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.