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.