Forgetting when pain was scary

November 13, 2017

A friend mentioned that it’s frightening to wake up in pain. I paused, not sure what she meant for a moment. Then I remembered back to when waking up in pain was scary. That feels so long ago.

Don’t get me wrong, sometimes it’s still scary. It’s just that that feeling has become rare. After all, when I’m in pain all day every day, why would it surprise me to be in pain at night?

My friend was referring to a different kind of pain. She is pregnant, and sometimes wakes up with horrendous leg cramps. Before the pregnancy, she only had pain the way most people do: if she injured herself. So this is unusual. And we humans often respond to the unusual with fear. It makes sense from a survival perspective. And pain is a bad thing – it’s telling us that something is wrong. So again, it’s natural to have a negative reaction to it.

The thing is, when you’re in pain all the time, your survival instinct learns that this isn’t a threat. You can’t be always worried that something is wrong because it will wear you out.

Occasionally I have a burst of scary pain in the middle of the night. Usually, it’s a new or uncommon pain, and that’s what makes it scary. More often, it’s my same old pains. At their usual levels, I sleep through the pain; I learned to do that when I was 17 years old and thoroughly exhausted from the sleepless nights.

When the pain gets worse, I often wake up, think “that sucks,” move to a less painful position (if possible,) and go right back to sleep. I’m aware of it, but I don’t think much of it. It’s not scary at all. Even when the pain is bad enough that I can’t get back to sleep for a while, I don’t feel fear. Annoyance, frustration, and sometimes anger for sure, but not fear.

It has been so long since pain itself has been scary, that I forget what it’s like. Now when pain scares me, it’s not the pain that I find frightening, but the unknown cause and the fear that it could last the rest of my life, as so many new pains have. Will this ever go away? Will it get worse? Will it stop me from doing things I love? Those are the fears. But when I know the cause and that it will end, there’s no fear. My body’s instinct has shut down when it comes to pain, and I wasn’t even aware of it happening.

It’s easy to see the many ways that non-chronically ill people don’t understand what we go through, but it’s also true that we don’t understand what they go through. I don’t want to diminish my friend’s experience simply because I am in pain more often and have learned to deal with it, because my pain comes with a bunch of other (arguably worse) symptoms, and because mine pain will never go away. Yes, I would rather be in her position, but that doesn’t make it easy for her. Her natural instincts are still intact, and possibly heightened because she is pregnant. She is dealing with changing hormones and a changing body. That doesn’t sound easy to me.

My point is simply that it’s easy to shrug off what others go through as being no big deal, but I still try hard to have sympathy and empathy for them, as much as possible. Just like I want others to have for me.

This conversation happened weeks ago, but it has stuck with me: the confusion I felt (people wake up feeling scared of pain?), the realization of how much my perspective has changed, my instinct to shrug off her situation, and the awareness that that would be a crappy thing to do. Writing this is my way of reminding myself to keep that awareness. Because everyone’s pain is a problem for them, and that’s something we can all relate to.


Going public is like coming out over and over

September 13, 2017

Once upon a time, no one knew I had health problems unless I told them. Ok, that’s not entirely true. There were signs. It’s just that most people didn’t pick up on that signs, or I could shrug them off as an injury or something. It was easy to lie.

Then I decided to write a book.* Now, when you Google my name, that book comes up. And it’s all about having chronic illnesses.

This has been such an interesting experience. It makes my journey public in a way it never was, because even though most people don’t Google my name, I know that they could. And that leads me to think and speak about my health in different ways.

Take last night, for example. I was giving a presentation in front of a group on a different topic entirely. Someone asked a question and I was answering it with a few examples. And then I mentioned medical stuff as a relevant example. There was was, in front of a small group, pointing at a screen, and looking completely healthy except for my knee braces. And I felt odd mentioning my health, but it was relevant. And I even said, “this is no secret – if you Google me, you’ll see the book I wrote on this topic.” And I saw some eyes move south to those knee braces.

It’s like coming out. I joined an online dating site a few months ago. I was taking a walk with a neighbor and she was asking me about it. We didn’t know each other well, but were friendly. She asked if I had met anyone and I said I’d met a couple interesting people. She asked about them, and as I mentioned the man, everything was normal. When I mentioned the woman, I saw her hesitate. I watched her brain churn as she processed that bit, and then we moved on. With other people, where there’s context, I might directly say that I’m bisexual. But no matter what, if the topic is going to come up, I need to come out over and over again, because whether I’m dating or single, no one will know I’m bi if I don’t mention it.

And every time, I wonder how the other person will react. Will they be accepting? Will they be jerks? Will they ask the same old tired questions?

Just like mention my health problems. Every time, it’s necessary to specify what I’m talking about. Every time, I wonder how they will react. Will they be accepting? Will they be jerks? Will they ask the same old tired questions?

Sometimes I want to wear a sign on my head, or print business cards to hand out: YES, I HAVE CHRONIC ILLNESSES AND NO, THE DETAILS ARE NOT YOUR BUSINESS. Except that now, with the book, some of the details are out there. So they could be your business. Still, it doesn’t mean I want to talk about it all the damn time.

But you see, there’s also the part we don’t usually think about: it’s freeing! Every time I start to question whether or not to mention something, I remember, it’s out there anyway, so why not talk about it? Is it ok to share this? Might as well. Is this a secret? Apparently, not any more.

Again, it’s like coming out. I don’t have to watch my pronouns anymore. I can just speak about past loves and lovers like anyone else would. Sure, I have to use my judgement for safety. Yes, some people will be jerks, but there aren’t any secrets.

That isn’t to say I don’t have limitations. I still write things on this blog, for example, that I wouldn’t say publicly. There’s definitely something to be said for having a pseudonym. Still, to be able to speak publicly and not question myself constantly is HUGE!

It also means more people in my life know about my health issues. I’m more open about it on Facebook because, after all, they see me promoting my book. There’s no question about it at all anymore.

Coming out about orientation, health, or anything else is a personal choice. This isn’t something I would have done even just a few years ago. I am so glad I have. For me, right now, this was definitely the right move. If it’s not right for you, though, that’s cool, too. You have to do what works for you.

Have you been public about your health stuff? How has that gone for you? I’d love to hear about it in the comments!

*It’s frustrating that I can’t tell you what the book is. I want to so badly, but that would defeat the purpose of having a pseudonym here.


Have you called your senator today?

June 29, 2017

HELP!

In the chronic illness community, there seem to be two groups of people:

  • People in the U.S. who are terrified of losing their healthcare or of it becoming completely unaffordable.
  • People outside the U.S. who are wondering what the hell is wrong with us.

These are some scary times.

If you don’t know what’s going on, here’s the basic summary. Our political system has become incredibly divisive. It’s been divisive for a long time, but there are no longer congresspeople working with folks from the other party. Politicians go out of their way to hurt the other part just for the sake of hurting them. Even if politicians from different parties agree with each other in private, they won’t do it in public.

When Obama became president, the Republicans vowed to do whatever it took to prevent him from being reelected. But he was reelected. Still, they could destroy everything he had accomplished. For 7 years they talked about repealed the healthcare plan he put into place. They talked big. And then the day came when they had to actually do what they’d said.

So now here we are with a Republican-majority congress and a Republican president. They have no excuse for not repealing Obama’s healthcare plan. The thing is, they suddenly realized that wasn’t so easy to do. People like it! They use it and rely on it! They need it.

But after talking big, the Republicans can’t just say, “Oops, turns out we can’t come up with something better that will make our richest supporters happy, so we’ll just keep what we’ve got.” No, they have to get rid of it. And the plans they have been coming up with instead are cruel.

Yes, cruel. That’s no exaggeration. The House’s plan would cause 23 million people to lose health insurance. The Senate’s plan would cause 22 million people to lose health insurance. Preexisting conditions could cause your rates to skyrocket. A “preexisting condition” could be anything from cancer to lupus to migraines to pregnancy.

The Senate’s plan would remove access to free birth control, abortions, and maternity coverage. That’s right. So you won’t have any monetary help avoiding pregnancy, ending a pregnancy, or getting medical treatment during a pregnancy, never mind actually giving birth to a baby. Cruel.

Both plans cut billions – yes, BILLIONS – of dollars from Medicaid. Medicaid is the government-run healthcare program for the poor and disabled. You know, the folks who most need the help.

As for “regular” folks with jobs and steady incomes, they’re safe, right? Not really. Predictions are that their premiums, deductibles, and co-pays will go up, even while the covered services (like contraception, abortion, and maternity care) are reduced.

So who benefits? The rich will get huge tax breaks. Insurance companies will also save money.

Um…. Yeah, I’m usually speechless at this point. For about a minute. Then I start yelling again.

Remember, these bills are hugely unpopular. But they can still pass. Because the Republicans would rather do something unpopular than nothing at all.

As for me, I currently have two different health insurances. My primary insurance covers 80% of each bill and the secondary insurance – Medicaid – covers the other 20%. If any of these bills pass, I will likely be able to keep the primary insurance, but there will be limits placed on it, so it won’t cover as much as it does right now. There aren’t any details yet. I don’t know if it will still cover the CPAP-type machine that I need for my sleep apnea, the many doctors’ visits, the blood tests, or the MRIs.  I would lose the secondary insurance. I might or might have access to other secondary insurances that I could pay for myself. Right now, those cost about $250 per month – money I don’t have available. But that’s right now, and those prices will go up under these new Republican plans. How would I pay for it?

Shit.

This is bad. Horrible. Catastrophic.

Cruel.

So what can you do? I’m so glad you asked! Here’s what you can do:

  • If you are in the U.S., call your Senators! Tell them to vote against these bills! Tell them you want to keep the Affordable Care Act just the way it is. If you can’t call, send an email. Their contact information is right here: https://www.senate.gov/senators/contact/
  • If you are in the U.S., call other Senators! There are many who are on the fence, and we need them with us on this!
  • No matter where you are, ask your friends in the U.S. to call their Senators!
  • Post about this on social media. We need awareness! Too many people don’t realize what’s happening or how it might affect them. And that’s a problem. On the other hand, if the 22 MILLION – that’s 22,000,000 people! – all called their Senators, and each got a friend and/or family member to call also, there’s no way the Senators would vote for this. They wouldn’t want to risk losing the next election, after all.
  • [Edited to add on 7/5/17:] Attend any town halls that you can and make your voice heard! These town halls have a HUGE impact, not only in the media, but on the senators themselves. If they get a lot of feedback at these town halls, they might very well switch their votes to be against this heinous bill.

I’m sure my Facebook friends would be sick of my myriad posts on this subject if so many of them weren’t also concerned. Many are in much worse situations than me. Some are just as disabled, but will lose ALL of their health insurance coverage if this passes, and they don’t have any savings to manage without it.

Remember, 22 million people will lose health insurance if these bills pass. But how many of those 22 million will survive? Because people will die. That is a fact. And while I have no doubt that history will prove me right on this matter, I don’t want to be right. I want to be alive. How about you?

What are you waiting for? If you feel up to it, take 5 minutes RIGHT NOW to call your Senators, call other Senators, ask your family and friends to call Senators, and post on social media. Because unless we take action, millions of people will lose access to healthcare.


There’s no such thing as a quick swim anymore

June 26, 2017
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I wouldn’t mind being able to do this!

When I moved to a new apartment a few months back, a lot of friends were excited for me that I now had a pool. They were a lot more excited than I was.

I lived in a building in a pool once before. It was about 15 years ago. I was living in sunny Los Angeles, where pools are more common, and I was in much better health. I swam regularly during the months when I had less work (and more time.) It was lovely!

But this is not that. This is different. My new friends in the building often invite me for a quick swim. They have no idea what that really means for me.

  • Driving to the pool seems silly, but it’s 1/3 mile away, which is sometimes too far to walk, especially in the summer air.
  • If it’s too cool, no one wants to swim.
  • If it’s too hot, I can’t be outside, even in the pool.
  • If it’s too humid, I can’t be outside, even in the pool.
  • I must bring a lot of water and snacks, even for a “quick” swim, to stay hydrated and keep my strength up.
  • I will be in a lot of pain afterwards.
  • I will be in a lot of pain the next day.
  • I will be exhausted the next day.
  • I might have to cancel all of my plans for the next day so that I can rest and recover.
  • I won’t be able to cook that night, so I need to have leftovers available for dinner.
  • Obviously I can’t swim if I have plans later in the day, because I’ll need to rest.
  • I need to take extra meds if I’m going to swim, which means I have to know about swimming far enough in advance to take the meds.

There’s more, of course, but this gives folks a good idea of why swimming for me isn’t the relaxing, care-free, spontaneous, fun activity that it is for my neighbors. There are many things in our lives that get ridiculously more complicated, painful, and exhausting once chronic illness enters the picture, like grocery shopping. The big difference is that swimming is completely optional. Sure, skipping the pool hurts my social life a bit. But it helps my LIFE life a lot!

I’m not saying I won’t go swimming at all this summer. Only that the logistics have to be just right. I need to know the right people will be there so I’ll have, I need to be feeling good that day and not have other plans in the next day and a half, the weather has to be just right.

It’s not easy. But then, few things are when chronic illness is involved. So yes, I will be the “spoil sport” who skips the pool. I can live with that. Because I’ll live better for it.