Post #84: Brought to you by the letter B

Most. Depressing. Advertisement. Ever.

Can you imagine if Santa really did have Crohn's? He'd have to tow a port a potty behind the sleigh....although technically he would have access to all the bathrooms in the world. It seems especially cruel to leave milk and cookies for IBD Santa, when what he would really want is candy coated Imodium. If you're on the naughty list, maybe IBD Santa clogs your toilet! Or poops in your stocking! Ewww. Annnnnd, we're done.

Why is this post brought to you by the letter B, you ask? B stands for bloated, balding (one baldish spot up front, now covered by bangs but still freaking me out), bitterness, bitchiness, BIRTHDAYS, and bananas (bananas are easy on your stomach, FYI).

As you may have guessed, I'm steroid free, and my AAC is not loving it. Add to the mix a cold I picked up from some random lady who was hacking next to me during class at the gym, and a time of year that usually makes me introspective and moody, and whee! Welcome to the party.

It's pretty much my one year Crohn's anniversary (yeah! said no one). I'll have a colonoscopy early next month to see where things stand, but I pretty much know what my next step is going to be.

hahahahaha so true.

This year the prospect of planning a "fun" birthday is especially depressing. Last year, for my big milestone birthday, I was feeling like crap, and promised myself I'd plan mini-celebrations throughout the year to make up for the fact that I could barely drag myself out to lunch on the actual day. I thought I would be feeling better, and I looked forward to "getting back to normal." It's been a year now, and I still feel like crap (my stomach is very loudly agreeing with that last statement).

With the exception of a few good stretches brought about by my favorite little pink pills, I'm pretty much where I started. I've had more tests, I have more experience, but I don't have anything approaching a workable solution for the problem. This past year has been full of pain, frustration, fear, and uncertainty. It has also been filled with small wins, and some bigger ones, including the fact that I'm still standing despite all the shit that's been thrown my way in the past 12 months (I mean that metaphorically, there wasn't a roving band of monkeys throwing feces at me. Just to clarify). I'm here and I'm still hopeful. That in and of itself is something to celebrate with (dairy free, low fat) cake.

So I have a birthday coming up, and a colonoscopy, and the fresh slate of a new year (I wish it could be that easy-Crohn's was soooo 2012. Peace out IBD in 2013!). I don't know what's in store for tomorrow, let alone the next year, but I still find myself making plans, listing things I want to accomplish. I hope I will be able to cross some things off that list. I hope I will be able to have twice as many mini parties to make up for the past two years of shitty birthdays. I hope I will spend less time on the couch, bed, and toilet and more time out in the world. I hope-I guess that's the main thing. I still hope.

Post #83: My brows need IRON

dun dun DUN....(cue soap opera big secret reveal music)

I was watching this episode of Will and Grace a few days ago, and for some reason I can't remember Jack lost an eyebrow, was wearing an eye patch, and then had Grace draw on this stunningly natural sharpie version. Haha, oh Jack.

In related news, I went a litttttle overboard on the plucking (again). It's not as pathetic as last time-one eyebrow isn't cocked significantly higher than the last one-but they still look pretty anemic. I am putting myself on a strict no-plucking diet for the rest of the month, which is a shame because tweezing is my happy place.

Someone was telling me that when they were overwhelmed, they piled on the eyeliner-my eyebrows themselves are my stress barometer. And I'm feeling stressed out. Everything (knock on wood a few times) is holding relatively steady-I have one more week of steroids left, and then I will be totally off them. I exercise 5 days a week. I eat out. I'm finally taking my freaking vitamins. And yet, like the understated, elegant beauty that is Jack, I am giving a huge SUPER THIN EYEBROW RAISE to the whole situation.

I just feel edgy and....concerned. Wary. There is so much riding on this last bit of tapering, and then my body's reaction to just being on the one other drug. I find myself craving late night cookie binges and bad TV. I pulled my quilt out of the dryer today and wrapped it around myself and just stood still, in the middle of the kitchen, because I felt so happy and warm and safe. I crave comfort, and sometimes old habits are the most comfortable of all. Cue eyebrow tweezing, stress eating, magazine reading, and Internet shopping. Wheeeeee!

What is especially ironic is that at a time when I am worrying about the hair on my head, I gladly removed a lot of the hair above my eyes. Everyday my hair looks a little more deflated (to my eyes, anyway). It still comes out in the shower and when I comb my hands through my hair after. I keep waiting for the tipping point, the point at which my scalp becomes visible beneath my hair, or I develop a bald spot, or whole clumps start falling out. Part of me just wants to shave it off and be done with it, but that's not right.

So, I keep going. I keep doing what I'm doing until I have my colonoscopy, so I can make more informed decisions. I'll keep sweating with the oldies, and try to resist the siren call of the sugary treats in the freezer. I'll just keep waiting. I'm pretty good at waiting. I've had a lot of practice.

Post #82: We don't know what we don't know

Savasana

I've been doing yoga lately-once a week-and I find myself looking forward to it. I don't particularly enjoy the crowded, stuffy room, or the sweat that runs into my eyes, or the way my arms and legs shiver and shake when I hold a challenging pose. I do like the fact that just for an hour, I am totally focused on the things my body can do, and not the ways in which it malfunctions. At the end, as a reward, you get to do Savasana, or "corpse pose" (shudder). This is my favorite part. You're exhausted and sweaty, and completely inhabiting your body, such that you feel the heaviness of your limbs as they connect to the floor, notice the rise and fall of your chest, feel the tightness in your lower back release like air from a balloon. It is surrender.

 

At the end of the pose, which always comes too soon, the yoga teacher reads a kind of daily affirmation, with a quote and a takeaway message. I don't always remember them, but it always seems like they are applicable to my experience in some way. This could be the happy exercise endorphins, or the fact that I'm probably more receptive to this kind of stuff when I'm too tired to be snarky. We were doing a stretch and the teacher said we were basically wringing ourselves out, like a sponge. That's exactly what yoga is: as I twist and bend my body, all of the fear and negativity and worry are squeezed from my body. I never want to punch anyone after yoga.

 

All of this is a lengthy preamble to this quote I'm going to post below; you can find it (and the awesome music) here. It should come as no surprise, if you read yesterday's post, that I ate all the cookies. So many cookies. I stress ate before the Crohn's, so why should now be any different? I mentioned that I was frustrated with myself for perpetuating this cycle, of doing the "normal" things I did before and expecting-hoping for-different results. I'm frustrated again tonight (and nauseous!), and then I found this quote. It's exactly what I needed. Yoga AND an Internet affirmation? Today was a good day.

I will never be a brain surgeon, and I will never play the piano like Glenn Gould.

 

But what keeps me up late at night, and constantly gives me reason to fret, is this: I don’t know what I don’t know. There are universes of things out there — ideas, philosophies, songs, subtleties, facts, emotions — that exist but of which I am totally and thoroughly unaware. This makes me very uncomfortable. I find that the only way to find out the fuller extent of what I don’t know is for someone to tell me, teach me or show me, and then open my eyes to this bit of information, knowledge, or life experience that I, sadly, never before considered.

 

Afterward, I find something odd happens. I find what I have just learned is suddenly everywhere: on billboards or in the newspaper or SMACK: Right in front of me, and I can’t help but shake my head and speculate how and why I never saw or knew this particular thing before. And I begin to wonder if I could be any different, smarter, or more interesting had I discovered it when everyone else in the world found out about this particular obvious thing. I have been thinking a lot about these first discoveries and also those chance encounters: those elusive happenstances that often lead to defining moments in our lives.

 

[…]

 

I once read that the definition of insanity is doing the same thing over and over and expecting different results. I fundamentally disagree with this idea. I think that doing the same thing over and over and expecting different results is the definition of hope. We might keep making mistakes but the struggle gives us a sense of empathy and connectivity that we would not experience otherwise. I believe this empathy improves our ability to see the unseen and better know the unknown.

 

Lives are shaped by chance encounters and by discovering things that we don’t know that we don’t know. The arc of a life is a circuitous one. … In the grand scheme of things, everything we do is an experiment, the outcome of which is unknown.

 

You never know when a typical life will be anything but, and you won’t know if you are rewriting history, or rewriting the future, until the writing is complete.

This, just this, I am comfortable not knowing.

 

-Debbie Millman (previously) in Look Both Ways: Illustrated Essays on the Intersection of Life and Design

Post #81: The cookie conundrum

But also Crohn's, Cramps, and Constipation!

 

Yeah, no more enforced blogging! I have to say, that really sucked the fun right out of writing a Crohn's blog, ha.
 
Before I forget, it was great to see too IBD related articles on one of my favorite websites: read them here and here.
 
I'm watching Sandra Lee's Taverns, Lounges, and Clubs (TLC-get it?! get it??), otherwise known as the Sandra Lee alcohol appreciation hour. This chick loves her booze. You have to appreciate someone who managed to make drinking her JOB.
 
Back in AAC land, the tapering off steroids continues, as does the increase in symptoms. Shocking, I know, but I keep putting all of my hope in being able to maintain steroid-free remission without having to take new and scarier drugs. It's like watching the same movie over and over again and hoping for a different ending. Complicating the issue is the fact that I continue to eat as though I'm on a full dose of steroids. Smart! As I approach my one year diagnosis anniversary (for my one year anniversary, I'll be registered with Charmin-just kidding, I still HATE THOSE ADS), you'd think that some of the lessons learned in the preceding months would stick: fatigue is unpredictable. Decrease in steroids=increase in colon explosions. DAIRY IS NOT YOUR FRIEND.
 
I guess I'm a bad Crohn's student, because I keep having to take, and fail, these tests again and again. The desire for normalcy, represented nowhere more powerfully than on the plate, is constantly testing my resolve. For every time I avoid plunging my face into red velvet cake (yesterday afternoon) I go out and think that suddenly I can magically eat lettuce (yesterday night). I forget about all of the cramps and bloating (this morning) and really want a cookie (right now). It's a continual cycle of frustration and remorse.
 
Welcome to the cookie conundrum: the reason that eating is so fraught with fear and suspicion. If I do eat the cookie now, I will probably be sick tomorrow morning, thus interfering with Yoga, which is my favorite fitness center class of them all. If I'm extra sick in the morning, and still do yoga, I will have even less energy tomorrow afternoon, which means a longer nap and a disrupted sleep schedule. Riddle me this: how can you possibly plan two moves ahead when your colon could decide at any moment to throw a wrench in your plans? You can't.

You can't control variables like fatigue, and even if you only eat "safe" foods you still might end up feeling sick. One of the many annoying truths about Crohn's: a cookie is never just a cookie-but sometimes it is. I can plan five steps out to accommodate eating one of my favorite "normal" foods when I'm out with friends, and still wind up spending my morning in the bathroom. Conversely, I can think, screw it, eat two cupcakes, and lift weights with the ladies at 9am. You never know.
 
Basically, even if you make (smarter) choices that lesson the likelihood of symptoms, there is no fail safe diet, or ritual, or exercise or pill, that will prevent them all together (or at least, any that I have found). I'm still trying to wrap my head around that reality. I'm used to having a more logical relationship with food: eat well, feel well. Eat fried chicken, feel like crap. Eat chocolate, may as well have taken a laxative. A year into this Crohn's business and it's still hard to accept that these rules don't necessarily apply anymore. Sure, the fried chicken thing is still true, but a cookie didn't use to have the power to make/break my daily plans.

Maybe that should be a motto contender for this year:

It all starts with one cookie.
 
or:
 
C is for cookies, BUT COOKIES AREN'T FOR ME.
 
or:
 
JUST EAT THE DAMN COOKIE-you'll probably have diarrhea anyway.

or:

Take a bite of that cookie-do you feel lucky? WELL DO YOU?

 
I'll have to tinker with those.

Post #80: Sweatin' with the oldies

Um, I'm not going to put the NHBPM logo at the top b/c I kind of failed at that. Oops.

Elephant butt!

Hello blog!
 
Here I was at the beginning of the month, all excited to join in the daily blogging fun....and it was fun, until it started to feel like work. Honestly, I don't like thinking about my AAC in such targeted, specific way EVERYDAY. I felt like all of the prompts were getting all up in my business (I mean, I guess that's the point-introspection and what not) and, being the non-confrontational sort that I am, when something gets all up in my business I walk away. Thus, the blog holiday.
 
The prompt for today is about one thing I would like to accomplish in 2013. I have many goals, some health related, some not, but what I'm working on before the end of the year is coming up with 2013's motto. A good friend of mine from college has a tradition of designating a yearly motto instead of writing out resolutions. I heart this idea for many reasons: having a guiding principle instead of super specific goals allows for latitude, and decreases the risk of disappointment and failure. It provides inspiration throughout the year, and it becomes a touchstone of sorts. My motto for the last few years has been the same, and I'm looking for a change.

For the past few weeks, I've been working out at a local community center, taking group fitness classes with descriptors like tone! and sculpt! (JAZZ HANDS!) With the exception of a truly horrifying Zumba class (It was not pretty. I looked like a newborn calf, all spastic movements and flailing limbs. I didn't fall down, but I did kind of want milk afterwards, ha), I've been enjoying myself. The women in these classes-40, 50, 70, 80 years old-bust out some serious moves. They use heavier weights then I do, and out bend the shit out of me in yoga. It's simultaneously humbling and aspirational.

It should surprise no one that I am a back-wall exerciser, the kind of girl who wants to stay away from the mirrors and have a convenient wall to lean on when I get out of breath. The fellow wall leaners have adopted me into their group, and are now pressuring me to take aqua-aerobics. One of them works out in a cashmere sweater, insanely fashionable eyeglasses, inter-locking "C" Chanel stud earrings, and shiny pink lipstick. Today, after some hard core lat work, she plunked down her weights and proclaimed, "Well, just forget it!" and leaned on the wall. All that was missing was a freshly lit cigarette and a dramatic eye roll. I bet she drinks martinis and used to sneak out of 6th period. She's kind of awesome.

The teacher walks around and corrects/harangues people, and after a particularly taxing set of some sort of plank-mountain climber hybrid torture exercise, I was daintily perspiring (hahaha) when I saw her well toned calves out of the corner of my eye (I may have been laying on the floor). Thinking she was going to nudge me with her foot and tell me to get my ass in gear, I huffed, "Just taking a break! Going to start again! Starting right now!" She smiled at me and replied, "Look, you're just starting out and you're doing great. You don't eat an elephant in one bite. Keep it up!" and walked away.

My first thought, as it forced it's way through my frazzled, exhausted mind, was: WTF? Who eats elephants? Next, I had the ridiculous mental image of someone sneaking up on an elephant with a fork in hand and I snorted. Luckily, the wall leaners are an accepting sort, because I must have looked particularly attractive at that moment, passed out beside the stair-stepper and laughing at imaginary jokes in my head. Moving on.

I got through class without vomiting (yeah!) and as I was driving home, I kept turning the phrase over and over in my head. You don't eat an elephant in one bite. Besides being kind of a disgusting prospect, I like the notion of seeing the enormity of the task at hand and just, um, digging in. Starting somewhere. Making progress but knowing there is much work ahead of you. Steeling yourself for a long, slow process of change; accepting that it may be weeks or months before you see the benefits of your hard work.

2012 has been all about damage control and seeking safety. I feel like I've been plodding along without direction, afraid to commit to a plan and risk upsetting what little peace I have attained. It's not that I haven't been doing the work-I'm just working without purpose, and accepting my lack of progress as the price I pay for maintaining the status quo.  I don't know what 2013 will bring, but I do know I need a kickass motto to help me steer towards a different place. This new motto-you don't eat an elephant in one bite-is a contender. Perhaps not PETA approved, but a contender nonetheless.

ps: post 80? whoooooo

Post #79: Thanksgiving (blogging) leftovers

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

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

 

(yeah, about that....)

 

Haha, turkey Fonz. Heyyyyyy.

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

 

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

 

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

 

Les Prompts:

 

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

2.) Create a new technology related to health

3.) Write about change

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

 

LET'S DO THIS.

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

Current doctor:

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

 

Past doctors:

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

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

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

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

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

 

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

Post #78: Brought to you by the letter R

R is for RAGE!


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

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

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

*wait in car*

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

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

*wait in car*

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

*wait in parking lot*

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

*wait in car*

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

*drive away*

Post #77: I think I failed the support group quiz

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

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

 

Why is this pic under "support group clip art?" Perhaps it's a group for big 80's hair and questionable facial hair decisions.

 

Today's prompt: Questions I have for other patients

 

Oh prompt. I have so many questions! It would be easy to ask these questions at, say, a gathering of other Crohn's patients. Like a support group! (sound of running down a hallway and slamming a door).

 

Ok, I'm back. I don't know why I am so adverse to the concept of a Crohn's support group. It has all of the things I say I'm searching for....but the idea freaks me out. I will happily share my concerns and questions with friends who have absolutely no idea what I'm talking about (TNF blocker whaaaa?), but ask me to sit in a room with 10-12 other people experiencing the same symptoms and possibly taking the same medications and I will cling to the door frame and refuse to leave the house. I write a Crohn's blog, but I am hesitant to talk about Crohn's in person. COMPLICATED!

 

To try to sort out my feelings about support groups, I googled "are you ready to join a support group?" which was like the 10th most popular answer after "are you ready to have a baby" and "are you ready to quit smoking." Here are some questions, adapted from here:

 

Do you enjoy being part of a group?  If that group bakes cookies and wears yoga pants and       watches "The Breakfast Club," then yes. If I am required to talk about FEELINGS, then no.

 

Are you ready to talk about your feelings with others? See above.

 

Do you want to hear others' stories about their Crohn's? No. Maybe. Scary. Run away!

Would you like the advice of others who have gone through different Crohn's treatments? Yes.

Do you have helpful advice or hints to offer others?  No:(

Would reaching out to support other Crohn's patients make you feel better?  Sure?

Would you be able to work with people who have different ways of dealing with Crohn's? You mean people who shun drugs and only eat south growing tree moss and think I'm DOING IT WRONG if I don't follow their strict moss recipes and refuse to CURE MYSELF with their forest based diet? Then no.

Do you want to learn more about Crohn's and treatment issues? Again, maybe. Scary. Run away to the forest for post group moss collection!

Ok! After taking this quiz I sense some ambivalence about the support group experience. Actually, let's call it what it is: fear. I am afraid of making the existence of my Crohn's any more real than it already is (i.e., by talking about it), or seeing someone who is struggling with advanced disease. That would be kind of devastating. I don't want to see what may or may not be in my future.

At some point, I think it would be a healthy thing for me to face my fear, put on my grown up lady pants, and make some connections with people who are like me-who have Crohn's. If/when I do so, here are some questions I would ask:

1.) How the hell do you hold down a full time job and deal with an unpredictable colon?
2.) How the hell do you hang out with babies (germy, germy babies) without getting sick? I always get sick from baby germs.
3.) How do you turn off the constant worry?
4.) What are your tips for being a better family member/friend when you feel like crap all the time? 
5.) Have you tried tree moss? Was it helpful? (kidding!)
6.) What do you think of delaying a taper off steroids so the decrease in dosage doesn't coincide with Thanksgiving, which would allow you to eat a greater variety of foods?

That last one is topical, but the rest are pretty timeless. Maybe someday I'll get a chance to ask them, in person, away from this blog. Face to face.



Post #76: Bear caregiving 101

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

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

 

Dude, I would STEP AWAY.

 



Le Prompt: Write about your advice for someone caring for a patient with your condition

 

Oooooh, nice one daily prompt! I feel like half of these prompts are list making filler posts, and then BAM, they hit you with an emotional jab to the kidneys.

 

Remember yesterday, when I said I had a hard time accepting help gracefully? No where is this more apparent than in my relationship with my caregiver. When I'm feeling sick, I'm like a wounded bear-I don't want to see or do anything, I just want to hunker down in my bear cave and make piteous bear moaning sounds and be alone with my pain and discomfort. I don't want anyone calling the bear cave with cheerful life updates; I don't want anyone stopping by to have a chat and some bear tea. I just want to curl up into myself and shut out the sights and sounds of the outside world. If you poke me in this state, if you try to have a conversation or ask me if I'm feeling better or try to give me bear advice, I will probably growl at you and chew on one of your limbs. It's not an attractive quality, this lashing out, but it's all that feels right sometimes.

 

Doesn't this make me sound fun!? I'm not always like this, of course, just like I'm not always in the midst of a flare. But on my worst days, sometimes I just want to be left alone.

 

My caregiver provides me with many useful things: Gatorade, new magazines, emotional support....and, after an adjustment period, space. We use a lot of "I'm feeling______" statements to avoid confusion and frustration. In the beginning, I took the support I was receiving for granted, and didn't focus on the effect my diagnosis was having on my caregiver. With the perspective of a few months time, however, I can see that we share many of the same frustrations, and I can appreciate what a gift it is to have someone who cares enough to, well, care for this bear of a Crohn's patient.

 

If I were to give out advice to other caregivers, based on my experiences with my own, I would say:

 

1.) Get some support. Take care of yourself; find someone to talk to.

 

2.) Educate yourself. Ask to go to doctor's visits, if your patient allows. Understand what treatment options are available, and their risks/benefits.

 

3.) Be patient. We're going through some shit-we may need extra time to process all of our FEELINGS, or make decisions about our health. Our disease is unpredictable, and our emotions might be too. Give us the time and space to make the choices that are right for us and figure things out on our own.

 

4.) Don't feel the need to be relentlessly cheerful or uplifting. It's not your job to be Captain Sunshine.

 

5.) Be supportive, but don't nag or preach. Look, we know we need to take our B-12 supplements. Picking up some extra at drugstore so we don't run out? Supportive. Placing a variety of B-12 pills in our lunchbox? See bear attacks, above.

 

6.) Realize that as much as you can learn about this condition, you will never know what it's like. You can empathize, sure, but we are experiencing painful and unpleasant symptoms for which you probably don't have a frame of reference. Respect that, and don't try to minimize our experience.

 

7.) Take our lead when disclosing our condition. Are we shouting our diagnosis from the rooftops? Great, you can include it in the Christmas newsletter. Are we only telling close family and friends? Then you probably shouldn't tell your physical therapist, barista, bank teller, or dry cleaner.

 

8.) Take advantage of the good days. If we're feeling great, it's a good time to go on a field trip. Pick something you both enjoy and get out of the freaking house.

 

9.) Take time off. Look, no one signed you up for 24/7 house arrest. There is no one right way to be a caregiver, but neglecting your own needs is certainly not the best way to do it. Unless your patient is hospitalized or in dire need of your medical attention, taking time apart will be good for both of you.

 

10.) Tell us what you need. Really. Set some boundaries. Ask us for support. Ask for information.

 

That's not a comprehensive list, of course, but a good place to start. I think a lot of people hear the term "caregiver" and think of a mother taking care of her elderly mother, or a husband taking care of his elderly wife. That kind of care giving is all encompassing and often a full time occupation. 

 

The relationship I have with my caregiver is, for the most part, just a normal relationship, with the added bonus of some extra emotional support and encouragement. It's not all Crohn's, all the time. There are some physical needs, of course: I know this person will take me to get my colonoscopy in a month, sit in the waiting room, steer me towards the car, drive me home, and point me in the general direction of my bed. But on a daily basis, illness and Crohn's don't always even come up in conversation. What is vital is that I know that I have someone who cares about me enough to listen to my concerns, ask questions, act as a sounding board for difficult decisions, and sometimes just hold my hand. I am grateful for the unconditional support, and I offer it in return.

 

When I have the desire to growl and maim, I try to keep this in mind: I am lucky to have such a person in my life, and they deserve my respect and my thanks. That thought keeps the bear a little calmer.

Post #75: Fail better

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My strengths? Biceps and an excellent "Blue Steel." My weaknesses? Hair gel and, apparently, awkward posing.

  

Today's super fun times prompt: My strengths and weaknesses list post

 

Ha! I can't stop looking at that picture. It's like he's sexily inviting you to thumb wrestle. Getting back to business, I am a huge fan of making pro/con lists, which is really just another way of listing the strengths and weaknesses of a particular choice; so now I guess I'll make one about myself.

 

I started making the list, and I don't like where it's going (ha!). As a person or a patient, I don't think I fall so neatly into clean divisions: good/bad, strong/weak, right/wrong. I think I am constantly improving/falling behind, and I need to find new labels that encompass that movement. Thus:

 

I aspire to be:

A well informed patient. This means scouring the Internet (hellllllo, Dr. Google), scientific journals, books, magazine articles, podcasts....any resource that might offer new insights into this disease. It also means being organized for doctor's visits; keeping track of routine testing; and researching potential treatment options.

 

Patient. This is a tough one.

 

A good caretaker of my body. Even though my body doesn't always accept varied and nutritious foods, I keep trying. And I've been attempting to incorporate more exercise into my routine, even if it ups my nap time.

 

A strong medical advocate for myself. I've discussed this at length, but it's important to me to understand what is going on with my body, and what the potential benefits/side effects of any treatments might be. I seek out a lot of opinions, ask a lot of questions, and do a lot of reading, all to make the best, and safest, choices about my health. At the end of the day I am responsible for this body; sometimes, especially since my diagnosis, it often feels like an overwhelming and scary job. It would be easy (easier?) to just accept the directives of my doctor at face value, to take the drugs he recommends and ignore my misgivings, but I feel an overwhelming protectiveness that prevents me from handing the reins over to him completely.

 

Kind. To myself and those around me. Again, a work in progress; it's tough to maintain the social niceties when you are completely exhausted and depleted.  

 

I am working on:

 

Trust. Trusting myself and my doctor. I don't trust very easily. At our last appointment, he stopped what he was doing, and looked me in the eye. He poked my knee with a file he was holding, and said, quietly, "You need to trust me."

 

It's something I struggle with. I need to find a balance between blind acceptance and informed agreement, but fear is complicating and confusing every choice I make. It's not as easy as just trusting someone-or maybe it is. It's complicated. It's scary. I'm working on it. NEXT!

 

Humility. I don't know everything and I'm not the world's expert on, really, anything. Except my own body, which is why if you try to tell me I'm not experiencing something I am, I will head butt you.

 

Patience. How can this be on both lists, you ask? Well, there are good days and bad days.

 

Friendship. I have let this disease make me kind of a shitty friend. It's not an excuse; it's just the reason for my shittiness, and it's something I can improve.

 

Giving back.

 

Reaching out. This one links up with humility; I am not so good at asking for help or support. Giving it? Sure. Receiving it gracefully? Not so much.

 

 

Well, there you have it. A few of my qualities as a person and a patient. I feel like they could all be lumped together in one giant category titled: "Guess what? I'm HUMAN." but I'll stick with what I've got.

 

It's all a work in progress. Maybe what I'm getting at could be best explained by one of my favorite quotes, from Samuel Beckett:

 

 

Ever tried. Ever failed. No matter. Try again. Fail again. Fail better.

 

 

That has been my motto for the past couple years: try again. fail again. fail better. Suceeding is not the point; trying is. Call it what you want: persistance, strength, will, or pure stubborness. Trying again (and again and again) takes heart. Failure is just another opportunity to clear your vision, shake off the dust, and start fresh-the opportunity to test and prove that heart all over again.



Post #74: Minimum blogging effort-see below

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Welcome to my day!

   

Today's prompt: Create a comic strip about your health/life/community

 

Because it took me like nine hours to figure out how to turn a word doc into a jpeg, this counts as my comic "strip" and daily health blogging contribution. Pretend like more things happened in this very exciting representation of my day.....except the only things that actually happened between these two activities were a quick blood draw and a field trip to Whole Foods.

 

Fun times!

Post #73: We are better than this

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I AM A DELICATE SPECIMEN OF WOMANHOOD WHO NEVER POOPS. Haha, just kidding.

 

Prompt: Why healthcare companies (or healthcare professionals) should use social media

 

First: the prompt. I think healthcare professionals can use social media in a positive way.

It's a fine line for a healthcare professional to walk, in terms of maintaining a professional distance and offering potentially useful information. I don't want to be friends with my doctor on Facebook (does the man who performs my colonoscopies really need to know any OTHER personal tidbits? He does not), but I do check in on another doctor's twitter feed because I think he offers interesting and pertinent information. I think social media, in terms of Crohn's patient/Crohn's professional, should be used in this model: short bursts of information on current drug trials; tweets from medical conventions; links to interesting articles. It's a way to get current information from a source who is well versed in the subject and exposed to current research and scholarly discussion. Should doctors be dispensing medical advice online? Probably not. A twitter feed will never replace a physical. But it can be a way to inform, empower, and educate patients.

 

What I really want to talk about is this article. It has me all hopped up and rant-y. The author is discussing pooping at work (zzzzz), but she includes a few choice quotes about discovering how "taboo" a topic poop is while working in her college's theatre department:

 

"Because to be a woman and to talk about poop -- about anyone’s, but especially your own -- that’s subversive. It’s weird. It’s immature. It’s inappropriate. Those same senior girls in the theatre shop taught me a lot about being a modern feminist, sometimes engaging in serious debates about what being female even means, and conversations about sex and sexuality were explicit, positive, and frank.

 

Yet it was talking about shitting that had people in the costume shop up in arms. “You guys stop -- that’s so gross,” said a male coworker."

 

And later:

 

"As human beings, there are facets of our humanity that link us. I think it’s important, living in an age like ours that preaches connectivity but breeds isolation, that we remember these links whenever we can. We all poop, male or female, and perpetuating the idea that women don’t is hurtful to us, not just as a gender but as a people. I think about it the workplace most of all, especially when I read articles on the glass ceiling.

 

Its existence is one of those pernicious realities that rears up and hits me in the face every time. When I sit there worrying about equality and about the sort of world I might one day be bringing daughters into, it’s something I worry about explaining. “You’ll never make as much money as your brother, and a lot of people will think it’s weird or gross if you have to poop at work.”

 

The point of the article is that yes, everybody poops, and yes, woman should feel free to poop in the workplace, and that as women we are still sometimes ashamed of our bodily functions, as if they make us vulnerable or weak.

 

WTF.

 

I agree with the point of the article; what infuriates me is the fact that someone felt the need to explicitly state the obvious-that women do, in fact, eliminate waste JUST LIKE MEN-in response to cultural stereotypes about women and bodily functions. Also annoying? The author seems to want commendation for her candor. Look, lady, I'm glad you're talking about poop, I really am. But I'm not going to give you a medal for writing about such a big scary TABOO subject when in doing so you are unintentionally reinforcing the same tired stereotypes you hope to dispel.

 

I can't believe this is a topic that is still worthy of discussion.

 

I feel like we can't be normal about poop. I'm not saying this as a Crohn's patient, just as a lady about town. Women are herded into two camps; we can either avoid the topic like the plague and get the vapors when it is discussed, or cheerfully discuss our bowel movements in explicit detail. There is no middle ground-we can't simply be normal about our poop. This binary divide, as presented in the article, posits that to avoid discussion is repression; to embrace it, feminism. I don't buy it.

 

Look, I'm probably not the best example of the middle ground: you are, after all, reading this rant on a blog where I talk frankly about my Crohn's disease, which by its very nature necessitates a lot of conversation about poop. But I don't think that I am a bad feminist, or a bad representative for this disease, if I don't loudly and proudly detail my bowel habits so other woman can feel less shame about their own bodies.

 

There are, as the article states, many things that connect us as human beings. But let's get real: talking about poop is not necessarily an indication of connectivity of gender equality. It's not the last frontier of conversational acceptability. Yes, we all poop, some of us more than others (hi!). But knowing that doesn't make me feel more equal, or connected to, the guy sitting next to me at the DMV. Talking about it doesn't make me brave. And focusing on it does not tear down the walls of shame; it only reinforces the idea that there is still a wall that needs toppling instead of looking beyond the wall for topics more worthy of discussion. 

Post #72: When colons stop being polite.....and start getting real

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HAHA awwww......

 

Prompt: "My life as a reality show." Write characters, plots, the set, and why people should watch

 

Is that cat picture not the most appropriate representation of some of the uniquely invasive tests we (Crohn's patients, and I guess other super lucky patients as well) get to undergo? My favorite part is that the cat looks like a Muppet head, ha.

 

I have a colonoscopy coming up in a bit, so it's on my mind. Also, I know two people who are getting colonoscopies this week. SUPER FUN TIMES FOR ALL. I'm going to try the pill prep this time (as opposed to the "drink 9 gallons of this salty expired store brand sprite tasting" stuff)-we'll see if it's an improvement, although really, the process is not meant to feel like an internal shiatsu massage. Anyhoo.

 

I dislike the prompt for today: there are no child beauty pageant contestants or Amish teens hiding in my closet; I don't race around the world for money, and if it involves math I'm definitely not smarter than a 5th grader. Most "reality" TV is exploitative and staged; some of it is painful to watch.

 

My life is not a reality show: it's just reality. No one would be interested in my exploits, and I have no interest in sharing them. I am going to share a little anecdote that illustrates exactly why my life would make a craptastic reality show.

 

Today, the plumber came over to install a new toilet. Here's the timeline of events:

• 10:00: plumber calls to say he'll be over in 30 minutes.
• 10:01: have a last BM in old toilet. Thanks for your years of trusty service!
• 10:03: Obsess about previous action. Decide I probably should have used another toilet.
• 10:04: Flush repeatedly; no detectable odor
• 10:05: Ignore stomach rumbling, hop in shower, get dressed, don yoga pants (of course)
• 10:20: plumber arrives early. Is talkative. Consider other toilet options.
• 10:30: plumber wants to talk about politics and what "my generation" thinks about the election. Are we hopeful about the future? Which party do we think best reflects our concerns?
• 10:40: plumber brings up wet vac to vacuum up toilet water. Excuse myself. Pray for thorough flushing.
• 10: 45: old toilet is carried down the stairs. Obsess about potential toilet germs leaking onto the carpet. When I confess this to the plumber, he says, "Most toilets aren't as germy as we think they are!" I think, IF ONLY YOU KNEW, cheerful plumber. If only you knew what goes down in there.
• 11:15: new toilet installed! Is shiny and new and clean. Plumber wants to do a toilet paper test to gauge flush strength. Puts in a measly three squares of toilet paper. I innocently suggest a move robust test. He puts in three more. I raise an eyebrow. Three more. Eyebrow. Three more. Eventually the bowl is filled with toilet paper. It flushes. I breath an internal sigh of relief.

 

Now, this was about an hour in my morning. Was it interesting to you? Because it wasn't that interesting to me. Besides having a super nice (and inquisitive!) plumber, most of the action occurred in my head. This does not translate into ratings.

 

So, since my reality show is a no-go, allow me to share this bit of wisdom from the plumber. As he was conducting the flush test, he asked, do you have a small glass jar? Naturally, my mind went immediately to the bad place, and I thought, dude, if you need to pee we have OTHER OPTIONS. Seeing my side eye, he told me about the toilet paper test. First, you need a jam jar or other similarly sized, sealable container. Fill it with water. Then take three sheets (squares?) of your toilet paper,  place them into the jar, and shake vigorously. If the toilet paper dissolves instantly, it is septic safe and probably not going to cause any blockages. If it doesn't, your ass needs to get some new TP.

 

The more you know (shooting star......). I'm pretty sure my one ply, recycled, non-bleached toilet paper would ace that shit, but I'm not so sure about my beloved moist wipes. We will have to see how both fare in the new, low-flow (shudder!) toilet.

 

Tune in tomorrow for another exciting (sarcasm!) installment of "Real World: Digestive Tract."