Am I Ms. Rants? Is she me?

December 17, 2014

Who would you be if no one knew who you were?

There was never a question what I would name this blog. I knew I wanted a place where I and others could rant about the frustrations we deal with around our chronic health problems. And since I wanted to be anonymous, Ms. Rants seemed like an appropriate name to give myself. I have written almost 500 posts now (incredible!) and today I was thinking about the persona I project via “Ms. Rants” versus who I am in real life. And they’re actually not that different.

I follow a few blogs. In many spheres, bloggers take on larger-than-life personas. Sometimes it’s to get a bigger crowd. Sometimes it’s so they can experiment with being someone else. It’s sort of like putting on a superhero cape just to see what will happen.

For me, this blog was always about discussing the reality of my health situation, so there never seemed to be any point in being anything other than honest and straight-forward. Still, that’s easier said than done. I’ve noticed that hiding behind a fake name has allowed me the comfort of saying things I wouldn’t normally say. The funny thing is, after saying those things here, I’ve begun to say them in real life! I still usually limit discussion of bowel movements, pain that makes me scream, and insurance woes to chats with other friends who have chronic illnesses. Still, in that way, I’m becoming more like Ms. Rants, instead of the other way around.

Of course, readers also only see certain parts of my life through this blog. I’m not intentionally lying about who I am, I’m just trying to keep the topics relevant. I don’t talk too much about my other hobbies, how I spend every minute of the day, what books I read, or what music I listen to (currently this, but I listen to most genres.)

The funny thing is, you would think that I exaggerate a lot of my attitude on this blog, but you’d be wrong. After all, here I can hide behind a fake name, but in real life I wouldn’t really criticize doctors, post public requests for help on Facebook, tell off people who park illegally in handicapped parking spaces, tell strangers they’re asking things that are none of their business, tell friends the details of my problems, or generally say half the things I purport to say. But I do. I don’t do those things every time. It depends on my mood and on my energy levels. Sometimes I keep my mouth shut. But most of the time I speak up. That’s just who I am. It’s who I’ve become over the years. And I’m happy with that part of myself. It surprises a lot of acquaintances and new friends, but so far, they seem to appreciate my straight forward approach.

In the blogging world, though, you never know if that kind of attitude is real or not. In my case, it is.

So I’m not entirely Ms. Rants, and she’s not entirely me, but we’re pretty damn close to one another. I type exactly the way I speak. I usually don’t edit my posts, and when I do, it’s usually just to fix typos. No, the truth is, I write what comes to mind. Sometimes that’s good, sometimes it’s not. Just like sometimes the things I say are good, and sometimes I put my foot right into my big fat mouth. But I’m willing to take that chance, because I like who I am and believe in what I say.

So to you other bloggers out there, do you put on an act in your blog, or do you write as yourself? And if you’re not a blogger, how do you think you’d write if you were?

I am so grateful for all of you who read these posts and to those who comment, so I wanted to just take a moment to be honest about all of this.

Next time I’ll go back to my regular, health-focused posts. I’ve got a long list of topics I want to write about, so maybe inspiration will strike and I’ll pick up one of those. Or maybe I’ll come up with something random, like today (this topic came to mind less than an hour ago.) You just never know.

3 Comments | Educating, Raves | Tagged: | Permalink
Posted by chronicrants

I’m done being the go-to sick expert at parties

December 15, 2014

It’s my fault, really. Someone asks me a question and what do I do? I answer it! What am I thinking?

The thing is, I’m happy to answer that one question. The problem is that it’s never just one question. One question leads to another and before you know it I’m talking about health issues for half an hour at a party where I was excited to get out of the house and be around other people so that I could forget about my health issues.

It doesn’t happen every time, but it happens too often. It happened last night. And I’m done.

Last night started simply, with one person asking a group of us if anyone had experience with CPAP machines, because he was having trouble with his. So of course I talked to him about my experience and tried to help him troubleshoot his issues. But as usual, two things happened that I hate.

First, this guy was all excited to have someone to talk to about this stuff, and wanted to delve into details. I saw him get that way people get when the suddenly see me as a potential mentor, teacher, or whatever. He even friended me on Facebook later, even though we’d only had that one conversation about health stuff. We know nothing else about each other. But based on that conversation, he wants to talk to me more.

Second, two more people joined in, even though they couldn’t really help. One knew nothing about sleep apnea but wanted to suggest we both try herbal medicine. The other knew a bit about sleep apnea and treatments because a friend of hers has it, so she told us what she’d heard from her friend. It’s nice they wanted to help, but they kept interrupting a conversation between two people who actually have the medical condition to offer their unfounded opinions. That prolonged my conversation with this guy, and it also made it harder to break away. Suddenly, it was a group conversation that was taking on a life of its own, so it was harder to end.

Thankfully, a friend came by, and I did something I don’t usually do. I ignored everyone else and started talking to my friend about something completely off topic. I think I asked him about his work or his holiday plans…. I honestly don’t remember. What I do remember is that the guy with the CPAP questions tried to talk to me again, and I ignored him. It was rude, but I considered it self preservation. In the past I would have answered him, and then I’d have gotten sucked right back into that health-related conversation and it would have ruined the rest of my night. I didn’t have any more suggestions for that guy, so we would have just been discussing what we’d already covered, but in more detail. This way, we all ended up talking about something else. I don’t know how anyone else felt about it, but I was much happier!

Last night was a big success, so going forward I’m going to keep doing that. I’ll still answer a question here or there, but when someone asks about my inability to eat gluten at a party, I won’t end up in a half hour conversation about Celiac Disease, how I figured out I had it, where gluten hides, blah blah blah. Nope, I’ll just promise to send them some useful links so they can read about it themselves and I’ll move on.

Don’t get me wrong. I’m still all about education. If someone thinks they might have Celiac, for example, I’ll gladly try to help them. But maybe not at a party. Maybe not when I’d rather be thinking about another other than my health. There’s a time and a place, and I think it’s about time I choose both.

Do you have this problem? Do you get sucked into health-related conversations at gatherings? How do you feel about it? How do you handle it?

9 Comments | Decisions, Educating, Expectations, Frustration, Insensitive, Intrusions, Rants, Symptoms | Tagged: , | Permalink
Posted by chronicrants

“You’re too poor to see that kind of doctor”

December 13, 2014

I’d like to see a functional medicine doctor*. It sounds simple, but that sentence has complexities beneath the surface.

If I said I’d like to see an eye doctor, it would be easier: I would make an appointment with one of the dozens of eye doctors in my area who take Medicare and MassHealth. I would get my eyes checked and my insurance would pay the bill. Simple.

Of course, not every doctor takes insurance. Well, maybe I shouldn’t say “of course,” because a few years ago I just assumed they all did. And now, I’m surprised when a friend questions me. “What do you mean they don’t take insurance? Don’t all doctors take insurance?” Um, no, they don’t actually. Still, even if one rheumatologist doesn’t take insurance, another one will. The ones with the focus I want might not take insurance, so I might still be stuck, but it will be in a different way.

You would think it would be that way with every specialty, but it’s really not. When it comes to functional medicine, the entire specialty seems to be out of reach. I found several functional medicine doctors in my area who are highly recommended. Some don’t take any insurance. Others take a few select types of insurance. Most don’t take Medicare. One takes Medicare, but not MassHealth, and he works for a concierge service that charges an additional $365 per year. Medicare would cover 80% of the bill, but without MassHealth, I would have to pay the other 20%. That could easily be $150 per visit. On top of that I’d have to pay the $365 per year. And many of his tests aren’t covered by insurance, so I would have to pay for those, too.

Hanging out with a bunch of other people with chronic illness and chronic pain this week, I asked if anyone knew of a functional medicine doctor around here that take both Medicare and MassHealth. someone immediately responded, “You’re too poor to see that kind of doctor.” Normally I would try to argue with her, but this time, I’m afraid she might be right. I just can’t seem to find a functional medicine doctor who takes my insurance and without that, how can I afford to go?

I’ve gotten my medical expenses down. Thanks to a relatively low insurance premium and almost no copays, I’m paying only $500 or so every month. Of course, that includes visits to my naturopath, who isn’t covered by insurance at all. If I went to a functional medicine doctor it would have to be instead of my naturopath, and I’m not willing to make that tradeoff right now. Yes, a functional medicine doctor could order tests that a naturopath can not in my state. But I have a good relationship with my naturopath. I trust her. I’m not willing to throw that away to take a chance on someone new right now.

So once again, I see money (or a lack thereof) throwing up a roadblock in my journey to recovery. And once again, I remember how incredibly lucky I am to be able to pay for a naturopath right now. I know that many, many others are not so fortunate. Still, it’s so frustrating to see so many potentially helpful doctors who are just a different form of insurance away.

*If you don’t know what a functional medicine doctor is, check it out. I haven’t seen one myself, obviously, but I’ve heard good things.

If you’ve seen a functional medicine doctor, what has your experience been? What kind of medical care has been restricted by your lack of funds? And if you know of a functional medicine doctor in the Boston area who takes Medicare and MassHealth, please let me know!!!

10 Comments | Decisions, Expectations, Frustration, Healthcare, Limitations, Medication, Rants | Tagged: , , , | Permalink
Posted by chronicrants

A life of constant experiments

December 11, 2014

When your health changes constantly and you’re trying to improve it, sometimes there’s no way to know what will help versus what will make it worse other than to try. It can be difficult, frustrating, and exhausting to have to constantly try things out, knowing they could make you feel horrible, but what choice is there? Sometimes, all you can do is experiment.

A few years ago I hated the constant experimenting. I was nervous about each one, and so many either had no effect or made things worse. It was overwhelming to be constantly thinking about which experiment I was in and which I should do next and how to control the variables.

I’ve been noticing a big difference lately, as the number of experiments has gone down. There are still a whole lot to keep track of, but over all, it’s less stressful. I try to only do one at a time, so the shorter list means I no longer have a year-long list of them waiting. Still, I get nervous.

Last month, my experiment was to start walking almost daily. More recently it has been getting my new CPAP setup to work for me. That involved further experiments with different sleep schedules. Then last week, I took a short trip. I have 2 new supplements to try and 1 prescription to start. Walking seems to be working, as long as I don’t overdo it. The CPAP setup experiment is a partial success. There’s more to be done. The new sleep schedule is a success, though. The trip was mixed, but overall it showed me that I need to improve more before I travel again. I’ll start one of those new supplements this afternoon, then the other in about a week. The prescription will have to wait until I know where those supplements stand. Maybe they’ll make me really sick, maybe they’ll help me feel better. Maybe both. Maybe neither. And that’s the “experiment” part, because I just can’t be sure.

Having relatively few experiments to do right now is a relief, but it still isn’t easy. I have to constantly think about what I’m doing and about how I feel. Friends think I just take a pill and then wait and see. But it’s not so easy when I know that pill might make me feel really sick. Should I take it today, even though I’m going out this afternoon? And if it doesn’t agree with me, will it ruin my plans for the weekend? Or I could wait. I could put it off, like I’ve been doing for the past 2 weeks. But that doesn’t help anything, it only delays the inevitable.

And of course there’s the juggling act, as I try to figure out which experiments to run in which order. Friends think my doctor decides this but they don’t. I do. My current list of experiments spans 3 doctors, and that doesn’t include the travel. There’s no one person to turn to. Besides, no one knows my body better than I do.

I feel like my own guinea pig. I don’t like it, but it works. Trying new things is the only way to feel better, either for a minute or in the long term. So that’s why I push myself. And that’s why I’ll risk ruining both my afternoon plans and my weekend plans by trying a new multivitamin today. Because despite the problems, it’s worth it if it works. I only hope it works.

6 Comments | Decisions, Expectations, Frustration, Healthcare, Limitations, Medication, Rants, Symptoms, Unpredictable | Tagged: , , | Permalink
Posted by chronicrants

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