Juggling COPD and Other Conditions

I live with chronic obstructive pulmonary disease (COPD), but I also have a host of other conditions. Here’s how I manage them all.

It’s not uncommon for those of us with COPD to also have other illnesses.

Anyone who’s read my articles or seen my interactions as an ambassador in the Bezzy COPD forums is aware that I’m living with a lot more than the lung condition.

I sometimes joke that chronic illnesses are like bunny rabbits — they just keep multiplying!

While my family is quick to accuse me of revealing TMI (too much information), I’ve received enough feedback from others trying to juggle multiple conditions to make me feel like telling my story isn’t only therapeutic but helpful to many.

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My chronic conditions

I could probably fill a whole page with my autoimmune and connective tissue illnesses and the conditions or complications they have caused, but let’s start with the major ones: dermatomyositis, undifferentiated connective tissue disease (UCTD), lupus, and Ehlers-Danlos syndrome.

There’s a lot of overlap of symptoms in those disorders, including rashes, fatigue, and muscle and joint pain. Sometimes it’s hard to tell what is causing a flare.

In addition to a large cabinet full of medication, I am on two infusions:

• Intravenous Immunoglobulin (IVIG): IVIG is a treatment for people like me who have antibody deficiencies.
• Truxima: Truxima is a Rituxan (rituximab) biosimilar used for inflammation related to several conditions.

Those, as well as most of my other prescriptions, cover the overlap in my conditions. I can use pain medications for all of my conditions, whether it’s the type that targets muscles, nerves, or other areas of the body.

Even though I experience a crossover in symptoms and medications, there’s a lot of separation between them and my lung problems. My COPD and interstitial lung disease have their own set of characteristics and treatment plans.

What my conditions have in common

As far as symptoms are concerned, the only thing that really affects me from every condition is fatigue. It can certainly feel worse when there’s more than one thing causing it.

I’ve described having trouble getting out of bed every day and being unable to turn over when I’m having a bad day. It’s similar to fatigue.

For instance, I might be feeling really tired and need a nap from my dermatomyositis, but if that and my COPD are both flaring, I may need to spend the whole day in bed because I’m just too tired to do anything.

Confusion about symptoms

One symptom that does confuse me is chest pain. It means something very different depending on the condition. For example, feeling pain when breathing can happen with connective tissues and COPD.

I ask myself these questions when I’m trying to figure out what’s going on:

• Am I having trouble breathing? It’s more likely a lung issue.
• Does it hurt when I press on my chest? Chances are it’s probably a muscle or inflammatory problem. It could even be a broken rib.
• Do I feel better with over-the-counter pain relievers? Tylenol or Aleve will not help you if the problem is your breathing.

Call your doctor or get care immediately if you have any doubt about your symptoms.

Doctors I can count on

I’m very lucky that my rheumatologist and pulmonologist, who are my favorites, are the two doctors I approach the most. They consult with each other seamlessly, and that has made this journey so much easier for me.

One time, we were addressing my lungs and my autoimmune health. They agreed that Rituxan might help me. It was challenging to get my health insurance to approve it. Still, my doctors advocated for me and were able to get the biosimilar for Rituxan approved for me.

They were right. It didn’t cure anything, but it has slowed the progression of everything. By removing a large amount of inflammation, it helped me feel a little better with my COPD.

Don’t ever underestimate the importance of having at least one doctor you can talk with who is willing to consult with other doctors. It’s ultimately up to you to do the best for your health, but you need medical professionals in your corner.

Keep on going

One thing that is true is no matter how many conditions you have, it’s best to keep moving as much as possible. I say this with a broken foot, a spine degenerating by the minute, and an ankle about to go under reconstruction.

This is on top of everything else I physically live with.

I still do leg lifts on my recliner, raise my knee on a chair, work with bands in bed, and do arm circles from my wheelchair.

“Move it or lose it,” is a valid phrase. Make sure you also don’t forget your mental health. Multiple illnesses can be tough to live with, but to quote another phrase, you just have to “take it one day at a time.”