Pandemic Chronicles Continue

How is everyone doing? Here is my update:

We All Need to Step Up

Before March 13th the day everything officially shut down here in Los Angeles, I often thought, “I am managing a lot, and I don’t always have the energy to contribute to change on any other deeper level besides helping my family and doing what I can for people with Crohn’s and Colitis.” But now in 2020 — this fantastic year — there is too much going on and besides the need for help from all to continue to combat injustice, it is getting harder and harder for me to just ignore Mr. President’s daily shit show. I didn’t go to any protests, but I am certain we all need to show up and participate right now so I am doing what I can to help. Last week President Obama (miss him sooo much!)


In 2016 right after the presidential election which resulted in an unexpected win by a candidate who is a businessman not qualified to run a country and among other questionable character issues in my opinion, I immediately was sucked into the news. Our president instituted a travel ban that was supposed to keep refugees and immigrants from certain countries from entering the United States. I don’t even understand how this could have even been carried out, what his policy actually was, and how he really thought this would be successful. It ended up causing chaos in our court systems, judges had to intervene, and advocacy groups sprang into action to help those affected. I would look up the facts now, but it is too upsetting to revisit. I remember being infuriated, feeling helpless and at some point, I decided to just shut it off. Since then, I engage very little with what this administration is really doing in a deep dive way. I get sound bites, read headlines and occasionally read an article. …


It’s just warm, comforting, delicious, and turmeric and some of the other spices might have some health benefits. You can research those yourself or just drink it because it’d good! It can be a cue to take a break in your day. Prepare a batch and sip when you are reading a book, watching whatever you are bingeing, or just sit and look out the window, or at your dog, or at a magazine or cookbook. Or just stare into space and think. Sit outside in the sun for a few minutes with it. You decide.

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My recipe

3–4 cups of…


We know that people with IBD have different dietary restrictions and some or on a specific diet. C to C co-founder Stacy’s son Lowell has been on many diets, most recently the Crohn’s Disease Exclusion Diet (CDED) diet which is a recently researched very specialized diet that is to be used in conjunction with patients who are getting 50%of their calories from formula feeding through a G Tube, nastogastric tube or just by drinking the formula. The diets is supposed to work in the same way as if the patient was on 100% enteral nutriion but at least allows them some food. …


Over the years since Lowell has been sick to varying degrees, my energy and attention has been required for so many of the medical issues he has coped with, and it has been my honor to help him, and my mission to get him better. As his mom, I am the primary person there to help, to figure things out, to pick up the pieces, to make decisions and generally be the manager of this complicated situation. At his diagnosis at age 2, it was obviously shocking and traumatic for our family to hear that our youngest son has a lifelong, incurable, chronic illness that at the time, we didn’t understand that much about. As the years went on and he was able to just be a kid like his peers, go to school, play sports, etc, I learned to accept a certain level of worry about his future and when there were times that things seemed stable, to relax a little. Though Lowell was never really in remission because of the aggressiveness of his particular Crohn’s disease, during the first decade of his diagnosis, he was mostly able to live his life, as were we without the disruption that later came as he was turning 13. During the years aged 2–12, he tried several medications, dietary interventions including EEN (Exclusive Enteral Nutrition-only ingesting formula) and travel to get the opinions of other top doctors in the country. It was difficult but seemingly stable. …


It’s an ordinary Thursday in LA and I have just returned from the second of two trips I took this summer. The sun comes up so early as the days grow longer and it feels like it is light forever, the sun baking the concrete and all of us living in the parts of the city that are less populated with trees, beaches and mountains. The blackout shades I have leak light at the bottoms and sides, and in the winter these little slivers of light seem less severe.

It’s hard to sleep when it always seems light. I mean, there are places, further away from the equator where during periods of the year it never gets dark. I suppose one gets used to this and sleep is just sleep at the times that it is supposed to be regardless of light. My observation is that for the last 10 years or so, with climate change making it hotter and what feels like a stronger sun, the summer in Los Angeles feels a little more oppressive. I know, I know, complain about LA weather-some people find this outrageous! But having grown up on the east coast with seasons, different light variations, and unpredictable weather that includes rain, thunder, snow, and clouds, the monotony of 25+ years here on the west coast and it’s smaller window of temperature and precipitation changes, still feels less familiar, less like this is what weather is. Cold, snow, rain, humidity are in my DNA-and that’s not to say that I always enjoy such weather, but it is what feels “normal” I am not going to lie, I certainly don’t miss the brutal summer humidity of the east coast which never failed to cause bad hair days where I was tempted to just chop it all off. …


My son is 2 years old and he is having a colonoscopy, the first of many on the 7th floor at Cedars-Sinai Medical center in the GI Suite.

He had been having loose stools since he was around 18 months old and when blood showed up, our pediatrician said he needed to see a specialist thus necessitating this test. Looking back, I had no idea how this would affect our family, what my son’s diagnosis and prognosis would be, and the wide reaching impact this would have on our family of 4. …


We are off to Boston for Lowell’s wish to meet Brad Stevens, coach of the Boston Celtics, granted by the Make-A-Wish Foundation. More on that when we are back.

Since returning from the Mayo Clinic at the end of January, Lowell has been moving in a positive direction. Pain is ongoing as are the sometimes confounding symptoms but we have been following the basic tenets of the Pain Rehabilitation Center (PRC) program to keep functioning despite these issues. For him, it is to go on with his day and not let these things derail him as they had in the past. …


This situation has escalated over the past 10 days while we have been in New York City. There were emails and conversations with doctors, a visit to urgent care, and an attempt to resolve things without ending up in the hospital. This is a typical scenario with a chronic illness, and in particular for Lowell, a reality we face managing his Crohn’s disease while traveling. There are many reasons why traveling with Crohn’s can be hard — being away from normal routines, a different diet, susceptibility to infection due to lowered immunity, increased inflammation from altitude in travel, etc — and for our family, this has impacted our lives. Mainly, our travel has been very limited over the past few years. This trip seemed fun because who doesn’t love New York City around Thanksgiving? …


I’m on a plane from New York/La Guardia to Chicago/O’Hare with People and Us magazines tucked into the seat pocket in front of me. Yes, I purchased them both along with the big bottle of room temperature Smart Water and a pack of Lifesavers from the Hudson News stand right before it was time to board. This is my flight routine, and I admit this is my weakness, trashy magazines when I fly.

I was in New York City working on our upcoming Rock the Night to Cure Crohn’s and Colitis event on December 1st. This will be our 2nd in NY and our 9th one overall. With all that is going on, it’s a bit of a push for us to muster up the energy for the planning and executing of these events, but as I just told someone, it is like a phone call that we keep answering because our families and the larger IBD community continually motivate and inspire us to keep going. If we don’t answer the call, it will keep on ringing and nothing will move forward. It helps immensely that we have a growing number of east coast people who support us by volunteering and getting guests to attend. …

About

stacyjdylan

I write about caring for my son with Crohn's disease, feeding everyone in my house with food issues, patient advocacy, and my charity. www.connectingtocure.org

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