The area of finance is probably the one area I struggle with the most with alpha-1 antitrypsin deficiency (AATD), aside from the physical aspects of it. It seems like I’m constantly receiving bills that are becoming more costly, even though I’m paying them off. When the pressure is on, I either try to calm down to find a solution, or I go to people in my life who can help me figure out what to do.
Either way, I must realize that my life doesn’t have a future start date. I had to take responsibility for my finances. That means not waiting for a rich husband to come along and not lounging around, hoping someone decides to bail me out of this situation.
A couple of years ago I was taking a walk with a friend, next to a lake, near my home. My friend kindly turned to me and said, “You know, I was listening to a pastor talk, and he was saying that your life doesn’t start sometime after you get that special someone or something . . . it is happening right here, right now.”
That moment gave me the motivation to take responsibility for my life; it’s one of the most important crossroads I have come to. This happened before AATD started affecting my ability to be on my feet for long hours, but I am thankful for the realization.
So, when I realize bills are piling up, I have to stop, breathe (because in times like these I tend to hold my breath), and try to calm down. If I fail, I call someone who will truly listen. That person reminds me it will be OK and we come up with a plan to find a job or solution.
Read about experimental therapies for AATD
This is a similar story to that of many with chronic illness, of trying to work and, at times, failing to meet the standard that the job demands. Although it may sometimes be the nature of the job or even the employer that has caused the failure, it is sometimes due to the issues the patient has physically.
Right now I have a full-time job an hour’s drive away from me and it is all very exhausting. It’s a temporary job, but it is currently paying the bills, which is what I need. The recent jump in gas prices didn’t help me much either, but I am thankful I am not asking to borrow money from friends or family.
Asking for money from friends and family is convenient, but feels like a prison to me. When I see the person who loaned me money I am reminded of what I need to really give them because that is the expectation when I asked to “borrow” this money.
It seems true what they say, that “the borrower is a slave to the lender.” The fact that my parents have their hands full at their home, and my desire to be as independent as I can, have kept me off disability for the time being. However, part of me wonders if I really do need to be on it, as difficult as it is to work and how exhausted I am after every workday at 35 years old.
I have to go home from work sick often because of my condition and because I was raised to be a productive member of society, I hate those days. I know I am not helping my coworkers and I want them to have a reliable teammate. But if it means bills are being paid, I am OK with that, for now, anyway.
Another reason I am still working is knowing life on disability is difficult, too. The income will be minimal, so I know the day is coming when I have to survive on very little but for now, I want to be free to enjoy the life I have. To do that, I have to be less stressed.
I also want to save up money for the future. This may mean temporarily giving up a costly habit. It could also mean creating a whole new way of life so that, eventually, I can enjoy my life without so many luxuries because being content with less means that when I have more, I can be happy then, too.