The real reason I became loud and pushy: self-preservation

May 18, 2015

We’re taught to be polite. We’re taught to be respectful. But what happens when being polite and respectful is killing you?

I mentioned to some friends recently that I didn’t used to be loud and pushy. In fact, I was quiet and rather meek for a long time. They were shocked. If you’re a long time reader, you might be surprised, too. They couldn’t imagine me ever being shy about speaking my mind. But they didn’t know me before.

I was a shy child. When an adult, even a well known friend of my parents, spoke to me, I would hide behind my mother’s legs. I got past that, as children do, but I was always shy about expressing my opinions. I hated raising my hand in class, even when I knew I had the right answer. Bit by bit I started raising my hand and volunteering thoughts and ideas. Still, I was never pushy about it. I would tell my boss what I thought, then go with whatever he decided.

There was no one moment when that changed. It was a gradual thing that snuck up on me over time. Then one day, someone else brought up the need to be pushy with doctors, and I had a sudden flash back to the days when I was timid, and I realized I wasn’t like that any more.

I was a child when I had my first symptoms, so I did what my parents and my doctors said to do. It was always some combination of Advil, heat, ice, support braces, etc. None of it worked. Still, complaining made things worse. I learned early on that if I was too insistent about things, I’d be ignored. I was lucky that my parents never ignored me, but certain doctors and teachers did. Several openly suggested I was making the whole thing up.

As I became an adult, I still wasn’t taken seriously. And even when the doctors took me seriously, I still received poor care. I got shuttled between doctors within an insurance-induced maze and continued to get worse and worse. I was told not to come in any more. I learned to speak up for myself in college, where the disability support services were horribly lacking. I pushed for what I needed to succeed in class, but only within the strict bounds of cultural politeness.

In my early 20s I had an unusual ability to see a doctor of my choosing for a short time. I won’t get into the insurance loophole, but I found it and used it. For the first time, I took things into my own hands against the advice of my doctors. And for the first time in 11 years, I got a diagnosis. That was my first taste of how going against the grain could help me.

Somewhere in my late 20s or early 30s, I started to stand up for myself more. When doctors would bend my hand and ask, “Does this hurt?” and I said yes, they would still try to do it again, but unlike a decade before, I pulled away. I argued with insurance representatives, even when it did no good. I tried to get better care. I was still being polite most of the time, but I was pushing that boundary more and more.

Around this time, my health took a dive. The doctors said they couldn’t do anything. I knew I had to take over. If I didn’t, what would become of me? If that wasn’t enough, I was fighting with a disability insurance company and with social security for benefits that I knew I deserved. It felt like my life was falling apart. It was do or die, probably literally. So I did. In an effort for self-preservation, I stood up for myself. When a doctor didn’t want to run a test, I asked why. When they gave a reason, I debated, using the facts I had learned through my own research. When my primary care physician didn’t want to give me a referral to a specialist I suspected could help (and he later did!), I switched doctors. I interviewed doctors at the first appointment to see if I would stay with them. I asked for more tests, more treatments, more of everything that I thought could possibly help me. I was polite when that seemed to be the most likely way to get what I wanted, and I was rude when that seemed the better way to get what I wanted. I argued, pleaded, and even yelled. I stopped short of becoming abusive, but otherwise, I pushed hard.

Pushiness has carried over into other parts of my life. I’m sure some people find it annoying. Others find my forthrightness refreshing. I find it necessary.

I don’t know when being pushy became my default setting, but it did. And it probably saved my life. It’s not the best route for everyone, but for me it was the only way I could find.


Is it possible to rent an apartment near Boston with a therapy dog?

May 6, 2015

I have always wanted a dog. I grew up with a dog, and ever since he died when I was 11 years old, I’ve wanted another.

3-27-2015 4-01-42 PM

Sometimes I’m lucky enough to get to babysit for this cutie!

In my 20s I knew I didn’t have the right lifestyle for a dog. I worked long hours and traveled a lot and, if I’m being honest, the truth is that I just wasn’t ready for the responsibility. Then when I got so sick I had to leave my job, I was home a lot. I stopped traveling. But I was so sick that I could barely take care of myself, never mind another being.

Now it’s different. I’m still too sick to work, but I’m doing a lot better. I’m more stable. I’m taking care of myself ok. And I really really really want a dog. I ache to have a dog. Literally. When friends talk about their dogs, I ache to be in their shoes. When friends post photos on Facebook of dogs that need adoption, I ache to take those dogs home. I’m so ready to have a dog. And I’ve been mostly sure I could handle taking care of a dog, except for the walking part. Dogs need exercise, but some need more than others. I could get a dog that doesn’t need much exercise. I’ve been working hard at walking most days, and I’m taking short walks about 6 days a week! (Woo hoo! Those of you who’ve been reading this blog for a while know how big this is!) But dogs need to pee and poop more than once a day.

So I felt there were three big obstacles to me getting a dog:
1) Walking.
2) Money.
3) My landlord.

Then something changed. I was talking to a friend this week about how much I want a dog and my concerns about walks, and she suggested training one to use a litter box. Many people have suggested that, but it sounds ridiculous. The thing is, she did it! She had a dog that used a litter box! She also had a friend who did it. So maybe it wasn’t that ridiculous after all? I looked it up online and found some great resources. There’s even special litter for dogs! This totally solves problem #1!!!

Now, let’s assume I can handle the money aspects. Those are a real concern, but I’m working on them.

That leaves my landlord as the final obstacle, and I can’t imagine how I can possibly overcome that problem. You see, Boston is a pricey city. (When I say “Boston” I mean the neighboring towns, too. Just fyi.) There’s also a very low rental vacancy rate. This means that rents are high and landlords have a lot of power. I won’t get into all the details of the effects of the Recession on the housing market, etc. Just believe me when I say this is a tough place to be a renter. And the vast majority of landlords don’t allow dogs. Including mine. (My landlord doesn’t allow cats, either. And I believe birds are also off limits.)

Remember back in February when I said I was looking for an apartment? Well I did. I looked. And I gave up. I’ve been in my current place for many years, and my landlord hasn’t been raising my rent as much as they could. I pay a lot less than new tenants in my building. So even though I was looking in a less expensive area (where I’d rather live anyway) I couldn’t find anyplace as nice as mine. And I wasn’t even looking for a place that allowed dogs!

“Wait, what if it was a therapy dog?” you might ask. A lot of people have asked that. And yes, by law all landlords have to allow therapy pets. I would have no trouble getting my doctor to write the necessary letter. In fact, she has previously said that I should consider getting a pet because it would help me. So let’s assume I got the letter and I had a therapy pet. Now by law my landlord can’t kick me out, right? Sure, but they can “forget” to fix things in a timely manner. And when my lease comes up for renewal, they can raise my rent to what my neighbors pay – $300 a month more! I wouldn’t be able to claim discrimination if others pay that much. And future landlords might be just as difficult…. if I could even find a new place to live! Remember, I already looked at apartments last winter. Yes, there were places, but do I really want to live someplace smaller, darker, and louder just so I can have a dog? I’m not sure.And what if that place didn’t work out either? I really don’t want to move constantly.

So now I’m wondering, what’s the reality of living with a therapy dog when you rent an apartment? Do landlords retaliate? Or do they actually accommodate you the way they should? I know that no one person can speak for all landlords, but I would really love to hear about people’s experiences to find out if this is even possible. If you have a therapy dog and you rent an apartment, how has it been for you?


There’s no cure for me and you need to accept that

April 29, 2015

It used to happen more often. A well-meaning family member or friend would mention something about a cure “one day” and about me staying hopeful. Over time, those comments gradually ceased. I made it clear I didn’t want to hear it and they probably began to accept that it was unlikely.

Last week, though, a well-meaning relative made one of those comments. I was caught off guard, since I hadn’t heard it in so long. I tried to explain there won’t be a cure. In fact, no one is even researching a cure right now! And even if they were, and even if they were on the right track, it would be a long time before that cure was commercially available. Hell, few of my conditions are even being researched for potential treatments, never mind cures! But he kept trying to say it could happen, I couldn’t be sure, it was possible, etc.

Now here’s the thing about hoping for a cure: it makes the other person feel better. They can see how poorly I’m doing at a given time, and think that one day down the road I’ll be better, and it comforts them. I get that. And if they want to believe it, they can go ahead. What I don’t want is for them to discuss it with me. If I believed there was a cure coming then yes, I might be comforted, but I don’t.

My pain started when I was a kid. For many years my family, friends, and doctors told me that it would be ok, that I would get better, that the pain would go away. It didn’t. It’s been more than 2 decades and the pain is even more prevalent now than it was then, plus I have even more symptoms. “It will be ok” became a lie to my ears. I couldn’t believe it any more. I still don’t.

So talking about a cure isn’t helpful for me. Yes, I admit there might be a cure in 20, 30, or 40 years. But in the near future, no, there won’t be a cure. I’ve come to terms with that. I’m ok with it. Well, sure, I’m not thrilled. Yes, I want to feel better and travel and ride a bike, and pick up my nieces and nephews and do all those other joys in life that I can’t do any more. But I have accepted my reality. Now I just need everyone else to accept it. Or to at least not talk about cures when I’m around.


Should I write a book?

April 27, 2015

For a couple of years now, several friends have been trying to convince me to write a book about my experiences. I’ve been tempted, but only in a mildly curious way. After yesterday’s frustrating incident, I suddenly really wanted to write a book. The question is, what’s the point?

Blogging is one thing. It’s short little snippets. It’s free for me to do and free for you to read. It isn’t too time consuming for any of us. The topics vary. If I write a book, it would be a huge effort. It would have many pages, maybe a couple of chapters, devoted to the horrendous long term disability and social security processes. It would have chapters about insensitive doctors and ignorant acquaintances. It would explain what the symptoms feel like and the fear and frustration that come with them. I’d put it all in there.

So should I do it? I’m wondering if this would be of any use to anyone. While my ego would love having a book published in my name, I really don’t want to do it unless it would help someone. I’m not sure if it would. What do you think? Let me know in the comments, or email me at msrants at gmail.com or tweet me @CIRants and let me know your thoughts. If it’s a good idea, tell me why. If it’s a bad idea, tell me why. I don’t get offended easily, so go ahead and be honest.

I’ll keep writing here either way. I love this blog and the small community on here. I love the readers who comment. I love getting to know people. So this blog won’t be going away any time soon.

Thanks in advance for your opinions and advice!!