Post #68: I am not FB friends with my AAC

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You went out for "thirsty Thursday" with your friends?! You have opinions about the election?? GET IN MY PANTS NOW.



Today's prompt: Should people post about their (or loved ones) health on Facebook? Why/why not?

 

Oh, Facebook. Home of sunny vacation pictures, carefully staged food photo ops, and babies of varying degrees of cuteness.

 

I was a latecomer to the FB game; I joined after the initial frenzy, and as a result I have a reasonable number of "friends" (i.e. not over 500). I can't imagine broadcasting news of my AAC to even that pared down list, let alone a collection of hundreds of virtual strangers. I'm not going to judge people who do post about their IBD, but I am not comfortable talking about mine on FB. I don't even "like" Crohn's organizations or blogs. I don't want people to know that way.

 

Here's the deal: FB is mostly about three things. First, it's where you go to show how awesome your life is. People post engagement pictures, wedding pictures, new baby pictures.....FB has replaced old timey life cycle announcements in newspapers (unless you are super fancy/loaded, in which case you will always have the New York Times wedding section). In my baby book, my mom cut out my birth announcement from the local paper; that was how her friends knew I had been born. Today, she would post a picture of me in my little hospital blanket and baby hat on facebook minutes after I was expelled from her womb.

 

Second, Facebook is also the home of the "humble brag." I was reading an article in a lady magazine when I first encountered this term, and it's so freaking applicable. A few examples:

 

1.) My back is so sore! Loading those pallets of diphtheria vaccines for Doctors without Borders can sure tire a girl out!

 

2.) Marathon training is hard, but I'm doing it for cancer research! It's a good thing my new boyfriend Steve, the doctor, is there to help bandage my wounds and rub my bloody feet. Thanks honey!

 

3.) Wow, my new job is hard. I don't have time for a social life, but I guess traveling the world for the Gates Foundation and ensuring that all of the earth's children have access to clean drinking water is worth missing a few happy hours.

 

People have become MASTERS of the humble brag on FB; it's natural to want to share the details of your fabulous life/job/relationship, but you don't want to be an asshat about it. What you realllllly want, of course, is validation about your (awesome!) life experience in the form of a virtual thumbs up.

 

Finally, FB is the place to demonstrate your highly attuned social consciousness or offer biting tidbits of social commentary. It's the new place to show off your smarts. This became glaringly apparent during the elections, when suddenly every single FB friend turned into Thomas Friedman, offering solutions to fix the economy and bon mots about the quirks of the American electoral process.

 

So. If FB is about sharing awesomeness or humble-bragging or proving that you read stuff, how exactly does Crohn's fit into that mix? Here are things you will never see me post on Facebook:

• Going in for my colonoscopy-who spent 18 of the last 24 hours having explosive diarrhea? THIS GIRL!
• Just got back my weekly blood work-I am the inflammation queen! #blooddrawallstar
• At least all of this medication related hair loss is making my hair easier to style! (SMILEY FACE)
• Had to cancel lunch plans -sticking with toast and Gatorade today! Whooooooo!
• 3 doctor's appointments in one week? How did I get so lucky? AWESOME SAUCE!

 

Ok, I don't really talk like that, but you get the point. These are not momentous life events that I want to share-these are frustrating, everyday occurrences that don't merit posting on the FB wall of awesomeness. Unless my AAC wins a Nobel Prize while vacationing in Tahiti with Colon Firth (ha!), you're not going to hear about it.

 

When I first got diagnosed, I briefly toyed with the idea of making some grand announcement on FB, because I knew my friends and "friends" would offer kind and supportive words, but ultimately I decided that this was one thing I was going to keep private. I choose to do my over sharing on an anonymous blog. A few friends know about it; if they want to know how my AAC is faring, they can come here. If not, they can read my status updates about the election. It's their choice, and that's important.

Post #67: Yoga pants for all!

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I want toilet paper, Santa. Roll and roll of toilet paper!

 

Today's prompt: Community Care Package. Create the perfect care package for your members or fellow patients

I am going to list the things that should come in the "Crohn's 101" care package every newly diagnosed patient should receive:

• Valium-so much Valium
• Toilet paper-so much toilet paper
• Moist wipes-so many moist wipes. A container in each bathroom and little individually wrapped singles for your purse.
• Free counseling vouchers-SO MANY FEELINGS
• Heating pad: for pain
• Pain medication: also for pain
• Heated toilet seat-toasty!
• A doctor's note explaining your condition: you will need this for work/school/jury duty/nosy relatives
• 10 pairs of yoga pants: you will be too tired for real pants
• Toast: say hello to your new favorite food!
• The name/number of someone in your area with Crohn's-useful
• Reading material- you will need something to occupy yourself in the bathroom, in the doctor's office, in the waiting room....
• Crohn's 101 book-may as well get all of the information before you freak out!
• Crohn's health monitoring checklist-this is an actual thing click me!
• List of IBD blogs-everyone wants to read about my butt
• Coupon for a free MRI-everyone loves a freebie
• Pill organizer-self explanatory
• Humorous Crohn's mug-with a pithy saying, like "I have Crohn's, but Crohn's doesn't have me!" Patient can throw mug at wall for stress release
• Make your own scarf kit-you will need a hobby
• A second opinion-won't fit in the box, but everyone should get one

 

Wow, this is a really depressing list! However, I would still take the heated toilet seat and the free MRI.....yeah ok, and the mug. I like free swag, what can I say.

 

I was kind of enjoying this daily blogging thing until today I realized it means you have to think about your health......everyday. I'm a little tired today, so I think I can be excused for COMPLETELY MISSING THAT POINT until now.

 

Yesterday, I had one of those nights. I got vaccinations this week, one in each arm; last night left arm hurt (it's getting better, but it still has a hardish bump near the injection site....adventures!), right arm itched, and my right side hurt. I couldn't get comfortable; I kept switching from side to side like a chicken on a spit until I realized that I couldn't sleep on either side because of pain. REALLY, colon? REALLY, painful arm? BOTH AT THE SAME TIME!? NOT COOL.

 

I fell asleep on my back, finally. I was not amused. I could have used some of that free sample Valium.

Post #66: How do I mail this, exactly?

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If I got a letter from my colon, I don't think I would open it without gloves. Special delivery indeed!

 

Today's prompt: Write a letter to your health.  

 

Here goes:  

 

Dear AAC,

 

I'm going to keep this short and sweet, because I've already cried enough this week.

 

AAC, you were not the birthday present I was expecting last year.

 

You are not the birthday present I want this year.

 

In a deep secret place, I realize I can't blame my body for expressing a disease. I can be angry-I can fill pages and pages with ugly words of rage and hate, bemoaning this situation-but it's nobodies fault. That might be the most infuriating thing of all.

 

AAC, you are an easy target for my frustrations. But I hope you know that more than anything, I want to heal you. I want to let you do your job. I don't want us to spend another year struggling with the varied miseries of Crohn's.

 

I know there is no quick fix for our situation, but this year I hope we can find more balance. I promise not to flood your system with dairy products or high fiber vegetables. I promise to let you rest when you are tired. I promise to keep buying those moist bathroom wipes you like so much.

 

In return, I ask for patience as I try to find ways to give us both relief.

 

I hope we can figure all of this out, together, so that our greatest problem is when I stupidly eat way too many dark chocolate truffles during a random seasonal potluck because THEY LOOK SO GOOD. Remember the good old days?

 

Wishing you the very best this holiday season,

 

xoxo,

 

-other AAC

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

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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 #64: A little gentle ranting

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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 #63: I am AAC (hear me roarrrrr)

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I REMEMBER THIS! I think I had the yellow bear.

 

Le prompt: Disclosure post. How do you decide what to share? What do/don't you share?

 

As a proud child of the 80's, the picture above is the first thing that came to mind (caring is sharing!). Oh, if only I lived in a land of multi-colored bear friends, with happy flowers and clouds and rainbows (and I guess other shapes? It's been a long time) that shot out of our abdomens. Good times.

 

Back here in reality, it's a dicey issue about what to share and what to keep private. I mean, I haven't even disclosed my name, which should tell you about the reticence I feel when writing about my AAC online. My inbox is filled with half written posts that I've copied and pasted and sent to myself, posts that were either too personal, too gross, too whiny, or a combination of all three.

 

A lot of those posts are about my family, and their reactions to my Crohn's, and they didn't always paint these people in the kindest light. Getting this diagnosis meant change and adjustment for all of us, and it was not always a graceful process (still isn't, sometimes). I don't think they know about this blog, and I am certainly not going to tell them. The family dynamics that play out on the periphery of my Crohn's experience are not what this blog is about. To explain another way: I've written in the past about this being a very internal (physically, duh, but also emotionally) disease. Unless you're running to the bathroom or having an accident in a store somewhere, most people are not going to look at you and say, oh, she's got Crohn's (and probably not even then). My family members, however, get to see (and hear about!) this disease in all it's ugliness. They already see more than I am comfortable with, and I don't think they also need a peek at what's going on in my head.

 

So I don't write about family (usually), and I don't share this blog with them, but pretty much everything else is on the table. I did once delete a post that was too graphic (medically, not like 50 shades style), just because it grossed me out; but on the other hand, I did write about how I pooped on the couch. In the beginning, when I was undergoing all of this testing and taking a leave of absence from work and spending a huge chunk of my day in the bathroom, I basically lost my give-a-shit. I didn't care about trying to protect my modesty or maintaining decorum or even adhering to the whole "if you wouldn't discuss it at a dinner party, don't WRITE ABOUT IT ONLINE" idea. I was beyond caring. I was getting introduced to Crohn's, and I learned that there is nothing cute, pretty, or quiet about this disease. I started writing accordingly.

 

I tend to over share in person, so I'm sure that comes across here. I'm pretty open and honest about what I'm experiencing, because sugarcoating the truth about this disease serves no one. I would hope that if someone I knew read this blog, they would not be too horrified by the things I disclose, and that they would gain a better understanding of what it's like to live with Crohn's. That's it. You don't need to know my name, political persuasion, shoe size, or favorite color to appreciate what I'm going through, so I stick to the basics. I am AAC, I have an AAC, and that's what I'm here to talk about. 

Post #62: Paging a doctor with an AAC....

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When I do research, I like to unbutton my sweater too. Data gets me all hot and bothered.

Today's super fun prompt: "I don't know about this, but I'd like to."

 

Hmmm. There is a lot I'd like to know about Crohn's, and a lot I don't understand. I try to keep myself updated on the latest published research, and I tend to spend a lot of time trolling various message boards to learn how other people are dealing with the symptoms/side effects I'm experiencing. But however much time I devote to these pursuits, I don't have a medical degree; I'm not a doctor, and I can only filter the information I find through a patient's mind.

 

What I would like to know is how a doctor with Crohn's deals with his/her disease.

 

If I had a fuller understanding of the human body and how it works, and a medically grounded viewpoint from which to view this disease, I wonder if I would be more or less likely to approach new and novel (and potentially fatal) treatments with apprehension. I know many doctors choose a field of study based on family history and experience; my own doctor has family members with IBD, and I like to think it gives him insight into the emotional and psychic toll this disease can take on a person. As far as I know, however, he doesn't have the disease himself. This is a crucial distinction. It's one thing to appreciate the effects of this disease, but another to experience them yourself.

 

I wonder how a doctor with Crohn's deals with the pain, fatigue, unpredictability, and uncertainty. I feel like doctors in general must view disease differently than the rest of us, as they see it so intimately on a day to day basis. Are the Crohn's doctors more proactive about their treatment? Are they doing things that would benefit the rest of us? Do they weigh the various studies and statistics differently because of professional insight?

 

Whenever my doctor talks to me about the risks/benefits associated with a particular course of treatment, it seems I'm usually focused on the risks and my doctor the benefits. Last year I went to a Crohn's symposium where a doctor graphically illustrated the cancer risk associated with a class of drugs. Thousands of little gray people (healthy) and a few red ones (cancer)-an acceptable trade off for the potential benefits. I was offended by this presentation, and it took me a while to figure out why: I felt like he was being cavalier about the little red people. The graphic was intended as a visual means of representing the "minuscule" risk associated with the drug, and the overall message was: calm down! Don't focus on the red people! It probably won't be you!

 

When I had time to think about it, I realized that the doctor wasn't looking at the chart from the mindset of a potential red person; he was all grey, all the way. It wasn't a risk for him. If the risk is not real, not personal, how can he allay my fears? It sure as hell is real to me.

 

My own doctor once said, after a lengthy conversation about the statistics, "You know, we want our patients to be healthy. If your Crohn's is better, but you develop cancer, that's not a win for us. We try to calculate the risks  of treatment and make the safest possible choices." I understand there are risks involved from every angle: taking a drug, not taking any drugs, having surgery, driving the car to the doctor's appointment.....I just wonder what choices a doctor with Crohn's makes, with the personal fear and the professional knowledge.