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