Six years ago, my life changed. It all started with light cramping in my stomach. I was in my early 50’s, so I thought I was going through the change and ignored it. One Sunday morning I woke up and my side was blown up. My husband quickly put me in the car to take me to the hospital. We lived on Ft. Myers Beach at the time. It was Spring Break and we couldn’t get over the bridge because of all of the traffic. We ended up at a hospital in Naples. I don’t remember much about the incident after that because I was on morphine the entire time. Doctors said that my appendix had perforated, which is different from bursting. When your appendix bursts, you get sick instantly. When it perforates it leaks slowly into your body. By the time I reached the hospital I was septic. The poison had ruined my colon and part of my intestine, and both had to be removed.
I applied and was denied for Social Security Disability. In his denial letter the judge listed three jobs that I could still do. Two were cleaning and retail. I felt bad not being able to work, and I tried going back and doing exactly as he said. I was fired from the cleaning job because I couldn’t keep up with the other workers. Normally I weigh between 115 and 120 pounds. Since I’d been sick, I’d lost a lot of weight and was down to 92 pounds. I couldn’t carry the vacuum cleaner on my back like the other girls, and they moved much faster than I was able to move. I tried retail, but that job landed me back in the hospital. During a 10-hour shift in December I ate a bag of popcorn and got sick. I hadn’t realized just how compromised my system had gotten and that eating seeds would make my situation worse. I had Diverticulitis and had to go back into the hospital. This time I left with a colostomy bag.
The colostomy supplies that I need cost $300 a month. If you have health insurance, you get a three month’s supply shipped to your door before you even leave the hospital. If that were me, I would have no worries in the world. But, since I’m uninsured, I pay for supplies out of pocket. Luckily, when I was discharged from the hospital, the nurse snuck me some of the colostomy supplies. You are supposed to change your bag every 2-3 days, but I stretch mine to last 5-7 days. When I first got home, my husband and I ruined 6 or 7 bags trying to figure out how to change them. If you have health insurance a home health nurse comes and teaches you how to use your bags. They also do a well-check visit once a week. I’m fortunate to live in a caring community. The local EMTs are familiar with my situation and started checking on me once a week. They check my blood pressure, see how I’m doing, and refer me to doctors, but they can’t change the bag. As soon as the Coronavirus started, the EMT said they had to stop the home visits, which I completely understand. Through all of this, the hospital staff have been really nice and helpful. The surgeon referred me to WeCare Manatee County, a program for people who are uninsured. WeCare helps with some medications, but they don’t help with medical supplies.
My husband is 67 years old with health issues. We live mostly off his Social Security. We use food pantries and utilize what we can to get by. He also works at Dollar General making $9 an hour which gives us between $100 and $150 a week. He’s working now, through the Coronavirus, exposing himself to try and support us. If he didn’t, we wouldn’t survive. But I worry because he’s putting himself out there with this virus, and he shouldn’t be. I’m grateful that we live in a very rural area, so the risk isn’t as high. But it just takes one person getting sick. If he gets it, I will get it. I know that my immune system can’t handle it. Except for doctor’s visits, I haven’t left my house in almost five months because I’m prone to catch everything.
Truthfully, if I had health insurance, I could have avoided 99% of this. With preventative care, doctors would have caught my appendicitis early. Now, I try to cope living with my new normal. My mental health is not good, as you could imagine. There are days when I don’t want to get up. I’m a prisoner in my own brain and my house. Luckily, I have my husband. My two adult children live in the New England area and we text and talk on the phone. I’ve joined several online support groups with members from the UK to Australia. Group members are understanding and also share supplies. One member in Maine wears a bag that’s slightly larger than the size I use. She’s gifting them to me and I’m covering the shipping. I’ll try using masking tape to make them fit.
Recently I hired a disability attorney and reapplied for Social Security. They are sending me to their doctors, which is fine because I realize now that I will never work again. I used to be a vibrant person. I was a Social Worker for years before I switched to retail. That’s another piece of irony I’ve encountered-when I applied for Disability the first time, I had to go see a psychologist. He said that my IQ was too high, and I was denied because I was “too intelligent.” Does that mean I can’t be sick? Now my husband and I live in a tiny house with a leaky roof and termites. It’s almost like a bad dream.