Living Breathless
Comments 2

I love a challenge

This is me on a July 4th camping trip directly disregarding doctor's orders and not staying out of the sun ... again. Sunscreen usually works, but you have to actually put it on. But a Buff works in a pinch to keep my skin from breaking out any more. My teenage cousins kept saying I looked like I was in the wild west until I threatened to get a six-shooter and teach them to dance.

This is me on a July 4th camping trip directly disregarding doctor’s orders and not staying out of the sun … again. Sunscreen usually works, but you have to actually put it on. But a Buff works in a pinch to keep my skin from breaking out any more. My teenage cousins kept saying I looked like I was in the wild west until I threatened to get a six-shooter and teach them to dance.

I focus so much on Sjӧgren’s because that’s the source of all my problems, that I forget there’s another diagnosis in the list: Interstitial lung disease. Simply put, it means inflammation in the lungs. This inflammation is what makes it difficult for me to breathe. As the inflammation clears up, my breathing improves. The only caveat to this is that the inflammation was so bad before my treatment started that there is scarring left behind as I heal. (Let that be a lesson to you other stubborn people out there: Waiting several months after you notice you are having trouble breathing is NOT a good idea, no matter how you can justify it to yourself.)

I learned last week that my lung function is up almost 20 percent from where it was in January: I’m up to 62 percent from 46 percent. And while that is awesome – and more than Dr. M. expected – it wasn’t enough to get that oxygen prescription lowered. I actually got a little bit of chastisement for not wearing it into the office. I mean, my oxygen level did drop down to about 83 before I got to his office, so he may have had a point. But just a little one. After all, I took the steps.

When I started asking questions about getting off oxygen, he steadfastly held on to the opinion that I may never get off oxygen. His favorite thing to say is, “You have to remember you didn’t do this to yourself and there was nothing you could do to prevent it.”

Check and double check, although I would argue that had I gone to the doctor and it was diagnosed sooner, my lungs would never have gotten so bad to begin with. So I could have helped it.

This time he added another little statement: “You have to remember this is a chronic condition.”

I keep approaching this like something that just needs a little more time and then I can ignore it completely and go about my life, but that isn’t really the case. It’s a condition that has to be constantly monitored and managed, to protect my lungs especially.

But if you think about it, that’s not much different from other chronic conditions, like diabetes or high blood pressure. They all require medication, monitoring and sacrifices. I can live with these things, no problem. People live with chronic conditions every day; it’s really not a big deal. But he also said I shouldn’t expect much more improvement.

Challenge accepted, Dr. M.

In January, he said the same thing – and I still got better. I’m not sure if he’s trying to manage expectations or if he really thinks I won’t make any more improvement, but I know I will. Between now and my next appointment with him in October, I plan to improve my breathing. I can’t control my lung function – I can only get as far as the scarring will allow me. But I can control Sjӧgren’s and the inflammation it causes, and I can control other health factors. With diet and exercise I can both decrease the load my cardiovascular and pulmonary systems carry and strengthen those systems. Who knows? Maybe I’ll pick up yoga to help me learn to focus on breathing.

What I do know is I plan to shock his socks off in October. And when I summit Forester Pass on the Pacific Crest Trail – elevation 13,153 feet –  he will be the first call I make.

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This entry was posted in: Living Breathless

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I’m something you don’t see every day: A person under 80 who walks around with oxygen everywhere she goes. I have Sjogren's Syndrome, an autoimmune disorder which, with the help of my stubborn refusal to go to the doctor, caused some pretty deep damage to my lungs. My lack of breath slowed me down for a while, but I'm back to adventuring - just with Gus, my little oxygen tank, in tow. This year's goal is to complete the 52 Hike Challenge and get myself into a healthier state of being. Join me on my quest to become oxygen free!

2 Comments

  1. Awesome blog altogether! Love your sense of humor! I lead hikes for a women’s hiking group called Trail Dames…just shared this post on their Facebook page. Looking forward to reading more!! 🙂

    • Thank you so much! I’m glad you enjoyed it. I was looking at your site last night and was really enjoying it! You’ve posted about several places on my To Hike List.

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