Life with Multiple Chronic Illnesses

In a word, confusing. What is causing the symptoms? Are these conditions impacting each other?

I have Crohn’s disease, hypothyroidism, and Seasonal Affective Disorder. What is causing my fatigue? My brain fog? Why does my whole body hurt? What is throwing off my sleep schedule?

When you are navigating multiple diagnosis, specialists make it more confounding. I had a gastrointerologist who refused to consider how my thyroid impacted Crohn’s. Luckily my PCP manages both my mental health and thyroid stuff, so she can at least see how the pieces fit together. After breaking up with my GI, I’ve been trying to pull my PCP more into Crohn’s management, but she is reluctant to do so (understandably) because she is not a specialist.

Hypothyroidism and SAD both get worse when the temperature drops and the sun goes away in the winter. Both can affect food cravings. Fatigue also makes it a challenge to cook every meal balanced and unprocessed. It’s a slippery slope that can lead to a Crohn’s flare.

An active Crohn’s flare can mean my thyroid medication isn’t being absorbed correctly. Chronic diarrhea and vomiting messes up my metabolism. Infection in my guts can lead to fever and other fluctuations in body temperature, regulated by thyroid. After a Crohn’s flare, what is the cause of lingering fatigue and brain fog?

How do I get the diagnostic testing and care I need to manage comorbid chronic illnesses during a public health catastrophe and global pandemic?

This has nothing to do with how much kale I eat, if I am doing yoga, or if I’m “deciding to be happy.” This is about an overspecialized medical industry that cannot see patients and their conditions as whole systems because they are miopically focused on specializations instead of taking a holistic systems approach.

Cheezy Cauliflower

Fucked up must have sauce:

  • 1/2 cup raw cashews soaked over night (or soak in boiling hot water for 30 mins-1 hour), drain, blend on high for 1-2 minutes
  • 1/2 cup nutritional yeast
  • 1 tsp Garlic powder to taste
  • 1 tsp salt to taste
  • 1/2 tsp cumeric to taste
  • 1/2-1 cup boiled cauliflower (use more or less depending on the texture and flavor you want)

Pour sauce over boiled cauliflower. Eat the cauliflower with fresh cracked black pepper on top.

Surprising Maintenance

A close friend of mine died a month ago and I am surprised the grief didn’t put me in a flare. Its been rough.

I am eating whole food plant based most days, although not gonna lie I had some dank lamb gyro comfort food and that was pretty amazing. Eating at restaurants a lot but still trying to limit fried and greasy foods.

My mom got me an Ethiopian cookbook for my bday and I’m very excited to make that happen at home. Hoping investing in some spices now will pay off in flavor for months to come.

The sun set today at 1030am. I am seasonally affected.

Cauliflower Biriyani with Tahdig

It’s a little different from what I expected because I didn’t drench every layer in ghee, but I made biriyani today and it was worth every minute of the two hours it took.

Simmering onion, pepper, cauliflower in spices, water and cashew yogurt
Olive oil, salt and parboiled rice; this will transform into the crispy tahdig
Add layers of veggies, rice, and saffron infused water. If you want the real biriyani experience, add pads of butter or ghee at this stage.
Steam for 30-40 mins, or until the rice on top is cooked. Mine took an hour, but I did not rinse and soak my rice.
Rice grains are all separate and not sticking together (in arabic, moufelfel)
Crispy tahdig perfection at the bottom of the pot. Now accepting offers for marriage.

Food Diary 9-6-20

Today I taper down to my last 5mg of steroids. The CDED has been going well, especially because it allows me to eat vegan sushi. Yes I will eat sushi for every meal thank you.

I have developed a few delicious potato dishes.

One is smashed potatoes with a little water reheated and mixed with cooked spinach, with spices and salt and black pepper to taste.

Another is smashed potatoes with avocado, salt pepper and spices.

Another is smashed or cubed potatoes with a lemony pesto. Pesto: fresh basil and parsley, beet greens (or any other greens, I just happen to be growing beets in my yarden), juice of 1/2 lemon, salt pepper spices nutritional yeast and enough water to make it a semi liquidy sauce in your blender. A runny sauce is good because the leftover dry ass potatoes will suck it up.

So week one has been fine. The highlight was a particularly delicious cantaloupe. I had a 4 BM yesterday. I am anticipating some diarrhea when I taper down to 5mg but perhaps I’ll be pleasantly surprised?

Food Diary 8-29-20

Well I guess I was doing the Crohn’s disease exclusion diet wrong. The steroids are almost tapered out and I had explosive diarrhea the last 3 days. I got some better clarification on exactly what to eat and when.

I can’t really afford enteral nutrition/meal replacement. I’m going to try just following the allowed foods in the Crohn’s disease exclusion diet.

Here’s the new plan.

Mandatory foods:

  • 2 roasted potatoes a day
  • 2 bananas a day
  • 2 apples or applesauce

Other daily foods:

  • Strawberries
  • Melon
  • White rice
  • Tomatoes
  • Cucumbers
  • Avocado
  • Carrot
  • Spinach
  • Lettuce
  • Onion
  • Herbs, garlic, ginger
  • Lemons and limes
  • Fresh squeezed orange juice
  • Honey

And, regrettably, I will be taking a hiatus from coffee for 6 weeks. Seeds, nuts, legumes, & whole grains will get added in after 6 weeks, as well as a larger variety of fruits and vegetables.

Worst case scenario, after another 6 weeks I am still having diarrhea. At that point I will consider doing an elemental diet for 2-3 weeks, then back to this diet to reintroduce solid food. That should give me some time to save up money to buy at least 14 days worth of elemental meal replacers. Which costs $500, and even if you make it yourself, costs at least $300 and tastes like shit.

Yes I am so determined to not go back to biologics that I will endure even a disgusting liquid meal replacement as my only nutrition for two weeks. I’m fucking serious. There has to be something other than remicade and humira. FML.

Saag, oil free

  • 16 oz frozen spinach
  • 1/2 onion
  • 1 clove garlic
  • Juice of 1/2 lemon
  • 1 T tahini
  • 1 t cumin seeds
  • 1 t garam masala
  • 1/2 t ginger
  • 1/4 t black salt or asoefetida
  • Nutritional yeast, salt, pepper

Put a small amount of water in a saucepan. Steam onions and garlic. Add spinach. Cook on medium heat until it gets hot.

Put lemon juice and tahini in a small container with a lid and shake it to emulsify. The less liquid the better, try to make it creamy like sour cream consistency. Add more tahini to thicken if necessary.

Put spinach in blender. Add tahini cream and spice. Puree. An immersion blender would work too.

Serve with brown rice or flat bread.

Rice + Lentil Flavor Explosion

  • 1/2 c rice
  • 1/2 c green lentils
  • 1/2 onion cut into moons
  • 1/2 c peas
  • 2 dates chopped into 1/2 cm pieces
  • 1/2 t cinnamon
  • 1/2 t cumin seeds
  • 2 T berbere spice blend
  • 2 c water
  • Salt & black pepper to taste, + nutritional yeast to get those B vitamins!

Put everything in a sauce pan. Stir. Bring to a boil. Stir. Turn down heat to low summer for 45 mins. Stir. Let sit 5-10 min before serving.

The dates and cinnamon add a warm, earthy sweetness that compliments the savory cumin and berbere, and the bitterness of the peas.

Symptoms 8-21-20

  • Pain 2/10
  • Bloating 1/5
  • BM 5/7
  • Fatigue 1/10
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