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! :)

30 Things About Me...

30 THINGS ABOUT MY INVISIBLE ILLNESS YOU MAY NOT KNOW

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. 

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.

Voices from the Shadows Documentary

http://mubi.com/films/voices-from-the-shadows

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 Facebook, Twitter, 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, http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory-written-by-christine-miserandino/

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.


THANK YOU, ANGELS! :)

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.