The things we do for our health

February 26, 2018

As I sat on the bathroom floor scooping poop into a plastic cup with a wooden stick 2 hours ago, I thought about how some people can go their entire lives without ever having to do this. Lucky them. I’m not so lucky.

I really really really didn’t want to do a stool test, but much more than that, I really really really couldn’t stand to keep having these episodes. I can handle the gas, the bloating, the constipation, and the diarrhea. I don’t love them, but I can handle them. But I can’t handle the nausea. It just does me in emotionally.

I have had these kinds of episodes since my teens. When I removed gluten and corn from my diet in my early 30s, they became much less frequent. Instead of 2-4 times a week they were *only* 2-4 times per month. Still, that’s far too often. The symptoms changed, too. Some got worse and some got better. And over time, I accepted it, to a certain degree. At least it was less often, right?

The thing is, the nausea, the fatigue, the rest of the symptoms all come on together. I never know when it will happen. Is it my diet? One night I feel fine and another I’m a mess, even when I ate the same thing both times. Maybe it’s something else? I have tried diets, so it’s time for the next step.

Someone suggested this particular test to me. I asked my doctor and was shocked to learn that insurance will actually cover the cost (a rarity for many of the tests I ask for.) His office gave me the kit, and I put it off.

First I needed to do an adrenal test – the fatigue was a more concerning symptom. Mentally and emotionally, I could only handle doing one at a time. It took a few weeks before I could schedule that test, since I had to change some things about my medications to prepare for it.

I gave myself a week, then decided to do the stool test. I read the instructions and learned I had to be off probiotics for 2 weeks before the test. I stopped taking probiotics. 2 weeks later, I was sick. I waited. I finally felt better but my schedule was a bit busy. I knew I needed to be home and not rushed for this. My schedule cleared and I went to take the test. I read the instructions again and saw that I had to be off another of my supplements for 2 days. I went off those. I felt sick again. Then if I did the test, I would finish on a Saturday, and it has to be mailed Monday-Friday, within 24 hours of finishing. I waited a couple more days.

FINALLY it was time! I was nervous and not wanting to do it, but I did it. Because I had to. Because I need answers. Because each time I have one of those episodes, I start to wonder if I would be better off dead. The only times I feel at all suicidal are doing those episodes. I don’t know why. They last for hours that feel like weeks, but never more than a few hours. The pain can be so much worse and last for so much longer, but it never makes me feel that way. These episodes have to stop.

So I did the test. It was a 3 day test. For 3 nights I had stress dreams about the test. The first day I realized it wasn’t fun, but not nearly as bad as I’d expected. But still, I had the dreams. They woke me up at 5:15am today. I want to believe it was worth it.

I finished the test just a couple hours ago. The samples are sitting in my refrigerator (carefully packaged, of course) and ready to be mailed when go out this afternoon. And then I wait. And wait. And wait. It will only take a few weeks to get the results, but it will feel like so much longer.

After many months of procrastination, then another 6 weeks of mostly legitimate delays after I received the kit, I finally feel SO CLOSE to potentially having some answers. I don’t want to hear I have parasites or infections to deal with, but those might be better than a lifetime of these episodes that make me literally want to die, that I can’t predict, and that continue to get worse over time.

So yes, I scooped my own poop into plastic containers multiple times. That’s something most people never even consider doing. But maybe, hopefully, it was worth it.

 

Leave a Comment » | Expectations, Frustration, Gastrointestinal, Healthcare, Rants, Symptoms, Unpredictable | Permalink
Posted by chronicrants

Wanting and despising pity

February 17, 2018

I’ve been off my feet for the last week, more or less. Some days I could barely hobble around my apartment, even with crutches or a cane. Other days I could walk around the apartment fine, but putting on shoes was incredibly painful. This doesn’t happen often, but it’s happened many times over the last 13 years.

The difference is that this time, there are new people in my life who aren’t familiar with it.

More than once, a neighbor, a friend, and my new girlfriend all noticed me using crutches or limping, and they offered sympathy. Some were clearly pitying me as well.

Most days I despise pity. Instead of pity, I wish people would offer sympathy. And I wish they would do things to help. Hold open a door. Don’t come near me when they’re sick. Call their legislators and ask them to vote against the new bill that guts the Americans with Disabilities Act (ADA). (Seriously, call them! The bill is described here and you can find your senator’s contact info here.) Those things are helpful. But not pity. Pity sucks, and it’s dehumanizing. It means they’re seeing me as a set of symptoms instead of as a whole person.

And let’s be honest, we are taught by society that we shouldn’t like pity. We should be strong and resilient, blah blah blah.

But some days, that’s just how I feel. Some days, life sucks and I want more than sympathy, I want pity! Like when my feet hurt so badly I can barely hobble to the bathroom. Like when the pain is so bad, I can’t even wear socks. Like when I have to cancel plans so that I can stay home and feel like crap. Sympathy is good. Usually that’s enough. But every now and then, when I’m feeling especially sorry for myself, I also want pity from others.

Now here’s the thing: I talk to people about being in pain. Because I’m in pain. Every day. It’s a part of my life. I don’t dwell on it, and I only complain on the worse days, but I mention it a lot. And sometimes, people offer pity, even though that’s not at all what I’m looking for. And I hate it.

Then again, sometimes I bring it up because I DO want some sort of acknowledgement. I hate to admit it, but it’s true. Sometimes, I want people to know I’m in pain, to feel bad about it, to offer me some sympathy, and maybe to offer help with something I struggle with.

It’s a hard line to toe. I want to be able to say that I never want to mention it, I want it to be ignored, I want to be treated like everyone else. I want to say that, but it’s not true. Because the truth is, I’m human. And sometimes we humans want a little sympathy and support. Some days we even want pity!

Like I said before, society tells us we shouldn’t want pity. We should be strong and inspirational. Others should be able to point to us and say, “Look how amazing she is! If she can do what she does despite her health problems, I have no reason to complain.” Talk about dehumanizing! I’m a real person. I’m a whole person. I laugh and cry, feel optimistic and pessimistic, go out with friends and stay home feeling sick, do laundry and errands and cooking and other mundane chores. I’m more than a set of symptoms. I have feelings.

And yes, sometimes those feelings lead me to wanting pity.

I’m not proud of that, but I’m not going to be ashamed of it anymore, either.

I don’t live in the land of pity. I know that would not be healthy for me. But if a few days here and there I feel this way, what’s so wrong with that? I can’t compel someone to pity me. More than that, I know I’d be pissed if a bunch of people started doing it. But if for a few days I’d like my mother or a friend to pity me a bit, to offer condolences for what I’m dealing with, then so be it!

I won’t ask for pity. And most days I will still despise it. But if every now and then I want it, that’s ok.

Is it just me? Do you ever feel this way? Do you feel guilty for wanting pity? How do you handle it? Please share in the comments!

Leave a Comment » | Expectations, Isolation, Limitations, Pain, Raves, Relationships: Family & Friends & Dating & Sex, Support, Symptoms | Permalink
Posted by chronicrants

The circular reasoning of spending money to get off benefits

February 4, 2018

I was always one of the few people who didn’t stress about money. I was lucky.

My parents raised me in a comfortable home, where we never worried about the basics. We didn’t take a lot of fancy trips, and my mom didn’t wear a lot of expensive jewelry. My parents bought new cars like Camrys – new, but not luxury. I got an allowance every week. It wasn’t huge, I saved it. I saved a lot. I saved my babysitting money. I saved my summer job money. I spent some too, but I saved more than I spent. By the time I went to college, I had decent savings.

My parents paid for college. I got a fellowship for my first year of grad school, then worked two jobs to pay for the next year. I never had any debt. I worked in nonprofit, so I didn’t earn a lot, but I lived inexpensively for the most part, and it all worked out.

Until I became too sick to work. That changed everything.

Suddenly, I worried about every dollar I spent because I knew I couldn’t earn more. I also knew that my benefits didn’t quite cover my expenses. I was taking money out of savings to make up the difference, and how long could that last? Thank goodness for my savings!

And then my health started to improve. I felt I could work a little bit. Not enough for an office job. Not enough for a typical work-from-home job. I couldn’t predict which days I would feel up to working. Or which weeks I wouldn’t be able to work at all. So I started my own business.

Things didn’t go great. I made some money, but nothing consistent. Worse, there was no way to earn more without putting in more hours, and that was impossible. I burned out fast.

I decided it was time to try a different type of business. I had thought about it a couple years ago, but discounted it for a few reasons. For one, it seemed less fun. For another, it required taking a decent amount of money out of savings and risking losing it. But now, I don’t have a lot of options, so I have to try.

Even more than risking that money on the business, I’m going to hire a coach! And the coach isn’t cheap. Still, if I’m going to do it, I should do it right, right?

This is a decent amount of money coming out of my savings. I don’t think I would have loved it at any time in my life, but right now especially, it makes me very nervous. I need this money!

On the other hand, what am I risking? This money in my savings could cover me for  year, as long as I have my other benefits. But for various reasons, I am about to lose some of my benefits (fuel assistance, utility assistance, food stamps/SNAP.) So this money would cover me for less than a year, in addition to social security. I could lose a year’s worth of non-rent expenses.

That’s the risk. But what about the reward? If this works, I could earn enough to get off of benefits altogether! I could support myself without having to work full time. I would do the work from home (or from anywhere, as long as I have a laptop and internet connection) and make a full time income. It would be amazing!

That’s what I’m holding on to. That hope that maybe, just maybe, this could work.

I know it’s a long shot. Very few people manage to get off of benefits. I could even earn enough to lose my benefits without earning enough to support myself, which is the worst-case scenario (and the one I’m going to be careful to avoid.)

I am supposed to pay the coach today, and I’m nervous as hell. I keep holding off. It’s A LOT of money. But on the other hand, it isn’t that much money. And there’s the rub. If I was working, it wouldn’t feel like all that much. Yes, it’s a lot (thousands of dollars), but I’d be earning, and I don’t have debt. It only feels like so much because I can’t earn more. But ironically, I need to spend it so that I have a chance at earning more, even though it’s my fear of not being able to earn it back that’s stopping me from spending it in the first place.

I have been wrestling with this decision for a week. Every time I convince myself to do it, I chicken out. But tomorrow is it. The final deadline. Because at some point, the coach needs to fill in this slot in her schedule, and I need to sleep better at night without worrying about this.

And who knows? Maybe, just maybe, it could work…..

Do you have these same kinds of feelings about spending money, even when it feels necessary or beneficial in the long run? How do you handle the complicated emotions it brings up?

P.S. This isn’t a get-rich-quick scheme. My goal would be to earn back everything I spent by the end of this year, to make a profit next year, and to hopefully be off benefits the year after that. If this works, I’ll be happy to tell you all about it.

Leave a Comment » | Decisions, Expectations, Frustration, Job, Limitations, Rants | Permalink
Posted by chronicrants

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