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.

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.

Hijacked.

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 http://forums.phoenixrising.me/content.php?147-Learning-CFS-the-Lerner-Antiviral-Treatment-Trial-Succeeds 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.

Underwater.

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."