What I want you to know about living with fibromyalgia

What I Want You to Know is a series of reader submissions. It is an attempt to allow people to tell their personal stories, in the hopes of bringing greater compassion to the unique issues each of us face. If you would like to submit a story to this series, click here. Today’s guest post is by Emily McCallister

My name is Emily McCallister. I am 24 years old. I have lived with fibromyalgia for 10 years.

According to mayoclinic.com, fibromyalgia "is a disorder characterized by widespread musculoskeletal pain accompanied by fatigue, sleep, memory, and mood issues." The way I explain it when I'm in a good mood is that it feels like arthritis in my musicales. The way I explain it when I'm in a bad mood is that it feels like someone beat me with a club in my sleep.

Imagine, if you would, being 24 years old and feeling like you're 75. At 24, women are typically climbing the ladder in their chosen career, going on dates, attending happy hours with friends and colleagues, and traveling. Me? I'm lucky if I can pull myself out of bed in the morning. I wake up, and I immediately feel the sensation of exhaustion. Basically, I never (never ever ever) feel rested. Once I muster up the mental agility to convince myself to get out of bed and get ready for work, I slowly become aware of all the aches and pains. By the time I'm dressed and driving to work, I feel like I need a nap. Then, I sit in front of a computer all day where I become increasingly more aware of my aches and pains. By the time I get home at night, I can't muster the energy to meet friends for dinner or drinks. I'm having a good day if I take the time to cook dinner. I'm more likely to have a bowl of cereal. I usually lay down around 7:30 because I have no more energy. I fall asleep around 10, wake up at 6:30, and start all over again.

Can you fathom how depressing it all is? To feel sick 24/7? I carry the majority of my pain in my hips. It hurts to sit for extended ( less than 2 hours) periods of time. I prefer to be standing or laying. I endeavor to not let my condition impact my friendships or fun, but it of course does. I cry more than seems normal because I just want to be painfree.

The diagnosis of fibromyalgia comes through the non-diagnosis of other chronic illnesses (lupus, rheumatoid arthritis, Lyme disease, etc). Because there is no one test that conclusively proves fibromyalgia, there are many doctors who don't believe it is a real condition. They believe patients are fabricating the pain in search of validation and pain meds. Therefore, not only do I feel like an outsider because I can't participate in all I want to, I also feel like an outsider in the medical community. It takes more time than it ever should to find a doctor who not only believes the patient but who is also invested in the long process of finding the right medication to help. There is no one pill that eases fibromyalgia. What works for my mom (who has also had fibro since puberty), probably won't work for me. I am on my 10th new medication in 3 years. None have worked well enough to provide measurable relief.

There are women (and men, although it primarily affects women) all around you suffering. We are silent sufferers. You won't know, just by looking at us that we are feeling unimaginable pain. You're more likely to notice how sad we seem. How can you help? Listen! Provide a supportive ear when we need to vent about trying yet another new medicine. Try to be understanding when your coworker needs to work from home because she can 't afford the effort to get dressed. Be patient. It may be annoying to try to support her through this because it is slow. Take a moment to consider how exhausted she must be by how long this battle goes.

My doctor wrote a note for my job to give me the legal right to work from home as necessary. In that letter she said, "Fibromyalgia is a life-long condition." That was a strong blow to the ego. So, next time you encounter someone with fibromyalgia, consider that she is fighting a life long battle for her quality of life.

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Wednesday's Child: Makayla


Every Wednesday I feature a child recently highlighted by a local Wednesday's Child newscast to share the stories of children from around the country who are waiting for a family. My hope is that this can broaden exposure for the children highlighted, but also serve as a reminder that these children represent thousands of children currently in the foster-care system. Perhaps their stories will inspire you to consider opening your home to a child needing a family. For more information and to learn about other waiting children, visit AdoptUsKids.






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Reflections on my trip to Israel

A couple weeks ago, I took a weeklong trip to Israel with a group of about 20 other women. The purpose of the trip was to learn more about Israeli Palestinian conflict, as well as to visit some historical sites. A couple people have commented on the fact that I haven't written about that trip yet on my blog. It's a bit unusual for me. Typically when I visit another country with the purpose of storytelling about humanitarian efforts, I am writing from the road. I had every intention of doing that on this trip, but on our first day there our fearless leader, Lynn Hybels, requested that we not write at all during the trip. Lynn has been very engaged in peacekeeping efforts in this area for some time, and she understands how complex the situation is there. She wanted us to get the full story and to have time to process before we write about what we learned. I think she was wise in this advice.

 

March 7, Beatitudes, D. Katanacho, Capernaum, Galilee-0539

 

And here I am, two weeks later, still not having the right words to write about all I saw and learned.

This is what I do know to be true:

I came away with more questions than answers.

The situation between between the Israelis and the Palestinians is extremely complex and there are no easy solutions. As a person who considers herself to be moderately globally aware and somewhat of a news junkie, I really had no idea what was going on in Israel. I think that misinformation and misunderstanding abounds in both the reporting and understanding of this conflict worldwide, and specifically in the United States. There is also incredible inherent bias involved in how the conflict is viewed. Things like political leanings, religious persuasion, theological ideology, and prejudice against particular cultural groups all play a part in the lens with which we view what is happening there. This was made abundantly clear to me last week, when I simply linked to another article written by a Christian man who suggested that perhaps people of faith were not taking the persecution of our Christian brothers and sisters in Palestine as seriously as we would the persecution of Christians in other parts of the world. This immediately garnered angry backlash, and I was even called an anti-Semite.

The objective truth is that thousands of lives have been lost in this conflict, and thousands of families are grieving loved ones. The objective fact is that peace is desperately needed for both sides. I did not come away from this trip picking a side. I came away from this trip wanting to be both pro Israel and pro-Palestine, and most of all, pro-peace.

We met with a group of bereaved parents who were both Israeli and Palestinian, who lost children to the conflict and who are now working together for peace. They meet together, and cook together, and try to pave a way for resolution. This is what they implored of us: “Do not pick a side. Do not go home to your country and fan the flames of conflict between Jewish and Muslim people. Be pro-peace.”

March 5, Parents' Circle, Tent of Nations-0206 

March 5, Parents' Circle, Tent of Nations-0218 

March 5, Parents' Circle, Tent of Nations-0322  

I am going to try my best to hold to that.

As I contemplate how to communicate all I learned, what I ultimately know is that it is through the power of the personal stories of the people who are living there that empathy and understanding can be achieved. Over the next month or two, I hope to highlight the stories of some of these people, and let you hear from them directly. I ask that you listen to them as individuals, and that you hear their stories with an open mind and an open heart.

March 5, Parents' Circle, Tent of Nations-0162

Also, if you are local to Orange County, please join me for brunch this Sunday to hear from some of these brave parents in person, and hear their stories of radical forgiveness. You can RSVP here.

In the meantime, check out this NPR podcast with Robi Damelin and Bassam Aramin, who will be speaking at the brunch.

Also, if The Israeli/Palestinian conflict is something that you feel you need a primer on, check out this video. I think it lays a great framework for what is going on there.

photos by Christine Anderson Photography


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What I want you to know: drug addicts are good people with a terrible disease

What I Want You to Know is a series of reader submissions. It is an attempt to allow people to tell their personal stories, in the hopes of bringing greater compassion to the unique issues each of us face. If you would like to submit a story to this series, click here. Today’s guest post is by Lauren F

My story starts back in 2009, the year I graduated from high school. I started having many surgeries for several difficult medical issues I was having at the time (and still suffer from). Most people know when you recover from surgeries you are given narcotics for the pain. While I was hospitalized after my surgeries the doctors would pump Morphine or Dilaudid (strong opiates) throughout my system before I went home on pain pills. As time went on I needed those pain pills more and more. Not only for the surgeries, but for the pain I was having daily from my late stage endometriosis, poly cystic ovarion disease and fibromyalgia. I started going to pain medicine doctors with all the right intentions of getting help. Slowly but surely I became more and more addicted to these pills. It didnt take too long to come out of denial and want help. I was in different outpatient treatment centers which werent enough to help me. For over a year I was on constant Percocet and Fentnyl patches daily until finally in August 2012 my parents were able to put me into inpatient treatment In Indianapolis, IN where I came out sober and have been ever since.

What I really want you to know is that just because I am an addict doesnt make me a bad person. Addicts are good people who make bad choices while in the depths of their disease. Sure I hurt my family during the time I was addicted, but they have forgiven me and I will make all the amends that I can for them. I never stole my drugs, I never got them illegally, I never did illicit drugs nor did I ever do anything illegal. I am very lucky when it comes to my addiction versus other addicts. I realize that addicts and alcoholics can be very hurtful to their families. Its not right, not fair and not intended. Addicts deserve respect as people. No one asks for this disease and no one deserves it. Same for the family members hurt by it, they dont deserve it either. The United States prescribes eighty percent of the worlds opiates so addiction is very prevalent in our society. Addiction isn't caused by a lack of character, its caused because our brains relentlessly demand the drugs we are addicted to. It is a very condescending disease and the people who it will strike have no idea that when they chose to put that first dose of an illegal substance or a doctor prescribed substance in their body that it will cause major destruction in all ways possible.

I want you to know that most addicts are not homeless or in prison, many are not poor (in fact, some are very wealthy), not all addicts commit illegal acts and many addicts are an extremely wonderful asset to society. I want you to understand that when you associate addiction with the previously mentioned things it is very hurtful to those who are not in those situations. Please understand that addiction is a disease as much as cancer or diabetes. It just manifests itself very differently and unfortunately causes pain to everyone. So the next time you think of addicts please remember that alot of us are sober, hold jobs and live good lives. Family members please consider forgiving someone in your life who has hurt you because of their addiction and addicts please consider getting help if you need it and make amends to your families if you have hurt them.

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Best satire reviews on Amazon

There are a few things in life that make me inexplicably happy no matter what mood I’m in…things that restore my faith in humanity and lift my spirits regardless of what’s going on. Flashmobs are one of those things. I just grin even at the idea of random people coming together under the purpose of bringing cheer through a surprise dance. But there is another convergence of random people bringing joy that I want to talk about today: the phenomenon of satirical Amazon reviews.


The comment section of an Amazon listing seems an unlikely place to find joy, and for most product listings this is probably true. However, through coordinated efforts that are beyond my understanding, there are a small number of products that people have singled out to receive a veritable concert of mockery in the review section. And the results? Hilarious. Laugh-until-you-cry funny. And they make me very, very happy.

Phantom Amazon satire reviewers: I know making a mockery of Amazon reviews is probably a thankless task. You spend your time and creative energy for no money and little recognition. And to you, I’d like to say a heartfelt THANK YOU. Thank you for making the world a better place through sarcasm.

Here are a few of my favorite reviews, but to really get the fullness, you’ll have to click through and read them all on Amazon.


" I am taking a Spanish class and saw this pen in a store with packaging both in English and Spanish. Since I had to write a short essay in Spanish and I only speak English, I thought that this pen was perfect. But I tried to save some money by buying these on line. Notice that this packaging is only in English. I started writing my essay but it only came out in English (which will work for most people). But I needed the bilingual pen. Very disappointed."
Playmobil Security Checkpoint
"I was a little disappointed when I first bought this item, because the functionality is limited. My 5 year old son pointed out that the passenger's shoes cannot be removed. Then, we placed a deadly fingernail file underneath the passenger's scarf, and neither the detector doorway nor the security wand picked it up. My son said "that's the worst security ever!". But it turned out to be okay, because when the passenger got on the Playmobil B757 and tried to hijack it, she was mobbed by a couple of other heroic passengers, who only sustained minor injuries in the scuffle, which were treated at the Playmobil Hospital. The best thing about this product is that it teaches kids about the realities of living in a high-surveillence society. My son said he wants the Playmobil Neighborhood Surveillence System set for Christmas. I've heard that the CC TV cameras on that thing are pretty worthless in terms of quality and motion detection, so I think I'll get him the Playmobil Abu-Gharib Interogation Set instead (it comes with a cute little memo from George Bush)."



Hutzler 571 Banana Slicer
"For decades I have been trying to come up with an ideal way to slice a banana. "Use a knife!" they say. Well...my parole officer won't allow me to be around knives. "Shoot it with a gun!" Background check...HELLO! I had to resort to carefully attempt to slice those bananas with my bare hands. 99.9% of the time, I would get so frustrated that I just ended up squishing the fruit in my hands and throwing it against the wall in anger. Then, after a fit of banana-induced rage, my parole officer introduced me to this kitchen marvel and my life was changed. No longer consumed by seething anger and animosity towards thick-skinned yellow fruit, I was able to concentrate on my love of theatre and am writing a musical play about two lovers from rival gangs that just try to make it in the world. I think I'll call it South Side Story."



The Mountain Three Wolf Moon Short Sleeve Tee
"This item has wolves on it which makes it intrinsically sweet and worth 5 stars by itself, but once I tried it on, that's when the magic happened. After checking to ensure that the shirt would properly cover my girth, I walked from my trailer to Wal-mart with the shirt on and was immediately approached by women. The women knew from the wolves on my shirt that I, like a wolf, am a mysterious loner who knows how to 'howl at the moon' from time to time (if you catch my drift!). The women that approached me wanted to know if I would be their boyfriend and/or give them money for something they called mehth. I told them no, because they didn't have enough teeth, and frankly a man with a wolf-shirt shouldn't settle for the first thing that comes to him. I arrived at Wal-mart, mounted my courtesy-scooter (walking is such a drag!) sitting side saddle so that my wolves would show. While I was browsing tube socks, I could hear aroused asthmatic breathing behind me. I turned around to see a slightly sweaty dream in sweatpants and flip-flops standing there. She told me she liked the wolves on my shirt, I told her I wanted to howl at her moon. She offered me a swig from her mountain dew, and I drove my scooter, with her shuffling along side out the door and into the rest of our lives. Thank you wolf shirt. Pros: Fits my girthy frame, has wolves on it, attracts women Cons: Only 3 wolves (could probably use a few more on the 'guns'), cannot see wolves when sitting with arms crossed, wolves would have been better if they glowed in the dark."


Tuscan Whole Milk, 1 Gallon
"I'm a Vegan, but a closeted Tuscan Whole milk drinker...if anyone in my commune found out, they'd banish me to the netherlads of Bacontopia, to be ravaged by the ills of a factory farmed hell hole of a society that you pukes wallow in...with that, I make straw purchases from unlicensed dealers to circumvent existing codes of conduct within our commune. I do this on the darkest nights under cover, in living fear of being caught & judged & convicted...but it's all because of Tuscan Whole milk...luscious, thick, rich, creamy & brain freezing cold!!! OH SHEVA!!! HAVE MERCY ON MY SOUL!!!"


Uranium Ore
"This product doesn't work as well as I would have hoped. I kept three cans in a terrarium with my 4 pet turtles for two years (starting when they were 11). Today, while they are definitely teenagers, they completely lack the following: -Any kind of karate skills -Prounounced valley accent -Tendency to fight crime -Dislike of my paper shredder There may have been an effect, however, as three of my turtles now seem to enjoy pizza." 
"There is little doubt now that David Husselshaft is a major force in the music business these days. I've already been a fan for many years, but an amazing thing happened recently which I have to share. The doctor said my dog Cherish had only days to live. Desperate for any sign of recovery, I played this CD in the garage for him 24/7, and not only did my dog die, but so did 2 cats and all of my plants. My neighbor came down with a rare form of stomach virus, the one causes massive cramping and explosive diarrhea. Boy did I prove that doctor wrong! The song "Hot Shot City" is particularly good."
Wheelmate Laptop Steering Wheel Desk
"Wow is this thing great! I use it as a "mini-bar" when the friends and I go out to the bars. I can quickly fix multiple shots of tequila for myself and the friends as we drive from one bar to the next. We also discovered that if you place a pillow on top of it and turn on the cruise control you can catch quick naps on the interstate. If you swerve to the left or right the rumble strips on the road wake you up in plenty of time before you get into trouble. I can now take longer trips without being tired!"



Denon AKDL1 Dedicated Link Cable
"Transmission of music data at rates faster than the speed of light seemed convenient, until I realized I was hearing the music before I actually wanted to play it. Apparently Denon forgot how accustomed most of us are to unidirectional time and the general laws of physics. I tried to get used to this effect but hearing songs play before I even realized I was in the mood for them just really screwed up my preconceptions of choice and free will. I'm still having a major existential hangover. Would not purchase again."
"Read this book before going on vacation and I couldn't find my cruise liner in the port. Vacation ruined."

Any other hilarity I’m missing in the comment section of Amazon.com?


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