Post #95: Meerkatin' it up

These meerkats are perfectly expressing both my general attitude and  "I have a pain in my colon"  position. 

Here's the thing about Crohn's: you can be having a perfectly normal  (well, "normal") day and suddenly, at 3am, your AAC oh-so-politely interrupts a perfectly sound sleep to express its displeasure. It's kind of how my mom used to wake me up for school. Most moms might slip into the room quietly, sit down on the bed, perhaps lovingly caress your hair and whisper, "time to wake up and greet the new day,  my most perfect treasure!"

My mom would turn on the lights and grab my ankle. Let me tell you, it's disorienting to go from sound sleep to full light and someone tugging on your leg. This is why I got an alarm clock in the 4th grade. This is also how my AAC wakes me up at night: not with a slow dawning of pain, a courteous twinge or two, but a full on onslaught of sensation. Asleep, then awake: not in pain, then in pain. 

I'm back on the full dose of steroids (yeahhh! but really, not yeah), and I should be eating f-ing real food by now, but instead I was thwarted by some lactose-free tapioca pudding WTF. I calculated, and I haven't had a "normal" meal in 23 days. If I'm using a lot of the word normal in quotation marks, it's because the definition of normal is constantly changing. It's stressful. And at 3am, when you are woken and surprised by pain you were not expecting, it's hard not to wish for the "normal" you had yesterday, which could still be crappy, but at least was not as painful. 

Anyway. 

I feel like I am having some emotional constipation about this most recent episode, about the stress and the pain and the uncertainty, and I think some of that can be chalked up to fatigue. But one emotion I can reliably access is my old friend annoyance: that's right, it's time for another round of "stupid shit people say about my AAC!" Because there's nothing like dwelling on the stupid shit other people say to deflect attention from you own emotional state (#avoidance). 

Person 1
I go to visit a friend who knows all the gory details of my AAC. I explain the situation to her. She looks miffed. 

Me: Why do you look pissed off? 
P1: I just think......I think they should be doing more for you. 
Me: Who? My doctor? I think he's doing pretty much everything he can. 
P1: Well, I don't. They should be helping you more. Like, with your diet. 
Me: Uhhh, I'm pretty much doing the broth thing. There's not much to work with. 
P1: Well, exactly! I can't believe there isn't more you could be doing to help heal yourself and make yourself feel better. 
Me: Food makes me feel sick. I'm not sure now is the time to be trying new diets. Plus, you know, doctors aren't into the whole "diet affects health" thing. 
P1: EXACTLY! How stupid is that?! (I don't totally disagree with her, btw). How could what you put in your body not affect the way you feel? It makes no sense. 
Me: Well, now is not the time for a drastic change. I will stick with my broth and hope nothing gets stuck in my business. 
P1: I just think it's been going on for too long, and there must be something you can do to make yourself feel better. 

Subtext: YOU ARE DOING CROHN'S WRONG. Obviously, the foods that you are eating, the ONLY ONES YOU CAN TOLERATE WITHOUT PAIN, are incorrect. Because I am currently trying this green juice recipe I heard on the radio, I am a nutritional expert. 

Person 2: 
Called to check in on me; I provided an update. 

P2: You're still on a liquid diet?! I don't think I could handle that. I mean, not to be able to eat solid foods? I think I would JUST DIE. 
Me: Uhhh, well....ok. I mean it's not like I have a choice about what I'm eating-I'm just trying to avoid pain. 
P2: But still, no solid foods? For almost a month? I don't know how you do it. I would just DIE. 

(thinking is my head: WELL OK WHY NOT JUST GO DO THAT THEN). 

Subtext: Your life SUCKS. What I really wanted to say was this: pretend that everyday, you had to poop out a lime. Like, push it out your entire digestive system. That would hurt just a tidge, no? Now let's say you could just drink the juice instead while your digestive system heals. Lady, you would be drinking that shit by the gallon and not be pining over a Big Mac. For serious). 

Person 3,4,5: I've hard this variation like two or three times this week. Here's one of the actual conversations: 

P3: Still on the liquid diet huh? 
Me: Yup. Broth and Odwalla for the win!
P3: Well, at least you must be losing a lot of weight. 
Me: Well I guess some, but I'm actually doing a pretty good job maintaining my weight. 
P3: Well, it wouldn't be so bad to lose a little weight, now would it?
Me: It would if it meant my body was literally eating itself due to malnutrition. 
P3: Oh. 

Subtext: Fatty, you are missing the silver lining in this whole Crohn's business-you could lose a size or two and really REAP THE REWARDS of this disease!

The sad thing is, these are my friends and family. They mean well. They want the best for me. And the people with my best interests at heart are still the ones supplying endless fodder for this blog. 

Excuse me while I go assume the meerkat position in the corner. 

Post #65: Lions and tigers and bears.....on the wall

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

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

 

Look, I'm sure this is great for kids, but I don't want to have a pelvic exam in the safari room. Just saying.

 

Yesterday I didn't blog due to obsessive CNN watching and stress eating. I'm feeling much better today. That means another 2-for-1 post, GET EXCITED.

 

Prompt 6: Write about a time you had to take the high road.

Prompt 7: Redesign a doctor's office or hospital room.

 

I honestly can't pinpoint a concrete example of where I've taken the high road (trying sooooo hard not to make pot jokes right now); maybe I don't do it that often. However, I think a version of taking the high road is allowing other people to have different viewpoints and being confident enough in yourself to not have to justify your opinions or try to "win" every fight. Obviously, 6+ hours of continuous election coverage last night meant exposure to a whole stable of talking heads, both democrat and republican. Our political landscape is divisive and fractured, and often the debate over issues turns nasty. I'm as guilty as everyone else of sinking my claws into an opinion and refusing to shake free, but I also realize I don't have the monopoly on "rightness." I don't think reaching complete consensus on an issue is possible, or even healthy.

 

Bringing this around to Crohn's, as this is a Crohn's blog, I've come to realize that other people will have opinions about my health that I don't agree with. At first, I thought I had to EDUCATE EVERYONE and make sure we were all in agreement; I felt like since I had the disease, I got to dictate the thoughts and feelings of the people around me. If this year has had a theme, it would be "shit I can't control"-and this is another thing to add to the list. It's ok if people don't agree with me about how I'm handling my Crohn's-the problem comes when they try to force those views onto me or voice their opinions in a way that is offensive or callous. They have a right to disagree (hell, my own doctor does), and I have the right to kick them in the bad place. See how that works?

 

If taking the high road means being gracious, and accepting stupid/hurtful comments in the caring spirit in which they were offered, I'm working on it.

 

Now, to the interesting question! I've been thinking about the notion of redesigning a doctor's office, and I came to the conclusion that I don't want much to change. There is something calming about the fact that all doctor's offices, across disciplines, look the same; like a McDonald's in Australia, I know what to expect. I don't want cutesy artwork, or soothing pastel paint; I don't want tufted armchairs, or chandeliers on the ceiling. This is a doctor's office, not a spa, hotel room, or coffee shop. It doesn't have to be cute. Besides, extra clutter/decoration would only detract from the most important feature of an exam room: cleanliness. If you can't pour a bucket of disinfectant on it, it doesn't belong in the room.

 

A note on the picture above: I once had to have a lengthy procedure (2-3 hours) in a room that was apparently used for pediatric patients. There were happy robins and rainbows and clouds painted on the cheerful blue walls, and as I lay there I became increasingly irritated at the innocent woodland creatures. Suffering and medical procedures shouldn't happen under the bright eyes and bushy tails of the inhabitants of the enchanted forest. It was creepy-but then again I'm not a three year old. Anyway.

 

Here are a few things that I think would enhance the MEDICAL experience in the doctor's room-I spend enough time in them to know.

 



BIG SCREENS ARE USEFUL. This lady agrees.  



 1.) Big ass screens

Every exam room has a computer, but how useful would it be to have a big ass screen, that you could ACTUALLY SEE, where the doctor showed you images and maybe a fancy computer generated animation of your condition? I'm always trying to look at the damn computer and then I feel like I'm all up in my doctor's business. Plus, maybe they could draw on them like football commentators. That could be fun.

 

This waiting room is hot because of the doctor's smouldering gaze. Rowr!

 

2.) Programmable thermostats

I always get hot in the waiting room, and not in the good way. I don't care if it was just a matter of a few degrees-giving the patient the ability to control the temp would make the wait a little more pleasant. I'm always opening the door a crack, and then a nurse always closes it, because patient confidentiality blah blah. But really, I DO NOT CARE about the random lady's hernia in exam room C, I JUST WANT TO GET A BREEZE GOING.

 

3.) Non-institutional clocks

I guess this falls under the "decor" category, but I just wish that the clocks didn't look like they belong in a school (or a prison).

 

4.) Non-abrasive Kleenex

That shit is like knit sandpaper.

 



Like these, but not about Herpes.



5.) Medical pamphlets

I've been to at least one doctor that had pamphlets in the exam room, and it was sure as hell more interesting to read through these bad boys than a copy of Field and Stream from 1996. Most doctors have pamphlets in the waiting room, but who wants to grab a bunch of them in front of other people? If adults don't get a lollipop for good behavior after doctor's visits, there should be at least some takeaway gift. Like a pamphlet about colonoscopies! I KNOW I WANT ONE.

 

I think that's a good start. As I said, I like my exam rooms sterile, just like I like my doctors in white coats, my stethoscopes warmed up, and my sedatives strong. I don't need the waiting room to be sea foam blue-as long as there is a jug of hand sanitizer, a crinkly paper wrapping on the exam table, and a hint of disinfectant in the air, I'm good to go.

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 #49: Really? Really?!

Taking pills this way would be less traumatizing and NO I'M NOT STRESSED OUT ABOUT TOMORROW WHY DO YOU ASK?!

Sigh.

I usually don't post every day, because I don't think anyone needs to hear about my AAC more than like twice a week, but I'm going a little stir crazy so here's another post. Embrace it.

I thought I'd include another edition of "stupid shit people say to me about my Crohn's." I would call it just "stupid shit people say," but then I would have too much material. For the record, I don't write down all of the stupid shit (re: Crohn's) that people say to me; I don't have a secret notebook where I rate the comments by stars according to hilarity, lack of empathy, or cluelessness, although that's kind of a good idea. To the scene! 

The scene: long distance phone call with distant elderly relative.

This relative has only the BEST INTENTIONS towards me, so I didn't take it personally. You will note that  I was kind of at a loss about how to respond (see below) to pretty much the entire conversation. However, I did refrain from making sarcastic comments, which is obviously a sign of personal growth. Enjoy!

Relative: So, what's up with you? How are you feeling?
Me: Well, not so hot (I thought someone told her about my Crohn's). You know.
Relative: Oh really? What's going on?
Me: Oh, I thought you already knew. I was diagnosed with Crohn's a few months ago.
Relative: OH NO. That is terrible. I am so, so sorry! That is terrible, just terrible.
Me: Um, thanks? It's ok, I'm going to try a new medication next week, so....
Relative (on a roll): What a drag! I'm just so sorry. God! Well, I guess this is just evidence that bad things happen to good people. I'm so sorry.
Me: Um, thanks?
Relative: You know, I knew a young lady who had it. She tried every medication they had, but they didn't work, she ended up taking the whole thing out.
Me: uhhh......
Relative: But she's totally fine now! In fact, after the surgery, she managed to find a husband.
Me: What kind of surgery did she have?
Relative (still rolllllling along): You know, she never was a looker, kind of a big girl. She didn't even have a pretty face, but she still found a guy!
Me: Um, good for her?
Relative: Wow, such bad news. I'm so, so sorry. God. That's terrible, just terrible.
Me: Thanks. SO HOW'S THE WEATHER NEAR YOU?

Sigh.

Post #46: I suck at Crohn's

I'm not a doctor or anything, but I'm prettttty sure that car is going the wrong way. This is not going to end well.

I went out to lunch today with my hairstylist/life coach/surrogate aunt today. She's unapologetically in love with cats, waiters, and old Jewish women. A good 50% of her wardrobe consists of leopard print. She stores things in her bra (cell phone, money) so it constantly looks like she's feeling herself up. She calls everyone "honey" and does so in such a genuine fashion that she totally gets away with it. She rolls her eyes at my bullshit and gives me insight into my problems, whatever they may be. We meet for lunch and end up talking for 2 hours. She always gets the check. I heart her.

I was telling her about something insensitive that someone had recently said about my Crohn's. She's had her own share of health issues, so we can commiserate about these kinds of things. I was saying how incredibly frustrating it is when other people assume they could handle your disease in a more productive/functional way. I've encountered this a lot, and I've been guilty of it as well. Looking from the outside in, it's easy to think, well, are they doing everything they could be doing? Why are they still sick? If I were them, I would be more proactive. I would do x, y, and z to make sure I was really addressing the issue. THEY ARE BEING SICK ALL WRONG!

The message may be cloaked in fake concern, obnoxious advice, or endless anecdotes about the many people they know who have the disease but are handling it better, but it all comes down to this, at the end: you suck at having this disease.

Do you know how hurtful it is to have someone essentially tell you you fail at being sick? I'll tell you: pretty fucking hurtful. If you hadn't noticed, this is something of a sore spot for me, because part of me thinks they might be right. Maybe I should be "over this" by now, maybe things should be better. Maybe I should only eat cream cheese and bundt cake, like my friend's sister's co-worker's niece did-it really nipped that Crohn's in the bud! Maybe I should be running 5 miles a day to decrease my stress levels. Maybe I should be doing hot yoga and drinking kombucha and getting acupuncture (I strongly dislike all of these things).

Eventually, my thinking brain clicks on, and I remember: FUCK YOU. How dare you suggest that you could do this better? I'm doing what I can, when I can, trying to make difficult decisions and live my life with a chronic illness that kind of dropped into my lap right after my last birthday (happy birthday to me!). This is not a graded exercise. This is not an Olympic event. You can't GRADE MY MOTHERFUCKING PERFORMANCE. I'm not aiming for gold here-I'm just trying to figure shit out. That's more than good enough for me, and it will have to do for anyone else.

Hhmmph.

My hairstylist/life coach/surrogate aunt told me a theory one of her clients had about illness: people expect the McDonald's experience. You get a disease, go through the drivethru (see your doctors, get your surgery, etc.), and emerge with pills in hand-and a cure. It's a simple trajectory, and one that people can relate to. You got sick, and then you got well. Illness done, fries consumed, moving on with life.

My disease will never function exactly like that. There are treatments, but no "cure." There will be periods of sickness and (this is the goal) periods of relative health (remission!). Some symptoms will be unexpected. I will never drive away with a McFlurry and a simple solution.

I write all of this to get it off my chest, for sure, but also because as much as I hate the impulse to judge people's "illness performance" I do the same. freaking. thing.

At lunch, my hairstylist/life coach/surrogate aunt  was telling me about a recent health scare, and my first reaction was to tell her how to deal with her health problem. I wanted her to be more aggressive and assertive, and see the BEST doctors at the BEST hospital immediately. She listened to me rant, and then kind of raised an eyebrow and smirked. I was taken aback at the forcefulness of my reaction, and she calmly told me that she was dealing with this in her own way, in her own time, with her own doctors. I jumped in with my opinions because I was concerned, and I care about her.

Sometimes people say mean, stupid shit, and you should call them on it. Sometimes, sometimes, they might say stupid shit out of love and concern. And sometimes, when you say stupid shit or lack the self awareness to realize you're exhibiting the very same behaviors that you deplore, it's useful to have a friend who loves you enough to point it out.

Post #40: GIVE ME BACK MY STEROIDS

This is what comes up when you google "clinging to a pill." If this adorable bird can shop for steroids in his tiny cart, he is MY NEW BEST FRIEND.

Sigh.

If you haven't already guessed, I'm off of the steroids. I dragged out the tapering as long as humanly possible, but here I am, steroid-less and sad. Today I had wicked cramps, the kind you can't really walk off, so I got into bed and curled up like a potato bug and rocked back and forth until it was time to sprint to the bathroom. Since I had a lot of time to to think in there, I concluded that it was probably not a good sign that DAY ONE off of the steroids was so spectacularly unsuccessful (success being defined as the absence of explosive diarrhea).

Since I'm tired and feeling defeated, I thought I would focus on the stupid shit people have been saying to me all day. This is part of the reason I am feeling tired and defeated, besides the lack of delicious, delicious steroids. Enjoy!

Scene1:






Me, in the fetal position (see above, except that I was not so happy. Also, I don't have white pajamas and my ass is bigger). In pain.
Person I live with (PILW): Oh, I'll come back, you seem busy.
Me: I'm not busy, I'm having cramps. What do you want?
PILW: No no, you're busy, it can wait.
Me: No really, what do you want?
PILW: Are you in pain?
Me: Yup. What. do. you. want??
PILW: I was looking for some mail. I'm missing a magazine. Did we not get this magazine this week? Maybe it was a double issue last week. I don't remember getting one last week, either. Have you seen it? I wanted to read it. Really, I can come back.
Me: (picturing fire ants consuming lower half of person's body): Haven't seen it!!
PILW: Well, ok. (stands there). Right. (leaves room).


Scene 2: Shortly after resulting colon explosion

Me, sitting on couch drinking some OJ. Feeling sorry for myself. Clutching pearls.

PILW: How are you feeling? Are you ready to go?

Me: Like crap. And no. I don't think my colon is done.

PILW: Well, can you take a shower while you wait? Then we'll be ready to go.

Me: No! I am resting. I'm going to drink some juice and wait and see what happens. If you want to go right now, go without me.

PILW: No, no, I want to go with you. So, what do you figure-about a half hour? Then we'll go?

Me: My colon doesn't have a pop-up timer like a motherfucking turkey. I don't know when it's done. I can't give you a timeline.

PILW: (looking unsure). Well, I'll just wait.

Me: If you stand there and stare at me the whole time, I may kill you in the face.

PILW: I'll just go in the other room. So, after lunch we'll go, right?

Me: Sigh.

Scene 3: Later in the afternoon. At Costco, home of the cheapest, most phallic hot dog in town.

Run into family friends in the beverage aisle. Haven't seen the male half of the couple in a while. Pleasantries are exchanged.

Guy: You look great! (strike one) Have you lost weight recently (strike two!) ? You're looking really great (and you're out!)

Me: Um, yeah, thanks. You know, the whole not eating thing.

Guy: So the not eating thing is working for you huh? My son's friend, now this was a long time ago, I don't think they do this anymore, but he broke his jaw, and they wired it shut! Had to eat all of his meals through a straw. Now, that was a real weight loss solution right there.

Me: I'll keep that in mind.

Annnnnnnnnnd, FIN.

UGH. In other and perhaps related news, the clenching continues.

If nothing else, I would like to say yeah for 40 posts! I never stick with shit this long. Hopefully the next 40 will be filled with a calmer AAC and more happiness, puppies, and rainbows (and the chest hair of one Mr. Tom Sellack).