Yes, so many with chronic disorders face these challenges. I feel that you learn over time how to face saying "no" when you are truly unable to function and attend an event. True friends, family will get better insight of what you are dealing with over time.

In the interim, try to find diversion all activities to do while stuck at home that match your energy levels. I will write more very soon.

Feeling being lonely usually comes back and go. It's something that I have to accept and acknowledge. It's something that I have to take daily.

Made,

Attempts to surround yourself w other possible, like minded people really helps . Taking a class, finding enjoyable diversional activities to do at home and outside really helps.

You have inspired many w your yoga already. We are all here to continue to inspire one another on this journey.

We ran into this situation just yesterday. Anytime there is a holiday or even just something as simple a going to friends house for dinner, we struggle. We have to pack the entire house basically. Make sure no one has been sick where we are going. Make sure we have access to electrical outlets. Then we can only stay for a limited amount of time before my daughter starts going downhill. As her mother/caregiver, I will start having major anxiety or even full on panic attack the entire time. It makes life very difficult and lonely.

Hello! I feel your challenges. Have you been able to find a support group in your area ? It may help to have a venue where others are truly empathetic

Made,

Yes, attempts to socialize when you are feeling ok are so important. We all have a need to feel connected to a community .

Connecting with others, cultivating relationships, creating memories assist us when we do have to home bound due to not feeling well.

Thanks for everyone's input. There is no support group in my area, but I do know someone at church who has dealt with NTM for more than 15 years and on meds for 15 years. We have lunch planned for next week so I can learn from her experience.

I was "accidentally" diagnosed through an abdominal CT in late 2015 by the radiologist (nodules and atelectasis in bases of both lungs). The pulmonologist confirmed the diagnosis through chest CT and x-ray. I chose not to have treatment after researching, as I was mostly asymptomatic. I'm an RN and was not interested in being on long-term meds (with unpleasant and detrimental side effects) if I could avoid it. I never had a sputum culture.

I have been ill about half the time since last November and am mostly symptomatic now. I have an appointment next week with my pulmonologist and will request treatment. I would like to go to the NTM Clinic at UT Tyler, TX, but want them to work with my local doctor.

I posted the above question as I realize I will probably not be able to teach nursing students anymore. I will miss being with students when they work with patients in the hospital. Students/hospitals are the main reasons I was sick so much last winter/spring! I have missed many activities, including volunteering, and realize that plans now have to remain flexible. Fortunately, I have many "inside" hobbies. No more gardening or long hikes.

Thanks for listening.

Blessings!

Hello! I am so glad that you are meeting another NTM patient next week who will share her experiences. Perhaps, the two of you can start a support group in your area.

I am also a RN who felt so isolated when I was first diagnosed 15 years ago . I had never heard of NTM; frineds nor family had ever heard of NTM at that time

Dear Okla woman,

Hello! I had to give up my career as a long term care administrator when I was diagnosed. I currently work on a limited basis as a consultant. I am also a St. Stephens minister / counselor through my church. I had been involved in the NYC support group since infancy stage 15 years ago. Yes, it is a lot of work - but so educational to hear the stories, challenges if others in the same shoes.

We all helped one another , through trial and error over the 15 years. The support and true friendships formed are so valuable.

Yes, I started coughing at church and at health club and had to stop going--everyone thought I had TB or the flu, difficult to even think of dating again, perfumes and chemicals really set me off. hard to make new friends in new area and home (downsized to a small ranch helps me) with the coughing, people at work still pile on the perfumes.....

Yes, I started coughing at church and at health club and had to stop going--everyone thought I had TB or the flu, difficult to even think of dating again, perfumes and chemicals really set me off. hard to make new friends in new area and home (downsized to a small ranch helps me) with the coughing, people at work still pile on the perfumes.....

Yes, I started coughing at church and at health club and had to stop going--everyone thought I had TB or the flu, difficult to even think of dating again, perfumes and chemicals really set me off. hard to make new friends in new area and home (downsized to a small ranch helps me) with the coughing, people at work still pile on the perfumes.....

Yes, I started coughing at church and at health club and had to stop going--everyone thought I had TB or the flu, difficult to even think of dating again, perfumes and chemicals really set me off. hard to make new friends in new area and home (downsized to a small ranch helps me) with the coughing, people at work still pile on the perfumes.....

Yes, I started coughing at church and at health club and had to stop going--everyone thought I had TB or the flu, difficult to even think of dating again, perfumes and chemicals really set me off. hard to make new friends in new area and home (downsized to a small ranch helps me) with the coughing, people at work still pile on the perfumes.....

Yes, I started coughing at church and at health club and had to stop going--everyone thought I had TB or the flu, difficult to even think of dating again, perfumes and chemicals really set me off. hard to make new friends in new area and home (downsized to a small ranch helps me) with the coughing, people at work still pile on the perfumes.....

Yes, I started coughing at church and at health club and had to stop going--everyone thought I had TB or the flu, difficult to even think of dating again, perfumes and chemicals really set me off. hard to make new friends in new area and home (downsized to a small ranch helps me) with the coughing, people at work still pile on the perfumes.....

Yes, I started coughing at church and at health club and had to stop going--everyone thought I had TB or the flu, difficult to even think of dating again, perfumes and chemicals really set me off. hard to make new friends in new area and home (downsized to a small ranch helps me) with the coughing, people at work still pile on the perfumes.....

Yes, I started coughing at church and at health club and had to stop going--everyone thought I had TB or the flu, difficult to even think of dating again, perfumes and chemicals really set me off. hard to make new friends in new area and home (downsized to a small ranch helps me) with the coughing, people at work still pile on the perfumes.....

Yes, I started coughing at church and at health club and had to stop going--everyone thought I had TB or the flu, difficult to even think of dating again, perfumes and chemicals really set me off. hard to make new friends in new area and home (downsized to a small ranch helps me) with the coughing, people at work still pile on the perfumes.....

I don't cough often but had one bad one at rehab got some water and all was fine. I seen to go in spurts of coughing.

I don't cough often but had one bad one at rehab got some water and all was fine. I seen to go in spurts of coughing.

I don't cough often but had one bad one at rehab got some water and all was fine. I seen to go in spurts of coughing.

I don't cough often but had one bad one at rehab got some water and all was fine. I seen to go in spurts of coughing.

I don't cough often but had one bad one at rehab got some water and all was fine. I seen to go in spurts of coughing.

I don't cough often but had one bad one at rehab got some water and all was fine. I seen to go in spurts of coughing.

I don't cough often but had one bad one at rehab got some water and all was fine. I seen to go in spurts of coughing.

I don't cough often but had one bad one at rehab got some water and all was fine. I seen to go in spurts of coughing.

I don't cough often but had one bad one at rehab got some water and all was fine. I seen to go in spurts of coughing.

I don't cough often but had one bad one at rehab got some water and all was fine. I seen to go in spurts of coughing.