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

The trouble with sleeping late

June 29, 2013

I had another bout of annoying insomnia last night. This just started in the past year and it’s baffling. I wake up around 4am for no reason that I can figure out, then I just stay awake for a couple of hours before getting back to sleep. Then I wake up around the normal time, just deprived of sleep. It makes no sense to me.

Last night was different, though. After 2.5 hours of lying there awake, I finally drifted back off to sleep. But instead of waking up around 9 or 10 am, I slept until 10:42! I would have probably gone back to sleep, but seeing those numbers on the clock forced me to wake up. My pill schedule was all messed up! And of course it’s a Saturday, so I couldn’t ask my naturopath for advice.

First things first, I took my thyroid pill. That always happens as soon as I wake up. But then, 1/2 hour later, should I take my regular dose of Isocort? It’s an adrenal supplement, and the whole point is to take it at certain times of day based on my adrenal function at those times. My cortisol is low in the mornings, so I usually take it when I wake up (1/2 hour after the thyroid pill to avoid conflicts.) But should I take it at 11:15? That was too late! I compromised and took a half dose. I didn’t think it would be a good idea to skip it completely.

I had to wait a bit longer to eat, so breakfast was going to be around 11:30. Maybe I should just make that lunch. But wait, I have pills that I have to take with food 3 times a day! Ok, so I had a really small breakfast and took my breakfast pills, and I’ll have lunch around 2pm.

But wait! Lunch at 2pm means I can’t take my next round of adrenal supplements until 3pm and that’s too late! I’m supposed to take them around 2pm, but I have to wait an hour after eating before I take them. So ok, maybe I’ll move lunch to 1:30 and take the pills at 2:30. That’s not too bad.

And the fiber I’m supposed to take 2 hours after the breakfast pills and at least 1/2 hour before the lunch pills? Well, too bad. I’ll just have to take it closer to the other pills and so be it.

Before all the pills, if I slept late that just meant I started my day late. When did it become so damn complicated?

2 Comments | Decisions, Frustration, Limitations, Medication, Rants, Symptoms, Unpredictable | 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

I’m tired of defending myself against bigots

June 25, 2013

The disability insurance company is trying to prove I’m not really too sick to work. Social security is trying to prove the same thing. My sister apparently has similar thoughts. Medicaid is doing the same thing. And many doctors over the years have thought it was all in my head or that I was exaggerating.

So many people, more than I want to think about, seem to think that I’m not doing enough to get better. They think I should be seeing different doctors and taking magic pills so that I’ll be perfectly healthy.

The Supreme Court is due to hand down decisions on Prop 8 and DOMA this week. These two cases regarding same-sex marriage will change the lives of many people close to me. They will change my life too. If same-sex marriage becomes more commonplace in the US, people will become more accepting of it. I have no doubt of that. And that would make things so much easier.

Even within the LGBT community, so many people say that bisexuality doesn’t exist. Bisexuals aren’t real. They talk about “gay marriage” as if same-sex marriage only affects the gay and lesbian communities.

For the first time in a long time, someone said an anti-semitic slur to me today.

Strangers seem to think it’s ok to call me “honey” or “sweetie” in a diminutive way. People often assume I’m not good with math or with computers. They assume I can figure things out in logical ways. When I get upset, people have suggested that it’s “just my hormones.” They make it clear that my thoughts, feelings, and abilities are less valid to them because I am a woman.

I’m so tired of defending who I am. I am me. That’s it. End of story. So if you have a problem with people with chronic illnesses, or with bisexuals or Jews or women, or with a member of any other minority group, you should think about what’s wrong with you that you think you have to be better than everyone else. Then take your nasty thoughts and keep them to yourself.

4 Comments | Educating, Expectations, Frustration, Insensitive, Rants | Permalink
Posted by chronicrants

« Previous Entries
%d bloggers like this: