I originally posted this exciting Pots for Potsies update in June 2021 to social media, but I wanted to make sure I posted it on here, too. 🥳💙🎉 100 🎉💙🥳
We have officially painted and sent 100 flowerpots to 100 POTS patients! 😱 Pots for Potsies began in May 2019. It began as a dream—a random conversation in my kitchen that steered a school project into a lasting impact that has spread country-wide. 5 years ago, I felt so alone. I thought I was the only one who faced this isolating, invisible illness. Behind closed doors, beneath the comfort of my blankets, in the trenches of dysautonomia & depression, I was ready to give up. But I held on—to the love and promises of God, and by His grace, Pots for Potsies developed years later. I never thought I would be here celebrating this milestone of sending 100 flowerpots to 100 POTS warriors. That's 100 folks with 100 different stories, and 100 different dreams. 😊 We have sent so many flowerpots to such a variety of people. From a little girl in Georgia who loves to bake 👩🍳, a young boy in Michigan who loves Chevy Camaros 🚗, a teenager in Washington who aspires to be a veterinary technician 🐶, and many, many more. We've had mom's and dad's apply for their children, friends apply for friends, a boyfriend apply for his POTSie girlfriend, and even some people who have applied for themselves. I have been blessed to walk on this battlefield of dysautonomia with a flowerpot in hand, ready to help remind others that despite all of the pain, they must keep on keeping on. At times the battle is exhausting, terrifying, and painful. The trenches—dizzying. uncomfortable, and claustrophobic. But none of us are alone in this. Ever. We are a community of warriors, united by a mutual understanding of illness, and armed with an unwavering commitment to help others keep fighting. 💕 100 flowerpots to 100 POTS warriors in 33 states is a lot. But POTS affects millions in the Unites States alone, so we must continue! Spread the word about our mission, and help us send more love to more POTSies. Onward to 200! With love & hope, Shayla Rose 💙💙💙
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I'm excited to announce that after months of hard work, my latest book, "A Rose's Reflection: Poetry Collection" is out now! I first began writing poetry when I was a teenager, isolated by a chronic illness, in an effort to understand my emotions. They say that writing is how we understand ourselves; reading is how we understand others. Perhaps the beginning of my poetry journey began out of a desire to understand myself better, I suppose that writing has always felt like a process of self-discovery. In hindsight, my poems have evolved over time, likely an indication that I, too, have evolved. They first began as deep, emotional outlets, often about my most troublesome hurdles and burdens. As a teenager especially, this burden was the grip of an all-consuming, and inescapable chronic illness. Over time, my poetry has developed into more of a reflective state of discovery for the world outside of the walls of my home. Poems began forming out of a state of observation. As I witnessed the people, conversations, and experiences around me, I became a sponge—absorbing the emotions, and turning them into the most familiar form of art I knew—poetry. To this day, rhyming words and forming thought-provoking lines comes natural. In the shade of the night sky, my fingers work tirelessly, and sometimes can barely keep up with the poetic lines forming in my head. Life is a dance, and poetry is a lyrical semblance of it. It was only a matter of time before my poems accumulated, and began to outgrow my old binder. The thought of writing a poetry book was not new, in fact, it was a thought that had been in the background for many years. From my first public poetry reading in 2016, people became eager to hear more. Out of a place of emotional validation and support, many early supporters urged me to share more of my written works. Perhaps the most powerful experience, and one of the most influential was when someone had memorized and recited one of my poems back to me. Hearing the words sounded oddly familiar, and took on a new shape when spoken from another’s lips. In early 2021, a sudden loss prompted me to finally pursue publishing my poems, and in September of 2021, the book was completed and ready to share. “A Rose’s Reflection” is the home to the first part of my poetry collection. This book is where some of my deepest recorded poems reside. It’s a reflection of me, a reflection of who I am. The sad, happy, curious, faith-discovering, loving, grieving, reflecting and silly sides of me are all echoed on these pages. Poetry is the process of picking up the broken pieces, placing them back together in a new order, and through the transformation, witnessing a sense of understanding and new-found healing. It’s finding beauty in the broken, light in the darkness, and it’s a vital process, if you ask me. If you would like to read my poems for yourself, check out my new book, "A Rose’s Reflection". Signed copies are available, just be sure to indicate your desire for a signed copy at the time of purchase. If you read my book, please consider supporting my writing journey by leaving a book review over on Goodreads. (A Rose's Reflection: Poetry Collection by Shayla Rose (goodreads.com)) I think you guys will like this one. 😉 Keep on keeping on! --Shayla 💙💙💙 As the world opens up and the weather warms, many of us in the chronic illness community are unexpectedly finding ourselves in a flare. For me, the recipe of a flare tends to look something like this: A friend invites me out for the day, and in the same week my other friend comes over and chats for a while. Days later, I visit with a couple relatives, and perhaps we go on a long walk, or bike ride. I have an appointment that same week, as well as a group engagement I’ve committed to, and during my “down time”, I am busy trying to catch up on all the outdoor activities I’ve neglected. Like gardening, or tending to the lawn, or perhaps working on the latest big project I have taken on. My mind has so much energy, and I force my body to keep going. Before the week is out, I’m longing for one simple afternoon of rest. But that simple afternoon of rest is nowhere to be found—because I’ve overcommitted. It wasn't one of these tasks that were "too much", instead, it is the combination of them all together. But wait. Here’s the thing. For those of us who are dealing with chronic illness, we tend to forget something extremely important: CHRONIC ILLNESS IS A FULL TIME JOB. So much of our energy is already committed to taking care of our body, and managing our illness, that we simply cannot expect our body to be able to accomplish the same level of strenuous activity that normal people can. And that’s perfectly okay and completely acceptable. This is a friendly reminder to all of us (myself included!), that “doing your best” doesn’t have to result in an exacerbation of symptoms. As I write this today, I am laying in my recliner in pain. The entire right side of my core is aching—from my ribs to my hip—as is my neck and arms. Why? Because I pushed too far yesterday. I stubbornly overlooked my body’s limitations, and I worked too hard. What happened? I overbooked my energy, and instead of me deciding when to take a rest day, my body has decided for me. Ultimately, we do have a choice. We either pick a day to rest, or our body picks one for us. I don’t recommend allowing your body to pick one, because if your body is anything like mine—it has really poor planning skills and tends to act like a toddler given a chocolate chip cookie. It wants more and more, and before you know it your body has decided it wants every day to be a rest day. But how do you avoid getting to this pitiful point of being laid out in the recliner—in too much pain to even reach the clicker? Here’s some tips:
Maybe that means casually tidying up your house, watching a good movie, and treating yourself to an afternoon home manicure. Or, maybe your body needs a full day in bed. Whatever makes your body feel rejuvenated—do it. Do easy non-strenuous activities and plan to “give in” to your body for an entire day.
my past flare-ups could have been avoided if I’d only muttered the word no. Maybe your relative has asked you to help them complete a project, or a friend invited you to a really exhausting event. You already know that you’re close to being out of spoons, so instead of pushing yourself past the point of no return, simply say no. Practice the power of that small, two-letter word. Be polite though, maybe add a little heart after it to soften the blow. It’s hard for me to say no to activities—especially social ones. But I’m learning how important it is to manage my time and energy, especially during the busier seasons of life when I am already feeling that my energy is overbooked.
Sometimes life is busy. We all have things we want to do—or need to do. It’s easy to get overwhelmed, and for those of us who battle an illness everyday, it’s easy to feel like we aren’t doing enough. Learning to pace myself is something I struggle with a lot. I tend to get really excited about things, and I want to keep pushing until a project or task is complete. But the reality is, my body can’t be pushed very far. It doesn’t respond well to that… and I need to gently work with it, and find a healthy balance in order to accomplish the harmony I long for. Give yourself grace, my friends. Learning to manage an unpredictable illness is no easy feat. You are a warrior. I hope that you all find balance this season. How do you avoid overdoing it? Please let me know in the comments! Keep on keeping on. 💙💙💙 With love and hope, Shayla 3/18/2021 1 Comment What's Your Legacy?What's your legacy? At the end of your life, what do you hope people remember about you? I know this is a heavy question. But it's important, and it's been on my heart lately. After all, people won't remember you for your fancy Instagram posts, or the amazing way you did your eyeliner every day. No. They're going to remember how you lived--they're going to remember your kindness, your humor, your talents, and your passions. They're going to reflect on those little moments—those little memories tucked in the crevices of your existence. In addition, and perhaps most importantly, they're going to remember how you made them feel. So, what is it that you hope people remember about you? What do you want them to think about, chat about, and write about? I have been walking down the road of grief lately. After losing a close young friend--one with immeasurable talents and incredible passion, I have been left with a lot of reflection, and emotion sorting. I've lost a few young friends in recent years--but this one has hit differently. Our legacy is a reflection of our lives. It's a collection of the moments of our existence, a ripple effect that is carried upstream to others. And if you live your life well enough—like my friend did--your legacy is not just a faint ripple, it's a strong wave that touches not only those who knew you, but those who wish they had. In this journey of life there's so many people who brush our lives. We work alongside each other and our paths cross. We become friends with some, and acquaintances with others, but we simply never know how long someone will be in our lives, and when someone's time is up. It's as if we are all playing a game right now, and when we go to Heaven, we high-five the next person to allow them to play their turn. Then they come down to earth, and they're born, and they live until the process begins again. It's just so strange, isn't it? If I've learned anything in the past month, it's this: Life is too short to be little. (I read this quote in a book and I believe the origin of it is from Benjamin Disraeli) Do you have a goal you've been pushing aside? A dream you haven't made the time for? An idea you haven't had the courage to pursue? A conversation with someone that you keep avoiding? A grudge you need to let go of? Do it. The perfect time to live your life is now. Today is the perfect day to begin. Life is temporary, but love--and our legacy--is eternal. We are all here for a purpose. Our hearts are all beating—like a chorus from the angels. Our lungs breathe in the hope and joy given to us by our Heavenly Father. Let's not waste a beat, or a breath. Live courageously. Live kindly. Live simply. Live unapologetically. Live with love. As for me, I hope my legacy is one of hope. I pray that when my time comes, people look at me as the gal who loved Jesus with all of her heart, wasn't afraid to laugh at the little things, and lived life to the fullest. The girl who cheered on her friends, sowed hope, blazed trails, and despite it all, kept on keeping on. What's yours? Let me know in the comments. With love and hope, Shayla 💙💙💙 P.S. I love this song "Legacy" by Nichole Nordeman. It's so beautiful. I linked it below for you to enjoy. 💕 In life, there is so much to learn—we are on a constant journey of learning new things, meeting new faces, and discovering the simple joys between the big moments.
But there is one thing in life that can’t be taught—something intangible, but incredibly valuable--the art of helping others. Recently, I learned about a local girl who has perfected the art of helping others, and her name is Haley Cuthbert. She is a trailblazer in the world of Autism and a compassionate big sister who has voiced the importance of inclusion and acceptance for those on the Autism spectrum. She is driven by a love for her sister, and a desire to help positively change the small corners of the world around her. She is truly an inspiration. Haley is a senior in high school and is on a mission of helping students on the Autism spectrum through her school project called, “The Puzzle Piece Project”. When I first learned about Haley’s mission, I knew I wanted to help in any way I could, so together we collaborated to design the Autism Flowerpot (which is currently available to purchase in the shop for a limited time). A portion of the proceeds from all Autism Flowerpots sold, is being donated directly to Haley's mission. I recently did an interview with Haley, to help learn more about Autism and her mission. Our interview is detailed below. I encourage you to read it to learn more about this amazing girl, and her inspiring goals. My Interview with Haley: What are a couple things you wish more people understood about Autism, and those living with it? (Haley): Of course, I myself do not have Autism Spectrum Disorder and I only have my own perspectives from my family and work with the Autism community but I wish people would take more time to not see Autism as simply a disability. Yes, it does impair many social aspects and ability to learn but that does not define an Autistic person. Each person is unique, and they are not just their disability. I believe understanding that an Autistic person has the disability is essential because it allows for one to acknowledge their struggles as well as their triumphs-- not just a division of differences. I wish people would understand that patience and simply taking the time to understand could make a large impact in awareness and bring support for the Autism community. How would you describe Autism to someone who may not know much about it? (Haley): This is how I, myself, describe Autism (Although there are various descriptions because each child with Autism is unique): The Autism Spectrum cannot be characterized as a specific set of symptoms and behaviors. Each child that has Autism is unique due to the variance in behaviors, attitudes, and preferences. A child can be high functioning or low functioning, extremely talkative or nonverbal, a gifted child or someone who struggles in school, hypersensitive or hyposensitive, etc. Even with a combination of these behaviors listed above, it is quite possible that a child could change overtime. An Autistic child may struggle to develop friendships, and usually do not obtain the ability to understand the emotions of the people around them. Additionally, learning disabilities often coincide with this disorder. However, a universal struggle that all Autistic children share is the difficulty of interpreting the world around them. This offers the possibility that they will not respond appropriately in a social setting. It is a disorder that affects the brain function of an individual; therefore, sometimes offering no physical indication that a person has it. Explain more about how you got started with The Puzzle Piece Project, and who inspired you. (Haley): All my life I have wanted to promote a project to raise awareness for autism. The original inspiration began with my younger sister who was diagnosed at a young age. Both myself and her twin sister have watched her struggle in more ways than one, yet she has remained an inspiration. My sister taught me to learn acceptance at a young age and led me to take leadership in organizations such as Best Buddies where each day I was inspired by other kids with intellectual disabilities. My school has a course called Senior Project where 15 students are selected to create projects based on their own personal motivations and passions. I knew that I had to apply to take this course since it was the perfect opportunity to let my idea come to fruition. When I was accepted, The Puzzle Piece Project was created. Explain your mission with the Puzzle Piece Project, and what you hope to do with the money you raise. (Haley): The main mission of my project is to raise awareness for intellectual disabilities, like Autism, as well as bring support to this community. By educating my local community about intellectual disabilities, I hope to spread inclusion and acceptance. In addition, not only did I want to raise awareness for this community but I also wanted to find a way to help reduce anxiety and struggles in a school environment. Many children with Autism often have trouble focusing or reducing anxiety in school, which allows for distractions in learning. However, many people are unaware that students without an intellectual disability also experience these distractions. That's where my idea to purchase and donate sensory integration toys (fidget spinners, seat cushions, elastic bands for searing, weighted pillows, fidgets) to elementary schools originated. Not only will these tools be helpful to those with Autism, but also to all students that need some aid focusing. This will also help spread the message of inclusion and help all students. What lasting change do you hope to evoke in the community with your project? (Haley): I hope that by the end of my project, I can still spread the lasting message of inclusion, acceptance, and awareness. I hope that I can continue this project past my senior year and continue to spread these messages. In the future, I plan to become an inclusive elementary school teacher where my main goal, aside from educating students about math and science, is to teach them how to be kind-hearted and inclusive leaders. I hope that this will enable a lasting change in the future generations. In general, I hope that my project will be remembered around my hometown and will serve as a reminder to simply spread inclusion. I learned so much from this interview with Haley—and I hope you did as well. She has such an amazing sense of purpose at such a young age, and it’s so inspiring. To help support Haley and follow along on her mission, you can visit her website at: www.puzzlepieceprojecthc.weebly.com During the month of February (from February 5th—February 26th), we have a flowerpot available in our shop that we designed specifically for Haley’s cause. A portion of the proceeds from The Autism Flowerpot get donated directly to The Puzzle Piece Project. In the past 10 years of having an invisible, chronic illness, I have heard a lot of different things from people. I’ve been asked questions that imply that I am lazy. I have been in conversations where people use terms like, “when you get better." I have even been asked several times in my life if I am high—and the answer is: of course I am. I’m always high on life and God’s love. Aren’t we all? Recently, several conversations left me feeling low, and opened my eyes a bit on how some people view chronic illness. After picking myself back up again, I felt the desire to talk about these common misconceptions that some people tend to have towards those who are chronically ill. Disclaimer- Everyone who has a chronic illness is unique. This list is simply a compilation of my own thoughts and a reflection of my own personal experiences. Misconception #1: Those with chronic illness are lazy. This one is an interesting one that comes up a lot, and it couldn’t be further from the truth. Often times this isn’t said in a blunt, or straightforward way. Generally it’s implied. For instance, someone might say, “Did you do anything at all today?”, or, “Wow, so you’re still doing the same thing you were doing yesterday.” It could also come out as comments like, “When are you going to get a job?” or “If you only exercised a little, you’d be better.” Those who are chronically ill often cannot work the conventional 9-5 job, (an estimated 25% of those with POTS are too sick to work or go to school), however this does not mean that we are lazy. Imagine being in a body where your heart rate is in the triple digits every day. You cannot catch your breath. You black-out each time you stand. You are completely exhausted. But within your day you have a couple hours that you feel somewhat okay, so despite all your symptoms, you decide to do chores, homework or perhaps even go to work. This takes up so much of your already-limited energy reserves, but you push through anyway. This does not sound like a lazy person to me. The oxford dictionary gives this definition for the word Lazy: "Unwilling to work or use energy." Laziness is a mindset of un-motivation and an unwillingness to thrive. It’s an attitude of, “I don’t want to, so I won’t”. I have yet to meet a lazy chronic-illness warrior. If anything, those with chronic illness must work harder and possess more determination than the average. Misconception #2: Those with chronic illness are always seeking sympathy. Although it’s true that people who have a chronic illness often times talk about what plagues them, it does not mean that we are sympathy-seekers. We seek understanding, and empathy. We want you to understand how we feel so that we can better build relationships or receive the accommodations we need. We are not seeking pity, or sympathy. In fact—I despise sympathy. I don’t want people to ever feel bad for me. Do I want them to understand my symptoms? Heck yeah. Here’s an example: I walk into a new meeting at my church, and I have never met anyone in the group before. I realize quickly that I’m having a high-symptom day, and I decide to pull the leader of the group aside, to let them know that I may have to leave early due to my symptoms. I briefly explain my illness so that they understand how to better accommodate me, and after our conversation, I rejoin the group. This does not mean I am seeking sympathy from my church leader. I’m simply seeking understanding. Another example: I meet a new friend and decide to tell my friend about my illness. I don’t even intend to—it just comes up in our conversation. But I realize soon that my new friend is very active, and soon my friend invites me to go out with them for a long walk. I reply to them by saying that I am having a bad day with my POTS, so I can’t walk that far. Am I seeking sympathy from my friend? No, I am seeking understanding, in hopes that we can make plans to do something easier on my body or reschedule for another day when I’m feeling better. Misconception #3: Those with chronic illness are not positive people. Much like positivity, negativity is a mindset. I have met my share of negative Nelly’s—both healthy people and chronically ill people. I think there’s so much that can be said about this, but maybe an important question is: What do you consider to be negative? In my opinion, if someone says something, “I am very dizzy today” that does not come off as negative to me. It tells me that this person is vocalizing their symptoms, so others are aware. Perhaps they’re seeking extra help, or validation. But overcoming every conversation with your own personal ailments and disasters is negative. Don’t get me wrong here—talking about your illness is NOT negative. But broadcasting it through every conversation and overlooking other’s needs, can be. Sometimes when I think of negativity, I think of someone who dwells on the one bad thing that is going on. For example, while looking at a flourishing garden in mid-summer, the positive thinker would note all of the garden’s juicy vegetables and future potential, while the negative thinker would only see a lot of weeds and a lot of work. I think that we all have the power to chose between negativity and positivity every day. Do I have symptoms 24/7? Yep. Do I want to sit down and think about them all day? Nope. I focus on the things I can do. Period. Misconception #4: Those with chronic illness live in a world of constant waiting. Oh boy, here it comes. The one that really triggers me. It usually goes something like this: “Well, when you get better…” (insert important life goal or event here). I don’t live in a world where I am patiently waiting for my illness to miraculously leave in the middle of the night. I don’t twiddle my thumbs and tap my foot for that. My illness came out of nowhere, and as much as I pray and hope that it will leave at the snap of my fingers, I don’t wait for that. I don’t hinge plans or life goals on my distant-hope of getting better. Why? Because if I did, I would have wasted the past 10 years of my life doing just that—nothing but waiting. I don’t put my life on hold. I focus on what I can do, and I only wish others did the same. This has been something that I’ve found can easily complicate and strain relationships. I wish more people accepted that if I’m not waiting for the day for my illness to get better, then neither should they. Let’s just live our lives to the fullest! Misconception #5: Those with chronic illness are unreliable. This is one that I have personally struggled with a lot over the years. If I miss an important event, or have to leave a situation early, I often fall down the ladder of blame. I often blame myself… until the day when I realized something very important: I am not unreliable. My illness is. Most people with chronic illness deal with unpredictable symptoms. The reality is—many of us deal with FOMO, and hate to cancel plans. But sometimes if we are having a high-symptom day or have just been hit with heavy fatigue or a debilitating headache, we have no choice but to cancel. This does not mean that we don’t want to hang out with you, or that we simply don’t care. It’s actually quite the opposite, and it’s important that you continue to invite and include your chronic illness friend—even if they have cancelled before. Misconception #6: Those with chronic illness look sick all of the time. Nope—not true! In fact, many chronic illnesses are invisible. You can’t see every symptom that people face. A lot of times people will assume that if others look good on the outside, they must feel well on the inside. But I read a funny quote recently that summed it up perfectly. It simply said this: “I’m sick, not ugly.” As funny as it sounds, it’s so true! Even though we may be sick, we still take care of ourselves. If chronic illness warriors aren’t using a mobility aid, it’s often difficult to even spot them! I hope that this list helped you in some way. My hope is that it breaks down some stigmas that people have towards chronic illness. Have a misconception you’d like to add to the list? Leave a comment below! With love and hope, Shayla 💙💙💙 What day is it? What month? Does anyone even remember?! All I know is that it’s 2021 now. Thank God! It seems like for the past ten months, time has been a strange thing. The days are long, and often unproductive. This unstructured lifestyle coupled with the cold weather and long gray winter days, has many of us feeling stir crazy—and perhaps even depressed. But there is a way out of cabin fever— and I’m here to tell you some of the things I’ve learned throughout the years. In many ways those with chronic illness have had an advantage during this home-isolation time. Many in the chronic illness world have had to deal with staying home for long periods of time due to an illness flare, or recovery from surgeries. I mean, let’s face it— we were trained for this. We were zooming, watching Netflix, and baking bread before it was even cool. Here are some ways to stay sane and beat boredom during the winter months of this pandemic: Focus on your faith With many churches being closed, or being too risky to attend, it's easy to unintentionally slip away from your faith. But God is still there for you— and you don't have to go to a church or bible study to find Him. Consider creating your own routine of quiet time, journaling, or try a new devotional series. Something that was recommended to me by a friend is a "prayer box". Write your prayers down on paper and put them in a small box. This is very helpful and often results in my prayers being more thought-out and freeing. Setting aside time during the day to connect with the Lord is a crucial thing for Christians. Bake something sweet Baking is a not only fun, but eating your delicious baked goods offers comfort to your soul. Honestly, whenever I eat a warm brownie or chocolate chip cookie, I feel like my soul is being hugged. It’s hard to be sad when you are eating chocolate—just saying. Teach yourself a new skill Have you always wanted to learn how to yodel? Play an instrument? Learn a new language? Maybe you want to work on learning new things, but never had the time before. With YouTube, you have a wealth of teachers at your fingertips. Now is the perfect time to seize these opportunities. In the beginning of quarantine, I had it set in my mind that I was going to learn how to dance the Charleston. The upbeat, joyful, old-fashioned dance made me instantly happy to watch, and I really wanted to be able to replicate that. I had visions of the world opening up and me, literally dancing my way out of quarantine. Ten months later, I haven’t quite perfected my routine… but there’s still time. Pick up a new hobby, and give others your creations Hobbies are a great way to keep yourself entertained. Knitting, crocheting, and sewing are all easy and affordable hobbies that pretty much anyone can learn. Wood whittling, and wood burning is also fun. Painting, metal working, beading, jewelry making, and candle making, are just some examples of new hobbies you could try. There are so many step-by-step books out there to teach you what you need to know, and all of these hobbies will end with you having a physical item to share. Whether it’s a hand-knitted hat, a painted canvas, or a wooden spoon that you carved yourself, there’s a great level of satisfaction by the end of it. You could use your new hobby to make gifts for your friends and family, and help cheer them up during the pandemic, too. Make your indoor space exciting They say that pet birds get bored with their toys, and that every once in a while, it’s a good idea to introduce a new toy or rearrange their old ones to keep them mentally-stimulated. Although this may be a strange analogy, I feel like us humans also benefit from keeping our indoor space exciting and new. This of course, does not have to mean that we have to buy ourselves a new couch or kitchen set every three months, but rearranging or decorating your living space is always exciting. Maybe you want to paint your dark walls to a brighter shade? Or try your hand at chalk paint, and give your nightstand a face lift? It doesn't have to be expensive! Start a Home Aquarium, or get a pet bird Pets are great at enriching your life. Although dogs and cats are the most common furry companion, you don’t always have to commit to that type of animal if you don’t have the means to. Starting a small home aquarium is inexpensive, and very calming. Fish tanks are cheap to buy second-hand, and raising fish is really not that difficult. Fish tanks are a great way to add some peace and tranquility to your home. Another option—a louder option—is to get a pet bird. Parakeets are a great addition to the family. They are loving, not terribly loud compared to other birds, and are very easy to care for. They often form close bonds with their owners, and they also don’t live as long as parrots. So you won’t have to worry about willing your bird to your great, great grandchild. If you’re the reptile type, they are also good options and easy to care for. As are hamsters, guinea pigs, and other small animals. (Pictured to the left) My parakeet. He loves to sing and has been a great addition to my family. It's so nice to hear a bird chirping, even in the dead of winter. Think (and plan) ahead to warmer, and better times One of the best ways to beat cabin fever is to let yourself dream, and look ahead to the warmer weather. What would you like to do during the spring and summer? Do you have plans to start a garden for the first time? What will you grow? Draw a garden plan and buy your seeds. Want to raise chickens and get your own farm-fresh eggs? Do some research now and pick what breeds you want, and plan where you will put their coop. Power yourself up with Social Connections This time is especially difficult for extroverts— but even for introverts, it’s important to stay connected. Balance your time with socialization through video chat, or phone calls with your friends and family. A simple conversation with a loved one who lives outside of your household is often enough to reset your mind and help you out of your funk. You may not be able to hang out with your friends at the mall, or go out to eat at your favorite restaurant, but you still can find creative ways to nurture your friendships and your need for connection. Looking for some new friends? Don’t be afraid to join a local online group. Luckily, almost all groups and clubs are moving to online platforms. This online-shift has been wonderful for those of us who are in the chronic illness community, because we finally feel included for the first time. As an example, in the past, if someone who has an illness wanted to join their local book club that meets every Friday at 7pm, they may not be able to join due to their symptoms being worse at night time. Without another option, they would simply miss out. Now with the book club moving online, this person may be able to join and be apart of it for the first time. Get some fresh air, and exercise Don’t underestimate the power of being outside, immersed in mother nature. I always feel my best when I’m outside, freely roaming around and soaking in the beautiful world God has created. Need to clear your head? Go for a walk outside, or even a bike ride. Heck, even rollerblading is fun. If it’s snowy where you live, bundle up and go out there! Life is short. Walk through the winter wonderland, make a snow angel, and build a snowman. Channel your inner, child-like wonder. (Pictured to the left) A winter wonderland. I took this photo last month during our first winter storm of the season. No matter what time of year, it's always good to get outside and take in the fresh air. Try to stay on a routine, even if you are not working 9-5 anymore. Many people have lost their jobs during this time, and others are now working from home. Maybe you used to get up at 7 o'clock every morning to be at work by 9 o'clock. Now that your work schedule has changed, it’s easy to fall into the slide of sleeping in and lounging in your PJ’s all day. But I’ve found that if I spend the day in my PJ’s, and sleep in, I’m widely more unproductive. I often feel sluggish, and all I want to do is curl up in a blanket cocoon and watch TV. Be mindful of your routine and begin your day on the right foot. I’ve found it helpful to lay out my clothes ahead of time, so that as soon as I get up in the morning, I get dressed, brush my teeth and get ready for my day. Even if you are not leaving the house, and don’t plan to see anyone outside of your bubble, taking care of yourself and looking presentable is really important to your mental health. I’ve heard it said before that you should make your bed every morning. It’s a small token of self-love, really. There’s really nothing better than a perfectly made bed to crawl into after a long, cold, winter day. Believe me—you won’t regret it. Sometimes your house is your safe haven, and sometimes it’s your cage. I believe we have the power to shift our mindset, and learn to embrace our homes as a place of refuge. Our home should be our sanctuary—a safe place where we can truly be ourselves. Don’t look at it as though we are confined to our homes—as though this is a terrible thing. Look at it as though we are blessed to be home, in a warm place where the possibilities are endless. I sincerely hope that this helps you all stay sane—and helps you thrive—at home during this quarantine. If there's any other things you would have added to the list, please leave a comment below! I’d love to hear your tips! With love and hope, Shayla 💙💙💙 The two most common allergies for those with dysautonomia are Gluten and Dairy.
Unsurprisingly, I am allergic to both. I learned about my allergies a couple of years ago, and ever since identifying and avoiding my allergens, I have been able to eliminate (or at least reduce the severity of) certain symptoms; such as headaches, vomiting, persistent nausea, and fatigue. When I first considered going gluten free, it seemed like the diet change would be too challenging and downright joy-depleting. I can’t have my favorite crackers any more? No more wheat bread? Mom’s famous chocolate pie?! Just the thought was too much to bear. But, alas, I put on my big girl pants and I trudged forward. Months after being gluten free, my casein allergy was discovered, and I made further diet changes. Now that I’ve made these diet changes, I feel much better, and honestly—I don't feel like I'm missing out on anything. Here is a list of some of my favorite gluten free, dairy free alternatives: *Always read the labels on any new food items before trying them yourself, to ensure they really are dairy and gluten free.* (Click on the title of each food item to be redirected to the product website). Good Thins Rice Crackers, and Good Thins Corn Crackers.
Daiya Cheddar Cheese - Everyone loves a good pizza, and since most pizza places don’t offer dairy free alternatives, Daiya cheese has been my go-to when my family orders out. Despite it’s name, Daiya “cheese” is completely dairy free. I usually use it to make homemade pizza (on gluten free / dairy free bread), and my mom has also added it in place of cheese in her lasagna recipe. It comes in both shreds and slices, and Daiya offers a couple different flavors aside from just cheddar. It tastes good, too. Silk Almond Milk Yogurt Silk Almond Milk Yogurt is delicious, and it’s both dairy and gluten free. It has probiotics (which is great for those of us with stomach issues), and the consistency is the same as regular yogurt. Honestly, it’s so delicious I’m not sure I’d even notice the difference! It comes in a few different flavors. I've had the vanilla, strawberry, and peach before. There is also a Silk Soy Milk Yogurt variety. I've tried this yogurt, too, and it's also good. Bob’s Red Mill Brownie Mix Everyone loves a sweet treat occasionally. For me, Bob’s Red Mill mixes have been amazing. Not all of Bob’s Red Mill mixes are Gluten and Dairy Free, but the ones I’ve used are the brownie mix, chocolate cake mix, and cookie mix. (Some of the mixes will say to add butter—but I’ve found that adding vegetable oil of the same amount works just fine). Blue Diamond "Almond Breeze" Almond Milk -Almond milk has grown in popularity in recent years—even among those who don’t have a dairy allergy. In the past, I’ve tried a couple different types of milk alternatives, but almond milk remains my favorite. It has a great flavor (I prefer the unsweetened vanilla, because I find the sweetened to be a bit too sweet for me). I drink it straight, or add Hershey's chocolate syrup sometimes. I also use Almond Milk as a milk alternative in recipes. But to be honest, I'm still trying to figure out how they milk an almond… it's just so small. 🤷♀️ Applegate Farms Hot Dogs -Surprisingly, most popular hotdog brands (as well as many prepackaged meats), contain dairy ingredients. But Applegate Farms organic hot dogs are both casein and gluten free. I’ve tried two varieties--the beef and the turkey. Although not quite as delicious as my favorite ballpark hotdog I remember eating as a kid, these do taste good. Other products I’ve discovered that offer gluten free / dairy free alternatives: Tortilla flat bread has a gluten free version, which makes a great wrap and also a delicious base for a quick pizza. Quaker Oats has a Gluten free version of their quick oats oatmeal. I love eating oatmeal but have basically banned myself from eating it, because I struggle to tolerate "bloatmeal" from a stomach standpoint. Despite that, these oats are great heated up for oatmeal or added into a recipe. Cheerios are a great gluten free and dairy free cereal. Some varieties of Tostitos Chips are also gluten and dairy free. Surprising foods that sometimes contain dairy and/or gluten: Luncheon Meats Ham, and some varieties of Sausage and Bacon Soy Sauce Chocolate (including most chocolate candies). Spaghetti Sauce sometimes contains cheese or milk ingredients Sometimes I’m surprised to find that certain foods contain gluten and/or dairy. It’s always important to get in the habit of reading the ingredient label, and to be aware of all the different names for milk ingredients (because there’s a lot!). I hope that this list is helpful to you! As always, it's important to read the label on all new products that you buy to ensure for yourself that they are indeed gluten and dairy free. If you have anything to add to this guide, or have any questions relating to POTS and being dairy or gluten free, please drop a comment below. I’d love to hear what other gluten free / dairy free alternatives you’ve discovered! With love and hope, Shayla Rose 💙💙💙 I've always loved to write. English class was my favorite as a kid, and ever since my mid-teens I have used writing and poetry as a creative outlet.
Writing feels freeing and healing to me—as if the pen holds the power to release my burdens, and the paper catches them. Somehow, writing turns my heavy heart and muddled mind into something legible and beautiful. It's like taking a bunch of broken pieces and making an amazing new creation. It's an expression... a soft release of emotions. I often tell people that writing my book was healing to me. It was. For the first time in my life, I sealed my past within the two covers of a book—and I no longer felt that I had to carry it around with me. I'm lighter now, and it feels so good. There's much more to say about my love of writing, but I'll keep it brief for today since this is my first post. I'm excited about this blog, and all of the amazing stories that will be shared on here. Both my own stories, and the stories that others will share on here in the future. Keep on keeping on! 💙💙💙 —Shayla |
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