You can choose to say no, but I can’t choose to say yes

October 22, 2015

“I have to do this and this and this and this and then there’s that trip tomorrow…. I mean, it’s fun, but it’s still a lot, you know?”

All I could do was nod my head. What could I say? I remember what it was like to be so busy and feel like I couldn’t keep up, but my friend was talking about how he was so busy, that tomorrow’s day trip would be overwhelming. The day trip that he and other friends of ours take every year. The day trip that I want to go on every year. The day trip that I miss every year because of my health problems. The day trip that he could say no to, but chose not to.

That was the hard part for me. I just kept thinking, “You could always say no.” I remember being in that place, and feeling like I couldn’t say no to things. Now I see what a luxury it is to have the choice! Because even when it’s something you really want to do, you can always say no. But you can’t always say yes. At least, I can’t always say yes.

There’s a certain perspective you gain when your body is constantly stopping you from doing things you want to do, things that your peers can do effortlessly. I wish I could explain it to my friends. I see things so differently now. It’s not necessarily better, and the cause for it totally sucks, but it’s different.

It’s easy to say what I would do in the same situation, but the truth is, there’s no way to know. Maybe it’s be just as over-committed as everyone else seems to be. All I know is that right now, I sure wish I had the luxury of choosing to say yes to invitations. I just hope everyone else remembers they have the option of saying no.

2 Comments | Decisions, Expectations, Fatigue, Frustration, Insensitive, Isolation, Limitations, Pain, Rants, Relationships: Family & Friends & Dating & Sex, Symptoms | Tagged: , | Permalink
Posted by chronicrants

Cutting out the people who don’t care

October 13, 2015

Her: I’d like to invite you to our house for Thanksgiving.

Me: You’ve probably heard that I might need surgery, so I can’t plan anything until that’s figured out.

Her: I’m sorry to hear about the surgery. I had no idea. Just let me know if you’ll be able to make it or not.

On its face, this seemed ok. She was sorry to hear about the surgery. So that was a good response, right? But I felt like something was missing. It nagged at me. I read the message again. Something still nagged at me, but I didn’t know what.

Hours later, it hit me: she didn’t ask why I needed surgery, if it was a big deal, or anything else!

I’ve been one of the lucky ones. Most of my family and friends have been incredibly supportive. A lot of people lose many of their loved ones when they have a chronic illness. It’s an unfortunate side effect that the doctors don’t tell us about. It’s hard and it hurts and it sucks. But it happens.

For me, it was my sister. I’m sure our problems aren’t all because of my health, but they’re a big part of it. Every now and then, I question if things area really that bad. Maybe I should try to make amends? Maybe she really does care? And then something like this happens.

Apparently our parents hadn’t mentioned my possible surgery to her. I guess there wasn’t anything to mention yet. I was pretty sure I’d need surgery, but I hadn’t gotten the MRI results yet (which is why I haven’t mentioned it to you yet – don’t worry, I’ll tell you all about it when it’s official.) Now, if someone I cared about had said, “As you probably know, I might need surgery,” I’d be upset and worried! I’d ask why, when, if I could do anything to help, etc. Actually, that’s how the few friends I told have responded. They’ve been amazing. They’ve been calling and texting and emailing. They’ve asked questions and offered support. Not my sister. Nope. She didn’t even ask why I would need surgery.

It’s hard to accept that sometimes a relationship can’t be salvaged. It’s natural to want to keep people in our lives. It’s especially hard when that relationship isn’t a vague acquaintance or a coworker, but a close friend or a sibling. We don’t have any other siblings. We only have each other. But that doesn’t matter. That’s not enough of a reason to try to be close to someone who obviously doesn’t care about me, or who at the very least tries to distance herself from me.

I know from past experience that I am better off focusing on the positive relationships in my life. So I will go to Thanksgiving dinner to be with other relatives (depending on how I’m feeling,) but until that day, I will put my limited energy into relationships with the people who love me and care about me.

Now if you’ll excuse me, I need to answer some more of my friends’ emails. They’re worried about me.

6 Comments | Decisions, Expectations, Frustration, Insensitive, Rants, Relationships: Family & Friends & Dating & Sex, Support | Tagged: , , , | Permalink
Posted by chronicrants

That sinking feeling

October 9, 2015

I’m sorry I haven’t written in a while. I’ve thought about it but, well, life’s been a bit rough lately. I’ll be writing about it one of these days, but I’m just not ready it. So instead, let’s talk about the phone call I just received 15 minutes ago.

***********

*ring*

Hello?

Hi, this is H from Dr. Z’s office. Do you have a moment to talk to Dr. Z?

Oh boy.

I’ve been Dr. Z’s patient for 10 years now, and this is the first time his office has ever called me for anything other than rescheduling an appointment. I immediately thought about the bloodwork I had done last week. Could it really be that bad? I’m seeing him in two weeks; what couldn’t wait?

I’d had a few things tested it. As it turns out, the concern was about my thyroid results. Unfortunately, he doesn’t test the Free T3, which I think is the most useful. Still, my TSH was very low. It could have been worse, but it was definitely too low. I’d raised the med during the spring and summer. I’ve read that some people need to make changes seasonally and I guess I’m one of those people. I’d completely forgotten about it, though, until a few minutes ago. Apparently, I need to lower the dose again.

So why did he call? Because at these levels, I’m at risk of being hyperthyroid, which means having an overactive thyroid. That would put me at risk of all sorts of things, include heart problems. You don’t want to mess with that shit! I’ve had low numbers before, but never this low. So he wanted to check on me.

Thankfully, I’ve done enough research to know what the symptoms of hyperthyroid are, and I’m not having those. Well ok, I’m having some anxiety, but it’s a very specific kind of anxiety that’s completely warranted, but I’ll get to that in a future post. I’m not jittery, my heart isn’t pounding, I’m not shaking. So I’m ok. For now. But I better start figuring out when to lower my thyroid dose.

There are people who never have to worry about that feeling. They never get medical tests. Or they get tested for relatively harmless things that are easily cured. They don’t know that sinking feeling of hearing that a doctor wants to talk to you about recent test results.

I’ve had that sinking feeling many times before. Sometimes it worked out ok (like when the biopsy showed I *didn’t* have breast cancer) and other times not so good. And those not-so-good memories are why I get the sinking feeling in the first place; because I know it really might be bad news.

Today I’m lucky. Today it’s not so bad. Today I know what symptoms to watch for and I know that I’ll be just find as long as I take the right actions.

I just hope I’m as lucky next time.

4 Comments | Expectations, Healthcare, Medication, Milestones, Rants | Tagged: , , | Permalink
Posted by chronicrants

“Have you tried…..?”

September 28, 2015

We’ve all heard it. A well-meaning friend, a nosy stranger, a nervous relative, a new acquaintance hears about your health problem and asks, “Have you tried X?”

The first time you hear it, you probably think it’s nice they’re trying to help. Maybe they even suggest something you’ve never thought of. The 5th time you hear it, it’s a bit annoying, but at least they want to help, right? The 782nd time you hear it, you’re fed up and trying not to yell at them about their ignorance.

But how do you really respond?

A friend and I were sharing stories about this yesterday. She said how she always wants to say, “Do you really think you’ll suggest anything I haven’t already thought of?” and I said that I do actually say that. She was shocked that I say it. I was shocked that she doesn’t say it.

The thing is, why bother pretending? I’m not mean about it, but I do point out that I’ve had my health issues for more than 20 years. I read the news. I follow health blogs, Facebook groups, and twitter accounts. I read library books and newsletters. I talk to friends with similar health problems. And let’s not forget, I just happen to see many doctors. So do they really think they’re going to suggest anything that I haven’t already thought of or had suggested to me by a professional? I point all that out, nicely, and no one is offended but they do stop offering me advice. Win!

What about you? How do you handle it when someone asks, “Have you tried….?” Please share your approach in the comments. I’d love to know what everyone else does!

6 Comments | Educating, Frustration, Insensitive, Intrusions, Kindness, Rants, Relationships: Family & Friends & Dating & Sex | Tagged: , , | Permalink
Posted by chronicrants

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