1 of 1

Write now Article Tools

I live in the beautiful state of Arizona. I moved here with my husband in the hopes that the environment could offer me a better life with my disease, access to more doctors that might specialize in my disease and it's many sub-specialties, and the hopes that more programs would be available to help us, medically, and financially. It was a leap of faith to get married at all when you are on a social security disability income (SSDI). As a consequence of marriage, my social security disability income check was decreased by $250.00. I wasn't about to miss out on the dream of being married because of this penalty. Although, we certainly could use that extra income. Since I have moved here to Arizona, I am saddened to say that my health has completely plummeted and is now in a threatened state. I went from being relatively healthy for a 30 year old Cystic Fibrosis patient, taking very little medication, to having my entire life re-arranged. My life has now become a matter of fighting for each and every day. My day is consumed being so sick and tired that I barely have the energy to exist any longer. I still have to get up, and go to work though, because I cannot afford not to. I have been working part time, which is allowed to a certain extent when you are on disability, but it is now to the point where I do not feel well enough to be working. My husband has a good job, and yes, we have health benefits that are available. I am also on Medicare, however was kicked off of Medicare part D this year. I was told that I was lucky I "slipped" through the cracks and was on it for a year when it was first introduced. I was also told that our income is double the amount allowed to be eligible for assistance to paying for Medicare part D. Regardless of the fact that I had Medicare part D for the year, I was still some how stuck paying a $50 co-pay for almost every single one of my medications. I still cannot get a straight answer as to why that happened. My husband and I had to pay out of pocket almost $10,000 this year for medications. Now, without disclosing our actual income for his job, my income is sparse and very minimal. My disability check is $433.00 per month. I have been hospitalized 5 times in the last year and a half, and had over 9 different surgical procedures. I started looking for programs or anything available for the person who has an income(my husband), but that is not enough for the amount of medical expense we have. Each hospital stay has averaged about $60,000. I have also had months of home IV antibiotics to pay for as well. Medicare does not pay for home care, but luckily my insurance pays for most of it, not all though. Now that my health has become such an issue, I cannot seem to find one single bit of help through any state or local organizations. Apart from having 2 terminal illnesses,Cystic Fibrosis, and Diabetes, I have the stress every single day I wake up and get the mail as to how we will pay for the medical expenses. I see all these programs and amazing comfort measures that are taken and given to pediatric patients, until you are 18. I see programs available for the senior citizens who are facing many medical issues and expenses, but what about the middle-aged woman who needs to stop working because my health is declining, but can't stop even a part-time job because without that income, we literally would not be able to put food on the table. It is tragic and so frustrating for us. I spend a large amount of my time stressing about what to do for money, how to pay to get myself well, but that isn't a luxury I am afforded. What about us? Who is gonna help us?

Learn more about this author, Jennifer Devine.
Click here to send author comments or questions.

Add your voice

Know something about Reflections: Who's there to help the disabled middle-aged American?
We want to hear your view. Write now!