Archive for March, 2016

There are a lot of lists of this nature on the internet, but I want to do my own.

The Cost

This is one of the main things that inspired me to want to make this post.┬áBeing chronically ill is expensive. Between the doctor appointments, regular medical tests, and prescription medications, plus the non-prescriptions medications. I’m not even talking here about the hidden costs like missing work because of being ill.

It’s not just how much it costs, but also the consistency of it. This comes up a lot for me in discussions with people about certain medical costs, and I realize that we look at things in a very fundamentally different way based on our health backgrounds. I find this with family a lot, who know about my chronic illnesses and medical expenses, and yet they still often seem to have trouble understanding that I know these costs will exist. It’s not 100% predictable, but I can come up with good estimates of how much it costs me monthly.

For example, at my new job I had the option of putting money into a flex spending account for healthcare costs, that money can only be used for healthcare expenses but is not taxable. It used to be that you couldn’t roll over the money year to year, so it was use it or lose it, but for mine I can roll over up to $500 if I don’t use it all. I don’t know that it will end up making a big difference tax wise for me because I don’t make that much money, but I figure I might as well get some benefit from it knowing I will be spending a lot of money on medical costs. I have $50 per biweekly pay put into my flex spending account, which is actually less than what my yearly medical costs are going to be so I will probably end up upping that in the future.

Where I’m going with this though- I have had a number of conversations with my mom about this because she is always worried I’m going to lose money with it because what if I don’t spend it all? I have to remind her that there is no question for me about if it’s going to get used. For people who are generally healthy these things are pretty variable. Maybe you get sick and see a doctor maybe you don’t. Maybe you have to have extensive tests done and hit your deductible, but unless something goes wrong you won’t. For me, there is some question to some of it, if things go bad and I end up in the ER several times again- that’s not a planned expense. But I know I have doctor appointments on average once ever couple months even when things are normal. I’m supposed to have regular blood work done because of the meds I’m on which means I always end up hitting my deductible. I have medications I take every month that is a predictable cost. There is no question, I will spend more than the $1300 that goes into my flex spending account during the course of the year.

Taking medications is not bad

That I take a lot of prescriptions medications is scary to a lot of generally healthy people. Aren’t I worried about them? Have I talked to my doctor about trying to take less? What about side effects?

I don’t take these medications for fun, I take them because I need them. Can side effects be scary? Yes! It’s also scary that doctors don’t always pay attention to interactions or notify you of possible side effects. I was on one medication for years before being informed that oh yeah, kidney stones are a known side effect of them, and that’s why you keep getting kidney stones. And actually, that only came up because I discovered that information online myself and brought it up with my doctor. Because of this I try to make sure I am educated about my medications and use to check interactions to double check if my doctor and pharmacist miss anything important or scary.

It’s also scary that medications are not always well tested on people like me before being approved for use. The medical industry has a long history of testing medications on some people, specifically white men, and assuming that those results apply to all other people just the same.

But what I’m actually more concerned about and scared of is not having any medications and being unable to function. I’m afraid of more serious medical problems resulting from not treating my illnesses.

I take my medications because I need them, not for fun.

What being “tired” really means

This one is specific to me and my experience, but I hate when people who do not have chronic illnesses act like they understand me being “tired” because they didn’t sleep well last night either. For me, being tired does not feel like just not getting good sleep.

Now part of this is that I do not in my daily language distinguish between sleepiness and fatigue, though the two are different things. Different things that I often experience at the same time though. When I say I feel tired, I usually mean both sleepiness and fatigue.

Part of being tired for me is sleepiness. It is a need for more sleep than generally healthy people normally need. It is struggling just to stay awake through the day.

It’s also fatigue. Which is much harder to explain if you’ve never experienced it. It’s a feeling in my body, in my muscles, of having no energy to do anything. It also hurts. Which is something that is hard to explain, but there is a pain that goes with severe fatigue. Being tired often means being so tired I physically hurt for me.

The connection between physical and mental health (that goes both ways)

Talking about fatigue and pain brings me to the connection between physical and mental health. My physical health causes mental health difficulties for me. But there is mutual feedback between the two in a very negative way. And trying to figure out which is which is sometimes not possible. I am exhausted and that causes me to start feeling depressed, and my depressed thinking is specifically related to my physical illness, feeling worthless because I can’t do the things I need to do, et cetera, but we also know depression can cause physical symptoms including pain. Knowing exactly which is physical and which is mental is not possible, the two are woven together to tightly.

It doesn’t go away

This is one I’ve said many times before, but I’ll say it again- one of the hardest parts of chronic illnesses is the fact that it doesn’t go away. I am tired of being sick and tired all the time but I can’t change that. It’s impossible to convey what it feels like to always feel so sick and in pain knowing it’s not going to pass and get better.