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Latest Post

The Ultimate Guide to FSA/HSA Spending Accounts
Adaptive WearChronic IllnessGeneral Wellness

The Ultimate Guide to FSA/HSA Spending Accounts

by Emily Levy December 12, 2022December 21, 2022
written by Emily Levy

At Mighty Well, our goal is to make our products accessible to our community. That is why we accept Flexible Spending Account (FSA) dollars to purchase Mighty Well products! For those who have FSA/HSA benefits, you use it just as you would a credit card at checkout. If you’d rather use your regular credit card, you can email us for an itemized receipt to file a claim. Check with your family’s primary insurance holder to see if you have this benefit.

It is important to note that your insurance plan/provider determines reimbursements. While most Mighty Well products are eligible, your insurance provider has the final say in whether or not you will be reimbursed. Mighty Well does not have control over what insurance providers deem as eligible for reimbursement.

Below is a simple-to-understand guide on how to use FSA/ HSA funds before the end of the year:

You can save a lot of money on healthcare by using FSAs and HSAs accounts. Many people often need help knowing when and how to use these accounts once they’ve set them up. The good news is they can be used for a variety of out-of-pocket healthcare costs, such as:

  • Over-the-counter (OTC) products like Mighty Well’s PICCPerfect®, Self Care Case, Fluid Motion Backpack, and Masks
  • Medical testing
  • Copayments
  • Deductibles
  • Prescription drugs

Since it’s the end of the year, here’s a small reminder of what FSAs/HSAs are, who’s eligible, and how they help you save money.

HSA vs. FSA: What’s the difference?

HSA: Healthcare Savings Accounts

  • This is a tax-advantaged account to be used only for healthcare expenses
  • It can be rolled over in its entirety from year to year. Applicants must have a high-deductible health plan that covers at least $1,400 for individuals and $2,800 for families
  •  Enrollment in an HSA is done via an employer or private insurance
  • You can contribute to a health savings account with pre-tax dollars, which reduces your taxable income

FSA: Flexible Spending Accounts 

  • Similar to HSA, but less flexible
  • This is only offered as an employee benefit, and it doesn’t come with you when you change jobs 
  • The IRS has set a $3,650 maximum contribution to an individual FSA and a $7,300 maximum contribution to a family HSA for 2022
  • This is the more common type of account
  • Younger, healthier people tend to be more conservative about their FSA allotment than people with chronic conditions that require ongoing treatment

Do I Lose my FSAs Dollars At the End of Each Year?

Unfortunately, Yes. Different from HSAs, unused balances in FSA accounts don’t usually roll over into the following year. You will forfeit any unused funds unless offered a grace period or your employer’s FSA plan explicitly allows a rollover. Just know the IRS limits this rollover to $570. For this reason, it is essential to consider how you contribute to an FSA based on your estimated medical expenses.

What does an FSA/HSA cover exactly? 

There are subtle differences between individual plans for each FSA and HSA account. Frequent uses of the account are out-of-pocket medical, dental, and vision expenses, including deductibles, copays, and prescription medication. They also cover any number of OTC medicines, devices, and products, including several products from Mighty Well. Insurance premiums are not covered by FSA/HSA accounts.

Use your FSA or HSA card mightywell.com to take advantage of your benefits!

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Chronic Illness

Gift Ideas For Chronic Illness Warriors & Friends in the Fight™

by Maria del Mar Gomez November 18, 2022February 2, 2023
written by Maria del Mar Gomez

From new PICC patients, chronic illness warriors on the go, and all the Friends in the Fight™ in between, we’ve got the perfect gifts for everyone this holiday season. Whether you are looking for a comforting present for a sick friend, someone who’s homebound, or a care package for a sick mom – pick one or more of our functional AND thoughtful gift ideas for chronic illness warriors.

For the new PICC patient:

From new PICC patients, chronic illness warriors on the go, and all the Friends in the Fight™ in between, we’ve got the perfect gifts for everyone this holiday season. Whether you are looking for a comforting present for a sick friend, someone who’s homebound, or a care package for a sick mom – pick one or more of our functional AND thoughtful gift ideas for chronic illness warriors.

Protection at its finest – gift everything they need to protect their PICC Line.

P.S.: PICCs can be hard to cover and protect, and they can not get wet! This pack will help with both and give your friend one less thing to worry about.

The PICCPerfect® PICC Line Cover protects and covers your PICC Line and brings dignity and comfort to your day! Perfect gift for new PICC Patient.

For the always on-the-go:

They don’t let anything stop them. Gift the tubie or chronic illness warrior in your life the gift of confidence, and ditch the IV pole.

Fluid Motion Backpack - Gift the tubie or chronic illness warrior in your life the gift of confidence, and ditch the IV pole.

For the organizational guru:

Color-coordinated medical supplies? Check. Give the gift of organization.

Peace of mind has never looked so chic. The Self Care Case is the perfect way to simplify your life and keep your wellness routine on track. It’s easy to customize, so you can add whatever essentials you need, and it’s compact enough to take with you wherever you go.

Self Care Case: Customizable Medical Organizer. Perfect Gift For Spoonies.

For the friends that still need space:

Still looking for protection from all kinds of viruses? No problem, we’ve got them (and you!) covered.

Stay safe this Holiday season with this stylish accessory. The Mighty Well Mask contours to your face for a perfect, comfortable fit, complete with an adjustable nose clip. Pick your favorite color today!

Mighty Well Mask by Mighty Well. Stay safe this Holiday season with this stylish accessory. The Mighty Well Mask contours to your face for a perfect, comfortable fit, complete with an adjustable nose clip.

Finally, something better than flowers or a fruit basket – these are gift ideas for chronic illness warriors – chosen by spoonies, for spoonies.

Living with illness and disability can be isolating. Thankfully, it doesn’t have to be. Sign up below to be in the know on our latest product and content releases, exclusive offers, and community events.

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Mighty Well Ambassador Jordyn shows off her Fluid Motion Backpack
Chronic IllnessFriends in the FightThe Undefeated

How I Pack My IV Infusion Backpack

by Jordyn C. November 11, 2022February 1, 2023
written by Jordyn C.

Hi! My name is Jordyn, and you may have seen me on Mighty Well’s social channels (here I am when I had a PICC Line.)  I’m 21 and suffer from POTs, Ehlers-Danlos Syndrome, gastroparesis, hypoglycemia, and MCAS. I document my medical journey on Social Media Via TikTok, Instagram, and YouTube! Read on to learn more about using an IV infusion backpack.

Ditching the IV pole

I currently use Mighty Well’s Fluid Motion Backpack, which has given me so much freedom. I am usually hooked up for my IV infusion between 8 to 12 hours daily through my Hickman line. A Hickman line is a central line catheter similar to a PICC line but placed on your chest. Having to stay connected to an IV pole all day is exhausting. However, when I use this bag, I can go about my day normally. 

Organized and accessible

The Fluid Motion Backpack has so much storage, so it’s very easy to keep everything clean and organized. I store many supplies and personal items in my bag, such as a medical folder for emergency information in case an accident arises, extra giving sets, dressings, blood pressure cuffs, and even my iPad! Being able to find something in a pinch is very helpful.  

My favorite compartment

The larger back medical compartment is my personal favorite. I can have my infusion pump on one side nice and secure, thanks to the velcro flaps! On the other side, I have saline flushes and heparin. About a handful of these items will fit in the larger needle-safe pocket, which is awesome because sometimes, you’ll need extra supplies in a pinch! 

In the two smaller mesh pockets at the top, I store emergency information cards (which I made on Canva, they are so cute!), an emergency glucose kit, extra alcohol swabs, disinfecting caps for the ends of my Hickman line, and Liquid IV! If you’ve been thinking about getting a Fluid Motion Backpack, I highly recommend it! 

If you’d love to see more about how I use my IV infusion backpack and other days in the life of chronic illness, check out my YouTube channel. Additionally, If you’re interested in purchasing your own, you can use my code JORDYN10 at checkout for 10% off! My bag is customized by Rescuing Me Boutique.

Living with illness and disability can be isolating. Thankfully, it doesn’t have to be. Sign up below to be in the know on our latest product and content releases, exclusive offers, and community events.

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Mighty Well co-founder Emily Levy shows off her deaccessed port catheter
Chronic IllnessMedical Devices

15 Things to Consider When Living With a Port

by Emily Levy November 8, 2022January 31, 2023
written by Emily Levy

In the fourth installment of our port series, I’ll share my personal tips, essential considerations, and a few complications to watch out for when living with a port. 

First: a few personal tips from me

  1. After your port is placed, you will get a manufacturer’s information card. Keep this in a safe place! This card has information about your port, so make sure to keep it on you at all times. I would store mine in my Self Care Case or wallet.
  2. There are many types of ports available. Know which kind you have. For example, I had a Medcomp Dignity port that was compatible with CT scans. I suggest asking for a port compatible with CT scans to reduce the potential of needle sticks.
  3. It may be helpful to have a medical alert bracelet. This can help in case of an emergency.
  4. The port can stay in your body as long as your caregiver believes it is necessary and no complications arise.
  5. When it is time for the port to come out, an additional procedure will be done to remove it. This will be similar to how the port was put in.
  6. The interventional radiologist who placed the port “owns” the device. If there are any complications, they are the first person that you should contact. 

Second: port access is different depending on your location

In our previous blog, I broke down feeling empowered by knowing how to access and flush your port on your own, but things may be slightly different in a hospital, clinic, or if you have a home health nurse come to you. 

  1. In a hospital or a clinic, your port will be taken care of and flushed by a nurse.
  2. If you are at home, a home health care or infusion nurse may give medicines and take care of the port. It may be possible for you to do this on your own if your nurse trains you and approves that you are able to take on this responsibility.
  3. You or a family member can receive special training and directions for giving medications and taking care of your port at home. 

In addition to receiving training from AVA-affiliated nurses, my home infusion nurse conducted two instructional sessions with my husband and me. She also empowered my husband to learn how to disconnect and remove my port after finishing my monthly IVIG treatment round. Most weeks, I would access my port on my own before my infusions.

Emily, with her emotional support dog, Olive, while receiving care while living with a port
Emily hanging out with Olive while receiving care for her port!

Finally: complications you SHOULD watch out for

It is vital to seek immediate care if you see the following:

  1. Your port does not flush, or you are unable to get a blood return
  2. New drainage or pus is coming from the incision
  3. A foul smell is coming from the incision site
  4. You develop swelling or increased redness at the incision site
  5. You develop increasing pain at the port site, which was the reason my port was removed
  6. You develop swelling or pain in the surrounding skin near the port (which also happened to me)

You may need to have your port removed if you develop a life-threatening fever that could be related to a central-line infection. Make sure to get help right away if you are not feeling well or getting worse.

What other topics do you want us to cover regarding ports? Leave a comment below or email us directly here. 

Living with illness and disability can be isolating. Thankfully, it doesn’t have to be. Sign up below to be in the know on our latest product and content releases, exclusive offers, and community events.

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Mighty Well co-founder Emily Levy shows off her deaccessed port catheter
Chronic IllnessMedical Devices

How To Access Your Implanted Port

by Emily Levy November 1, 2022January 31, 2023
written by Emily Levy

In the third installment of our port series, I will break down the most crucial part of having a port: correctly flushing and accessing your implanted port by yourself.

I believe patients should be empowered to learn how to access their ports if they are in a mental and/or physical state to do so. Special steps must be taken to master this skill, but I promise that accessing your implanted port on your own will help you to feel more ownership over your care routine. Nurses trained me at the Association for Vascular Access (AVA) using a training dummy to teach and practice palpating and accessing IVADs (Implanted Vascular Access Devices).

What I learned about port access:

  • Before the port is accessed, a numbing cream can be placed on the skin. This helps to numb the skin over the port site. For best practices, put a transparent dressing over the numbing cream and let it sit for one hour before accessing. Some hospitals also have instant skin-numbing spray as an option.  
  • A sterile technique is used to access the port to minimize the chances of infection.
  • The port is accessed with a specialized needle. My favorite port dressing change kit is the “Amanda Stabilizer” from BD. Only “non-coring” port needles should be used to access the port. Once it is accessed, a blood return should be checked. This is done by drawing back on the saline flush. This helps ensure the port is in the vein and the line is not clogged. You should be able to feel if the needle hits the port’s inner wall. Think of it as target practice!
  • If your caregiver believes your port should remain accessed, a clear transparent bandage will be placed over the needle site. The dressing and needle will need to be changed weekly or as directed by your caregiver. You can find all of my favorite IV supplies here.
  • If the port is left accessed, keep the bandage that covers the needle clean and dry. Please do not get wet, and follow the above instructions on how to shower when the port is accessed.
  • Always use a cap at the end of the line. My favorite options are Swab Caps and Curos Caps.
Mighty Well co-founder Emily Levy at the infusion clinic using her implanted port catheter for IV therapy
Emily, Mighty Well co-founder, receiving treatment through her port catheter!

Flushing your port:

To prevent your port from clogging, flushing is critical. Depending on your infusion type, a few factors determine how often the port is flushed:

  • If a constant infusion is running the port may not need to be flushed
  • If intermittent medicines are given, I would always flush between each medication using a method called S-A-S-H.
    • S: Saline
    • A: Antibiotic (of whatever your prescribed medication is)
    • S: Saline
    • H: Heparin (to lock the line and prevent clotting)
  • If the port is not being used, it is advised to flush it at least once per week

For Intermittent medicines, you will need to flush the port:

  • After each medication has been given
  • After blood has been drawn
  • As a part of routine maintenance

If you’ve been trained and instructed to flush your own port, follow your caregiver’s advice on how often, how much, and the type of flush to use. It is important to note that there are different units of heparin flushes. Additionally, tell your caregiver if you are allergic to heparin. You should mention if you are religiously opposed to heparin as it is derived from pork products. 

What other topics do you want us to cover regarding ports? Leave a comment below or email us directly here. 

Living with illness and disability can be isolating. Thankfully, it doesn’t have to be. Sign up below to be in the know on our latest product and content releases, exclusive offers, and community events.

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Chronic IllnessMedical Devices

What Happens After Port Surgery?

by Emily Levy October 26, 2022January 31, 2023
written by Emily Levy
Emily Levy shows her port catheter at the beach, after having several PICC Lines

In the second part of our port series, I am breaking down a little bit of what happens after port surgery.

A critical part of having a port is caring for the incision site after placement. My experience with getting a port implanted was far more painful than getting a PICC, primarily due to the larger incision and managing surgical glue and stitches. Additionally, an interventional radiologist (IR) doctor often does the surgery. In contrast, a PICC (or midline) can be placed at the bedside by a skilled clinician certified in PICC placement. 

Incision Site Care:

Important things to know about caring for your incision site:

  • In most cases, the site is closed with absorbable stitches under the skin that do not need to be removed. 
  • Small adhesive strips may be used to help keep the skin closed. Sometimes, no adhesive strips are used; instead, a special kind of surgical glue is used to keep the skin closed.
  • Make sure not to remove the adhesive strips used on the incision site. In most instances, they will fall off on their own.

My dressing was changed 24 hours after the procedure and then again a week later. Expect 7-10 days for the incision to heal. There will be a scar from the incision. I view my scar as a source of pride for my determination to improve my health.

Post-Surgery Care: 

Emily Levy of Mighty Well post surgery with a port catheter
Emily immediately after port surgery!

The hospital may advise that the incision site may be sore for 1-2 days. However, I noticed that my incision site was sore for two weeks after port surgery. To help with the pain, talk to your doctor about taking over-the-counter acetaminophen and follow the directions on the bottle.

A Few Things to Make Life Easier: 

  • I ensured I had easy on-and-off clothing options, like the Cocoon Cardigan. It was painful for me to put on clothing that went over my head during the healing process.
  • To shower, I recommend a handheld shower head or sponge bathing because it is critical that you do not get the site wet. 
  • If your port is placed in your arm, I recommend our Waterproof Shower Protector with full hand coverage.
  • Other options include using a waterproof dressing on the incision site for at least a week. 

It is essential to remember to never submerge the site under the water until the incision has fully healed. The transparent plastic waterproof dressing placed over the incision after the procedure should remain in place for seven days unless it becomes wet or dirty, in which case, it should be replaced as needed. 

Have any other products that made your life a little easier with a port? Email us directly here!

Living with illness and disability can be isolating. Thankfully, it doesn’t have to be. Sign up below to be in the know on our latest product and content releases, exclusive offers, and community events.

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Emily with her implanted port
Chronic IllnessMedical DevicesTreatment and Care

What is an Implanted Port? A Close Look at Central Venous Catheters & Central lines

by Emily Levy October 19, 2022January 31, 2023
written by Emily Levy

Over the last ten years, I’ve had three PICCs, an implanted port, and numerous peripheral IVs for various infusion therapies. One of the critical areas that allowed for more freedom in my day-to-day life of living with vascular access was transitioning from a PICC to an implanted chest port. Like me, many patients needing long-term IV therapy transition from a PICC (or midline) to a port. I successfully lived with an implanted chest port for frequent infusion therapy for nearly five years. 

In your discharge instructions, you should receive the information about ports that you need to know. In our latest series, I will explain the details to help you learn best care practices when making this transition, along with a few tips from my own experience.

What is a port catheter?

A port catheter is an implanted port that is a central line with a round hub under the skin. It is used for long-term IV (intravenous) access for:

  • Medication
  • Fluids
  • Liquid nutrition, such as TPN (total parenteral nutrition) or IV hydration
  • Blood samples

Where are ports placed?

The most common port placement is in the chest area, just below the collarbone. As seen in the photo above, I had mine in this location on my right side. Additionally, other potential port placement areas are: 

  • In the inner arms
  • abdomen or legs, although this is the least common

What are the parts that make up a port?

A port has two main parts that make up this medical device:

  • The Reservoir: This is the round and small raised area under your skin
    • This “Hub” is where the needle is inserted, often referred to as “being accessed,” to give medicines or draw blood
  • The Catheter: The catheter is a long tube that extends from the reservoir. This is placed into a large vein.
    • The medication that is inserted into the reservoir goes into the catheter and then into the vein.

What other topics do you want us to cover regarding ports? Leave a comment below or email us directly here. 

Living with illness and disability can be isolating. Thankfully, it doesn’t have to be. Sign up below to be in the know on our latest product and content releases, exclusive offers, and community events.

Disclaimer: This is not medical advice, do not treat it as such. You must not rely on the information in this platform as an alternative to medical advice from your doctor or another professional healthcare provider. If you have any specific questions about any medical matter, you should consult your doctor or another professional healthcare provider. You should seek immediate medical attention if you think you may be suffering from any medical condition. You should never delay seeking medical advice, disregard medical advice or discontinue medical treatment because of information on this platform.

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Ari, Mighty Well's Content and Community Manager overlooking a mountain.
Chronic IllnessFriends in the FightRelationships and SupportTreatment and Care

Knowing When To Take a Step Back When Living With Chronic Illness

by Ari Paulsen October 12, 2022February 1, 2023
written by Ari Paulsen

When I tell people I’m sick, they usually think I mean something short-term and contagious like the flu or a stomach bug. If I say I have a chronic illness, they picture conditions like IBS, a bad back, or chronic migraines. 

The actual reality is all this and more. Yes, and. 

“I’m sick”

I have IBS-like GI symptoms that range from mild diarrhea to agonizing intestinal pain and bloody stool. Migraines can hit me out of nowhere, obstructing my vision, garbling my speech, and sometimes lingering for more than a week. I get flu-like aches, chills, and fatigue that can last for months. Sometimes the fatigue is so intense that I can’t get out of bed, literally crawling on the floor to go to the bathroom. I get orthostatic intolerance, which means I can’t stand up without feeling like puking and/or passing out. 

My connective tissues are corrupted, so all of my joints (including my spine) pop in and out of place causing pain, instability, and a heightened fight or flight response from a brain forced to be ever on alert. My mast cells, the white blood cells responsible for things like asthma and anaphylaxis, and hives, are over-active. They are triggered by things like the sun, marshmallows, and chemicals you didn’t know were in your home or workplace. 

And those are just the big ones. That doesn’t include the symptoms that are too small for me to report in typical doctor visits, like the tingling, numbness, and pain in my extremities caused by neuropathy and spinal instability. Or the dry eyes and painful mouth and throat sores caused by my autoimmune comorbidity. Or the post-exertional malaise that can make it impossible to exercise. 

Sometimes it boggles my mind to try to recount everything that I mean by “I’m sick.” It’s like a cartoon character I saw once as a kid. He was hit by a bus but somehow kept going. Then a fridge fell out a window and crushed him. After, he was blown up by TNT explosives. Then stung by a swarm of bees, trampled by horses, caught in a fire, and pushed off a cliff. Somehow, he kept going.

And I do. I keep going. Honestly, I’m terrified to stop. I’m terrified that our society will label me lazy or weak or a burden or unworthy. I’m worried that I will label myself these things, or my parents, or my partner. But I know that sometimes, my body knows when it’s time to stop, and I need to listen.

Ever-changing chronic illness

Another thing people don’t get about complex chronic illness is that it can be simultaneously ever-changing and numbingly constant. Having diarrhea one day isn’t a big deal. Having diarrhea for fifteen years is a nightmare. But as tough as the relentless consistency can be, I much prefer it to the fickle nature of this beast. You never really know what the day will bring. Sure, I grew accustomed over the years to intestinal pain. But would I also have a migraine? Would I have any energy or be a slug on the floor? Would I be able to eat, or would every food I tried set off my mast cells? 

In Meghan O’Rourke’s incredible book The Invisible Kingdom, she uses the analogy of loss of limb. If you were to lose a leg, you would certainly face challenges, but you would wake up every day knowing that you’d need to adapt to life without a leg. With complex chronic illness, it is not this simple. Who knows which of the hundred symptoms my body will pick off the menu? Or will I be completely fine and spend the day wondering if it was all as bad as I thought because, look at me, I’m fine? There’s no way to communicate ahead of time with employers or friends. It’s hard to get them to even believe, sometimes, when each day can look so different.

Trying to get ahead of it all

In the last several years, I’ve gotten to a place where I at least know what all the options are, so when they pop up throughout the day I can say “I see you, I know what is causing you, and perhaps I have a trick that can help.” I live in fear of the days when a new symptom shows up and I have to go back to not knowing, to seeing specialists and rounds of testing and the trauma that gets dredged up.

It happened, this month. I started working full-time for the first time since my worst crash and subsequent diagnoses. I was excited – I’ve been feeling pretty stable for a year or two – but also nervous that this would cause a flare. What I didn’t expect was for it to cause a new symptom. I started feeling nauseous and bloated. Then pain in parts of my abdomen that were not my usual. Then eating became a battle and my belly swelled until I looked several months pregnant. It felt as if my stomach was paralyzed, that it simply had stopped emptying. 

This is not an abstraction, but rather a very specific fear. EDS can cause gastroparesis, which is paralysis of the stomach. I’ve had a doctor suggest that some of my GI issues were intestinal paresis, but this was different. Then I started feeling dizzy and nauseous whenever on my back, something that can be caused by arterial compression conditions like MALS, another serious complication that can arise from EDS.

And thus came the panic. 

It’s hard not to fear what’s ahead

Another thing about chronic illness is that it is made bearable by forming community. Sick friends are amazing and spoonie communities can be literal lifesavers. Yet being as well connected to the chronic illness community as I am also means that I know too much. I know people with my conditions who have been bed-bound for years, use feeding tubes for nutrition, and are slowly dying. I have seen the downward spiral time and again – a mast cell flare makes eating a challenge and causes worsened joint laxity and PEM, rendering exercise impossible, which then causes POTS to worsen, which increases the brain’s stress response, which worsens all symptoms and causes additional complications… it spirals on and on until you’re too unstable to even receive treatments.

I’ve seen it happen. It’s hard not to fear that I will be next. But the fear makes everything so much worse. 

So, I reloaded my meditation app, got some extra babysitters, increased my therapy sessions, and tried really hard to be zen while ordering tests for MALS, gastroparesis, and other motility issues. I decided that the most likely cause was autonomic since my POTS was also out of control, so I doubled down on salt and water and exercised when I could. Things seemed to clear up a bit. I felt my stomach empty one day and was hit with a need to be in the bathroom forever, as well as a righteous hunger.

After days of eating ravenously and feeling like I was going to puke if I didn’t constantly have something in my mouth, I felt it shift again. My stomach was getting tighter, my belly was swelling, and it was getting harder and harder to get food down, despite the hunger.

I’m in the grey area. I am not so sick that I have severe gastroparesis or MALS. I can mostly get by, go to work, and be somewhat of a parent (with help). But some days it’s too much. Every time I stand up I have to choke down the vomit and will my vision and control of my limbs to return. My despair and fear creep back up. What if I can’t work? What if I’m just not cut out for having a career? Or for being a working mother? What if I have to spend another day feeling this miserable and nauseous, hungry but unable to eat? What if I’m not sick enough to test positive for the big ones like gastroparesis but too sick to be ok without treatment/intervention?

Ari, chronic illness warrior, spending time with her daughter.
Ari spending some time with her baby

What’s next for me

What I keep reminding myself is that just as possible is the upward spiral. I’ve seen it happen – resting and self-care calm the nervous system, allowing mast cells to chill enough to tolerate a few more foods. This new nutrition (and joy!) gives enough of a boost to introduce some new movement or activity, if not exercise. This movement tightens up the joints and further soothes the nervous system… over time, each decrease in symptoms allows for new treatments, activities, and energy/emotional boosts. The dominoes fall into place until everything stabilizes.

I’ve seen it happen both ways. I feel like I’m on the brink of a spiral. I know that stress and fear can tip it downward, while rest and self-love can spin things up. It is hard, in this world, to accept that resting is the most important job sometimes. But for myself, my family, my friends, my daughter, the students I hope to teach in the future, and the adventures I hope to enjoy, I need, so desperately, to let myself rest.

And so, while I love my work here so dearly, I will be taking some time off to heal. I can’t express enough the importance of role models with chronic illness like Emily, who have openly taken this time for themselves, to help me feel powerful, rather than weak, in my decision. I am so grateful for this community and for the time I have spent with you. And I can’t wait to come back, once I have given my body time for its upward spiral.

Living with illness and disability can be isolating. Thankfully, it doesn’t have to be. Sign up below to be in the know on our latest product and content releases, exclusive offers, and community events.

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3 Tips for Eating With EDS & Co
Chronic IllnessTreatment and Care

3 Tips for Eating With EDS & Co

by Ariela Paulsen September 6, 2022September 6, 2022
written by Ariela Paulsen

Today we will be addressing the challenges that hypermobile patients can face around food, as part of our series on EDS & Co. As a refresher, EDS & Co refers to a cluster of chronic illnesses that have gained awareness over the last several years as being rarely diagnosed, rather than rare.  These conditions include Ehlers-Danlos Syndrome (EDS) or Hypermobility Spectrum Disorder (HSD), as well as comorbidities such as Postural Orthostatic Tachycardia Syndrome (POTS), Mast Cell Activation Syndrome (MCAS), Myalgic Encephalomyelitis (ME), and a variety of autoimmune conditions and other complications.

Learn more about EDS & Co here.

GI complications are one of the most common symptoms for patients with EDS & Co.  This is unsurprising, considering the GI tract is made up of connective tissue, POTS and other forms of dysautonomia disrupt the “rest and digest” function of the nervous system, and both MCAS and autoimmune disorders can be triggered by food.  Other comorbidities of EDS/HSD, such as gastroparesis and MALS, can also cause severe vomiting.

Do you get nutrition via TPN / feeding tubes, or are considering alternative nutrition?  Visit our TPN/Feeding Tube Resources and Guides here!

Unfortunately, the solution here is far from one-size-fits-all.  One patient’s cure-all foods can be another’s worst nightmare.  There are some general tips, however, that can get you started down your own unique path towards GI health.  

**Note: We are not doctors and these tips are not intended as medical advice.

1. cut out the shame

Food can carry so much emotion!  It is central to socializing, culture, and so much more. Many of us also carry shame or discomfort around our body image and what we eat.  Added to this is the significant shame we are taught to feel when talking about GI symptoms like vomiting and pooping.  If you have diarrhea, constipation, gas, reflux… adding shame will only increase the agony of your experience.  Try to find people with whom you can speak openly about food, body image, and GI symptoms, even if it takes the form of jokes!  Keeping silent about these issues can add to feelings of isolation and make our bodies feel even worse.

2. make eating easier

Have you ever skipped a meal or gone for an unhealthy snack just because you didn’t have the energy to cook?  Cooking with chronic illness is really hard.  There are ways to make it easier, though!  Check out our 5 Cooking Hacks here and tips for on-the-go meals here.

3. find your triggers

Some GI issues are unrelated to what you eat – cutting out sugar won’t fix gastroparesis or a stretched-out esophageal sphincter.  For some, however, trigger avoidance can make a tremendous difference.  Pay attention (and write down, if possible) what you eat and drink for a couple of weeks.  Did there seem to be any correlation between what went in, what came out, and how you felt in between?  Common triggers are:

  • gluten 
  • dairy
  • sugar 
  • caffeine 
  • alcohol 
  • highly-processed foods
  • leftovers 

Try cutting these out to see if symptoms improve.  Some other diets to consider – 

  • Avoiding fatty, spicy, and acidic foods can help with GERD
  • Anti-inflammatory diets can help with autoimmune and mast cell diseases
  • Low-histamine (or anti-histamine) diets are helpful for MCAS and general allergies
  • Low FODMAP diets can help with overall gut distress
  • Elimination diets are tricky, but can help you find your unique triggers

**With any new diet, but especially elimination, consult your doctor or dietitian to be sure you are getting enough nutrients.

The good news is that eating certain foods can also improve your health!  For example,

  • Eating heavy foods like red meat and whole grains slows down digestion, which can reduce diarrhea and intestinal pain
  • Eating smaller meals and snacking throughout the day (especially complex carbs, fats, and protein) can keep your blood sugar steady and reduce POTS symptoms
  • Adding salt to your diet can decrease POTS symptoms by increasing blood volume (consult a doctor first, to be sure you don’t have hypertension!)
  • Chamomile can reduce the general anxiety that often comes with chronic pain and illness
  • Foods high in DAO – such as fresh herbs and berries – can reduce mast cell activation
  • Anti-inflammatory foods can decrease pain

More information and recipes that you may find helpful:

  • Is Food Making You Sick?
  • Recipes that can hide a lot of salt here and here
  • The Low Histamine Chef
  • Anti-Inflammatory Kitchen
  • Mighty Well Recipes: comfort foods, pesto, frozen desserts, oat bars, cucumber dill salad
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Alchemizing Pain into Power
Chronic IllnessGeneral WellnessTreatment and Care

Ketamine Therapy Saved My Life

by Emily Levy September 1, 2022September 6, 2022
written by Emily Levy

In my last blog, I shared about my journey this past year and one of the treatments that have helped me heal – ozone therapy.  Another treatment, Ketamine Assisted Psychotherapy (KAP), has made a tremendous difference in my mental health and journey to overcome chronic pain.  The purpose of sharing my healing journey is to raise awareness about Ketamine Assisted Psychotherapy and overcome the stigma associated with this clinically-proven method of treating mental health and chronic pain.

emerging science

Although ketamine has been used for decades by anesthesiologists in surgery, its use for the treatment of depression, PTSD, and chronic pain is fairly new.  Much is still unknown about how exactly it works, but in the last two decades, researchers have determined that ketamine – when used medically – rewires the brain by reforming synapses that were lost due to chronic stress or trauma.  This effect can be felt within hours, as opposed to traditional SSRIs which can take weeks to begin working. Not only this but while SSRIs only work when actively in your system (thus causing rebounds if you try to go off of medication), ketamine’s effects may persist longer term.  The brain does not rely on daily medication but rather is stimulated to repair and continue functioning after a brief period of ketamine treatment.  Ketamine has even effectively alleviated previously treatment-resistant depression.  

Another fascinating aspect of Ketamine Assisted Psychotherapy is that the new synapses formed make the brain more adaptable.  This is called neuroplasticity.  If you’ve ever tried to change an unhealthy pattern or thought process, you may have found yourself stuck, wondering how to retrain a brain that is set in its ways.  Ketamine treatments stimulate the brain to form new neural pathways, so working on positive thinking and self-love during the time of treatments may encourage those specific parts of the brain to grow, making it easier to create lasting change.  It is for this reason that doing some form of therapy during ketamine treatment can greatly increase the long-term benefits.  

my journey with KAP

Like many others in the Mighty Well community, I was prescribed antidepressants at the start my treatment for chronic illness. In January of 2020, I sought out an alternative antidepressant therapy as a way to get off of traditional SSRIs.  The medications I had been taking since I was 17 didn’t seem to be working as well as they did when I was younger.  My experience with SSRIs suggested that they were masking, rather than treating, my underlying challenges. 

 I was ready to get to the root of my struggles with depression, medical PTSD, and chronic pain.  Despite my concern about staying on antidepressants long-term, I still needed an improved mental health approach.  I had researched using ketamine for treatment-resistant depression and managing chronic pain. As a result of this research, I decided to incorporate it into my own treatment regimen.

There are four different ways to administer ketamine:

  • Sublingual lozenges
  • Esketamine, an FDA-approved nasal spray
  • Intramuscular (IM) injection
  • IV infusion

Sublingual lozenges were recommended as the gentlest method of treatment.   Some insurance may cover ketamine treatments for chronic pain, and there is currently a push to make it more widely covered for mental health.  I underwent eight rounds of Ketamine Assisted Psychotherapy and was able to get off of my SSRI with the supervision of a medical professional and integration coaching. 

According to Leia Friedwoman M.S., a psychedelic integration facilitator, “Psychedelic integration is the process of distilling down our insights and experiences from a journey into something that we can incorporate in our day-to-day lives.  Ketamine Assisted Psychotherapy can be healing all on its own, but many folks find that it is helpful to have support outside of the session for processing and exploring the images, emotions, and sensations that came up during the trip.” Although there are some holistic ketamine centers that offer preparation, ketamine sessions, and integration support, there are a number of clinics approaching ketamine therapy from a purely medical standpoint. These clinics do not provide integration support, and some do not even offer to have a therapist or support person present with the patient during their ketamine treatment. It’s important that any person considering ketamine treatment spend time to figure out the sort of support and container that is most supportive and appropriate to them. 

I chose to complete a program called mindbloom, an at-home ketamine therapy program with telehealth.  I don’t recommend this for everyone, but it was the right fit for me because of the accessibility, price point, and convenience of completing treatment in my own home.  If you are looking for a different approach, there is now an abundance of clinics and approaches available.  

Some are more traditional medical settings that can be very hospital-like, while others are more meditative or spa-like.  Many people accessing these clinics are seeking a way to get off of SSRIs as well, to treat long-term or treatment-resistant depression, and/or PTSD.  I have also heard from folks in the chronic illness community who are using ketamine at a much lower dose to treat chronic pain, such as starting with 25mg and working up to 100mg.  Friedwoman notes, “This dose is low enough that it will likely not cause any mind-altering experience, although this all depends on a person’s weight and the way it is administered.”

the ketamine experience

Though not all consider ketamine to be a psychedelic, it is included in the emerging field of legal psychedelic therapy. Technically, it is considered a dissociative medicine.  For me, undergoing a guided ketamine therapy session was like watching a movie while in a meditative state.  I felt very calm and was able to revisit very difficult experiences in my life from a loving perspective.  It was not scary at all and, in fact, was very enjoyable. I only felt the mind-altering effects of the medicine for about 45-60 minutes.  

While ketamine poses an exciting and interesting opportunity for many, it does not come without  risks and important considerations to make. Although this hasn’t been seen as widely in clinical use, there is a very real risk of ketamine addiction, so people need to be mindful and work with a medical team or experienced professional.  The Mighty Well team recognizes the elitism and privilege required to access medical treatment; at the same time, this treatment is not something one should attempt alone.  The current hype about psychedelic medicines such as ketamine can also lead to expectations, which may result in disappointment when people have their own unique first experience. “Ketamine healing is not necessarily a linear path; for some people, the medicine may take them in a different direction than they expected or wanted to go. Part of the journey is bringing curiosity and compassion in when you process the places the medicine has been taking you,” says Friedwoman. 

For me, eight rounds were enough to achieve breakthrough mental health results and taper off of my SSRIs and nerve pain medication. It gives me great pleasure to share that my mental health is in amazing shape today, and I am proud to say that ketamine therapy helped me save my own life!

Finally, there is a stigma around ketamine being a “club drug” but it is FDA approved and has been used for over 50 years with surgeries.  Many patients wonder about the legality of ketamine. While abuse of this controlled substance is illegal, medical use (when prescribed and monitored by a doctor) is legal.  Because it is safe (albeit with a potential for psychological addiction, due to the dissociative quality of the experience) and becoming more mainstream, ketamine is not difficult to access as a medical treatment.  If you are curious about it, ask your doctor if it might be a good fit for you.

Would you like Mighty Well to cover more about emerging psychedelic therapy for mental health and chronic pain?  Let us know in the comments, or email us at listenup@mightywell.com!

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