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.