Tag Archives: endometriosis

Things I Wish People Understood About Chronic Illness

1.)  Chronic illness does not take the weekends or holidays off.  I have had to spend Easter and New Year’s Eve in bed more than once.  It sucks but there is nothing I can do about it.  Please don’t make me feel any worse about this than I already do.

2.)  I’m not unreliable.  My health is.

3.)  Just because I may not use my crutches or wheelchair on a given day does not make me all better.

4.)  I get the best results when I combine traditional and alternative medicine.  It’s very annoying when people tell me that one is better than the other.  There are pros and cons to every treatment.  When dealing with complex illnesses, you have to pull out all the stops and use everything you’ve got.

5.)  I’m sick to death of unsolicited medical advice.  Please don’t go there.

6.)  It’s possible to be allergic to natural treatments.  Some natural treatments can also make symptoms worse for some people.  I am allergic to calendula (an ingredient commonly found in natural eczema creams), and ginger essential oil makes my nausea worse.  This does not mean I am refusing to use all natural remedies.  This means I know my body.

7.)  I know more about my conditions than some doctors.  That is not half as frustrating as when they pretend they know when they don’t.  If it’s not their specialty, it’s understandable that I know more than they do.  I wish they’d admit they don’t know what they’re doing and send me to somebody who does.

8.)  Losing fantastic doctors to moving and insurance changes can be very stressful and devastating.

9.)  Having multiple chronic illnesses is more common than most people realize.

10.)  Taking medication with significant side effects does not mean I am being cavalier about what I put in my body.  It means that I have carefully decided that the side effects are nothing compared to the disease itself.

11.)  There are times when I have to clear my social calendar and focus on taking care of myself for days of even weeks at a time.  Complaining about this will not change it.  I promise i hate this more than anyone else does.

12.)  Treatment is rarely one-size-fits-all.

13.)  Getting an accurate diagnosis can take months or years for some people.  I started having symptoms of endometriosis in 2006 and was not diagnosed until 2009.  Thankfully my fibromyalgia and IBS were diagnosed almost immediately, but not everyone is that lucky.  I’m having joint pain and dislocations of unknown origin, and I have no idea how long it will take to get that diagnosed.

14.)  My definition of an “improved quality of life” is not the same as a healthy person’s.  To a healthy person, it means being able to do as much as you want.  To me it means being able to do some of what I want, and getting to a place where I am content with that.  I don’t do physical therapy with the intent of someday running a marathon.  I do it with the intent of hopefully someday having a bit less pain and fatigue when I walk and do everyday tasks.  It’s not pessimism; it’s realism.  I’m a human being, not Superman.

How about you?  What do you wish people understood about live with chronic illness?


The Stigma Against Physical Illness and Traditional Medicine

As I’ve mentioned before, health and I have been having a bumpy ride the past several months. My endometriosis came out of remission last year. Along with that came free gifts of fibromyalgia, irritable bowel syndrome, and asthma.

Last fall, I made the difficult decision to do a 6-month stint of Lupron injections, and then I saw firsthand just how stigmatized physical illness and traditional medicine have become. In the age of natural remedies and anti-doctor sentiment, people who choose traditional treatments are harshly judged and verbally attacked. The rheumatologist who diagnosed my fibro gave me an earful about how I never should have finished the Lupron course, and why did I even left them inject me in the first place? (Dr. F, if you’re reading this and wonder why you’re not my doc anymore, your lovely attitude may have something to do with it! Just saying!)

It’s one thing to have legitimate concern about side effects. Lupron came with plenty of them, and that was part of the reason I put off going on the shots as long as I did. But berating people for making informed decisions about a condition you don’t know crap about is WRONG. If you haven’t felt like you’ve been socked in the stomach or like you’ve been impaled with shards of broken glass, then you have no business telling someone they shouldn’t see a specialist or use narcotic painkillers as needed. (Yes, there are appropriate ways to use narcotic painkillers, and most people don’t lose the judgy pants long enough to find that out either.) If you haven’t been dependent on inhalers to jumpstart your lungs when they’re threatening to take a vacation, you have no business telling someone they shouldn’t put steroids in their body. Yes, that comes with a certain degree of risk, but letting asthma go untreated is much riskier. People don’t understand that choosing health treatments, whether traditional or alternative, is taking a calculated risk. You take a calculated risk every time you get in your car and drive somewhere. You could die in a car crash. That doesn’t erase the benefit to be gained from driving to work or to a social event or wherever.

It isn’t just traditional medicine that’s stigmatized. Illness itself is stigmatized as well. People often say that mental illness is no more shameful than physical illness, but honestly, I get more flak about my physical health issues than my mental health issues. Statements like, “You’re too young to be that sick” or “You must have done something stupid” or “G-d hates you” are signs that our society is not as understanding about physical illness as we’d like to think. The natural remedy fad is partly to blame for this problem, in my humble opinion.

I’m all for natural remedies that are safe and effective. I have a handful of natural remedies that can sometimes reduce or eliminate my need for heavier pain medication. But sometimes the natural stuff just doesn’t cut it, and it’s not always safe. Carbon monoxide is natural. It’s also deadly. It’s also possible to be severely allergic to natural ingredients. For instance, California Baby is a popular organic lotion brand. I have nothing against them, but I can’t use their stuff because it contains a plant called calendula, which is an effective eczema remedy for some people. Well, it turns out I am highly allergic to calendula, which I learned the hard way. So that natural remedy is out of the question for me, and people have had the gall to tell me I’m just being stubborn and I should try the calendula again. (I’m as stubborn as all get-out, no point in denying it, but I most certainly should not try the calendula again. I’m a fan of breathing and not breaking out in hives, thank you very much.)

So what do I want people to take away from all this? I guess I want people to listen more and talk less when it comes to other people’s health issues. (That’s the nice way of saying you all need to shut the frack up.)

Love-Hate Relationship

Sorry I’ve been so incommunicado. Health stuff has been kicking my butt yet again. There is so much I want to say about the stigma of physical illness and traditional medicine, but that will have to wait until I know which end of me is up.

I’ve been doing the “Love/Hate updates” when I want to write but have no idea what to write about. But lately I’ve been thinking about the things that I both love and hate at the same time, so without further ado, here is my List of Things I Both Love And Hate:

1.) My Hair

I love how it’s finally growing back after I lost a bunch of it to a medical treatment for my endometriosis. I hate how indecisive I am about how short I do or don’t want to cut it while the rest of it grows back. I hate how thick and rebellious it is. I could really relate to Merida in “Brave”, let’s put it that way.

2.) The mind-body connection

I love how practicing mindfulness has a positive effect. I hate how emotional stress kills my appetite and makes me want to toss my cookies.

3.) Traditional medicine

I love how my odds of dying of smallpox, scarlet fever, whooping cough, polio, etc, is slim to none. I love how there are more treatment options available than ever before. I hate it when doctors don’t admit they don’t know something. I also hate it when people who don’t know anything get paranoid about side effects when they don’t understand that sometimes diseases themselves are worse than side effects.

4.) Alternative medicine

I love how some alternative treatments can reduce my use of pain meds and other traditional treatments. I really love herbal tea. It’s my new coffee, since I can’t have coffee anymore. I hate how under-researched alternative medicine is. I hate that many doctors shun it simply because they don’t understand it and get all hung up on “non-FDA approved” and whatnot.

5.) Asthma meds

I love how they help me breathe. Breathing is a really really good thing. You don’t fully appreciate it until your lungs cop an attitude. I hate how every inhaler out there tastes like burnt rubber. We’ve created vaccines, invented lightbulbs, put people on the moon, and yet we still haven’t invented an inhaler that doesn’t taste like burnt rubber. Go figure!

Okay, that’s about all I have energy for today. Hope you’re all having a wonderful Thursday!

String Cheese Rant

Right now I’m going dairy-free because my intestines have decided that if it comes out of something that says moo, they don’t like it.  (Digestive issues are pretty common with endometriosis, unfortunately.)I guess you could say my intestines are anti-bovine.  I was doing okay with this no-dairy business until I realized something absolutely, completely, totally, utterly horrific.

String cheese is dairy.

As in, it has moo-juice in it.

As in, I. Can’t. Have. It.

My intestines are all, “No string cheese for you!” like that annoying soup Nazi on “Seinfeld.”

This wouldn’t be a problem if I hated string cheese.  But the way I feel about string cheese is the complete opposite of hate.  I’m craving string cheese.  When I say I’m craving string cheese, I mean I want string cheese like Gandhi wanted peace.

Sometimes I write about more profound things.  And sometimes I just really want string cheese. :p

Struggles and the Shattered Myth of Fairness

When I was about eight, my mom took me to see some specialist at some big-shot hospital. (I can’t for the life of me remember what was wrong.) While I was at that hospital, I saw a little boy about my age, but he didn’t look like any of the boys in my class. He didn’t have any hair, and he was sitting in a wheelchair hooked up to a bunch of IV’s. I asked my mom what was wrong with him, and she pulled me aside and told me he had cancer. Up to that point, I thought only old people got cancer. I asked my mom if that little boy was going to die. She didn’t say “no, he’ll be fine.” She said, “Yeah, he might.”

I cried my eyes out on the way home from the hospital. I wasn’t crying because some nurse had just taken a dozen tubes of my blood. I was crying because I had just learned an excruciating life lesson: life is not fair and sometimes shitastic things happen.

I’m going to be honest: life is not being fair to me right now. I have an autoimmune disease called endometriosis, which came out of remission last year. Autoimmune means the disease is not a virus or bacteria. It’s my own cells going wackaloony, like a malfunctioning smoke alarm that won’t shut up even though there’s no fire. When you have a disease that’s made of you, things get complicated in terms of trying to find effective treatments.

My endo is not going away quietly, to say the least. I won’t go into all the details about my symptoms and treatments on here, but I’m tired of hiding my emotions about the whole thing. This has been freakin’ difficult because there is no solid explanation of why shit happens. I don’t know why some people die young, and some people get diseases that don’t kill them but make their lives a living hell. I don’t know why natural remedies aren’t the cure-all that some people claim they are.

Pretty much the only thing I do know with certainty is I didn’t get sick because I’m a failure any more than that boy in the hospital 20ish years ago. I’m not an extraordinarily good or bad person. I’m just a plain old person, and sometimes crap happens to us plain old people and we don’t know why.

I’ve been thinking a lot about Mary lately. (I’m not Catholic, but there is a lot about Catholicism that I appreciate.) If anyone understood the pain of unfairness, she did. Watching your 33-year-old son being brutally slaughtered by an angry mob is about as unfair as it gets. I don’t even care that thinking about Mary is on the Unofficial List Of Things Good Protestants Don’t Do, because this is keeping me afloat right now.