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!

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?

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.

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.

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.

And the insurance nightmare continues to wreak havoc with my life

June 19, 2013

I haven’t updated you on the insurance nightmare in a while. Sorry about that. I guess I’ve been trying to ignore it. And now that I think of it, it’s funny that I chose to describe it as a “nightmare,” considering how it’s been messing with my sleep.

For those who don’t know, the short version is that I left my job a year and a half ago when my health took a nosedive and I received payments from short term disability insurance. I expected to return to work long before that ran out, but my health was worse than I’d wanted to admit to myself, so I used up STD and then applied for long term disability. LTD denied me, so I hired a lawyer and appealed. The company’s response to the appeal was due more than 4 months ago, so of course they haven’t given it to me yet.

Now that you’re caught up to everyone else, here’s the latest: I still don’t have a response. The company wanted me to see an independent medical examiner (IME) and a field investigator. If I said no, they’d deny my claim. I guess they’re still looking for some way to deny me? I don’t know. I saw the IME. I met with the investigator. Both went well, I think, but it’s hard to really know.

Of course, both appointments were horrible and exhausting. Both involved local travel. Both were long, a combined total of 4 hours split over two days. And both were incredibly stressful. What if I said the wrong thing? What if they didn’t believe me? What if they thought I seemed to healthy? I need the money, but it’s also the principle! How dare they deny my legitimate claim! Especially when so many fraudulent claims go through. It’s just so wrong! So I had to make them understand.

When the time came for each meeting, though, it wasn’t hard to be convincing. I didn’t sleep well before each one. I was pale and puffy. The stress wore me out. By the end of each meeting, I was so fatigued that I had trouble focusing. I could barely understand what was being said. By the end of the second one, I was having trouble sitting up. How observant were they? Did they notice the way I rubbed various joints while I spoke? Did they see my twitching fingers? Did they realize that I didn’t stand up to say goodbye not to be rude, but because it took too much effort? I may never know.

I’m still in wait-and-see mode. I don’t know how long they will take to respond. I hope that it’s quick, because in a month and a half I will lose my health insurance if they haven’t made a decision. I suppose that’s a story for another day. Still, it’s all part of the same thing.

So instead of hanging out with wonderful friends tonight, including the one I mentioned the other day, I am home alone. Instead of having a fantastic time (because in our 20+ years of friendship, I don’t think I’ve ever seen them and not had a fantastic time,) I’m sad and lonely. Instead of feeling bad in the usual way, I feel much worse.

I need to get healthy. I need to get healthy so I can see my friends, date, and go back to work. And so that I can find a way to change this barbaric insurance system.

A true friend understands

June 17, 2013

As I’ve said many times before, my sister and I don’t get along. Yesterday was another good example of why I don’t like to be around her.

My mother made a big dinner for Father’s Day. After dinner, I was sitting in the kitchen talking to my mom while she put food away. My sister was washing dishes, and suddenly asked me to help dry. Now, while we’d been sitting around earlier, I had made several long trips to the bathroom. I was pale. My mother commented later about how bad I looked. My eyes were puffy and half closed. While the rest of the family had talked animatedly in the living room before dinner, I had been laying there half asleep, barely saying a word. So it was pretty obvious I wasn’t feeling well. And yet she was asking me to dry dishes. I didn’t want to start a fight, so I just stood up and dried a couple of dishes. I did it slowly, careful not to drop anything, careful not to fall when I turned to put each one down. And after a few, so there just a little space in the dish rack, we all went into the dining room for dessert. I figured it was good enough. It was more than I should have done.

After dessert I didn’t even bother going to the kitchen. My dad and I sat at the table chatting – I figured he shouldn’t be abandoned while my brother-in-law was taking their dog outside for a potty break. My mother and sister were cleaning up in the kitchen. I heard my mother thank my sister for her help as my sister walked into the dining room, where I sat with my dad. My sister responded, “Well I couldn’t let you do it all by yourself.” Then she turned and looked right at me. I would have given her the finger, but again, I didn’t want to start a fight in front of my parents.

Now let’s compare that to the day before. A friend was visiting from out of town. I wanted to see her and her three kids, but I didn’t feel up to going to her parents’ house where she was staying, 1/2 hour away from me. So she agreed to make the drive up to my neighborhood. There’s a great playground within walking distance of my place but I didn’t feel up to walking, so she drove to pick me up. She understood that I couldn’t help much with the kids, and didn’t mind that I sat on a bench in the shade while she chased them. She was just happy for our time together. She even gave me a birthday gift. I pointed out that I didn’t expect anything – after all, I hadn’t given her anything this year. I can’t afford it thanks to the insurance bullshit. She said that even though I couldn’t afford to give gifts, it was still my birthday and she wanted to give me something. And you know what she gave me? A big gift bag full of gluten-free goodies! She gave me several kinds of pasta, flour, cake mix, pancake mix, pretzels, and cookies – all gluten-free! She knows how hard it is for me to find some of these things, and she gave me exactly what she knew I’d want and enjoy. And as she gave it to me, she offered to exchange anything I couldn’t eat, since she wasn’t sure exactly what my other food restrictions were. Talk about someone who understands!

Sure, my sister can be a bitch. Sure, she didn’t wish me a happy birthday. But I’m choosing instead to focus on the excellent people in my life who are wonderful, understanding, and supportive. Most of us have lost people due to our illnesses, but some of us have been lucky enough to find true friends will always be there for us.

As a side note, I want to remind myself and you that we contribute to these friendships too. Maybe I can’t babysit for my friends or cook for them when they’re ill. They offer to get me groceries and pick up prescriptions. But I lend an ear and am very supportive. I have helped them prepare for job interviews, research insurance for a kid’s illness, and just listened to them complain about jobs and families. Our illnesses don’t prevent us from being good friends. Some people don’t get that, so it’s up to us to focus on the ones who do.

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