@sueinoregon I am so sorry about your sister. Irene is an old name that means Peace (maker). I’d smack that husband of yours upside the head! Not that that’s a very peaceful thing to do, but it might make him take notice! My husband has sarcoid and is quite sick himself so we lean on each other. It wasn’t always like that so I understand how you feel about his insensitivity to your illness. I will pray he figures it out soon. That’s the thing with MAC - we literally can’t perform activities of daily living which may be frustrating for a spouse, but is way more frustrating for us!! I haven’t paid for the meds with Medicare and secondary insurance (retired teachers). Hopefully they won’t cost much for you. Big hug and know I keep you close in thought and prayer. (irene5)

@sueinoregon, I am so sorry about your sister, I lost my sister 3 years ago also and I know how that hurt. Sometimes family don’t understand this disease and they often think we’re just always sick. I have 5 kids and at first they won’t even try to understand what I was going through. I would feel so hurt because I wanted them to know it was so difficult for me. But they would often get upset and say mom why are you always sick and that hurt so bad. But it took about 3 years for them to understand it’s not me it’s the disease, and they know now I am going through a lot and they now support me all the way. They wanted me to just go out and enjoy life and I was always tired. But it took a long time but they do now. As for my husband he is one of the most wonderful man and he’s with me in everything I go through. Every doctor’s appointment and really supports me. It will get easier as you go. I wish you were close to Florida Jacksonville Mayo Clinic, it’s the best experience I had with doctors since I got Mac and all the other bacterial infections I’m fighting. The doctors are really great. But I’m sure there’s a Mayo that’s closer to you. I wish you all the best and hope that you will find the best doctor to work with you. Rita

@sueinoregon Hi. I totally understand where you are coming from with a spouse who doesn't understand this illness. Problem is, we don't look sick (many of us). My husband just tuned out my incessant coughing. He'd always question me as to why I don't have energy to do things. I felt like smacking him upside his head with a 2x4 and scream; Because I have mac!!!! It wasn't until my doctor said in front of him that I may need a lung transplant that he started to take this seriously. I am sorry that your hubby is being self centered about your condition. My hubby still forgets at times that my illness is still here and still something to reckon with. My husband has low spectrum asburgers syndrome, so you can imagine the empathy I get. That's right, zero. On the other hand, it has made me stronger. Sometimes having sympathy/empathy can make you feel like more of a victim to illness. To deal with my husband; I just keep educating him about this disease. I even read excerps from some of these posts. Mainly the ones about having a lack of energy. That is my way of proving to him that my fatigue is very real and is a result of having mac and bronchiectasis. I have a 2x4 if you need it! (LOL)