Tag Archives: asthma

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?

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Love/Hate Update

Love:

-yoga routines designed specifically for back pain

-figuring out how to get the blooming laundry up the blooming stairs independently.  Just being honest here!  Anyone with any kind of mobility issues knows what I’m talking about!

-warmer weather

-text chats with my sister in which we debate on whether or not vultures are gross and unnecessary.  (I lost one, by the way.  My claim that all the vultures in Disney movies are creepy did not stand up to the fact that my sister has a biologist friend who is studying vultures.)

Hate:

-pollen.  Been hanging out in Hotel Yellow Zone a lot lately.  The asthma doc said it’s going to be a rough summer allergies/asthma-wise.  She wasn’t kidding!  Oy.

-Benadryl tablets.  Is it just me, or are they the most unnatural shade of pink ever?  Seriously, they look like they’re radioactive.

-how often I read about spiritual abuse these days.  Don’t get me wrong, I love that more people are being brave and telling their stories.  But said stories never should have happened in the first place.

-when people deny the existence of spiritual abuse out of sheer arrogance and stupidity

-how difficult it can be to form meaningful relationships after being in toxic church environments

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.)