Many of you know that I live with 2 rare conditions: Hereditary angioedema and Mast cell disease. They aren’t pretty and they aren’t flattering. But they are real.
I haven’t wanted to take or show many pictures of myself because of how different I look. I don’t recognize myself and sometimes I feel embarrassed by my appearance. I was afraid of being judged by others the way I have been judging myself.
But since today is Rare Disease Day and it’s about spreading awareness, I am sharing some unpretty, unflattering, but real pictures of me living with these conditions.
A big thank you to all of my readers for helping me reach this milestone! When I started my blog, I wasn’t sure who would be interested in reading about the brutally honest parts of my life. I am grateful for each and every one of you who read, like, comment, or follow my blog!
We often make challenging times so much harder by expecting a lot from ourselves, pushing ourselves, and beating ourselves up when we fall short of meeting our own or others’ expectations. We expect ourselves to be happy, productive, confident, or there for other people. We expect ourselves to always be at the top of our game even if we put ourselves at the bottom of our priority list.
But we can’t possibly be all of these things all of the time because we’re not perfect, we’re human. And being human means there are times we are messy, inconsistent, and unreasonable. Some days I have my shit together and other days I’m glued to the couch in my pajamas covered with nacho cheese Doritos dust.
Many problems we face in life are tied to expectations of ourselves, of others, of situations, and of the world. We may expect ourselves to be perfect, successful, and to feel happy with our lives. We may expect others to think and act like we do. We may expect life to always go as planned and the world to be uncompromisingly fair.
Holding onto expectations can cteate a lot of negative consequences. It can eat us up, from the inside out. It can lead us to feel frustrated, angry, and resentful. We may blame others and ourselves for the way things are. Or perhaps we feel so hurt that we retreat into a shell in order to try to protect ourselves. We can become indifferent, uninspired, and unhappy. To avoid these festering emotions we have to look for ways to let go of our unreasonably high expectations. Letting go of anything can be hard. We grow attached to objects, habits, people, and behaviors. But it can be possible if we practice self-awareness, work at letting go, and have patience with ourselves when things get tough.
Over the years, my expectations have created a lot of stress. I recognize that I have the same expectations of others as I have of myself. This often leads to a lot of frustration on my part. I will constantly question, “If I can do this, why can’t you?” It could be a coworker not working as quickly or efficiently as me. It could be a driver not giving me “a wave” after I made room for them to merge in front of me. It could even be people not flushing their nasty dook in a public toilet.
I have learned that not everyone thinks and acts in the same way I do. People have different tendencies which allows them to meet internal and external expectations differently. Although why everyone can’t flush the damn toilet after dropping a deuce is beyond me. Anyhoodles, emotions don’t always make perfect sense, so I’m trying to be mindful of when my expectations of others are unreasonable.
Experiences like these, and how I react to them, have made me take a look inward. Why did I feel the way I did? Is it all ego, or is there a deeper issue? If there is something deeper, what can I do to address it instead of stewing in my feelings? What good would it do for my relationships if I voiced my frustrations? Can I do better?
We all have our strengths and we all have things we need to work on. Without beating ourselves up, we need to ask some tough questions of ourselves at times. If we want to avoid negative reactions in the future and get better at handling expectations and emotions, we also need to have an understanding of them.
I’ve realized my ego is often at play in scenarios where my expectations aren’t met. Sometimes I feel slighted because I can take things personally. But often, when people fail to meet my expectations, it has little to do with me and everything to do with their own circumstances. I shouldn’t vilify them for not being who I want or expect them to be. We are all a little weird and wonderful in our own way.
Expectations are a natural part of life. Not all are necessarily negative, but they often need balancing. If our expectations are destructive, we must learn to let them go. This doesn’t happen overnight. It will take some time to instill new habits.
Letting go requires taking a brutally honest look inward and making some tough choices. It also involves facing some of our biggest fears and perceptions. We may realize that we need to stop looking to other people for validation and interpreting every perceived slight as proof of our own unworthiness.
Sometimes our unmet expectations indicate something else that we need to let go of. This could be relationships that are toxic or abusive or a career that is unfulfilling. Some people and things just aren’t meant for us, no matter how much we wish they were. Some jobs and situations won’t work out no matter how much we hoped they would.
Life is not a straight line. It’s full of twists and turns and everyone gets turned around sometimes. Learning to let go of our expectations is hard, but it’s also necessary to maintain healthy relationships, our peace, and our sanity in order to become the best version of ourselves.
I am my harshest critic. I’ve held myself to ridiculous standards, pushed myself to be and do more than what’s feasible, and beat myself up over minor mistakes. We judge ourselves while navigating an emotional landmine, all in an attempt to avoid feeling shitty or wrong. So why do we judge ourselves?
1. We have an idea in our heads of who and where we should be in life.
In a world with impossible definitions of success and constant exposure to everyone else’s accomplishments, it’s easy to convince yourself you’re failing or falling behind. You might believe you need to be the best in your career field. Or you feel pressure to be married with 2 kids by a certain age. Perhaps you thought you would be finished with school or run your first marathon by now. Yet we supply an endless feed of social media posts to try and prove we’re living “our best life.” The truth is there is no right time frame for these events. Happiness in life isn’t dependent on achievement, status, or social media posts.
2. We tend to base our self-worth on our successes and failures.
We think we have to prove our value through achievements and worry that our mistakes will define us. I grew up seeking approval and praise when I succeeded. As a child I desperately wanted my parents to recognize when I did something right or good. At the same time I felt ashamed if I fell short of my own or other people’s expectations of me. I thought that if I failed or made a mistake, it was because I couldn’t do anything right.
This thought process creates a cycle that can only be broken when we learn to separate our actions from our identity. It’s a practice, not a one-time shift in thinking. We need to recognize that sometimes people make bad choices or have bad moments, but that doesn’t necessarily make them bad people. Good people still make mistakes because we’re human beings and no one is perfect. We are deserving of understanding, compassion, respect, and empathy.
3. We think we’re not good enough.
Maybe you developed this belief because it seemed nothing you did growing up was right. Perhaps your parents were hard to please or they constantly compared you to someone else. I know many people who have suffered from the emotionally abusive question of “Why can’t you be more like so and so?” Maybe a friend, colleague, or partner directly told you that you’re not good enough.
Some toxic people are so obvious that they can be spotted a mile away. Others are a bit more subtle. But all are destructive. Emotional abuse has become somewhat normalized, because it’s a pattern people repeat based on what they experienced growing up. You don’t have to repeat the patterns of emotional abuse that were shown to you.
4. We have bought into societal stigmas.
We live in a judgmental world and we tend to buy into societal stigmas. As a result, we judge ourselves harshly. Questioning these stigmas can feel like swimming against a current. We need to learn to give less of a flying fuck about what other people think of us and in general.
If you always tell yourself you’re a failure, then you allow your insecurities to hold you back from doing new or challenging things. You get caught up in a vicious cycle of your beliefs influencing your behavior, which then reinforces your beliefs. For example: When I was younger, I feared people wouldn’t like me, so I put up walls and made it hard to get to know me. This felt safe to me because if people didn’t know me, then they couldn’t hurt me. But this meant that I didn’t give anyone a chance to get to know and like me.
Overcoming self-judgment is hard and it’s not something we can do overnight. It may take years to recognize and change our beliefs and patterns. It might even be a process of two steps forward and one step back. But we can remind ourselves that we are enough and that we are doing the best we can.
I’m back for another segment of rambling buffoonery so try to curb your enthusiasm. 😁
Who decided that it would be a good idea to sell an Oyster po boy sandwich at a gas station? Yeah that’s what I want. Some gasoline with my *cough* oysters. This sparked a conversation between G and I. What is the weirdest food that could be sold at a gas station? Is there any food stranger than an oyster sandwich at a gas station? I’m gonna go out on a limb and vote for Spaghetti and meatballs or Chipped beef and gravy. Although these are common American foods, I would find it extremely odd for them to be sold at a gas station. How would you manage to eat either of these while driving without being a complete shit pig? At least the po boy is a sandwich. Not that I am defending a gas station oyster sandwich. Cuz I ain’t. But I thought gas station food is about quickness and portability while driving or on the go. So what would you consider to be weird gas station food?
What is with SUVs changing shape so often? Especially the smaller ones like the Honda CRV, Toyota Rav 4, Nissan Rogue, and the Hyundai Santa Fe. I feel like every model year (or nearly so) has a different look to it. Now the Jeep Grand Cherokee hasn’t really changed shape since my childhood. Damn that’s been well over 20 years. The Ford Explorer’s shape didn’t really change until 2011. The Toyota 4runner hasn’t really changed shape either. I also wonder why I don’t see as many Volvos on the road. I feel like Volvos were hot shit about 15 years ago. But not so much now.
It has been over a decade since I last bought bath towels. Hell it might have even been when we moved into our house over 14 years ago. I noticed recently that several of our towels were fraying and ripping, and to be honest, some were a bit funky. When G commented that maybe it was time to buy some new towels I bit the bullet and bought some nice quality plush quick drying towels. These towels. These towels G. OMG! These towels! I put them on our towel warmer to use after the shower and forget about it! I’m drying my ass in warm velvety softness. What raggedy shit had we been using before?
I got a hanckering for a KFC chicken little sandwich. I remember eating these as a kid. A chicken patty with two pickles and mayo on a little buttery bun. It only cost $0.39! Perfect little chicken sandwich. As a kid I wondered if the sandwich was named after the story of Chicken Little and if the sky would fall after eating that chicken. Thankfully it didn’t!
Learning to manage my high blood sugars has taken a lot effort and getting used to. I love chocolate and have always had a sweet tooth. To my surprise there are several sugar free cookie options in the grocery stores. So I figured I would try them out. G and I both really like the Voortman sugar free orange creme wafers. They are da bomb.com. Since I love chocolate so much, I figured I would also try the Voortman Sugar free chocolate wafers. I never thought I would be revolted by chocolate. They are dick. No worse than that. They’re pig shit. Don’t try these at home kids.
Thank you so much Amethyst from love.inspire.learn for nominating me for the Sunshine Blogger Award! It is truly humbling and an honor to be recognized by other bloggers. 😊Amethyst is an aspiring artist and graphic designer with a passion for reading, learning, and writing, as well as inspiring others. Please follow this amazing blogger and artist here.
1. Thank the blogger(s) who nominated you in a blog post and link back to their blog.
2. Answer the 11 questions sent by the person who nominated you.
3. Nominate up to 11 new blogs to receive the award and write them 11 new questions.
4. List the rules and display the Sunshine Blogger Award logo in your post and/or on your blog.
Questions from Amethyst:
1. Who inspires you and why? I have been inspired by my grandmother since I was a child. Throughout my life I have watched her love her family unconditionally, go out of her way to help those in the community, and suffer the terrible tragedy of her oldest son passing away on Mother’s day. When things went wrong she didn’t complain. Instead she found ways to handle them with a level of grace and strength that is truly admirable.
2. What does your morning routine look like? I wake up around 7am, pee, do my breathing treatments, eat breakfast, take my morning meds, clean myself up, and throw on some clothes. Usually by this time the cats have had their breakfast too so I get a few giggles in as I watch them zoom around upstairs while I either read or throw in laundry.
3. What is your favorite book and why? “People I want to punch in the throat” by Jen Mann. This book just makes me laugh so hard my cheeks hurt. I think all of us have met certain people and asked ourselves “WTF is wrong with you?” These ninnies infuriate you so much you just wish you could punch them (whether you want to openly admit that or not.) Jen Mann’s writing style is very informal and she drops F bombs throughout the book which adds a spiciness that I personally enjoy. 😁
4. What is your dream job? I don’t really have a dream job. I can’t work anymore because of my medical conditions so I don’t really think about “dream jobs” anymore. But I do hope and dream about other things like being able to travel again, staying out of the hospital, and dressing up to go out to eat at our favorite restaurants. 😊
5. What do you want to learn this year? I would like to become fluent in French this year. I learned quite a bit of French in 2020 and can read it pretty well but I haven’t practiced speaking it enough. I would also like to start learning Russian this year.
6. What is your writing routine like? I typically write over the weekend and post every Sunday evening. If I have several different ideas hit me at once, I will write a few drafts and save the editing for the weekend.
7. Are you a lark, owl or hummingbird? I don’t give a hoot about this question so I will choose owl.
8. If you had to rename yourself, what would it be and why? I wouldn’t voluntarily choose to change my name because it’s part of what makes me…well…me. But say I HAD to change it for life or death reasons or to get a lifetime supply of free chicken nuggets, fries, and milkshakes. Or I needed a fake passport and a bug out bag. Then I would change it to Savina. Yes that’s what I named our cat. But the name Savina in Russian has a meaning of providing comfort. And I like that.
9. If you could live anywhere in the world where would you go? It’s a toss up between Norway and Italy. Norway is so clean and friendly but it is cold and expensive. G and I just loved our trip to Norway-it was easy to see why people loved living there. Italy is on my list because of its proximity to traveling to other European countries, its weather and cost of living are similar to where I currently live, and the food is awesome. Good food is a priority for me! 😄 I would either want to live in the Naples area or nothern Italy around Genoa.
10. What do you want to be remembered for? For being me. I don’t pretend to be anyone else.
11. What is your happiest memory? Traveling with G. My two favorite trips have been to Norway and Costa Rica. Both are beautiful countries with friendly people and lots of things to do. Cruising the Norwegian fjords and kayaking in the Gerainger fjord were very memorable experiences. Staying in a villa in the Costa Rican rainforest with a view of the Arenal Volcano was relaxing and unforgettable. Zip lining through the rain forest was so much fun and something I will never forget!
I think every blogger spreads a little sunshine! So if you want to answer the same questions above and spread a little more sunshine across the blogging community, I would love to read your answers and learn more about you. 😀🌻
I was surprised and honored to be nominated by Helen from crispy confessions for the Outstanding Blogger Award. 🤗 It is such a huge compliment for a fellow blogger to like my posts! 😀 If you don’t already have the pleasure of following crispyconfessions, she is a lifestyle blogger who writes about books, parenting, multilingualism, and has a strong social media presence on Instagram and Twitter. You can follow her blog here.
1. Provide a link to the creator’s original award post.
2. Answer the questions provided.
3. Create 7 unique questions.
4. Nominate up to 10 bloggers.
5. Ensure that they are aware of their nomination.
6. Now let’s continue to support and cheer each other throughout 2021 for the Outstanding Blogger Award!
1. Tell us your 2021 goals for your blog. My goal is just to keep blogging and sharing my story for those who want to read it. I blog as a hobby so there’s no pressure on myself. I don’t set or have any expectations for likes or followers on my blog. I just go with the flow and have enjoyed the ride so far. If I don’t have fun blogging then what would be the point?
2. How do you plan on implementing your goals for your blog in 2021? By doing just what I have been doing. I write a new post weekly about whatever tickles my fancy and publish it every Sunday evening.
3. What inspires you to write your blogs? Usually whatever personal or medical events that have occurred recently or are weighing on my mind. Sometimes I am inspired by an article I have read on a topic that I can relate to.
4. Why did you begin your blog? I have been told most of my adult life that I should write a book or go on Oprah to share my life story. 😄 Apparently the events of my life have been quite fascinating to those who know me. After much encouragement from G and some of my friends, I started blogging as an outlet for sharing my personal and medical experiences. And Voila! Delicate and Brutal was born.
5. What have you learned about yourself in writing your blogs? I never viewed myself as having any artistic talent of any kind. I can’t paint or draw to save my life. I always saw myself as this methodical, detailed, logical chick. But I have discovered a creative side in my writing that I never knew existed. I’m digging this artsy fartsy part of me! 😁😎
6. What would you change about your blog? I wouldn’t currently change anything about my blog. I write in my own voice, at a consistent schedule that works for me, and people actually read my blog. What more could I want?
7. How do you feel about collaborating on your blog? I usually don’t commit to collaborating with others on my blog mostly because my health is so unpredictable. I don’t think it would be fair to have to back out of a working commitment with another blogger at the last minute as frequently as I get sick or end up in the hospital. Plus my blog is very specific to my medical and personal experiences so that’s not really a niche that is conducive to collaboration.
I am leaving the same 7 questions for my nominees. Here they are:
I also like to leave these award nominations open to any writer who wants to participate. I think every blogger is outstanding for sharing their story! So if you want to answer the same questions I answered above, I look forward to reading your answers and getting to know you more! 🙂
There are a lot of things causing anxiety these days. We live in a complex and stressful world full of uncertainty right now. Will the COVID-19 vaccines provide the immunity needed to help us? Will there be more senseless violence at the Presidential inauguration this week? Our teachers and students are stressed as they navigate the constant changes and challenges of online education. Our healthcare workers (both front line and behind the scenes) are pulled and stretched in every direction trying to help patients. Many people are struggling financially. We’re constantly plugged in to technology and yet are more disconnected from each other than ever before.
So how do we help ourselves ride the inevitable storms that come our way? How do we handle daily chaos without feeling overwhelmed? We all know that we should make our health and well-being a priority. But we seem to make excuses as to why we don’t take care of ourselves. So what’s the problem? Lack of money, lack of time, lack of resources, lack of awareness, lack of motivation. We may feel disheartened to “fix” our life because we think there are too many problems to tackle. But we don’t have to completely overhaul our lifestyle in one month, or even one year, to make a difference. We just have to take one step forward right now.
Practicing self-care provides stress management techniques to help us cope with life’s challenges. If you have been following my blog you know that I live with several chronic illnesses. Managing my medical conditions can be quite stressful, especially when I am hospitalized. I recently spent a week in the hospital over the new year due to a severe asthma flare. It sucked ass. None of the hospital doctors could reach my asthma doctor or anyone on her team for treatment recommendations. I had to call every time I needed to go to the bathroom because I was hooked up to the heart monitor and my bed alarm was turned on to prevent me from getting out of bed unattended. I had to call for my insulin with every meal. I had to call for the respiratory therapist even though I had breathing treatments scheduled at regular intervals. I was stressed out because I felt like I had lost my freedom and I thought I could do a better job managing my care at home.
On top of all that, the hospital team wanted to shove a camera down my throat to look at my vocal cords because my voice was intermittently hoarse. I have had this done a few times with my ear, nose, and throat doctor to monitor the size of a large polyp. It always causes swelling in my tongue and throat afterwards due to my hereditary angioedema which requires treatment. I refused to do this scope while I was in the hospital since I just had one done 3 weeks before and the hospital didn’t stock the medication needed to treat my hereditary angioedema. We already knew that my vocal cords don’t close all the way because they have become very thin as a result of all the prednisone I have been on. This gap in my vocal cords is why my voice is intermittently hoarse. SIX different doctors kept pushing me to consent to the scope. I felt bullied but I stood my ground. I was pissed that these doctors wouldn’t listen to me and understand that there was no benefit to shoving a camera down my throat when we already had an explanation for my hoarseness.
So what do I do to calm the fuck down when I feel like a hostage held in the hospital? How can I practice self-care while hospitalized where I have limited resources? I do deep breathing exercises, look at pictures and videos of my kitties on my phone, watch TV shows that make me laugh, and look up corny jokes online. Here’s my favorite joke right now: Is buttcheeks one word? Or should I spread them apart? 🤣😂🍑
Now that I am managing my health at home again, my self-care activities have expanded. I enjoy watching our cats run around the house like wildebeests, listening to my favorite music, pigging out on comfort food, tending to our plants and orchids, and taking long hot showers. There’s nothing more refreshing than washing the hospital stank off!
It’s not selfish to take care of yourself. Don’t put off self-care for later because later will never come. We have to make time now for what’s important and self-care should be a priority. It can help you transition from simply existing to living and experiencing everything this world has to offer. Which would you rather be doing?
We’ve all said something shitty to someone in the heat of the moment. And afterwards you may have instantly regretted it. Ok I will admit there have been times I didn’t regret it. There have been certain people I loved telling to fuck off. I spewed every hateful expletive I could muster together in one run on sentence. I didn’t regret it. I had no remorse over it. In fact, I found it oh so gratifying. I walked away with a shit eatin’ grin on my face like the Cheshire cat from Alice in Wonderland.
When we judge and criticize others we are usually driven by fear or our ego. But underneath the surface we all have feelings and emotions. This is why becoming more self-aware is so important. Just as when a pebble is thrown into water and causes ripples, our words and actions affect other people, who in turn affect those around them, and so on.
Our ego causes us to put up walls around ourselves. We become closed off to others and afraid to show who we truly are. We fear we will be judged or rejected. When we are open, we are vulnerable and risk being hurt by others. If we are aware that their hurtful words or actions in the moment are unconscious, then we can try to stop our impulsive reactions from taking over.
Hurtful actions and comments stay in our memories for years, so it’s imperative that we bring awareness to ourselves. Everything we do and say to people has an effect on them. Sometimes we know right away. Sometimes we may never know. Often we never realize the full extent of the damage. We need to stop hurting others just because we instinctively allow our ego to take over in a fleeting moment. We can’t take back those words or actions. We can only apologize and make an effort to do better in the future.
When you are personally attacked by someone, you can choose to diminish their comments or actions. You can become aware that they are in pain and that is why they’re behaving this way toward you. Our default response is to get defensive and angry. So you instantly react and shout back at the person for attacking you first. This only leads to escalating hurtful comments without actually resolving the problem. These words then stay with each person and they can carry them inside for a very long time.
It’s very easy to judge and criticize someone when we don’t know what they’re going through. The only way we can know what someone is going through is if they are open and honest with us. We can achieve that through less judgment and criticism so people don’t let fear keep them closed up and guarded.
We are not robots, we are human beings with feelings and emotions. Sometimes we unconsciously let our ego take over us. Don’t beat yourself up over it. We can’t control what we will feel in the moment but we can decide to acknowledge those feelings when they first arise. Judgment and criticism only separate us and prevent us from bonding and sharing with each other.
Next time you find yourself judging someone or criticizing them, stop and think. Become aware. Be conscious to your words and actions to yourself and to others. Be open and honest and expect the same in return. Be the change you want to see in the world.
2020 is now behind us and I think everyone is happy to celebrate that while looking forward to 2021 with hope. As fucked up as 2020 was for so many people, I appreciate the moments of beauty and joy from last year. So here are 20 delicate and brutal photos of my 2020 to share with all of you.
I love summertime! The colors are vibrant, the pools are refreshing, and the fruit is juicy. 😁🍑🍉 Plus our blooming hydrangeas are my favorite if you can’t tell! 😍🤗
Next up are our orchids. I love these as much as our hydrangeas! Growing them has taught me a lot of patience and to appreciate the beauty in things.
My health continued to be a roller coaster throughout 2020 with several hospitalizations for severe allergic reactions and asthma flares. My body has continued to change and swell from all the prednisone.
One of the highlights of 2020 for G and I was adopting 3 kitties from our local animal shelter. Tilly, Savina (AKA Veenie Beanie), and Poovey are frisky, curious, and sweet cats who bring us their toys, zoom around the house, and love to cuddle.
Who doesn’t love a nice fat Christmas tree? Is this the biggest thing you’ve ever seen?! 🎶 I like ’em round and big 🎶🎤
Well that’s a wrap! Au revoir 2020! Here’s to a healthier 2021 with just as much beauty, joy, juicy slurpable fruit, and kitty friskiness. 💕😀🍑😺