Monday, July 27, 2015

Supporting World Peace

The World Peace Yoga studio is the first place where I felt back home in my body.

I spent years trying to cure my debilitating illness with traumatic, invasive procedures and medications that made my quality of life worse. It was through this repeated trial and error that I eventually sought out more sustainable integrative therapies and healing modalities. It wasn’t until after I acquired a disability that I discovered the amazing resiliency of my body and spirit.

At 16, my self-worth was dependent on how busy I could make my schedule. I thought I was eating “healthy” when I was barely feeding myself low-carb and low-fat diet foods. I didn’t realize how poorly I was taking care of myself until after I caught a virus and suddenly became very ill.

At my worst, my illness left me completely bed-ridden and only conscious for only several hours at a time. After the initial months without a diagnosis, I was desperate for relief. When my doctors stopped having any answers, I had to start looking elsewhere.

My healing first began with food. I have been privileged with the resources to be more deliberate in my food choices. I learned that I couldn’t separate the emotional response from what or how I was eating from my physical body. As I started to understand food as my medicine, I found significant improvements in my quality of life. It was only after I began to eat a more plant-based diet that I was eventually able to work my way into using a wheelchair for mobility so that I could attend the University of Cincinnati.

Unfortunately, my first year at UC was still detrimental to my health. My spirit felt crushed by my increased severe pain as I was pushing myself to meet the ableist institutional standards of success, and my depression and anxiety were at their worst with the additional stress of college.

The World Peace Studio was the first place I started to love my body and myself again. The first time I slowly made my way up the stairs to their peaceful sky-light lit studio, I was met with immediate community support and resources for better self-care. In the quiet moments practicing there, I rediscovered life-saving inner strength and hope.

5 years since the initial onset of my illness, I am now completely mobile with a greatly improved quality of life. While I am still living with my chronic illness, I am finally honoring and loving how I navigate the world around me and learn from my experiences as a disabled woman. I will graduate from UC next year, I continue to advocate for disability rights and social justice, and I am enjoying a more mindful lifestyle full of nourishing plant-based foods and creative community.

World Peace Yoga Cincinnati​ continues to be a powerful source of great healing and inspiration. Their intimate studio, supportive teachers, and dedication to achieve world peace have catalyzed profound physical, emotional, and spiritual transformation in my life. I am humbled to have had the opportunity to learn about yogic philosophy and an ahimsa, or non-violent, lifestyle during my 300-hr Foundational Spiritual Teacher Training + Yoga Teacher Training which I will complete at the end of the summer.

I am proud to learn from a community that is committed to intentional inclusivity. World Peace Yoga provides Silent Yoga in ASL and has trained interpreters for their many other classes and events. They host anti-racist and anti-violence workshops by local activists for the community and their yoga teachers in training. They continue to offer classes for all bodies and abilities and are working to increase access to the studio.

They continue to support me and others who are struggling financially with 30-day Freedom Months of unlimited yoga, “karma yoga” volunteers, and offering work-trade scholarships for their teacher training.

I feel good knowing that I can do my small part everyday to take better care of our earth and the animals and people who inhibit it –including myself.

Now, I am grateful for this opportunity to give back to this amazing community and share with others.

World Peace is in the midst of an ambitious campaign to raise money for more educational resources with two self-published books for delicious vegan recipes and living a non-violent lifestyle. We are also fundraising to update and improve the studio to make it wheelchair accessible.

I know that change is possible.

If you feel called, join me in supporting World Peace!

We are at a tipping point, and we are called to be more conscious of our choices. We can vibrate higher, live in community, and love and give more.

Thursday, January 22, 2015

Guest Blogger - A Holistic Approach to Chronic Fatigue

A Holistic Approach to Chronic Fatigue

By Leslie Vandever

Anyone who lives with chronic fatigue syndrome (CFS) will tell you that it’s a devastating disorder. It can have a negative impact on virtually every aspect of your life. Like the name suggests, CFS causes extreme fatigue that doesn’t ease with rest or sleep. But it’s far more than just being tired.

“Chronic” means that a condition or disease recurs again and again over time. According to the Oxford English Dictionary, “fatigue” is “extreme tiredness, typically resulting from mental or physical exertion or illness.” And “syndrome” refers to “a group of symptoms that consistently occur together or a condition characterized by a set of associated symptoms.”

Chronic fatigue syndrome affects more than 1 million adults and children in the U.S. It can last for years. For a diagnosis, you must experience at least six months of overwhelming fatigue that doesn’t get better with rest and has no detectable underlying medical condition that might cause it. At least four of the following symptoms must accompany the fatigue:

·      general malaise
·      sore throat
·      “brain fog,” including memory loss and difficulty concentrating
·      unrefreshing sleep
·      unexplained muscle pain
·      pain in multiple joints
·      enlarged lymph nodes in your neck or armpits
·      headache
·      extreme exhaustion that lasts more than 24 hours after physical or mental exercise

So far, medical science doesn’t know what causes CFS, though scientists believe it might be triggered by a viral infection, problems with the immune system, a hormone imbalance, or even stress or emotional trauma. So far, there is no cure, and there are no disease-specific medications for it. Given its complex and baffling nature, treating CFS can be frustratingly difficult. Symptoms often vary over time.

But there is hope. By taking a gentle, holistic approach that uses both natural treatments and remedies along with modern medicine, you may soothe or even eliminate CFS symptoms, at least temporarily. This approach includes:

·      Working closely with and communicating with your doctor or other health care professionals.
·      Focusing on the most problematic symptoms first. These may include ways to combat fatigue, sleep issues and their resulting “brain fog,” such as practicing good sleep hygiene; and treating depression and anxiety with cognitive behavioral or other mental health therapy, medications, natural supplements or a combination of all three
·      Treating dizziness or light-headedness, which may include referral to a neurologist or cardiologist, then treating any underlying cause
·      Monitoring prescriptions, over-the-counter medications, and supplements to avoid potentially harmful interactions and side-effects
·      Using care with nutritional and herbal supplements Many patients report that these successfully soothe or ease symptoms, but you should discuss them with your doctor before taking them. Nutritional and herbal supplements are unregulated and, because of the lack of or few clinical trials, provide little or no credible information about or proof of their ingredients, potency or possible side effects.
·      Maintaining proper nutrition Your body requires a healthy diet to function at its best. Many CFS patients are sensitive to some foods or chemicals; some nutritional or herbal supplements may even be dangerous to them. Talk with your doctor or nutritionist about your diet.
·      Managing daily activities and exercise Because CFS causes such debilitating fatigue, learning how much activity or exercise you can manage each day is key. Exercise is crucial for overall health. Tailor it to fit your particular circumstances to avoid exhaustion and triggering symptoms.
·      Improving your quality of life and overall health by using tools like cognitive behavioral therapy to help you manage your symptoms. CBT helps people with cardiovascular disease, diabetes, and cancer; why not you? Other types of mental health therapy, including professional counseling and support groups may be helpful, too.

Leslie Vandever is a professional journalist and freelance writer with more than 25 years of experience. She lives in Northern California.

·      Chronic Fatigue Syndrome. (2012, May 14) Centers for Disease Control and Prevention. Retrieved on October 30, 2014 from
·      Treating Chronic Fatigue Syndrome. (2013, March 3) National Health Services. Retrieved on October 30, 2014 from
·      Chronic Fatigue Syndrome. (2014, July 1) Mayo Clinic. Retrieved on October 30, 2014 from

Wednesday, May 7, 2014

The POTS Treament Center - Dallas, TX

The goal of POTS Treatment Center located in Dallas, Texas aims to get to the root of many conditions by controlling the Autonomic Nervous System (ANS).  It used to be thought that once the Autonomic Nervous System became dysfunctional there were no known treatments of reversing this problem.  Fortunately, we now know that we can retrain the Autonomic Nervous Sytem with advanced technology.

The Autonomic Nervous System (ANS) is the part of the peripheral nervous system that controls the body’s visceral functions, including the action of the heart, movement of the gastrointestinal tract, and secretion by different glands, among many other vital activities.  The ANS functions in an involuntary, reflexive manner.  For example, we do not think about when blood vessels change size or when our heart beats faster.  However, it is possible to be trained to control some functions of the ANS such as heart rate or blood pressure.  The ANS is composed of both the Parasympathetic (PNS) and the Sympathetic Nervous Systems (SNS).  Most of the time, we are in “rest and digest” mode thanks to the Parasympathetic Nervous System.  In times of emergencies or in the presence of danger, our Sympathetic Nervous System triggers the  “flight-or-response” in hopes of survival.  For POTS patients, the Sympathetic Nervous System is always active, causing many debilitating symptoms.  The goal of biofeedback training at the POTS Treatment Center is to learn how to disengage the SNS, and to bring our bodies back into homeostasis through the PNS.  The training involves overcoming this over-stressed system by changing the brain waves and allowing the body and mind to relax, reconnect and relearn what is an appropriate response to stress. 

When the SNS is active, it causes symptoms throughout the body.  For example, constant adrenaline release causes adrenal fatigue and can lead to debilitating and chronic fatigue.  The SNS dilates pupils, causing light sensitivity and blurry vision.  Tear glands are not properly stimulated causing dry eyes, and mucus production is reduced in the oral and nasal mucosa.  Weak stimulation of salivary flow can create gluten intolerance because the enzymes (amylase) found in the saliva are not present to break down gluten (starch) before it reaches the stomach.  Arterioles are constricted to accelerate heart rate, and causes poor blood flow in peripherals, and more blood flow to the heart and brain causing migraines and brain fog.  Bronchi in the lungs are dilated, which may lead to asthma attacks.  Stomach and intestinal mobility and secretion are inhibited causing indigestion and other stomach issues.  Kidneys decrease urine secretion, and the bladder does not properly contract.  Sex drive and organs are also affected by stress and the lack of proper blood flow.  The flight-or-flight response is great if it’s necessary, but for POTS patients, every stimulation or stress is processed like it’s a life or death situation.  The parasympathetic nervous system allows for homeostasis in the body, and releases feel good endorphins, serotonin, and dopamine in the brain changing the body’s chemistry to feel better, unlike the sympathetic nervous system.

The POTS Treatment Center in Dallas uses biofeedback, heart rate variability, and other health and wellness procedures to relax the body and mind back into homeostasis.  The body can naturally heal itself if it is relieved of its stressors, and given the proper nutrition and support we need.


Biofeedback consists of a group of therapeutic procedures that use electronic instruments to measure, process and then “feed back” data of an individual’s neuromuscular and autonomic activity in real time.  Biofeedback is like a mirror for patients to become aware of their psychophysiological processes such as muscles tension, skin surface temperature, brain wave activity, galvanic skin response, blood pressure, blood flow, and heart rate.  Much like you may use a mirror to “fix up” your hair or face, this is a mirror to “fix up” the ANS.  To control and regulate these processes, diaphragmatic breathing is used for successful biofeedback treatment.  Diaphragmatic breathing is vital for blood oxygenation and the stimulation of the lymphatic system.  Once an individual can voluntarily control their breath, their mind and body can relax at any time and place, engaging the parasympathetic nervous system, thus relieving the many debilitating symptoms of dysautonomia. 

Currently, the POTS Treatment Center uses the following peripheral biofeedback treatments: 

1.     Thermal Biofeedback: 
The SNS controls the smooth muscles in the blood vessels walls and therefore the diameter of the blood vessels. When epinephrine and norepinephrine are secreted from the brain to induce the sympathetic nervous system, the smooth muscle is constricted. As a result, this constriction of the peripheral blood vessels or arterioles the blood is forced back to the heart, which increases heart rate. The blood is also sent to the head causing the face to feel hot and the hands to get cold. When a person relaxes, the PNS takes over which causes vasodilation. The SNS activity decreases, the muscle relaxes and blood vessels dilate. This brings the body back to normal. Blood flows freely to the peripheral blood vessels and the hands feel warm again, while heart rate and blood pressure decrease allowing the body to return to homeostasis.

2.     Electroymyographic (EMG) Biofeedback:
EMG muscle scanning is a diagnostic tool to locate the areas of excessive or asymmetrical muscle activity throughout the periphery of the body.  Muscle tension and relaxation can be measure and feedback by the EMG. Sensors placed on the skin over a muscle will detect electrical activity of the muscle.  The patient can be trained to lower muscle activity to normal or near normal levels.

3.     Galvanic Skin Response (GSR) Biofeedback:
GSR measures the adrenaline response in the body through the changes in the sweat gland activity on the surface of an individual’s palm or hand. The GSR sensor is usually wrapped around a finger on the surface of the skin. Relaxed hands are dry and therefore there is no moisture to conduct electricity. Measurements are used to see how relaxed a patient is. If the sympathetic response is still engaged, patients will be anxious and the sweat glands will produce moisture. If the parasympathetic nervous system is kicked back on, patients will be relaxed and their hands will be too dry to conduct electricity.

The goal of the biofeedback program is to help patients retrain their inappropriate physiological processes caused by the overactive sympathetic nervous system in the presence of unchangeable, daily stress.

Heart Rate Variability 

Heart Rate Variability (HRV) is a measurement of naturally occurring, beat-to-beat changes in heart rate.  System-oriented models propose the HRV is an important indicator of both physiological resiliency and behavioral flexibility, reflecting the individual’s capacity to adapt effectively to stress caused by a medical condition or environmental demands.  HRV is a powerful, objective and noninvasive tool to explore the dynamic interactions between an individual’s processes.  POTS patients tend to have erratic heart rates, and through breathing techniques and visualization the brain can reset the heart rate to a smoother and more effective pattern and rate.  This alleviates the orthostatic intolerance and tachycardia.  

Health and Wellness

Heath and Wellness Procedures modify the cognitive and social factors identified as important to the patient’s physiological functioning, disease status, and overall health and well-being.  The POTS treatment center addresses anxiety, depression, and other issues associated with chronic disease or significant trauma through counseling and other relaxation techniques.  Cognitive and behavioral approaches for initiation of an appropriate physician-prescribed diet and exercise regimen are also included in their approach.  Once the body starts to regain homeostasis, exercise intolerance is alleviated and new exercise regimes can be introduced.

All of these treatments have a cumulative effect, and patients will see progress with practice over time.  Success is dependent on the patients engagement and dedication to the treatment. 

The POTS Treatment Center has effectively treated the following conditions with their approach:

Anxiety, Depressions
Generalized Pain
Agoraphobia – with and without panic attacks
Simple Phobia

Back/Neck Problems:
Muscle Spasms
Low Back Pain Syndrome

Muscle Contraction/Tension

Skin Disorders:

Respiratory Disorders:
Disorders of Respiratory Distress  - Muscle

Essential Hypertension
Raynaud’s Disease
POTS (Postural Orthostatic Tachycardia Syndrome)

Gastrointestinal Disorders:
Duodenal Ulcer (without obstruction)
Irritable Bowel Syndrome
Peptic Ulcer
Stomach Ulcer (without obstruction)

Muscle Disorders:
Parkinson’s Disease
Spasmodic Torticollis
Tourette’s Disease (Motor-Verbal tic)
Urinary Incontinence (Sphincter Muscle Re-education)

Other disorders:
Pain, psychogenic
Trigeminal Neuralgia
Attention Deficit Disorder
Weight problems (stress related)

Temporomandibular Joint syndrome
Myofacial pain

I am confident this holistic, non-invasive and progressive treatment will relieve many (if not all) of my symptoms!  While I came to the center because of my POTS, this treatment may cure the other ailments of my condition (ME/CFS).  It will not be an instantaneous fix, but I know that with time and practice my sister and I will only continue to get better.

We can’t wait to add our story to the list of POTS Treatment Center Testimonals!  It is amazing how many people they've cured world-wide.

Thank you for your support.  Without the kind and generous donations, prayers, and support of so many, we would not be able to receive this life-changing treatment. I am thankful for this opportunity to share my story with you all. 

Watch my video about the treatment here: 

Sunday, March 9, 2014


Hope is the most fearless person I know. Growing up as her older sister, her impuslive, spontaneous and loud energetic ways were nearly impossible to control but undeniably the most fun to have around and to get to know. My brother, Billy and I were closer in age and it usually took both of our efforts to keep her from sticking fruit snacks in the microwave or running outside butt-naked. She has always had a free spirit. Hope wears her heart on her sleeve, and she lives every moment with the most contagious passion. Watching her grow into a young adult has been an incredible experience.

Unfortunately, this past winter, my younger sister Hope was diagnosed with POTS, the same type of dysautonomia or, disruption of the autonomic nervous system that I have.  She is unable to attend school due to her illness and is missing her friends, soccer, and all of the normal 8th grade activities. We’re also concerned that it will continue to get worse as it did with me. If we get her treatment as soon as possible, she has a much better chance of making a full recovery from her condition.

There is not cure for POTS, but there is a one facility in the US that offers a unique treatment to help reduce the symptoms. The POTS Treatment Center in Dallas, Texas is the only medical center that offers an intense clinic of combined treatments including biofeedback, exercise and nutrition, treatment of the autonomic nervous system, physiological stress management, and regulation of the heart rate.

While a number of specialists have been treating me over the last 3 years, most of my relief seems to come from the alternative therapies such as acupuncture and massage. These therapies are not covered by insurance. Between the therapies, supplements, medications, and hospitals visits, the medical bills seem to be growing.

The clinic at the POTS Treatment Center is $5,000 per patient and is not covered by insurance. For both of us to attend the clinic plus travel, the costs are well over $10,000. The clinic has tentatively scheduled 2 weeks in May for my sister and I to go together if we are able to raise the money.

The POTS Treatment Center has proven to help so many people like us. There are many testimonials of young women just like me who went in requiring a wheelchair and came out after 2 weeks walking, without an aid! I think this treatment will help both me and Hope so that we can begin our lives again.

If you’d like to see some of the amazing testimonials from patients who attended this clinic, you can watch these on their website. I am hoping that in May you’ll see me and Hope on that list of testimonials!

Any donation amount will help. Thank you for your support.

Thursday, November 21, 2013

M.E., Myself, and We.

Last week, after a neurologist denied me treatment because I “looked normal”, I was abruptly reminded of the responsibility I have to myself and to the ME community to be more transparent in hopes of getting this invisible illness the justice it deserves.

I’m between constantly trying to prove to myself (and the world) what I can do, and staying within the boundaries of what my health/body allows me to do. Just like every other person, I’m excited to see what I’m capable of.  I am a second year student at the University of Cincinnati. I have found my passion in running an organization (Sara Spins) that has helped individuals pursue their education despite their ability, including myself, and has helped to spark a disABILITY awareness movement on campus. I am advocating for equal opportunity and inclusiveness at UC, and overall social justice for all persons with disabilities.

Unlike every other person, I live a very disciplined, isolating lifestyle that revolves around my health. I have Myalgic Encephalomyelitis (ME) which has caused Postural Orthostatic Tachycardia Syndrome (POTS), Chronic Fatigue Syndrome (CFS), Post Exertional Malaise, Peripheral Neuropathy, Interstitial Cystitis (IC), Endometriosis, Celiac disease, and if I listed the rest of my diagnoses you’d think I’m kidding. These are my main concerns…. besides like, being a financially struggling teenage activist in college.

I’m also teetering on the very dangerous edge of a relapse. A relapse happens when I push myself so hard that my body just pushes back by shutting down completely. The last time I relapsed, I became dependent on a wheelchair with severe increase in pain and neuropathy after weeks spent in bed. I don’t know if I would come out of another relapse, or what that would mean for me long term. 
Every day is a constant FIGHT. It’s a very real struggle for me to “function”. It truly feels like my body was not made for this world. On my good days, I can get dressed, maybe do my hair and makeup, wheel myself up the hill to catch the shuttle, make it to my few hours of classes and maneuver around on campus. By the time my classes are over, I usually have a headache or severe brain fog, and can find it hard to even hold a pen or text on my phone. People recognize me on campus because of my wheelchair, and I often find my anxiety/exhaustion by the end of the day makes it almost impossible for me to hold a conversation. I do my best to participate in these moments of the (small) social life I desperately crave, but meetings and social encounters are also very draining to both my cognitive and physical functions. Thankfully, if I’m not in too much pain, a nap after classes usually allows me to work on a few hours of homework, simple house chores, or to read or watch Netflix or a movie. I don't like to watch TV because my brain can’t handle the loud, over-stimulating commercials.  I usually try to rest enough to be sure I can make myself something (gluten free and vegan) for dinner, and I always make sure to clean up after myself. I try to stretch everyday, and if I don’t have class or a meeting, I will go to my yoga studio to do some basic yoga or receive treatment such as acupuncture or massage. By the end of the “day” (12 hours tops), I often find myself in tears from the pain until I fall asleep, given my insomnia isn’t bad that evening. 

On my bad days, I can’t get out of bed (for up to days at a time). I physically don’t have the ability or energy to push myself in my wheelchair, let alone try to stay awake and alert enough for classes. If I’m lucky, I’ll have an hour or two to do some work from my bed, but that will usually leave me extremely nauseous and even more fatigued. These times spent down are extremely hard on me emotionally, because I am terrified of becoming bed-ridden again. I’ve spent a good part of my life stuck in bed with myself, and I have to say I like myself a lot more when I don’t feel so helpless, and when I have a lot more spoons to spare. 

Most people don’t know why I’m in a wheelchair, or that I have ME. Most people don’t know what ME is, and I haven’t been doing a very good job of “showing it”. Even my best friends and family don’t always understand or overestimate my capacity.  Because of my own pride and stubbornness, I try really hard not to complain about how I'm feeling on a daily basis or share when I feel so completely brain fogged that I can't even spell my own name. In my position at UC, I've also learned that (unfortunately) the easiest way to get rid of the awful prejudice and stigma associated with disabilities is proving to others that we are just as capable or able (they call it "Murderball" for a reason). While I am not physically able to participate in these wheelchair sports or other, I continue to support these initiatives at the cost of sometimes ignoring the invisible illness aspect, because I alone do not represent the entire disabled community.

I am not always the outgoing, always-smiling “Sara Spins Sara”. I am struggling. I am sick. I am terrified of getting worse, and I am even more terrified of not doing enough. I am embarrassed I can’t do everything I want to do and that I see my peers able to do. I wish I could seek out every opportunity offered to me at UC, and follow through with every invitation from a new friend. I wish I didn’t feel so isolated, and it is devastating when the physical pain completely consumes me.  I'm also struggling with my sense of identity, because I'm human, I'm 19, and I am not where I want to be with my health. I honestly miss the person I was before running, and I am embarrassed of my inabilities. I’m sorry I’ve been absent from this blog, but I hope to use this as a resource to express the actual reality of what I’m going through. I have ME, I am doing the best I can, and this is nothing to hide. Someone once told me, “You are only as sick as the secrets you keep”, so this is how I will beat the shame, guilt and fear that come with having an invisible illness.

I have lost a lot of function, ability, and time because of ME. I have also been introduced to worlds I would not have been otherwise, and have been given an opportunity for my unique voice to be heard. At times I feel like I’ve bitten off way more than I could ever chew, but at the same time it is this “appetite” for life that keeps me motivated. I am thankful for the ability to share my story, and I promise to be honest and fearless in any/all posts I make on this blog. 

If you are reading this, I hope you don't feel pity or sorrow for me, but instead have found a desire to join me in my fight for the quality of life I feel myself and so many others suffering from ME or a living with a disability deserve. I have found the most powerful thing I can do is to be completely vulnerable and honest with another person (or the entire internet), and provide a space in my heart for them to do the same. We are all going through something.

I know I am not enough to change the world, but who knows what WE could change. Let's find out. 

Ways to help me right now:

Do you use social media? Support Sara Spins, follow us on twitter, and "like" us on Facebook! Help break down the physical and social barriers for people with disabilities! Consider a donation or holding a fundraiser to raise money for Taylor, so that we can get her motorized wheels to her before Christmas! Also, check out Canary in a Coal Mine's kickstarter or their Facebook and follow and support their outstanding efforts to make a documentary on ME!

Do you go to UC? We need a more equal and inclusive environment for people with disabilities. I hope to see structural changes made to campus, as well as the addition of disability-related classes and (at least) a possible minor in these studies. Any and all student events and organizations related to activism and diversity is extremely beneficial to this cause! Also, if you see me on campus, say hello! I like hugs. Just excuse my potential brain fog!

Do you shower? Consider supporting my growing Arbonne business! Why Arbonne? Arbonne is a high-quality, environmentally conscious vegan company that formulates all their skincare, makeup, and wellness products without gluten! I love every single thing I've tried (I credit the yummy protein powder for keeping me alive). You can easily do some of your holiday shopping online at My Consultant ID is 13800233. If you don't think Arbonne is for you, sharing my video or reaching out to a friend who might be interested can also help me in my efforts. Along with developing a better sense of confidence and self, I hope this will allow me to meet my medical financial needs that aren't covered by insurance. I have incredible respect for the company and the women on and leading my team. I'm grateful for Arbonne because it is something no illness or disability can take away.

I am extremely open to any questions, suggestions or comments. 
Feel free to contact me directly or leave a note below. HUGS!

Thursday, February 9, 2012


What would you do if you had a literal ball and chain attached to your ankle? It was stuck there, and you had no way of getting it off.  The cuff dug into your skin, and the chain was loud and ugly. It was so unbearably heavy. Would you lay in bed all day to give your leg some relief? Would you lay in bed all day to hide it so you wouldn’t have to explain why you couldn’t just take it off? Would you drag it around with you? Let it clunk down your stairs every morning, trying to dodge the iron ball that could potentially smash your fragile toes? You couldn’t go anywhere without dragging the heavy, painful imprisonment with you. You couldn’t do anything without a reminder that you were trapped by this awful, torturous thing every second of every day. Your ankle bleeding, your legs permanently bruised from the damaged. And you would know, that no matter what you did, it would still be there tomorrow. And it would be there the next day. You know that even in 20 years, you would still be burdened with your permanent ball and chain. How could you enjoy your day while you were constantly in pain? How could you look forward to anything if you knew that there was nothing you could do about your situation? What if others, especially professionals - locksmiths who might help you get it off- said you had done this to yourself for attention, and they dismissed you and mocked you? What would help you to keep going day to day? My readers, how would you feel about yourself if this happened to you? How would you honestly react? You would be faced with lifetime guaranteed of imprisonment, uncertainty, of pain and of fear. How would you have hope?
My ball in chain seems to have a fancy name - myalgic encephalomyelitis. I have most recently been battling not just physically, but mentally, in every aspect of this illness. Having hope and faith is the only way to keep my sanity. Everyday I wake up knowing that I’ll struggle. I know that no matter how many hours of sleep I’ll get, I’ll wake up exhausted. I’ll wake up and have to immediately take my medication to get through the day. I know I’ll be forced to stay on top of the pills, injections and IVs to barely function out of bed. I know some days, I won’t be able to get out of bed. I don’t know if I’ll be healthy enough to live on my own to attend a university in the fall. I don’t know if I’ll be well enough to ever maintain a job, or support a family. I don’t know if my body will even allow me to make a family, or have healthy children. It seems this illness took over my body, and left me with self-hatred and no self-esteem. Often, I feel weak. I feel worthless. I feel scared. I feel guilty. These are feelings I’ve often tried to suppress and cover up in attempts to stay positive. But I’m finding, for myself, the true positivity and strength has come from addressing these issues within myself and working through them. I am not currently being medically treated for depression, nor do I believe that I am clinically depressed, but I would like to address these feelings in which I’m afraid others with this illness may relate to.
Honestly, I’m an obsessor. I over-think, I over-analyze, and I am overly critical on myself. I am also the biggest worry-wart ever. Before falling ill, I welcomed every challenge. I pushed myself as a student and athlete. I wanted to be the best of everything. Now, I’m forced to be okay with myself and my body. I’m learning to love myself. Before I consciously made an effort to stop, I would continually be disappointed in my body and what it did or couldn’t do. I got angry that I had no control over my body or legs. And mostly, I felt like a burden. When I first fell ill, I felt as though I stopped being the fun, carefree and capable girl, and became the patient. I felt so guilty that my parents and family have had to sacrifice so much for me and my health. I knew my best girl friend stepped up and had to start looking out for me everywhere we went. It hurt so much to know that I can’t be the energetic friend for her all the time. But, the hardest thing I’ve had to wrap my head around is how my boyfriend continually loves me. He met me after I first started to fall ill. He got to know me as my illness progressed. He didn’t owe me anything to stay around as it got worse. Almost a year later, and he still loves me. How could he love me, when I hated everything about my body and my situation? And why did I resent and feel guilty that he, among my family and friends, wanted to help me and take care of me? It’s because I felt unworthy. I felt because I had this illness, this ball and chain, I was truly undeserving. I write this in past tense, because I no longer allow myself to think this way. I was made from God, and God made me in His image, His perfect image. I am perfect, and worthy of love. Just as I allow myself to be loved, I will love myself.
This is the most honest I’ve ever been with myself. I truly believe it’s taken more courage to write about this and address my insecurities than it has to have kept them bottled up. My illness is scary. It sucks. I know that I can only find the strength to have hope and faith within myself. My beautiful, disabled self. I’m an obsessor and a worrier, but I’m also a lover. Yes, a lover. I am finding the love in myself, my spirituality, and my relationships... just in time for Valentine’s Day! I still strive for humility and will hopefully never catch a case of ugly narcissism, but I feel the conscious change in my efforts of how I’m thinking about myself and my body will make a positive difference. I’ve struggle with anxiety, and I’ve found even just talking to myself can be more effective than any dose of Xanax. I often just repeat to myself, “I am calm, I am safe, I am perfect, I am loved” over and over until I believe it. I’ve been happy with the world and even my circumstances, but now I’m learning to be happy with myself. Whether you’re in a relationship or not, I encourage you to be your own Valentine this year, and find the happiness in yourself! Our emotions are our own, and because of that, they are beautiful and necessary. Do not be ashamed of how you feel! Just learn to laugh, and grow in love. I am diagnosed, but I am not defined by this “ball and chain” of an illness. And despite the heavy burden of my ball and chain, I will still love myself. And this statement rings of nostalgic tunes but... all we need is love.

Thursday, January 5, 2012


Unfortunately, when I got sick last winter, I had to drop out of everything, including school. After a few months, I started home-school to try and pick back up where I left off. Thankfully my school was beyond understanding of my situation and made every possible accommodation for my education.
After the summer, I was able to attend Sinclair Community College as a dual-enrolled student. This meant I got high-school and college credit. The school program PSEO (post secondary enrollment options) payed for the tuition, classes, and books. This was easier for me because I only had to go to class 3 days a week for a few hours. I registered with the disability services there, and they made sure my situation was understood by my professors so it wouldn't affect my grade. I took a math class, a chemistry class, a sign language class, and an online english class. It was full-time and it kicked my butt.
For the students and professors who first met me, they would never have known I was ill. They didn't see how hard it was for me to get out of bed that morning and drive myself to the college. They didn't see me struggle to walk to class and carry my backpack. They didn't see me taking my medications in private to avoid weird looks or conversation. They didn't see me throwing up in the bathroom from the nausea and sickness. They didn't see me crying in the bathroom over the physical and mental stress of trying to be a normal student. I got to experience the first of what I fear and know I'll have to deal with for the rest of my studies.

Example 1: The Professor.
I walked in to my first chemistry lab after my exhausting and longest day at school. I immediately noticed that there were no chairs or stools for the 2 hour long lab. I had 3 other classes before this one, and I knew I would also be exposed to chemicals which would irritate my sensitivities. It's impossible for me to stand that long without passing out or collapsing from the pain in my legs. I walked up to my professor, an older man who thought he was funny, and pulled him aside before class. I explained to him I had a condition that causes me to pass out if I am standing for too long. I said that I would fully participate in the lab, I just needed a chair or stool to sit down if I felt faint. He then turned to the class, and made a joke about me fainting. Specifically, said something about "fainting goats" (which I think is a youtube video). He then dismissed me, and walked away. I was dumbfounded. I am always surprised at adults who don't act respectfully. I thought I had left high school... I then walked back up to him and firmly said I was registered with the disability services and if he had a problem he could contact them. I stated that I needed a chair or I would be a liability. He then obliged. This was only the beginning of the struggle I had with this professor! I had to jump through ridiculous hoops to be able to even take tests and to get the grade I earned. It was so frustrating to deal with his lack of cooperation. Thankfully, the disability services were in my corner and handled the situation appropriately. The worse part was that he saw me parked next to him in the handicap spot every morning. I once told this story to my nurse... her response was very fitting and made me laugh! She said, "Well, what's his handicap? Ignorance?!"

Example 2: The "Friends".
My handicap parking was a huge blessing for me. I got to park right under the building where I had most of my classes in the professors' parking garage. This limited the distance I had to walk. My backpack was heavy and my legs were weak. The more walking I had to do, the more pain and fatigue I had. One day, I ran into some old "friends" from my high-school who were also apart of the PSEO program. I had grown up with these girls and once considered them my best friends. When I fell ill, I was tormented and teased by them while I suffered through my last days at my high-school. They even spread rumors that I was faking it when I couldn't attend my class. These girls were mean and I separated myself from them. I consider this disease a filter for the people I don't need in my life. This filter makes a barrier between me and those who are toxic and insensitive to my situation. I cannot waste my energy and time on people like that. I try not to be sad for the loss of this "friendship", but I truly pity their lack of perspective. As I ran into them, I smiled and made small talk like I would do with any stranger. They then asked why I was walking toward the teacher's parking garage. I explained that I was parked there under this building. I started to walk away, again, and they continued to question me. I faced them. I told them I had handicap parking now. The girls laughed in my face and said, "You're really milking this, aren't you?"

Example 3: The Confrontations.
I didn't want to be the sick girl at college. I hid in the bathroom often. I took my medication in private to avoid any confrontations. I was thankful for the disability services, but they couldn't save me from everything...
One time, I was sitting in the cafeteria by myself. I opened my backpack which held my medications, and discretely took my pills. Apparently, some guy still saw. He felt the need to pull a poster off the wall and he placed it on my table as he walked away. The poster read, "Abuse Support Group" with promises of saving my life from destructive decisions. I laughed and thought to myself, if only I had the luxury of making a decision like that.
On my last day of classes, I was leaving the parking garage. This one attendent asked me every time if I had the handicapped parking... and every time, my sign was clearly hanging off my mirror. Thankfully, she was rarely there when I was leaving, and she was the only attendant that continually questioned me. She asked me again if I had the handicap parking.
I smiled at her. "Yes, ma'am." I handed her my ID.
She then made a "hmph" at me.
My forced smile parted... "Excuse me?" I questioned.
"Well," she handed back my ID, "You just don't look, handicapped."
"And you don't look that ignorant."

I'm not usually a confrontational person. The anxiety makes situations like that even worse. But that quarter taught me to stand up for myself, whether I had to face professors, adults, or peers, and to just stop caring about what other people thought. I have a supportive family, a best friend and boyfriend, and a few others who take time to help me out!  The best thing I've learned is to just laugh and move on. These examples are just a few of many situations I experienced.
After the quarter, I was wiped out. I got my first B in a class, but I got all A's otherwise- including chemistry! I applied to some colleges and tried to relax during my break. Unfortunately, my break has also wiped me out.
Starting at the beginning of December, I got a kidney infection and possible kidney stones. Immediately after, I got cellulitis in my face. I crashed on Christmas, and now I'm suffering from another upper respiratory infection. I've been basically house-bound this whole break, but I'm surprisingly happy!
I got accepted to the university of my first choice! The University of Cincinnati accepted me to their Pre-Medical Biomedical Sciences program! I also just received my first scholarship if I attend there! The only thing keeping me from going would be my physical limitations of being independent and living on my own.
This disease is limiting. It's debilitating. It's a disadvantage I'll have for the rest of my life. But I know that I can get through this. I want to be a doctor. I want to study the very thing that has taken over my life. I smiled through this. I'm getting through this. And now I'm moving on!