Money, money, money
Today’s Prompt: How does living with Migraine and Cluster Headaches impact your financial situation?
Oh, wow, what a loaded prompt! Let’s see if I can make some organized sense of this.
Health care costs
Migraine treatments are expensive. Migraine drugs are expensive. Health insurance is expensive. It’s even worse if you don’t have insurance. Between my premiums and deductibles, my out-of-pocket expenses easily top $5,000 on a good year. That doesn’t include the $1200 a year spent on nutritional supplements recommended by my doctor but not covered by insurance. Then there are chiropractic visits, massage therapy, the upkeep on my TENS unit, and all those ice packs and heating pads.
I am currently receiving Social Security Disability Income benefits. This is a recent change and it took me several years to accept that I could not work. I’m stubborn and I really do like to work. The idea of sitting at home “collecting a check” does not work for me. Frankly, I doubt it works for most people who are forced on to disability. The money just isn’t that good and the boredom can drive you batty. Part of the disability application process included listing all of my jobs for the past 15 years. As my husband and I poured through our tax records to find the needed information, a pattern emerged. I could hold on to a job for about 2 years before the symptoms of my headache disorders finally made it impossible to work. Then I would be unemployed for 4-6 months before getting a new job. During my periods of employment, I lived in constant fear of being disciplined for poor attendance or poor job performance. I’m not a slacker. I loved every one of my jobs and worked hard. I took pride in doing a good job. The unfortunate reality was that Cluster Headaches and Migraines were much stronger than my determination and willpower. It wasn’t just one thing that “put me over the edge”. I’ve had Migraines my whole life and still managed to work. I still managed to work with Cluster Headaches, too. But when I started having back problems, that was the last straw. I just couldn’t “white knuckle” my way through the day any more. I even tried self-employment from home. The best I could manage were a few hours of productivity each week. I made good money when I worked. The problem wasn’t my skills, my work ethic, or my willpower. The problem was that chronic pain sidelined me more days than not. Even on the days I was able to work, I spent hours in agony between appointments. If I were healthy, my education, training, and skills could easily land me a job making $50,000 a year or more. As it is, I’m stuck with $12,000 a year in SSDI. Don’t get me wrong. I’m grateful for the assistance. I’ve worked hard all my life and I’ve earned the benefits. I have no doubt I’m “entitled” to it. I just thank God every day that my husband is still healthy enough to work full-time and honorable enough to have stood by me through all of this.
Costs of accommodation
This is a much more difficult cost to quantify as it includes so much more than money. My unpredictable pain schedule means that household chores don’t always get done. I’m not talking about keeping a perfect house — I’m talking about having enough clean dishes for the next meal or clean clothes for the next day. It takes a terrible toll on my family to have to work and go to school and then come home and take care of meal preparations, simple clean up, and look after me. Take-out dinners are too common in my home. When I am having a bad round of pain (which happens at least one week every month), everything stops. No meals get cooked, no dishes get washed, no bills get paid, no letters get mailed. The guys can’t possibly keep up on all of it. When I am feeling well, I’m the organizer of the family. Without me, frankly, they just get lost. It is emotionally draining for them to watch me be so disabled. They know it’s not like me and their hearts break with the thought of what could and should be.
All in all, I am very fortunate. I have health insurance and a steady income. My husband works hard at a steady job. He loves me and does everything he can to help me. I have great kids who are compassionate and hard working. We are all migraineurs. Thanks to my experiences, hopefully they will never have to suffer like I have.
Pain-free blessings from a Clusterhead,