Trying not to chicken out

January 28, 2016

I’m supposed to travel today and I really don’t want to. And I’m sad about that, because I know I should be excited. But then, I’m trying to get away from shoulds anyway….

We’ve been friends for over 20 years. At first I would visit her. Then I’d visit her and her boyfriend. Then I’d visit her and her husband (same guy.) Then I’d visit her, her husband, and their kid. I loved all of these visits. Sure, they were different. The activities were different and the atmosphere was different, but I always had fun. In the early days I’d fly to visit her. Once we both flew to a city between us, stayed in a hotel for a weekend, and had a fabulous time exploring a new city. For the last 8 years I’ve been able to drive to visit her, which is fantastic. Since I live near her parents, she stays with them when she comes to town and we get together alone or with friends or with her entire family and we always have a fantastic time. Always.

But a few years back, visiting got harder. My health got worse. I’d visit her, her husband, and their two kids, and I’d be thoroughly exhausted. Each visit got harder, just like other things in my life got harder. But still, I visited. Even though each time, I felt the energy draining out of me.

Then I stopped visiting for a long time. I didn’t want to stop, but I just couldn’t manage it anymore. It was around the time I stopped working. In fact, my visit to her house was the last trip I made before I left my job. We went apple picking and had a great time and by the time I got home, I was a mess.

Now I try visiting once or twice a year. Last summer I visited her and her youngest, while her husband was out of town with the two older kids. That was tiring, but not too bad. It was summer, and I feel worse in the summer, so there was that. And now it’s winter, and I feel better in winter, and I’ve got my new sleep machine helping me. But the idea of 3 days with her, her husband, and their 3 kids, is just exhausting to consider, never mind actually doing it.

I don’t want to go. I want to stay home. But I want to see my friend. I wish I could visit for a day, but it too far of a drive. I wish I could stay in a hotel where it would be easier to rest, but that’s not in my budget. I wish I was health, but that’s just not my reality.

She’s told me several times that the kids are really excited to see me. She’s asked what I’d like to eat while I visit. She’s a great cook, and does a wonderful job of making gluten-free foods that I can eat (while also avoiding all of my other trigger foods.) We’ve decided that I will go out with her and the kids either in the morning or in the afternoon each day, but not both. We’ve learned that I can’t handle both. We have it all planned out. But I’m still nervous.

I tried asking myself, “What’s the worst that could happen?” Well, that’s a bad question to ask. I know what could happen. I remember when I visited last winter and I was so sick that first night. Like, the maybe-it-would-be-easier-if-I’d-just-die kind of sick. It was horrible. I’ve felt that way before, but dealing with it in someone else’s home was so much worse. Of course, that’s not the worst, but it’s the most likely. And I can’t stand the thought of it.

It’s almost noon and I’m still in my pajamas. I need to shower, get dressed, eat lunch, pack up my bag, then drive. That will use up most of my energy for the day. And then there’s dinner with the family and 3 kids all wanting my attention at once because I haven’t seen them in months.

I love them. I really do. And I’d love to see them. But I don’t want to go.

Does this sound familiar to you? Please share your experiences with this kind of thing.

P.S. Yes, I have the option of not going. But I want to see my friend and her family. So I’ll go. But I’ve promised myself that if it’s too much, I’ll leave a day or two early. I just hope tonight is ok….


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?


And no one knew I had health problems

January 18, 2016

I realized it part way through lunch, but I figured it was temporary. By the time everyone was done eating, it was nagging at me. It felt weird. And on the way home, it felt like something was missing. But when it happened again the next day, I began to wonder if this was how I was supposed to be feeling.

I went to two different potluck lunches this weekend. One was with people I’d never met before (I won’t bore you with the long story of how that came about) and the other was with a mix of friends, acquaintances, and people I didn’t know. And both times, I walked away without talking to people about my health problems. What the….???

Believe it or not, I’m one of those people who talks a lot. (Those of you who have been reading for a while probably just broke out in laughter. Of course I talk a lot.) I also talk openly. Sure, some things are private, but not as many as you’d think. If you read my older posts on this blog you’ll see the progression. I used to try and hide my health problems, and at some point I Just couldn’t do it anymore. It was exhausting, both physically and emotionally. So I started hiding less and sharing more. The more I did that, the better I felt, so I just kept on doing it. Put those two things together and pretty much everyone I meet figures out that I’m bi, that I’m Jewish, that I have health problems, that I love to read, and a ton of other random stuff about me. It’s not like I shout these things from the rooftop, but I make a random comment and it’s obvious.

Thanks to a combination of things I’ve been feeling a lot better lately (woo hoo!!) That’s how I was able to go to lunch two days in a row. It’s also how I was able to get through both lunches without talking about my health!

I was completely shocked. At the first one, one someone offered me food I just said thanks, but I have a lot of food allergies so I brought my own separate lunch. That’s it. No talk of Celiac or other autoimmune issues. We talked about a lot of things where my health never came up. It was weird.

The next day’s lunch was different. I should say that I didn’t talk to anyone about my health who didn’t already know about it. It did come up with one friend when we talked about me writing for this book project (you should totally write for it too!) Another friend asked how I was doing with my recovery from the surgery I had a few months ago. A couple people who were standing with her asked about it. But that really has nothing to do with my chronic illnesses. Aside from that, my health didn’t come up. Again, when people offered food I just said I had food allergies and I’d brought my own. That was it. It was straaaaange…….

I sort of liked it, but it also felt sort of wrong. I loved not standing out in the way that I usually do, even though that will take some getting used to. I liked being “normal.” It was a real treat! But the thing is, it also felt wrong because this is who I am. It’s not all of who I am, but it’s a big piece. In the last 4.5 years I’ve written 582 blog posts here. I’m working on a couple of other projects. It affects my sleep, my eating, my activity levels. It affects how much I date (or not), whether I work (or not) and how much time I spend with friends (or not.) This is a really big part of me that these people now know nothing about.

Then again, I only just met them. If I spend any significant amount of time with anyone, they’ll know. They’ll have to. Some days I can’t hide my symptoms even if I want to. Some days I can barely function. Still, this was a new experience. It’s been years since I got through a meal, party, or gathering without bringing up my health at all, and it just happened twice.

Huh. Maybe I should buy a lottery ticket. Because clearly something weird is happening.

What about you? Do you find your health becoming a topic of conversation at gatherings? Or do most new people you meet not know you’re ill (if your illnesses are “invisible”) or not know the cause (if they’re “visible”)? Please comment below. I’m curious to know how this goes for other people, and I’m sure other readers are curious, too.


Labels: the bisexual-chronic illness connection

January 13, 2016

Society likes labels. It likes to put us into boxes. Sometimes those boxes overlap like a rectangular Venn diagram. Sometimes they’re similar to someone else’s array of boxes.

A lot of us have complicated relationships with our labels, and I think a lot of that has to 1-13-2016 4-32-57 PMdo with where the labels come from. I was working on a project recently where someone asked, “I have ____. Does that count as a chronic illness?” I was horrified. Why should anyone else define your condition? If you feel you have a chronic illness, isn’t that enough? And yet, I have seen it happen over and over again. Someone is told they don’t really “belong” in a group.

But labels can also be empowering. They can help us quickly convey something about ourselves to others. They can help us learn about the group that we belong to. And one of the things I find most important: they help us find community.

You’re a queer bisexual woman with a chronic illness too!?! Awesome!!

Yes, I’ve heard myself utter those words. It’s so great to talk to someone I can relate to in multiple ways. I love using certain labels because it helps me find my peeps. Totally cool.

What’s not so cool is when other people choose to label me or anyone else. It’s also not cool when they choose to redefine my labels. I’ve heard people say, “Bisexuals are only interested in threesomes.” When I say that’s not true, they disagree. Um, wouldn’t I, as a bisexual, know that better than you, a monosexual?

I’ve heard people say that if you’re not in a wheelchair then you don’t need to use a ramp. When I try to explain why that’s not true, they don’t want to hear it. They’d rather hold on to their preconceived notions than actually learn they might not be 100% correct about something.

It can be infuriating, that’s for sure. And as someone who has a chronic illness and is bi, I’ve been amazed at how much overlap I have seen in these two communities. Both chronic illnesses and bisexuality are often (though not always) invisible to the casual observer. Often, people pretend we don’t exist, either individually (“you’re dating a man so you must be straight now”) or as a group (“there’s no such thing as fibromyalgia, it’s just a made up condition so the pharmaceutical companies can sell more drugs.”)

People like to throw their labels onto us. As if I don’t know if I have chronic illnesses or not. As if I shouldn’t be allowed to define my own sexual orientation.

We both have our labels misunderstood often. Who hasn’t heard some version of “it’s not like that will kill you” when it really could, or “bisexuals aren’t capable of monogamy because when you’re with someone of one gender you’ll always be missing the other gender”? (This last one has the added bonus of marginalizing anyone who doesn’t fit into the gender binary.)

And let’s not forget the joy of having someone condescendingly explain who we are to us. I won’t even bother with a sample quote because it’s just so heinous.

There’s discrimination, and sometimes it’s based on labels that don’t apply to us but that someone assumes describe us.

Then there’s the joy of having someone argue that the label we choose isn’t “right” in some way. Like being told your condition isn’t really a chronic illness. Or the ever-popular, “I don’t think you’re really bisexual, you’re pansexual.”

But wait! Don’t despair! Because having these labels is also truly awesome!

If I didn’t use the term “chronic illness” how would I have found all of you? We all have such different diagnoses, symptoms, and life situations. I could write a blog about having Hashimoto’s Disease, but I wouldn’t get to talk about Celiac. I could write about Celiac, but what about PCOS? Anyone with a different diagnoses probably wouldn’t bother to read or comment. Using “chronic illness” allows us to all connect, and that’s magical.

I feel the same way about calling myself bi. Sure, it means that sometimes I’m shunned in lesbian spaces. But it also helps me to find other bi folks. It means people don’t look at me askance when I mention that cute girl over there, even though they knew I was dating a guy last year. We can share stories and music and movies and books. We can simply find each other.

And don’t forget the research. The health research around chronic illnesses is probably somewhat familiar to you. But did you know about Bisexual Health Awareness Month? The research around health disparities for bisexual folks is super important, but how could anyone conduct that research unless people self-labeled as bi?

I could go on for days about the similarities in the way labels affect both the CI and bi communities so for now I’ll just say, thank goodness for our labels. Despite all of the problems with them, they’ve help me to find some incredible people, and I’m so grateful for that.

Now, it’s time to go fight some more of those damn stereotypes!

How do you feel about labels? What are some of the labels you apply to yourself? I’d love to hear from you in the comments!


Major money success: I didn’t lose money this year!

January 11, 2016

I’ve played with the numbers from every angle, and I’m still not sure how this happened. This truth is that it almost didn’t.

Let’s face it, SSDI (Social Security Disability Insurance) doesn’t pay a IMG_20160111_110023.jpgwhole lot, especially when you didn’t contribute for very long and you never earned a big salary. Especially when you live in an expensive city with high rents. SNAP (food stamps) almost covers my groceries each month. Almost. Fuel assistance helps with the utilities, but doesn’t cover them completely. Health insurance (after I pay the premiums) covers most of my costs, but I still spend a whole lot more. I am so grateful for all of these, but after I added them all up, I was still far short of what I needed.

After all, I still have to pay for those health costs and utilities, car expenses including insurance, household stuff like dish soap and toilet paper, and so much more. I spend very little on luxuries like gifts, clothes, or a meal out with friends, but there’s still the occasional purchase.

I’m super lucky. Last year my parents bought me a new laptop. Back while I was still working I bought a super warm coat and a low-end-but-nice sofa. I have savings from back when I worked. But those savings aren’t enough for the next several decades so I want to avoid touching them if I can.

I’ve been watching my bank balances. Down and up, up and down. I did some consulting work when I could. I sold random stuff I had around the house that I didn’t need or want anymore. I sold some of my knitting. I did a bit more consulting. Some months looked really good. Others looked terrible. I hated the uncertainty.

Back in the days when I worked, I had a steady paycheck. Those days are gone. I want to work now, but that income would still be unpredictable. And right now, it’s completely ad hoc. Still, when I looked at the numbers (yes, I’m a numbers geek) in December, I could tell I was close. Was it possible? Could I actually BREAK EVEN this year?

I was nervous when I went over my 2015 accounts the other day. I blinked. That couldn’t be right. I went over it all again. It was true. I came out ahead! Yipee!!

I’m very lucky. I know not everyone can do this. I know I couldn’t do it last year or the year before or the year before that. But it I did this year, and I’m grateful for that.

So how did this happen? Well, I had several consulting clients. I did some work that I didn’t particularly enjoy, but I did it for the money. This including knitting some things I didn’t enjoy knitting, helping someone set up a WordPress blog (I really hate doing the back-end work, but others do too, so they’ll pay for it,) and listing things on ebay, amazon, and craigslist (I hate dealing with that shit) that I’d have happily given away if I didn’t need the money. I did some other work that I did enjoy, like knitting awesome projects and consulting on things I enjoy. But it was all worth it.

Of course, that alone didn’t do it. This is where the luck comes in.

First, I had savings from back when I worked. I had invested those savings. And those investments earned interest and dividends. Now, this wasn’t a huge amount of money. And it’s not money I’ll spend yet – all that interest gets immediately reinvested. Still, it helped me get a lot closer to breaking even.

With all of the benefits, the work I did, and the investments, I was so close to breaking even. This is where more luck comes in. My parents gave me a large birthday check earlier in the year. Then they gave me a large Chanukah check last month. And those put me over the top. Thanks Mom and Dad!

And let’s be honest, being able to work at all feels pretty damn lucky right about now. Sure, I did a lot of research and put in a ton of effort to improve my health to this point. But we all know that sometimes all of that effort and research doesn’t help. I’m glad that this time it did.

So benefits + work + investment income + gifts = coming out ahead! Without any one of those, I wouldn’t have made it.

There are no guarantees in life. I have no idea if I’ll break even in 2016. I’m going to try to start a business and maybe it will work and maybe it won’t. What I do know is that I somehow made the money work out in 2015.

For that I’m grateful.


Should I sue?

January 6, 2016

The accident was totally my fault. I was at home. I was alone. It was my knife. I was the one who knocked it off the counter. It struck my own foot. So I’m at fault. Simple, right?

Maybe that’s why it never occurred to me to sue anyone. It was my fault, 2015-09-05 18.36.09after all. And I incurred almost no expenses. My insurance covered just about everything. And it’s not like I’m very litigious anyway. I’ve never considered suing anyone before, even when I probably had cause.

But ever since someone else suggested it to me, I’ve wondered: maybe I should? Because the doctor really did screw up. Twice. His colleagues also screwed up. This wasn’t complicated. It was actually pretty basic.

A knife cut my foot. There was a lot of blood. An ambulance brought me to the emergency room. They had me move my toes and took x-rays. They said there was no nerve damage. They said my tendons weren’t cut. They said I was lucky.

And they were wrong.

10 days later I got the stitches out. I told the doctor, coincidentally the same one that I’d seen in the ER (he was working in my primary care doctor’s office that day) that something seemed wrong. He said not to worry about it. He said I was fine. He said to give it time. Another doctor was there too. Neither doctor tested my tendons.

They were wrong.

2 tendons were cut completely.

Tendon repair surgery is supposed to be done within 10 days of the injury. 2015-10-17 11.45.26Mine would have been done that soon if it had been caught in time. Instead, it happened 8 weeks later. 8 weeks! In that time the gap in the tendons widened. One tendon began to heal to tissue, so that it had to be surgically cut away and elongated. This meant a more difficult recovery. It meant 2 extra months of dealing with this. It meant a lot of emotional anguish for someone who already has a lot of anxiety when it comes to medical issues. If the surgery had been done when it should have been, and with the shorter recovery, I would have been mostly healed after 8 weeks, instead of just starting with the surgery. Now, more than 4 months after the injury, I’m mostly healed, but not 100% yet.

And I admit, I’m bitter about the way I was treated in the ER. I wasn’t given crutches, painkillers, or even a wheelchair to leave. They were completely dismissive. In the doctor’s office, too, they were dismissive.

My surgeon thinks I will heal completely. So it’s not like there’s permanent damage. Except for the emotional impact, of course. But then, isn’t that what it means to sue for distress?

Suing could be stressful. It could be a huge pain in the ass. I might end up with nothing. And even though this doctor screwed up big time, I don’t want to destroy his career over it. Then again, it was a horrible experience for me. And he screwed up.

So now I’m wondering, should I sue?

What would you do?

Side note: If you’re in Massachusetts and you know of a good attorney for this type of thing, please comment here or email me at msrants@gmail.com. I’m hoping an attorney can tell me if it’s worth it (but if they say yes, I’ll still have to decide if I should go forward.)


Should I try to do more?

December 28, 2015

There’s no guide. Not only do we have to decide for ourselves what’s “right” but the only way to figure it out is by trial and error. And who wants to risk the error part?

Friends have been pressuring me to visit them more. Part of me feels like I should be able to do it. But then other parts of me think it would be a very bad idea. But maybe I should try anyway? I used to fly 3-5 times each year. Now my last flight was 5 years ago. It’s time. But is it?

I’ve done a lot these last few days. Today is my day to rest. But I look at my “to do” list and there’s so much that I need to get done. So maybe I should get groceries today. Or maybe that’s too much. But I’ve been doing better lately, so I should try to do more. Or maybe that’s too much and I’ll regret it.

I know from experience:

  • If I don’t do enough, my abilities will atrophy, and I’ll feel capable of doing less.
  • If I do too much, I’ll feel horrible, it will take me days or weeks to recover physically and longer to recover emotionally.
  • Either way, I won’t know if it’s too much or too little until later, after it’s too late to change anything.
  • The doctors can’t help me with this. It’s up to me to decide.

Crappy options, right? There’s a sweet spot, an amount that’s just right. I’m looking for that, but I have no idea how to find it.

I think about how much more I used to do before I got sicker 4 years ago. I worked full time, traveled, did errands, went out with friends. I think about how much less I did 3 years ago when I socialized very little and didn’t leave the house more than 2 days in a row, if that. I think about what my friends with chronic illness can do. I think about what they can’t do. And I still don’t know what I should be doing.

I wish this was a conundrum I faced every few years, but it’s not. It’s constant. Every few months this seems to come up. I’m super aware of it now. I feel horrible in the hot summer months, so I spent that time at home, resting, trying to get by. Then I had an accident and there went autumn. Now the new year is approaching and I am just beginning to walk around again after 6 months of reduced activity.

I need to do more. I’m in recovery from surgery, so I’m supposed to walk more and get back to where I was before. But where was I “before”? I honestly don’t remember. Am I aiming for where I was at right before the accident? That was summer, and I usually do less in the summer. Should I am for my typical winter activity level? Should I push to do as much as I can? But I know that’s a bad idea – doing as much as I can in the short term will mean burnout in the long term.

Maybe going grocery shopping today is doing too much. Or maybe staying home today is doing too little. There’s no magic answer, no one to tell me what’s right, no official guidelines. I just have to guess.

For now I’m going slowly. I’m telling my friends I won’t be getting on a plane yet. But I wonder, maybe this is the year that I finally will? Or is that too much?

How do you figure out what you can and can’t do when the boundaries keep changing? Please share in the comments. Maybe one of your tips will help me and others!


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