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.



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.

Chronic illness and self esteem

January 25, 2016

It can be hard to maintain your sense of self, much less feel good about yourself, when your whole life gets flipped upside down.

I didn’t have any self esteem problems around my chronic illnesses in the early days. That was partly from denial, partly from the illnesses not having too big of an effect on my life, and partly from having a wonderful mother who raised me to be full of confidence and self esteem.

I’m not sure when that changed, exactly, but I’m pretty sure it was around the time I had to stop working. Suddenly, when people asked “What do you do?” – a very common question to ask someone you’ve just met around here – I didn’t have an answer. I didn’t have a job. I wasn’t earning a living. I was constantly unsure of when I might have to move. I couldn’t do much activity. I had a ton of food restrictions And on top of all of that, I just felt like shit.

There were times I wanted to be there for my family or friends and couldn’t be. I couldn’t travel anymore to visit the ones who were farther away and I didn’t always feel up to doing things with the ones who were local. I wondered “Why would anyone want to date me?” even while I knew that was a horrible frame of mind.

Now I’m on the other side of that. I did some small bits of volunteer work from home. I found ways to be there for my friends that required less of me physically. I used the phone and video chat. If a friend needed help with something, I would research options for them online, from the comfort of my couch. I focused less on all the things I couldn’t do and more on the few things that I could. I realized just how many different interests I have, even if I can’t work on them every day. And I started to wonder “Why wouldn’t anyone want to date me?” I started to remember what makes me so great.

But today was the real deal. Today it really hit me. A friend texted me about wanting to set me up with a guy she’d met. She told me a bit about him. Then she said that she’d told him I have chronic pain. She’d told him I can’t eat gluten. She’d told him these things and I hated it, but not in the way I used to.

Not that long ago I worried about telling anyone about my health issues. I wouldn’t have wanted him to know because I was so insecure. I wouldn’t have wanted him to only focus on my health issues, and I would have assumed he would because focused on my health issues. I would have assumed they’d be a problem because I saw them as a problem. Today was different. Today I didn’t want him to know because I didn’t feel that should come from someone else. It should come from me so I could present it properly. I didn’t want him to focus on it because I wanted him to see all the awesome stuff about me first. I didn’t want him to think I was only my illness because no longer think that I’m only my illness.

He called right before I wrote those last few paragraphs. We had our first conversation. He did bring up the pain and gluten stuff. I said a bit, but I mostly brushed it off. Before I would have brushed it off because I was scared to talk about it. Today I brushed it off only because there were more interesting things to talk about.

Yes, my chronic illnesses are a huge part of my life. But they aren’t the only part of my life. They define big parts of me. But they don’t define all of me.

I know better than to assume my chronic illness-related self esteem issues are 100% in my past. But I hope they’re mostly behind me. And when they come up again in the future I’m going to reread this. Because we all feel less than stellar about ourselves sometimes, and if that happens from time to time it’s ok, but it shouldn’t be happening all the time. If it does, we need to find a way out. For me, that way is to help other people because it makes me feel so much better about myself to be able to do something for someone else; and it’s also to have a hobby that has nothing to do with my health, because that focus not only gets me out of my own head, but it gives me something to discuss with other people that has nothing to do with chronic illnesses.

What about you? What makes you feel better about yourself? And will you be doing more of it in the near future?

Standing scared on the edge

November 20, 2015

It was always the same. The instructor was telling me to jump. I could feel everyone’s eyes on me. I knew it was safe. But I was terrified.

Some kids love jumping off a dock and into a lake. Those kids probably

5-9-2012 10-20-06 PM

Wish I could swim like these cuties!

know how to swim. Those kids probably aren’t scared of the unseen mysteries beneath the murky surface of the water. I, on the other hand, wanted to stay safe and dry on the dock. No such luck.

I did eventually learn how to swim. One day I was standing at the edge of a pool talking to someone, and a kid pushed me in as a joke. I had to be rescued. The next day, I finally learned enough to stay afloat. But in general, I’d rather learn how to stay afloat without feeling panicked as I sink to the bottom of a pool.

Now I’m standing at a different kind of edge. It’s just as safe (mostly but not completely) and just as terrifying (very.) I’m about to start a small business. I decided to do this months ago, but I wasn’t committed to it. This week I decided to commit fully to giving this a try. I might fail, but I have to try.

I still don’t feel like I can commit the kind of time necessary for this. I know someone who has a new baby and works a full time job and is starting a similar business, yet she’s finding the time. But then, she doesn’t have brain fog, chronic pain, chronic fatigue, and a huge number of medical appointments to deal with. Still, I should be able to put in at least a little bit of time.

Ok, I know I’m being a bit vague about the business. That’s partly because I want to maintain my anonymity here but also because it’s really irrelevant. I plan to write and sell a short book (I’ve written the first draft but still have a lot of work to do on it.) I’ll create a blog. And I’ll try to sell the book and other things (maybe an online course?) to people. The key is that I’ll be working my own hours. It will take twice as long for me as it might for someone else, and I have to be ok with that. I might plan to work 3 days this week and manage 5. Or it might end up being only 1. Or none. And that will be ok.

I’m worried about the impact on my benefits, especially social security, at the beginning. But then, I also know that I can’t survive on benefits indefinitely. Right now I’m taking money out of savings each month to make ends meet. That’s fine for now, but one day those savings will run out, and then how will I get by for the next 4 decades? No, it’s better to not have to be on benefits at all, to cover my own expenses with my own business. So I’m going to try.

I face my fears every damn day with these illnesses. I worry about my health in ways most 30-somethings never even consider. It’s time to face a different kind of fear and take the leap. I don’t know how to do this, but maybe I’ll find a way to stay afloat anyway.


That sinking feeling

October 9, 2015

I’m sorry I haven’t written in a while. I’ve thought about it but, well, life’s been a bit rough lately. I’ll be writing about it one of these days, but I’m just not ready it. So instead, let’s talk about the phone call I just received 15 minutes ago.




Hi, this is H from Dr. Z’s office. Do you have a moment to talk to Dr. Z?

Oh boy.

I’ve been Dr. Z’s patient for 10 years now, and this is the first time his office has ever called me for anything other than rescheduling an appointment. I immediately thought about the bloodwork I had done last week. Could it really be that bad? I’m seeing him in two weeks; what couldn’t wait?

I’d had a few things tested it. As it turns out, the concern was about my thyroid results. Unfortunately, he doesn’t test the Free T3, which I think is the most useful. Still, my TSH was very low. It could have been worse, but it was definitely too low. I’d raised the med during the spring and summer. I’ve read that some people need to make changes seasonally and I guess I’m one of those people. I’d completely forgotten about it, though, until a few minutes ago. Apparently, I need to lower the dose again.

So why did he call? Because at these levels, I’m at risk of being hyperthyroid, which means having an overactive thyroid. That would put me at risk of all sorts of things, include heart problems. You don’t want to mess with that shit! I’ve had low numbers before, but never this low. So he wanted to check on me.

Thankfully, I’ve done enough research to know what the symptoms of hyperthyroid are, and I’m not having those. Well ok, I’m having some anxiety, but it’s a very specific kind of anxiety that’s completely warranted, but I’ll get to that in a future post. I’m not jittery, my heart isn’t pounding, I’m not shaking. So I’m ok. For now. But I better start figuring out when to lower my thyroid dose.

There are people who never have to worry about that feeling. They never get medical tests. Or they get tested for relatively harmless things that are easily cured. They don’t know that sinking feeling of hearing that a doctor wants to talk to you about recent test results.

I’ve had that sinking feeling many times before. Sometimes it worked out ok (like when the biopsy showed I *didn’t* have breast cancer) and other times not so good. And those not-so-good memories are why I get the sinking feeling in the first place; because I know it really might be bad news.

Today I’m lucky. Today it’s not so bad. Today I know what symptoms to watch for and I know that I’ll be just find as long as I take the right actions.

I just hope I’m as lucky next time.

Learning it’s ok to cry

September 11, 2015

A couple years ago I wrote about the fact that I don’t cry much about my health situation but I wasn’t sure why. By contrast, I know exactly why I don’t cry from the pain itself, and that’s because it started when I was a kid, and I learned fast that the adults in my life thought that I was just trying to get attention. If I cried, they thought that even more. So I didn’t cry.

Fast forward to my 30s, and I still don’t usually cry from pain, frustration, or fear. I cry for other reasons – a sad book, the death of a loved one, and such and elicit tears, even though health issues rarely do.

In the last year, though, I’ve been making more of an effort to let myself cry when I want to. It’s cathartic, so why not? I do so much to try and help my health, both physical and mental, so shouldn’t I be willing to cry?

I started with simple things: I didn’t try to stop myself a few weeks ago when I was reading a sad scene in a book. Before, I would try to hold back the tears and fail; this time I didn’t try to hold them back. I let a few tears escape when I was dealing with a difficult health decision. It was a good start. And then came the real test.

When I was in the ER last week the pain was horrible, but even worse was the fear. My anxiety around doctors has been getting worse, and I was practically panicked at the idea of a doctor I didn’t know giving me stitches. What if he messed up? What if there was a broken bone they hadn’t noticed on the x-ray? What if he somehow hurt me? On top of that the pain was intense. For a while, I tried not to cry out of habit. Then, finally, I had an epiphany: it was ok to cry! This doctor didn’t know me or my history. I would never see him again. Plus, crying in this situation was not only acceptable, it was expected. I mean, I had a big cut that had been bleeding for hours and the doctor was dabbing at it to get away enough blood that he could see it clearly. Of course it hurt like hell! Why shouldn’t I cry?

So the tears came. They poured down my face and I did nothing to stop them. I didn’t make a scene. I didn’t yell or scream or sob loudly. I didn’t exaggerate but I also didn’t hold back. And you know what? It felt so much BETTER to let all of that out!

This is a long process. I need to unlearn more than 20 years of habit, but I know I can do it. I just need to make more of an effort to cry when I feel the need to cry. Wish me luck!

Does this sound familiar? Have you experienced anything similar? Please comment below – I’d love to hear your story!

Four years later

July 21, 2015

My physical therapist asked “How does that feel?” It took me a moment to answer, because I had to first block out of my mind the pain in my right wrist, in three toes on my left foot, in four toes on my right foot, and in my left knee. Finally, I had a sense of how my neck felt.

I started this blog 4 years ago today. It was very different then, in so many ways. I was very different.

Back then, I was amazed if 1 or 2 people read my blog each day. Today, I get at least 20-30 readers per day, sometimes over a hundred in a day, plus over 200 who get the blog emailed to them and more who read it in Feedly and other

Where readers have come from in recent months

Where readers have come from in recent months

readers. This blog has had about 33,800 page views…. That’s not much compared to some blogs, but I’m very happy with it. After all, the goal was never to win any popularity contests, but to have a small community. I have a bunch of twitter followers, too. For the first few months I blogged every single day. I still don’t know how I managed that. Now I average 2 posts each week and that feels about right, but I never pressure myself to write and I never worry about keeping any kind of schedule. Best of all, I have an active audience who often comment on what I write and on each other’s comments; that’s what I wanted from the beginning.

And then there’s me. Four years ago today I was working at a job I didn’t particularly like, going in at 9, leaving at 5, and barely surviving it. Every morning I struggled to get ready for working, have to lie down and rest for 20 minutes after my shower just so I’d have the energy to put on clothes. I came home every evening and did nothing but watch tv, eat, and write one blog post. Gone were the days of socializing after work. I started to make mistakes at work. I was always exhausted and I didn’t know why. I was in more pain than ever. I only felt decent when I was on Prednisone, but when I went off that, the fatigue and pain returned full force. So did the gastrointestinal symptoms that had gotten somewhat better while I was on the drug. I had no answers, and my doctors didn’t know what was causing my symptoms or how to help.

Now I have some answers, though probably not all of them. I have taken charge of my life. I no longer turn to doctors for all the answers; I do my own research. I still deal with fatigue and pain, but my gastrointestinal symptoms are almost entirely gone. I understand the workings of my body much better than I did before. I’m not working, or even trying to work, and that takes away so much pressure and stress. On the other hand, it also leads to less financial security, and that does have me worried. I no longer travel, but I have learned to be happy and content where I am. In fact, that’s the biggest change: despite all of my health problems and the other areas of my life they have affected (money, dating, travel, and so much more,) for the first time, I feel good about who I am and about where I am in my life. I am happy and content in a way that I never was before. I take time for introspection more than I did 4 years ago and I have learned more about myself through this long process than I ever would have expected.

If you’ve followed this blog for a while, you’ve watched me struggle to figure out which foods I couldn’t eat, to start a gluten-free diet, to deal with insensitive jerks, to find new doctors, to beg for tests, to cajole for new medications, to deal with dating, to find ways to tell friends and relatives and acquaintances and strangers about my health. You’ve read my political opinions, my frustration, my anger, my joy, my views on so many topics, and my issues with everything from sex to diarrhea. It’s been an interesting journey and I’ve been so grateful to have you here with me as I take it. It’s been rough, too. Still, I see some overall improvement. I get frustrated a lot of the time that the improvement is so slow, and that for every 3 steps forward, I end up taking 2 steps back. Still, I’m grateful for any improvement I can get.

So I’m looking back over these past 4 years and it makes me wonder: where will I be another 4 years from now? Only time will tell, but I’ll do my best to head in a healthy, safe, positive direction.

What about you? How has your situation changed over the past 4 years, 4 months, 4 weeks, or any other time period you want to think about? Are you trying to change direction? Or are you able to forget about the past and be present only in the moment? (I’m still working on that myself.) How are you doing?

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