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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


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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.
  1. 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. 
  2.  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.
 I not only know this from watching many ER shows on television but because I myself have been picked up by paramedics and have been in the emergency room on numerous occasions.

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!


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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 
  1. You're no longer suppporting the company that practices unfair work ethics
  2. You're cutting down on waste by preventing that garment from entering the landfill
  3. 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!

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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 YelpThe 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!

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Lately I've come across the term "Spoonie" a lot in the chronic illness community. My curiosity finally got to me and I looked it up on Wikipedia. Turns out it's a metaphor that a girl in college came up with to explain to her friend how someone with chronic fatigue has to plan out their day. Spoons are used as a visual representation to measure the reduced amount of energy that person has. Each activity like cleaning or making a meal diminishes a persons energy, therefore subtracting a spoon from the group. That spoon can only be added back once the person rests and regains that energy. In short, the perfect explanation for my day to day life.

       As a spoonie I experience frequent down days that I call relapses. See my blog post about how I embrace the relapse. I can't exactly say that relapses are anything fun or enjoyable. Sometimes it takes complete sensory deprivation to get back on your feet and typical symptoms worsen substantially. So, I thought that maybe a change is in order. In this blog post I'll be sharing some cute ideas to take your next down day to the next level, in the best way possible. 




Pajamas/loungewear: When I feel my worst the last I want to do is to put effort into my appearance but that doesn't mean you nor I have to look homeless. There are plenty of options out there for cute and comfy loungewear. Urban Outfitters has some fleece jumpsuits and rompers and Forever 21 is stocked with fun graphic pajamas. 

Slippers: I've seen some seriously adorable slippers out there but the ones that grabbed my heart were the emoji ones! How can you feel anything but happy when wearing these? I found these on Amazon.com and they come in many sizes. 

Movie/TV Show: It's hard to find an activity where I can completely rest yet still enjoy myself (if you call laying around binge watching television an activity). When there isn't something good on TV my go to movie is The Fault in our Stars. I could literally watch it every few weeks and never get bored. 

Bath Salts: The bath salts bring in that spa feeling that's missing from every lay-around-day. The hot water may even help with that chronic pain. 

Candle: Certain smells can help to put you in a relaxing state of mind. TBH, I have a hard time with smells do to asthma so something like lavender would not be good for me. But I can handle things like coconut and apple cinnamon. Bath and Body Works makes some very tempting scents like one called Summer Boardwalk that smells like salted caramel popcorn. 


Head Massager: If your husband or boyfriend (or girlfriend) isn't home to give you a back rub, no worries. Just whip out your handy dandy head massager! But be careful, he might steal it from you. Click here to buy it from Amazon.com. 

Mug: I'm a sucker for mugs so I couldn't leave one out of this kit. Nothing is better than cuddling up in a blanket with a hot drink in hand. Unless of course, if it's a hot summer day. Target has a great selection at low prices. 


iTunes Gift Card: Sort of like sending yourself a bouquet of flowers, give yourself the gift of music. Keep an iTunes gift card in your kit to give yourself something to look forward to the next time you're not feeling well. 

Facial Mask: A facial mask is a fun thing to add to your kit and doesn't take much effort. I think a sheet mask is a better idea than one that you have to apply with your hands because it's less of a mess. 

Some other things you could add to your kit:
  • Drink of choice
  • Coloring book
  • Blanket
  • Pillow
Your next relapse doesn't have to be as dreary as the last. I hope this post gave you some inspiration to make your own Spoonie Survival Kit. If you liked 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!









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  It's not always easy to be positive with a disability, especially in the beginning. It's hard to see your friends doing things that you can't. The stares are hard to ignore and there are people that simply don't want to understand your situation. Which doesn't make life any easier. But that doesn't mean that happiness is impossible. Every disability is different and we all have our own unique obstacles to conquer so here are a few things that I do to stay positive and happy

Activities

Blast your favorite music: Science has shown that music can aid in sleep, help get rid of stress and anxiety, there have even been studies that showed that music helps with depression and pain relief.  I listen to music every morning to kickstart my day or to make a dreaded task more fun. So rock out, get loose and don't be afraid to shake it!
 

Go outside: Ever watched the movie "The Shining"?As Jack Nickleson would say "all work and no play makes Jack a dull boy". If you lock yourself up long enough you will become a "Dull Boy"!  So go out on the porch, take a walk or go to a park. It doesn't matter. Just get some fresh air, take some deep breaths and clear your mind. You'll be surprised how much this will lift your spirits. 

Hang out with a friend: Being around someone you love and who loves you will give you that distraction you need. It can be easy to get stuck in your own world when you have a disability so make it a priority to spend time with your friends. You don't even have to step (or roll) out of the house for this one.

Meditate: I've only recently discovered meditation and it's a lot easier than I thought it would be. Especially if you're doing guided meditation. There are guided meditations for all sorts of specific needs. It's good for releasing all that negative energy. I probably sound like a hippy, which I'm not ashamed of, but you never know what something is like unless you try. 
 

Things to remember

Go with the flow: Having a disability is all about acceptance. James Patterson wrote in one of his books "the more you go with the flow, the more whole you'll be. The more you resist, the more pain you'll feel". 

Count your blessings: I know it sounds cliche but doing this has really made a difference for me. Whether you write it down in a journal or say it in your prayer at night you'll feel a difference once your awareness shifts from focusing on your problems to your blessings. 

Smile at the ones who stare: For some reason, people tend to analyze people with disabilities. Let them know that you're friendly and approachable. Or you could think of it as killing them with kindness. Some will smile back, some won't. But that's their problem, not yours. When I was younger and before I learned this trick, someone staring at me could ruin my day. But now, I have a thicker skin and don't give it a second thought. 

Things could be worse: There's always someone out there wishing they had your problems. Not to say that your life is any easier than theirs or that they understand. I'm only saying that maybe your life isn't as bad as it could be. Every time I'm in the hospital I always think about the other kids who are having siezures or have a bleed in the brain. It really puts things into perspective. 

There's good in the bad: The Yin Yang symbol comes to mind. The black represents the bad and the white is the good. They both are a part of one another. With out the bad how can good exist.  The good might be harder to find sometimes but it's there in every situation. I'm so grateful for the beautiful life I have because I know what it's like to have almost lost it. 
 

Look for the extraordinary in the ordinary: There are little miracles happening everyday. All around you. For me it's things like getting out of a 
relapse or a new doctor that is dedicated to helping me.

See your problems as potential teachers: Whether it's to teach you or someone else, our struggles are there for a reason. Take this post, for instance, how can I try to help you with your struggles without having lived through some of my own? Life is one big story and (like this blog) those problems can be used to uplift someone else someday. 

You are not your problems: This is taught a lot in meditation. Knowing that your struggles are not a part of you but a manifestation of the outside world is a big load off your shoulders and makes it easier to release those emotions. 

You are only human: We'd all love to have superpowers but we don't. It's ok to be upset or to get frustrated or to be sad. We can't do everything and it's unfair to expect perfection out of ourselves. 
 

Trust fate: Want to know how to make God laugh? Tell him your plans.  He'll get a kick out of that. What messes us up most in life is how we think things should be. Jeremiah 29:11 -  I know the plans I have for you, says the Lord. Plans to prosper you and not to harm. Plans to give you hope and a future. 


Just implementing a few of these things into your life is a big success. Learning to happy while living with a disability is a process. It doesn't happen overnight. 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!




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I've had a pixie cut for about three years now and to be honest, it was one of the best decisions I've ever made and I would never go back. Believe it or not, eleven years ago my hair was so long that I could sit on it. A friend of mine had donated her hair to a cancer organization that makes your hair into wigs and I decided I would too. I ended up donating almost twelve inches of it!

 
         When it came to figuring out which specific cut would work for me I gradually went shorter and shorter so that I could perfect the exact length and style that I liked and felt comfortable in. I recommend doing this instead of just chopping everything off because it gives you a chance to get used to the length. I also did a ton of research and talked to my stylist about what would work with my lifestyle. Keep in mind that everyone has different hair so what works for someone else's hair may not work for you. For example, my hair stylist made my layers longer in the back so that after I lay down I won't look like a porcupine (lol). I chose to keep my bangs on the longer side because it elongates my round face and looks better if I choose to wear a hat. 
 

 Less hair to wash   
     When you have a chronic illness taking baths and showers is not relaxing and is even put on the back burner when we're feeling our worst, so the less time spent bathing ourselves or having someone else bath us, the better. With a pixie cut you don't have to spend the extra time and strength waiting for your conditioner to sink in. That's a huge step that you can forget about! You'll also be saving money on shampoo. Who wouldn't love that?

Faster drying time
Drying my hair on my own is not an option. Long or short, it doesn't matter. The hair dryer is too heavy and I don't have the strength to keep my arms up for that long so my mom dries my hair for me. I remember being little and she would have to sit down in back of me on the couch to dry my hair. Now with a pixie it takes around ten minutes. If it takes any longer than that's an indication that I need a haircut, haha. 

No tangles
One of the worst things about having long hair are the tangles and they can become a constant annoyance when you spend a lot of your time laying around. Before I donated my hair I had undergone a big surgery to extract a piece of muscle from my thigh for diagnostic purposes. It left me unable to bare weight on my leg for a week and during that time I developed a massive knot in my hair that resembled a rat's nest. When I was little it was my chore to brush out my hair every morning before school. Now, the only time I use a brush is if I have a cowlick that won't cooperate. 

Long hair can be a lot to take care of for both you and/or your caregiver. If you've been thinking about getting a snip I hope you found this helpful. If you liked 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!