Can I trust them?

July 11, 2017

Two of my strongest feelings are conflicting with each other, and I’m not sure what to do.

I have a lot of trust issues when it comes to medical professionals. When you look at my history, it’s not hard to see why.

I also have very passionate feelings about medical research. I feel it’s so important to focus more on the “less profitable” health issues. Money should not be the deciding factor! And yes, this is a bit selfish, because I want to see new treatments come to market for conditions that I have, and for conditions that my friends have, too. Not to mention the millions of other folks out there.

There is a group studying the rare form of sleep apnea my father and I have. My doctor wants my father and me to participate. Not only would we each provide useful data on our own, but we’re first degree relatives, which would be very useful for the researchers! My father has already sent in the forms. I have been holding onto them for over a month. I just can’t seem to sign.

The work is legitimate. The researchers are legitimate. I am not worried about giving blood samples or doing sleep studies. There is no logical reason to not do this.

But I can’t seem to sign the papers. I am worried about how the information might be used. What if it’s not kept confidential like they say it will be? Of course, this could be a risk with my regular medical records, too, but those feel more necessary. This is entirely optional.

I should do it. I want to further research. It’s my responsibility. How can I continue to rail against the system when I refuse to participate in it? I want to do this. I honestly do want to do it.

If only I could calm my fears.

What would you do? Have you participated in research at all? If so, how do you feel about it?


Oh summer, why must you torture me?

July 5, 2017

It is a bright, sunny, not-too-hot day. I should be taking a walk outside. Sitting in the sun. Enjoying the weather. Instead I had to cancel plans I was looking forward to so that I can sit inside and feel lousy. Again.

I don’t know what it is about summer. I just know that it kicks my ass every year. This year is actually not as bad as usual. I have been in better health, and I assume that’s why. Instead of feeling crappy starting in March or April, I made it to June! Of course, we had an unusually cool May, but still….

But not it’s July and I feel like I’ve been hit by a truck. I increased my adrenal supplement for a few days and that helped, but when I lowered it, the fatigue rushed back. I’m seeing my naturopath in the morning and I have a feeling I should raise that supplement dose for the rest of the summer. It sucks, because after many years, we had finally just lowered it a few months ago! I was so happy to lower that supplement. It’s not something I should be on permanently. The idea is to keep lowering the dose until my adrenals can do the job themselves. We want to avoid long term dependency.

So much for that.

Yesterday was a lovely day. It was sunny and not too hot – perfect swimming weather. Plus it was a holiday, so most of my neighbors were away. I had no plans at all. The perfect day to finally try out my building’s pool. But there was no way. I felt like shit. I texted my friends that I wouldn’t be joining them, and I spent all day in pajamas. I watched many hours of tv. I didn’t do the cooking I wanted to do. Or the laundry. Or the putting away of clutter. Instead I watched tv and crocheted and knitted. Thank goodness for my sedentary yarn hobbies!

Being stuck at home is nothing new. I can handle it. The hard part is that the summer is when everyone else is out and about! All winter I felt better, but no one wanted to take walks in the snow with me. And I don’t blame them. But now they’re all out doing things, and I can’t join in. I’m stuck inside. And I like being out in the sun! I love it, actually. But on the hot days it’s impossible and on the not-too-hot days I usually don’t have the energy for it.

My new apartment has a patio. I’m hoping to spend at least a few minutes sitting out there later. At least I would get some fresh air.

But taking a walk, going for a swim, or keeping my date for tonight? No go. Because even on a not-too-hot, not-too-sunny, not-too-anything-bad day like this, I still feel like crap.

Maybe one day my immune system will be able to handle summer. But not today.


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.