The Skin I’m In

I don’t like public pools. I also don’t like white clothing, no matter what time of year it is, or shorts. I refuse to wear shorts. I won’t sunbathe, or wear short sleeved shirts in public. I don’t like tight clothing, or thick stiff fabrics (I would suck in the Navy).

But I’m not the Grinch Who Stole Summer – although that would make life a bit easier for me. I have severe psoriasis. I have it everywhere.

“Do you have it in your intergluteal cleft?” a young doctor once asked me. He had very intense blue eyes, hair that looked like it came out of a mold, and Superman’s chin.

“My what?

“Intergluteal cleft” he said more slowly, as if that would help the words make sense to me. It did.

“You mean my BUTT CRACK?”

Let me take a moment here to explain a bit about my relationship with doctors. I am simultaneously a young doctor’s wet dream and worst nightmare. They walk in the room after reading my chart with stars in their eyes. I am like the only live creature in a freak show. I go to a teaching hospital, which means the senior doctors will literally bring their interns in to my appointments for “show and tell”. This usually doesn’t bother me one bit. I am ALL FOR doctors learning about the conditions I live with.

Yes, for fuck’s sake. Study me. Take a real good look. Learn the difference between pustular psoriasis and dermatitis. Be able to tell the difference between Behcet’s Disease and Herpes Simplex, and you may avoid ruining some poor girl’s life.  

I’m a fascinating medical oddity to young med students, and they can’t wait to check me out, but usually an appointment or two with me, and those stars in their eyes fall with the downcast glance as they hear all of the unsuccessful treatments I’ve tried.

Poor Baby Doc. I too once held the hope that you’d bring me a cure. There, there, now Baby Doc. There, there.

But sometimes I’m in a mood, or maybe the Baby Docs just look a little too much like a super hero wanna-be for their own good. Misplaced confidence has no place in the medical field. That’s when I’m there to bring them down a notch.

Doctor Superman couldn’t bring himself to say the words “butt crack”. So I said it a little bit louder.

“Are you asking if I have psoriasis in my BUTT CRACK? Yes, I do. I HAVE PSORIASIS IN MY BUTT CRACK. It hurts. WHY??”

He turned a very amusing shade of pink and took notes.

That’s the thing about some of the baby docs; once they’re done with their rotations, they get to apprentice in an office. All this means is that the Doctor in charge of you gets to send you in to the office to do all of the dirty work. Then after they’ve asked all of the humiliating questions, the Real Doctor enters the room like a rock star, takes a quick glance at you to confirm or correct Baby Doc’s observations, then prescribes something useful that will solve the problem. Baby Doc is left in a cloud of Real Doctor dust; all of the work and none of the glory.

On that particular day it was a 0.5% cortisone cream, but enough about my butt crack. I was talking about public pools.

I look like a drunk toddler attacked me with pink and red markers. I am not kidding. I have pink and red splotches all over me that come and go. Some of them leave scars. Others, like the patch that takes up most of my left shin, never go away.

Sometimes it looks like the measles, or chicken pox. Other times it gets really scaly, and I can tear tags of skin off the size of corn flakes. It will develop thick, white “plaques”. Get those in the right place, and they crack. Then you have what I assume is called a “fissure” which is basically a crack in your skin that doesn’t heal.

Those fissures, and sometimes the skin under the large flakes that come off of me, will weep a clear liquid. You’ve seen it when you pick a scab too soon. It’s your skin’s moisturizing heal-cream or some such. That shit will dry and make your skin stick to your clothes. You don’t notice it right away. Then you move, and suddenly you’ve waxed a random part of your body, except that body part didn’t have any hair, and you just ripped a small part of you off with your shirt.

Blood is way stickier than the clear liquid. And it really sucks when you get it along your bikini line, let alone your “intergluteal cleft”. Imagine the feeling of someone running a sharp knife up your butt crack every time you take a step. That’s what it feel like when you’ve got psoriasis in your crack.

Psoriasis isn’t picky. Psoriasis is much like the Honey Badger, and it really does not give a shit what you think. It’s gonna go where it wants, when it wants, and do what it wants.


In fact, that Honey Badger probably has psoriasis in its butt crack too.

But aside from the pain and weird splotchiness of it all, it itches. It itches worse than anything I’ve ever experienced. It’s the kind of itchiness that will drive you mad. Literally, it makes you kind of crazy. I have had moments when I scratched until my skin was raw, and still not had any relief. It’s an itchiness that truly makes you want to scream, cry and rip your own skin off, and it really isn’t something that’s part of a healthy, productive lifestyle. When you fantasize about ripping off your own flesh like a possessed person in a horror movie, going grocery shopping at the neighborhood store can be … awkward.

The relief you feel from scratching isn’t decent either, but that isn’t because of the pain. The satisfaction you get from scratching that itch is best left behind closed doors or with your intimate partners. It’s the kind of satisfaction that digs a buzzing laughter from the bottom of your gut that tickles the tip of your nose. It’s a reflex, it’s unstoppable. It makes you feel like a junkie getting a fix. It might be the second best thing to sex. This is particularly awkward when you’ve got psoriasis up your nose. No one wants to feel that good while picking their nose. Just trust me on that.

Then there’s the blood. There’s the blood from the fissures, the blood from the flakes. The blood from the scratching. Not that I ever wore a lot of light colored clothing, but I had to give almost all of it up, because I got so tired of cleaning blood spots out of my clothes. It usually isn’t much, unless I’ve been scratching. I have had people pull my hand away from my body, only to find my fingers and fingernails encrusted with blood. I don’t even notice.

There are the occasional benefits. I’ve had dear ones who lovingly took the time to apply ointment to the spots on my back, one by one. “Anointing” they called it. I’ve had my spots called “constellations”, or “braille that says ‘I love you’ over and over.” I’ve been told it makes me unique, that it’s actually kind of iridescent and pretty. I want to believe them. I do. I try to tell myself that a map to a fantastic world is surfacing on my skin and sinking in the tides of my flesh. An invisible painter comes to me in the night and paints my body like a canvas. One of the benefits of always having brand new skin – psoriasis is the immune system attacking the skin, causing the rapid dying off and replenishing of skin cells – is that it is very sensitive. That can make a tender touch blissfully  overwhelming on a good day.

I am ever changing, a chameleon. I am unique, even from myself.

It creates a very odd distance between me and my skin. I often feel like an unwelcome tenant. But I am here.

So you’ll forgive me for not donning my itsy bitsy teeny weeny bikini and running to the nearest pool full of kids on their summer break. Even when shopping at my local Target, I’m mindful of the glances I get when my patches show. I can’t really blame them, they don’t know that I’m not contagious. If I was in a pool of water, I’d be nervous if someone with open wounds came at me in their birthday suit too.

My birthday suit and I have a complicated relationship.


Sure, You Get Runs For a Few Months, and then they want to stick a camera up your ass.

I have been through many strange things. Lots of them are funny, like this experience I wrote about 15 years ago. Enjoy.

circa Spring 2000

OK. Here’s the story:

I’m on Pills. A lot of Pills. Arthritis won’t go away anytime soon, since they’ve only just figured out the fruitfly and haven’t worked their way into the magic of mammalian DNA. So I take my Pills. I have big Pills, little Pills, Pills for symptoms I have on my own, Pills for the new exciting symptoms the other Pills give me. Pills for the hell of it, Pills out of necessity. Pills
so I know what day it is. You know. Pills.

Some of these pills are actually quite scary. For instance: Methotrexate. A friendly little pill that you take several of once a week. They invented it while doing cancer research. It’s basically a chemotherapy drug. It squashes my immune system so that it won’t go crazy and eat up my cartiledge. That’s cool, I guess. I mean, I’ve lost a lot of my hair — not that I’m bald — but generally the disease isn’t running full throttle in my body, thank God. The bad thing is that this pill is actually quite toxic.

So, rewind to last fall. I’m still whirling from all these pills being thrown at me, although it’s been a year since I was diagnosed. You’d be amazed how long it takes before you can wake up and automatically swallow a dozen little hard things without thinking about it. I’m going through life, kind of cranky and stressed out because I’m exhausted from working 32 hours a week and trying to convince everyone that I’m ok. I’m in the bathroom, when I notice that that is about the third or fourth time I’ve had forceful diarrhea that day. Then I think about it, and can’t remember the last time I took a nice, healthy, solid shit. I bring this up with the doctor later that month in SF. She says this is actually a bad thing. Methotrexate, the happy Pill which owes its existence to Phillip Morris can cause your intestines to turn toxic. Now, I don’t really know what that means, but it makes me think about have a Nuclear Power Plant
in my gut, and that’s Not A Happy Thought. But, since I can’t really give her a start date on my runs, she says that we’ll wait and see, and threatens me with a colonoscopy if it doesn’t go away.

Naturally, I tense up and shit bricks for a few days. I call her up, say everything’s a-ok, and thank you, I don’t need Kodak up my butt.

Then I get a call from my Humboldt County doctor. My monthly lab results are back, my hemoglobin is way down. I have to get the colonoscopy done because something in my intestines (NUCLEAR POWER PLANT) could be the cause. So I stress. And stress. They send me to a gastrointestinologist, which I can barely spell, let alone pronounce, and she is a very stern woman who wants to know all the intimate details of my feces. Now, I don’t know about other people, but for me, my shit gets to be an old topic really quick. They tell me not to worry they will schedule the colonoscopy and it will be a painless and easy procedure.
But first, they have to run a few tests.

I’m given a cardboard thingy with three slide slots, some tissue paper and some popsicle sticks. For three consecutive bowel movements I have to put the paper in the bowl, go, then fish some out with the stick and put it on the slide. Great. I do that, not without squirming. It comes back healthy.

“But we have this other test for you to do”, and they hand me three small tupperware containers and three biohazard bags. I am beyond screaming now, I just take the stuff and go home laughing. So I have to “go” straight into the containers. Imagine trying to figure out how to aim, and when do you know if you have enough? If you try to look it messes up the aim and you have shit in your hand. Anyway. I did my best; didn’t get a handful.

I was driving one of the samples to the lab one afternoon; it was in a little biohazard bag on the seat next to me. I’m cruising along, trying my damnedest to not freak out about this because I’m sure I’m not the only person in Eureka with a bag of shit in their car. Driving down “I” street, half way to Harris, I’m just starting to hum along with the radio when I look in my rear view mirror, and lo and behold, there is a police car behind me with its lights on.

My heart sank down and my stomach jumped up. This mad cackle broke through my lips as I tried to think of how I was going to explain the biohazard bag on the seat next to me without seeming suspicious.

“What’s that you’ve got there, ma’am?”, he would say.

My mouth would go tight, I would look over casually at the bag and say, “Oh, nothing” while I simultaneously slammed my foot on the accelerator.

Or he would accuse me of speeding and I’d have to explain that I was really in a hurry to get to the lab because my poop doesn’t keep for more than an hour unless I refrigerate it, and since my boyfriend wasn’t too keen on the idea of having my feces next to the veggies and meat I need to get it delivered as soon as possible. My mind was counting the endless
possibilities as I slowly pulled over, took a deep breathe, tried to keep the tears from pouring down my face ……. and he passed me. I was so fucking relieved I don’t even remember what happened next. But I got the shit to the lab on time.

The next I had to spend a day in a gown with the x-ray people. They made me drink this radioactive milkshake — and no, I don’t recommend it as flavor of the month — Then they took pictures of it as it travelled down my throat and through my small intestines. Now this I didn’t really mind, because the technician was really nice. She chattered at me and laughed when I belched, helped me on and off the big table and generally made it seem like I was a
guest in a home rather than a patient in a flimsy robe. There was another guy who would come in and poke me with a wand and take still pictures, but he was an asshole. Aside from being treated like a slice of meat by him it was really cool to watch live action shots of my digestive track. I’ve already seen the inside of my stomach, when I had to be checked out for ulcers, I’ve seen my ovaries and uterus in a sonogram, and now I’ve seen my small intestines. I figure I’ll have seen all of my internal organs at some point, and that should put me in some record book somewhere as The Girl Who Saw It All Without Dying.

I had to get up and walk around every now and then as the radioactive goo got into my small intestines, so that it wouldn’t just sit there. So I trotted around and encouraged my intestines to push it on through. I kept belching. It became a  bit of a game — burp, push, push, burp. After about two hours I was done, which was quite a feat, considering that they had said I could be in there for up to 10 hours. I guess I’m a speedy processor.

So, aside from some funky wind that came out from down under, I was feeling fine. Then I went to the bathroom. My shit was WHITE. They had mentioned that there might be some discoloration, but that really doesn’t describe the albino crap that was coming out of my body. Only then was I a bit more concerned about what I had graciously consumed while in the x-ray room. It lasted for about three days.

The colonoscopy finally happened after about a month of waiting and playing around with my poo. I couldn’t eat for two days. I had about seven different kinds of laxatives pumping through me. I was shitting like a mad man. I had the burns. Let me be the first to tell you, since no one at the hospital is likely to mention this: when you are running to the bathroom every five minutes and literally blasting fecal matter and strange water out your backside, your ass will hurt really bad after the first hour. And that doesn’t mean that it’s going to stop coming out anytime soon. It is best to make a clear path to the bathroom, and tell anyone else in your house to fuck off and relieve themselves somewhere else, preferably far, far away. Or better yet, just plop your burning ass on the john, and stay there for the rest of the day. You can try to read a book, but chances are you won’t be interested in it. You will also want something to ease the burning, that is, if you can stop shitting for five minutes to get some on yourself. Take care of your ass. I used Desitin. 

I was so cranky. I wanted food, but that just wasn’t going to happen until they got a real good look. I had two enemas the morning of the appointment. You have no idea what kind of hell that is. By the time I got there I was hurting so much from not eating and from having every propulsary drug that man has ever invented in my body that I didn’t care who saw, heard or smelled anything. I wanted the colonoscopy. I wanted it really bad. I came to the realization that they didn’t make me use those suppositories, enemas, pills, liquids, and whatever else to clean out my system —  they did it to make me so miserable by the time I got there that I would bend over and beg for them to look at my insides. Go figure. They take away your food and powerblast your insides and then you are their pawn.

I understood and I gave up. “Please, please doctor, I’ll do whatever you want. Just give me anesthesia and make me forget what happens. And I promise, you can stick anything anywhere and I won’t argue. I just want this all to go away.”

They came, they saw, they took pictures and gave me copies. I farted like a monster for next few days, but the enchiladas I had that afternoon had never tasted so good in my life.

I’m fine. On my last Doctors appt, at which we went over the colonoscopy results, one of the Senior advisors for the arthritis clinic had the brilliant idea that I might be Lactose intolerant. Take some Lactaid, they said, and let us know. I have been on that for a week now and I only go once or twice a day, no runs. It was so wierd at first that I thought I was constipated. Turns out I’m just plain regular.

All of that pain and stress and embarassment, and my problem is dairy products. Goes to show what you can learn from sticking things up your ass.

The Tree

Are you breathing? 

No. Okay, you have to remember to breathe. Take a deep breath. Good. Stop gritting your teeth. Well, try, at least. That’s good enough.

Now, focus. What’s necessary right now? Have it? No, not that. You don’t need that. You need this, this and this. Okay. Doing good. Still breathing? Stop holding it. Take another breath. Alright, progress. Stay with me here.

Let go of everything that doesn’t matter, and right now that’s everything except for these three things: breathing, getting this done, and not screaming. Okay maybe four things; keep trying to NOT grit your teeth.

You’ve got this. You’ll be fine. Breathe.

You keep forgetting to breathe.

I was auditioning for plays. I had my back to the directors – of which there were three, and was taking a moment to collect myself before I started. It was a combo audition. One audition, three shows. I had a monologue memorized and I felt pretty good about it. I turned around, smiled and launched into it. It was some spurned woman thing, it had a range of emotion in it that I thought would be good. If I remember right, I got roles in 2 of the 3 plays, but ended up performing in only one of them because of schedule conflicts. Nailed it.

It was the fall of the rheumatology diagnosis. I’d been put on drugs that weren’t necessarily working completely. My pain level was still pretty random, and the university I was attending was built on a few hills. Hills & Stairs University was its common nickname, and it was very well earned.

I’d already had my graduation ceremony, and I had 1 semester left. Because I was finishing in the winter, they let me choose whether or not I would participate in the Spring ceremonies before or after I finished. I opted to do it early. I remember ordering my robe and hoping to God that I would be able to walk that day.

“Are you going to walk?” People would ask me, when they heard I was finishing my Bachelor’s.

Good question. If only they had known how concerned I was about literally being able to walk across that stage.

I did just fine. There’s a picture of me accepting my diploma from the Dean of the school. I have a bemused smirk on my face, and an eyebrow cocked. I had been so focused on being able to walk, and just generally nervous about the ceremony, that I hadn’t noticed him until just then. I remember exactly what I was thinking at the moment. “Who the hell are you?”

HSU graduation

But that fall, walking was much more of a challenge.

There were days when my roommates would help me walk as far as I could. I’d be flanked by them, and go as far as I could handle before my knees couldn’t take it anymore. I’d focus on the cracks in the sidewalk and push myself. Every step took every ounce of my energy, and all of my concentration. I was lucky to make it to the corner and back. It took so much energy just to get that short distance, but I did it anyway.

Nowadays, I try not to do things out of spite for my own health, but in the beginning spite and anger were my bread and butter. It’s what literally got me out of bed every morning and into class. I was seeing an acupuncturist at the time who had me on the macrobiotic diet. During one session she informed me that if I really wanted to take care of myself, I’d quit school and focus on my health. I’ve never been a quitter. After she left the room hot tears of rage ran down my face and into my ears. No, I would not quit. My theater degree had been all I’d ever wanted for years. No one would take that from me. How dare she even fucking suggest it? Fuck you. Fuck you. Fuck you.

So I took those short walks with my roommates when I could. I took the much longer walks past 2 soccer fields and up 3 flights of stairs to class. I focused on the ground as I walked. Slowly, slowly, slowly up the stairs. Sometimes someone would leave the door to one of the buildings ajar and I could use the elevator to skip a flight. Sometimes not. My knee joints ground together with every step, but I just took my time and got there when I could – the tortoise in a race with an imaginary hare.

Then there were the times when I could not make the walk. On those days, I’d be lucky to get out of the house at all. Making it to the living room was an achievement.

One night I woke up in the wee hours with a completely full bladder and knees in searing hot pain. I had two choices. Get up and use the bathroom, 1o feet away from my bed, or stay in bed and wet myself. I considered it. Could I go back to sleep, hold it until the morning? Nope. I was totally gonna piss myself. Alright. Roll over on your side, fuck yeah, that hurt. OK, now sit up. Never mind that you’re naked and you have to go out in the hallway. No one is going to see you, the roomies are asleep. Now stand.

I took one step. One small step in the dark, and came crashing down on all fours. Straight onto my knees and wrists. The pain was unbelievable. It knocked the wind out of me. I am still surprised that I didn’t pee myself right then and there. I think there must be some sort of reflex in your body that prevents you from urinating when you go into shock. It was impressive. Because I still had to go. Badly.

I crawled the remainder of the way to the bathroom in the dark, and levered myself up onto the toilet with the biggest sigh of relief.

“Oh, thank God. Oh, sweet Jesus. Oh, man. Fuck.”

I was stuck.

I wasn’t stuck in the toilet, mind you. I just couldn’t stand up. The thing that happens with an arthritis flare, aside from the pain, is loss of strength. Your limbs just won’t do what they used to do anymore, no matter what you tell them. No amount of cursing or coaxing will help, and believe me – sitting naked on that toilet in the middle of the night while my roommates slept on the other side of the wall, I tried.

I finally had to get help, or I would be there until morning. I started to bang on the wall. Each bang was more desperate than the last. I was humiliated, and defeated. It took my roommate what seemed like forever to finally come to the bathroom door to see what was going on. As soon as the door was open a crack, her eyes widened and I started sobbing. She shut the door quickly and offered words of encouragement while I cried myself out, then suggested that I grab a towel from the wall to wrap around myself and she would help me back to bed. Those 10 feet back to bed were longer than the 10 feet I crawled to get to the bathroom.

I tell this story now, and I laugh. It was ridiculous. But if I don’t laugh, I’ll cry.

Later that same fall, I was on the floor in the living room. I don’t remember why – probably because the couch was too uncomfortable, but more importantly because I could not get up. Again. I could not get up and I was pissed.

I wanted to die.

It’s quite the thing to be in the prime of your life and then not able to get yourself off of the floor or the toilet in a matter of months. It makes you wonder why you’re alive at all. your friends are out partying and doing all the silly things 20 somethings do. The girls are on their backs having crazy young sex, and you’re on your back with only enough energy to stare out the window and damn God for your existence.

I can’t do it anymore. I can’t. I’m sorry. I’m not strong enough. The pain is too much. I can’t. 

No one answered. It was a beautiful day outside. The Northern Californian sunshine has a particularly shiny quality during certain times of the year. The sky is an almost absurd blue. The clouds look happy, and the breeze dances through the trees.

I don’t understand. I don’t understand why this is happening to me. Just let me die. Please, just take me. I’m ready.

I have tried to will myself to die exactly twice. The first was from an unbearably broken heart. This was the second time, and I had a lot more motivation.

Take me. I’m here. I’ll go. I want to go. 

Nothing happened.

I looked out the window to the blue sky, the happy clouds and the dancing breeze. There were trees across the street with gorgeous dark red leaves.

Give me a sign then. Tell me how to do this. I need you to tell me how to keep living. I can’t do it on my own.

That’s when I noticed my tree.

It was probably a plum tree. The blood red and maroon leaves flashed in the sunshine as the tree swayed in the wind. The wind got stronger, and the tree bent with it; allowing the forces of nature to have their way, but not breaking. The tree flexed and bowed, back and forth, letting the wind wash through it. Never giving up its roots.

As the tree danced back and forth like a waiving hand, it hit me with the utmost clarity. This was my sign. This was my message from God. This was how I could live my life. Nothing else mattered in that moment, except that tree.

I could not change the wind. I could not change life. Life would happen anyway, and I could either dance in its fury or I could remain rigid and be blown away. The pain didn’t matter, not in the long run. My anger was pointless. My body was irrelevant. It was my movement, or rather my surrender to the movement of the winds around me that mattered. How would I dance with my troubles? Clumsily? Sure. But all I was being asked to do was try.

Just try. Bend and sway, bob and dip. Try. Nothing else matters.


Are you breathing?


Oh Dear! Or, why I grabbed my boob.

One of the things about pain meds is that they don’t always make the pain go away. Instead, they make you apathetic about the pain through distraction or chemically induced warm fuzzies.

The upside of this is, obviously, you don’t care. The down side is that you don’t really care or notice other things too. Things you might normally be very mindful of, such as, say … being inappropriate at work.

So there I am, sitting at my desk, blissfully distracted from the neuropathy that has been absolutely maddening for the past week. My doc has suggested that I take more pain meds to control it. I dutifully took one this morning, something I wouldn’t normally do because, HELLO, pain meds at work aren’t always the most productive.

Even when I’m, shall we say, “sober” lately, I’ve been preoccupied by the changes my body is going through over the past month and a half. I’ve lost 15 pounds. FUCK YEAH! But of course this means that a unfair portion of this weight is coming off of my boobs. Not fair, Universe. Totally not fair. I was a AA until steroids, and my C cups were the only good things Prednisone gave me. I am now probably heading towards a B. Sigh.

I was working on a spreadsheet, thinking of numbers and my shrinking body. I was totally productive, mind you. But I felt something warm on my right breast. I look down, and there I am at work, for all the world to see, cupping my own right boob in my left hand.




There are mornings on which you wake up and everything hurts. Sometimes it’s emotional, sometimes it’s physical. Usually it’s both.

The alarm is barking at you. Opening your eyes feels like a curse. You burrow deeper into your pillows and blankets to escape. The soft cool sheets feel like a lingering hug of a long lost lover, but it’s too late. You’re awake. Now the choice is whether you’re going to stay in bed, awake, or get up. You start bargaining.

I need this to stop. If it could just stop for a few minutes, I’ll totally get so much done today. I need some peace. Please. I’ll start working out. TODAY. And I won’t eat anything greasy. I won’t text that asshole, although it would be nice to … NO, no. I won’t text. I will remain positive, and keep positive, healthy people around me. I’ll MEDITATE. Do some yoga.  How about that? That would be nice.  If this could just stop for a minute, please.

The negotiations fail. You hit snooze on your alarm, roll over slowly and try to go back to sleep for exactly 9 minutes.

After hitting the snooze button no less than 2 more times, you take a breath and stare at the ceiling. It’s time to do this. You just need a reason to get up; something that is more potent than the pain.

You could do it out of spite. Give your pain the middle finger and go fucking jogging if you want. Anger is a great motivator. It almost works. But what kind of person are you, doing things out of anger? That would take too much energy. You don’t have that energy to spare.

Excitement takes just as much energy, so you can’t use that. There’s nothing to be excited about – nothing as exciting as staying in bed.

Obligation? Yes. You have loads. There are errands to run, pets to feed, work, family, that book you were going to read …. It can all wait. One of the pitfalls of being a single adult is that no one’s going to scream at you if you don’t get your own errands done. Well, not today.

Suddenly the disgust hits, and you realize you’ve been lying in bed in the same position long enough that THAT hurts too.

Now you have your motivation. Pain. It’s as reliable as the sun rising in the east, but much less pretty. You sit up. Here you go. One, two, three … left foot, right foot, you’re brushing your teeth now, taking your pills. The shower feels pretty good. You bend over and touch your toes while the water massages your lower back ever so gently.

I’m okay now. It’ll be okay. Today is do-able. What am I going to do?

You need a Happy Thought, and your mind stalls. Your Happy Thought will be your direction, and you’ve gone through all of this to get out of bed so your direction needs to have Purpose. It says something about you, this Happy Thought. We all make these decisions every day to pull us through our lives.

You got up. You kicked that morning’s ass. You’re out of the shower now, and you can do anything. Anything you want, because you overcame the morning, and now this day will be worth the effort. That’s your Happy Thought.

And so it goes.

The Little Things

Truth be told, I’ve been trouble since I was born. I was born with jaundice, which is really no big deal, I guess, but I went on to have one medical emergency after another. But that’s a story for another time. Right now is the time for the tale of how the major medical issues that I’ve had to deal with as an adult started.

It began as a lot of major problems do – with my left ring finger. I was about 25, maybe younger. I weighed all of 120 lbs wet, was living in my first apartment with my plant Herbert, and was pursuing my long time dream of getting a degree in Theater Arts. I was full of the usual 20 something drama, to be sure, but I was also pretty stoked. I was going full throttle – 30 credits in a semester, back to back shows. I was writing plays, directing, acting, stage managing, and running lights. I was working with AWESOME people. Of course I didn’t appreciate it as much as I should have. 40 year old me would kick 20 something year old me’s ass and tell her to quit moping because that one guy didn’t like me as much as I wanted, and to appreciate her good looks, talent and general good health on their own merit. But that’s what being 20 something is like, and this what being 40 is like, and … there you go. I was a hot young thing. I could wear the micro-mini babydoll dresses that were the rage at the time. I could bend over and not be embarrassed when I got compliments. It was good times.

Then my left ring finger started to swell. At first it just hurt all of the time. Then I couldn’t bend it. But I didn’t think much of it. I was so busy, and even though it really hurt, I wasn’t going to complain about it. Look at all of the cool things I was doing! Do you really think I’m going to complain about a sore finger? Come on. I figured I’d just jammed it while moving around lighting equipment or something. Never mind that I wasn’t moving the lighting equipment much – it was heavy, and I am short. Surely, 20 something year old me thought to herself, it wasn’t something I needed to go to the doctor for.

It started to turn purple. It was so swollen, it felt like it was going to pop. You kind of can’t ignore or hide a giant purple finger that won’t bend. People look at you funny.

I finally went to my doctor, who I’d been seeing for half of my life. It feels strange to simply say that without qualifying which doctor. At that point in time I only had one. Now I have a small sports team. But he was a great guy. He was smart, we trusted each other, and he listened to me. We knew each other well enough that I could walk in and say “I have an upper respiratory infection, I need antibiotics.” He’d say, “OK, let me look. Yup, you’re right.”

He asked what brought me in this time, and I sheepishly offered my left hand. “I think I jammed it or something.”

“Or something”. Man, 20 year old me. I would kick your ass SO hard.

He ran blood tests. I can’t remember how it went from purple finger to blood tests – probably because it was purple – but the results came back and my white blood cell count was sky high. For those of you who don’t frequent your friendly doctor’s offices more than the grocery store, that means that your body is fighting something. But my doc was just a normal, Primary Care doc, he couldn’t diagnose it any further than that. At that point, I didn’t have a full understanding of what a “Primary” Care doc was. I quickly found out. He put me on prescription strength Alleve and referred me to a specialist – the local Rheumatologist. There was only one Rheumatologist in the entire county. His wait list was 3 months long.

Thus started the scariest summer of my life. Something was very, very wrong, but no one knew what it was. I spent the summer coping in the best ways I knew how. I tried to enjoy each day, facing the reality that it could possibly be my last. Ironically, a lot of it is a blur, but I remember certain aspects.

I was having trouble brushing my hair. My arms hurt. My hands hurt. Then I’d have a good couple of day and things would be fine. It would come back, and suddenly I couldn’t roll over in bed. I’d wake up groaning from the pain, laying on my futon in my awesome studio apartment of my very own, Herbert the plant standing guard in the corner.

Herbert was my first house plant. I still have him. We’ve been through a lot.

I moved in with friends to be closer to school, save money on rent. I went to acupuncture every week. I went on a macrobiotic diet and lost 20 pounds. I took herbal supplements. I had what is known to this day as the “suitcase of drugs” – which was actually my supplements, and not many powerful drugs at all. But it sounded good.

I started walking with a cane. Canes are real cool and all, but when you’re as young as I was and you are walking like you’re 112, it’s hard to pull it off as dapper or debonair. It just doesn’t play very well.  It’s really a damn shame, because that could have been fun.

I went to France that summer, with a bus load of senior citizens and my friend Becca. Kind of a weird thing to do when you have a mysterious medical condition, but when you think that it might be your last chance to see the world, it makes sense. We sang in churches all throughout France. We sang in Chartres Cathedral. We had a “Royale with Cheese” and got lost in the red light district of Paris. When the Louvre was on strike, Becca and I ventured off on our own to explore Montmartre. We saw where Picasso had lived, and Seraut. We slowly walked the streets that Antonin Artaud, Salvadore Dali, Andre Breton, Man Ray and Eugene Ionesco had walked. We were in Avignon when France won the World Cup. It was glorious.

I had my trusty cane with me, and walked with the mindset that if I acted like it wasn’t there, then everyone else would ignore it. It worked, most of the time.

Inevitably I’d get The Question. I hate The Question. The Question always comes from some know-it-all who thinks they’re being cute or funny. In some weird way, they think they’ve caught you in a “gotcha!” moment, and have absolutely no concept of empathy. They’ll bobble their head around, look me up and down, and ask, “Aren’t you too young for that?”

I think I may have tried to explain it off at first, or something. But it really never mattered. They didn’t really want to know that I had an undiagnosed, possibly life threatening, extremely painful thing going on with my body. I quickly learned to answer their question directly, and unapologetically.


Yes, you motherfucker. Thank you for pointing out that life is unfair. Thank you for asking me to defend my physical condition. Thank you for reminding me of my lost youth. Thanks for implying that I should “know better” or be able to fix this some how, because I have just started out in life, and surely I can overcome anything. YES, I am too young. YES. Now what? Of course you “didn’t mean anything by it”. I’m sorry I “don’t really look sick”.  I am WAY too young to be walking with a cane. The fact that we agree on that doesn’t change a thing.

I may have some misplaced anger or resentment issues going on there. I don’t think many would blame me.

It was finally time for my Rheumatology appointment. Hopefully I would get answers. I was terrified. The day before the appointment, I called my friend Dave. I told him I was scared because I didn’t know if I was going to be told I was dying or if it would all be cured by a magic pill. He came over and we had a fake sword fight with cardboard tubes from used up wrapping paper. Dueling Dave with a tube of cardboard was the most cathartic fake sword fight I’ve ever had, and I’ve had a few.  Thank you, Dave.

All of my life, my mother had accompanied me to my medical appointments. I needed her as a child, of course, but as an adult I needed her as backup. Many times I was too ill to remember everything the doctor told me, but she would. And she was my mom, which seemed reason enough. But for this appointment, I needed to do it alone. I had no control over anything else in my life, but I would have control over this. I’d face whatever the doctors had to tell me on my own, and tell the world on my own terms, in my own words.

I’ve failed to mention that throughout this I had dandruff. The back of my scalp was super scaly. It had always been that way, and I didn’t think anything of it.

The rheumatologist was a cigar smoking man’s man. His office was full of dark wood, and I’m pretty sure there was a taxidermied animal head or fish mounted on the wall somewhere next to a picture of him fly fishing. He had no tact. I didn’t know or trust him, like I did my Primary Care doc. He was all business, no heart. I didn’t much care for him, but I respected that he was an expert, and I needed his expertise.

It was decided that I had arthritis. I was not going to die. I was, however, going to be put on drugs that might make me feel like I was going to. Low dose chemotherapy medication is a common treatment for severe arthritis. So are sulfa drugs, and he put me on that too. Huzzah, answers. Huzzah, treatment.

It wasn’t a quick fix, but it was something. It wasn’t as much of a relief as I’d expected. I was glad I wasn’t dying. All of the mental preparation I’d gone through to hear that was for naught, but it was a learning experience. I can’t say it hurt me. In many ways, I’m thankful. It helped me appreciate every day. It helped me slow down, and appreciate every little thing.

It was a life sentence. Hopefully a run on sentence, not a fragment. I’d have to figure out the punctuation to make it right. And that’s how my left ring finger changed my life forever.