This started out as a response to fellow blogger Eric Mayer. It's morphed into a post. He asked questions about my concentrators and the loss of power and the vendors who supply oxygen devices.

I've answered these questions and more.

If you get bored with my IPF information, scroll down to the last five paragraphs. It's the best part. *smiling*


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Both my oxygen concentrators operate only with electricity. The E Tanks are pressurized - they are the ones I used when I lost power for 8 hours the other night.

I recently learned that most oxygen suppliers won't deliver concentrators to patients that require more than 10 liters. Actually, I have two 10 liter concentrators spliced together to provide up to 20 liters. What I've been missing is the proper tubing. At first I was nice-nice about these needs, but when I discovered I was a *dying nobody*, I became enraged. The oxygen vendor suggested I be put on a nebulizer with morphine. Disgraceful! That's treatment used for end-of-life. Gah.

I still played nice-nice but with stern words. Good heavens!These people determine the quality of my life! Finally, the proper tubing was installed, but another essential connecting piece is still required so my concentrators can provide up to 20 liters.

IPF is a disease that's fairly *new* or recognized. It's been misdiagnosed for many years. While COPD and emphysema patients have to tightly guard the amount of supplemental oxygen they use, that's not the case with IPF patients. Using too much oxygen can cause more damage for the COPD patient's lungs - and most of the other 200 pulmonary diseases. IPF is a completely different situation. As my lungs continue to harden, my need for more supplemental oxygen increases and there are no limits. For some reason oxygen vendors don't understand this. I don't know why they haven't been properly educated about these needs - the differences. It's disgraceful.

There are common traits amongst us IPF patients, but also vast differences. It's called idiopathic because so much is still unknown. Some IPF patients die when they're still on 5 liters O2. I met someone who was diagnosed with IPF several years ago and he's still not on oxygen. There are some people on 30LO2. I'm on 16LO2. So much is still unknown - especially the cause.

When people see me wearing a canula up my nose, I always sense judgment. Though I was once a smoker, my doctor thinks my IPF is the result of genetics - bad luck genetics. Smoking is a consideration in many diseases, but the most common denominators found in IPF patients are: Lupus, Sleep Apnea, GERD, and RA. Acid reflux was possibly the culprit in my case. The acid dripped to my lungs, the lungs scarred as a protective measure... and couldn't stop - became autoimmune. But I'm also very aware of the fact that I've had weak lungs my entire life - I never considered the risks.

I always tell my doctors the truth, but when someone is rude enough to ask if I ever smoked, I lie through my sweet teeth and say, "Nope, never touched the filthy things." I do this because I can guarantee you that anyone who asks this question isn't asking from a place of concern, but rather in judgment of me. As my esteemed Pulmonary Specialist observed, most people with congestive heart failure will die because they were smokers... but no one ever grills them in judgment. Interesting, huh?


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Many people with my disease simply give up. IPF patients are the most depressing lot of people I've ever encountered. From the moment I was diagnosed, I knew I wasn't going to go that route. I was proactive from the very start. The best medicine I've given myself is laughter. Positivity is the best medicine for anyone.

Though I did everything right - was the perfect patient - preached positivity - waved my banner of hope like I invented the word... all hope was taken away from me. Every little teeny tiny crumb of hope was snatched from me. It happened fast. Hope one moment - no hope the next. Yet, I still believe positivity is the best way to live.

Since my diagnosis, I've wept very, very little because of the disease. I'm more apt to weep when reading a beautiful poem or watching spring unfurl in my forest. I'm more apt to weep with profound gratitude for the amazing people in my life - family and friends, and hybrids like Joan and Linda and Sue and Nancy and so many more who are both. I've wept with all the good news my children transport to my heart. I weep a little bit here and there for all the goodness in my life. I have no time for bitter tears. No time at all. I walk in gratitude.


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It's the honest to goodness truth... I don't know why I'm still here, but I'm glad I am. I have severe limitations, but I continue to greet each day with positivity... and a cup of morning coffee with Linda. I laugh a lot. I enjoy my children a lot. I have more projects in motion than my healthy friends have.

I try to be as forward thinking as possible... but every night as I slip asleep, I put a hand on my chest and pray for healing - or at the very least that I will awaken to another day... another cup of coffee with Linda, the views from my windows, projects to complete, conversations with my children, fellowship with friends. For all these reasons and more, I look forward to each day.

Love.