Post #113: SSDD

It's less offensive with a floral background. 

Welcome to the story of my life: same shit, different day. And I don't mean that literally, of course, because we all know my bowel movements aren't nearly that predictable. 

Last week, I fell asleep on the couch, nbd, when I woke with an alarming, stabbing, tearing, searing pain in my side. Last time this happened, almost a year ago, I was so alarmed that I went to the ER-I had never experienced pain like that before, and it scared the hell out of me. I thought something was torn or twisted or ruptured, and I was both relieved and frustrated when the doctor on call shrugged his shoulders and I walked out of the hospital with a clean CT and no answers. This time, same pain, but you know what? 

Same shit, different day. 

I was alone, and the phone was out of reach, but I calmly told myself to breath through the pain. Some insipid morning talk show was on, and I tried to listen to distract myself while feeling like someone was shivving me in the intestines (can you use that as a verb? As in, "to shiv?" I'm not down on my prison grammar). When the pain lessened a little, I slowly rolled onto my back, then onto my other side, and then sat up. The pain got better. I called the nurse out of habit, but I had no intention of going to the ER. I didn't expect her to have any insight into the problem, and she didn't, and I had already resigned myself to welcoming back my old friend, le liquid diet. 

Same shit, different day. 

That first sip of protein smoothie tasted like sweet, sweet defeat. 

The recovery from this....whatever it was (the doctors don't know either! wheeee) is going more quickly this time, and I've been adding one or two solid foods a day, waiting to see how my AAC will react to the softest, blandest, safest foods imaginable, dealing with the nausea and pain and discomfort that inevitably comes after eating something innocuous (like eggs). Nervously trying new foods, hoping not to wake up in pain or obstruct. 

Sound familiar? Because that's a big, heaping helping of same shit, different day. 

I went back to see my old doctor, and we made up a little-I didn't cry, we traded circumcision jokes, it was all good-but he had no idea what was causing my pain, and little advice about how to proceed. 

You know where to find that book in the library? It's filed under same shit, different day. 

I'm now waiting for insurance to approve the next test that might give me some answers, the one the new doctor ordered. I saw him a month ago, he submitted the claim, something went wrong, it was resubmitted, and now it will probably (best case scenario) take at least another two weeks to approve.

You know how to get there? You just merge onto the freeway, and take the same shit, different day exit. 

Oh, and this test? I have to swallow a tiny camera, which may or may not get stuck in my AAC. It has a 5% chance of requiring additional intervention/emergency surgery, and I have to prep like I'm having an actual colonoscopy. My doctor actually said it wouldn't be such a bad thing if it got stuck, because then they would know where the problem was. 

Hmmm, this room is a little musty. Maybe I'll light my same day, different shit candle. 

So here I am, back to where I was a year ago (minus the steroids, thankfully). I'm uncomfortable, stressed out, and waiting for a test that may or may not yield any useful information, but which will surely be a pain in the ass (literally and figuratively) to go through. Insurance is being difficult, I'm playing phone tag with doctors old and new, and I obsess and worry over what I eat, which makes mealtimes AWESOME. I wait for pain, and I wait for tests, and I wait for answers. I sleep a lot, and the days pass, and I try to find happiness in small things. Every day I turn into myself a little more, and reach out a little less. 

You all know the chorus: SAME DAY, DIFFERENT SHIT. 

I want a new song. 

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 #70: I never call BS on ranting

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

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

 

Won't you come join me? Pull up a chair, plenty of room.

 

Le Prompt: Call BS on something. What's something that is just ridiculous?

Well what do we have here? Another prompt that requires RANTING? OK!

 

 

I think this list requires a rating system; let's say 1-5 pooping cows. Obviously, the more pooping cows, the more bullshit. To the list!

 

5 Cows: Plug your nose holes

 

Doctors who say they can "fix" or "cure you

I was trying to figure out where my extreme distrust of gastroenterologists came from, and one of the reasons that I came up with is that pre-diagnosis, in the IBS days, 95% of the doctors I visited, be they gastros, internists, or even naturopaths, assured me they knew what was wrong and they knew exactly how to fix it. They had ideas, and plans, and a confident air of expertise. They all failed.

 

Maybe I wouldn't have raised my hopes so high if they hadn't been so sure of their ability to correctly diagnose and treat my problem, but every time I was left in a deeper and darker hole than when I started. One gastro, after prescribing 4-5 medications (bear bile, anyone?) finally looked away from the computer screen, propped his elbows on his knees, and said, "Well, I'm out of ideas." So what should I do next? "Maybe go see a different gastroenterologist." Thanks! And the saga continued.

 

Now, I don't think any of these doctors would have fed me the same lines if I had a Crohn's diagnosis-they're not quacks. But one of the reasons I like my current doctor is that he has never claimed to have all of the answers. He said in our first meeting that treating Crohn's is an ongoing process, and it would probably take some time to find the right medication combination that would give me the best symptom control. And that has always been the goal: symptom control, remission, quality of life: actual potential positive outcomes with this disease.

 

I'm still working hard to trust him, even though he has never tried to sell me a promise I know, deep down, to be false. It is, like the Crohn's, an ongoing process.

 

4 Cows: Grab a shovel!

 

Medication side effects that are worse than the actual disease

For serious. In the early days of taking one medication, I had this actual thought:

 

Untreated Crohn's is preferable to this drug.

 

Let that sink in. Crohn's is bad enough, but add in a laundry list of super fun side effects and the party JUST KEEPS ROCKING. Now, nausea and diarrhea (ironic, no?) are one thing, but then add in the really scary potential side effects: lymphoma, heart failure, fatal infections.....it's enough to make you want to crawl under a rock and suck your thumb. Beyond worrying about cancer or catching pneumonia, there is the great known/unknown conundrum. I know how crappy I feel with untreated (and, sometimes, treated) Crohn's-how exactly, and in what ways, will I suffer with new medications A, B, or C? It's never an easy decision to decide to cast your hopes on a medication that will potentially (and in my experience, frequently) make you feel worse than when you started, hurting you as it's "helping" your disease.

 

3 Cows: Fertilize those flower beds!

 

Colonoscopies

In the world of Crohn's, you'll hear this a lot: colonoscopies are the GOLD STANDARD of diagnosing and monitoring the disease. It's the best way to know what is going on up in your digestive business; sure, an MRI can show inflammation or strictures or obstructions, but nothing beats getting up close and personal with your mucosal lining with a camera attached to a giant hose. Here's the deal: WHY HASN'T ANYONE FIGURED OUT A BETTER WAY TO DO THIS?! Yes, there are those little pill cameras you can swallow, but it's not the same.

 

Dear science: first, focus on the cure for Crohn's thing, that's muy importante. And while you're doing that, I guess find better Crohn's treatments with fewer side effects and less toxicity. But if you have time, and want an extra credit project, can you work on creating a less invasive test to scope out my AAC? Maybe a "Magic School Bus" style shrinking ray for my doctor and a tiny colon submarine? Thanks.

 

2 Cows: Collect those Rocky Mountain oysters!

 

Insurance

Having to worry about getting and maintaining coverage if you have a pre-existing condition?  Let's work on that.

 

1 Cow: Mooooooooo

 

Fatigue.

I really, reallllllly have to call BS on Fatigue. I know it's a symptom of my disease, and actually of some of my meds, but I would like to get through the day without having to take a nap. I would like to, say, attend a yoga class (where I worry about colon explosions a lot of the time, btw) and know that I have enough energy to complete the class AND stay awake for more than an hour after it. It's frustrating to only have energy in fits and starts.

 

All of the things on this list are bullshit worthy. You know what is NOT bullshit worthy? The fact that this is my 70th post. Holy crap. Through flares, brief periods of remission, colon explosions, new meds, old meds, and now a month of daily blogging, my ass (and my AAC) has been writing post after post. Thanks for reading about the goings on in my colon, and I hope your own AACs aren't angry at all.

Post #64: A little gentle ranting

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

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

AWESOME.

Today's prompt: Health advocate soapbox.

I don't really consider myself a health advocate (except for myself), but I do enjoy a rant! On this blog, off the top of my head, I have ranted about:

1.) generic drugs and infuriating pharmacy staff
2.) annoying drug ads on TV
3.) the Charmin bears (ugh)
4.) People's offensive reactions to and suggestions about my AAC
5.) one particular asshole naturopath

I'm sure there are many more delightful rants in the annals of this blog....feel free to find them. Like an angry angry scavenger hunt!

Today, however, I went to yoga and I'm completely wiped out (a combination of tired/calm), so I don't know if I can muster a really good, cleansing rant. I think instead I'll make a list of health related things that piss me off or make my life more difficult.

1.) Gentle Rant 1: Naturopaths and Gastroenterologists
In all fairness, I'm a skeptical person-I'm pretty firmly on team western medicine. That said, I think there is value in looking to alternative sources to complement traditional treatments and enhance overall health. I wish that naturopaths and gastros could work together to find some kind of common ground and create some sort of hybrid, holistic approach to dealing with Crohn's. I have yet to meet a gastro who embraces the benefits of a naturpathic perspective, and I feel like there is a lot of secret (and not so secret) eye-rolling happening from both parties. I've been to a few naturopaths, and a few (ok, more than a few) gastros, and many subscribe to a pretty entrenched "us vs. them" philosophy of treating illness. This is stupid.

Nowhere is the divide more apparent than diet. My current gastro doesn't focus on diet as a contributing factor to Crohn's symptoms and flares, but all of the naturopaths I've seen have focused on diet as a contributing to factor to health and well being in general. Again, I'm not sure that eliminating food groups a, b, and c from my diet could put me into remission, but what if it made me feel better? I would love for my doctor and naturopath (not the asshole one) to sit down and hammer things out for me: eating these foods will help reduce inflammation. Avoiding these foods might help prevent gas/increase absorption/decrease motility. This supplement will help alleviate some of the side effects from that drug/give you more energy/help you sleep. A combo approach to Crohn's-I'll take whatever help I can get. You know how when two family members are fighting, and you just want to lock them in a dark closet until they figure out their problems? That's what I want to do for these two. Get together, talk, eat some quinoa, hug it out. I think it would benefit both practitioners and all of their patients.

Gentle Rant 2: GO VOTE

I'm working up a little steam with this one.....check out the picture above. You know what DOES make me ranty? Conservative men making decisions about my health care options. You know what else makes me ANGRY? The fact that we don't have universal health care in this country. Finally (stepping up onto soapbox), let's talk a little about pre-existing conditions (I have one!). Due to a computer glitch, I didn't have health insurance for a few months this summer (I never knew-was never notified-I only found out three months later when I tried to pick up a prescription and found out I suddenly had no coverage). Since I have Crohn's, it would have been extremely difficult, if not impossible, to find other coverage. Do you know what it feels like to have, even for a second, your health care snatched away? Do you know how much money an MRI costs? A month's worth of steroids? A freaking colonoscopy?

No one should be penalized for having a disease.

If for not other reason (and there are SO MANY OTHER REASONS), vote for people who want to insure the uninsured, and prevent discrimination based on pre-existing conditions. Vote for people who want you to be allowed to have control over your own body and make your own health care choices. Vote-just vote.

Gentle Rant 3: Test Results

I think I'll end on a positive note. When you undergo as much testing as I do, it can be incredibly frustrating to have to hunt down your doctor/nurse to get your test results. In the past, I felt like I was harassing them with my multiple calls and messages, but when you're waiting on important test results you get a wee bit impatient. In the past few months, I've been getting weekly/bi-weekly blood draws, and while these aren't as nerve wracking as tests in the past (will this be the blood test/procedure that finally figures out what's wrong with me?!) my doctor (well, his nurse probably) sends me a copy of my results with the his notes a few days after each one. I didn't ask him to do this-maybe it's just how he does things. It's awesome. It helps me stay updated about my health and aware of what's going on with my body. I feel more empowered when I go to appointments, and I feel like I have more information when I'm making decisions about my health. Such a simple thing that has such a big impact.


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 #35: A comprehensive report, from top to bottom

Calm it down Sonicare-trust me when I say you're on the right end of things.

Before I discuss my butt, let's first list some things that make me feel old:

1.) The fact that Tia and Tamara Mowry (Sister Sister? anyone? anyone?) just turned 34 (thanks waiting room copy of People magazine!)

2.) The fact that on random employment forms, it's not out of the realm of possibility that I might have dependents

3.) And finally, the fact that I am officially being inducted into the old lady hall of fame with the BRAND NEW night guard I will be getting next month! It's going to be thuper thexy (that's how I'll be talking at night from now on).

So I went to the dentist today for the first time in.....a while. My old dentist retired, I hadn't found a new one, nothing was loose or newly crooked or turning grey-I figured everything was probably fine in molar land. I put it off, and like many things that are put off, it grew in my imagination into something that seemed bigger and scarier than it actually was. All of this other shit was going wrong in my body-did I mention the nose pap smear? Or the antibiotic ointment that I'm supposed to shove up my nose holes twice a day with a q-tip? No? Well there's that. And the diseased colon. And really, that was enough. But human bodies, and especially female human bodies, require routine maintenance. Deferring these appointments merely leads to a stressful appointment pile-up, and I'm trying to take better care of my entire body to create a more hospitable living environment for my AAC. Doing sick person math, I figure that if I stay on top of my other shit, this equals more time/energy to deal with the disease at hand.

My old dentist was like a stern father figure; picture sweater vests and a bad Bill Gates haircut. This new dentist looks like a shiny Nordstrom's shoe salesman with several advanced dental degrees. He's so....coiffed. And he's Brazilian! Everything he says, with his hint of an accent, sounds slightly celebratory. He has blindingly white, perfect teeth, an above average handshake, and a general air of confidence. I think I will trust him to jab needles into my gums (next week actually, when he fills that tinnnnnny cavity that is TOTALLY NOT MY FAULT).

Where was I going with this? Oh right, old lady night guards. I remember when I was growing up, I took great pride in the fact that I was the only one in my family without that particular plastic horseshoe. I also used to wait until bedtime to ask my parents pertinent questions, so I could watch them spit all over themselves. It's the little things, really.

So while there are some smooth spots on my teeth where I have done some grinding (not the sexy club kind), Brazilian dentist assures me that this is not an unusual wear pattern for SOMEONE MY AGE (oh Brazilian dentist, don't you see I'm YOUNG AT HEART?!). So unlike most of my family, I am really a predominant clencher rather than grinder. This can be stress related (the hygienist asked, is there anything particularly stressful happening right now? hahahaha), but in my case I think I was probably a clencher from the moment I got teeth. Since when I wake up my jaw often hurts (there is no way for that to not sound dirty, I'm sorry), and I have pain in my neck and shoulders, and my jaw kept popping in an alarming way during the exam, Brazilian dentist advised getting a bite plate as insurance against further damage to my joints. A few posts ago, I talked about stress manifesting itself in physical ways, and now I have proof! Sigh. With the exam, x-rays, tinnnnnnny cavity filling, and bite plate, I'm looking at $1,000 worth of dental work. Did I mention that I don't have dental insurance? It's a good thing I'm getting that bite plate, because I think I'm clenching now.

So, my teeth are somewhat sorted out, but my AAC is decidedly not. This has not been a great week in terms of colon explosions, and it's kind of feeling like the old days. Cramps are back. Bloating is back. Sometimes pain is back. And hello there noxious gas! These are not good signs. I feel like I'm backsliding down a sandy slope, and there's nothing I can hold onto, nothing I can do. I have 8 days left to taper, and then my AAC and I are on our own, and I'm not sure we can hold down the fort by ourselves. I see my doctor in about 3 weeks, so I'll have a week or two where I'm au natural, drug wise. This morning, after racing to the bathroom, I was so exhausted that I had to take a nap. I'm not sure what the biological basis for this is, but sometimes after my colon completely empties itself it feels like my body is so spent from the process that I have to set the reset button, sleep it off, and try to start the day again. It definitely feels like defeat to have to crawl back into bed at 10:30 instead of watching the View like a normal person.

Post #21: My colon is a WILD HORSE ON THE RANGE

Mostly I wish I don't have to poop again in the next 10 minutes. I should set my sights higher. WORLD PEACE!

Today is kind of a hard day, the anniversary of a death of a family member. It's been a long time, but sometimes the wound still feel fresh.

But let's talk about my colon! Because that's what this blog is all about, no? Today my colon is displeased with.....something. I'm tired and still fighting off this cold (I guess that's what happens when your immune system is busy ATTACKING YOUR HEALTHY TISSUE). I'm going to taper again next week, and I'm stressed out about that. I have the sneaking suspicion that following the last taper my doctor will want another colonoscopy (it's been 6 months since the first one that started this whole Crohn's party). I'm still paying off the festival of invasive testing that happened in Jan/Feb. I start work again in September, so I feel like there's a timeline to this whole process, which is pressure I don't need.

I read through the paperwork that the insurance company sent me, and the thing they want me to enroll in is called the "Rare Disease Condition Management Program." I didn't think Crohn's was that rare, but whatever. Apparently, they assign you a special nurse who coordinates with your doctor to help you "manage" your super special disease. I don't feel like I need another voice (especially one who is tied to my insurance company) involved in my medical decision making process, so I think I will decline. There is something about the term "management" that pisses me off (prepare for a rant!). Management is what you do when you are a mid-level executive at a company that produces ball point pens. It is not something you do for my colon, which like a wild horse, is a wily and unpredictable creature. You can't shove my horse colon in a simple box and stamp it "managed." I feel like that metaphor went awry at some point, but I think you get the picture.

I'll ask my doctor about it when I go in for my next visit.

In other news, people keep asking me to babysit things for them (people, houses, dogs, small rodents) while they go on vacation. This is depressing because they assume, correctly, that I will be around to watch their business while they galavant about the country (ok, visiting Michigan is not that exciting, but it's still different than HERE). I think I might have another gig lined up for next weekend. sigh.

I am going to run to the bathroom (again) and get ready for a hair appointment. I'm going to change my hair color in an attempt to perk myself up. This week my AAC (and my cold, and some other random medical shizz) has kind of steamrolled me and pushed out all of my energy and give-a-shit. Maybe a new hair color will give me back some much needed attitude.

Post #20!

I don't know about the calm part.....

My 20th post! I am being so consistent with this whole blog thing. And, if you've been following along with the rest of the class, consistency is what I need.

I've had trouble finding my rhythm this week. I had two non-Crohn's related doctor's appointments, with their attending stresses; to sum it up, I basically got a nose pap smear, but with slightly less scraping. FUN TIMES. Also, and this is a random tangent, but I was at a dinner party last week where the subject (after a lot of imported plantain gin) turned to male/female parking habits and the male need to "angle in" (or back up into) a parking spot to show off their parking prowess. Being a mediocre parker in the best of circumstances, I've never felt the need to increase my likelihood of hitting other vehicles or ramming my car into random obstacles I can't see in the rear view so that my getaway is FIVE SECONDS FASTER, but at this particular medical facility I spent TEN MINUTES waiting for various males to back their over sized SUV's (and in one case, a seriously gigantic caddy) into tiny compact spots while the rest of us waiting to pass and avail ourselves of the DOZENS of available spots around the corner. Ugh.

Moving on, back to my discombobulated week. What really gets me is the eating-I'll try to stick to a boring, healthy regimen, and then I'll get lulled into a false sense of security and, oh, eat an entire basket of chips (with salsa!) at the mall. That day, I'll feel great! My colon will be pleased! Two days later and it all falls to pieces and I spend the day on the toilet. I just don't get it.
I'm still getting over the cold/flu I had last week, and in combination with the colon drama I feel tired and drained. And bloated. And a little nauseous. And cranky.

Today I got something in the mail from my insurance company that scares the crap out of me (like I needed help in that department). I haven't read the particulars, but basically the note was like, hey! we noticed you had Crohn's! Why not enroll in our new Chronic Condition All Stars Program?! We have special nurses just for you sickies! We'll coordinate with your doctor! It will be awesome! Now fill out these 10 forms and let's take a moonlit stroll down the beach *kiss*

Now, far be it from me to suggest that the insurance company has anything less than altruistic motives in grouping the chronically ill into a group and monitoring (micro-monitoring? Did I just make up a word?) their progress, but the whole thing seems creepy and intrusive. Besides the depressing fact that Crohn's is grouped with other diseases like diabetes, Alzheimer's, and Parkinson's, this whole venture, with its shiny informative brochures, seems suspicious. It seems like a way to focus in on these specific diseases and gather information, information that could later be used to deny coverage for specific procedures or validate insurance adjuster interference in the treatment process. I don't know, as I said I haven't read the fine print, but a lot of the questions are super, super specific:

1.) In the last six months, has your condition improved? worsened? Has your colon fallen out?
2.) Rate your overall health: excellent, poor, superman, average

Really, insurance company? Do you really need to be all up in my business? If you really wanted to know, couldn't you just look back through my claims? Do I have to make it easier for you to categorize my health for your unknown purposes?!

Suspicious.

I don't think I will be participating in this little pilot program.

I know that they know that I have Crohn's-it's not something I can keep secret. But being hit over the head with this knowledge was disconcerting. After I read the letter, I curled up in bed with a book, feeling sick, and tried to forget for a while.

Post the third! (has nothing to do with cows)

Haha, cow butt. Thanks google!

Do you know what's hard to have when your head is permanently shoved up your ass, worrying about.......your ass? PERSPECTIVE. Today was a day of little reminders that I am lucky, in so many ways, in terms of my health. First, I have a support system. I came home to a message from someone just "checking in" to make sure I was still kicking. It was low key, just "call if you need anything," but it was very comforting. I have people.

Second, I have health insurance. Granted, my entire tax refund check is going to fund a colonoscopy that I had 4 months ago, but I'm still paying about 1/4 of the total amount. The steroids that I'm on right now? According to the printout from the pharmacy, they cost over a thousand dollars. PER MONTH. I have a ten dollar co-pay. Every time I pick up a new med, I think, how do people without jobs or insurance or savings pay for this? Thank you, insurance. If everyone were "forced" to buy you, more people would have access to the aforementioned expensive drugs! But that's another post:)

I was at B&N and ran into a co-worker in the parking lot. She was holding the tiny, chubby hands of her toddler high above his head as he lurched towards the store, taking giant unsteady steps. I stopped to say hello, and she introduced me to her parents; her father didn't have the use of his right hand, and while I aborted my handshake into an awkward wave he was fixated on his grandson's progress, his face both sad and proud. At the grocery store, a woman with a limp navigated around the bread shelves in the deli, pushing forward to get a free sample, and then another. An elderly man took excruciatingly slow steps to the exit, and as I darted around him to hurry to my car I saw his wife waiting on the corner, holding out her hand. He helped her to their car. He was the steady one.

People went about their lives with their imperfect bodies.

I am often annoyed that people cannot see my illness, and so in a way it doesn't exist for them. When I meet up with a friend, I hear, "You look great! You're lost weight!" and while that's nice to hear (I guess?) it seems to me the unspoken thought that accompanies that statement is "so you can't possibly be that sick!" Yes, I'm overly sensitive. Yes, it's easier to nitpick the trivial comments of others and deflect my anger onto the people and words that really have nothing to do with my condition. Yes, the steroids make me (more) emotional. But sometimes I just want to wear a t-shirt that says, "I spent the morning on the toilet and I'm tired and I feel like someone sucked all of the energy from my body with a giant straw so could you please cut me some slack?"

And then comes a day like today, where I see people all around me living their lives and interacting with people without the aid of a non-catchy semi-horrifying t-shirt. I guess I do the same, and in some ways I blend in as "normal" even if I feel anything but. It's a kind of invisibility that can be lonely. But for now, for today, I am going to try to focus on the lucky part, and to wedge my head out of my AAC.