Let's face it: anyone in a relationship with a crohnie is going to have some unfortunate side effects to deal with. I am BEYOND fortunate that I married a man with a high level of tolerance and a huge sense of humor. It makes life so much easier!
This video makes me laugh out loud (can you say, "CUPPA CHEESE!")? I think the only move missing from this is the "Dutch Oven."
CCFA’s second annual IBD Awareness Week ended last Friday,
and I have continued to ponder the subject of awareness. I don’t think anyone
(especially Crohn's and colitis sufferers) disagrees that promotion of awareness didn’t end on
December 7. This must be a year-around effort. I’m glad that IBD Awareness Week
has been officially recognized, but I feel we’re just getting started, and that
we’ve got some substantial ground to cover.
There was an Op-Ed
piece by Roger Cohen that ran in the New
York Times last Thursday, addressing the issue of over sharing online. It
struck a chord with me, because it was published during a week in which I was
trying to promote awareness of a topic that, for much of the general public,
would be considered “too much information.” I used my social network to share some
statistics on IBD in an effort to increase awareness. I did doing so sparingly,
cautiously, and with careful consideration of my audience; I didn’t want to
over share. Increasing awareness on a taboo subject is difficult.
My messages weren’t necessarily ignored, but they weren’t
exactly accepted or shared or even acknowledged much, either. After all, IBD is
a medical condition that deals with the digestive system and bodily functions. Shhh....it’s impolite to talk about these
topics in public. It’s “Too much information.”
Too Much Information. There’s even an acronym for it now:
“TMI.” People just aren’t comfortable hearing about bathroom habits, abdominal
pain, and bodily functions (which, as far as many people know, is what IBD is –
bad diarrhea). We are taught about this inappropriateness from the time we are
children. Poop is “gross.” No potty talk or fart jokes allowed. Discussing
these things is uncouth. Even in this About.com
article describing what “TMI” means, bathroom habits and private medical
conditions are cited as examples of things that are TMI – the sharing of “unpleasant
It seems as though we have our work cut out for us.
I do have hope. Breast cancer awareness has grown
considerably since Breast Cancer Awareness Month was first instituted in 1985
(granted, breasts are significantly more glamorous than intestines). And Katie
Couric’s televised colonoscopy in 2001 not only helped increase awareness of
colon cancer, but resonated so well that it has been credited with a 20% uptick
in screening colonoscopies in the years that followed.
IBD has a significant “ew” factor to it. But my hope is that
increased awareness will help people realize that this disease isn’t only about
diarrhea, it could happen to anyone, and it has a significant impact on
people’s day to day living.
For me, IBD Awareness week went beyond spreading awareness. It
also provided another way to connect with a community, one that I have
rediscovered after grappling more often with my disease again. It is
encouraging to know that I am not alone on this journey.
I recently had the opportunity to read Anna Quindlen’s memoir,
“Lots of Candles, Plenty of Cake.” In it, Ms. Quindlen reflects on “Life in the
30’s,” a New York Times column she
wrote in the 1980’s and 90’s about parenting. (See? Sharing personal stories
was happening even before social networks!). She ponders letters she received
““I feel like I’m not alone,” some of those who wrote to me
said. And that sentiment changed my life. That’s what’s so wonderful about
reading. That books and poetry and essays make us feel as though we’re
connected. As though the thoughts and feelings we believe are singular, and
sometimes nutty, are shared by others. That we are all more alike than
different. It’s the wonderful thing about writing, too.”
Although she was talking about connections made over motherhood
(another topic I am inherently interested in), isn’t that part of what we’re
trying to do? Find other IBD sufferers? Find camaraderie in something that can
be isolating? Help each other muddle through these sometimes awful experiences?
People tend to seek out others in similar circumstances. By
sharing our stories, through IBD Awareness Week and otherwise, we can also
build our community and find each other. And by aligning with one another, we
can help raise awareness. After all, there is strength in numbers.
This week (December 1-7) marks the second year the CCFA has sponsored "Crohn's and Colitis Awareness Week."
Senate Resolution 199, passed on November 14, 2011, "Expresses support for the goals and ideals of Crohn's and Colitis Awareness Week. Expresses appreciation to the family members and caregivers who support people in the United States living with Crohn's disease and ulcerative colitis. Commends health care professionals and biomedical researchers who care for Crohn's disease and ulcerative colitis patients and work to advance research aimed at developing new treatments and a cure."
We all have our own stories, and part of mine is struggling with Crohn's disease. Even among the 1.4 million Americans living with IBD, each story is unique, with it's own demographics, symptoms, diets, and treatments. Each story is important and relevant, and they are why increased awareness is vital.
Have you ever seen the 1985 flick "St. Elmo's Fire?" (If you haven't, please do.) In the movie, there is a scene where Rob Lowe's character goes to a dinner party with a friend whose mother is talking about someone who has been diagnosed with "the cancer." But every time she utters the word "cancer", she whispers it, like it's something too awful to be said out loud.
That's sort of how I sometimes feel saying that I have Crohn's. It's not widely known or understood. Whisper it with me now: "I have Crohn's disease." No, it's not something that everyone needs to know, and it doesn't need to be shared with just anyone. But I would like to acknowledge my disease and the impact it has without feeling like it some how makes others cringe, or that it invalidates some of my other traits or qualities.
For what other reasons is awareness of these diseases important?
- More than 70,000 people (children and adults) are diagnosed with a form of IBD every year
- Crohn's and Colitis are not only about having to use the bathroom; these stories involve pain, fatigue, surgeries, hospitalizations, and medications - impacting not just the patients, but the people around them
- For my children!
- Awareness is a first step toward finding a solution
- For increased acceptance - Ally's Law (The Restroom Access Act) is an important step!
- Because Crohn's and Colitis are among a family of autoimmune diseases whose rates of diagnosis are on the rise
- So we can talk about it, without shame
The year I was diagnosed, I found the little plaque below in the university book store. It has had a place on my desk ever since. It says, simply, "Things happen for a reason, just believe." Whether this statement is true or not, is has helped me through some tough days. I always believe it will get better.
I believe in building a community and awareness. I believe in Crohn's and Colitis Awareness week, and what it can achieve.
One of my favorite things about being a parent is having the opportunity to rediscover the world and my imagination (or at least enjoy our children's imaginations). A few years ago, my husband and I started taking photos of oddities we'd find around the house. We don't do it all the time (who has the time?) but we're regularly amused by the creativity(?) of our children.
Here are a few things I found around the house this past weekend that made me chuckle.
Foil around the leg of our coffee table. For some reason, when we had the foil out, the boys each wanted some pieces, too...for a "project". I did not know that would include wrapping up the furniture:
And why wouldn't we wrap Baby Elmo up in foil too? Perhaps that seems the logical choice, for his new crib in the bathroom cabinet:
Our 5-year-old has added several helpful flags around the house to remind us what we shouldn't touch or sit on (like my birthday flowers). The fact that most of these notes are for his younger brother who can't read doesn't matter. This kid LOVES to write notes for any reason (a fact that I love!).
Also, not pictured: chopsticks on the lounge chair. Why? Why Not?!
Whew! Typing that number out makes it feel even bigger than it is!
I know, you're not supposed to share your birthday wishes, or they won't come true. But this one I will. This year, as have done for a number of years now, I wish for good health (or, at a minimum, no hospitalizations). I wish this not only for myself, but for my sons, my husband...for my whole family.
I don't remember exactly what I wished for earlier in life - in the "healthy years." I'm sure somewhere along the lines were a job, success, love, and some material things. Those things matter less, especially now that we have children. But I do wish for them to be healthy, to have many opportunities, to be kind, giving, and to learn from their mistakes. I wish for them to be successful and happy.
This year, I was sick for my birthday. That ill-timed cold I came down with last week turned into a full-blown fever (quite possibly the flu) and eventually settled into my head and lungs as a sinus infection and bronchitis. I've been miserable for days. Fortunately, I have a script for antibiotics, and things are on the upswing! Honestly, I'm glad that's all it is.
This bug I've caught is an annoyance, and may or may not be connected to my weakened immune system. It's also a reminder that lately, I have been sick a lot. I have struggled in the past few months to control my Crohn's disease, adjusting meds and my diet; making extra trips to the clinic for labs and check-ups. It's a frustrating proposition and it can take a toll emotionally and mentally at times. I accept that this is what life will be for me, and I acknowledge that it could be so much worse.
But for the aforementioned those reasons, I (selfishly?) wish for health. Because it gives me a little more freedom to be an active Mom. It makes me feel like I can give everything I can to parenthood, my marriage, and my career. For awhile, it makes me feel superhuman, no matter how long my reprieve may be.
And so today, I close my eyes and I wish, wish, wish so hard....for health.
This is Part II of IV. The previous installment can be found here.
Everyone’s diagnosis story is different, just as each
person’s disease (Crohn’s or otherwise) manifests itself differently. As
such, everyone’s symptom onset is unique. It’s probably not unusual, then, that
you can’t pinpoint a specific day you “got sick.” Rather, you can narrow it
down to a span of time when you started to feel as though something wasn’t
My time span begins in the second half of 2003. My husband,
Chris, and I had been married for just over a year, I had recently taken a new
job, and I was to start graduate school in a matter of weeks. I considered myself quite healthy –
not just medically, but physically. I ate well, exercised, didn’t smoke, and
was at a healthy weight.
One day early on in this journey does stand out in memory, though - I had rotisserie
chicken from the company cafeteria for lunch, and after that, I felt awful. I
don’t remember the date, other than it was late summer, nor do I actually consider this Crohn’s related – it was probably just bad chicken and the proximity to
other symptoms appearing was a coincidence. However, this is the first
time I remember having had such an adverse reaction to food, and it wouldn't be long after that this
would become a common occurrence.
In the second part of that year, I began having confusing and
embarrassing symptoms – including hemorrhoids and a fissure. Yep, I just typed
all that out there for the whole Internet to see! To hell with modesty - my
embarrassment issues are cured!
My poor bottom - it was uncomfortable, irritated, and I was bewildered. Who on earth was I going to talk to about this? You can’t exactly bring
it up over drinks with girlfriends: “So, my butt hurts and bleeds lately. How’s
yours?”I kept my discomfort
to myself, and finally consulted my Primary Doctor. Cue the inspection of
orifices I never in a million years I imagined happened in the world, let alone
I was eventually referred to a colorectal surgeon in the spring of 2004. This was
the first time, frankly, that I learned this profession existed. Little did I
know I would eventually keep a contact for this specialty in my address
At my first appointment with the surgeon, I felt totally out
of my element and nervous. This was similar, I suppose, to a first
visit to a gynecologist (or for men, a prostate exam) – you are going to have very private areas inspected,
and you feel vulnerable and are unsure of what to expect.
The nurse had me disrobe from the waist down and lay down on a table with a disposable sheet covering my lower half. When the doctor came
in, after a discussion about my symptoms, he had me lay on my side, facing the
wall opposite him and the nurse. With gloved hands, he gently spread my butt cheeks to examine my fissure. I was facing the opposite direction, but can only imagine this looked something like someone pulling apart the buns of a giant sandwich to peer inside
and see what kind it was. OH, THE HUMANITY! Couldn't they sedate me for this?
The surgeon confirmed that yes, I did indeed have a fissure, assured me that
this was quite common, and told me that a simple outpatient surgery would resolve the issue.
He tried to reassure me by explaining that he recently treated a local professional
basketball player, and this patient was on the court by the weekend. Easy
The doctor and nurse and been very professional and
understanding, yet when I left the office I felt an odd mixture of relief and having been
violated, thanks to my examination.
A few weeks later I had the surgery, and I
will just say that OH MY GOD the pain from my first bathroom experience! It was
awful (I cried out in pain), and no, I did not feel like playing basketball that weekend. Recovery didn’t happen as quickly as I’d hoped, but overall, it
wasn’t terrible. I was back to work after a few days.
"The Runs" and IBS
Mere weeks after my surgery, I came down with a serious bout of diarrhea (ewwww!). It was almost as if my GI tract had made a deal with my ass to make my bowel movements easy to pass and allow for healing. The duration of this new symptom had also became painful, however. Remember Harry's fiasco after unwittingly ingesting laxatives in the movie "Dumb and Dumber?" My experience was not quite so dramatic, but yes, something like that...for weeks on end. Maximum doses of Imodium hardly slowed it down. After more trips and calls to the doctor, gagging over a "sample" collection for the lab, and a course of antibiotics, it was barely improving.
Things started to slow and resolve after I went on a clear liquid diet for a few days, followed by a progression to a "soft" diet. The Nurse Practitioner at my clinic prescribed something to help reduce the acid in my stomach, which did help with my discomfort. Finally, blessedly, it stopped. Angels sang! I was "better." I was diagnosed with Irritable Bowel Syndrome (IBS) and given a prescription for anti-anxiety medication, being told it would likely help my symptoms.
Pain and the Search for More Answers
For awhile, I did feel better. But by the fall of 2004, I started to have acute flare ups, during which I would be doubled over in pain for much of the night, which left me feeling depleted and weak the next day (for some reason, they usually occurred at night). Why I didn't visit a doctor again after I had a few of these, I do not know. Fear? Denial? Often, by the light of the morning, I figured it was over, trivialized it, and decided it would be difficult to explain after the fact. Besides, I had IBS, right? Or perhaps this was an ulcer? I told myself that I would just ask my doctor at my next visit. I even suffered through one painful flare at a
hotel in Bakersfield, CA after a friend's wedding. I think I was so
eager to “feel good” and live our vacation to its fullest that I overindulged on food and libations. The unfortunate result was having to spend much
of the night curled up on the floor of the bathroom, vomiting and in pain. My poor husband - this was how we spent the Saturday night of our vacation, and I know he felt helpless.
At work, my productivity was declining. I was exhausted all the time, had trouble concentrating, and I didn't know what to make of it. How could I discuss what was going on? I couldn't explain it to myself, let alone my employer. I know it was frustrating for them, too. How many times can you say, "I'm not feeling well" before it sounds like an empty excuse? And on the outside - I didn't look sick.
My school work suffered as well, but I
continued with graduate school, determined to finish on the schedule I'd planned. Soon, not only did I feel rotten physically, but I also started to feel bad
about myself. What was wrong with me? I was having trouble completing tasks I knew I could do and began to feel like a failure. My self-esteem plummeted, and I felt weak; powerless.
My first ER visit
By spring 2005, my abdomen was tender and hurt
most of the time. I was anemic, had pain after most meals, and had sores appear in my mouth from time to time. I would wear pants that were too big, or unfasten them after meals because it hurt for them to press on my tender belly. I still assumed it was IBS, and was operating in somewhat of a fog, often blaming my busy schedule.
In late March - Easter Sunday, to be exact - I had a very severe flare, causing cramping, pain, and vomiting. This time, I knew I couldn't ride it out at home, and at nearly 11 p.m. my husband and I headed for the hospital.
At the Emergency Room, my symptoms were eased with an IV for hydration, Zofran (a wonder drug!) for nausea, and pain meds. Sweet relief! A Barium X-Ray was ordered to look at my gut and rule out appendicitis. It was a long night with a lot of waiting: waiting for doctors; for my stomach to be empty; for the barium to make it's way through my system; waiting for radiology.
The ER was under construction at this time, so patients were on gurneys separated by curtains. In the wee hours of the night, I overheard a discussion at the next bed between a patient and his physician, about his Crohn's disease. I remember thinking, "Wow, that must really suck." Not 30 minutes later, a doctor appeared at my side, having just read the results of my X-ray. She wanted to know if I had ever heard of Crohn's disease? Based on the inflammation they saw in my small intestine (specifically, the terminal ileum), this was a possibility, and they would be calling a gastroenterologist in on my case to consult.
admitted to the hospital, where I remained for 4 days, in which I also received and abdominal CT and was treated for my mystery illness (my discharge was delayed a day after I spiked a nasty fever). The plan was to first rule out food poisoning, then treat the inflammation as an infection. I was to complete a course of antibiotics, then get a follow-up CT once the antibiotics were gone to see if the inflammation in my ileum had cleared. If not, we would go from there.
On the way home, apparently still in denial and hungry, I had my husband stop at a drive thru so I could pick up some french fries. After 4 days of hospital food, I was craving them (genius, right?).
Things were pretty quiet in the weeks after my discharge from the hospital, and I was a bit alarmed at my experience. However, I was also relieved and hopeful. Maybe I just had a horrible infection and this was it - we treated it and I would be done!
I had my follow-up abdominal CT a few weeks later, and about a week after that, I called the Nurse
Practitioner at my clinic to check on the results. My second CT showed no
change to the inflammation (which was actually scar tissue),
indicating terminal Ileitis (Crohn’s Disease) was likely. I was given this news over the phone,
and was then mailed a fact sheet about Ulcerative Colitis.
My husband is traveling for work this week. So it would stand to reason that by the end of the day, my hips and back ached, I was sneezing, had a sore throat, and a headache. Murphy's Law in full force! I'm not sure if I should thank our two little boys for bringing home the germs, lack of sleep, my suppressed immune system, or all three. Probably all three.
Thank goodness I had made plans for easy meals this week. I made a batch of Macaroni and Cheese topped with crumbled bacon (recipe coming) for dinner last night so that we'd have plenty of leftovers and had made sure we were stocked up for freezer meals and fresh fruit. Tomorrow or Thursday we'll have breakfast for dinner. Yum - a family favorite!
I am also fortunate that I work for a company where I have the option to work from home. I had made arrangements this fall with my boss to work from home on days when my husband is traveling. I found that trying to wrangle the boys in the morning and evening, commute, complete two drop-offs and pickups, and taking conference calls in the car was only setting me behind at work and at home. I was also trying to come back from a flare up in September, and the exhaustion was making balance all the more difficult. I can't tell you how grateful I am for an understanding employer.
I'm glad to be keeping my germs home tomorrow and for now am hoping that Son #2 allows me to sleep through the night. Consider my fingers crossed! As usual - tomorrow is a new day.
Today I heard the news that Alexandra McHale, the 23-year-old daughter of Houston Rockets coach (and former Celtics player) Kevin McHale, has died due to complications of Lupus.
My heart aches for her family.
I can't help but also think of others who have Lupus and how their hearts probably skipped a beat upon hearing this news. Or of other parents whose children suffer this disease, and the lump of fear that developed in their throats, hearing her age. Or of the children who either have Lupus or have a parent, family member or friend with it, and the questions and fear it will conjure up for them.
Like Crohn's, Lupus is an autoimmune disease in which your immune system mistakenly attacks healthy tissue. With Crohn's Disease, the target of the immune system is the digestive system. But in Lupus, it is often more systemic - attacking any part of the body (I'll be honest - this fact makes me feel fortunate that I "only" have Crohn's). Like other autoimmune diseases, there is a spectrum of symptoms and severity, and there is no known cause or cure. For these diseases, with proper medical treatment, "most people can live a full life."
The death of Alexandra McHale also reminded me of the fairly recent passing of Jennifer Jaff, a legal advocate for the chronically ill who died of complications of Crohn's Disease in September. She was 55.
Jennifer Jaff's passing didn't strike me just because she had Crohn's Disease. It also struck me because I had contacted her in the first year after my diagnosis as I tried to understand the rights and options I had as an employee, and she was very understanding and helpful. It was this interaction and the work she did with so much passion that really underscored her loss.
When you have an illness - regardless of what it is, whether it is acute or chronic - there is some measure of comfort in hearing the words, "death is rare." But when you hear the news that someone has succumbed to the complications of the same disease you're living with, it's a reminder that it can happen. That even though statistically it is rare, you could fall within that margin.
Two talented women unfortunately fell into this "rare occurrence", and are gone long before they should have been. Tonight, I am thinking of them and their families, and hoping that medicine can continue to close the door on the margin that nearly 3 million people walk along.
Today has been full of catch-up at work (my inbox has been quiet the day before a holiday), and life maintenance, and getting ready for Thanksgiving. I'm fortunate to be able to work remotely when needed, which was very convenient today for the "life maintenance" part.
It does not cease to amaze me how high maintenance life can be some times. Today we had a new garage door opener installed (wow, the new machine is quiet!) and also had a company here to give us an estimate on a new furnace and a/c installation. WOW! <insert horrified scream here>. We had replaced the units at our old home, so there wasn't a lot of sticker shock here, but that was 10 years ago and...just...SERIOUSLY!? It's not like we get to invest this money and have much to show for it (save for cheaper utility bills thanks to higher efficiency). We don't get to wear it, drive it, watch it or sit on it. We won't have friends over for dinner parties and haul them to the utility room to show off our new furnace ("Yes, doesn't the color go well with the water heater?").
Let's just say that today I am thankful for the financing plans available for new HVAC.
Yet, even with something as boring as a new furnace and air conditioner, I have my condition in the back of my mind. Yes, we can finance this expensive thing, and somehow work this into our budget, but as I look at the numbers, I can't help but think, but what if I get sick?
But I have limited control over that. All I can do is take the best care of myself that I can, and we can only plan the rest of our lives as well as we can. We've been doing that for 10 years now, and we'll continue to do that.
So I go back to being Thankful. For my husband, for my children, family, friends, home, our jobs, and so many other wonderful things in my life. Especially having the next few days off - I could really use a break...and I'm really looking forward to those sweet potatoes.
As I've mentioned, I love to cook. Having kids has drastically changed the menu offerings in our house as well as the complexity of the meals. (Actually, our unwelcome house guest, Crohn's, has done that, too.) But mealtime is family time at our house and cooking for my family makes me feel so connected to them; so maternal. It fulfills me in so many ways - and so I try and cook at least one really good, unrushed meal a week. Food for the soul, so to speak.
I've always tried to eat healthy, but am more concerned about nutrition now than I ever have been. Depending on how I'm feeling, planning meals can be a challenge. How do I balance flavor + nutrition + picky eaters + tummy trouble without having to cook multiple meals?
I've met with a Registered Dietitian available through my company a few times to help offer some suggestions, and it was through her that I got the following recipes.
In honor of Thanksgiving: turkey cutlets and glazed veggies! I loved these recipes because they were delicious and easy to make. The cutlets are low in fat, high in protein, and cook quickly. The vegetables are delicious - and depending upon how well you tolerate vegetables, you can cook them longer to make them easier to digest. Our kids loved the carrots. I happen to love Brussels Sprouts, and they are not only a good source of iron, but an excellent source of vitamins C, K, and A.
**Side note: Please excuse my photography and fine Corelle plates**
Turkey Cutlets with Pancetta
1 1/2 pounds turkey breast cutlets (about 8 cutlets)
1/2 tsp. salt
1/8 tsp. freshly ground black pepper
Cooking spray (I used olive oil mist instead)
1/3 c. thinly sliced pancetta (approx. 1 oz.)
2 TB thinly sliced fresh sage
3/4 c. white wine
1/2 c. fat-free, less-sodium chicken broth
2 T. butter, cut into small pieces
1. Sprinkle turkey evenly with salt and pepper (you could probably omit the salt, as I found the final product a bit salty). Heat a large non-stick skillet over medium heat. Coat pan with cooking spray. Add half of turkey to pan; cook 1 minute on each side or until browned and done. Repeat with remaining turkey; keep warm.
2. Add pancetta and sage to pan; cook 3 minutes or until pancetta is browned, stirring occasionally. Add wine; bring to a boil. Cook until reduced to 1/2 cup (about 3 minutes). Add broth; bring to a boil. Cook until reduced to about 2/3 cup (about 2 minutes). Remove pan from heat; stir in butter. Serve with turkey.
Per serving: Calories
269, Calories from fat 31%, Fat 9.1g, Saturated fat 5g, Protein 43.1g,
Carbohydrate 0.8g, Fiber 0.0g, Cholesterol 126mg, Sodium 595mg
Glazed Brussels Sprouts and Carrots
2 pounds baby carrots
2 pounds brussels sprouts, trimmed and scored
6 TB butter
1/3 packed brown sugar
1 TB ground black pepper
1 1/2 c. chicken broth
1. Blanch carrots in a large pot of boiling water until crisp-tender, about 4 minutes. (You can tell they are ready, as the color gets vibrant.) Transfer carrots to a bowl of ice water using a slotted spoon. Return water to a boil. Add sprouts and blanch until crisp-tender, about 5 minutes. Transfer to another bowl of ice water. Drain vegetables, and refrigerate if making ahead.
2. Bring broth, butter, and brown sugar to a boil in a large, heavy skillet ( used the same stock pot I boiled the veggies in to reduce the number of dishes to wash). Stir until sugar dissolves. Boil until reduced by half, about 7 minutes. Can be prepared 6 hours ahead; if making ahead, return to boil before continuing. Add carrots. Cook until almost tender and sauce begins to coat, shaking pan occasionally, about 6 minutes.
Add brussels sprouts and pepper. Cook until heated through (or longer, if your tummy needs it), stirring occasionally, about 4 minutes.
Calories 208, Total Fat 9.4 g, Saturated Fat 0 g, Cholesterol 23 mg, Sodium 323
mg, Carbohydrate 29 g, Fiber 7.8 g, Protein 5.7 g. Daily Values: Vitamin A 90%,
Vitamin C 100%, Calcium 3%, Iron 8%. Percent Daily Values are based on a 2,000
For most people who are, or have at some point, become sick with a serious illness (whether chronic or acute), there was a time when they were "healthy." They existed pre-illness, pre-symptoms, pre-diagnosis, with no idea what lay ahead.
I want to make it clear here that there is a difference between "pre-illness" and "pre-diagnosis". Before you are diagnosed with any affliction, you become ill. There is some symptom, some pain, some reason that took you to a physician's office in the first place ("pre-diagnosis"). That first visit that sets you down the path of trying to find the answers you seek about what is happening...to find out what has suddenly gone so wrong.
But before all of that, you are healthy ("pre-illness"). When you're healthy, being sick means getting the flu, or a cold, or strep throat; something that can be cleared up with time or a course of antibiotics. I consider this phase the beginning of my diagnosis story.
Once upon a time, I was a healthy newlywed. My new husband and I had purchased a home, hosted our wedding, and adopted a puppy. We had met in college three years prior, and each took jobs in the same city following graduation.
Life was not perfect - we had some private family issues to work through - but it was very good. We spent significant amounts of time (and money) on home improvement projects in our first home. We hosted parties and took vacations. We spent time with friends, golfed, partied, enjoyed happy hours. I had plans to start graduate school a year after getting married. We wanted to start a family after I had completed my master's degree.
We loved to cook together. On nights where we decided to stay in, just the two of us, we sometimes wouldn't sit down to dinner until late into the evening, we involved ourselves in cooking so much. We loved to try new beers, wines, and foods.
Before I was a newlywed, I was an independent young woman. I had procured my first job and apartment. I played basketball on a city league with friends and coworkers, and worked out regularly. I didn't smoke; I loved my coffee.
I loved to have fun. I still do.
That's an interesting thing, I notice. To sometimes speak of myself, or think of myself, in the past tense (I loved to...). On one hand, I AM the same person! At the root of it all - I am ME. I want to be who I was, be treated like the person I always have been. Yet on the other hand, things are different. I have been scarred - literally and figuratively. I have had to change my lifestyle and my mindset, and as such, I have changed. And so, part of me mourns the loss of the more lighthearted me. The one who didn't have to worry as much. The more spontaneous me.
This story isn't really about who I was. It's the beginnings of the story about how I have evolved into who I am. And becoming a wife, becoming sick, and becoming a mother all helped shape me.
Was it really over a week ago I decided to pick up my blog again? It's still pretty dusty, and I've wondered more than once in the past week why on earth I think I could keep up a blog, with all I've got on my plate. Not to mention how I plan to keep up a blog (not to mention the timing: hello cold, flu, and holiday seasons!).
But I think this will be a healthy outlet for me. Even just writing in the past week has stirred so many ideas, memories, and emotions for me - I have a long list of things I can't wait to write about, from my diagnosis story to parenting challenges, to managing fatigue and cooking healthy for my family.
I've been encouraged to write about my experiences, and I do want to share them. I don't plan to share everything, though. There are some things that will remain private. Some stories and experiences are just for my husband, sons and me, and others aren't mine to share. But, the exercise of writing is my first and foremost goal here. Followed closely by sharing my experience in hopes of helping others, and finally, by being able to share my perspective of living, working, and parenting with a chronic illness.
I do look forward to seeing how this blog evolves and takes shape.
Yep, having Crohn's stinks. And depending on the day I'm having, what I ate, or even the time of the month, it can literally stink. Some days, my children are not impressed (and my husband merely tolerates it). BUT! I discovered a great odor eliminator while hospitalized nearly 2 years ago:
I love this product, because it doesn't have much of an odor (I don't like stuff that's too perfumy and use the unscented version), and it really does get rid of the smell. Bonus: it comes in a handy 2 oz. size that's easy to bring along.
When you have a chronic illness, you think about many things differently. For example, your time, energy, money, and even your days off are spent differently. You carefully allocate each of these resources because you know they are limited, and because your next rainy day could be tomorrow.
Medical Benefits are another thing I consider much differently than I did before I became sick. In the U.S., it's currently open enrollment time for many employers' benefits plans. Open enrollment for the 2013 coverage period may already be over for some organizations; at my company, enrollment closed last week. Even so, I'd like to share some of the lessons I've learned in my own experience of enrolling for and using my medical benefits.
Evaluating Employer Medical Plans
Let's face it: most health plans are set up to cater to the healthy. There are some basic tips that every person should know such as:
1. What are the premium costs - per paycheck, month, year?
2. What are the estimated co-payments and out-of-pocket expenses for doctor's visits and medications?
3. What are the deductibles and maximums for out-of-pocket expenses?
No one ever plans on getting sick. But when you have a chronic illness, there are additional needs to plan for. Here are some additional suggestions on what to consider when enrolling for medical coverage:
1. Are the providers and specialists you are currently seeing in your network? Will that change this year?
2. What are the co-pays and out-of-pocket expenses for specialist visits? Do they vary from seeing your Primary Care Provider (PCP)?
3. Will you need any medical procedures in the next year? What is the coverage for those? If necessary, you can contact your provider's office to get a cost estimate. Make sure to ask if there are associated services that would be billed separately from the procedure, such as anesthesia or a facility fee.
4. What are the co-pays and costs associated with an ER visit? Is the co-pay waived if you are admitted?
5. What are the costs associated with using an ambulance? (This is a service I never had on my radar, even after being diagnosed with Crohn's Disease. However, after suffering an emergency that required it, that has changed. I'll address my experience in a separate post.)
6. Are you planning to travel, and to where? Do you know what your coverage is if you are out of state?
Finally, as was already addressed, what is your coverage for prescriptions? On our current plan, this was a key factor for us, as some of my meds are not considered "preventative". Thus, instead of paying a co-pay, I must pay the full retail cost of the drug. This amount does get applied to the deductible and the plan's maximum out-of-pocket (MOOP), but early in the year, this can be expensive (a 3-month supply of Pentasa is approximately $1,200). Because of this, I pay close attention to what formulary tier my prescriptions fall into, as this greatly impacts our out of pocket expense (more on prescription benefits and prescription tiering coming soon).
Be sure to check the deductibles and out-of-pocket maximums for both individuals and family. This could impact your expenses, as well, depending upon each dependent's needs. If you have multiple people working outside the home, you may also consider the cost/benefit of splitting the coverage for your dependents, based on what the individual and family needs, coverage premiums, and benefits are.
Spending accounts and their limits should also be carefully weighed in your decision, as these accounts allow you to save pre-tax dollars to be used toward your out-of-pocket medical expenses.
High-deductible health plans are often offered with a health savings account (HSA). In 2013, the contribution limit for individuals is $3,250 and for families is $6,450. Unused dollars can be rolled forward into the subsequent coverage year, or be moved to another plan.
If you select a health plan with a lower deductible, you may elect to contribute your pre-tax dollars to a flexible spending account (FSA). However, in 2013, the limit to FSA's has dropped to $2,500, and for now the funds are "use-it or lose-it", meaning if you haven't spent the balance by the end of the plan year, the remainder gets forfeited (usually to your employer).
Once you calculate your estimated out-of-pocket expense on each plan, make sure to take into consideration how much of that may be covered by a spending account and what you would save in tax dollars. Finally, add in the annual premium cost, and you should have a good idea of which plan is best for you.
Benefits enrollment has never been a fun task for me, and it's even more difficult since becoming sick with a chronic illness. But given the current unemployment rate in the U.S., I consider myself extremely fortunate to have a job and the benefits that come with it.
Our poor 3 y.o. is going through a phase where he's afraid of things that go bump in the night (more specifically, "monster aliens, robots, and bad guys.") Which means that right now, bedtime at our house can be a bit of a battle. We are trying to work with him against those imaginary demons, but mostly for now, it just feels like we are battling our son. Some nights are worse than others, and we go through streaks of good and bad. Yes, we've tried most anything. Snuggling until he's almost asleep; limiting nap; reading; sitting outside is room; monster spray; ignoring him; loving him; putting a stuffed bear "on guard" outside his room. We are consistent in that we don't let him get up again, and always lead him back to his room. Experience with our older son tells us that consistency is key, and that he will eventually grow out of it.
While bedtime can be a challenge, what really kills me is when he wakes in middle of the night. When our boys were infants, we fell into a rhythm. Feedings typically came at around the same time every night, and we were lucky; they were up to be changed and fed, then back off to sleep. My body adapted, and I learned to go with it.
But now the nights aren't so predictable. Son #2 is not up every night, but he's up regularly, and it's not always at the same time of night. I'm don't get angry with him; he's a small child, and helping him is my job. He only wants mommy (never daddy!), and once I'm awake, it can be hard to settle back in.
Those are the hardest nights: when I can't fall back to sleep. Last night was one of those. I'm not certain what time I was awakened, but I know I was still awake around 4. Have you seen 4 A.M. lately? It looks something like this:
Turns out, 5 A.M. looks like that, too.
If you struggle with fatigue at all, you know how precious sleep can be. Some nights, once I'm awake, my brain turns on and I can't turn it off. Other nights, my anxiety about needing rest won't let me sleep (a sick irony).
Here are the strategies I have employed to try and fall back asleep once awakened:
1. Focus on breathing. Take deep breaths, in through the nose, out through the mouth. Exhale fully.
Let your breathing fall into a pattern and allow yourself to drift off.
2. Body scan. I learned this relaxation technique in a yoga class, and often it's quite effective. Starting at your toes, and moving up to your head, focus on each part of your body, relaxing yourself and releasing tension.
3. Read. Keep the light low; you don't want to wake yourself up more than you are. But, grabbing a magazine or book can help distract the mind and allow yourself to drift back off to sleep.
4. Make a list. If I've got a lot of things swirling around in my head, then getting them down on paper often allows my brain to relax. I can simply worry about it in the morning. Admittedly, I have made the mistake of doing this in the dark, and was unable to read my own handwriting in the morning. So, for this, you should allow yourself some light, too!
This article at Health.com recommends that if after 15-30 minutes you still can't sleep, you should get out of bed and do something boring (keep the lights low, and don't sit in front of any screens, though!). This is a good tip, and one I should have used last night. http://www.health.com/health/condition-video/0,,20193962,00.html
This year, my husband and I decided that doing a "Thankfulness Project" with our boys would be a good way to teach them about gratitude, thinking of others, and where the Thanksgiving holiday came from. I think that this has not only been good lesson for them, but also a good exercise for me. Gratitude is a great way to keep things in perspective, especially after a recent flare and feeling frustrated and down.
Since our boys are quite young, we are keeping it simple, so as to keep their interest and because I didn't want to set us up for failure (as we all know, life can derail us - why set the bar too high for our first attempt at this?).
For the month of November we are:
1. Sharing what we are thankful for each night at dinner. This has been easy and fun! We are also writing down the responses each child has, as it will be fun to look back at when they are older. This exercise has been particularly entertaining with the 3-year-old, mostly because of our timing for doing this in the day - he's often thankful for food (most often, "Mac-n-Cheese", even if that's not what's for dinner!).
2. Identifying at least one person we are thankful for and expressing our gratitude for them. We have not yet figured out what our "grand gesture" will be, but we have worked on Thank You notes for people who have expressed acts of kindness, and talked about how thankful we are for their actions, as well as how important it is to express our thanks (we already do this for gifts received, but it's still a good lesson outside of that).
3. Finding a charity that serves someone less fortunate than we are and giving back. For this, we actually selected two charities. The first charity is a local hunger relief organization that we contributed money to. While we did discuss what we are doing, why, and the fact that not all families can put food on the table, it's still a pretty abstract concept to children to see their parents write a check. So, we also decided to do something more "hands on" by giving a gift to a young boy via "Operation Christmas Child" through Samaritan's Purse. Our oldest helped me shop for items to fill our shoe box, and we had a blast doing it!
While we get to know each other a bit, I'm going to start with some of the basics for folks with IBD. Having a chronic illness impacts your life in many ways, and one of the most significant is "quality of life". Even when it comes to walking out the front door (or perhaps, you prefer the side or back door, whatever), you need to be prepared.
Here are some of the provisions I keep handy:
1. Clean underwear. You don't need to use your imagination here. Sometimes, your gut is suddenly horribly unhappy, and you just couldn't get to the restroom in time, or there was an unexpected leak in your gasket. I keep mine in a Ziploc bag. First, this serves a way to keep the clean ones clean and discreetly folded. Second, it provides a place to seal up the soiled underwear, should you want to either take them home to launder or even throw them out.
Tip: Notice that they are black. If my Crohn's is acting up, or (for you ladies) if it's "that time of the month", I opt for black underwear. I do this because black doesn't stain.
2. Portable wipes. These are the generic Walgreen's brand, but they work just as well as the Preparation H brand, and are less expensive. These are great not only for cleaning up an accident, but for days when your bowels are more active and you need to clean up.
3. Barrier cream. This is not a topic I discuss freely with friends. But yes, my nether region can be fairly sensitive, and some days, I need a cream to help protect it. If I don't, I get irritation and rashes (A+D ointment is particularly effective for rashes). It's miserable to be in pain "down there" and honestly, those desk chairs at work don't offer a lot of comfort for a sore bottom. This helps.
I found the Aquaphor Healing Ointment when I had babies. It comes in a travel size tube, perfect for toting around, and it's nice to have something that's not conspicuous! At the store, it can be found with the baby diaper creams.
Side note: I'd like to publicly thank my Crohn's Disease for my hemorrhoids. Fortunately, using the wipes and Aquaphor helps keep them happy, but as a last resort, I do sometimes use Preparation H cream (not pictured). I prefer the variation with hydro cortisone.
4. Imodium, or another variation of Loperamide. A must-have. By now, I know my body well enough that I am aware of when I should take some in advance (for example, before a big presentation that I'm nervous for). I keep a bottle at home and a bottle in my desk at work, but I like the individually wrapped caplets for traveling or being out and about, as they are easy to put in my purse or even in my pocket.
There you have it. Your IBD pack-n-go kit. For those of you who already use one, did I miss anything? What else do you keep in your emergency kit? For anyone who's new to this: I hope you find this helpful. And finally, to anyone who doesn't have to worry about this: consider yourselves lucky. You have extra points on your quality of life scale!
It was seven years ago in May since my diagnosis of Crohn's Disease, and since then I've learned to deal with the meds, fatigue, and various symptoms as they wax and wane.
In January, it will have been 6 years since becoming a parent for a first time, bringing me joy, love, wonderment, and changing me in so many ways I never expected. But, quite frankly, becoming a parent has also kicked my ass in ways I never expected.
Take for example, the bugs my two young sons bring home (not the kind with legs, although they bring lots of those home, too).
Son #2, age 3, came down with a fever and stomach bug last night. Poor little guy. My heart just breaks for my kids when they are sick. Especially when they are so young; their fevers can spike so quickly, and they can't always articulate how they feel or what they need. All I could do was snuggle, kiss, and hydrate my little guy...just like only 6-7 weeks ago the last time he was sick. His poor little immune system is taking such a beating. Unfortunately, my husband's wool jacket also took it's own beating after our son got sick all over it. I'm not sure the coat will make it.
It's that time of year in the Midwest, though. I am fortunate that my husband has enough PTO banked and was able to stay home with our son, especially given that my PTO bank is empty. But oh the guilt of leaving when he asks for snuggles. I'd rather curl up with him for the day. Not today! I had other things to do.
I had actually made myself an appointment to see a doctor to have my 5-week-old cough checked out. (I had already been seen 4 weeks ago, when I was given cough syrup with codeine and a Z-pak. The cough got better, but never went away.) One nebulizer treatment and X-Ray later, I was given a prescription for an inhaler and prednisone. The physician I saw (not my regular doctor) asked if I'd ever been on steroids before. Hello? History of Crohn's? Yes, I could probably write my own prescription for a prednisone taper.
So, I'm on steroids for my lungs, and our winter-time battle of the crud has begun. We're armed with Lysol and hand sanitizer! I do hope my gut can take it.
Well, then. That wasn't much of a start now, was it?
It's been 18 months since I started (and last posted) in this blog. My vision was that this blog would be a therapeutic place for me to write; to hopefully connect with other people who sometimes struggle to balance a busy life with a chronic condition (not just Crohn's or Ulcerative Colitis). But I didn't get back to it, even though I have a long list of posts swirling in my head.
Sometimes when my Crohn's is active, I feel tired and overwhelmed, and like I don't have the capacity to write. And yet, during those periods of time where I feel good and energetic, I just sort of want to go with it, and ride the wave of not "being sick", even though I think it would be good for me to write (audience or not). So, in the past year and a half of some extreme ups and downs, sickness, and health, and good intentions - I didn't get here.
I've decided to try again...to get these thoughts and feelings out. From being a mom and wife (in sickness and in health) to an employee, advocate, and friend; from dealing with travel, provisions, fatigue, aches, and pain to how to interpret medical benefits and plan for that inevitable rainy day. I want to put it out there - as a healing and coping mechanism, and hopefully as a way to connect, help, and learn.
Bear with me as I try. As I mentioned, I have so much to say!