Well, Hello Sailor!

So I says to Mabel, I says.....

 

 

So in case anyone still reads this blog, you might have noticed I took a tiny break, just a few days off to relax, kick back, eat some Milano's, watch a little Lifetime....oh right. I TOOK OFF A FUCKING YEAR. I avoided this blog for a year, and now I'm back and swear-ier than ever!

 

Sorry about that.

 

The absence, and to a lesser degree, the swearing.

 

Things were good, things were bad. I was happy, I was sad. I met a cad, his name was Vlad. I could go on like this for days (don't be mad).

 

As is so often the case with my colon, I had good months and less good months; during the good months, I promptly forgot about the previous months and went about the daily business of living, and when things got worse I would actually be a little surprised, as though I hadn't experienced the exact same delightfully life-inhibiting symptoms 4 or 6 or 8 weeks before.

 

I'm sure this is some complex coping mechanism, or simply self-sanctioned colonic amnesia. Either way, each time things take a turn for the worse, it's like a little betrayal, instead of something that I should definitely be expecting four years (!!!!) after my diagnosis.

 

After failing two different blood tests AND a super fun stool test (and by failing, I mean overachieving in the inflammatory markers department), I'm going to change my meds around this week in hopes of turning down the drama in my AAC. I would say "with the goal of re-inducing remission," but remission is a word that I'm not really comfortable using with my Crohn's. Remission seems to indicate a cessation of symptoms, a return to normalcy, a complete reversal of disease. I know that's a very black and white way of looking at it, but since I was diagnosed I've never had that kind of clear cut difference between disease and.....not disease. I just seem to have varying degrees of disease activity.

 

It's like a pot simmering on the stove. Sometimes the heat gets turned up and the pot boils over, and sometimes it just simmers away in the background, but no one ever turns off the stove.

 

I was at the eye doctor the other day, dealing with some fun inflammatory eye problems (thanks Crohn's!) and I was asking him if the increase in medication might help with the inflammation in my eyeball. His response:

 

"I think it might. You know, some people are just really susceptible to inflammation. Inflammation from your Crohn's, inflammation in your eyes, it's all just inflammation. You just have a lot of inflammation going on, so lots of things get irritated. You just have a lot of inflammation going on. Inflammation inflammation inflammation inflammation inflammation inflammation inflammation."

 

Just kidding about the last part, he didn't really say it, it's just that after the first part I kind of tuned him out and he sounded like that teacher in Peanuts. Also, thanks for the pep talk Doc! This is why I don't feel guilty for stealing eye drop samples from your exam room.

 

I had a really good two months before April (and now May). Even a few good days will lull you into a false sense of security, so imagine what two months will do. All of the work you do in those good months, all the progress you make and the positive steps you take in your life, grinds to a halt. I was beating myself up the other day for not pushing through this kind of inertia that takes hold when I'm not feeling well, and I realized that along with the symptoms comes exhaustion, a kind of exhaustion I just settle into now. I just hole up in my bed with my cell phone, good magazines to take with me to the bathroom, six different layers of blankets (for the night sweats, when I get too hot and then when I freeze because I'm covered in sweat and have kicked half of the blankets off the bed), and an easy sense of resignation.

 

That's what I'm working on now. That's what I've been working on for the past year, when I haven't been blogging. How do you plan a life around an unknown quantity of good days, and how do you push through the inertia, the resignation, the self-defeat that so easily invades the bad days?

 

I haven't figured it out yet, but I'm trying.



Post #106: Dispatch from the land of produce

Warning: excessive amounts of produce consumption may cause intermittent vegegasms.
*Side note: it's just salad, lady. CALM DOWN. Don't overexcite yourself  before the main course. 

So! 

When last we left off, I was embarking on a shiny new diet. Two weeks in, I can now confidently report: 

1.) I have eaten more vegetables in the last few weeks than in the last few YEARS-combined. 
2.) There is no food that I wouldn't give up, or no new food I wouldn't try, in service of feeling better. 
3.) My digestive system is confused. 

Has this diet magically solved all of my digestive problems? Alas, no. Has it helped to lessen some of my symptoms? Yes. Is my AAC pleased with this change in routine? Not so much. 

I did pull kind of a bait and switch on my colon-one day it was all white bread and Gatorade, and literally the next day it was whole foods and roughage and whole grains and healthy fats and protein. I totally don't blame my AAC for being confused, and expressing this confusion in a variety of digestive complaints. 

For so long, I was afraid to eat these foods-I expected pain and misery and general internal havoc, and there has been some of that. But it was a leap of faith to attempt this diet in the first place, just as much as trying a new medication, and I want to stay the course. I've put in the time and effort, seen some return on that investment, and I don't want to let any symptoms push me back into the warm embrace of processed foods. 

This post is kind of a pep talk for myself-I had a bad day. And part of me wants to curl up in bed with a baguette (why does that sound so dirty?) and a dozen bagels (still kind of dirty) and write off the whole pursuit as a failed attempt, another exercise in dashed hopes and false promises. But even if my stomach hurts, and I'm running to the bathroom, and I want to hurl, at least I'm feeding my body with healthy, beneficial things, instead of snorting wonder bread and still experiencing the exact same issues. 

I know that can't be a bad thing. 

I won't let fear make me backslide, or push me back into my Crohn's rut. Every celery stick, every carrot, every tomato, contributes to the greater good. I have to believe that to keep going. 

Please note that I haven't discontinued any of the medication I'm on-these dietary shenanigans are in addition to many drugs I take on a daily and monthly basis. If this diet were making me feel actively worse all the time, I would seriously reconsider my commitment, but I wasn't feeling so hot on the drug regimen I was on. I'm just looking for more good days than bad, more energy, and the ability to digest produce. Hopefully, the drugs I'm on and the diet I'm trying will work together to make that possible.

the goal: happy plate=happy colon

Post #105: Dispatches from the land of wheat

This bread is sad, much like my colon. 

I spent over an hour wandering through the aisles of my local hippie mart, stocking up on bags of eight dollar gluten-free cereal and quinoa porridge, wheat free English muffins the weight of hockey pucks, and more produce than I have consumed in the last six months combined. 

I came prepared with double sided lists; I scrutinized each label for offensive additives, valuing purity of ingredients over taste and texture. I circled round and round the bins of dusty flours, spent far too much time choosing nut milks, and was so overwhelmed by the whole process that I didn't even think to head over to the cosmetics section for an impulse purchase (per usual). Exhausted, I loaded my purchases into the car and drove directly to the nearest pizza place. 

As I was somewhat guiltily eating my margarita pizza (sans cheese), I chose to ignore the shiny new wheat free foods banished to the dark corners of the trunk. As I sit here now, head pounding, body flushing, trying to keep said pizza down, three things are abundantly clear: 

1.) I am more afraid of this new diet experiment than I thought
2.) Emotional eating doesn't go away, no matter what your current relationship with food
3.) In some ways, I am more afraid of things changing (despite the possibility of improvement) than things staying the same

Isn't it interesting that when there is stress involved, the body overrides the mind's innate wariness about food and does a face plant into the nearest source of fat and carbs? In this case, food was both the cause of and (temporary, stupid) solution to the problem. Anxiety about changing my diet led me to eat a food with a high likelihood of making me feel like shit (mission accomplished!), all to avoid thinking about the other new foods I will be eating on Monday, which are healthier and probably less likely to make me ill. It's all very confusing. 

To put it another way: I am worried about eating almond butter when I have spent over a year ingesting/injecting a number of powerful immunosuppresents and other scary drugs with page long lists of potential side effects. 

It makes no sense. I know this. 

I could chalk this all up to nervousness about "rocking the boat," of taking any chance at altering the current, relatively stable (or at least predictable) condition of my bowels. I could say that I was worried about placing all of my hope in another plan, when other plans have failed so miserably. I could admit that I worry about making things worse, or messing up my body somehow, though the latter is unlikely. 

Those things are true, but I think the real reason I'm anxious is that this is the first proactive step I've taken beyond my doctor's guidance in quite some time, and as such is an acknowledgment that I want more, from my medicines, from my diet, from my life, from myself. 

It feels risky to not want to settle anymore. 

Especially when I know that more, in whatever form, might not be possible. 

And so tonight, as I try not to hurl, I am going to remind myself that any relative risk is worth any potential benefit. Just like I have to talk myself into trying a new pill, I will talk myself into this. At the very least, all of the new foods sitting benignly on my dining room table, sequestered from the rest of my pantry, are unlikely to give me nigh sweats, high blood pressure, joint pain, or tremors, and there is some comfort in that. 

Post #102: Great Expectations

Well, seeing as how you're already all gloved up.....

Hey, guess what I just had? My second colonoscopy of the year! Whooo. I seriously should enroll in some sort of "frequent flier" scoping program. Perhaps there is a punch card of some sort? A 10% off coupon for valued customers? A BOGO promotion? 

Everything went smoothly. I didn't talk to my doctor afterwards, but I did talk to the nurse who was in the room the whole time, and she said my AAC looked "ok." I read on the paperwork that he took some biopsies as well, which I knew because I had that delightful "kicked in the gut by a tiny, angry shetland pony" feeling in my gut. 

The day of the procedure was my Crohn's med injection day, and I read online that giving yourself the shot standing up was easier/less painful then doing it sittting down. Ha ha, THANKS A LOT INTERNET. I had a golf ball sized lump that is now a golf ball sized bruise, a constellation of green and yellow and purple dots staining my abdomen. My eye is drawn to it every time I step out of the shower. It looks about as violent as giving myself the shot sometimes feels. 

Sorry if this post feels scattered, but so does my thinking around this. I haven't blogged for a while, and it feels a little awkward. It's not like anything changed, in terms of my AAC; increasingly, I'm just getting sick of talking about it. About the food I can't eat, the weird procedures, the night sweats, and the joint pain (that's a new one)-how I feel like an 80 year old women when I come down the stairs in the morning, gripping the handrail and saying "ow. ow. ow." under my breath as my swollen ankles pop and creak in protest. 

Depending on the results of the colonoscopy, can I say that this medicine is working? Is it worth the side effects? And the most important question of all: 

Is this as good as it gets? 

I'm trying to wrap my head around it. I've spent so much time invested in the idea that I was going to return to a place of normalcy, where I felt healthy again. Where I felt good, and able, and strong. I'm not at that place; sure, I may be a few steps past where I was at my worst, but I didn't think this was the big "tah dah!" stage of this whole process. I'm not a shiny, perfect example of a successful "after;" maybe after a year and some change, I thought I would be. That probably wasn't a reasonable expectation in the first place, but it's what got me through. 

I guess I just don't know what I'm waiting for anymore. This might be as good as it gets. And if it is, how do I stop waiting around and start moving again? How do I progress when I feel like I'm still waiting to be healed? How do I shake the feeling that I should wait around until things are better? That is my inclination, but it maybe be time to reassess. 

All of this is floating in my mind, a perplexing stew of thoughts and hopes and feelings and fear. There's a little determination in the mix, a little hint of impatience. But mostly a dull confusion that makes everything hazy and difficult to discern. 

The recurring theme in this blog, and in my life, is a desire for clarity. I don't think colonoscopy #2, as delightful as it was, will give that to me. 

I just don't know how to wean myself off of expectation. I project my hopes onto every blood test and invasive procedure, looking for medical markers to guide me on my way, to help me make good choices, the right choices. Clear signs that say, definitively, YES! Stay on this medication or NO! Try a new one. 

I end up with a lot of maybes, and at this point, as you can probably tell, I'm just so freaking unsure of which way to turn. 

Post #101: It's not me, it's you

It it's on candy, it must be true. CANDY DOESN'T LIE.

Dear tiny, tiny doctor: 

Last week, we had a frustrating meeting. You're frustrated, I'm frustrated, my AAC is frustrated. 

Frustration all around. 

I understand that you are human, and as such are entitled to an off day. I know you can't snap your fingers and fix all that is wrong with me; my only requirement is that you keep trying. 

I've encountered this behavior before, from previous doctors. I can recognize the signs: the impatience, the shortness, the annoyance that the treatments aren't working. The bland admonishment to "hang in there and give things a time to work out." 

Ordering test after test after invasive, pointless test. 

Trying to parse and farm out my ailments; telling me you can only treat my gastrointestinal symptoms. 

Telling me you "get it" and that "you're frustrated too."

I'm not so sure that you do get it anymore, and I can guarantee I'm ten times as frustrated by my lack of progress as you'll ever be. At the end of the day, you get to go home, take off your lab coat, and resume your life, free of the digestive complaints you spend your day hearing about. I don't get to clock out at the end of the day. 

I'm tried of "hanging in there."

Deep in my heart, I feel like this treatment is not working. We are running out of viable options. The more pills that don't work, the more tests that are inconclusive, the more side effects and strange symptoms I seem to accumulate, the more you seen to step away. This is not my first time at the rodeo: I know a doctor who is distancing himself when I see one. 

As much as I posture and pretend, I know I don't know it all. I am, however, the expert on my disease. 

When the Prednisone YOU prescribed gives me high blood pressure, don't tell me it could be caused by a preexisting condition. Listen to me when I tell you I've never had a problem with high blood pressure before. Feel free to scroll through my entire medical history to check. I'll give you a minute. 

When I complain about being tired, so fucking tired, don't you DARE tell me it's not related to my Crohn's. How can you possibly know with certainty that "there is no way" the disease is causing this amount of exhaustion?  

Don't tell me that changing my diet won't help. I'm not a moron: I know flax seeds and green smoothies won't cure my disease, but maybe dietary changes could help alleviate some of my symptoms (the dietitian YOU sent me to agrees, by the way). 

You don't know what's going on. I get it. But it's not my fault that my colon isn't being cooperative, and I won't let anyone EVER make me feel to blame me for a disease process that is so obviously out of my control. 

Don't get frustrated with me: take it up with my AAC. 

If all else fails, be honest. Tell me you're not sure what's happening. Tell me you're looking for answers, or consulting with colleagues. I don't require perfection, only compassion. 

You ordered another colonoscopy, my second THIS YEAR, as a last ditch effort to find some answers. As much as I don't want the procedure, I do want clarity. So look for clues in my colon; take some pretty pictures while you're there. 

I hope it can give us some direction. 

In the end, though, I need a doctor who will keep trying. I need a doctor who will stay positive. I need a doctor who will give me hope when I am feeling hopeless. 

If you can't do that anymore, I will find someone who can. 

I'm not giving up on you just yet: don't give up on me either. 

Sincerely,

AAC

Post #90: Spa day!

I have a mani/pedi at 11 followed by a deep tissue massage at noon......
 


JUST KIDDING! Actually, I have a week long dose of steroids (the real kind! non of this corticosteroid bullshit) and an all liquid diet (for the foreseeable future).
 
When I hear "all liquid diet" a few things come to mind:
 
1.) SPRING BREAK BABY
2.) weird diets celebrities go on to lose weight for big events like the Oscars
3.) jaw surgery
4.) fancy spas. Soups! Cucumber water! Beetroot/ginger/kale/worm dropping smoothies! In between mud wraps, detox like you mean it!
5.) fancy-ass yippies who periodically "cleanse" their systems with home delivered organic juices (I'm looking at you, Mistress GOOP)
 
I was going to list nutrisystem (a shake for breakfast, a shake for lunch) but I forgot about the sensible dinner part. Foiled! At any rate, I don't think about Crohn's, and I don't think about drinking diluted apple juice like it's your job in order to stay hydrated. Suprise! Yet another fun facet of the rollercoaster ride that is my Crohn's.
 
When last I posted, I had just returned from the ER, dehydrated, SOBER (the first rule of Crohn's club is ALWAYS TAKE THE PAINKILLERS. wtf), and freaked out. It's almost a week later, and while improving, the symptoms have not fully resolved themselves. No one is really sure what is going on, but in a bid to buy some more time for the new scary injectible medicine to kick in (yes, I took the plunge), my doctor has decided to put me on steroids for a week, have me do the all liquid diet thing, and hope that my AAC calms the F down.
 
The all liquid diet is, I must say, kind of demoralizing. Nothing says "I'm sick!" like eating drinking BROTH. Ugh. Also, side note, store bought broth is foul-tomorrow I'm going to go all Martha Stewart on broth's ass and make it myself (bouquet garni for the win). I am also going to go buy some Ensure. So far I have been eating drinking watered down fruit juice, watered down Gatorade, watered down soup (like tomato soup, nothing fiber-y), and organic protein smoothie things that taste like the chocolate milk I used to get in grade school. I'm not hungry-I'm actually pretty nauseous-and the one thing I want when I'm nauseous are carbs. Crackers and bread. As you may have noticed, these cannot be consumed through a straw.
 
I feel like these major shifts come on suddenly. Last Wednesday-day, I was fine-I enjoyed a lovely turkey sandwich and went about my business. Last Wednesday-night, I was doubled over and sweating through the sheets. These quick deviations from the expected leave little time to do anything but adjust and plod forward.

So that's what I'm doing-plodding forward, distracting myself with Pinterest, and swimming through a sea of liquids. Cocooning myself in my quilt and constantly checking in with my body for any sign of things that are different-good or bad. Watching endless episodes of "Diners, Drive-ins, and Dives" (don't judge me) and wishing, not for the first time, that I could eat 1/10th of the food they present on the show, or eat food in general with 1/10th of the enjoyment and gusto of the people sucking down greasy chili dogs in some Baltimore hole in the wall.

But before I conquer the chili dog (shudder), I first have to conquer the egg, and the saltine, and if I'm feeling wild, the plain pasta. I miss you, solid foods. I can't wait for us to be friends again. 

Post #89: Calm, rational, appropriate

mmmm, fluids.

At 1:30, you wake on the inhale; the pain is so sharp, so sudden, it has literally taken your breath away. In the hazy early morning border between awake and asleep, you consider for a moment the possibility that you are having a very disturbing, realistic dream.

Until you try to move your body.

Unthinking, you tried to flip over and glance at the clock, but the pain in your abdomen is so intense, so deep, that any movement feels like ripping. You are frozen, stuck-your breath is shallow, your body quakes. Your hands shake and your body sweats.

This is a pain you have never felt before. You whimper and consider the objects at hand that you might bang against the wall to attract the attention of your housemate. You are afraid.

In your old car, the one with the leather seats, sometimes during the summer you would forget to put down a towel, and your thighs would stick to the warm hide. This is what it feels like, except with your intestines-pulling and ripping away from something hot and painful, sometimes sticking, pulling and stretching and tearing again with each inhalation. You force yourself to breathe, and unfurl, even as your body wants to curl into itself in agony.

Eventually, slowly, you turn onto your back. And then your side, and then you sit up. Glance at the clock. Realize this is not a dream. Force yourself onto unsteady legs, feeling nauseous and hot and shaky. Go to find help.

The tears come, because in the quiet dawn it is all too much. You call the nurse hot line and the doctor on call. They ask you a barrage of  standard questions. You are asked to rate your pain: 10 when you woke up, 6 now. The fact that you are even calling the nurse hot line at this point is a testament to the lessening of your pain. A half hour ago, you would have had to call 911, because you couldn't have made it down the stairs.

They tell you to "come in." You get dressed, your housemate gets dressed, and you drive into the city in silence. It is dark and the freeway is nearly empty.

You make it to the emergency room and your housemate cruises into the ambulance bay, backs up, parks in police only parking, backs up, and finally parks directly in front of the sliding glass doors, the nose of the car nearly touching the glass. At each turn, the security guards half rise from their seats, ready to enforce parking rules in an empty lot. Up and down, like traffic puppets. You walk in and check yourself in to the ER.

As you wait, a young man harasses the intake nurse, badgering her for information about his girlfriend, who he insists "IS FAMILY" and apparently has a head wound. The same security guards warily circle and observe his behavior and as the nurse calls your name, they have moved in tandem to confront the man. You hear raised voices as they take your vitals in a small vestibule that smells like takeout Thai food.

They take you to a large room and measure your vitals again. You explain your symptoms, again. You've never been in the ER of a large, urban hospital (for yourself, anyway) and it occurs to you, as you shiver on a gurney amidst cabinets of scary looking equipment (gauze, suction hoses and buckets, intubation tubes, something called a cut down kit) that this is where people come when they are shot. You and your aching abdomen feel like ER impostors.

You are prodded and a nurse comes in to insert your IV. You offer up your one good vein, and as she tightens the rubber tourniquet and slaps your skin, you worry about the size of the needle. You already feel like throwing up and your last IV insertion was painful. The nurse sticks you, and you feel the needle thread up your vein....until it stops. The room spins a little. "Come on, come on" the nurse whispers, and keeps pushing. The room spins a little more. You feel a trickle of blood drip down your arm, and the course gauze against your skin and the nurse wipes it away. Wipe wipe wipe. Finally, she's in-you can feel her relax. She tries to take blood, and tightens the rubber band on your arm; it digs into your flesh. She flushes the line and secures it to your skin. You both exhale.

She cheerfully explains that because this is the vein they always use for blood draws, there is some scar tissue she had to "push through." You smile even as the room starts to tilt again, because all of this talk about blood and veins is making you sick.

They offer you some Zofran, which you take, because you don't want to vomit into one of the large teal basins they keep stacked in the cabinet. Another line, crossed-you remember that when your family member was dying, they would give him Zofran after the chemo. Throughout all of your IBS/IBD adventures, you refused to take the "cancer drug"-but your family member is dead, and it's 3 in the morning, and you don't care. The medicine works quickly.

You put a gown on over your yoga pants and are thankful you remembered to wear a sports bra, so you're not waving your boobs all around the ER. You pee in a cup, and wait. You wait for blood results, and you wait. You wait for a pregnancy test so they can send you to CT. All of this waiting makes you feel less guilty for peeing on the floor a little when you filled your cup in the bathroom down the hall, pulling the IV behind you and trying not to pee on your gown. It is an ER after all, and you're sure the floor will see much worse fluids before the shift is over.

The nurses, and doctors, are unfailingly kind. They bring warm blankets and offer you pain meds, which you stupidly decline. Somewhere in the back of your mind, you're afraid that if they offer you the meds, and you take them, then your pain will go away and they will never believe you had it in the first place. You enjoy  not wanting to hurl and absent-mindedly rub small circles over the tender spot on your side.

They tell you there is blood in your urine. Kidney stones?

Finally, they wheel you into CT. The nurse who fetches you is almost courtly in his demeanor; there is something old fashioned and respectful about him. He straightens your blankets and makes sure you are comfortable. As you pass through the corridors, you joke about getting the one gurney with the squeaky wheel, like the one grocery cart with the squeaky wheel, and his laugh is quiet and musical. He offers you a purple gloved hand to help you raise yourself up and leads you to the machine, carefully depositing you and securing your legs against a bolster. He and the tech make small talk.

Someone injects you with dye, and sends you in and out of the giant whirring donut machine as they take detailed pictures of your abdomen. The dye courses through your veins, igniting them, making your lips tingle, making you taste pennies in your mouth. The dye makes you hot, like your entire body is blushing. Your hands, above your head, drip with sweat. When it is over, the tech flushes your IV because the dye is "sticky" and she doesn't want it clogging the line. You think of the dye floating through your body, coating your organs like a sticky BBQ sauce. You wish she could flush it out of your whole body, not just your IV.

You wait for the results. Feeling guilty that you dragged your housemate to the ER, you try to make jokes, but she passes out asleep against the case containing a day's worth of discarded needles. You have a lady nurse, and then a male nurse with old-timey mutton chops. Another male nurse with tattoos on his arms tells you about his service in the military, and how he travelled the world, ticking off the various countries on his finger tips. He is from another state, and says when he is sick he wants his mom more than anyone else. You smile, and he says, "Dudes need their moms more than anyone! In the military, everyone is so hard. You just want your mom. It's like, you're soft, you're my mom, you'll take care of me." Even though you are probably roughly the same age, you immediately want to mother the muscular ex-military nurse and make him a lasagna.

You wait, and feel thankful for the kindness of the nurses and the fact that you have medical insurance. You wonder how much this trip is going to cost you.


There is a shift change, and nurses and doctors flood the hallway outside your room, talking animatedly about dates and patients and motorcycles. Out of the corner of your eye, you see a young woman walk by with a giant bandage on her head, telling the nurse to discharge her to her waiting boyfriend, who you assume is the guy who tangled with security hours before. It feels like a completed ER vignette. She stalks by in high heeled galoshes, even though it is not raining.

You wait.

Five hours after you have first been admitted, a new doctor comes in to tell you the results of all of your testing are unremarkable. Seeing your face, he tries to make you feel better by telling you that 3/4 of cases involving abdominal pain go unresolved. Again, you feel like you have failed ER 101. You are still in pain and there is no reason. There are also no more chances for painkillers. You are discharged, less nauseous but still in pain, with no explanation for your sudden, scary pain.

The sun is up now; you decide to walk over to your gastro's office in the adjoining building and see if you can talk to his nurse. She sees you and says the doctor may want more testing. She describes all the ways Crohn's can make your guts feel like yours feel. On her computer, she scrolls through your test results from the ER, when you see this description:

 

31 yr old female presenting with UQR pain. Calm, rational, appropriate demeanor. Seems mildly distressed.

You rub your side, again. The pain is still there, present with the slightest touch. Calm, rational, and appropriate: the title for your  new memoir. Unfortunately, you feel anything but.

Post #86: A day in the life (of an AAC)

After an exhaustive search, it was determined that I have no candy up my butt.

Oh, colonoscopies. First thing's first-everything is pretty much the same, which is still not normal, but (pending the biopsy results) also not worse. Hooray!? Now, let's make a pro/con list of this most recent procedure:

Pro: The morning of, a friend sent me the following encouragement:

"For tomorrow, because I have no idea what to say before someone goes in for a roto-rooting: [pounds fist against chest then raises it in salute]."

AWESOME.

Con: Prep. Even though the pill prep was less vomit inducing than drinking the "jug of fun" (as a pharmacist called it the other day), it still required swallowing 32 giant salty horse pills and then, you know, cleaning house. And by house I mean colon. And by cleaning....well, you get the picture.  

Pro: It's over!

Con: For whatever reason, they wheeled me into the treatment room 45 minutes early and left me there, giving me ample time to stare at the apparatus that would soon be introduced to my AAC. It is really, really long, and the controls look like a video game joystick. Also, I couldn't really explore the room (extra blankets and emesis basins and extra lube, oh my!) because my "tether" (whatever you call the tube connecting me to the IV) was too short. Not that I tried....

Pro: The nurses there are SO FREAKING NICE. The nurse in the procedure room was joking that I had really come in for a day at the spa, and when I left I would have a spray tan. My doctor joined in: "let me go get the cucumber slices!" I'm not sure what prompted this, or why everyone thought it was funny at the time, but I appreciated the attempt to bust out a little humor pre-butt scope.

AMPs for the win!

Con: This is kind of a big one. For a number of reasons, I wasn't able to be fully sedated for the procedure. I was high, sure, but also aware that there was a pokey foreign object in my colon. I kind of floated in and out, but I remember being uncomfortable and kind of panicked about being awake, but also too drugged to really panic, if that makes sense.
In a last ditch effort, they gave me some benadryl, but the problem wasn't a mosquito bite, but more a giant flexible hose in my AAC. At one point, I must have closed my eyes, and I heard my doctor say, "Oh good, she's finally asleep" to which I replied, "NO ACTUALLY I'M STILL HERE."

Good times!

Pro: Even with the SURPRISE! discussed above, I am still not scared of having a colonoscopy. Nothing truly terrible happened, and I won't be developing a complex over this. The benefits far outweigh the downsides, and awake or not, I'll still have another when I need one.

So-colonoscopy? Check. Follow up appointment scheduled? Check. Back to eating delicious solid foods? Checkcheckcheck. Decision on whether to start the new scary medication? TBD.  

I feel like this was a hurdle (a hurdle I asked for, to be fair) that I had to clear to start off 2013. One way or another, that happened, so now it's on to the next.

Post #79: Thanksgiving (blogging) leftovers

I'm blogging 30 posts in 30 days for National Health Blog Post Month with @wegohealth.

Join me: http://info.wegohealth.com/nhbpm2012 #NHBPM

 

(yeah, about that....)

 

Haha, turkey Fonz. Heyyyyyy.

Awww, sorry neglected blog. I was a little ragey on Wednesday, and then Thanksgiving happened, so now here we are.

 

I cooked a lot of delicious things for Thanksgiving, and then I ate them. That right there is progress, my friends. I started tapering off my steroids this week (sigh), and I was concerned about indulging on Thanksgiving, but I decided I wanted to be a normal person for the day and I ate what I wanted. Today, I was about as sick as I expected, and took a looooooong nap. I'll take it easy for the next couple days, but it was exciting to eat pie. Totally worth it.

 

Now! There are an assload of prompts to catch up with, but I think it counts as sticking with the whole monthly blogging thing if I do a 4-in-1 post, no?

 

Les Prompts:

 

1.) Write about alternative treatments/regiments/medicine. What do you support? What is crazy?

2.) Create a new technology related to health

3.) Write about change

4.) What's something your doctor taught you, or you taught your doctor?

 

LET'S DO THIS.

 

1.) Ok prompt, let's chat. If you call something an "alternative" treatment and then ask what might be "crazy" about it, you're setting up a dichotomy between Naturopathy and Western Medicine that I don't enjoy. Honestly, there are more CRAZY side effects from the prescription drugs I take than from the vitamins and shizz my naturopath gives me. Nothing "alternative" has ever made my hair fall out. I'm just saying.

 

Now, there are some admittedly out there treatments for Crohn's that could be described as alternative-parasitic worms, anyone?-but they're also being studied with increasing frequency by the mainstream scientific community. Conversely, Western Medicine, the non "crazy" one, is doing fecal transplants-let that sink in for a minute-to combat conditions like C. Diff. So, worms or donor poo? I think they might be tied in the wild and wacky "alternative" column.

 

I support care that treats disease and optimizes health with the fewest toxic side effects. I'm not going to make a sweeping generalization about Crohn's patients, but in my case I need mainstream drugs to control my symptoms, and I add on supplements suggested by both my gastro and naturopath (as in, they both tell me to take the same thing. B-12, etc.). 

 

I would also like to note that YEARS before I was diagnosed with Crohn's, a naturopath looked at my blood work and announced, "You have a chronic inflammatory disease that is causing you to continuously lose small amounts of blood. You need to go see a specialist." My primary care, and my gastros for that matter, had all looked at this same lab results, but since the values weren't marked in red, they assured me that everything was in the "normal" range and said that they didn't see evidence of a specific problem. I think the naturopath was able to draw conclusions (the correct conclusion, as it turned out) from the exact same blood work because she looks at the patient's total health, through a holistic AND scientific framework. Did she tell me I had Crohn's? No. Did she listen to my story, consider it carefully, and discover a pattern the other doctors either dismissed or missed? Yup.

 

Bottom line: there are benefits to both traditions, and it isn't fair to write off one as being wacky or "crazy" without trying it out first.

 

 2.) If I were to create a new technology related to Crohn's, I would invent a toilet paper that turned a color if it detected trace amounts of blood. This would be useful, because sometimes you can't really tell (I mean, sometimes you can, ahh). It's important information to know, and the tests currently available to check for it are gross. Ok let's be one with this one.

 

3.) Change......I'm not so good with change. This is a whole post (hell, a whole blog)-not something I can really discuss in a few sentences. Suffice it to say, as I approach my 1 year diagnosis anniversary, it's been on my mind a lot: how much things have changed, how they might continue to change....

 

4.)  Which doctor, prompt? I'll break it down:

 

Current doctor:

-How to be a (better) educated consumer of health information and how not to psych myself out with information overload.

 

Past doctors:

-You know your body best, and it serves no one if you don't share this knowledge.

-Not all doctors have to be your BFF, but if they are disinterested or dismissive they are not going to be the best caretaker of your health. Keep looking until you find someone you can work WITH.

-Write down your questions, because some people (*raising hand*) get flustered/emotional/forgetful during doctor's appointments.

-If you want something, ask for it (and keep asking for it).

-Ultimately, you are in charge of the details. Don't expect your doctor to remember/keep track of them all.

 

Ok! That's enough. There is about a cup of stuffing left, and I need to go take care of that, ha. I hope everyone had a great Thanksgiving and spent quality time with friends, family, and awesome pie.

Post #78: Brought to you by the letter R

R is for RAGE!


Is pharmacy rage a thing? I feel like it is a thing.

I interrupt your regularly scheduled national health month blogging to bring you this special RAGE REPORT. I'm delaying lunch so I relate the following pharmacy conversation. GRRRRR.

Me: (drive up to pick of prescriptions, give name, etc.)
Pharmacy girl (PG): So, did you know that the manufacturer of one of your medications changed?
Me: You're kidding me.
PG: No, it's a different manufacturer now.
Me: No, I get that part. There was this whole thing....I talked to like six people.....there is a problem with the new manufacturer.....there should be a note in my file (anger making me less coherent than usual)
PG: Oh, I see that here. Sorry. Hold on. Well do you want to pick up these pills now and we'll order the other ones next time?
Me: I don't want those pills. I want the other pills. I've been over this before.
PG: Is there a reason?
Me: They make me sick.
PG: Oh, ok. Hold on.

*wait in car*

PG comes back with new bottle in hand. Looks at it, looks at old bottle. Looks at new bottle, looks at old bottle.

PG: So, we only have a few pills from the old manufacturer in stock.
Me: Ok, I'll take those.
PG: So you want to take the new pills?
Me: I WANT THE OLD PILLS.
PG: We don't have enough in stock.
Me: What is the bottle in your hand? Are those the drugs from the old manufacturer? I will take those.
PG: Oh. Ok, we can do that, but there are only 80. Do you want me to fill the difference with the new pills?
Me: (summoning inner peace. failing). I. DO. NOT. WANT. THE. NEW. PILLS. They make me sick. My hair falls out and I get insomnia (consider doing interpretive dance).
PG: Ok, hold on.

*wait in car*

PG: Ok, I can fill part of the prescription now with the old pills.
Me: Great! Ok then. When can you order more?
PG: I don't know.
Me: Could you maybe check?
PG: Ok, hold on. Well, I don't know. Let's see (looks flustered). Just a second....
Me: Do you want me to come back in like 10 minutes so you can figure all of this out?
PG: Do you want to come back?
Me: You tell me (forced grin!). Can you do it now or do you have to talk to the pharmacist?
PG: Ok, come back in 10 minutes.

*wait in parking lot*

PG: Ok, they are back ordered.
Me: What does that mean? Like, will they be available in a few days? A week? A month?
PG: It doesn't say. It just says they are back ordered.
Me: Right, but could you give me a time frame here?
PG: It just says back ordered on the computer. So we can't order them.
Me: Is there another way to find out when they might be available? A number you could call? Could you call around to other pharmacies to see if they have any in stock?
PG: (getting frustrated-THE NERVE): It just says back ordered. We have no way of knowing. You should going to another pharmacy. Hold on, let me get the pharmacist to talk to you.

*wait in car*

PG: Ok, I'll just need a credit card.
Me: I already gave you one, and you already charged it.
PG: (impatiently) No no, that was voided. The manager cancelled the whole thing. It's voided.
Me: Alrighty then. So, what did the pharmacist say?
PG: He has no way of knowing. It just says back ordered on the computer.
Me: I picked up on that.
PG: You know, you're paying the same price whether you pick up 80 pills or 120 pills. Are you sure you don't want me to give you 80 of the old and 40 of the new?
Me: (in my head: am I being punked?!). I don't know how else I can say this. I don't want them.
PG: Ok, hold on. Would you like a pharmacist to talk to you?
Me: (silent)
PG: (ignoring me anyway) Here are your prescriptions. Have a nice day.

*drive away*

Post #57: HULK SMASH

This friendly druggist looks hiiiiiiiiiiiiiiiiigh as a kite.

I haven't had a good old fashioned rant in a while, have I? No? Well then, let's get to it!

I don't hate my pharmacy. The people who work there, in general, have been helpful with problems both mundane (calling my doctor/insurance company a million times to process a new prescription) and sensitive (I have to put the Q-tip where?!). When dealing with any medical personnel, and I include pharmacists/pharmacy techs in this group, I try to observe a basic rule of etiquette:

DON'T BE AN ASSHOLE.

This goes for any human interaction, really, but is especially important in situations where people are performing services that are intended to help you. If you're at the pharmacy, at the counter, don't suddenly forget the hemorrhoid cream and run around looking for it, leaving 5 people waiting behind you. Don't talk loudly on your cell phone while you rifle through your massive purse for your credit card and hold up the line. Don't yell at the pharmacy tech if your doctor is the one who fucked up your prescription. Be patient, say thank you, TURN OFF YOUR CELL PHONE, and don't be an asshole.

All of this is to say: I try to be nice.

Cut to last week, when I went to pick up a prescription and was told the company had switched manufacturers for this particular generic. The thought filled me with dread. Yes, chemically, the drugs will be the same. But a pill is not made up of chemicals alone-there are also fillers. Seriously, check your bottle of Advil. It doesn't just say "Advil" on the list of ingredients; the pill itself, the coating, the color-these are all additives. So, technically, two generic pills might have the same chemical components, but different fillers.

Example time! Let's say Giant Drug Manufacturer A uses ground up mice penises as a filler, and Giant Drug Manufacturer B uses freeze dried bat turds. Your body may tolerate mice wangs better than guano. The chemical component of the drugs is the same, but the fillers might be different. I don't care how many pharmacists tell me this, but that means it is NOT THE SAME PILL. Unless both pills contain the exact same chemical ingredients AND the same fillers, they are.not.the.same. They are not pill twins-they are more like pill step brothers. End rant #1.

When I got the new drugs from the new manufacturer, I tried to keep an open mind. Sure, my body had adjusted to mice, but who's to say it couldn't embrace bats? I tried it out for about a week. My sleep got jacked up (who wants to wake up every 2-3 hours? Not this girl) and my hair started falling out (again). I was jittery and irritable and pissed off. Do you know why a company switches manufacturers? Because they get a cheaper deal with the new manufacturer. This makes hulk ANGRY.

So I called the pharmacy to see if they had some of the drug from the old manufacturer laying around. "No problem, we can just order it straight from them. From now on, just remind us to special order it from the old manufacturer." Let's break this down pharmacy (Hammer time!): to try to save money, you switched my drugs around and made me sick. Now, you will be forced to special order me the old medication, therefore costing you more money. HOW DOES THIS MAKE SENSE!?

I called my doctor to get a new prescription, and immediately stopped taking the new generic drug. Hey, guess what happened? Sleep returned, and my hair stopped falling out. Since I need to be on this drug, but didn't want to take the new craptastic generic, I called the pharmacy everyday to see when the old drug was in stock. This lasted a week. Finally, I had the following conversations:
 
ME: (see above-explained it to the tech)
Tech #1: Hmmm. Let me check on that.
Tech #2: Hello? How can I help you?
ME: Explained EVERYTHING all over again.
Tech #2: Hmmm, let me check on that.
Tech #1 again: Ok, I see you have enough of that medicine to last you another few weeks. What can we help you with?
ME: MEDICINE MAKE ME SICK. BLERGGGGGGGG. NEED OLD MEDICINE.
Tech #1: Ok, let me check on that.
 
(This was the moment when I stopped playing solitaire to focus on my rage.)
 
Pharmacist: Hello, how can I help you?
Me (actual words): ARE YOU SERIOUS? I AM GOING TO LOSE MY SHIT.
Pharmacist, after I had explained the whole thing again: Ok, I am going to need to get approval from your insurance company to refill this prescription. I"m not sure if they will approve it, they usually don't when people just prefer one generic over the other.

 
(this was the moment when shit was lost)
 
Me: Prefer?? PREFER?! This is not a question of preference, the new generic makes me SICK. I PREFER not to be sick.

Pharmacist: So the old generic didn't cause these symptoms?
Me: NO.
Pharmacist: Oh, well that's different.
 
(shit is lost into the stratosphere)
 
Um, more things were said, and it was a 15 minute "conversation" with at least 3 different pharmacy personnel. Look, it sucks being sick and needing a million different pills to keep your colon in check. What I don't need is attitude from a pharmacist who thinks I would waste my time making a fuss because my prescription is a different color. But I PREFER pink! It matches my decor! Riiiight. Nothing condescending or invalidating about that!
 
So thanks, pharmacist, for assuming I'm not the ultimate expert on how a medicine makes my body feel, and for doubting my judgement. One of my favorite past times is randomly calling pharmacies with complex medication issues and seeing how long I can keep various staff members on the line, working on my conundrum! Some people collect stamps, but I really feel like the maddening exchange with your staff is ultimately more satisfying.
 
End rant. Enter soy ice cream, spoon, stress eating, and angry muttering.

Post #53: Truth in advertising

My colon is working again-time to buy flowers! It's a RULE.
 

So tonight, as usual, I was delaying taking my evening meds. I got a snack (can't take them on an empty stomach), did some laundry, and painted my nails a dark forest green. I mostly bought the polish because it had one of the most hilarious names I've ever seen-and you have to say this in a loud, angry German accent:

NEIN! NEIN! NIEN! OK, FINE!

Ahahaha. I don't know why that makes me laugh, but it's all I can do not to blurt it out at inappropriate times.

Me: I'd like a Sprite.
Waitress: Is Sierra Mist ok?
Me: NEIN! NEIN! NIEN! OK, FINE!

I would have to tip her really well.

I was admiring my nails as I shook out two pills from the bottle, and  for a second I just looked at them sitting in my palm, pale yellow against my skin, juxtaposed against the velvety green on my fingers, and I thought, this looks like a drug ad! It's so perfectly composed. Staged. Innocuous.

I should say that I freaking hate pharmaceutical commercials on TV. My hatred for all drug ads connected to raising old man peen are well documented, but what really gets me are the ones targeted to women. They usually start out with sad face lady-wah, I'm sick, I'm sad and alone in my house. Then they break out the 3 F's-food, flowers, and friends. Seriously, check it out next time.

As the voice over guy lists all of the horrible potential side effects, the lady-now happy and smiling-shops for flowers (why is it always flowers? Is that just what healthy people with vaginas do?), has lunch with the girls, maybe does some light painting. You know, lady stuff. Here's how it goes:

Voice over guy: potentially serious side effects include loss of sphincter control, intermittent dry heaving, and werewolf style hair growth. Other serious side effects include runny nose, fatty spleen, and increased bleeding from the ears. Though rare, there have been reports of finger loss and nostril enlargement. If you feel an increased appetite for cruciferous vegetables or notice a change in sexual appetite, contact your doctor immediately. Your doctor will discuss the risks and benefits of using this drug.

Happy drug taking lady: silently laughing in the background at a sidewalk cafe with her friends. Subtext: Oh Carol, you slay me! I'm so happy I took this drug and can hang out with the girls. I'm not bothered by the finger loss at all! Who wants another appletini?!

Ugh ugh ugh.

Here's how it should go:

Voice over guy: People, this drug is pretty toxic. I'm not going to lie, the first few weeks are not going to be cute. Do not take this medicine if you will not be near a bathroom at all times. Do not take this medicine if you are squeamish, sleep deprived, or malnourished, because SHIT IS GOING TO GO DOWN. People have reported all kinds of crazy side effects, but if I were you, I would be most worried about the finger loss and the sphincter control. Seriously people, we're talking about LOSING DIGITS and POOP. Are you really prepared for that? Your lady friends are probably not going to want to hang out with you and go flower shopping, I'm just saying. Talk to your doctor. Make sure you know what you're getting yourself into. Seriously.

Drug taking lady, probably not happy: silently clutching her stomach with one hand while trying to contain her bile with the other. Looking in the direction of the rest room. Dark circles under eyes. Trying to smile. Realistic subtext: Oh Carol, blargahhhhh (vomiting into her purse). Sorry about that! You're a funny gal! This is so fun!!! *plop* Oops! There goes my pinkie into your appletini, let me order you another. You know what? Hanging out with you girls has been fun, but I think I'm going to go home and watch Netflix. Don't want my spleen getting fatty again! I'll call you crazy kids in a month or two.

Obviously, I'm over dramatizing, but I would much prefer the truthful commercial. Granted, no one would ever take drugs, but then I wouldn't feel like such a whiner when I get concerned about taking yet another new one. The ads say: stop worrying! This will make you better! Everyone else is getting better, what's wrong with you?! DON'T YOU WANT TO GO FLOWER SHOPPING?! While my body is saying: I don't feel right. I feel like I have a fever, and my stomach hurts, and I'm dizzy. I just want to lay in bed until this stupid drug kicks in and I can carry on with my life, let alone go shopping for tulips and engage in some light painting.

I would feel better, and less alone, if the people in these ads were sick, or scared, or conflicted. If they looked and acted a little more like they had actual medical problems. If they treated the drugs like drugs, instead of glorified miracle Advil.

Instead, they are shiny and happy and carefree, and I worry that a lot of people will buy into the dream, and feel like a failure when they don't live up to the promise in the ad. I know that's what happens to me.