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