butterflidust
New member
I am a 22 year old cystic, and have been on SS and disability since i was 18. I have a hard time struggling with my disease as well. I was in the hospital as many times a 6 a year. When i was going to high school, i worked part time at a nursing home. i worked as a dietary aid. My boss understood my disease very well, and allowed me to take as much time off as i needed. I noticed that now, since i have not been working, and have graduated, my lungs are doing better. I dont know if its because of my less busy schedule, but my lungs dont have such a hard time keeping up.
I am now a home maker, my husband works full time, and between the two of our income, we get by financially just fine. I am also in the hospital a lot less, between 3-4 times a year. I do however, have a hard time balancing my "allowed" income that the SS and disability allow me, with the income my husband gets. If he makes too much, my SS will drop, and so will my insurance. I can live with out the money, of course, but as you all know, insurance is a must. So its a constant struggle, trying to keep out budget in the amount that was alloted to us. You may have a problem as well, if you get a higher paying job. They may take away your SS insurance, so if you are able to keep a job make sure you know the monthly amount your state will allow you. trust me, its the biggest pain in the a**.
I am now a home maker, my husband works full time, and between the two of our income, we get by financially just fine. I am also in the hospital a lot less, between 3-4 times a year. I do however, have a hard time balancing my "allowed" income that the SS and disability allow me, with the income my husband gets. If he makes too much, my SS will drop, and so will my insurance. I can live with out the money, of course, but as you all know, insurance is a must. So its a constant struggle, trying to keep out budget in the amount that was alloted to us. You may have a problem as well, if you get a higher paying job. They may take away your SS insurance, so if you are able to keep a job make sure you know the monthly amount your state will allow you. trust me, its the biggest pain in the a**.