6 Years After Diagnosis: Lessons Learned

Posted by Amy Gleason

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Jun 30, 2016 5:24:51 PM


Six years ago this month, we first heard the word Dermatomyositis. When the doctor told us my daughter Morgan, who was 11 years old at the time, had it, I didn’t even know how to say the word, let alone know what the diagnosis meant. But our family quickly got a crash course in understanding something no one should have to understand.

Over the years, we’ve learned a lot. We’ve struggled with how to manage all the appointments, health data, frustrations, should do’s and shouldn’t do’s.


We’ve become masters at figuring out how to navigate both the good and bad of the healthcare system. And we’ve had the good fortune of being part of CareSync, borne out of many of our experiences in the hopes of helping others ease some of the struggles associated with facing and managing chronic conditions.

Now, as Morgan heads off to college in the fall, we have also been learning the tools available for college students to try to set her up for success.

Lessons We Have Learned


1. Don’t be afraid to speak up.

You know more about what is typical for you than the doctor does. Doctors only see you periodically. You live with your symptoms, side effects, good days and bad. They only know what it is like if you paint the picture for them.

2. Doctors like data.

Don’t tell them that you THINK your pain was worse. Chart it. Don’t tell them that you THINK the med caused side effects. Document it. They are much more responsive when you have data to share with them.

3. If the insurance company doesn’t pay claims you think they should have, document everything.

Send all correspondence by certified mail. Open all mail from the insurance company the day it comes because they use tricks like very short times to respond. If all else fails, usechange.org to get your story out (like I had to do in 2013).


4. Your life changes when you have a chronic disease or someone in your family does.

Yes, you will always wonder what life would have been like if it hadn’t happened. Yes, you can’t do some things you could before. Yes, it is unfair and a pain in the butt. However, over time, you learn that there are also some silver linings if you pay attention. Things you wouldn’t have tried before. People you wouldn’t have met before. Understanding of what others around you might be going through. Victories, even if they aren’t the big Cure, over some battles you face.

5. Get the high deductible health plan.

Nobody wants to talk about this, but if you are going to have a lot of medical bills, you are most likely better off picking the high deductible plan and hitting the max out of pocket. You need to look at the difference that you will pay monthly for the copay plan and see what that total is for 12 months. Is it close to the out of pocket max? Would you be likely to go over the difference? If so, pick the high deductible plan. If not, pick the copay plan.

6. Look for resources if you need help.

There are a lot of organizations that can help with flights to see specialists who focus only on your specific disease (like American Airlines), places to stay (Ronald McDonald House), medication programs (many by pharma and some not), scholarships to conferences as a patient, and many more.


7. DEFINITELY find a patient group.

You will learn more in 2 weeks of being part of an active patient group than you will from multiple doctors visits, reading all the material you can find, and talking to any other experts you can find. These people live with or care for someone who lives with the disease every day. They will BLOW YOU AWAY with their knowledge, ideas, and “me too”s. Sometimes, that “me too” will be just what keeps you from going over the edge mentally. I certainly don't know how I would have survived without Cure JM!

8. I am the worst to talk about this one, but realize that you most likely can’t do it all.

It is okay. If you miss an appointment or two, most likely it isn’t the end of the world. Try to prioritize and always call as soon as you can to reschedule. NEVER just miss it without rescheduling. Keep a calendar that your family can see and make sure they are armed with the information needed to make them confident enough to take a child or other loved one to the doctor. Yes, you might know more and be able to go deeper, but sometimes you just can’t do it all. Ask for help.


9. Get a glass of wine, dinner, or something else with friends at least once a month.

Don’t talk about health stuff. Engage about other things in life. Socialization is important. Don’t forget life, even if it seems like yours is chaos.

10. Don’t be afraid to ask a school or your doctor for resources.

We have learned that schools have programs to provide accommodations for things like note takers if you have arthritis in the finger joints or first floor dorm rooms for people who have trouble with the stairs. You can’t get them if you don’t ask!

11. Transitioning from pediatric to adult care is kind of scary.

Start early. Teach your child how to prepare for a visit. Practice asking them the questions that the doctor will ask on the way and let them answer if possible. Explain how insurance and copays work. The more they know in their teen years, the more prepared they’ll be that first day in college (I hope! I will update more as we are more experienced).

12. Look for programs that can help coordinate care like CareSync.

You might be lucky enough to have a concierge doctor, but if not, services like CareSync can take a lot of the stress off of you and your family by organizing your health information so that it can be shared, making appointments for you, and just helping you remember what should be done. I love my CareSync nurses!


13. Don’t expect others who aren’t in your shoes to understand.

You most likely didn’t understand before you went through it (or at least I didn’t for sure!). Sometimes it seems like they don’t try to get it, and some don’t. But, I have decided that it is better to believe that they want to, but are just not equipped with the skills.

14. Okay, one more. Whatever happens, keep putting one foot in front of the other.

Some good days will keep you going through the bad ones. When they don’t, see #9.

CareSync build tools that bridge the gaps in healthcare. With CareSync’s care coordination services, your health data is kept current so it can be shared when you need it, all your doctor’s have the information they need to work together on your behalf, your questions get answered day or night by on-call Health Assistants, and an easy-to-follow Care Plan is created to fit your individual needs and actively move you toward better health. Talk to your doctor about CareSync.

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