September 22, 2009 is the day our world changed drastically. My oldest son, Michael, was diagnosed with Type 1 Diabetes that day. It was two days before his 13th birthday and we had taken him to the doctor with a stomach ache.
Our doctor originally diagnosed him with a virus but when I casually mentioned how thirsty he’d been lately she decided to draw some blood. Ten minutes later she walked back into the office, told us to pack a bag and head to our local children’s hospital because his blood sugars were over 500. We were lucky, children often end up in the intensive care unit before they are properly diagnosed. We were in the hospital a day and a half before they sent us home to our new lifestyle.
Diabetes is a chronic illness. It’s frustrating, it’s scary, and it’s crazy expensive. Here are a few things we’ve learned along the journey that might be able to help you. Our journey is Type 1 Diabetes but I think these tips could help people regardless of the type of chronic health challenge they face.
Know Your Insurance Plan
Diabetes is a ridiculously expensive disease. Fortunately we’ve always had health insurance through my job. I worked for a small company though that changed health insurance companies frequently in order to keep our insurance costs as affordable as possible. It seemed like every year I was faced with learning what our new plan covered and what it didn’t.
This is a vital piece of advice. Your first step when faced with a health crisis (and actually you should do this as soon as you enroll in your health plan) is to learn how your plan works.
What is your deductible? How about your out of pocket cost? Is your doctor covered under your plan? How about your specialists? Is there a different co-pay if you see a specialist? How much will your prescriptions cost? Does your insurance company cover the medicine your doctor wants you to take? That probably seems like a silly question but believe me, it’s not. Insurance companies seem to think they know better than your doctor sometimes.
Find a Great Healthcare team
Chronic illnesses generally mean another set of specialized doctors that you’ll be seeing. Michael is supposed to see his endocrinologist quarterly. It’s important to find a doctor that listens to your concerns and is available to answer any questions you have. It’s a lot easier to ask the difficult questions when you’re comfortable with your physician.
I’ve learned that it’s just as important to like your specialists’ office staff. Michael generally alternates appointments between his endocrinologist and a nurse practitioner in the office. The nurse practitioner’s are fabulous in this office. They also have nutritionists, diabetes specialists, and a psychiatrist on staff.
Shop around for your prescriptions too. Your healthcare provider might have a service where you can compare your prescription prices at various pharmacies. Don’t assume they are all going to have the same price.
Join a support group
A friend’s son was diagnosed a few years after Michael. She started an online support group and that’s been invaluable. It’s nice to be able to bounce ideas off other parents that are going through similar experiences/trials. We can share tips, suggestions, horror stories, successes, recommendations, etc. Sometimes it’s nice to just have a group of sympathetic ears/shoulders when you’ve been up all night with kids with high or low blood sugars.
Find Your Tribe
Our family and friends have been fabulous over the years. Neighbors and friends and family have helped numerous times over the years, whether it was helping to get my other son to school/practices if Michael had doctor’s appointments or helping out with providing healthy food choices at functions, to lending an ear when I was exhausted and needed someone to vent to about what a horrible disease this was and the unfairness that my son had to deal with it. You have to take care of yourself as a caregiver as well.
Dealing with a chronic illness, whether it’s your own or your child’s or another relative’s is stressful on so many levels. Take it one day at a time. Make sure you’re finding time to deal with the emotional aspect of it as well. Don’t be afraid to reach out for help if you become overwhelmed.