3 Years After Diagnosis: Lessons I've Learned

Posted by Amy Gleason

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Jun 25, 2013 8:12:00 AM

Three years ago today, we first heard the word Dermatomyositis.
I still remember trying to figure out how to say it. Where did the emphasis go? How do you spell it? What the hell is it? I still remember the panic and sheer terror I felt not knowing what it meant when the doctor told us she had this disease we had never heard of with tears in her eyes.
“I am so sorry,” she said.
What could it be? I remember watching what I asked because I didn’t want to scare my sweet 11 year-old daughter any more than she was by the demeanor of the doctor.  I remember frantically trying to text my parents, my husband, and my doctor friends to see if anyone knew anything about it.
I remember getting the MRI and having to go to a different MRI place across town to get it done that day, and I remember Morgan freaking out over having her blood drawn. I couldn’t understand what to do about Morgan’s plans for camp as she was scheduled to leave to go out of state to camp in 2 days. Would she be ok on the new steroid prescription? Should she not go?
I remember reading everything I could get my hands on. I went through every page that Google had to offer. I found a blog of a dad who wrote about his daughter, and I read the entire thing – every single entry for the years he blogged. I found Cure JM and thankfully Shari Shobe was kind enough to reach out to me and talk by phone. She was amazing and gave me such great info that I felt somewhat better.
Throughout the last 3 years, we have learned a lot. We have grown and changed in good ways and not-so-good ways. We have learned the healthcare system in ways that I wish we hadn’t. We have become masters at figuring out how to navigate, and we still struggle with how to manage all the appointments, all the data, all the frustration, all the should do’s and the shouldn’t do’s, and how to have a life that is not all medical.
morgan photo
Morgan has started a new sport of horseback riding and has truly found a new part of herself. This sport also gave her a group of friends who are fantastically down to earth and understanding. It has given her confidence and activities she can do with friends. I am so thankful for this.
We have added some meds and reduced some meds. She is still getting monthly IVIG infusions, monthly Solumedrol infusions, and weekly methotrexate infusions. She still takes 7 other oral meds for a total of 17 pills a day. But, she only missed 39 days of school this year – down from 55 last year. She has ridden horses most days.
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. He/she only sees you periodically and 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 the data
  3. If the insurance company doesn’t pay claims that 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, use change.org to get your story out like I had to this year.
  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), scholorships 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 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. 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 ok. 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 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.
  11. Ok, one more. Whatever happens, keep putting one shoe in front of the other. Some good days will keep you going through the bad ones. When they don’t see #9.

Off we go into our fourth year of the world of Juvenile Dermatomyositis. It has impacted me so much that I am using my clinical and healthcare information technology education and experience to build tools to help families like mine bridge the gaps in healthcare.
With CareSync, my family now has help keeping health data current so that we can share it when we need to, and we have a common calendar and task list to work from for our health.
If you also struggle, please share ideas that have worked for you, and please check out CareSync to see if it can also help you and your family.

Thanks so much to everyone who has supported us during our journey!

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