The main thing people should know is that I work, and did work throughout kidney failure, because I had/have to. I simply had to. It wasn't always easy. Sometimes it was just downright unbearable waking up at what seemed like the butt crack of dawn, but it was really eight o'clock. My chronic fatigue and low blood levels left me with no energy by the end of my work days, and they definitely didn't facilitate the process of climbing out of bed. Just about every day I felt like putting my head on my desk and falling into a nice comfortable rim cycle.
Before the transplant, I was addicted to coffee. I was a "three-cups a day" girl, with an Earl Gray tea in the afternoon, just the switch things up a bit. Earl Gray still has a killer amount of caffeine in it, as in Kills the Zs.
Some people, a lot actually, when they have kidney failure or have to go on dialysis choose to go on disability from work, either short term, or permanently. And some choose to take an extended leave under the Family and Medical Leave Act. Every employer is different, and every illness is different, but here are a few things being sick taught me about health care, work, and bosses.
- The Family Medical Leave Act doesn't actually entitle you to paid time off. Common misconception? No? I guess I'm just stupid, because I actually thought that the point of FMLA leave was so that when you do have to take time off because of an illness, you don't have to worry about a paycheck. I was wrong. FMLA, according to the law, only entitles you come back to your job and continue to receive medical benefits during and after taking a period of unpaid time off from work. It's there to keep your employer from firing you if you get sick, because unfortunately some A-holes use to do that, and maybe still do, but hopeful they're in prison now. The way it works at my job: I am entitled to an unpaid amount of FMLA certified leave (time off from work to deal with anything kidney related), but I have to use all my paid leave (sick days, vacation days, and personal days) before getting to the unpaid part. Some people think of this as a really good benefit. I however, do not. Yes, it's nice to be able to return to a job and a steady pay check after being sick, and it's also nice to continue to get health care benefits if I'm not working for a long period of time. But it would also be nice to NOT have to use ALL your paid sick leave and paid vacation days. SOME paid FMLA leave would be nice. Even if it's a few weeks. One reason I tried to hurry back to work after my transplant was because I knew I needed to take a few days off before and after my wedding. And I really needed those to be PAID days off.
- Not all companies offer short-term disability. Mine is one of them. Some companies offer a disability plan where you're allowed to receive benefits and somewhere around five percent of your salary while taking time off to recover from surgery or an illness. If you're company doesn't offer this, you can apply for short-term disability insurance through companies like Aflac. Note: apply for this insurance BEFORE you're actually sick. If you're already sick, the company will not cover you, and instead they'll ask you if you want coverage for when you get cancer. Yeah.
- Sometimes people just assume that you're better. And this is annoying because those people aren't doctors. Thank God I filled out those FMLA forms. Those will shut anyone up.
- Even though we have "Obamacare" you still have to worry about not losing benefits. This still kind of scares me because I know the new health care plan guarantees that people with preexisting conditions can get coverage if they don't have insurance. That used to be a big problem for us sick people. I was rejected twice by an insurance company when I didn't have health coverage after graduating college. The new plan makes it so insurance companies can't really do that, but health care professionals still worry about patients losing all or portions of their coverage if they suddenly lose their jobs and therefore lose their previous health insurance.
The reality is, it's really hard to stay motivated to work when you're sick like I was. Every day is a struggle. I made the decision to continue working up until the day I had my transplant because I was trying to plan for the future. I knew I didn't want to go into unpaid leave because that would have meant A) wedding vendors weren't going to get paid on time; and B) I would have had no leave to take off before or after my wedding, and even that was not enough. For Ben and I, the biggest takeaway in the working/not working scenario was that you always need to have a back up plan. And for us that was establishing our emergency fund. Most sources recommend an emergency fund of three to six months of monthly expenses. Those are the types of accounts that come in handy if you want to take a really long period of time to get back on your feet following a surgery. Or if you want to take off a month to finish planning a wedding. However, there's no law that covers the latter. I recommend quitting your job to plan your wedding. Oh, and marrying someone rich.
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