My awesome truthfulness is paying off: an update

June 14, 2013

On February 14, 2012 I wrote this post about some of the little ways that I try to edit what I tell people about my health. I started out just wanting to write about the frustrations of coming up with different half-truths, but by the end of the post, I’d realized how much energy I was wasting on hiding something really major about my life. And I had no good reason for why I was doing it. At the end of the post, I vowed to stop. And I did.

Now, more than a year later, I’ve mostly adjusted, though in some ways I’m still getting used to this. Sometimes when someone asks me to make plans, I start to come up with an “excuse” instead of the truth. Most of the time, though, I just tell it like it is without hesitation. I give the real reasons why I can’t attend an event. I tell people upfront that I may not make it to their party – and why. I tell stories with socially-inappropriate (in other words: honest) details about health issues. I mention my health issues to mere acquaintances. And I couldn’t be happier about it.

Don’t get me wrong. It isn’t always easy. Sometimes it’s embarrassing (though I actually don’t embarrass easily, so it’s not as embarrassing for me as it might be for others.) Sometimes the person I’m speaking with gives me an odd look, like they think I’m crazy or they’re scared of me. The thing is, if they have an issue with me, then I’m perfectly happy not talking to them. And I think it’s better to find that out sooner rather than later. Plus, I have no reason to be embarrassed: this is my life, my reality. Why should I hide it? And really, watching you change your kid’s diaper is a lot more gross than hearing about the time I had to collect spit in a vial for a test. I think a lot of my talk makes people uncomfortable because they don’t know how to relate. It also worries them that this could happen to them. But that’s their problem, not mine.

So yeah, some of my awesome truthfulness isn’t well-accepted by others. I’m ok with that, because it’s fantastic for me! It’s so freeing to be honest about all of this! I don’t have to worry anymore about how to explain something, what to say, excuses to make, remembering what I told someone (because everyone hears the same truth,) or any other bullshit. It’s all out there, open and honest, in public.

I should mention that there are still boundaries. I’m not posting about my bowel movements on Facebook. I’m not tweeting every single detail of my health issues. I don’t go out of my way to talk about this crap every day. It’s just that when it comes up naturally, when it’s relevant, I don’t hide it. I don’t hide it at all.

It’s so freeing!

Is this the right move for you? I have no idea. Only you know your friends, family, acquaintances, co-workers, and social situation. Only you know your own comfort level. Maybe you should do it and maybe you shouldn’t. That’s a choice for you to make. All I know is that it’s right for me.

There’s a party tonight. I told the host I’ll be there if I feel up to it. Every time a friend asks if I’m going, I say that I plan to go if I feel up to it. And you know what? I’ve never felt less pressure about attending a party! This is awesome! So thank you to all of you who are reading this. And an extra thank you to all of you who write comments and tweet me. You have helped me to be more forthright online, and that has led to me being more forthright in person. Thank you for your support! I’m still sick, but I’m a lot happier.

Leave a Comment » | Decisions, Expectations, Isolation, Raves, Support | 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

What’s “normal” tired?

June 8, 2013

This is Pride week in Boston. I love Pride! It’s such a fun holiday.  Unfortunately, I can’t celebrate as much as I’d like. There are great parties Thursday night, then the Dyke March on Friday followed by the Dyke March after party, and then of course the parade on Saturday. There are parties Saturday night, and then more events on Sunday. And earlier in the week there are dedications, movies, etc. It’s a fun time, but who has the energy for all of that?

Boston Pride

My parents came with me to the parade today for the first time. We all had a lot of fun. We walked around, watched the parade, then walked around some more. By the end I was exhausted. I wanted to stay longer, see more, listen to the music, see more friends… but my body said no. My parents were tired too. So many it was normal to be so tired?

Then again, maybe I shouldn’t be comparing myself to people who are 30 years older than me. Maybe I shouldn’t be as tired as a couple of 60+ people. I looked around at my peers. Many of them went to the festivities that I missed on Thursday night, as well as the Dyke March. They walked in the parade today. They plan to go to a party tomorrow. They’re a bit tired, but after some sleep they’ll be fine. They’re my age. Is that what I should be aiming for? Is that how I’m supposed to feel?

It’s been so long since I felt “normal” amounts of energy that I have no idea what to expect now. The last time I felt that, I was around 20, so I suppose I would have less energy now, in my mid-30s, anyway. But how much less?

I know it’s impossible to measure my own health or even my goals against the health and reality of others. But I also know it’s human nature to try and compare anyway, so I don’t berate myself for it. Still, is there any point? Will I ever be close to achieving that level of so-called normalcy? There’s no way to know. But I’d sure love to get even part way there.

5 Comments | Expectations, Fatigue, Frustration, Isolation, Limitations, Pain, Rants, Symptoms, Unpredictable | Permalink
Posted by chronicrants

Welcome back, brain!

May 9, 2013

As bad as the physical symptoms are, it’s the cognitive symptoms that I have the most trouble with.

Last week I started on a downward spiral. It was slow at first, then I thought I was improving, and then it really took a dive. After the dive, I spent two days at home barely moving. Then I went to a medical appointment and the grocery store in the same day and could barely move that night. By yesterday, I was as fatigued as I’ve ever been, and I could tell that whatever was wrong, it wasn’t going to fix itself. I emailed my naturopath. She called back with a list of dosage increases for various supplements I was already on. Extra vitamin D, extra Isocort, etc. seemed like it might help. I took the pills and drops and then went back to watching tv, since I couldn’t do much else. I didn’t even have any interest in reading, which really isn’t normal for me.

Amazingly, I started to feel better almost immediately. I wasn’t sure if it would last, but this morning, I felt almost “normal,” whatever that means. It’s incredible! Thank goodness for that naturopath!

Now, I knew I wasn’t thinking well this week. My thoughts were fuzzy and took way too much effort. I didn’t even want to read. And my emails with a friend just weren’t right. She gets bored at work so we email back and forth most days, talking about her kid, my family, her family, her job, my insurance issues, tv shows, politics, and whatever else comes to mind. Yesterday we were debating the effects of language assimilation on cultural preservation. Part of the time I couldn’t get my thoughts to come out right in the emails. The rest of the time I couldn’t get my thoughts to get out right in my own head! I couldn’t seem to get a handle on what I wanted to say. I knew it was bad, but I didn’t realize how bad it was until I looked at those emails this morning and realized how poorly I was communicating. Today I could organize my thoughts. Today I knew the argument I wanted to make. For the first time in days I could think clearly. What a relief!

I won’t pretend that I have my cognitive abilities back completely; at least, not to the level they were at before I got so ill. But I’m sure grateful to have whatever I have right now. It was a short time, but I really missed being able to think. I’m so glad to have my brain back!

3 Comments | Expectations, Fatigue, Frustration, Isolation, Limitations, Rants, Raves, Symptoms, Unpredictable | Permalink
Posted by chronicrants

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