Wednesday, December 28, 2011

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.
Follow the MCA on twitter: @CancerAlliance

Thanks Melanie! Happy New Year!

Monday, December 26, 2011

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!

Wednesday, November 23, 2011


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! :)

Sunday, October 16, 2011

30 Things About Me...


1. The illness I live with is: Myalgic Encephalomyelitis and POTS (Postural Orthostatic Tachycardia Syndrome)
2. I've been sick since: November 24, 2010. 
3. But I've had health issues since: January 2008.
4. The biggest adjustment I’ve had to make is: EVERYTHING. Literally, the only constant in my life has been my family and my best friend. But, change isn't always for the worst.
5. Most people assume: I limit my activities by my own choice. 
6. The hardest part about mornings are: opening my eyes.
7. My favorite medical TV show is: House. (Dr. House, where are you?!) & Scrubs. JD is adorable.
8. A gadget I couldn’t live without is: my cell phone. (I'm a teenager, duh.)
9. The hardest part about nights is: not being able to sleep, and being alone with negative thoughts. Dealing with the pain.
10. Each day I take (up to) 61 pills & vitamins. (No comments, please)
11. Regarding alternative treatments I: recognize them as being very beneficial! Drugs and medications don't fix everything. Our bodies came from nature, why not try natural remedies? 
12. If I had to choose between an invisible illness or visible I would choose: invisible. I'd hate being the "sick girl" everywhere I went.
13. Regarding working and career: I'm going to take on the very illness that has taken over me.
14. People would be surprised to know: I still sing in the shower.  
15. The hardest thing to accept about my new reality has been: the fact that I can't "push through" it.
16. Something I never thought I could do with my illness that I did was: help with a successful benefit show, Hummingbirds. We raised almost $1000 dollars for research for ME/CFS in one night!
17. The commercials about my illness: mostly focus on Fibromyalgia. & the actors are all 40 years older than me. 
18. Something I really miss doing since I was diagnosed is: running.
19. It was really hard to have to give up: running, my job, my youth orchestra, and pineapple.
20. Some new hobbies I have taken up since my diagnosis is: blogging, pill popping, guitar, and yoga.
21. If I could have one day of feeling normal again I would: run. I would run for miles and miles and miles. Forrest Gump style. 
22. My illness has taught me: mental strength, discipline, and self acceptance. (This is a work in progress.)
23. Want to know a secret? One thing people say that gets under my skin is: "You don't look sick". 
24. But I love it when people: do research of their own and ask me questions!
25. My favorite motto, scripture, quote that gets me through tough times: I have many, but I always remember that it could be worse. "Whatever was not planned by me, was planned by God." -Edith Stein
26. When someone is diagnosed I’d like to tell them: "Be persistant, be disciplined, and don't you dare give up. Let the good days be good, and the bad days be bad."
27. Something that has surprised me about living with an illness is: the support and feedback I've received from people I barely knew!
28. The nicest thing someone did for me when I wasn’t feeling well was: not asking how I was feeling, distracting me from the pain/sickness. I love hugs.
29. I’m involved with Invisible Illness Awareness because: so many can't voice their invisible illnesses like I have the opportunity to. 
30. The fact that you read this list makes me feel: hopeful! Hopeful that people will learn to understand. Not just about an invisible Illness, but about tolerance in general. You never know what people are going through. Everybody's got something. 

Sunday, October 9, 2011

Voices from the Shadows

Not only is this complex illness misunderstood, misdiagnosed, and mistreated, it is cast aside and shoved into the darkness by research. The controversy over this proven physical disease is appalling. Some ignorant professionals treat this as psychosomatic. They lock these "lazy, crazy, depressed" patients into wards and force them into inhumane treatments. Sufferers have been kidnapped from their homes and caregivers. They have been robbed of their life.

This documentary is eye-opening, moving, and heart-breaking. I have been blessed with only a mild case of this devastating illness. So many others are completely paralyzed and bedridden. So many are unable to speak up over their pain. So many are dying from the lack of proper care, and lack of awareness.

Please take some time to watch this film. Be educated. Be informed. Be thoughtful of the families and relationships torn apart and the lives lost.

M.E. is a real, horrific disease. Still, I fight every single day. I am not the only person M.E. has placed at a disadvantage. I am fighting for the doctors who lost their jobs trying to protect the truth. I am fighting for the families who watch their loved ones change and wither away before their eyes. I am fighting for the patients who can't see the light, can't walk outside, can't be with visitors, and can't leave their beds. I am fighting for those who have been killed.

We cannot ignore those confined in their paralyzed bodies. 
We cannot turn our eyes away from those who are trapped in the dark. 
We cannot close our ears to the cries from the voices from the shadows.

Saturday, September 3, 2011

Keep Fighting.

SO EXCITED! Thank you Fight Like a Girl Club for posting my story!

Check it out! Sara's Story

This couldn't have come at a better time. I was up dealing with another "crash" tonight after an eventful (and HOT) few days. This certainly lifted my spirits!

The response I've seen from this has been absolutely incredible. My post has seemed to travel all over! I've made new connections via FacebookTwitter, and email with other patients.

I can't stress enough how important awareness and understanding is! I hope this makes it easier for others to see how living with any hidden problem can be so challenging. We all have something in our lives we have to overcome, and often it's hidden from plain sight. It might be a disease, problems at home, financial issues, depression, insecurities, etc. but support can make all the difference. Be kind to all those around you because you don't know what they may be going through. Be brave and reach out if you see someone struggling. It really can make a world of difference. I know while in high-school, being supportive is the last thing you would expect from a bunch of teenagers... but I am so touched by my classmates and friends! The feedback I've received from the online community has been overwhelmingly great. It took some courage to share my story, but I'm glad I did. There are many others with this illness who are bedridden and cannot express themselves like I've been able to. I did not choose this, but I can choose how I'll live through it and despite it.

I also wanted to share a link,

I really related to what she was describing. I ask for you to take a moment and read that article, it might put things into perspective a little.


Thursday, August 18, 2011

Life's a Beach, Cont.

Ironically enough, right after I posted my last entry, I "wiped out". I passed out, hit my head, and ended up in the hospital for the rest of the night. Thankfully, besides the swelling, bruising, black eye, and ugly scratch on my face- no serious injury was done. 
Just as I am uniquely familiar with the ocean, I've had more than enough experience as a patient in the hospital. I've been to the doctor more than I've been to any parties. I can list off my lengthy list of medications faster than I could tell you the names of the characters on Jersey Shore (hate that show). And I've been told multiple times that I am pancreas model worthy. So, It does make it easier that I know what to expect and what to be prepared with. The machines, monitors, and needles don't phase me. It's usually the bedside manner or the repetitive questions about my disease that I struggle with the most. On this trip, I hadn't been in that much pain since my surgeries in 2008. The last thing I wanted to do was listen to any disbelief or controversy over "this fatigue disease". I'm grateful my doctors weren't clueless or rude. Yes, my parents raised me to say "sir" and "ma'am", even at 4 in the morning, I will still address you as such. (Really, one doctor once was severely offended by this!) I may be young, but I'm not completely reckless and niave...
Going to the hospital becomes extra stressful when you show up with a lengthy medical history. You can assume you already know more about your body than they do, but you hope for understanding doctors who can listen. We didn't need the ER  docs to figure out why, we just needed to make sure my brain wasn't as rattled as I was from the fall.
So no major injury, and I'm healing up just fine. Thank goodness for my amazing friends and my  boyfriend who were willing to just hang out and watch me recover all day yesterday.
And if that wasn't enough, I fell today. Again. This time, I think it was just because I lost my balance.. But I landed on my head. Again. Ugh. Frustrating. And SO. Very. Painful. but what can I do but move forward? 
For those of you reading with similar problems, this feeling is definitely relatable. Just keep going. Persistence is so importance. I'm learning it's okay to lean on those we need, but it's even more vital to have faith in yourself... even if your body is failing you. I'm more than ME/CFS and POTS. It's definitely unsettling to have these setbacks, but I know I can't stay down forever. I'm stronger than any crash or wipe-out. I've just gotta learn to ride these crazy waves in.

Tuesday, August 16, 2011

Life's a Beach.

I thought it looked pretty easy. I've always had a unique familiarity with the ocean. My parents have been taking me to the east coast every summer since I was six weeks old. I'm so thankful for our annual pilgrimage to the beach. The salty air, the cool ocean, the warm sand... I can't think of anything better. It's such a rejuvenating experience. My parents used to have to drag me out of the waves after hours and hours of swimming. But last summer, I decided to try surfing.
"Just relax, duuuude." Tito, my instructor, yawned. (Tito was just as comical as you could imagine him. Big belly, big beard.) Yeah, relax. While I'm strapped to this giant death trap, awkwardly trying to stay afloat despite the swelling waves beneath me. I cringed as I felt the tide build, and said a quick prayer to dodge any sandy face plants. "Here she comes!" I clung to the board as he threw me into the surf. In a brief moment of amazement and surprise of my success so far, I tried jumping to my feet. Tried, and failed. I slipped right off the board and into the crashing waves. I plunged into the cold water, driving my body into the rough sand. But the ocean wasn't done with me yet. Still attached at the ankle, this massive anchor was dragging me around like a fish on a lure. In fact, I think a dead fish might have looked more graceful out there than me. So there I was, making a complete fool of myself while my dad was catching it all on camera. I could see the local kids easily riding the waves as my head popped in and out of the foamy, salty water. Even though Tito had to pull me out like a rag doll and plop me back on the board, that wipe out did not stop me. Neither did the next one. Or the next. Or the one after. Or that other one... I had more sand-burns and water up-the-nose than I had peaceful rides, but I still consider surfing a success.
Our trip to the ocean this summer served as a checkpoint for me this year. Comparing myself to last year, before I got sick, I could think of endless disadvantages, changes, and missed opportunities because of this disease. I had plenty of time to think about those during my "crash", while I was in bed VERY sick after the first day of vacation. Talk about a wipe out. No one likes to throw up in a foreign toilet. But, I am so thankful for our trip this year! It gave me some much needed family time. I also had alone time to reflect and get away from it all. I enjoyed the sunshine and surf more than ever. While I couldn't ride any huge waves due to my burning and weak legs, I was able to truly relax by my family and soak up some rays. While I was kept awake because of the pain, I had the opportunity to watch the sunrise multiple mornings. I never really had taken the time to do that, and I know I certainly didn't appreciate it as much before. Now I did recover from my "wipe-out" after a while, and got to finish out our fantastic vacation. My parents are so awesome for always carrying on this tradition... despite any challenges or financial and life stresses.
I haven't blogged in a while, and my excuse is that I've really been trying to get prepared for this coming year- both mentally and physically. I am making great progress with my condition and learning how to manage it! My leg pain has drastically improved with the use of the LED light therapy bed and my new drug, Neurontin.
I have also been trying to build back more strength in my legs. I'm hopeful to run again in the future! I actually laced up my tennis shoes for the first time today since November 2010. What a magical feeling... I only put them on to go to the YMCA to do my first yoga class, but still! I had been doing yoga at home with a DVD, but it was much more exhausting to do it in a group setting. My favorite pose is my original "amoeba", just relaxing nicely sprawled out on the floor...
I am so so happy with my improvements. It does take a lot of self discipline and I have to make sacrifices. I will always stress the importance of my friends and family who support me and try to understand. I know the wipe-outs seem inevitable sometimes, but that one ride will make it all worth it. I've got down the treatments, the supplements, the drugs, and the yoga. Now I'm trying to just learn to relax. Duuude.

Friday, July 15, 2011


It seems like Christmas in July. Well, how I remember Christmas... spending it in bed, on the couch or with my head in the toilet. It was days before my hospitalization due to dehydration. Winter was filled with painful and sick days that dispersed into the rainy spring. So here we are again, it's July, and I feel simliar to how I did during the holidays. Thanks to the antiviral!
While this seems like a whiney start to this post, I'm actually glad I'm feeling this way! It's proof that my new medication is working. This antiviral, Valtrex, has been found to help patients recover from EBV (Epstein Barr Virus). This virus, also the cause of mononucleosis, may be the cause of my ME/CFS. Dr. Lerner is one of the pioneers in the studies of treating ME/CFS with antivirals. Check out for some great and promising information! Big thanks to my lovely mom for doing so much research for me!
"Long story, short" the EBV virus hijacks the cell. It tries to force the cells to create building blocks for other viruses. The cells are then littered with viral proteins and it decreases the efficiency of the cell. Reactivation is when the virus spreads from cell to cell. The antiviral comes in and stops the process of reactivation. It suppresses the virus from doing anymore damage to your body. The longer the virus has been free in your body, the higher the viral count is. Hopefully, my viral count is lower, so the antiviral will work faster than those infected for years. The side effects of the antiviral is similar to those undergoing chemotherapy, but since I haven't been exposed to the virus for an extended amount of time, the severity and length of recovery should be shorter, as well.
So, back to those "holiday feelings", I'm now dealing with a Herxheimer Reaction. My body is overwhelmed by the toxins being released. My liver is overloaded, and all my symptoms are flared up big time. I'm extremely nauseous. My headaches have upgraded to migraines, with the added bonuses of ringing and pressure in my ears. My entire body feels like it's throbbing, and I'm very, very sore. I've also  got a low-grade fever (my body temperature is normally around 95 or 96 degrees Fahrenheit). I'm doing my best to speed along my body's natural detox process by downing jugs of water. Can't wait for those cliché, back-to-school questions... "Sara, what did you do over the summer?" "Oh, just kicked EBV's ass, and sent my ME/CFS into recession."
Ah! I'm going back to school! With the help from my friends and family, I've signed up for classes at Sinclair Community College in Dayton. While I'm only a Senior at Valley View High School, this allows some flexibility with my schedule- I'll only be going to school 3 days a week. I'm anxious when I think about trying to walk all over campus all day. I really hope I'll be able to keep up, both mentally and physically.
Honestly, I didn't plan for this my senior year. I had goals of being valedictorian, honors diploma, etc. I strived to fit as many accomplishes as I could onto my resumé. I won't be able to run Varsity Cross Country or Track, or be onstage with the school musical. I didn't expect a prescription for a wheelchair before I could work enough to buy a car of my own. I do feel like I'm missing out. I can't even go out to eat with friends without accommodating for my health! But I am extremely thankful for my youth, however limited I may feel. Now, I don't worry so much about my future. I appreciate what I have in front of me. I have the best family and friends I could ever ask for. I have faith in God, and I have faith in myself. My body's been hijacked from me. This disease has control over my body, but I refuse to let it take my faith or my optimism. God has a plan, sometimes regardless of what we want. The unexpected happens, and we're reminded we're not in control. But, maybe that's a good thing.

Thursday, June 30, 2011


I have been blessed with the best family EVER. I'm especially thankful for my close friendships with my cousins. We joke that we're together by default, but I really enjoy their company! We don't get a choice of what we're born into, or how we're brought up, but I'd choose my family over anything.
While family was in town, we decided we wanted to go to the Newport Aquarium. Even before I opened my eyes that morning we had planned to go, I knew it was one of "those days". I was upset. I decided not to join them because of the pain and numbness from my legs. It's like standing in fire... it feels like the flames are licking my calves and the stinging sensations are shooting up over my knees and thighs. My legs might swell, twitch, shake, or just completely give out from under me. Do you know the feeling when your legs "fall asleep"? I know they're still attached, but I can't shake them back "awake".  It's like they've been filled with sand. It's similar to the feelings I had after finishing my first half-marathon last year, but it's beyond just weakness or being tired. So that morning, as I was resting in bed, I started getting really upset. I wanted to go see the aquarium and, more importantly, spend time with my family. I was furious. I wasn't going to lay in bed all day and feel sorry for myself. I wasn't going to waste another day. The pain wasn't even my biggest obstacle... it was my ego. If I wanted to go to the aquarium, I was going to have to use a wheel-chair.
I suppose anyone could just wheel around all day, but I actually needed this assistance. It was a humbling experience. People looked at me. I smiled back at their questioning and curious glances. I'm sure they wondered why I was being pushed around.. I had to use the special doors and sometimes couldn't even see all the exhibits. After I got over my embarrassment, I had a great time! I really enjoyed myself and everyone I was with. The pain and numbing sensations were significantly decreased, and I could keep up with them as we made our way through the aquarium! I just know that wouldn't have been possible without the wheel-chair.
I pride myself in the fact that I can push through the daily pains, so it was truly hard to accept the fact that I couldn't depend on my legs that day. These symptoms are newer and may be caused by a condition called "Peripheral Neuropathy". I'm thankfully not bound to a wheel-chair full-time, but I understand I may need one more and more in the future to do the activities I want to.
I am concerned about my future. Walking is such a simple thing I took for granted. How am I supposed to walk to class everyday at a campus far from home? My house isn't handicapped accessible, but at least at home I don't get funny looks when I have to rest at the top of the stairs I just crawled up.
I'm learning to worry less about my pride and try not to look at my situation as just being "high-maintenance". I know it takes more courage from me to ask for assistance.
I'm so thankful I got to go to Newport! I love the ocean. I love water sports. I love swimming! Unfortunately, I can't lifeguard or swim anymore. Ever since watching my favorite disney movie, visiting an aquarium is the only thing closest to becoming a mermaid princess I can get!
Another one of my favorite memories is when I snorkeled in the Caribbean. I got to swim with some of the most beautiful and colorful creatures I've ever seen. It was a magical experience that I'll never forget! But I couldn't breathe under water without a snorkel, and I couldn't have seen them without some goggles. So while it may require some tools of assistance to make make up for the things that have been taken away from me, it's these challenges that make me appreciate life so much more. Every pill, injection, treatment, wheel-chair, etc are all worth it. It's like when you jump into the deep-end, and you sink all the way to the bottom. The further down you are, the harder it is to swim back up again. You've made this journey to the surface a million times before, but it still makes you anxious as you kick back up to the surface. You have no choice but to keep swimming, your eyes on the sunlight above. After every challenge I overcome, it's like that relieving feeling you get when you take that first giant gulp of air at the top of the water.
It's a beautiful life, and if I need some physical help along the way, so be it. I at least hope I learn enough to pass on my own assistance to another.
"Now I know there's much more dignity in defeat than in the brightest victory."


Hummingbirds are glorious, tiny balls of excitement! They are so much fun to watch. After HOBY, I had Hummingbirds - The Benefit Show. I was very caught up in the craziness of HOBY before, during, and after. I really did very little to help plan this wonderful fundraiser, but I was so thankful to be apart of it!
I first met the man responsible for Hummingbirds, Christian Stargell, through Dayton Philharmonic Youth Orchestra, and he has turned out to be a wonderful, selfless, and generous friend. He took the initiative to plan everything! It truly exceeded all of my expectations! I look forward to working with him again in the future.
It was such a beautiful night! On June 24, at the Cannery Art and Design Center, about 200 people came together to raise money and awareness for ME/CFS, The Seedling Foundation in support of the arts program at Stivers School for the Arts, and to help Christian afford his summer music study in his pursuit of a professional music career.
I was beyond impressed with all the performers, artists, and supporters. The Stivers students and others who donated their talents really touched me. It meant so much that all these people were so willing to benefit others. Many had never met me in their life prior to the show, and they gave more than just their time that night- they truly gave me hope and inspiration! Awareness is so important to me. I feel we really made a difference that night. I'm only one of many who are dealing with this same disease, but I  doubt any other patient has the support like I do.
I had a blast. It was truly a very fun and enjoyable evening! It was physically and emotionally exhausting, but Hummingbirds is something I will never forget. Thank you for everyone who came out in support and for all of those who were involved.
I think hummingbirds are a great symbol for those dealing with this disease. Many were extremely active before falling ill, and like hummingbirds, they must fight to stay flying.

Hummingbird, bird of beauty
Glorious green, purple, and yellow
You don't sing a lot, but you don't need to
Hummingbird, struggling to stay in the air
With all your might, Fight! Hummingbird, fight!
Little Hummingbird, You are the mightiest
You are like a cloud in the sky
But you are not alone, I am here
Drink the nectar of flowers, gain your strength, fly high!
Hummingbird, people stop and stare, they say, "Oh it's so beautiful"
Hummingbird, buzzing around, You are my focus
Christian Stargell

Sunday, June 26, 2011


For the first time in a very long while, I was actually caught up in LIFE. I've been wonderfully busy, and more importantly... I've been able to (mostly) keep up! While my activities and health aren't even close to being back to "normal", I've been so happy to be involved again. Most of this is because of a new medicine I've started! At the beginning of June, I went to the cardiologist for the first time. She was FANTASTIC. It's always such a struggle to go to a new doctor. They usually don't understand or don't have any clue where to start with me medically. It's even worse when you see a specialist... they only know their areas of study, and it can be difficult to try and get them to see the big picture. I was very reluctant to go to this specialist at first. There are definitely barriers of communication; I explain my entire medical history to the nurse, she passes it on to the attendants or interns, and then it gets to the doctor. I could tell that the attendant had walked in with a mind set of my condition already, I just assumed the doctor would feel the same. I assumed wrong! She was willing to work with us... I was beyond relieved. Because ME/CFS is such a complex "umbrella" disease, I've also developed Postural Orthostatic Tachycardia Syndrome (POTS). This itself may be responsible for a lot of the fatigue, dizziness, fainting, headaches, etc. While she was hesitant to prescribe a potentially risky medicine for treatment of POTS after only one visit, she respected our research and background prior to visiting her, and decided it would benefit me to start this new treatment. With this new medicine, I have improved significantly! Finally, medicine is on my side. Not only was she so cooperative, she came in privately after our visit and shared with me that she too had been sick like me for years. It was so inspiring to see a successful, working, and strong woman with ME/CFS, EBV, Celiac, and POTS! I plan to follow similar footsteps someday...
On the 12th, I turned 17. My mom had an adventure trying to find ingredients for a chocolate dairy-free, gluten-free birthday cake. She's awesome, and so was the cake! Although, my adapted taste-buds may be a little biased...
Besides celebrating my birthday, I was preparing for HOBY!
HOBY stands for Hugh O'Brian Youth Leadership. Check out or Last year, I had the opportunity to go to HOBY as a sophomore ambassador for my school. That first four day seminar was a very unique experience... to say the least. It was completely eye-opening and inspiring! I love what HOBY stands for and I hope to continue supporting this great organization for the rest of my life. A blog post can never ever do it justice. I really believe in HOBY's mission. This year, I returned as a volunteer. For once, I was useful again. I was able to accomplish many projects before, during, and after the seminar! I didn't necessarily expect the mental rejuvination this time around. I was mostly behind the scenes for the seminar, but I was able to sit down for one speaker, Jenny Buser.
She's one of those people who you can just see the light of God shining through. Because of her wonderful, selfless, and truly genuine personality, she easily touches people. Jenny returned to this year's seminar without any notecards for her speech (as usual). She had us all very casually sit on the floor in front of her. Jenny opened with a prayer, asking for God to speak through her. She touched on the subject of molestation, which she had experienced as a young child. While I was not able to relate with some of her trials in her life so far, she really touched me when she spoke of the importance of angels in our life. Her motto was "...and you learn to laugh". At the end, she sang "Angels Among Us". This older woman caused an unexpected flood of tears. I can't remember ever breaking down in the past 7 months... but I really just let go. So many emotional teenagers and adults came up to her after and thanked her... I know Jenny knew nothing about my life and my struggles prior to coming to the seminar, and she was still able to break through my barrier I had built to defend myself from any emotional weakness. I am even more thankful for my good friends at HOBY who were able to truly comfort me. Thank you for those who didn't ask, and didn't treat me like the sick girl. Thank you for those who went out of their way to make sure I was okay, and allowed me to vent a little (or a lot). HOBY brought some really remarkable people into my life. HOBY, and all my good friends involved, really became such a life-saver for me. After my episode with the Ambien, I started to turn numb. I closed up defensively... HOBY not only gave me something to do, but sparked the fire back in me that I was missing. I am so very thankful! HOBY hugs to all of you angels! :) What a wonderful start to my summer. It seems sunshine, laughter, tears, family, friendship, and Florinef are the best medicine for me!

Wednesday, June 1, 2011

South Park.

South Park can be an extremely annoying show. The other day, I turned on the TV, and it was on the channel. But I didn't change it... thankfully.
The episode was about one of the characters falling sick. He was very upset because his friends were living successful lives, and he felt he was being punished. He came to a conclusion that God could not exist if his life was so unfair. His Jewish parents immediately tried to show him how important faith is in times of struggle. They pushed how we must always be thankful, no matter what. They explained to him the book of Job I.
The story of Job was one that I was not very familiar with. I knew the scripture, "The Lord giveth, and the Lord taketh away", but I didn't know they were related. Job was a very blessed and righteous man. He had all the riches he could ever want! He always lived for God and he always gave thanks to Him. One day, Satan challenged God over Job's integrity. Satan reasoned the only reason Job was such a faithful man was because God protected him from harm. God then removed his protection, and Satan destroyed everything Job had. Job's bountiful livestock and servants were murdered, and his beautiful family died in a collapse of his giant mansion. All in one day. At the end of that day, Job didn't curse God like Satan had hoped for. He didn't even ask "why?". Instead, he shaved his head, stripped himself of his robe, and bowed down before God in worship. Job said, "Naked came I out of my mother's womb, and naked shall I return there. The Lord gave, and the Lord has taken away; Blessed be the name of the Lord." (New Kings James Version)
I was in awe of Job and his faith. I know if that happened to me, I'd probably be a little upset. I was even more embarrassed that South Park taught me such an important lesson... I know that the book of Job, and the story of his unwavering faith and love for God is very inspiring for me! It just goes to show that God is always reaching out to us in ways we'd never expect. God has the best sense of humor ever.


Medicine is a practice. Practice often involves mistakes. As humans, mistakes are ultimately unavoidable. Drugs are made by humans. I found Ambien, a sleeping medication, to be one of these mistakes.
While my body may be inadequate on some levels, my thoughts and my mentality are so important to me. I want to be able to find peace within myself even when I'm surrounded by this chaos. M.E. is a neurological disease, too. The daily pain and struggles don't even compare to the struggles I have mentally. I'm almost embarrassed to admit that this may be affecting me cognitively. I took so much pride in the good grades that came naturally to me... It's hard for me to focus and concentrate now. Even with writing, I have to search longer than usual for the sentences that once flowed out of me. Granted, I have been out of school for nearly 6 months. I'm also taking a lot of medications with these continuous lists of side effects. But I get so embarrassed when I slip up. I usually just brush it off with a "I'm just a little out of it". Meanwhile, my mind is racing. Searching. Trying to find where I missed that piece of vital information. Nothing is more disheartening to me than when I can't find the source of the problem. Even with all the pains, I can at least explain them physiologically. I'm accepting of what life has played out for me, and I just focus on each day. I cling to every good moment I can, taking mental recordings to play them later when I'm feeling lost. This way of living seems so.. empty, sometimes. I wake up, and within a few moments, I may wish that it was the next day already. Sleep serves as not only a time for my body to heal itself, but as some peace of mind. I know when I wake, I'll have a fresh start. 
Insomnia is a very contradicting side effect of this disease. I go between sleeping hours and hours to just laying awake, twisting and turning out of discomfort. I feel tired most of the time, but it's more than just being "tired". I've had lead blankets put on top of me for MRIs, and CTs, and X-Rays. It sometimes feels like these blankets have taken a permanent cover over all my skin. Sleep is what I need. Sleep doesn't always come, and it doesn't always stay. Sleeping medications assure that I'll fall asleep quickly, and stay asleep, despite the aches and irritation. 
With my new sleeping medication, Ambien, I certainly fell asleep quickly. But with this drug, it only placed my body into a trance. Like hypnotizing. My mind was still conscious. It's very hard for me to describe the night terrors that overwhelmed me the following nights while on this medicine, and the ones that stayed around even when I stopped taking it. Without going into too much detail, it's understandably hard for anyone to shake that bad dream during the day. These terrors seemed to suck me in to their vivid moments of agony, torture, and despair completely. I was so terrified. I was afraid to sleep. I was afraid of my own mind. This drug cracked the strong barriers I used to protect myself from the expected emotions that come with any struggles we face. My mind, the very thing that kept me sane, turned on me. I had no control over those images and scenarios while I was asleep.
I noticed my Cleveland doctor was hesitant to prescribe me this medicine. I honestly didn't do a lot of research on it before I took it- it was FDA approved, and I was very eager to get a good night's sleep. I obviously missed the scary side effects... things besides just sending weird texts or rearranging the objects in my room while asleep. I understand that every drug has a different effect on each patient. I stopped taking this medication almost a week ago, and I'm still apprehensive for each night's "rest".
I haven't blogged in a while, simply because my mind was so chaotic. This situation is much more private to me than I'd normally feel comfortable sharing. I hope those reading understand my embarrassment, confusion, disappointment, and insecurity on this topic. Although, I have found that blogging about this seems to give me some distance from it. If I remove the fear of the situation even slightly, like by taking some courage to post about it, it will have less control over me. My mind serves as a safe place, a good place, despite it all.
Mistakes are meant to be learned from. I'll continue to preach to do research on your own health and medications, and to be an advocate for your own body. This idea of accepting and conquering what life throws at you is very, very hard sometimes. I'm healing slowly, filling in that crack. We're sensitive creatures. I always stress the importance of the angels in my life, but there also has to be some sense of independence and self-relience. My relationship with God (no matter how rocky it may be), with myself, and with those who support me help keep my peace of mind protected. It is well known how a very small thing can have such a huge impact on us. That goes for everything we do in life. Our words, our actions, our body language, and even our thoughts can make a difference- for better or for worse. The Ambien pill is not even the size of an M&M. I took a half a pill for only a few nights. It was so tiny, yet so destructive. 

Thursday, May 19, 2011


18 doctors in 6 months. No, seriously. Mom and I just counted them out on our fingers. 18 doctors in 6 months. Sounds like the title to a terrible book I would wouldn't want to read.. Chapter 1: Life as an insane Hypochondriac. Okay, I'm not a hypochondriac, and I'm working on the insanity thing... but I am conscientious about my health. Wouldn't you be in my position? I'm going to use all the gluten-free hand sanitizer I want! Yes, some hand sanitizers have gluten in them.. I just know that every germ has the potential to break me down. Let me know if you find a bubble I can borrow!
Being in the hospital, I was surrounded by some of the most careless and ignorant doctors I've encountered. I was put on display like some freak-show, and they all had turns sticking their fingers in the cage. It was honestly very rough. It's very scary to not know what's wrong. When we feel insecure, it's easy to become upset. But this disease's mysterious and un-familiar ways pushed us to find some relief. Every let-down discouraged me, but my parents never stopped searching. They never gave up hope.
Today, I met a new doctor out in the-middle-of-no-where Ohio.. At first, I was skeptical. "Quaint" and "homey" could be used to describe this setting. The nurses were friendly, but they were also active listeners. Most of the workers I meet in health care want to squeeze my cheeks when I start explaining to them my medical journey accurately... "Can't believe such a pretty young thing would know such big words!" ugh. Seriously, I'm going to educate myself. Of course I know the names of all the drugs I'm putting into me. And I've HAD a non-invasive, laproscopic partial splenectomy and removal of a non-malignant, benign splenic cyst. I should know what that medical "jargon" means. But today, I wasn't talked down to. This doctor was not only personable, but educated! I'm very optimistic for his new methods of treating me! While they're using supplements like Cleveland, he can do more than just defense and maintenance. I know that I'll get worse before I get better, but I am hopeful I can eventually get better!
I feel like I mostly write when something is nagging at me or upsets me, but I am extremely pleased with today! It was tough to wake up, but I managed to get in the car. And the car ride was almost 3 hours shorter than the one to Cleveland yesterday. And we found a health food store so I could get something to eat (this pomegranate/blueberry juice is fantastic). And it's not even that bright out with the rain! 
18 doctors in 6 months. Phew. Ohio's doctors, meet Ohio's weather. You two will get along nicely. 

Wednesday, May 18, 2011

On a scale of 1-10...

I hate the 1-10 scale. Now, I do think I've got more of an engineer's or scientist's thought process; I analyze situations based on logic, I like things in spread sheets, and the only creativity I have comes out through another instrument... But on a scale of 1-10? I'd prefer colors. Or fruit. Or weather. If you've ever been to the hospital or doctors, you know what I'm talking about. "What's your pain on a scale of 1-10?" "Does THIS hurt?" You know what doc, if I pushed on your gut it'd probably hurt, too. I feel like I complain a lot. Sorry, my ridiculous emotions don't help!
Ugh, emotions. Every time I see my doctor in Cleveland, I have to fill out a paper beforehand keeping track of my symptoms based on a 1-10 scale of frequency and severity. Out of all of them, the cognitive and emotional sections bother me the most. Maybe it's just an ego issue. I hate to let this get in my head too much. I feel like that would be the ultimate defeat. Before this, I thought I'd be the last person to ever experience depression or anxiety. Honestly, I would even think of that as a sign of weakness. Like addicts who damage their body... They had to take that first step. I know there is some psychoanalytical shenanigans and predispositions in the chemical make-ups in their brain and such, and I'm sure addicts' lives probably suck worse than mine. I'm in absolutely no position to judge, but I'm just being honest with my thoughts. I had no choice. I had no say. I can't even tell you what exactly caused this! It's one of my worst fears to ultimately lose control- physically or emotionally. I keep reading about the emotional turmoil that patients like me should be going through, but I truthfully don't experience that.  I don't believe that credit can go to me.
I am so beyond thankful everyday for the people I have in my life. The conversations I've had with patients like me have been so mind-boggling sometimes. One tried hiding this disease from everyone, including her family! I can't imagine doing this on my own. But I have almost expected doctors to have no clue what's wrong with me. Every other patient I've met has been to a ridiculous amount of doctors like I have. While I've made a few friends with ME/CFS through the clinic, my healthy supporters try to understand and they help me so much. I feel like these angels make such a difference. Whether you're religious or not, I feel like you'd have to believe in something. Even when my brain is complete chaos and it feels like my body is spiraling ahead of me- I have to focus on something. Sometimes someone. Sometimes, all I can focus on is tomorrow. I can hope that tomorrow will be better. But the fact that I had no choice makes me believe that there has to be a reason, or this would just be a waste! 
While this is considered the lowest point of my young life so far, there have been many positives out of this situation. I've found out who my real friends are. I've deepened my relationships with some of those incredibly. I've met some wonderful and inspiring people. I really appreciate life and living so much more. I never thought I'd have to concentrate on getting my legs to climb a flight of stairs. I climbed those dam steps (pun slightly intended). When I got to the top, all I could do was cry. I wasn't even focused on my trembling legs, I just didn't feel trapped for once. I wasn't hooked up to a stupid machine, I wasn't swallowing or injecting medicine I have to plan my day around, I just did it. Now, the after effects were rough... But those moments like that are worth it. It's my relationships with others that make this so worth it. 
I now understand why they say laughter is the best medicine. I'll admit my humor can be a little bitter and sarcastic, and sometimes it's not that funny when I joke about my health... But it's just liberating to just laugh at the situation. Thank you for those who make me laugh and tolerate my sense of humor, because on a scale of 1-10, it's like a rotten tomato. 

Sunday, May 15, 2011


I've always admired ballet dancers. They have such an effortless sense of grace and poise. They're beautiful. I never did try ballet, and I gave up on gymnastics at an early age. It's safe to say I can be a little clumsy. I've wiped out on the stairs at my high-school, walked into walls I've been surrounded by my whole life, and tripped on invisible obstacles. One of the battles to stay optimistic is learning how to balance. Yes, some of this balance is literal. I have to be careful not to over exert myself. The spells of vertigo send the room spinning, and me toppling to the ground. Right now, I'm waiting for the next round of nausea to send me over to the bathroom. This feels like the first day of a long summer.
But I believe we, as humans, are more powerful than we think. We're stronger than we realize. Maybe it's just another humanistic theory, but it makes sense to me. Our minds are powerful and our wills are strong. I keep saying I have to "make a decision" everyday. That statement still holds true. Sometimes, I have to be more conscious about this choice of happiness. I've read that it takes years to learn to adapt to this disease. I'm still only looking at months. I've already accepted the fact that I might not ever feel the way I used to. I've already changed my everyday lifestyle and activities and hobbies to accommodate to my health. My body doesn't listen to my complaints anyways. Whining can even make me more aware of how crappy I'm feeling. But I'm very thankful for this mindset I have now. I know some my friends' brains turn to mush when I try to explain to them what's going on, or they feel uneasy with my lame jokes. But they still listen and continue their amazing support. I'm so appreciative when they share with me what they've learned about M.E/CFS! It makes me feel like they're truly trying to understand. I'm sure my parents are driven crazy when I don't want to talk about how I'm feeling. Sometimes I'd rather sit in silence than be surrounded by the familiar family chaos. And other times, I'd rather drown out the symptoms with company. So while some of this never ending struggle of stability is simply keeping my two feet on the ground, most of this battle of balance is in my head and the decisions I have to make.
If I push myself, is it worth the consequences? Balance. I won't let this stupid disease ultimately define me... but what am I supposed to do about this everyday? Balance. Where is my say in this? It's like a teeter-totter in my head. Or a pendulum swinging back and forth tracking this wasted time I'm spending in bed. The days and nights are long, but I feel the time slipping away from me. Fall disappeared into winter and somehow it's spring again.
What happens if I lose balance? I'll fall. Although I don't have a choice with this disease, I have a choice over how I react to it. I don't want to fall. Sometimes, I get pretty down with the thought that this isn't just a temporary situation... I know it can get much worse, too. I always lose the "what if" game in my head... so I usually refrain from playing it. I'm trying to become comfortable in everyday life with very un-comforting circumstances. Remaining in a state of equilibrium is hard when you've got seemingly inequalities from everyday life thrown at you, but it's not impossible. Life is still great. We're surrounded by amazing grace. I'm sooo much more appreciative of things now. Balance is in the details of the little things in life, too! I'm in such a beautiful mess. They call this the "invisible disease" for a reason. I hide it as best as I can. Not because I'm super strong or fearless, but because I'm actually trying to hide it from myself, too. I've got a lot of everyday symptoms that are becoming almost "normal" or expected! It's like, it's just me. It's just M.E. Again, with the balance. I wish I was naturally graceful. I'm sure every little girl wants to be a ballerina at some point. They move with such ease. And you know their breaking toes are being forcefully crushed into the ground, but their faces never show any pain.

Tuesday, May 10, 2011


Everyone loves food. As Americans, we can be a little obsessed with it. Eating becomes a hobby. But in reality, eating is a necessity. For me, eating is potentially a risk. Unfortunately, ME has its "bonuses" it likes to throw at me. One is an intolerance to gluten. Gluten is in wheat, barely, and rye... most of the foods we eat contain gluten. When this intolerance first hit me, I was living off of rice cakes. Thankfully, I now have more knowledge and access to groceries I can eat (and enjoy!).
My GI doctor skeptically asked me how I first "knew" I had this gluten-intolerance.  When I say it hit me, it hit me. It knocked the wind out of me. I woke up with a swollen and hard belly. And it hurt! Keep in mind my pain tolerance is pretty high these days. I had pain with my cysts. I've had three operations on my spleen to remove those cysts, and the pain that follows abdominal surgery has been compared to giving birth. Abdominal surgery HURT. I had to learn how to walk again after! Now, I get an IV once a week. At least one needle is shoved into my veins every week... Sometimes, it's more than once if I need blood-work or tests done. I do self injections every other day. I'm willingly stabbing myself in the thigh with a shot! Plus, I'm dealing with a chronic headache and sensitivity to light and sound and smells and blah. Sorry about this painful rant.. but when I thankfully went to the hospital for some relief for this reaction, I knew it was bad. I would rather have surgery again. Or another needle poked into me. Or stub my toe against a door way. Anyways, It was very frustrating to have a doctor look down on me and look past my conclusions. I told him my symptoms. I explained to him my own test of a handful of seemingly harmless Goldfish Crackers.. and the rough night that followed that experiment. After he so rudely dismissed my history, he then asked me to go back on a diet with gluten.
Besides the pain, there is a lengthy list of symptoms that occurs after I eat gluten, and more recently, dairy. It's all the lovely and embarrassing symptoms. I get sick to my stomach a lot. I become feverish. I can't go out to eat without being that high-maintenence salad girl. My stomach can be such an attention-whore...
This gluten intolerance is often referred to as Celiac's disease. If I eat gluten, it damages my intestines. It's an auto-immune response my body has developed from this disease. Besides staying away from gluten, I can't eat dairy or too much sugar. After I eat dairy, I become immediately and extremely nauseous. The sugar counter-acts my supplements I'm taking for daily energy.
So, I'm up right now with a knotted and painful stomach. I hate to complain so much when so many others are dealing with this same problem... Honestly, my attitude went a little sour when ME took away my favorite foods! It's easy to get frustrated when you lose control over your body, but I refuse to let a disease get in my head. I look at eating as somewhat of an adventure now! I meet interesting people in the health food stores, anyways. And if I get a reaction, I deal... by writing whiney posts (sorry). Tonight, my angels have again reached out. The pain passes away with the time. I'll hopefully get to bed here soon. When I wake, it's a new day. It's also ME/CFS awareness week. With awareness, comes a cure! And fewer ignorant doctors.

Thursday, May 5, 2011

Bright, Sunshiny Day.

Think about the last time the sun was in your eyes. Maybe it prevented you from seeing the road more clearly. Maybe you were just being dumb and seeing how long you could stare towards that big ball of fire. (that's dumb.) Well, the sun is in my eyes on the way there AND on the way back from Cleveland. Light sensitivity is a newly onset symptom for me. It's obnoxious. I love the sun! But it doesn't love my headaches. Then, every time we pass a tree or a building, and the sun is temporarily not in my sun-glass covered face, my eyes relax and they're completely caught off guard when the brightness reappears. You'd think they'd learn.. Sometimes I feel like I seriously can't catch a break.  
Even before I open my unexpecting eyes in the morning, it hits me. No, it doesn't just hit me, it attacks me. It's the ultimate "I don't want to get out of bed" realization. Some days are more challenging than others... today is one of those. After I become aware of how exhausted I still am, I'm overwhelmed by the headache. I've had thoughts of performing amateur surgery on my skull to remove pressure.. I mean, there's gotta be a tutorial on YouTube. So, I take a deep breath to take my focus away from my head, and my chest painfully tightens up- another reminder my heart likes to beat out of my chest, even if I'm lying still. That's frightening. I have to just reassure my self that it's just another symptom, and not a heart-attack My next thought is, "medicine". I know the orange bottle is across my room on the floor. The big, white, chalky pills will provide some relief for my pounding head. Then, I open my eyes.  As soon as my head leaves the pillow, I'm dizzy. Light-headed. Woozy. Whatever. I slowly get upright, and offer some few choice and sarcastic words up to God, mostly out of desperation. Today, I felt bad (mostly because I was still inspired from yesterday's post and the conversations that followed), and apologized. I asked for the strength to at least get out of bed and humor the day. It's almost like I could feel Him chuckling at my situation, not out of meanness, but more of an "oh, Sara" moment. Like, "oh, Sara, you're stronger than you think. Hello?? Do you forget who I am??" My feet are swollen due to more cardiovascular and circulation problems, and they're tender as they hit my carpet. I feel sweaty even though I have prickly chills all over. My annoyance from this uncomfortable feeling pushes me away from my bed and toward the pill bottle. I stand up on my wobbly knees and try to focus my eyes on that loudly orange bottle. It's so orange! Whyyyyyy do they make those things so brightly colored? It's like another sun in my eyes.. Bending down is just another obstacle. I've learned to just quickly scoop it up and then blink away the blackness that follows. Again, with the bottle.. They make them so difficult to open. Stupid bottle. After I desperately fuss, I wash down the two, disgusting pills with the cool water mom has already brought me- God Bless her. I don't remember at which stage in my challenge of a morning I asked her to bring me some. And so begins round 1 of medication. I take a lot of medicine for a lot of different things. As I'm writing this, I'm on my iPhone on the way to Cleveland- after the first round of medicine has kicked in. I'm obviously in much better spirits than I would be without it. 
Cleveland = "treatment". Treatment is in quotes because - to me - it's a joke. It's just a painful IV therapy of vitamins and junk to to help get me week to week. It's a long day in the car and a long hour or so in those gross chairs. So treatment isn't really treating anything. Everything I'm doing is defensive. Nothing is being done to cure me or really make me ultimately better. And gas-stations bathrooms disgust me. By now, my dad has already strategically mapped which ones are okay to stop at. Gas-station bathrooms are always sooo gross. And they're always wet. Like a sign is going to save you from slipping... Again with that stupid, loud, neon orange- but, I'd hate to be that stick figure on the "caution-wet" signs. He's got it worse than me.

Wednesday, May 4, 2011


My Papa once told me the best year of his life was the year he had cancer. This really caught me off guard- I mean, seriously!? He's had such a successful life and so many great accomplishments, and he picked cancer... One of what is seemingly the worst case scenario in anyone's life! My grandpa has always been such a humble servant of our Lord. His faith is so wonderful and strong! Papa says those hard times were just periods of growth. He described how our life has this unnecessary "static", and when hard-times force you to focus on simply surviving, you have no choice but to believe in and lean on the Lord. This statement has become a very vivd truth for me.
Hebrews 11:1 states, "Now faith is being sure of what we hope for and certain of what we do not see." I am certainly not a biblical scholar, but this is pretty powerful scripture to me. How can we be certain of what we do not see? Faith has become more than just a hobby or a religion, it's a life-line. I'm not a preacher, but I'll try to describe some of my journey as truthfully as I can. Christianity, at least to me, can often be sugar-coated. I know the accusation of being a "luke-warm Christian" is something I can be guilty for, as well. I've always been surrounded by God. I was brought up in the Catholic Church. Blessings were said before meals, and prayers before bed-time, but as I started to grow up, I started just going through the motions. Now, this was the time when I would shift uneasily in the pews and count down the minutes until mass was over... I still loved God, I was just younger and didn't realize how much I needed Him. I followed His commandments and I prayed daily, I just never listened to Him. I never payed much attention beyond my immediate needs. I was like every young child, I just believed what I was told.
When I began my Confirmation classes, I started really researching the Church. Confirmation is when I could make the independent choice to stay in the faith. I started asking questions. This was the time before going into 8th grade, and I began to think for myself. I wanted to serve our Lord more, and I wanted to be a true follower. I can thank my wonderful God-mother, Sue, for helping me on this journey. In my eyes, she is the ultimate Catholic! My Mom was equally as helpful to me! Her love for God is contagious. She never gives up on me. She is so supportive! My mom has been with me every step of the way. Both of these strong women inspired me to really take my faith seriously. My Confirmation couldn't have come at a better time. After I had been Confirmed, I was renewed with this fire for Christ! And at the end of that school year, I had my first surgery. 
With my surgeries, I really experienced this removal of "static". My recovery time served as time for prayer and meditation. I had complete faith in my surgeons. Although we didn't know why, we knew they could fix me. After I started getting back on my feet, my religion meant more. God became so much more real. 
Now, I'm knocked down again. Sometimes, that's completely literal. At first, I was so hurt. My thoughts were, "what did I do to deserve this?". I blocked Him out. I was furious and confused. My emotions drowned out any prayers... As a Christian, we feel this unrealistic pressure to be so perfect with unwavering faith, but I completely closed up. How could I believe in His "plans" for me if the very first obstacle became this inevitable suffering? Even as I pushed God away, He pulled me in closer. Even if my hands were steady and my eyes were dry, this would be so difficult to try to describe and explain right now. God has never failed to show himself to me. I chose to be bitter and close my heart to Him, and He continues to send me this army of angels. Life liberating, sanity saving, sunshine-pushing angels. Angels who keep me realistic and strong. Sometimes I feel soo lost. I feel devastated. In my worst moments of depression and desperation, someone has reached out to me. Saying I have the BEST friends in the world doesn't give them any justice. My head is swirling with their unending acts of selfless kindness. One million "thank-you"s couldn't even begin to express my gratitude. A blog post could never describe the importance of you angels. I've received endless cards and flowers and support, and I will forever be thankful. God tells us to love one another as He loves us, and I am constantly seeing His love through those He sends to me. I find it humorous that doctors are worried there is something wrong with me because I'm NOT depressed. They think with a chronic and debilitating illness, I should be long lost in an endless black hole... Well, I have God and His angels to credit for this phenomenon. 
Unfortunately, I don't think it's possible to express my gratitude. Thank you. Thank you for everything. This has been the lowest point of my short life so far, but I have never felt so loved and real. I wasn't even sure about this blog, but the feedback I have gotten has been incredible! Even as I've been sitting here trying to wrap my head around some explanatory descriptions as to what I'm feeling, I've had to just stop and be overwhelmed. Overwhelmed with thanksgiving, truly crying tears of joy. I'm so inspired. How could I ever accept defeat with such an awesome army behind me? Honestly, my relationship with God is still changing. It's rough. But it's there. It's real and true and powerful. I am hopeful for my future, and I am certain I won't ever be alone. My guardian angels keep watch over my mindset and heart. My angels are the silver linings in my crappy cloud of a situation. Even on my difficult and bad days, my angel never fails to show me the brightside. 

Monday, May 2, 2011

Beware/Be Aware.

I don't look sick. Often, I don't act it either. "I'm okay" or "I'm fine" are common responses of mine. It's easier for me to block out what I can of this disease than to focus on what's wrong with me. That's why it's also so hard for to write this post describing M.E. Everyone has a struggle they are forced to deal with everyday, mine just happens to be in the form of a mysterious disease. I never forget that it could be worse. I  try to forget how I used to feel and function, and I try not to obsess over the future. I'm forced to focus on now because I don't know what's going to happen tomorrow.
Most of what I'm going to try and explain is information I've easily accessed on the internet. Most of my doctors have been clueless with what to do with me or tell me. To these doctors, I'm just a case study. That has been one of the most frustrating parts of this journey. I've been written off, traded around, misdiagnosed and pushed aside more than any patient should be in the past few months. I'm so thankful my parents have done all the research they can to get some answers. It's easy to blindly trust someone such as a doctor, but I've learned that doctors are still human. Humans still make mistakes. The only trust is in my faith and in our healing Lord. I am not only a patient, but an advocate of my own health. It's a struggle to not become angry and bitter... I often wonder how some of these ignorant and closed minded idiots got through medical school! But pessimism towards doctors is pointless. M.E. is just now coming to the attention of medicine. I'm hopeful that it will become more understood. Just recently NIH (National Institutes of Health) did a 2-day seminar on M.E.! Coming up on May 11th, there will even be a day for lobbying in Washington D.C. for funding. It's exciting to know some progress is being made! I hope to someday help develop a cure, too.
There are many names for this. The most common is Myalgic Encephalomyelitis (ME) and Chronic Fatigue Syndrome (CFS). Although, the connotation with CFS is horrible. It's a lot more than just fatigue. It's often compared that this illness to fatigue is like what a match is to an atomic bomb! I've also found that while researching online, searching "CFS" does not go into as much depth as "M.E." information does. I've found that has a great deal of accurate information.
It seems that this disease has an endless and changing list of symptoms and side effects... I'm still very early in the stages of M.E. It's very complex and there are many factors and variables that come with each patient. It affects EVERY system in the body. It's brain damage. There is a malfunction in my DNA that welcomes the disease to take over. No one likes to feel sick, even with the basic flu. I feel sick everyday. It's a lot more than just daily pain and discomfort. When I wake up, I have to make the decision to push through this. At first, I would cry myself to sleep (if I could sleep at all), and cry myself awake every morning. I've come very far already to even talk about this openly, but it still scares me. I refuse to accept defeat, but I try to be realistic. I never know what's going to happen next. I have okay days and bad days. I have good moments when I'm surrounded by those I love. This disease can potentially take everything away from me- including my life.  They don't know how you get it, or how to treat it. It will never go away. They do know it's genetic. So, my children, if I can even have them, might get sick. My brother and sister are at a greater risk, too. Remember what I said about not obsessing over the future? That's a tough one.

Saturday, April 30, 2011


Exactly one year ago today, I ran my first half marathon. The expected April showers upgraded to a torrential downpour on all of us Flying Pig runners. Instead of attending prom as an enthusiastic sophomore, I drug myself out of bed to run, while my friends were just getting back in from their magical evenings. After about the 8th mile, I cried out to my running parter and my mom, "I've never ran this far in my life!" But I didn't stop. If you're a runner, it's easy to understand the description of this "wall" we all hit. It's a "make-it or break it" moment. The reward after pushing yourself beyond this mental limitation is immeasurable. My legs carried me the farthest I've ever traveled. I ran the entire way, through the heavy rain, blisters, and pains. I feel now that I took my legs for granted that morning, but I was so proud of myself for not letting any of those obstacles stop me. I just ran and ran and ran and ran. Eventually, I forgot that I was running. It was just this flowing stampede; I was surrounded by unstoppable athletes. Running became a natural necessity for me. It served as a time of solitude and stress relief. I felt invincible and strong traveling mile after mile. Now it's that time of year again, where the weather teases you and pulls you outside. Spring is so refreshing! It's a reminder that indecisive Ohio weather can actually accommodate to our happiness once in a while. The sunshine seems to open up our hearts and optimistic smiles that the cold winters freeze over. It's days like this where I'd do anything to lace up my shoes and run. Of course I'd whine and complain during those long and overheating practices, but I haven't ran in months. I wish I had the option of laziness... Now I have no choice. My body can't support the stress running brings on it. It's no longer a game of "mind over matter", for the matter is so unknown and powerful that I have no decision to make for myself. The body which supported me in everyday life stopped doing so. I was forced to withdraw out of my sports and exercise. I miss being a part of a running team and I miss the competition of the race, as well. A year later, it's prom night again. My beautiful friends came over to show me all their preparations for tonight. They looked absolutely radiant! I suppose as a teenage girl, who also helped to plan this prom night, should feel sorry that she can't attend. My disappointment is expected. But as I sit here surrounded by spring, I'm not sorry I'm missing out on the glamour and excitement; I would just do anything to have my legs support me they way they did again.

Friday, April 29, 2011


"It's Just M.E."
^ This is an example of my oh-so-original and clever humor... lame, I know.

M.E. stands for myalgic encephalomyelitis. (pronounced, "my-Al-jik en-SEF-uh-lo-MY-uh-Ly-tis")

This is more than just a crazy long name. It's a title, a burden, a curse; it's my disease. It's a battle every day to not let this ultimately define and defeat me. This is the sickness that turned my entire world upside down.

The URL for this blog is

"When I Ever Feel Better" is inspired from a song by Phoenix titled, "If I Ever Feel Better". I first heard this song in the car during the long drive home from my treatment in Cleveland. The lyrics are ridiculously relatable to how I've recently been feeling emotionally. I shared this song with my mom, and she corrected the "if" to "when". I'm beyond thankful for her unyielding optimism. (:

"They say an end can be a start
Feels like I've been buried yet I'm still alive
It's like a bad day that never ends
I feel the chaos around me
A thing I don't try to deny
I'd better learn to accept that
There are things in my life that I can't control"

Way Back When...

While trying to get over this uncomfortable and inconvenient emotional barrier between my feelings and my laptop.. I'm going to start with the basics.
My name is Sara. I'm 16 years old. 16 is the year of great change, right? I found so much more freedom when I got my license! This past summer was my 16th birthday. Until then, I had always been somewhat of an awkward oddball. Yes, everyone has that "phase".. but mine lasted a long while, complete with tube-socks. Super nerd is putting it lightly. Teachers loved me. I got the goofy awards for being a good student, and I was always nice to everyone... that was just how I was raised. Starting the end of my awkward middle school years, there became this pain in my side. I continued to ignore it until it became scarily unbearable. My proactive parents immediately sent me to the best surgeon in the top hospital around. After many tests, they had found a cyst on my spleen. Surgery 1 was a success, and the pain went away. I started high school and immediately submerged myself in everything I could! Then, the mysterious pain came back. Surgery 2 was to hold me over until Christmas break- I refused to miss too much school for a silly thing like a splenic cyst. Finally, during Surgery 3 they took out half my spleen, along with the stubborn cyst. It was benign, which means it wasn't cancerous- it was just a random mutation. So I interpreted this as a sign from God to prepare myself for a career in the medical field. I recovered from the painful operations with a renewed excitement for high school. Actually, I was excited for preparing for after high school. I pushed myself and tried to build onto my impressive and lengthy resume, starting with my 4.0 GPA. I was so proud of my accomplishments! The longer my list of achievements got, the better I felt about myself. I enjoyed every activity I was involved in; I even welcomed the exhaustion from being so busy. I felt like I had purpose. My goals gave me something to look forward to always. I welcomed every academic challenge. I pursued prestigious musical opportunities. I ran long distance year round, and I participated in varsity sports when it was in season. I worked as a life-guard at the local pool, and as a waitress in a family-owned diner. My family and friends supported and encouraged me. I was thankful God had given me so many blessings and I wanted to use the talents He gave me to my fullest ability. Despite the tube-sock days, I was even voted onto homecoming court! I was euphoric and finally feeling confident in myself. I was so happy being in this constant state of motion. One friend even compared me to a hummingbird! I was naive, sometimes overly optimistic, and living the small-town dream. Until (you had to have known that word was coming..), one week in late November, I got sick.

Hello, Internet.

Well, this is my first "post" ever. I've always written stories... I enjoyed developing characters to my liking and I brought them to life on paper. Sometimes their scenarios paralleled my own, but I would make sure the scenes ended how I, the writer, wanted them. But this is so much more than fiction. It's so much more than any story. How can I define life with sentences tucked in between the covers of a dairy or on pages of the web? I'm feeling self-conscious about writing my own personal truths out on the internet. I guess I can look at this as just another journal.. although, I've often looked back at my own worn recollections of memories and grimaced at the scribbled thoughts.. I'm working on the self confidence thing. But it's hard to recognize myself these days. I've changed drastically in the past few months. I'm starting to re-define myself. Hopefully, this blog will be useful as not only an outlet, but as a way to reflect and connect with others who may be struggling with the same situations that I'm in. Writing allows me to give my never-ending, swirling thoughts some substance. Bare with me, I'm never one to write rough-drafts. I'd hate to be criticized on a mere form of expression, either. I'm learning to just go with the flow.