Tuesday, September 5, 2017

Self-Management: Daily Tools for a Scattered Mind

This post includes my two favorite tools for daily self-management and self-organization.

I greatly benefit from the act of physical writing and actively thinking through my schedule, needs, goals, etc.. Most people benefit from these acts. Behavioral research supports that writing down plans not only helps us better outline and commit to goals, but it also greatly increases the probability of meeting those goals. Establishing implementation intentions (when, how, where, etc.) of our plans has a significant effect on whether we meet the goals we have, big or small (Gollwitzer, 1993; Gollwitzer & Sheeran, 2006; Scholz et al., 2007; Stizmann & Johnson, 2012; Rogers et al., 2015) . It helps us to prioritize and follow through!

My Shared Resources:

I've linked my two favorite, "general", original daily printouts for managing my scatterbrain-self. They're 100% free and available for anyone who would like to try them. They're not specific to any individual needs, just general categories. Please also feel free to share your own favorite tools, and/or critiques on those I've made. 

Because this topic is one of a rather critical and personal meaning, I'm also linking the article that addresses my background for how and why I spend time learning, testing, and customizing many routines, tools, and resources for myself. I wanted to be blunt and sincere in my assessments of how critical such tools are. And to do so, that required me to share a bit about myself. (see: Self-Management of a Scattered Mind).  

For those curious, I hope you find the linked post interesting and informative. For those less inclined, please still feel free to scroll down to the linked PDFs of my favorite "general" self-management tools. They are currently stored on my google drive, though I will be changing this soon to help assure readers that they are PDFs, not random looking google drive addresses. I have full page and half page versions, for regular (A4) and small (A5) binders. I really like a little planner I got cheap from amazon, and will link it here. But I'd also love for any readers to share their own favorites!

Full Size Print Outs:
  1. Daily To-Do 
  2. Daily Schedule
Half Size Print Outs:
  1. Daily To-Do (TBD)
  2. Daily Schedule (TBD)
Half Size Print Out (Same Page):
  1. Daily To-Do & Daily Schedule

I'm also including a guide of how I use these printouts, but my guidelines may not be your guidelines :). Please give it a read if you're curious about the categories/how I use them, and consider whether you might find them helpful.

The Daily Organizational Print Outs and Categories are:
  1. Today's To-Do's
    1. PrioritiesThe most critical items that, should you accomplish nothing else, need to be done. Helps to assess what is most important and what demands the most resources. Also helps to put the lesser things in perspective!
    2. Today's GoalsWhat you want out of the day. Do you want to aim to give more compliments? Be more positive? Drive more safely? Keep up with your scheduled time? Do something artistic? Take criticism gracefully? Do well on a presentation? What are the things you want out of the day.
    3. Task List: Write down all the tasks/items that you need to get done for the day. Sometimes you can check them all off, sometimes you might have to move some to the next day. But it helps to have a list of what you need done. Add check boxes to every item, so you can cross that sucker off when it's done!
    4. Good Things: Yes, I practice Cognitive Behavioral approaches (CBT) and will always preach that we need to practice acknowledging the good things about our days. We notice bad stuff because it is upsetting and alarming. It takes practice to notice the good things as easily. So, write what's good about your day, what good thoughts you've had, what good things you think you can make happen. Maybe at the end of the day, write down the best things that happened. Make a record.
    5. Exercise: writing down goals and recording actual execution of exercise is a valuable way to not only encourage more activity and healthy living, but it helps you to have a record to track progress. Focusing on improvements, not fixed achievements, helps to foster a healthy and positive attitude towards healthier living. Tracking makes it easier to focus on those changes and improvements, rather than a fixed, non-individual measure of 'fit'. Even if you only manage to walk a mile every other day, that is 150+ miles every year, that you might not have walked otherwise. Track it!
    6. Date/Word: The day date and a newly learned word. This can be a new native tongue word (expanding vocabulary!) or a word for a foreign language. I enjoy working on both!
  2. Daily Schedule
    1. ScheduleList the hour-by-hour plan for the day. I like to have each hour listed, except for early morning and late evening. Before 7 am usually involves a fixed pattern of morning rituals, which I can easily list in that line for 'Morning'. Same for 'Evening'. But for every other time, I like to list my plans for the day, preferable the day before. It helps me know what I should aim to do, helps me better understand how I am using my time, and helps me make more realistic estimates for how long something should take. Overall, an hourly schedule helps me use my day more effectively!
    2. Assignments: I like to avoid categories like 'work/school/home', because I often have assignments for all three! I also don't like feeling like one is more important than the other. I list these separately from tasks, because most of my assignments are broken down into daily increments of finishing. By writing current assignments, you can better assign time to complete those increments in your schedule, and can even list the parts of those assignments in the task list of the ToDo Printout. It helps to know what are general 'on the docket' requirements, so you can include them in your planning.
    3. Success?: Again, I like CBT. I think it's important to practice positive thinking, in a way that is realistic and acknowledges what we do well. My assignments, task lists, schedule, etc., are often very full. So I like to write down things that I did particularly well, achieved, or went above and beyond. I like to celebrate my successes, and appreciate where I excel. That's what this box is for.
    4. Notes: Every day, I have odd little add-ons of varying importance, that end up on scrapped papers/receipts/etc., which may do better in a neat little note box. Numbers, grocery items, reminders, etc., all go in here. That way, I can look through my week and have a ready-made collection of important tidbits all in one place!
    5. Date/TIL: the day's date, and something newly learned. Go to a random TIL website or just note something interesting you learned. Writing down a name for what you've learned will help it stick in your mind!

References:

  • Gollwitzer, P. M. (1993). Goal achievement: The role of intentions. European review of social psychology, 4(1), 141-185.
  • Gollwitzer, P. M., & Sheeran, P. (2006). Implementation intentions and goal achievement: A metaanalysis of effects and processes. Advances in experimental social psychology, 38, 69-119.
  • Rogers, T., Milkman, K. L., John, L. K., & Norton, M. I. (2015). Beyond good intentions: Prompting people to make plans improves follow-through on important tasks. Behavioral Science & Policy, 1(2), 33-41.
  • Scholz, U., Sniehotta, F. F., Schüz, B., & Oeberst, A. (2007). Dynamics in SelfRegulation: Plan Execution SelfEfficacy and Mastery of Action Plans. Journal of Applied Social Psychology, 37(11), 2706-2725.
  • Sitzmann, T., & Johnson, S. K. (2012). The best laid plans: Examining the conditions under which a planning intervention improves learning and reduces attrition. Journal of Applied Psychology, 97(5), 967.

Self Management of a Scattered Mind

This article is about self-management and self-organization. I'velinked my two favorite, "general", original printouts for managing myscatterbrain-self HERE. They're 100% free and available for anyone who would like to try them. They're not specific to any individual needs, just general categories. Please also feel free to share your own favorite tools, and/or critiques on those I've made. 

The Value of Planning:

Implementing daily goals and plans helps us to better achieve our plans and goals, both big and small. Behavioral research supports that writing down plans helps us: (1) better outline and commit to goals and (2) greatly increases the probability of meeting those goals. Establishing implementation intentions (when, how, where, etc.) of our plans has a significant effect on whether we meet the goals we have, big or small (Gollwitzer, 1993; Gollwitzer & Sheeran, 2006; Scholz et al., 2007; Stizmann & Johnson, 2012; Rogers et al., 2015) . In summary? When we specify our plans, it helps us to prioritize and follow through!

What does this have to do with me?

I openly preach how much I benefit from the act of physical writing and actively thinking through my schedule, needs, goals, etc.. The act of writing my plans is integral to me being able to meet them. A less commonly known fact about me, is that I was diagnosed with ADHD at the age of 5, again at 14, and again at 18, 20, and 25. So, five times in total. Some of these assessments were for self-confirmation, but I also grew up at a time where many were still convinced ADHD was not real, or that it did not affect girls much, and/or that everyone 'grows out of it'. I can say this much--I did not grow out of it, and I am not alone in that (Kessler, et al., 2006). 

ADHD is really a cluster of different 'executive function disorders', which means it's a broad term for people with neurological issues that impede the structures/functions of attention, motivation, planning, and executing behavior. In layman's terms? The command center that controls conscious thought/planning works a bit different. Different researchers might disagree in the different sub classifications of ADHD, or what causes it, or why it resolves for some and not others. But I'm not going to talk about that. I'm going to talk about why my ADHD forced me to develop seriously structured self-organization and self-management skills. Because they are certainly not something my brain does on its own!

What I Have Learned, From ADHD:

I do not see my struggle with ADHD as an objectively good or bad thing. ADHD is a facet of myself and my personality. What makes it a 'disorder' is not that it's a problem alone, but that it makes functioning in a modern society geared toward the efficient 'average', a bit problematic. So I work hard to make it less problematic. I majored in neuropsychology and did my thesis on ADHD treatments, and I have a passion and fascination for the multi-modal approach (multiple disciplines for management). For my own self-care, I practice meditation, utilize numerous cognitive behavior treatments (CBT) and applied behavioral analysis, do yoga, use medication, and routine, routine, structure, and routine.

Dealing with illness and the demands thereof, ADHD could and does sometimes make self-management more frustrating and difficult. A lot of my differences were/are taken for granted; I lack some abilities that are seen as defaults for most adults. And, for most of my life, there was not much available for someone missing those defaults. I did not have resources to cope, and it made a difficult situation harder to manage. At the height of my sickness and the resultant complications, I was at a doctor's at least five times a week. I was in pain, tired, and filled with anxiety and depression. Remembering all the extra things I needed to do, learning new diets and daily routines, getting to all the appointments (especially on time), and regularly following through with all the therapies and medications, was hard. Hard for anyone, truly. But if I wanted to overcome the beast of unmanaged chronic illness and live, really live, I had to figure out a way to make it work. And I needed to learn how self-manage first (Lorig et al., 1999).

So I sat down, and I made plans. Plans and lists. And strategies. Coping methods to try. I looked at what I struggled with most and came up with countermeasures to make them more manageable. I studied. The amount of articles, books, and reviews I acquired could fill a trunk. Reading became a second job. I spent months and months trying and scrapping new approaches and methods.

Sometimes it felt like a waste of time. I already felt a cold reality of having zero energy and zero time, so I could not understand why I was pouring so much effort into organizing that mess. But I also understood that part of that zero time and energy was due to my inability to make use of the mental and physical resources I had. And I needed to change that. Really, it was part of who I am: I love brains, and I knew mine was not operating at its full potential. I knew I deserved better. 

All that study and my education helped me arrive a lot of conclusions. I need structure. Strict structure. A regular routine. I have to regularly condition my mind to work the way it works best. I cannot just expect my brain to work differently than it does. I have to honor the needs I have and work with them, not against them. I need to be willing to spend time managing myself, not criticizing myself. Slowly, I came up with the methods I use today to make myself the most functional me. And I can 100% say that they are some of the most critical changes I made for making the moderately healthy person I am today.

Why I am Sharing

For a site dedicated to educating and supporting those with illness, I am guessing this may seem like a rather self glorifying and self-focused post. Maybe it comes across as breaking away from the new mantra of this site--to focus less on myself and more on all sorts of people. However, I chose to write this with myself as an example, because I want to be blunt with how critical self-management has been in living a more efficacious and happy life (Wagner et al., 2001). I wanted to be honest with how hard I have struggled to incorporate these valuable changes into my life. Such changes and adjustments did not come easily, and they are still a daily effort. They cannot be an afterthought, or something to deal with once 'everything settles down'. Learning to self-manage is instrumental in establishing a gradual, if tenuous, settling. 

For myself, dealing with my ADHD, anxiety, etc., has been just as important for healing as directly treating physical illness. Self-management is critical for managing illness, and it also does not come easily for everyone. And I want to remind people that it's okay if it's a struggle, it's okay if they need tools and help, it's okay if it does not come easily or quickly, and it's okay if you're not sure where to start. I certainly did not. I felt weak and stupid for not knowing what to do. Through all my struggling, I realized I was wrong; I was anything but weak. That real strength is in pursuing a goal and working towards it, not starting out with everything in hand.

If sharing my journey in learning self-management helps others feel a teeny-bit less alone, I am okay with the possible downside of shining a spotlight on my less-than-perfect self. If it helps motivate just one person to give some resources and tools a shot, then I am happy, and hopefully they will be happy too :).

My Hopes for Sharing Self-Management Resources

I wrote about myself because I also to share some of my self-organizational tools, in hopes that they may be of help to others. Some may find them helpful, and I want to earnestly endorse trying different tools and resources for working out a method for better self-management. My printouts might perfect for one person's self-management toolkit, and absolutely mismatched for another's. People have different circumstances and benefit from various coping methods for dealing with the incessant demands of life!

Additionally, in recognition of the variations in circumstances and needs, I am starting by sharing some of my most general tools: my dailyto-do list and daily schedule printouts. 

I'm not a graphic designer, and these tools can take me a while to make in a general, useful format! So, I will start with sharing my general ones, and then work towards more circumstance-specific versions (e.g., sleep diaries, treatment records, etc.). They're free for any personal use. Try them out, print them, copy them, share them, do whatever you like! (Except trying to charge someone else for them--that's not nice). Also, feel free to share any resources and tools you already like!

I hope you can give daily planning and goal setting an earnest try. They have been an invaluable coping method for myself, and truly help my daily life. If an absolute scatterbrain like myself can eventually make use of some sort of routine and planning, I can't help but have faith in the potential for us all!


References:
  • Gollwitzer, P. M. (1993). Goal achievement: The role of intentions. European review of social psychology, 4(1), 141-185.
  • Gollwitzer, P. M., & Sheeran, P. (2006). Implementation intentions and goal achievement: A metaanalysis of effects and processes. Advances in experimental social psychology, 38, 69-119.
  • Kessler, R. C., Adler, L., Barkley, R., Biederman, J., Conners, C. K., Demler, O., ... & Spencer, T. (2006). The prevalence and correlates of adult ADHD in the United States: results from the National Comorbidity Survey Replication. American Journal of psychiatry, 163(4), 716-723.
  • Lorig, K. R., Sobel, D. S., Stewart, A. L., Brown Jr, B. W., Bandura, A., Ritter, P., ... & Holman, H. R. (1999). Evidence suggesting that a chronic disease self-management program can improve health status while reducing hospitalization: a randomized trial. Medical care, 37(1), 5-14.
  • Rogers, T., Milkman, K. L., John, L. K., & Norton, M. I. (2015). Beyond good intentions: Prompting people to make plans improves follow-through on important tasks. Behavioral Science & Policy, 1(2), 33-41.
  • Scholz, U., Sniehotta, F. F., Schüz, B., & Oeberst, A. (2007). Dynamics in SelfRegulation: Plan Execution SelfEfficacy and Mastery of Action Plans. Journal of Applied Social Psychology, 37(11), 2706-2725.
  • Sitzmann, T., & Johnson, S. K. (2012). The best laid plans: Examining the conditions under which a planning intervention improves learning and reduces attrition. Journal of Applied Psychology, 97(5), 967.
  • Wagner, E. H., Austin, B. T., Davis, C., Hindmarsh, M., Schaefer, J., & Bonomi, A. (2001). Improving chronic illness care: translating evidence into action. Health affairs, 20(6), 64-78.



Monday, April 10, 2017

Pain is a Warning Signal

This article is a recent addition to my Power of Belief series (an excerpt for Part III). It is a simplified explanation of what pain is and how pain signals 'work'. For those dealing with short term or chronic pain, or trying to learn more about pain in general, I hope you find it a useful overview.

What is Pain Sensation and Pain Perception?                          

Pain is a warning signal. Pain is an alert, which our body uses to warn us about danger and harm. Pain is a fast, unpleasant, intense message that grabs our attention and shouts, "Something is wrong!" These alerts are meant to be uncomfortable, even awful, because their purpose is so incredibly important. They are the quickest way for our body to tell us, 'you are being harmed'. And they are a powerful motivator to avoid potential danger.

Pain is a process. While pain feels instantaneous, it's actually just very fast. Our body alerts us to pain using multiple steps in a special alert system. This system aims to tell us about pain in a way that is (1) fast and (2) informative. To meet these goals, pain sends multiple alerts, which range from simple (immediate) to complex (less immediate). They also operate on different levels of consciousness, working consciously, subconsciously, and unconsciously (Young, 2005). Pain operates at these different levels and complexities for our benefit, in order to help our body and mind make better judgments for injuries and dangers (Flor et al., 1990).

Pain is a manifold message. Pain alerts work in tandem for most injuries. For example, our body often moves from a painful source, like fire, before we even feel it! Your body can process pain more quickly than your mind, so it uses that information to act fast. However, your mind will feel it soon. And that sharp pain of a fresh burn can help remind you to protect your new injury. Extended pain from a burn also helps to encourage keeping it clean and bandaged. For manageable and short-term injuries, pain signals can help you to take proper care and heal faster! Unfortunately, if the source of pain cannot be helped or healed, pain can become problematic and debilitating.

Pain can be helpful. While pain feels bad and is definitely something we wish to avoid, it ultimately functions to improve health, wellness, and lifespan. Pain is valuable, when it is functioning properly. Your body and mind both use pain to guide goals and actions. Pain gives immediate consequences for injury, to help prevent our bodies from getting hurt (or hurt worse), and it helps reduce loss of limb or bodily function (Chapman et al., 2008). As such a critical warning system, its alerts will be loud and the mind is attuned to sensing them. There is even research that supports that pain can intensify when we try to suppress it/resist it (Turner et al., 2002). Pain wants us to 'get' its signal.

Consider zombies in popular shows and fiction; zombies are often unconcerned with limbs getting injured or even falling off. Without pain, they can simply ignore these losses, and their mobility suffers for it. Without basic warnings, their bodies quickly fall apart.

While pain may seem a nuisance, its signals are extremely valuable for our well-being and survival (when properly functioning). How does the process work though, and why is it possible for it to 'go wrong'?

Pain has its uses: it warns us when something is harmful,
and it helps us take care of injuries while they heal

Springtime Announcement: Site Updates

Sunshine and Spring
Hello everybody, and happy spring! After a long, long winter, I have been loving seeing the sun again. I hope you have been able to enjoy and see the sun as well! It's a great motivator for me to get outside and exercise (even a little bit).

Hope and Sunshine (credit: unsplash.com)
Site Redesign Status
I appreciate everyone's patience with the website redevelopment and re-organization. From volunteers for contributions to sustained visits and readers, it has all been so encouraging to receive. I cannot wait to debut the new format, and I truly hope it is beneficial to everyone who visits.

There are still kinks to be worked out, and I am working diligently to smooth them down. Learning coding has been a real journey, and I know that some of the broken links have been more than frustrating. I am also still arranging different contributions from those who are interested. If anyone wishes to contribute, whether one time or repeatedly, or has ideas they wish to share, please let me know! I am working to make this site less me-centric, and ideas from others are key to this goal.

A lot of time and efforts have been refocused for this site's purpose, and it is exciting to work to turn it all back outwards. The ultimate goal is to provide resources and hope to others. Hopefully, the improvements to content and site design will make it all worth it! Thank you, for continuing to value and visit this work. Your support is everything!

Writing for the Meantime
Until I can finalize the behind the scenes, I will resume writing short and/or 'opinion' type posts. While these may be less informative than my more research-oriented than my more time consuming posts (such as those on pain, depression, optimism, etc.), I think they can provide some much needed content.

Little bit 'o writing (credit: unsplash.com)


Wednesday, December 14, 2016

Under Construction


The Bedhead site is under construction! 


I very much apologize for the inconvenience.


Until everything is smoothed out over the next week, you may have some difficulty navigating the site. There are 'placeholder links' in the sub-navigation menu that are stubs at the moment. If there is anything you are struggling to find, please email me: Bedhead@Bedriddenhead.com, and I will email you the appropriate link. 

Thank you so much for your patience and continued support! I am greatly looking forward to all of the upcoming improvements, and I hope they are helpful and useful to you!

Wednesday, December 7, 2016

Health Care

I've been working on a series of posts to share in an orderly/semi-regular way these past few months. For those unaware, I am working to further my education and obtain a more advanced degree. Studying while working, dealing with my ever changing health, and trying to write a book, has kept me more busy than I know how to cope with! I am really looking forward to working with everyone that has expressed interest in the site though, and I am looking forward to the improvements they bring!

Despite the lack of time for more formal posts, I will be sharing some more informal information as often as I can. For Americans particularly, I am concerned about changes in health care and want to offer what information/support I can. If this looks familiar, I am sharing these words as often as I can.

---

To everyone that has experienced anxiety regarding the political climate: Please take care of yourselves. Be kind to yourselves. Try to do something nice for yourself.

Many Americans with chronic conditions are frightened about the possible effects this election cycle will have on their health care. Regardless of who you voted for, the truth is that those with chronic illness and disabilities are often lost in the cracks for acceptable health care. You are not alone.

Take deep breaths. Take stock of your location and your state's current options/plans. Many communities have *free* charities/non-profits that provide assisting services. They can help you with your immediate needs. They can provide you information to help you with coverage for this upcoming year.

I cannot comfortably make any statements about what changes are coming for health care in America. I don't know what plans the House, Senate, or President Elect have.

I do know that changes are certainly coming. I can't say which or how or why--only that the current design does not have long term feasibility without restructuring and political cooperation. We cannot even know if the current design could work due to congressional starving, and we do not know if a future plan will work either. There is going to be change.

Change also means opportunities. You do not have to quietly surrender to a future without care. Look up your state/local representatives. Call them. Write them. Tell them of your concerns. Sign petitions that address your concerns. Use peaceful and safe methods to rally those around you to your cause. Try not to get lost in party lines. Whether your representatives 'represent' your politics or not, they were elected to represent *everyone*. Tell them how their policies and/or votes affect *you*.

You cannot succeed if you do not try. You can choose to reject helplessness by taking action. And if you struggle valiantly, you have won at least one battle.

Those who are not at risk for losing your health care, please be aware and considerate of risks others are facing. If you support change, try to advocate/support change that does not leave others without care. If you support those in office, but maybe not all their plans for health policies, let them know. It is empowering to be involved in the political process. And regardless of the current climate's effect on you, it is always possible to be on the other side.

My page/site/email have and always will be a place for people struggling. For those faced with challenges, illness, depression, and/or pain, I will do my best to offer comfort and information. I might be limited in what I can do, but I try my best to offer what I can to anyone that needs it. I do not care where you live, who you vote for, or who you support. I care about you and will do my best to pass on my knowledge and compassion.

Sunday, December 4, 2016

Request for Website Volunteers

I am looking for volunteers!


The site is under revision and is going to be redesigned/expanded. 


Anyone with possible interest in contributing to content of this website, short-term or long-term, please email me at Bedriddenhead. All time, web, and written contributions will be credited appropriately. Advice and critiques are also always welcome.


What Makes This Website Worth Helping:


This site has value as an information resource for individuals with chronic pain and illness. It is unique in its efforts to share both personal and general resources for medical information, using references and resources, while limiting medical jargon. 

Medical science uses its own language and terminology. Sharing resources in a personal, non-medical format can help arm people with valuable information for their well-being and physical/mental health. 


The current Bedriddenhead website design limits the ability of this site to provide information to relevant individuals. The current content is also too limited to a single individual (me). While my studies and work facilitate my work on this site, they also limit the time and effort I can put in. My background is in writing and science, not web design! I have also had some recent health and family issues, which have limited my time on the site. With help, I want to expand this site to make it more useful to others. 

This site has been an invaluable volunteer experience for me, and I wish to extend that opportunity to others. My physical limitations have impacted my ability to volunteer and contribute via more traditional methods. Yet this site has been a consistent platform for me to share my talents in a meaningful way. There are other talented writers, researchers, and bloggers I wish to include! 

While older posts are more personal, the main purpose of this site is to share scientific information in a variety of formats. To help inform individuals that are struggling with illness and pain (whether they have a scientific background or not). Anyone who is interested in furthering that goal, I ask you to please contact me.

The Current Need:


I am restructuring and improving this site and looking for anyone with interest/experience with:


  • Web Design
  • Graphic Design
  • Art
  • Editing
  • Writing
  • Medicine and/or Science 
Help is not limited to those items. If you are interested, please email me

Even if you are unable to make any commitment but are still interested in helping short-term, I appreciate any help that you can give. I understand everyone has limitations for time and resources. I understand this is not a major website. I just want to help the people that use it, and I appreciate any efforts put towards that end. 

I make this request with the mindset that any contribution will be appreciated. Even if you only have time to email me tips, I will appreciate and value the effort put into such an email. 


Goals for the website improvement include: 


  • Fixing site navigation and design
  • Redesigning appearance
  • Reviewing/editing existing content
  • Reorganizing existing content
  • Prioritizing informative/non-personal posts
  • Increasing post number/rate
  • Integrating more contributors (Repeat and Guest Contributors)    


Guest Contributions are Welcome:


Guest writers are being incorporated into the redesigned website. This includes stories and informative posts.

Stories about others' journeys are being incorporated as regular features in the future site. All submissions will be reviewed for approval, prior to publication. Those published will be credited and may choose how/if they wish to appear in their submission. Pseudonyms are welcome. If you are interested in sharing your story, but struggle with writing, please contact me for possible options.

For those interested in contributing as informative posters, one-time and long term contributors are both welcome. Those with education or careers in relative fields are especially encouraged to inquire. Any medical information is shared as non-medical advice, whether contributors work in a relative field or not. I welcome experienced/inexperienced writers, prior publication is not necessary. Cited references are necessary for submission. All submissions are reviewed prior to publication.

Again, the email for this website.


The Current Status of this Site: Why I am Seeking Change 


I am working on redesigning and repurposing this site, to better enhance its value as an information resource.

For those unfamiliar, this is a non-medical advice site, which aims to share health information, resources, and publications in layman's terms. Some posts review research, some give tips on how to prepare for appointments. This site has been a wonderful way for me to contribute to the chronic illness and chronic pain communities. Chronic illness, endometriosis, IBD, asthma, CTDs, anxiety/depression, and pain communities have all been valuable groups for this site (and myself). 

Helping people affected by pain and/or illness has always been the goal for this website. 


I started with the (realistic) goal of reaching or helping just 'one' person. I wrote about my experiences and thought it might make someone feel less alone. After learning more about others, talking with readers, and switching to a more informative approach, I eventually met that goal many times over, and I began to appreciate what an amazing resource a website like this can be. 

This website has allowed me to have an impact I would not have had otherwise. Even during times of sickness and disability, this site has given me the opportunity to reach out to and inform others like me. Working on these articles, sharing my story, and communicating with readers, is such a privilege, as well as an opportunity.  

I can't fulfill these goals alone.


Writing this post, I actually had to fight a strong urge to use my time on one of the dozen posts I have been working on for months. Though if you have been checking the site, you'll notice why I say 'working on' not 'posting'. I have done my best to maintain the Facebook Page, as well as returning messages, emails and phone calls for help, but the site has definitely suffered from lack of activity. My work, school, and health issues are a both a resource and drain for the site. I feel overwhelmed with the resource I started. I want to change this.

I wish to expand the potential this site has. I want to make this site a more usable and valuable resource. I wish to make this site everything it can be; for those who visit, read, write, or subscribe, anyone who has found value in this site, I wish to make it better. I don't want to help just 'one' person--I want to help anyone who chooses to visit this site. Whether through google or shares, I want anyone who comes here to find value in this site. I want to make it time well spent. And I recognize there is only so much I can do to make that happen.

Anyone who has interest in this goal, I would love to hear your ideas or possible methods of contribution. This site has been a precious opportunity for me to contribute to various illness and pain communities and individuals. I love volunteering, and my physical limits can sometimes prevent me from doing more traditional projects. While there are many who do far more work than I, the efforts I have put into this website has been a way for me to help.  If anyone else thinks they could find value in such a contribution, I would love to involve you this site's future. 

Tuesday, February 16, 2016

Chronic Pain Patient Crisis and NPR-Here and Now: Where Chronic Pain Patients Fit Into The Opioid Crisis


I was recommended an excellent interview and wanted to share a link and some discussion. The interview and its points are a much needed highlight of the negative effects that new pain management restrictions and guidelines have had on chronic pain patients, and I highly recommend it as a worthwhile perspective for any listener.

Interview Link: NPR-Here and Now: Where Chronic Pain Patients Fit Into The Opioid Crisis

Note: for resources included in this discussion/review, please see the list at the bottom. Critique, comments, and response are (as always) welcome.

The use of opioids in pain management is under attack, as governing bodies in the US desperately seek to reduce misuse of pain prescriptions and prescription drug overdoses. The CDC, DEA, and FDA have been working towards increasingly restrictive opioid guidelines in recent years, aiming to reduce the number of prescriptions written. As these governing bodies seek to reduce the significant epidemic of prescription pain overdoses and deaths, numbers continue to escalate and chronic pain patients are suffering expansive negative changes in their health care.

How do guidelines affect the broad world of medicine? Insurers, pharmacies, clinics, doctors, healthcare providers, etc., operate in a social-legal environment where the needs of a patient are balanced against laws and guidelines for practice. This continuum exists for practical and beneficial cause--without general guidelines of practice, a patient could not trust their doctors to consistently abide by safe and commonly accepted health practices. Medicine is constantly evolving and changing, relying on expansive empirical, peer-reviewed, and clinically tested treatments; healthcare providers strive to maintain up-to-date care and accreditation by acting within these advocated practices, and we as patients can trust in consistent safe care.

Guidelines for treatments vary according to (1) the practice of providers and (2) diagnoses of patients. Complications arise when different classes of patients are identified as same/similar and regulated the same. For an obvious (and unrealistic) example, consider if pregnant and nonpregnant women were regarded the same by regulation boards. Doctors would be expected to treat pregnant women as not pregnant, even when considering teratogen associated prescriptions, or they will be faced with discrimination fines/review boards. As a result, the rate of birth defects skyrocket as unsuspecting patients use treatments they would otherwise avoid. Or, if the opposite were true, with women treated as pregnant regardless of reproductive status, critical medical treatments with zero contradictions could be withheld without cause. Hormones, antidepressants, pain relievers, mood stabilizers, anti-inflammatories, and many more medications would be unavailable to women on the basis of assigned pregnancy capacity. Neither outcome would be desirable. Thankfully, current guidelines generally recognize such obvious discrepancies; unfortunately, serious consequences arise when they do not. And it seems patients in pain seem to be veering into their own impractical groupings.

Prescription drug overdose is the driving force in regulation changes seen in recent years. The epidemic is not to be trivialized--according to the National Institute of Drug abuse, total deaths due to prescription drug overdose increased 2.8-fold between 2001 and 2014. In response to the overdose epidemic, the FDA and CDC has sought to increase restrictions on prescription guidelines of opioid pain medications. But despite increasingly restrictive guidelines, deaths continue to increase--and chronic pain patients say they are feeling the burden of the changes.

While number of deaths is deservedly a focus of the regulatory response, it seems to be the only focus, and guidelines fail to distinguish circumstances leading to overdose. In fact, they often seem to glance over cause, in favor of simply reducing access. Recognition of specifics for overdose death may seem sterile or harsh, but regulations for any product/action must consider differences leading to misuse/abuse in order to be successful in application and reducing negative outcomes.

For a well known example, age is a factor in the availability of vehicle licensure. In the USA, you must be at least 16 years old to apply for one. You must pass inspection regardless, but certain ages are restricted from even trying to apply. A car can be equally deadly in the hand of an licensed adult, but age of user has predictive value in reducing risk of misuse and negative consequences. If driving license restrictions were instead dependent marital status, the value of that regulation would be far lower. Sure, it would still exclude teens, reduce number of wrecks, and help prevent toddlers from driving, but it would also prevent many unmarried, productive, working adults from efficiently functioning in and contributing to society. As an unintended effect, it may motivate otherwise law-abiding, unmarried citizens to drive illegally, without license, practice or knowledge, in rebellion to the restriction.

In regard to regulations on pain management treatment, rather than acknowledge factors shown to help predict possible misuse, current guidelines functionally consider all pain patients equally susceptible. It requires abiding providers to treat all patients as addicts in hiding. Factors leading to overdose are not explored, doctor autonomy and experience with a patient is reduced in treatment decisions, and the general action is to unilaterally reduce opioid treatment across all chronic pain populations. This approach not only fails to recognize potential patient population differences, but it also glances over the individual percentages of overdoses that we see now. This approach does not address the significant problem of overdoeses that are not based in addiction, such as (1) intentional patient overdoses in pain-related suicide or (2) patients desperate to stop insufficiently managed pain (and thus use too much of their medication in efforts to control their pain).

Research supports that chronic pain patients (especially ones with excessive, unmanaged pain) are at significantly higher risk for suicide. These patients are also more likely to misuse medications when their pain is not sufficiently addressed in their current treatment (e.g. taking increasingly numerous pills because their prescribed dose does not make the pain bearable). Maybe restricting clinical access would reduce their use in the pain population (at least by safe and supervised means), but the outcome would likely be increased suicides by others means. Desperate users will switch to an OTC or illegal overdose risk as they struggle to manage their debilitating pain.

Another, likely more relevant, fact that is ignored by DEA and CDC regulations, is that studies support that the majority of OxyContin addicts seeking addiction treatment have never actually received a prescription (see Carise, et al.). Abuse of prescription opioids tends to happen concurrently with other illegal substance abuse, rather than within the sphere of patient treatment (Wesiner et al., 2009). This supposed link between pain patients and prescription addiction is not even under proper evaluation by relevant governing bodies. By ignoring individual sources of the problem, the value of regulation is fundamentally limited. It's another case of political quick fixes to improve the surface of a problem, ignoring long term potential effects outside the primary goal.

The lack of discussion on such pain-related overdoses is reflective of the problematic predisposition of these regulatory bodies: to see opioid treated users as one cohesive group, rather than a diverse population that includes different types of chronic pain patients seeking sufficient treatment (both responsible and irresponsible). The unilateral nature of current and proposed guidelines disregards differences between various conditions and patients and thus flips the healthcare balance to a focus on legal concerns, reducing a doctor's ability to draw on experience and study to treat different patients with different needs and risks.

These governing bodies state they aim (and I believe they desire) to not negatively affect chronic pain patients, but they seem unwilling to acknowledge the consequences their guidelines carry. And problems go beyond the lack of alternative treatments (which their guidelines imply exist in abundance). The designs do not adequately distinguish between addicts and chronic pain patients or recognize differences between patients and conditions that may require opioid treatment. For example, the major distinction applied in pain treatment is cancer and non-cancer patients, (not anatomical location, duration, symptoms, etc.), and guidelines systematically group all non-cancer patients as needing less pain intervention and as being equal in general pain severity. Their categorical approaches are far too general to be advocating such a serious restriction of treatment--people are going to be negatively affected, including those who have reliably demonstrated responsible use.

Opioids are not a panacea for pain patients. They fail to be the magic solution for intractable, incurable pain. Some conditions do respond well to alternatives. But, for many conditions, there are currently no existing alternatives that manage pain with even near comparable efficiency. In a meta-analysis conducted by Furlan et al. in 2006, over 41 chronic pain treatment studies were reviewed and showed that evaluated opioids significantly outperformed all studied placebos and non-opioid alternatives. Restricting availability will leave patients with less efficient pain treatment. No matter what the ultimate goals of restrictions are, it's dishonest to ignore or gloss over that unavoidable outcome.

Lobbied guidelines and laws regarding opioid prescription cite concern for development of addiction in chronic pain patients. This is a valid and real concern, as some patients do misuse their medications or violate doctors orders. Patients or advocates that gloss over that concern are opening themselves and others to the vulnerabilities and complications of addiction. The problem is, in their methods of describing addiction risks, they lack transparency of sources and do not disclose that there is currently no long-term research on the potential of long-term addiction in the chronic pain population. Yet they constantly make statements about long-term effects, as if that research has been conducted. Many clinical studies conflict on the severity/existence of the risk for addiction in long term, and the meta-analysis mentioned previously found no reported increase. No proper research has supported their cited risks of long term use. They likely exist, but they're not understood nor researched in a manner that could help patients prevent and manage such complications.

Every study I have read on the matter disparages the lack of adequate research in regard to the relationship between chronic pain treatment and opioid addiction. This does not mean a connection does not exist, opioid addiction is a real and serious risk to be aware of, but the extent and nature of the relationship between long term patient use and addiction is not sufficiently supported, explored, or funded. Rather than evaluate what leads to addiction in a treatment setting and how to manage the risk, regulations choose to limit availability to limit number of users, thus limiting total overdoses. Limiting prescriptions may change the number of patients filling prescriptions, but it does not change the percentage of patients or users suffering from addiction and it ignores the lack of research/interest into the causes leading to addiction. And, as evidenced by current statistics, overdoses have only increased despite increased restrictions. It's like a bandaid on a cancer patient: ignoring real intervention in favor of visible 'fixes'.

Rather than just limiting patient access, factors and risks should be the guiding principle in regulations, and regulation should aim to further identify risks for future patients. Psychological and physiological susceptibility to addiction is as significant with opioids as it is with other potentially addictive substances. For example, drinking alcohol is a common behavior in the United States, with about 87% of adults partaking, according to the National Institute of Alcohol Abuse and Alcoholism. But despite the significant addictive qualities of alcohol, less than 8% of drinkers are considered disordered/addicted in their consumption. The difference between a casual drinker and an alcoholic is not a tragic strike of chance; choices, experiences, social environments, physical traits, genetic makeup, and many more personal aspects all combine to determine an individual's susceptibility to the addictive qualities of alcohol.

Studies on chronic pain patients reveal a similar story, in that individuals vary on likelihood to abuse a substance (See Turk, Swanson, & Gatchel, 2007: Predicting opioid misuse by chronic pain patients). In fact, similar to general population (i.e., those who don't use pain killers), individuals with previous substance abuse are the greatest predictive factor for opioid abuse. Other factors, such as type of condition or length of treatment, are not recognized as valid or reliable predictors for whether someone will abuse their prescriptions. Regulations should focus on identifying and enforcing applicable differences between patients which responsible use and those that abuse their prescriptions. Lowering numbers available serves to disproportionately cripple patients that have demonstrated no problem behaviors and depend on such medications for daily living function. Education, awareness, study of risks, and restrictions based in real life application are used for recreational drugs such as alcohol--medical treatments for life altering conditions should be approached with at least the same level respect and practicality.

This is getting incredibly long, so I will try to summarize my view as this: 

Guidelines and regulations have restricted opioid prescribing for over a decade, but delinquent/unconcerned practitioners and addicts continue to increase distribution and access to powerful and addictive narcotics. Response does not utilize or consider investigating patient qualities leading to abuse and overdose. Restrictions have not stopped the escalation of behaviors that lead to increased deaths and tragic loss. Failure of restrictions does not support an increase of further restrictions. It calls for a serious reassessment in approach and a more involved response to the problem. And it requires a more detailed investigation/application into the risks for development of harmful addictions.

These new 'guidelines' have already had real effect in the pain management community, and calling them mere suggestions ignores the legitimate concerns doctors have for maintaining accreditation. These guidelines affect treatment. My pain management clinic, which has actually expanded and is considered a well-respected multidisciplinary practice, is now required to treat all patients like addicts. Every patient is required to submit to monthly urinary analysis and all patients are required to sign an agreement to not consume any alcohol or marijuana, despite both being legal in the state. Patients that previously received prescriptions for medical marijuana were forced to switch treatments or clinics. Costs and  frequency of required care increased, all in hopes of appeasing new guidelines. My pharmacy was forced to reject my regular, low-dose pain prescriptions because corporate policy had switched to adapt to the proposed CDC guidelines. My wonderful pharmacist managed to advocate a temporary extension (as she knows I adhere to a contract and communicate any/all changes to my clinic) but was unable to continue filling them. The cause of change? I am not a cancer patient.

I am a patient that works with my provider to maintain the lowest treatment possible. I don't like being on these medications, I use transdermal low-dose approaches because I dislike the side-effects of pills. My doctor actively strives to help me find and maintain the minimum pharmacological intervention required to allow me to function in day to day living. I'd rather not take any drugs, but I do because I have no other choice. Even with non-opioid treatments, my body cannot tolerate the combined pain of my disorders and nerve damage. Before proper pain management, I only wanted to die. Now I get to live.

Please, when considering the impact of these guidelines and laws, consider the impact it has on the people striving to overcome their destructive conditions with the tools available. Consider donating to research that seeks to study the connections between opioid addiction and prevention. Consider supporting investigations into alternative treatments or increasing availability of such treatments to those in need. Consider working to improve education and awareness of opioid addiction and resources to treat it. Whatever you do, please do it with thought and deliberate action, and consider the outcomes for those affected.

Resources for this post are included below, with links to relevant topics and studies where available without paywall. Proper footnote numbers/links will be added when I figure out how to HTML.
For those struggling with opioid addiction, please do not wait to get help, call 1-800-755-9603 for the nearest treatment center and/or help from trained addiction counselors. If you are considering suicide or are at risk for self harm, please call the National Suicide Prevention Lifeline at 1-800-273-8255.
To read more on perspectives of chronic pain patients regarding regulations and guidelines for pain management, check out the Pain News Network and their response and survey of affected pain patients.
The CDC and FDA are underfunded governing bodies that lack a sufficient number of employees, citizen accessibility, and political support. My disappointment with their actions in this matter does not change the significance of their function or importance in disease prevention and proper drug approval processes. Increased resources and management could result is more attentive regulation.


https://www.drugabuse.gov/related-topics/trends-statistics/overdose-death-rates

http://www.cdc.gov/drugoverdose/prescribing/guideline.html

http://www.painnewsnetwork.org/

http://hereandnow.wbur.org/2016/02/15/chronic-pain-patients-opioids

http://hereandnow.wbur.org/2016/01/13/opioid-prescriptions-after-overdosing

Cheatle, M. D. (2011). Depression, chronic pain, and suicide by overdose: on the edge. Pain medicine12(s2), S43-S48.

Tang, N. K., & Crane, C. (2006). Suicidality in chronic pain: a review of the prevalence, risk factors and psychological links. Psychological medicine,36(05), 575-586.

Reddy, B. S. (2006). The epidemic of unrelieved chronic pain: the ethical, societal, and regulatory barriers facing opioid prescribing physicians. The Journal of legal medicine27(4), 427-442.

Furlan, A. D., Sandoval, J. A., Mailis-Gagnon, A., & Tunks, E. (2006). Opioids for chronic noncancer pain: a meta-analysis of effectiveness and side effects. Canadian Medical Association Journal174(11), 1589-1594.

Tang, N. K., & Crane, C. (2006). Suicidality in chronic pain: a review of the prevalence, risk factors and psychological links. Psychological medicine,36(05), 575-586.

Carise, D., Dugosh, K. L., McLellan, A. T., Camilleri, A., Woody, G. E., & Lynch, K. G. (2007). Prescription OxyContin abuse among patients entering addiction treatment. American Journal of Psychiatry.

Weisner, C. M., Campbell, C. I., Ray, G. T., Saunders, K., Merrill, J. O., Banta-Green, C., ... & Von Korff, M. (2009). Trends in prescribed opioid therapy for non-cancer pain for individuals with prior substance use disorders. Pain145(3), 287-293.

Dworkin, R. H., O’connor, A. B., Backonja, M., Farrar, J. T., Finnerup, N. B., Jensen, T. S., ... & Portenoy, R. K. (2007). Pharmacologic management of neuropathic pain: evidence-based recommendations. Pain132(3), 237-251.

http://www.niaaa.nih.gov/alcohol-health/overview-alcohol-consumption/alcohol-facts-and-statistics

Turk, D. C., Swanson, K. S., & Gatchel, R. J. (2007). Predicting opioid misuse by chronic pain patients: a systematic review and literature synthesis. The Clinical journal of pain24(6), 497-508.

Michna, E., Ross, E. L., Hynes, W. L., Nedeljkovic, S. S., Soumekh, S., Janfaza, D., ... & Jamison, R. N. (2004). Predicting aberrant drug behavior in patients treated for chronic pain: importance of abuse history. Journal of pain and symptom management28(3), 250-258.

Sunday, January 24, 2016

Update and Forefront

Avoidance tactics are 'great!'. They reduce exposure, prevent encounters with a stressor, allow you to pretend that the problem does not exist, let you sing 'la la la' while ignoring responsibilities... all as the issue at hand snowballs into a bigger and bigger problem. Of course, anyone could only assume avoidance is a foolproof method for reducing stress and increasing productivity.

It sounds ridiculous, but we all do it all the time. We act like we believe that is the truth. Perhaps in response to different things and different problems, each person susceptible to unique stressors, yet the same weakness pervades human nature. We have a fight or flight response to stress, and our mind likes to tell us that both are equally valid options. As if we truly believe that avoidance works.

As I was struggling with another one of my 'I'll avoid this till it goes away' moments, I thought of my struggle with this site and the proper upkeep it deserves. I spend time researching and learning, and I am eager to share what I learn, but I haven't been putting the work into it that it requires. The longer I put it off, the more defeated and stressed I feel.

A problem can never just go away. It either grows in size in the real world, or anxiety grows from not facing it. Or both. Or we pass the buck onto someone else to cope with (though never entirely). We can never run away from them, even if you can manage it temporarily. Our decisions make up our lives and we are the owners of them. There is no sidestepping.

I face my medical issues--I go to appointments I don't like, take medicine I don't want, research problems I wish I did not have, because I chose to live with this. Even when giving up is or never has been on your radar, it does not change that you have made great efforts and decisions in choosing to fight. Remember that when you are faced with the anxiety of stressful tests, treatments, bills, relationships, illness, etc.--you are a strong person who already has faced many difficult burdens of life. As hard as some challenges can be, it is important to remember the ones you have successfully faced. To boost yourself up as you ready for the next stressful thing.

I will face my issue here: I have been avoiding the site. It's pretty obvious. I made a statement that I was ready to resume after grieving my father's passing, but the truth is I am still grieving. I probably will be for a long time. I cannot let that be a barrier from doing something I love or possibly helping anyone else out there. So let's do this. I'll give myself another chance, and I hope you will too.

Thank you.

Monday, September 22, 2014

The Power of Belief: Part III: Strong Self-Efficacy Reduces Pain Severity

Before I explain how self-efficacy can impact pain intensity, I need to explain what pain is and how our mind affects it. If you do not feel like reading this or feel you already have a good grasp on how pain 'works', feel free to scroll down to 'How the Mind Can Change a Pain Experience'.


What is Pain Sensation and Pain Perception?                          
Pain is a process. While it feels instantaneous, our body actually alerts us to pain using steps in a special alert system. These alerts are uncomfortable, sometimes awful, and they are also incredibly important. They are how are body tells us 'you are being harmed'.


Pain can be helpful. Pain is a warning signal! Pain is a message our body uses to warn our brain about danger and harm. It tells us 'something is wrong'. It gives us immediate consequences for injury, to help prevent our bodies from getting hurt or hurt worse, and helps reduce loss of functionality. There is even research that supports that pain can intensify when we try to suppress it/resist it (Turner et al., 2002). Pain wants us to 'get' its signal.

Consider zombies in popular shows and fiction; zombies are often unconcerned with limbs getting injured or even falling off. Without pain, they can simply ignore these losses, and their mobility suffers for it. Without basic warnings, their bodies quickly fall apart. While pain may seem a nuisance, its signals are extremely valuable for our well-being and survival (when properly functioning).

We get these alerts of harm on multiple 'levels', at multiple 'intensities', and multiple tiers of consciousness. We can experience pain consciously, subconsciously, and unconsciously! (Young et al., 2005). Impressively, pain signals for the same event even function at different levels of consciousness. The multiples of pain is all so the warnings can be used to our benefit (Flor et al., 1990). For example, our body often moves from a painful source (like fire), before we even feel it! Afterwards, the sharp pain of a fresh burn can help remind you to 'protect' the injury. Extended pain from exposure helps to encourage keeping injuries clean and bandaged as well. For manageable and short-term injuries, pain signals can help you heal better and faster! Pain reminds you that an area is not 100% and needs extra care. The problems start when the source of pain cannot be helped or healed, and then pain becomes less helpful and more debilitating.

Pain can be changed. Pain signals are an alert for our body and mind, and the multiple steps involved provide opportunities to 'modify' those alerts. Not only through basic biology; pain signals are also heavily influenced by a person's thoughts, beliefs, mental state, and experiences (Hoffman et al., 2011). But how does that work? If pain is a process, what are the steps? How do the body and mind affect the process? Can we make pain signals more useful, or at least less awful? In this third installment of The Power of Belief, I'll touch on these questions, and discuss how belief changes our experience of pain.
Note: I redid this article to add clarification and a simple explanation of how pain 'works', which I will also be adding to an additional article. I hope it helps improve the entry!


Follow by Email

Little Snippet

My photo
Oregon, United States
Contact me at bedhead@bedriddenhead.com

About The BedRiddenHead

I want to be happy. And this site is about that chance. How to strive to thrive in the body I've got and maybe turn my experiences into something worthwhile.

This site aims to help educate and reach out to people all over that struggle with pain or illness. To try and make something helpful. I work as a medical research writer, my background is in neuropsychology and biology, and I want to share what I learn in a way that is easy to understand. I am not a doctor. I'm definitely not your doctor. I am just some lady who wants to make someone's (anyone's) life a little bit better. Whether you have endometriosis, a chronic injury, a struggling friend, or just want to learn something new, I hope to make a place that has what you are looking for.

Thank you for stopping by, I wish you strength in your health and happiness.