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 #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 #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 #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 #43: I took a break, buy my Crohn's didn't

This is what you get when you google "Crohn's flare." Assholes, like I could eat this shit even if my colon were not inflamed. Also, why does the frosting look like mashed potatoes? Ugh.

The title of this post should be sung to the tune of "I fought the law and the law won." Totally stuck in my head now.


Yeah, so, oops....haven't posted in a while. I was on vacation and even though I had internet access I didn't want to talk about my AAC. So sue me.

Before I left, I had a non-religious "come to Jesus" meeting with my gastro. Within 60 seconds of shaking his hand and starting to discuss my digestive business, I burst into tears, per usual. On the one hand, it's embarrassing that I can't make it through a single appointment without doing the ugly cry, but at this point I've kind of stopped trying to fight the FEELINGS. Whatever. It's not like he usually delivers good news and then we play with puppies the whole time. Shit is stressful.

After a lot of obsessing, denial, and stalling (3 month taper, anyone?), I decided to go on the meds I was hoping to avoid. It's time to give them a try. A few things became abundantly clear during my meeting.  My gastro broke it down: what are your goals for the next six months? I said I wanted to go back to work. He asked why I wasn't working (I took my leave of absence a while ago, and technically could have worked this quarter), and if it had anything to do with Crohn's symptoms. At first, I was like, no silly gastro! I'm taking a BREAK. I'm RELAXING and GETTING BACK TO NORMAL.

And then I realized: no I'm not. I'm doing exactly what I was doing before-piecing together an existence based around unpredictable symptoms and pretending that EVERYTHING IS FINE. But everything is not fine. Having 1-2 bad days a week, that kind of take me out of commission for a morning/day, is not fine.  I realized that in my current state, I couldn't go back to work with any degree of confidence. As my gastro said, so kindly, "I really don't think your symptoms are as under control as you think they are."

For a long time, during this period of tapering and should I/shouldn't I take this drug thinking, I assumed that I would get a black and white picture of the situation and would be able to make the right decision accordingly. Unfortunately, there were no fortune cookies with "TAKE THE FUCKING DRUGS ALREADY" fortunes, or long spaces of symptom free days where I picnicked in alpine meadows and communed with all that was natural and bright. It's been an in between, not that great, not always terrible, middle of the road kind of deal. I was so worried about making the right decision that I didn't make any decisions. I watched a great Crohn's round table thing online (wish I could find it again, would totally link to it) where a doctor said he tells his patients that the medicines they are taking  are "forever for now." New drug therapies are in development, symptoms can change, situations can change, and the drug you take today might not be the drug you take for the rest of your life.

I think that is what was holding me back: I had to be SO SURE about this decision because I would be on this drug for the rest of my life-but that's not necessarily true. And that flexibility is freeing. I like my gasto's approach: what are you goals, and how can we get you there? The goals will change, and the medicine might have to change as well. I've got to start somewhere.

Unfortunately, I have had a cold for the last week and a half, so I don't think I can start this drug right now. I'm going to call my gastro's nurse on Friday to check, but I'm still coughing up green shit so I think it's a no-go (and you thought this blog was just about POO).

I'll update soon-right now, it's time to watch the Olympics even though I know how it all turns out THANKS A LOT CNN. Things that are awesome: the hilarious England-themed jumps for the horses, sparkly spandex, hurdles. Diving and Olympic kayaking (?!). The fancy water polo baby caps. The super excited parents in the stands. AMERICAN BEACH VOLLEYBALL SHOWDOWN. I love this shit.

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).

Post #39: Thirsty girl

Lady, I hope those are all filled with vodka, because that is the only excuse for that outfit. Also, I enjoy your fancy headband and "welcome to the gun show" pose.



One. more. day. One more day of steroids and then I am back to where I started. I'm not sure that I'm in remission anymore, but then again I'm not sure I'm not......I guess I'll find out the old fashioned way, which is to stop taking drugs and see what happens. This is not the fun kind of suspense, like waiting for college acceptance letters (although that wasn't fun either), or watching Law & Order and trying to guess who did it (although I always guess), or watching elimination night on American Idol (which I don't do, because I'm not 12). Hey guess what? I DON'T LIKE SUSPENSE, especially when it has to do with my health. Nothing good can come from having a surprising colon. I'm just saying. I feel like that should be a t-shirt, or a bumper sticker at the very least. In my head, I picture a colon hiding behind a tree and jumping out at unsuspecting tourists. Eventually, some poor guy from Kansas will have a heart attack, and then I can say, SEE? No one enjoys a surprising colon! Officer, arrest that organ.

Anyway.

In my vast experience with Crohn's (vast being two seconds worth of useless expertise), I've found that part of the disease is playing lab rat (calm down PETA, they're testing all of this shit on me). I've been on steroids for 5 months now (yikes), in varying doses, and random other medicines before that, and while I understand that there is trial and error involved in finding the right medication for the job, it seems like I spend and awful lot of time shoving random chemicals down my mouth and waiting to see what happens, or coming off those drugs and waiting to see what happens. The whole process feels less like a calculated scientific endeavor than a birthday party game where the doctors and naturopaths blindfold themselves and randomly roam through a pharmacy, picking pills at random (that would be a fun birthday! note to self, call Walgreen's). So I guess the waiting game begins anew.

The reason for the delightful picture above is that I think part of the reason this week was so crappy (yes, yes, I know, all of the slang for "bad" is related to poo: crappy, shitty....well, those are the only two I can think of right now) is that I was dehydrated. It's very hard to hydrate yourself when you're trying to stay away from Gatorade, which I am, because I could sooooooooooo jump back on that delicious, delicious lemonade flavored wagon. The other problem, as explained by my nice naturopath and the rakish doctor at urgent care who pumped me full of three litres of fluid (ha!) a few months ago, is that when you're having a lot of diarrhea, and your AAC is inflamed, it's hard for your body to absorb water anyway. You can drink water until the cows come home, but if you're body's not absorbing it, you're not really solving the problem.

I can usually tell when I'm dehydrated-I get leg cramps, get dizzy when I stand up too quickly, and get super emotional (because, you know, it's not like I need to keep the water IN MY BODY). Looking back, this week met all of those criteria, but with the help of some Imodium I got myself back on track. However, if I had gotten my ass in gear, I would have gone to get rehydrated. If you've never been rehydrated before, let me explain how it works. You go in (to your naturopath's office, in my case, or to urgent care or the ER or wherever) feeling sick, and sluggish, and depleted, and they pump delicious saline into your veins, and suddenly peace and calm and coolness and rainbows (and, um, water) flow through your body. Your brain, which was stuck in anxious panic mode, relaxes. Mental clarity returns.

Once, when I was teaching, I was having an awful symptom day, and I scheduled a last minute appointment with my nice naturopath to get some hydration. He has these mini bags that take a half hour to drain (the bigass ones at urgent care or the ER take longer, although it also depends on how dehydrated you are), which he usually uses to deliver vitamin cocktails, but I take mine, in his words, "straight with no chaser." I came in crying (I always cry at the nice naturopath's, always) and nauseous and tense, with a headache and a general weariness with life. A half hour later, and it was like someone had doused me with normal person healthy juice. My brain started working at a normal pace again, my headache was gone, I was hungry. I went to work and was able to teach class with actual focus.

In Las Vegas, they have this bus that roams around and rehydrates drunks. Observe:



Really, it's a thing. You get on, they hook you up with fluids/vitamins/probably some spiked redbull shit, and in an hour or two you're good to go. If they had this where I lived, I would totally go, although I might swish with some vodka first so I could fit in with the cool kids.

When I was in high school (probably after a cribs marathon), I was adamant that if I had a mansion someday I would put a Subway in the basement and keep it staffed 24 hours a day so that whenever I had a craving, I could EAT FRESH. To that ridiculous list, I would also like to add one of those exercise swimming pools with a current you have to swim against (I think they're fancy) and a rehydration bus. Or minivan, I'm not greedy. Who needs Gatorade when you have an asston of saline at the ready?!

Post #38: This post is brought to you by the letter "I" (imodium!)

Doesn't this look wholesome? Also, the only thing I can eat in this photograph is the tablecloth.

I was really emotional when I wrote the last post-I think it's because I'm sad that I only have four days of steroids left (sob). Yesterday, I was having cramps and a lot of diarrhea, and I had a haircut appointment. I have short hair, which actually means I need haircuts more often, or my hair gets shapeless and frizzy. A few weeks ago I encountered a really pissed off baby robin (it was in the middle of the street, so of course I had to get involved. I poked at it with a flip flop I found in my car, which it attacked, but eventually it kind of hopped/waddled into a ditch). The bird was at an in between feathers stage-out of his (her?) big boy bird feathers, these little downy feather strands were poking up at odd angles, which is kind of what my hair looks like between cuts. It's less defined and looks messy. There are women who get their nails done each week, who tint their eyelashes and wax their lady parts and shoot toxins into their laugh lines. To each her own-I like to get my hair cut every month, and if I don't, I get kind of twitchy and do dumb shit like try to cut it myself, or wear unfortunate hair clips.


I really wanted to go to that appointment.


So I took an Imodium, waited at my house as long as I could, grabbed a plastic garbage bag in case of emergency, and booked it to the salon. An unfortunate start to the morning, but at least I didn't have an accident (of either the vehicular or colonic variety). My AAC is so freaking unpredictable these days; I used to get a rest day between explosions, but it's been pretty much every day this week. Imodium is also kind of tricky-too much can slow things down to the point of painful constipation, and too little might mean you poop in the car. Imodium pills are also really small, so while you an cut it in half, anything smaller means you end up with minty green colored pill crumbs. Basically, I think I took too much yesterday, as I was in a hurry to shut off the faucet and get out the door, but I have a feeling I'll pay for it eventually.


In the next two days, I have more appointments, and while I specifically scheduled them for the early afternoon, there still might be a few stressful rounds of "can I or can't I leave the toilet?!" that I have to play. There are times-say, when you're in the dentist's chair, getting a cavity filled-that you just want your AAC to cooperate, and where you don't want to grab a garbage bag and a change of clothes and go merrily about your business.


The weirdest part about yesterday, as I grabbed my keys and headed out the door, was that I made the choice to venture out into the world in the midst of an AAC freak out. I decided that the thing I wanted (a haircut) was more important than the reality of the situation, which was complete unpredictability. It's not often that the scales tip that way.


Today I got a call from a work friend, and it reminded me that in September, I have classes to teach. I have what you could consider daily appointments with my students. It's one thing to roll the dice with a trip to a salon; another, to do the same and have to stand before a group of teenagers.


I know I'm not ready to go back to work yet. Hopefully, whatever intervention I choose next will give me more options in September than grabbing a hefty (ok, Costco brand) bag and hoping for the best.

Post #37

Dude, if they actually printed snarky, hilarious taunts on toliet paper tubes I would have SO MUCH MORE FUN in the bathroom.

Hey guess what? I have Crohn's. You might be thinking, well, you have a BLOG about it, and you bitch about it on the aforementioned blog all the time, and you have a stable of doctors and assholish naturopaths telling you what to do about your AAC, so.....yeah. In other news, Starbucks is expensive sub-par swill and Tom Sellack has manly chest hair. I'll take things that are obvious for 800, Alex!


But even though those doctors have been officially calling it "Crohn's" for about 7 (!!!) months now, you have to remember that I have been dealing with a finicky colon for over 10 years. Even now, a part of me thinks, well, maybe this is just really bad IBS. Maybe it's a phase, maybe it's an allergy, maybe it's an infection, maybe, maybe, maybe....except: it's not.


I have Crohn's.


Today was a really bad day. Correction: today was a truly awful morning followed by a bad day. Not IBS bad. Crohn's bad. I have five days before I'm off the steroids. As I was running back and forth to the bathroom, this reality slapped me in the face: soon, my last pharmaceutical crutch will be removed, and I will be on my own with what is shaping up to be one very, very sick, unpredictable, AAC.


I am scared.


I am scared about the drugs I might need to take, and the side effects of those drugs. At the same time, I'm afraid that those drugs won't work, and I'll need to take scarier drugs. Ones that require transfusion alongside the chemo patients. Or ones that you inject into yourself at home. There's a "treatment pyramid," that ranks the various Crohn's treatments on a scale, from least to most toxicity. I've been at the top of the pyramid, afraid to go down. Now, as reality sets in, I'm afraid of how far down I'll have to go.


I have Crohn's, and I am scared.


All of those nourishing, safe-ish foods I was bragging about last night? Today my body couldn't get rid of them fast enough, purging them from my system, twisting my gut into painful knots (note to self: add grape tomatoes to the list of doom). The rest of the day was spent in a zoned-out haze. A  nap was taken. Fluids were consumed. My legs were cramping, and I didn't want to use the secret bottle of Gatorade hidden in my trunk, so I tried coconut water instead, hoping to get in some much needed electrolytes, the natural way! Unfortunately, coconut water tastes like regurgitated pond scum, so I ate a banana instead. It helped a little.


I feel sick and tired and apprehensive. I don't want to get off of the steroids, but if I need them, what does that say? It doesn't take a genius to realize that if a high dose of steroids put you in clinical remission, and a low dose brings back some (ok, a lot) of the symptoms of active disease, it's time to choose a stronger medicine you can stay on for the long term. This was what tapering was supposed to be about, although in my head it went a little differently. Instead of pointing to the need for actual drugs for my actual disease, I would be steroid free and driving to vacation in a red convertible (don't own one, but maybe that was my present for being symptom free! I'm very generous like that), stopping at each vista on the coastal highway and maybe taking a sexy al fresco bath on the beach, like in the erectile dysfunction ads.


Reality is biting me in the ass (which is already getting enough action, thank you very much). Tapering was supposed to buy me time to adjust to whatever the next steps needed to be-I just never fully reconciled myself to the fact that the next steps would be anything other than getting on with my life in a normal fashion. But I have work, and a long car trip, and a vacation, and somewhere in the background a normal life I haven't been living for far too long.


I have Crohn's. And it's not going away. And I need to decide, after a few months of respite, how I'm going to live with it.

Post #35: A comprehensive report, from top to bottom

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

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

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

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

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

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

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

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

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

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

Post #33: Story time with PICTURES. oooooh.

 Let's have a story with PICTURES!

Intro: Once upon a time, a friend came over with the following:

  +  +

She mixed together the first two ingredients, and then gently spooned the mixture into fresh, organic, basil leaves for a light, gluten-free appetizer.

It looked like this:

 

All I could think was, this is like vegetarian caviar! And we're so fancy, eating it out of HERBS.

Ok, not that fancy-there were flip flops involved. But! Eating delicious food, socializing-it felt nice, and normal. I was already planning on making the dip for a garden party cocktail thing, if I were to have one of those, for some reason.....

And can we talk about lentils for a second?? I have been avoiding high fiber foods and foods with an outer, undigestible "skin" (beans, corn, lentils). I read one IBS/Crohn's cookbook that suggested removing these "skins" before cooking-but the thought of standing over the counter popping chickpeas out of their casing was too depressing to contemplate. But yesterday, I remembered how much I miss TEXTURE. The slight bite of the outer shell, the creamy, smooth interior, the musky, smoky taste of the lentils....

I ate a lot of it. For lunch and dinner.

And then this happened. In this picture, the bridge represents my colon, and the runners represent the lentils. It wasn't this exciting, and it didn't take 5 hours to complete (actually, it kind of did), but everyone did make it to the finish line! And off the bridge. If you get what I'm saying. I think you do.

And then I took a 3 hours nap, drank a lot of fluids, and felt sorry for myself.

THE END.

So, what did we learn from this encounter? Lentils and fiber and "skins," oh my! All things that make my AAC....angrier. As I continue to taper, and pretend things are stabalized, I somethings forget that there is a new reality. I can't let myself get fooled by a few good days. There are foods that are definitely more off-limits than they were. A bunch of freaking lentils sidelined me for an entire day. I'm exhausted.

I guess lentils, for now, go on the fuck you food list. Lentils, I'd like to introduce you to fried foods, red meat, cruciferous vegetables, dairy, excessive amounts of avocado, black beans, high fiber cereals, and Indian food. I hope you're all very happy together, because you're making me miserable.



Post #32: My yoga pants are pretty tight....



Is there no option C??

Quick update: taper taper taper taper, super tired, taper taper taper.

Now you're all caught up.

In other news, I have lost my give-a-shit. I wear inappropriately tight yoga pants to the grocery store. I watch TV all day. I eat the same foods over and over because I'm too lazy to try new things. I don't wear makeup, even when I had what I am convinced was a small boil on the side of my face. I get irritated if I have to wear real pants. I have a somewhat relaxed attitude towards bathing (still mostly every day, it's not like I'm living in a pit of my own filth). I shaved my legs for the first time in a month yesterday, but only because I was bored.

I wouldn't call this depression. This is more like focused exhaustion. If I'm not going anywhere, and I'm tired, why should I wear real people clothes? I should save that energy for things like meal preparation and reading TMZ. I COULD moisturize, put on sunscreen, dab on coverup, set with powder.....or, I could use that energy to go to the grocery store with my giant boil shining like a beacon, and hope that my long bangs cover that mother. Again, I just don't give a shit.

And yet, I know I need to marshall up some give-a-shit, because I need to take care of my AAC. I need to make doctor's appointments and get blood work and get a bone scan and start taking my freaking vitamins and come up with a plan for when this taper is over (in about 2 weeks). There are a lot of out of town guests coming. I need to send out late birthday presents. I'm going on vacation for 2 weeks. Eventually, I have to go back to work.

But I am so tired.

In the past two days, I told two people I had Crohn's, and talked about it with a relative, and they all said the same thing: aren't you lucky that there are so many good treatments out there for Crohn's? One talked about her friend's son getting infusions every few weeks. Another, who is a pharmacist, said, "well, there are so many good tools on the market." A third told me about her friend who had Crohn's and had just had a baby, and how when she finally found the right medication she "got things under control."

If my give-a-shit was in full force, I probably would have been all uppity and annoyed about their cavalier attitude toward my colon-just take a pill, all will be well! But part of me wonders if all of this medication avoidance is a futile pursuit, and if I shouldn't just take the freaking pills.

If anyone has seen my give-a-shit, let me know-I need it to make some important decisions.

Post #31: Is there such a thing as colon yoga?

Annnnd push all thoughts about your ulcerated colon away......

All of the blogs/online articles/waiting room liteterature/books about Crohn's talk about stress relief. I think this is mostly because there aren't too many proactive things you can do about your Crohn's, so the literature throws us a bone: "Although it hasn't been proven effective in alleviating any of your symptoms, it hasn't been disproven either! So bust out the yoga! Meditate! Relax! It's not as though you have a chronic autoimmune.....oh right."

For a long time, when dealing with my anxiety, my body often clued me in to what I was feeling long before my brain caught on that something was amiss. My posture would change; my shoulders would ache from being clenched all day; I would find my hands curled into fists even though I felt calm. Back when I felt more attuned to my body, I would notice these postures, and recognize them for what they actually were: physical manifestations of emotional turmoil. Now, my body sends a lot of different signals all the time. It's hard to weed through the symptoms and pain and, think, aha! My body is tense. What is the source of my anxiety?

Of course, with the Crohn's, there are many obvious sources of anxiety, and scenarios that invoke worry and concern. Recently though, with the steroids still on board (yes, still tapering), I have been able to seperate, to some extent, some of the colon anxiety and some of the life anxiety. And as usual, the anxiety starts in my body.

Some examples: recently I had a super stressful hour long phone conversation. I realized I needed to divert my brain and blow off some steam, so I headed to my craft shack (dining room, whatever). I was sitting there, fiddling around, when I noticed that my ear was killing me. I thought, great, on top of all of this shit I now have a raging ear infection, and I'll have to take antibiotics, which will further piss off my AAC, SUPER AWESOME WHY IS THIS HAPPENING NOW. Scowling and muttering obscenties under my breath, I started to massage my ear when I realized......my jaw was clenched. And it had been since the conversation, an hour earlier. The pain from my jaw had travelled all the way up into my ear, and all the way down to my neck. As soon as I started to open my mouth and stretch my jaw, the pain went away.

When I fall asleep, I find that one of the most comfortable positions is to wrap my arms around myself under a few layers of blankets-and I stay in that position all night, holding on to myself, buried in sheets.

Since I started to notice these things, I also noticed that throughout the day my shoulders inch towards my ears, in a kind of perma-hunch, like an arthritic turtle trying to get back into his shell. It's been a constant new mantra: shoulders down, head straight. As I go to and from the bathroom: shoulders down, head straight. As I check email: shoulders down, head straight.

I think I might need to try some of this relaxation business.

Post #30: CONSISTENCY IS MINE! (on this blog)

In honor of my 30th post! You can eat it in my honor. Huzzah!

So, 30 posts! I am impressed with my own consistency here. And as you know, I'm a big fan of consistency.

As the taper continues, my bowel situation is not improving. I'm having more cramps and more pain. I knew the taper was about buying me time, and I feel like that time is running out. I've been putting off making the doctor's appointment (with my real doctor in a real hospital who doesn't tell me I'm going to explode if I sniff bakery dust) where I'll plan my next move.

Since I spent so much time talking about the horse I didn't pick (asshole naturopath! *shaking fist*), let me tell you a little about the one I did. Let me preface this description by stating that I must be kind of a nightmare patient. I am over-prepared, nosy, and suspicious. Now, some of these are commendable qualities, but I think there is probably a limit I exceed in terms of doing my own research and forming my own opinions. This is because when I am afraid or overwhelmed, I collect information. I'm not talking a quick google search (although I do that too), but more of a comprehensive medical journal literature review, with articles highlighted, collated, and organized by year. yikes.

Back to my horse of choice (HOC). I come to every appointment with a list of written questions (I am such a nerd). I like to go down the list, and then have a discussion about next steps and recommendations. I have never had a doctor reject/mock the list (to my face). Most doctors say that it's helpful and refer to it throughout the appointment. I prepare for my appointments because I know I have a limited amount of face time with my doctor, and I want to get all of my questions answered. I know that this is a positive/proactive way of dealing with the situation, but there is always a part of me who dreads being "that patient," the neurotic, difficult, overbearing know-it-all.

I've talked about it here before, but I think women are conditioned to respect medical authority figures in a way that is not always conducive to their personal health. This is a broad, sweeping generalization, but I know that I often feel like I'm overstepping my bounds if I ask too many questions, or disagree with a suggestion, or seek a second opinion. Intellectually, I know these are smart choices, but emotionally there is a fear of seeming like a crazy harpy. I do respect my doctors-and I know they did not go through medical school/residency to be second guessed by an overly confident wise ass with a penchant for googling. At the same time, I don't think it's wrong to ask about a less aggressive form of treatment, or see what all of my options are. At the end of the day, I'm the one who has to live with these choices, face the consequences, and deal with the side effects-so I'm the one who has to ask the questions, do the research, and find a doctor who can educate me about my options.

My horse of choice (HOC) is just such a doctor. He is smart, but more importantly he's......steady. That's an appropriate way to describe a horse, and a weird way to describe a doctor, I know. But he is calm and capable in a way that inspires confidence and trust. In our next appointment, when I am drug free, I am going to have more decisions to make. It will be difficult. But while I am nervous and cracking jokes to make myself feel better, I know that my HOC will quietly absorb the information I present, and give me his honest opinion about what to do next. I know that he will not be condescending, or try to intimidate me into choosing an option that doesn't feel right for me. And that, if nothing else, is comforting.