I am at my most Sick currently and that makes it hard to fight battles. To solve problems like I used to. I had an overnight oxygen test that was abnormal enough for some people to say I get oxygen. I took test but time passed and no word. I tried to get my pulmo written report but medical records found nothing. Months later I did telemedicine visit with my internist and first thing she said was oh you get oxygen. After she talked to my pulmo story changed. Weeks later my medical supplier said why aren’t you getting your oxygen? I said I was told I don’t qualify. They said I do. And I dug deep and they said by Medicare yes I qualify. Technically they don’t even know how bad I cause I have more time off Mestinon at night. This story is longer but wanted to start and see if anyone has thoughts. I still don’t get oxygen but thankfully I got a piece of help from ER doc about 10 days ago. Sculptor44

I requested to see a different pulmonologist AND I called a local neuro who has problems but at least is open and has communicated with my Mayo Clinic people. He is gonna see me too. So so need help. Wish I could go to Mayo as I am treated so very much respectfully and kindly there. The PA who is referring me is a poor doc but I am desperate. I should say I have some extraordinary docs like Rheumatologist who checked for Vitamin D deficiency. Can’t imagine where I would be if I didn’t know my body so can’t manage Vitamin D. I was so sick from barely any in me I had to rehab from it.
If I can ask am I doing something in error in this site? I find it odd no one made comments on my oxygen post. Some years ago I was on this site but my computer failed and I could not replace it. I didn’t have this problem then. I am sure it is something I have done or missed in starting back here. Sculptor 44

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I have become darn good at being a spectator when things go wrong like not getting oxygen. I can do nothing to some degree but watch as I decline. I am surprised that my oxygen on my pulseox turns up at or near 90% regularly now. Even going below. I have tried so many ways to say help me and speak to how massively my life is limited yet I don’t get helped. Not in profound ways til recently. I finally found a new GP to take me after a 2 year search! An entire half of medical groups refuse to take my coinsurance. New GP quickly agreed to the Mayo follow up. I don’t know if me being more blunt helped. Also since August I have been to ER 5 times and gotten 125 solumedrol to keep me going and out of a nursing home bed. To keep me in my apartment. The new local pulmonologist I consulted said doing this was ok. Right or wrong it has my nite time oxygen improved. But days still huge problem. I know the trip to Mayo Clinic will help next week but I admit to being more fearful at what will be found. Sculptor 44

I hate the term short of breath. It isn’t what I consider I have. So I just remembered the day when my PT showed up and my usual pacing to keep stable became upset when phone rang and my upper body dressing ran late into last 45m before she came. What happened next was I felt mild lite headedness phone rang her knock on the door and me getting the door. Then I stepped back so she could enter , still lite headed and fell into coat closet from my messed up breathing and oxygen. I keep being told I really do feel as much breathing discomfort as I report. I am calling Lung Association Monday to discuss what this doc wrote and how to handle this. I wished I had given him the log with all the oxygen levels on it. Of course his nurse had gotten a 98% that day. My dad was a lay leader in our church and an intensely heartful honest farmer in our small hometown. The truth is really extremely important to me. Really. I fight every darn day to breath. I fight. I work till at times I can only lay in bed. It is not just short of breath. Sculptor 44.

I am closer to getting oxygen than ever before. Apparently the local pulmo who is newer to me has stated it as what we do next. But his way of doing that is for me to pass his threshold of medical need during a 6 minute walk test. Given that would be affected by my Mestinon and even coffee I have no idea if that 6 minutes will PROVE what he needs. My pulseox has been even worse this past 4 days. Dressing takes me down faster and harder than a walk. I will share a secret at this point. This is why I sleep in street clothes. The amount of distress I would be in if I tried to put sleep clothes on would be awful. It would take at least an hour to recover from it. Maybe more. Of course oxygen or not someone needs to dig deeper cause my breathing issue isn’t just about muscle. Sculptor 44

at Pulmo Wednesday oxygen was refused. At this point I would give almost anything to even just have a day of oxygen supplementation. I really need my original pulmonologist at Mayo Clinic. I really got frustrated with this guy more than is normal. There is something secondary in my chest besides MG. I have considered writing a letter to the former pulmonologist. He is such a really good guy I know he would care. If he didn’t have time cause of Covid I would trust him to give me another pulmo more like him. The guy I saw was so ****** off that I insisted on seeing Mayo pulmonology he didn’t interview me and honestly made it his job to understand I didn’t need to be there. But also he really was a bully. The way he said what he said has had limited impact here at home.. Sculptor 44

I have no idea how this guy documented my visit but the surprises keep coming. The Pain Clinic was totally different than I ever got before and because pulmonologist mentioned are you getting enough pain management I felt his hand in the pain clinic issue. But today I was told by a nurse manager at my GP’s office I broke the rules on my hydrocodone by seeing a different GP temporarily so she is dropping me and with no warning refusing to fill my hydrocodone which I am on my last pill today. Now this rule was nothing me or my daughter was told about which I repeated to her plus I came back to her 3 months ago so I said why was this not brought up till now? I also said near end that my daughter is also her patient. Are you sure you want to do this to her 70yr old mother? She so she was being a cold jerk so I said at least give me 30 days, one refill to work on getting another doc. I asked when the decision was made. She said late last nite. Good Grief!!!!!! Sculptor 44

Having unusually poor Brain week. Forgot to share I think I found a new homecare person. I met her Tuesday. Now I badly badly need a shift of help from her. She is coming tomorrow tho I wanted her sooner. She is very very kind but havin difficulty with her hearing my pace is slow motion. She wanted to bring a second person tomorrow that will be her backup. After today and a fall from already worn to he bone she either sticks to an hour and doesn’t give me 2 people to deal with or I have to cancel. She has a lot of good qualities. I just need to be strong enough to help her slow down some. Sculptor 44