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

An experiment in dating

June 22, 2013

Over a year ago, I decided to stop dating. It was just too difficult to makes dates for things I could do and then not have to cancel. I couldn’t go hiking or take a walk on a hot day, and even eating out was difficult because of my food allergies. So often I didn’t feel well enough, so I canceled. It was just too hard, so I decided to stop for a while.

A few weeks ago I felt like I really wanted to date again. I want to be in a relationship, and that’s really unlikely to happen if I’m not dating. This time around I knew I had to disclose my health problems at the start, and if the person couldn’t handle it, better that I know that right away. That doesn’t make dating easy, but it makes it easier. I figured I’d give it a try the next time there was an opportunity. And this week there was an opportunity.

A long time ago I had exchanged emails with someone I met on a personal finance web site. This week he contacted me and asked if I wanted to go out. I took a breath and said yes. I told him I wouldn’t know if I was free today until the day before, and he was ok with setting things up then. Since I felt ok yesterday, I made a date for today, and planned something simple. It was tiring, but I did it. During the date, I mentioned my health stuff. I didn’t get into the details, of course, but I said that I couldn’t work because of my health and I mentioned my biggest symptoms. And he seemed ok with it.

I left the date feeling really good about my disclosure. Maybe he was ok with it, maybe he wasn’t, but he didn’t run away screaming. That had to be a good sign, right?

Then a little while later I got a text from him; he wants to see me again!

There won’t be another date because I’m not interested in dating him. But how wonderful that the first time I disclosed my health issues on a first date, he still wanted to see me again! Yay! I know it probably won’t always go that well, but it’s good to know that it can. Maybe I really will meet someone right for me one day. The only way I’ll know is by letting them see who I really am. Today was a good start in that direction.

2 Comments | Decisions, Expectations, Milestones, Raves, Relationships: Family & Friends & Dating & Sex | Permalink
Posted by chronicrants

Those three magic words: “I believe you”

June 12, 2013

I saw a new doctor today and now I’m beyond exhausted. Sitting up is unpleasant. I feel like my whole body is screaming at me to go rest on the couch with the tv and some popcorn. And who am I to deny my body what it wants? So this will be short.

The doctor I saw specializes in hard cases. He also sees a lot of patients with fatigue. Still, I was doubtful, and I think he could tell. He asked a lot of question – the most thorough questioning I’ve ever received (and I’ve received quite a bit!) At one point he asked if I ever get pins & needles anyplace. I said yes, and told him where. Then he asked if any of my doctors had ever addressed it. I was shocked to realized I hadn’t discussed it with them. Well, I had told one, but he said it was nothing. This guy disagreed. I tried to explain that I always filter what I tell doctors, trying to focus on the biggest issues, so they don’t think I’m a hypochondriac or something. He immediately understood, and said that he knows it’s common for patients to be ignored if they mention too many symptoms. It was amazing! He got it!

But there was one thing that wowed me more than any other. More than once, he uttered those three little words that every patient with a hard (or impossible) to diagnosis illness wants to hear: “I believe you.” I can’t tell you how amazing that felt. Here was a doctor who had read a 2-inch thick pile of my medical records, listened to my story once, and believed me! I don’t think this has ever happened to me before! Sure, I’ve had doctors believe me, but usually I don’t know that they believe me until after several visits, or maybe months or years of treatment. I know that my parents believe me. So do some friends. Other so-called friends (now ex-friends) did not believe me. Employers did not believe me. Strangers did not believe me. And yes, doctors and other medical professionals did not believe me.

I don’t know if he saw my tears. I didn’t want to call attention to them, but I didn’t want him to think I was upset. I was just so relieved! He believed me. He believed me. THE DOCTOR BELIEVED ME!

Since this is a short post, here’s a related bonus. I am so sick and tired of trying to convince people that my illness and disability are real. I am also tired of trying to convince them that ableism is real. Same with sexism and biphobia. So while this article is about sexism, I think it can be equally applied to all of the other -isms. I’m looking for justice and equality. I am happy to educate the uneducated. I will not tolerate the hateful.

2 Comments | Educating, Expectations, Fatigue, Frustration, Healthcare, Isolation, Milestones, Pain, Raves, Support, Symptoms | Permalink
Posted by chronicrants

It feels great to do ANYTHING proactive!

April 5, 2013

I’ve been a proactive person for as long as I can remember. Sure, I procrastinate a bit. Ok, I procrastinate a lot. But when it counts, when it’s important, when I care, I really get things done.

In my personal life, I get things done. When the cable company wasn’t fixing my service, I called them and hounded them until it was fixed (and I received multiple apologies from them!) When I needed medical paperwork at school or at work, I always took care of it; even in middle school, I was careful to get notes from my doctors so I would be excused from gym class and in high school I took care of special arrangements for a non-standard SAT test and got note-takers in my classes. You name it, I did it. Even as a child, my parents knew I’d take care of everything and never interfered at school or at my jobs. They were there for advice and support, but I was the one who did everything.

In my professional life, I was even more efficient. Just watch a vendor try and stiff me on a service or not meet a deadline! One particular staff member had trouble meeting deadlines, so I broke down projects for her and sent reminders for each piece well in advance on their due dates. When something broke, I got it fixed. I got out ahead of problems and stopped them in their tracks.

I like being in control. I like taking steps to get things done. And that’s why it’s so hard to not have any control in my current situation. Of course there isn’t a ton I can do to control my health. I do what I can, but it’s limited. I want to see certain doctors and try certain treatments, so I get frustrated at financial limitations. But I’m trying. With the disability insurance, though, I’ve been completely stuck. If it was up to me, I’d call the insurance company every single day and bug the hell out of them until they approved my claim just so they could get rid of me. Unfortunately, I have to rely on my lawyer to work with them. I sit and wait and then wait some more. I get notices of delayed decisions and can’t call them up to find out why on earth there’s a delay. It’s infuriating.

So it’s no surprise that I found myself in a fantastic mood a couple hours ago. I spoke to my lawyer yesterday about the latest delay, which I found out about earlier this week, even though it took place more than two weeks ago. We discussed my lack of options. There’s no regulatory agency. Calling the attorney general won’t help. Calling my senator won’t help. Calling the company isn’t an option for me, and she already left a message (which hasn’t been returned!) Suing is my only option, and it’s likely to fail. They know there’s nothing I can do, so I asked my lawyer why on earth would they bother to do it at all? Why not just delay another 6 months? After all, even if they approve me, they do not owe me any interest or reimbursement for costs I’ve incurred. So why wouldn’t they continue to delay it? My lawyer had a good answer: to keep their clients happy. They don’t want to piss off my employer (well, former employer) by denying every claim that’s submitted. That gave me an idea: what if I called my employer’s benefits person and told her what was going on? My lawyer didn’t object.

And that’s how I found myself finally doing something useful today. After 2 days of phone tag, the benefits person and I finally spoke. The call was short, under 10 minutes, but it was enough. I told her my story and she was concerned. She took notes. She asked the right questions. She expressed sympathy for my situation. And then she said she’d email the insurance company to find out if the latest internal deadline of theirs was met. She warned me that they wouldn’t give her an answer because they would only give that to my lawyer. However, she felt that by asking the question, they would realize they were pissing off their client and would move their asses on my case. Ok, she put it in more professional language, but that was the idea of it. She promised to get back to me next week when she heard from them.

This may have been the push that changes everything. Or it may accomplish nothing at all. But at least I did SOMETHING to help myself. After so many months of just waiting, it feels great to do something to potentially move things along. I just hope it works!

4 Comments | Expectations, Frustration, Limitations, Milestones, Politics, Rants | Permalink
Posted by chronicrants

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