Whimsy Wednesday

Short and sweet - Just a little something to make you smile.

Have a great day!

Could Keeping Data Help Me Make Better Health Care Decisions?

I watched this Ted Talk last night and wanted to share it with all of you. This presentation is all about how the data we collect about ourselves, coupled with a key question, can help us get better results from our interactions with our doctors.

Ultimately, I want to partner with my doctors so that I get the benefit of their knowledge and they get the benefit of my knowledge. Seems like the best way to make good health care decisions. Unfortunately, when you present with multiple chronic pain conditions it can be hard to get doctors to take you seriously and even harder when you know more about your conditions than the average general practitioner.

Some doctors still don't really believe fibromyalgia is a real condition. Some doctors still don't understand that migraines are not due to vasodilation and that the symptoms stretch beyond the classic one-sided pain, nausea, and sensitivities.

Talithia Williams gives some great examples of how data has made a real impact on the health care decisions her family made and the kind of care they received. It got me thinking that perhaps I could increase my chances of being taken seriously by doctors, and ultimately make better decisions, by keeping more data on myself.

I already keep some migraine stats on myself but I think I might try to expand the data I'm keeping - see if that makes a difference.

Instagram As A Distraction From Chronic Pain

I'm addicted to Instagram. I've only been on it for about a year but it took less than one week for it to become my favorite form of social media. To this day, it still holds that top stop.

I love seeing the pictures my family and friends post.

I love looking at fantastic interior designs like on @inspire_me_home_decor and @interior4all pages.

I LOVE seeing all the cute little chihuahuas like @tinytinynikit, @chihuahua_juliet and @cheeky_chris.

And, of course, I love taking pictures and posting my own instagrams. Partly, because it's simply fun to do. Clearly lots of people feel that way as Instagram is very popular. But I also love it because it gives me a creative outlet. It has inspired me to start taking lots of pictures. I then have so much fun selecting which ones to post and trying out different filters and settings. Talk about a great distraction from my pain and other symptoms.

I'm sure this won't surprise anyone, but lots of my instagrams are of Gypsy. Come on! Look at that face.

The great thing about Instagram is that it's all about the pictures. Some are beautiful, some are inspiring, some are cute, some link you to wonderful blogs... You can follow whatever kind of stuff you want. All kinds of people are posting all manner of pictures. Such fun!

Have you tried it? Do you instagram? I highly recommend it for all my fellow chronic pain warriors out there.

Whimsy Wednesday

If you've ever spent much time around cats, you'll love this one.

Have a great day!

Why I Don't Use Hulu Plus

We are the kind of people who don't have cable. I think the cable and satellite companies are a bunch of crooks with their overpriced packages, required equipment that forces you into a rental agreement, and unjustifiable added taxes and fees.

We are NOT the kind of people who don't watch TV. Thankfully, we have lots of other options for consuming all the shows we care about. We use a digital antenna to get local programming (NBC, ABC, CBS, FOX and the CW) for free. We have a subscription for Netflix, of course, where we do most of our watching. I also go on Hulu to watch shows on their free platform like The Daily Show and SNL. And, most recently, we signed up for Amazon Prime, where we have access to some great shows that Netflix doesn't stream.

But every now and then I think it would be nice to try Hulu Plus. There are a few shows on channels like HGTV that I would like to watch along with some old shows like Seinfeld that are only available on their paid streaming service. I've thought about it for almost a year and finally got ready to pull the trigger last week.

I read through the privacy policy along with the terms and conditions - yes, I am the kind of person who actually does that. I like to know what kind of access I'm giving away before I give it away. Just as I was about to start filling out my information, I checked one last thing - the address bar at the top. A secure website will have a green padlock icon and the https: will be green as well.

That's when things fell apart. The Hulu Plus website sign up didn't have the nice green icon it had a yellow caution triangle. Unsure of what exactly the problem was, I clicked on the icon and got this information:

"This site is using a weak security configuration, so your connection may not be private."
AND
"This site is using outdated security settings."

Unacceptable! How does a company of this size, in this day and age get away with outdated, weak security settings when they are asking you for your credit card information. Perhaps they should back off their advertising budget until they can invest in proper security.

Sorry Hulu. I demand more as a consumer.

Trying to Increase The Amount of Time I Feel Like Myself

Every now and then I have these moments when I really feel like myself. These indescribably wonderful moments are usually initiated by either great conversations with old friends or sharing fun and laughter with loved ones.

Born from a desire to have more of these moments I started thinking about what makes them what they are. In other words, why do I feel this way in these certain situations? What is going on and conversely not going on during these moments?

These moments are not:
-Free from pain
-Free from the other symptoms of chronic migraines and fibromyalgia
-Frequent
-In solitude or in large groups

During these moments:
-I'm with one or two other people.
-I'm not judging myself.
-I'm not feeling judged by the people I'm with.
-I'm not feeling bad about all that I can't do.
-I'm not thinking or worrying about my conditions or symptoms.
-I'm simply in the moment.

Seems to me, if I could find a way to stop judging myself and feeling bad about the many things that chronic pain took away from me I would greatly increase the amount of time I spend feeling like myself. But I don't know if all that is realistic.

Clearly, no downside exists to eliminating self-judgement. I want very badly to learn to do that. However, is it even possible to NOT feel bad about the losses instigated by my chronic pain? At best, I think general acceptance sprinkled with moments of feeling sad, angry, mournful, etc. about those losses is more realistic.

None of this sounds simple but the parameters are fairly narrow with defined edges, which makes it easier to focus on improvement. Over time I hope I will get better at being me.

Grocery Store Woes

I HATE grocery shopping. Everything about it.

A few weeks back I reached a breaking point with the store we had been shopping at for several years. This is the store with tons of crap in every aisle. I complained about it and they made an effort to cut back for a week or two and then returned to blocking shelves with fixtures - so annoying. They frequently don't have the shelves properly stocked. They frequently have items on the shelves that are expired. I saw the produce guy set a dirty bin on top of the lettuce. And, what pushed me over the edge, when trying to buy tofu, I found all of the packages were going to expire that day and they all had mold on them, as did the fixture they were housed on.

I just couldn't do it any more. Grocery shopping sucks enough for someone with chronic pain without having to deal with crap like that. Fortunately, hubby and I found a good alternative close to our house. This store has it's own problems. For example, the fish counter is right next to the prepared food area and bread, which means the fish smell chases me out of these areas faster than I would like. And the lighting is significantly more obnoxious than the other store.

Not exactly migraine friendly but I'll take clean and fresh over better lighting any day.

On the flip side this new store is doing a lot of things right. The aisles are all clear so everything is easily accessible. The produce is good enough. They keep the ginger away from the water sprayers so it's never wet and molding (this is the first store I've ever been to that keeps the ginger properly dry). Plus they allow me to bag my own groceries - I never like the way the baggers do it.

The thing is no matter where I shop, no store is able to meet all my needs. We buy some stuff at Costco, some stuff at Trader Joe's, some stuff at Whole Food and some stuff at the regular grocery store, which for now is Shop N Save. Even with all this running around, I still can't get everything I want. Oh how I wish it wasn't so complicated.

Maybe one day Wegmans or Hy-Vee will come to the greater St. Louis area.

Whimsy Wednesday

I love this woman - she is just so funny. Hope you get a kick out of it too.

Have a great day!

A Change In Thinking About Domestic Chores

When I was in my late teens and early 20's I was intimidated at the thought of a lifetime of taking out trash, doing dishes, laundry, dusting and the like. You know, all those domestic tasks that need doing again almost as soon as you've done them.

Back then, I didn't know where life would take me or what sort of career I would have but I knew there would be no escaping these tasks. I don't know why I even bothered thinking about such things but I did and I found it intimidating. Just to be clear, the tasks themselves never overwhelmed or intimidated me, just the thought of a lifetime of doing them.

Fast-forward to today. My career has been completely derailed by chronic pain. As a result, I've sort of ended up in the role of housewife. I spend most of my time at home managing my symptoms and working on the very same domestic chores that used to haunt my thoughts of the future.

Thinking back, I can't remember why I felt that way. Perhaps it was because back then I was a workaholic who was so excited about the things I was doing I imagined these tasks would hold me back. Perhaps I saw domestic chores as a distraction from my forward progress. I can't say for sure.

BUT, the me of today finds these same mundane tasks to be comforting and satisfying. The routine is good for me. It keeps me moving despite my pain. It distracts me from my pain. It gives me a sense of accomplishment and purpose and helps me to feel like I'm contributing to the household even though I can't work. Plus, you always see results when you do these things. The dirty pile of dishes can turn into a clean tidy kitchen in just 10 or 15 minutes. It's immediate gratification.

Whimsy Wednesday

A little Harry Caray for your enjoyment.

Have a great day!

Quick Pity Party

I wish I felt better. Obviously.

I wish these home projects didn't leave me in so much pain.

I wish I could just go out and do fun things whenever I had some extra time.

I wish I didn't have to pace myself.

I wish traveling wasn't so hard on me.

I wish I could do more each day.

I wish I didn't lose so much time.

I wish my pain was more predictable.

I wish I didn't have to deal with so many doctor appointments and medications.

Okay, I'm done complaining and feeling sorry for myself. Just had to get that out of my system quick so I could on. That's okay, right? To take a moment to just vent about the crap? I think so.

Now I need some food.

Dr. Goldman Talks About Doctors Making Mistakes

I came across this wonderful Ted Talk by Dr. Brian Goldman and just had to share it with all of you. If you are a consumer of medical services I would highly encourage you to listen to what this physician has to say about the god culture in medicine.





I believe that if doctors would stop pretending that they are gods, who know everything and never make mistakes, then patients would stop expecting it.

Can you imagine a world where doctors and patients could just totally honest with each other? I, for one, don't need my doctors to be perfect but I sure need the truth if I'm going to make the best decisions for my care.

The stakes are high. Doctors know it. Patients know it. Why can't we just be adult about this? Why can't we just come together and work towards health and healing as a team? How did every aspect of health-care get so messed up?

Can it be changed?

July 4th Blues

Happy 4th of July everyone!

Around here the 4th of July is a time for hiding out and wishing it was over. Our dog is terrified of the explosions and as long as people are setting them off, there is no rest for any of us. Restless nights = migraine attacks.

By the light of day, I sit pondering (stewing might be a more accurate word) how our society got to the point where we consider medical marijuana so dangerous it's illegal but somehow allowing anybody to purchase and set off explosives at home is totally cool. You don't need to be educated. You don't need to go through a safety class or training. You don't need a permit. Just come up with the money, spend the day drinking and then when the sun goes down and you are good and drunk go ahead and start setting off explosives. Go ahead and do that into the wee hours with no regard for your neighbors.

Think of all the deaths, serious injuries and fires started by these home fireworks in this country every year around the 4th. Not to mention the countless family pets who get terrorized. Shouldn't we leave dangerous explosives to the professionals and keep them away from neighborhoods?

I think so.

I hate this holiday. I'm not able to sleep until the random unknown idiots in the neighborhood behind our house either decide to stop or run out of explosives. Last night that was 1:30am. Tonight, who knows? Doesn't matter, it has already ruined my weekend.

A Painting Project and a Fibro Flare - They Go Hand in Hand

So I spent yesterday painting a wall. It was a long wall but one without much actual wall space due to the windows, fireplace and sliding glass door. The prep work was a bear because in addition to all the usual cleaning, taping and caulking, I had to take down all my room darkening curtains, blinds and all the associated hardware. My hands and arms were sore before I even got around to the paint. 

Thankfully the actual painting went fairly quickly, taking me only 3 hours to apply 2 coats. Like I said, there wasn't all that much actual wall space. But I did manage to trigger a rather nasty fibro flare that includes my hands, arms, feet and legs. My back and shoulders are also screaming but I'm not sure if that's my fibromyalgia or just run-of-the-mill pain. 

Today is all about the resting. Well, resting and getting those curtains back up. I HATE all this bright sunlight in here. Not exactly good for the old migraine head. I did put the blinds back up this morning and that takes the edge off a bit. I'll put the curtains up this afternoon - I want to give the paint a good 24 hours to set before I put the curtain rods back. 

The pain is totally worth it. The paint looks so much better than the white walls. I can hardly wait to have the whole space finished. 

It's hard to get a good picture of a wall with so much sunshine.

Next, I'm going to tackle the kitchen area. After I've taken a couple weeks off to rest, of course.