I promise you, it’s no vacation

December 1, 2011

A medical leave of absence is work.  It’s hard mentally, physically, and emotionally.  I’m sure that some people who ask about my time off as if it was a vacation mean well.  They probably just don’t know how else to ask.  They feel awkward asking directly about my health.  But then others really do seem to think that it’s a vacation.  They seem to think I’m having a ton of fun, enjoying myself, living it up.  I’m so sick of those people.  I just want them to live in my body for a day or two, just so they’ll understand.  This is no vacation.  This is hell.  I would love for it to end.  I hate my job, but I would gladly go back if it meant I was feeling better.  But it doesn’t work that way.  I feel like crap.  When I find myself watching tv in the middle of the day, I start getting depressed.  I wish I could go out more and do more.  I wish this was fun.  But it’s just not.  No, this is definitely not a vacation.

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Political interference

November 27, 2011

Politics affects all of us.  It has to.  Government builds and maintains infrastructure (roads, mass transit) and regulates taxes.  Government creates laws and enforces them.  Government controls the big picture and also a lot of minutiae.  It must play a role in our lives, but I question how big of a role.

Because of my illness, I rely on my government to create and enforce non-discrimination laws, to keep the roads and sidewalks passable, and to ensure that the medications I take are safe for consumption.  These are all important.  However, I feel that sometimes government goes too far in “protecting” its citizens.  I will write more later, but for now, think about medical marijuana and assisted suicide.  How involved should the government be?

In the United States, one big problem is that some states have legalized each of these, but the federal government does not recognize them as legal.  That sets patients and doctors up for potential problems, and that’s not fair.  It must be decided once and for all whether or not states can regulate either of these areas.

As far as marijuana goes, I won’t get into whether or not I think it should be legal for general use.  However, for medicinal purposes it should be treated like any other drug.  There should be studies to determine its efficacy, then it should be subjected to an FDA approval process to ensure it is safe for medicinal use.  Why not do this?  After all, it is no more harmful to a person than alcohol, cigarettes, or many prescription medications.  It is not dangerous to non-users as long as second-hand smoke is avoided (it could follow the same rules as cigarettes) and people do not drive under the influence (it should follow the same rules as alcohol.)  I would happily accept government regulation of medical marijuana so that I could trust that it came from good sources.  I can not accept, though, that the government will not even consider it.  Given the choice between the side effects from marijuana or the side effects from prednisone, I’ll choose pot, thank you very much.

Now, as for assisted suicide, the idea that suicide is illegal is ludicrous.  A person who wants to commit suicide should get proper counseling, of course, and be of sound mind.  But if a terminally ill person is in a lot of pain and wants to end their suffering a few weeks early, why shouldn’t they be allowed to make that choice?  And if they are going to end their suffering early, shouldn’t it be done with the aid of a doctor, so that it is done in the least painful way possible?  I simply can not imagine why people have a problem with this.  And I certainly can not see any reason why the government should be regulating it.

These are just my opinions, of course.  Everyone needs to do their own research and their own thinking.  For me, though, the answers seem very clear.  My opinions are strong, so I will definitely be elaborating on these in later posts.  For now, I just needed to vent a bit.

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Self care is *not* a vacation

November 24, 2011

Family gatherings.  They’re different things to different people.  With just one exception, I really enjoy spending time with my family, and today was no different.

For the first time in days, I got out of the house and had contact with people, which was nice.  I feel very lucky that family gatherings are generally fun and are usually not stressful.  I know that’s rare, or at least more rare than we’d all like.  Still, it wasn’t easy.  I put on a smile and acted like everything was fine around most people.  When a close relative asked how I’m enjoying my “break from work,” though, I had to say something.  I explained that this wasn’t a vacation, that I’m really not feeling well and I’m trying to use it to get better.  I said that the last time I left the house was on Tuesday, and that was only to get groceries for my Thanksgiving cooking.  Before that, I hadn’t been out since Sunday.  I pointed out that if I’d tried to go to work this week, I probably would not have felt up to attending the Thanksgiving meal.  So this “break” is allowing me to take care of myself.

I said it nicely, just to educate him.  Thankfully, he got it right away.  It’s frustrating to have to educate people over and over, but in this case it’s worth it; it means that next time he’ll understand and he’ll ask how I’m doing instead of if I’m enjoying the “break.”  Either way, I know he’s always going to be supportive, and I appreciate that.

I’m not going to do a big Thanksgiving article, but I will say that I am very thankful for my amazingly supportive family and extended family.  As we all know, many of us couldn’t get through this without the help and support of our loved ones, and I feel very fortunate to have a great group of relatives around me.

Life can be shitty, no doubt.  So when I’m having tough weeks like this one, I try hard to remember the things I’m grateful for.  After all, it’s not all bad.  The important thing is to remember that.

 

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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.

 

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