Saturday, October 31, 2009
And actually, Buddy has had a pretty good week with some progress. Since I no longer have the excuse of not being able to wander more than 1/10th of a mile from the nearest restroom, we're back on our 3-times a day, short leash, no marking, Cesar-approved walks. I don't know what it is about this walking routine, but it seems to chip away molecule by molecule of the nervous energy that floats around this dog. While I was sick, Buddy had regressed back to soiling in his crate, tearing his poor schnozz up on the lock mechanism on the crate, and barking so hard that the entire vessel practically ends up in another room by the time it's all done. This week was a good week. Clean crate, nose is healing and, the hallelujah moment of the week, one day where I pulled in to the driveway and heard silence. I know our journey is going to be one of three steps forwards, one poop-filled crate step backwards... but this week? It was a good one.
So I digress, but that paragraph actually has some relevance to my evening. It's 5:30 and I'm sitting on the couch, watching I Didn't Know I Was Pregnant (yes, I judge me too) when the first doorbell chime sounds.
An adorable Superman and Hannah Montana await with pillowcases open. TREEK OR TWEAT!!! they holler up at me. I graciously drop 2-3 kitkats into each open bag. Buddy pants hard at my side.
Each set of visitors escalates his energy. By the time the doorbell goes off for the fifth time, Buddy shoots up from his spot in front of the blue couch, barrels towards the door and runs smack into the table of the foyer instead. As the tricksters walk away, he is running circles around the house awaiting the next one.
DINGDINGDINGDINGDING. What on EARTH. I'm starting to wonder if our doorbell is made of play-doh, because these children seem to enjoy MASHING it with some serious fervor.
As the stream of visitors increase, I start scrutinizing costumes. Let the cynicism begin.
A flannel shirt and jeans? Don't try to tell me you're a farmer. The least you could have done was stuck a toothpick in your mouth. (Wait, is that a safety hazard?)
A pink hoody that says GIRL POWER on the back? Listen, I grew up with Spice Girls. You had 5 different directions to take this in.... wearing their SLOGAN does not count.
And the girl in the black leggings, black knee high boots and tunic dress? Unless you are going as Meghan's Bad Decisions From Forever 21..... you do not deserve my candy.
I became more cynical about this holiday as the night wore on and the doorbell continued to ring AT LEAST THREE TIMES IN SUCCESSION, every time. Seriously, kids. Press. It. Once.
Those of us who stay home and pass out candy should always be allowed to have at least one beer.
And can I mention how many of these children did not even SAY Trick-or-Treat? OR THANK YOU????
I had intended to leave to go to Anne's around 7:00, but the slew of doorbell mashers kept me hopping. Finally, around 8:00, I swiped on some mascara and ran the Chi over my hair. (Serious efforts, folks.) As I turned to grab my coat out the closet, I nearly tripped over my panting, agitated canine who had positioned himself squarely behind my kneecaps. Hoo boy.
I grabbed his collar and we headed over to his crate. Suddenly, I found myself dragging 26 lbs of dead weight. Panting, drooling dead weight. Crap.
Matt told me recently that Buddy had been doing this drop-butt move right before he gets to his crate. He said that he just waits it out, talking calmly to him and eventually, he'll gingerly step into his crate.
Well, Cesar Cline, can you share with me some of the Quaaludes you must be slipping him too?
My calm talking did nothing to budge the furry bundle in my hand. Eventually, I did what anyone with the 103 pound advantage would do, and picked him up and pretty much pushed him in the crate. As I closed the latch on his nose, guilt washed over me.
"Shake it off, Megs." I consoled myself. "He's a dog. He stays in his crate all the time. He'll be fine."
DINGIDINGDING... PRESS IT ONCE YOU LITTLE PUNKS!!!
I'm pretty sure the Lake Michigan of Urine I had to wipe out of the crate later was released at this exact moment. By Buddy or me, I cannot say.
I passed out my last handful of candy and tried to figure out how to turn off my porch light. (I was not successful, and I hope that when I re-read this later it will remind me to ask my husband how on earth we turn off our porch light? There are eight different switches by the front door, why do none of them control the porch light?)
In to the car I went, consoling myself that he's just a dog and he'll be okay. And by consoling myself, I mean eating at least 3 of the Heath bars I smuggled from the candy bowl before I left.
I drove through my neighborhood and was surprised to see many more goblins, ghouls, and one Octomom (8 baby dolls glued to her, YOU GET HEATH BARS FOR CREATIVITY, GIRL) headed towards my house. I thought of my welcoming porch light. "I guess they'll figure it out when I don't answer," I thought.
A mile from my house is a round-about to get on the highway. I found my car going around the circle, my finger on the cell phone calling Anne. I couldn't do it. Visions of my doggy locked in his crate with multiple DINGDONGDINGDONG ditch going on tugged at my heart. I thought of the great week the Budster had had. I thought of how much I wanted to see my friends. I felt torn, and it felt silly and stupid to be turning around on seeing my friends for the sake of a possibly agitated dog that needs therapy anyways. But round the circle my car went, and soon enough I was back in my garage.
I wipe out the crate and I shook my head at my little furry guy running circles around the house in confused delirium and gulping water like a drowned man would oxygen. Seriously, I think I was gone for 3 minutes. Oh, good gracious, this sweet dog brings me so much joy but in the same swipe, he brings frustration, guilt, and even occasionally resentment. (And then guilt for that resentment, eh?) There are the good days when silence settles in the crate, and then there are days when you drive away listening to the barking wondering if you are doing the right thing. And then there are Saturday nights when you're parked on the couch watching Suze Orman (because at least that feels slightly less brain degrading than the mess on TLC), with your flat-ironed-effort hair going to waste, wondering if you're being silly or mature by coddling a dog's neuroses over your own selfish pleasure. Trick or treat? That is for sure.
So, it was a disappointing Halloween but what can I say? I'm sure, in the big picture, that one night of doorbell ringing would not make or break my separation anxiety bootcamp. I probably should have sucked up the guilt, and gone to see my friends. I missed them, and to be honest, I really didn't learn anything useful from Suze anyways. But it is what it is, and this holiday is going down in history as being one pretty big bummer.
And I'm going to tell you right now, Children of Long Creek, next year I'm buying one bag of The Good Stuff (the $8.50 bag of Snickers and Milky Ways, yall) and one bag full of dum-dum suckers and those awful banana Now and Laters that ruin your teeth. If you don't wear an easily identifiable costume or learn to press the doorbell just ONCE.... you're totally getting the cavity-makers and that's all I have to say about that. That's right, we'll be the house with bad candy. Whatever.
I'll tell Matt to be prepared to wash our smashed pumpkin off the house next year. At least he'll be able to see it okay with the porch light on.
Happy Birthday, sweet Katie. I can't really believe you're 25. That sounds so adult. And you can't possibly be an adult, can you? No, no, that seems impossible. You see, you are still just that little first grader who decided to go by Kathryn for a month, until you realized how much more work it was spelling that out on every school assignment. You are the 7 year old doing handsprings in the side yard under the willow tree, with a fake sprained ankle (a la Kerri Shrug) wrapped in ACE bandages. You are the brave 9 year old, the one who I send over to strangers in bookstore to ask what time it is or to other little girls on the beach to ask if they will be our friend. You are the ten year old who is draped in Mom's old bridesmaid dresses and shawls, clomping around in too-big heels with your Molly doll tucked under your arm. You are the middle schooler who is scared to be left home alone, who I discover hiding in the closet with your fist closed over a roll of quarters, ready to knock a burglar unconscious. You are the high school freshmen in too-tight black pants with a can of Orange Sunkist, sitting in the commons completely at ease with my friends. You are the twenty one year old, running alongside me at mile twelve and grabbing my hand as we both spot the finish line sign flapping in the Virginia Beach sunlight. You are the graduate with a Master's degree and a wardrobe of Ann Taylor skirts, ready to write lessons plans and give detention slips. And now somehow, you are the 25 year old, as confident and assured and gracious and gorgeous as any woman could be. I love you, little sister. Happy Birthday.
Thursday, October 29, 2009
- My hubby. Sharing a life with you is delightful.
- Animal, Vegetable, Miracle on audiobook on my ipod.
- Finding my ipod after 4 weeks.
- Eating my first salad in a month. Delicious greeny-ness.
- Buddy, laying down in crate, not barking. Small victories.
- My baby sister, who is turning 25 this weekend.
- Feeling about a zillion percent healthier this week.
- Food Gawker. I <3>Libraries.
- Having a mom who is one of my best friends.
- Seeing the world through a camera lens.
- A peaceful mind.
- Health insurance.
- My super ambitious intern. I can't keep up with her.
- Feeling loved.
- Having wonderful in-laws.
- Coaching four non-regular clients of mine this week for a project, getting to coach brand-new people excites me all over again about what I do.
- Catching up with an old friend from grad school.
- Making sleep a priority.
- The safety of a friend who was in a really bad wreck this week. I'm still shuddering.
- Online grocery shopping.
- Orange and yellow leaves along Rt. 52.
- My job.
- The feeling of a hot beverage in a to-go cup cradled in your hands.
- A bag of organic bibb lettuce and an eggplant grown + given to me by a participant.
- Homemade salad dressing.
- Matt starting vacation in 2 days.
- Checking things off a to do list.
- New books from the library.
- Feeling well-rested and healthy.
Sunday, October 25, 2009
When I first moved to Winston-Salem, one of my roommates asked me if I wanted to go with her to a friend's house to "have some barbecue"for dinner. I expected we'd be going to someone's backyard, where a grill would be fired up with hot dogs and hamburgers. Imagine my surprise when we arrived and there was a big silver, disposable chafing dish of mushy looking meat, some weird colored slaw and bags of sandwich buns. I learned looks can be deceiving, and it wasn't long before I too fell in love with the southern version of barbecue, even serving it at my wedding!
So needless to say, when our friends Donna and Matt asked us if we wanted to join them to go to the Lexington Barbecue Festival, we jumped right in the car. Matt and Donna just moved here from Illinois for residency, and had yet to experience any NC barbecue. According to the website, the Lexington Barbecue Festival brings 100,000 people into the small town of Lexington AND from a quote on their site, is one of the "top ten food festivals in the USA." WELL. We couldn't miss that could we?
The Pig Reigns
I have to say, I expected a little more from all the hype. Don't get me wrong - the barbecue was delicious (as it always is), but the festival was just your typical blocked off street fair: vendors selling everything from local honey to purses made from John Deere fabric (who keeps these vendors believing there is a demand for such product?) to handmade bird cages. And of course, there was the usual plethora of fair food - giant turkey legs, gyros, bacon wrapped scallops and fried candy bars. (Welcome to the South, ya'll!)
Turkey Legs, Of Course.
You never forget your first time!
Saturday, October 24, 2009
It's been about 20 days since I started the higher dose of steroids, and each day has brought little victories that move me closer and closer back to feeling like I have a normal, healthy life again. On Monday, I ate lunch at work. Tuesday, I worked a full day. Wednesday, I nibbled a (cooked) green bean. (I know, it's pathetic, but the idea of eating veggies again? So excited. I miss my green things.) On Thursday, I threw all caution to the wind and ordered a (decaf) caramel macchiato. I sat in Starbucks for nearly 3 hours, tentatively sipping, and waiting to see what would happen. (Nothing!) And last night? I apparently slept through the entire night. Small victories, but each one moves me a little bit closer to feeling normal again.
After much debate on my drug choices, I ended up deciding to go back on the 6mp I had been on before. I'm a little bit disappointed that I wasn't able to stay off them, for the reasons I mentioned before, but I know that being healthy and achieving another long term remission is more important. I'm really hopeful that they'll work again this time, although it'll probably be late November/December before we know one way or the other. The benefits I'm seeing right now are from the steroids, and I'll be on them, slowly tapering down the dose, while the 6mp builds up.
In the back of my mind lurks the fear that I'm only better temporarily and that with any 10 mg drop in steroids, all of the symptoms will come rushing back. I have to keep actively brushing this thought from my mind, reminding myself that I've achieved remission with 6mp before and telling myself it's going to happen again. It seems that getting healthy has been one part medical, one very large part psychological. Which is, of course, the most obvious statement EVER.
I have to say though, that throughout this turbulent month I have been so very fortunate in many ways. For starters, I am married to a man in medicine. There is nothing delicate and lovely about the symptoms of ulcerative colitis, and it's always made it easier that I've never felt like I had to tiptoe around what was going on with my body and my health with him. (I will also say that after seven years of having this disease, I have personally become way more comfortable discussing it. For instance, telling my boss I needed to work from home because "the bathroom in our office is too far away and I might not make it"... probably would not have happened two or three years ago. I'm over modesty.) But more importantly, Matt has always gone out of his way in the things he does to make each day easier and to be sympathetic to the unpredictable nature of the disease, and for that I am so very thankful.
I've also been fortunate to have some really astoundingly wonderful medical care. I know our health care system is broken and in fact, I had a short period of time in my life when I had no health insurance and experienced the hell first hand (crying in Wal-mart pharmacy? Check), but I just can't get on board with people who bash physicians, who are just a product of the broken system. Ok, I know - I am absolutely biased on this issue. But, my physician (not the one I'm married to, the one who actually treats me) is a wonderful practitioner. He responds to emails within a few hours, he never rushes through appointments, he explains my options thoroughly, answers my questions... he's just great and that's that.
Thursday, October 22, 2009
- gorgeous red trees in my neighborhood. Good work, God.
- silent, pristine morning walks with my doggy, the thinking time it affords me and the (relative) calm it gives him
- all green lights on the way to an appointment I may have been running a tad late for
- photography class
- that my hubby loves his job
- driving home phone calls to my momma
- 2 books I've been wanting to read are on CD at the library. double WIN: audiobooks make commuting on 52 more tolerable and library means FREE. Incredible.
- my Aunt Jennifer
- amazing coaching session today
- my marriage
- the way Buddy curls up in his bed with his face all smashed into the side of it
- feeling brave enough to drink half a caramel macchiato today; not getting sick
- my delightful, hard-working intern
- a comfortable, loungey night with girlfriends last night
- Of June, the new Owl City album. All happy listens, but start with Hello Seattle.
- Hulu... since SOMEONE let Nitro Circus and American Choppers bump The Office from DVR
- getting to see my baby sis in 2 weeks
- Heather emails/texts
- my clients
- the most perfect fall weather air this afternoon
- having a great relationship with my in-laws
- the slideshow my photog instructor put together of my classmates' Dixie Classic Fair photos. So much talent.
- Katie & Levi's news that they are having a little girl
- the always friendly baristas at Starbucks Robinhood Rd
- Swaptree. This week I traded Beer Can Chicken (don't ask) and Rachael Ray Express Lane Meals for a John Ortberg book and Eckhart Tolle's Power of Now. I heart swapping.
- the yummiest shrimp I've had in a long time, cooked by MY hubby for dinner
- How supportive my friends & family are of my business.
- My sweet little house. I love every corner of it - even the corners with Buddy fur.
- But I especially my bed. Where I shall retire now.
- And then it will be Friday. Which I am also thankful for.
Tuesday, October 20, 2009
And some good friends to hang out with...
Or to sling you a quick graham square when you need it...
Friday, October 16, 2009
Here is the toast we gave to Pam and Craig at their rehearsal dinner. I think it does a better job summing up how much we love our friend, and this union, more than any other update I could do.
There are certain qualities that come to mind when one thinks of the types of characteristics that they would want in someone they were going to spend the rest of their life with. Craig, we have known Pam as long as you have and we think we know what those special qualities are that made you fall in love with Pam and ask her to be your wife.
For starters, Pam is one of the most loyal people we know. If any of you have ever been with Pam when she comes across someone who just so happens to cheer for any team other than Wake Forest, you have witnessed this loyalty first hand. Some where in Boston there is a young man who may never wear a Duke Basketball shirt out to a bar again, for his own safety. Craig, you are a fortunate man to be on the receiving end of this type of loyalty. Make sure you stay there.
Another trait of Pam’s that we know you have fallen in love with, as we have, is her honesty. There is no one who tells a story like this girl can – and whether the person in the story is herself, a co-worker, a neighbor, or some random stranger she happens to catch in the act of something embarrassing – we know when Pam tells a story, there will not be a single fact left out. Appreciate this honesty, but just remember – we hear all her stories too.
Pam is also a very nurturing person. Now this many come as no surprise to any of you who have seen her carry Ruby around on her hip or issue Craig a packing list 3 weeks ahead of the honeymoon, but even back in college Pam has always been the one to make sure that everyone is taken care of and happy, whether that meant driving us back and forth to Target or making sure no one “unwelcome” was line jumping to get into the Lounge.
Pam, we have been fortunate enough for many years to be recipients of your loyal, honest and nurturing friendship. You have brought so much to each one of our lives through your friendship, and we know that you and Craig are going to have an amazing marriage together by virtue of these same traits that have made you our best friend. We wish you both a lifetime of happiness together.
Congrats, Pam & Craig.
Thursday, October 15, 2009
- Understanding, wonderful, loving hubby. (I love being married to you.)
- Campfire smell on my clothes, in my hair, embers fading out on the back porch
- Making the best ever twice-baked potatoes
- Good health insurance
- 10 minute naps
- 3 days in a row with coaching clients who had "a-ha" moments. I loves mah job.
- I ate yogurt. I didn't get sick. List-worthy.
- My sweet, kind friends Jamie & Donna dropping off a basket full of colitis-worthy goodies (I'm plowing through the Gatorades, girls) and fall decor - pumpkins, gourds and mums. <3.
- Feeling just stupid enough at my camera to want to keep trying to figure it out - Hopes that someday I may be able to take pictures that scratch the surface of this talent, and in the meantime, keeping this website bookmarked for insta-happy.
- Dr. B. He returns phone calls in less than 24 hrs. My doctor? Is awesome.
- That the balloon boy wasn't actually in the balloon.
Tuesday, October 13, 2009
Hooray Dog, Hooray!
Yesterday I came home to find you
Sitting with in your crate in silence
And we celebrated
You are a good dog!
We are so happy.
Hey, here's a bone!
Hey, let's do a dance!
You are a good dog
Now you are so happy you just peed on my carpet
Saturday, October 10, 2009
"I'm a little nervous about the procedure," I mumble. She stops her typing, comes over to me and puts an arm around me and clucks maternally. This just makes it worse. I'm not nervous, but I didn't know how to explain to a complete stranger that I just shouldn't be here. I belong on the other side of the waiting room, the clinic side. Where we meet in rooms with computers and tables, and we talk and we shake hands and we pay $20 and go on with our lives. I don't belong on this side, where I have to wear a bracelet and a gown and be rolled around in a bed.
"I'm not sick!" I want to scream, as the next nurse points out the gowns, and the little socks with grips. "I'm not sick," I want to scream as she gives me instructions to prep for the flex sig procedure. I stare in the mirror at the girl wearing the gown, who was no make up on, a frown on her face and tears escaping the corners of her eyes. From the bathroom of my hospital room, I text Jess. "I'm having a meltdown," I tell her. She texts me long arms hugs and reminds me to breathe, that the procedure will be short and I don't have to make any decisions right now.
Thirty minutes ago, I was sitting in the clinic room, talking to Dr. B. He explained why he wanted to do a flex sig (to eliminate any possibilities that this was anything other than UC), told me he fully expected it to be UC and if it was, these were my two choices. That's what those hot things started building up behind my eyes. When the lump started pressing hard in my throat. "Breathe, Megs," I told myself as he sketched out on paper in front of me the two choices, the different classes, risks, time lines, side effects. None of this was anything astoundly new, I had gone over both of these exact same choices in 2005. Different room, different doctor, different hospital, same choices.
It's just that.... I had forgotten what it felt like to feel this way. To feel like a sick person. It doesn't feel like me, anymore.
But I have choices, and choices are good. I know this. In 2005, surgery was looking like a very real option. Today it wasn't even on the table, and I am grateful for that. I have choices.
I guess, despite the very real presence of symptoms and the very real disruptance of my life over the last 16 days, I just kept expecting to wake up and feel better. That the steroids were still waiting to kick in, and that this would just be a small and soon forgotten about lapse. Sitting there looking at the names of those medicines hit me square in the gut that this was real, I was sick and those were my choices.
When I was 23, the choice was simple. 6mp is an older drug. It's been around and tested for 30 years. It has minimal side effects, other than a compromised immune system and excellent effectiveness. Remicade, my other choice, had just been newly approved for UC in 2005. My doctor (at the time) was excited about it's possibilities, but still a little nervous about it given his complete inexperience with a drug in it's infancy. Remicade was boasted to work immediately, 6mp had a 8-12 week build-up. I knew at the time that steroids would buy me 6-8 weeks of wellness, and I chose 6mp. As I tapered down the steroids, the 6mp kicked in. In March 2006, I went off steroids for the last time and I was in remission. Cue the kick line.
Cut to January 2009. After doing some research on 6mp and learning that one day when I had children I wouldn't be able to breastfeed, I decided to try tapering off. I wanted plenty of time to be off the medicine to see if I could stay healthy without it. Dr. B was not estactic about this game plan, but somewhere in the midst of "it's your body and your decision," he consented. Nervously. 6mp doesn't take long to get out of the system, and at the 3 month point, we both breathed a small sigh of relief that hey, I might be able to do this. (This is where the "colitis is a disease of recurrence" talk came in that I oh so smugly laughed at. Oh, the irony.)
I am pretty sure at this point in the game my doctor would love to grab me by the shoulders and shake some "I told you so, child" into me. However, by some modicum of professionalism and restraint he resisted the urge to do so. I have very emphatically received the message, however, that whatever medication I choose to go now, should I achieve remission, I would be very highly recommended to stay on said medication. Loud and clear, captain.
I came home from the appointment feeling very despondent. I knew I should be happy that I had two choices, but I just felt resistant that I had to make a choice, period. Add to that a day of not eating or drinking in preparation for my procedure, and I felt fatigued, headachey and squirrely. My brain literally felt like it was pulling away from the insides of my skull, a feat that I had only been able to accomplish thus far in my life through the consumption of 6 whiskey and sprites, followed by three Hot Diggity Dogs. (I am sorry, Mommy Dear, that you called me at this immediate juncture. I am surprised you do not have a plane ticket in hand right now.) I came home and went to bed. For the next 16 hours, I slept fitfully, waking up to drink Gatorade, converse briefly with Matt and possibly let the dog out at some point. This may have been the middle of the night, and I may have worn my bathrobe in the front yard. Whether this was a REM cycle or real life, only Buddy and any insomniac neighbors know.
Sometime around noon, I got up off the couch (where I had transferred at some unknown point), took a shower and got dressed. It was then that I decided my pity party was coming to an abrupt end. No one had brought cupcakes anyways, so there seemed to be no point in continuing it.
I'm not sure what sparked this about face. Perhaps it's the hopefulness that one of these two drugs is going to restore me to normalcy, or the delirium of 2/3rds of a day of sleep, but I think mostly it's the memory of a girl who was sick and despondent and fretful for three years. I don't want to be the person I just was for the last 16 hours. I looked in the mirror at the girl in the hospital gown and I remembered her, and it scared me. I am sorry that she experienced this once, and I don't fault for her for being so sad about it, but I don't want to revisit it.
I am not crazy about either choice, because both come with their tri-fold sheet of side effects, risks and other warnings. 6mp still comes with its long build up, but I've had a track record of success with it. Remicade holds promises of immediate, acute relief but is still bit of an unknown and a newer drug. At 27, I'm thinking of drugs in a way I never did at 23... in some years time, I may not be the only person whose body they effect. And if I got the message right from my doctor, some years time is going to be the anticipated duration of whatever drug works for me next. That factor seems a bit surreal, but I guess at the end of the day the bottom line is healthy me is going to be best as far as all that goes.
Being a person with a chronic disease comes with a different story line, one that I guess I had forgotten I was a main character in. I might not have chosen for my body to do this, but I'm pretty sure at the end of the day, I do still get to choose what my mind does. I don't know how my body is going to feel tonight, or tomorrow, or the next day. I don't know when I'll eat a salad or drink a glass of wine again. I don't know when I'll have to energy to spring out of bed at 6 am, teach a class at 2 pm or cook dinner at 5 pm. I don't know when I'll eat something without looking around for the nearest bathroom, or get in the car without counting miles between exits. And I don't know which drug I choose. But I do not choose to be sick, and sad, and fearful. I choose to be patient, and hopeful and optimistic. I will start there.
Trust me, nobody looks good in this color blue.
Thursday, October 8, 2009
- Health insurance (more so than ever before.)
- A responsive doctor
- An understanding and incredibly helpful hubby
- A flexible work schedule/environment
- Making it all the way through Pam's wedding ceremony w/o getting sick
- Fall weather
- The frisky doggy trot that accompanies fall weather walks
- Relentlessly empathetic friends and family members
- WFU beating NCSU
- Pumpkins outside Fresh Market
- My fabulous new intern and new found love of delegating
- Spending last weekend in a gorgeous part of the country with my six best friends
- That my mom always answers her phone when I need to talk
- My drive home. It is very green and this makes me happy.
- Other people's blogs. I like your stories and life perspectives.
- Possibly having gotten through to a very, very stubborn participant. I think I saw a light bulb go off and he asked me for the audio of my class.
- My daddy's impending NC visit
- Matt being half-way through Gen Med, and having this Sat off
- Heath's Oct 1 phone call & forcing me to be accountable to goals
- LOLCats. Inexplicable happiness emailed to me daily.
- My sister-in-law's new job!!
- Photography class.
- Going to the fair (a place I hate) and finding myself perfectly happy to walk around for 2 hours solo snapping pics. Completely avoiding the fried butter.
- Noodle dog curled up at my feet.
- That tomorrow is Friday and right now it is bed time.
Tuesday, October 6, 2009
Case in point? As noted in my prior blog, I've been spending a great deal of time in one particular room of the house. If I'm not intentional about latching the door all the way, it isn't long before a little paw comes and swings the door wide open. If I do shut it, I can pretty much guarantee on tripping over his curled up body as soon as I walk out. I get up frequently during the night to use the bathroom when I'm flaring, and I usually check to make sure Buddy's sleeping soundly in his corner of the living room as I pass through. Tonight, I got up and saw no signs of Buddy. I was a little perplexed until I rounded the corner to find him curled up, sound asleep, right in front of the bathroom door.
The last time I was there, we made some adjustments to my medications (ok, truth be told, I made some adjustments to which he hesitantly agreed to) and we discussed the ramifications of what would happen if these adjustments didn't go smoothly.
Sitting across from me in his chair, he talked about various options I would have, explaining in very simple terms that "colitis is a disease of recurrence."
I am chagrined to admit that in my head, I smugly laughed at this statement. "Not me," I thought. "I've got this baby licked."
Who knows where this burst of confidence had come from? In the six years I have had ulcerative colitis, the first three years were a rollercoaster of uncontrolled symptoms, tinkering with medications, enrolling in clinical trials, and even contemplating surgery. While I have been amazingly blessed to be in remission for the last three years, it's not like the past history of my disease gives me reason for such arrogance.
But a lot has changed in my life in three years and at that moment, I did indeed feel utterly confident that while colitis may be a disease of recurrence, mine would not be making a comeback.
You know where this is going, right?
Note to you, dear reader, if you're squeamish about body functions, it's time to sign off. If you're not too familiar with ulcerative colitis, let me just inform you it falls under the classification of "Inflammatory Bowel Disease." I like to call it the angry colon. You do the math.
It started innocently enough. Three weeks ago, I was meeting Jamie and Donna for our 10 mile run on a crisp, beautiful Saturday morning. I pulled in to the Harris Teeter parking lot where we were meeting and had to dash inside to find the restroom. I didn't think too much of this, as running and urgent bathroom trips aren't too unusual - although I didn't really take stock of the fact that this usually happens post ten miles, not pre ten miles. The next week trickled on like this, and I systemically began eliminating the usual culprits - coffee, pop, sugar, running...
No avail. Last Friday, I was working from home and I knew it was time to concede that this was looking like a flare. I could barely finish drinking a glass of water, much less eat an actual meal, before I was running to find the bathroom. Other telltale signs of a flare began showing up - joint pain, fatigue, cramping, and then most undeniably, tremendous amounts of blood. (Yup, I'm going to go there. This is my life, mk?)
I didn't panic yet, as I've generally responded pretty well to steroids in the past as a quick fix for flares. I called the on-call physician who prescribed me a low dose of steroids. I counted down the days til Monday, counting on the fact that my doctor would come through my usual dose and by Tuesday, I'd be back to normal.
Fast forward to Wednesday. I'm on my usual amount of steroids. I'm leaving for Montauk, for one of my best friend's wedding in 24 hours. Nothing has changed. No food will stay with me. I'm waking up five, six times during the night. I am a zombie. I am tired, I am hungry, I am sick of the hum of the lights in my own bathroom, I am scared that this is not stopping. I am, officially, anxious.
The weekend travel to Montauk was one of the most anxious and stressful weekends I've experienced. The fear that the urgency to use the restroom would overcome me at the most inopportune moment - while sitting in the middle of preacher's homily, the moment the plane was barreling down the runway, while I was standing up there giving my toast to my lovely friend - was overwhelming. I sat in bed on Saturday morning bawling into my two wonderful girlfriend's arms, overcome with sleep deprivation and anxiety, sniveling about how I was going to ruin the ceremony by dashing from the front pew, heels clattering loudly as I sprinted to find the SINGLE bathroom in the back of the church. (Note to church builders: more than one? Please?)
Thank the high heavens these same girls spent nearly every waking moment with me during the first year of my disease, our senior year in college, when I was undiagnosed and equally as out of control. They know that "find a gas station" is not a request, but a statement; they know when I say "I can't eat that" to move on, and they make no fuss about tucking me in early after the rehearsal dinner to go back out, never once making me feel bad that I'm not keeping up. My gratitude for the support and understanding of these girls is profound.
I survived the weekend, even sat through the entire ceremony. Without a single drop of champagne or bite of wedding cake (Boston Creme Pie, cry me a river...), I even managed to lose myself for a few hours in the boisterous joy of the reception, dancing around with my favorite people in the world to "Jessie's Girl" and "Don't Stop Believing." And, let's be honest, I've been a bride... I know that everything I was experiencing didn't extract a single moment of happiness from my gorgeous, wonderful friend's perfect weekend.
Although I did try to hide it from her, and once she determined I wasn't pregnant after loudly pointing out that I was not drinking champagne (AT ELEVEN AM, WHAT AM I, A WINO???! WHAT DO YOU PEOPLE EXPECT... ok yes, clear giveaway), she then quickly deduced that I was sick. "You didn't eat salad at lunch. You always eat salad." Most observant friend ever? You bet.
Also on the amazing list? My husband. Always has been, since the moment I was diagnosed. Can you imagine coming home from a 12 hour shift of sick people ... to another sick person? He serves me in his actions, walking the dog when he realizes I'm going to be late to work because I'm behind closed doors, heating up another frozen pizza with nary a complaint and texting me to drink Gatorade throughout the weekend. He is unfailingly and unflinchingly there.
The weekend is behind me, and I'm back home wondering what the options are. I will see my doctor on Friday, and it sounds like there's a flex sig procedure in my future which I am less than enthralled about. In the meantime, I am trying to take this one moment at a time.
I don't look sick, I don't sound sick, and short of explaining my bathroom habits, it's infinitely hard to explain to someone what living with colitis day to day is like. Each moment is centered on where will I be, will there be a bathroom, can I eat, can I drink, will I be with others, will I have to move around a lot... Sleep is interrupted every couple hours, and the resulting deprivation can quickly turn a minor stress into tears and catastrophe. Little things are affected. I can't walk Buddy for half an hour, because half an hour takes me too far from home and the bathroom. Social life? Non existant. I don't eat before teaching, because what if? Mid power point? Can you imagine?
I know a great deal of my remission has been the change in my mental status over the last three years. I have made long-legged strides to deal with stress definitely, to loosen tight reins on the need to control, to choose thoughts that bring me perspectives of joy and gratitude. This is hard to do when the most basic of body functions is not even something you have control over. I will honestly say I have been fighting an uphill battle to "think positive" for 10 days, since this started.
Yesterday, I decided to stop trying to force my thoughts to positives and try to go a little more simple. Each moment that I find my shoulders up around my ears, my hands gripping on the steering wheel, or tears pricking at my eyes as thoughts of "what if this keeps going... what if i have to have surgery... what if I don't respond to.... what if the flex sig shows.... WHAT IF...." I am trying to stop and breathe. That's it. Just breathe.
So that is where I am, right now.
Colitis is a disease of recurrence. That is my right now. It hasn't been my every single day, and I pray it will not be in the future. But for now, it is. It is.