Saturday, March 18, 2017

Marissa-ism

Our family has been watching "Parks and Recreation" on Netflix. By far our family's favorite character is Ron Swanson, the government employee who does not believe in government. He hates people, he hates parties, and he absolutely hates healthy food.

The characters on Parks & Rec swear, but instead of swearing, they bleep out the words and blur out the person's mouth so you can't tell what they're saying. Even in the original airing you never heard them curse, it's just a technique that's humorous, for some reason.

Marissa was watching an episode yesterday where Ron has to organize an employee appreciation picnic, something Leslie Knope, Amy Poehler's character, usually does. He is telling others what he's going to have at the picnic and says, "And there will be no bleeping vegetables."

Marissa didn't hear what he said, so she turns to me and says, "There will be no fucking what?"

The look of surprise on her face was hilarious. We all had a good laugh.



Friday, March 10, 2017

Struggling in Secret

Overwhelmed. That is the only word for all the emotions I'm feeling.

Overwhelmed by the issues facing Lindsey. Overwhelmed with the amount of information I'm learning about GI conditions, about natural treatments and cures, and the impact diet may have on a person's digestive system. Overwhelmed by thinking of the possible causes of Lindsey's issues, be it a physical ailment or an emotional one that affects her physical body.

More wonderfully, overwhelmed by the support and advice of my tribe.

Here's what I've learned through sharing our family's story: lots of people have been through this. Many parents told me stories of their teenage children struggling with digestive symptoms for which no "standard answer" was found. Each of them went down different paths of doctoring, diet, supplements and therapy. Most of them eventually got to an answer, but for some, the answers took years. Years. That might be fine for adults, but for teenagers, that's their entire adolescent experience.

My question is this: Why are we all struggling in secret? Let's share our stories, pool our knowledge, and find the quickest and surest path to health. Yes, the causes are different, the ultimate answers are different, but the symptoms are the same. How are families getting their children to school when they are struck by random bouts of diarrhea? What diet changes did they find worked? What didn't work?

Keep in touch, keep talking, share knowledge to help those coming down this path after you. I can guarantee I will do the same for you.



Tuesday, March 07, 2017

Leave of Absence

One thing that always brings a smile to Lindsey's face: Beauty.
Nothing has yet solved Lindsey's GI issues. Not the detailed food diary she's been keeping that we are pouring over, looking for potential food triggers. Not eating small, bland meals every two hours. Not the GI specialist, with whom we had probably the absolutely worst visit with a physician that I've ever experienced. Not a daily dose of Zantac, herbal teas, probiotics and other medicines.

Of the four full weeks in February, Lindsey missed school for three of them. She missed two straight weeks, went back to school for a week, then the stomach issues came back again full force.

I felt guilty leaving Lindsey home alone for hours at a time while everyone was at work or school. And I know she wasn't taking the best care of herself. We would come home to see the doses of medication still sitting on the countertop, herbal tea packets unopened, and for lunch she had a bag of gluten-free chips. Yes, she's a usually a mature, responsible girl, but when it comes to caring for her health, she is still 13.

The stress for our family became apparent when what was supposed to be a "quick" run for a blood draw over my lunch hour turned into a 4-hour ordeal. We ended up waiting in the emergency room for a blood draw, because that was the only place in the hospital that would use a "j-tip" for the procedure, which makes it completely painless.

Guess what waiting for a procedure you're already nervous about does? Yep, it increases your anxiety.

Lindsey nearly passed out during the procedure. It's a good thing she was already prone, or we would have been picking her up off the floor. She actually doesn't remember much of it because she was so out of it.

Instead of going back to work, I ended up stopping in the office to pick up my laptop so I could work remotely for the latter part of the afternoon. I missed a strategy meeting that I was looking forward to participating in. Lindsey apologized to me for taking so long for what should be a simple blood draw.

My child, apologizing to me, for having anxiety around a condition that is causing her pain. This was too much.

That evening Wayne and I decided that I would take a leave of absence from work to manage Lindsey through this, whatever "this" is. I was trying to work a full-time job while working another full-time job as Lindsey's healthcare and education manager. It wasn't fair to my employer, to Lindsey, and especially to me.

Unfortunately the timing is bad at work, with a couple of people having recently left the organization. I was willing to work some hours at home to keep projects moving along, so we arranged it so that I am working part-time on a temporary basis, able to come back to more hours when things get better at home. I am so grateful to work at a place that is so understanding and accommodating.

And so this week our new reality begins. We are all hoping that we can get to a diagnosis and a solution for her soon. I do not wish for this to become our "new normal," I'd rather go back to our old normal, thank you very much.

Tuesday, February 07, 2017

What Now?


How ironic that I just posted about solving Lindsey's tummy troubles and trying a dairy-free diet. I wrote in such hope that perhaps dairy-free would be the answer, while also wishing that it wouldn't be because this Wisconsin girl finds dairy-free cooking/eating to be exceedingly difficult.

What's more difficult is taking the day off work to spend 5 hours in the ER with your daughter who cannot eat a thing without pain.

She missed school on Monday due to diarrhea and a stomach ache. She didn't eat all day, ate dinner with us that evening, and spent the evening curled up in a ball in agony.

I was hoping that a good night's sleep would help (now I ask myself, "help what?"). She awoke late Tuesday morning groggy, having not slept well due to a stomach ache all night. I couldn't coax her to eat until 11:30 or so. She had a brunch of a fried egg, gluten-free toast with jam, and a small side of potatoes. Granted, not the most balanced meal, but not the worst thing I've seen 13-year-olds shovel in their mouths.

She went up to her room and 20 minutes later I checked on her. She had beads of sweat on her forehead and was rolling in her bed in pain. She probably would have thrown up had it not been for her fierce aversion to vomiting.

We were in the ER by 12:30 and discharged around 4:30, not bad for a major metro emergency room. After an X-ray and a blood draw, they determined that she has no blockage, no inflammation, no other exceedingly obvious problems that would cause these issues. We already had an appointment with a pediatric gastrointestinal specialist (which is pronounced "expensive"), but not until late March.

The good news? All the scans the GI specialist would want are already complete, and Lindsey's anxiety around a blood draw doesn't have to be dealt with in the near future.

The bad news? She went home from the ER still uncertain as to whether or not she could eat without pain. Sure enough, about 30 mins after her gluten-free, dairy-free dinner, she had a stomach ache and diarrhea. But she managed to keep it down and isn't losing weight.

I suspect we have more tests and screens in our near future. And, I'm hoping, answers and relief.


Saturday, February 04, 2017

Tummy Troubles



Lindsey has been dealing with on and off stomach aches for several years. When she was younger, we chalked them up to what most parents think -- nervousness or a desire to miss a school day.

In the past couple of years they've become more troublesome and frequent. Lindsey noticed that she was often feeling bloated after eating pasta or breads. One evening I watched her gobble a plate of spaghetti and not even 10 minutes later she was groaning with a stomachache.

I recommended that she try cutting gluten. The stomachaches had finally gotten bad enough that she was willing to cut out her favorite food; pasta.

We found a decent gluten-free pasta, and I started substituting GF flour for regular flour in my cooking. It took a few tries but we found a decent GF bread. Her stomachaches got better, fewer in frequency and not as severe.

She's been gluten-free for 18 months, and for most of it her stomach troubles have been better. That is, until recently.

In the past six months or so she's been having issues again. One day she stayed home due to a bout of diarrhea in the morning. She felt better by noon so she went to school, only to have an accident at recess. I felt so badly for her.

Once again, we wondered if the stomachaches were due to stress or anxiety, but the very real physical symptoms were not at the same time as her stress. She would be working on a big school project, complete it and turn it in, and the following week be out with terrible tummy troubles.

I took her to an integrative medicine physician, who recommended that she take probiotics and switch to whole milk from 2% milk. (Really?) I took her back to the pediatrician recently who weighed her and measured her, and determined that she is gaining weight and growing, which is all good. By the time of this appointment Lindsey reported to her that she was getting a stomachache every afternoon after lunch. Every single day. I would think that knowing that you're going to be in pain after eating would keep you from eating at all.

The pediatrician recommended that we try cutting out dairy as well, knowing that Lindsey had a milk allergy as a baby. On our way home from the doctor's office we bought almond milk, vegan butter and a new probiotic to try.

It's been one week, and Lindsey's had one episode, but for the most part has been feeling well. In the meantime, I am struggling to create gluten-free, dairy free meals the entire family will eat. I made mashed potatoes the other evening with almond milk, and while everyone ate them, they tasted gritty to me. A favorite recipe of ours of chicken with a white wine and sour cream sauce turned out too tangy because there was no dairy to cut the acidity of the wine.

I am hoping that this will be the beginning of the end of her GI troubles. In the meantime, we're all eating healthier, less processed foods.

Tuesday, January 31, 2017

Ice Booms


My sister and I took a walk on Lake Harriet at dusk recently. And yes, I mean ON Lake Harriet. Despite the recent warming spell, the ice was still over a foot thick and safe to walk on.

We walked toward the Minneapolis skyline and bandshell. Icefishers were on the ice and in shanties, their boots crunching on the snow, voices echoing over the expanse of ice.

Sunset.

Downtown Minneapolis catching the sunset.



We stood in the middle of the lake and listened to the silence. It was peaceful and beautiful, and broken by a strange sound. It was a pinging sound that started on one side of the lake and made its way around the shore, a high-pitched twinge. We heard it again in a few minutes, and then again. Finally we realized that it was the ice shifting, as it was dusk and the ice was re-freezing after a sunny day.

It was eerie and amazing at the same time. We both thought of my dad, and of how he loved Lake Superior with its alternating strength and stillness. Kristi recounted going to the shore of Lake Superior with my dad after my grandfather passed away 20 years previous, to see and hear the ice shivering between solid ice and open water.

We began to walk off the ice, and stopped for one last look around, hoping for one last ice boom. The final one came from under our feet. It sounded like a glass breaking in slow motion, following by the pinging sound that reverberated around the lake.

It was wonderful to take in the sights and sounds of the lake in the heart of the city.

Thursday, January 26, 2017

Standing Up For Each Other

I believe that it is important that we teach our children how to participate in this American experiment called democracy. I'm not going to get into politics except to say that no matter your position, for democracy to work, we have to participate.

So when I heard that a women's march was being organized for the day after Trump's inauguration, I suspected that it would be big. The march wasn't about reproductive rights, or racism, or gender equality, it was about all of those things -- that women's rights are human rights.

Only Lindsey was interested in coming with me. Marissa was worried that people were going to get  hurt; she didn't want to come near it.

After hearing Marissa's concern, and seeing pictures of this sign at the march in California, Marissa's hesitation gave me pause.

"I'm gonna see you nice white ladies at the next #Black Lives Matter march, right?"
This sign was created by Amir Talai, a Persian American actor in California. He has been involved in the Black Lives Matter movement for the past few years; he talks about why he wrote this in this interview by Fusion.

Living in Minneapolis, I've had lots of opportunities to get involved in various demonstrations and protests. Yet I never stepped forward before, nor would I have had my children attend, either.

I had to ask myself, "Why?" The struggles for equal rights is real for people of color -- why haven't I joined them before? It's not that I don't care or haven't considered participating; I have friends who are very involved and they frequently have invited me to join them at various rallies and gatherings.

The answer was easy: I did not feel safe at those gatherings. And not for the reasons you may think.

Let me tell you the story of another march.

This past November, Black Lives Matter organized a march involving Minneapolis Public Schools. Students were invited to take part by leaving their classrooms near the end of the day and gathering in downtown Minneapolis in a route approved in advance by the city. The children of friends and acquaintances took part in this, leaving Southwest High School and walking down the street with signs and banners, then made their way to downtown Minneapolis to join the students from other MPS schools.

Once near the US Bank stadium, on the previously approved march route, police pepper-sprayed the crowd. These are high schoolers, kids from 14 to 18 years of age. My friend's 14-year-old daughter was traumatized by the experience, her eyes swollen shut, her emotions raw from the chaos and fear of the incident.

The media did not cover the peaceful gathering, the police "protection" which turned into violence against the students. It was just another protest by another disgruntled niche of our diverse society.

Need you ask, it was mostly students of color who participated in this march. Their Caucasian counterparts did not join them. If they had, I suspect the police response would have been very different.

In thinking about these two organized demonstrations, I felt safe taking part in a march of what turned out to be nearly 100,000 people, and did not feel safe in a group of 100 people.

This realization told me so much about myself and about our society. I cannot begin to understand to the frustration that people of color feel at being squelched when they protest their treatment. But I can try to relate. And I can stand up for them any way I can, with my voice, my calls to lawmakers and my vote.

Lindsey's Spoken Word Poetry

This girl is something else.
As part of Lindsey's 8th grade Language Arts class (the new term for what we used to call "English"), every student was assigned to write a spoken word poem.

The PTA funded a position with a local poet who worked with the students on this art form. They had to learn to use similes, metaphors, rhyming and rhythm techniques for writing an effective poem. Topic? Any of their choosing.

Some weeks ago her teacher sent out an email to parents inviting them to the final performance, which would take place in the classroom. She mentioned that some of the poems got very personal and emotional. I didn't want to inhibit Lindsey or others from expressing themselves fully, so I opted not to attend.

Lindsey threw herself fully into this assignment, with more enthusiasm than usual. She is a huge "Hamilton" fan and has gained a great appreciation for expressing oneself through spoken word.  In the same way I used to go to "English" class and kids now go to "Language Arts," I think that spoken word poetry is the new name for rap. It truly is an art form.

Her topic was on popularity, and why we as people care so much about how others look or dress, instead of what's inside a person.

This week was their performance day in class, and it was clearly the highlight of her day and week.

Some students were moved to tears by the readings -- one student burst into tears after her performance. Lindsey got a great response and applause after her reading. Topics ranged from loss, to a divorce in the family, dealing with a chronic illness, or just plain loneliness. Lindsey learned through this that a girl in her class is bullied by other students before school, though Lindsey has never witnessed it. She now makes it a point to say hello to her every day.

I'm so grateful that our kids get to have experiences like this through their school.