A Break from Chronic Illness?

Nov 22

I returned home from another Mayo Clinic visit feeling discouraged and even more tired than usual. The good news is my heart has no active signs of sarcoidosis, however my liver, lung, and overall inflammation counts were worse than six months ago.

The amount of tests and expert consultations were draining. Especially when the conditions I’ve already been diagnosed with; Type 1 diabetes, colitis, and sarcoidosis do not provide much insight to my current symptoms.

Thankfully, my cardiology team continues to believe there is another condition in the mix, and has yet to blame anything on diabetes or sarcoid. They continue to ask tough questions and have set me up with the best opinions available.

I’m a proactive self-advocate. I respect the expertise of the medical community, however I know my body and how it reacts to treatments better than anyone.

The challenge with all of this? How to keep moving. This week I’ve felt like giving up on my current medical treatments and just see how things go. I’d love a break. Time to remove all my medical gear and be left alone.

While that’s not a reality I’ll ever experience, there are a number of activities I employ to assist my mental and physical health:

Exercise; taking what my body will offer. If this is a 5 minute run rather than 50, I’ll take it.
Reading an entertaining book that does not involve health or a serious subject.
Talking to my wife and allowing her to help. This is a work in progress, as I often feel like I need to do more, not less.
Counseling; I go every week, not matter how good or bad I feel. It has been a great gift.
Mindfulness practice: yoga and meditation; or simply a quiet walk.
EverGreen Adventures: our nonprofit has provided the only effective medicine to date as striving to help the chronic illness community and caregivers has meant a great deal.