One of the most beautiful things I’ve ever heard…

Once in a while I post things unrelated to the main topic of my blog, simply because they are amazing. Here is one of them.

I’ve been going through a bit of a rough patch recently, which is why I haven’t been posting too much. Music is one of the things that helps me get through those times, and I’m so excited I discovered this band.

I don’t know how reliable Youtube comments are, but I read one comment that explained this song is about Robert Capa and Gerda Taro, two wartime photographers who fell in love and covered the globe together in the 1940’s and 1950’s.  They risked their lives to document different wars across the globe until Taro was killed in a freak accident.  The song is written from Capa’s viewpoint as he dies and goes to heaven, to be reunited with Taro.

Hope you enjoy this song as much as I do!

Beware the Red Herring

One of the reasons I sometimes take a critical tone towards alternative medicine on my blog is not always that I think these approaches have no merit.  But I do think that, too often, people are drawn to and waste their time treatments that are simply “fads.”

When I look back on everything that led up to my losing an ovary, I can’t help but feel my digestive problems are to blame.  I wasn’t sure I wanted to talk about my digestive issues on this blog, but what the heck.  I have issues with IBS and chronic constipation, made worse by the fact that I have a pelvic floor disorder.

I am so used to feeling discomfort in my abdomen that I didn’t rush to the hospital the moment things began to hurt.  In retrospect, that was critical time in which my ovary was being deprived of blood supply, and although the doctors and nurses I talked to didn’t want to come right out and say it, there is a chance I could have kept my ovary had I gone to the hospital sooner.

When I look back, I can see that some of the symptoms I associated with my twisted ovary were actually building for months.  I had this weird feeling in my right side, a feeling that something was where it shouldn’t be, for almost a year.

It’s so infuriating to realize this, because I talked to two gastroenterologists about the feeling that something new was wrong on my right side, that somehow things were getting worse.  I told my most recent doctor– who actually published a book on digestive issues in women– that I felt as though the right side of my abdomen always seemed to be a bit swollen (for lack of a better word). That my right side was always aching a little bit, that it was simply bigger than my left side.

This doctor basically told me not to try too hard to diagnose myself; that I shouldn’t go by how things felt from the outside.  I tried to explain that I wasn’t, but our appointment time was over and she had mentally checked out.

I am so frustrated now, because I wish she could have pointed just out that ovarian cysts can have many of the same symptoms of IBS.  Perhaps she could have said something like “Gee, I have no idea why that area is bothering you, perhaps you should try seeing someone in a different specialty.”

*****

I also wish I’d tried harder to get an answer.  It’s funny because, a few days before the pain really started up in earnest, I knew things were getting worse.  I didn’t have the horrible pain in my right side yet, but the feeling that something was there, that something was stuck, was really getting on my nerves more than usual.  I remember saying to my mom “I have to deal with this problem.  I can’t keep taking no for an answer.  I have to find a new gastroenterologist.”

Almost a year had gone by since I had seen a new doctor.  The last time I saw my doctor, which was almost a year ago now, she had offered to put me on Amitiza, a medication for chronic constipation.  I was reluctant to start a medication without exhausting every other possible option, so we decided that I would try going gluten-free first to see if it helped.

My doctor had said that sometimes it can take a long time for the gluten free diet to help.  She also said that it won’t necessarily work to just reduce gluten; you might have to eliminate it completely to really see an improvement.  So I spent the past year waiting to see if this would help.  At some point over the course of that year, my right ovary began to twist, and I did not aggressively pursue answers for the new pain I was feeling.

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Now, I am sure that a gluten-free diet has helped many people.  But at the same time, gluten-free diets for non-celiac sufferers is not something that has actually been proven to have any scientific merit (as far as I’m aware).

I think it was a mistake for me to have endured so much discomfort, for so long, waiting for something with so little evidence to help me.

When I look back over the years, I can actually see how sometimes, being stoic and just enduring the pain and discomfort has not served me well.  I’m sure certain family members of mine will get a good laugh out of this statement, but I wish I had complained more, not less.

Being stoic is not always good.  And neither is being too open to new ideas.  I had a very real, very diagnosable problem in my abdomen.  But I was content with no answers, for too long, because I was waiting to see if something that is basically a fad was going to help me.

Of course, I don’t mean this in any way to be a criticism of those who are on gluten-free diets.  If it helps you, that’s great.  I might even try it again in the future if my digestive symptoms don’t improve.

But it’s about proportionality.  When I look back, it just doesn’t seem logical; the idea that I could fix extreme discomfort by no longer eating something I had eaten comfortably for most of my life.  I can see why my doctor would have recommended a gluten-free diet for a more subtle condition.  A subtle treatment for a subtle condition.

But there was no proportionality between the persistent, nagging feeling that something was stuck in my abdomen, which bothered me day in and day out, that kept me awake when I tried to fall asleep at night… and gluten.  If gluten-free diets could clear up this kind of discomfort, I’m pretty sure they would be in medical textbooks by now.

So, these were my mistakes.  The first: a lack of proportionality.

The second: being too stoic.  I waited far too long for something with very little scientific credibility to help me, instead of insisting that a doctor understand exactly how miserable I am.

Let’s not be strong all the time, people.  Sometimes, it’s really important to just let yourself complain.

Posts that blew me away

snow streaks

I spent much of this weekend huddled in my house, hiding from winter storm Nemo.  I have to be honest– it was kind of fun.  I secretly enjoyed the driving ban– in a weird way, it was nice to have about 24 hours where I had no choice but to stay home and relax.  Normally I push myself to get out on the weekends and prove to myself that I still have a social life, but this Friday night was different.  No one was doing anything; it was illegal to drive, and nothing was open.  So I took it as a chance to stay in and catch up on blogs I’ve been meaning to read.

I found some really great blogs/posts this weekend.  There are a few in particular that I find myself still thinking about, hours later.  Great writing transforms you; it takes your breath away and makes you forget where you actually are.  To the authors of these posts: thank you.  I really feel like I learned something.

Interestingly, all of the posts I am choosing to link to are part of a series of posts on each blog.  I didn’t want to link to all the posts in the series (thereby spamming their respective authors with a million pingbacks) so I am only linking to one post for each.  I’m sure you guys can figure out the rest :)

Here are the links, in no particular order:

Does Your Journey Seem Long: a series of posts by author Stina Morrison on her experiences with endometriosis.  Her story really resonated with me.  Click here for part one.

Fibro Feist: an ongoing series of posts by my blogging friend Sarah called “What I need you to know.”  I just read her most recent post and it completely blew me away.

While I Wait: A Journey of Recovery: a blog written by Ana Turck, a native Sarajevan who survived the Bosnian War.  I was incredibly moved by her series of posts “They Are Coming.”  By the end of Part 2 I was actually crying (another sign of good writing!)

I hope these stories resonate with you all as much as they did with me.  And again, thank you to the authors of these posts!  Your writing was truly thought-provoking.

Hope everyone had a great weekend (and that anyone else in Nemo’s path had as relaxing a time as I did!).

ruby storm 3The dog was on patrol, as you can see.