If The Fates Allow

I've always loved Christmas. I love the lights, the cold weather, finding the exact right gift for someone I love and then seeing their face when they open it, the smell of Christmas trees, and, most of all, the continuity of it all. I love that I hear the same songs every year, and I hang the same ornaments on my tree at age 34 that I did at age 4, and I make the same cookies that my mom made. I love that I know that, in my family, we always open our stockings first, and then all of our presents in one big rush. I love that, in these small moments, there *are* things that are just the same as they were when I was child, for just one brief instant in time.

After the end of the holiday season, I want to feel relaxed, loved, joyful, and excited to move forward into the new year. But today, I just feel tired. So tired.

I know that it's a rough time of year for many people, especially people who have issues with their family, but I've never considered myself one of those people. But I guess I am, now.

The older I get, the less inclined I am to bend over backwards to make people comfortable when those people don't take my comfort into account at all. But I still want to spend Christmas with my family, and my friends, and the people whom I love and who love me.

So I thought the best solution, the best way for me to make sure that I got what I needed and still got to celebrate with my loved ones, was to host Christmas here at my house. I would do all the work, go to all of the effort, just to have everyone together and spend time with each other. And it worked in a lot of ways. But it didn't make up for the issues that are there - and have been there for a long time. Actually, it just highlighted them, made them more evident and clear.

I think that may mean a huge change in my family going forward, and making that happen is going to take a lot of work, and cause a lot of grief, and create a lot of blowback. All of which only makes sense if I believe that I deserve to be in charge of my own life, and that I deserve to have my boundaries and my preferences respected. Which, on my best days, I think I do.

It's Okay to Be Affected

This afternoon, I went to get a massage - it had been a while, and it felt like a good time to do something kind for my body. As always, the massage therapist asked if there was anything she should be aware of as she was working on me - I told her that I was just there to do something kind for my body, but that my Crohn's was more active than normal and I was on new medication, which had side effects that were giving me trouble. (My new pills have made my skin extremely dry; no amount of drinking water or putting on lotion makes it better, and it's keeping me up at night. I haven't had a full night's sleep for the better part of a week.)

A sympathetic expression came over her face; "we'll take care of you," she said. And it was a moment of such comfort.

For most of my life, I've erred on the side of keeping information to myself. It's always seemed super important to me, for whatever reason, that anyone I'm interacting with thinks that everything is okay with me. It feels like a survival tactic - to always appear competent, in control, able to do anything, which means never letting on if something is wrong.

After my years of therapy, though, I'm learning to loosen that up - to be more honest, to share more. And I'm noticing how comforting it is to have those moments with people. Not always - sometimes people will react really strongly, in a well-intentioned way, to a point where I then feel on the spot to comfort *them*.

But in the moments like today, when I was honest with someone and they show me that they hear me and they wish things were better, it makes me feel a sense of relief - a sense that a possibility exists, somehow, that I don't have to carry everything myself.  And that, to me, is nothing short of a miracle.

Me Vs. Inevitability

I posted today on Facebook about my upcoming surgery for Crohn's, and I experienced something that I get a lot when people hear about the more severe elements of my Crohn's: people calling me inspiring, saying that they don't know how I do it, praising me for keeping so positive.

I honestly don't know how to respond to that. 

One of the weirder and less admirable traits of my personality is that I sometimes get deeply resentful about super basic things that I can't change. Like the fact that I have to have a job to get through life, even though literally everyone does. Like the fact that I keep having to do chores over and over again, and they don't just stay done. I have joked to my therapist that I hate entropy. 

But, for some reason, I don't get resentful over having Crohn's disease. Which is really weird, because it's one of the only things in my life that has negative effects on me that I couldn't have expected. 

I just don't really know how else to do it. Taking my meds, altering my eating habits, giving up alcohol, going to the doctor, having tests and scans done, getting surgery - of course I do it all. There aren't any other options that wouldn't just make my life harder. And, as far as having a positive attitude - I mean, I guess I do. But it's not like I'm putting on a happy face. At a certain point, I have to find the silver lining for myself.

Maybe that's how everyone I admire does it - maybe they all just do what they have to do and try their best to keep a smile on their faces. 

One Step at a Time

The last few weeks have been really hard. Extremely hard. 

1. My Crohn's is still causing me trouble - nausea, lack of appetite, abdominal pain. It's a major challenge to eat enough to keep myself fueled to keep my normal life going, which means I'm just tired most of the time.
2. My husband had a sudden attack of debilitating joint pain that required an ER visit and a week of not being able to drive. We still don't know what's causing it, which is stressful enough, but it's also really hard to keep the house going, and support my husband, while I'm at less than full steam myself.
3. My husband's parents were on a road trip throughout the Midwest, and actually stopped at my grandmother's house to meet her. I haven't seen my grandmother in nine years, since before my dad died, and it was very, very emotionally weird to have those two pieces of my life collide. It gave me a major emotional hangover of Dad-grief and grandma-guilt.

And it's not over. This coming week, I have a business trip for three days; the following week, I'll be volunteering at a major roller derby tournament, so I'll be in for three 12-15 hour days.

After that, I have surgery scheduled for Nov. 30th - I'm having a small bowel re-section again. (In other words, I'm having a piece of my small intestine removed.)

It's a lot. It's just a lot.

So I've been falling back on my old coping mechanisms - shutting down, hibernating, keeping my feelings locked down, just ducking my head and continuing to put one foot in front of the other. It's not ideal, but when I'm as tapped out as I am, it's what feels the most do-able. 

At this point, I think I've done everything I can to make this time in my life easier, and I'm just looking forward to those two weeks where I'll be recovering from surgery, and then ahead to 2017, to a fresh year and a fresh start. The most I can do is be kind to myself, take good care of myself, and try to get through. 

Introversion vs. Manners

This article came up on my Facebook feed today: Am I Introverted, or Am I Just Rude? by KJ Dell'Antonia.

Unlike most articles I read, I had a *super* strong reaction to it.

Background on me: Like the author, I do not suffer from social anxiety specifically (although I do see a therapist for a general anxiety disorder), and, also like the author, I was raised to have good social manners, to be polite, and to follow the rules of what makes a good guest and a good host. 

Both of my parents had pretty high expectations of my brother and me: my dad's were academic, and I mostly met them; my mom's were social, and I mostly fell short.

Mom is a social butterfly to a T - my dad used to say that you could drop my mom off on an alien planet, and if you came back three days later, she'd introduce you to all of her new friends. My mom is turning 60 this year, and is still in regular contact with friends that she met in the first grade. Social graces are very important to her, and she definitely passed those along to us.

So, between what I learned from Mom and what I got from being in a sorority for four years, I know the rules, and I am able to deploy them in real life pretty well, for the most part - I make eye contact and small talk with cashiers; I always say "please" and "thank you"; I mostly remember to introduce people if I'm not sure they already know each other; I can easily navigate a conversation with a bus seatmate or a coworker I don't know well.

But it's exhausting. It's not second nature; it requires me to draw on a lot of mental resources and requires a lot of focus. So if situations pop up in life where I can avoid those types of interactions, I will take that path of least resistance if I can. I don't think that's inherently rude.

The author asks, "In a contest between my manners and my preferences, am I allowing my preferences to win?" And that feels like a false dichotomy to me.

The article seems to be making two main points: that not engaging with people around us creates a more isolated and homogenous personal society (which I agree with); and that not participating in large group gatherings is inherently rude (which I don't agree with). It equates skipping fundraisers, coffee dates, meetings and school assemblies to "neglecting my friends, avoiding my fellow parents or letting my community engagements suffer." For me, that takes it a little far.

To me, it all depends on scale and expectations - is the gathering small enough that people will notice I'm missing? Is it the type of get-together where my absence will be noted no matter how many or how few people are there? If the answer is Yes to either of those, then prioritizing my introvert's desire for alone time would be rude IF I didn't RSVP to say I wouldn't be there. 

So, declining to attend a school fundraiser that I'm not involved in planning, or leaving a school assembly as soon as the planned content is over - those don't feel rude to me. Blowing off a coffee date, or skipping a work meeting - that's different. I think "rude" is an accurate way to describe those.

The article ends by saying: "Too many of [these excuses] boil down to just that one thing: We care more about ourselves than about the needs of others. That’s not about introversion. It’s just an ordinary version of selfishness."

I spent a long time thinking that caring about myself more than others was selfish - but I know better now. It's a balance. Yes, it's important to take other people and their needs into account - but not at the expense of my needs. I deserve to be prioritized just as much as anyone else.

Feeding My Heart and My Tummy

My husband and I have been married for almost 4 years, and have lived together over 9 years, but we rarely eat the same thing at the same time. Part of it is due to scheduling; part of it is due to preferences; part of it is just that we've never broken the habits that we had before we lived together.

However, every so often one of us will want to try a new recipe and, since recipes are rarely written for one serving, that means we'll have dinner together.

This past weekend, he made Chicken Meatballs in Thai Coconut Curry, with naan bread on the side, and he gave me a bowl for dinner on Sunday night. 

It tasted SO GOOD. I mean, my husband is a good cook, and I almost always enjoy what he makes. It also probably helped that I hadn't eaten much more than peanut butter toast, vanilla protein shakes, and shredded chicken for a few weeks, thanks to my Crohn's symptoms. But I hadn't eaten anything that delicious in a LONG TIME.

It also just felt really good to eat - I know that doesn't make much sense, but it was so comforting. It was warm and filling and prepared for me by someone who loves me. Not something I get every day. In fact, I'm planning on making more next weekend, just because eating it was such a great experience.

I tend to eat a lot of the same things, over and over again - to hit the macronutrient numbers that my trainer set for me, I have to really plan things out, and be consistent. It doesn't leave a lot of room for culinary flair. But especially now, when my symptoms are acting up and getting enough calories into me to get through my day is a challenge, it's worth the effort for me to give myself a good eating experience as often as I can. Because, despite what I often think, it really does make a difference.

"Beyoncé would be proud of you!"

I'm an anxious person by nature - a huge part of how I deal with that is creating routines within my daily life. When those get disrupted, I really struggle. It takes me more time and energy to do the simplest things, and of course the first things to fall down the priority list are the things that I do for myself.

After wrestling with my Crohn's symptoms a couple of weeks ago, I was so ready for everything to be back to normal last week. But then, the night before Labor Day, my husband started having abdominal pain that wouldn't go away - we spent Labor Day figuring out his appendix had gone bad and needed to come out. So we spent three days in the hospital. 

Five days after my husband's appendectomy, there was an Open Scrimmage scheduled with my roller derby league. Normally I wouldn't be able to participate in scrimmages - I've been skating for a year-and-a-half, but I still haven't cleared all of my Minimum Skill Requirements, which is a prerequisite for scrimmaging and bouting. But my league specifically designated an hour of this month's open scrimmage time for non-MSR cleared skaters - it was an opportunity that hadn't come along in the 18 months since I joined the league, and I didn't know when it would come around again.

I'd been looking forward to scrimmaging for *weeks* - after my week of being sick (and not being able to eat or work out properly), I had been planning to really fuel up and work hard for a week so that I could participate. But then came the Appendix Adventure, and I was even lower on sleep, protein, and skating time. I thought to myself, "there's no way I can skate in scrimmage" - I thought for sure I would be setting myself up to fail.

But something about it really tugged on my heart. I had had two weeks of struggling, two weeks of putting what I wanted last. I finally told myself that I'd scrimmage, as a gift to myself, as a gesture towards my goal of treating Present Sarah as well as Future Sarah.

So I went to scrimmage. I was SO NERVOUS. To psych myself up, I wrote "Beyoncé would be proud of you" on my left calf, and "Hulk out! Have fun" on my right. I made my husband help me write "FEARLESS" across my knuckles, to remind myself of how I wanted to be.

But, once I hit the track, all of my nervousness went away. All I felt was excitement. And I skated my heart out - I listened, and did what my teammates on the track needed me to do, and I didn't get a single penalty! It was one of the most fun things I've ever done in my life - I felt so strong and capable and powerful and present in my life, for *days* afterward. It all felt sort of miraculous, to be honest with you. 

I'm sure it will be a really long time before I forget that scrimmage, and how it made me feel, but I hope that I also remember what led up to it - me making a choice, one that felt like flying in the face of logic and lots of reasons why I couldn't or shouldn't do something, that was just for me, that was in support of just me and my goals and what makes me feel good. And that the result was super powerful and positive and rewarding, so maybe I should make that sort of choice more often.

Introduction to my Intestines

Fun fact about me: I have Crohn's disease. I started having symptoms in 2000, when I was 18; I was diagnosed in 2004, a week before I graduated college. My health has been up and down ever since - although mostly up. Overall, my Crohn's has had relatively little impact on my life, compared to some other people I've met and other stories I've heard. I've sat in treatment rooms across from people who have ports installed in their chest, which is the only way they can get nutrition into their bodies; I've known people who had to eliminate entire food groups from their diet. For me, it's mostly been about taking a lot of pills and navigating a lot of medical bureaucracy.

The big exception to that was 2010. In January of 2010, I started having Crohn's symptoms: abdominal pain, nausea, loss of appetite. Over the next several months, I switched medications, had colonscopies and small bowel exams, went on a liquid diet for two months, had a PICC line installed and was fed via IV for two months, and finally had two-and-a-half feet of my small intestine removed. It took nine-and-a-half months to get it all wrapped up, and it was one of the hardest times of my life. 

Since then, things have been pretty calm, health-wise. Last December, my husband and I thought it might be a good time to start thinking about having kids, and so we went to my doctor to talk about what that might look like. (One of my medications, in higher doses, is used to terminate pregnancies, so I obviously can't get pregnant while taking it - on top of that, we needed to make sure that my body could handle being off of my medications for the time it would take to have a baby.) So I had a colonoscopy and a MR enterography to check out the state of things. 

As it turns out, the state of things was not great. I had epic levels of inflammation, an abscess, a couple of fistulas - all signs that my current medications weren't working. 

The kicker was: I wasn't experiencing any symptoms. I felt fine. Which the gastroenterologist I saw up at the hospital told me was "shocking". And it was scary to me that so much could be going wrong with my body and I wouldn't have any idea.

So we decided to put me on a new medication, give it a few months to see if it would take effect, and then check again.

(This is actually a super familiar process for me - one of the constants of my version of Crohn's.) 

I had my follow-up colonoscopy and MRE in July - the good news was that the abscess and the fistula seemed to have gone away. The bad news was that there was still a lot of inflammation, and possibly a stricture. Which means that we need to either increase the dosage of my current meds and I'll probably need to have surgery again. 

Having surgery again is not so bad - it's not ideal, because ideally I would go ten years between surgeries. (There's a finite amount of small intestine for them to take out - once we get to that point, then I'll get an external small intestine to carry around with me, which is one of the things I dread most.)

But it's more the waiting and seeing that I struggle with. Obviously having a baby is on hold. I'd like to get a new job, but it doesn't make sense for me to look, because I want to keep my same insurance plan until my surgery is done. 

And now I'm having symptoms: abdominal pain, nausea, loss of appetite. I'm tired a lot because it's hard to eat enough to keep me going. It's gotten a lot worse over the last two weeks.

Another fun fact about me: I do roller derby. (I still struggle with the verb - saying "I play roller derby" seems deceptive, since I'm not actually skill-cleared and so I don't actually get to bout. "I practice roller derby" sounds like I'm doing something meditative and yoga-style. I don't know - still working on it. But I go to practice, and I learn, and I love it - I'm obsessed with it. And I'm slowly getting better.)

So I'm way more active than I was in 2010 - being physically active has never been something I wanted to do, or was able to do consistently, before roller derby, but now I skate 4-6 hours a week, plus weight training with a personal trainer twice a week. 

It's SO HARD to do that when I can't fuel myself the way that I'm used to.

This past week was the worst it's been in a long time. I had to skip all of my derby practices, and one of my weight-training sessions, and I really struggled to just get through my work day. 

It's so funny to me - how long I've had Crohn's disease, and I still forget the effects that it has on my life. 

Things I've Remembered This Week:

1) I have my life structured with just enough wiggle room for my normal life - I have enough space and time and rest built into my normal routine to get me through when I am not having symptoms. When I am having symptoms, everything needs to be re-evaluated.

2) My skill of just pushing through things is not helpful, particularly when my symptoms are active - unfortunately, my Crohn's is not something that will just "get better" or "go away" if I don't respond to my body's signals. Things will just get worse until I *have* to stop, which I don't really want to do. 

3) I'm a part of a lot of things now that I *want* to be doing - in 2010, there were times that it was almost a relief that my symptoms were flaring up, because it was a great excuse to not do things (like going to the gym, eating healthy food, leaving the house, etc.) that I didn't really want to do. But I don't feel like that now. I *want* to go to practice; I *want* to go work out with my trainer. So it's on me to make sure I treat my Crohn's symptoms in a way that lets me keep doing those things.

Let's See How This Goes...

When I do these things, I'm not smiling or beaming with joy.

I'm not happy.

In truth, when I do these things, I'm often suffering.

But I do them because I find them meaningful. 

I find them compelling.

I do these things because I want to be tormented and challenged and interested. 

I want to build things, and then break them. 

I want to be busy and beautiful and brimming with ten-thousand moving parts.

-The Oatmeal, How to be perfectly unhappy.

This all sounds so good to me.

I don't know if I can ever be "happy", but I know that I can build a busy, beautiful, meaningful, compelling life. 

I really want to try.

I want this to be a place where I talk about it - where I process my feelings, where I celebrate small victories and navigate big challenges, where I can be honest with myself and be open without worrying about holding up this image of myself that I show off to the world.

I don't know if it will work, but I want to try.