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Monday, March 21, 2016

Putting Out The Flame - Raising Awareness for Chronic Pain and Invisible Illness



Today's blog is a personal one....It's been eight years since I was an inpatient in Children's Hospital of Michigan. Nine years ago, in 2007, I stumbled in gym class. I didn't think much of it, except for the fact it hurt! I figured I could wait until the end of my school day, and so I went on with my day, hobbling along. Little did I know, this so called "stumble" would change my life. 

Fast forward a bit...I ended up being diagnosed with RSD (Reflex Sympathetic Dystrophy, also known as CRPS...Complex Regional Pain Syndrome). RSD is a chronic pain condition. False pain signals are sent to the brain. Think of it as a fight or flight response...The body reacts as if it's under attack.   

Symptoms include:

Pain (burning sensation), sensitivity to touch, swelling, changes in color, etc. 

There are also cognitive symptoms such as fatigue, depression, short term memory loss, etc. 


You can contract the condition from a fracture, a surgery to a limb, or from something as minor as a mosquito bite or a paper cut. Many people familiar with this condition think it only affects a limb; it can affect a person internally as well. The condition is known to spread. If you contract it in one limb, over time it may affect the other. 

I believe things happen for a reason. I believe in turning pain into purpose. I've been in support groups and mentor and lend assistance to people afflicted with this condition. I've raised awareness, been featured in a local publication and I support foundations raising money for research so that we can "put out the flame" and find a cure. 

In 2011, four years after my initial injury, I was involved in a car accident. My condition ended up being exacerbated and as a result, I also have Fibromyalgia. 

The Fibromyalgia has caused me neck and back pain as well as chronic fatigue, brain fog, etc. Each day is different. I may not have an illness that is readily apparent and can be seen, but that doesn't mean I'm not struggling. As a chronic pain sufferer, one of the most difficult things I experience is that people don't understand and pass judgment. Chronic pain sufferers live with this 24/7 and some days we can leave the house and enjoy ourselves, and some days we can hardly get out of bed. I've certainly been judged and told "Oh, but you look great or you look healthy." You might see me out on a Friday night, but what you don't know, it's probably taking everything I've got to make it through the night. A long time ago, I decided I would not let this condition take control of me. So sometimes, I would rather be "miserable" and outside doing something enjoyable, than miserable, in bed. My illness may be invisible, but it doesn't mean that I'm well because you can't physically see anything wrong with me.  

People with chronic pain may be fine to go out one moment, but have to cancel last minute. We can be having an ok day and then all of a sudden, it hits us all at once. As family and friends, you might not understand what we are going through, but we need you to do your best to support us. We can't control what we are feeling and experiencing. 

In the chronic pain community, there is a popular story called "The Spoon Theory."  It gives you an idea of what someone in pain goes through on a day to day basis. Below you can click the link to read about it. http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/

While some may look upon my journey as unfortunate, it's also been a blessing in disguise. Sure, I'm twenty years old and have been in pain since I was eleven, but despite it all, I've dealt with the challenges and I am grateful. It's made me the person I am today. I'm very empathetic and have gained knowledge on a variety of topics in the medical and holistic field. It's because of my condition that I've experienced holistic treatments and want to go into alternative medicine myself. I've made lifelong friendships, learned who my real friends are and who I could truly count on. I had to be homeschooled for the majority of my high school career and on one hand that can be seen as a negative, but I choose to look at it as a positive. I was able to travel and do things I could never have done if I had been in school full time. 

I often get asked what helps me because I do not take the traditional route in treatment. I personally like to be as natural as possible. 

I'm a big believer in meditation and biofeedback. Calming the body can really make a big difference. 

Energy healing modalities such as Cranio Sacral, Reiki, EFT... 

EFT is one of the techniques that you can learn to do on yourself. 
I have done EFT (Tapping) on myself and others with positive results. If you have any questions about it, please don't hesitate to send me a message. 

EFT stands for Emotional Freedom Technique and is also commonly referred to as Tapping. You tap on meridian points and it's said to help pain, negative feelings, anxiety, etc. I like to describe it as a mix of acupressure, self hypnosis and energy medicine all wrapped into one. 

I've also found that essential oils can be very helpful for inflammation and pain. 


Electric stimulators such as a TENS Unit if you can handle the sensation. 


Diet plays a major part in our health and well-being. I noticed a few years ago that certain foods inflamed my body. Foods I recommend staying away from...sugar, caffeine, processed foods, aspartame and dairy products. Of course, everyone is different and moderation may be key for you. 


Movement - Do what you can! Today, you might not be able to fathom getting out of bed; but tomorrow, you may be able to make that attempt to walk outside, to get the mail. And praise yourself even for the smallest victories that you accomplish. 

Remember, you know your body better than anyone else! 

I've come a very long way. I'm immensely proud of myself. There was a time, if I were to walk into a CVS with my father, you would find me sitting on the floor, crying in pain. A time when my foot was literally rotated outward to a 90 degree angle and there was nothing I could do to move it back inward. A time when I could hardly walk down a hall without it wearing me out. Of course, I still have my bad days! I've made significant strides and progress and know that it could always be much worse. I'm so blessed to wake up each day and knowing I'm not in the same place I was eight years ago, when I first arrived for my inpatient boot camp therapy stay. 


I'm considering making a blog post about my two week inpatient experience. The program originated at Children's Hospital of Philadelphia. It is used as a prototype throughout the country, for children and teens affected by RSD/CRPS. I've come across many children diagnosed with this awful condition and think my post might provide some insight. 

This blog is dedicated to all those afflicted with an INVISIBLE DISEASE. You're not alone! I'M ALWAYS HERE and so are many others out there. ❤

This blog is dedicated to the friends I've made...Janis, Jamie, Karen, Terri, Jennifer, Susan, Wendy, Ali, my friends at RSD Hope, and my mentees. And to everyone who has stuck by me throughout the years and supported me along the way. 

This blog is also dedicated to one of my role models, Yolanda Hadid. She suffers from Lyme Disease and has gone through more than you could imagine, but she keeps a positive mindset and raises awareness. I send so much love and well wishes to you, Yo!

Thank you for reading this blog. It means lot to me.

If you have any questions, send me a message, email me at TheZenFashionista@Gmail.com, or comment below and I will do my best to answer to them.

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Until next time,

XOXOTheZenFashionista 

25 comments:

  1. Wow......bless you Love....This is a great reminder and eye opener. Things are not what they seem.....compassion!!!

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  2. Thank you Lauren. I am always so proud of you. All you have overcome & all you strive to achieve. You mean so much to me in so many ways. Watching you overcome the initial diagnosis & treatment after treatment but become this amazing advocate for all of us with RSD & invisible illness. You are a Warrior.

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  3. Great article...love the positive attitude! Keep up all your great work. Muahh

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  4. I had no idea Lauren. This sheds a whole new light on a strong young woman who has a lot going for her. Keep up the great work!

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  5. That was a great post! Great job Lauren! Keep it up, I look forward to the next one! Beautifully written.

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  6. Thanks for sharing your story! I am a big believer that when you have a story it should be shared to help others. Good luck to you and everything you do.

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  7. Lauren, of course I was aware of much of the pain which you have endured.I have always been impressed by the way that you learned to deal with the situation while not complaining. Your blog today is well written (as always), but more than that, it's inspirational & informative.I am very proud of you. You've become a fine young lady. Keep up the good work, & needless to say, I hope that your good days are more plentiful than the bad.

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  8. Lauren, of course I was aware of much of the pain which you have endured.I have always been impressed by the way that you learned to deal with the situation while not complaining. Your blog today is well written (as always), but more than that, it's inspirational & informative.I am very proud of you. You've become a fine young lady. Keep up the good work, & needless to say, I hope that your good days are more plentiful than the bad.

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  9. i love your positivity! Thank you for sharing your story, definitely an eye opener. Bless you.

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  10. Hey Lauren! Just wanted to stop by your blog and say hello. First of all, I hope that you're feeling alright today! My mother has a chronic illness as well and I've seen how hard it is for her to get out of bed sometimes. I really admire how positive you are, thank you for writing this! :)

    -Talia
    diaryofmycloset.com

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  11. Love your positivity and that you share this with the world! Good luck to you.

    I use the EFT technique sometimes, it helps me to ground and come at ease when I'm stressful or a prisoner in my mind.

    Sanne Claudine
    www.curvyway.com

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  12. I LOVE this blog post! Very positive! You never know when your life will change or how, but what I really enjoy is that you're offering support to anyone who may be going through the same thing. You will help a lot of people with this post.

    Sincerely Shakila,
    sincerelyshakila.weebly.com

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  13. Lauren, you're one of the bravest human beings on earth! Thanks for being so vulnerable and for sharing it with us. It means a lot to me and I believe to everyone who ever struggled in life.

    I can relate 100% to what you said about that your illness made you who you are. Although I never suffered from a physical illness, depression and anorexia had their toll on me. Nevertheless, I still feel like I had to go through that phase to become the person I am today. I don't wish anyone to experience the pain I felt and I don't think you have to go through serious illness to grow as human, my point is that I (and I believe you, too) walked away from what held us down and learned from it. We made the best of it.
    I think, that's cool :)

    Again, thanks for sharing. Can't wait to get to know you better during the challenge :)

    xx M,
    projectemme.com

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  14. This is such a great and moving post! You're a really strong woman and can be so proud of yourself. You have all my respect for keeping such a positive attitude! It's so important to raise awareness for conditions like this. I'm sure your work and this blog is much appreciated by a lot of people. Keep going! Wish you all the best!

    x Jen

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  15. Lauren, thanks so much for sharing this. It takes a lot of courage to share something so personal in such an honest way, and it's really moving and inspiring. I especially love how you say "I believe in turning pain into purpose". I feel like I need to tattoo that on my forehead as a reminder or something, as that's something I definitely could use help remembering =P

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  16. Thank you for sharing your story with us, it takes a lot of courage. I hope your future will treat you well:)

    <3: Jasmin N | littlethingswithjassy.blogspot.fi

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  17. Thank you for sharing your story Lauren. It is so personal ... You are very brave and you probably don't realize but sharing your story can help others. I've never heard anything about chronic pain... I wish you all the best!!

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  18. Oh my world, I am so sorry. But also I am so happy you have found a way!
    It's great to put your story out here, because I am sure you will help many that have the same.

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  19. You are a great strong person! I am sure your story will help others in their journey!

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  20. Keep up the good work! Your advocacy is much needed.

    www.greatgreenheron.com

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  21. You are my chronic illness soul sister! I related so much to this post. You are so very young to have had so much pain, but I can understand. I was only about 26 when I was diagnosed with Fibromyalgia. It's now been 20 years! You can and will have a vibrant, abundant life... even with chronic illness :-)

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  22. Hi Lauren! I wasn't aware that such illness even existed! I can only imagine how it is to deal with pain in a regular basis! Bravo for not "letting it take control of you" and fighting it so you can keep on enjoying the amazing life!

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  23. I have lived with chronic pain of a while now, but I'm getting better. Some days are really tough and others not so much. Great post, I hope you can raise awareness to this issue!

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  24. Lauren, although this is an older blog, I have recently just discovered you & your blog (a true blessing)!
    Thank you for sharing your personal story. It's from the heart & inspires others! I am sorry you've been through so much yet the way you've become into living life is quite beautiful. When I 1st was diagnosed with fibromyalgia I was using a wheelchair or scooter for a good 2 years. I couldn't be hugged & even a tiny tap on my shoulder (and some people pat hard) was extremely painful. My cat would walk on me & each tiny paw felt (& sometimes still does) like a knife went through me & it hurt for a while, still feeling it after the cat walked off. A blanket touching me hurt and on and on...I also relate to the fibro fog and now, having come a long way I have not only my good and bad days, hours and moments but I am better equipped to handle them. The invisible disease that many not only don't see but don't understand or believe...

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