Invisible Workload of Asthma

 

Most of us know the basics of managing asthma - taking your controller or reliever inhalers morning and night. 

And using an albuterol inhaler or a nebulizer for a breathing treatment when you are sick or having an asthma attack.   

But what about the invisible workload in managing a disease?  

Making appointments 

There is a new system at my doctor's office for being able to schedule an online appointment, but the system doesn't actually work. I made an appointment online, but as the time got closer, I didn't get a reminder or link to check in. 

So I'm stuck on hold waiting to talk to a receptionist and schedule an appointment.

Why is this a lot of work? Because all three of my kids and I had allergy shots twice a week to help desensitize our bodies to everything we are allergic to. 

We all had such large and hot welts after injections that we couldn't increase the serum. So we  would be stuck at the same dose for weeks. Which meant our allergy shot series took 5 years for each of us. 

And going twice a week for allergy shots is time consuming. I burned through a lot of sick time by leaving work early to pick the kids up from school and take them to shots. Then I needed to try to remember to make an appointment while I was there for the next shots 3 days later. 

I also had a son that was getting monthly injections of a biologic to control his severe asthma.  So I had to schedule that around work meetings so I could pick him up from school and drive him to the clinic.  

Ordering refills 

Since there are 4 of us in my family with asthma, we are often calling in refills for our inhalers or vials of albuterol for the nebulizer. 

Two of us also have food allergies, so we need to make sure we have epinephrine auto injectors that haven't expired.   

We have used different pharmacies over the years but we wanted to support small business, so we went to a locally owned pharmacy. But - they didn't offer refill reminders, and I always forget to check the counter on my inhaler. After a few days of feeling like my lungs were twitchy, I would look at the inhaler only to find out the counter was on zero! 

The local pharmacy wasn't getting reimbursed properly for my medicines, so they suggested I go to a national chain pharmacy. So that was more work switching prescriptions over (and updating each doctor that I have a new pharmacy.)

Dealing with insurance 

Has insurance denied a medication or procedure?  

There were times when insurance would randomly stop covering an inhaler that worked well for us and make us switch to another inhaler they was less expensive. Or we would have to "fail" on multiple inhalers that were less expensive to finally get them to cover a more expensive or higher dose inhaler that worked better for us.  

We also had to get approval for a very expensive biologic for my son. Since we couldn't afford the co-pay, I had to find a foundation that would offer help with co-pays. Once we found a foundation that would help us, we had to reapply every year and fill out piles of paperwork.  

Emotional load 

For me, worrying is a constant when you have kids with chronic health conditions. They are starting a cold - are they going to end up with pneumonia again? There is another wildfire nearby - we need to stay inside and turn on the air purifiers so my son doesn't end up in the ICU again. 

What other invisible projects do you deal with when managing your chronic condition? 

Share in the comments below! 

Hugs, 

Andrea