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!


Sunday, September 21, 2014

The Power of Belief: Part II: Self-Efficacy Protects Against Depression and Disability

Pain Self-Efficacy Affects Patient Outcomes

Now that we understand what self-efficacy and pain self-efficacy is, we can start building up an understanding of how it affects patient outcomes for people with chronic pain. If pain self-efficacy is an important aspect in chronic pain outcomes, what are those outcomes, and why are they affected? 

In this section, we look at two common outcomes found in chronic pain patients: depression and disability. Chronic pain increases a person's susceptibility to both of these conditions, for a variety of reasons. A common factor found to impact both of these outcomes (both in severity and likelihood) is pain self-efficacy. 

Depression:
 
Depression is unfortunately common in people with chronic pain, with about 70% of chronic pain patients qualifying for a depression diagnosis (Poole, 2009). As stated in a previous article of mine, research shows that about 75% of depression patients experience chronic/reoccurring pain (Lepine, 2004), and 60% of chronic pain patients report significant depressive symptoms (Bair, 2003). This is a major overlapping issue for pain and, consequently, it gets a lot of attention in research and medicine. There are many factors that likely contribute to the overlap and researchers want to identify those interlinking causes. One identified factor is that of pain self-efficacy.

General self-efficacy already has an impact on any individual’s predisposition to depression (Mukhtar, 2010), but pain self-efficacy is a particularly strong predictor of depression for people with chronic pain. A sense of helplessness in situations (termed 'learned helplessness') is a major part of the thought patterns that lead to depression. Feeling unable to manage pain is a meaningful loss of control. For example, individuals who reported similar levels of pain but differed in their pain self-efficacy, also differed later in their lives in whether they became disabled or depressed. It was not the only factor that led to the difference between groups, but it was a strong mediator between chronic pain and later depression and disability (Arnstein, 1999). Meaning the self-efficacy these people felt in regards to their pain affected their likeliness to develop major depressive disorder.

In another study that examined pain self-efficacy and depression, the same correlation was found between a weak sense of pain self-efficacy and higher proclivity towards depression. This study controlled for pain intensity (meaning the factor was accounted for, its impact quantified, and the effect removed) and still found the same correlation. The study also investigated how the use of pain coping strategies (such as task persistence, coping self-statements, pacing) was associated with pain self-efficacy. Patients who used pain coping strategies were more likely to have a strong sense of pain self-efficacy and a lower incidence of major depression (Turner, 2005). Based on the results of their study, the researchers suggest that not only is pain self-efficacy protective against depression, but that cognitive behavioral and self-management treatments to teach coping strategies could help improve pain self-efficacy.

These observations make sense when we think back to a common cause of depression: a feeling of helplessness. When individuals are able to master this feeling and overcome it, replacing it with a confident belief in their ability to manage their pain, they are less likely to fall victim to this avenue to depression. By developing a strong sense of pain self-efficacy, a person can feel in control over an otherwise distressing challenge.

Disability:

As mentioned above, a chronic pain patient with a lower sense of pain self-efficacy is more likely to become disabled by their pain. This may appear to be obvious, common knowledge; on the surface, it sounds like a higher pain would result in both lower pain self-efficacy and higher likeliness for disability. But when controlling for pain severity, the finding remains. In a 2001 study by Asghari and Nicholas, higher pain self-efficacy beliefs were found to lower avoidance behaviors for challenging tasks and reduce disability associated with pain, regardless of the severity of pain the subjects were in (Ashari, 2001). This suggests that confronting challenging tasks and believing in the capacity to complete them despite the pain is beneficial in trying to minimize disability associated with a painful condition. And remember, pain self-efficacy is not dependent on the ability to succeed. Rather, it is persistence in the face of failure or success and a centered focus on the task at hand.
short term disabilityAnother study that examined the relationship between pain self-efficacy and disability also included the quality ‘fear avoidance’. Fear avoidance is what it sounds like—the avoidance of activities due to fear. A model called the ‘Fear-Avoidance Model’ was developed to help explain how a type of chronic pain developed despite the absence of a disease/permanent injury. It argues that fear avoidance prevents the use of the body and creates a cycle that leads to debilitating pain and disability. However, in this study, it was shown that self-efficacy had a greater impact on disability than fear avoidance (Denison, 2004). Meaning, based on their findings, they argued that a lack of belief for pain self-efficacy has a larger impact on disability severity than the avoidance of activities associated with pain. What’s particularly interesting about this finding, is that the beliefs that might impact performance of activities seemed to have a greater impact than the actual execution or avoidance of activities.

Disability from pain cannot always be avoided and these studies do not ignore the significant role that pain intensity plays. Neither these researchers nor I are arguing that a weak sense of pain self-efficacy is the sole cause of disability from debilitating pain. What I am trying to say is that it can help protect against eventual disability and offers some amount of buffer against disability, regardless of the severity of pain a person is in. It will benefit both your confidence in and ability to manage the challenges that pain presents. After all, the first step of ability is the belief in a capability to execute it. 

Pain Severity:

Pain self-efficacy has also been found to have an interacting relationship with pain intensity/severity. Numerous studies found that while severity of pain could affect the strength of an individual’s sense of pain self-efficacy, the effect was not limited to one direction. Individuals with a strong sense of pain self-efficacy are better able to manage their pain and report less pain severity. The difference has been observed not only in similarly diagnosed individuals, but also in patients that were taught coping mechanisms to improve their pain self-efficacy. Thus, developing pain self-efficacy can lower the severity of pain experienced. 


***The research explaining and supporting the connection between Pain Self-Efficacy and Pain Severity comprise the next post, Power of Belief: Part III (as there is a lot to cover!)***

Saturday, September 20, 2014

The Power of Belief: Part I: What Self 'Belief' is

The Purpose of this Series:

"The Power of Belief", is my effort to inform/improve the belief readers have in their ability to cope with their pain, and to foster understanding for how that belief impacts their lives. When a chronic pain patient improves their belief in their capability, their outcomes as a patient are better than in patients who do not. They tend to be less disabled by their pain and tend to have less severe pain.

To put it simply, mastering your beliefs in your abilities will help you manage your pain. Physically and mentally.

All sorts of psychological states and characteristics have an impact on our physical bodies. Many, many books exist to describe them. Even more research to support the connection. For now, for this series, I'm hoping to teach you about one of these connections: belief in your abilities. What it is, why it's important, how to create a positive change, and to provide some coping mechanisms to help strengthen your belief.

It may appear a bit wordy, a bit lengthy, but it cannot be avoided. The connection between belief and pain involves a lot of information, and this is my attempt to simplify and communicate all that. This series is written for a general audience with research to support claims. However, if you feel frustrated with how it is written, I have good news. The following week, a simpler version of similar information will be posted, written for an audience that does not enjoy scientific reading. Just remember, a shorter/simpler version means that many statements will be unsupported and further explanations withheld. Less information, but easier information to digest. Each article will have its own pros and cons, so choose which ever you feel most comfortable with, or read both and be a super expert in the effects beliefs have on pain!


The Power of Belief: Part I: What Self 'Belief' is

In psychology and personality theory, the concept of self-efficacy is a critical characteristic of an individual’s development, self, and personality. It contributes to not only their perception of self, but also to how an individual interacts with the world and others. Their actions, reactions, and thoughts are all influenced by this important quality.

Self-Efficacy:

Describing self-efficacy can be a little tricky. While the definition may sound simple, trying to understand it and map it onto reality can make it a bit more complicated. Regardless, a definition is a good place to start. Self-efficacy is the belief in one’s ability to coordinate actions in order to complete tasks and meet goals (Bandura, 1977). Essentially, it is the belief that you can handle a situation. A measure of, “Can I do this?”


To help clarify the idea, it helps to look at people who possess strong self-efficacy and how they differ from those who do not. For example, for people with a strong sense of self-efficacy, challenges are problems/tasks to be mastered, whereas those with a weak sense of self-efficacy avoid challenges and regard them with fear. In strong sensed individuals, setbacks and failures in/from challenges are quickly recovered from, versus weak sensed individuals experience loss of confidence and are likely to further in the face of failure. A strong sense of self-efficacy makes a person more likely to fully commit to their tasks and activities, whereas a weak sense will lead to fear and withdrawal. A person with a weak sense of self-efficacy will be too focused on their own personal failings to fully immerse themselves in their activities (Bandura, 1982)

Remember, the examples above are at the severe ends of the spectrum of a strong versus weak sense of self-efficacy. Usually people will fall somewhere in the middle. For above, these are just patterns of behavior you would expect to see in people with particularly strong or particularly weak senses of self-efficacy. The contrasts are to help illustrate the idea, but, in real life, you might not see such clear differences (or maybe even a mix of some behaviors). Hopefully you can begin to understand what self-efficacy is though and how the belief in capabilities impacts a person's thoughts and actions.  

Such a pivotal personality trait is bound to spread into many different aspects of a person’s life. You can take the basic idea of self-efficacy in regards to life in general and looking at it from the angle of how people deal with challenges in general. If you were to put a person in any given random situation, how confident in themselves would they feel? What is their belief in their ability to handle life? You can also approach the concept from the perspective of individual, unique applications. For example, a student’s self-efficacy in academics would have significant meaning for their experience in school. You can also take this concept and apply it to dealing with chronic pain (and many researchers have).

Pain Self-Efficacy:

Pain self-efficacy is a measure of a person’s confidence to do tasks despite the pain they are in (Miles, 2011). This characteristic is obviously is going to be influenced by many different factors. How much pain the person is in, the support they have, the tools they have to manage the pain, their self-efficacy in general, their self-efficacy prior to the development of their chronic pain, etc... But that is why the concept is named as is—it is a measure of a person’s confidence in their ability to perform tasks despite the pain. Nothing more or less. This is important to keep in mind when learning about its impact.

In 1989, researcher M.K. Nicholas developed the Pain Self Efficacy Questionnaire (PSEQ) (Nicholas, 1989). A questionnaire is a tool that has been researched, tested, and validated to be a reasonable measure of a psychological characteristic. While we cannot directly observe thoughts/feelings of people, we can create measures to get an idea of them and somewhat reliably testing for them. For example, IQ tests are considered a well-tested measure of intelligence, but no IQ test can say exactly what someone’s intelligence is—but it gives a useful idea. And this Pain Self Efficacy Questionnaire is just that—a useful idea of what someone’s pain self-efficacy is.

Other, more recent pain self-efficacy measures exist, with varying reliability and accuracy. What is important to know is that in research focused on pain self-efficacy, some useful tool is used to gain a reliable idea of participants pain self-efficacy. Using such tools help to improve the quality of the study and results and give us, the readers, more to trust when making conclusions. 

The Point: 

Why are pain researchers so interested in self-efficacy and pain self-efficacy? Past and current research has supported that self-efficacy, particularly pain self-efficacy, is a useful predictor and contributing factor towards outcomes for people with chronic pain. Self-efficacy affects the outcomes for a patient, and knowing as much is useful in: (a) predicting how the patient will be affected by their self-efficacy and (b) providing a treatment point for improving a patient's pain management. Knowing the relationship between the two helps researchers and patients to better understand how to improve the livelihood for that patient.

Researchers used measures of pain intensity, pain self-efficacy, and other qualities related to chronic illness/pain, and found that pain self-efficacy had an impact on other problems that patients would face. Tomorrow, in Part II, we will go over some of that research and the meaning it has.

***To be continued in Power of Belief: Part II (to be posted 9/21/14)***

Thursday, September 11, 2014

Personal Announcement

Much time has passed since my last update. The exercise project has undergone changes, events have happened, and I have decided that it would be best to make a personal announcement to give any readers and passerbys a little bit of information. I am currently in the process of working on the general exercise plan for individuals with chronic pain. But I know there has not been much communication lately, and I wanted to amend this.

Some of you know me personally, some know me as the individual who runs this site, and some might not really think 'who is this' at all when they pass through. That is okay--all I want is to make a useful site that helps people get through difficulties and strife. I am not really meant to be anything other than a face for the message. Regardless of myself, I really hope that eventually this site becomes a handy source for those suffering and those helping.

But today's post is about me.

My father, a wonderful, kind, and generous man, recently had a terrible accident and passed. His death was unexpected and has been incredibly difficult for his family and loved ones. My Papi guided our family in how to love, how to help others, and how to be the best we could be. The loss has been heavy.

While I am trying to reassess how to move forward in my life from this and how to properly honor his memory, it is difficult for me to properly maintain my work in the chronic pain and endometriosis communities. Messages have gone untended and questions unanswered. I am sorry. I do not plan to abandon what I have started and I have every intention of resuming the exercise project as soon as I possibly can. I love that so many are interested and feel they would benefit from this idea. It makes me so happy.

So please, forgive this inactivity and unresponsiveness. I am very sorry for those who have gone ignored or are worried about the status of the project. I will do my best to answer questions while I am healing, but please (for general items) just keep a weather eye for updates. When I am ready to resume work on it, I will make a post and will keep people updated. I will need all the help that has been offered.

Thank you so much for your interest in both me and the work I am trying to do. For those who do not know, before I became so ill, I wanted to go to medical school and become a diagnostic specialist. My father enthusiastically encouraged this. I love science, medicine, and people. I wanted to help them heal. While my doctorate is physically impossible currently, I still get to use my knowledge and talents to help people deal with pain, and it feels incredibly rewarding. Thank you for caring about what I have to say and giving my ideas a try.

--Ash the Bedhead

Sunday, July 20, 2014

Exercise Plan Update

When I sat down and actually began to draw up my ideas for a workout plan, I realized that I could not feel comfortable with it without more research and qualification. I have ideas and tips that I know work for me, but I want to create something that works well in general for all sorts of different people in chronic pain. Because if it's not useful, then what was the point anyway?

In my search for education and knowledge, I have found a couple online programs for exercise science and personal training. I am not going to go so far as to get certified (as that is a luxury at this point). However, I am taking the time to read the books and do the assignments and learn how to design a fitness program. I am truly excited to see what I will be able to produce once I complete this. 

In the meantime, I will add a couple different posts to this site, and will continue to work on developing a three-tiered, free fitness plan for people in chronic pain. 

Thank you everyone for your feedback and support!--Bedhead 

Wednesday, July 9, 2014

Developing an Exercise Plan for Chronic Pain

Today I tried to search for an exercise plan for people with chronic pain, something for me to follow and improve my fitness, and I could not find anything. I found the occasional webpage with suggested exercise for individuals with chronic pain, but not any real plans for improvement.

Before I got sick, I would follow triathlon training regimens and track my weight lifting/running distances and improve day by day. But following a training plan like that today would likely catapult myself straight into a flare. And I doubt many of my readers would benefit from a plan like that, despite the numerous options available to them online.

So, starting this week, I am going to start developing a 10-week fitness plan designed for individuals with chronic pain. I'll only be using my experience in fitness appreciation and biology/anatomy/physiology, so take it with a grain of salt. But I hope that I can put together a plan that gives realistic, healthy progression for people in pain. The idea will be to meet the weekly recommendations for fitness without compromising the limitations that pain puts on exercise. It will be designed with the goal of self improvement and minimization of pain in mind. And, there will be multiple levels of difficulty built in so people on different ends of the spectrum can benefit.

I'm posting this now because I would love to hear feedback, input, ideas, suggestions, etc., for this project. As I release each week's plan, I would also appreciate it if people could spread the word, share the plan, and, most importantly, give it a try!

Wednesday, June 25, 2014

The Experiment

A few months ago I began to question, rather intensely, the truth behind my Crohn's and my intolerance to gluten/wheat. I went from moderate inflammatory bowel disease (ulcerations and internal bleeding in the gastrointestinal tract) to almost no inflammation after quitting gluten for a year. Some doctors even began to question my original diagnosis, as different specialists will disagree on the accuracy of 'triggers' in relation to IBD. With the inflammation gone, they began throwing around skeptical questions of 'coincidence' and 'hysterics' and other lovely invalidations. Conveniently ignoring the colonoscopies and biopsies that led to the diagnosis in the first place. But I also began to question it. I question myself rather often so I suppose it should not be a surprise that I became suspicious.

The primary concern I had was that my wheat flour response is 'dose dependent'. Meaning that my pain, inflammation, and symptoms are related to the amount of gluten/wheat I consumed. I can sometimes even eat regular teriyaki sauce and be okay (a very small ingredient in soy sauce types is wheat). Someone with celiacs would not be able to handle such exposure. Crohn's is different than celiacs, but it's definitely not well understood. Maybe I was being dramatic? Maybe I was wrong to believe I had a specific trigger?

So, the other day, we decided to do a small 'experiment'. A way to establish if I had been unnecessarily limiting my entire diet for the past three years. I took a bite of a pierogi. My boyfriend is Polish and the scent of his grandmother's pierogies was driving me batty. So, on a spur, I asked if I could take a bite. I rationalized to him and myself that it would be a good test, to eat a dumpling wrapped in wheat flour dough. Much more flour than I had had in years.

I took a small bite.

A small bite.

Oh, heavens be kind, by Great Odin's Beard, it was just a small bite!

In between quiet sobs and symptoms that I do not wish to attach to my name, I am going to say that the experiment was a success of sorts. I need to learn to trust my 'gut'.

I can't eat wheat.


Monday, June 16, 2014

Adding in a few Shakes of Excitement and Power

When we were children, we can probably all remember the distinct difference between doing something out of desire and doing something because we 'had to'. Being told to clean your room was infinitely different from the spontaneous tidyings you self initiated from age four onwards. I remember I once mopped my mother's floors with a friend, at about the age of seven, and it was a fun, fond memory. Much different from the bullying, threats, pleas, and demands I received to clean my parents' home on various occasions since.

To make it simple, most persons vastly prefer to do something of their own volition and with their own spin than to feel coerced into something they resent. It's human nature. We like to have self control.

So when I look at the many things I have to do to maintain my body, semblance of health, lows of pain, I try my best to make it something I control, rather than dwell on the aspects of something forced upon me. And the greatest way I have found, to add in power (and a bit of excitement), is to make it more enjoyable. I like to make it fun.

Exercise

I have to exercise to maintain mobility, and exercise causes me pain. What a great paradox. I used to love running for miles and miles and spending hours pushing myself to the edge. But it got changed to a chore when I became ill! It no longer was something I got to enjoy doing, it became something I had to do to minimize suffering. But all of these feelings are primarily adjustments to my experience of exercise, not changes to the activity itself. So I needed to change how I saw it and felt about it.

With exercise, there are two primary things I do to increase the fun and my sense of control. First, I let myself choose. Always. For my daily exercise, the movement I need to do to keep my adhesions from forming a sturdy latticework, I get to choose. Whether it be yoga, running, biking, skateboarding, dancing--whatever I choose, I get the satisfaction of selecting it. Of taking one from all the others and saying, "I'll do this today." It turns from having to do exercise to getting to choose my exercise. Second, I add in a bit of fun and personal flavor to give myself something to look forward to. Such as with cycling, I sometimes watch a newly rented movie on my trainer, or with dancing, I can dance to dance games on the PlayStation. Or crank up ridiculous music and 'clean dance' my apartment. It becomes an absurd, fun, chosen game.

Cooking

For meals, I used to feel a lot of resentment for losing gluten. For three years now, I have given up wheat. Otherwise I face bouts of Crohn's and endometriosis pain that make bread look like a bundle of cyanide. My greatest sorrow for the loss was related to my passion for baking. Prior to entering the worst throngs of endometriosis, I would bake almost weekly, putting together large frosted cakes and playing with colors, designs, and flavors. My favorite was banana chocolate. There were 'cookie weeks' where every day, I'd bake a different type of cookie. ...I went through a lot of butter and sugar (and had many willing acceptors of donations so I could protect my own waistline!). When I lost wheat, I packed up my frosting tools and cake pans and resolved I would never enjoy baking again. I felt I had lost all choice and control with the hobby.

However, after a long eventually, I learned to flip this assumption on its head and make it a game. I have a challenge--to make more delicious cakes with less conventional ingredients. When I still manage to make sumptuous deserts, with flavors and textures the same or better than my prior ventures, I win. I love serving food to unsuspecting friends and then gleefully informing them it was a gluten free meal. When they assume it has wheat in it, I win. When they don't believe me when I say it's gluten free, I get bonus points. Most of the time they will not believe me. Super bonus points! Diving back into baking and cooking and frying and learning how to both overcome the missing ingredients while improving the meals, that has become another game and great challenge. I'm probably going to write my own recipe book by the time I am done!

Life

I am not trying to say that the difficulties and changes that my pain and illness has tossed into my life are welcomed editions. It's not like having a box of boggle thrown in your face and jumping up and down for joy for the game. I am just a normal person who sometimes resists improvement like a plague. But sometimes I can rise brilliantly to an occasion when the situation calls for it. Sometime we all can. And I do believe that by taking a rotten situation and turning it on its head, you can make a struggle into something exciting. Maybe even a bit fun.

The adjustments I have had to make for my illness have been rough. They have also taught me to be innovative, creative, and hard working. By refusing to be backed into a corner, and instead choosing for myself my way of coping, I have empowered myself and grown in previously impossible ways. I get to choose to make it exciting and empowering--I hope that is a choice and change that my readers make for themselves.

Thanks for Reading--The BedHead

Saturday, June 7, 2014

Strategize and Strike

Following a special diet for chronic health is an annoying predicament. While it is completely within the realm of personal choice to follow said special diet, the choices are poor. Currently, my doctors have settled on wheat (or gluten) is the primary cause of problems with my Crohn's flares. Gluten has also been shown to intensify the pain caused by endometrium plaques. In this particular example, I have two choices. Eat gluten, get ulcerations and possibly end up in the hospital. Or do not eat gluten, and deal with having to sift through every food item I ever ingest ever. Still a choice--I have the power to choose either one, but it does not feel like good selection.

One thing I hate about gluten free diets is the cost. Honestly, I have spoken to people who 'voluntarily' chose gluten free (no illness or allergy) and it boggled my mind why they would want to suffer by choice. Why would someone choose more grief and cost for their diet? But, for better or worse, the popularity of gluten free diets have made selection a bit better. Compared to the past, there are many great choices now available for gluten free diets. Pastas, breads, baked goods, snacks, candy, cereals... things that all seemed to be shut off by availability or terrible quality are now opening up more and more. I've had excellent pasta and excellent bread. I've had terrible ones of each as well. 

And through my samplings and experiences, I have learned two key things about eating gluten free: it can be expensive and it can be time consuming. Seven dollar breads, ten dollar bags of ravioli, two dollars for a snack bar. Whether from factory costs, stricter restrictions, or unnaturally low competition, gluten free is spendy. So you have the option of spending a good lot of money on all your food, or you have the option of spending a small lot of money on ingredients and making it yourself. But how how do you make the best of either of these stratagems? 

Strategy
  1. Determine your sensitivity. Are you reactive enough to need non-contaminated gluten free products (gluten free facility, sealed packaging, meets criteria of less than 20 ppm (parts per million))? Or can your gut handle bulk flours from natural markets (such as Whole Foods)? Though cheaper to get non-certified goods, you need to be considerate of the need you are serving. E.g., if you have celiacs, it defeats the point of a gluten free diet not to buy completely uncontaminated products. Choose wisely; if you are unsure, use a food and pain diary to track reactions for a month each. 
  2. Gluten free product prices have a surprisingly large gap of cost amongst different stores, even among the same brands/items. For example, my favorite sandwich bread mix is Glutino. I can get it for $4.50/box at the local super market, $5.50 at the local Whole Foods, and for $5.99 from the Glutino website. Learn which products you like and see where you can get them and for how much. 
  3. Be willing to try varying brands. Some brands are way more expensive than others, with little variation in taste/quality. Gluten free products are still finding their way into the market and there is usually a fair chance of finding the same product with the same ingredients, for cheaper. Become familiar with different brands and deduce which value (i.e., cost and worth together) is best for you. 
  4. Explore new and different venues. I recently began ordering more of my food online. I love to support local stores and shops, but the price discrepancies with many gluten free items make me feel like I am getting screwed over. For example, a box of Annies Rice Mac n' Cheese cost around $3.50/box in the local shops. I got a case of 12 boxes for $20.00 total after a coupon and special shipping deal--That's $1.60/box. Find multiple venues to make all your comparisons with for strategy #2. 
Strike:
  1. Organize a pantry that facilitates cycling through bulk and discounted goods. Buying things in larger quantities to take advantage of sales of bulk discounts can result in a problem, if you are not careful. After all, there is no point on saving on food if you cannot use it in a timely manner before expiration! Organize your pantry to have the nearest to expiration foods in the front and, if it helps, circle or write the dates in larger print. 
  2. Learn to bake. So much can be said for baking your own goods, but the three main primary benefits I will mention are: (1) better taste--pretty much anything you make in your oven will taste better than the over-preserved, stale, low flavor of store bought, (2) better nutrition--you get to control what goes into what you eat and you can add nutritious additives such as ground flax seed to improve it, and (3), better price--it will almost always be cheaper to make something than to buy it, and, when it is more expensive to make, it will likely be due to better quality ingredients.  
  3. Plan ahead. Being unprepared is more likely to cause problems and grief than most other complications. It can cause situations where you are forced to spend more money than you would like (or have), make you go hungry, or even risk higher exposure to the thing you are trying to avoid. Having a plan for most situations can prevent being backed into a corner. Call restaurants if you are unsure about their menus, pack snacks, and keep back ups in your car/office/bag. Preparedness is your friend. 

Remember, this list may be specifically aimed towards gluten free, but there are no rules against using it for other allergies/intolerances. 

Thank you for your time and reading, and I hope you have a pain free day!
--The Bed Head. 


Thursday, May 22, 2014

Getting Dressed can really Help!

When I am having a bad pain or emotional day, sometimes I merely want to sink into my mattress and disappear under the feather down of my comforter. It can take a lot of willpower, a tenacious dog, and sometimes a phone call or two to get me to relinquish those minutes/hours/days of rest, relaxation, and pain minimization.

However, I can grudgingly admit that no matter how long I stay in bed, when I finally emerge from the dark cave of my bedroom, I am still in the same state I was when I entered. Fatigued, in pain, emotionally exhausted. As nice as the retreat from reality is, it is not very helpful when it comes to solving the problem I am escaping.

Now, to be clear, I am not talking about much needed rest that comes from intense events (surgery, burst cyst, Crohn's flair, work stress, etc.). Sometimes everyone needs a bit of time and a break to reset their 'world'. I am talking about the excessive bed rest and hiding that I do from time to time when I feel overwhelmed. The procrastination of life that I facilitate by hiding beneath my covers.

Did you know that our brain is heavily influenced by small cues and events? Things as small as brushing your teeth and washing your face at night can help cue your body that it is time for sleep. In turn, brushing your teeth, showering, getting dressed in the morning, can help cue your body that it is time to face the day. And it will help rally resources to cope with the stressors of life when you do so.

Little things like doing my hair, putting on real clothes (not pajamas), even a sweat suit, can help prep my mind to better face the problems that I face. For example, even when I was on bed rest for six weeks straight, I tried to do my make up every so often. It helped me stay more positive, more 'in the world', and it increased my ability to handle stress.

Our body and minds are in tune with the routines of our life. Why do you think daylight savings screws everyone up so much!? We are creatures of habits, and our habits set a stage for us.

If you have not experienced this for yourself, I do not blame you for being skeptical. But I will challenge you. Please, for one week, try putting effort into your morning routines. Whether it be combing your hair, tidying your home, or a brief routine of exercise, try doing tasks that help you in the real world. I think you will be surprised how your body and mind react.

Saturday, May 10, 2014

Ranking the Pain

Sometimes, when I am in a particularly bad spot of physical, emotional, and/or mental pain, someone inevitably feels the need to tell me, "Think about all the people that have it worse than you," with the best intentions of thinking it will make me feel more grateful for my situation. It does not.

Comparison is never a good method for dealing with sorrow. Ever.

It has always struck me as odd that people will simultaneously tell you not to envy those who have it better than you and also to feel better off than those who have it worse. Especially because comparing your situation to others will never change the actual event you are experiencing. It might alter your perspective of it, ever so slightly, but the outcome of that alteration is mixed and ignores the heart of the issue. That you're in pain.

A good story that illustrates the fallacy of this method is the analogy of a soldier. As a group of soldiers are being transported, a man and his comrades are caught in an explosion. People have rushed to their aid. The man has lost both his legs. To comfort him, someone says, "Just be grateful it's only your legs--the man in the front of the jeep is dying." Does this give the man back his legs? Make the situation better? Help the man who is dying? All it really does is invalidate the pain this man is experiencing from having his legs blown off! In regards to his pain, it really does not matter what any one else is experiencing.

This is not something than only 'others' do. We do it ourselves. We feel guilty for feeling bad about something when we 'know someone else has it worse'. I had a good friend who would tell me about the stresses and bad events in her life, and would always finish off with, "I know it's not as bad as what you go through...". I would always need to remind her that nothing I am going through invalidates her experiences. She had every right to feel frustrated with her situation. But she had been taught to look at things as comparisons rather than individual events, and it created anxiety and invalidation even within herself. And for our friendship, it made it difficult for me to be a support because she would feel guilty telling me her struggles. Eventually, it got better, but it pained me that somehow she had learned that pain was a ranking game, not something to just be addressed and helped.

When people try to rank suffering and pain, they're taking the focus off the individual(s) who is(are) suffering and focusing it on the comparison. Rather than helping either person(s), it's invalidating their experiences and ignoring how they feel about it. Attempting to even rank pain is flawed in the first place, as we never truly know what someone else is experiencing and cannot truly say whose experience is worse. We'll never know enough about others to rank anyone's suffering but our own (and only compared to our own experiences--those are the only ones we can fully know). It would be pretty brazen of me to think I have it better (or worse) than someone when I really do not know how they have it at all, do I?

For all these reasons and more, it rubs me the wrong way when people offer 'comfort' in the form of these comparisons. Intentional or not, it dismisses the event I am going through and makes me uncomfortable. It is said as an offer of solace, but it does nothing to change my pain and feels ridiculously invalidating. It takes trust and security for people to share pain with others--it should not be dismissed as inconsequential for any reason. And it teaches those who are suffering that the rank is more important than the pain.

I am fairly certain that the people who take the time to read my blog are not the sort to dismiss the pain of others, intentionally or not. I am more likely to be concerned with my readers consciously or unconsciously doing this to themselves. No, this post is not a manual for 'How not to Invalidate and Drive Away your Friends, Part II". My true intention is to share my understanding for the frustration of being ranked and dismissed and to let you know that you are neither alone or wrong to feel belittled by statements like these.

When someone (or my own head) does say things like this to me, my responses generally include aspects of the following list:


  1. Comparing myself to others to feel grateful is usually a bad strategy because I am surrounded by more healthy than unhealthy people in my everyday life. If I depend on others to validate my feelings, I'll eventually become very jealous of the people I interact with and become unhappy and isolated. It's better for me not to compare my situation to others. 
  2. While I feel for those who are suffering, it does not help any of us to try and decide who has it worse. Especially because I do not fully know their experiences, just as no one else fully knows mine. I would rather focus on helping myself and others, rather than defining experiences that I do not truly understand. 
  3. My situation and how I feel about it does not really have anything to do with others--please do not dismiss how I am feeling right now.
  4. Smile, nod, and excuse myself from the situation. Some people will never understand why they have put you off or are not going to respond well to contradiction. It's better to just feel secure in knowing why they are wrong to offer such advice and know that it's okay for them to feel differently than you do about it. Do not waste energy feeling angry at people who do not understand!

Last, this post is not some veiled guide to feeling secure in selfishness. I am not advocating that those who are suffering do not ever need to think of anyone but themselves. This is a statement of validation. That you are allowed to feel frustrated and hurt by what you are going through, without worrying about other's experiences. Personally, I think that by truly experiencing pain, we become more empathetic and more capable of helping and understanding others who are suffering. Continue to help others and to not focus too much on the bad things in your life. But that does not mean you do not have the right to acknowledge the pain in your experiences. 

Friday, April 18, 2014

Support for Others, Support Yourself

A couple years ago, when I sat down and decided to start this site, I made a single item my goal--I wanted to help just one person. I thought that if I could just help one person feel a little better, any of the work I put into making this site a reality would be worth it.

Just one!
Perhaps there is some contrary logic to this--after all, websites are intended to reach many people from all over the world. Yet that is why it had to be a site. I did not know anyone with my conditions, my struggles, and I felt really alone in everything I was going through. And because I felt so isolated, I knew that there had to be other people in similar situations who felt just as alone. Somewhere. Separated by our isolated, buffering bubbles. And for reasons I could not identify at the time, I wanted to help that one person. So I set up my site, put out my thoughts on the 'interwebs', and hoped it could help make my one person feel a little better.

As feedback rolled in and more people responded to what I put out, I realized a couple of things. For one, I have reached more than one person. Each person that writes in and tells me what my writing has meant to them... some of these heartfelt messages have brought me to tears. From joy, from empathy, from fulfillment. And I realized that with each impact I made, I was not helping just one person--ever. No matter who else I helped, I was also always helping myself. Helping myself with every effort I put in.

I do not mean this in a selfish way; this site is not a intricate method of patting myself on the back. Or a way to lift myself into the fame of the internet (though I doubt very much fame comes from chronic illness anyhow!). But in trying to motivate so many people to change their lives for the better, or help them try to find and extract the strengths within them, or helping to further their ability to manage the trials they struggle with, I found I was helping myself. How could I try to push others to be better in and feel better about their lives without making those changes myself? To put it in cliche' terms, I cannot sell something I would not buy. And believing in others made me believe in myself.

As I found this strength and joy in support online, it started to spread like a skirting fire into my personal life. It lit up my conversations, my relationships, my work and my life. It flickered into a passion to identify the pain in others and try to ease it. When I see someone struggling, this burning desire to help lighten that load takes over and I try to think what I can offer to lessen that burden.

However, not feeling well can lead to some... less than motivated motivational attitude
I think there is a valid fear that, because energy is restricted by illness, pain, and other struggles, that reaching out and entrenching oneself in another person's problems becomes too draining and hard. The fear is understandable--I have burned myself out before from trying to do too much and breaching the limits of my capacity. But I think that as you find ways to comfortably offer help and support, develop methods that fall within your range of capacity, you discover that you are helping and consequently helping yourself. Sometimes it can be as simple to just listening to someone's problems so they can feel your empathy and emotional support (which I discussed recently in another post). Even going onto online support groups and responding to a post with, "I know how you feel" can make a difference. No matter how big or small that help offered is, I get a little lift from every person I help.

Why? Maybe because it strengthens my ability to deal with what life throws at me. Or maybe it makes me feel like my web of support is widened when I help others. Or the connections I make help me feel secure. Maybe focusing on others lessens the pain I sense in myself. I do not really put much conscious thought into the why; ultimately, it is the result that makes a difference in my life and that is what I appreciate. I really don't care about much else.
Cheer others on with grace and fearless beauty.

I cannot make you go out and try to help the world. I actually would not really recommend that as a first step! But I can ask you to try and lend a hand to others who struggle. In kind words, in helpful actions, or in whatever form of support that suits you best. Maybe that sounds cheesy but it does not lessen the truth in what I am saying. I wish for everyone/anyone to see and experience how it can better your own capacity for strife and help you feel the connections you need to survive the battles life and our bodies throw at us. As long as you do not push yourself too hard or expect too much, supporting others really can improve how you feel.

When you cheer others on, especially those you empathize with, you are cheering on yourself. You cannot wish well for them without wishing well for your own life. So thank you everyone who has allowed me to wish them well, I have enjoyed every minute of it and cannot wait to see what the future brings. I have been able to reach much more than one person, and I cannot express effect it has had on me.

--The BedHead


p.s., I recently started a twitter account in connection with this site, trying to spread inspiration, cheer, and sarcasm as best I can. If you have a twitter account, please follow @Bedriddenhead and help me get the thing off the ground--because I have no idea what I am doing!
https://twitter.com/BedriddenHead

Wednesday, April 2, 2014

Medicine Options

Prescriptions are more than an order for a medication. It conveys the amount, dosage, brand, etc., of any pharmaceutical medication someone legally uses. But far too often I've seen instances where people become bound up in their prescriptions as fixed orders, rather than seeing for what they are--a tailored order for your disease/condition/need.

Prescriptions are given by doctors because they are supposed to reflect a needs based assessment of a person. They're different than picking up ibuprofen at the market--they are a specially written order for your body. So if your doctor is just writing up these orders without any questions or assessment, I recommend you find a new doctor.

As prescriptions are intended to be tailored to YOUR needs, it is important to know some key information about prescriptions and how they can work for your benefit.

  1. Prescriptions tell insurance/medical coverage what medications are necessary for condition management/prevention
    • Prescriptions are specific orders that are going to keep down long term medical costs for you as an individual--thus, programs are motivated to cover them. If something does not have a prescription, it is written off as 'unimportant' and thus unnecessary to cover. Always check into prescriptions if you have coverage--even prescribed ibuprofen can save you money. 
  2. Prescriptions are personalized
    • Many people seem to think that the limits their insurance puts on quantity of their medication is fixed. Generally, this is not the case. These limits (like including placebos in birth control for coverage) are intended to fulfill general needs. If your needs differ from what you are initially told, ask your doctor to personalize your prescription. If insurance resists, ask your doctor communicate with insurance regarding your needs. For example, I skip placebos in hormones and take the medication non-stop, because it is too dangerous for my body to go through a menstrual cycle. My doctor just had to write this into my prescription. For a patch I use, the doctor had to justify my needs.
  3. The first answer is never the last
    • Medical coverage will try to cut costs--it is their job and what they do best. If they are trying to prevent you from getting a medication you need however, keep pushing. Ask you doctor to push and push as well. Often, insurances will request you 'try' alternatives before paying for the more effective medication. You can speed this process up with communication with your provider. 
    • Providers are used to fighting with insurance for the best medication for their patients. If you ask for help, they will give it and will be experienced with the process. If they refuse you, find another doctor. A doctor should always put patient health first. 
  4. Discount cards
    • Many brand name medications provide discount cards to ease the financial burden their cost may cause (this is called skimming the market, making it cheaper for those willing to jump through hoops). The cards take a bit to set up but are generally easy to use. Most pharmacies can help you with the process if you feel overwhelmed. 
  5. A prescription is for YOU
    • If a medication is not working or not working well enough or is not in high enough quantity, ask your doctor for alternative options. If prescribed medications were one size fits all, they would not require prescriptions. Do not be afraid to voice problems, concerns, and needs. You can work with your doctor and insurance to get what you need. NEVER settle for a medication that does not fit your needs. There is almost always another alternative worth trying. 
Thank you for reading and for those of you that asked these questions this past week. I particularly want to voice these options to women with endometriosis--you can get birth control/hormones custom fitted to your needs, paid for by insurance, as long as you are willing to PUSH! Best of luck to everyone and I hope you have read something of use!

Sunday, March 23, 2014

Painful Social Anxiety

Something really important to me is keeping commitments. Whether it be plans, promises, or devotion, I see someone's word as having intrinsic value and I want it honored.

Keeping my word was something I always expected from myself--if I committed to something, it meant I was going to do it. I often struggled with organization (I have pretty severe ADHD), but I was constantly working on it so I could do the things I said I would. I ended up being a big planner by age 16 and would usually organize things for my friends. Flaking became my biggest pet peeve because I had learned how to overcome it and figured others could too.
Goofy dogs really become your best friends
when you're trapped inside 24/7

But as my pain escalated, things changed. I slowly started being the person to drop out. I started missing meetings and letting down friends. As things got worse, I stopped planning activities and hosting events. I could not afford to have pain incapacitate me and ruin things for everyone. I was scared to carpool to places because I was nervous over being stranded or forcing someone to take me home. I canceled dates, abandoned group outings, turned into a cyclical hermit. People eventually stopped calling, even when I was feeling okay. And eventually I stopped making plans, because I never knew when pain or sickness would strike. The texts ceased, facebook messages drizzled down, and a lot of my previous friendships turned into waves-when-they-see-you-in-public.

When I got better at managing my symptoms and pain, things did not change overnight. Even though I was technically 'healthier' (i.e., medicated and more familiar with my limits), I had a ton of anxiety over being social. Because, to me, my word had become useless. I saw myself as someone completely unaccountable for her commitments and a let down to her friends. I did not want to inflict my flakiness on anyone so I could not bring myself to even risk the situation. For example, I used to even hate being invited to parties, because I felt like my possible absence would only reinforce my lack of dependability. It seems pretty egocentric now that I look back and think about it.

Regardless, my friends, no matter how much I loved and cared for them, became sources of stress. Because even if I made it to an outing, I would spend most of my time worried about me having to leave or feeling overwhelmed by my body. I worried about my symptoms making me act weird or people resenting me for being high maintenance. I worried about friends dropping me from the bother and resisted bonding with anyone.

Living life with social anxiety is not a good way to be though. Unless you're an extreme introvert (which I am not), friendships and socializing is a basic necessity. And icing every social interaction over with a layer of anxiety creates a lot of unhappy, stressful moments. I felt miserable.

So I set about overcome it. I made a list of all the different activities that have come to cause me anxiety over the years of my illness and ranked them in order of stress. And then I set about doing them. One by one. Moving on as I felt comfortable with each accomplishment. Re-learning how to enjoy socializing in the moment, and understanding that I can be sick and be social (not one or the other). I've learned that it's okay not to commit to something I don't feel comfortable with, but it's also okay to try and tailor things to better suit my situation. And to also realize that the value of my word does not completely hinge on ability to perfectly keep appointments. There are other ways for me to come through for my friends than just meeting up at a restaurant.

For those of you with social anxiety linked to your illness, here are some things I do:
  1. As I mentioned, I made a list of all the situations that were causing me anxiety, ranked them according to stress, and worked on them one by one. Repeat some until you feel ready to move on. Don't push yourself too hard. 
  2. Learned to be less secret about my illness. 
    • If things come up, I am appropriately honest. For example, I fainted while slack-lining with some friends a while back. One was unaware of my conditions and got really freaked out. I told him not to worry, that I have blood sugar issues and it only meant I needed a snack. When I couldn't move for several minutes at work once, a coworker became alarmed, so I explained to her I have controlled nerve problems, but they were acting up. By being honest with others, it eliminates the worry I used to have about them judging me for behaving the way I do and making assumptions. It also shows that I trust them and gives others a chance to be supportive or kind about it. 
  3. Plan things in advance.
    • When I make plans in advanced, it gives me a chance to structure my week in a way that will allow me to have the energy and resources to keep my plans. Recently I was asked to do something without plans that I felt uncomfortable with, and against my judgement I agreed to it. I ended up having to flake, extremely stressed, and sick all weekend. 
  4. Don't agree to something you don't feel comfortable with. 
    • This relates to 3--if you don't feel like you can meet the requirements you need to do the activity, change it. If it can't be changed, don't agree to it. There are of course reasonable requirements to do some things you aren't always comfortable with, and you want to grow, but don't force yourself into a bad situation. 
  5. Ask your friends for support.
    • Let your close friends/family know why you're struggling. Ask for support and understanding. Make it clear you miss them and want to be in a place mentally, and physically, where you can enjoy time with them. Explain how your illness causes this social anxiety. You will likely be surprised by the reception of your request. 
There are plenty of other resources online where you can find support for social anxiety. This post is more about how it relates to illness, so please understand it is not an exhaustive list of every option. Learn what triggers your anxiety and work on it. Since I done this, I've been much more social, made more friends, strengthened past relationships, and became happier with myself as a person.


Edit: I've gotten some people asking me how to be there for a friend when pain/illness keeps you from 'being there'. So here are some things that I do to let my friends know I care about them and support them in my own way:

  • I like sewing when I'm stuck at home and make simple gifts for friends (heating pads and hand warmers are fun!). 
  • I cook for them when I feel well enough because it's extra thoughtful and lets them know I was thinking of them, even though we could not go out to eat together the week before. 
  • I write thoughtful notes when I miss important events--like a friend's birthday or wedding--about how excited I am for their good news and wish them lots of luck. 
  • If I know a friend is having a rough time, I message or call them and let them know I am willing and listening ear. I use my negative experiences as a place to draw empathy from, and it helps my friends know that I am sincere when I comfort for them. 
  • I invite friends over for movies if I do not feel like I can make it to the theaters. 
  • A big factor in keeping my friendships strong is sharing with them--it shows them I trust them as friends and lets them know that it is nothing personal when I can't make it and that I don't want them to give up trying. People are not mind readers--sometimes newer friends will feel like they're being avoided or that you're making up excuses. You certainly do not have to share more than is comfortable to you, but it can lessen the load for you and include your friends in something meaningful. 
  • Most of all, I remember not to beat myself up for having to do things differently. 
Thank you for reading, and please email or comment any other questions!

Sunday, February 16, 2014

Feminism and Endometriosis

Some people think that feminism and endometriosis have absolutely nothing to do with one another. Others think that the two subjects are impossible to separate, having a cyclical nature of profound effects and response. More likely, you might not have contemplated the relationship between the two. Personally, I just want to put out some of my thoughts on the matter because it is driving me crazy how endometriosis is negatively affected by gender inequality and I want to clarify why.

First though, what do I define as feminism? Do I define it as a misandristic paradise with men as the prime target for subjugation? A movement that died out in the 70's? Or something relegated to women's studies in college? I prefer to see feminism as synonymous with the equalist movement. An effort towards gender equality in all things possible. Most socialism definitions recognize that third-wave (read, non-radical) feminism has moved past being an only-female focused movement, moving towards equality in general. I recognize valuable differences and contributions each gender makes towards to society and simply want to fix inequalities in areas where they have no business being, in which they artificially reduce our potential as a society (such as in the work place, the home, and many other opportunities).

The nice thing about the change in third-wave feminism is that it aims to benefit both women and men. By reducing the burdens of unhealthy archetype for masculinity, it helps men of all kinds explore their potential in a safer environment than fifty years ago. And being a feminist does not mean I disparage any sort of preferred lifestyle or choices. If a woman wants to be a stay at home mom, more power to her, and if a guy is chivalrous, I take it as a complement. Honestly, I'm a better cook than my boyfriend, so I tend to cook dinners for him, and once in a while he takes me out on a nice date where he holds doors open for me and pays for the meal (sometimes he'll let me pay for him though!). We both work, we live separately, and we each bring our own talents to the relationship. We have a mutual respect for one another. That's what I think feminism is--respecting and refusing to limit a gender based on false short comings.

Forgive the explanatory tangent, but it was necessary for understanding my viewpoint on this next part. How does this tie into endometriosis? If you have read my other posts, I am not an individual that purposely seeks out controversial subjects to stir up interest. I do not inject political agenda into my posts. So why now? The truth is, I am tired of seeing the relationship between sexism and endometriosis glossed over, and I want to verbalize my own perspectives so maybe others can acknowledge their own on the matter.

Current research indicates that the prevalence of Endometriosis ranks at around 10% of women, in forms ranging from mild to severe. That's 5% of the population. For some perspective, 2.8% of the global population has diabetes, 8.4% prevalence of asthma in the USA, and less than 1% for autism spectrum disorder. In the USA, if you consider both diabetes types together, up until age 50 the prevalence is still about 3.7%. Multiple Sclerosis is at 0.085%. 3% (by age 80) will receive a diagnosis of epilepsy by age 80.

The point of these statistics is not me trying to downplay any of these other diseases. I have asthma, and it's landed me in the ER several times. I feel major sympathy for those whose lives are stalled by a diagnosis of MS. The point of stating these statistics is that these diseases/disorders are regularly tested for when the symptoms present. These are diseases that everyone has heard of. Yet 5% of the population has Endometriosis, and no one but those effected by it have even heard of it. And it takes an median of 9 years for a woman presenting symptoms to be tested for Endometriosis by her doctor.

For example, even when my sibling had already been diagnosed with Endometriosis and I had been showing symptoms from my first menstrual cycle, none of my doctors would even consider checking for it until I was 21. And even then it was accidental, during a surgery for cyst removal and appendicitis. Yes, I had a cyst the size of an orange and they still were dismissing my suspicions. I was spoken to as a hypochondriac and belittled by any doctor I suggested the possibility to.

Ok, but just because Endometriosis is not as well known as it should be, does not mean it is tied into gender inequality, right? I mean, look at Breast Cancer--the disease's current status a great example of a successful campaign to raise awareness about a serious, primarily female disease. So I cannot just use lack of awareness as support for my argument. And I won't.

Gender inequality in medicine is a huge problem, and it affects both sexes. In regards to men, they are often denied needed treatment for mental disorders (such as depression) because of societal, toxic pressures to 'be a man' and not let emotions get in the way of things. When facing mood disorders, men feel disproportionate pressure and shame to shake off their struggles and move on. This often leads to alcohol abuse, as a way of coping and self medicating, and can consequently lead to alcoholism and the physical complications of long term alcohol poisoning.

The female effects of gender inequality in medicine are even more damaging. Women, in particular, are not taken seriously or respected when they communicate the experience of severe pain. In fact, they are often ignored. Women are less likely to be given pain killers for the same pain indications as men, primarily because they are simply regarded as likely to exaggerate, having a low pain tolerance, or just seen as 'whiney'. So when you have a female disease that is largely indicated by severe pain, it is likely to be ignored, unconsidered, and brushed aside.

In our medical world, no woman, no person, should have to go through 9 years of severe symptom presentation before they are diagnosed. Breast cancer incidence is less than 0.1%, yet women are constantly screened and educated. I am not dismissing the consequence of untreated breast cancer being death, and I recognize the health industry has a clear motivation for encouraging this education. Just last year, my mother had a double mastectomy from breast cancer, I am not trying to belittle it or say, 'no big deal'. But when you look at the emotional, physical, financial, and overall quality of life toll of endometriosis, where 1/10 women are affected, you have to scratch your head and wonder, "Why doesn't my doctor warn me about this? Why doesn't my doctor know more about it?".

I had to change gynecologists about 10 times before I found one who finally knew more about endometriosis than I did, and he is a national specialist. That is absurd--I am not a doctor and I do not pretend to be, I should not know more than one. My GP doctors often have to educated about basic aspects of it, and sometimes they have attempted to prescribe me medication that has been proven to intensify the complications of Endometriosis. With it being such a common affliction, it should be in the basic database of most practitioners. Even if the majority afflicted are likely to 'only experience worsened cramping and bleeding', they have a right to know the cause and how to approach treatment. Dismissing the pain and recommending a bottle of advil does not point a patient in the direction of actual relief. It's masking a symptom one cannot be bothered to investigate, leaving the woman vulnerable to further complications down the road.

The lack of initiative on the medical side fuels the lack of awareness in the general population. When you have so many with Endometriosis undiagnosed, it is less likely for people and family/friends to even know that they are directly affected by it. How is a campaign for awareness supposed to work when the doctors do not even care about efficient diagnosis? And campaigns for female-only afflictions are usually hampered to begin with, so where to even start? There are a few large endometriosis organizations, but they barely have enough funds to fund research, and awareness is non-existent.

As a last parting, I am going to narrate my own experiences of direct, unfiltered experience of sexism as an aware, educated endometriosis patient. I went to an old GP and asked for an ultrasound, as I was in an area where I had not yet found an OB/GYN and had felt another, large cyst growing. His response? "Cysts are a common problem in women, you need to learn how to handle and get over your female problems" and he denied me a referral for an ultrasound. He laughed when I said I had Endometriosis and said it was not a big deal. I wish I was exaggerating. I was too young and naive to realize how awful he was. Another doctor, a female OB/GYN was seen because I has having extreme cervical pain and nonstop bleeding, and I was worried my cervix was adhered or scarred or something of that nature, trying to find out what I could do to be in less pain. A summation of the experience: Her: "You have an STD", Mine: "but I'm a virgin, with Endometriosis," Her: "No, you have an STD." She refused to change my hormone medications, tested me for STDs, which were of course negative. She then talked about hypersensitivity and how I was mentally causing the pain. I did not return to her for the consult about the new hormones. Half my doctors told me I was exaggerating my pain, the other half regarded me as a hypochondriac. I work in medical research, I know what I deserve as a patient. I know every patient, male and female, receives some degree of belittlement from the health industry. But I also know when I was receiving less than acceptable care because of my gender. Oh, and let's not forget the refusal to consider a hysterectomy because I needed to have my own babies to be a whole woman (one doctor even laughed and said I did not know what I wanted because I was too young to have 'baby fever').

Endometriosis has a lot of problems, like lack of awareness and difficulty to detect/treat. But these problems and those specifically related to gender inequality would improve, if the sexism would in regards to treatment was addressed and improved (and maybe someday fixed).

I know I need to cite many of these stats/claims, and I will. Most are directly from studies or articles discussing them, but I am very sick and tired today so I just don't have the energy. The rage and frustration I felt just from writing this drained what little energy I have. For now, please just think about it, challenge what you see as questionable (I recommend Google Scholar for searches). You do not have to agree with my opinions, but I hope you will consider them.

Saturday, February 8, 2014

Butternut Squash Soup

Am I really getting back to recipes? Yes! Why? Because I figured out my problem--I've been lazy. Really lazy. So, my offer, my apology, is my delicious gluten-free butternut squash recipe! I make it in a crockpot (simple and easy) but you can adjust it for a stovetop dish. It will take shorter but the flavor might not be as strong.

Ingredients:
  • An average sized butternut squash. Use a large one if you want the squash thicker, a smaller one if you want it thinner.
  • A quart of organic, gluten-free chicken stock
  • 1/2-to-3/4 tsp Better than Bouillon (gluten free & organic)
  • 1 tsp of thyme
  • 1 tsp of basil 
  • 1 tsp of oregano
  • 1 tbs butter
  • dash of pepper
  • 1-2 tbs olive oil
  • 4 chopped cloves of garlic (or 4 tsp of minced jarred garlic) 
  • 1/2 cup chopped onion (I prefer yellow)
  • Optional: extra 1/2 tsp of above spices 
  • 3/4 cup organic heavy whipping cream
  • dash of cumin
  • dash of nutmeg
  • Red pepper flakes to serve

Instructions:
  1. Wash the butternut squash (I prefer Citrus Magic, Veggie Wash, but you can make your own homemade stuff as well!). Cut it in half (horizontally), then cut off the stem and root. Three cuts total. 
  2. Peel the skin off. I use a paring knife. Be patient!
  3. Cut the peeled squash in half vertically. Scoop out the stringy insides and seeds. 
  4. Cube the peeled squash. Place the cubes in the crockpot. 
  5. Pour in the chicken stock and add the spices. Set the crockpot on high. 
  6. Chop the garlic and the onion. 
  7. Place the butter and olive oil in saute pan. Set the stove to medium low. 
  8. Wait for the butter to melt and spread evenly over the pan.
  9. Add the garlic, wait a minute for it heat. Add the onion. Optional: add the extra 1/2 tsp of first three spices.
  10. Cook the onion until it has yellowed/browned slightly. 
  11. Tip the saute contents into the stock pot, using a rubber spatula to scrap everything in. Mix the contents.
  12. Replace the stockpot lid, let everything cook until the squash is easily shmooshed. Took me about 3-4 hours. Add a dash of cumin and nutmeg. Cayenne pepper is yummy too!
  13. You now have two options: blend or smash. I took a wooden spoon, smashed the squash, then used an egg beater to smash everything up nice and shmooshed. It had a nice texture to it and I liked it. However, if you're a smooth textured individual, I recommend transferring the soup to a blender or (even better) using an immersion blender. 
  14. Garnish with red pepper flakes to serve. Choose how much based on your own spice preference. 

Thursday, February 6, 2014

Held to an Unfair Standard

When you are chronically ill, it seems like every time you pick up a normal bug, you’re held to a higher standard by both your body and the people around you. As far as your body is concerned, it already has a fulltime job managing your chronic illness, and throwing in a flu bug is an unauthorized increase in overtime. Every day, under normal conditions, an ill body does its absolute best to maintain homeostasis with a rickety system. By throwing a wrench in an already struggling system, you run a higher risk of it coming to a grotesque, massive, horrific, catastrophe.

Of course, dealing with the finicky nature of a dysfunctional human body is apparently not enough. In addition to the unforgiving body you are operating in, you have friends, family, and coworkers who are already near their threshold of ‘dealing with your crap’. Not that they don’t care. They can care quite a bit about you. But a relationship requires some give and take, and it can feel to them that they are not often on the receiving side. When coworkers have to cover your shifts, when friends have to constantly give you rides, and when family feels it can never ask for favors, only dole them out, that can be wearing. It takes good, kind, and uncommonly patient individuals to recognize the special qualities a chronically ill person can bring to the table.

When I get something as simple as a cold, I panic. I know that even if I take my medications, am religious with vitamins and supplements, I will almost certainly get bronchitis. It’s part of having asthma. But that’s not all I panic about—in the back of my head, I worry about the people I love and interact with and wonder, ‘Is this going to be the straw that breaks the camel’s back?’  I’ve cashed in too many favors, broken too many commitments, they’re going to be done with me. 

I hate thinking that way. I hate how often I look at my friendships and look at myself as a burden. I try to focus on my helpful qualities that make me a valued friend—that I’m a good listener, am accepting, patient, and have a strong desire to help. That I’m goofy and relaxed and will always try to make the ordinary more fun. But I cannot help but worry. I look at my relationships like I look at my body—that a common illness or flare up is going to tip it over the edge.

This kind of anxiety does not help anything or anyone though. I know it may be easy to say that, but when something unexpected happens, it can be hard to actually feel that way. To be calm about what’s happening and not look at it as ‘the last straw’. But I’ve begun to wonder though, if maybe that kind of thinking is what makes it ‘the last straw’.

If I’m really honest with myself, that sort of thinking is selfish. It automatically assumes what people in my life feel, what they can and can’t handle, and what they need. It assigns and projects my feelings onto the people around me. And rather than trying to do something about that feeling, it is sort of a surrendering attitude that precludes any efforts to help the situation. And it is a way to protect myself from feeling disappointed.

People have, in the past, gotten sick of being around ‘someone sick’ and punished me for a situation I cannot help (and would give anything to change). I have lost friends, been bullied, and been shut out. I try my best not to hold too much anger and bitterness against the friends who could not handle my situation. They were not strong enough. And they could not see my efforts to counterbalance the strain that my illness put on our relationship.

On the bright side, the friends that I have years in, the associations that I’ve formed now, have stood many tests that my illness can put on relationship. I know that they are real. And I owe myself and the people in my life a chance to be tested by the challenges my body brings. Not only do I owe them trust when I am feeling sick, but I should be giving them extra love, attention, and effort when I am feeling well. Not solely because I am ‘setting the balance’, but because I am happy to have a chance to show them the same care and attention they give me when I need it.

I think people who are ill feel this anxiety with relationships that there is a balance, like a bank account, and they are constantly overdrawing. But no one likes to feel like a favor bank--and that is exactly how friends feel when you constantly worry over this 'balance'. Just be a good friend, a good coworker, a good family member. When you are sick, feeling blah, feeling good, and when you are ill. Needing extra help does not make you a bad friend. It can be hard to remember, but people who understand your condition know what they are getting into when they decide to associate with you. And if you do not give them the opportunity to support you in your time of need... then you’re not really trusting them to be your friend, are you?

I have a lot of people in my life that I choose to be close to. And while many of them may be sick of my sickness, I don’t feel like they’re sick of me.

Monday, January 20, 2014

The Good Versus Bad: Make Sure YOU Win (Part 2)

[Note: Right now is not the time I want to spend lamenting over my absence and explaining the reasons behind it. So if you wish to know, keep your antennas tuned and eventually you will see a post on it. For now, let's focus on Part 2 of my last post!]

Anyone else Doctor Who fans? I love this great quote from an episode from season 5 of the new series:


The Doctor: "The way I see it, every life is a pile of good things and a pile of bad things... The good things don't always soften the bad things, but vice-versa, the bad things don't necessarily spoil the good things and make them unimportant." 


I love that quote. I love everything about it. In the episode, he is referring to the tragic suicide of Vincent Van Gogh. For those unfamiliar with the show, The Doctor can time travel, and he and his companion, Amy, meet Vincent. While visiting, they all team up to defeat an adversary and, afterwards, show Vincent his future as a great, respected artist. When this does not change the artist's decision to end his life, Amy is devastated, thinking their visit had no impact on Vincent's life. That is when the The Doctor responds with the quote above. And he's right.

Sometimes we cross over these piles of good things and bad things, and we muddle them up together. And because negativity has such a profound effect on our perception of life, it can occlude and cover up the many good things that exist. Even though the negative parts of the world do not diminish what is good and positive, it can be difficult to see because negativity calls our attention so profoundly. The key, the secret then, to having a good, happy life, despite everything bad that may happen, is to find a way to sift out the good and bring it to focus.

Ultimately, being happy is a choice. It might be an easier choice for some (and I will not pretend everyone is equally advantaged/disadvantaged in this regard), but it is a choice and it is one you get to make for yourself. It can be frustrating--while some people seem to not even need to try to be happy, others chase it their whole lives and never find it. I have been angry, depressed, sad, frustrated, bitter, melancholy, and all of the above, and I must conclude that it is infinitely better to be happy. Is it easy? No. But it is better. And I want to try and remind both my self and others of ways to be so.

In the previous post I mentioned my use of positive statements about my life to keep my wandering mind focused on what I have 'going for me'. This is just one of many methods/techniques I use and am fond of for keeping positive and happy despite the unfortunate things that have happened to me. This isn't so much a method for long-term, enduring happiness, as it is just ways to stay positive. But being positive does make being happy easier. In the spirit of this, I have put together a list and I hope each of you may find at least one thing you wish to try to improve your positivity and happiness too.

1.      Positive Statements
a.       Say, out loud, the good things you have going on. When you vocalize something, you devote focus and motivation behind it that you cannot muster when simply thinking about it. You use multiple parts of your brain and give more substance and weight to an idea. So point out, to yourself, the good things in your life. Say them out loud. And do not say 'well, I have nothing'. There is always something. Avoid negative statements for the same reasons--you give an idea fuel when you pronounce it.
2.      Gratuity Journal      
a.       This does not need to be an actual journal. It can be a slip of scrap paper, a file on your computer, anything. The key aspect of this method is to simply write down the things you are grateful for. A lot of times we create these filters that minimize the significance of rather immense blessings/good things. When we become ungrateful, we become unappreciative of how wonderful some things are and in turn, become less fulfilled and happy from these aspects of our lives. So write it down. At least once a week. And when you are feeling particularly frustrated/unhappy, go back to your list to remind yourself of these things.
3.      Help Others
a.       Along with the gratuity journal, this is to help increase your appreciation for the good things in life and to also increase how fulfilled you feel from them. When you give out good things to others (such as your time, sympathy, or finances) it increases the value of these things to your own self. Not to mention it just feels good. And do not fret if your condition or mood keeps you from hitting the streets to help others. There are many volunteer opportunities on the net and also people looking for a friendly pen pal to brighten their day. Look around for opportunities, and help others feel happy in the process.
4.      Exercise
a.       Sometimes there simply is not enough blood in the brain for us to look at things objectively. When the brain suffers physically, it suffers mentally as well. For example, depression is characterized by reduced size and activity in certain parts of the brain. One of the best ways to nourish the brain and encourage healthy growth/function is exercise. So whether it be yoga, swimming, a run, a walk in the park, get off your rear and exercise at least 20 minutes a day to be as happy as possible.
5.      Relax
a.       Stress has a way of working itself into every aspect of life and gunking it up with its toxic effects. While stress can be beneficial in small, managed quantities, it becomes a real problem when it starts interfering with our mental and emotional functioning. Bypassing stress to feel happy is not easy, and most times it is not so simple as erasing the source of the stress. Taking control of life’s stressors is often a lengthy process, and there must be a way of dealing with the stress while going through the motions to mitigate it. Which is why relaxation is so important. A break from stressors in order to feel positive emotions without the interference of worry. So take a hot bath with candles. Or chop a lot of wood. Bike in the outdoors. Or paint a picture. Whatever you personally find relaxing, do it, eschew your anxiety, and enjoy the peaceful time.  
6.      Laugh

a.       Smiling alone releases endorphins, improving your ability to feel happy. Laughing is a powerful reflex for happiness, even when physically driven. So laugh, be goofy, silly, whatever, and try to make yourself laugh for several times a day. There are many hilarious blogs/comics that can make you smile and you can exaggerate that into a laugh. At first it may feel silly, but eventually it becomes reflex and you will find yourself feeling laughter more intensely and happily as time goes by. If you’re having an especially bad day, just start giggling. Feels weird, but that odd, awkward feeling in itself will eventually drive you to laughter. Just try it. Practice it. Make it a habit. Laugh out loud!

I hope you find at least one of these items worth giving a try, and if you wish to add to the list, please feel free to comment or email me at Bedriddenhead@gmail.com. I hope you can find a little positivity from this and wish you luck on your continuing search for happiness. Thank you for reading!


Note: I want to clarify that depression, chemical depression, is a heavy filter that can make the perception of happiness very difficult. These things can be therapeutic and help, but it is still important to seek professional help in regards to that serious condition. Having been depressed myself at times, I do not want anyone to feel I am making light of that condition in this post. Being said, I did overcome it and am very happy nowadays! You can do it too!



EDIT: One last thing to add--always remember that being happy is for you. It is not something you owe others or should be done out of social expectations. Trying to be happy for someone else just does not work; it must be for yourself, or else it cannot be real. Because it must be rooted deep inside you. So please, if you are pursuing happiness, please do so because you yourself made the choice to out of your own desires. I fully endorse pushing yourself to explore ways to motivate that decision, but come at it in your own time and way.

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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.