Choosing convenience

May 20, 2019

Let’s face it, dealing with chronic illness takes a lot of time and effort. There are the myriad medical appointments, tests, and treatments. There’s handling the day-to-day symptoms. The flares just add to it all. And that’s on top of having fewer “good” hours in a day than most people. It’s exhausting and overwhelming at times.

That’s why, after many years, I have finally decided to choose convenient options without guilt whenever I need to. Yes, it’s better for the environment to use reusable containers instead of sandwich baggies, but I’m using the baggies when I need to. I will still use the reusable containers most of the time, but when I can’t fit all of the containers into my cooler to bring with me to the doctor appointment, or when I’m going to be out all day and I need more space in my bag, or when I need to make my bag as light as possible, or when I can’t keep up with the dishes then yes, I’m going to use the plastic baggies and then throw them away, and I won’t feel guilty about it.

Similarly, I should use rags when I’m cleaning. But that’s more to wash, more to deal with. So I will use paper towels at times and I won’t feel guilty about that. When I’m in a bad flare, I will use paper plates and plastic forks without guilt. I will run the air conditioner if that helps me to feel better. I will take extra long showers when that helps me. And I will do all of it without guilt.

I believe that every person on this planet has a responsibility to do what we can to preserve and improve our environment. But I am also aware that we have to accept our limits. And maybe one shouldn’t come at the cost of the other. I have been adhering to this new mindset for several weeks now and it has been freeing, not to mention helpful. Instead of doing what’s “right” or what I “should” do, I choose what makes the most sense at that moment. Sometimes I use the reusable containers, sometimes the sandwich bags and you know what? Either one is ok.

Now I’m wondering what types of things other folks choose for convenience, and I’d love to hear from you. Please share yours below! It would be good to add to my list and to give other readers more ideas, too. So what shortcuts do you take?

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What a difference a haircut makes

May 20, 2019

I recently got a somewhat-drastic haircut, and was surprised by just how good it felt.

This wasn’t totally out of the blue. I had thought about cutting my hair super short for a while. I had it short many years ago, but since just before I got really sick I had grown it out, always having it somewhere between chin-length and almost shoulder-length. Recently I wanted to cut it but chickened out. Then a few weeks ago, as I pulled into the parking lot at SuperCuts (an inexpensive chain) it occurred to me that instead of a trim, I could do something different. I sat in the chair and asked the stylist I’d never met before to cut my hair really short. And she did! It came out even shorter than it had been a dozen years ago.

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Instead of my haircut, here’s a photo of an adorable furry dog cuddling with me.

I immediately loved it, but it was as I drove home that I questioned why I was downright ecstatic. I mean, it’s just a haircut, right? But it was more than that.

It was me making a conscious choice to change something about my body in a positive way, with no baggage attached. When was the last time I had done that?

Thanks to my chronic illnesses, I so often feel that I don’t have control of my body. A haircut is a small thing, but it’s still a thing I chose to do. And that feels good.


Insurance that won’t cover medication

May 10, 2019

I have always been financially independent, meaning I supported myself. I worked in nonprofit for my entire career, so I never earned a lot of money. Still, I lived frugally and made it work, while managing to save money. Then I became too sick to work. Suddenly, money became a big problem.

Social security, fuel assistance, and food stamps helped, but they weren’t enough. I was pulling money out of savings every month. Thankfully I had savings, and enough that I wasn’t on the verge of ruin, but not enough to last me indefinitely. I tried to work multiple times. Each time I increased my hours, I got sicker. Some weeks I could manage 5 hours of work. Some weeks 10 hours. But if I tried to work 10 hours per week for two weeks in a row, it was a disaster. Even 5 hours per week wasn’t sustainable over time.

Then last year, I got Section 8! (For those outside the U.S., Section 8 is a housing subsidy. These days, the wait list to get Section 8 can be 10 years or more, and the restrictions for using it are very strict. With this type of Section 8, you pay no more than 1/3 of your income on rent, and the government covers the rest.) I was in shock. I thought I would be on the waiting list for several more years, but out of the blue, I reached the top of the list. Finally, I could cover all of my basic expenses with my benefits! I would still have to take money out of savings if I wanted to go to the theater, eat dinner with friends, buy clothes, or pay for car repairs, but this was still a huge improvement. It lasted about a minute.

Less than two months later, I got kicked off of food stamps. They said I earned $20 per month over the limit. I had no idea where that number came from, because I wasn’t close to the limit. So I did the paperwork and sent it in. I got food stamps back, but the same month I started a new prescription. It has to be compounded, as probably all of my medications will have to be from now on. That’s the only way to get this particular medication without any corn or gluten in it, which is a medical necessity for me.

Unfortunately, Medicare doesn’t care that it’s a medical necessity; they refuse to cover compounds. At $150 per month, this is obviously not in my budget. I appeal and was denied. I found an amazing patient advocacy group that helped me with a second appeal at no cost. My patient advocate helped me in many ways and this time my appeal included a 1000 word letter about why I need this medication and how it helps me, a more thorough letter from my doctor, and more of my own medical records.

And I was denied. Again. I can continue to appeal but it won’t help. Compound medications by their very nature are not FDA approved, and Medicare won’t cover anything that isn’t FDA approved. So I’m stuck.

Again, the good news is that I can afford this. I have savings. The bad news is that savings only goes so far. And every time I need to add a new prescription (I will probably have another in the next month or so) it will most likely need to be compounded. The costs might vary, but it won’t be cheap.

I take a lot of supplements and visit a lot of medical professionals. I spend about $600 on healthcare despite having great insurance. I take only ONE prescription medication and yet my insurance won’t cover it, so now I need to increase my medical spending by 25% to cover this additional $150 per month.

For a few weeks I could cover my expenses without dipping into savings or having to ask my parents for money. It was glorious. If only Medicare worked the way it should, I would still be in that position. Instead, I am watching my savings slowly go down month after month and it’s terrifying. But I need this medication to live.

Now please excuse me, I need to go call in a refill of my medication.


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