Ok, ok, I know… It’s been a LONG time since I last wrote. But I do have some great news that I still have to pinch myself to believe. I am off the supplemental oxygen that I needed around the clock since about the year 2000! I am using it at night with my bi-pap after undergoing a home sleep study that showed that my O2 level dipped down pretty low once in the entire night, so they thought it would be a good idea to keep me on O2 at night for the boost. But none is needed during the day. We have been watching this for over 6 months so this is no fluke. It’s real. I’m getting better!

Wow. After 7 years of lugging around tanks and being careful not to trip over the tubing, I am FREE!!! I still can’t believe it! And now for the $64,000 question: WHY? Why did I need it in the first place? And why don’t I need it now? What has changed?

Three theories, each provided by a doctor of a different specialty. The first, from my pulmonologist, is that because I’ve lost a large amount of weight over time (50 lbs.), that my body passed back over the threshold where I no longer needed the extra O2. One problem with that theory is that I see a lot of very large people out there in life walking around without supplemental O2—people MUCH bigger than I ever was. Why me & not them? I kept trying to interject the fact that I have Thalassemia Minor and that might account for the fact why my blood could not carry as much O2 as most folks, but my theory was shot done by both my pulmonologist AND a hematologist at the University of Chicago—not lightweights by any measure.

OK, the next explanation came from my sleep doctor. He stated that since I changed from C-Pap to Bi-Pap in the fall of 2006, and had the pressure settings changed to a much higher rate, I was getting more air pushed in & out of my lungs all night long during the past year. He thinks this also changed the “setting” in my brain to allow me to use more of the O2 in just room air. Also, he thinks the reason why I wasn’t taking in as much O2 as needed during the night was because of the Inclusion-body myositis, which may have been affecting the muscles around my diaphragm and lungs and not working enough to process my breathing while I’m asleep. Hmmm… maybe.

Finally, my cardiologist just last week offered her own opinion. She thinks that I might have reduced the level of inflammation in my body through diet and supplements to the point that I began to achieve a better state of health and the O2 usage improved. I also have been exercising much more regularly than at any other point of my life. I work hard to make sure that I eat a lot of vegetables and fruits, whole grains, and good sources of protein, including meat, poultry & fish. I have lost weight consistently over these past 6-7 years and hope to lose at least 50 more pounds.

It’s also true that my diabetes remains under remarkably good control with a minimum of oral medications: Precose to block carbs in my intestines and a tiny, tiny bit of Glyburide to improve insulin production to clean up any excess sugar in the blood. My last Hemaglobin A1C was at 6.1, and before that at 5.9. And I was diagnosed with the diabetes at about the same time as I began the supplemental O2. So maybe what she’s saying could have played a part of the puzzle that is me.

Regardless, I’m happy about this new development, but I’m still not out of the woods by any measure. I’m experiencing greater & greater muscle weakness, especially in my thighs, and it’s getting harder for me to walk any distance without feeling it. This is something I can’t improve. The IBM will progress unmercifully & there are no treatment options currently available. But I take my supplements and exercise regularly and hope to slow things down. That’s what I have to work with & so that’s what I will continue to do.