Monthly Dose > Volume 18 | June 2022

MY JOURNEY WITH MYASTHENIA GRAVIS

What I learned about how to support someone in need

This article has been adapted with permission from the MG Hope blog by Rebekah Dorr.

“Let me know if you need anything!” I’ve heard this well-meant phrase more times than I can count. Many times I did need something, but felt too awkward or ashamed to ask for it.

Myasthenia Gravis came into my life like a whirlwind, its symptoms quickly escalating from severe fatigue to respiratory weakness in a matter of ten days. My family and I found ourselves in the emergency room four different times within a two week period. The diagnostic process involved two spinal taps just 48 hours apart. The second spinal tap left me paralyzed from the waist down due to several rare complications. I was sent home a week later after being kicked out with a security escort, still paralyzed, after we insisted something was very wrong.

I spent the next six weeks in a wheelchair at home or confined to a bed due to the paralysis and my increasing weakness.

Concerned friends, family and neighbors dropped by and brought meals or called to check on us. Each guest offered the same invitation to call if we needed anything. But we found ourselves unsure how to ask, the needs were so great. One evening however, a friend of the family dropped by unexpectedly after a long day at work and he had with him a special gift. He had taken the time to build me a ramp so I could get down the step from my front door in the wheelchair.

After he was done installing it and I got to test out my new gift of freedom, he sat with us and visited. He looked at me and said something I will never forget: “Rebekah, that ramp out there? It is temporary. I made it that way on purpose because I believe that you’re going to walk again. And I want you to hang on to that.” He spoke with the grace and love of a father, and I was overcome with emotion. He saw a need we didn’t know how to articulate and he showed up without us ever picking up the phone. It has been seven years, and like he promised, the ramp was needed for just six weeks. But it taught me a crucial lesson that I have never forgotten. We have opportunities in our lives to walk with our fellow human beings throughout many ups and downs. Some of us choose to stick around only for the good moments and others still simply don’t know how to respond to the bad. But what we do in these situations changes lives.

Over the years, I have heard countless iterations of the invitation to call or reach out if I need something. While I always appreciate the heart that is behind this, I find myself thinking back to the unexpected gift of a ramp and how a friend took the time to quietly walk with me and show up in the middle of the messiness. Sit with me during treatments, take me to the doctor, help me weed my flower beds or cut my grass, bring meals and paper plates, come sit and talk with me and forgive my messy home, call me once a week and tell me you’re thinking of me.

Yes, it takes time and effort to truly help someone who is hurting, but it isn’t complicated. We just need you to show up, no matter what you are able to offer, because it matters far more than you could ever imagine.

I believe we have to learn how to walk with our fellow human beings in this life, and stay the course when things get hard. It is easy to say you are available to someone, but it can be hard for us to take you up on that. We don’t want to burden you, and sometimes, the truth is we just don’t know what to say. We just need someone to show up and let us know that we still matter.

Walking with us doesn’t have to be complicated, it just takes a choice.

TRAVELING WITH A CHRONIC CONDITION

Do I need travel insurance?

Traveling when dealing with a chronic health condition can be challenging. You may wonder what happens if you have to cancel last-minute due to a health concern? Or what if you become sick while abroad? Many people consider purchasing travel insurance to safeguard against these types of issues. However, it can be tricky to understand how to get coverage and which policy offers the best protection when you have a pre-existing condition.

Here’s what Inspire members had to say about travel insurance for people with chronic conditions.

I definitely use travel insurance…One of the companies I used was TERRIBLE. The rest have been great. Double-check reviews on line, and definitely stay away from the one(s) that have more complaints than kudos.
-HighFlyer

Whatever travel insurance you purchase, look very closely at the fine print. When we traveled this summer, we too looked at insurance. Good thing we looked at the fine print because each one had a clause that excluded my husband.
-Marivi90804

I just got back from a wonderful cruise. Luckily my health was great during my trip… but I sure looked into insurance before my trip. I found that the cruise insurance would not cover my pre-existing condition. So basically it would have been worthless for me to spend the money on insurance. I just decided that I had to take the chance. I did find out that as long as one of the people on the reservation stayed the same, you could substitute people. Also, I have discovered that most oncology teams will work around your trips and plan any treatments around your vacation. They know that we need to LIVE and enjoy life whenever possible.
-Timarief

I bought travel insurance for my last trip. Come to find out I wasn’t able to fly back with my ticket, I had to take a train. Guess what? Travel insurance didn’t help me one bit because of my pre-existing condition. Should have read the fine, fine print. Lost almost $300. Dang, I felt taken.
-WantVictory

I’ve tried online without any luck, haven’t even got a quote because I’m declaring my cancer and my past heart problems. Today I was able to get a quote, told the insurance company all my details and the booker said yes, we’ll insure you. I was all excited until he told me the price. I nearly fell off my chair in shock.
-Belfastboy

Last summer my sister and I traveled to Ghana, Africa. We are both stage 4 MBC. We had travel insurance for both of us. It was an expensive trip and I didn’t want to take a chance that one of us wasn’t feeling well enough to go. I planned our trip through a travel agent. I was upfront with her that we were both stage 4 cancer. There was no problem getting the insurance. The travel agent actually thought it was a wonderful idea with our medical situation so we didn’t lose all the money invested in the trip should we get ill. I believe the cost was 10% of the ticket price…
-kpretzel

My husband and I just got back 2 weeks ago from a Caribbean cruise (bucket list item). I didn’t take out travel insurance, but our travel agent had said that there would not have been a problem had I wanted to. We are now heading to Switzerland in April to visit family (another bucket list item) and this time will definitely take out trip insurance per our travel agent. My suggestion is to work with a good agent!
-Katie-Sue

I would recommend going to squaremouth.com and looking at their insurance. It compares all of the ones that you chose. I just looked at our coverage and there is no pre-existing clause. We paid $382 for a 21 day trip for 4 to Africa – we are taking our 2 twelve year old grand-daughters on safari. You can compare the policies and if you have medical insurance and the travel insurance will be a secondary insurance then it is much cheaper.
-Breezy1

There are three things to consider 1) a refund if you can’t go 2) emergency medical expenses while you are there and 3) a medical flight to get you home if you are too ill to fly commercial. There is a fourth issue but that involves transporting remains and we won’t go there. ; )
-R

My wife and I both have long-term pre-existing conditions. We travel internationally every year. We always buy TravelGuard insurance with the pre-existing condition rider. In fact, the rider is “cancel for any reason.” We used it once in 2014 to cancel a month-long trip overseas. My wife had a sudden illness compounded by pneumonia and was in the hospital. We followed TravelGuard’s cancelation documentation requirements to the letter and received total reimbursement for the trip – $19K.
-Explorer08

A JetBlue agent suggested to me to book my flight as “refundable” at the higher price to secure my seat, then switch to “non-refundable” closer to the trip. That way I did not pay for flight insurance. JetBlue does this for free and there is a time limit before the flight date to switch, but whichever airline you choose, call them first and ask about this option to see if it is of benefit to you.
-musikaren

*Member posts have been lightly edited for length and clarity. The opinions expressed above are from members and do not necessarily reflect the views of Inspire.

MEN'S HEALTH MONTH

Diet and lifestyle changes for men

As you age, your body’s nutrition and caloric needs change. You start to lose muscle and may notice the numbers on the scale creeping up. An estimated 3 out of 4 men in America are overweight or obese. Carrying extra weight can be dangerous to one’s health. It contributes to heart disease and cancers — the two top killers of males in the United States. 

Fortunately, it’s never too late to adopt a healthy lifestyle and make changes to improve your well-being. These tips can help.

Read the full article.

TAKE OUR MIGRAINE SURVEY

Do you suffer from migraines?

Do you suffer from migraines? Tell us about your experience with migraines by participating in our survey.

SPOTLIGHT COMMUNITY

EOS Connections Eosinophilic Disorders Support Community

This month we’re featuring our EOS Connections community, where nearly 16,000 patients, families, friends, and caregivers come together for support and inspiration. So what are eosinophils?

Eosinophils [ee·ow·si·nuh·fils] are a type of white blood cell. They play an important part in the immune system. Eosinophils help us fight infections. When a person has elevated numbers of eosinophils, without a known cause, he or she may have an eosinophil-associated disease. 

Eosinophil-associated diseases are rare, but they are an emerging healthcare problem around the globe. The most common of these diseases are eosinophilic gastrointestinal disorders (EGIDs), affecting the gastrointestinal tract. Eosinophil-associated diseases are chronic and require long-term management. The symptoms may be debilitating and often lead to missed time at school and work, and may greatly impact a patient’s quality of life.

Inspire members shared what it’s like to be diagnosed and live with an Eosinophil-associated disease.

“I’m 25 and just got diagnosed with EoE. I’ve had symptoms since I was about 9/10. So this diagnosis is quite literally everything for me. But going undiagnosed for so long it created a plethora of other issues.
bkleeman

“I am the mother of a 17 year old daughter with EGE. She was dx’d at 12 and it’s definitely been a roller coaster since. She had a severe flare up 2 years ago that caused her to miss almost 3 weeks of school. After that calmed down, things progressed as normal. Mild flare ups, some bad ones, but nothing that lasted long. We hit a point last year where she was doing amazing. We thought maybe we were over the hump and started reducing medication. This past July, her EGE is back with a vengeance.”
MissShelle76

“Prior to the start of my eosinophilic asthma symptoms I had been a serious runner and had completed numerous marathons. Asthma was never something I struggled with. My symptoms began in May 2017. I was 49 years old at the time and had run a marathon just a month earlier. I went to different doctors over several months and it wasn’t until December 2017 when I sought treatment at the Mayo Clinic that I was diagnosed with EOA.”
tctisell

“I was diagnosed 5-6 years ago with HES and EGID. I took steroids off schedule for almost two years reducing my dose gradually until I got off of them. Although the side effects of budesonide are minimal compared to others I didn’t want to be on them long term. I did a drug trial at UNC for almost two years. That eliminated all my eosinophils and I felt good. Then because of the inconvenience of the trial and covid I stopped and did an elimination diet…a full elimination not just the 6-8 food one. I did that for a month and found many if not most of my trigger foods.”

“My son is two, and has been vomiting and exhibiting EoE Symptoms since he was about 6 or 7 months old. He was just diagnosed two months ago after having an endoscopy. Lately I feel so down and discouraged from trying to feed a food avoidant and constantly sick toddler. I feel exhausted by constantly having to essentially “trick” my child to eat, and so sad when he isn’t able to keep food down.”
parkerposie24

Do you have EOS or know someone who does? Find information and support in our EOS Connections community

TAKE OUR EOE SURVEY

Do you suffer from eosinophilic esophagitis (EoE)?

Do you or a loved one suffer from eosinophilic esophagitis (EoE)? Tell us your experience by taking our survey. 

SCLERODERMA AWARENESS MONTH

Featured Partner: National Scleroderma Foundation

In honor of Scleroderma Awareness Month, Inspire recognizes our partner, the National Scleroderma Foundation, which provides much-needed resources and support for people living with scleroderma, caregivers, family, and friends. The National Scleroderma Foundation’s mission is to advance medical research, promote disease awareness, and provide support and education to people with scleroderma.

What is Scleroderma?

Scleroderma, or systemic sclerosis, is a chronic connective tissue disease generally classified as an autoimmune disease.
The word “scleroderma” comes from the Greek word “sclero”, meaning hard, and the Latin word “derma,” meaning skin.

Hardening of the skin is one of the most visible manifestations of the disease. The disease varies from individual-to-individual. Scleroderma is not contagious, infectious, cancerous, or malignant.

How You Can Help

The National Scleroderma Foundation’s vision is to be a relentless force in finding a cure and improving the lives of people affected by scleroderma. June is Scleroderma Awareness Month. Their theme is #knowscleroderma. Throughout the month, you can help raise awareness by sharing National Scleroderma Foundation’s posts on your social channels.

https://Facebook.com/sclerodermaus 
https://twitter.com/scleroderma 
https://instagram.com/sclerodermaus 
https://linkedin.com/company/nationalsclerodermafoundation

Are you looking to help the scleroderma community? Stepping Out to Cure Scleroderma walks are great opportunities to get involved and help advance the mission of the National Scleroderma Foundation. Local chapters host Stepping Out walks throughout the year across the country. To learn more and find a walk near you, visit: Stepping Out to Cure Scleroderma – National Scleroderma Foundation.

Join the conversation

If you or a loved one has scleroderma, find support from others who understand what you’re going through in Inspire’s National Scleroderma Foundation Community

“Success is not final; failure is not fatal; it is the courage to continue that counts.”

– Winston Churchill

Inspire’s Mission

Inspire is the vital community that supports millions of patients and caregivers, advances understanding of the health journey, and partners with the medical community to accelerate life-change discoveries.

This is a message from Inspire for members of our community ● Copyright 2022 Inspire ● Inspire 3101 Wilson Boulevard, Suite 200 Arlington, VA 22201