Saturday, December 15, 2012

Women's Fashion and Pain

Problems with Clothing
One of the most ridiculous/silly inconveniences from having endometriosis and gut issues is my restrictions for clothing. Yes, even getting dressed in the morning can be a stressful experience! Not only because of standard internal mishaps that anyone can experience (e.g., bloating from a period so jeans are too tight, gut pain from a bad meal), but there are also many additional, illness related problems that can make certain clothes off limits at times.

My endometriosis pains are largely in my lower abdominopelvic quadrants (i.e., below the belly button). I have scarring and nerve damage in the area as well. Sometimes that pain and inflammation makes wearing slacks/jeans impossible. The tight stiff bands, as well as the increased tension from fastening buttons, can make for a horrendously painful experience! Pants that ride higher are also off limits, due to gastric issues. Above my belly button, any tightness around my waist can cause acid reflux and irritate ulceration damage from IBD. What's a girl to do?

The Value of Casual Dress and Self Care
I personally attach getting dressed with self care. It is a gift I give to myself and my mental well-being. Even casual wear has value in being a regular ritual and sign to ourselves (and others) that we care for our body. In my own life, wearing pajamas or sweats 24/7 is not an option; especially at work or when out on the town. Not to mention, I like to avoid awkward moments such as when my 95-year old grandmother commented on my getting dressed as if I were heading to my prom. I had been home sick for a while, and was seldom wearing clothes other than pajamas due to pain. However, one day I put on athletic shorts and a t-shirt. She was so impressed by my being dressed that she gave me the genuine, well intended compliment of, "wow, you look nice today, did you get dressed up!?"... thanks Grandma.

A Guide for Dressing Around the Pain
So... where is that balance? How can a gal look cute but be comfortable, and help disguise the fact that her insides are tender, swollen, and miserable? I did some digging around, asked other women who experienced some of the same issues, and these are some suggestions that I came up with. I hope you find it helpful and interesting--feel free to add and make this a better list!!!

--> Leggings, Leggings, Leggings!!!           
  • This particular fashion trend has pretty much been my saving grace. Leggings are made of knit fabrics, so they're stretchy and non-restrictive. They come in fun patterns and colors and are cute and fashionable. You can dress them up or dress them down. You can wear them with long shirts/short dresses for a more modest/mature look, or rock it with a causal tee or top. Best of all, you can keep cute all while keeping the comfort of pajamas! 
--> Comfy Dresses
  • My whole life I have been a fairly big tomboy. As a child, I actually cried over having to wear dresses to church and thought they were the silliest things to wear. Now, as an 'adult', I have to admit that, while I am a tomboy in actions, in dress I am a frilly girl. I love dresses. They can be well fitted and meant to impress, but they can also be relaxed, comfortable, and still flattering. Skirts can be wonderful too, but some days I just need something flowing over me and nothing pinching. Dresses are perfect for days where a lady cannot handle something against her stomach. And, of course, they are always in fashion and come in many varieties. Best of all, I have always found it easy to find cute/flattering dresses at local thrift stores. I've got at least ten dresses for less than $5 each, and I always get compliments on them. I think its because dresses are more about how they fit 'you', and not so much about the newest/most expensive/trendiest types. So try and find something that fits your style and your mean body! 
--> Yoga Pants
  • The yoga pant craze that has swept the country/world has been an awesome benefit for many reasons. First off, properly sized/fitted yoga pants are incredibly comfortable and do not constrict the abdomen/pinch anywhere. There bands tend to be wide, which helps to distribute the pressure across the waist and a tender belly. But there is more than that. They are relatively cheap, they are all the comfort of sweat pants without the negative perceptions, and they are incredibly flattering of a woman's body. On top of that, any age group can wear them and still look fabulous. And, compared to leggings, they tend to be a little less form fitting (which can be better for certain situations/settings). Whether I'm bloated or in pain, these babies are perfect. 

--> Pajama Jeans
  • I will admit that I have never tried these things, so I cannot personally say what they are like. However, I have had these recommended to me by other women, and they think they're amazing. They give the appearance of real jeans while fitting more loose and have 'pajama' fabric. I would love to give them a try for curiosity's and comfort's sake. My advice is to remember that these run small (size-wise) and make sure to wash them inside out.
--> Loose Underwear
  • Sometimes a woman can attribute pain to tightness of her pants when, in fact, at least part of it could be coming from the underwear she wears. This might sound silly, but after I first became suspicious of my fitted panties for causing problems, I tried some different options. I was surprised to find that what I wore under my pants had a real effect. I have changed the kind of undergarments I buy (staying away from tougher bands and aiming for stretchier/higher quality fabrics). Remember to stick with cotton, avoid bands that cling tightly, and to get the proper size. What does this have to do with fashion? Well, I personally like having cute underwear and try not to buy 'old lady garments' or 'parachute panties'. There are plenty of fashionable/comfortable bikini/thong styles out there, but remember not to get them tight or stiff, and always buy the right size. 

Tuesday, November 6, 2012

Finding a Job while Coping with Illness

Before endometriosis really hit me hard, I worked as a lab researcher and was on my way into a promising career in medical sciences. However, life has a way of screwing up plans, and, for 1 1/2 years, everything I wanted was put on hold. I needed to reduce stress and I was forced to work a menial job at a farmers market. School was too intense, so I had to take a year off. All my extra-curricular activities (as a research assistant or volunteering in schools and hospitals) ceased. To any objective observer, I became a slacker. Unfortunately, there is no check box in an application that says, "I was struck by debilitating illness and had to take a temporary vacation from pursuing my goals."

I cannot think of any good way to put in your resume that you are not responsible for a gap in your work history. If I did put that an illness disrupted my life, then I would appear as an excuse maker or undedicated, and employers would be less likely to hire me. I would give the impression of being unreliable. They would also wonder when I would be 'struck by illness' again. Not to mention it is private information. I had to let my work speak for itself and avoid blaming any shortcomings on my body.

How can we recover from the damage that illness does to a career? Let's be honest, illnesses like endometriosis are not cheap (the treatments, medications, procedures, etc.). Illness and disability can also make it harder to perform well. The expense requires a good job, but the cause can make having a good job really difficult. Jolly good.

To help give hope, here is the advice I followed to my current job. If anyone would like to add further commentary or suggestions, feel free to add at the bottom or email me.
  1. Create an impeccable resume. One that employers will remember and respect. CareerOneStop.org has a helpful resume guide that gives step-by-step instructions and advice on how to write this. Even if you already have a resume, you are always able to improve it. 
  2. Write a cover letter for every job. Even if they do not request one, even a short two-paragraph explanation for: (1) why you are applying for the job and (2) how you are qualified, can set you apart from other candidates. Additionally, it reinforces that resume gaps were circumstantial, not 'laziness'. 
  3. Peruse multiple job boards. I've looked on sites from Craigslist to LinkedIn, Indeed to CareerBuilder,etc. etc. Every site has different opportunities and different methods of browsing. You are more likely to find a job that fits if you are willing to explore various sources. 
  4. Find ways to keep a good attitude. One of the hardest parts of job exploration is the constant rejection and being ignored. Or, even worse, when you receive a praising response, and you realize someone is trying to scam you. Every job application is an opportunity to learn and grow. It's a hands on way to learn and study the best methods for obtaining a satisfying career. And remember, the frustration comes from when a goal we desire is being blocked. Focus on overcoming that block, work hard towards your goal, and look forward to that extreme satisfaction when you reach the finish line. It's a great feeling!
  5. Apply in person whenever possible. Online applications are easy and convenient and do not really prove sincere interest. But if a company offers a way to drop off an application, it can be a good opportunity to put a face to the resume. Often, these online job searches give addresses/locations of the company you are applying to. I advise you to print up your cover letter and resume on some professional quality paper, place it into a nice folder or large envelope, and drop it off yourself (preferably, not in sweatpants). 
  6. If you need more education to further your career but do not have the medical health to attend full time school, consider night classes or home study. I am finishing my remaining courses via independent study. It is a great way to attain your education without endometriosis forcing you to drop out or something. 
Right now, my  job is to make my cohorts see that I am determined and hardworking. Endometriosis does sometimes make me unreliable (unfortunately, I cannot control when a bad episode/flare up strikes), but it has also made me strong, conscientious, capable, and more productive when I am healthy (to make better use of lost time). If people do not recognize the good qualities in an individual who has suffered from illness, then it is simply up to us to make those qualities evident. 


Saturday, October 13, 2012

Sleep Restriction Therapy

Insomnia is a common symptom of Endometriosis and, to be honest, most chronic illnesses. About 30% of the general population suffer from it in some form. Especially women. Insomnia is a general term for difficulty with sleeping. This can indicate a lack of feeling rested, struggling with falling asleep, or waking up several times a night. To oversimplify, it is a pervasive feeling of sleepiness. It can be acute (brief), chronic, or in-between. On rare occasions, a person may have insomnia for no reason at all (no  mood issues such as anxiety or any medical problems to explain sleeplessness); this is called primary insomnia. Primary insomnia is very rare. Much more common is that someone has insomnia as a symptom of some underlying issue. Thus, when treating insomnia, doctors will often try to get at the underlying issue.

However, what if that issue is, in reality, quite unsolvable? When it is a symptom of an incurable disease, there really is not much that can be done about the cause. Treatment becomes about managing the symptom of insomnia because the disease responsible is hard to tackle. In these cases, relaxation/sleep hygiene techniques can be helpful, but some patients may permanently rely on sleeping medications. This is what I had to do for almost a year. Lupron had aggravated my insomnia into such severity that I became completely dependent on Ambien. I could go days without sleep if unmedicated, or at least was up until daylight. No matter what I tried (yoga, reset of circadian rhythm, exercise, sleep hygiene, etc.) nothing worked. It was awful. Only with Ambien was I able to get nightly sleep. However, Ambien does not really give restful sleep, and it leaves you groggy the following day. Its users risk serious side effects and it is habit forming. I myself developed a temporary dependence. Well, not wanting to sleep this way, I decided I did not want to live my life like this, and I sought aggressive help.

Cognitive therapy was my solution. My major was in Psychology, but my focus was in 'Neuropsychology: Brain, Behavior, and Cognition'. I relished reading research on brain plasticity and using cognitive therapy to change brain functioning. Thus, when my sleep doctor suggested this solution, I enthusiastically agreed. (The best part actually was that we could both use the medical terms and jargon on the subject and have pretty intense conversation over it, which I think was fun for both of us.). He very clearly communicated that it would be a difficult therapy to undergo and that I would not enjoy it. However, he also was fairly confident that it would work.

Cognitive Behavioral Therapy uses conditioning and thought exercises to change the reactions of the human mind. The therapy methods are simple but complicated, and today I would rather focus on this specific application. So allow me to try to focus...

My brain was not responding properly to bed time; rather than going to sleep, it would rev up. Not with worry or anxiety, but rather with simply more thoughts than I had time for. This was partially due to my body chemistry but also had to do with with my unintentional conditioning my body to only seek rest when relaxing--not to sleep. Too much bed-rest from surgery and pain, too many sleepless nights where I could not leave bed but could not sleep either, and, overall, just too much time spent in bed without sleeping, had taught my brain that bed time did not equal sleep time. With the underlying disease contributions to my insomnia, along with this bad conditioning, sleep, for me, became a dream (pun intended). So, the goal of this therapy was to change to how my brain reacted towards bed time. To compensate.

Note: I am not a health care provider and am sharing this information for informative purposes, not medical advice.

How it Works:

  1. The basic set up: I kept a sleep diary to track my progress, to give both my doctor and I an idea of what my progress was. It was also to establish a baseline (pre-therapy) of how bad my sleep issues were. I began practicing more ritualized sleep hygiene. I can go over this in a follow up post, but basically I had 'bed-times' for what activities I could do up until a certain time (e.g., I was not allowed to work on my book within two hours of bed time, same with class work). 
  2. I had to pick a five hour time frame in which I was allowed to be in bed. Any other time of day, I was not permitted to be in my bed. I picked 2:00 am to 7:00 am. Not only was this my only allowable bed time, but it was also my only allowable sleep time. No napping, no 'resting my eyes', no sleep whatsoever, except from 2:00 am - 7:00 am in my bed. This is how the sleep restriction takes place. And this is how you teach your brain that it has a specific time and place for falling asleep.
    1. I'll admit that for the first couple of weeks, it was incredibly difficult to not accidentally fall asleep. I'd take my dogs on walks, clean the house, put on a loud movie, but while it seemed impossible for my brain to shut off at night, it loved to disengage during the day time. This is called delayed sleep phase disorder. More commonly, you would call a person like this a night owl. People like me can thrive on just five hours of sleep but we usually can't sleep until very late at night (e.g., five am), which does not fit the common schedule of the workplace/life. 
  3. The goal was to be able to fall asleep within 20 minutes of being in bed. If I could not, I needed to get up for fifteen minutes, leave the room, and then return. Why? Because this is part of teaching my brain that it cannot be awake in bed. When you 'lie awake at night' you are reinforcing to your brain that that is an appropriate activity in bed. 
  4. If, for three nights in a row, I could fall asleep within 20 minutes, I could take back my bedtime by a half hour (e.g., instead of 2:00 am, I could get in bed at 1:30 am). If I took longer than twenty minutes even for one night, I had to slide back to the previous slot (though not beyond the original 2 am). The goal was to get three nights in a row of quick falling asleep, because then I could get more sleep for that night and the following nights. This was a pretty good incentive. Additionally, it gave my brain the steady conditioning it needed to respond.
    1. Now, with the extreme sleep deprivation I was experiencing, you would think this would be easy. That within a few days I would be out in minutes. But I am talking about severe insomnia here. It took about four weeks before I was able to move my bedtime to 1:30 am. Usually, this therapy is only supposed to take about four weeks, so do not be daunted by my month of sleep deprivation. I have other sleep issues (sleep terrors, sleep walking, panic attacks, sleep apnea) so these all could have factored into the extra time. 
  5. Keep this pattern up until you reach your desired bed time. Until you are steadily able to fall asleep when needed, do not change your wake up time. If you wake up early and cannot fall back asleep, it is okay to get up early, but do not sleep in. Even if, for example, I had a late night out and did not get back until 3 am. I would still just get into bed and wake up at 7. The wake up time is not a choice. 
  6. Currently, my bedtime is 12:30 am. I should be at midnight, but I have needed to take a lot of pain medication this week (Ultram) and it makes me very sleepy, so I have been accidentally napping (Yikes!). However, I am not discouraged, because I am having an infinitely better time falling asleep than I was six weeks ago. I am more rested and look forward to bedtime.
Important Points
  • The schedule is everything
  • Get daily exercise in some form. Sleep is always easier when you exercise; just make sure not to do it too late in the day (as this can keep you up). 
  • Practice sleep hygiene; these are rituals that help cue your body it is time to settle down. For example, nightly showers, brushing teeth, dimming the lights, etc.. I really think I should do a post on this ASAP, and I will link it from here once that is done.
  • Do not get discouraged; it is a hard therapy to stick with, but the results are invaluable. 
  • Make sure those around you respect what you are doing. I warned my family and loved ones that I would be doing sleep therapy that would probably make me really cranky. I communicated that I always needed to be up at 7:00 am. Little things like that can garner some support and/or, at the least, respect for what you're doing. 
  • Keep a daily journal of foods/activities/pains/sleep, if you suspect there is some pattern contributing to your sleeplessness. I didn't keep up the sleep journal because there really wasn't a pattern. Just random issues that would pop up. However, I'm sure it would have been more helpful had I done so (and I regret discontinuing it). 

So there it is. My sleep therapy. The thing, the first thing, that my insomnia has EVER responded to. It's been amazing. I look forward to sleep now. So please, if you are struggling with insomnia, I highly recommend giving this a try. If you have any questions/comments/concerns, please feel free to contact me (either by commenting, my Facebook page, or my Email). I have a follow up with sleep doctor soon and will see if he has any comments/advice he would like to pass on. Thank you for reading and good luck!!!

Side note--This has been an incredibly popular post, so I will be writing another to provide more information. Please don't forget that I am not a doctor nor your doctor, so always remember to check with a healthcare provider, before making changes to your health care routine!


Sunday, October 7, 2012

The Bed Head's Personal Sushi Recipe

Note: I'll add pictures and a video to this post, the next time I cook this dish

I wish I had a non-blurry photo
of this delicisousness!
So making Sushi is one of my favorite meals to 'cook', because it naturally gluten free, delicious, and easy to make healthy. More often than not, when you go out for sushi (American sushi) you get fried rolls stuffed with cream cheese. And while fried panko on rolls is fun, it's hardly nutritious or gluten free. And, as an added benefit, you will get fish oil and omega fats naturally!


First you'll need the basic ingredients. I recommend my favorite salmon roll, but you can get creative after this first try. Pretty much any roll you'd like to try (e.g., crab salad with carrots, cucumber, and radish) you will be able to make. It's just a matter of buying ingredients you enjoy, are healthy, and are easily sliced and placed into the rolls.

Ingredients list: 

For Sushi Rice Wrapping:

  1. 10 sheets of Nori (different seasonings/qualities, find one you enjoy!)
  2. 3 cups short grain rice (AKA sushi rice) 
  3. 1/3 cup of Mirin 
  4. 3 T of sugar
  5. A sushi roller (It is a sheet of bamboo sticks tied together, it looks like this)
  6. Optional: Wax Paper and Saran Wrap
For Sushi Fillings: 
  1. 4-8 ounces of Sashimi Grade Salmon (make sure this is the right cut/quality/freshness for sushi)
  2. 3 T of Low-Fat, Organic Cream Cheese (the spreadable kind; can use more if desired) 
  3. 1 English Cucumber 
  4. 2 Carrots
  5. 1/2 c Cilantro
  6. 1 bunch of Green Onions
  7. 1-2 Avocados 
  8. 1/2 c Bean Sprouts (optional) 

Directions: 

The Rice: 
  1. Prepare the short grain rice in water, using a rice cooker or a pot. If using a pot, bring 5 cups water to boil, add rice, cover, and let it cook/simmer appropriately. Do not add salt to the water. Do not let the water boil over. It should take around 11 minutes to cook, but this time varies a lot. 
  2. Mix the 1/3 cup of Mirin with the 3 T of sugar (you can alter the amount of sugar added based on the sweetness of rice you desire). Mix until sugar has largely dissolved. Sometimes heating the mirin slightly first can speed up this process.
  3. When Rice is finished cooking (and has sucked up all the water), toss it with the Mirin-Sugar mixture. You can do this in the pot or in a fresh bowl. Toss it well, making sure to spread the mixture throughout. After you have adequately mixed the mixture, the rice can sit with plastic wrap over the top to prevent it from drying out.
    1. *Note: the rice must be cool when rolling the sushi, so I usually make the rice earlier in the day. If you are rushed for time, you can place the covered rice mixture into the fridge. This can greatly reduce cooling time. 
The Rolls Ingredients:
  1. NOTE: When cutting up ingredients, it is important to keep in mind that you want to chop them into shapes/lengths that will best fit in the 7 inch rolls. So, after peeling the carrots, I cut them length wise into maybe half centimeter widths and 7 inch lengths. If your vegetable is not long enough to be 7 inches (e.g., the avocados) then just cut it as long as it can go and you can string them along the inside. Remember, the thickness determines how much of that ingredient will be in each, individually cut roll. So, use your judgment on how much 'carrot' you wish to have. 
  2. To prepare the avocado: cut in half lengthwise, around the pit, and turn the sides in opposite directions to peel them. Remove the pit. Using a somewhat dull knife, cut vertical slices in your desired thickness along the inside of the fruit. Do not cut through the skin. Then, you can run your fingers under the cut pieces, and push them out of the skin. Ta-da! If any are too thick, just adjust, but this way you can get the longest cuts possible. 
  3. Preparing the green onions: find which part of the onion you prefer--if you like the white ends better than the tops of the greens, then make sure they're present. Personally, I cut off the whitest parts for this. I feel they are too bitter. 
  4. Cilantro: if you like the strings of cilantro, then just separate out the bunches into individual lengths. If you prefer only the leaf, pull them off individually. If you like to mix cilantro with the added cream cheese (thus using the minimal amount) then chop/mince it and mix it into the cream cheese. 
  5. Carrots/Cucumber/Bean sprouts: these are pretty self explanatory. Cut off parts you don't want. I advise peeling the carrots. Cucumbers can be watery, so try to get as much of the outer ring as possible.
  6. The fish: make sure you are using a sterile area (as meat is a grand target for germs). I always place a few layers of wax paper over a clean cutting board. This protects both the fish and the cutting board. I slice the salmon into long pieces (like the vegetables) with a good fish knife. Because I want the meat to be the focus of the sushi, I cut them into almost 1 cm thick pieces. Again, personal preference. If you have less meat, I recommend 1/2 cm, to make it last. 
Rolling the Sushi:
  1. In a clean area, lay down some wax paper (if you prefer easy clean up) and set down the bamboo roller. Place a similarly sized sheet of cling wrap over that bamboo roller. This will keep the rice from sticking to the roller and can better prevent tears in the rolls
  2. Place down 1 sheet of nori on top of the bamboo roller (and the saranwrap). 
  3. Using a wooden spoon, dish out the rice and spread it over the nori paper. Carefully, as the seaweed paper is delicate. Spoon on your desired thickness. I do about 1/4-1/2 an inch
  4. At the top, spread out our desired amount of cream cheese. I just barely spread some over, as I do not like it much, except it adds a great richness in limited amounts. 
  5. Line up your ingredients along the top, in an even line. Make sure that each ingredient is present over the 7 inches. Remember, you'll be slicing this up, and if the ingredient is missing from that slice, you won't taste it. I try not to over load this amount, as you have to be able to roll it up. Generally, I do one line each of included ingredients. 
  6. Using both hands, carefully fold over the top of the bamboo roller, rolling that first layer of ingredients into itself. The idea is you are trying to tuck the roll into itself. This can take some sliding and adjusting. Once satisfied, press down. 
  7. After that first press, slowly work on getting the entire length of nori/rice around that initial fold. Try to use even pressure, to encourage a round shape. This honestly is a trial and error sort of thing. Hopefully, when I get some video, I can better show how to do this step. 
  8. Eventually you will reach the end of the roll. Take that, place it at the top of the bamboo roller, and do a complete, even wrap around the roll. Press firmly, though not too hard (you do not want to spill out ingredients!).
  9. Unroll your bamboo roller, take a look at your first roll! Ta-da!
  10. Using a sharp, serrated knife, carefully cut off 1/2-1 inch rolls from the main roll, horizontally. Now you have your individual rolls! Wow!
  11. Repeat until you have used all your ingredients!
  12. *note: if you run out of most the ingredients but have left over rice and salmon, it's super easy to make nigiri sushi with that ;). Just shape the rice and plop the fish on top!
Boyfriend is a willing helper (AKA captive) 
Serving Suggestions
  • Use what ever you like to serve/dress/eat the sushi. Personally, I like to use chopsticks, teryaki sauce, with a little soy sauce and wasabi. Enjoy your feast! 
  • Extra toppings: Salmon roe, wasabi, fried in brown rice flour, Sriracha sauce, soy sauce (yes, there are gluten free kinds!), cooked ginger, cooked cabbage... the possibilities are endless!


Saturday, October 6, 2012

Myths and Facts of Endometriosis, Part II

The last article received a lot of view, so I am hoping that means this topic is a helpful one! If anything, it tells me that there is good reason to cover more of these. For better or worse, there are many myths about endometriosis, and there is plenty of material to cover. Even if I did a hundred posts, I'd probably never cover them all. But I'll try my best to cover the ones that stick out to me!


Myths

1. Endometriosis is Very Rare
  • Endometriosis is the most common gynecological disease out there. Prevalence estimates run anywhere from 7%-10% of the female population (1). 
  • Prevalence of endometriosis is high in women with pelvic pain. For example, in a study of female adolescents with persistent pelvic pain, 70% were successfully diagnosed with endometriosis (2). 
  • Despite how common it is though, many people have never heard of it; not even once. This unfamiliarity is unusual, considering its high prevalence. To put it in perspective, consider the prevalence of commonly known disorders/diseases: color blindness (4.2%), asthma (3.5-5.5%), shingles (0.18%), and tonsillitis (0.7%). I could include many more diseases, but I am trying to use milder examples to prove a point. Why is endometriosis relatively unknown in comparison?
  • One hypothesis is that it this is partially due to cultural norms discouraging women from complaining about reproductive pain. Even if that pain is beyond 'typical'. While women are encouraged to share relatively minor pains and frustrations, many cultural norms discourage expressing severe pain or hardship. Particularly regarding pains associated with 'reproductive functions'. These pains are largely considered 'part of being a woman' and something to be endured (3). Consequently, many women do not speak out or are afraid of having their fears/discomfort downplayed. And without proper reports of endometriosis pain and symptoms, the severity, disruptiveness, and extensiveness of endometriosis goes unheard. 
  • The stigma of 'grossness' can hinder public discourse and awareness of an illness. Put simply, disease attractiveness can affect its attention. Diseases and disorders with relatively 'clean' symptoms are commonly discussed and campaigned for. Unfortunately, embarrassment for messy or unnattractive symptoms can reduce the willingness of patients to share their experiences. For an easy example, consider the difference in awareness for colon cancer and breast cancer. Somehow, I do not imagine 'Think Brown' would experience as much success...
  • Additionally, there is the problem of a somewhat flagrant attitude towards female pain in medicine. Women, more often than men, are regarded as inaccurate in their perception of pain and are less likely to receive adequate pain treatment. Women are seen as 'whiners' and are consequently ignored. Unfortunately, even if women with endometriosis are communicating to doctors and media that they are in immense physical/emotional pain, the problem does not receive the acknowledgement/belief it deserves (4).
2. A Hysterectomy Cures Endometriosis 
  • Everyone with endometriosis has probably experienced pressure from their doctor(s) to get a hysterectomy (5). I have several times over. Always with the reassurance that 'if I haven't found relief, I need to look at this long-term solution'. They are 99% certain that my pain would go away. And, up until I more seriously researched the issue, I was ready to schedule surgery. I've got to say, I was 22 years old and it was devastating to decide right then that I was never going to try to have children and would be under permanent menopause. But I was willing. Until I found out that it was unlikely that I would be undergoing a long-term solution. Especially because of my age--research has shown that younger age hysterectomies are vastly less effective at preventing future pain/relapse than later age hysterectomies(*). And, while hysterectomies do, on average, improve pain in patients, they are in no way an end-all cure. About 15% of hysterectomy patients report no change in pain and 3-5% of patients indicate a worsening in pain symptoms (6). This also ignores the damaging affects of early sex organ removal and the side effects of the consequential hormone replacement therapy. 
  • I really do not want to consider the sources of this myth. Of course, there is the research that shows that, on average, there is improvement in pain (which ignores about all the negative consequences aside from pain). I like to think that the majority of doctors believe they are making the best medical decision for their patients. I do believe that a person goes into medicine with a desire to help people. However, I have also read in places that there is a serious market for profit in performing hysterectomies. I do not want to report numbers and stats on that here, because the numbers really can't say much about the perceived motivations (assigning meaning to statistics is easy--confirming those meanings is a complicated issue). And I think it is easy for frustrated people to jump on the mob train and go wild. I just want to mention... that it is a possible money source. Look it up for yourself and make your own opinion, because I honestly can not trust my judgment in this case. 

Facts

1. Endometriosis is caused by Environmental and Genetic Factors (see Causes of Endometriosis
  • An important thing to remember with endometriosis is it is caused by an interplay of heredity and environment (7). Risk factors are still being studied and questioned by the medical community.  
    • Women with relatives with endometriosis have a higher likelihood of the illness (8). Women with a sister/mother with endometriosis are 7-10 times more likely to have it themselves, and there is gene linking research that has identified certain genes as problematic for endometriosis (particularly immune and reproductive genes). These studies show that environment alone cannot account for endometriosis development; there are genetic factors involved.
    • Well designed environmental research is a struggle. Obviously, it's impossible to conduct a human experiment (you can not trap a child and rigorously test what toxins cause endometriosis). Delays in diagnosis and limited availability for treatment also limit research (9). Survey studies, which study correlation of factors, are also difficult due to the extent of confounding factors. Confounding factors refers to things that are not readily apparent and can interfere with research (e.g., when studying drunk driving accidents, the time of night could be a confounding factor that only includes intoxication and skill of driver). It's hard to know what may be contributing to endometriosis, so there are many potential confounding factors out there. However, there are a few established risk factors, such as exposure to environmental toxins. 
  • What can be drawn from this fact? That a woman's development of endometriosis is not something she contracted, made bad choices for, or has any real control over. It's like children that develop asthma because of an in-city coal plant. They did not put it there and they certainly did not plan on developing asthma.  
    • The combination of genetic and environmental factors support that we should work to identify which specific toxins are especially hazardous and high risk for illnesses such as endometriosis. If we could better reveal what exactly contributes to endometriosis, we could better campaign for the reduction or elimination of the pollutant. 

  1. Gruppo Italiano per lo Studio dell'Endometriosi. (1994). Endometriosis: prevalence and anatomical distribution of endometriosis in women with selected gynaecological conditions: results from a multicentric Italian study. Human Reproduction, 9(6), 1158-1162.
  2. Laufer, M. R., Sanfilippo, J., & Rose, G. (2003). Adolescent endometriosis: diagnosis and treatment approaches. Journal of pediatric and adolescent gynecology, 16(3), S3-S11.
  3. Krotec, J.W., & Perkins, S. (). Endometriosis for Dummies. 
  4. Hoffmann, D.E., & Tarzian, A.J. (2008). The girl who cried pain: a bias against women in the treatment of pain. Journal of Low, Medicine, and Ethics, 28, 13-27. 
  5. Wellberry, C. (1999). Diagnosis and treatment of endometriosis. American Family Physician, 60(6), 1753-1762. 
  6. Vercellini, P., Barbara, G., Abbiati, A., Somigilana, E., Vigano, P., & Fedele, L. (2009). Repetitive surgery for recurrent symptomatic endometriosis: what to do? European Journal of Obstetrics & Gynecology and Reproductive Biology, 146(1), 15-21. 
  7. Dun, E.C., Taylor, R.N., & Wieser, F. (2010). Advances in the genetics of endometriosis. Biomedical and Life Sciences: Genome Medicine, 2(10), 75. 
  8. Simpson, J. L., Elias, S., Malinak, L. R., & Buttram, V. C. (1980). Heritable aspects of endometriosis: I. Genetic studies. American journal of obstetrics and gynecology, 137(3), 327-331.
  9. Mcleod, B. S., & Retzloff, M. G. (2010). Epidemiology of Endometriosis:: An Assessment of Risk Factors. Clinical obstetrics and gynecology, 53(2), 389-396.


Monday, October 1, 2012

Myths and Facts of Endometriosis, Part I

Before I begin this post, I wanted to quickly inform those of you about my progress with the cognitive therapy for insomnia. I've suffered awful insomnia since I was little, but getting so sick swung it into overdrive, and I became completely dependent on sleeping medications for any rest. A therapy that was meant to take four weeks has been in progress for about six, but I am finally beginning to see some improvement. If it continues to improve, I will do a post on how to conduct this therapy for yourself. Many people (especially women) suffer from insomnia without really knowing what to do for it. And with endometriosis, that is extra frustrating, because you are tired all the time but cannot sleep! But maybe I've finally found some answers--I look forward to posting successful results!

Now, here's the good stuff. Because of heated political proceedings and general misinformation surrounding disease, there seems to be a great deal of endometriosis myths floating around. Some are old, some are new. Some have been said by people who should know better and some are just gaining steam because social media allows incredible dissemination of thoughts without requiring any sort of credence. Hopefully, this will be a chance for me to address some of the rumors going about and give some proper information. I will address the issue, the facts/myths surrounding it, where it came from, and comments/research/anecdotes into the actual issue it may reflect. 

Myths: 

1. Endometriosis is caused by __________
  • Abortion: Apparently, this has been an especially heated issue because of some misunderstandings between republicans and democrats this current election. At the Democratic National Convention, Ms. Bruce discussed how treatments at Planned Parenthood made her daughter possible, because previous doctors had dismissed her endometriosis symptoms and not properly treated her(1). Now, because everything must be turned political, opponents of planned parenthood began spreading the 'fact' that elective abortion can cause endometriosis*. Now, thankfully, I have not been able to find any remotely credible sources spreading this 'fact'. It seems to be have largely been distributed by word of mouth. Yet, I did find some 'expert medical advice' sites describing the same thing(2); here, she says that the scraping of the uterus allows entry of endometrial cells into the muscular lining of the uterus. It does seem to be a believable misconception. 
    • Where does this misconception come from? Honestly, it's difficult to say, because there is pretty much zero research linking the two. My guess is that people have confused spontaneous abortion with elective abortion, and have also confused the order of endometriosis and infertility issues. Endometriosis does cause scarring of the abdomenopelvic cavity organs, especially reproductive ones. And this makes carrying pregnancy to full term sometimes difficult/impossible. The fetus can struggle to attach, develop, or maintain growth. When a miscarriage happens, this is considered a spontaneous abortion. Thus, there is a connection between endometriosis and spontaneous abortion, but even then, there is an order to the two issues. 
  • Teen Pregnancy: Wow, I never expected to see a myth like this. Because of the ridiculousness of the idea, I'm going to focus more on how it completely violates the biology of endometriosis, and then explain what may have given the idea ground. Many modern theories about endometriosis involve the idea that delayed pregnancy is involved with the higher prevalence of the disease. From an evolutionary standpoint, women began having children young, with frequent births/miscarriages throughout their lives. Their bodies did not evolve to have frequent periods and a long period of time between menarche and the first child birth. By comparison to today, we wait many years, and even age 18 is considered very young. These additional menstrual periods (which are actually extremely traumatic events to be happening on a monthly basis) give additional opportunities for proliferation and further damage by the disease. Giving further weight to this hypothesis is the evidence that often women get some relief from endometriosis by having children (i.e., pregnancy). Now, this relief time may vary from woman to woman, but there is usually a temporary relief of symptoms following a full term pregnancy. 
    • This myth, though somewhat present prior, was recently brought to attention by Dr. Satya Narayan, a clinical researcher(3). 
      • In his article, he says that risk factors for endometriosis include "...teenage pregnancy, poor personal hygiene, low body immunity, prolonged mood disorders and severe hormonal disharmony". The major hot buttons including teen pregnancy and poor personal hygiene. 
      • Now, in this doctors defense, let me explain how case studies work: they analyze individual cases, not overall populations, to draw ideas on a disease. However, most case researchers acknowledge the blatant lack of sampling in their research and use it primarily for commentary value and a launching pad for more extensive research. Issues arise when they talk about their research as if it is 'definitive', which this man did. He even says in his article that this was 'his experience'. To me, it seems egotistical and dangerous to regard personal patient experience as a reliable resource for a highly variable disease. 
      • Additionally, he seems to disregard the golden rule of 'correlation does not equal causation', meaning that, just because two events (e.g., endometriosis and hormonal disharmony) co-occur together, does not give any information on how the two are connected. You cannot draw any ideas on which causes the other, making it a completely unscientific statement to draw any conclusions from. Especially when those correlations are built on single case data. 
      • The fallibility of his ideas are supported by the widespread rejection and falsification of his conclusions. I would advise the doctor to better follow the standards of medicine, and to refer to experimentation and proper research before drawing extreme conclusions.
2. Endometriosis does not affect young women
  • This is not a myth I see everyday, but it is one I do see too frequently. This misconception that endometriosis is a disease that only appears later in life. I am only 23 years old and have had three surgeries and a Lupron treatment (the lovely hormonal chemo that ruined my life). Often, when seeing an unfamiliar doctor, their first comment is, "you seem way too young to have such severe problems with endometriosis" or even, "you're too young to have endometriosis". 
  • Where does this myth come from? 
    • It could possibly be because the longer endometriosis goes untreated, the more severe it becomes, and the more likely a woman will be seen for surgery (later on in life). (*explanation: I am referring to the cumulative effects of scarring and damage, not the increased growth of endometrial tissue). 
    • It could also be because our society has difficulty believing younger people's complaints (personal e.g., I had asthma attacks in gym at school and was told by the teacher to 'stop telling lies'). 
    • Another possibility is that younger women have yet to realize just how abnormal their menstrual life is. I had my first period at 11 and it was two weeks long. I had no idea that most girls my age had not even had one or had 2-3 days worth. It took me many years to realize that my symptoms were much more severe than 'average'. And no doctor was really concerned by my extreme reports of pain because I was not 'old enough' to have serious issues.
  • Endometriosis does affect young girls. An awesome 1997 study by the Children's Hospital in Boston worked to disprove this myth exactly. Many doctors use conventional therapy to treat chronic pelvic pain in adolescent girls. This study took a sample of 32 such patients, performed diagnostic laparoscopic surgeries, and found endometriosis in 70% of the patients(4). 
  • A study by Laufer et al. (2003) also supports that children and adolescents can develop endometriosis, even prior to menarche (a woman's first period). Girls as young as 8 years old were diagnosed and treated for endometriosis.(5)
  • If adequate progress is to be made on this disease, the first step is proper diagnosis and identification of those suffering. I've written before that earlier treatment results in better outcomes. If doctors were better educated on the prevalence of endometriosis in children/adolescents, or more willing to admit the possibility, they could be saving the well being of these women. After, all, if 7-10% of women have endometriosis  and it can develop around the earliest of periods, it would be better to identify this significant number of girls/women as early as possible. 
Facts:

1. Endometriosis pain is not 'normal' period pain
  • Whereas the slight pain/discomfort that can arise from a woman's monthly cycle is an inevitable part of Lovely-Miss-Mother-Nature, the life disrupting pain of endometriosis is not
    • Many doctors, friends, family members, anyone, sometimes seems eager to explain how every period is the same. Before learning to 'keep quiet', I was often given advice to 'walk it off' or 'learn to deal with it like the rest of us have'. Like many with a misunderstood disease, I have experienced some pretty insulting misunderstandings of how I am feeling.
    • Let me try to communicate how this misunderstanding can be perceived. I often sprained my wrists growing up (I loved to skateboard, but was not particularly good at it). My friends, more extreme riders than I, suffered significantly more injuries and breaks. If I had gone up to a friend with a caste for a shattered arm, showed him my bruised wrist and said, "you just need to tough it out like me"... that is pretty much how this sort of talk feels. 
    • A five week period does not feel like a five day period. Pain that makes you pass out or vomit or collapse is not the same as 'Advil' pain. Heck, even Advil pain could be a sign of minor endometriosis (which is more common than the more severe types). But needing a hot water bottle and needing a bottle of morphine is a completely different level of pain. It's not the same, nor is it normal, nor should it be considered normal. 
  • Whether the pain is tolerable should not be a viable measure of the presence/severity of endometriosis
    • Endometriosis is an extremely complicated disease in regards to its effects on pain. The extent/severity of endometriosis has little to do with the pain it inflicts(6), but the pain is a valuable indicator of the presence of the disease. If a menstural cycle is painful enough to disrupt daily functioning, even if it can be borne (i.e., forcing oneself through the pain), it is a good sign that something is wrong with a woman's reproductive organs and should be addressed. After all, various studies have shown that endometriosis is present in 2-72% of cases of chronic pelvic pain, with averages hovering around 33%(7). 
    • (This is an anecdote for myself here, but it seemed relative/valuable. Skip over if you wish!): My pain is a complicated topic for me. Something I've come to discover is I have a very high pain tolerance. I have played/competed in extreme sports my entire life. I have broken, dislocated, bruised, cracked, sprained, twisted, etc. pretty much every limb/joint/spot on my body. I have had reconstructive shoulder surgery. I have even needed plastic surgery, after tearing off my chin, to restore part of my face. I have learned to tolerate pain to the extent that my lifestyle required. Even though endometriosis pain has been so very different from this standard injury pain, I have still tried to force myself to cope as much as I can. I resist medications, rests, and treatments as long as I can because I do not want to be dependent on them. I have learned to live with a near constant throbbing in my lower cavities, painful movements, and difficulty with daily bodily functions, because that is how I cope. But this does not change that the pain is there or make it normal or make it acceptable. It drives me nuts to have doctors tell me how I should be feeling, because, really, it is up to my body and my brain to decide that. Even worse, if they completely ignore the factors of neuropathic pain and only evaluate inflammatory pain, they are dismissing a lot of the pain related to this disease. Research has shown, again and again, that severity of endometriosis does not correlate with severity of symptoms or pain. But I suppose a discussion about the dismissal of pain is for another day.

I have a fair number of myths/facts to write about with this disease, and it will be impossible to address them all in a single entry. Please check back, as I would love to explore it more in depth. Thank you very much for reading, please, if you would like any myths/facts addressed, please add them in the comments bar or email me, thank you!

*Personal Note: I am 'politically' pro-choice and 'personally' pro-life. I support the right to reproductive freedoms and medical resources, even if I would not choose it for myself (outside of medical necessity). Overall, I feel I do not have the right to judge another's choices or circumstances, I respect the right to control one's own living body, and I have seen many situations where abortion was a person's only option. I also understand that abortion is a difficult issue for many, and I can empathize that many people will disagree with me.
I am not trying to discuss the rights/wrongs of this. What distresses me, is that, out of desperation for political advantage, people are willing to disseminate incorrect/hurtful information about a disease they have no understanding of.
Endometriosis is not a political tool for abortion. People have passionate, complex reasons for the beliefs have surrounding abortion, on every side, and there is no valid reason to drag in an unrelated disease to the debate. Not only is it selfish, it is also particularly cruel to involve a disease with high infertility and miscarriage rates. It paints people with endometriosis as responsible for their illness and burdens. 

Sources:
  1. http://endometriosis.org/news/opinion/abortion-does-not-cause-endometriosis/
  2. http://en.allexperts.com/q/Abortion-1320/2011/7/abortion-endometriosis.htm
  3. http://www.international.to/index.php?option=com_content&view=article&id=6928%3Awhat-is-endometirosis-all-women-should-read-this&catid=84%3Ahealth&Itemid=276
  4. Laufer, M., Goitein, L., Bush, M., Cramer, D., & Emans, S. (1997). Prevalence of endometriosis in adolescent girls with chronic pelvic pain not responding to conventional therapy. Journal of Pediatric Adolescent Gynecology, 10(4), 199-202.
  5. Laufer, M. R., Sanfilippo, J., & Rose, G. (2003). Adolescent endometriosis: diagnosis and treatment approaches. Journal of pediatric and adolescent gynecology, 16(3), S3-S11.
  6. Vercellini, P., Trespidi, L., De Giorgi, O., Cortesi, I., Parazzini, F., Crosignani, P.G. (1996). Endometriosis and pelvic pain: relation to disease stage and localization.  Fertility and Sterility, 65(2), 299-304.
  7. Guo, S-W., & Wang, Y. (2006). The Prevalence of Endometriosis in Women with Chronic Pelvic Pain. Gynecological and Obstetric Investigation, 62, 121-130. 

Tuesday, September 18, 2012

Routines--Update!

What I want to do most today is write an update on my sleep entry I did awhile ago. I was writing about how endometriosis deepened the severity of my insomnia and how I was trying various tactics to manage said insomnia. I've had some interesting nights this past couple months. Crazy ones too. But I want to do some more research before I fully report on my current status.

First, I want to say that I am a woman of my word and have been working strenuously to address some of the issues I brought up in my last post. I was trying to explain that by forgetting my routines, I was losing the key tools that kept me in a (somewhat) healthy physical/psychological state. I realized that, by forgetting these, I was crippling myself. So I made some resolutions... and have been respectably following them! Here are my quick brags--because I want to give evidence that even in your worst state, you CAN tackle those issues! (note--all of these have improved my mood, every single one)


  1. I am consistently working out. My goal is at least one hour a day. Every day. On days I can't handle running/biking, I swim or do yoga. And, yes, I am running again!! I was so scared to start, I felt for certain that my abdomen would hurt or I'd burst a cyst or some other catastrophe. But, I tackled my fears, and just ran. I ran 2 miles the first day, 3 the next, 4 the next. I alternate my workouts (swim/bike/run/dancing/etc.), so this is over a couple of weeks. I honestly felt like I had climbed a mountain that first day. I was so proud of myself. I was scared, but I did it, and I am so glad I did. 
  2. I have reduced my 'wasted time' (e.g., web browsing, movies, video games, naps, etc.) and upped my productivity. Even when I do not feel like studying, I read rather than play games, or clean. I have done a lot of cleaning these past few days. Keeping myself engaged in productive activities with tangible/visible results has been both mentally stimulating and made me feel more accomplished.
  3. I have been more social. I have a confession. After Lupron, I wasn't able to remember people's faces. This could be a minor prosopagnosia or just simple anxiety interfering with my memory.  Meaning, the memory effects may have been temporary but I can't forget them so I struggle still. I don't know yet, but for now, social situations have been a little stressful for me because I don't recognize people's faces very well. So I had avoided situations. But now, I'm just diving in--because the only way I'll get better, is by practice! Not to mention it feels great to have the love/support/contact with my friends and family. 
  4. I have been sticking to routine bedtimes/wake up times. Which is why I now have to cut this entry short. It is time for bed. But thank you for reading, I will try and finish expanding this list tomorrow. 

Friday, September 7, 2012

Slipping Down the Slope: Remember the Routines that keep you UP

It's difficult to start this post. I'm a bit ashamed of what I need to say. Not because I'm embarrassed to tell, just disappointed that there is a story to be told.

A series of complicated external and internal events have perfectly led me into my first slump of the year. A few weeks of where everything seems impossible, where I am anything but adequate, and my problems gathered up together and morphed to form a volcanic mountain of doom.

I did not mean for this to happen--definitely not one of my goals. It was not a fast nor gradual transition; I just did not see it coming. It was such a steady slope that I could hardly sense the change. But I changed.

I am back on the path to being my optimistic, strong, happy self. It may take a while to fully recover though. The one downside of being optimistic/happy in a situation, is that, once achieved, you can easily forget how hard it can be to maintain base of contentedness. Without building buffers for sudden adversity or keeping up the routines that got you there initially, it can be deceivingly easy to slip back to prior conditions. I certainly was surprised when I really looked up and saw where I was. Or, more so, a person who cared enough to slap me around, pointed out to me where I had fallen.

I wasn't keeping up. I was not chasing my demons down and beating the tar out of them before they could get to me. And I've paid for it. I have been so tired, in so much pain, feeling so defeated and frustrated, and negative, all because I slipped out of giving my routine ass-kicking to my disease and struggles. Yes, I used a bad word. I'm sorry. It seems to be the only word that accurately describes my daily brawls with this disease's efforts to torture or kill me slowly. I can not let my guard down and let one thing slide pass--otherwise, I'm back at its mercy.

The pain, the withdrawal, the inability to move, it cycles upon itself, making greater and greater impressions with each successful pass. For example, I had gotten to a point of pain where I felt unable to exercise. The pain was largely because of stress, medication changes, and mood changes. Exercise would help, but I "couldn't" do it because it hurt too much. It all makes sense in your slipped mind, why you "can't" challenge your conditions, and that's how these facets of disease win.

Well, when I realized where I was, my first reaction was to of course blame the disease, blame others, withdraw, cry, wallow in self pity, etc. etc. etc.. But, I had a stronger, slightly delayed reaction. To go to the gym and beat my pain to a pulp. It killed and it hurt, and that night I thought, "it really might win". But the next day, I got up, felt a little better, and started tackling the other demons. I kicked my feeling of inadequacy in the teeth and started sending emails to set up possible opportunities/rejections. I sucker punched my depressed mood by trying to be more considerate of the moods of others and trying to lift moods with humor and laughter. I squashed my self centered wallowing by helping care for others around me. Of course these aren't uniform victories, and I could be doing better, but it's a starting point back to the condition I was in before.

It is so easy to rationalize the importance of not facing these demons that can keep a chronically ill person in a dark and painful place. But what is really important is recognizing that 'being easy on yourself' can ultimately lead to defeat. Laying down most of the day may feel like it's helping your pain. But getting your blood flowing, moving those painful muscles, bringing fresh nutrients and energy, will help more. Not to mention, the psychological effects.

I am an individual who is especially prone to depression if I am not exercising. I don't know why. Exercise is a great depression prevention tool for anyone, but it seems to be especially important in me. Because I can turn from this irrational, hopeless case, to a rational, hopeful, and spirited fighter, in a matter of days. At least an hour a day. That's all I need. Hormones and pain drag me down and I fight that off with biking and running and swimming and dancing... I get my body to move, my brain and moods fall in line. Because apparently, that's a routine I need.

My routines help me build steps and walls to keep me in a positive, healthy, content space. A launching pad to furthering my goals and growing past what drags me down. Discover what your routines are. Sick or healthy. Figure out what can keep you in the condition you desire. Routines are you bricks that can help you build that life. They don't guarantee what you'll do with that content condition or how you'll use it to improve other facets of your world, but they will give you the stable ground and protection you need.

Thursday, August 16, 2012

A Good Doctor is a Respectful Doctor

Today I want to write about something that happened to me. Something frustrating. I'm not sure if it will be much help, other than recognizing when something similar happens to yourself. I was not prepared, but I am proud of my assertive reaction.

Endometriosis is a frustrating disease. You do something to try and help, and it maybe works awhile, you feel better, and then something else comes along to knock you off your feet. It is almost like the disease has a sort of artificial intelligence. You find one way to combat it and it finds another way to strike back. So finding a way to effectively fight it can be pretty empowering and feels incredibly good. Additionally, getting some time away from the pain is great as well.

I was presented with an opportunity to effectively fight my endometriosis by getting an excision surgery from Dr. Arrington. Out of all my surgeries, this was my first surgery that I actually felt better afterwards. I was walking in days, was able to get a job, and re-enrolled in school. It was the first time a treatment actually worked for me.

Dr. Arrington is a speciality surgeon though, not a routine doctor. He's not the OB/GYN you see every month to modify medications and perform a check up. After Dr. Arrington was finished, I returned to my normal doctor. Both doctors approved of this agreement prior to my surgery (in fact Arrington is the one that referred me to the doctor nearer my home).

And this is where the event begins. I had a horrid endometriosis flare about a month ago. The pain and nausea were so horrible I lost almost ten pounds, I didn't leave my apartment for a week, I missed work and school... it was pretty horrendous. I made an appointment with my regular OB/GYN doctor instead of going to the ER; I knew that there was not much the ER could do for me. Their only treatment seems to be pain killers. And I hate taking those. For the pain relief to be substantial, it has to be morphine, and the side effects are no longer worth it.

I get to my appointment, start to be checked in, when the nurse begins to bombard me with inappropriate comments in regards to my temporary treatment from Dr. Arrington. She accused me of being selfish and using my regular doctor only because of 'what was convenient for me'. I tried being calm about it and explained how I wanted to try a different type of surgery since my prior two surgeries had shown no improvement. She then grabbed my face and lectured me about the surgical skills of my regular doctor, with the tone one uses when speaking to a toddler caught in the cookie jar.

Here I am thinking, "this is my body, my disease, my suffering, and no one has the right to lecture me on what is best for it.". I was so insulted, I grabbed my things and said (out loud now), "I'm sorry, am I not supposed to be here? Should I leave?". I was furious, and I made a decision to not accept such a sort of treatment. I was ready to leave, let them keep my copay, and get the hell out of there. If I had not needed a note for school, I would have just gotten up and left without a word and tried to find another doctor.

It's situations like these that get me frustrated. That doctors look at endometriosis patients as stock, as a monetary value in their revenue. Obviously, medicine is their profession, not their charity. Yet there is a division between the doctors that balance their desire for higher incomes with the desire to do the best they can for a patient. During this same visit, the doctor pushed me to go back onto Lupron (which did not help any and gave me horrible, permanent side effects) and to consider a hysterectomy (which research supports is not as effective if done before age 35). Both procedures also provide significant monetary returns. It was tremendously insulting.


Having any chronic illness (especially a painful/debilitating one) can really put a person at the mercy of his/her doctors. All access to medications and treatments are managed by these gate keepers. And sometimes, it seems they get more focused on what they think, rather than what their patients think. They do not always think of how these treatments can have horrific negative consequences, which is understandable since they have many patients and do not have to experience it personally. But they should still keep in mind that their patients are people that have to live with the choices they make.


On top of doctors sometimes being careless in regards to the unintended consequences of them ignoring patient opinions, but the patients, who have grown accustomed to being at their mercy, learn a significant sense of helplessness. They forget that they have choices and powers in what happens to them. Especially the sicker and more helpless you are feeling, the less capable you feel in questioning a doctor's decisions/actions. I myself have fallen victim to overly trusting a doctor's judgment and the consequences of my lapse in judgement have cost me dearly.

Here is my advice: question your doctor's decisions. Research what they prescribe. Be firm in what you want. And if they are not 'okay' with that, move on and find another doctor. Because it is your body and your disease.

I really like the doctor I saw. As a person, he is a nice and caring individual. And he is a good doctor. But I did not feel like my opinions/actions were being respected. So I'm moving on. No matter what your disease is, if you do not feel like your opinions are being respected, you should move on. Because ultimately, you are the one that has to live with their treatments. Do NOT be a passive receiver!

Monday, July 23, 2012

Emotionality

Sometimes my endometriosis (and its treatments) can make me exceptionally emotional or sensitive. Almost as if I am perpetually pregnant. While it can be obnoxious or overwhelming at times, it can also be surprisingly funny.

I am a bit of a sarcastic person, and I momentarily considered titling this post as: 'the thorns of the rose that grows from my bleeding heart'. However, I remembered that sarcasm does not carry well over writing. So I am going to say it outright: this isn't meant to be a super serious post, and I'm hoping you can laugh at it with me.

With endometriosis, I have to be on birth control. And with having a body that apparently hates being told what to do, I have had to try a lot of birth controls. Over a dozen, at least, and I've lost count. Some of those hormone mixtures have made me a little more emotional than others. Which is a bit of a struggle for me. I hate to cry, yet now I am doing it all the time, sometimes without reason! It goes against my personality. Going through such tough stuff, I needed to grow into a less sensitive individual. Not in regards to the needs of others, but in regards to my own feelings, and I have definitely grown a thicker skin. But when birth control is around... I become a crumbled mess of tears and hurt feelings.

One such example... my boyfriend and I rarely argue. Our issues are more likely to be resolved in small-to-moderate disagreements. I think we have only truly argued a few times. And I cannot remember ever shouting or being shouted at.
Well... this is the kind of relationship we had before I tried a certain birth control (I cannot remember the name--it's been banished from my memory apparently). While on this medication, I dug up old pictures of him and his ex-girlfriend, and demanded to know why he had been at a certain place at a certain time... YEARS ago... shouted that his family didn't like me... that he should just be with her if that's what he wanted... I was nuts. Out of nowhere, for no reason, I start bawling over lack of trust and I was flinging emotion-laden declarations of lack of support and not being understood.

Oh my gosh. I was crazy. I was so, sooooo crazy. I went from laid back and willing to discuss, to full on Spanish-soap-opera crazy. The sort of character you see in romantic comedies. The crazy one--not the main character, but her crazy friend. Or the crazy ex-girlfriend that the man is just getting over. The one with wide, twitchy eyes. I'm not sure if there was ever a time that my boyfriend was more grateful to live in a separate state. It may have saved his life in this case. We were both glad when that medication was marked a failure and stopped.

The one I am trying currently is a little more effective endo-wise (thankfully) and much less severe in its emotional effects. I no longer cry over him never buying me a teddy bear (which I don't even like, mind you). I no longer start fights with my boyfriend/family merely to start fights. So this drug passes in the crazy department.

But I'm still so much more touchy-feely than I used to be. I am definitely still sensitive... and I have turned into such a sucker for 'sad stories'. I used to be an action/comedy movie only lady, but lately... I've had... 'feelings'.

I had been in denial for months, but last week I had to admit something was wrong. I was watching Mulan. It gets to the part where she steals her father's armor and leaves to join the army. I start choking up. I'm holding back tears. A Disney movie made me cry. I felt like such a sissy.

After being a teenager, I had a few blissful years before I needed aggressive treatment for endometriosis. Years where I was on a mild birth control to keep from bleeding to death. I had made it past the years of teenager-instability and was loving the new constancy of my emotions. Yes, I still had the occasional melt-down, but it was a fully conscious choice.

Now, these pills... I swear that they have made me more sensitive than I ever was in my teen years! Not in a crazy, unstable way, so I suppose it's not a bad thing... but suddenly, I care so much about feelings. It is terrifying. I never know when I'm going to choke up and start crying. I had to explain some basic facts about endometriosis to a school official (the kind of thing I do routinely, trying to raise awareness) and I suddenly start blubbering. And while I tried apologizing and tried explaining that it was not even that upsetting, I burst into heavy tears. I cry over anything somewhat emotional or personal, the sort of things that never really got to me. And so far, there has been nothing I can do to stop it.

When my hormones get crazy like this, I seem to lose all self control when it comes to hurt feelings. And I've got to say, it has given me a new sense of sympathy and respect for pregnant women everywhere. Because that is how I feel now. I am on an emotional roller-coaster and never know where I am going to be dumped.

There is not so much any advice or wise words in what I'm saying. It is what it is. I think, if anything, I'm making a plea. Maybe it's not the same for everyone everywhere, but I feel like when my hormones get crazy, I have much less control over my emotions. My actions are still my own. I still have control over how I treat others, and I stand by something I have always said: a woman's period (or disease in this case), no matter how awful, does not entitle her to treat others badly. But I do not have as much control over how I react to things. And I must confess, hormones really do change how I 'feel'.

So here is my plea to people everywhere: let's give a little more allowance to sudden, hormone induced mood changes. Because holy cow, those little chemicals are monstrously strong. Please don't let my tears lower your respect for me!

Thursday, July 5, 2012

Why I try to Love my Body

Lately I've been taking a course at my university titled Human Anatomy. I had already taken human anatomy and physiology, but this course is a fast moving, intense crash course involving hours and hours of classes/labs a week. I get to study using cadavers and the whole experience has made me incredibly grateful towards those willing to donate their bodies to science post-death. The only draw back is that the majority of donations are men, so I have yet to get a good schooling in the crazy anatomy of the female reproductive system! LUCKILY, we have yet to do the reproductive unit, and apparently they have more specimens (both genders) for that unit. Anyhow, that is my longwinded reasoning for the delay in my posting--not so much because I've been busy (which I certainly have been), but I have been waiting for perfect opportunities to incorporate what I have been learning into my website. But now I've realized I just need to keep up my weekly posts and, soon enough, I will have all sorts of anatomical fun facts to bring to my web-table.

   So today is a rough update of my current situation and some thoughts. A quick snippet of advice.

   Currently, I have been doing much better in general but I have also had some issues. For example, I had a large cyst rupture during a bike ride a couple weeks of go, and that was a nightmarish day. I limped into my anatomy lab (after puking in the bushes from the pain) and took my quiz. Quizzes cannot be made up and because I was already there, I was determined to complete it. My entire body was shaking and my mind felt like it was between a fog and intense clarity. You see, my mind had to be clear--pain killers have acute effects on my memory, so I had to have a clean system despite the horrendous pain I was feeling. And yet I felt like I still could not think straight. The drug-fog was absent, but the pain burned so much that my brain was having trouble directing its focus. However, I finished, waddled over to my TA, and gave her three sentences, "Hi, my name is Ash. Do you know what endometriosis is? Because I burst a huge cyst and about to pass out from pain--sorry I'll be missing the rest of lab today."


What I undoubtedly looked like prior to the POP

    Unfortunately, since that cyst burst, I've been having intermittent issues with pain again throughout my whole* pelvic cavity. I'm thinking it's largely because of scar tissue agitation--I had a lot of neuropathic (nerve ending damage) from my endometrium. Likely it's still getting over the shock of having a cup of inflammatory fluid spilled all over everything. I really do hope it goes away. Regardless, I will continue to act as if it is gone. Because sitting around helps nothing. I have continued to bike around--when close friends question the wiseness of this (after all, my cyst burst from biking) I explain it like this: "that cyst needed to be gone. It was not supposed to be there. And if I hadn't burst it when I did, it would have just kept growing. It's better to get them gone ASAP. Even if it does hurt.".

     What has honestly been the worse lately is the functional colonic disease (FCD). Apparently IBS is listed as a 'type' of FCD, but there is also a 'type' just called FCD. Which is your entire gastrointestinal tract is jacked. The neurons throughout my gut are perpetually 'confused'. I honestly do not have much bathroom woes (I am careful with my diet) but it seems nothing can help the two worst side effects I've been experiencing: dehydration and chronic nausea. I have been throwing up. A lot. A LOT this past month. I have gone an entire day where I could not keep anything down. Well, I actually could not get myself to even eat. My doctor thinks it could have been caused by the constant inflammation of my abdominopelvic cavity. To me, the cause is somewhat irrelevant, because the damage has been done. Right now, we've been experimenting with various neuropathic treatments, but it's very much a long game. Until then, pepto and me have become close friends. My only advice is, if you are having gastro-symptoms at times unrelated to endometriosis, you may want to get that checked.

     Some good news though--I have not been to the doctors in about two months!! Yey! I need to make some appointments, but that is the first time in over a year where I have been able to say, 'I have not been to the doctor in quite a while.'.

    Now, here is something perhaps a little more valuable than my personal updates.

    With my gastro-issues, keeping a healthy weight has been pretty difficult for me. I've had issues of literally starving (as in my body was going into panic mode) and not fitting into my clothes. And I have had a lot of hormone-sick friends a long the whole spectrum of weight issues. One friend is very very healthy yet her hormones make it impossible to lose or maintain weight. It seems many diseases love to make it impossible for a person to maintain 'healthy weight' and force people into categories of 'too skinny/fat'. Of course there are many health concerns for one outside the 'standard' weight. I'm not even going to get into the societal mess of 'ideal body'. But i do want to touch on something.

I'm not really this crazy! I know--loving
my body does not magically fix all my problems. 
But it does make them easier to bear. Self hate 
would only be one more thing to worry over.


    When diseases take away the majority of your control over your weight, it can be very easy to get caught up in your 'forced body'. "I'm not skinny enough, I'm not curvy enough, my butt is too big, my boobs are too small, I don't have abs, etc."--all these make up a huge line of thought that reigns through groups of sick people. The insecurities that medically related weight issues can cause is impressive and scary. And yet, you would think with how much their bodies are putting them through, it would be a personal drive to at least keep the mental attitude healthy. But society can make that really hard.
 
     So here is what I am trying to say--if a disease has taken away physical control of your weight, maintain your mental control of how you feel about it. Because you deserve to feel love for your body. You deserve the right to minimize the negative strain that societal expectations add. You already likely feel physically terrible if you are sick. Or even if you're not sick but wish you looked better. Claim mental control and refuse to hate your body. I know that sounds silly, but it seems everyone always has something negative to think/say about their appearance. I have been overweight, underweight, and many inbetween. There has always been 'something' negative I could feel. So finally, I said 'enough is enough' and have made a sincere effort to love how my body is. It could be healthier, it could look healthier, but it's my body. It's what I have. And the less I love it, the more miserable I will feel in it.

    I sometimes joke about wanting someone else's intestines, ovaries, boobs, whatever--I have even said I was learning to knit so I could knit myself a new gastrointestinal system. But, in reality, this is my body. If I want it to work with me and feel better, I need to start in my head and loving my body for what it is. I will constantly try to improve it and make it function/look better. Of course I do not 'love' the pain my body puts me through. But I need to love my body no matter how/where/what it is--otherwise I would never be happy.  I can't make appreciation/love for my body conditional, because it will never be 'perfect'. So please, take a look at the inside and outside of your body. Make a decision now to love it (if you don't already). Because otherwise, you may never be satisfied, and you are adding an unnecessary burden to the ones you may already bear.



Sunday, June 17, 2012

How to Take Control

Last post was about how taking control in stressful situations can help one deal with chronic illness. Hopefully, I've managed to convey some key points: (1) illness can reduce your feeling of control over life, (2) it's important to regain a feeling of control to protect against depression and emotional weakening of the immune system (learning helplessness from lack of control is a key ingredient for depression), and (3), it's possible to regain that feeling of control by taking small steps in your life.

So, today, I'm going to give some ideas on getting that control back. I mentioned diet as an example last post, but today is going to focus more on examples than anything else.


  1. As said before, by exerting control over what you do/do not eat (in accordance with dietary recommendations for your disease), you are asserting control in your food intake. It's easy to see it as 'I can't eat that'--but that's not what it's about. Truly, I could walk to the bakery right now and get a croissant. I miss them incredibly. Yes, I would feel sick afterwards, but I could still eat it. But I am choosing not to. Look at your diet as a choice. Actively pursue information on diet and understanding what foods have what effect. And make a choice.
  2. Treatments. Often, going to the doctor and being at the whim of his/her prescription pad is a huge blow to a sense of control. It is easy to feel a victim in the situation--you are, after all, at the mercy of what that doctor decides to do. It seems like a powerless situation. Or at least it can feel that way. When giving up room in your budget for medications and surgeries, you may see it as having money taken away. But, in actuality, you are choosing to value your health over other life demands. Like with diet, this is a situation of recognizing choice. Even when under the directive of requiring surgery, it is still a choice. Obviously your condition of health has forced you into that choice, but it doesn't change that you can still ultimately choose. 
    • A good example of this is how I chose to deal with the massive changes endometriosis forced on my life. I kept trying to get through treatments as quickly as possible and not give myself time to actually make significant and time consuming changes/stops in my life. This characterized my first couple of years trying to cope with this disease (after it took a turn for aggressive in 2009). When I finally decided to completely put school and work on hold for 6 months, and sought out a highly qualified doctor, my disease finally resolved enough to allow me to resume a normal life. I had many ways to undergo medical treatment for this disease. My earlier choices did not go well--my later ones did. I don't look at my earlier years as being an 'unfortunate victim of poor circumstance and unqualified doctors'; I look at it as me not allocating the proper attention/time off. And that gives me a much greater feeling of control and power than a victim in the waiting room. 
  3. Homeopathy. Home treatments/remedies/rituals are amazing for any kind of suffering I can think of. This is medicine focused on balance of the body rather than resolving a specific illness. Thus, it has the potential of making you healthy all over with fewer negative side effects (thought it can also take longer). However, for me, it's been amazing. For example, lately I've been using eucalyptus to help treat my asthma and allergies--it helped resolve some of my congestion better than any prescription I have ever taken. For endometriosis, things like fish oil, red raspberry leaf tea, and yoga/deep breathing can help immensely. The availability and easiness of the internet provides a wealth of information for pretty much any home remedies for any ills. That also means there is a lot of unfounded and possibly dangerous 'home remedies' peddled too. The key is actively searching for what will help you and make your illness more manageable. Yes, again, it's about taking control of the situation and making educated decisions about what you put into your body. The plus sides of this is these are not prescribed by doctors, meaning it's pretty much self administered. You are in the drivers seat. This also leaves room for danger though--please educate yourself on the risks of home remedies and make sure to carefully evaluate each treatment. Consider seeing a licensed homeopath for a couple appointments, so he/she can guide you in your choices. 
  4. Move your Body: chronic pain is a huge detriment to a feeling of self control. When it hurts to move, it restricts your mobility and the pain and even infringe on clear thought. Feeling unable to control your own body is frustrating. It's easy to see that chronic pain patients are around 5 times as likely to experience depression. But as chronic pain is a source for learned helplessness/depression, it's also a clue for a good place to exert some control. There are times when even a sick person can do something. On good days I can bike around 30 miles. on bad days, I take my dog on a short walk. I do yoga, leg lifts, arm curls--anything I can get my body to do, I make it do it. Why? Because it's a way for me to assert that I am ultimately in control of my body. I cannot stop it from hurting me sometimes, and while motion does help prevent scar tissue formation, it is not 100% effective. But refusing to let your body completely force you into motionless bed rest can help fend off feelings of victimization. It's about focusing on what you can do--not what you can't. 
 I hope you have found something helpful in these tips. They're not all inclusive, and I am sure there are many other ways to 'take the driver's seat' in your illness. Look at this post as a primer. Recognize spots in your life where you can take control.

Thank you for reading! Feel free to add any examples or email me for questions, bedriddenhead@gmail.com.

Sunday, June 3, 2012

Your Own Control

Hey Readers--it's been a while! Between my job, school, and (gasp!) my re-emerging social life, my blog has been hard to update. I've even been on consecutive birth control, so I will only be bedridden every three months (rather than every two weeks), so I cannot rely on that bed time to force me into making blog time. But I have really missed writing, I've missed my readers, and I've missed making my possibly small difference in the endometriosis community. To this week, I plan on doing two new entries. One on an important chronic illness mentality, one on my own personal update, and one (possibly!) on the Angry Uterus (the sleep post will have to wait--I am currently doing sleep therapy and have no results to post). So please, continue reading, I love your thoughtful comments, messages, and shares of my posts on Facebook. It makes me feel so supported and received, thank you.

Tonight, I need to talk about something that made a tremendous difference in my endometriosis control, and, more significantly, my life. Anyone with a Chronic Illness will remember times in their lives where everything feels it has spun out of control. It's not hard to feel this way. One moment, you're an average Joe or Jill, suddenly you're a periodic invalid in pain and torn from a normal life. You are sucked into a spiral of unpredictability and of things constantly 'happening to you'. You become dependent on doctors for minor relief and are trapped in bed trying to figure out 'why oh why did this happen to me?'.

In psychology, we have a term called 'locus of control'. It's part of a person's self concept--how they perceive themselves as an individual. Locus of control refers to how you perceive events in your life as relative to your control--as external or internal. For example, someone who struggled for years and made valedictorian of their class would likely have an internal locus of control--she sees it a result of her own hard work and not as a hand out from the school. Another example, someone who is constantly gambling all of their income away, rather than investing and saving. He may see it as "everything's just luck anyway, might as well speed up the process". These two examples, the girl and the man, have two different types of loci of control. She has an internal locus. He has an external locus. It's the 'I make my own things happen' vs. "things happen to me" view on life and one's self.

Locus of control is important because it plays a huge roll in depression. Did you see that coming? In actuality, a person with an external locus of control is much, much, much, more likely to fall to depression. Why is that? Because of another concept--that of 'learned helplessness'. When awful things happen to a person over and over, and they have little to no control over such events, people are taught by the situation that they are helpless to prevent bad things from happening to them. Like with chronic illness--it often seems/is the case that countless negative events are flung our way with nothing to stop them/prevent them. And feeling unable to quash bad events can leave a person helpless for a depression onslaught.  If they have an internal locus of control, they may be able to resist that lesson, and may persist in believing they have influence. But, more often than not, it's easy to have an external locus in such situations. It's easy to see those horrible things as happening to you and not having any influence over things.

Now, reading this, it's pretty easy to think "wow, that was depressing. Thanks Ash, for illuminating my circle of doom for me.", but I promise this is not the case. Yes, you can feel that external locus of control. And that learned helplessness. You feel bombarded by horrible illnesses and side-effects, and sideillnessess, and side-side-effects, for no reason whatsoever. I mean, no man/women with chronic illnesses asked for them. I certainly don't remember lining up with my endometriosis bowl and saying "please sir, I want some more". So how can you not feel like a helpless spectator?

But the thing is, you can do things to help redirect that locus of control. Little things you can do, where your attention is focused, small claims for control, can make a huge difference. It's pretty simple concept but it can take a lot of effort and focus. But, hopefully, I can explain how it helped me and it can give some of you ideas.

First off, a good example of my focus on the internal control, is my having a really strict diet. I guess that can be a little counterintuitive--after all, I am restricting my diet in a way that prevents be from having access to many foods I enjoy. I could feel that my body is controlling what I can eat. Worst of all, even though I feel much better without gluten, I am still plagued by worries that it may just be the placebo. However, in reality, it comes down to that it is my ultimate choice of controlling what I eat. Even if it does make my body sick to have certain foods, I could still choose to eat them. And that's what I focus on. It's not about my body keeping me from foods, it's about me protecting my body from those foods.

Even more subtle, are small things. Things that I could very easily see is completely out of my control. For example, when I start cramping up. My first impulse is to think, "my uterus has no reason for doing this, why is this happening, this is so unfair". That's what I first think. But then I think, "I maybe didn't take my birth control on time, maybe I had too much dairy, I should have exercised more this month".

Now, this route of thinking is NOT self blame. That's not productive or fair to oneself. It's not about saying, 'this is all my fault.'. It's about looking what factors of self involvement contribute to the situation. Because it can make you feel more in control of the situation. It can be almost unnoticeable, how much influence focusing on the disease's control over you life has. Even if you don't think you're looking at it that way. It subtlety presents itself as the new master of your life, and it's so gradual, you don't even realize it. But the way it takes over is, completely, 'in the little things'. So look at those little things, and reassign control from the disease, to yourself.

It's not about assigning blame. It's about assigning control. Teach yourself that you are choosing to fight back, you are choosing to tackle this, and you are choosing how to handle it. Trust me--you don't want to fall into that external locus of control. Remind yourself who is in charge. Remind yourself who is trying to overcome that chronic illness. Whether it be endometriosis, asthma, an injury, cancer--whatever it is, you are ultimately the decision maker. Remember that and acknowledge your control. Take control when you can. Because depression can make any disease much worse. Don't give it an edge.                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                          


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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.