I have gone through almost $700 in co-pays for dr. visits, labs and various tests in October. This included a ct scan, sleep test and the usual O2 tests I take every four months. My wellness visits just happen to fall in there also. To say the least, I was averaging 2-3 dr. related appointments a week. After all is said and done and my wallet is empty, here is the bottom line. ( I am still waiting on my bills to finish coming in.)
- I really don’t need oxygen at night. But, I do stop breathing 30+ times during REM only. So, pap machine has been ordered. I will get back to you on how that goes. In mean time, continue oxygen at night. (Conspiracy theory- if you snore, you will need a pap machine since you have apnea. Guess, what? That means we all have sleep apea. Talk about a medical scam.)
- Stop playing with getting off prednisone. It threw some of my labs and tests off and I am fatigued. The amount I am taking is less than what my body normally produces anyway. Long term consequences are minimal considering everything I am suffering from.
- Team Leader Dr. Jackson feels that I have leveled out. Bad news, my CT scan is identical to three years ago when I was diagnosed and started this blog. Good news is that it is identical to three years ago. So….lung function has stabilized. Current medication routine is working. I now go to 6 month tests and dr. appointments. Yay! Less money out of my pocket. Dr. stated there is no longer a timeline on my life expectancy now.
- One of my wellness labs came back questionable. I was not informed which one and the primary dr. has not released the results to my lab site. They wanted me to run the lab again. I told them “No” unless they could tell me what was exactly wrong. After a long pause, I was informed it looked like I had an infection. I said, “Yes, that would explain the fevers I have had the last couple of evenings. But, I am already on antibiotics every other day anyway. And I am probably in a flare of one of my many conditions. I get labs done in three weeks again anyway.” No…that was not good enough. They want me to do it again and have a follow-up with the primary care. Of course my mind goes to “NO”. I just spent over half a month in doctor’s offices. I refuse to go back over “you might have an infection”. I told them to send me the lab request so I can decide if I will do it again. I politely informed them that if the primary care was concerned, to please call my Team leader at UM and discuss it with him since he is my medication manager.
- Read an article about quality versus trying to stop dying in October AARP. Interviewee was asked to take sleep test (read this after mine had been done). She said no. The doctor said she might die in her sleep. She said she thought that would be great and that she wanted to stop thinking about the What Ifs in life. It made me rethink why I am refusing the lung transplant. I came back to the same conclusion. No, I don’t want it. Dying in my sleep would be great. If I die during a coughing fit, fine also. Spending 6+ months in a hospital with only a 25% chance of getting out, not good. If I can keep my lungs stable, I would do better over the long haul than rushing to fix something God has allowed to go wrong. So focus on today and enjoying today. Tomorrow is not written.
Let’s get back to quality than longevity/quantity of life. Enjoy each day. Enjoy each holiday. Enjoy my family and friends. So, here is how Daisy helped me spend October with some of my friends.
Warning: this question will cause you to analyze your thought processes and how you react with feelings.
5 minute meditation question….Are your thoughts and feelings true guides?