And then I woke up

July 14, 2013

I’ve been feeling relatively good lately. A couple supplement changes have resulted in more energy, and the recent break in heat and humidity have allowed me to go outside, which greatly helps my mental and emotional outlooks. It’s been really fantastic.

That’s why I was so happy yesterday. I managed to go to a potluck picnic. It was cool enough that I felt ok being outside despite the humidity. I spent time with friends. I laughed and had fun. I was there for 3 hours, which felt like a long time. I wanted to see another friend afterwards but I was tired, so I went home and watched a movie. All in all, it was a great day and I was happy.

Then I woke up this morning and I felt lousy. My throat hurt, a sure sign that my thyroid was acting up, and I had that run down-dragged out feeling. I had gotten up to go to the bathroom around 5am, and that’s when my throat first started to hurt. Maybe it was the heat, maybe it was the lack of sleep, but my body wasn’t happy. When I woke up at 9:30, late even by my standards, it was worse. I wanted to go back to sleep. I just felt miserable.

I knew immediately that I’d be skipping the brunch I had been looking forward to attending. It was already late, I definitely didn’t feel up to rushing, or even moving at a medium speed. Plus, it would involve talking to a lot of people I don’t know, which would mean acting like I felt ok even though I didn’t. No way I’d be doing that. And then I though about my afternoon plans. I’d been feeling so good lately that I ambitiously made plans to do two things in one day. So much for that. I just hoped I could keep the afternoon plans! And what about my plans for tomorrow? That’s something I’ve really been looking forward to for a while, so I hope I don’t have to cancel! And later this week I’m supposed to do something with a friend, it’s our one and only chance, so if I cancel, we won’t be able to reschedule.

And then I took a step back. Yes, I feel horrible today. Yes, I could be getting sick and I could spend the next week in bed. But it’s also possible that this is a short-term reaction to something and that I’ll feel better tomorrow. Who knows? That’s one of the annoying-as-hell aspects to these kinds of illnesses: they’re entirely unpredictable.

So for now I’m waiting and hoping. I still haven’t decided if I’ll see my friends this afternoon, even though I’d have to leave my house in just 2 hours. They’ll understand if I can’t make it. I’m definitely skipping the brunch today. And I can decide on everything else later. I just wish I could go back and change that feeling I had when I woke up.


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.


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.