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 For 7 years they talked about repealed the healthcare plan he put into place.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.

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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.


When the best medicine is taking care of someone else

June 17, 2017

Today started out rough. I felt like I did too much on Wednesday. Thursday I did less, but probably should have stayed home to rest. By Friday I had no choice but to spend all day at home in my pajamas, watching tv and crocheting. So this morning, I was glad to feel better than yesterday, but I still didn’t feel great. And yet, I didn’t want to cancel all of my plans.

My evening plans had to be cancelled. I knew I had to get to bed early. But the afternoon plans – a friend coming over who I already cancelled on at the last minute last time – I didn’t want to cancel again. So I rallied and got dressed and waited for her to arrive, knowing it would be a quiet day and I wouldn’t have to leave my apartment.

When she came, she had the start of a migraine. Unfortunately, she had switched purses and didn’t have the over-the-counter medication that helps her. I didn’t have it either. I offered to go to the store, but she said no. So I messaged a bunch of neighbors. No luck.

I got her a cold pack for her head. I made her tea. I shut off the lights. Eventually, I insisted on going to the store for her. So much for staying home. But the funny thing was, I felt ok.

After taking the med she slowly started to feel better. I got her food and kept on eye on her, making sure she was doing ok.

I have noticed this kind of thing before. Obviously, there are times when I’m not at all able to care for someone else, or when caring for someone else will make me feel worse. But then there are other times, times like today. Times when I’m not doing great, but I’m not doing horribly either, and taking care of someone else gets me outside of my own head, distracted from my own condition, and eventually I even begin to feel better.

I feel bad my friend had a migraine. I wish that hadn’t happened. Still, it was a good reminder for me:

Sometimes the best medicine is taking care of someone else.


The importance of community

June 15, 2017

Last week I saw my primary care doctor for my annual exam. At the end of the visit, he brought up the fact that I was on disability. He said that only 5% of people ever manage to get off of disability benefits. He said that it was important to find activities to keep busy and productive. Then he talked about the isolation that can come when you don’t have a job to get you out of the house, and you don’t feel up to going out a lot. He said it was important to have community, and it’s important to make an effort to create that community.

He’s so right. (And I love that he’s having this conversation with his patients!)

I assured him that I have community. If he only knew.

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I have worked hard to make friends and build community. It doesn’t come easily or naturally to me. I’m an introvert by nature, and my health issues have made me even more of an introvert. Not being able to go out often doesn’t help either. But it’s important to me to have friends and community in my life, so I made it happen.

For me, the key has been to go for quality instead of quantity. I don’t have hundreds of friends, but the ones I have are good ones. Acquaintances are often happy to help me because they see me helping others.

That’s why when I needed to borrow a wheelchair recently, I had 3 offers to lend me one, plus 2 other folks suggested local organizations that lend out medical equipment for free. When I needed someone to push that wheelchair, I was able to post on Facebook and get some offers from friends and also from acquaintances I barely know. Because I have that community.

Sometimes it’s hard. I put myself out there, which means I’m often asked for help and I need to say no. Thankfully, most people understand my limitations. And they appreciate it all the more when I volunteer. A friend is going out of town and leaving her dog at home, with the dog walker coming by many times each day to walk him. It’s not perfect, but it’s the best they can do. I said that if she gives me her key (which I am getting today), I’ll pop in to visit him a couple times, just so he has someone to cuddle with. She was amazed. To me, this is just a nice thing to do for a friend. I won’t go by every day, but on the days I’m in the neighborhood, I’ll bring a book and read while her dog gets some important snuggles. It won’t be the first time I’ve done this for a traveling friend. (And let’s be honest, while it’s an inconvenience, I certainly won’t hate doggie snuggles!)

I belong to a chronic pain support group. Having people who really understand the struggle makes such a difference. It was one of those members who ultimately lent me her wheelchair, and even put it in the car for me because I couldn’t. I do a lot for that group, too. I created and run a Facebook group so we can communicate easily between meetings. I do other behind-the-scenes tasks, too. It doesn’t take much time, but it helps people. And they notice, and want to help me in return.

It’s so easy to become self-involved these days, and more so if you’re in pain or fatigued or dealing with other symptoms all day every day. Believe me, I know. And so many people lose their friends and their families when they become sick. So I am hugely grateful for the incredible people in my life. My parents and other relatives are super supportive, my childhood friends have stood by me and help when they can, and newer friends are ready to step up and help. Acquaintances do more than I would have expected. Even strangers offer to help, thanks to all of my work in the chronic illness community online (both this anonymous blog and a lot of work under my real name.) I am so fortunate that I began building that community long before I needed it, and that I still have it.

I think we all need to heed my doctor’s words and find a way to build community. It will look different for everyone. Some people will reach out to friends, others will go to events through meetup.com (I’ve built some great community that way, too!) and others will do it all online. Whatever it looks like for you, I hope you are able to build the community that you need and that will support you, just as you will support them whenever you can.

What about you? How do you build community? Please share in the comments so we can learn from each other!


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