Hope.

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!

http://www.potstreatmentcenter.com/

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

To donate, visit http://www.gofundme.com/WhitestonePOTSfund

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 Arbonne.com. 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!

Unchained.

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.

School.

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!

Guest Blogger, Melanie Bowen.

The New Year is only a few days away! Given any thought to your new year's resolutions? It serves as a starting point for our goals. Fixing or starting a better diet is a common resolution for many people. I know my strict and limited diet of staying gluten and dairy free has benefited me tremendously. Read the following about what Melanie Bowen, our guest writer, has to say about the importance of nutrition.

Treat Chronic Disease with Better Nutrition 

Millions of people suffer from a problematic chronic disease that robs them of energy, joy and health. Chronic disease range from heart diseases such as heart murmurs to cancers such as mesothelioma. Diabetes and ME are two other chronic diseases that can seriously affect your quality of life. Proper medical treatment and careful living is the only way to get live with these serious conditions. Having to rely on doctor's advice as well as a series of medicine can make a person feel out of control of their life. It can even make them depressed, which may lead to worsened conditions.

However, you can take control of your life back even if you are suffering from serious, chronic conditions—and even take steps to lead your prognosis down a different path. Living a more nutritional life, including eating more nutritional, fat free food is perhaps the simplest way for you to regain your life after a chronic disease strikes. The advantages to a nutritional life are obvious for any person but are even more useful for somebody who is suffering from a serious, chronic disease. Before making any dietary changes, discuss them with your doctor to make sure they are right for you.

Start by eliminating fat from your diet as much as possible. Don't eliminate all fat: it is an important source of energy for our bodies. Instead, eliminate red meat and other fat rich foods from your diet and focus on leaner replacements. Lean chicken, tuna and other types of fish and fowl are full of protein and relatively free of fat. Avoid centering your diet around these meats. Instead, make them more of an occasional boost to your diet.

The World Health Organization often publishes reports on the health of the world and the various ways it could be improved. In their report "Diet, Nutrition and the Prevention of Chronic Diseases" they state that there are three questions to ask involving chronic disease and nutrition: "to what extent do risk factors continue to be important in the development of chronic diseases?"; "to what extent will modifying such risk factors make a difference to the emergence of disease?"; and "what is the role of risk factor reduction and modification in secondary prevention and the treatment of those with disease?"

They found that four of the most common risk factors for creating chronic disease and for increasing their severity were obesity, physical inactivity, cholesterol and high blood pressure. These four factors can be linked directly to a non-nutritional lifestyle. Eating more nutritionally will eliminate obesity, helping to lower your cholesterol and blood pressure. It will also give you more natural energy to exercise, increasing your activity level and improving your health even further.

Clearly, better nutrition has been shown to be an effective, if non-complete way to treat chronic diseases. Never use nutrition as the only way to improve your chronic disease conditions. 

Melanie Bowen is an awareness advocate for natural health and holistic therapies for cancer patients. You will often find her highlighting the great benefits of different nutritional, emotional, and physical treatments on those with illness in her efforts to increase attentiveness and responsiveness on like topics.


http://miladyknows.blogspot.com/


http://www.mesothelioma.com/blog/
Follow the MCA on twitter: @CancerAlliance

Thanks Melanie! Happy New Year!

Tis the Season.

Mom: "Do you need to punch someone in the face?"
Me:     "No, I don't even have the energy."
Mom:  "Want me to punch myself and you can watch?"

This (humorous) dialogue sums up my winter break so far.
First of all, my parents are the parents of all parenting parents. They continue to be my number one supporters and providers. I am forever thankful for their time and energy they have spent on trying to make me better. They're fighting M.E., and putting up with me! This past month has been very rough physically and mentally.
First off, I'm a teenager... a female teenager. Throw in a debilitating, unpredictable illness, and you've got the perfect ingredients for a disastrous attitude! Thankfully, I've been able to keep my head above the darkness of clinical depression, but I've honestly been struggling with my frustration this past month. I do believe positivity is so important in fighting this illness, so I'm trying to recognize my feelings and try not to keep them bottled up.
I did finish my first quarter back at school, applied to some colleges (blog post coming soon!), and I also eliminated meat from my diet- so now I'm a vegan and I'm gluten free. I had a pretty successful, busy, and functional fall... but now winter has really hit me hard. This past month has been stressful to say the least.
At first, I couldn't sleep for days. I'm not talking about the "I-stayed-up-way-too-late-texting-and-on-netflix-and-facebook-and-twitter-and-skype-and-xbox" sleep deprivation. I'm talking about the contradicting side effect, Insomnia. What does insomnia feel like?
Well, I lay in bed. I stretch a little. Take my relaxing supplements. Drink hot tea. Read. Maybe listen to soothing music. Block out all light and sounds. Try to meditate myself into a sleep. Take a sleeping aid. Take another.
Some nights, I can't fall asleep because of the pain and discomfort. It's like all the day's stress catches up to my body. I lay there as my head builds pressure. I lay there feeling my stomach turn and cramp. I feel how swollen my feet and hands are. My legs burn and itch. I'm too cold. I'm too hot. I twist and I turn, every movement shooting pins and needles throughout my joints. Then comes the anxiety- it's worse when you know you have something planned the next day. I can't sleep, so I'm stressed. I become stressed, and I can't sleep! I lay there so exhausted, and I feel so weak. Sleep would never come, not even during the day. It was a vicious cycle.
I'm not on any anti-depressants, so I was only taking some mild supplements to help me sleep. After a trip to my favorite doctor in Bluffton, I was given Xanax to make me relax at night. Thankfully, this helped my sleeping!
Right after I got better control of my insomnia, I got a kidney infection and had possible kidney stones.  I had a very painful night in the ER, and was bed-ridden for two weeks suffering from the Herxheimer reaction from my antibiotics. I knew this just meant I was healing, so I tried my best to stay positive. Literally, the day after I took my last antibiotic, I woke up with a giant, swollen, red patch on my face. Thankfully, I had a doctors appointment for that day already to check on my sleep. Doc decided it was another infection, and he sent me home with more antibiotics. He also gave me his home number, and instructions to go to the ER in case it got worse or spread to my eyes. With a week before Christmas, I was giving Rudolph some competition in guiding Santa's sleigh. Then it was back to bed in recovery mode. It seems the complications are unending. All my symptoms have flared up terribly in the past month, and I've felt no relief. Christmas Eve and Christmas Day was the the lowest I've ever felt. I'm writing this post now out of pure adrenaline; I just shaved my legs! For those of you who are not familiar with the severity of this illness, this was a huge task I've been unable to do because I've been that ill. For a few hours on Christmas Day, I think my eyes were opened to just how severe ME can be, and unfortunately is for too many people. I remember laying there in agony, and told myself to remember how awful I felt. I had been so whiney and frustrated laying in bed for the whole month, but despite the Herx reaction, I have never felt so bad that night and earlier that day.
This is what I wrote on my iPhone for the short time I was conscious before getting some more much needed sleep:
"It's impossible to describe what this feels like. It's beyond tiring to write this now. First, my body feels paralyzed. I feel overwhelmingly weak. It feels like my bones are on fire. They're burning and spreading the flames through my legs. My calves and thighs feel so uncomfortably and painfully tight. It's like a continuous charlie horse... I would rather be running a marathon. I feel heavy. I feel weighted and stuck. I feel restless trapped in this state. Right now, my right kidney is so tender and sore. The pain wraps around to the front to my abdomen. My stomach is sour and I'm woosey and I'm nauseous. My heart hurts. I can feel every heart beat. My chest feels as if it might collapse if I breathe too deeply. My arms are exhausted from just holding my phone in front of my face. My face is flushed. My eyelids struggle to stay open. I am tired. I hope I sleep soon. My ears are ringing. Every sound is like a flare in my brain. It's like broken glass in my head. My thoughts are shallow and clouded. I can't even begin to describe the severity of my sensitivity. To light. To sound. To touch. Everything seems to have a direct line to the pain center in my body, and there seems to be an unending supply just ready to flood over me. I pray this is just a relapse. I'm afraid I've now been given a glimpse as to what severe ME patients feel like all the time. It's truly a living hell. It's Christmas, and I feel worse than I did last year at my lowest. I'm afraid for my body and the downward progression of my symptoms. I'm thankful I was able to go downstairs this morning to be with my family and open some presents. I'm loved and very spoiled. It took so much concentration and effort to open the simplest present. I had to focus on the moving of my fingers, hands, and arms to tear the thin paper. I have to focus on forming sentences. I'm forgetting simple words and descriptions as I write this. I feel absolutely unreal. I feel like I'm in the middle of a night terror. I hope I'll wake up."
Thankfully, I did wake up, and I'm feeling slowly better. While I was not able to go to my family's Christmas out of town, my best friend and boyfriend both came over to see me and brighten my day with gifts and their time. I'm going to a specialist for my kidneys soon and my face is clearing up. I hope all those with severe ME found some relief and joy this holiday season. Despite my confession of my frustration and the heavy description I've given you, I really do feel at peace right now! I am satisfied with my hairless legs, and I am ready to crash by the fire after I finish this post. Merry Christmas to all, and to all a good night!

Thanksgiving.

Exactly one year ago today, I fell sick with the first debilitating symptoms of ME. Memories of what seems like a past life flood my mind. It weighs me down to think of all the things I once was capable of... How much I've missed out on... How much has been taken away from me...  This past year was one I never would have expected. I was in the fast lane to getting on with the rest of my life. I felt limitless. But, a year ago today, life showed me it had other plans besides the fast-paced, easy lifestyle I was living. This year has been the most scary and trying times for me. Times of unending struggle, inevitable pain, and growth. This past year has aged me more than time itself. Today is definitely a milestone. Today marks the first year I thrived despite this horrible disease. Today is also a perfect day to recognize and celebrate.

I am so thankful. The burden of past memories can only solidify the gratefulness I have for everything now. I am so much more appreciative of my body. Appreciative of the strength it requires to get out of bed, to take a shower, to dress yourself, to climb stairs... the list is unending. I am filled with compassion and understanding for all those suffering everyday. This awareness is a gift to be thankful for. I feel more grounded - sometimes more literally than I'd like - I have learned it's not what you do, or what you're capable of, but who you are as a person and the relationships we build that truly matter in this life. I am thankful for what I consider a victorious year! It has been a very dangerous battle-ground. While it seems ME gets the best of me on most days, I refuse to give up, even though I know I have many more years of fighting. I know everyday I'll wake up dependent on my medications. I know everyday comes with chronic pain, nausea, extreme fatigue, and these crazy symptoms- no matter how many hours I tried to sleep the night before. I know everyday is a struggle to get out of bed. But this can't stop me. This disease will not stop me. My life has completely changed with ME. But, life with ME isn't a life without hope! I am thankful for this ability to fight one day at a time. And, I still have the ability to enjoy life.

Honestly, I couldn't be happier. Yes, this disease sucks. Yes, I wish it were easier. Yes, I get scared and upset and wish I could change it. But I am happy. We as God's creation have this amazing ability to find happiness in the darkest of times. I find a little happiness everyday. I'm so happy for how far I've come this past year. I truly believe my family and friends have changed my outcome for the better. They've gone above and beyond to take care of me. They go out of their way to help me, comfort me, and talk with me just because they want to help. For all of you reading, you are making that difference for me, too. That difference between depression and positivity. That difference between accepting defeat and fighting everyday to live. Thank you for everything.

So, for all my American readers, today is truly a Happy Thanksgiving! I love my friends and I love my family. I'm so happy. I'm so thankful for all I have been blessed with. My vegan and gluten-free diet restrictions might keep me from the traditional holiday feasting, but I guarantee I'll still be the biggest turkey all day long! :)