Don’t let that old person in. That is the saying in our Interstitial Lung Disease (ILD) support groups. Despite the significant limitations on our bodies and strength, the hardest battle is often finding the resolve to push through on the rough days when we are so completely depleted. Many struggle with leaving the house or meeting up with friends because of the fear of illness and its implications on our long-term health, as well as chronic mourning for a lifestyle lost.

It’s difficult sometimes to reconcile the information given to you by such a variety of doctors. When I met with my Rheumatologist in January and we discussed long term goals, he stated it was his hope that I would be able to get off of my supplemental oxygen for a time, the idea of which is admittedly very alluring. But when I met my Pulmonologist last week and I mentioned the same, she made it clear that is extremely unlikely.

Though my pulmonologist likes having all of the test results available to her before my appointment, getting my hands on the full results so that I can more fully understand them is a different undertaking. Miraculously, my pulmonologist is fabulous about writing thorough letters to my PCP about my diagnosis, test results, medications and treatment plan. If I have questions about anything we discussed or my notes from our appointments, I often find the answers clearly laid out in these multi-page letters.

For those of you following along at home, I was unable to complete my original Pulmonary Function Test (PFT) in December, but thanks to a very encouraging and skilled nurse coaching me through the uncomfortable process in early February I was finally able to finish all tests for a fuller picture of my lung function. This PFT measures: lung capacity, obstructions, absorption of O2 and expelling of CO2.

Let us start with the good news- my tests show no obstructions to my airway inhibiting my breathing. I consider that a victory and one less battle to fight. My newest PFT does show that my Vital lung Capacity is 1.26 liters (33%), and my body is only expelling 26% of the CO2 in my lungs, which is contributing to my chronic hypoxia. This has helped me understand both the pulmonary fellow’s analysis that my lung capacity is “severely limited” and the pulmonologist’s belief that I will be unable to get off my oxygen.

My pulmonologist is pleased that I have been traveling. She and her team acknowledge frequently the importance of mental health and resilience in the fight against the creeping negative thoughts and depression that often accompany an ILD Diagnosis. She expressed pleasure at both the activity of travel and the joy it brings me. She plans to present my case at an ILD Conference in March, and I wish I could be a fly on that wall to learn from a room full of people with opinions on my case.

My next objective, between pulmonary rehab and the impending spring weather, is to lose the prednisone weight. Weight loss is important because BMI is a contributing factor in fitness for lung transplant, but it’s also easier on your lungs if they aren’t lifting the extra poundage to breathe. Just another reason to keep traveling because not only did I lose 4lbs on my recent trip because of a clean diet, but I was also far more physically active than I ever manage at home through a variety of excursions and navigation of the cruise ship’s decks.

For the time being I am willing to admit that my body is tired but my spirit is strong. I plan to continue getting out when I am able and resting when my body calls for it. The past month has shown me that the warm weather makes a HUGE difference in my comfort and mobility. One breath of that brisk, cold air and my lungs cease up. It can take two or more hours to stop coughing and get my voice back, let alone get comfortable in my own skin. Those conditions make it difficult to get moving, a necessary step in losing weight. As I increase the warmth in my life, I aim to increase the physical activity as well and build up my strength.

Major thanks to all of the friends and faire family who made it out for our impromptu gathering, and to my Aunt Lori for making these gorgeous sunflower cupcakes for the event. Her baked goods are outstanding and she’s been spoiling me as of late. Friends near and far – please mark your calendars for March 21 when we will gather again at Drunken Smithy in Lebanon, PA.

For anyone feeling drawn to support my medical and living expenses, my friends set up a GoFundMe as I continue to wait for determination on Disability. These funds are also supporting my Bucket List as I am able and allowing me to see the world. Thank you for your kindness.