Package excitement: oh how things have changed

March 30, 2016

There was a time when getting a package in the mail was an exciting thing. It still is. But in2016-03-30 12.35.09 a very different way.

As a kid, a package was a birthday gift from a far away relative. In college it was brownies and cookies from my aunt. As Amazon and other online retailers came on the scene not long after I left college, a package meant a book, an electronic gadget, or some other purchase I made for myself. I’m a bit embarrassed by how I wasted my money, but some of these purchases were really useful. Regardless, when I saw a box with my name on it, it was exciting!

I was thinking about this earlier this week when I opened a box and felt a different kind of excitement. It’s here! Finally! This box didn’t contain a book, an electronic gizmo, or new shoes. It wasn’t fun or exotic. It was….

New medical supplies!

An ASV is like a CPAP machine – it helps me breath while I sleep. )It’s used for an unusual form of sleep apnea called central complex sleep apnea.) Every few months insurance will cover a new set of supplies – a new tube and new mask. Right before I become eligible for replacements, I can feel the current ones losing effectiveness. So I was super excited for my new supplies. It meant breathing at night would be even better, and when I breath better at night, everything in my body feels better the next day!

Part of this change, of course, has to do with money, or lack thereof. I’m simply not buying stuff online as much. Part of it is age. Relatives don’t send gifts anymore. If they want to give a gift, they give a check. Don’t get me wrong, I love and appreciate checks. But they aren’t fun like gifts are. They aren’t surprising. (Then again, I also don’t get stuck with things I don’t like.) But part of it is my health. My healthy friends don’t get medical supplies in the mail. And most people who get medical supplies probably aren’t excited by them. But I’m excited by anything that makes me feel better.

And if that small improvement in health comes in a box in the mail, then you can be damn sure I’m going to be super excited!

What about you? Can you relate? How do you feel about getting new medical supplies? Please share in the comments!

2 Comments | Expectations, Medication, Raves, Symptoms | Tagged: , , , , | Permalink
Posted by chronicrants

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!

9 Comments | Decisions, Expectations, Fatigue, Frustration, Isolation, Limitations, Milestones, Rants, Raves, Relationships: Family & Friends & Dating & Sex, Support, Unpredictable | Tagged: , | Permalink
Posted by chronicrants

Chronic illnesses: they’re not boring

February 16, 2016

Chronic illnesses are a lot of things. They’re frustrating, irritating, disturbing, enlightening, infuriating, unpredictable. They teach us who our real friends are and they teach us about ourselves. But however you think of them, they’re certainly not boring.

Every now and then I’m not sure what to write about on here. Lately I’ve wondered if I’ve just covered it all. After all, I’ve written 587 posts (not including this one.) Some were personal, like my experiences with sex or social security, and some were general, like a news item. But they were all relatable. And they were all about chronic illness.

And now, 587 posts later, I’m realizing how much more there is to write. There are my own experiences as my journey continues, there’s the changing political landscape, and there’s simply everything I haven’t covered yet.

Chronic illness can lie in the background of your life or it can be front and center, or maybe it moves around. But once it’s prevalent, it’s not boring. It effects so many things, big and small. Doctors, hospitals, medications, insurance issues, stereotypes, jobs, strained relationships…. and that doesn’t even touch upon, you know, the actual effects on our bodies! Many of us deal with symptoms daily. We think about them so much, we forget that some people don’t constantly worry about how to sit to avoid a pain or what to eat to get just the right nutrients to compensate for that disorder or which activities can be combine to conserve energy and stave off fatigue. It’s a never-ending game where there’s no winner, but we try not to be losers.

Ironically, I am writing a post about how much there is to say without saying anything specific. Still, I think it’s important to take a moment and think about this. Some of you are bloggers, and you know what I’m talking about. It’s easy to have a day or a week or longer without inspiration. But that doesn’t mean the well has run dry. And some of you aren’t bloggers, and you know there’s so much to say about your chronic illness but you probably don’t have a way of sharing it. The next time you feel that you could never explain your chronic illness to someone and you can’t understand why, just remember that I found a way to write 587 blog posts (over four and a half years) and I haven’t come close to running out of things to discuss yet. That’s a whole lot of information.

Someone is creating an anthology about chronic illness(es) (this post was written a while ago, but she sent an update recently to say that she’s still collecting stories, so you should consider participating!) and some people might wonder how you could write a whole book about them. But we know better. We know this could easily be a 50-part series. Because whatever else chronic illnesses are, they definitely aren’t boring.

Leave a Comment » | Expectations, Frustration, Isolation, Limitations, Raves, Symptoms, Unpredictable | Tagged: , , | Permalink
Posted by chronicrants

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.

17 Comments | Healthcare, Isolation, Limitations, Milestones, Raves, Relationships: Family & Friends & Dating & Sex, Support | Tagged: , , | Permalink
Posted by chronicrants

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