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Learning and trying to be kind and living my life as fully as I can stand it.

Monday, January 8, 2018

New Year

The day before New Year's Eve, December 30, 2017, I fell deep into a hole. I couldn't stop crying. Crying hasn't been a big part of my life over the past decade or so--I unlearned the habit after years in my youth when any intense emotion would have me bursting into tears. Now the tears are coming back and it still makes me deeply uncomfortable, even as it feels like a relief.

It wasn't a physical hole--it was the emotional hole I'd been circling for months, afraid to get too close exactly because I didn't want to fall in. Even though I knew I needed to fall in. Knew I couldn't avoid it. Knew it would be in my path no matter which route I tried to take.

I felt desperate. With loneliness. With fear. With mental illness. With self-loathing. Just this deep sense of being so goddamn tired of being this person that I still am. The person who thinks too much about everything and can't relax and beats myself up and can't appreciate what I have. The pain was so intense. The fear was so intense. The fear that I would never get out of this sad place, this longing place, this feeling broken place. And even though some far corner of my mind knew that this would only be temporary, that I'd been here before and I would pass through it somehow, I felt trapped in myself and all I wanted to do was get away. Numb. Run. Hide.

There have been things going on in my life, difficult things, that I don't want to write about here. That's one of the reasons it has been hard to show up on this page, hard to find a way to share myself when so much of what I've been doing and thinking about and working on has not been for public consumption. 2017 was a hard and painful year for so many of us, for so many reasons. Me too.

I am working really hard, even as some of that hard work is in learning how to be softer. Softer on myself. More forgiving. More loving of this wild, imperfect woman that I am blessed and sometimes cursed to be. I am getting help from many wise people. I am surrounded by love. I am known. And I know for certain that I am on the right track just as I know for certain that the part of the track I've been travelling has been and will continue to be devastating. There is all this inner work going on and I still have four little kids who need to be loved and driven to school and taken to the doctor. There are still friendships, old and new. There are still people hurting and struggling and working all around me.

In the few weeks leading up to New Year's Eve I kept asking myself how I wanted to celebrate. Ceremony is important to me and it's always mattered to me to mark the passing from one year into the next. It's always been a funny day, often not living up to the hype, easy to end up somewhere you don't really want to be especially if, like me, you're someone who hasn't given much thought to where I truly want to be. I wondered whether I wanted to ring in the new year with my littles or whether it was a better year to go into the city and party, dance all night and let my body feel young and free and fun. I thought about hosting a party but that felt hard. I thought about going to spend the night on a beach somewhere with my journal, to be quiet with myself but that sounded way too hard and scary. The day got closer and no plans were made.

On the 30th I felt achy and drained. I felt sad. The tears started pouring out, my mind got desperate, I went into hermit mode and didn't want to talk to anyone or see anyone. I knew I needed to reach out to someone and I didn't want to. At all. I did not want to pick up the 10,000 pound phone.

I texted with my brother and sister to say "I'm struggling. I am so sad. I don't want to talk but I want you to know." They loved me from afar and told me they were there to talk when I was ready. They tried to reassure me.

I texted my sponsor and said "I'm struggling. I am so sad. I don't want to talk but it feels so hard to even reach out to you to say this much that I knew I needed to do it." She said she was sorry I was struggling, she sent me some slogans and suggested I pick one to focus on. That helped a little.

I cried. I tried to get out of my head. I thought of different ways I could escape myself and chose not to take any of them.

I texted my wise friend Liz and said "Oh friend. I'm in the dark and I feel afraid here. How do I not fight it?"

Liz is writing a book about the Divine Feminine and the Goddess traditions. She is a fierce feminist, a yogi, a mama, a soul sister. She is one of my teachers in this life. She has written before about how we can all be so afraid of the dark but that the darkness is a necessary part of us. Diving Into Darkness

She wrote me "Breathe. You were born in the dark, love. You ARE the dark. She's waiting for you there. Ask Her for help. She will hold you."

Then she wrote "Get your feet on the ground. Bare feet on the dirt. Let the sun hit your face. Breathe. You've got this."

Ok, I wrote. Feet in the dirt. Thank you. And I took myself outside into the backyard and did what she said.

Then she wrote "Lay in the dirt if you need to. Feel Her holding you. You are not alone. Never have been, never will be."

So I lay in the grass and dirt of my backyard and I wept. I closed my eyes and I begged "Help me. I need help. This year is ending, a new one is beginning. I don't know where I'm going. I'm so afraid."

The acuity of the desperation passed shortly after that. I got back in bed and hid there, wrapped in blankets. Kid bedtime happened and I got back in bed. Not long after that I started shaking, my whole body shivering without cease, for thirty minutes. Rigors.

Oh! I thought. There is something really wrong with me. Physiologically wrong with me. And even though I felt shitty, I felt such great relief. Because I know what to do when something needs to be healed in my body. But I get so afraid when I lose control of my mind.

I celebrated New Year's Eve in a hospital bed, alone, after an ambulance ride into the city to take me to my special hospital where they know me and know how to take care of me. I had pylonephritis, a kidney infection. It wasn't a party and it wasn't at all what I pictured when I tried to imagine how to mark the passage of another year but it felt deeply right. That was where I needed to be and it fit as an end to 2017--a year of learning to focus anew on my physical health.

After Liz told me I wasn't alone I wrote her back to say "That helped. I do feel so alone. And so tired of myself and this journey of learning that is so hard."

"You're ready, friend," Liz wrote to me. "You're on the cusp of huge change."
'I imagine it hurts like hell. But you can do it."

We can do it. Happy New Year. I wish you all more of the power of the Divine Feminine in your lives. I wish you good, true friends and helpers when you ask for them. I wish you care for your minds, bodies and spirits. And I wish you tenderness as you journey to wherever it is you need to go.

Friday, December 1, 2017

Breakdowns and breakthroughs.

The house is absolutely trashed despite the fact that it was professionally cleaned three days ago. Utterly trashed. Now, I am not a neat person and my level of acceptably messy is far higher than most people I know. But I like to be in a clean house and I feel how much calmer my body feels when I walk in the front door and admire the sweet restfulness of a shining, tidy house. The slam of unease that comes as it gets immediately undone, as though I just hired professional uncleaners to come in and tear everything apart is intense. Almost so intense that I'm tempted to not have it professionally cleaned so the fall is not as severe.

I completely lost my shit with my kids yesterday. We don't have a lot of rules in our house, mostly because it has to be something that really matters to me to make me willing to have to address it one million kazillion bajillion times every day until I die. I mean, until their brains develop enough for them to remember the rules and to remember to follow them. One of the rules is that they are not allowed to play with food. This is partly because table manners are really important to me and partly because it makes me actually physically sick to see food disrespected and wasted as though it doesn't matter. Last night they were hyper and having fun and couldn't settle down and I asked them and then told them over and over again to stop playing at and to eat their food and then I fucking lost my mind and slammed my hands down on the table and yelled STOP IT! I made Daphne cry. They all stopped and stared at me. And then it all started up again. Eventually I started crying because I felt so powerless, so overwhelmed, so over it and so trapped.

I knew I was feeling out of control way before that. It came over me at 11 am as the result of a money conversation with its subsequent worry and fear. Coupled with the experience of feeling unseen, unvalued. Those are triggers for me that I am now wise enough to recognize. I knew I needed help but I didn't ask for it because. . . I didn't know who to ask and I didn't know what to ask for and because I thought that, though not ideal, recognizing how I was feeling would be enough for me to manage my way out of it. Nope.

Yelling at my kids makes me feel bad for many reasons. I don't like to scare them and I don't like the feeling of being out of control. There is some shame but I have to say there is less than there used to be. Because my anger and tears and yelling are true. And I would rather my kids see me lose it sometimes than for them to get used to me shutting down and turning myself off which is how I have handled my anger for most of my life. Still, as a wise advisor helped me see last week when we talked, that is not how I want to be parenting and the questions to ask myself are how I got there and what I needed to do to take care of myself to help me before I get that far gone.

It became so clear to me yesterday that I need help. I am working really hard in a lot of ways right now and I am out of gas. Flayed. Turned inside out. But whom do I ask? What do I ask for? These are things I don't know. Not because there is a shortage of people asking how they can help me but because it feels so hard to figure out not just what I need but how and whom to ask. This is why we need caves. Communal caves where I can be surrounded by people who can step in and take over when I need to be out.

The work I am doing right now is personal and it is deep and it is not financially remunerated. I feel really lucky to have the time and space to do this work and oh holy shit is it hard. It is recovery work. Healing work. Self-discovery work. It was begun some years ago and made necessary by the introduction of these four small people into my life and it is made harder by the presence of these four small people in my life. Every day this week I have been awakened by a screaming child. To be thrust into consciousness that way and then immediately carried by the waves of demands has been almost unbearable. Waves of panic and a desire to escape wash over me as my fight or flight systems roar to life. It's hard to shut them off.

I have always known I wanted to be a mother, as I've written here before. I was able to articulate as I got older that it wasn't just because I wanted to be a part of introducing new people to life but because I wanted to see myself, to know myself, as the changed version of myself I knew I would become through the experience of mothering. And yep! That has been the case. In a nutshell what I've been introduced to is that all the ways I'm managed my way through life so far no longer work. And I no longer want to live like that--numbed, pushed to the max, in survival mode. I want to be in this precious body of mine, tuned in to the sweetness and even to the pain. I want to be all the way alive. To love myself as much as other people love me. To not be so hard on myself. I want all of this. I want this because I want the same thing for my kids and I want this because what used to work for me is no longer sustainable.

I'm on the path. I have a lot of support although I need to figure out how to have more. My kids are thriving. This too shall pass. And now I'm going to go eat a donut and clean my house.

Monday, November 13, 2017

A Hodge Podge

Four months with no posts here. I think about writing every day but my head is such a morass of negative thoughts and self-doubt that nothing makes it onto the screen. There are private life things that deeply affect me that I won't write about here so that's confusing. And despite June being the most enjoyable and sweet month of my parenting career, since then I've fallen more into the category of "The things I think about parenting are not things I want to record on the internet for my children to someday read" I feel scared to write things like that.

I have never gone back to read any of the things I've written here. I have a new, deep self-consciousness about writing about my life that I can't seem to get over. The reasons for that are:

-It feels navel gazing if I'm not writing something that addresses the real, serious, painful shit going on in the world. The racism and the sexism, specifically. I want to write more about those things but thus far my writing has just flown out of me, unedited, because I was just talking about myself. It feels worthy of more attention to write about the other stuff and it makes me feel more scared.  Learning about white privilege and white fragility, seeing the depth of the racism in this country, and paying attention to these things is confusing. My first thought is to share the confusion, the observations, the questions, but I keep coming back to a place of being a student and not being ready to try to write about it. In a similar but different vein, the campaign season and election of 2016 punched me in the face with the sexism in this country that I'd done a good job of convincing myself did not really affect me in meaningful ways before that. Mixed in with that the personal discovery work I have been doing for the past several years has brought me right into my femininity in ways that are raw and real and good. There is so much going on!

-I'm in major transition in many ways which has resulted in some periods of deep depression. When I'm down like that I go into hiding. I don't even want to talk to my friends or family about what's going on. Again, the idea of trying to share or explain what I'm thinking or feeling when I feel unmotivated, lazy, sad, and lame is too intense. In the past when I have shared painful or worrisome emotions people who know me in real life have gotten scared and reached out to check in. Which I often do not want to happen. I want this place to be a place where I make art, not the place where people find out how I'm doing. Maybe that is not possible. But the onus lies on me to be clear about my own boundaries so I can expect, nay welcome, comments and thoughts in response to what I write. I'm trying to figure it out. The good news is that I currently am not depressed so no need to worry about me on this account.

-I'm ready to change the tone of this blog from the totally raw, diary-like style it has been into something else. But I don't know what or how yet.

There are other reasons but those three capture the sum of all the parts.

I am a writer. I want to own that because I love being able to write. I want to do it more and more, but that is also the kind of want that sometimes exist more in theory than in practice. The actual practice of writing is way harder. I've tried to trust that I would find my way back here when I could. Today is the day because a woman named Stephanie who I don't know told my sister-in-law Lauren that she missed my blog. I so appreciated knowing that my writing had found its way all the way to DC that  I decided I'd muddle through a post today to try to get back in action. Thanks Stephanie!

Wednesday, July 5, 2017

Baby days

One of my college friends just had her first baby at age 40. We are the kind of friends who aren't close/close but we love and respect one another and have laughed a lot together over the years. I don't know her journey to motherhood; I tell myself I can guess at some of the details. And I'm pretty sure she's someone who has wanted to have children for a long time, as opposed to being someone who wasn't sure or was pretty sure she didn't until she finally did.

Her baby girl was born a couple weeks ago and I've been thinking of her so much--been thinking of her so much for the past several months as her pregnancy progressed across the country from me. I rarely reached out. It's hard to find the words to say "I feel my own pregnancy when I think of you. I feel how hard it was, how surprising, how long and short, how uncomfortable, how special, how unlike anything else."

Hard to find the words to say "Oh my god my life is so changed since these babies came. Blown to bits and reconstructed. Devastating to who I was. A more expansive understanding of who I am and who I want to be."

Words cease to matter because you know that she can't hear them until she's crossed over. And yet she wants to hear them, sometimes, maybe, depending on the day and who they're coming from. Or maybe never.

Now this little, tiny baby girl is outside her body, a member of the population on this Earth, a future woman. And I think about my friend, wondering how she's doing. Finding it hard to really ask the question to show that I really want to know.

It occurred to me tonight that one of the reasons it's so lonely to be a new mother is that many other mothers might be avoiding saying the wrong thing, not wanting to jinx you or scare you or take you to a place you haven't gotten to or might not ever get to. I don't want to say "Wow I'm really thinking about you. That time was so exhausting and confusing and ego-smashing and hormonal." if she's nowhere near there. Yuck. Get that sad, scary shit away from me!

But what if that is where she is and she doesn't hear from anyone else that we were there too? That I felt like a failure so often. That my husband had to tell me to put Lily down and go for a walk outside because the rage in me directed at my screaming baby girl who only wanted me but wouldn't stop crying was going to damage.

It's so confusing to be given these tiny people to take home when none of us know what we're doing. So confusing to realize our own parents had no idea what they were doing.

Sunday, July 2, 2017

25 more things about me

Back in the archives of late 2015 I wrote one of this lists. I was also on a lot of prednisone then. I don't remember what was on that list and I'm not going back to check. Maybe there will be repeats? Let's see.

1) My outsides very often do not match my insides. This means that if I look calm and graceful and unworried that doesn't mean I feel that way. I thought everyone was like this and I think to some extent that's true. More and more I'm realizing this is majorly true for me. I will probably write more about it sometime. If you're wondering how to integrate this information in your actual real-life relationship with me you can ask me "But how are you really doing?" It's possible that I won't have even asked myself that question until you ask me.

2) I have major money anxiety. Some of this comes from my major math anxiety in which I feel like I barely know how to add. (I do but not easily).

3) It's very rare for me to look people in the eye. I almost never do it. If you have noticed this about me know that it's not personal to you.

4) I have lost not one but both pairs of my glasses in the last week. My prescription sunglasses are only misplaced I think/hope. I had them two days ago. My real glasses are nowhere to be found. They may be in a random bag or under a couch or in a toy box. Or I may have thrown them in the garbage by mistake. The new ones will be arriving in the mail soon and every day I anxiously check because I look forward to being able to see clearly again.

5) I take a lot of things personally. I'm slowly learning that most of these things are not personal at all.

6) For most of my life I have really, really, really cared about what others think of me. Way too much.

7) I am charming, graceful, socially adept and flirtatious. (I guess this is four things but I'm putting them together). Some of these are learned behaviors and some of them are in my blood, innate, inherited from my family.

8) I am extremely curious.

9) I believe strongly in the need for solid, quality public education in our country. This is a social justice issue and a success plan for our country and it's necessary to take care of our children who need all of us grown-ups to take care of them.

10) I am pretty sure I now believe in the need for single-payer health insurance. I do not truly understand how it would work and how it would change people's daily lives. Healthcare is a human right, it is also part of our country's success plan and it pisses me off that people don't believe that everyone deserves to get taken good care of.

11) Dismantling racism (in myself and systemically) and sexism are the most important issues for me. I am paying a lot of attention to how these show up day-to-day (and I know I'm still missing a lot).

12) I do not enjoy doing things that I am not good at. This has been a life-long thing.. I lose patience with myself quickly and decide "Nope! Not for me". I think this will ease up with time now though.

13) I hate being made fun of, even as a joke. I do not have a good sense of humor about myself.

14) Swimming makes me anxious. I can do it but I don't love it.

15) I like my toast well done but not burnt.

16) I find music distracting but I love when the right song comes on and touches me unexpectedly and necessarily.

17) I played the piano when I was 5, the flute in 4th and 5th grade and the cello from 6th through 8th grade. I never really learned to read music. I mean, I knew what note went to what finger arrangement but if you told me "That B was flat" I would not have been able to hear it and would not know how to fix it"

18) I would love to be able to sing, really belt it out, and hit the notes while not hurting my throat.

19) I am mesmerized by my children these days. The things they say, the things they do, what they look like. I love hanging out with them.

20) I love the beach. Cold days or warm days.

21) Being near water and listening to it soothes me. I don't necessarily want to be in the water, though sometimes I do for a bit.

22) I am very aware of other peoples' emotions. I used to think this meant I knew how they were feeling and what they needed. Now I see that I am tuned in when people feel uncomfortable or needy but I don't necessarily know what specifically is making them uncomfortable or what they need. I'm also slowly learning that it's not my job to fix it for them.

23) When I close my eyes and picture my true self, I see my 9-year-old self. Seeing her and focusing on her makes me cry almost every time. I want to hold her in my arms, look her in the eye and tell her  "I'm sorry I forget about you sometimes. I am here now. I will take care of you. You are safe and loved. Just keep being you." My 9-year-old self wears a very stripey sweater.

24) I often over-promise and under-deliver. This will be changing.

25) I love and am loved by a truly astonishing group of bad ass, powerful, amazing, open-hearted, skilled, funny, challenging, flawed, remarkable women. I want to introduce you to all of them and want to write about them here and I'm scared to try because I don't want to leave anyone out or hurt peoples' feelings by what I say or don't say. I also don't know if they want to be written about. This will remain a pending item as I ponder it. The writing about them, not the knowing them, loving them and being loved by them.

I'm pretty sure there are no repeats on this list.

Friday, June 30, 2017

On the pred

4 am and the Prednisone has me up again. Mostly because I'm so hungry I could eat a wheel of Cowgirl Creamery triple creme cheese with bread or half a fruit and custard tart and those are just examples except no that's pretty much what I've eaten yesterday and today. In addition to a lot of incredible homemade Indian food a friend made for me and handfuls of cashews and pistachios and a chef salad and protein shakes and protein bars and not a lot of vegetables I see, partly because going grocery shopping has been beyond my abilities and partly because sometimes vegetables are beyond me. I have been drinking Arbonne Greens Balance to make up for that.

I like what I write here to be relatable and when I go into medical stuff it's probably not too relatable for most. I've spent the last almost 30 years of my life denying or trying to deny how much my medical conditions affect my daily life, how they don't make me different. But no. That's wrong.
Different than whom? Who knows. The normal. The measurement, made up in our own minds that represents what we all should be, based on comparing our insides to other peoples' outsides and coming up with something that isn't real.

Prednisone. I'm flying high on it again. Not for the first time and probably not for the last, I have this super power surging through my body and my mind like a blow torch. It's intense. I feel like I could do anything, solve any problem. I see connections in my mind's eye, between people or ideas or situations. It takes everything to the nth degree. Makes it hard to sleep. Makes me want to write buckets about twelve different ideas at a time except it's even harder than usual to get butt in seat and ask the words to come out. It feels like anxiety. Jitters. Being on speed, though I've never been on speed. I have to take my own hand and lead myself to a quiet spot to say, shhhh. Rest. This is not real. Your body needs a nap, a break, glasses of cool water. Try to go back to sleep.

The other confusing thing about the pred is that for the most part it feels like how I should feel. Like how normal people feel, if there are normal people. I have energy. I can do things like clean the kitchen without sapping all other available energy reserves. I am a better parent. I have good ideas and follow-through. So then I have a hard time trusting what is real. How I'm supposed to feel. What is my baseline?

I've been very open with the people in my life that I'm taking a lot of steroids right now, mostly because it is so front and center in how I feel. I became aware that I'm talking faster than usual or zipping around the room, or that I've said something with greater intensity than necessary (although that may just be my style) I'm roided out. That's what's happening. So I tell people, give them a warning or an explanation. Like calling Stephanie yesterday and telling her "I have five or six different things to talk to you about that are of varying degrees of importance and some are intense. We don't need to talk now but I want you to know they're on my mind." Phew.

A few people have said to me "You make it sound kinda good!" and I get that. I mean, it is kinda good. I feel super. Literally. I feel positive about things, I'm getting a lot done, I'm writing. I've held some yoga poses that I usually can't do. The clarity is my favorite part. That's the part I want to keep forever, even though I know I can't. It will go away too.

Here is a funny, weird, sad story. When I turned 40 this past March I went out to dinner with my family of origin--my mom, dad, sister and brother. This was a rare thing--the last time we did it was several years ago right before my brother went to Ghana for the Peace Corps. My parents are divorced and though they're far beyond civil with one another and we are regularly together for larger family events with the grand kids, we haven't been a five-person unit for decades. But when I hit this milestone birthday and thought about what my heart truly wanted, what it wanted was to sit around a table and share food with the people who made me. We had a wonderful dinner, complete with funny and frustrating patterns that have been in place since Martha, Ira and I were kids. We had deep discussions, which is one of the things we love to do.

At one point I mentioned that I'd thrown the last of my Prednisone away, flushed it down the toilet actually. I know, that's bad. And that's part of the point. The four of them were equally aghast when I said that. "No! You can't do that! That's terrible! So bad for the water and the fish and. . . "

I was embarrassed but got over it. And I promise I won't flush meds again. I wasn't thinking about the water when I did it, I was thinking I didn't want my kids to find the pill bottle and somehow get into it and take the remaining ten pills. It was note-worthy to me that I'd finally gotten to toss them because I'd been taking from a lot to a little of the steroid daily for four years for my colitis. The last time I was on a ton was after being hospitalized in September 2015 (you can scroll back and find that I was writing a lot at that time too). I finally weaned off sometime in 2016 but I held on to the bottle, just in case. Just in case I flared and I need immediate relief. Just in case. So it felt good, even a bit momentous, to toss it.

A couple days after our dinner I realized something. My family was truly horrified that I'd put those pills into the sewer system, into the waters of the world. But my own body is just full of this stuff. So many meds. Handfuls for years. Taken without much thought, without much noticeable side effect. It made me feel kinda sad.

This essay is rough but I"m posting it anyway. It makes me feel twitchy to write too much about health stuff so this will be the last of it for a while. Going to try to go back to sleep for another hour or two.

Thursday, June 29, 2017

Medically fragile

"I worry about you, because you're medically fragile," my friend said to me three weeks ago.

And for some reason, after more than thirty years of qualifying for this designation, I heard it. It might be too strongly put to say that I embraced it but not by much. I took it in and allowed it to become part of my identity, even though the choice was really only to recognize it since it was definitely already there.

I am medically fragile. My body, in all its strong, wonderful, amazing glory, is more fragile than most. Oh.

For years people have told me that I'm hard on myself and I've hated to hear it. It was one of the most common observations made to me and I shrugged it off with exasperation each time.

For years people have told me that I'm strong. They look at me in wonder, in admiration, when they hear about the transplant, about the twins. They wonder if they could do it and I say "Well, what choice do I have?" and move on.

Those attributes come from the same place--the sheer force of my will that I will exert to make the world, my life, be what I need it to be. Except that's not how it works in my body. I've just been ignoring it, I haven't been changing it. I can't change it.

Nikole is a doctor. A surgeon. She is also the Chief Medical Officer at the organ procurement organization where I work. She is my friend and my colleague and we were pregnant with twins in neighboring offices at the same time--people joked that they didn't want to come to that side of the office for fear it was catching. We talk about all sorts of things--systems at work, marriage, food, boxing, life. We share meals, with or without our children in the background. Her wife Annie is also a doctor and also my friend. She opens her arms to me with a smile every time she sees me and the two of them make me feel so loved, so accepted, so taken care of, so valued. My gratitude is huge.

Why could I hear her when she named me? I don't know. She's certainly not the first person to say she worries about me, about my health. She's not even the first doctor friend to say so. But somehow because of who she is to me and how she said it and who she is in the world and also probably because she wasn't saying "And you must do this about it!" the words worked their way in and settled into my knowing of myself.

Medically fragile.

On June 11th Nikole and Annie hosted a birthday party for our four kids at their house. It was a team effort (I showed up, that was my role on the team) and it was completely wonderful and over-the-top. The night before the kids spent the night at Stephanie's and she and her family got them dressed up in new outfits, hair done, before taking them to the party.

I woke up and limped around the house because for some reason my left ankle and my right shoulder were aching. Quite a bit, actually. It felt like the day after a soccer tournament when the muscle aches and bruises coalesce and remind you of all the little body parts inside you that make motion possible. I'd taken my regular yoga class three nights before so maybe that was it? I took a bath with Epsom salts, drank some apple cider vinegar and a turmeric-almond milk latte to introduce inflammation my friend Maria had told me about. I lay on the couch reading and resting. I knew the best thing for me would be to miss the party and I also knew there was no way I was going to do that. I took some heavy-duty Ibuprofen and off I went.

The pain slowly increased as the day went on--I couldn't really lift anything or even raise my arms above my head. My knees were stiff. I slowly walked around, thinking and hoping that movement would loosen up my joints. I did a lot of sitting. It was a sweet, lovely day full of friends and happy kids and four of the most incredible birthday cakes I've ever seen.

Later that night after putting the kids to bed I laid down and took stock again. Everything was the same, my body still hurt a lot. And now my jaw hurt on the right side, to the point where I could only partially open my mouth. I got really scared.

"My jaw hurts now, " I texted Nikole. "Do I have meningitis?"

"No, but you need to see a doctor tomorrow," she wrote back.


Fast forward to the next morning and the series of phone calls and texts that I sent out to my care team, including my hepatologist Jennifer who is the main driver of the bus when it comes to my body these days and Bob the surgeon who transplanted me sixteen years ago who watches over me like a super-powerful guardian angel boss man.

Something is wrong. I don't know what. I feel terrible. What should I do and where should I go?

I recounted what had been going on with me lately, medically and personally. Jennifer took charge, trying to put the pieces together. A lab draw was the first step, to get the lay of the land. Everything in me told me that I needed to be in the hospital, based on fear and pain level and past experience. So even though she didn't say that, Stephanie drove me into San Francisco during rush hour traffic so I could start the process at CPMC, my safe place. My transplant center. The hub. She dropped me off and my sister took the baton, sitting with me in the same lab waiting room that I sat in every morning for a month and many times after that in the early post-transplant days. The pain was bad. The gastrointestinal symptoms were starting. I started a fever. As I waited to be called I texted Jennifer these latest updates. She was communicating with my GI doctor Nikhil. My sister was feeding me water.

Based on my verbal history and symptoms the light bulb had turned on and they were guessing that I was having an allergic reaction to the Remicaid infusion I'd gotten ten days before. It's a biologic--a medication made from antibodies grown in a lab that are infused into my body every two months to reduce inflammation and get my colitis into remission. It costs $13,000 every time and insurance partially covers it. Due to an insurance gap, some financial concerns and a few months of focusing primarily on my liver labs and what was going on there I had skipped a few treatments. When you do that and then re-introduce the medication into your body you can sometimes have a lupus-like reaction as your body says "Hey what's this crazy shit? We don't like this anymore". All my joints were inflamed because my super crazy powerful immune system was on attack. Which is what it does, especially under stress.

So even though the labs wouldn't be back for several hours, they felt pretty confident that was the problem. When the fever joined the fray Jennifer asked me to come up and see her after my blood draw.

Side note: I got my blood drawn and officially decided to end my unofficial social experiment when it comes to getting my blood drawn. I will no longer be gently suggesting that phlebotomists and nurses draw from the veins in my hands rather than the veins in my arms. No one listens. I will now be saying "You may not draw from my arms." We'll see how that goes. It happens the same every time--I tell them the veins in my arms don't draw, I watch them check out the veins and see the same thoughts pass behind their eyes--I can do it, they're right there, I'm going to try. And then they not only stick a needle in they then move it around inside my arm a couple times in an attempt to get into the scarred vein that's so close they can almost taste it. And then no blood comes out. Hello everyone. Welcome to my care team in which I am a vital part of the process and the owner of these arms. You do not get to decide anymore.

Blood finally drawn. Limped up to see Jennifer, rockstar mother of three young children, liver doctor and friend who always looks like a million bucks. She took one look at me and said "Oh."

She'd been initially concerned about my liver, because that's her main job and because I'd recently had a stent placed to drain a a stone out of my bile duct. She checked me out, confirmed no pain in my abdomen and asked what I wanted to do next. She could admit me so I could rest and not worry about the kids or anything else. Or she could send me home on a bunch of prednisone and pain killers, with the option of coming back to be admitted if I decided that was necessary. I chose Option B.

My sister loaded me up into her fast little car, after filling my prescriptions as I sat curled up in a chair in the lobby. The pain was very, very bad. She turned the seat heater on and the warmth, plus the first dose of pain meds, slowly sank in and gave me some relief.

As I write all this down I have to smirk in sad disbelief at how long it has taken me to truly see how fragile I am. I'm just so used to it. There's often even a strange comfort that comes when I'm in a medical crisis, because I know how to do it. I know how to be a patient.

My immune system is a super nova. When I am under threat, from the inside or the outside, it blasts everything in site--even my own self. It does this even though daily I take two medications to suppress my immune system. This is the cost of my force of will.

I have shown, over and over, that I can do almost anything. Survive fulminant liver failure when everyone around me thought I was going to die. Get pregnant when the doctors first told me I couldn't and then told me there was a less than 5% chance the IVF would work. Carry two sets of twins, post liver transplant and knee-deep in a three year colitis-flare. Work full time in a job it turns out I hated, even when I regularly had to walk quickly to the bathroom with diarrhea and regularly had to gentle rub my belly as the cramps surged through. Take care of four kids by myself some days and even occasionally make a good dinner while doing so.

I have refused to let my medical conditions determine my life. Straight refusal. Rolled my eyes when my mom asked me, over and over, to take it easy and be gentle on myself. Shrugged with modesty and a "whatever" whenever someone reacted with wide eyes to any one of my tales. It just is. What can I do about it? Just keep living.

But I think I will work on giving my tired, hard-working, traumatized body a break now. I will open my hands and let go of the false control that I've believed myself to be exerting over the world and relationships and circumstances around me. I will gently take my body's hand and lead her out of the forge where she has been working too much overtime for too long. I will not rely on the pills and my mind to hide the truth of what is happening in my cells.

I'm Megan and I'm medically fragile. I need special care. All help welcome.