Ordinary Everyday Week 3

What’s that you say? Week three? Surely it’s a record.

This week’s theme was “AT PLAY”. Such perfect timing because it’s been warm! But I haven’t caught them playing outside. So today at 4:30pm when it was time to post a picture, I yelled for them all to go jump on my bed. They loved it! The older two realized they could touch the lower part of the ceiling and really wanted to hang on it. Um. No.

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Lulu has been having allergy issues. I thought it was the Christmas tree. Then I thought the post-nasal drip from the tree irritation turned into a cough. Then I thought the cough turned into an infection. So I took her to the doctor last week. He prescribed an antibiotic, albuterol nebulizer treatments and a referral to an allergist. She always envied Ellie for getting to use that machine until about two minutes into her first treatment when she had a baby panic attack. She had a hard time going to sleep and woke shortly after with a rash on her stomach.

We got right in to the allergist. They did testing right then and there. For some reason, I thought this referral, appointment and testing process would take months. It took four days. She’s crazy-allergic to oak trees and also reacted to some other trees, grasses, molds, cats and dogs. I’ve been working out how to address this. She has started having oral allergic cross-reactions but hopefully starting Singulair will help with all of it.

I have asked a few times for thoughts and advice on Facebook. I have friends that have dealt with allergy & asthma issues for years, not to mention a few pharmacist and doctor friends. So yes, I’m openly asking for advice. Now I want to word my next sentiment carefully because I get it, I really do. I get that people have had success with certain direct-marketing products. They are excited to share. They are excited to get other people involved. They are excited to pick up a little extra income or discounted product. I’ve seen photographer friends get super-pissed about the social media sales pitches, but I haven’t gotten pissed myself because it was just a few short years ago that we were all excited about learning photography and bringing in clients. I’m sure we turned off a fair amount of friends in the process. But that’s where my understanding ends.

When I’m talking about reactive airway problems and potentially serious allergy issues in my kid, and someone is aggressively trying to sell me something out of their own hands for that kid to breathe in or worse, ingest…I don’t understand that. I’ll give unsolicited advice and opinions on parenting & health all damned day long, but I will not try to convince another parent to put something in their kid without the support and advice of a doctor. Now I’m not anti-direct-marketing. I like connecting with someone and trying different products that others have had success with. I enjoy supporting their endeavor. My kids take Juice Plus. I use essential oils here & there, but we don’t ingest them. I think Spark is awesome (because it is). I love me some cake batter-flavored ViSalus shake powder. I’ve been given information on certain products and declined to purchase or asked for more information to consider (and re-search). And then I’ve been aggressively pursued after declining. I’ve been assured that their product works and is safe and awesome and has actually cured cancer in their cousin’s neighbor. And Crohn’s. Twice. That’s all well and good. But let’s all remember that we’re responsible for our own actions. While I’m ultimately responsible for what I believe and what products I buy & use, if you’re selling something, you are assuming a certain amount of ethical responsibility as well. You’re using sales tactics you might not fully understand in order to offer relief from medical conditions you don’t fully understand. Back off.

I’ve read the above paragraph four times and keep thinking I should reach out to a few people and apologize in advance; that I should say, “Oh no, not you, your thing is totally cool….” but even if I’m good with our interchange, I think it’s important for anyone selling anything to hear this perspective. I think some companies tell their people that if their sales pressure pushes people away, then they weren’t friends in the first place. Please consider that if you’re pressuring someone into buying something, maybe it’s you that’s being the shitty friend.

Peace out.

Nana Linda - W.A.Y. To go girl. When someone is sick the best sales approach is ask your doctor is she would recommend this and get back to me. The end.
We raised a smart cookie. BTW pictures are great. Need one to go by best picture ever…three kids on a sheet.

Ordinary Everyday Week 2

The theme this week was “smile” or “portrait” and I immediately realized how little of this really simple type of shot I’ve done here. Just a kid by a window. My favorite place at the Indiana house was by the front door. The light was nice and I could easily shoot without getting our old carpet in the frame. I love these windows more than our front door at this house. Ellie was at a friend’s house so she missed out.

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Why does kissing a dog feel so much like trying to not kiss a dog? You go in for a smooch and they’re all paws and noses going in the wrong direction. It’s like what you were afraid your kiss would be.

Laura - These are so adorable…as are your subjects! Love the bw’s especially as you do them so well :)

Ordinary Everyday 2015 Week 1

Ah the freshness of renewed optimism in a new personal photo project. I love jumping into challenges, especially at the beginning of the year. I’ll tell ‘ya though, this group of chicks I’m doing “Ordinary Everyday” with is fantastic and highly likely to keep me going all year. The most story-worthy thing we did this first week of 2015 was make tamales with Grandma Mari. This process is no joke. She’s asked me about doing it a few times in the past, and I talked her into doing it here this year.

Don’t know what a tamale is? It’s an amazing Mexican dish with meat or beans rolled up in a corn/masa layer, wrapped in a corn husk & then steamed. They’re usually made in giant quantities. I bet there’s a cool cultural reason for this other than the fact that it’s a very labor-intensive process that one wouldn’t repeat on a regular basis…but I don’t know so I’m going with the labor intensiveness.

Grandma Mari showed up with Aunt Darcey & Cooper on Friday morning. The meat and the chilies were both cooking by noon. The husks were soaked overnight. An insane amount of salt, garlic and lard (oh so much lard) went into the prep of the ingredients. The husks were smeared, expertly by myself using a Pampered Chef icing spreader, I might add–with a masa and lard mixture. I’m not sure what’s in the masa. Corn. Duh. But other stuff too because it’s a doughy mixture. They were filled, rolled and either steamed or put in bags to freeze. We made 25 dozen of those boogers. It was a very cool process to learn and judging by the few we reserved out for dinner, they’re damned good.

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Happy New Year!

Nana Linda - Wow! Great Lary tradition passed down.

The State of the Guts. December Edition.

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In reconnecting with friends and family over the past few months and especially the Thanksgiving holiday, I realized that all I did to share about my health was post on social media once or twice. I had a few people ask, “Oh yeah, you were sick. Whatever happened with that?” I’ve mentioned it here and there but not laid it all out there. This is partly because it’s not entirely necessary. My close friends know what happened and the whole deal so it doesn’t benefit me all that much to share any more than I have. I’ve noticed the annoying tendency to overshare when I’m getting to know someone though. Health or something related will come up in conversation and I’ll hear myself going into way too much detail. It’s like I’m sliding down a muddy riverbank. I want to stop but I can’t figure out how so I just keep sliding. How’s that for an analogy? I walk away sure they think I’m crazy, wishing I could take it back. Why would anyone discuss their guts in the first few conversations with someone? I hope I’ve gotten that in check!

In the last month or so, I’ve been trying to educate myself on auto-immunity and diet. I’ve found myself interested in personal stories when a writer shares their background when I’m reading their blog or perusing a new cookbook. I imagine it’s a natural thing to look for similarities and differences in stories when it comes to something so broad-reaching and unknown as this whole auto-immune thing.

So here it is.

After a very stressful fall and completely hectic holiday season, we started the Advocare 24-Day Challenge in January. We were eating super-clean. It felt good but maybe not stellar. I’d had intermittent stomach cramps for a few years that had returned after a stomach bug over Thanksgiving. These were holding stable or maybe getting a little worse. My stomach would cramp and burn for just a minute, usually in the afternoon.  Looking back, I almost always felt like total crap before and after; lethargic and irritable. We went on a cruise at the end of January. The pain stopped me in my tracks more than once but would still subside quickly. I wasn’t having any other notable gastrointestinal symptoms that would have been clues to something being wrong other than heartburn. By the time we landed in Chicago & drove home, I was pretty sure I had a urinary tract infection. My belly was tender and I felt feverish. The next few weeks were a blur of urgent care visits, one primary care visit, round-the-clock ibuprofen for pain and elevated temperature. I complained to friends more than I ever have complained about anything in my life. I knew something was wrong. I prepared for Bradyn and Lulu’s birthdays early as best I could thinking I might have to have surgery for something like gallbladder or appendix.

I went to the ER on February 12. I was not in “enough pain” for a CT scan & was sent home. I went back to the ER the next morning, dropped off by my friend Andy and met by my friend Hilary. These two fielded more texts about my malaise than you can even imagine leading up to this point. Hilary is a physician and told me we weren’t leaving without a CT, which I was promptly offered on this visit. The diagnosis of Crohn’s Disease with bowel micro-perforation and abscesses was immediately rendered and I was admitted for IV antibiotics to treat the abscessed infection. The Crohn’s diagnosis hit hard but was also a relief. It was better than a shoulder-shrug and referral back to primary care. It also wasn’t a huge surprise after a CT 8 years earlier for what I thought was food poisoning. We had it read by a surgeon who said, “This probably wasn’t food poisoning. Do you have Crohn’s? No? Well, don’t be surprised if you do end up with it down the line.” I’d filed that under “Don’t worry about it until you have to.” even through years of ineffective treatment for what I hoped was heartburn.

The hospital stay was short and I felt much better after the first night. They started me on Pentasa which is pronounced “pent-ass-uh”. It’s the same drug as Asacol, pronounced “ass-uh-call”. Oh to be in the board room when they’re suggesting and approving these drug names. Pentasa is a gut anti-inflammatory which isn’t usually effective for Crohn’s but my dear doctor, Dr. Oh (lovingly referred to as Frit-Oh because I swear I smelled Fritos on his breath when he first visited me) wanted to be doing something to prevent further inflammation. I was also started on steroids which immediately brought on a crazy that didn’t lift for months.

Following discharge, I was started on Imuran which is a pill, kind of a mini-chemotherapy type of treatment designed to scare your immune system into a corner to stop it from attacking your guts. A follow-up CT revealed continued intestinal inflammation and persistent abscesses requiring heavy antibiotic treatment. Dr. Oh said, “Not even one drink on this Flagyl. It will make you violently ill. It is like the Antabuse they give alcoholics.” Andy and I thought that called for going out for a drink that night before starting them. Something or another happened to foil this plan so I took the first dose that afternoon. Now I’m not even kidding you a little bit when I tell you that Brian texted me TWO HOURS LATER to say, “Change of plans. Moving to Omaha in June.” For the next 25-ish days, I had every ridiculous side effect possible from those antibiotics in addition to the steroid crazy. Add in a sudden move and new illness and the term “shitstorm” doesn’t even come close.

My friends that had rallied around me were now carrying me through each day. I don’t think I had a clear thought until some time in the summer. I had another CT that showed a bowel to appendix fistula & awarded me the bump up from Imuran to Humira. Humira is a biologic drug which means it is derived from human antibodies which try to turn off the part of the immune system causing the inflammation. This is a sloppy explanation of biologics. They’re fairly new. There’s not a lot of long-term research on them and they’re crazy-ass expensive. I had decent days and kind of awful days in those spring months. I’d feel okay and then suddenly feel like the flu was coming on with chills and aches. The amount of time I spent in bed should have been alarming but everything was so chaotic, we just went with it. I didn’t know what caused those days but now I know I’d simply overdone it physically, be it trying a yoga class or putzing around the house pretending to get ready for the move.

We moved in June. To say I handled it gracefully…well, that couldn’t be further from the truth. I was awkward and inward until the last night when I cried a lot and drank even more, ending the night by up-chucking on my friend Jill’s carpet. That’s okay though, they were having it replaced the next week. My friends that had carried me through the last few months had to literally carry me to bed. I know, it’s a fine how-do-ya-do for supporting me through the roughest season of life. June and July were pretty bad. I was learning to accept that Crohn’s can really wreck a person. I stayed in bed until 9 or 10am, would have an active hour or two in the afternoon and be miserable again at night. I was between doctors and honestly, too brain-fogged to advocate for myself.  I took my kids to the pool a grand total of ONE time and the awesome Omaha Zoo twice.

August was a little better. I was less miserable, the kids started school, and I got in with my new doctor. She spent an hour with me asking questions and getting to know me. She noted my long-term antibiotic use for recurrent UTI’s when I was preschool age as well as iritis in middle school as early contributors and signs of auto-immune predisposition. By mid-September, I was feeling great aside from some joint pain, mostly in my wrists and hands. I was painting Ellie’s room, walking with the dog a lot and even jogged just a little (running is out for good, that’s for sure). I was looking forward to a weekend in Chicago with my Indiana friends. I was tracking calories with an app on my phone & had 100 calories left one night so I popped a handful of trail mix before bed. I was in pain less than an hour later and in the ER the next night with what was probably a little obstruction, possibly in my handy little fistula. My GI doc doubled the Humira and effectively dodged my request to reconsider this high dose after six months or so. “After a clear colonoscopy, maybe.” she said.

Since that flare in September, I’ve done a much better job of pacing myself. I take any twinge or pain as a sign to not just slow down but to stop. It’s incredibly defeating to feel like doing something and to feel good while doing it, whether it’s eating a few apple slices or working out, just to pay for it the next day in the way of feeling cruddy. I’m usually just guessing as to what caused the twinge or pain. So I just stop. I stop and let my body catch back up for a day or so. I accepted the diagnosis and I accepted the medicine much easier than I’m accepting being eternally limited. I’ll get there.

Kate - Nancy..this was awesome and I’m sure it took some guts (No pun intended..well, maybe a little pun). I hope 2015 is calm and healthy with Lulu being an angel. Much love to you!

Kate Clarke - Nancy..this was awesome and I’m sure it took some guts (No pun intended..well, maybe a little pun). I hope 2015 is calm and healthy with Lulu being an angel. Much love to you and yours!

holly - Nanc. I’m just catching up. I need to follow your blog more closely. I knew what was going on… but I didn’t. I wish I could’ve been there for you. You’re such a strong woman, so if you were having to stop and slow down. I know it was bad. Cheers to on and upward. Cheers to 2015 being a better year. Cheers to health!

On addressing the assholery

When she is good, she’s quite literally, totally awesome.

A few weeks ago, I chaperoned the field trip to the pumpkin patch. So many parents went that most of us were with just one or two kids. I got to spend the whole day with just Lulu. It was so fun. Tiring and overwhelming but fun. We went where she wanted to go and did what she wanted to do. It was like the preschool days. We fed the goats, llamas and camel for probably 20 minutes. One llama wouldn’t eat from her hand for the longest time but would eat from mine. When it finally ate from hers, she was so excited.

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No one, least of all I, can deny the beautiful joy that is a happy Lulu.

But when she’s bad, she’s so bad. Mornings are awful. Afternoons are rough unless there’s a friend over. And evenings are total shit shows, even worse when she’s had a friend over all afternoon. She’s whiny and defiant and volatile and miserable and hungry and tired and mad and sad and just awful. I rarely make it to 6:30 without yelling at her & I’d given up yelling a long time ago. But here I am again, yelling right in her adorable face because I have really and truly exhausted all of the options I have on my list right now. Gentle reminders, consistent rules, firm corrections, predictable consequences, confident follow-through and early bedtimes. WHAT MORE CAN I DO? I have to put more desperate shot-in-the-dark options on the list. We are doing this behavior chart.

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When she hasn’t already fallen off the asshole cliff, it’s effective. When she’s too far gone, she could care less. I had already decided to gradually cut back on wheat & corn for myself (another post, I’ve been feeling fine, bulletproof even) so the gradual decrease is going into effect for her too.  She’s had skin issues forever & now this terrible adjustment phase…it’s worth a try. Now to bait her into giving up her precious hot lunches at school.

The other two have pretty much lost their patience with being patient with her. At first it was like a fun project to help out. But they’re over it.

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She’s an angel at school. I’ll take that over good at home/bad at school any day of the week.

Note: This getup she had on yesterday, she wore this to ride the carousel at Scheel’s. It’s a stained school t-shirt, leggings with holes (that I bought last week), an ill-fitting skirt, hair ties as bracelets and a sweet side ponytail. I oftentimes remark that she looks like a walking garage sale. Brian said she looked like the girl from Napoleon Dynamite.

I can’t argue with that. So we watched the movie last night & Lulu’s added to her list of one-liners, “Whatever I wanna do. Gosh.”

Karlee - She sounds like my little Charlie!

Samantha Parks - This sounds just like my londyn…before we cut out dairy. Amazing transformation. It took about a month to get it out of her system but boy was she a new child. We went from screaming tantrums rolling on the floor of Walmart (kicking, spitting, flailing- all while I was very pregnant) to a more ‘normal’ disposition (Tho she is still strong-willed and a free-spirit). A friend went thru something similar with her son (said he seemed possessed) and within a month of cutting out dairy he was a new child. I was skeptical but boy am I glad she mentioned it!

Nancye50 - Thank you, Sam! We have eliminated dairy for 3-4 weeks twice with no change. I had her one-on-one last week and I really think she’s just a high-needs kid living in a low-key, independence-oriented family. So glad it worked for Londyn. If issues crop up again, we’ll probably revisit the diet issues. Kindergarten was pretty stressful for her. It takes a lot of effort for a kid like her to behave all day, every day!