Going public is like coming out over and over

September 13, 2017

Once upon a time, no one knew I had health problems unless I told them. Ok, that’s not entirely true. There were signs. It’s just that most people didn’t pick up on that signs, or I could shrug them off as an injury or something. It was easy to lie.

Then I decided to write a book.* Now, when you Google my name, that book comes up. And it’s all about having chronic illnesses.

This has been such an interesting experience. It makes my journey public in a way it never was, because even though most people don’t Google my name, I know that they could. And that leads me to think and speak about my health in different ways.

Take last night, for example. I was giving a presentation in front of a group on a different topic entirely. Someone asked a question and I was answering it with a few examples. And then I mentioned medical stuff as a relevant example. There was was, in front of a small group, pointing at a screen, and looking completely healthy except for my knee braces. And I felt odd mentioning my health, but it was relevant. And I even said, “this is no secret – if you Google me, you’ll see the book I wrote on this topic.” And I saw some eyes move south to those knee braces.

It’s like coming out. I joined an online dating site a few months ago. I was taking a walk with a neighbor and she was asking me about it. We didn’t know each other well, but were friendly. She asked if I had met anyone and I said I’d met a couple interesting people. She asked about them, and as I mentioned the man, everything was normal. When I mentioned the woman, I saw her hesitate. I watched her brain churn as she processed that bit, and then we moved on. With other people, where there’s context, I might directly say that I’m bisexual. But no matter what, if the topic is going to come up, I need to come out over and over again, because whether I’m dating or single, no one will know I’m bi if I don’t mention it.

And every time, I wonder how the other person will react. Will they be accepting? Will they be jerks? Will they ask the same old tired questions?

Just like mention my health problems. Every time, it’s necessary to specify what I’m talking about. Every time, I wonder how they will react. Will they be accepting? Will they be jerks? Will they ask the same old tired questions?

Sometimes I want to wear a sign on my head, or print business cards to hand out: YES, I HAVE CHRONIC ILLNESSES AND NO, THE DETAILS ARE NOT YOUR BUSINESS. Except that now, with the book, some of the details are out there. So they could be your business. Still, it doesn’t mean I want to talk about it all the damn time.

But you see, there’s also the part we don’t usually think about: it’s freeing! Every time I start to question whether or not to mention something, I remember, it’s out there anyway, so why not talk about it? Is it ok to share this? Might as well. Is this a secret? Apparently, not any more.

Again, it’s like coming out. I don’t have to watch my pronouns anymore. I can just speak about past loves and lovers like anyone else would. Sure, I have to use my judgement for safety. Yes, some people will be jerks, but there aren’t any secrets.

That isn’t to say I don’t have limitations. I still write things on this blog, for example, that I wouldn’t say publicly. There’s definitely something to be said for having a pseudonym. Still, to be able to speak publicly and not question myself constantly is HUGE!

It also means more people in my life know about my health issues. I’m more open about it on Facebook because, after all, they see me promoting my book. There’s no question about it at all anymore.

Coming out about orientation, health, or anything else is a personal choice. This isn’t something I would have done even just a few years ago. I am so glad I have. For me, right now, this was definitely the right move. If it’s not right for you, though, that’s cool, too. You have to do what works for you.

Have you been public about your health stuff? How has that gone for you? I’d love to hear about it in the comments!

*It’s frustrating that I can’t tell you what the book is. I want to so badly, but that would defeat the purpose of having a pseudonym here.

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Pups, trees, and better health

December 27, 2016

img_20161223_091955I grew up in a suburb, then went to college in a quiet rural area. But my university had around 17,000 undergraduate students, plus graduate students, faculty, and staff. It was a city unto itself. After college I moved to a city, then a different city for graduate school, then several more moves within cities. Which is why it feels so odd to be living in the suburbs again.

Five short days ago I moved to a suburb that’s a lot quieter and smaller than the one I grew up in. This will be a huge adjustment, but overall I think it will be good. Since this blog is about living with a chronic illness, here are a few ways I think it will be good for my health:

  • This complex allows dogs and there are dogs everywhere. I’ve pet many in just these few short days, including my neighbor’s new puppy! Petting dogs always makes me feel better, no matter what. And soon I’ll have one of my own!
  • Check out the view from my desk at the top of this post. It’s not as great as my old view, but from my window I can see so many trees! From my apartment I can take a walk along a path through woods, something I used to have to drive to do. This will do wonders for my emotional health.
  • It’s so quiet here. I’ve been sleeping better than I thought was possible. When I’m awake, it’s peaceful and relaxing. It’s strange, and a huge adjustment, but I find it calming and lovely.
  • No. More. Stairs. I’m on the first floor and there are no stairs to get into the building. This is amazing!
  • Easy parking. I used to feel stressed out about finding a parking space. Then I would have to carry things from my car, sometimes several blocks, just to get to my building (before dealing with the stairs.) Now the tiny parking lot is by my front door, and I never have to park very far. Bringing in groceries today was so easy.
  • Laundry is now in my unit. The last time I had that was when I lived with my parents. My guess is that laundry won’t be fatiguing anymore.
  • No traffic. I have to do a lot more driving (I can no longer walk to things or take public transportation,) but it’s much less stressful.
  • Less pollution. ‘nuf said.
  • It’s a smaller apartment. There are downsides to that, and I’m not thrilled, but I also know that on the days I’m in too much pain to walk, having a smaller apartment will be super helpful.

In time, I’m sure I will find more ways this move will be beneficial to my health. In the meantime, I’m excited to enjoy these new benefits. Now excuse me while I go unpack some more boxes….


What a difference a year makes

November 25, 2016

Holidays are a good time to reflect. Sometimes it’s because of the holiday itself, but often it’s simply because they stick in our heads. Last year at this time I was…. It’s easy to remember.

Yesterday was Thanksgiving and it made me think about some recent Thanksgivings I’ve had. Some were a real struggle health-wise. Some were tough emotionally. A few were both. And then there was last year.

Last year I was recovering from surgery. I remember being super careful with my poor foot in a cast, making sure no one accidentally tripped over it. And if you’d asked me then where I’d be this year, I’m not quite sure what I’d have said. But I wouldn’t have guessed where I’m actually at.

I’m still recovering from that surgery. I thought I’d be long healed by now, but I still have some pain. I saw the doctor today and it looks like I’m still healing properly, just very slowly. Oh well.

I’m getting ready to move! I thought that by now I’d have received my Section 8 voucher and I’d be moving into a crappy place in a not-so-desirable area. I wasn’t sure when it would happen, but they’d led me to believe it would be soon. Instead, I still haven’t received the voucher (they’re still saying it will be “soon” but I no longer believe them), and I’m moving into a kick-ass apartment! Last Thanksgiving I was still months away from discovering the affordable housing programs that would let me live in a really nice place for less rent than I’m paying now. And when I do finally get that voucher, it should apply to my new apartment – yay!

Tomorrow I’m participating in a craft fair for the first time. Last Thanksgiving I had only recently learned that I could sell my kinds of crafts in the fall and winter. I was so excited! Because summer is no time to sell hats and scarves, and because I feel shitty all summer long, too. But fall and winter are perfect! Plus, I’ll get the Christmas shoppers coming by my booth. Last year I thought about participating, but I felt that I couldn’t manage a really long day (9am-3pm!) at a craft fair. I’m still not so sure that it’s a good idea, but this year I feel well enough to try!

Last year I’d seen some improvement to my health but I had plateaued. Now I still feel like I’ve plateaued, but I’m doing better than I was last year. So even though the changes were small, they definitely happened!

Last Thanksgiving I was just starting to create a business. Now I’m still working on the same business but I have a slightly different business plan. I’ve come farther than I’d have expected with it, even though it’s not bringing in any money yet. But I have confidence that it will!

Over the last year I unexpectedly saw an old friendship end and I surprisingly saw a couple of newer ones blossom.

Last year I was incredibly single. This year I still am. Ok, some things don’t change much.

All of this makes me wonder about next year. What will I be doing by next Thanksgiving? How will I be feeling? I can’t wait to find out!

Do you ever look back on where you were a year ago? How are you feeling about it?


Exactly the same and completely different 5 years later

July 27, 2016

birthday-cake-1320359_1280Happy birthday to us! Last week was the 5 year anniversary of Chronic Rants. And when I look back, it’s hard to believe how much has changed and how much has stayed the same over the last 5 years.

I still have the same symptoms as I did then, it’s just the severity and frequency of various symptoms that has changed. I no longer work full time at an office, but I am trying hard to start a small online business that I can do part time from home. I still encounter all sorts of ableist bullshit, though it’s usually in different ways than before.

I suppose the biggest change is my perspective. 5 years ago I was struggling, but I assumed that I would continue working. I assumed my health would continue to slowly get worse. Little did I know that just a few short months later I would be leaving my job for a “temporary” break that would become permanent. I had no idea my health would get so much worse so fast.

But this blog has also helped to change my perspective. Writing about my illnesses has taught me a lot. Talking to you through emails and comments has taught me more.

I stand up for myself even more than I did before.

I am more aware of other illnesses, other medical systems, other cultures surrounding illness and disability.

There are many chronic illness blogs out there. I read a few before I started writing my own, and I have found many more over these last 5 years. The online communities are so important for all of us.

Now I wonder where I’ll be in another 5 years. Will I have finally found my fur baby? (I’m really hoping that will happen in the next year!) Where will I be living? How will my health be? Will I be able to travel again? Will I be working? Will I be on benefits? Which symptoms will be bothering me the most? Which will be worse? Which will be better? I have so many questions, and all I can do is work to push my life in the direction I want it to go and hope it goes at least a tiny bit according to plan.

Thanks for joining me on this awesome journey!


Stretching boundaries, hitting walls

June 21, 2016

Eeek! It’s been almost 2 weeks since I’ve written and I miss it so much! The funny thing is, for the past few days I’ve been at a loss as to what to write, but today I find myself with too 2016-06-12 10.08.47many posts on my mind. The rest will have to wait for another day, because today I want to talk a bit about why I was gone for so long.

I love Massachusetts. It’s a fantastic place to live. But sometimes I just want to get away. I used to travel a lot. Ok, not as much as some people, but it was rare that I was in the state for more than a month or two at a time. Then I got sick. So yeah, that changed things more than a little.

Last month I wrote about my frustrations with not being able to travel. Lucky for me, the states here in New England are small, so I can travel between them somewhat easily. And that’s how I was able to go to Maine this month!

I’ll skip the details, because you’d probably find them boring anyway. The gist is that I stayed in a rented house on the shore with a bunch of family, including my parents, extended family, and 2 awesome dogs.

So I’m sure you’re wondering, how’d it go? Well, it was mixed.

I felt great when I arrived! The drive was under two hours, then there was a lovely boat 2016-06-14 17.25.17ride. I was greeted by family and we all had a nice time and a fun dinner. It was later that I felt horrible. Really horrible. Please-make-it-all-go-away kind of horrible. I’ve felt worse, of course, but this was still lousy.

Somehow, I finally managed to sleep. I slept terribly that night, but I did sleep just enough. I woke up at 5:30am. To me, that’s not morning. Anything before 6am is still night. But I was wide awake, the sun was streaming into my room, and I should hear the roar of the ocean outside my window. It could have been a lot worse.

I spent 4 days in Maine. That first night was rough. There was also a lot of pain. There were a lot of stairs just to get into the house. And I didn’t figure out until 2 days before the trip 2016-06-12 15.15.17that the reason my feet had been hurting was that I needed new sneakers. And there was some family-related stress.

But there were also bright skies and blue ocean. Even the drizzle was lovely. There were jokes and laughter. There was puppy cuddling. There were board games and walks. Sometimes I wanted to go on a walk with folks but I couldn’t. Other times, I could, but they had to slow down for me, or cut the walk short. Once I turned back early. Sometimes I went on drives. And it was all ok.

It was frustrating that I couldn’t do everything I wanted to do. Everything they did. Everything I used to do in the same coastal town when I visited just a few years ago.

On the other hand, check out these photos. I can think of worse ways to spend 4 days!

I was exhausted when I got home. I spent the night resting, watching tv, and checking in with friends. I had to rest the whole next day, too. The following day I felt barely well enough to go out for groceries, then I collapsed on the couch when I got home. Still, the 2016-06-12 19.25.54recovery wasn’t too bad.

I pushed myself. But I pushed myself carefully. I felt crappy some of the time but good most of the time and even great for a tiny bit. It will never be perfect, and right now that’s ok. I’m just thankful that I got to go at all. And I got to sit by the ocean.


I got a dog. Maybe.

March 4, 2016

I had expected to write an excited posted filled with happy stories and cute dog photos. Instead, I’m caught in a limbo, unsure what to do.

I’ve wanted a dog for ages. I grew up with a dog and I’ve always loved dogs. In my 20s I 2016-03-01 18.55.33worked and traveled too much for a dog. I wasn’t ready for the responsibility. In my early 30s my health was too bad for a dog. Then last year, I was talking to a friend for the millionth time about how much I wanted a dog, but that I couldn’t manage all of the walks. She pointed out that I could litter train a dog.

Suddenly, getting a dog seemed feasible. I could walk her once a day and play with her indoors for exercise and have her use the litter the rest of the time. This could totally work. I’d have a lovely companion. A furbaby. Someone to love and someone to love me. I could finally get my dog!

After a ridiculous amount of thinking and over analyzing, checking with doctors and working out logistics with my landlord, then recovering from my foot accident, it was finally time. I sent out several applications. And then the call came: my application was being processed for a little cutie named Roxanne!

Roxanne is a darling. She is sweet and beautiful. She’s housebroken, so in some ways she’s a lot less work at this stage than I expected. She’s got big ears and lovely markings and a tail that’s almost always wagging. Right now, she’s sitting in my lap.

And I don’t know if I’m going to keep her.

If the rescue agency had said the adoption was final, maybe I’d have a different mindset. I’ll never know. Instead, they said this was a foster-to-adopt. I had 2 weeks to decide. After two weeks, I could return her to her last foster home and get almost all of my money back. I shrugged it off when they said that; of course this was permanent! But now I’m not so sure….

Even in the first days, I had doubts. I tried to ignore them. I decided to try the fake-it-til-I-make-it approach. I emailed my loved ones about the adoption. I posted on Facebook. It wasn’t quite working. I was overwhelmed and exhausted and not sure if she was really going to be mine. I posted a more hesitant teaser on this blog. My parents visited to see if they could offer some insight. I spoke to friends with dogs. I talked to her new vet.

And I still don’t know what to do.

At first, I felt like she was too hyper. But that was mostly her acting out as she adjusted to a new place, combined with me not handling it in the best way. Really, she’s so great, there’s nothing particularly “wrong” with her. I just wonder if I can really fit Roxanne into my life.

I had a good thing going. But it was tenuous at best. I was starting to do some paid work, but I was having trouble finding time and energy for it. I was hoping to even start dating again soon, but there was no time or energy for that. My health was doing ok, but I wasn’t doing my exercises consistently. Still, it was going pretty well overall.

I want to give Roxanne back, but I’m not entirely sure why.

If I want to give her back because I don’t think I can fit her into my life without giving up something I shouldn’t (like paid work or physical therapy), then I have to give her back. But if I want to give her back because I got used to having no responsibilities, that’s not a good enough reason. If I want to give her back because I’m scared of the unknown, that’s not a good enough reason.

I used to make changes in my life. A lot of them. I changed cities. I changed jobs. I traveled. Now, I haven’t been on an airplane in 5 years. I’ve been in the same apartment for 10 years. I haven’t been working. My life has been fairly stable. I think stability can be good. I need it to a certain extent. But it can make me complacent. Roxanne would definitely change things up, and maybe that’s the part that’s scaring me. In a life where chronic illness takes away my sense of having any control at all over my life, that stability gave me a small measure of control that I could hold on to. Am I ready to rock that boat?

Or maybe I just didn’t fully understand just how much work a dog would be, and it’s too much for me.

I would love any and all thoughts, advice, and tips you can offer! Please comment below. Do you have a dog? How do you balance dog care with chronic illness? Do you feel that you shy away from new things because you’ve become set in your ways? Really, please share anything you think of. Maybe it will help me.

Right now I’m leaning towards giving Roxanne back. I’m not sure if I can manage having her. But this would also mean giving up on my dream of dog ownership, at least for now (maybe down the road I’d feel more ready?) Not to mention, I would miss her and feel terrible about her being abandoned yet again.

Help!


10 great things about you

February 7, 2016

Sometimes with chronic illness it’s easy to focus on the bad stuff about ourselves and forget the good stuff. I’ve done it far too many times over far too many years. A couple weeks ago I wrote about chronic illness and self-esteem. Based on the response to that 2015-07-09 12.01.45and other articles I’ve written about this, I think a lot of you know what I’m talking about and you’ve had the same problem.

So today we’re changing that. I want you to do two things.

First, write down 10 great things about yourself. Write them, type them, record them, dictate to someone else who will write them. Your format doesn’t matter. Just do it. If it’s too hard, then start with 1, build up to 3, and try to get 10 over the next few weeks. These aren’t about your looks but about who you are as a person. Think about what makes you great. Keep that list and reread it every month, every week2015-11-01 14.07.39, every day, whenever you feel down – or whatever works for you. Add to it whenever you think of something else that should be on the list. When someone compliments you for something specific, add it.

Second, write at least one of those things in the comments below. You can write more than 1 if you want, but please share one. This 20120917_181648will help you and others in so many ways. It will show others that it’s possible to still be awesome when you have a chronic illness. It will give them ideas of things that are great about them, too. And when you declare to the world (or at least to the readership of this blog) that you love these things about yourself, you’ll be taking it heart and believing it more strongly than ever. So go for it!

To be fair, I figure I should probably share my own list. So here goes.

  1. I’m a good daughter, always there for my parents and helping them when I can.
  2. I’m a good friend. Even when I can’t do much physically, I listen, I offer advice, and I’m there for my friends.
  3. I’m a great crocheter.
  4. I go out of my way to help others, even people I don’t know very well.
  5. I’m a good cook. Ok, I have a limited range, but I do a good job with what I know.
  6. I’m strong. Life has made things tough for me, and sometimes I’ve given up temporarily, but eventually I always go back to trying hard to get better (or to at least not get worse.)
  7. I try my best to be a patient and health advocate for others.
  8. I’m good with kids.
  9. I’m interesting. I read a lot and have different hobbies, so I always have a variety of things to discuss with people. (Hint: this is handy for changing the topic when I don’t want to talk about my health.)
  10. I appreciate nature. Put me at the shore and I can happily sit and watch the waves for hours. Even pictures of trees make me happy. I always stop to smell the roses (literally!)

Ok, now it’s your turn. Take some time and create your own list. And remember to reread it whenever you feel a bit down.


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