Native American Heritage Day Feast – Gluten Free, Dairy Free, + Plant Based

photo from Sonya Kamoz

I want to start off this holiday recipe compilation with two disclaimers. 1. I do not believe in traditional Thanksgiving and therefore, I prefer to honor Native Americans during this holiday instead. I did my best to combine common Thanksgiving comfort foods with recipes that pay homage to Native Americans. 2. I cannot eat due to my chronic illness. So all of these recipes are either ones I’ve made before I became chronically ill, recipes I’ve found online with rave reviews, or recipes I’ve developed through experimentation that have been given the stamp of approval by friends and family. Even though I can’t eat, I have a passion for cooking. It’s my unique way to connect with food.

I know how challenging holidays can be when you have severe dietary restrictions. Three of the most common being gluten free, dairy free, and plant based. I’ve developed 10 recipes that combine comfort, nostalgia, and new traditions. Some recipes have been slightly altered from family recipes and others are ones I’ve learned from Native chefs. I hope you’ll give a few of these dishes a chance at your holiday table this year!

Decadent Mac and Cheese

photo from Daiya

Ingredients:

1 box Daiya Cheddar Mac n Cheeze

1 box Daiya White Cheddar Mac n Cheeze

1 bag Daiya Cheddar and Mozzarella Shreds

1 bag Daiya Parmesan Shreds

6 slices Daiya Smoked Gouda

1 container Daiya Roasted Garlic & Herbs Cream Cheeze

1 tsp Paprika

1 tsp Onion powder

1 tsp Garlic powder

1 tsp Black pepper

1 tsp Salt

Instructions:

1. Get a large pot of salted water boiling.

2. Prep a 9×9 casserole dish or something of similar size by using oil or butter to grease the bottom and sides.

3. Preheat oven to 350°.

4. Cook the elbow pasta according to box instructions.

5. Once pasta is cooked and drained, add in both cheeze sauce packets (they’re liquid) as well as half of the bag of cheddar & mozzarella shreds and half of the bag of parmesan shreds. Give this a good stir.

6. As the cheese is incorporating, add in the cream cheese for extra creaminess. Also add in all the seasonings and herbs to taste.

7. After the cheese sauce mixture and pasta are well mixed, pour into your casserole dish. Even out the mac and cheese across the dish.

8. On top of the mac and cheese, sprinkle the remaining cheddar & mozzarella shreds and parmesan shreds. Cut the smoked gouda slices into fine pieces and sprinkle on top as the final layer. Do not mix!

9. Put the dish in the oven and let the cheese get bubbly and brown (should be 20-25 minutes). Once it’s melted to your liking, take out and enjoy!

French Onion Mashed Potatoes

photo from How Sweet Eats

Ingredients:

6 tbsp Vegan butter

4 Yellow, sweet onions thinly sliced

Pinch of salt

5 lbs Russet or yukon gold potatoes, washed and peeled

12 tbsp Vegan butter

1 & 1/2 cups Silk heavy whipping cream

8 oz Chao Creamy Original Cheese grated

2 tsp Salt

1 tsp Black Pepper

Instructions:

1. Heat the butter in a skillet over medium-low heat. Add the onions with a big pinch of salt. Cook for 10 minutes, stirring often, so the onions begin to cook down. After 10 to 15 minutes, reduce the heat to low. Continue to cook, stirring occasionally, until the onions are golden and caramelly, about 45 to 60 more minutes. Continue to cook until your desired caramelization is reached.

2. Wash, peel and chop your potatoes. Place them in a large bowl and cover them with cold ice water. Slice the potatoes in half or in quarters, depending on the size. You want the potato chunks to all roughly be the same size and not too small.

3. Place the potatoes in a large pot of cold water over medium heat. Season the water with a big pinch of salt. Bring the potatoes to a boil, then boil until they are fork tender, about 12 to 15 minutes. (If your potato chunks are smaller, check after 10 minutes.)

4. While the potatoes are boiling, heat the butter and cream in a saucepan over medium-low heat until the mixture is warmed through.

5. Drain the potatoes well and place them back in the pot. Use a potato masher or ricer to begin mashing the potatoes into the consistency you enjoy. Mash in half of the butter and cream mixture and 1 teaspoon salt. At this point, if you want to use a hand mixer, now is the time. You don’t want to over mix! Keep it on low speed and move it around the bowl constantly, just for a minute or two, breaking up any larger chunks that didn’t mash. Stir in the rest of the milk and butter mixture. Stir in the gruyere cheese. Mix slowly, allowing the cheese to melt. Stir in half of the caramelized onions.

6. Serve the potatoes with the rest of the caramelized onions on top.

Fried Cornbread

photo from Delish

Ingredients:

1 & 1/2 cup Yellow cornmeal

1 cup Gluten free flour

1 tbsp White sugar

1 tbsp Baking powder

3/4 tsp Salt

1/4 cup Almond milk (plus some lemon juice to create “buttermilk”)

2 Eggs (Bob’s Red Mill Egg Replacer)

6 tbsp Vegan butter, melted

1/4 cup Vegetable oil, for frying

Vegan butter at room temperature for serving

Instructions:

1. In a medium bowl, whisk together cornmeal, flour, sugar, baking powder, and salt.

2. In a large bowl, whisk buttermilk, eggs, and melted butter. Stir dry ingredients into wet ingredients, until just combined.

3. Heat a large heavy bottomed skillet over medium heat. Add 1 tablespoon of oil. Spoon about 2 to 3 tablespoons of the cornbread batter into pan, spread into an circle, about a scant ½-inch thick. When little bubbles appear, about 2 to 3 minutes, flip and continue cooking until both sides are lightly golden, about 1 to 2 minutes more. Adjust heat to medium-low if pan gets too hot. Repeat with remaining batter and oil.

Three Sisters Dish (hominy, beans, winter squash)

photo from Delish

Ingredients:

1 large Squash (butternut, acorn, etc)

2 tbsp Olive oil, divided

1/4 cup Pure maple syrup

2 bunches Kale

5 cups Hominy (canned and drained is easiest)

4 cups Black beans (canned and drained is easiest)

1 tsp Salt

1 tsp Garlic powder

2 Green onions, thinly sliced

1 cup Toasted sunflower seeds

Instructions:

1. Preheat oven to 400°. Cut squash in half, clean out seeds, and cut into 1” cubes. Place on a sheet pan, toss with 1 tablespoon oil, and bake for 25 to 30 minutes, or until tender. Toss with maple syrup and set aside.

2. De-stem and thinly slice kale. In a large skillet over medium heat, heat remaining oil. Add greens and cook until wilted, 5 to 8 minutes.

3. Add roasted squash, hominy, and beans to skillet with greens and stir to combine. Season to taste with salt and garlic powder, and cook until all ingredients are warmed through, 3 to 5 minutes.

4. Spoon mixture into serving bowls and top with green onions and sunflower seeds.

Roasted Sweet Carrots

photo from Diethood

Ingredients:

2 lbs Carrots

4 tbsp Vegan butter

1 tbsp Black Garlic seasoning

1 tbsp Maple syrup

1/4 cup Brown sugar

1/4 tsp Salt

Optional: Fresh parsley for garnish

Instructions:

1. Preheat your oven to 450° and prep a baking sheet. Peel your carrots and cut them in half. Then slice each piece down the middle, creating “fry” like carrots.

2. Melt the butter in the microwave and then mix in the black garlic, maple syrup, brown sugar and salt.

3. Line your carrots up on the baking sheet and generously cover each carrot in the butter and sugar mixture.

4. Roast the carrots in the oven for 10 minutes. Take them out to flip and stick them back in the oven for another 10-15 minutes.

5. Once your carrots are done, remove from the oven and add the fresh parsley on top.

Sweet Potato Casserole

photo from Candy Potato

Ingredients:

4 cups Large sweet potatoes

1/2 cup Packed brown sugar

8 tbsp Vegan butter, melted

1 tsp Vanilla extract (optional)

1/2 cup Almond or Oat milk

2 Eggs (Bob’s Red Mill Egg Replacer)

1/2 tsp Salt

For Topping:

1 cup Packed brown sugar

1/2 cup Gluten free flour

4 tbsp Vegan butter, melted

1 cup Pecans, chopped (optional)

2 & 1/2 cup Mini marshmallows

Instructions:

1. Preheat oven to 350° and grease a 9×13

2. In a large bowl, stir together sweet potatoes, sugar, butter, vanilla, milk, eggs, and salt until smooth. Pour into prepared dish.

3. In a medium bowl, stir together sugar, flour, and butter until it clumps. Stir in pecans (optional), then spread evenly over potatoes. Top with marshmallows.

4. Bake until cooked through and golden, about 30 minutes.

Cranberry Sauce

photo from Sugar Spun Run

Ingredients:

2/3 cup White sugar

1/3 cup Packed brown sugar

1/3 cup Water

2/3 cup Orange juice

12 oz cranberries, rinsed

Instructions:

1. Combine sugars, water, and orange juice in a medium-sized saucepan over medium heat. Stir occasionally until sugars are dissolved, and bring to a boil.

2. Add cranberries and return to a boil.

3. Reduce heat to a simmer and continue to cook cranberries, stirring occasionally, 10-15 minutes or until all or most berries have burst and the mixture is slightly reduced. The longer you cook your cranberries the thicker your mixture will be, but it will also thicken up after standing.

4. Transfer mixture to a bowl and allow it to cool for at least 20 minutes at room temperature.

5. Cover and refrigerate at least 2 hours before serving.

Stuffing

photo from Epicurious

Ingredients:

1/4 cup Olive oil

1 small Yellow onion, finely diced

2 stalks Celery, thinly sliced

1 tsp Salt

2 tsp Onion powder

1/2 tsp Dried sage

3 tbsp Fresh thyme, chopped

1 tbsp Fresh rosemary, chopped

1 tsp Black pepper

1 loaf Gluten free bakery white bread, cubed

2 cups Vegetable broth

Instructions:

1. Preheat the oven to 400ºF. Lightly grease a 10-inch square baking dish.

2. Preheat a 6-quart pot over medium heat. Sauté the onion and celery in the olive oil with a pinch of salt until onion is lightly browned, about 7 minutes. Stir in the onion powder, sage, thyme, rosemary, 1 teaspoon salt, and several dashes of pepper and turn off the heat.

3. Put the bread cubes in a large mixing bowl. Add the cooked vegetable mixture and toss to thoroughly coat. Pour in the vegetable broth, ½ cup at a time, mixing well after each addition. The bread should be moist but not soggy, so you may not need to add all the broth.

4. Transfer the stuffing mixture to the prepared casserole dish. Cover with aluminum foil and bake for 20 minutes. Uncover and bake for an additional 10 minutes. Remove from the oven and let cool a bit before serving.

Vegan Turkey

photo from The Edgy Veg

Ingredients:

3 cups Vegetable broth

1 tbsp Nutritional yeast

2 tsp Poultry seasoning

2 tsp Onion powder

20 drops Liquid smoke

4 -20 oz cans Young green jackfruit with seeds and hard heart removed

4 tbsp tapioca starch

2 tbsp silken tofu

2 tbsp water

24 sheets Round rice paper

1 cup mushroom gravy

Instructions:

1. To start making the vegan turkey, in a medium-size pot, whisk together vegetable broth, nutritional yeast, poultry seasoning, onion powder, and liquid smoke.

2. Add jackfruit, and bring to a boil. Stirring constantly.

3. Once boiling, reduce heat to medium and cook for 10 minutes.

4. Reduce heat to low and simmer, covered for another 10 minutes or until the liquid has evaporated. Remove the pot from heat and set aside.

5. In a small blender or bowl with a whisk, whip together tapioca starch and silken tofu.

6. Add water 1 tsp at a time as needed (only if you feel that it is too dry).

7. Add to the jackfruit mixture 1 tbsp at a time and mix until it starts to come together.

8. Fill a shallow bowl with warm water and soften the rice paper by soaking each sheet for about 30 seconds. Remove the rice paper from the bowl and place the rice paper on a flat surface and using a sharp knife, cut in half. Place 2-3 tbsp of the jackfruit mixture onto the rice paper.

9. Place wings on a lined baking sheet and broil for 8-12 minutes, turning every 2 minutes until they are lightly charred on all sides. Serve with mushroom gravy.

Easy Apple Crisp

photo from Carolanne Monteleone

Ingredients:

4 jars Apple pie filling

1/2 box Gluten Free yellow or white cake mix

1 cup Oats

1 stick Vegan butter

1 tbsp Pie spices (cinnamon, nutmeg, etc)

Instructions:

1. Preheat your oven to 350°.

2. Dump all 4 jars of apple filling into a ceramic casserole dish or other non-stick baking dish and smooth out so that it’s even.

3. Generously coat the top of the apples with gluten free yellow box cake mix but DO NOT mix it! Add oats mixed with pie spices on top of the cake mix and again, DO NOT mix!

4. Cut your butter into small pads and place them across the whole dish. Try to cover as much of the top with butter as you can (make sure the pads are thin and not too thick though).

5. Stick the dish into the oven for about 30 minutes or until it gets bubbly and golden.

I hope you’ve found some new recipes to try out. Have a happy holiday season!

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Our Government is Ableist: How the Covid-19 Vaccine Rollout Proves the Disabled Community is Expendable to America

The original rollout timeline, on December 14th 2020, put chronically ill folks in group 1b.

The current rollout timeline, as of January 23rd 2021, puts chronically ill folks in the second to last grouping: 4.

This pandemic has been hard for everyone. Our way of daily living was flipped upside down because of a deadly virus plaguing the entire world. 2020 introduced wearing masks in public, socially distancing and not seeing friends and family. But for some people, like those of us in the chronic illness community, not much changed besides a befitting anxiety of dying due to something other than our regular illnesses. We’ve been wearing masks in public every flu season for years in an attempt to lower our risk of contracting a hospital admission-inducing sickness. We’ve been socially distancing and not seeing friends and family out of necessity because most often our bodies won’t allow us to do “normal” activities like run to the grocery store, attend a family gathering, or have a night out with friends.

That’s not to say 2020 wasn’t a hard year for us. In fact, I’d selfishly argue that chronically ill people struggled more than the average person. A lot of us had urgently needed medical care postponed, trouble accessing daily medical supplies, less room available in the hospital to be treated for non-covid illnesses and a constant fear of contracting covid-19 and dying from it.

And in the midst of watching the people around us adapt to a world we were already all too familiar with, we found that suddenly things we’d been asking for accessibility wise for years now were magical appearing in the matter of a few short weeks. Disabled and chronically ill folks alike have been fighting to work from home or have telehealth visits for years. But we were told that it was “not possible” or “too difficult”. Yet suddenly, once the mass of able bodied people needed these things, they were offered without hesitation. These accommodations were seen as inconveniences to society and made the disabled community out to be a burden when all along these were simple things to implement. Society is just ableist.

Months later when the vaccine was finally about to be released to the general public, the chronic illness community finally took a breath for the first time in 10 months. We’ve been following the rules, staying home, doing our part, and being as safe as humanly possible since the virus began. In mid December, most states put out a timeline for the vaccine rollout and the community was ecstatic to see we were in the first group (second subset) set to be vaccinated. Finally! The government recognized that chronically ill folks were at high risk for exposure and high risk of death. But that excitement was short lived. Without warning, suddenly states began changing their rollout timeline and the group priorities. Older Americans got bumped up to the top of the list and began getting their vaccines in the beginning of the new year and the chronically ill community was pushed back to the second to last group. With no explanation as to why, Americans with the highest risk due to chronic illnesses became an after thought.

But why are the chronically ill expendable to the United States? Most of us are young and contribute to society. While it may not be in a traditional way like working a 9 to 5, our contributions matter…disabled lives matter. We are not disposable. Our government has made it clear that chronically ill folks are not a priority and that if we die, they have no empathy. The disabled community is the only minority group that anyone can become a part of at any time without warning. Yet we are treated like second class citizens because no one cares about disabled people until they become one of us. A lot of covid survivors are in for a shock, as “long haulers” seem to have chronic health issues and are now seen as a part of the chronic illness community. This should serve as a reminder to never take your health for granted.

While everyone deserves to get the covid vaccine, the people who are most at risk of contracting the virus and dying from it should be at the top of the list. The government seems to have neglected chronically ill Americans once again. It comes as no surprise and it’s a battle we combat every day. We are not strangers to fighting for the bare minimum. Ableism is alive and well in 2021 and unfortunately, due to complete negligence of the U.S. government, some of us won’t be around to continue to see the time when we can get the vaccine.

*please note that the terms chronically ill and disabled are used interchangeably here because the author identifies as both. But not all disabled people are chronically ill and not all chronically ill people are disabled.

A Thanksgiving Gastroparesis Feast

Holidays are hard with an illness like gastroparesis. Not being able to enjoy the yummy spread of food that’s taunting you at the table seems like a cruel joke. After 7 years of hating Thanksgiving, this year I became determined to partake in all the traditional foods I ate growing up.

Before I go any further please let me remind you that these recipes are low FODMAP friendly but that doesn’t mean they’re a guarantee “safe food” for every person with gastroparesis. They are simply foods that may be tolerated by some people. As most of us know, everything is trial and error and varies by each individual. Tailor these recipes to suit you best.

Now onto the feast!

Not Your Grandma’s Mac and Cheese

1 box gluten free rice pasta (my favorite brand is Bionaturae)

2 packets Daiya Cheddar Cheeze Sauce

1/2 cup Daiya Smoked Gouda Style Block (you can use the mozzarella for this if you prefer)

2 tsp salt

2 tsp paprika (if tolerated)

1. Cook pasta according to box instructions but undercook by 2 minutes

2. Strain pasta and stir in the cheese sauce, salt and paprika

3. Scoop the mac and cheese into an oven safe dish and top with shredded smoked gouda

4. Bake at 400° for 20 minutes

Butternut Squash Soup

A tasty premade butternut squash soup option is also available: Imagine Creamy Butternut Squash Soup

2 lbs cubed butternut squash

1 tsp salt

1/4 tsp black pepper (if tolerated)

2 tbsp cooking oil (I like extra virgin olive oil)

2 cups vegetable broth

1 can coconut milk or 13.5 oz of unsweetened almond milk

1. Preheat oven to 425°

2. Put cubed squash on a baking sheet and toss with oil, salt and pepper

3. Roast for 35-40 minutes

4. Transfer squash to soup pot and add broth bringing mixture to a simmer

5. After simmering for 5 minutes, use an immersion blender (or in a countertop blender) until smooth

6. Stir in milk

7. Add more salt if needed

Scalloped Potato Crisp

3 cups unsweetened almond milk

3 lbs russet potatoes thinly sliced with no skin

1 tsp salt

1 tsp black pepper (if tolerated)

6 tbsp Earth Balance butter

9 tbsp gluten free flour

1. Preheat oven to 375° and lightly grease a baking dish

2. Warm the milk in a small sauce pan over medium heat

3. Lay 1/3 of the potato slices over the bottom of the baking dish followed by a sprinkle of salt and pepper. Sprinkle 3 tbsp of flour over the potatoes and top with 2 tbsp of butter cut into small pieces. Repeat all layers two more times.

4. Pour the warm milk over the potatoes until it reaches the top layer and bake for 45-60 minutes or until the milk has turned into a creamy sauce

5. Let the dish sit for 10 minutes before serving

Simple Mashed Potatoes and Gravy

1 lb russet potatoes, peeled and cubed

About 1 cup of almond milk

Salt to taste

2 tbsp Earth Balance butter

1. Place cubed potatoes into a pan and cover completely with water. Bring to a boil and cook until fork tender (about 15 minutes)

2. Drain potatoes, mash and add in butter, salt and just enough milk to make it smooth

5 tbsp Earth Balance butter

5 tbsp rice flour or tapioca flour

4 cups chicken broth

Salt and pepper to taste

1. Melt butter in a medium saucepan over medium heat

2. Add in flour and whisk vigorously until a smooth paste forms. Continue to whisk until it turns into a light beige color (2-3 minutes)

3. While continuing to whisk, slowly add in broth, salt and pepper until thick

Everyone’s Favorite Pumpkin Pie

A tasty premade pie crust option is also available here: Kinnikinnick Pie Crusts (please note this does contain chickpea flour)

1 1/3 cup gluten free flour

1 tsp xanthan gum

1/2 cup Earth Balance butter

1 egg (beaten and mixed with 1 tsp of water)

1/2 cup brown sugar

1/4 cup white sugar

1 tsp cinnamon

1/2 tsp ginger

1/4 tsp nutmeg

1/2 tsp salt

2 large eggs

1 can pumpkin purée

1 tsp vanilla extract

1 cup unsweetened almond milk

1. Mix flour, xanthan gum and salt in a bowl

2. Crumble in butter

3. Add in egg/water mixture and mix dough

4. Chill dough in fridge for 20-30 minutes

5. Roll out pastry dough to .5-1cm thickness and place it in pie dish

6. Preheat oven to 400°

7. Combine brown sugar, white sugar, cinnamon, ginger, nutmeg and salt in a bowl

8. In a separate large bowl, beat your eggs together and add in your sugar mixture

9. Add in pumpkin purée, almond milk and vanilla

10. Mix until smooth and pour filling into pie dish. Bake for 15 minutes at 400° then another 50-60 minutes at 350°

11. Allow to cool completely before serving

I hope you can enjoy some of these twists on holiday favorites this Thanksgiving. Maybe your family can start a new tradition with one of dishes. If not, I hope you can still enjoy a day full of gratitude and nourishment (no matter how you get it). I look forward to sitting at the table this year with a small plate of mac and cheese with my tube feeds running. Happy Thanksgiving!

Must Haves for Tubies (revisited)

When I first became feeding tube dependent, I was totally lost. My doctor put the tube in, wrote me a script for formula and sent me on my way. With no guidance on how to care for my tube and what I might need, I turned to other tubies. Through them I’ve learned a vast amount of knowledge about different products and tips to help make having a feeding tube easier. But now that I’ve had a feeding tube for 4 years, I’ve developed my own preferences for certain brands and I’ve figured out what I use on a daily basis versus what I don’t tend to reach for anymore. Here’s a revised list of my must-haves for tubies:

•tubie pads – Soft, absorbent, cute and unique are my criteria for a great tubie pad. I’ve tried almost every brand out there. While some check a few boxes, only a couple check them all! – try my favorite tubie pads by Turkey Tot Customs and TubieContinued.

•port covers – I didn’t begin to use port connection covers until I got a button tube and realized the connector of the feed line and the extension to my feeding tube didn’t exactly stay in place all the time. After many spills and disconnections, I now swear by them! – try my favorite port connection covers (made by me!) here. Turkey Tot Customs and TubieContinued sells awesome ones as well.

•tubie clips – I pulled my feed line too many times to count. So many times, in fact, that these clips quickly became my favorite invention! I began making them for myself and fellow tubies. I love matching these practical accessories to my tubie pads and port covers – try my favorite tubie clips (made by me!) at Crafting For A Cure Co.

•split gauze – Split gauze is super useful for the days my stoma is extra leaky or when I need to use a thick barrier cream that would stain tubie pads. – split gauze should be provided by your home health supply company but you can get more here on Amazon.

•barrier cream or powder – I prefer powders over creams because they’re less messy and pair with a tubie pad but sometimes a cream is needed to help irritated skin around the stoma. – try a few of my favorites: Stomahesive, Aquaphor and Calmoseptine.

•no rinse stoma cleaning spray- This product is truly a game changer. I used to clean my stoma with bar soap and warm water twice a day in the bathroom but now I can clean it anywhere with a piece of split gauze and this spray. It cleanses and also takes away odor. – try my favorite stoma cleanser here.

•medipore tape – Tape can be so harsh on the skin. The best tape I’ve found is medipore tape. You don’t even need scissors to cut it. It’s perforated, holds well, and removes gently. – medipore tape should be available from your home health supply company but you can get more here.

•wedge pillow or incline bed – I now sleep in an adjustable bed but before that, I used a wedge pillow for years. I still use that same wedge pillow for travel. The wedge pillow is great for feeding at night. – try my favorite wedge pillow here.

•feeding backpack – I personally don’t mind the plain black backpack given to me by home health, but you could always DIY a backpack or buy a converted one online. Using a feed bag allows you to feed on the go and also be more mobile in your own home. – a feed backpack should be provided to you through your home health supply company but you can get a fun one at Taylor Hart Designs.

•extra syringes (if you take a lot of meds via tube) – If you’re like me and take dozens of pills a day, the small allotment of syringes that home health gives you isn’t enough to get you through the month. I dissolve my pills right in the syringe and put the cap back on until it’s time to take the medication. – 60mL syringes should be provided by your home health supply company but you can get more here.

•tegaderm – If your tube is extra leaky and gets your clothes wet or if you’re worried about keeping your stoma dry in stagnant water, Tegaderm is a dressing that keeps leakage in and water out. It’s a great solution for both problems. – try tegaderm waterproof dressing here.

•emergency kit (extra button if available/for straight G or J tubes, syringe, gauze, extension, tape, extra tubie pad, hand sanitizer in a medical bag) – I take an emergency bag with all the extra supplies I may need anywhere I go. You never know when you may need something regarding your tube. Being unprepared is the worst. – try my favorite bag for emergency supplies on the go here.

•granulotion – Going to the doctor to get your granulation tissue burnt off with silver nitrate is inconvenient and painful. A lot of people use a mixture of alum spice and barrier cream to get it to go away at home. Granulotion is a product made specifically for getting rid of granulation tissue in a gentle manner. It’s a great product and a little goes a long way. – try my favorite solution to granulation tissue here.

•cream or powder for yeast infections – Yeast infections can happen around the stoma site. I always keep a powder for athlete’s foot on hand to help with that. It usually clears it up in a few days and I avoid a trip to the doctor and a costly prescription. (Please consult your doctor before trying this) – try my favorite OTC powder used for athlete’s foot here.

•hand sanitizer – Before I do anything regarding my tube, I always sanitize my hands. Hand sanitizer is also helpful for on the go cleaning. – try my favorite rinse free hand cleanser here.

My Top 5 Personal Policies

1. My health comes first- even if that means inconveniencing others.

The most important thing is my health. Neglecting to take care of my body and mind in order to take care of someone else is unhealthy. I should never feel guilty about making sure my health is my top priority. If that means asking for assistance or reminding others of my limitations, I’ll do so.

2. Instead of saying “sorry” I will say “thank you”.

There is a time and place for apologies. But there is no reason to be sorry for simple things like making someone wait a few extra minutes. Instead of saying, “I’m so sorry I’m late!” I’ll say, “thank you for your patience!”

3. I owe people respect and dignity but not my time.

Everybody being should be treated with respect and dignity, but not everyone deserves my time. If someone is bringing negativity or hatred into my life, I don’t owe them an explanation or conversation. I can- and will -simply withdrawal from the situation for my own wellbeing.

4. I won’t hold myself to a strict timeline. It will get done when it gets done.

The laundry can wait an extra day if I’m too tired to get to it today. It will still be there tomorrow. There is no need to beat myself up over not completing things I think I *need* to be doing right away.

5. Saying ‘no’ is okay and I don’t owe anyone an explanation.

I don’t need to say ‘yes’ out of guilt or fear. I can say no and let that be that. Not every decision I make needs to be justified in order to make someone else feel better.

 

Personal policies are a way of setting boundaries as form of self-love. Sometimes it’s easy to feel unsure on how to say no or not engage in things when you feel guilty about doing so. Personal policies ensure that you’re putting yourself first and gives you the confidence to stand behind the things you believe strongly about. This helps eliminate unnecessary anxiety and stress that bogs us down in our day-to-day life. So stop wasting energy on things you genuinely do not care about or things that make you miserable.

Tips And Tricks For Tubies On-The-Go

Any tubie can tell you tube feeds require a Mary Poppins bag of supplies. From formula to pumps, it’s never as simple as pouring your feeds in the bag and being ready to go. It’s a production just to get tube feeds set up for home, but feeding on the go seems like it is in a league of its own! For awhile, I was afraid to leave the house while I was feeding. I was convinced there was no simple way to run my feeds in public. There are so many things that can go awry. But over the years, I’ve learned helpful tips and tricks to make feeding on the go super easy!

First, you’ll need to make sure you have the right supplies. Besides the obvious of setting up the formula in the feed bag and primed in the pump, here are some items that are essential for tubie life on the go:

The Essential Supplies

1. Feed Backpack
   

   Your home health company should supply you with the standard black bag to use. It’s simple, sleek, and designed specifically to keep your bag and pump safe.

   But if you want a more personalized or fun option, you can order a customized backpack! These backpacks or purses are converted especially to hold all the necessary equipment for your tube feeds. They come in all different sizes, colors, and patterns.

   If you’re looking for a good quality converted backpack, check out Taylor Hart Designs here.
   

2. Carry-All Bag
   

   You’ll need something to keep your extra supplies in.

   Feeding in public can come with all sorts of issues like your tube clogging or your stoma leaking. Be prepared for these emergency situations by having a special bag handy (bonus if it fits into your feed backpack!) stocked with all the necessary supplies.

   Personally, I recommend carrying a syringe, tube extension (if needed), and an extra tubie pad or gauze packet.

   Hand sanitizer and tissues are great to throw in the bag as well.

   You can use any zipper carry bag you have already or you can pick up one that is made specifically for tubies by a tubie here.
   

3. Port Cover
   

   Sometimes the tube and feed line connection isn’t the strongest.

   Even when I feed at night time I wear a port connection cover to make sure I’m not “feeding the bed”. This is extra important if you’re out and about!

   The port cover wraps around the opening of your tube and the connecting portion of the feed line to make sure they stay together. This will prevent spills from ruining your clothes.

   Getting a thinner and fashionable port cover is perfect for on the go.

   If you don’t already have a favorite, check out Little Len Creations here.
   

4. Tubie Clips
   

   Lastly, but certainly not least you’ll want to consider tubie clips. These tiny devices are multi purposed and I’d recommend getting two.

   One clip can be placed inside your feed backpack to keep your feed line neatly tethered in your bag so no kinks or tangles become an issue. The second clip can be placed on your clothing or on the outside of the backpack to keep your feed line close to your body to avoid getting it pulled or caught on anything.

   You can check out fun and fashionable tubie clips here.

 

Now that you have the right supplies, here are some useful tricks I’ve learned over the years:

3 Tubie Tricks Learned From Pain Experiences

1. Make sure your pump is fully charged!

   If it’s not, make sure to bring along the charger. Nothing is worse than being in the middle of a feed and having your pump die.

   Ideally, before you leave the house your pump should be charged all the way so you don’t have to be tied down next to an outlet, but if that’s not possible or you’ll be out longer than the pump’s battery lasts, bring the charger!

2. Keep a lukewarm water bottle handy in case you need to flush or unhook.

   Anywhere you go you can probably find access to water, but a clean and safe way is to insert your syringe straight into the bottle. That way you know the water temperature is okay and the container holding the water isn’t dirty. Don’t wait to flush because you don’t have water available! This is the most certain way to end up with a clogged tube and we all know how miserable that is.

3. Wear a camisole to keep your tubing tight to your body so it doesn’t move.

   I don’t know about you, but there are few things worse than granulation tissue or an irritated stoma. I always make sure to wear a cami to help secure my tube down when I know I’ll be moving a lot.

   It also keeps your feeding tube flat so that it’s less noticeable through your clothing (not that you should be ashamed of your life saving tube! I just know some people aren’t comfortable with stares and questions from strangers so this may be helpful if you’re one of those folks).

I hope these tips and tricks for a tubie on the go are useful for you. Let me know which must-have item on the list was the most helpful for you and which tips you tried! Have your own tips and tricks to add? Leave a comment below!

Crafting For A Cure Co

As I headed home from my GJ feeding tube placement surgery this past November, I remember thinking, “wow, you’d think since I had a feeding tube a few years ago I wouldn’t feel so lost!”. But becoming a tubie is so much more than learning to adjust to the tube protruding from your abdomen. It’s figuring out how to set up feeds, learning how to clean and care for your stoma, and compiling tips and tricks from veteran tubies.

One thing I did remember was feeling better about being tube fed when I was able to make it less medical and more a part of me. My first go as a tubie was in 2014 and there wasn’t much available at the time besides tubie pads. I had a ton…one in every color and pattern. So before I even got my second surgery in 2017 to place a new stoma and tube, I ordered a set of tubie pads from an Etsy shop.

While browsing Etsy, I came across new inventions that looked super promising in helping make tubie life a lot easier. The two products that stuck out the most were port connection covers (to help prevent the tube and feed line from detaching in the middle of a feed) and tubie clips (to help prevent the feed line from getting caught and snagged, painfully pulling on the feeding tube).

I was looking for a new hobby since I’m mostly housebound and sewing always intrigued me. I figured tubie clips would be the perfect place to start! I bought myself a machine and taught myself how to sew. I initially intended on only making a few clips and port connection covers for myself, but I wanted to keep making more. I decided a perfect way for me to enjoy both my hobby and work again would be to open up a new Etsy store.

I decided to create Crafting For A Cure Co. so I could share my creations with others while also giving back. For every accessory that is a sold, a portion of the sale goes directly to the Newbie Tubies project which sends care packages to children and adults alike who are getting feeding tubes for the first time.

Right now, I currently only have tubie clips listed for sale but I can’t wait to add more including: port connection covers, tubie pads, chapstick holders, and other fun accessories designed with chronically ill warriors in mind!

Visit my store here.

 

I Had An Eating Disorder

I had an eating disorder.

Those are really words I never expected to say. Only a few people who are close to me know and many who are close to me will likely find out here and now. But I think it’s something that’s important to talk about.

Beginners Guide to HR620 And How It Impacts Disabled Individuals

You probably haven’t heard about the new proposed law, HR620. It’s barely gotten any media coverage which is frightening and disheartening, as it will disenfranchise so many Americans from their civil rights. I’ve compiled the basics of what you need to know about HR620.