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(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us
MAC & Bronchiectasis | Last Active: 5 days ago | Replies (9325)Comment receiving replies
Sorry Folks, but the reality is that BIG money has chased cancer for years without a cure .. fund raisers .. an incredible amount of money for research. The pharmaceutical companies have absolutely NO interest in the tiny population of MAC/Mai patients .. that is our reality. We are an "orphan disease" which would yield zero profits in terms of what they are looking for. THAT is our truth. So am I going to beat my head against the wall with the small amount of energy I have .. NOPE!
For myself I know that for my best health and recovery it is important that I " put ALL my energy into what I can control .. and let go of what I cannot control". To me that means focusing on putting my energy into living my life as happily and healthily as I possibly can each and every day .. giving thanks for my blessings each day .. and NOT focusing on what I CANNOT control .. which is the outside world of big business .. pharmaceutical companies that only care about profits etc. To me peace and serenity are primary in my life .. AND a caring supportive environment on this Forum. Let's all focus on the positive in our lives .. remembering those around us who have it SO much worse! Let's count our blessings each and every day. Go in peace. Katherine
Replies to "Sorry Folks, but the reality is that BIG money has chased cancer for years without a..."
I see Dr. Kenneth Presberg at Froedtert Hospital in Milwaukee. He is teaches and also sees patients. He is a wonderful doc, very thorough and very knowledgeable.
Hello Sophie,
I see Dr. Lipchick also at Froedtert! Small world, isn't it!
It sure is!!! Don't you think thsee are s ok me of the best doctors in the world! !! Ive been seeing him since 2000..
I just hope that this is still a forum that people will feel comfortable coming to if they have a bad day or are frustrated or need to vent. It's a perfect place to get a pick me up. We shouldn't judge anyone on how they choose to take their journey. We can offer advice, help, support and suggestions but in the end we all will do it our own way. Who am I to say my way is the correct way? I just want this to be a safe, feel good place. No judgements. Janet
I agree, I've never had a bad doc or nurse or experience there ... quite the opposite, many many great -- some funny -- experiences there. My primary care doc is also just fabulous!
Gee, I sure hope that people feel comfortable posting here, no matter if they're having a bad day, good day, or just an 'off' day. This is the place to ask questions, vent, get support and encouragement, help others, etc. I'm sorry if I led anyone to feel that I was judgmental.
Janet, I think you know my heart by now .. if ever I have NOT made you feel safe or feel good .. it was not my intent. I am very glad you spoke from your heart .. and I am hearing you. Katherine
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@katemn, I just LOVE your reply about BIG money going into cancer treatments & cure for years. And now with the aging population, a lot more money is going into the anticipated upcoming explosion in Alzheimer's disease. So I'll take my 3 antibiotics, do my breathing exercises, get plenty of rest, think positive . . . and thank heaven I only have NTM/MAC which has been very treatable for me since 2007. Yep, I count my blessing EVERY DAY -- honest! I have very little to complain about.
Paula