Sadly skipping the 4th

July 4, 2013

This is a barbecue holiday. Well, barbecue and fireworks. That’s what July 4th is known for. You stuff your face with friends and then watch colorful explosions in the sky.

Well, that’s what others are doing today. Not me. Thanks to my heat sensitivity and the ridiculously hot and humid weather, I am stuck indoors with air conditioning. My body is much happier this way, but my mind isn’t. I’m bored and lonely. I have a friend visiting from out of town. He and other friends are all going to a bbq. I would go if it was 10 degrees cooler and the dew point was 15 degrees lower. Unfortunately, I can’t control that. A bunch of other friends are a bbq in Boston. After they eat, they’re going to watch the fireworks from the roofdeck. Again, I wish I could go to that.

It’s not my fault. It’s not anyone’s fault. But it still sucks. Knowing it’s no one’s fault doesn’t change the level of suckiness. So I’ll try to make the best of it. I took a cool shower earlier. I ate a nice lunch. In a few minutes I’ll do my physical therapy exercises. Then I guess I’ll read. So it’ll be just like any other day. Except it shouldn’t be. This isn’t like any other day. It’s one of the few national holidays that isn’t all about family and religion and tradition. Everyone is off work and everyone is celebrating. And I’m sitting my living room trying not to overheat.

Yup, it definitely sucks.

2 Comments | Expectations, Frustration, Isolation, Limitations, Rants, Symptoms | Permalink
Posted by chronicrants

Lessons in limitations

July 1, 2013

I’ve been trying to convince myself that, if need be, I could do some part time work. It wouldn’t be much, but maybe a few hours every day. It would be something I could do from home, something computer-based. And then I got a reality check.

The other day I started a new blog. I’d been thinking about it for a while and I finally took the leap. This blog is about 2 years old and I’d forgotten just how long it took to set this up. Also, I was in much better health when I set this up. Hell, I was even working full time!

I set aside lot of time and I got to work. I signed up a domain name, and got the basic site set up. I created an email account to use for the work associated with the site. I signed up for a Twitter account related to the blog. Every time I signed up for something new, I had to confirm it through email. I had to make sure it all connected. I spent some time finding just the right look for the blog. I chose an avatar to associate with the blog account, the email account, and the Twitter account. I wrote the “About” page. I really wanted to write my first post, but I just didn’t have the energy.

In the end, I spent more than 3 hours working on my new blog. I got it all set up and ready for my first post. Well, it was mostly ready. There are some security things I still need to do and some other small items to take care of. But it’s mostly done. And by the time I got to that point, after 3 hours of work on the computer, I was mentally and physically exhausted. I was worn out. I was in pain. I’d had it. All I wanted to do was lie down. My eyes hurt, so I figured it would be good to read a book for a bit. I only read 2 pages. I was too tired to read.

So I learned a lesson. As much as I want to think otherwise, I’m not ready for a job, even a part time one. Sure, I spend lots of time on the computer now, but it’s broken up into small bits and it’s mostly reading. Being more actively engaged and sitting for so long was just too much. I’m not ready.

I just wish the insurance company and social security would read this.

3 Comments | Expectations, Fatigue, Frustration, Job, Limitations, Pain, Rants, Symptoms | Permalink
Posted by chronicrants

The little things really DO make a BIG difference

June 29, 2013

It’s amazing how a small thing change make a huge difference. I was just getting mentally ready to go to a friend’s house. Pills in purse? Yes. Food? Need to bring some. Clothing? Better make sure it’s all loose today. Cooling towel? Cool enough to work for the car ride. The routine is familiar, but annoying.

And then I got a text from my friend: “What room temperature is best for you?”

WOW! We hadn’t discussed that. I knew he had a/c, and I’d mentioned that I’d need him to turn it on, but that was it. But he remembered how sensitive I am to heat. He knows that often I don’t meet up with him for lunch because I can’t stand the humidity. I know he and his wife don’t love the heat, but unlike me they can certainly deal with it. And he thought to ask what temperature I want his a/c set to. He’s going to change the temperature of their apartment for me.

Now that’s a thoughtful friend!

2 Comments | Expectations, Kindness, Limitations, Raves, Support, Symptoms, Thoughtfulness | Permalink
Posted by chronicrants

A day to celebrate! DOMA is dead!

June 26, 2013

Obviously I was upset yesterday. And sure, I should probably write about the pain flare I had last night while I was sleeping. But I just can’t. Today is too great a day to dwell on anything bad!

For those who don’t know. The U.S. Supreme Court ruled today that DOMA is unconstitutional, and it also ruled that Prop 8 had no standing. In English, the Defense of Marriage Act is dead, which means the federal government will now recognize same-sex marriages performed in the states where they are legal. The Proposition 8 ruling means that same-sex marriage is now legal in CA.

When I was younger, I just assumed that if I grew up and fell in love with a man then I’d get married, and if I fell in love with a woman we’d live together. That was it. Then in 2004, same-sex marriages started taking place in my home state of Massachusetts and everything changed. Suddenly, I could marry a woman! For some people this had an immediate affect. Since I was single, I wasn’t about to get married, but it still changed my attitude and also others’ perceptions of me. After all, if we’re equal enough to get married, maybe we’re just plain equal.

Even with more and more states recognizing same-sex marriages, the federal government did not. This affected taxes, inheritances, hospital visitation rights, health insurance, immigration, and so many other issues. I felt the inequality myself. I saw it affecting my married friends.

Today that changed. After days, months, years of waiting, we finally had the answer: the Supreme Court ruled that the federal government must recognize all marriages equally, just like it had before DOMA was created. I felt the initial excitement: WE WON! And then it started to sink in. I started to feel it. We won equality. We won rights. We were going to be treated the same as everyone else. I watched my Facebook and Twitter feeds fill up with the excitement. I saw the occasional detractor and dismissed them entirely. They’re falling behind the times. I have no doubt that one day soon, same-sex marriage will be legal throughout the country. The dominoes are falling. The objectors are realizing they have no valid points. The general public is realizing that if they’re straight, this really doesn’t affect them directly at all. And soon this will just be another embarrassing part of history.

I usually make an effort to write only about chronic illness-related issues but, well, this is my blog so I can write whatever the hell I want, right? And today I really can’t write about anything else. It’s too great a day.

7 Comments | Educating, Expectations, Milestones, Politics, Raves, Relationships: Family & Friends & Dating & Sex | Permalink
Posted by chronicrants

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