Tuesday, December 27, 2011

A Holiday Free from Pain

A big concern for me this Christmas was making it through the season pain free. I did everything that I could to keep it that way--I've completely eliminated gluten from my diet (four months strong), I don't drink alcohol, limit caffeine, limit processed sugars, kept lifting to a minimum... but I've got to say, Christmas (or Kwanza or Chanukah--Chag Urim Sameach!) seems to be the perfect storm for chronic pain. I know Christmas has ended, but this entry can be of use for any holiday (like the up and coming New Year) and should help year round.

Both endometriosis and IBD are affected by what one eats. Big time. I wish it was something as harmless as, "you are what you eat"--what I wouldn't give to just turn into a fluffy donut when I eat sugary, glazed, fat pumped wheat. Endo and IBD are both inflammatory diseases, and a big key in managing pain is preventing inflammatory responses, or 'flairs'. Flair triggers can be anything from large quantities of sugar to something as harmless looking as theater popcorn. And there are two things that make figuring out what does/does not cause each of our unique bodies to flair even more difficult: it's more about how the food was made than what's in the food, and everyone is different.

I've read before that endometriosis is a secondary immune system disease--meaning it's a failing in the immune system that keeps our bodies from properly protecting us from natural functions gone wrong (rather than the immune system actually attacking our bodies). IBD is generally viewed as an autoimmune disease (immune system attacks the body). For those of you who may not know, the immune system is largely directed by signals and chemicals that are both endogenous and exogenous to our bodies. This means both what our bodies naturally produce and what we consume as food affect the actions of our immune systems. ( Maybe think of tiny little soldiers and our body giving orders it writes itself and receives from outside officials.)

This places a large burden on most immune disease sufferers. Our concerns around Christmas time are not our weights, our blood pressures, our 'trim, youthful figure'--with everything we eat, we have to make a conscious decision to avoid possible flair triggers. I can't stop the pain, but I can lessen it. I wish my biggest problem was figuring out how to lose weight I gained over Christmas time. I cannot even keep up a healthy weight because, despite my love affair with cooking, I often avoid eating because I am frightened that something I consume may result in a flair. I've made entire meals where I did not eat a single bite. Not to mention, finding affordable meals that contain none of my flair triggers has become an arduous task.

And no one wishes to be the difficult one around Christmas time. No one wants to be 'that person'--the person people struggle to invite out or over for dinner parties because of their difficult food requirements. Even back in my vegetarian days (I'm now poultry and fish friendly--in my stomach), but even in my time as a full fledged vegetarian, I would occasionally eat meat so as not to insult or inconvenience a dinner host or friendly gesture. But now I don't have to worry about upholding my ideals. I have to worry about constantly fighting disease by watching my diet! I can't afford to be polite!

How does one do this? How can you avoid being the obnoxious, unfeasible dinner guest without jeopardizing your health? Endometriosis is not exactly well known, and I will often say, "I"m sorry, I've got Crohn's" to avoid eating something because people will be less offended (for some inexplicable reason) from that than if I say, "I'm sorry, I've got Endometriosis." I can't answer why others think this way; however, I've found some answers to make things easier for myself. Maybe some of my friends/readers can add some ideas of their own. (These ideas are more for endometriosis than IBD, but I will say that what helps endometriosis (diet wise) often helps IBD)

1. When going out, try to load up on disease friendly foods first: I don't mind not getting to eat at the same time as everyone else (I just try to minimize the obvious as much as possible) but that becomes much more difficult when I'm starved. I'm less likely to crack at a party or outing if I eat some apples & peanut butter, rice, oatmeal, etc. BEFORE I go out. I try to never leave my house on an empty stomach. I feel MUCH better if I eat before I leave. That way, even if the only thing I can munch on is salad, I'll still be okay. I have a better time and I'm more enjoyable to be around.

2. Pack disease friendly snacks: There are times when my body cannot last a whole outing without food. And sometimes, the worst times, there is NOTHING available for me to eat. And starving myself doesn't work too well. My weak immune system is linked to a rubbish endocrine system, and I have trouble maintaining glucose levels in my body (i.e., I'm hypoglycemic). To help make outings easier, I try to always keep a couple gluten free meal bars in my purse. This can bridge the hunger gap.

 4. Do not fall to temptation: Sometimes those brownies, cookies, slices of cake, whatever they are, look soooo good. Ignoring food can be hard, especially for women with endometriosis. Hormones can make you crave sweets, and I crave sweets a lot! Unfortunately, whenever I do cave in, I end up swollen, in pain, and wishing I had not. Try to be strong! If impossible, make sure to at least eat unprocessed sweets and to keep quantities small. Often a great compromise is dark, organic chocolate. It satiates in small amounts and satisfies cravings with lower negative consequences.

5. Organic, organic, organic: Again, this is for food that you do eat and those times you give into temptation. I love sweets, and I love to bake, so completely avoiding sweets around the holidays is impossible. So my rule of thumb is I can only have what I make myself. This is because everything I make is organic. I make my pumpkin pies from pumpkins, my cookies never come from a box, and I have no idea why anyone ever decided crisco could be classified as food (it was originally invented as a candle wax alternative). This way, I know each and every ingredient, can limit what is bad for me, and make sure I do not used processed foods with additives. Many additives act as estrogen agonists and food processing methods can leave my stomach... unhappy. When I eat preservative free, gluten free, sulphite free, etc. free foods--I feel better. Even if I did have more sugar than I should have.

6. Remember, each body is different: finding what is okay for one body and bad for the next is not an easy task. Everyone is different and, because these are immune diseases, there is no 'one cure fits all'. It's all about how your body reacts individually to different things. To find which foods are okay and which are not takes a long long time. And around the holidays, when you're eating a lot of different things, discovering what works and what doesn't becomes even harder. The best thing to do is take is slow and keep a food journal. Every hour mark what was consumed and how you felt. This is the easiest way to pick up patterns from what one eats. But be patient and remember that you may be able to eat things that other patients may not.

7. Try not to stress too much: as important as it is to watch your diet and avoid possible triggers, it's not worth it too lose oneself in the fervor of sticking with a diet. One must proceed slowly when switching to a new food regiment. For example, when I went gluten free, I allowed myself great flexibility that first month and gradually reduced the amount of gluten I consumed for several weeks. This kept eating from being a negative experience and made it a more comfortable transition. Even if the food causes pain, stress causes more pain. Stress is a huge hamper on the immune system (I should know, I study neuropsychology!). So try to enjoy the fun holidays bring and if you're new to a endometriosis or IBD diet, try and take it slow!

8. Be okay with people being mad at you/not liking you: the last bit of advice I can give is sometimes you will have to be okay with offending someone by not eating something. When you have a disease, one greatly affected by your diet, no one else has the right to dictate what you eat. You will at times face sneers, jeers, out right judgement and rudeness, but stay strong. As long as you are courteous and not flamboyant with refusing certain foods from time to time, no one has the right to judge you or frown upon your diet. So when people do, take the high road, ignore them, and just remind yourself that they don't understand. Luckily, most people do tend to understand and will support you through it! (Thank you to all of my friends/family who have prepared special foods on my behalf and not guilting me for my neediness!)

There are specific dietary recommendations I could give this holiday seasons, but truly those are everywhere (i.e. all over the internet). It seems more often that those who graciously advise what to eat/avoid refrain from advising people how to actually go about inconvenient (and often unrealistic) dietary constraints. Someday I will add my own blog entry to that sea of online dietary advice. But, for today, I merely seek to give recommendations on how to make the holidays a little more bearable and make it easier to stick to one's special diet. Good luck!

Please, if you have a moment, let me know how you maintain your special dietary needs. Merry Christmas, Happy Kwanza, and Chag Urim Sameach!

Thursday, December 22, 2011

The Benefits of Biking! (and yoga ;)

Biked to the annual Holi Festival at a local Krishna Temple
I've planned to do this post many times. I've written it up and deleted it, several times. In fact, I even did it yesterday (in a spontaneous burst) which came out a bit gargled and difficult to read... so I'm rehashing it a bit. Mostly for the reason that despite this post not being quite as thoughtful as my normal writing, it is still important. In fact, it's got some bare-bones advice that really has made a difference in my life. So here we go.

When I first wanted to do this post, I wanted to do more research. I stuck to my neuro-roots and I set out to read various articles that supported or opposed the theory that exercise can reduce endometriosis symptoms. I wanted to be my science/argumentative self. But then I realized that the joys and benefits I get out of exercise have their benefits with or without the science proof! I know, scary for a nerd like me. Research is not the important factor here. Instead, I just want to tell my experience and, maybe later, in another post, I'll share some of the research and readings I've done to make me have unquestioning faith in these activities.

First off, if you have endometriosis, know someone with endometriosis, might know someone with endometriosis--listen up! Exercise is a VITAL part of maintaining my health. True, exercise is a vital part of maintaining anyone's health. It makes a life span longer in years with higher quality years. A favorite comic strip of mine shows a patient at a doctor's appointment, showing the major flaw of a common complaint "I don't have time to exercise." The truth is, everyone should try and make time to exercise. The benefits of exercise for health are so multidimensional that there is no way I could cover them in a single blog post. However, one of the great things about exercise, in relation to endometriosis specifically, is that it can be a great therapeutic tool for endometriosis.

Exercise has been a VITAL part of maintaining my pain. Much of the pain that comes from endometriosis is scar tissue and concentrated endometriosis implants secreting inflammatory chemicals. When you exercise and move around, it helps keep that awful nonsense from forming. Well, more accurately, it helps prevent it from aggregating in large clumps. Scar tissue comes from the build up of endometrial cells in places that it really should not grow, causing an inflammatory response. By moving around excessively, one can help prevent that concentration from remaining stagnant and increasing to the larger, endometrial implant size.

My personal favorite forms of exercise are biking and yoga. Cycling moves my legs quite a bit and shifts around my lower pelvic region. This is a desirable goal for me, as the light movements can, over time, break up scar tissue and implants that concentrate there. My most large/painful concentrations of endometrial implants are on/in my uterus ligaments. Often any movement (like walking/lifting) hurts me. However, by forcing lots of rhythmical and steady movement in concentrated time blocks of 20-90 minutes, it forces a lot of motion and shifting in those ligaments and helps keep the pain from getting out of control. Sometimes I have been in tears after cycling regiments, but I try to do at least 20 minutes every day. I want to make it as difficult as possible for endometrial implants to hang out in my abdominal and pelvic cavities. In the long run, my pain is much better when I reliably cycle.

Now for yoga... what an amazing form of exercise! It is impossible for me to express what Vinyasa Yoga has done for my endometriosis pain. I admit I am still in some level of pain every day (some days worst than others). But that pain is better managed and more tolerable when I consistently perform daily yoga routines. Vinyasa Yoga is a very health focused style of yoga. It is my favorite form and someday I hope to be a licensed Yoga instructor for this style of Yoga specifically.  The stretching, breathing, motions, and rhythmical flow of Vinyasa Yoga is amazing for ones health. Check it out, take a class. It's not the Americanized Yoga that has turned Yoga into Pilates. It's good for ones health, lungs, heart, muscles, and... of course... endometriosis!

Concerning Endometriosis, Yoga has much more benefit beyond the exercise/stretching that most exercises provide for inflammatory diseases. It's primary benefit is in the reduction of pain experience. Yoga promotes relaxation and soothing of tension. A lot pain for endometriosis is, to put it simply, from inflamed, agitated, and often tugged muscle tissue tensing up and neurons signaling a consequential pain experience. The soothing nature of the breathing/poses/concentration of yoga help to reduce tension and relax the muscles/organs of the body. I like to think of it as a reset button. Additionally, Yoga helps to manage the actual sensation of pain. It can stabilize the pain signaling coming from the body in relation to endometriosis (helping to regulate pain sensation and reduce spontaneous or over-active signaling) and it can encourage the body to release natural painkillers.

So yes, short entry (and a bit bungled to be truthful), but I just wanted to say: if you have Endometriosis, do Yoga and ride a bike! And if you don't have Endometriosis... do Yoga and ride a bike!

Merry Christmas, Happy Hanuka, Happy Kwanza, happy Winter Solstice...  whatever you celebrate, good will to all and I personally will enjoy celebrating family and the birth of Christ myself! (And I'm particularly grateful for that... I was going to have a surgery this weekend and dodged that bullet! Yey!)

Wednesday, December 21, 2011

Tuesday, December 20, 2011

The Blessings that come from Struggles

This has been a pretty wild week for me, with both good and bad, but until I sort through all the madness of it, I'm going to keep my medical issues to myself for today. For good, I did get to take a break and go sledding! But there was bad too... well, maybe. I want to wait for biopsies and what not before I report anything! More what I want to write about today is something I've been sorting through for months. It's kind of personal, but something I think others and myself gain strength from talking/writing/hearing/reading about. I admit I am a pretty spiritual individual, and your beliefs may differ from mine. But I think that this is universally applicable, no matter your faith.

When my life first started really falling apart, from personal and medical trials, to when I had to drop out of college after already taking a semester off for medical leave, two weeks before finals, after working so hard, that I was in so much pain that I could not move--there was one night that was really, really bad. I could not understand why I had to go through so much pain. I felt like I was a good, caring person, who tried to help others, who wanted to put good into the world, and here I was being massacred by things my body and others had done to me. It was awful. I got in a hot shower, tried to calm down, but just ended up curled up crying for almost an hour as the water fell over me. It was a low point. A low point that I am sure every person who suffers from chronic pain/hurt/illness has hit. I could not see the point of it all.

So I did the only thing left. I prayed. I prayed harder than I've ever prayed before. And it wasn't the kind, spiritual prayer of a pious follower of God. It was angry. It was demanding. I demanded to know why God was doing this to me. Why He wasn't helping me, why I hurt so bad I wished I had never been born--if He loved me, loved everyone, why did He make some suffer and others not? It's easy to say that God puts us through struggles when our lives are normal. It's quite another thing that when you lose everything you've worked for and then some, when you're in pain every day for months at a time, or you feel jerked around--it's harder to believe that. And when I prayed in that shower, I did not believe that. I felt like I had been wronged and demanded to know why.

When you have a disease or something go wrong in your life, you need to find a sense of reason and balance in the world. The cause and effect, the meaning of life. Maybe I'm wrong, but I think that this is true for religious and non-religious people alike. Because when you lose that sense that there is some reason for why you are going through what you are going through, your whole life can become meaningless suffering.

A few weeks ago, I read some pretty amazing thoughts and comments from women that suffer from endometriosis of many different faiths. From Buddhist to Pagan to Christian to Atheist. What they wrote was inspirational. They all argued on behalf of faith for strength because it is easy to otherwise feel lost with this disease. That having faith in something helps. Whether that is people, God, a great balance, a great deity, many deities, etc... is, in some ways, irrelevant. The key is faith.

And being sick definitely tests your faith. That night, as I prayed, I honestly felt betrayed and foolish. I was so angry. I probably did not deserve any answers. But I got some. Strong, hammering, shut-up-and-listen answers. I can't share all of them because, let's face it, prayers are pretty personal things. But there is something that I definitely can, and should, share.

My suffering is not meaningless. It is difficult, frustrating, and sometimes unbearable, but it's not meaningless. We can't always do the things we are meant to without being put through certain trials. We're born rough rocks and that suffering polishes us into gems. I certainly have more polishing left to be done, and while I do not look forward to that, I can say that my trials have made me more patient, more empathetic, more loving, more kind, more desiring to help others, stronger, and better than I could ever be without them. In some ways they make me worse but overall I am a better person from my suffering. I am being prepared for tasks that I would be unable to do otherwise.

I am grateful for my struggles. I am grateful that I am a strong enough person to cope. I'll admit sometimes I'm miserable, depressed, angry, whatever. I'm sure these are feelings everyone goes through at low points in their lives. But guess what? I'm alive, life is beautiful, and God helps me more than I understood before. So many of the people who have helped me with my illnesses have done so out of love for me and a desire to follow their faiths. I am so blessed and have learned how much some of the people in my life love me because of how they have helped me through these tough times. I've lost some friends but I've made some new ones. And even though they don't always understand what I'm going through, I'm not sure what I would without the love of my family.

It's easy to fall into the trap of looking at blessings as a more-or-less-than-others thing. I personally do not endorse that view. I don't think God intended me to determine my welfare by looking at my life compared to others. Our relative view of the world and its population is not very all knowing/all encompassing. We can never fully understand what another's life is like, which consequently makes us poor judges. Instead, I try to focus on everything good in my life and see them as blessings. No comparisons. And I've got to admit, even though I would have loved to have my life without the hiccups, some pretty amazing blessings have come from all of this. And seeing how some of my 'endo-sisters' are some of the kindest most caring women I know, I've got to believe some amazing blessings have come to them too.

You might be religious or not, you may think I'm foolish or idealistic to think this way, but I really believe what I've wrote. I feel blessed not only because of all the wonderful things that are right with my life, but I really have been able to do good things because of lessons I've learned from my suffering. I've helped people and done good and put good in the world. I'm not perfect, I have much left to learned, but I've certainly learned a lot from all of this and I'm grateful. The lessons are hard, but worth learning (I hope).

Tuesday, December 13, 2011

Those who talk

I know I said I would do a part three post on Holly Hill's comments about endometriosis, and I fully intend to do this. I did not tell a lie! However, before I do that post, I wanted to do this post. Mostly because I think something that is more important than a 'prominent figure' spreading biased, negative information about endometriosis, are those real celebrities spreading truth, hope, and awareness. Women who are in places of focus/prominence and are willing to be open about their struggles with endometriosis.

There are a lot of negative stigmas about being unhealthy in modern society. I believe it is because it makes people nervous, when someone they know gets sick through no fault of their own. It makes them think, "could this happen to me?" which makes them uncomfortable. So instead they negatively label the sick person, to distance themselves from that possibility. Whether it's conscious or unconscious, they blame that person in some way. They let something go, they contracted it, they lived unhealthily. Doing some research today, I found some pretty bogus myths about endometriosis. Things like it being sexually contracted (like an STD) or caused by an infection that the woman let go. Here are the facts: endometriosis is caused by a combination of hereditary and environmental factors, both known and unknown, and there is nothing a woman can do to prevent coming down with it. There are medical and homeopathic options to help manage the disease, but she is NOT responsible for causing it.

Because of these stigmas and myths, or possibly adding to these stigmas/myths, many women with endometriosis do not feel comfortable publicly acknowledging the disease. They fear negative consequences. They do not want to be labeled sick. 10% of women are thought to have endometriosis--it is the leading cause of infertility and numbers are increasing. However, you don't hear of many prominent women having it, do you? Perhaps it's because it's harder for women with endometriosis to rise to prominence--it's difficult to be active in social/work spheres when you feel unbearable pain at least a third of the time. But I believe there are many women with endometriosis with celebrity status. We just don't know it.

In 2009, Padma Lakshmi co-found the Endometriosis Foundation of America. This famous, well accomplished, beautiful woman was diagnosed with endometriosis and made it her mission to help other women succeed with diagnosing and treating the disease early. She is helping raise awareness and funds for this disease, helping women receive information and treatment for their disease. Of course there are many others involved with this foundation besides this famous model, but her celebrity status helps bring much needed attention to the disease. She has invited other famous individuals on her mission to educate (such as Whoopi Goldberg, who was diagnosed and treated early in life) and she and other women are doing much to teach about this disease. (Check out her website here)

Why aren't there more women like Padma? Lance Armstrong turned his battle against prostate cancer into one of the most successful cancer awareness/fundraising companies ever. Everyone is familiar with the name Livestrong. Almost everyone is familiar with cancer, diabetes, hepatitis, heart disease, asthma--why are so many unaware about endometriosis? I once began to explain my disease to a pre-med friend of mine, and he interjected, "We studied endometriosis in one of my courses. My professor said it was like living with cancer. He made it sound awful." It was a relief not to have to explain myself (I needed help moving because I was flairing and could not lift because of pain and cysts), but more importantly, it was awesome to hear a male friend both aware and telling me a male professor was likening endometriosis to cancer. Because although usually explaining endometriosis as the 'hormonal cousin of cancer' is an easy explanation for many of my friends, sometimes I get sarcastic smirks. Or admonitions of being dramatic. Though after being on a chemo-class drug, suffering many cysts and a big fibroid tumor, having multiple surgeries to excise migrating tissue--I don't feel dramatic. Yes, I don't have to worry about dying tomorrow, and I am grateful for that, but I am scared for every surgery, been on dangerous treatments, and I've had my life on pause for almost two years because of this disease. I've had to watch all my friends graduate college while I stay home in bed. I've wasted hundreds and hundreds of dollars on classes I couldn't finish. And I need to learn how to live with this disease--I will never cure it. I will never be completely healthy. In that way, yes, I feel like endometriosis has taken my life away.

And I know there are many other women who feel like that. So why is it hard to be public and fight for a better life? There are strong women who do fight. Women like Karen Duffy; TV personality and MTV VJ, Karen Duffy teamed up with the National Women's Health Resource Center to make public service announcements (after she was diagnosed with endometriosis in 1998). Duffy's biggest aim is to educate women on how to differentiate from typical period pain and the intolerable pain of endometriosis cramps. One of the biggest hurdles in women getting the treatment they need is the dismissing of endometriosis pain as 'normal cramps'. Affected women, their friends, their doctors--they are all guilty of doing this. Early detection of endometriosis is crucial for preventing further development of the disease, and the current median delay in diagnosis of endometriosis (meaning time from development of the disease to medical diagnosis) is 9 years. NINE YEARS. Duffy is making an invaluable contribution by trying to educate women and decrease this median. But to be honest, I don't think it's enough.

She's only one person. One actress. She does try to help, and I'm not trying to take anything away from her. I think any work she can contribute is great. But I wish more women with prominent connections would speak out on behalf of endometriosis. Or even prominent figures with spouses/loved ones with endometriosis. But it's not happening, and probably because of negative stigmas against poor health. I think it's odd that celebrities are so willing to share the most intimate details of their life, but not about their health. Especially when it could benefit others.

There are other women with some prominence that have announced they suffer from endometriosis but have not made contributions to raising awareness/funds, other than by drawing attention with their diagnosis. Women like Julianne Hough and Lacey Schwimmer from Dancing with the Stars,. That they admit it helps, but maybe they could help more. I've heard rumors that Dolly Parton had it, but this has not been confirmed. Think what she could do for the endo community!

I know they are only human, and it's awful enough that they're suffering, I'm not trying to criticize. I'm trying to figure out what I can do to help change the current situation. For one, I'm pretty public about my endometriosis and how it affects my life. Not in a negative way (I hope!) but in a way to raise awareness. I think it's when everyday common women become open about it, it makes it easier for everyone. Think about it, 20 years ago (and beyond) women did not talk about this really. When Marilyn Monroe suffered, she developed drug dependency (for relief) and it ruined her marriage. She could do nothing for herself or for others. It was something to be suffered in silence. That has changed so very much. And it is continuing to change. And I am proud of anything I can contribute to that change. No matter how small. It's something I am constantly working on and I hope someday I can make a difference.

Being sick is not something to be embarrassed about. It helps me tremendously to be open about it, and I've found that if I am brave enough to talk about it, other women in my company come forward too. Maybe if more celebrities come forward, we can get some much needed public awareness about this disease. Celebrities don't do the research, they aren't the doctors who treat us or the researchers who test and develop new medications. But they have more power than the average person to raise awareness and funds for this research. They are no more important than the average endometriosis sufferer, but they can bring help that the average one cannot.

So here is my challenge: Teach one person a week about endometriosis. A daughter, a sister, a cousin, a friend, a teacher, a coworker--teach and spread education. You never know who you may help. You could help a woman avoid 9 years of suffering. You could provide much needed education to a friend whose sister is suffering. It could be a friend of a friend of a friend :). That's my new goal. Who knows what change it may effect or who's ears it may reach.

Tuesday, December 6, 2011

So now what? Post Holly Endo fiasco

So yesterday I did a post summarizing the past week's events concerning a certain Holly woman and some thoughtless comments about endometriosis. Tonight I wanted to follow up with what action could be taken now, what some people have done, and what I personally am doing.

The topic covering that some pretty thoughtless comments about endometriosis sufferers and their quote, "sexually deprived spouses," has been pretty much exhausted. We know what was said. And as evidence thus far shows, Holly does not plan on retracting her comment. I was about to write that she hasn't shown any regret, but I went to check her Facebook page to see some of the latest things she had to say. I was a bit surprised. This is what I found:

Holly Hill:

"Why should being with someone for the rest of your life be about crossing your legs and controlling urges? There's times in people's lives when they don't want to go into the bedroom, like if a lady has a baby or if she has endometriosis or if a man has a particularly stressful job, so if your partner is not 'in the mood' why on earth shouldn't the other person be able to still engage in those types of behaviours? (Holly Hill, Nova 96.9, 30.11.11)
The above quote generated so many vicious verbal assaults the world was dumbfounded. I lashed back once (I’m human). I believe women are their own worst enemies. Prove me wrong. One apology from me would require many from you, so let's replace the bad with the good instead. From now on, for every insightful tip posted here on how to cope with either Endo or female bullying, I will donate a dollar from every ebook I sell to these combined causes. Let’s learn to be the best women we can be."
Now, I've got to say that as far as apologies go, this does not seem the most sincere in some respects, but very meaningful in other ways. She's making it clear that she does not personally see fault with what she said, and is not going to retract anything about it. In that way, there seems to be no apology. But her actions support that there may be an inkling of regret. She promises to donate money to endometriosis in some way or form.

This is what Holly is doing from this experience. Despite her continued belief that partners of endometriosis sufferers should not have to 'control their urges' she at least has acknowledged that endometriosis is not the casual problem she made it out to be in her interview. One can only hope this also means she will no longer use endometriosis as a tool for promoting her ideals.

In my opinion, it's not a glorious apology (more of a lack of apology), but I'm grateful for the effort. It shows respect for other women and desire to maintain a polite disagreement, rather than a hostile war (although I'm not sure it's possible). Although I did feel that labeling every women who disagreed with her as 'vicious' was wrong. I saw angry posts, but I saw a lot of civil ones too. Many women showed a lot of class, and it seemed like because of their civility, they were ignored. Who knows? I eventually will post my way of coping with endo, but I need to wait a little while longer for my anger to diffuse. I need to accept that this apology (the small effort already surprising I admit) is as much as we're gonna get. But that's going to take me a little more time.


More important (I believe) than what Holly plans to do, is what women with endometriosis and their loved ones plan to do. This 'dark' chapter of endometriosis awareness/treatment is a prime example of the lack of understanding by the general population. It sort of knocked me in the stomach, to think someone could be callous about endometriosis, and how they could be so blind about a disease they know enough about to name. Meaning, she knew endometriosis affected sex lives, without having any idea of why, how, and how people cope. To me, this said that people who knew the name were not getting adequate education about what the disease entailed. It was a wake up call. (However, let me make this clear--this does NOT make Holly responsible for my actions. They are ultimately up to me and my anger over her comments motivated me, not her comments. I tried to find the comment she made about her actions leading to the cure of endometriosis, but it seems she deleted it. At least she realized it was bang out of order) Correction: She did not take the comment down, or at least she might have only hidden it. Here it is: Holly Hill: "These pages are going to be the testimony that gets endometriosis cured..."

I love how many women with endometriosis have used this as an opportunity to educate others about the disease. It's a shocking enough occurrence to grab people's attention, and then you can lead into about what endometriosis is REALLY about. It gave me conversational opportunity with at least three people who, prior to this, knew little about the disease. Because although people who really care about these diseases or me will read this blog, there are many more who won't. So having another opportunity to educate was great. Additionally, there have been many women on Facebook who have encouraged others to use this as an educational opportunity. I saw more "fight like a girl" slogans than I can ever remember, and saw a lot of Facebook status's focused on educating about endo! It was amazing! Women (and men) are rallying together, stoked by anger, but channeling it into positive action. It has been an inspirational week for me.

Not only has this been an educational opportunity, but it's been an excellent catalyst for mutual support. Women have been sharing their backgrounds, sharing their stories, sharing their struggles, and other women rushed in with words of encouragement. I've made at least ten new endometriosis friends and I have felt less alone in this past week than I have felt in a long time. Women have been making it clear, for each other, that we are not suffering alone and that we are completely worthy of loving/supportive partners BECAUSE of our disease. Many women with endometriosis have at one time (at least) felt inadequate for a fulfilling romantic relationship because of this disease. We know that's not true, but sometimes we fear it is. But the truth is that the struggle of endometriosis can make you into a strong, wonderful person; one who is worthy of quality relationships because of the pain. And this week, and the stories it's generated, has been an excellent reminder of that.
For me personally, these events have motivated me to not only be more open about my struggles, but to look for ways to help everyone with this disease. One way I've gone about this is blogging, hopefully putting words to feelings and frustrations that many people are feeling over this. More meaningful, I think, is I'm using some personal skills to fund research. I am an excellent baker and am good at making both traditional and gluten free baked goods! So, I am opening orders with friends for baked goods, and donating all the proceeds to endometriosis research. This frustration creates energy for me, and I want to channel that energy into something that can make a difference.

I've seen other women using this as an opportunity to raise funds for endometriosis. One woman has an entire company/line of products dedicated to endometriosis awareness. Look at some of their endometriosis pictures here: http://www.facebook.com/OSLpics. Not only do the products educate about endometriosis, but her proceeds are dedicated towards endometriosis awareness/research. Other women are donating personal funds as a way to combat the ignorance/hate they feel Holy has spread.

And now, as a full day has passed since I read Holly's statement about what she said, I can share my calm, collected thoughts. Holly has not issued an apology. In my opinion, she is trying to prevent what she said from negatively affecting book sales. However, there is no apology in what she said and she has turned this around into her 'being the victim'. Unfortunately, I believe she honestly feels victimized in this situation and that she said nothing deserving of backlash. She's not sorry for what she said and probably never will be.

But you know what? I don't care. I'm moving on. I'm going to dedicate more of my time to stopping ignorance like this, so that if anything like this ever happens again, there will be no excuse for it (not that there is--but I can't say that before this, I've done enough to prevent things like this being said). I want people besides those immediately affected by endometriosis to care when awful things like this are said. And the only way that is going to happen, is if those afflicted work to spread education, hope, and awareness.

Please, post any thoughts or feelings you have on this. What are you doing to spread awareness? Do you have plans for raising funds? What about those without the disease, have anything your friends or family done helped to influence your views on it? Let's share this, motivate each other, and make a difference!
Here are links to some more endo blogs related to this:

http://endometriosismylifewithyou.blogspot.com/
http://coocamungas.blogspot.com/2011/12/bright-and-vibrant.html?spref=fb

Monday, December 5, 2011

Holly Hill, Endometriosis, and Stupidity

Although part of me hates myself for even doing this post, I think it's pertinent I do. Because this story is a prime example of the ignorance and bigotry that surrounds endometriosis. It has become a sort of rallying point for endo-sufferers and is such a blatant showing of ignorance that it's even gotten people who knew nothing about endometriosis prior upset!

So here is my summary of the situation, notice I am trying to be factual and level headed. Please do not mistake this for agreement or support for her. Holly Hill is a self-proclaimed author/activist for open relationships. She believes that males are biologically programed for cheating and are forced into secrecy by partners who refuse to be open-minded about infidelity. She instead preaches 'negotiated infidelity', meaning sex with multiple partners is okay, so long as you and your partner lay out the ground rules. She believes the idea of one-man-one-woman for a lifetimes marriage is dead.

She draws her unique ideas from her personal experiences. She used to be a mistress of a married man who convinced her to quit her day-job and live off his wealth. But then he dumped her and returned to his wife. Desperate for money, and likely depressed, Holly advertised herself as a 'sugar baby', offering companionship, cooking and sex to a man in return for a $1,000 per week salary. She details her experience with 5 following partners in a book she published and sold in Australia. I won't name the book here because I refuse to advertise for this woman.

Well, of course this contriversial view that she is so loud about gets lots of attention. She's been on talk shows, Nat. Geographic, etc., but more because of how she spreads her ideas. Anyone who's studied psychology should know that this woman's views are anything but new. Evolutionary psychologists have battled to explain why partners cheat in monogamous relationships for decades. Probably why they battled so hard is because the evolutionary psychology module is inadequate to explain human behaviors like infidelity. (Let's just say, that the primary evolutionary success of human's is their neuroplasticity, meaning human cognition adapts well to current situations. It's more the diminishing negative consequences that are responsible for encouraging infidelity, not genetic predispositions. In fact, the human species has been evolving for thousands of years, and only in the past few hundred have offspring stood equal chances of survival and continued proliferation whether or not their parents were providing together. Meaning, that if a man did not stick around to protect for and provide for his offspring, they stood little chance of surviving and further proliferating. But I suppose that is getting more science-y than I need to.) My basic point is that Ms. Hill enjoys using science to support her controversial views, yet just like those before her who have spouted such ideals, her views do not have adequate scientific support.

Ah, but I digress! How about for my next entry I go further into why mutual fidelity is necessary for successful relationships? In the mean time, let me point you to an interesting article I found: http://www.psychologytoday.com/blog/building-great-marriages/201107/is-monogamy-dead. It just explains the flaws in reasoning that infidelity will somehow strengthen a marriage.

In the meantime... So this woman has rather controversial views, as I've shown. Now, to be honest, I would not care two cents for this woman's views before Nov. 30th. I'll be honest, I personally think her views are disgusting, and an insult to marriage. But the beautiful thing about free agency is that people are allowed to do and think as they please. As far as I am concerned, what people do in their own lives are between them and those concerned. I also believe they will face consequences from the big-man-upstairs, but that is none of my concern.

However, miss Holly Hill crossed the line from controversial to discriminatory. She did a little radio spot on an Australian radio-show, talking about how allowing your spouse to cheat on you shows them that you love them. Yep. Not only did she say that, she said that when women 'cross their legs' for an extended period of time, like from pregnancy or ENDOMETRIOSIS, they should be willing to let their men find sexual satisfaction elsewhere. Yep, if you don't believe me, here's the link: http://www.novafm.com.au/audio_is-infidelity-the-secret-to-a-successful-marriage_103788#HeadingReply. Make sure to have a thick skin when you listen, man or woman.

But Holly doesn't stop there. she moves on to post on her blog that 'sexually deprived spouses' are suffering. That being unwilling to offer them sexual options is unloving. In a response to one outraged endo-sufferer, she wrote, "If you can't f@ck your husband, of course he should be able to go elsewhere for sex. You are not his wife, you are his jailer and one who tortures him as well. Why should you both suffer such a dreadful disease?"

Yep. Not much I need to explain on why that was awful. Women from the endometriosis community are outraged, furious, understandably so. Many rallied against her, demanding an apology or just harassing her to no end out of fury. Some have left messages of hate and bitterness on her facebook page. Some have written angry letters. Some are simply just demanding some sort of apology or trying to educate her on her lack of understanding of endometriosis.

Clearly, a lot is missing from Holly's understanding of endometriosis if she thinks it is a simple matter of not being in the mood for sex. For many women that suffer from active endometriosis, sex is a horrible complication of the disease. Because endometriosis inflames and adheres internal organs, sexual penetration and thrusting (that's right, I used bedroom words!) can be uncomfortable to unbearably painful, depending on the locations and extensiveness of the endometrial implants. To make matters worse, if the woman does not feel comfortable discussing the pain with her partner, and continues to have sex despite the pain, sexual interaction and all thought about it can become emotionally distressing and actually trigger pain in reproductive organs (just the thought). Often women fear that the pain and adverseness to sex will negatively impact their romantic relationships. Sometimes they do. It takes a man who is understanding and empathetic to the disease (and all it entails) to maintain a healthy, happy, and fulfilled romantic relationship. Sadly, not everyone is sympathetic, and I have heard sad tales of ended marriages because of inability to compromise with this disease. It is certainly not a simple manner of 'crossing your legs'.

Endometriosis certainly does affect my relationships. There have been weeks at a time where I was unable to do any social activities because of the pain that was wreaking havoc over my body. Imagine trying to go on a date when it feels like your insides have a knife stuck in them! I know it is extremely difficult for my boyfriend, who is a wonderful, understanding man, to see me in horrible pain and be unable to do a thing about it. There was once a time where he was especially angry when I was feeling ill, and I thought it was because he was frustrated with me. But upon speaking, it was revealed that he could not get over how angry he was that no one was able to medically help me. That I was still suffering after countless doctors appointments. If he does feel any anger towards me over this, he has never even hinted at such a situation. I have even once told him that I would understand if he wanted to leave and date someone who wasn't ill. I love him very much and just wanted him to be happy. Like countless other women with endometriosis, I did not want to force my beloved significant other to suffer with me. Many women with endometriosis have found themselves backed into this situation. Where, full aware of the burdens this disease carries, we are willing to protect others from suffering with us, even at the expense of our own happiness. However, he, like many other endo-man-supporters said that he was in for the good and bad times. That he was much to attached to me to give up that easily.

Women who suffer from endometriosis are some of the strongest women I know. They know what real pain and suffering is. They know what it is like to suffer from a disease with no cure and little relief. To suffer often alone and without understanding from others. This has made them strong and empathetic people. Unfortunately, they often do not receive the empathy they so willingly dispense on others. I often have had friends, family, coworkers, doctors, and other medical personnel treat my pain like a mental choice. That if I just toughed it out, everything would be better. People do not often realize that I am toughing it out every day I get out of bed. This lack of empathy and understanding is hurtful but widespread. We must do a lot to educate our friends and loved ones about the true nature of this disease. It's an uphill battle but we do it out of the hope that as more and more women are diagnosed, they'll receive understanding rather than bigotry.

So, when a woman like Holly Hill says something like she did, there is certainly going to be a backlash. A violent one too, may I add. We struggle enough, we don't need people like her spreading untrue, biased, and completely uncalled for information too. Maybe for her an open relationship is fun, but for the majority of people, infidelity is one of the most hurtful things that can ever happen to them. As someone who still believes in the sanctity of marriage, and that faithfulness to one another is vital for a successful relationship, I see NO justification for such behavior, especially if someone suffers from an incurable disease. In my eyes, spreading of such ideas (that infidelity is warranted by a disease) is discrimination and hate speech. What she said was plain awful, and while I don't agree with verbally assaulting her, I certainly understand why women are angry and hurt and reacting the way they have.

And as this post is probably long, unorganized, and not thought out as it is, I'm going to stop for tonight and work on my book! I'll work tomorrow, but I'll close by saying that this 'dark' episode of endometriosis awareness is a great opportunity for endometriosis women to rally together and further a better understanding of the disease. This is a prime example of ignorance about the disease and public one at that. I hope I can turn this into something positive, I'm sure there are other women who think the same!

Sunday, December 4, 2011

Getting back UP


(above is me bedridden for a while and sad from being sick... with some slight graphic alterations ha ha)


It's been a really long time since my last entry. I've got reasons, but they're not very good. See, I've been told that I have a pattern with my blog posts. That they fluctuate from positive and hopeful to distraught and a little hopeless. I realized that this must be a reflection of my own personal moods and energies, so I resolved that I would no longer fall into that pattern. That I would keep the hopeful, positive me around forever. So, when I started feeling I could not write a positive blog post one day... that led me to delay ever finishing my draft. And this bad mood went on so long, that when the positive one swung back, I had forgotten my blog.

Luckily, I've been thinking all week(s) I really must start blogging again. But I kept avoiding it still. See, believe it or not I have been working on a novel since the tender age of twelve! (ha, one would think I would be a slightly better writer by now!). Well, I've been working on this novel a lot lately and am trying to prepare it enough to be sent to publishing agents by the end of next year. So, whenever I felt enough motivation to work on my blog, I'd berate myself instead, thinking things like, "Ah, so you feel up to blogging but you haven't touched your book today? What happened to writer's block missy!" Unfortunately, this line of thought carried on for quite a while...

Well, about 15 minutes ago, a lovely new endo-sister facebook friend of mine, well, she commended me on my thoughts and blog and it honestly made my day. Friends are bound to complement you once in a while (they've got to keep you around some how) but when a stranger likes what you've done, you know they have to mean it. So, as is my rule, I won't use your name endo-sister, but thank you again for your kind words!


Now, what I want to blog about tonight, is largely responsible for my long swing of a negative mood. That being, I've sacrificed a lot of my life this year to do some pretty radical treatments... and they didn't work :(.

I am in my final month of the chemo-classified drug Lupron (Hormonal Chemo... good times). I got my final injection on October 26th (drove 14 hours to get it too--long story), and exams and ultrasounds prior to it showed that it did not work. It is supposed to chemically force my ovaries into menopause (while wreaking havoc on my body). This is to stop estrogen production and stop your reproductive system from building up endometrium. Unfortunately... apparently my body really, really likes to build those cells (endometrium). My ultrasound showed an endometrium layer in my uterus one centimeter thick. Granted, that's half as thick as it normally is, but still, that's while I've been 'menopausal' for four months.

On top of that, I had a hormonal IUD placed in my uterus. This was to stop endometrium production locally, in my abdominal area. Not only did it not work, but my uterus was very ticked about it being there. I had constant sharp, jabbing pains. Eventually, it had to be removed. But the joy doesn't stop there. When the doctor took it out (completely correctly, he did nothing wrong), it tore my uterus on the exit. Apparently the chemicals can thin my uterus down to paper, even if they can't stop it from making endometrium. Well, within 24 hours I start hemorrhaging. At first, to be honest, I thought I started a period... I quickly realized that I was quite literally bleeding. Luckily I was home with my parents at this time. My mother had me call the on-call doctor (my doctor luckily) and he told us what to do. He called in prescriptions, told me to keep still, and we got to avoid an ER visit. But honestly, I know other women's experience with these IUDs must be vastly different, because I was not ever warned of that being a possibility!

Now, to top it all off... I must really seem in the whine game now... (darn it, I'm going to owe so many quarters to my bitch and moan jar...!)... I may not have colitis. Yeah, shell shocker there. Well, see, it comes down to several possibilities. And all are equally valid and non-valid--meaning my symptoms are extremely confusing and contradictory. For example, I have all the visible symptoms of colitis or colonic Crohn's (like ulcerations, plaques, blood, BM frequency and bloodiness) but my blood and MRI studies do not support this diagnosis. So where does that leave me? I am either a very special case of Crohn's that is difficult to diagnose, or my endometriosis burrowed through my intestines and is mimicking inflammatory bowel disease symptoms. Goodness, how did I get so lucky?

The problem is... well, the problem is me. My doctors testify that more often than not, if there is a chance for a special case, if there is that odd 1% reaction... I tend to be that case. Nothing really goes with my body the way I want it to. Heck, even after getting my wisdom teeth removed, I was one of the lucky persons who's jaw bone migrated over, poking through my gums, exposing the bone and cutting my tongue! Can't sand it down because it harbors my nerve, so it'll just stay and keep cuttin'! Because I'm just special! So when it comes to making diagnoses, which are done using data from averages, it's hard to make a diagnosis on special freaks like me, ha ha ha.

It's taking a while to fully determine what Chronic illnesses I have, how are they interacting, and how can we treat them. I've been on two prednisone tapers this year for IBD flairs, and got pneumonia twice. Prednisone works, but it's dangerous, and should be a last ditch. We've got to find a way to keep my body from flaring up in the first place. How is that done? I'll let you know when I finally do.

Women with endometriosis, they are used to many failures in treatment. The next thing, that thing that's supposed to make it all go away, we'll try it and it fails. We're used to that disappointment, but can never really be used to that disappointment. It's heartbreaking. It's spirit breaking. It feels that I am being constantly pushed to the ground and am struggling to get back up.

But I'm getting back up. I've had three major failures, I'm not quite at the bottom, haven't hit yet, and I'm getting up before I do. I've met with a nationally recognized endometriosis specialist in Ogden, and he is giving me a breakthrough surgery to get rid of all this deep tissue endometriosis that gives me so much daily pain. The stuff that Lupron couldn't break down--Dr. Aarington is going to scrape that tissue out! He's not going for the branches, he's going for the tree!!! and I know that there are chances that this may not work either, but I have to fight this disease as hard as I can. Someday I'll get there. Someday.

At least I'm back up.

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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, struggles, and happiness.