Category Archives: Living with Illness

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Letter to my Past Self

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Dear Summer,

Feel your body, your muscles. I don’t mean touch them. Just feel them, being there. They are so strong. They feel so right– so comfortable and relaxed. One day, you will lose that feeling. Your body will be constantly tense and tremulous, and your muscles will constantly ache like you’ve just run a marathon. Your limbs won’t move the way you want them to. So feel them now. Your body is so at ease. Your strength and dexterity are such gifts.

Wiggle your fingers and toes. That feeling of control over your body will leave you soon. The fingers will move on their own, sometimes, and sometimes, they won’t even be able to grip a pencil. It sounds strange, I know. You don’t have to believe me. You’ll feel it soon enough.

Stand up and walk. You are not dizzy. You are stable and poised. Your legs make strong foundations. There will be days when you cannot walk at all. When you stand, you will grow dizzy, your eyes will become dark, and you will fall. You are strong now, and you will be strong then. Remember this.
Go for long walks, whenever you can. Always take the scenic route. People watch. Crunch the fallen leaves beneath your feet. It sounds clichéd, I know, but you will not always notice these things, or perceive them as you do now. Pain colors leaves gray, and makes walking a struggle.

Stop for a latte, with real milk. Buy a croissant with it. You love them both, and soon, they will make your stomach turn. Everything will make you nauseated. Things that everyone else eats regularly will make you violently ill. Everyone will tell you it’s because you have an eating disorder.

Stay out late. Refuse to have a strict schedule. Instead, have things to do and people to see. Study sometimes. Sit in class and love learning. Then go out. Love your friends– do fun and stupid things with them. One day, you will have little energy or focus for these things. Anxiety will prevent you from leaving the house, at all.

You love school. Notice how much passion you have for education. Don’t let it leave, even when your abilities become compromised. Life will try to rip that passion from your weak, battered hands. Don’t let it. Learning gives you purpose.

Listen to good music. Drink good beer. When you’re sick, your headaches will warrant silence, and beer will become nauseous to you.

Notice how clear-headed you are. You can read and write for hours. Soon, it will feel like a concrete wall sits in your head, separating you from your thoughts. When you reach them, they are cloudy and unformed.

Stop scolding yourself for how much you’re working, how intensely you’re studying. You are not lazy. You are not stupid. Your time and your experiences are precious. You are forgetting to enjoy the gifts around you because you are busy twisting them into responsibilities, and check-marks on a calendar. The calendar is unimportant. Time is fleeting. Your life is already full.

Stroke your hair. It is healthy and thick. Soon, it will begin to fall out. You will look in the mirror and cry, telling yourself you’ve lost the last part of your appearance you took pride in, the last part of you that didn’t look shriveled and sick.

One morning, you will black out completely, and fall into the wall in your bedroom. You go to the doctor, and she tells you it’s stress. It’s not stress. Don’t listen.
Your arms and legs are weaker now. You have to park closer to buildings. When you come home from work, you sit in your car for a while, because you can’t imagine having the strength to walk to the front door. Don’t lose hope yet. Hold fast to the strength and dexterity you still have. It will be even further diminished.

You’re dizzy all the time, now. That episode where you blacked out happens every day. Your stomach hurts all the time, too. You can’t focus in class. Your muscles cramp up so badly you have to lie in a fetal position for hours at a time. You feel like a zombie. Food makes you vomit and gives you migraines. You have little energy, but you can still sleep. Soon, you will have insomnia, too.
You are scared. You think you have MS or Lupus, or even cancer. Something is terribly wrong, and the doctors won’t listen to you. You go to a new clinic and they tell you to stop eating wheat and get more rest. You are a young girl with emotional problems. You are not sick. Remember, Summer, you are okay. The doctors are wrong. You are strong and smart.

You think everything is gone, your life is all wrong. It’s not. Love everything you loved before. Keep living. Reach out. Don’t hide. This is not your fault. Remember, Summer, you are okay. You are strong and smart.

Don’t pity yourself, and don’t ask for pity. Notice the “disabled” people around you, and commend them for how strong they are. Think about how sad it is that all the healthy people are so oblivious of their able-bodied privilege– hope that they savor some of the beauty. Your eyes have been opened. Things you thought belonged to you were never really yours, and now you hold fast to all the fleeting gifts coming into your little world. Be grateful. Those gifts may stay, or they may go.

Always write. Always smell the coffee. Always pet the dogs.

Love,
Summer

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Recovery

I am in recovery. I’ve finally learned that recovery has very little to do with everything I’ve been taught with which to equate it. Recovery is not prescribed therapy, diagnosis, food, or drugs. It has to do with the absence of those things, but also the presence of them, all together– pieces of a contentedly imperfect whole. Recovery has to do with my ability to acknowledge those elements of my life, then place my focus elsewhere. My freedom comes from a lack of obsession toward any one of these so-called “cures”. My happiness comes from my aptitude for life alongside, but not compromised by illness.

I take minimal medication. Two drugs help make my symptoms bearable, and neither are addictive or have dangerous side effects. I don’t expect to find a miracle drug that will solve all of my problems, nor do I rely on the comforts of antidepressants or pain killers. I don’t find the need to numb myself to make life bearable. I no longer assume that I need a diagnosis to make progress in treating or accepting my situation. A label would make my illness understandable to the rest of the world– not to me. I no longer dwell on what I can and cannot consume. Usually I eat for health, sometimes I eat for enjoyment, and both are okay. I no longer waste my time with restrictive therapy diets. I now eat, and move on, with or without pain or other symptoms.

My illness is restrictive, but it doesn’t eliminate all opportunities for enjoyment and fulfillment My limitations determine the ways in which I act and experience life, but they don’t prevent me from finding ways to do so anyway. Once I realized this, my life took a huge turn. I no longer need to focus on fighting my illness before I return to life. I was spending so much time fighting my demons, I didn’t have the awareness to realize I was actually worshiping them. Now, my obstacles move with me, and I with them. I accept them, and continue to live and learn.

Lastly, I don’t think I will ever be recovered, nor do I need to be. My recovery will be a lifelong process, and my illness may or may not ever leave or subside. However, the world has too many beautiful things to offer for me to lose myself in negativity.

Illness is still difficult to cope with. I still have bad days– that’s okay. My symptoms are not optional. My suffering is. True suffering comes from my interpretation of my circumstances. I can easily chose not to harbor resentment, not to feel hopeless, and not to blame myself or anyone else. Instead, I choose to appreciate my challenges, and continue to love the life I’ve been gifted.

Friends are the best medicine.
Friends are the best medicine.
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Turning over A New Leaf– Dealing with Trauma

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Your society preaches self-deprivation and excessive self-expectation- It tells you to be strong and build “good” character. So you learn to worship self-control and discipline. You learn that you have to be the right kind of person and live the right kind of life. You’re supposed to be a hard worker. Sit down and shut up. Follow the social norms. Ignore your impulses. Then, you’ve reached your “goals.” You made yourself fit the box. If you’re a girl, you’re supposed to be thin, keep your mouth shut, don’t try to drive a big truck. If you’re a boy, you’re supposed to be stoic, be strong, yell when someone puts the sportsball in the sportsplace.

Then you go home and you’re left with the wrong parts of yourself. You see deficits that start to gnaw at your confidence and make you think you’re not enough– “I’m weak. I’m fat. I’m selfish. I’m stupid.” We tell ourselves constantly we’re beneath our own standards. These character flaws are our downfalls. They cannot be tolerated. We have to beat them into submission, discipline ourselves to hide them.

The standards and the distractions change and fade. And eventually we’re left with all of these “inadequacies”– The parts of ourselves that don’t fit. The parts that are too lazy, needy, inadequate, untrained. We’re left with run-down, misshapen vehicles that doesn’t seem to drive well on the roads where we drove before. And we have to find ways to make the vehicles work, to fuel them, and use them for what they are.

This post is about to get sad, and serious, and honest. I’ve recently accepted new truths about myself, and I want to be open about them. I want to be brave. I am brave, and talking about problems out loud helps us fear them less and move past them further. Soon, I’m going to tell you I’m still sick. I’m sicker than I was before. I’m also going to tell you I have an eating disorder. You read that correctly. I also have a cat. Either of those things could mean everything and nothing about me, depending on how you want to judge me.

When I came into the trauma of chronic illness, my imperfection became me. It felt like I had lost everything I liked about myself. The real me had disappeared, and I was left with an unusable shell. I disappeared. I stopped writing. I had nothing of value to say. I had no right to speak to the world. I was a “sick girl,” debilitated, unimportant, expendable.

I couldn’t overwork myself anymore. I wasn’t going to school, or headed to a noble profession. Illness was taking a toll on my body, and I wasn’t attractive enough anymore. I was too weak to decide how productive to be, or maintain an energetic and spunky personality all the time. I couldn’t earn my place in the world anymore, and I didn’t fit in the pretty box I was supposed to fit in, so I was nothing.

I thought the way to overcome the illness was to hide the undesirable qualities until I had enough strength to be the right person again. I would train my sick body to be strong again. I would use self-control and knowledge to discipline my body into healing. I would eat the right things, use the right supplements, change my lifestyle, study the necessary information. Then, I would be better. I would beat the illness. I would tease and train the lazy, useless body into something acceptable. Anyone who’s been through abuse or other trauma knows this thinking well. We blame ourselves and think we can make the terrible things smaller by over-controlling unrelated aspects of our lives.

Stop. There is nothing to overcome. You are not your trauma, or your flaws. I was never my illness. I was Summer, with an illness on the side. I was always a whole person. Without school, without my activity level, without my after-school jobs and volunteer work. And the sick Summer was not deficient. She was not unable. She didn’t need training, or lack discipline or strength. But every time I came home and felt weak and tired, I told myself I had to do something to fix it. I was being the wrong kind of sick person. If I were doing enough therapy, living correctly, acting the way I was supposed to, I would be this sick. Even after I found out that I had very real immune and neurological problems causing the symptoms, I told myself it had to be partly my fault that I wasn’t better off– I wasn’t “recovering.”

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Every time I got sick after a meal, I told myself I had eaten the wrong things and caused my symptoms. I tried elimination diet after elimination diet and got the same results. I became scared to eat, and I felt undeserving of food because I only deserved food if I could find out what sort of diet would heal me. A combination of my disordered thinking and digestive pain caused me to drop to 85 lbs. I was literally disappearing. I didn’t cause my digestive problems, but I made them much worse. And now, I had fewer abilities, so I deserved even less. I didn’t have enough self-control to heal myself. I couldn’t sleep. I couldn’t exercise, I couldn’t focus, I couldn’t calm down.

What I needed was nourishment. What I needed was acceptance. I needed to make space for myself in a world that always tells us we’re “less than.” I needed to fight the situation, not myself. Denial is not determination. I wasn’t being “stronger” than the illness. I saw doctors and took the drugs they told me to. I exhausted myself doing medical test after medical test. I had twenty vials of blood drawn twice weekly. I obsessively read chronic illness blogs and books and took the supplements they advocated. I did yoga and other “restorative” exercise that was supposed to make me better. But I hated myself and my illness. I must have been doing it all wrong because I was still sick. I still hurt. My muscles still didn’t work the same. I still had dizziness and brain fog.

I am still learning how to love myself. How to accept my life with illness. How to nourish instead of deprive myself. How to say
“I deserve to be here. Screw you pain. Screw you eating disorder. Screw you, self-blame! I’m going to have a life anyway!”
I’m still learning that I have things to contribute, even when I can’t be the picture-perfect girl I wanted to be. And most of all, I’m learning that being less “perfect” than I wanted to be may be even more of a gift.

But I’m back. I’m making space for myself. Just as we all should. I’m done lying to myself. I’m done hiding. I’m done accepting anything less than a full life, with bumpy edges and rocky roads. I’m done coming home and crying every night because my body didn’t work the way I wanted it to that day. Instead, I’ll make it a goal to throw a well-deserved (but succinct) fit, do some yoga, pour a glass of wine, and move on. I’ll stop being scared of everything I put in my body, and I’ll enjoy my morning coffee. I’ll eat more cupcakes. Because all the kale in the Northern Hemisphere hasn’t healed me yet. I’ll go for a walk when I want to, instead of when I feel like I “should.” And if I don’t do my “therapy” everyday, I won’t beat myself up about it. I’ll spend more time with my family. I’ll be more honest with my friends. Because I’ve wasted too much time being the “right kind” of sick person. I’ve wasted too much time hating myself for being a strong, able fighter. I’m done spending every minute fighting things I can’t control, and missing the things I should be celebrating.

Strength and Understanding Through the Storm

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Recently, I’ve gone through a really rough period in my life. I know– you would think that most of my dealing with chronic illness could be considered a “rough period.” I thought I’d gone through enough “rough periods” for a lifetime– that I’d hit rock bottom when I had to leave work and school, when I had to get my feeding tube, when I learned that there would be days I would wake up without the ability to walk. I thought I had passed life’s tests of strength, made it through my crucible. Until the past month, I had no idea what hardship was coming, or how many small comforts I still had.

Then the storm came. I moved from Dugway back to Salt Lake City– a welcome transition. However, a reasonable amount of stress on a healthy body is a stress overload for mine. The whole situation wreaked havoc on my muscles, compromised my motor skills, gave me constant headaches and weakness in my limbs. It also increased my digestive problems, so I ended up at my lowest weight yet, 89 lbs at 5’10”. My body was in constant fight-or-flight and extreme starvation. I didn’t know what to do, or whether I was going to make it. My doctors didn’t have any immediate answers, so I had to resort to my own knowledge and small amounts of self-soothing to make it through the move. Then, I went through a breakup with my boyfriend of three years. I’ve chosen not to make him a central part of this blog, but he was a huge part of my life for a long time, and losing him was confusing and hard.

It felt like my illness had taken everything from me. At this point, I was literally just surviving, not living, not feeling. There was so little left to hang on to.

But I’m still here. I’m still moving, living, growing. I’ve found that I have strength and persistence that I could never have comprehended before life demanded it of me. I’ve learned that I have to find gratitude for the small comforts in my life, because everything we take for granted is never really ours, and it disappears without warning. I now know that I can survive– that I can find strength when everything falls apart. For now, I’m living by my own strength and understanding, and I know that my illness cannot take those from me.

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Guest Post from Lemons ‘n Lyme: What it Means to be Young and Chronically Ill

Hello my divas (and whatever the male equivalent is)! Today’s post is going to be something a little different than your used to– it’s my first guest post! I’m thrilled to be introducing you to Victoria from Lemons ‘n Lyme. You should remember her blog from last week’s Friday Favorites. Lemons ‘n Lyme is full of a lot of good things, from an awesome paleo, anti-inflammatory recipe page to a lot of strong and inspirational thoughts from a chronically ill but determined little lady. I’m honored to have her appear on Sedentary Superwoman, and I know you’ll all love what she has to say.

Victoria: Hello lovely followers of Summer’s blog! I am so excited to be guest posting today. I am going to be talking about the social and emotional effects of having a chronic illness as a young person. This is a topic that has been on my mind a lot lately, so Summer’s timing in asking me to guest post was perfect.
First, let me start by introducing myself. I run a blog called Lemons ‘N Lyme which chronicles my experiences and treatment with chronic Lyme disease. I LOVE to experiment in the kitchen and I use my blog as a place to share the Lyme-friendly recipes I develop. I could spend a lot of time talking about my blog and diet but since that isn’t the topic today, feel free to check out my blog for more details about my story and for lots of yummy recipes!

As I said, the impact of having a chronic illness as a young person has been weighing heavily on my mind lately. After over 12 years of symptoms and 3.5 years of treatment, why wouldn’t it? When you have a chronic illness, your experiences and views of the world differ from those who are “healthy.” It can be very isolating, both emotionally and socially. You can’t participate in all of the activities your friends and family are participating in. You can’t eat all the same food or even indulge in just one little taste without paying some serious consequences. It really does take a toll on you after awhile.
I’m sure by now we are all familiar with the acronym FOMO, fear of missing out. I’m beyond that now, it’s FOF (fear of a flair) for me if I do participate. Your younger years are supposed to be about adventures, late nights, travelling, trying new things, and copious amounts of fun. You’re trying to find yourself, learn, and do some dumb stuff along the way ;). My version of all of that is very different from the average 20-year olds. Taking a risk means going out to dinner or staying up past 10. Fun constitutes leaving my couch to get a Redbox instead of sticking to the same old Netflix. Anyway, you get the idea. Those with a chronic illness are in a very different world. It isn’t easy, but you have to redefine what fun, adventure, and living means.

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Before I was diagnosed and I had no clue what was wrong with me, I tried my hardest to push through and ignore my symptoms. After all, I had been told I was making them up, my tests were clear, and nothing was wrong with me. I felt incredibly alone and depressed. “This can’t be how everyone feels all the time? I feel miserable!” I thought. Nobody could justify my symptoms or even begin to understand how I felt. Once I was finally diagnosed, I felt a sense of relief to have an answer, to know I wasn’t making things up, and to know that people would understand because my symptoms had a name.

This wasn’t exactly the case, though. Naming my illness did not make it any easier for people to understand what I dealt with. Trying to explain my symptoms couldn’t even begin to convey how I actually felt. There weren’t words for how exhausted I was and for how much pain I was in.

I ended up doing intensive treatment that involved antibiotics, herbs, and supplements that had to be perfectly timed around each other and around food. Then, IV antibiotics were added. This meant hooking myself up to an IV twice a day, every day, for 7 months. I couldn’t spend the night out on the town or go camping for the weekend because I had to be home for IV’s that needed to be exactly 12 hours apart.
It is hard for others to fully comprehend how chronic disease can make you feel because they have never experienced a chronic illness themselves. This can leave you feeling completely isolated. My friends could go swimming, hiking, and dancing and I had to be home by 7 to prep for an IV before falling asleep at 9. I can’t just grab a beer with a friend after work if I wanted too. I can’t have the girls over to bake cookies and binge on ice cream while watching chick flicks for a night. I can’t pick up and leave for a weekend adventure because if I don’t stick to my treatment regimen, I’ll pay the consequences. Nothing can be last minute, every event must be planned out so I can rest in preparation, designate recovery days after, and pack all of my supplements, medications, and Victoria-approved food.
This can be very emotionally isolating, as well, since people can’t fully comprehend why you need to eat a certain way or forgo an invitation out. It is emotionally challenging to cope with constant symptoms, too. A break for just one day would be nice! The emotional toll that chronic illness has can make it very easy to fall into a rut that seems impossible to climb out of. But that is when it is important to develop coping mechanisms and learn to find joy in what you can do. This takes time and experience to figure out what can make you happy and how to deal with the bad days.

I’ve found art therapy to be very anxiety reducing and a way to detach from a bad day. I love to cook, so when I have the energy to develop recipes, I immerse myself in the kitchen. Even though I can’t always spend time with them, I have some amazing friends who I can call, either to vent to or to help get my mind off my current situation. I’ve also connected with many other chronic illness warriors out there and I’m able to email, text, and talk with them about our experiences. This makes me feel less alone and as if I’m missing out. We share similar inabilities to socialize like “normal” people, but can connect on that level and socialize with each other from the comfort of our own couches.

It’s a challenging journey we are travelling through every day and it’s even more challenging for those around us to understand our world. If you are a fellow spoonie, I’m sure you can relate to what I’ve written, and if you’re a friend or relative of someone who suffers from a chronic illness then I hope this post helps you understand, even just a little bit.

Friday Favorites #3

Happy Friday, all. Welcome to Friday Favorites #3.

Aloe Vera for Acid Reflux

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I have just about every digestive problem you’ve ever heard of…all camped out in one body. I’m a lucky gal. That includes the more common symptom you’ve probably experienced– acid reflux. When GERD, or acid reflux symptoms get more extreme, they can completely alter appetite, activity levels, mood, and general quality of life. When I get a bad acid reflux attack, it even affects my breathing. My doctors’ first instinct was to put me on Proton Pump Inhibitors (like Zantac) which lead to nutrient deficiencies over time, and can lead to even more volatile acid production. Aloe Vera is a natural and safe alternative, and it works about 100 times better for me than prescription antacids. I take this brand, which has no taste. Since I started drinking aloe, My symptoms are much less frequent, and only about half as severe as they were before.

Lemons ‘n Lyme Blog

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Victoria, from Lemons ‘n Lyme was diagnosed with chronic Lyme Disease in college. She’s been on multiple antibiotic treatments, and followed her own anti-inflammatory protocols for years. She also follows the AIP (diet), which you’ll recognize from some of my posts, and has recently begun to treat SIBO. She is a Certified Personal Trainer, which means she managed to make it through college with chronic illness (wow!). This girl refuses to be victimized by her limitations, and her blog offers a lot of personality and insight. Victoria will be guest blogging on Sedentary Superwoman next week, so keep your eyes open.

Mango Cucumber Salsa

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Noms! I’ve been eating this stuff on everything: coconut oil chips, fish, veggies, ice cream… I kid. But really, go make this. It’s delicious. If spicy is your thing, add some jalapeño. My stomach would hate me if I did that, but it sounds delicious.

Ingredients:
1 mango
1/2 medium cucumber
1 bell pepper
1 handful fresh cilantro
1/4 red onion

Combine ingredients in blender or food processor and pulse until finely chopped. Of course, you could also do the old school thing and chop with a knife.


Of Monsters and Men Beneath the Skin

This album isn’t really new anymore, but if you haven’t hopped on the Beneath the Skin bandwagon yet, do it! I love these Icelandic weirdos, and I think this album is better than their first. It’s a little more introspective, and a little less myth/storytelling than My Head is an Animal. My favorite song is “Wolves Without Teeth.” The whole album is awesome, though. These guys are really good with cryptic metaphors and catchy melodies.

This Book: Aaron Lynch’s Though Contagion

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This book is pretty incredible, so far. It’s based on the science of memetics, which is a newer realm of thought, developed by scientist Richard Dawkins. Memetics focuses on outlining the patterns and spread of human behavior. It’s sort of like an evolutionary exploration of thought. It was really interesting to see the science applied to religion and gender roles, especially. It’s hard to explore those fields without bias, but Lynch’s theories are fairly neutral and really fascinating.

My blogging assistant wishes you all a wonderful weekend!
My super trusty and adorable blogging assistant wishes you all a wonderful weekend!
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Everything Happens for a Reason…But Not Really

This is going to be sort of a heavy post. But first, I want to share one of my favorite birthday gifts– my super cool new yoga sweatshirt. Thanks, Ina!

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Okay, now onto the guts of today’s post.

I’ve spoken to multiple people recently who’ve been in situations of trauma or suffering, and have explained to me that they comfort themselves by remembering that “everything happens for a reason.” That statement has never been comforting to me, and, in some ways, it’s even frustrating. It’s empty and convoluted, and it communicates a hopeless and complacent way of looking at negativity in our lives.

When trauma or suffering happens in our lives, we look to make sense of the things which are ailing us. “Everything happens for a reason” is a way to comfort ourselves– a way to get a partial grasp on something confusing and seemingly intangible. In my experience, placing this sort of “purpose” can distort our views and take us even farther on the truth. Here’s why:

“Everything happens for a reason” can be interpreted two ways: the “reason” is either external, suggesting that some all-powerful force is behind our suffering, or the “reason” is internal, meaning we believe we are the sources of our own suffering. If you believe some divine/otherworldly being is behind your suffering, you create the illusion that you are powerless in your own situation, and that the force in control in your life wishes you harm. Is there really a cruel god, or even a cruel universe, puppeteering us– causing young mothers to die of cancer, causing situations like mine, where we have to withdraw from happy lives for reasons of pain or trauma? I see this as extremely unlikely. When you hear hooves, you should think horses, not zebras or unicorns. The simplest answer is usually the right one. If you have cancer, it’s likely because a cancerous growth attacked your immune system and causes abnormal cell reproduction. It’s less likely that happened because the cruel god of cancer wanted to punish you for not spending more time with your family.

If we don’t externalize, we internalize– you tell yourself “I asked for the pain. It’s punishment for something I did wrong.” It’s natural to self-blame, especially in situations of illness or abuse. You think “I caused my symptoms because my lifestyle isn’t adequate. I stress too much, I don’t eat right or exercise enough, etc.” We look for the causes that are closest to our control– our own actions. It’s the clichéd abusive relationship scheme, where the victim of abuse blames him/herself for warranting the abuse. Obsviously, this way of thinking is flawed, and not at all conducive to healing.

I don’t believe “everything happens for a reason” because of the fallacious perceptions this type of self-comfort causes. However, people are not created to be sick, or to suffer. Therefore, I do believe there is some reason at the center of the illness. The reason is the world, the abuse, the abuser, the strange elements of life that were twisted to send you into an unnatural and unpleasant situation. There is nothing comforting about the cause or reason for suffering. The true comfort comes from the outcome of the illness or ailment– the way you decide to continue, and the positivity and wisdon you’re able to gain from the situation. None of this is predestined or external. It’s all individual, and comes from your personal choices in handling your battle. You empower yourself through movement and self-confidence, not self-blame or hopelessness. So, yes, everything happens for a reason…but not really.

Source: Popsugar
Image Source: Popsugar
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Birthday Blues

Yesterday was my 22nd birthday. It was a hard day. Around a year ago, this time of year, my symptoms were starting to worsen. I was enrolling for school, but nervous about how much I was going to be able to handle. I had just finished my summer job, and was tired from my schedule, even though I was only working afternoons. I kept telling myself “this is temporary…it’s a fibromyalgia flare…it will go away and school will be just like it was last year.”

August 2014
August 2014

My symptoms kept getting worse, and the life I’d known before started to deteriorate. I could study for an exam all days, and be too weak the morning of the test to go to class. I kept making plans with friends and canceling because I didn’t have enough energy. I started spending more of my time seeing doctors and resting. I told myself “I’ll just take some time to figure out what’s wrong…by next year at this time, I’ll be recovering.” Of course, I had no idea if I’d actually be recovering, but it was comforting to think there would be an end to the symptoms and lack of control.

It’s been getting closer and closer to the “deadline” I set last August, and my symptoms have been getting worse. I feel like I have so few abilities, and I’m hitting a lot of dead ends in my medical tests. This week, pain and weakness were especially bad, and that sent me into a downward emotional spiral. It’s not fair that I couldn’t make plans for my birthday like a “normal” 22-year-old, it’s not fair that I can’t go back to school, it’s not fair that I’m always in pain and none of my doctors have any answers.

None of it is fair, and it’s not going to be fair. I can’t bargain with the illness, and I can’t decide that if I will things to change, they will actually change. I have limited choices, and I have to accept that for now. Happiness is mostly an internal state. I don’t think it goes entirely unmediated by external factors, but I think we’ll always wish for better circumstances no matter what our current situations are. So I decided to let myself be angry, and have a birthday in pain. I allowed the situation to be as it was. I still appreciated small things, and I grieved for the things I couldn’t have. I wasn’t able to have a big gathering, or go out with friends. I settled for a movie with my boyfriend, and even that was pretty exhausting for me. I still ended the day happier than I’d started it, and I think that’s a big step in healing.

Lesson learned: false deadlines for undesirable situations don’t help. They give us false hope, and good social defenses, but eventually, the scaffolding will start to fall, and we’ll have to reexamine everything we’d once considered comforting and true. Being honest and practical about pain or trauma is the only way to get through it. So, from now on, I’ll be honest with myself, and appreciate as much of my situation as I’m able. I’ll keep looking for answers, but I’ll stop feeding myself false comfort and motivation. I will be ambitious for healing with no pretense.

On a different note, my gastroenterologist has decided to start some new stomach medication, and my feeding tube is set to be moved the first week of September. I had some abnormal thyroid tests, so I started thyroid medication today. Finally, I have a referral to see a neurologist to explore some of my neuropathic pain symptoms, and get an MRI. Hopefully some of these new therapies will lead to new avenues for healing. Thank you, again, to those of you who provided the funding for my new tests and therapies. My research will keep me moving forward, and I plan to keep trying new strategies until I find more comfort in my mind and body.

Birthday Cake Image Source

Crowd Funding, Support, and a Lot of “Thank Yous”

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Two weeks ago, I was in a very rough place, mentally, physically, and emotionally. I felt so stuck– stuck financially, stuck physically, stuck in depression, literally stuck on my couch all the time. I was doing everything in my power to keep myself healthy and following all the advice of my doctors– STILL, I had so much pain all the time, I had no energy and no self-esteem. I didn’t have the money to progress with the medical tests recommended by new doctors, and I didn’t have the money to continue supporting the treatments I’ve already started. There were resources for healing just out of reach, but they would never be accessible to me. I keep opening the doors to new treatments, and they keep slamming shut before I’ve made it across the threshold. I spend resources on new tests that come back negative, and I’ve tried countless treatments that haven’t helped.

I blog bearing good news today. Under a week ago, I posted the story of my struggles with chronic illness on gofundme.com. In five days, I made over twice my original goal of $2,000 (some donated separately from gofundme). I am so, incredibly grateful to all the wonderful souls who offered their support and helped by donating, offering kind words, or sharing My campaign page. The amount of compassion I received was beyond amazing. Not only do I now have the resources to pursue adequate diagnosis and treatment, but I also have a huge community of supportive and understanding friends and family that I’d been taking for granted in my battle. We are rarely as alone as we think we are when we are faced with such trying situations.

Another thing my crowd fund helped with is social image, a constant struggle for the chronically ill. I’ve been sick for four years, and selectively hid my illness from friends and family because of my pride, as well as my fear of rejection. I am disabled, I can’t relate to people the way I used to, and I didn’t know how to explain it or whether I should hide it. Posting my story online and getting such a positive response was so uplifting. I no longer feel desperate or embarrassed about my lack of abilities. I no longer feel stuck. I am empowered, I am supported, and I am strong. Thank you, again, to everyone who participated in my gofundme campaign. I hope you recognize yourselves as the heroes you are.

In the next month, I plan to use funding for a hydrogen breath test for Small Intestinal Bacterial Overgrowth from Commonweath Laboratories. This is a disorder where bacteria migrate from the large intestine to the small intestine, causing intense abdominal pain, as well as food sensitivities. I also plan to get food sensitivity testing done by US BioTek Labs, Inc. I’ll post more details about these tests and my progress with diagnosis in the next few days. Please keep reading for updates on my recovery!

New Blog Direction and the Chronic Fatigue Community

I’ve decided to make a few changes to the blog. I’d like to become more a part of the Chronic Fatigue and Fibromyalgia awareness community on the web. I want to be more connected with my audience, and to start giving more practical advice and insight as to what remedies I’m trying, and to what knowledge I’ve gained from books, doctors, and other bloggers. I want the blog to start being an actual blog with a presence among the great interwebs, instead of just acting as a quiet outlet for me- a step above a journal.

I’ve been hesitant sharing my blog and gaining publicity because I’m unsure about my diagnosis, as well as the labels Chronic Fatigue and Fibromyalgia. I think they are blanket phrases that refer to a variety of symptoms, without considering their more specific lifestyle and infectious causes. In other words, I think there is a cause for my illness, such as bacterial or parasitic infection that was missed by Western medical testing. When my illness wasn’t explained by the standard list of tests, it was labeled “Chronic Fatigue” which basically means “I have the symptoms that anyone with a compromised immune system would have after such prolonged suffering.” “Fibromyalgia” is the intense muscle pain and weakness that often accompanies chronic fatigue.

My conclusion? I think there is more to learn, and more to fight for. I don’t accept Chronic Fatigue and Fibromyalgia as adequate explanation. However, I do think that having a vague diagnosis helps connect me to more information and other sufferers with similar symptoms. I also think that an online community is an effective design for channeling new information and positive resources among activists. My goal is for the blog to take some new steps in becoming part of such a community.

Greatest Wisdom