1114 posts by patientslikeme

“Everyone needs a “Me too!” moment” – Member Shannon on exposing her truth

Posted July 17th, 2017 by

“With every part of me that becomes less than what it used to be, a different part of me usually becomes more than what it used to be. In fact, maybe that’s the point, but it doesn’t make it any less difficult.”

Shannon (Sna2164) is a wife, mother, animal lover and writer, living in southern California. She was officially diagnosed with multiple sclerosis at 27 years old, with three children under the age of four. In a recent interview, Shannon told us about her diagnosis, starting a blog and her journey to peace and contentment with MS.

Check out her story about exposing her truth and helping others who feel misunderstood.

Searching for answers

While others can go through years of suffering while waiting for a diagnosis, Shannon’s experience was comparatively quick. It started six months after her youngest daughter was born. She began having terrible pain in her right eye, combined with temporary loss of vision in that same eye anytime she went from darkness to light or vice versa. In her quest for an explanation and solution, she used eye glasses she didn’t need and took antibiotics for sinus infections she didn’t have.

A few months into trying to solve the mystery of her eye pain, she rapidly began experiencing other symptoms including numbness, tingling, and Lhermitte’s sign (a burst of pain that runs down the back, arms and legs when the neck moves). As if slowly going numb from the feet up by inches every day wasn’t enough to alert her primary care doctor that she needed a specialist, one night she got up out of bed in the middle of the night to go to the bathroom and hit the floor. She tried again, and hit the floor again. This temporary paralysis subsided within minutes, but it alarmed her primary care physician enough to insist she see a neurologist right away.

Shannon saw a neurologist for the first time in August 2004 and was officially diagnosed with multiple sclerosis (MS) in October 2004 after an MRI of her brain and cervical spine revealed multiple lesions. She was 27 with three small children and had just been diagnosed with a condition she knew nothing about.

Finding strength through words

Starting her blog, diaryofadisease in 2015 was both a terrifying and freeing decision that Shannon says was the best decision she ever made. She’d been writing about her experience living with disease over the years and wanted to find a way to share it with others.

“I asked myself if creating a blog was really something I wanted to do, would I have regrets about not doing it, simply out of fear, in twenty years? And the answer was yes, so I forced myself to do it despite my long list of reasons I felt afraid and inadequate.”

Many months later, her dream became a reality. While there were many times she wanted to give up, her son stepped in and helped complete her vision for the site.

“He also took the photo on the home page which was anything but candid. I told him I felt like I was standing still in a world that was passing me by, and since he already was quite the photographer, he knew just how to capture my feelings in this photo that speaks volumes.”

When she released her blog, even those close to her knew very little about her struggles living with disease because it was, and still is, very challenging to talk about. Despite her fears, she knew it was important to be honest about her health and experience with MS. She also felt like there wasn’t enough information online that spoke to the heart about living with disease.

“There are volumes of information about MS and disease that speak to the brain about the scientific ‘ins and outs’, but nothing on how darn hard it is to suffer the symptoms. Everyone needs validation for their feelings, everyone needs a ‘Me too!’ moment.”

Although Shannon started her “diary of a disease” as a way to cope, she hopes that it’ll help others who feel equally as lost and misunderstood in their journey of disease.

“One of the greatest rewards is that in surrendering my pride and exposing my truth, my burden is much lighter, and the people who love me in my life have a means to really understand me in a way I could never communicate verbally.”

 

Adjusting to a new normal

Shannon’s new normal with MS looks and feels very different than what she thought normal meant before. As she moves forward, she’s learning that there are many definitions of normal and that it is okay to have limitations, to live against the norm, to change the way she does things, admit her weaknesses and slow down.

Shannon’s goal is acceptance and contentment. It isn’t always easy. Since living with MS means that each day can look different, the journey to acceptance and contentment needs to happen not once, but again and again. The principle she attempts to follow daily is:

“My value is in who I am and not in what I do, because I have spent too many years drowning in the ‘do better try harder’ mindset, and true peace isn’t found there, and I think that’s what most of us long for.”

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Wheels up! Tips for traveling with a health condition

Posted July 14th, 2017 by

Got summer travel plans? For many, hitting the road with a health condition can take some extra planning, so we’ve gathered tips and tricks – from the PatientsLikeMe forums and beyond – to help you prepare for smooth sailing, start to finish.

Traveling with a chronic illness

Before you go

Bring a buddy. Traveling with someone – whether a spouse, niece or friend – can be very helpful when you have extra luggage, medical equipment or a tricky health regimen to stick to during your trip. Traveling by train? Amtrak offers discounts of 15% or more for people with disabilities and their companion.

 

“If possible, travel with a relative or friend. When making hotel reservations, remember that smaller hotels require less walking. Request a room on the first floor or near an elevator. Request a room with a grab bar in the shower. If traveling by airplane, request a straight-through flight and an aisle seat.” – Member with Parkinson’s disease

 

Set reminders. Write up your daily treatment plan and ask your travel mate(s) to help you stick with it. Set smartphone reminders, too, so you don’t forget your usual “to-do’s” when you’re away from home.

Talk with your doctor.

  • Ask about any recent symptom flare-ups, motion sickness or sun-safety concerns, changing time zones (and adjusting your medication schedule), and any other questions you have.
  • Check the CDC’s list of symptoms that might mean postponing your trip.
  • Make sure you’re well stocked with prescription meds, plus extra in case of delays – you may need to request a “vacation override” from your doctor or pharmacist.
  • Get a letter from your doctor (on letterhead) stating your condition, treatment regimen and medications. Some items, such as oxygen tanks and needles, may require a doctor’s note to carry onto flights.

Check your insurance coverage. Call your health insurance provider to ask about coverage where you’re traveling. If you’re traveling far or out of the U.S., it may be worth getting travel health insurance – although some members note that they’ve had trouble getting covered for a “pre-existing condition.” Look into it as early as possible.

Also, research trip insurance – a broad policy may protect you if you need to change plans for any reason, health-related or not. 

 

“Buy travel insurance within 24 hours of purchasing your tickets so your pre-existing conditions can be covered. Read the fine print. I’ve had a lot of good experience with this website: www.insuremytrip.com.” – Member with MS

 

Make special accommodations. Check with the TSA and your airline or other travel provider(s) to learn about available help, special accommodations and planning ahead for smooth security screenings. Read up on your rights as an airline passenger with disabilities.

“Be aware of services like Curb to Curb Wheelchair service (don’t be too shy… the airport IS huge, and the name of the game is to spend your energy WHEN YOU GET TO your destination, NOT just getting there…!) The service will take you to your plane (right down ton the tarmac if that’s what it takes!) as well as back down to the luggage claim and taxi, etc.” – Member with MS

Traveling with an illness

Pack like a pro. Write down a packing list, thinking of your typical daily routine and the items you use from morning to night. (Hint: Don’t throw away your list! You can use it again for your return trip or down the road.)

Rolling your clothes can help you neatly squeeze more into your suitcase. If you have things that you can’t pack until the last minute (medications), stick a reminder note on the door you’ll exit through for your trip. Important: Pack your medications in your carry-on, in case your checked luggage gets lost. Also, keep your ID, doctor’s note and emergency contact list on you at all times – in English and the language of your destination.

 

“I went to Europe this summer and if I had to do it again I would write a note in Italian (or any language for the places I was visiting) which explained why I needed to use disabled services. I had a hard time getting access to elevators in the Colosseum.” – Member with MS

 

During your trip

Make (loose) plans. Remind your travel mates that you might need to take pit stops and time to rest.

“While traveling, meet the needs of your illness. For me, that means trying to get enough sleep (and knowing the signs of not having enough sleep!!) and making sure I get some alone time every couple of days.” – Member with major depressive disorder

Eat (pretty) well. If you follow a specific eating plan because of your condition or if you’re sensitive to dietary changes in general, you may not want to stray too far from your typical menu. Also: hydrate, hydrate, hydrate.

“Make sure you eat wholesome food while traveling. Try to keep your normal diet as much as possible. Traveling is tough on the body! Good luck and enjoy what you can. That is what makes living worthwhile, even if we all had to re-invent ourselves after our diagnosis.” – Member with fibromyalgia

Call ahead for help at tourist sites. Some museums and tourist spots have wheelchairs visitors can use free of charge – try calling ahead to confirm and see if you need a reservation.

After you’re back

Take it easy. If time allows, fit in some downtime after your trip (such as an extra day or two off work), especially if you’ve done a lot of physical activity, changed time zones or feel a cold or bug coming on. Unpacking alone can take a lot of time and energy. But hopefully it was well worth the journey!

Have any travel advice to share? Add a comment here or join the conversation in the forum!

 

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