The "Apathetic" Doctor May Care More Than You Think

Dear readers, I've been thinking a lot lately about doctors and chronic pain patients. Sometimes, I think it's easy to get frustrated at doctors trying to treat us for chronic pain, especially when we try several medications and procedures, each one being increasingly risky and less likely to work, and we do not get better. Sometimes, it seems like the doctors aren't listening or even trying to help, and, of course, there are always doctors who simply aren't a good fit for their patient. I have also had doctors whom I instantly liked, who genuinely seemed to care for me, and who tried their best to help me. Yet, I have come to believe that, most of the time, even those doctors who seem like they aren't putting much effort in to help me and my chronic pain are trying just as hard, or even harder than the rest of them.

I came to this conclusion during a doctor's appointment a few weeks ago. I have always had lukewarm feelings about this doctor, but I was still excited to share my good news with her--I had recently discovered I was getting daily exposure to one of my main migraine triggers and cutting it out was helping a lot. While I'm still considered a chronic headache patient and have far more pain than the average non-chronic pain person, my pain has been greatly improved lately. My "apathetic" doctor was thrilled by the news, hugging me and talking about how proud she was of me that I never gave up looking for triggers and how moments like these make working with chronic pain day in and day out worth it. These words helped me to see my doctor in a new light.

Everyday, doctors who specialize in chronic pain see several patients in chronic, intractable, and often disabling pain. Chronic pain patients rarely get better, so doctors who work with them must be used to being disappointed, to having all their best efforts fail over and over again. Even though I knew this, it took my doctor's words to help me fully realize how hard it must be to work with chronic pain patients and how what seems like apathy may actually be an effort to hold realistic expectations. Suddenly, I realized that my apathetic doctor had never been that apathetic after all.

There are still some very real problems with the medical care of chronic pain patients. Doctors are not exempt from ingrained stereotypes about chronic pain. There are still definite gender biases in the treatment and diagnosis of chronic pain. And, of course, as human beings, doctors are bound to mess up sometimes. Yet, as I have learned, most doctors caring for chronic pain patients truly wish to help--and they are facing nearly impossible odds and constant disappointments in order to try. That takes a lot of bravery, and I truly admire them for it.

Essay, Acknowledgements and Other Important Project Components Completed!

Dear Readers,

Hello. I have officially completed my honors college project, but I plan to still make posts on my blog periodically. I hope to continue to maintain my blog.

For today, I thought I would post acknowledgements as a thank you to those who helped me with my project, I really appreciate it! Also, I would especially like to thank anyone and everyone who has been reading my blog. While my blog is hardly well-known, it has been getting more hits than I anticipated, and I love knowing that others are reading what I have written and researched.  I hope that you will continue to read my blog.

I will most likely post my final essay on the blog at some point, but I think it would be most prudent for me to wait a few weeks before doing so, in order to allow time for my essay to be processed by the honors college.

Anyway, I have linked to my acknowledgements/thank yous below, and remember, the end of my project isn't the end of my blog, so please stay tuned!

Link: https://docs.google.com/document/d/1nFnB8l3kb2gUKKmFcXgpVW2CCCS_QSkc3SGRxzAsjfg/edit?usp=sharing

Chronic Pain Triggers Resources

Hi, readers. As a person with chronic migraines, I do my best to monitor my "triggers" and try to avoid them. In case you don't know, triggers are activities, substances, or occurrences that tend to cause worse pain episodes in individuals. For example, some of my triggers are stress, the lights in Walmart, shifts in barometric pressure, and artificial sweeteners, but triggers are different for every person. While most people associate triggers with migraines, they do play a role in other chronic pain disorders as well--just think about the people with arthritis who get worse pain when it rains, or my relative with Fibromyalgia who gets worse pain when she eats certain preservatives. If you are interested, I have gathered several resources that contain information about what triggers are, how to identify triggers, common triggers, etc.

Since I couldn't find a good online resource about this, I would also like to briefly discuss the difference between triggers and causes. I got this information from talking a doctor at Mayo Clinic, as well as my local headache specialist. They said that people with chronic pain are predisposed to feel pain, and often react to things that would not cause pain in other people. In other words, triggers don't cause the chronic pain disorder (usually), but it can still be important to identify and avoid them because it can help decrease the frequency of your worse pain attacks.

1. Identifying Pain Triggers

Link: http://www.headache-help.org/identify-migraine-triggers

This website is discussing migraine triggers, but  this advice is easily transferable for any pain disorder. The article explains the correlation between triggers and pain attacks, and offers some advice about how to track your activities, food, etc. with a pain diary to watch for any possible triggers that might be making things worse.

2. Some Common Pain Triggers

When do We Tell? When do We Act Like Nothing is Wrong?

Hello, readers. Remarkably, I have actually had a very easy time with my chronic pain lately, with little pain for a couple of weeks, and other people have been noticing a change in me, even though they don't quite realize that the change they have been seeing is because of a lack of pain. For instance, other people have been commenting on the fact that I am singing more, am peppier, and that my eyes are "much less foggy right now" (Side note--Does pain give you foggy eyes?) Anyhow, this surprised me, as I frequently hide my pain and do my best to act as if I have more energy than I do. I did not realize that others could tell the difference between when I am in a lot of pain and when I have little or (in rare cases) no pain.

This realization made me think a bit differently about the practice of hiding physical pain. For me, as well as for other chronic pain patients I know, hiding our physical pain as much as possible is second nature. It can often seem like a matter of survival. For instance, I know that it distresses my family to see me suffer, so I try to down play it as much as possible. I also hid the extent of my pain from most of my high school class because I was afraid they wouldn't believe me, and I hide it for many other reasons as well. It seems sensible, yet, I am slowly learning that this practice of always hiding my pain can be counter-productive at least some of the time. I cannot expect others to help me when I am struggling with my condition if they do not know that I have chronic pain in the first place. Furthermore, I now realize that, if people are noticing that my eyes are sometimes foggy or that I seem low-energy, they can probably tell that something is "off" with me but do not know what. Telling others may help with this, but it's rarely that simple.

New Poem-Migraine "Super Powers" (Quotes are intentional)

Dear readers, if you enjoy a strange sense of humor in the face of pain, maybe you will enjoy this poem. I'll write a bit of a blog post with it, as always, but I think I will do so after the poem this time, so scroll down if interested. As always, click "read more" for the full poem.

Migraine “Super Powers”

By: Blog Admin

If you locked me in cellar, where

my eyes would strain through darkness

and my ears would hear only the hum

of air conditioning and the rasp of my

own breath, I could not escape.

I could not conjure magic to glove my hands

in flames so my bonds would fall

to the ground as ashes. I could not

punch the door, with a fist of iron, sending

splinters showering the ground,

but I could tell you if it was raining outside.

The barometric pressure

would grab hold of the slicing pain in my head,  expanding it

until it ached and  fizzed, as if someone

flooded my head with carbonated soda.

I would grin at my weather-predicting skills.

Of course, I would remain trapped in the darkness.

Coping with Pain Through Non-Written Arts--Discussion with Resources

Below this discussion, I have listed some great resources about using art to cope with chronic pain, including a document with ideas about what types of art projects to do. These resources may be found by clicking the "read more" tag in this document.

Hello again, readers. I designed this entire blog and corresponding honors project around the idea that writing and reading literature can help people cope with and learn from their chronic pain (see the about this project page for details). However, I am well aware that writing is not the only art form that can be used as a coping mechanism for chronic pain. Any form of artistic expression, such as painting, sculpting, playing music, sketching, or dancing can be a means of expressing pain in ways that is hard to do through normal conversation. Personally, I have found that simply finding a way to express the pain makes a world of difference, as doing so helps me feel less powerless and encourages me to learn from my own expression of pain.

Many, if not all, chronic pain patients know how to stay silent and hide their pain. It's a matter of survival most of the time. Even friends may tire of endless complaints about pain, people may incorrectly label us or underestimate us if they find out about our chronic pain too soon, and those closest to us may grow aggravated by the details of our suffering. Often, it makes sense to stay silent about our pain, and I don't think that is wrong. I cannot count the number of times I have hidden my pain. Yet, staying silent all of the time can hurt us, both in the forms of misunderstandings with others who do not fully understand our pain, and in the sense that we need an outlet for the pain we endure. The arts can help provide this outlet, and, if you wish to share them, the artwork you produce can also help inform others about your pain in a way that conversation cannot.

Correction to "Holding On" Dedication

Dear Readers,

I apologize for a major error I made in the last post--I accidentally wrote that 90% of people with migraines can function in society, when it should have been that they cannot function in society.

I have since corrected the error.

Thank you

Holding On-Dedication and Poem by Me

Dedication (Scroll down and skip to the poem if you want-remember to click "read more")

Despite the pain I deal with on a daily basis, I never forget that I am undeniably fortunate. According to the Migraine Research Foundation, over 90% (other estimates say 93%) of people with migraines cannot function normally in society during them. When I try to calculate the statistics of my situation, accounting for the fact that I have migraines many, many days a month, as well as severe to moderate headaches most of the other days (which also can reduce productivity by up to 50 percent or more)...let’s just say... the vast majority of people with my level of Chronic Migraine Syndrome can’t function in society. And, of course, there are people with different types of chronic pain in the same situation. Those people lose everything because of something they can’t control. I know several people through online migraine communities who have had to go on disability and quit their jobs. Some of them can hardly ever can get out of bed to wash their hair anymore.

Yet, here I am, going to school, an honors student. It’s not very easy, but I can do it. I don’t think this because I have some sort of strength the 90 plus percent of people in my situation are lacking. In fact, I think they are stronger. I don’t think many people realize the kind of strength it must take to keep holding on through days of crippling illness, the strength that the so called “invalid” must have. I’m very, very lucky, and there isn’t a day that goes by that I don’t think of those who aren’t.

This is a major reason I am pushing so hard for advocacy for the conditions of chronic pain sufferers—I try to be an advocate for those who can’t be one for themselves, but I wish I could do more. If you are one of those people, my heart goes out to you. I think you are very, very strong, stronger than I can imagine, and this poem is for you.

Holding On

By: Blog Admin

A woman lies in bed as the sun rises and sets in

endless circles around the sky. Agony pierces her back.

She grits her teeth against the pain.

Others shake their heads at the woman in bed as she

“lets” the  world slip by outside her ashen

bedroom walls. They imagine her—leaning

 against a pillow of government dollars, closing

 her eyes, and inviting pain to swirl through her back.

They imagine her letting go.

But the woman rolls to rest her face in the sun beams

streaming through the window, ignoring

 the pain slicing down her spine. She closes her eyes and weaves

herself a net of thoughts, plucking and tugging each strand

to bridge the chasms in her life:

Resources About Going to the ER

Hello, readers. Many of the people I have met who have chronic pain (both through the internet and in person) have expressed bewilderment about whether or not they should go to the E.R. when their pain is at it's worst--emergency rooms are not always equipped to treat chronic problems, but, sometimes, our pain becomes some physically unendurable that we need some kind of intervention.

Unfortunately, this is not a question I can answer, as I feel that the answer will depend on each person's situation. Personally, I have never gone to the emergency room because of my pain because, when my pain is at its absolute worst, my migraines temporarily paralyze my limbs so I cannot move and riding in a car always aggravates my headaches. Yet, I know the situation is different for others. As it is difficult to think when pain is that extreme, it is helpful to consider this scenario in advance. Whatever you decide, I gathered some resources that will both inform you about the factors to consider when going to an emergency room for chronic pain and help you prepare for the trip if you decide to go during one of your worst bouts of pain. I hope they help. As always, click "read more" to see all of the resources and my annotations (There are 3 resources.)

1. Form to Carry with You in Case You do Need to Go to the Emergency Room

Link: http://theacpa.org/uploads/documents/ACPA%20pain%20form.pdf

This form, produced by the ever-amazing American Chronic Pain Association, can be printed and filled out in advance in case you ever have a terrible bout of pain and require emergency assistance. This form is not part of official emergency room paperwork, but is very helpful because you can list your medical history, including current medications, on it. If you do end up in the emergency room, you can give this paper to the doctor instead of explaining it all at the time, which can be helpful if your pain makes it hard to think or speak.

2. Brochure About How to Prepare for Going to the ER and What to Expect

What Do We Do When Nobody Can Cure Us?

Hi, everyone. I’m facing a question I’m sure many others in chronic pain have grappled with—why are my prayers for healing never answered? Why can’t anyone cure me? I recently returned from my visit to a prestigious clinic. My doctor was great, but I gathered little new information and received the same diagnosis as always (Chronic Migraine Syndrome), as well as the news that I will probably never be cured. Hearing this from one of the best headache doctors in the nation hurt—part of me was still hoping for a cure.

But even now, even when I am feeling disappointed in the medical system and frustrated because of the role my migraines are playing in some major life decisions I am trying to make, I'm not sorry that I was born with chronic pain—I know I would not be the same person without it. Having migraines has given me empathy for others in constant pain and has allowed me to help others in my situation in small ways, such as by encouraging the teachers of diversity classes at my college to incorporate a discussion of chronic pain into the curriculum or by giving advice to people who have recently developed chronic pain.

Shush-Writing

Hello! This is a different kind of writing for me. It is genreless, although I was definitely influenced by both creative non-fiction and poetry.  Basically, I decided to experiment with something out of my poetry comfort zone, as I thought the experimentation might lead me to new insights about my pain. I do think the experimentation led me to include more rhythm in my piece that I normally do, and I was also pleased with how this piece represents the frustration I often feel about pursuing new, and often ill-defined, remedies. I was trying to represent the barrage of information, opinions, and attempts, I experience. As always, click read more for the whole poem.

Shush

By: Blog Admin

“Shush.”

I cradle my head in my hands, as if my hushed voice could lull the nerves burning in a band around my head.

“You must be doing something wrong,” they say.

 I tiptoe around my migraine, wearing earplugs to shield it from the clanging dishes or blasts of music. Icepacks on my forehead. No preservatives in my diet. Gluten free muffins, spongy and deflated, for breakfast.

“Shush.”

Pain flares.

“This is your body sending you a message,” they say.

PowerPoint for Educating Others

Dear Readers,

Hello! I recently combined some research and my own knowledge into a PowerPoint that others can use as an introduction to chronic pain. I have great news about it...a couple professors in the education department at my university have agreed to add it to units in their classes about diversity! The PowerPoint is meant as a way to introduce chronic pain, address some misconceptions about it, and discuss societal biases about it with people who have not heard much about chronic pain previously. Still, I thought it might interest some of you. Feel free to use it for educational purposes if you wish.

Also, I created a collage of advertisements and memes representing biases that people in chronic pain face on page six of the powerpoint. If anyone is interested, you may find the PowerPoint linked below.

Link: http://www.slideshare.net/leahalsaker/chronic-pain-49794274

If anyone has other ideas about ways to educate others about chronic pain, please comment on this blog (or contact me).

Resources about Pain Killers

Hello. This may sound strange coming from a chronic pain patient, but I am terrified of pain killers. They can help me bear my pain when it is at its worse, but I am also afraid that I will become too dependent on them and actually worsen my condition by taking too many pain killers (The overuse of painkillers can cause rebound headaches for people with Chronic Migraine Syndrome, which I have.) Because of this fear, I tend to overcompensate by refusing to take pain killers when I probably should, causing myself unnecessary suffering. For me, at least, trying to decide when to take pain killers for my constant pain and when not to is very difficult.

Here, I have provided some resources about pain killer addiction, as well as alternatives to pain killers. I am not posting these resources because I believe that people in chronic pain should not take pain killers (When they need to, they should) or because I think many chronic pain patients abuse pain killers (That's actually a dangerous stereotype). Rather, I am posting these because I recognize that people in chronic pain have to make tough decisions about when to take pain killers. I am hoping these posts will reassure you about your pain killer usage.

1. Warning signs of addiction to pain killers

Link: http://blogs.psychcentral.com/addiction-recovery/2012/05/5-signs-addicted-pain-medication/

This article presents and discusses five different signs that you are becoming addicted to your painkillers. This article mostly discusses early signs of pain killer addiction, so if you do some of these things, it does not mean you are an addict, it just means you might want to monitor your use of pain killers more closely. I especially appreciate warning sign number one, which states that it can be dangerous if you start considering taking your painkillers for reasons besides lessening pain.

2. Chronic pain management myths and facts

Repost with Additions- Resources for Staying Connected to the Chronic Pain Community

Dear Readers,

Hello! This post is mostly a repost of a resource list that can already be found on the resource page of my blog. However, I recently added to my list of resources for staying connected to the chronic pain community and, since updating a post does not place the post in the feed, I wanted to make sure the additional resource was not lost in the shuffle! If you are interested, please check out the new resource (the first one), which contains a list of the many chronic pain organizations available on the internet. I personally feel that it is very important to stay connected to other chronic pain patients in order to reduce the feelings of isolation that chronic pain can entail. Familiarizing yourself with chronic pain organizations is a good way to start.


1. List of Chronic Pain Organizations

Link: http://www.forgrace.org/resources/pain-organizations/

First of all, I would like to point out that the website that contains this list of great chronic pain organizations is a great chronic pain organization itself. This organization, For Grace, was founded by a chronic pain victim and advocate and contains many great resources, with a focus on women in pain, that may be of use to you. This list contains links to the websites of many prestigious organizations, such as the American Chronic Pain Association and Partners Against Pain. If you are looking for organizations that can help you get in touch with other people in chronic pain, or places you can call to ask questions about living in chronic pain, these websites may be a great place to start.


2. Partners Against Pain

Doubt and Hope

Hi, readers! I don't know about you, but one of my favorite books of all time is Jane Eyre by Charlotte Bronte. At one point, Jane is waiting for the answer to something, and she is almost wishing the answer doesn't come because "to prolong doubt was to prolong hope." Even though this quote doesn't directly relate to chronic pain, I have been thinking about it a lot lately. In just a few days, I will be switching doctors and going to a different clinic, where they are going to run some tests on  me and reassess my diagnosis.

I feel like Jane right now, like I would rather not hear the answer in case it's the answer I don't want to hear. This, of course is complicated by the fact that I don't know what answer it is that I want to hear. On one level, I think I would rather that their tests find something than that they don't. That might seem strange, but part of me is tired of having this unexplainable pain that no one can treat and that no one else can see any evidence of. I think that other people with chronic pain may have a similar problem. Most of us are like Jane, stuck in a place between doubt and hope, continually looking for answers, if not from one doctor, than from the next, or from the next chiropractor, or the next acupuncturist, or whatever the case is. It's a strange state to be in. Personally, sometimes I don't even want to let myself hope that I will be cured, because hope can be dangerous. Having hope means you can be let down. Yet, I can never quite stop myself.

And even though I've had people tell me I shouldn't be too hopeful, I don't think hope is wrong. I think we, as people in chronic pain, need hope. Hope can help us cope with pain. I think its more a matter of what our hope looks like. For instance, for a long time, I was living for the hope that I would grow out of my pain, and that was my main focus in life. It kept me from enjoying what was around me. So, I think hope can be good, but not when we let it control us. Too much hope can be as life-destroying as not enough.

New Poem- Especially Then

Hello, readers. As part of my own personal writing therapy, I decided to write a different kind of poem today. I'm not going to explain it much because I think the title and the poem speak for themselves. Let's just say that, even though I often write about societal biases and ignorance in the face of chronic pain, I am deeply grateful for those who are not in chronic pain and have yet done their best to understand and share in some of the difficulty of chronic pain. If you are one of those people, this poem is for you. Please click "read more" for the full poem.

Especially Then

For my Dad, for my Mom, and for Everyone Else who Tries

By: Blog Admin

I want you to know that I love you.

I love you when you look at me, with my flushed cheeks,

the picture of health,  and still trust me, believing

a monster, an illness you cannot see, lurks in my brain.

I love you, even when I snap, yelling and stomping my

foot like a child because you cannot see

the way the edge of the table glimmers in green or

the way the walls ripple—the way the world

looks through the eyes of a girl with advanced Chronic

Migraine Syndrome.

And I love you, even when

 pain drills a hole through

my head,  and all you can do

is hold my hand, trembling.
Even then.

Especially then.

I want you to know that I’m sorry.

Resources for Explaining Chronic Pain to Those who are Pain Free

If you are interested, please also see my last blog post, which included a brief discussion about talking to doctors about your chronic pain, as well as some resources to help with this matter. In this post I would like to discuss the difficulty of explaining chronic pain to people without pain, as well as to provide some resources to help in your endeavors. These resources include a Ted Talk and a video you may want to show someone without chronic pain, as well as a useful simulation. You can find the resources below.

Explaining chronic pain to someone without chronic pain is difficult. Many, many people I have meant often refuse to believe me that there are people, such as myself, who are simply in pain all of the time. Many of the Chronics (my code name for chronic pain patients) I know express frustration about the difficulty of trying to make those close to them understand that their pain is real and can actually be quite debilitating, even if they seem to be doing "alright on the outside." I can understand this frustration, and I often feel the same way. Yet, I think I understand why people without pain seem not to understand the gravity and reality of chronic pain. I have been in constant or near constant pain nearly as long as I could remember, and it took me a long time (well into my teenage years) to tell my parents this. It didn't take me that long because I didn't want help with my pain--it took me that long because I had always been in pain, that's the way my body has always worked, and it was hard for me to understand that there are people who aren't in pain all of the time.

Resources for Explaining your Pain to your Doctor

Dear Readers,

I love doctors. I think they are amazing people, and I can't imagine what kind of bravery and compassion it must take to devote your whole life to dealing with sickness. Yet, I'm sure we all know that sometimes doctors and patients misunderstand each other of or have difficulty communicating with each other. I think this happens especially frequently for those in chronic pain. Chronic pain is often (though of course not always) an invisible disease. By this, I mean there is often no outside evidence of chronic pain, so doctors can only take the patient's word that the pain he or she feels is, in fact, real. 

With this sort of situation, it is no wonder that miscommunications sometimes occur. I myself, have sometimes gotten off on the wrong foot with a doctor because I feel unsure how to describe my symptoms accurately. Below, you will find a list of three helpful resources t that may help you when trying to talk about pain to your doctor. Please note that I had posted one of these resources before, but decided to reorganize the resources a bit. The other two are new. Click "read more" to see the resources.

1. Things to remember while talking to your pain doctor

 http://chronicpainrecovery.com/Article_Talking_to_your_doctor.asp

New Poem-5 Senses of Migraine Auras

Hello, readers. Here is the poem I promised about my migraine auras. While you will probably get the idea from the poem, for those of you who don't know, an aura is when a patient experiences a strange sensation of some part before or during a neurological phenomenon, typically a migraine or seizure. These auras can include lights, sensitivity to sound, and well...my poem includes others as well. I only recently learned that it is rare for someone to experience auras in all five senses in a short period of time, so I though I would write a poem about what these five sense auras are like. I also have experienced other aura related symptoms not include here, such as memory loss, aphasia (difficulty remembering words/language), and loss of balance. I hope you enjoy this poem. 

5 Senses of Migraine Auras

By: Blog Admin

My throat prickles with

dryness, but I narrow

my eyes at the five feet of linoleum

between my chair and the sink. The

pain –my migraine—twists, a

chain coiled around my head.

I glance at the sink, but instead of

seeing muted steel, the sink shimmers with yellow

and green. A couple blinks, a shake of my

head, and the pain slices above my

left eye,  the lights dancing

in rhythm to the pain.

Resource Updates and a Quote

Dear Readers,

Hello! I am currently drafting and revising another poem. This one will be about the way my migraine auras alter my perception of reality, so stay tuned for that. I am also writing this post to tell  you that I just posted a couple of new resources for chronic pain patients. I found some awesome online tools to help chronic pain patients keep track of their symptoms, including a device by which patients can create “maps” of their pain, and I wanted to share these resources with you. Of course, you may find the new resources in the resource page of this blog, as well as in the previous blog post.

I would also like to leave you today with a quote I recently stumbled upon by Bob Dylan: “Behind every beautiful thing, there's some kind of pain.”

I think this is a quote that could be interpreted many ways, like most quotes. For me, this quote means that everyone in the world must endure pain, but also that pain can make something beautiful. I’m not denying that pain is hard to bear and is often very ugly, I simply think that pain is what so often pushes people to be better persons than they think they can be. For instance, chronic pain may inspire someone to a life of advocacy or help someone find inner strength he or she may not know he or she has. I have certainly seen this in my life, and I find it strangely comforting to think about how the most beautiful things are often products of pain.

Resources for Tracking Symptoms

Here are some resources to help those with chronic pain keep track of their various symptoms.


1. Pain Mapping
http://theacpa.org/painMappingTools/

This website primarily focuses on four types of pain Fibromyalgia, Neuropathy, back pain, and headache pain. It allows users with at least one of these types of pain to pinpoint the areas in which they feel pain, the intensity of the pain in each area, and the texture of this pain (throbbing, aching, shooting, etc.). Patients can print out this pain map to show it to their doctor or others.


2. Online Symptom checker

Link: http://symptoms.webmd.com/#introView

This website allows patients to put in their genders, ages, and health symptoms to receive ideas about what conditions they may have. Of course, this tool is no substitute for a doctor's advice and should not be considered a professional diagnosis. Yet, this website provides some useful suggestions and ideas that you may want to discuss with your doctor if you do not know which chronic pain condition you have. It provides some helpful information about each possible condition.

A Good Day-A Poem

Hi everyone! Since I have written poems describing my chronic pain condition before, I decided to focus on the days when I don't have any pain this time. They don't happen very often, but when they do, they are beautiful. (Click on read more for the whole poem).

A Good Day

 By: Blog Admin

I open my eyes to greet the day and

freeze—

my head feels light

as cotton.

 I prod the side of my

face with a shaking hand.

Nothing—no pain at all. 

Writing Activities to Help You Write About Pain

Hello, everyone. I recently realized that, even though I encourage others to write about their pain, I have not previously discussed ideas or activities to help with these endeavors. Below, you will find some resources with ideas to get you started.

1.Five Tips to Help People Achieve Better Results While Writing with Pain.

Link: http://www.writetosellyourbook.com/writing-advice/how-to-write-the-pain

This useful website provides tips to help people achieve better results while writing about their pain. Actually, these tips may prove useful for many different types of writing, but I find them especially useful when I write about my pain. Personally, I think the most valuable tip is to take breaks when the I feel overcome with emotion--I find it important for me to write about my pain, but I also know that it does not work well if I push myself to write about something I'm not ready to address. Beaks help

The Problem of Guilt and Chronic Pain

Dear Readers,

I’m sure most, if not all, people in chronic pain have experienced the subtle comments, looks, and societal beliefs that can make a person feel like he or she has chronic pain because of some personal failing. For instance, just a few of the many responses I have encountered include the disbelief when I say I am in pain all the time (What do you mean, there is pain that doesn’t shut off?), the constant suggestions which imply I could “fix” myself if I only did the right thing (Have you tried acupuncture, over the counter meds, more exercise, a better diet?), or the insistence that I did something to cause my pain in the first place (This is your body trying to send you a message. Or Maybe you are making everything worse by thinking about it too much).

The Waiting Game

Dear Readers,

Hello. I don't know about you, but I've never been  a huge fan of waiting. I'm not good at waiting in line, waiting for holidays, or even waiting for dinner. Unfortunately, being a chronic pain patient is a waiting game. Chronic pain patients wait to switch medications, wait for the next doctor appointment, and wait for medications to be adjusted (it can take several weeks to adjust to the side effects of the new dosage in order to move up to the next one).

Right now, I am waiting to switch doctors. For several months, I waited to be put on the wait list for a prestigious hospital, and, now,  I am waiting to receive an appointment, after which I will wait for the appointment time to arrive. You get the picture. The same could probably be said for most other chronic illnesses, not just chronic pain.

Short Synthesis Essay About my Semester!

My Dear Fellow Chronics and Allies,

Hello! The first stage of my project is complete. I would like to thank Dr. Woodard for being such a compassionate, patient, and helpful faculty adviser. His help has meant a lot to me. I would also like to thank Dr. Stewart, who will be advising the second phase of my project, in advance for agreeing to help me.

I have finished the short paper I was writing to complete this part of my independent study. In the essay, I discuss some of the theories about why reading and writing literature may serve as effective coping mechanisms for those with chronic pain. I also discuss some of the insights I have gained by writing and revising the five poems I wrote for and published on this blog. Feel free to read it!

Also, even though this phase of the project is done, I will probably still post on this blog, so feel free to check it out any time! I will also most likely be publishing my final paper when I complete the last credit of this course (probably in the fall).

My essay is copied and pasted below (I tried embedding it, but this resulted in some very strange formatting, so I will not be able to embed it as a word document). Please click on the "read more" link to see the entire essay.

Essay:

Literature: A Healing Tool

For years, doctors assured me I would grow out of the pain disorder I have struggled with my entire life. This disorder, Chronic Migraine Syndrome, encompasses a wide range of migraine experiences, but, for me, it means I have a headache or migraine all of the time. Last year, I realized that the doctors had stopped assuring me that I would outgrow my pain. I did not know how to react to the possibility of lifelong pain, so I realized I needed a way to more fully process my emotions about my chronic pain condition. Many others face a similar problem. While the type and severity of pain varies, around 100 million Americans suffer from chronic pain, more than the amount of people who have diabetes, heart disease, strokes, and cancer combined  (“AAPM”). After conducting research, managing a chronic pain blog, reading pain narratives, and writing to reflect on my own experiences, I have developed a fuller understanding of the ways in which writing and reading literature can help chronic pain patients learn from and cope with the physical and emotional pain that chronic pain conditions often entail.

Professional Poster Project

Dear Blog Readers,

I have finished the digital poster of information about my project. I made it to use in an academic poster fair accompanied by my oral explanation, so sometimes there are just bullet points. However, if you are interested--this poster will still give you an idea of how my project progressed this semester.

Here is the link to this poster:
https://www.slideshare.net/secret/q5683ucmo5D3tG

Thank you.

Important Overall Update for my Project

Dear Blog Readers,

Hello! I decided now would be a good time to explain my progress in my project. I am nearing completion of my blog component of my project, but I will be continuing to work on other parts of it. For instance, I am now working on a professional project poster presentation (try saying that 3 times fast!) for an honors academic fair in April. If you are in the SDSU area, I encourage you to look into that, as it will be a very interesting day. However, I will also post a digital version of my poster project, when it is finished, for those interested.

Also, I will be writing a short synthesis essay on my reactions to the process of writing for this project, which I will post to this blog as well, so stay tuned for that!

Until then, feel free to explore the existing resources, quotes, and writing on the site!

Thank you!

New Poem-Bean Bag Toss

Beanbag Toss

By: Blog Admin

I stride forward and toss

a denim beanbag, savoring the thud

it makes as it hits the wood one inch

 away from the hole on the board.

A laser beam of sun hits me,

sending splinters of pain between my eyes.

My fingers wander to massage the spot,

but I halt them and twirl my hair instead.

New Poem-That Old Jellyfish

That Old Jellyfish
By: Blog admin

A jelly fish lives in my brain.

Sometimes, it flays its tentacles,

shooting electric pulses through my neurons,

Updates

Dear Blog Readers,

Hello. I have added a couple of new resources, including a medication reminder tool (listed under the "Interactive Tools" category on the resources page) and a link to a discussion about dealing with sleep that is affected by chronic pain (listed under the "Miscellaneous" category on the resource page). I am hoping to find more resources on the second topic in the future.

Many New Updates

Dear Bog Readers,

I have done several updates on my blog today. I have added more resources links (including a link to a very useful online pain tracking tool).

New Poem-Happiness

Happiness

By: Leah A. (Blog Admin)

A dull ache throbs in the back of my skull

As I gaze at a sunrise. The drowsy prairie

glows in hues of rose and violet.

Absentmindedly, I massage my aching skull,

And I smile.

How should I measure my happiness?

Should I measure it in the number

Of throbs that shoot in my head per minute,

Or the paltry number of days when I do not have pain?

Should I measure it according to items scrawled on a crumpled piece of paper--

A list, which I made years ago, of the things my migraines forbid me to do?

Or, should I measure it in the number

Interactive Online Tools for Chronic Pain Patients

1. Online Tools Including Guided Imagery Practice and Medication Side Effect Charts

Link: http://www.painaction.com/Members/Library.aspx?t=550

This useful website provides many interactive tools related to chronic pain. These tools include guided imagery activities, in which an audio recording guides chronic pain patients to relax by using mental images, and a side effect chart. In the side effect chart, a chronic pain patient can place the mouse over a medication and learn about the potential side effects of the medication. This may help chronic pain patients when making decisions about which medications to use.

2. Chronic Pain Assessment

Important Update!

Dear Blog Readers,

Hello, everyone. To make it easier for my readers, I decided to break up the resources on the resource page into related categories. I hope this helps!

Thanks!

Miscellaneous Resources

1.  Surviving Finals Week with Chronic Pain

Link:
http://chroniccurve.tumblr.com/post/21332969917/college-and-chronic-illness-finals-week

While all college students struggle during finals week, finals week poses even more challenges to college students who have chronic pain. This blog post gives some useful advice about what students can do to make their finals week a little more manageable. I also feel that this advice could help college students with chronic pain during any point in the semester, not just during finals week.

2. Yoga for Chronic Pain

Link: 

https://www.youtube.com/user/lupuscommunity/search?query=yoga+for+chronic+pain

This youtube channel contains a series of instructional videos that walk chronic pain patients through gentle yoga specifically designed for people with Lupus and other chronic pain disorders. These relaxing activities an opportunity for patients to exercise in a less intense way that is less likely to aggravate pain. Of course, if you start following these instructions and feel that it aggravates your pain, stop doing these yoga activities.

3. Tips for Dealing with Lack of Sleep Due to Chronic Pain

Link:
http://www.lupus.org/resources/15-questions-strategies-for-restful-sleep

This webpage contains commonly asked questions about lack of sleep and Lupus, although I feel that certain parts of the FAQ can apply to other chronic pain condition as well. For some advice on how to improve sleep that is complicated by chronic pain, see responses numbers two, four, and seven.

Resources for Staying Connected to the Chronic Pain Community

1. List of Chronic Pain Organizations

Link: http://www.forgrace.org/resources/pain-organizations/

First of all, I would like to point out that the website that contains this list of great chronic pain organizations is a great chronic pain organization itself. This organization, For Grace, was founded by a chronic pain victim and advocate and contains many great resources, with a focus on women in pain, that may be of use to you. This list contains links to the websites of many prestigious organizations, such as the American Chronic Pain Association and Partners Against Pain. If you are looking for organizations that can help you get in touch with other people in chronic pain, or places you can call to ask questions about living in chronic pain, these websites may be a great place to start.


2. Partners Against Pain

Link:http://www.partnersagainstpain.com/measuring-pain/assessment-tool.aspx

This is one of the many organizations listed in the above resource list, but I felt it merited it's own post in my resource list as well. This website has many useful resources and tools for chronic pain patients, including pain measurement guides and pain diaries that patients can print out to track their pain levels. People with chronic pain may find that these resources will help them assess their own pain.

3. Chronic Pain Site

Resources About Mental Coping Practices

1. Mental Coping Techniques

Link:
http://www.spine-health.com/conditions/chronic-pain/11-chronic-pain-control-techniques

This article, from spine-health.com, explains some mental exercises that can help people cope with especially painful episodes. While these exercises do not erase the pain, it may make the painful episode more tolerable.


2. Inner Health Studio-Meditation

Resources About the Emotional Side Effects of Pain

1. Endohope- Guilt As Side Effect of Chronic Illness

Link:
http://endohope.org/2013/05/08/guilt-is-an-understandable-side-effect-of-chronic-illness/

This blog post breaks down several reasons why people with chronic illness, including chronic pain, feel guilty. Personally, I enjoy this article because it helps me understand some of my own reasons for the guilt I sometimes feel.

Rheumatoid Arthritis Warrior-Dealing with Guilt

2. Link:
http://rawarrior.com/3-questions-3-answers-about-guilt-chronic-illness/

This short blog post offers some helpful tips about dealing with the guilt that often comes with chronic illness. While it focuses on people with arthritis, I think the tips can apply to people with different conditions as well.


3. Interviews from Others Coping with Pain

http://www.healthtalk.org/peoples-experiences/chronic-health-issues/chronic-pain/coping-emotional-impact-pain

This article, from HealthTalk.org, contains many short video interviews of people with chronic pain.

Updates

Dear Blog Readers,

I just wanted to let everyone know that I have added several more resources to the resources page, including resources about how to cope with the emotional side effects of pain and how to describe pain to others. I hope you find these resources helpful.

Also, I would just like to remind you that I am accepting writing from chronic pain patients. If you are interested in submitting something, please see the submission guidelines.

Thank you very much!

New Poem-Behind the Mask

Behind the Mask
By: Blog Admin

In front of the mirror,

I carefully construct my mask.

To hide the pain streaking through my brain,

I pull the corners of my mouth into a smile

And cajole my eyes to obedience.

I force laughs through my teeth,

So their light will shine in my eyes, obscuring the pain.

People who Accomplished Great Things with Chronic Pain

Dear Blog Readers,

Hello. I have been trying to find a list for the resource page of celebrities and important people from history who had chronic pain. However, since most lists only have three or so people listed, I have decided to compile my own list. I am hoping this list will remind you that you can accomplish important things, even with your pain.

1. Lewis Carol wrote Alice in Wonderland while suffering from chronic migraines.

2. John F. Kennedy suffered from intense chronic back and stomach pain.

3. George Clooney, a movie star, suffers from cervicogenic headaches.

A Couple Resources Added

Dear Blog Readers,

Hello! I added a couple of resources to the resource page. One discusses ways that chronic pain patients in college can get through finals week and the other describes mental coping techniques that are useful for very painful episodes. I would encourage you to check out both of these resources, as I have personally found them very useful.

As always, you may find these resources under the resources tab, and I will continue to add resources throughout the semester.

Thank you, and if you are in the South Dakota area, stay strong! I have heard there is a blizzard coming and I know that blizzards can exasperate pain for people with certain chronic pain conditions.

Update-1st Poem!

Dear Blog Readers,

This is just an update letting you know that I now have figured out how to set up the "published writing" page so that I can put several different pieces of writing on it. I have put one of my own poems up, but I would love to have writing from other chronic pain patients as well. As I gather submissions, they will appear on the "published writing" page.

If you are interested in submitting writing to be published on the blog, please see "submission guidelines," which is linked on the bar at the top of this website.

If you are looking for the survey, it is also linked on the bar at the top of this website, or you may access it here.

Thank you.

Lessons-Poem

Lessons

By: Leah A. (Blog Admin)

My migraines have taught me what it means

To have pain that stabs and twists at every sudden noise, every bright light,

                                                                                       

And they have shown me the beauty of those rare pain-free days

When energy radiates through me like sunlight.

Update-First Resources Added

Hello! I have now added my first few resources to the "useful resources" page. I will continue to add resources as I progress with my project.

Thank you!

Update-Submissions and Survey are Open!

Dear Blog Readers,

Hello. I am now accepting writing submissions to publish on this blog. For more information, please see my submission guidelines. I encourage all of you to submit something. I will publish poems and prose as I receive them, so keep checking for updates.

I also have opened my survey. For more information, see the survey page.


Additionally, I will add useful resources for chronic pain patients as I progress with my class project, so even though there aren't any resources listed now, there will be.

Thank you!

Surviving After the Holidays with Chronic Pain

Some Friendly Encouragement:

 January can be a tough time for people. The holidays have ended, and valued friends and family members have returned home. However, I think this time of year can pose an even greater challenge to chronic pain patients.

As a Chronic Migraine patient and a college student, I struggle with returning to college after the holidays. My body rebels against the complete change in environment, and the different holiday food I ate starts to take a toll on me. As I write this post, I am sitting in a quiet, dark room, trying to calm down the migraine I have had ever since I returned to school. I feel certain that returning to work or even re-establishing a daily return can also aggravate chronic pain. 

If you are going through anything similar,

An Update on My Progress

Update on My Progress:

Dear Blog Readers,

I wanted to update everyone on my progress. I am currently working on drafting my submission guidelines, the about page, and some other pages for this blog/website. They should hopefully appear sometime this week, so keep checking the blog. I will post an update on the front page when these things are done, and I will start accepting literary submissions as soon as I post the guidelines, so if anyone wants to start writing, feel free! (For more information about this blog and how it is part of an undergraduate class project, please see my first blog post).

Also, although this is technically a blog, this website will mostly be a literary community for people with chronic pain. I may not post many "traditional blog" posts, although you will see some occasionally.

Under Construction

Dear Blog Readers,

Greetings! This blog is currently under construction. Please be patient with me, as this is my first attempt at blogging.

For those of you who are wondering about this blog, this blog will be a community where people with chronic pain can submit and share any writing about their pain. This could include poetry, creative nonfiction, or any other relevant kind of writing. I will post the submissions I receive