I went to visit a friend last week, a very sick friend that I thought I could help because if there is anyone who understands the crippling monster called fibromyalgia, I certainly do. The friend that I will call Betty is single, her parents dead, and she had no family to help when fibromyalgia struck.
Before fibromyalgia, Betty was just like you and me. She owned her own home, loved to be with friends, and she was gainfully employed, owning her own beauty shop for over twenty years and then taking a job in a hospital ER where she spent fourteen years.
“I’ve always been around people every day, for years in the beauty shop and then in the emergency room….now I’m in this small room….I was very hands on, very in the middle of things in my town and at work. If a doctor [there in the hospital] had a problem with a chart, if a nurse had a problem with a chart, who did they come to…me. I loved to work, and I did my job well.”
That job has been gone for two years now as Betty struggles just to get from the bed to the couch on many days, never free from the pain that might be in her feet and legs this morning, her back and arms this afternoon, and somewhere else tonight. Of course, with the job went the paycheck that used to allow Betty to do the things that you and I will do this week.
First, Betty took her sick days then she took her vacation days. Next she claimed a short-term medical disability leave, allowing her a paycheck for six months. She sold her home and many other possessions then she sold her jewelry when she didn’t get better. Finally, she applied for disability, knowing she had reached the end.
“God was definitely with me. I had heard horror stories about trying to get disability income, and I had no idea what I was going to do if I were to have no income for the usual three years that it takes to cut through the disability red tape. Amazingly enough, with my medical documentation, I was approved within three months.”
So how well does disability work for Betty? It’s tough, to say the least.
1. She receives a little over $1,000 per month.
2. She lives in government housing, for which she pays $214.00 each month. Of course, there are others living there who have never worked and who pay less than $20.00 per month to live in the same complex. Oh, and believe it or not, there is one man who is actually PAID $15.00 per month to live there!
3. She has Medicare (not Medicaid) and pays $105.00 per month to get it.
4. She cannot afford a Medicare supplement so she actually cannot use her Medicare since fewer and fewer doctors are accepting it, and she does not have the 20% to pay out of pocket.
5. She still has the vehicle that she owned when she became ill, but she is going to have to sell it because she cannot afford the $254.00 monthly payment on it. If you’ve been keeping a running total here, you know that these three bills alone drop her monthly income to just above $400.00 per month to eat, pay utilities and upkeep on her vehicle, which leaves very little to do anything else.
6. Betty is fortunate; she does receive food stamps…a whopping $16.00 per month! AND…twice per year, she receives a break on her electric bill. And while I am being sarcastic here, she says that she is beyond grateful for these small benefits.
So how the heck does she do it? I don’t know, but I’ll tell you exactly what she told me.
“It’s amazing the expenses you don’t think about when you can afford to live. Today, I don’t put on makeup, use hair spray, or mousse my hair unless I have somewhere that I just have to go.
“On months I have to buy tin foil, baggies, paper towels, toilet paper, etc….that cuts from my food budget so I just know that I have to figure out something to eat that I can afford. I buy my medicine first so I always have it, but most people don’t even realize what they pay for toothpaste, deodorant, etc…
And just in case you are thinking that paper towels are a luxury and that she should use cloth, “The apartments do not have washer/dryer hookups so I have to go to a laundry. It costs $1.75 to wash a load and $1.50 to dry it. It’s cheaper to use paper towels.
“I also was a smoker, and I have to admit that I liked to smoke, but that was the first thing I quit when I knew that my income was going to be gone. I was NOT going to be one of those people who couldn’t afford to eat but kept right on smoking!
Betty is one of the lucky ones. She has friends who have been her mainstay in some pretty dark days. In fact, with what she already owned and what friends have given for birthdays or Christmas, her government housing apartment is as tastefully furnished (albeit less expensively) as was her three-bedroom home. However, even the friends did not always know just how needy she was.
“One of my friends asked me what I was going to buy when I received my first disability check. I told them a new toothbrush. My friend nearly died because she had no idea that I needed something as simple as a toothbrush.”
Other friends ask her to visit or even to just come over and share a meal. “Most of the time I don’t feel like going, but I also just can’t afford the gas it takes to make even a 20-30 mile round trip very often.
“Would I love to get back into society and the work force? You betcha! Can I do it now? Not at all.”
Betty and I spent several days going over her diet, talking about removing the carbs from her diet, discussing the supplements that did so much to help me get my own fibromyalgia under control, and tasting various recipes made with the ingredients she needs to incorporate into her daily routine if she is to recover.
In the meantime, she continues to struggle both physically and financially; however, she is also quick to point out that even as tight as money is right now, she has never failed to pay her monthly tithe to her local congregation!
After all, it’s all about priorities, even when you’re fighting something called fibromyalgia.