The “almost” feeling

November 20, 2011

Do you ever get warning symptoms before you get sick?  What about before you get a flare?

For good or bad, having a chronic illness forces us to be much more aware of our bodies than a lot of us would otherwise be.  I’m pretty sure I would have ignored the way I felt first thing this morning, but after years of dealing with these illnesses, I’ve learned that a sore throat isn’t always just a sore throat.  For me, it’s a warning signal.  This is my body’s way of saying that something bad will happen soon.  If I don’t get some sleep in the next day, I’m going to get sick or get a flare or both.  Fun.

Now, on the bright side, getting sick would get me out of some unfortunate holiday obligations this week.  But it would also cause me to miss some fun holiday stuff too.  I guess I better pay the bribe and get some sleep.  If only it was that easy.  I fall asleep as soon as my head hits the pillow, but for some reason I’ve been waking up about 7 hours later, for no good reason.  Still, I can’t risk it, so tonight I’m taking a Benedryl, turning off my cell phone, and getting some sleep.  I hope.  12 or 14 hours should do the trick, based on past experience.

Yep, I’ve got the sore throat and the weakness and some fatigue and I know what it means.  I know what this means now.  The thing is, 10 years ago, I didn’t know what it meant.  And I’m pretty sure that even now I’m missing signs from my body.  Maybe there’s something I could have done yesterday, or maybe there’s more I could do now.  I think that a key part of treatment should be learning how to read our bodies.  Does anyone even teach this?  Maybe a doctor once told me to start paying attention, but I don’t remember it.  Autoimmune diseases can be frustratingly unpredictable.  Even a 12 hour warning is helpful.  I just wish I knew better how to recognize it.  I wish we all did.

 

If any of this sounds familiar, if you can relate, please share it on Facebook and/or Twitter.  This blog is new, and it would be great to share it.

Leave a Comment » | Decisions, Educating, Expectations, Frustration, Limitations, Pain, Rants, Symptoms, Unpredictable | Permalink
Posted by chronicrants

Truly *understanding* chronic illness

November 19, 2011

“Why are you taking a leave of absence from work?”

[stunned silence]

“The usual stuff, but it’s gotten worse.”

[confused silence]

___________________________________________

I am shocked at how many times I have had this conversation.  To be honest, even one time would be shocking, but I keep having it over and over again.  A few weeks ago I wrote this post about wearing masks so that people won’t see what I’m going through.  It’s something we all do, and we each do it in our own way.  For me, it means letting people know there’s a problem, but not letting them see how bad it really is.  That seems to be backfiring (as these things always do, even though I pretend they won’t.)

A few close family members and friends understand.  I let them see how bad it was, or they saw through my facades.  A few others understand because they’ve gone through similar things.  But most people just don’t get it.  They know I have some “issues” but figure they’re under control.  I seemed ok, except for occasionally having to cancel plans or not being able to drive too far in a day, and those are minor, right?  So why should I need to take time off from work?  I hate to spoil the illusion, but it’s time.

I keep seeing statistics about how many people live with chronic pain, how many have arthritis, how many have autoimmune diseases. These number make for catchy headlines and memorable soundbites, but where’s the education?  Maybe the problem is that we’re all wearing masks.  We need to make our family and friends understand our illnesses, so that they can make their people understand it, so that maybe society will start to get it.  The ignorance is so frustrating.  Yes, I wear masks, but even when I do show people what’s going on, a few weeks later I seem ok, and they forget all about it.  I need them, we all need them, to understand.

If any of this sounds familiar, if you can relate, please share it on Facebook and/or Twitter.  This blog is new, and it would be great to share it.

2 Comments | Educating, Expectations, Frustration, Isolation, Limitations, Rants, Support, Symptoms, Thoughtfulness | Permalink
Posted by chronicrants

Searching for fairness in healthcare

November 17, 2011

Continuing yesterday’s theme of the screwed up health care system, I just read this article about special medical services to give second opinions.  They reevaluate diagnoses and treatments and make changes as needed.

Now, doctors make mistakes.  They are human.  It happens.  I think it is responsible of patients to get second opinions.  So you may be wondering why I think this is a problem.  Here’s why: this service isn’t available to everyone!  I just looked at the Best Doctors web site, since they’re located near me, and I saw that the service is offered only through employers!  This is like the FSA situation, where only some people have access to a fantastic benefit.

Back in the day it made sense to tie health benefits to employment, but is that still really the case?  For those of you living outside of the United States you probably think this is completely nuts.  You’re right!  I’m certainly not about to defend this system.  Why should I get better health insurance now because of where I work than I had the last 10 years (my entire independent working life)?  If I change jobs, why should my benefits change?  If I get a new job that pays more or less or is located someplace else, those aspects will affect my life.  That makes sense.  What doesn’t make sense is that the amount I pay for medical costs will change.  What doesn’t make sense is that I may have to get new doctors.  What doesn’t make sense is that my medication may not longer be covered by health insurance.

Congress failed.  Yes, untangling health insurance from employment would be a huge undertaking, but wouldn’t it be worth it?  Mandating that employers provide health insurance sounds good, until you realize that many will provide only the minimum, and that this doesn’t help the unemployed at all.  We need a system is that is fair for everyone.  We should accept nothing less.

If any of this sounds familiar, if you can relate, please share it on Facebook and/or Twitter.  This blog is new, and it would be great to share it.

Leave a Comment » | Educating, Expectations, Frustration, Limitations, Medication, Politics, Rants, Symptoms | Permalink
Posted by chronicrants

Carnivaling about gratitude

November 15, 2011

I’m excited to be part of Chronic Babe‘s blog carnival today!  This week’s carnival is about gratitude.

Gratitude is a tricky thing.  Even if you have it one day, you may not have it the next.  There are many things I am be grateful for.  Most of these are somewhat obvious: family, friends, having a decent apartment and enough food.  The reason I wrote the post on appreciating my body is because, despite all of its flaws, it still offers me quite a lot, and I don’t want to take that for granted.  I hope you can find a way to feel the same way about your body.

Leave a Comment » | Expectations, Limitations, Milestones, Raves | Permalink
Posted by chronicrants

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