Time for more

One thing that everyone with unrelenting health issues knows is, it’s exhausting. Constantly struggling to manage better, trying new treatment options, diets, supplements, exercises… There’s always something, and it’s both tiring and tiresome.

Yes, I get completely bored with my own issues.

Which is why I haven’t posted here since January. I was tired. I was uninterested. I’ve written other things, but not what I usually cover. That’s no way to run a blog, so I’ll be expanding my subject. It’s still the same old rat, we’re just expanding the study.

Cold things only.

The other day a friend of mine posted to Facebook and used the hashtag #coldthingsonly.

I had a moment of profound and overwhelming empathy. Oh, my friend, I wish you weren’t there. And then a moment of “I thought it was only me, I’m not alone.”

#coldthingsonly is about running out of spoons before the day’s work is done. It means you had enough energy to go to the store (or no choice) but you used up all the energy you had shopping and when you get home, you hurt too much, or don’t have the energy to bring in all the groceries. Just the cold things. The rest will just have to stay in the car until you get back to them. Or urgently need them. Or if you’re very fortunate someone in your life will bring them in for you.

Because, remember, bringing in the cold things isn’t the end of the chore. You have to have the energy to put things away once you’re all in. This is one of the things I know normally healthy people don’t really think about.

Is it selfish to have a moment of comfort because you aren’t the only one? It’s a hard mental place. I don’t want my friends to suffer. I don’t want others to be in pain or exhausted. But there is a small comfort from knowing that someone else can viscerally understand what your situation is. What ever it is.

I’ve got your back my friend.

 

Getting it done.

I don’t much care for exercise. I never really have.

I hear people say how invigorated they are after a run, or how their body just craves movement after a long day.

I am baffled. I have never, ever felt like that. Not even as a child. Maybe when I was very small, before conscious memory, but most of my childhood involved sneaking around until I could find a quiet place to read my book, so I’m doubtful.

But the reality is, getting exercise is the only real way to keep your muscles strong and responsive, and to keep aging joints loose and as mobile as they’re going to get. Now there are lots of ways to exercise. Dancing is great exercise. Hiking, biking, walking the dog. If you can find something you enjoy, absolutely do that.

I’ve never been able to find something I really enjoy. So I’ve settled for maximum result with minimal pain. Both figurative and literal. Iron will now sees me in the local rec center pool for mornings a week. I have to work hard not to resent it. It feels like it takes up so much time for other, more interesting things I could be doing.

I  can’t read or write in the pool.

It does do the job though. I walk in the shallow end. Buoyancy takes the weight off my knees, but moving the water adds difficulty and builds strength. Adding floats lets me bring my arms in on the action. I’m there with a collection of regulars, most of whom are older than me, but we’re all friendly. I’ve even made some good friends in the pool.

I was grateful during some recent travel that I’ve been putting in the effort. I was able to navigate long airport hallways and getting in an out of small seats much more easily than this time last year.

Me and my creaky knees will see you in a pool then.

It’s all in the incantation

 

When I went to see my sleep specialist, he did 2 things. He gave me a great new med that seems to have fixed my restless leg. And he referred me to another sleep study.

The new drug works great. Restless leg is basically a misfire in the brain, and the drug stops that. It’s lovely. My husband reports that he no longer sees me rhythmically twitching when he comes to bed. This is excellent. Not only am I sleeping better, but my knees are much happier when they aren’t running marathons all night. Who knew.

The sleeps study. Well, that’s the reason for the Harry Potter clip. Because in dealing with insurance, it’s all about getting the incantation correct, and I guess we didn’t. My rejection letter was pretty ridiculous. It said that we had failed to prove that my daytime sleepiness wasn’t from a more common cause like sleep apnea. Even though they already paid for the study that clearly found restless leg and no sleep apnea at all. So I guess they didn’t even bother to read my chart before they declined.

It’s appalling really. We have excellent insurance. And yet it’s a darn good thing I don’t have a traditional day job because I have spent hours in the last year getting various issues sorted that should have been covered, but I had to argue about it. I even have a company-supplied advocate who helps me with these arguments.

Our system is so very, very broken. Excellent insurance should not still require me to fight for necessary tests and justify things  with reams and reams of paperwork. I’m grateful, but disheartened.

Scary things.

I think taking beautiful boudoir pictures of a plus sized woman and projecting them on the streets of NY is probably a pretty scary thing to do. There is a short video in the article that I recommend watching. I couldn’t get it to embed here, silly wordpress.

I am gratified to see that she got a lot of very positive comments on both her bravery and her beauty. I think this might just indicate a bit of a shift in society. Maybe it’s a shift underground, and only those who are part of it can see it, but success of things like her art, and model Tess Holliday are very encouraging to me. I’d love to see a world where people can be people, and not card board cutouts of conformity.

As much as I’d like to think it’s 100% about my own brand of sexy, I know that this says something much larger: Clearly, people want to see more images of plus-size women in the mainstream media. They want to see more realistic representations, which includes sexy ones. Here’s hoping the media takes note.

When all the right things are still wrong.

After beloved husband had his cardiac bypass, he was ordered to go on a low fat diet. Fair enough. We adjusted our long time low carb ways according to the doctors specifications. He has a food tracker on his phone and he relentlessly enters data. Eggs were replaced with a high fiber cereal. He added even more salads for lunch, more salmon for dinner, crackers and nuts replaced cheese and sausage for snacks… All the right things. His calories and his macro ratios are perfect.

He also spent three months in a supervised exercise program, building him up slowly, making sure nothing over-strained the new arteries. He’s getting more exercise than he has in years.

And he’s sleeping! Eight solid, enviable hours a night. More than he’s ever had. And a lot of studies show that lack of sleep can definitely contribute to a weight issue.

So he’s dotted all the ‘i’s’ and crossed his ‘t’s’.

Oh, and he’s gaining weight.

That’s right, I said gaining.

So much for calories in, calories out.

Of course we have a revised plan. But seriously? How is this even possible? He’s very disheartened. I’m sad for him. It’s always been my lot in life, but I didn’t mean to drag him along with me.

Egg white omelettes, here we come.

Sleep

I’m in favor. It’s one of those insidious things that we don’t appreciate how much we need it until we don’t get it, and when we’re used to not getting it, we really forget how fantastic it is.

In and around my husband’s hear surgery, we both had sleep studies.

He had one at home. It was pretty easy. He wired himself up for two nights in a row, stuffed some sensors in his nose, and went to sleep. The results came back as no surprise to me. “Hey, you have horrifically bad sleep apnea.” We had to dance around with our insurance company for a while but now he has an auto-pap machine, which is like a cpap, but it changes the pressure around a bit as needed. It’s the latest thing.

If you’ve hesitated to have a study done because the machines are such a nuisance, then I really suggest you rethink your choice. Yes, the machine is kind of a nuisance, and I’m sure it will be a pain when we travel. Yes, when he’s wired up my husband looks like a science experiment and frightens the cat. But.

But instead of the nine hours a night he’s needed as long as I’ve known him, he now wakes easily after eight, even on weekends when he could sleep in if he chose. He just doesn’t need more. He’s also more rested and more alert. He’s just more energetic.

And if that doesn’t convince you, I’d like to point out that I am sleeping better than ever. It seems I was waking up a lot at night because he’d stop breathing. And for some reason, that bothered me… It took me about two weeks to adjust to the new noises in the bedroom, the machine, the occasional whistle if the mask gets askew, but now that I’m accustom, I don’t notice anything.

It’s lovely. So if you need one, or your partner says you need one, please get checked out. It could really change your life.

My story coming up next.

You should probably check all the data

My beloved had heart surgery over the holidays. He’s all recovered now and doing very well. He’s attending his supervised exercise program to insure his physical recovery and his ability to achieve the recommended permanent changes to his activity level. He’s assiduously watching his food intake for all the categories his cardiologist is concerned in.

So, he’s exercising more than he has in years, he’s lowered his fats, he’s well below the calorie intake recommended for his size, age, and activity level, and after 6 weeks, he’s already stopped losing weight.

Yes, I know all the responses here. It won’t be linear, his body has to readjust, he’s adding muscle. There’s another line of responses, he’ll need to keep adjusting his calories down, his exercise up, maybe he shouldn’t eat this or that or the other thing…

It’s a little ridiculous. I don’t think something that works should be quite so easy to derail.

And then there’s the fact that since he’s lost 10% of his body weight, he’s considered a major success.

They rarely tell you that, those diet plans, how little you can truly expect to lose. They often don’t share statistics about how well participants generally keep it off, or for how long. They don’t even tell you what the true definition of ‘success’ is according to the diet research.

I am considered a success. Because a lot of years ago I lost a bunch of weight, and then I kept more than 50% of it off for more than 5 years. Statistically, a ‘successful’ diet doesn’t mean you got to thin.

This link isn’t so much an article as a commentary, but click on it for the cartoon which I don’t have permission to republish. If you’ve done multiple diets, you’ll know just how this feels.

We’re in the soup

I’ve never really talked about non-medical politics here before, but I’ve certainly talked about stress, so I think this post I made elsewhere fits right in.

Today a friend who I like and admire said “Politics doesn’t belong on Facebook” as part of a longer point.

And it really made me stop and think.

It took me a long time to start voicing my opinions on politics along with my opinions on science fiction, food allergies, and kittens. Because I have friends and family who I love and respect and on the one hand, I didn’t want them to feel attacked, and on the other, I really don’t like to argue in a public forum.

And then I look at the current face of politics. And I think about how very, very ugly the last election was. Somewhere along the line, politics became something we didn’t talk about in public. I think maybe we’ve gotten it very wrong. I thought I should double check the actual definition of politics. There are a lot. It’s a very complex word. Some of it is about power. Some of it is about leadership. But I want to draw your attention to this one,

the total complex of relations between people living in society.

And that’s where the problem comes in. We’ve made it socially unacceptable to publicly discuss how we think we should live together as a group. We’ve washed our hands of the messy process and handed it all over to professionals. The people who are really invested. The people who promise to make the best decisions for the good of the country.

I’m afraid what we did is turn over the hen house to the foxes. I don’t just mean the other guys. There are foxes at every level and for every stated ideology.

Have you ever been at a new restaurant with a group and everyone is slowly eating until someone speaks up and says “Ok, is it just me, or is this the worst soup ever?” And then everyone puts down their spoons and there is a babble of relief where everyone is so glad one person had the guts to say it out loud.

Maybe that’s what the women’s march was. Maybe it was a group of people who finally said, “I’m not sure I can be polite any more.” And their friends said, “I’m so glad you said that. What are we going to do?” They marched. They got a lot of attention.

They got a lot of us talking. Arguing. Looking for facts to refute the opposition.

Engaging with each other in a public forum.

We need a lot more of that. We as a populace need to spend a lot more time engaging in discussion, rather than arguments. We need to figure out how to agree to disagree. We need to figure out how to get back to the basics of learning to get along.

My friends in the opposition are caring, educated people who I respect. We all looked at the same data and came to disparate conclusions. I would like to work harder at finding places where we agree. Work harder at finding places we can compromise. Because I hate the fact that I’m not comfortable having a reasonable discussion. I hate the fact that we feel each other’s data is skewed. I hate the fact that this country is so divided that every public disagreement is met with violent spewings of hate rather than any attempt to bridge the gap.

And if we don’t want to see this sort of scary division in our country again in four years, and in eight, we need to learn to find some points of commonality. To try to understand each other. We need to disinter the idea of compromise, instead of our current system of ‘winner take all’.

I don’t know exactly how we are going to do that. I just know I’m going to put my best foot forward and try. So I’m afraid, dear friend, that I think maybe, at this point in time, Facebook is exactly the right place for politics.

Good news and bad news.

The good news is, I reacted beautifully to the cortisone shot. I’m moving better than I have in probably 3 years. I genuinely had no idea how much my knee hurt. Being pain free on one side is amazing.

The bad news is, it doesn’t actually fix anything. And they wear off. And there is a limit to how many you can get in a year. And it doesn’t fix anything.

At my next appointment I’m having a shot in the other knee. I want to see what that feels like. I also have a long list of questions about which OTC pain relievers are recommended for long term. There is a joint lubricant they can inject and I want to get that set up and try it. I need to know when and how they can overlap.

I’m going to ask if they know an actually China trained doctor of Chinese medicine. Acupuncture is supposed to do really well for arthritis and I’ve had good results from it before.

I saw a podiatrist. Unfortunately my insurance doesn’t cover custom orthotics  Pity, because even just the commercial ones he gave me have helped some.

Plans are building. Things are happening. We shall see.