(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us

Terri, I am sorry to hear you were diagnosed at age 40. That is very young. Did you live with a smoker and possibly got your COPD from second hand smoke? I am not familiar with Alpha-1 deficiency. Jess’s brother had Diabetes Type 1 and also COPD. The Diabetes put him on a fast track and when he had a flair up last November, he was hospitalized for 10 days before going in to Hospice. He passed away a few days later. It is a shame that your Mother passed away at an early age of 58. Smoking puts such a hold on people. I lost my Mother at her young age of 45 due to breast cancer. I feel very fortunate to be healthy and I am 69.

Our son left for Colorado early this AM. I miss him already because we probably won’t see him until the holidays due to him and his wife moving from CO to the State of Washington. Our other son was with us for 6 months and left about 2 weeks ago. I like getting back to the normal routine but when one of the boys is here they are real supportive and do whatever I need around the house. However, it keeps me strong to be on my own. I have a sister in law here in Sebring, FL and a brother, who is not helpful at all, in Northport, FL. Do you live in Jacksonville? Do you have a good support group nearby? You are extremely helpful to everyone in this group.

@suzie2017 I was raised by two smokers. My mom ALWAYS had a cigarette burning in an ashtray beside her. They smoked up the house terribly. And traveling by car was like being tortured in a smoke box. Doctors tell me that growing up with so much smoke def contributed to my health condition today. I have always detested that habit.

@suzie2017 There is a lot to be said for an easy going personality. I would imagine that makes caring for him a bit easier. I have a friend who has Alzheimer's and it was obviously coming on at age 38. He would tell me the same stories over and over and over. His mother and Grandfather had it as well. He is 59 now and on disability.

@flib I am right there with you. It is hard to make plans ahead of time. I too have bailed on people or just refuse to commit because I cannot count on the energy level. I have lost two friends over it. One was a close friend who hasn't spoken to me since April 5. People don't understand; hell, my own husband doesn't understand. They don't get it. I know it looks like we must be faking this because we can shop all day at a Mall one day, and then the next day; can barely move! It is as if someone had pulled a plug out and every ounce of energy has drained out. It is very weird. I now try to pace myself. I allow myself ONE fun (active) thing to do a day. NOT go to the gym, then out on a boat, then out to dinner........Outtings aren't the only thing I have to pace. I pace everything. Do you find it takes you way more time to get things done than normal? I find that I do things in stages, like little hurdles. Do a little, rest a little, do a little, rest some more. Then there are the odd days where I do have energy and go all day. I think every one of us on here knows exactly what we are talking about.

@tutti I am so happy that you got your disability. Now you can devote your time to your health. There is a two year waiting period before you can go on Medicare unless you are on dialysis or have Lou Gehrig's disease. I can only suggest perhaps using charitable organizations that help pay for drugs and treatment or go to non-profit health centers like the Mayo Clinic, Cleveland medical, and others like them closer to you. When you go to a non-profit institution, they tend to charge less for services and work out a payment plan. The Healthwell Foundation has helped me out tremendously with a very expensive medication. If you want to share what you need help with, perhaps I can help locate some resources.

@colleenyoung i totally agree with you Colleen. Gaelawree brought joy and light to this group! Speaking about her passion was Thanks for understanding that we are more than our disease! 

@tutti I'm on disability and Medicare...started at age 61...what would you like to know?

@windwalker Hi Terrie, ya it’s actually going to be easy for me since my son has a inversion table I can use. An adjustable bed would be helpful or get a piece of plywood & create a slated surface.

@windwalker Thanks Terri, yes I wonder why too. Doesn’t make sense to me why I have this.