I have pulmonary fibrosis with my scleroderma. I speak to the parts of my body like they are separate entities to remind them I know they are plotting against me and I will keep throwing a wrench in their maniacal plans to kill me. I love my lungs for so many reasons, but they are part of this plot, so I am going to keep them submissive by exercising them. My lungs used to complain, but now they are in compliance.
It used to be really hard to exercise. Walking across the room took effort. Then, I discovered yoga and I learned deep breathing to get those lungs expanding. Once my problem - sarcoidosis- was identified as the culprit, things got even better. After years of difficulty breathing, I was finally diagnosed with sarcoidosis. The symptoms were mistaken for scleroderma, because difficulty breathing is a common symptom. But persistence paid off, I read my own radiologists reports and brought them to doctors until one finally ordered a PET scan and thoracic biopsy to find that sarcoidosis granulomas were making my lump nodes swell. This restricted movement of my lungs so they could expand, thus creating difficulty breathing. Now I am on the right medication to keep those granulmas in check. Stress does make those granulomas swell, so I also have sedatives handy. How can I face what I need to do in any situation if I have trouble breathing? Don't judge, it works. I have to be able to breathe or defeats the purpose- of everything.
Now, back to the pulmonary fibrosis: That's courtesy of scleroderma. My lungs are scarring, but I am keeping my lungs working by making them work. I have a use it or loose it mentality. Of course there are no studies I can site right now, but fighting a disease is 10% physical and 90% mental. Or 10% mental and 90% physical- again, who cares, our mind can be the most powerful part of our bodies. If you tell yourself your dying, that's true whether we have a positive attitude or not. We're all going to die eventually. Some of us just have an idea how. And even that's inaccurate because I could fall down a flight of stairs and break my skull and none of the treatment and meds I have been taking could help me with that. So, can we really control what life throws at us? For our purposes and lack of time we have for a philosophy class this minute, the short answer is, no. But we can control how we face them.
So, how am I facing the ongoing progression of my lungs scarring into fibrosis? I am working to sculpt my ass into perfection. That's right, I am taking the focus off whats going on with my lungs so I can wear a bikini and look damn fine. And I don't mean unhealthy looking either, I want a fine ass I can be proud of. The side effect: I am eating healthier- no, I'm not starving myself. I had some yummy pineapple upside down cake, soda and what may have been the best steak tacos in my life, last sunday. Nothing super complicated, I am just committed to doing at least 30 minutes of cardio fitness every day.
Back in 2005, I started with deep breathing. I even wrote a post about how deep breathing is exercise. This is an updated version. I think about what is going on with my body and no matter what I do, until there is a cure, my scleroderma and sarcoidosis will continue to progress. My condition is stable with medication, but I know I need to do more than medication. Not just for my symptoms, but for my own sanity. |
| Everyone needs a goal. It's more fun to think about working on my figure, than keeping lung tissue moving to keep it from hardening. Photo by @regretfulmom. |
Some of you may not know this, but I have a tendency to be a control freak. When I was first diagnosed, I tried to control acceptance of my symptoms by simply ignoring them. I continued to drink and occasionally smoke. Then, once I quit those, used my energy to point out what I perceived to be everyone else's problem. Finally, I faced myself, accepted what was happening and continue to use that acceptance to stay alive, active and sane. (Determination of my sanity is entirely subjective by my own observations.)
Then came a time when I took a look at what my body was doing and for lack of a better term, freaked the f**k out. Then I remembered the most important thing I learned from The Hitchhiker's Guide to The Galaxy and stopped panicking. Reading the book Illusions, by Richard Bach has helped tremendously as well. My point is, it's all about perception.
So, the family friendly term for exercising is: I do it for my health. The truth is, I'm a bit vain and I'm using that to motivate me to exercise. I want a booty I can bounce a quarter off of (see, vanity isn't all bad, it helps me breathe.) The "secondary" benefit of my lungs working, keeping that fibrosis from hardening my lungs and being strong for the fight is the icing on the cake. Right now, I just want to look good on the beach. Because that's where I want to be: Living in the now.
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