Monday, December 2, 2013

Crohn's and Colitis Awareness Week, December 1-7

Hello! I'm back, after an unexpected 6 month hiatus.

Where have I been? Busy with summer, road trips, family affairs, and taking some time to heal. But I'll get back to that.

In 2011, the U.S. Senate designated December 1-7 as Crohn's and Colitis Awareness week, and I would like to take this opportunity to 1) Help raise awareness and 2) return to my blog.

I'll share here what I shared last night with my friends on Facebook:

Today is the first day of Crohn's and Colitis Awareness week, which was first established by the Senate in 2011 to encourage people in the U.S. to join in the effort to cure these diseases.

I was diagnosed with Crohn's in 2005. I've had one surgery, 4 hospitalizations, and several ER visits. I'm one of the lucky ones. I didn't "catch" it, nor did I do anything to cause it. "Eating healthy" won't fix me, nor is Crohn's limited to the digestive tract. Even when things are going well, I can suffer from pain, fatigue, and malnourishment, among other symptoms. Crohn's can present life-threatening, and even fatal, complications.

This photo was taken in 2011, when I was hospitalized and Chris brought the boys to visit. It was a bittersweet moment, but given the complications I suffered, I was glad to be alive.
If you have questions, I am happy to answer them, and am always thankful for people who inquire or provide support. Thanks for listening - Carpe Diem!


I hope this finds you well!

Friday, June 7, 2013

What is IBD (and what's the difference between Crohn's and Colitis?)

It's difficult to explain what IBD is, but this video does an excellent job of explaining the diseases in regular language, and with illustrations. If you have a few minutes, please take the time to watch:

Last Day of Kindergarten

Yesterday was W's last day of Kindergarten. Doesn't he look enthused about it?

W on a cool, rainy morning. Where is spring this year?
Actually, he was. He was also sad, because he had a great year, and loved his teachers and will miss them. What a lucky kid! We've really had such a great experience with his school.

I know that this is one of my child's milestones, but sometimes I am amazed at how quickly time goes, and how much life has changed in the past 6-7 years. We've managed to get our first baby through Kindergarten. How did that happen so quickly? Weren't we just painting the nursery? Wasn't it just yesterday that he cut his first teeth?

One of my favorite things about having children is the opportunity to see things anew through their eyes. This includes Kindergarten, and I am enjoying it so much. Life for our son is still so amazing; it's simple and new and fun. As adults we tend to muddle things up and over complicate things. Do we do that to ourselves, or is that just the way it is?

I know that next year will bring more homework, and I'm not looking forward to it, because the little we had to do this year was already a challenge to fit into our schedule. But we'll worry about that in the fall. For now, I'm just going to take in our son enjoying his summer, and learn as many new things along side him as I can.

Saturday, June 1, 2013

Inspirational

If you haven't heard of Zach Sobiech, his battle with terminal cancer, and his song, "Clouds," which has risen on several music charts, please take the time to learn about him. Zach died on May 20th due to a rare form of bone cancer. Here he is performing "Clouds," one of the songs he wrote and recorded in his final months of life. Listen to it, and then download it.
 

Because Zach's story has been covered by local media, I've been following it for awhile. To say that Zach is an inspiration somehow feels like an understatement. This kid was utterly amazing, and so is his family.

Today, I finally took the time to sit down to watch the entire "My Last Days" documentary filmed by SoulPancake. It's just over 22 minutes long, and I encourage you to watch it, too. Make sure you have some tissues handy, because it will move you to tears. But it will also make your heart swell.

Friday, May 31, 2013

Lucky Me

Today is the last day of May, which was Inflammatory Bowel Disease (IBD) Awareness Month. May was also the host of awareness campaigns for several other illnesses, including Cystic fibrosis, Celiac Disease, Arthritis, and ALS, among others. For each of these diseases, there is nothing that sufferers can do to prevent their illness, nor is there a cure.

 
All of these awareness campaigns are worthy of our attention, as well as those for so many other illnesses - those that can be treated, and those that cannot - that exist today. There are a lot of them, and they all suck. Cancer sucks. Arthritis sucks. ALS sucks. IBD sucks. No one who suffers any of these fates is a winner. By raising awareness for our plights, we can raise funding for research to improve treatments, identify preventative measures, or find cures. Breakthroughs in some areas may help make headway in others, and frankly, I support all of them.

And if you’re healthy, why should you care? What if it were you? What if your spouse, parent, or child became ill? What if through research we were to discover that there is something we could do differently to prevent some disease, such as autoimmune disorders, which are occurring more frequently, especially in children? Prevention is a savings for all of us, medically and economically.

As far as diseases go, I’m well aware of IBD, because I’m a lucky Crohnie. Yes, I said lucky. You see, I’m alive, and at one point, my life was threatened by this ugly disease. Did you know that Crohn’s complications can do that, sometimes without notice? I also have a job. Some IBD sufferers are so disabled by the disease that they can’t work. I’m also fortunate because my Crohn’s wasn’t diagnosed until I was an adult, giving me the freedom to grow up healthy and without disease. Currently, thirty percent of IBD diagnoses occur in children, some as young as toddlers. No child should have to be sick with any serious disease, ever.  

I consider myself lucky because I have responded fairly well to medications, making my symptoms more manageable, which isn’t the case for some IBD sufferers. I have health insurance, and can afford to pay for my care, which is costly. I have a supportive husband, who I love immensely and with whom I have a strong marriage (incidentally, it takes a LOT of work). I was able to get pregnant and have two beautiful, healthy children. I have a supportive family; parents who are willing to drop everything and drive 4 hours in an emergency; friends who are willing to pick up our kids; neighbors who bring us meals and ask how I’m doing. See? Lucky me.

I also know that it could be so much worse. My symptoms could be worse, my medications could stop working, or I could have another illness that would place much more burden on my life, or take it away.

I suppose it’s the devil you know versus the devil you don’t?

Any of us who are afflicted with a serious illness will have a different journey than we once thought we had set out upon. This is hard to accept, and at times can bring us to our knees. But we’ll get up, dust ourselves off, and forge ahead, because that’s all we can do.

We will also fight for better treatments, awareness, and cures. I have found my voice. I will speak up for myself and others with Crohn’s disease, because it is misunderstood, a fact that is incredibly frustrating. I will speak up for others who fight their own battles, because it’s the right thing to do – and we’re all in this together.

Happy <insert the name of your disease here> Awareness Month! Be well, my friends.

Thursday, May 30, 2013

How to Pack for a Road Trip with Kids

We recently completed a road trip from Minneapolis to Nashville, which is about 13.5 hours of drive time one way, not including stops. I'm happy to say we made it safely, and that the boys were excellent travel companions. There were some incidents of quarreling, or in which a tired and bored 3 year-old threw objects in the car, but honestly, it was a great trip. When we set out, I had no idea what to expect, but as the miles went on, I found myself unwinding and enjoying my role as "mom" thoroughly, and we made so many new, fun memories.

We made the trip in two legs, with a stop in St. Louis both ways. On the way down, we spent some time there exploring and toured the Gateway Arch before completing the last stretch of our drive. The boys thought it was amazing, and it was.

Yes, we went wayyyyy up there!
Even though we make regular (much shorter) road trips to see the grandparents, there were still new things to be learned in packing for this trip. Being that summer and thus, family vacations, are upon us, I've made this handy list of how to pack for a road trip. Some of it is satirical, but all of it's true. I hope you find at least some of it useful. Enjoy!

  1. Four to five weeks before your trip, start making lists of things you need to do to prepare for your trip, including finding/purchasing necessary clothing. Curse every time you lose one of these lists, until you finally make one central, combined list. Travel items for the children will include things like:
    1. Snacks ("healthy" ones - like grapes, organic granola bars, pretzels, gold fish, and gummy bears)
    2. Reusable water bottles and snack containers (bring a small bottle of dish soap to wash them)
    3. Books
    4. Whoopie cushions
    5. DVD player and movies
    6. Travel-sized Etch-a-Sketch or Magna-Doodle
  2. Fill/Refill any prescriptions you’ll need on your trip, and plan to pack extra doses, as well as your physician information. Upon seeing the cost, give your computer monitor the middle finger.
  3. Purchase new sandals for your six year-old while running other errands, all the while congratulating yourself on how very efficient you are at checking items off your list.
  4. Try hard not to show your annoyance when six year-old doesn’t like the sandals and/or they don’t fit right.
  5. Return the sandals, and bring six year-old along with you to get appropriate footwear.
  6. Schedule your vehicle for maintenance, and hope they don’t find anything expensive that needs fixing.
  7. Have your husband fix that tail lamp that you accidentally cracked with the garbage can (it’s cheaper than having the shop do it), lest you give the police in another state a reason to pull you over.
  8. The weekend before your trip, start piling things you will need on the dining room table and make sure to lose at least one item you need before the trip in the shuffle.
  9. Start loading up the kid's car organizer, so they can reach their items during the trip. (Seriously, this is one of my favorite purchases of all time.) Some new travel items we bought specifically for this trip include:
  10. Both kids kept busy with these dry erase boards, which
    we can use in the house, too.
    1. Two of these letter and numbers dry erase boards by Mead, along with a new set of washable dry-erase markers; and
    2. This Melissa and Doug Travel Memory Game
      The reason you want to buy washable markers.
  11. Ask a neighbor to water your flowers even though it’s going to rain the whole time you’re gone. When she offers to pick up your mail, thank her profusely because you completely forgot to stop the mail.
  12. Two nights before your trip, stay up too late trying to finish laundry and packing, then fall asleep on the couch with all the lights on when you sit down to take a break. Stumble up to bed at 1 a.m., and wonder who the hell the old woman is looking at you from your mirror the next morning.
  13. Take a deep breath and smile when, 24 hours prior to departure, your husband asks what he should wear to the wedding you’ll be attending on Saturday.
  14. The morning you are to leave, scramble around the house, forget your neck pillow, load up the car, and hit the road an hour behind schedule. Have fun!

 
 
 
 
P.S. If you're a crohnie, don't forget to pack some of this. Travel isn't always nice to tummies.
 


Monday, May 27, 2013

A Week Away

Our family just returned from a six-day excursion to Nashville for a family wedding. I had initially thought that I might get a post or two up while we were gone, but once we left, I was glad to be away...from everything! Traveling with two children doesn't necessarily make for a relaxing trip, but that wasn't the point. We had the chance to spend some wonderful time together (often in small spaces), reconnect, and make some fun memories. The boys were wonderful travelers, and the trip went better than I could have ever hoped. Even so, it's good to be home.

I hope you had a safe, relaxing, and memorable Memorial Day weekend. And if you or your family members have served our country...Thank You.

At a family brunch at "I Dream of Weenie" in East Nashville.
I highly recommend!

Friday, May 17, 2013

A 'Siri'ous Misunderstanding

On Sunday afternoon, the boys were showing Grandpa some cool things they like to do on the iPad. They don't get much access to the tablet, so this is still a pretty novel activity. On this day, we were using Google Earth to look up our home, the grandparent's house, and local landmarks. Then the boys wanted to ask Siri some questions.

This is usually fun and educational. W typically asks questions such as, "How many miles away is the moon?" and "What is the weather like today?" I'm not sure if it's the pitch of their voices, or that they don't enunciate very well, but Siri often does not understand what the kids say.

Three-year-old S-Man wanted his turn, and exclaimed, "I'm three!" Which actually sounded a lot like he said, "I'm free!"

We watched as Siri "thought" about this request, and finally responded with, "I'm sorry, I couldn't find any matches for, "I'm horny.""

Oh, crap. We need to get Siri's hearing checked.

At first, time stood still for a second, as I stared at the screen in disbelief. Did she really just say that?

Then, my brain started to quickly leaf through the pages of my mental parenting guide. But for this for this situation, it came up empty. There was nothing remotely related to, "Siri mistakenly thinks that my child told her he's horny."

Next, I got the giggles. I looked over my children's heads and realized that my husband and father were also trying to stifle their laughter and smiles. Deep breaths. Use your hand to force the corners of your mouth down.

My husband, who was holding the tablet, quickly removed Siri's response from the screen and we tried to direct their attention to something else.

"What does 'horny' mean?" W asked.

"Oh, that's just a grown-up word," I responded with a wave of my hand, hoping he'd relegate it to the same corner of his mind as such grown-up terms as 'isotope' and 'paradigm shift'. Thankfully, there was no context to the word (I don't even want to know what would have come up, had Siri found matches for the search), so hopefully he thinks it is something he just needs more geometry to understand.

"Oh," he responded, and then we moved on.

Parental controls and supervision are tools you can use to protect your kids from they don't need to see or hear yet at tender ages. But in this case, neither one of those would have worked. There are those parenting moments when unwanted things - a sudden, nasty fall or an erroneous result from Siri - in which things happens quickly and there isn't a single thing you can do to stop it. This was one of them.

I wonder how long it will be until we're brave enough to let the kids ask Siri questions again?

Tuesday, May 14, 2013

My Diagnosis Story, Part IV: Recovery...and Acception

This is the final installment of the 4-part story of my diagnosis of Crohn’s disease in the spring of 2005. Links to the preceding parts can be found here: Part I, Part II, and Part III.

Going home was a major first step in recovering from surgery. It was an exciting, yet scary prospect. I was finally able to go home to familiar surroundings where I could sleep through the night without being awakened by the noises of a hospital or vitals checks. But the safety net of having doctors and nurses around to help me navigate through this new world would be gone.

Before I left the hospital, there were many questions. Would I feel better after my surgery? (Yes.) When? (It could take up to 6 weeks.) What if the medications don’t work and my disease flares up again? (We’ll try different doses, or different medications.) Could I have children? (Yes, but I may have trouble conceiving due to abdominal inflammation and scar tissue.) Could our children inherit Crohn’s? (There is approximately a 5% chance.)

I never did ask one scary question that was on my mind: could I die? I kept asking the other questions, and figured that if death were an issue, the doctors would tell me. In my own research, I found the answer was: Crohn’s itself does not kill, but its complications can. If the disease is managed well and kept under control, patients can live a fulfilling life.

My Mom made the 4-hour drive to bring me home from the hospital and stay with us for a while. On the day I came home, Chris was busy fulfilling his duties as Best Man for one of his friends, and had a round of golf and bachelor party festivities to attend. I was glad for him; he had been through the ringer in the past few months, too, and deserved to go out and have fun. I, on the other hand, would be missing the bride's bachelorette party.

The first thing I did upon arriving home was to go to our bedroom and find my wedding ring. I could not wear jewelry at the hospital because of some of my tests and the surgery, so Chris had brought it home, and I missed wearing it. It was the only piece of jewelry I usually wore, and was a symbol not only of our love and marriage, but our “normal” life – the life I yearned to return to. As I came out of the bedroom, I nearly fainted again after going up a flight of stairs and being on my feet longer than I was accustomed to. Mom helped me sit down while, of course, gently scolding me (isn’t that what mothers do?  Thanks Mom - I love you).

Cocoon

I spent two weeks recovering at home before returning to work. Slowly, I was able to expand my diet. I cared for my incisions and figured out my medications (right out of the hospital, I was taking around 20 or so pills a day). I also learned how to give myself B-12 injections once a month, as the part of my body that absorbed that nutrient – my ileum – was now gone.

My main incision, 13 days post-op. Because my surgery was done laparoscopically,
my incision was small, compared to a regular resection surgery. I also had two
other small incisions from the scopes.
In the short term, I needed my incision to heal. My body also needed to heal – it had been very ill. Clothes hung on me, as I’d lost weight not only because of the malnourishment, but due to muscle loss from lack of activity. For the long term, needed to heal emotionally, too. I had been sick for a long time, but having surgery would not cure me. I was on the right path of being able to manage my symptoms, but had to adjust to the fact that life would not continue exactly as it had.

I had to become accustomed to living with a serious disease that came with medications, risk factors, and no cure. This new journey was forever, and extended far beyond my incision healing. I would have to adapt to the fact that through no fault of my own, my body had betrayed me, and no one could tell me why. This would take time, and I would grieve my health.

My life had been interrupted, but it was my goal to move forward and continue on as normally as I could, and so I found tasks that fit the bill. I had homework and exams to make up, as I missed the end of the semester at school. I sat at the kitchen table and wrote thank-you notes to the people who had visited or sent flowers or care packages. I also read and researched Crohn’s disease as much as possible. As long as I was armed with knowledge, I didn’t feel so powerless.

I do actually have fond memories of those recovery days. My husband and mother were wonderful support and took good care of me. The weather was sunny and beautiful. The house we lived in at the time was off of a pond, and in the spring, the frogs would sing at night. That memory is still a happy place for me – sitting on the deck, drinking herbal tea and listening to the frogs in the dark. I felt safe and protected from the reality of going back to work, school, and the life that was looming.

Forging a New Relationship with Food

To help manage my symptoms, I would need to figure out what foods my system could tolerate. I had met with a nutritionist while in the hospital, but she could provide little advice on what diet might work for me (not all nutritionists have so little advice). It’s not the same for every IBD patient, and beyond some of the standard advice – avoid greasy foods and alcohol; eat a low-residue diet when symptoms flare up – a lot of figuring it out would be through trial and error.

Navigating diet advice was, and continues to be, a dizzying prospect. For example:

Avoid fried foods. Many IBD patients can’t tolerate dairy, so avoid dairy. Unless, of course you can tolerate it. But dairy is an inflammatory food, so if you can ingest any, be very selective about which products you eat. If Crohn’s symptoms are acting up, eat a low residue diet (no raw veggies, nuts, seeds, etc.), consisting of things like white bread, rice, pasta, creamy peanut butter, and bananas. But, alter that to eliminate bread and pasta if you are also celiac (allergic to gluten), as some IBD patients are. However, even if you don’t have a gluten sensitivity, avoiding gluten may help your symptoms (but it may not). There’s the paleo diet, the specific carbohydrate diet (SCD), and the raw diet, among others. But be careful about certain raw foods if your immune system is compromised. Potatoes are easy to digest, but they are starchy and illegal under the SCD, if you’re following that diet. Make sure you are getting plenty of vitamin D. Getting nutrition from your food is better than from pills, but if your intestines are ulcerated and/or inflamed it’s hard to get it from food, so take vitamins to supplement. Avoid eating too much sugar, or if you’re a saint, don’t eat sugar at all. Honey is a good substitute. Avoid alcohol. Kombucha works well for some people, but is an acquired taste. Probiotics are good to help balance the bacteria in the gut. Ginger and cinnamon are anti-inflammatory foods and good for digestion. Avoid carrageenan, and consider eating organic and avoiding GMOs. Etc., etc.

Are you still with me?  Yikes, right?

I tread carefully, using a food diary, trial and error, books, and Dr. Google to guide me. I found that bananas, oatmeal, and hot tea are good at almost any time. Coffee, beer, or liquor are not. Orange Juice or eggs I cannot tolerate in the morning, but can later in the day. Pineapple will set off a flare. How I tolerate other foods is dependent upon my symptoms. When hit by a flare, I often resort to a diet of only liquids to rein it in, and then gradually add food back. On occasion, I throw caution to the wind, but usually pay for it. Eight years later, I’m still learning.

The Bill Collector

Medical bills from my first hospital stay started to arrive while I was still at home, and the bills from my second stay would come soon after. Oh, how I began to miss the days when I was so blissfully ignorant of health insurance beyond co-pays. This is when I learned that different services, such as radiology or anesthesiology, got billed separately and that each item had codes and a cryptic description. There were hospital charges, insurance reductions, copays, and amounts owed in dizzying lists. I received separate bills each from the hospital, my primary care provider, gastroenterologist, radiology, surgeon, and anesthesiologist.

The total charges as listed on the 33-page hospital bill for my second stay.
This excludes GI, surgeon, radiology charges, etc.
All told, my medical costs that spring exceeded six figures. It turns out that Crohn’s disease is not only a literal pain in the ass, it’s expensive, too. Fortunately, I was covered by a good health plan through my job, and we had saved up an emergency fund, which would cover out-of-pocket expenses. That “Maximum Out-of-Pocket” figure on my plan description held a whole new meaning for me. It’s now something I pay close attention to when selecting a medical plan.

Rejoining the World

Along with learning how to eat again came some anxiety about social gatherings and going back to work. Spending so much time in the hospital and recovering left me feeling sidelined from life, and as I recovered I grappled with a lot of things. I was only 29 and had never known anyone my age who was chronically ill, and now felt "different" - my experience was isolating.

Would people understand? Would they act differently toward me? How should I act? How do I answer questions? Will anyone understand that just because I’m out of the hospital, that doesn’t mean that I’m “better’? How much about my condition and experience should I share, and how much will people be willing to hear? How do I thank them for their support?
 
For the most part, people were very kind. Some friends offered to listen if I needed to talk, which I appreciated. At the time, I found that I wasn't really ready to talk yet, and wasn't sure what I would even say. I found that my condition is little understood, and that people moved on faster than I did. This meant that sometimes if I wasn't feeling well or was finally ready to talk, people didn't always understand or weren't ready to listen. Sometimes I just felt like if I talked about my experience, I was simply annoying people (I still feel like that, at times).

In some ways, the days down the road were more difficult. Even after I was out of the hospital and recovered from surgery, I was still trying to figure out if my medications were working, how to establish relationships with my doctors, and how to maintain my new-found "health" and energy. But social outings were different than they used to be, because my diet was altered and my energy levels were sapped easily. Saying 'no' to some events and gatherings became something I had to do more often, and that was not always understood.

Not all of my friendships – ones I had then, and some since then – have survived the test of time. I can’t blame all of these losses on Crohn’s, because many relationships evolve over time, as life becomes busy with families, jobs, and moves. But no matter what, I have had to accept that my disease is a factor that impacts my relationships, and that hurts.

Moving on

Life went on with it's peaks and valleys, as it tends to do whether you’re ready for it or not. Not only did the pain from my surgery go away, but once I healed, I realized that the constant pain in my gut was gone! I felt better than I had in months, and life was so much better. I had to add a medication to my regimen that fall, but it helped quiet the symptoms that had reappeared. I found a routine, and came to peace with my new life. Over the last half of 2005, I started the first of my last two semesters of grad school, and celebrated my 30th birthday and a new job.

On Sunday, May 14, 2006 – one day shy of the first anniversary of my resection – I participated in my graduate school commencement ceremony. I had earned my MBA, and had done it within the time frame I set out to do it in. My family was there to cheer me on, and as it turns out, I (literally) didn’t walk across that stage alone. Two days after the ceremony, we would learn that I was pregnant.

Friday, May 10, 2013

What I'm Getting For Mother's Day

For my first Mother’s Day in 2007, we went to brunch, something that has since become a tradition, and one that I look forward to every year. I think Chris still tries to “surprise” me with brunch plans, but he needn’t worry; I know what’s up his sleeve, and I won’t be disappointed.

The boys have come to love our brunch tradition, too. If we are not out of town, we usually attend the brunch buffet at a local golf course, and both kids will quickly note that it’s got a chocolate fountain. In fact, that fountain was the first thing W inquired about when he found out we had brunch plans this Sunday: “Is it the one with the chocolate fountain?”

S-Man after his chocolate fountain dessert in 2011

Yes, I’m looking forward to our reservation, and no, I won’t be dressing anyone in white this year.

Over the course of our marriage, Chris and I have agreed that we don’t want much from each other in terms of gifts. But one of my most memorable and favorite Mother’s Day gifts is a mother’s necklace. I received it in 2007 when W was a baby, and it had 2 stones – one each symbolizing our new baby and me. In 2010, the spring after S-Man was born, I noticed that my necklace had disappeared from our closet, but kept my suspicions to myself – and was beyond pleased when I got it back for Mother’s Day, this time with two more stones added – these for our new son, and my husband.


I cherish my necklace, but mostly, though, I just want brunch. And my scrapbook.

At the end of 2011, I asked my husband for an empty scrapbook from the kids for Christmas; one with blank pages for them to fill, not me. They each can fill in a page for  holidays they deem worthy, either major or minor (Christmas, Valentine’s Day, Mother’s Day, my birthday) and hopefully they won’t feel the need to purchase anything as a gift, because I don’t want one (other than any other projects they plan and make themselves).

It’s perfect. It captures a bit of who they are in the moment they drew their pages. Even as I’ve looked back through the pages with W, he’ll note that he spelled words wrong in the past, or even that some of his drawings, “aren’t very good.” I assure him that they are perfect, and it shows just how much he’s learned and grown in such a short time. And that’s exactly what I want to capture with my scrapbook.

I love the concept so much, I bought a “Daddy scrapbook” for Chris, as well.

I can’t take credit for the idea. I read about it in a story published in the May 2011 issue of Real Simple magazine. I’m not sure if this is an idea I would have ordinarily picked up with so much passion, or if it was simply the timing. Only a few months before I read this article, my Crohn’s disease had placed me in the hospital so swiftly and forcefully that I had no choice but to acknowledge my mortality (a story I have yet to share here). Because of this, I craved my children, the moments with them, and simplicity more. This project fit the bill nicely, and still does.



This weekend, my parents are visiting, and so I’m fortunate that I’ll also get to celebrate my own mother, as well. She’s not only the woman who raised me, but is also the one who has dropped everything to help out when I’ve been in the hospital, the one who’s hug I still sometimes need, and the person who can still tell, over the phone, if I’m getting enough rest or not. Thanks, Mom.

So many things in life are dependent upon how you’ve set your expectations, and Mother’s Day (heck, motherhood) is one of them. I don’t expect to have a “spa” day, nor do I want one. Last night, W mentioned his concern about going to a friend’s birthday party on Sunday afternoon, because, as he said, “I want to make sure I spend time with you for Mother’s Day.” He’s right. I’m a mom because of him and his brother, and this day isn’t just about me.

Yes, I would love to be pampered and have a day “off.” But I also don’t want to be a Momzilla who puts so much emphasis on what I want for the day that I make my children feel like spending time with them would be inconvenient or make me unhappy. So, for Mother’s Day, I’ll have brunch with my family; I’ll ooh and ahh over my scrapbook; and I’ll take the day off from laundry and hopefully have a nap. But if I truly want to be pampered, I can make it a priority to schedule that – a massage, girl-time, or something along those lines – any other day of the year. This Sunday, I know what I’ll be getting – and that’s all I need.

Tuesday, May 7, 2013

Tomato, To-MAH-to!

Knowledge is knowing a tomato is a fruit; Wisdom is not putting it in a fruit salad.
~Unknown

Soon, it will be time to plant our garden. It's a small plot, but has served us well over the past few years. We've harvested different things - peas, cucumbers, beans, carrots, peppers...and always tomatoes. We usually put in two plants: one for grape tomatoes, one for regular tomatoes. My mouth waters just thinking about them. The grape tomatoes are perfect for plucking off the vine and popping them right into your mouth, and I love that our children are learning the pleasure of this, too.
Our second annual garden, circa 2010.

Store-bought tomatoes just don't compare. They've got no color or flavor, and the texture just isn't what it should be. Eating tomatoes with a mealy texture is so disappointing. Once we run out of our own crop, and we must return to store-bought tomatoes, I am reminded of just how good a home-grown tomato can be.

Our freshly planted garden in 2011, with a new fence
(when S-Man was going through an anti-pants-diaper-only phase).

According to an article in this month's Scientific American, scientists are trying to put the flavor back into supermarket tomatoes. You see, since the 70's, tomatoes have been modified to grow more yield per plant, and to have more water content so they ship better and last longer on the shelf. All this for the customer - who incidentally is the grower, not the consumer. Viola! Mealy tomatoes.

I get it - it's economics. Supply and demand. But many of us are trying to feed our families healthy food. To realize that some of what's available in the store doesn't taste as good because it's been made to be "shippable" and that the result is actually a fruit with less nutrition in it is disconcerting. Also, as someone who is not only trying to do the best thing for her family, but who has a digestive disease that was triggered by some unknown environmental factor - all of this crop modification frustrates me.

So, we grow our own tomatoes. Not only are they are delicious, but growing a garden is a good lesson for our boys, and good for the environment.

You can have an impact, too. Grow your own, purchase from Farmer's Market, and buy local!

Thursday, May 2, 2013

Throwback Thursday

This is a photo of Chris and me, taken in 1999, the first summer we were dating. It's amazing to look back and realize how simple life was back then (and how well rested we were!). It's equally amazing to realize how far we've come since then; how much we've weathered and grown and how we have evolved, both as individuals and as a couple. There was so much waiting for us on the horizon, including a marriage and two children.

Yes, that's a mad-bomber hat that I'm wearing. Why? I don't know. We'd meet up at someone's apartment, and head out bowling with a group of friends. Sometimes we would find the oddest things to wear....just because. And we had a blast.

Tuesday, April 30, 2013

A Routine Procedure

The Minnesota Department of Health has run a fairly humorous colon cancer awareness campaign promoting colonoscopies this spring. This billboard replaced one seen last month:
 
Embarrassment can't kill you!
Being that I've had more experiences with colonoscopies in life by now than I thought I'd ever need, I've had much appreciation for these billboards, even if my screens aren't exclusively for the purpose of looking for colon cancer.

I had my latest routine colonoscopy yesterday (insert cheers and applause here). Like I've said before, the prep is really the worst part. For some reason, the prep this time (the same concoction I've used before) was awful. I'll spare you the details, but I was up until 2 am.

The billboard is right in that embarrassment won't kill you. And really, colonoscopies shouldn't be embarrassing, especially if you focus on the science of it - it's the human body and "everyone poops." But I'll be honest. As you sit in the procedure room, discussing and signing off on the risks of the procedure, reviewing your pharmaceutical regimen and your overall condition with your gastroenterologist, there's a part of you that can't stop thinking, "this person is going to stick a camera up my ass."

Fortunately, the procedure went well. I was happy that no ulcers were found and that my anastomosis (the part where my intestines were resected) had not narrowed significantly since a balloon dilation 2.5 years ago. The anastomosis was, however, red and inflamed, but biopsy results will indicate if it is due to active Crohn's or simply irritation. Once we get the test results, we can go from there. At least I have confirmation of what the pain I have in that area is. I have a photo here - but it's not pretty, so be warned.

Meanwhile, my stomach is still angry about what it's been through, so I'll keep my diet pretty simple for a few days (liquids, oatmeal, bananas). Today's lunch was 3 tablespoons of creamy peanut butter and some greek yogurt, and even that hurt. I was foolish enough (after that pain dissipated) to try some hot dog for dinner. Yeah, that only served to irritate other issues.


Oh, well.

As a total aside, do you suppose the model for that ad was excited? Calling home to exclaim, "I'm on a billboard! You can't see my face but my right butt-cheek looks fantastic! I'll send pictures!"?

Wednesday, April 24, 2013

Stuck in a Moment

I've been trying to do a lot of writing lately, which has been a challenge due to demands at work and at home (you know, "life"). My presence here really started last fall, when I was encouraged to write as an outlet, and I started to document my experience of living with Crohn's disease, starting with my diagnosis. Since then, I've written a lot of material that is in various phases of being finished and edited. Some of it I will post in due time, and some of it I will keep for myself.

The advice to write was some of the best I have received, even if I had concerns about finding the time to do it. I know there benefits of journaling and writing, and I had hopes that it would be a therapeutic outlet for me. Not only has it been that, but I did not realize how far the benefits would stretch for me, nor that a spark would be ignited within me. I've discovered that I love to write (not just about Crohn's), and can feel the words burning inside of me (no, it's not just indigestion). My writing quality is another question - after years of being trained to write in bullet points, with brevity and without emotion, expressing myself here is a new challenge.

There were other things I did not expect. I did not expect this to be an emotional process to the extent that is has been. I didn't realize how much of my past experiences and emotions had been buried and that dredging them up could be mentally and emotionally taxing. I did not anticipate that the process of writing some of these experiences would leave me feeling raw and that my mind would stay awake at night, whirling with words. And most of all, I did not expect that the feedback that I would receive from the few people in my life that I have shared this blog with could move me to tears.

Even though the writing is therapeutic and through it I have found a "release", I've struggled with the words in the past few weeks. I have been trying to understand why, and when the song, "Stuck in a Moment" popped into my head the other night, I realized that I am just "stuck." I'm stuck trying to summarize the emotions of the time, and trying to capture and portray it the way I want to. But if I keep at it, I'll find the words. (Incidentally, I am a big fan of U2, going all the way back to when we could listen to them on cassette tape).


Meanwhile, I've got to remind myself:

"It's just a moment
This time will pass."

Tuesday, April 16, 2013

Be the Helpers

Yesterday we were reminded that there are horrors in the world, and that they can happen at any time. There are dangerous people lurking among us, and we will never always know when evil will strike. The news is fraught with bad news on a daily basis.

These words from Mr. Rogers bring me some comfort at these times, especially as a parent. They remind me that even in the midst of scary happenings, we should look for the helpers. The helpers are a comfort and a source of good in the face of chaos. I think that's an important lesson to teach our children. Even more important, we need to teach them to be the helpers.

In the face of depressing news, it can be hard to stay positive. Today, look for the good in people and in the world. I'm going to try and go a step further - I'm going to try and BE positive and share love, especially with my family.

Wishing my best to you, and especially the people of Boston and the victims of yesterday's bombing.

Wednesday, April 10, 2013

Honesty in the Face of Punishment

Our oldest son, W, excused himself from the table during last night's dinner to use the bathroom. A few minutes later, we heard a loud crash, followed by the sound of something pinging on the floor, and then, finally, silence.

"Are you okay?" I asked, approaching the door.

"Yes," came the reply.

"What happened?"

No answer.

"What happened?" I pressed.

The door opened. "I don't want to tell you, because then I will be in trouble," W responded, with tears starting to well in his eyes.

I entered the bathroom and found this:


This spot on the wall marks where I had affixed a hook next to the powder room sink to hold hand towels for the boys. The towel bar is too high for them to be able to replace the towels after drying their hands, and this solution had worked well, thus far.

What did we learn last night? That while those handy 3M Command removable hooks work very well for many things, they do not hold 57-pound 6 year-olds who try to hang from it using a hand towel.

I was also reminded that trying to punish your son for doing something impulsive and foolish while also encouraging him to tell the truth in the face of punishment is a delicate balance. He's only 6 now, but I predict that it will only get harder as time goes on.

Looking into the future, I see an adolescent, a teen, a young man - learning to be out on his own. How do we reinforce that he can trust us enough to come to us when he needs to, even when he's done something wrong? How do we let him know that if he's in a bind, he can come to us? How do we hold him accountable for his actions but let him know that he did the right thing?

There will be plenty of things that our children will do in life that we won't ever find out about, and I (begrudgingly) accept that. When our children admit to us that they've done something wrong, the punishment is reduced for their honesty, and we tell them how much we appreciate them coming to us. This arrangement has worked well...so far. The formula may need to be tweaked as time goes on.

We could have handled last night's incident better than we did, I think. W was tired, and I think both Chris and I probably overreacted. I give us a B-. Hopefully next time, we'll do better.

Tuesday, April 9, 2013

Motherhood Attention Deficit Disorder


I saw this on my Facebook feed last night and found it hilariously appropriate.
 
Evenings, for many families, are beyond busy. Yesterday evening was no different - we were scrambling to eat before heading out to the boys' swim lessons. My my mind was buzzing, and I was trying to capture several thoughts on a paper before I lost them: a few final thoughts regarding a project at work; RSVP to birthday party; make dentist appointment; refill prescription; pick up the dry cleaning; etc., etc., etc.
 
Meanwhile, my husband was telling me about work, our oldest started to pipe in with a story about school, and our youngest called for me to wipe his bottom (because it HAS to be Mommy that does it!).
 
I've been working very hard to be more present in the current moment and focus on other things later. But the reality is that sometimes you just have to juggle multiple things. And keep lots of lists.

 




Friday, April 5, 2013

Why We No Longer Use Anti-bacterial Products

In the summer of 2007, we were enjoying our first summer with our oldest son, W, who at the time was 5 months old. Like many parents (especially new ones), we cautiously researched products we used for and around our baby boy, wanting to make the best and healthiest decisions for him.

Because of concerns about my immune system, I was already cautious about the cleaning products we used, and opted for non-toxic brands - often using natural cleaners such as vinegar. We also used regular hand-washing as a tactic to help prevent the spread of germs and keep our little guy healthy. I didn't put much thought into the hand soap we used, and usually just purchased what smelled good. That year, however, I started paying more attention.

#1: Anti-bacterial soaps can foster the growth of resistant bacteria

In their June 2007 issue, Scientific American published an article reporting that regular hand soap not only works as well as anti-bacterial hand soap, but that the anti-bacterial variety could be doing us more harm than good. Basically, regular soap does its job by lifting germs from the surface of your hands so that they can be washed away. But anti-bacterial soap leaves behind a residue that could actually promote the growth of resistant bacteria. It was at this time that I stopped buying anti-bacterial soaps, and from then on have purchased regular soap. It was also at this time that I stopped buying soap from Bath and Body Works, when I couldn't find a one there that wasn't anti-bacterial.

The active ingredient in many anti-bacterial products is triclosan. At the current time, the FDA has taken the stance that triclosan poses no risk to humans. However, it does concede that animal studies have shown that it can impact hormone regulation and the agency is currently exploring human and environmental impacts further. Additionally, the FDA has not found any benefit to using anti-bacterial soap instead of plain old soap and water.



#2: Anti-bacterial products can harm the environment

In January 2013, the University of Minnesota published a study that found large amounts of triclosan in bodies of water that receive treated waste water. Even after treatment, triclosan can harbor the growth of dioxins, which are a chemical contaminant potentially toxic to the environment, and which can cause health issues in humans.

Based on this study, the state of Minnesota decided to phase out the use of anti-bacterial products in state agencies by June of this year.

The bottom line...
There are no known benefits for using anti-bacterial soap for most of the population. However, the costs include harming our environment and potentially sickening ourselves. In fact, in doing my research, I found a presentation published by Tufts University with concerns about anti-bacterial household products, even linking them to allergies. It was dated June 2001. Why are we still using these products?

While we're on the topic of soap...

I like method soap (among other products), available at Target. For the soap pumps used by our children, I prefer the foaming pump over the regular liquid soap. We tend to get more uses per ounce from those, and the bathrooms don't end up with liquid soap "goop" all over the dispenser, counter, and sink. In the kitchen, I like Caldrea or Thymes.

What you can do
  • Stop using anti-bacterial soap at home. The Minnesota Department of Health does a nice job of summarizing how you can select which type of soap to use.
  • Sign petitions such as this one calling for the elimination of triclosan from cleaning products.
  • Spread the word!

Thursday, April 4, 2013

The Guest House

This week I had an unwelcome visit from the Crohn's monster, and so have tried to take it easy the past few days. Fortunately, I was able to go wild tonight and eat...CHICKEN! And then I did cartwheels! Really, though - I count myself fortunate that so far dinner is sitting well (after 1 day of a liquid diet and 2 days of a soft diet).

I attended a meditation session over lunch today, and the woman that led it shared the following poem. It was timely for me this week, but I think that it's one many of us can relate to. Enjoy!

 
The Guest House
 
This being human is a guest house.
Every morning a new arrival.
 
A joy, a depression, a meanness,
some momentary awareness comes
as an unexpected visitor.
 
Welcome and entertain them all!
Even if they're a crowd of sorrows,
who violently sweep your house
empty of its furniture,
still, treat each guest honorably.
He may be clearing you out
for some new delight.
 
The dark thought, the shame, the malice,
meet them at the door laughing,
and invite them in.
 
Be grateful for whoever comes,
because each has been sent
as a guide from beyond.
 
--Rumi


Sunday, March 31, 2013

Happy Easter!

I hope you and your family had a wonderful weekend! (For the record, our boys decided it was best to eat their chocolate bunnies by starting with the ears.)
 

Monday, March 25, 2013

My Diagnosis Story, Part III: Surgery

This is my third installment of the 4-part story of my diagnosis of Crohn’s disease in the spring of 2005. You can find the preceding parts here and here.

I got a crash course in Crohn’s disease only a week after receiving the results from my second abdominal CT scan. The ramp up of my symptoms was fast and furious, and I was sprung into a whirlwind of illness worse than any of my previous encounters with the Crohn’s monster.

My pain wasn’t abating like it had with past flare-ups – this time, it settled in and stayed. The pain and cramping became so unbearable over the course of one afternoon that I made an appointment with my regular doctor to see him immediately after work (I hadn’t yet seen my gastroenterologist for a consult). I was put on a liquid diet and given prescriptions for pain meds and antibiotics, which my husband, Chris, got filled for me – once I got home, I couldn’t even get out of the house.

The next morning, a Friday, I knew I would not make it to work. I optimistically attempted to get some work done remotely at home, but ended up back in bed. I tried to go to work the next Monday, but that proved to be a mistake.

By Wednesday, I had been home sick more days than I had been in the office in the past week, and things were only getting worse. I was unable to eat and even if I could, I wasn’t keeping anything down. The pain meds weren’t helping, either. I tried to shower, hoping it would ease my sore and distended abdomen, but fell to my hands and knees in the tub, retching from the nausea and crying from the pain. The shower didn’t work; the warm water brought little relief and certainly wasn’t enough to wash the pain away.

After my attempt at a shower, Chris took me to the ER.

Hospitalization #2

I still didn’t have much knowledge about Crohn’s disease or what to expect as I was admitted to the hospital for the second time in less than 40 days. IV’s brought welcome relief to my pain and dehydration, and after an abdominal x-ray (more radiation!), I was taken to a temporary room while I waited for a patient room to open upstairs.

On day 3, a PICC line was placed to provide nutrition - Total Parenteral Nutrition (TPN) - as I was malnourished and still only taking liquids by mouth due to the bowel obstruction I arrived with. Over the course of my stay, I would also receive vitamins and fat intravenously through my central line.

After the PICC line was placed, I was finally moved to room 407, bed 2 (I still remember the room number and view), a more “permanent” room. My first week in the hospital was dull, in which I slept a lot, took walks (with my IV pole, dubbed “Hal” by my Dad, in tow), and just tried to get better. Blood tests were done regularly, IV bags rotated, and a lot of TV was watched.

A colonoscopy (my first ever) was scheduled for day 8. The prep was awful, especially given that I was attached to Hal. But lucky me - I’d only been taking fluids, and the nurse brought in a commode so I could take care of business right there next to my bed! The procedure revealed a stricture so significant that my new friend, the gastroenterologist, could not get the scope into my small intestine. That hurt, literally. Even though I had received anesthetic, I groaned in pain as the doctor tried to navigate through my insides and she stopped to ask, “You can feel that?”

The biopsy of tissue samples taken during the scope also confirmed Crohn’s disease.
Surgery…

A surgeon was called in to consult on my case. Based on my CT and colonoscopy results, surgery was recommended.  I was warned that because of the amount of scar tissue built up in my intestine, future flares would likely land me back in the hospital; alternatively, for patients who have surgery, there is a very good chance that it will eventually be needed again. The decision was mine.

I was tired of the pain. I was tired of being curled up on the floor in middle of the night waiting for the cramps to disappear. Now that I knew what I was dealing with, I wanted a fresh start, and a better chance of finding my way to remission. I consented, and on Day 12, I underwent resection surgery, during which a foot of my small intestine was removed.

… and more waiting

Recovery wasn’t easy, but I was determined to get out of the hospital as quickly as possible. I would be discharged after I was walking on my own, my bowels “woke up,” and I was taking food again. Three days after surgery, I was given the go-ahead to try some crackers. I hadn’t had “food” in more than 2 weeks, and quite frankly – I was afraid of it. It took several minutes for me to finish that first cracker.

Still, the waiting was trying. I recall a volunteer who stopped by after I’d been hospitalized for a few weeks. I had woken up with a pretty strong resolve that day – focused on walking the halls and regaining my strength. He wanted to know how I was doing; how was I coping with being in the hospital for so long? “Two weeks is a long time,” he said gently. My heart sank. Somehow this sweet, kindly gentleman, with his well-meaning comment, made me see myself from the outside. And it took the wind out of my sails.

I’ll also never forget my first post-op shower free from Hal. The nurses wrapped plastic around my IV ports and taped them up to protect them from water. The shower room was down the hall, so I collected my things and off I went. It was the BEST. SHOWER. EVER. I felt human again! That is, until it was time to return to my room. I still wasn’t taking much food, and my body wasn’t used to being off TPN. The result? I fainted in the hallway. Superstar!

I wish I could admit that fainting was just a ploy for attention due to boredom, but it wasn’t. Someone caught me and got me to my bed, where two nurses checked my vitals and hooked me back up to those damn IVs.

On day 18 - Saturday, May 21 - I finally went home.

Gratitude

Being in the hospital for nearly three weeks in the spring can feel lonely. But I’m fortunate that most of the time I didn’t feel that way. I had my amazing husband, who came to the hospital every day I was there. He also brought up a portable DVD player and movies and would climb into bed alongside me so we could watch them together. This wonderful man also brought me things from home – photos, mail, and printed e-mails of support from friends and family. He was even able to bring up our dog, Willow, a few times.

I also had my parents, who made the one-way 4 hour drive every chance they got; who were there the day of my surgery; who, along with my husband and me, listened intently to test results, prognoses, and shed tears with and for me.

The roster of people who have touched and supported me - both at the time and since then - is long. Family, friends, and coworkers who visited, called, e-mailed, sent flowers, care packages, and cards. My sister-in-law, who drove several hours one way with my nephew to visit. The friend who loaned me a laptop. The friend who made meals for my husband, so he didn’t have to subsist alone on fast food or food from the hospital cafeteria. My aunts, who called and offered words of support - one of whom cried for me, as she asked, “Why?” I still don’t have an answer.

Eight years later, I still have all of those cards, and even now, they move me. Every single one of them is appreciated and cherished. Like my disease, that love and support has been woven into the fabric of who I am today.

Next: My Diagnosis Story, Part IV: Recovery...and Acception

Thursday, March 21, 2013

Living Healthy

I've had a streak of about a month now where I've been feeling pretty good, especially if I'm taking good care of myself. I know; it's so common sense, but it really, is not always easy. There are so many external factors - work stress, children who wake you in the night - that you really can't control it all. Energy can still be an issue - I wish I could find some way to tap my children's energy - I could keep up with them so much better that way!

This quote helped put into words what I need to remind myself of when I'm on a good streak - to live healthy. Not to live healthy lifestyle, mind you, but to put my guard down a little bit and let myself live life a little less like a "sick" person. It's amazing how guarded and cautious you can become when you have a chronic illness - even when you feel good. Knowing that one day you may wake up feeling rotten, have it happen over the course of a single day or hour, or even end up in the ER with little to no warning means you treat your days and plans a bit differently.

 
 
Be well!