- A good support system can get you through anything.
- Be the mentor you wish you had/have
- Sometimes recipes don't turn out looking like their picture
- Asking for help and leaning on people is not a sign of weakness
- Only spend time and energy on people who value you
- It's okay to not be okay
- Being single is not a bad thing
- There is no right or wrong way to grieve
- Take risks that could cause a relapse and accept the consequences
- A 30 day heart monitor and a bad breakup are not compatible
- To never apologize for who you are
- Perfection is the enemy is production
- Reindeer antler decorations for your car are supposed to go on the back windows, not the front
- Our circumstances are not a part of us
- Buying used clothing is good for the environment
- Doctors aren't always right
- You can't help people who don't want to be helped
Well everyone, it is officially 2018! A new year means new beginnings, new opportunities, and more chances to live the life that we want. I will be honest and say that for me, 2017 had it's ups and downs. There were struggles and hardships that forced me to learn some difficult lessons but as I look forward into the new year I am thankful because those bumps in the road have made me a stronger person. Today I will be sharing seventeen of the lessons that I learned in 2017 with you in the hopes of helping you to make the most out of this up and coming year.
Whether or not you have an illness, a good support system is crucial to getting through the endless roller coaster that is life. Without the love and support of my friends and family, I don't know who or where I'd be.
Creating a good support system can take constant editing at first. What I mean by that is getting rid of the relationships that not only put stress on your body but on your mind too. Emotional baggage does take a toll on your physical health as well. As someone with a chronic illness, I have limited time and energy, so, I value my quality of life more than if I wasn't sick. When I hangout with someone, I'm putting my trust in them to make sure my time and energy spent is worthwhile.
The people in your life should be a source of reducing stress, not causing it. This quote could not be more true. I had a friend, once, that constantly brought her drama into my life and as a result, interrupted my peace of mind. She would pressure me into doing things that could potentially put my health at risk like going to a party after middle school graduation when just attending graduation had already worn me out for the day. It didn't matter how long I had known her, she never tried to understand my health situation. Once I severed my friendship with her my health and wellness greatly improved. The people that take up space in your life should understand that your health is important and respect that. Not take advantage of it.
Sometimes your circle decreases in size, but increases in value. Truth is, I don't have that many super close friends but the ones that I do have would do anything for me and visa versa. They're the kind of people that will still want to hangout regardless of whether that's in front of the television or at the mall. I know that they would drop everything just to be by my side (I know because they've done it before). Being with them makes me feel loved and valued. I realize that they might not understand the full extent of my illness but they never pressure me into doing something that my body can't handle and they know exactly how and when to assist me without me having to ask. Those are true and meaningful friendships.
People come and go. Everyone that's been in your life was there for a reason. To teach you, to love you, to experience life with you. I think the hardest yet most rewarding lessons that we learn when going through hardship is who our true friends are. People reveal all their colors when they witness someone close to them struggling. Some of those colors are vibrant and beautiful and some are dark and haunting. But that's their problem not ours.
Letting go of certain people in your life doesn't mean you don't love them or hope for the best for them. It just means that you're protecting your inner peace. It isn't the easiest thing to have to do at first but eventually you will feel that weight being lifted off of your shoulders.
I hope this article sheds some light on the people in your life who do and don't belong in your circle.
The last couple of weeks have been the hardest that I've experienced in a long time. I won't go into details because it is a very personal matter but I figured it might be a good opportunity to capture my feelings while they're still fresh in the hopes of helping someone else who might be going through something similar.
Usually, I have a naturally positive outlook on life. It's easy for me to see the bright side of things so it's rare for me to be totally and completely saddened by an event. So rare that I had forgotten how physically exhausting it is to be in emotional pain. To cry gives me a serious headache and leaves my eyes so tired that I can barely keep them open. Unfortunately, this is do to my disease, Mitochondrial Myopathy.
It is said that there are five stages of grief.
- Searching for meaning and support
My mom uses these stages of grief when we encounter a bump in the road when facing unexpected Mitochondrial conditions. She reminds me that the sooner a person reaches acceptance, the easier life will be. I have come to realize though, that grief can not be put into a numerical list. Each of these emotions will be felt on and off. But remember, that it's okay to not be okay.
It's okay to grieve. It's okay to mourn the loss of a chapter in your life you never thought you'd have to part with, as long as you know that someday you will be able to carry on. As long as you know that this too shall pass. But for now the best thing you can do for yourself is to let everything out so that completely moving on is a possibility. This is a process that shouldn't be rushed. Give yourself time to heal, no matter how long it takes.
Days like these make me especially thankful for the love and support of my family and friends. The people in my life who are my constant, whom I can always count on to be there for me. For me, the beach has always been my place of happiness so my parents took me for a drive down to Newport Beach, California to go to a renowned surf spot. It was perfect weather and so beautiful. Whenever I'm feeling depressed the only thing I want to do is grow a pair of wings and fly away. To just be anywhere except where I am and that's how being at the beach made me feel. It made me feel like I was somewhere where my problems don't exist.
Music is also something that has gotten me through the harder times in life. To find a song that perfectly fits everything that you're feeling is an emotion in and of itself. I think music helps us to not feel so alone in this world while also helping us to escape the world around us.
I know that someday everything that I'm going through will make sense. Just like an arrow, sometimes you have to be pulled back to be shot forward into something greater. For now, I have to hold on to my family and friends, let go of how a I think life should be, push on and know that I'm not alone.
Everyone's idea of what makes for a happy life is different. For example, some people like traveling all over the world or have a bucket list of places to go and things to do. On the other hand, some people simply want to have a good career and raise a family. When you're disabled with a chronic illness and are constantly feeling ill, the little things like going to the movies or grabbing lunch with a friend become the things that add quality to your life.
A little over a year ago a friend asked me if I could go to Harry Potter World at Universal Studios with him. Immediately, I felt a pang in my chest. I knew that the trip was a risky one and could end with me in the hospital. Not only would the excitement and overstimulation exhaust me but the estimated two hour drive to Los Angeles would be the sarcastic and figurative cherry-on-top that might through me over the edge. I spent hours trying to come up with ideas that would make it possible to go on this dream of an outing. I thought about maybe staying the night at a hotel near the amusement park or even renting a trailer so that I could immediately rest afterward. My mom even jokingly suggested borrowing a helicopter, haha! But, alas, the dream was out of reach.
Every time I want to go somewhere and spend my energy I have to consider the pros and cons. Whether the fun of the outing/activity is worth winding up in the hospital for. I can not tell you how defeating it feels to be staring up at the ceiling of a hospital room wondering if I could have prevented the outcome. It's rare that I let life get to me but when it does I make sure not to stay blue for too long.
These days, after living with Mitochondrial Myopathy for approximately 13 years I've learned to be happy and thankful for the way my life is. I've learned and am still learning to love the little things in life. When my friends ask what I've been up to, I'll probably say something like "Not Much." But the truth is I've probably ordered something and am waiting for it in the mail or maybe I've painted my nails a fun color. Those things may seem simple and minuscule to some people but for me those things give me joy without wearing me out. They make me excited for the next day.
If you like this please share, comment and/or subscribe. Please let me know how much you enjoyed this post or if there's anything I need to improve on. I can't do this without you!
This post first appeared on musculardystrophynews.com
When I was little I wore a medical ID bracelet because I had asthma. Twelve years later, I recently bought a new medical ID bracelet since the old one got lost. These days, with the progression of my disease and new symptoms popping up every few years, I have many more medical conditions to engrave on a bracelet than just asthma.
- In case an emergency happens and you're unresponsive a medical ID is important to have for a couple reasons: It lets first responders and doctors know what condition(s) you have so that they know how best to treat you.
- It helps the nurses know who to call so they can get the proper medical information. Both these things are crucial in a life or death situation.
If you didn't know, there is actually more than one form of medical ID. Some people prefer to have a necklace instead of a bracelet. Or you can choose to have a simple medical ID card in your wallet with all your important medical info on it. You could even choose to have a flash drive in the shape of a bracelet that a doctor can upload onto a computer and have instant access to your information. As a woman I wanted something that resembled a piece of jewelry.
Some medical ID jewelry can be pretty expensive so before starting your search you should first establish a budget. I stuck to under $50 including the engraving which was $17. Just remember that you’ll want something that's going to last for a while, so more money usually equals better quality. Another tip to help you stay on budget is to always look in the sale section before anything else. You never know, you might find something you love at a great price.
There are many places to buy a medical ID depending on what form you prefer. My top websites to look for a bracelet were:
All these sites carry a wide range of medical ID jewelry for men, women and children. These specific sites stood out to me because of the beautiful bracelets for woman. I ended up choosing the Vienna bracelet from Stickyj.com because it can be worn in the water and if any of my information changes I can just order a new ID tag and easily attach it to my bracelet thanks to the lobster claws. The price for this bracelet was $19.99. plus $17 for the engraving and $4 shipping. The nice thing was I didn't have to pay extra for a tag because it came with the bracelet.
When it came to deciding what to have engraved on the tag I tried to put myself in a doctor’s shoes and what they would consider important information. Instead of having my disease engraved I decided that it would be better to list the most crucial symptoms that would affect any treatment methods. For example, instead of Mitochondrial Myopathy I decided on Cardiomyopathy and Malignant Hyperthermia. I also chose to have one of my doctor’s phone numbers and an ICE (In Case of Emergency) phone number on the bracelet as my contact info. Be aware that there might not be enough room on the tag to fit everything you want, so choose wisely. I also suggest getting a tag that can be engraved on the front of the tag as well if you run out of room on the back.
The best type of engraving to have done is called laser engraving. Unlike traditional engraving which involves a tool etching the words into the metal, laser engraving is the act of using a laser beam to make contrast markings. Traditional etched engraving can wear down over time but laser engraving doesn't, which is why it’s recommended for children's jewelry. This method can not be achieved on sterling silver or gold. Only on stainless steel.
I hope you found this article helpful and that you find a medical ID that’s right for you and/or your loved one. If you like this please share, comment and/or subscribe. Please let me know how much you enjoyed this post or if there's anything I need to improve on. I can't do this without you!
A lot of people don't know that fashion is one of the most environmentally polluting industries in the world along with oil. Twenty years ago, styles and trends would change about every few months. These days though, trends are being stocked and restocked about every week or so. This is where the term Fast Fashion comes from.The way we buy and discard clothing is damaging our planet more than we could ever fathom. It's not just the remnants of our over cumsumption that are risking the wellbeing of our planet, the damage begins at the very start of the process of making the garments that we wear. From the pesticides used to grow the cotton, to the countless amounts of natural (and finite) resources used to dye the cloth, and even the health and treatment of the women, men and even children working like slaves to make that garment. Buying used is better because
- You're no longer suppporting the company that practices unfair work ethics
- You're cutting down on waste by preventing that garment from entering the landfill
- Saving natural resources
I started going cruelty free about three years ago and before this year my interest was only in buying and even making better beauty and personal hygiene products. I knew of people that dedicated their lives to making as little trash as possible and I had been exposed to minimalism but I didn't know a whole lot about the effects fast fashion has on our world and the people in it. Earlier this year (2017) I decided to make it a priority to only buy used clothing. I've never really been one to make and keep a New Years resolution but this time was different.
Buying used clothing is a completely different ball game compared to buying something new at a store or online. It's something that includes a lot of trial and error. Over time you learn from your mistakes and build a strategy. One thing I always try to remember before buying anything used online is to ask the seller if there are any flaws. Believe me, you do not want to get stuck with something that you loved online only to get it and realize that it has a huge stain or rip that might not be able to be fixed. Another important rule for buying used clothing online is to know your size. Now, this can be tricky since a lot of brands have strange sizing. If you're not sure about a purchase for any reason its probably a better choice to seek out something similar at Goodwill or at a Plato's Closet.
There's more than just two ways to shop for used clothing. Of course there's Goodwill and other thrift stores but there are also some great ways to find used clothing online these days.My favorite apps for finding used clothing are ThredUp and Poshmark. I have tried other apps but none of them seem to be able to live up to ThredUp and Poshmark's standards. Another idea is to host a clothing swap party. Gather up your friends and see what they're willing to part with from their closets. The best part about this idea is that its free!
This year I bought:
(Faux leather hoodie-brand: Forever 21-bought on Depop app- $15)
(Love pencil skirt- brand:Topshop- bought:Depop app-$15)
(Drawstring waist dress + Halter bralette- brand:Olive & Oak + H&M- bought: Poshmark- $20-$18)
(Triangle cuff + chain bracelet + Turquoise pendant necklace-bought: Poshmark, Depop, Depop- $11-$10-$10)
I also bought:
Lace yoke top (used) Goodwill-$3
Statement necklace tee (used) Goodwill-$6
Cream lace kimono (used) Poshmark-$20
Double buckle waist belt (used) Poshmark-$8
Moto leggings (new) Nordstrom-$29
Button down skirt (new) Asos-$36
Through this experience I've been able to hone in on my sense of style and really choose pieces that I know I'll wear. I also like it better than buying new because I'm less likely to buy something that everyone else is wearing. If you like this please share, comment and/or subscribe. Please let me know how much you enjoyed this post or if there's anything I need to improve on. I can't do this without you!
This last Monday, July 24th, was the two year anniversary of the day I got my first (and only) tattoo. One month earlier I had just turned 18 and graduated from high school and I was ready for a tattoo.
I had been trying to figure out what I wanted on my skin for a good two years prior and when I think back I'm glad I didn't end up with one of my many ideas. I wasn't concerned with the needle, those don't bother me after years of blood draws and IVs. I was more scared of the fact that I'd be permanently marked for life. I was so worried about being judged just because I wouldn't be a tattoo virgin anymore. I wanted to get it right because regret was not part of my agenda. I didn't want an art piece and anything with color was not my style. I also didn't want to have a copy of someone else's work. I wanted something that would be as unique as I am. Something that would always lift my spirit.
A lot of people don't know this about me but, I love quotes. You could even call me a collector, of sorts. Quotes have gotten me through some of the toughest times in my journey with Mito. One day, my mom suggested the we look up idioms on the computer. There were a few that I liked but nothing really resonated with me like "Blessing In Disguise."It was perfect. It summed up my life in three words.
Living with a chronic illness is definitely a challenge at times. Not being able to be with my friends as much as I'd like and dealing with doctor's that think I'm faking can make life hard but there have also been some great adventures that never would have happened had I not gotten my disease. That's why "Blessing In Disguise" is and will always be a perfect way of describing my life.
At first I really wanted a tattoo on my foot but after a friend asked me if the pain would put me in a relapse, I immediately decided that it wouldn't be a good idea. My mom had gotten her first tattoo a year and a half earlier on her forearm and I noticed her lack of pain so I decided that's where my tattoo would be.
I'm an artist at heart and have been drawing my whole life. For me, it's not just a hobby but a passion so, I knew I wouldn't be happy with a custom design from a tattoo artist. I just couldn't give up the reigns like that for something that would be a part of me for the rest of my life. So I decided to draw it out myself. A few weeks before my actual tattoo appointment I had a consultation with the artist to talk about the design elements of my tattoo and to hopefully bounce a few ideas back and forth. He was very good about listening to my ideas but it still didn't feel quite right. He gave me a great website for testing out fonts in the phrase/word of your choice. I went home and started playing around. I always see such beautiful calligraphy and typography on Pinterest so that's the inspiration i used to create the layout of my tattoo. I also decided to included some flourishes and arrows to break up the design a bit. The arrows represent being pulled back with difficulty but shooting towards greatness.
Thankfully I didn't have to do much research on an artist because the guy that did my mom's tattoo seemed talented and the shop got five stars on Yelp. The shop is called Dead Crow in Fountain Valley, California and my artists name was Tony Nguyen. He's an amazing artist and is capable of so many different forms of art. Each piece he creates is so full of life and depth. I would recommend him for all your tattoo needs. Not only is he a talented artist but he's also a great person. It was important to me to have a good experience and I didn't want someone swearing in my face the whole time. I anticipated that it might not be easy for him to tattoo me in my wheelchair but he was surprisingly very flexible and easy going about it.
Before he put the stencil on me I expressed to him that I wanted the tattoo facing me. This tattoo was for me and no one else. People on YouTube said that the pain would feel like a cat scratch but everyone has a different pain tolerance and it depends on the location of the tat. The pain was bearable but definitely stung. On a scale of one to ten, ten being the worst, I'd say it was a 3.5.
I love my tattoo and I'm beyond thrilled that it's a part of me now. I wouldn't change a thing about it or my wonderful experience. It's a symbol of how God has worked in my life and the millions of blessing that have come my way despite the struggles. If you like this please share, comment and/or subscribe. Please let me know how much you enjoyed this post or if there's anything I need to improve on. I can't do this without you!