If you follow my blog, you know I haven't written in a while. Life has been a sort of whirlwind for the last few months. I have felt drained and fatigued trying to keep up.
In March, I began searching for some type of supplemental work to help our family. I was denied social security disability due to not having enough work credits. However, being denied benefits based on work credits does not mean I am not disabled. That's where the system is unfair, I am not able to work due to my ankylosing spondylitis, hence I am not able to earn enough work credits. It's just one of those crazy scenarios. Our family was struggling between buying groceries or paying for my medical bills. When you only have $11 to spend on groceries, you have to get creative.
I knew based on my previous job, it didn't matter whether I sat or stood. I would experience stiffness and pain with my ankylosing spondylitis. I also had tried only working half days but still suffered and had severe fatigue. I began a list of what type of job I needed based on my illness symptoms. My list looked like this:
- Flexible scheduling
- Flexible options for sitting and standing
- Ability to work around my drs appointments
- Close proximity to my home (driving has become difficult on painful days)
- Employer who understood my illness
I used to hold a cosmetology license, but I knew I'd never be able to return to that profession. My arms, shoulders, and neck would physically not allow me to cut hair. I was a cashier during high school, but that involves me standing for long periods. I also was a fast food worker during high school, but there again I'd be standing my whole shift.
Finally, I started looking at jobs in my neighborhood. I considered dog walking, selling crafts, child care, and setting up a thrift type store. Most of these had several good points, but also some negative. Thinking of dog walking, I'm sure a large dog pulling on a leash would not be favorable to my condition.
I was still contemplating, when my daughter stopped by to visit. She got married last July and works three jobs. I'm very proud of the loyal, hard working, lady she has become. After she left, I was thinking about her places of employment. There was one that fit every item on my list of needs for me. I knew my daughter had to pay more in taxes due to this particular job. Also she is a newlywed and needed more time to relax and spend with her husband. Much to my relief, she agreed to give me her part time job.
I began in March, cleaning our church weekly. It doesn't pay a lot, $60 weekly. However, $60 a week really helps my $11 grocery budget for 3 people. Instead of beans or rice every night, we can have some variety of food. You wouldn't believe the relief that $60 weekly brings to me, my husband, and son.
This job of cleaning our church is tolerable with my ankylosing spondylitis. I live within sight of the church, so no long commute. I only need to clean the building once a week, but I can choose any day. If I'm not having a good day, I can do it the next day. Also, I have the option of breaking the work up into several days. Sometimes, I clean the classrooms one day, then return the next day to clean the bathrooms. Leaving the auditorium and choir for later in the week, because they are the biggest areas to vacuum. Since the church is my place of worship, everyone understands my limitations. Another perk to working at my church is my husband and son are welcomed to assist me in my job. This has been a tremendous benefit. Especially, since I have been sick and in the Emergency Room this week. My husband and son was super sweet and cleaned the whole church for me today. I am so blessed.
I hope each of you battling this disease, find a job that works with your condition. Don't give up! When you least expect it, the perfect opportunity may drop in your lap. I know we are not the only family struggling to pay the bills on one income. It is a scary place to be, but get creative. We all have talents although sometimes hidden. Use your talents to help bring in some extra cash. Remember, you are not alone. Many of us with AS, know the agony of wanting to work yet our bodies stop us.