If I had it to do over again
There’s a reason why we have the saying, “Hindsight is 20/20.”
What do you wish you had known at the beginning of your
patient journey that would have made it easier and less scary?
If I had it to do over again, I would not have stopped seeing the neurologist who first diagnosed me with Cluster Headache back in 2000. He’s the only doctor who has ever been able to know what was going on and how to treat it.
Working at American Airlines in a non-essential position will get you put at the top of the layoff list after 9/11. In late 2001 I lost my job and my health insurance.
When the medicine ran out, I didn’t get it refilled. It never occurred to me that the one medicine that was helping was actually inexpensive. I could have easily afforded the $10.00 a month to keep taking it. It also never occurred to me to ask my doctor if there was a discount for paying out-of-pocket. I could have scraped up $85.00 four times a year. It would have been worth it.
I’m not under any illusion that I would have been able to prevent disability. After all, even with his excellent care, I only stayed employed because I had a cushy telecommuting gig. I know for sure that I would not have felt so lost or hopeless.
Dr. Z is so kind, with a calm reassurance that is rare. I think they used to call that a “good bedside manner”. Even though he finished medical school a very long time ago, he has stayed up-to-date with current medical science. Maybe it’s because he’s also a migraine patient. I’m sure that’s part of his motivation. I think it’s more likely that he’s just a really nice guy who genuinely cares about his patients. He would have been a calming force when I needed it most.
My message to you:
If you’re reading this and don’t have insurance or can’t afford medicines or doctor visits, please don’t just sit at home thinking there is no help. There are options to make it affordable, and in some cases, free.
Call your doctor and ask about a reduced rate for visits. You may only need to visit once or twice a year for check-ups and refills. Maybe you can work out a payment plan. If those options don’t work, ask for a referral to a clinic that offers free or reduced-cost services to low income patients.
Then make a personal visit to your pharmacist. Askabout generic alternatives to brand name drugs. There are also patient assistance programs for nearly every drug available. NeedyMeds.org is a clearinghouse website for nearly all of them. If your medication isn’t available for free, then you might try a discount program like GoodRx.com. Whatever you do, please don’t give up. There are options…and a lot of hope.
p.s. Dr. Z and I reunited in 2013. We’re doing great!