I Cried in Public and Lived Through It

So remember how a couple weeks ago I was all “oh, let’s not be so hard on ourselves! Be self-compassionate?” Let me tell you a little story that happened the same day. THE SAME DAY.

After a leisurely morning, my husband and I decided to go to an early lunch, out of the house. I was calm and relaxed, we ordered our beverages and started chatting about what the day had in store for us. My husband wanted to go to a party later, but I didn’t. This is not unusual for us–my aforementioned anxiety issues don’t lend themselves well to parties, especially where I am not well acquainted with the party-goers. I do much, much better at small gatherings, and even better when I am well acquainted with a few people in attendance.

When I told my husband that I didn’t mind if he went without me, I meant it. And I even meant it when I said he would have more fun there without me, but before the words even came out of my mouth, the tears had started falling. Not the tiny, stray tear that sometimes escapes when you get a little emotional; it was a river of big, fat tears rolling down my face. In public, at a place where we eat on a semi-regular basis. Then our food came, and our server tried to not make eye contact with us as I wiped my face and tried to look nonchalant even though it was pretty obvious that I was crying my eyeballs out. It took me a minute to regain my composure, and then another minute to figure out what exactly that sudden outburst of tears was all about: I was embarrassed and ashamed.

For months and months I didn’t have a choice about whether to go out or not, and here I was, physically able, and asking my husband to go without me. I knew that he would have more fun without me–he would feel more free to mingle and not worry about whether I was feeling physically or mentally uncomfortable, and he could leave as early or as late as he wanted to. I’m pretty rational, and the rational me knew he should go, but the truth still stung me: he really would have more fun without me. The tears would not stop coming. I felt like a horrible wife and companion; a good wife would just suck it up and go anyway, right? Not only that, we were about to have a whole week off together and now I was crying and ruining it!

I was judging myself in a way that my husband would never judge me,  He doesn’t measure everything I do in terms of whether I’m a good or bad wife, he just accepts me for who I am, not for what I can or can’t do.  Even after 35 years in this body, I can’t do what comes so easily for him.

One of the biggest challenges I’ve faced this year has been accepting myself for who I am, and remembering that I am not my illness and that my illness is not me.  It took me many years to realize that I had a habit of measuring my own self-worth by how much I could do, and could do well.  Even though I know now that it’s a fools errand, I still can’t help reverting to my old habits now and again, and feeling like less of a person when I am less capable.  It sounds absurd when I say it out loud, but it is the unfortunate truth.

Self-worth is something I struggle with periodically in my life, and I know I’m not the only one who has felt like they weren’t something enough. It gets so easy to focus on the things that we aren’t instead of remembering all the things we are.  I’ve stopped short of Stuart Smalley affirmations, but I have been trying to keep words in my mind throughout the day for when I’m feeling like like less-than myself.  Today I stole them from my tea tag:

What words help carry you through your day?

Three Things Thursday: Friday Edition!

I couldn’t focus enough last night to sit down and post, so here is the extra special, Friday morning edition of Three Things Thursday (all three things are from Thursday–using today would be cheating), followed by some other stuff:

1. I talked to my sister, who sounds wonderful and happy. So as not to compromise her privacy too much, I’ll just say this: We had some concerns about her health, they were dispelled this week and she is doing great!

2. I saw my husband’s face for the first time in a couple days, and we got to catch up and make dinner together (followed by scarfing it down before he had to leave again).

3. Work was super busy (this is not a new thing), but I felt like I made a lot of progress in several areas, and now I get to take a break! Even when you love your job, sometimes you just need to step away and enjoy the fruits of your labor for a little while.

Now I’m sitting in my bed, sun shining through the window, drinking my coffee, thinking about the fact that my day is completely clear and I can do anything I want, or nothing at all. I’ve been working a lot over the last couple years on not stressing about the things I should be doing, and instead trying to plan them during times that won’t cause me stress. Then if I don’t get them done on schedule I say “that’s ok, I can try again tomorrow,” and I move on.

It seems so simple, but for most of my life when I didn’t do what I thought I should do, I would get mad at myself for not doing it. And then the next time I didn’t do it, I would get even more mad at myself for not being able to just do the thing I was supposed to do. This would go on, over and over, until finally I was just paralyzed with my thoughts of how I was so terrible at doing the things I was supposed to do that I was a bad person. Short version: somehow not doing chores meant I was bad.

Seeing that written out seems silly, but I know I’m not the only person who judges themselves for not meeting the expectation (our own expectation, even!) of what they should be doing. But you know what? Life is too short to worry about whether or not the laundry is caught up before you go see your friends. It’s too short to not spend a sunny holiday morning writing and drinking coffee when the dishwasher needs reloading.

Right now I could be cleaning my house, but I’m right where I should be, making my life richer, and not punishing myself.

I’m not the biggest fan of fireworks (ok, I might actually hate them), so I’ll most likely be at home hiding in my bedroom with my cat tonight, but I do love what Independence Day stands for, so however you choose to celebrate, I wish you all a safe and happy holiday!

On Pills and Needles

Lately I’m going through a phase of feeling resentful of my medication regimen. Most days it’s easy for me to take my pills without really thinking about what the process means, but sometimes I look at my pills and think about how much it sucks that staying even moderately healthy means a consistent medication regimen that includes a plethora of pills and, on Saturday, an injection. This week is one of the latter.

Now, I’m not here to debate the benefits of a medicated vs a non-medicated existence. I love it that there are people who can manage their illnesses with diet and vitamins, but I am unfortunately not one of those people. Last year, before I spent four days in the hospital, I was doing all the things that one is supposed to do to stay healthy: I was exercising regularly, drinking the appropriate amount of water, eating fresh fruits and vegetables, and staying away from processed foods and refined sugars. It didn’t keep me from betting sick, and even though I’m gradually returning to what we all consider a healthy lifestyle, it’s unlikely that I’ll ever be completely medication free.

Trust me, the temptation to test it is there on a day that I’m feeling healthy and upbeat. I start going into a denial spiral, thinking that maybe I’m really not going to have to deal with this forever, but then I have a recurrence of symptoms and I’m smacked back to reality. Reality is day pills, night pills, and weekly injections.

My friends and I joke that I’m like an old lady, with my two pill sorters, but the truth is that neither of my grandmothers, nor my husband’s (she’s getting close to 90 and has heart troubles!) take as many pills as I do.

Yesterday was Saturday, aka Pill and Needle day. Every Saturday I bring my basket of pill bottles into the living room and fill up my pill sorters for the week. I set aside empty pill bottles for when I’m done so I can call in my refills to the pharmacy–the pharmacy that is one of the top five most recently contacted phone numbers in my phone.

Lest you think I’m exaggerating, here are my pill sorters:


Exactly one pill in these sorters is a high dose vitamin D supplement–this is the only supplement I put in the sorters. (EDIT: oops, I misspoke! One pill in each day is a folic acid supplement!). Thankfully my iron levels have been stable so I have eliminated those for now an any other supplements are added to my smoothie in the morning (when I get up in time to make it, that is).

Then there is this:


That’s right, it says cytotoxic, as in kills cells.

Any fans of the show “House, M.D. ” will recognize the drug Methotrexate, as it was mentioned in practically every episode for the first several seasons. This is the medication I take to keep my arthritis flares at bay, and I take the maximum amount allowed for my condition–though very large doses are used as a chemotherapy drug, what I take is the non-chemo maximum dose. One of the biggest potential issues for methotrexate is liver problems, so liver function is carefully monitored through regular bloodwork.

Though I’ve been on methotrexate for about six months, I’ve only been injecting it for the last two, and even though I was nervous about it at first, I’m really glad I switched. The side effects aren’t as bad as they were with the pill form, and I seem to be deriving more benefit from it. This is what I try to focus on when I’m having my own personal pity party: I never want to go back to where I was six months ago. If I have the option of making my life even a little less painful, that’s my choice, and I’m ok with it–even if I don’t always like the idea of it, the outcome is worth it.

Three Things Thursday!

I’ll be honest with you: I was grumpy today. My anxiety was high, my fuse was short, and I’ve had inexplicably bad sleep all week. Inexplicable except for the day the crows were going nuts, that is. But, I pulled it together for Three Things Thursday, so here we go!

1. My motivation to play music is coming back.

I’ve been struggling with it for quite awhile now–not enjoying my voice lessons as much and feeling like the music just wasn’t inside me anymore. After I pushed through the discomfort of performing two solo songs at my voice recital last weekend, I started to remember why I love singing, and this week I have been finding myself singing more often. Thursday is my usual voice lesson, and today I went in with a renewed enthusiasm for training my voice and for learning the piano.

2. It’s cherry season!

Not only is it cherry season, but they are exceptionally good this year AND I can eat them again. Last fall, after I got sick, I had to limit my intake of fruits and vegetables, and the ones I could eat had to be cooked very, very well. (I know it sounds fake, but trust me, it’s a thing). Only recently have I been able to eat fruit again, and I am super happy that it’s happened in time for cherries.

3. Random animal sightings.

Seeing animals in odd places, or at times when I don’t expect to is one of my very favorite things, and it’s a fairly recent quirk I have acquired. Today I had two of those sightings, so it seems like a bonus day! First, I had to stop on my way home from my voice lesson so that a peacock could cross the road. A peacock! A real live peacock, crossing a busy road, in traffic.

Then, in my neighborhood, I got to see The Dog, too.

The Dog is a dog who hangs out on what must be some kind of table, in the window of his house, which is set back a bit from the street. I’m not sure why it makes me so happy to see The Dog, but it always does. Sometimes I won’t see him for days, and then I’ll see him twice in one day, which makes me even happier. “Honey!” I’ll say to my husband. “I saw The Dog today! TWICE!” You would think the novelty would wear off, but it just doesn’t. I love seeing The Dog.

Does anyone else share my love of animal sightings? What are your three things today?

Three Things Thursday

Tonight while I was in the shower I found myself surprised to be thinking about the highlights of my day. I’ve been really tired this week (anyone else having bad dreams?) and feeling like I’m fighting two different kinds of flares at the same time, but there were some really great things about today, too.

So today I’m introducing my very first theme post that I hope to make a regular addition to My Twisty Tale: Three Things Thursday! A quick google search tells me that I’m not the only one who enjoys the alliterative Thursday theme, but I’m certainly hoping to make my own mark on it. I know that a blog with an underlying theme of chronic illness can get a little heavy, so every Thursday I’ll tell you three things that were positive about my day even if it was the worst day ever (cue Tina Fey eyeroll).

So here we go:

1. This beauty, given to me by a coworker. It was so unexpected–it really was a very pleasant and thoughtful surprise!


2. This guy, who–despite the insistence of pretty much every cat expert out there that it can’t be true–truly loves belly rubs.


3. I came home to a clean kitchen and bathroom courtesy of THE BEST HUSBAND EVER. (But don’t tell him I told you!)

Bonus thing: today is my Grandma’s birthday. She may be older today, but she never ages a bit– that lady has more energy than I do most days! I don’t get to see her very often, but she is never far from my thoughts and I love her to pieces. I doubt she will read this, but just in case: Happy Birthday, Granny!

What are your three things today?

Advance and Retreat

After the excitement that came with my initial blog posting subsided, I wasn’t quite sure where to go next. So many ideas had been accumulating for months (and maybe even years) that it was hard to focus on one thing and take the next step. In the days that followed that first post I created a new Facebook page for My Twisty Tale, a new Twitter account,and got a shiny new email address. All that enthusiasm was bound to turn into something great, right?

Not exactly.

The response to “Goodbye, shoes. Hello, blog!” was much bigger than I had expected, and the response was so positive and encouraging that for the first time I realized that people actually want to hear what I have to say. I was overwhelmed and grateful, to say the least. But I was also the tiniest bit anxious. Now that people were actually listening to me, I started worrying about whether or not I had anything to say.

Now, most of you reading at the time I’m posting this know me in person, but for those of you who don’t I’ll just come out and say it: I have an anxiety issue. It has plagued me about as far back as I can remember, and sometimes it is worse than others, sometimes it coincides with depression, and sometimes it seems to come from out of nowhere. No matter how it comes on or how long it stays, it generally involves worrying that is disproportionate to the situation at hand. That is where I’ve been for the last couple weeks.

As each day passed and my Facebook and Twitter feeds sat empty and I had yet to post a second time, I began to get more and more anxious. What if I really did only have one post worth of something interesting to say? What if people were just being nice when they were encouraging me? Did people really want to know about the not-so-nice parts of the story? I had almost psyched myself out of the whole damn thing when I remembered one of the main reasons I started this new part of my journey: to participate.

For a good portion of my adult life I’ve been an inconsistent participant in many of my personal relationships, including my relationship with myself (which is definitely enough for its own blog post at a future date). Most recently I have been sidelined by my autoimmune conditions, but I’m certainly not a stranger to being an observer instead of a participant and it has caused me a lot of sadness, guilt, and loneliness. For many years I felt like I was waging an uphill battle–each time I felt like the worst was behind me, some other bizarre physical condition would pop up, or my mental health would take a dive. I began to stop making plans with friends because I didn’t want to have to cancel if I wasn’t feeling well, and I was self-conscious about being with people if I was feeling sick or in pain or anxious or depressed. Little by little I was starting to feel like one big walking illness.

So I retreated.

Time and time again, I retreated. I watched my friends from afar, trading a few emails and texts, watching their kids grow up on Facebook. I read countless stories and message boards, searching for people that had made it through any of the things I had been through. I watched and read and related, but I very rarely joined the conversation.

My long term friends have been so accommodating of my tendency to retreat that I am always surprised and relieved that they still allow me to come back in to their lives. I have felt unworthy of their continued support and friendship and I’ve often thought about how frustrating it would be to be my friend–that I’m much more trouble than it’s worth. These same friends have let me back into their lives after long absences with open arms and warm smiles saying “I knew you would come back when you were ready, you always do.”

My impulse was (as it often is) to wait to post again until I was having a good day–a day where I felt calm and healthy and upbeat– but that wouldn’t be very authentic. Much of my health these days is managed with medications, but I’m at peace with it because at least I know what it feels like to be a person again instead of just a series of symptoms and illness. Even on a day that my pain levels are up, as long as I am capable of getting out of bed it’s a not-so-bad day. My ability to participate hasn’t always in been my control, but in this moment it is and it’s an opportunity I don’t intend to squander.

I’m here, and I’m ready to participate.

Goodbye, shoes. Hello, blog!

I’ve always had a thing about shoes.

As a child they had to fit just right, not pinch or poke anywhere. They had to be the right color, right fit, and be buckled or tied perfectly. My socks had to be adjusted so as not to bunch up inside the shoe– the seams arranged just so. Confession: I didn’t get any less picky as I got older–I will still throw out a pair of socks if they so much as slip under my foot, and I will rearrange a buckle or tie as many times as it takes to be exactly right. You could say I’m a shoe perfectionist.

Over the years I’ve cultivated a collection of shoes that speak to me in some way. Some are fun, some are colorful. Some sexy, some demure. Some whimsical, some strictly business. For me, shoes have always been more than just a practical need–they’re a fun form of self expression and the only thing I’ve ever really collected. Each pair of shoes I own has been carefully chosen for a specific attribute: shape or height of heel, bold color, uniquely shaped toe box, hint of embroidered detailing, or even the way they sound clack-clacking on a hardwood floor. I’ve chosen shoes to stand out in a crowd or shoes that help me melt into the background. My shoes and I have had a great journey, so for the last few years I’ve been dreading this day: The Day I Say Goodbye To My Shoes.

But I’m getting ahead of myself.

First of all, thank you for being here, and for being interested in what I have to say. This isn’t my first foray into blogging, but the last time I tried I struggled with finding my voice and my purpose. I posted a few times, felt awkward and insecure, then gave up. It turns out that I was as picky about my writing as I am about my shoes. I worried about putting myself out there and worried that no one would want to hear what I had to say. I wasn’t sure it was worth sharing; was I really that interesting?

That seems like ages ago. That was when autoimmune disorders were something I had read about but never seen firsthand. It was before I spent hours and hours searching the internet for people who shared even one tiny piece of what I was experiencing. People who, like me, were in pain and struggling to make sense of what was happening in their bodies. People feeling isolated and frustrated and searching for hope. Every new symptom I had, every medication I tried or considered trying, every diagnosis, side effect or procedure: I took to the internet to find comfort and a sense of normalcy from the brave souls who cared enough to share their experiences with the world.

My story is too long to tell in one post, but now that I’m feeling well enough to share it I hope I can provide comfort to even one person who needs support. And since I have multiple autoimmune disorders and health conditions, I should be able to relate to at least a handful of you!

Now back to the shoes. Or, more accurately, my feet.

It’s the left foot, mostly, that doesn’t look or feel like it used to. It’s not particularly painful at the moment, but it has certainly gone through some odd changes that make it challenging to wear many of my friendly old shoes. The pinky toe is starting to twist toward the bottom of my foot and my other toes don’t like to straighten out anymore. My big toe no longer joins my foot in a clean, graceful manner, preferring instead to poke out at the base in a red bump. I have inflammatory arthritis that affects many of my joints, but most of the changes you can see from the outside are in my left hand and foot.

I’ve spent a fair amount of time over the last few years hoping that my feet would one day return to the pain-free, symmetrical state they once enjoyed while my beautiful shoes have languished in the closet or on the back of the door waiting to be returned to the rotation of shoes that actually leave the house. Part of me knew better, but I just couldn’t (or wouldn’t) let go of the feeling that giving up those shoes was giving up part of my identity–that I would be less me. I hated my body and my foot and I didn’t want to believe that I had no choice in the matter. My body wasn’t mine to control, but I tried anyway, and I held onto those shoes for dear life waiting for the day that I could enjoy them again.

That day has not come, and yet I’m finding myself ready to move forward. I’m learning to accept my new feet and I’m finished mourning the feet they used to be. So goodbye, leopard print Enzo’s that have always pinched but were so luxurious I bought them anyway. Farewell, first pair of Fluevogs with the lime green detail. Adios, brown cowboy boots with turquoise inlay that I got for a killer bargain. Au revoir, pretty peep-toe slingbacks. I’ll miss you and your friends, but thanks for the memories. Now I’m going to go save up for the prettiest comfort shoes I can find (I’m looking at you, ) and practice my at-home pedicure technique.