyche.  Then come the years of weight fluctuations, scarring, and other visible reminders of the lack of control we have over our bodies and our illness.  Worst, perhaps, are the comments we receive about these physical changes.  Being sick and malnourished can result in compliments and the medication or feeding tubes that make us healthier often result in concerns over our weight gain.  The very devices that help us with mobility or access to care become reminders to those around us that we are sick or disabled, something that they may not have thought about before these wonderful tools made it visible.  While we may grow to see these changes as positive, even lifesaving, messaging from others can again confuse our brains into feeling shame or embarrassment about how they look.

We have explored these ideas before, of body positivity, representation of sick and disabled bodies, and respecting your body’s needs and differences.  But now, thanks to the pandemic (as always), we have new wrinkles to address.

Covid’s impact on routine

The last two years have thrown a wrench in every aspect of life.  We may have experienced different waves of change, like the initial lockdown in which we didn’t worry about routines, assuming this was all “temporary.”  Then, when it seemed more long-term, many used the quieter quarantine lifestyle to implement previously challenging changes.  Online exercise classes became easier to access and closed restaurants meant exploring new cooking adventures from home.  As things dragged on and began opening up, routines continued to shift.  This impact has looked different for each of us, but studies have shown some overall trends: 

If your body has changed in appearance over the last two years, give it some love!  Know that you are not alone, that your body is coping with changes in routine and stress levels, and that this is normal and natural.  Working to re-establish healthy routines can be wonderful for self care, but it’s helpful to be mindful of the goals we set because they help us feel healthier and happier, versus the goals we make because of body shaming.  If working towards a healthier future, don’t forget to also love your body as it is today ♡

mental health in general 

The state of mental health during the pandemic, especially in our youth, is a frequent headline these days. As days spent in the classroom or office became days spent in front of a computer screen, accessing social support became more difficult.  To compensate, many turned to social media, and consumed more media than ever before.  Anyone with existing challenges in their home environment had to spend more time in those conditions, with less access to supportive programs and care.  The general stress of living through a pandemic – not to mention the social and political unrest during that time – impacted conditions like anxiety, depression, and eating disorders.  

Eating disorders, in particular, have seen an increase in a wide range of triggers.  People experiencing anxiety and depression are more likely to develop an eating disorder, and the pandemic’s general uncertainty as well as the loneliness of quarantine complicated recovery. Early medical intervention can help prevent eating disorders from worsening, and the pandemic’s shift to Telehealth disrupted this care.  Social media messages, especially for teen girls, can tip the scales towards an eating disorder.  The changes to eating or exercise routines and weight fluctuations mentioned above may also have played a role.

While eating disorders and other mental illnesses are not always associated with body image, if this is coming up for you this time of year know that, again, you are far from alone in this challenge!  It is ok to seek help – you can talk to your doctor, find a therapist, and turn to friends and family for support.  

**Tip: having trouble finding a mental health provider who takes your insurance and isn’t full right now?  Try searching PsychologyToday.com – filter for providers who take your insurance, and then display results in reverse alphabetical order.  Most providers in the first half of the alphabet are full right now, but you may find more luck just by starting from the other end!

food insecurity

Perhaps a surprising factor in body changes and eating disorders has been food insecurity.  Anyone whose paycheck or cost of living was affected by the pandemic may feel some stress around buying food.  Healthier foods tend to be more expensive and delivery services for folks afraid of in-person shopping charge additional fees.  Supply chain issues have also caused random shortages of types of foods, such as chicken and milk.  Those with dietary restrictions or a history of food insecurity are particularly at risk, but many Americans have reported feeling stress over access to food in the last couple of years.  This stress around food has contributed to overall anxiety and eating disorders – both binging and restricting.  Feelings of guilt around food, even for financial reasons, can impact body image as well.

Thankfully, food access seems to be improving as the country opens up, although financial stress continues for some families.  Resources like WIC, local food pantries, and community gardening efforts to plant an extra row can help bring healthier food to your table.

Whatever this season brings up for you, we hope you will be kind to yourself and your body!  

0 FacebookTwitterPinterestEmail
Accessing Medical Supplies
Chronic IllnessFriends in the FightMedical DevicesTreatment and Care

Accessing Medical Supplies

by Ariela Paulsen
written by Ariela Paulsen

Mighty Well was created when Emily Levy, our co-founder, was instructed to cover her new PICC line with a cut sock. She set out to find a better option and – when that failed – created the PICCPerfectⓇ PICC line cover!  This has been our mission from day one: to create the products we wish we’d had so that future patients can have the style, safety, and confidence they deserve.

And we are not alone – adaptive wear and medical product innovations have risen to fill the needs of patients who have come out of the woodwork to break down the stigma and barriers that kept our experiences in the shadows for so long!  There are so many products out there now that can make life with chronic illness smoother.   Many of them are even covered by health insurance.  But getting these products can come with red tape and barriers galore.  Now with Covid’s disruptions to supply chains and longer wait times for providers, these products have become even harder to obtain.

I recently experienced this when my thumb began subluxing.  I have Ehlers-Danlos Syndrome, so unstable joints are just a fact of life; but when my thumb was out of place, I couldn’t even lift a small book or plate of food.  My physical therapist, who specializes in EDS, prescribed me a special thumb splint.  I tried hers on and it was a miracle!  My insurance would cover the cost, but I needed a script from my PCP (who isn’t knowledgeable about EDS).  My PT faxed the information to my PCP who then mailed me what I thought was the same prescription (and stupidly I didn’t look). I then researched which medical supply stores had it and found three stores in my general area (one being a couple of hours away). I called the closest store — they didn’t carry it. I called the second store and they said yes, so I drove ~45 minutes… only to find they didn’t have it. They asked to see my prescription to see if they had anything similar and when I opened the envelope it literally just said “wrist splint” — no brand, no specifications, not even accurate anatomy, since it was my THUMB, not wrist!  I didn’t even bother trying the third store. I just bought it on amazon and gave up on having insurance cover it.  Fifty dollars and weeks later, I tried it on and it fit totally differently than the one my PT had loaned me. It makes my thumb go numb and causes pain in my arm, so I never wear it.

Let’s face it, chronic illness requires a sense of humor sometimes, and this was one of those moments!  The number of ridiculous barriers and mishaps was simply laughable.  Thankfully, I was able to find exercises that keep my thumb in place better, but the more I told other patients, the more I found that my experience was far too common!  We asked our Friends in the Fight to share their experiences to bring light to this issue:

Julie

I recently enrolled in a state program to get help with housework because I just physically can’t do it on my own. Although one has nothing to do with the other, it caused my state health insurance to drop my HMO. That just means the state is handling my insurance instead of a 3rd party now. For most people this isn’t an issue, but no one ever actually told me about this change! I found out when I tried to order supplies for my feeding tube and it wouldn’t go through.

The other reason it hurts me is because the occupational therapist I see doesn’t take state insurance. Because I have so many rare conditions, finding another OT who would help me (or even just not hurt me) is like finding a needle in a stack of needles! She has special training and experience that makes her uniquely qualified to treat me.

I spent at least 10 hours over 3 days on the phone trying to sort out this nightmare. That doesn’t include the hours I’ve spent sobbing because I’m in an impossible situation of choosing the health care I need or the home care I need. And it is still not fixed.

No disabled person should ever be in this position. I am only allowed to get whatever care the government allows even if they know both are necessary. I spend hours every week on the phone, sending messages, traveling to find the few specialists who can treat me, and researching new providers when old ones leave or stop helping.

I have been so physically and mentally drained from fighting so much just to survive in a world not made for me. 

**Update: since writing this, Julie reached out with some good news! “I finally got home care AND occupational therapy covered through the state program! It’s been an exhausting fight, but I finally see my OT again this Friday!”

Anneliese

@this.simple.little.life

Brand ambassador Anneliese reached out via video because, let’s face it, many brains prefer video format! Watch above to hear her story about managing pain symptoms through red tape.

Mary Kathryn Rivera 

@marykathrynpraises

@mary.kathryn.rivera

I have gastroparesis and malabsorption so I generally need IV versions of medications for the best chance of it working.  When I need to get simple things like antibiotics some doctors will say ohhh I can’t do that, you have to be admitted… My primary has no issues ordering the stuff. It’s just hard when I can’t get in.

These stories are far too common.  What these systems (and the healthy folks around us) often don’t understand, is that we don’t have extra time and energy to spend on overcoming these obstacles.  We are already so short on brain space and spoons that spending half an hour on the phone with insurance agencies might mean we don’t have the energy to do our physical therapy that day.  The stress of not knowing if we will have access to the products we need could mean that we spiral into another flare.  We may not have the money to pay out of pocket when we’re too sick to work full time.  Sometimes the costs of attempting these feats of bureaucratic acrobatics don’t feel worth the benefit of maybe getting a product that could help.  

At Mighty Well, we’re starting to think about a broader mission – could we not only create new products but also help patients access the wide range of products they need?  Our gears are spinning, so stay tuned, but in the meantime feel free to check out our favorite vascular access products (and where to find them) here!

Do you have medical supply product go-to’s, or tips for getting your hands on them?  We’d love to know!  Email listenup@mightywell.com or join our Friends in the Fight facebook group and share your story.

0 FacebookTwitterPinterestEmail
4 Tips for Creating a Disability Inclusive Workplace
Chronic IllnessHealthy Work EnvironmentsMightier Together

4 Tips for Creating a Disability Inclusive Workplace

by Ariela Paulsen
written by Ariela Paulsen

Diversity and inclusion in the workplace can have benefits for all involved.  Not only does it make our society more equitable, but having diverse perspectives – and listening to those voices – is good for business.  We all bring different experiences and strengths and are mightier together.

Wanting to be more inclusive is wonderful, but hiring more diversity without shifting the culture and setup of your workplace can actually be harmful, as the new employees may find themselves in situations that do not meet their needs. If actually creating an inclusive work environment feels overwhelming, that’s ok! Change is hard, especially when you’re not sure the best way to go about it.

As a company driven by patients with disabilities, we know what it’s like to try to find the right work environment.  We’ve written about searching for jobs that fit your needs and advocating when needs aren’t met. But this heavy-lifting doesn’t need to be all on employees!  If you are an employer wanting to make your own business more inclusive for folks with chronic illness and disabilities, here are some tips to get you started:

we are capable

Inclusion of employees with disabilities may seem trickier than inclusion of folks with diverse races or genders.  Some employers worry that this may mean disabled workers won’t be able to do a good job.  It’s true that, by definition, our disabilities may make aspects of a traditional job difficult, but that does not mean we are any less capable or valuable than abled employees!  We all have strengths and weaknesses.  Someone unable to access a second-floor office may be a great leader.  Someone with a compromised immune system who needs to work from home at times may be incredibly efficient.  Someone with hearing impairments may be uniquely creative.  The label “disabled” does not actually tell you anything about an employee’s potential.  In fact, the only thing it does tell you is that this individual has had to find their way in a world that is often not accommodating; this need for frequent workarounds creates tremendous resilience, problem solving, and communication skills – all extremely valuable in a workplace!

This understanding, that people with illness and disabilities are uniquely capable workers, was the foundation for Chronically Capable, an organization that helps connect sick/disabled jobseekers with inclusive employers.  It was founded by Hannah Olson, a disabled Lyme-warrior who knew her potential was much more than what she could bring to an unaccommodating workplace.  It works like other job listing sites, but more than just searching for skill sets, resumes, and job descriptions, Chronically Capable asks its users about specific accommodations – can you offer flexible hours? Remote work? Visual aids?  Even better, Chronically Capable provides education and resources for employers, so not only can you attract jobseekers by displaying which accommodations you are able to provide now, but they can make your journey to become more inclusive much easier.  

understanding accommodations

Ok, so you want to be more inclusive and are willing to learn what that might mean for your company, but the legal side of providing the necessary accommodations for folks with disabilities has you feeling nervous.  That’s ok!  The ADA (Americans with Disabilities Act) may not be familiar to you.  This resource can help you navigate its nuances.  Nervous about holding conversations with your employees about what “reasonable accommodations” might look like?  Here is a guide to help you think things through before a meeting with a disabled employee.  And finally, here is a list of potential accommodations that can help you think outside the box!

the small stuff can make a big difference

If you have not lived with chronic illness or disabilities, you may feel overwhelmed when thinking about how to accommodate the wide array of disabilities employees face.  The good news is that there are many small steps you can take that make a massive difference.  Not only that, but most of these tweaks can benefit all employees – not just the ones with relevant disabilities!  For example, written agendas sent before meetings may help people with brain fog or hearing impairments, but are also just good for introverts.  A few examples:

  • Live captions on zoom calls and videos
  • Spaces with different lighting/noise-level options, and scent-free spaces
  • Seating (and standing) options
  • A refrigerator can help with tricky food needs, medications, or breastfeeding moms
  • Accessible presentations
  • Remote work options

now is the time

The Covid-19 pandemic has held a magnifying glass to the gears that keep our society running.  While it has come with significant pitfalls, many people with illness and disabilities have actually found their needs are better met since 2020.  Remote work allows us to be in our own space, with all the supplies and accessibility we need.  It also tends to allow for a more flexible schedule, so anyone who benefits from naps, daytime IV infusions, or frequent meals no longer has to make these needs visible.  We can work laying down or with comfortable clothes. 

We know these changes are possible.  Now is the time to make these options available even when not in lockdown.  Yes, working in person can be beneficial for collaboration, morale, informal check ins, etc.  But having the option for remote work when it’s not necessary opens the doors to many who would otherwise be unable to meet their potential.  For folks with conditions that come and go, being able to work remotely during a flare could mean the difference between continuing to work vs having to take a leave of absence.  Note that, like all accommodations, it is likely that abled employees will benefit as well!  Parents may appreciate being able to work from home when their kids are sick.  People with long commutes may get more done if not wasting an hour navigating transit.

Not only are our workplaces in a state of flux from the pandemic, but we also have a worker shortage.  Advertising your workplace as accessible to a variety of disabilities – and using this fluctuating time to actually shift your environment to be inclusive – can give you an edge to attract the talent you want!

0 FacebookTwitterPinterestEmail
Halsey Celebrates New Diagnoses
Chronic IllnessFeatured

Halsey Celebrates New Diagnoses

by Ariela Paulsen
written by Ariela Paulsen

Singer-songwriter Halsey is all about realness.  They have been open about struggles with endometriosis for years.  When they had their first baby last July, they publicly spoke about prioritizing time with their son over time spent trying to get back into shape, and posted a gloriously honest video about what postpartum bodies can look and feel like.  They were upset over comments about how good they looked after performing on SNL; they shared all the work, costuming, and lighting that goes into that image, and that they wanted the world to see what their body really looks like.

More recently, Halsey started getting comments that they “look sick” or had lost too much weight.  Halsey responded by sharing that they looked sick “BC I AM!”  They had been experiencing increased symptoms ever since pregnancy and were still looking for answers.  This month (right in time for Ehlers-Danlos Awareness Month!) Halsey finally got the diagnoses they’d been seeking for years, after being hospitalized for anaphylaxis.  The list includes EDS, MCAS, POTS, and Sjogren’s, in addition to the previously diagnosed endometriosis.

Fans were dismayed to hear that Halsey was sick, but the singer was actually relieved!  Those of us who took years to find our own diagnoses may understand this response – Halsey shared that they’d always been sick, they just finally have validation!  They are hopeful that they can use this new information to heal and get back into the things they love.

Halsey posted on Instagram about the gaslighting they’d experienced before these diagnoses, saying “I went to doctors for 8 years. Trying to figure out what was wrong with me. I was called crazy and anxious and lazy amongst other things… When I wasn’t working I was essentially confined to my home for fear of how I’d feel when I woke up each morning. It took me a long time to get to even having a diagnosis so I’m celebrating!”

We are so grateful for people like Halsey sharing what life with these conditions is truly like!  We celebrate this news with you, Halsey, and wish you well on what we hope is a healing journey ♡

0 FacebookTwitterPinterestEmail
3 Tactics For Managing Anxiety Attacks
General WellnessMightier TogetherTreatment and Care

3 Tactics For Managing Anxiety Attacks

by Maria del Mar Gomez
written by Maria del Mar Gomez

Anxiety disorders are the most common mental illness in the U.S., affecting over 40 million adults in the United States age 18 and older – 18.1% of the population –  every year.  I am one of them. If you have an anxiety disorder too, you are not alone. There are 3 main factors that helped me manage anxiety attacks, and ultimately, learn how to prevent them.

1. self-discovery: identify your triggers

Anxiety is normal, even healthy. The danger comes when it becomes overwhelming.  It can be helpful to try to understand what is causing higher than normal levels of anxiety for you.

I haven’t shared this with a lot of people, but several years ago I was driving by myself at night and got into a car accident that quickly set off a panic attack. That was my first ever panic attack. The ambulance took me to the nearest hospital and after the doctor assured me I was now safe, he also warned me that this first panic attack could set off a panic attack disorder.  Unfortunately, he was right on point.

I had several follow-up panic attacks and spent countless distressed nights with barely any sleep. As soon as this started, thankfully, multiple family and friends recommended I see a therapist – and I will be forever thankful they did. 

I found a psychiatrist who diagnosed me with a generalized anxiety disorder with panic attacks. Apart from having me explain what were the situations in my life I thought were the cause of my anxiety, she asked me to write down what I was thinking or doing just before the panic attack started – my triggers. I quickly noticed that I had two recurring ones: The first was driving alone at night (probably due to the car accident) and the second one was any issue related to my health; any physical symptoms I had would quickly evolve in my head and detonate an anxiety attack. 

2. develop a mental health routine

To prevent the anxiety attacks, I avoided driving after dark by myself at all costs. For the second trigger, I ran to CVS and got one of each OTC medication for any possible health challenges I thought I could potentially face, and I would take them around with me everywhere. 

These tactics helped, but obviously, I knew this wasn’t sustainable. My doctor prescribed an SSRI (selective serotonin reuptake inhibitor) and I started therapy on a monthly basis. After hours of self-discovery and trigger recognition, I was able to create a mental health team and a lifestyle that incorporates self care – both allowed me to turn my life around!

To this day, I maintain this routine, which includes 6 main pillars: 

  1. therapy
  2. nutrition
  3. exercise
  4. medication
  5. work-life balance
  6. spiritual techniques, such as yoga and mindfulness 

I’m still on my daily anxiety medication (SSRI) and I still feel compelled to travel with at least my basic medications and anxiety-attack prevention. However, I was able to stop all of my panic attacks and began doing all of the things I had been afraid to do before.

3. in-the-moment interventions

In addition to prevention, my therapist helped me to create a set of interventions for whenever I recognized the symptoms that I would get just before an anxiety attack. I now feel prepared each day by keeping these items with me in my Self Care Case:

  • anxiety medication: taken regularly at the same time each day (before bedtime)
  • essential oils: I carry a small bottle of lavender essential oils – the strong smell helps to break the mental blockage in my mind and helps me shift my mind’s focus. If I am home, a hot shower with lavender bath soap can do wonders.
  • chamomile tea: I carry 2-3 chamomile tea bags, and will swiftly prepare them and hold the cup of hot water in my hands and focus on the smell and feel the warmth in my hands. 
  • allergy medication: I carry allergy medication with me because one of the symptoms of my anxiety is hives. The allergy medication helps to calm this down. 

I never expected this sudden twist in my life, but I am grateful that this conversation has become more open and less stigmatized. It has been comforting to know I am not alone and to have supportive friends, family, and providers who can share their own tips and help me build this routine. Anxiety disorders are highly treatable, yet only 36.9% of those suffering receive treatment. By sharing my story, I hope this helps others that have gone through a similar experience to me. If you feel comfortable and empowered, I invite you to share your story too. Do you have a go-to routine for reducing anxiety?  Join the conversation in our Friends in the Fight facebook group!

0 FacebookTwitterPinterestEmail
Top 3 Digital Medication Organizers
Chronic IllnessFriends in the FightTreatment and Care

Top 3 Digital Medication Organizers

by Ariela Paulsen
written by Ariela Paulsen

When I was 24, horribly ill, and desperate for a diagnosis, I went to my doctor seeking answers.  She was very kind and listened politely but then said “you’re actually quite healthy.”  Dumbstruck, I asked how she had come to that conclusion after hearing my list of symptoms.  She replied “well, you’re not on any medications.”  I can still feel my heart drop into my stomach just thinking of those words.  Is being sick with no diagnosis “healthy”?  Is being diagnosed with no known treatments or cures “healthy”?  The outlandishness of it made me want to laugh.  

A year after that visit (and my vow to find a new doctor), I found my diagnoses.  And so began a slew of treatments.  Some were helpful, some were not.  Still others were simply nutritional to supplement my strict elimination diet.  When I finally had so many pills (in addition to multiple vials of liquid medication) that I had to buy a jumbo-sized pill box, I actually laughed out loud.  If only that doctor could see me now!

Keeping track of these medications is dizzying on the best of days, and near impossible with thick brain fog.  Yet staying on top of things is so important to staying healthy.  I am grateful for products like the Self Care Case that keep all my gear in one place, but that’s only part of the puzzle.  Being able to remember to take medications on time is a challenge of its own.

More on managing medications here.

We recently reached out to our Friends in the Fight to find out what digital organizers have helped them keep track of medications.  Here are some of the cool tools they suggested:

MediSafe

MediSafe is a customizable app created to help patients keep track of medications.  It offers an easy platform to create a medication schedule and “just in time interventions” to keep you on top of that schedule.  The technology can also identify trends of when you tend to forget or mix up medications, and offer suggestions to help you develop better habits.  While the app is patient-centered, you can also share your account with your care team – both medical providers and loved ones – so that you don’t have to do this alone!

Drugs.com

This is a website with helpful information about medications and the conditions they treat.  The list of resources offered is quite long but includes comparison tools, a drug interaction checker, and discount cards.  Their medication guide app helps you keep track of your medications and create a printable medication record to share with your providers – no more racking your brain and getting a hand cramp from writing them all down before every visit!

CareZone

CareZone organizes more than just medications.  It can track your health data, such as blood pressure or heart rate.  It can order your medication refills so that you don’t have to worry about running out.  And for that medications list at your doctor visits, just scan each med’s label and it will create the list for you!

Do you have a system or tool that works for you?  Join the conversation in our Friends in the Fight facebook group!

0 FacebookTwitterPinterestEmail
7 Things I Wish I’d Known About Motherhood With Chronic Illness
Chronic IllnessFriends in the FightThe Undefeated

7 Things I Wish I’d Known About Motherhood With Chronic Illness

by Ariela Paulsen
written by Ariela Paulsen

This will be my first Mother’s Day as a mom, and I am bursting with thoughts and feelings.  So much work, energy, healing, and luck went into making this possible.  I have been open about my journey – my fears of not being able to conceive, but also of getting pregnant and then being too sick to be a good mom.  Being pregnant in the first half of this pandemic and then with an unvaccinated baby as the world opens up (despite no end to the virus) have been adventures of their own.  I feel eternally grateful for the support of my Friends in the Fight – my community of patients and their loved ones who get what it’s like to live with chronic illness.

While I’ve had an outpouring of love and encouragement from my Friends, I’ve had an even larger spout of questions!  My not-yet-parent patient Friends are always eager to hear more about what it’s like.  I remember that feeling myself, before deciding it was time to give parenthood a go.  I genuinely didn’t know – could I do this?  Could my body withstand pregnancy?  Childbirth?  Would I have the energy to enjoy parenthood?  Was there anything I could or should do beforehand to give myself and my child the best chance?

And so, on this my very first Mother’s Day, I’d like to share the insights I’ve learned about being a sick mom:

**Note: these are my insights, based on my experiences alone.  Just like every chronic illness experience is different, no two pregnancies are the same.  

1. healing first 

I always knew I wanted to be a mom, and I knew it wasn’t going to be easy.  I decided to do everything I could to prepare my body beforehand.  At one point I hit a wall, wondering how on earth I could find the time for this healing.  Thankfully, I was laid off a few months later… this period of unemployment was challenging in its own right, but it allowed me the space to focus on finding good care and the time to rest.  I saw a million specialists, nailed down a diagnosis (or three), and diligently tracked my symptoms and triggers to figure out what I could do on my own to avoid future crashes.  I honed in on a diet and exercise regimen that caused more good than harm (who knew that existed??).  And did I mention rest?  I let myself sleep and lay down to my body’s content.  And what a world of difference it all made.  The fog lifted, the constant pain eased.  My gut learned, for the first time in over a decade, what it felt like to work properly.  Not only did this healing result in my hormones self-regulating, allowing me to conceive without intervention, but it gave me the energy and routines I needed to get through the next chapter of my life.

This healing was made possible by lucky timing, constant support, and immense privilege.  I am ever grateful to have had this opportunity.  It also took a lot of hard work, and I mention all this because I am glad daily to have done that work.  It gave me tools and habits that I lean on every day.  It’s tough, with a baby, to find moments to cook or exercise, for example.  I spent years perfecting the recipes and workouts developed during my healing year so that they are now second-nature.  I can’t imagine trying to figure out all of that as a new parent. 

2. my body will never be the same

I think rationally I knew this on some level, but I continue to be floored (sometimes literally!) by how drastically my body was altered by pregnancy.  I have seen my body change from illness over the years –

  • weight fluctuations
  • pallor
  • scarring
  • stretch marks
  • various degrees of joint deterioration…

but having so much change over less than a year was remarkable.  My hair got so thick and then all fell out.  My thighs grew multiple sizes and then disappeared.  Most surprising were the beneficial changes – my spine, which has been fairly unstable for years with vertebrae that rotate and misalign regularly, was solid for the entire pregnancy!  My food allergies evaporated, allowing for cravings with no histamine restrictions!  Sure, my hips and SIJ didn’t appreciate the extra pressure, and I had my fair share of nausea and headaches.  But most of my symptoms actually improved!  After years of fearing that my body couldn’t handle pregnancy, it turned out to be the healthiest year I’d had in quite some time.  The improvements lasted for several months after she was born, too.  I woke up every day with the relief of another day unencumbered.

Not all of the shifts bounced back, however.  My pelvic floor, which was further jeopardized by EDS, has not found its way back to a state of comfort and function.  My bladder, already prolapsed years ago, makes peeing exhausting these days.  It seems my abs will never be what they once were.  My periods are remarkably different, but my cycles seem more regular.  Less impactful, my feet grew half a shoe size, requiring a trip to the shoe store.

3. pregnancy is not the only option

I loved being pregnant, and I am so fortunate to have had a positive experience!  I know many others, especially with autoimmune issues, who found similar relief from pregnancy, sometimes permanent.  One EDS specialist actually told me that she had a patient who chose to have five children because she felt so much healthier when pregnant! There are many, however, who have not been so lucky.  My sister — despite sharing genetics and diagnoses — struggled with joint laxity, food allergies, and POTS throughout pregnancy.  I’ve met MCAS patients who were asymptomatic until pregnancy.  While it’s scary to not know which experience will be yours, there are other options for becoming a parent.  Of my group of chronic-patient-new-parent friends, one chose adoption and another chose surrogacy.  Both feel that the decision they made was right for their body, and it has been wonderful to witness each process.  Pregnancy and birth were two of the most impactful experiences on my body, and while I am glad to have done it, I think it is likely that I will choose another option in the future.

4. setting up supports

This one is huge.  I recently read Hunt, Gather, Parent by Michaeleen Doucleff.  I highly recommend – it was an easy read full of rich cultural traditions and beautiful parenting ideas.  Perhaps the biggest takeaway for me was that we were never meant to do this alone.  Parenting works best when it’s not just done by one or two people in isolation.  Enlisting the support of grandparents, childcare workers, friends, aunties… they’re not just good for parents, but wonderful for the kids as well.  This is especially crucial for parents with chronic illness.  I simply do not have the stamina to care for a baby all the time, especially not if trying to also earn income.  My partner and I made the decision to cohabitate with my parents.  This move was challenging (as I’ve written about here) but has been a wonderful shift. The caregiving roles and responsibilities can now be pooled.  Whether I am too sick to cook, my daughter is screaming at 3am, or my parents need tech support, the weight of this care does not fall on one person.  The night shift was especially crucial.  When my partner went back to working nights, I was very afraid for my health.  I do not function without sleep.  My incredible parents took shifts with the baby to make sure I could get rest.  They communicated boundaries to make it sustainable – for example my insomniac mother would take the baby if she was already awake but didn’t want to be woken from precious sleep unless absolutely necessary.  Often I would have to wait to sleep during the day.  But they made sure that I got enough sleep to not have a health crash.  Whether you’re able to live directly with others or not, having a variety of people around who can offer a nap, an extra set of hands, or a frozen meal makes a tremendous difference.

If you struggle with asking for help (you and me both!), here are some tips.

5. postpartum isolation

Despite being surrounded by supportive people, I have found this journey into parenthood to be far more lonely than I ever imagined.  I have not experienced postpartum depression per se – thanks to SSRI’s and lots of therapy – but I have had days in which I felt incredibly lonely.  The pandemic certainly hasn’t helped; my conditions being genetic (and linked to long Covid) means we’ve been very careful about exposing our daughter to unmasked strangers.  So if I’m with her, I can’t even go to the grocery store to interact with adults.  Between Covid outbreaks and skyrocketing costs, we haven’t been using daycare.  Which means my partner and I trade off caring for her, so we don’t get much time just us.  Most of my friends work 9-5, so by the time they would be ready to hang out in the evening it is already cutting into my daughter’s bedtime routine.  Being chronically ill has made me a champ at long stretches of time alone, but it also means that feelings of isolation trigger me to think about times of illness.  

There is also an unfortunate shadow of sexism cast over the entire experience.  Many men in the US aren’t offered paternity leave.  Neither of us got any paid time off, but my husband was only able to take a week off, period.  With him going back to work weeks before me, patterns were set in place.  I took care of our daughter and home because he was busier than me.  I got up at night because he needed to be able to function at work.  These patterns were necessary at the time, but are difficult to break now that we are both working.  I work from home so that I can be available to feed her without dealing with pumps and bottles, while my partner gets to hang out with coworkers all day.  I have also seen female friends lose out on career opportunities because of having a kid, while their male partners receive promotions the same year.  These inconsistencies make the loneliness harder to bear, knowing that my gender makes the isolation so much heavier than if I were male.

I always imagined motherhood as a magical time of love.  While I still feel moments of that magic, I wish I had known going in how lonely it would also be.  I wish I had set up routines for connection – and set expectations with my partner – beforehand.  We are just getting these things teased out almost a year in.  Weekly walks (ideally in nature!) with friends, especially other moms and their babies, go a long way.  Scheduled weekly time for self care, rest, or activities that make me feel like me have become a must.  Regular conversations with my partner to check in about how we’re each doing and if things feel balanced are also helping quite a bit.  

6. kids love the floor

My two biggest concerns about having a baby were being able to hold them and being able to stay upright.  EDS, one of my diagnoses, has made my shoulders and elbows quite unstable.  I can’t even take out the trash anymore.  Every time I’ve held a baby in the last few years I’ve had to give them back after just a few minutes.  How could I possibly be a mom?  Similarly, I also have POTS, a form of dysautonomia that makes me feel sick every time I have to be upright.  How could I rock or bounce a baby if I can’t stand?  The good news is that my daughter doesn’t know anything different!  I rock her in a rocking chair or bounce her on a ball.  I use carriers, strollers, and slings (or whoever’s around) when my arms can’t do the lifting.  The greatest discovery has been how much babies love being on the floor!  Not only that, but she loves it when I join her on the floor. This is my ideal situation!  I spend hours of every day just laying down.  I even have a memory foam mattress topper and a plethora of pillows on the floor so that I can lounge without too much pain or joints popping out of place.  We have toys and books within arm’s reach and the space is babyproofed enough that if she were to crawl away, I don’t need to chase after her.  All of my fears of what would happen on a bad day have evaporated.  Sure, there are occasional days when I can’t safely parent, and #4 is crucial in those cases.  But for medium-bad days, I can get the rest I need without her knowing the difference.  I never knew another human being to be so perfectly on my level.

7. teaching my truth

This one has not come up in practice quite yet, as my daughter is not quite speaking.  I read Glennon Doyle’s Untamed while pregnant and something that resonated with me was the idea that we don’t need to hide our painful truths from our kids.  We aren’t necessarily doing them favors by sheltering them from our struggles or by pushing through our pain to “show up” for them.  When we do this, we teach them to not have boundaries, to not care for themselves.  What if, instead, we show them our truth and model what it looks like to practice self care?  I have watched my sister raise her children through debilitating symptoms and thought about how I’d want to proceed, should I get that sick again.  The odds of my kids having my illnesses are quite high.  I want them to know that it’s ok to be sick.  Better yet, that it’s ok to share their experience, to not hide, and to advocate for their needs.  So although I know my daughter doesn’t understand many words yet, I find both comfort and strength in telling her my needs on those bad days. 

Mama has a lot of pain today. 

Mama is very tired. 

Let’s play on the floor now, but if I’m feeling better later, I would love to go walk outside! 

Thank you for the quiet snuggles – Mama really needed that today… 

Sometimes she will smile, kiss my face, and then play with her toys while I take a minute to close my eyes.  In those moments, I know that yes, I can do this.  We can do this ♡

0 FacebookTwitterPinterestEmail
Self Care Case | Mighty Well | What do you carry? | travel
Chronic IllnessFeaturedFriends in the Fight

Self Care Case: What do you carry?

by Ariela Paulsen
written by Ariela Paulsen

Whether you live with chronic illness, live a fast-paced life on the go, or are just one of those oldest-sibling-types who’s always prepared, a good organizer is a game changer.  The Self Care Case was designed by patients to hold the many pills, vials, and devices we need day-to-day.  But just like us patients, it holds far more than just one identity.  This new and improved version of the Mighty MedPlanner is also for bringing chapstick and snacks on a hike or ski trip.  It’s for breath mints, a comb, pocket calendar, or cozy socks.  As a new mom and chronic patient, I carry meds, eye drops, snacks, and personal fan… but also an extra pacifier and burp cloth.  

We checked in with some Friends in the Fight about what they pack in their new Self Care Case:

Maria Del Mar Gomez

Mighty Well Co-Founder, @MightyWell_Maria

“I take my Self Care Case every day to work and on all travel occasions – whether I’m traveling for the day or for a multi-day trip, when I’m traveling home to the Dominican Republic to visit family or for work trips. 

Having this med Case with me gives me peace of mind that every time I leave my house, I know that I have all of my health essentials in one place. Whether it’s myself, a friend, or a team member who’s unwell – I love being able to get them what they need! The team knows they can count on me to have painkillers handy for those awful headaches that often come unexpectedly, or antihistamines for seasonal allergies. 

In the last couple of weeks, I’ve been traveling to multiple cities. I first went home to DR to visit family. Of course, we stopped at the beach for a weekend, and my brother started to get nauseous in the boat – which I was able to quickly remedy with the nausea medication in my Self Care Case. 

A week later, I went to Miami for one of my best friend’s wedding. We all know that wedding days can be incredibly hectic, and accidents often happen. I had packed apparel tape and a box of band-aids in my Self Care Case in case my shoes would hurt me (after hours of dancing). As I got ready with the rest of the bridesmaids, the dad of the bride-to-be rushed in looking for band-aids for one of the other ladies in the bridal party. I quickly offered what I had brought in my Self Care Case. Around five hours later, during the party, the dress strap of one of the bridal party members broke mid-dancing! Again, my Self Care Case came to the rescue with the apparel tape I had packed in it. All in all – a very successful trip.

When it comes to packing my Case, I am very intentional – I always make sure to include these items:

1) Basic meds: I pack medications to address common ailments, including headaches, stomach aches, allergies, muscle pain, etc. 

2) Anxiety treatments: My doctor prescribed a daily medication that I take every night to manage my anxiety levels, along with self care items I use when I feel an anxiety attack approaching which help me to prevent it. 

3) Useful emergency items: These depend on where I’m traveling to – usually, they include my phone charger, hand sanitizer, and a face mask. “

Amanda Phillips

Brand Ambassador,  @chronicallymandy02

Mandy is an advocate for chronic illness. She shares her journey to help others feel like they aren’t alone and that there are others going through the same thing. We asked what she carries in her Self Care Case.

“I carry:

  • my daily medication
  • my emergency meds (inhaler, EpiPen)
  • my mask
  • a card with my emergency contact info
  • a list of my medications
  • an ice pack for my meds

I also carry the Take Self Care pad so I can prioritize tasks through my day!”

See Mandy’s full post here.

Madison Irby

Brand Ambassador, @missmaddieo

“Let me list everything it holds…

1) Glucogon/syringe/needles.💉

2) Rubbing alcohol pads. 🧼

3) Emergency meds. 💊

4)Epi pen. 🐝

5) peppermint essential oils.

6) @eukawell – their essential oils blend.

7) lancets/lancing device (this is your reminder to change your #lancets )

8) Blood glucose monitor/ #dexcom receiver. 🖥️

9)Test strips to calibrate or during signal loss.

10) And lastly glucose tabs/ #hypotreats”

See Madison’s full post here.

Meghan Bayer

Brand Ambassador, @megsmiracles

“In my Self Care Case, I carry my glucometer, lancets, test strips, a vial of insulin that I can keep cold with the ice pack on our sunny, hot :hot_face: southern days, an extra Mighty Well Mask, a packs of sugar for a portable, quick low treatment, and my cell phone. I keep a pen in the kit as well, so I can mark my blood glucose readings on my glucose tracker!”

See Meg’s unboxing video of the Self Care Case here.

0 FacebookTwitterPinterestEmail
Load More Posts