Where’s my crystal ball?

March 13, 2012

There are so many reasons why it would be nice to see the future.  I’d love to know if I’ll ever get married.  Will I have kids?  Will I get a better job?  Will my family be happy and healthy?

But right now I want to see the future for a different reason.  I accepted certain parts of my illness a long time ago, but this current downslide is different.  This is something that I never expected, and I’m aching to find out if I will get better… or not.  If I won’t get better, then at least I can try and learn to accept it, but if there’s a chance that I could improve then I’ll keep fighting.

I came up with an action plan today.  There are a lot of -ologists involved.  I’ll try everything from an endocrinologist to a hematologist, from a psychiatrist to a neurologist, but it would help so much to know if any of them will work before I spend a lot of time, energy and money on them. And I want to know if I’ll ever go back to work, if I’ll ever have the energy to really date again, if I’ll be able to go out for an entire afternoon again.

There are no certainties in life.  Health is unpredictable.  We just have to take things as they come.  Who hasn’t heard all of this before?  I can’t argue with it – it’s all true.  But I’d still rather have a crystal ball right now.


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Enduring a kerfloofy week

March 12, 2012

This is the longest blogging gap I’ve had so far.  When I started this blog in July, I blogged every day.  If I absolutely had to skip a day, I wrote two the next day.  A few months ago my health made it hard to keep up, and sometimes I skipped two days, or even three.  Then this week happened, and it’s been 7 days since my last posting.

It started innocently enough.  I skipped a couple days because I was tired.  Then I tried to blog, but I had lost my internet connection for the night.  And then things got kerfloofy. (Hmm, I thought that I made that word up, but I just check and it exists already.  Go figure.)

There are a lot of ways that I don’t handle my health properly.  I don’t do my physical therapy consistently, I don’t get enough exercise even when I feel up to it, I don’t get enough sleep.  But I do pride myself on how I handle stress.  I handled my difficult job, my ill relative, and my hurt friend all very well.  But then I got it: the long term disability application.  And my stomach has been in knots ever since.

When I left my job, I told them I’d be back in 3 months, maybe sooner.  This week I have to call my boss, then head over to clean out my desk.  I won’t be coming back at all.  As of three weeks from now, they are no longer required to hold my job open for me (and I know they won’t) and I will be in the process of applying for long term disability payments.  The hardest part of this should be how horrible I feel physically.  Most days it is.  But right now, the hard part is all mental and emotional: accepting that it has come to this.

For years I have known that I could end up receiving disability payments, but I never really believed it would happen.  I am 32 years old, and I am wondering if I will ever work full time again.  Chances are that I will, but what if….?  I would never get married to someone just for their money, but right now I sure wish I had a spouse so I could at least get on their health insurance.

The future is scary, but I know I have to find a way to deal with it.  If I’m going to feel lousy anyway, I sure don’t want to add stress on top of it all!


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Fearing disbelief

March 5, 2012

When I was in 7th grade, one day I suddenly had a lot of pain in my wrist.  My parents brought me to a doctor, who told me to wear a splint for 6 weeks and it would be all better.  Boy was he wrong!  This was to be the first of many symptoms.

Fast-forward to the tender age of 17.  I had seen many doctors – internists, orthopedists, surgeons (yet for some reason, no one suggested neurologists or rheumatologists) – and they didn’t know how to treat me.  They suggested I see a different kind of doctor: a psychologist.

I have nothing against psychologists.  In fact, I have a big problem with the social stigma surrounding mental health in the United States.  But in this case, it was upsetting that the doctors all thought this was in my head.  Then some family and friends started to think so too, and that was even worse!  Some thought that I was making up the pain in order to get attention.  Others thought that my subconscious was making up the pain.  It got to the point that even I started to wonder!  My mother was the one person who never believed their hype – she always knew that the pain was real.  I am so thankful for her.  I can’t imagine what would have happened to me if she hadn’t been in my corner.

My disability benefits were due to run out last week, and try as I might, I can’t get the overworked case manager to call me and tell me if I’m approved for a few more weeks.  I was worrying about this today when I suddenly realized why I’m so nervous: I’ve had years of people not believing me, and what if the insurance company stops believing too?  Those doubters when I was 17 were only some of the doubters I’ve faced.  There have been so many.  I still face the problem now, but I have a better handle on dealing with it.  With an insurance company, though, it can be very hard to argue. There’s no real person to convince, just an entity.

Now that I’ve recognized the fear I feel, the lasting affect of those years of being doubted, I hope that I can overcome it.  I hope that I can feel confident that people will believe me (or at least that I’ll convince them easily enough.)  It will take a lot of work; afterall, I’ve been facing the disbelief for many, many years.  Still, now that I recognize it, it’s time to get over it.

I refuse to waste any more energy on worrying about what other people think.


If you can relate to this, please pass it along!  Thanks!

At a loss for words: Where’s our CI vocabulary?

March 4, 2012

I’ve heard the rumor that the Eskimos have over 100 words for snow.  That’s a myth.  There is more than one Eskimo language, and there are a lot of words for snow, but not an usually large number.  For example, in English we have snow, sleet, ice, hail, flurries, slush, blizzard, etc.

If we have so many words for snow-type substances, why isn’t there a word to describe the weird feeling I get in my stomach that isn’t quite nausea and isn’t quite queasiness?

Where’s our CI vocabulary?

Where’s the words to explain this feeling that’s tired, and exhausted, but more than that, but not exactly fatigued, and sort of sleepy, but not quite?

Where’s our CI vocabulary?

We have so many words to describe “pain” such as ache, sharp, dull, and acute, but where the one to explain the constant not-quite-sharp-but-not-really-dull pain that ranges from a 2 to an 8 on my pain scale on any given day?

Where’s our CI vocabulary?

When I have trouble walking and I sort of trip, and it’s not from pain, how best to explain it?  It’s like my depth perception is off, but I can see just fine.  It’s like my foot isn’t listening to my brain, except that it is.  It’s somehow a weird combination, like my brain doesn’t tell my foot to lift off from the ground far enough.  Where’s the word for that?

Where’s our CI vocabulary?

Symptoms have been around for years.  Personally, I’ve had symptoms since before we had the words “smartphone,” “netbook,” or “blu-ray.”  If society can invent these words so quickly, why haven’t we come up with better descriptors for our physical symptoms?  I think it’s time that we did. Let’s start making up words.  With Facebook, Twitter, PInterest, and all the rest, we should be able to spread them around faster than I can slip in slush.  Let’s get started!

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Are you better yet?

March 2, 2012

When I was a kid, my family would drive to visit family several times a year.  The car trip took forEVer… 4 whole hours!  There was a decent amount of “Are we there yet?” coming from us kids in the back seat.  The longer we were on the road, the more emphasis the “yet” received.  We wanted to be there already!

I know everyone means well when they ask how I’m feeling, and when I’ll be ready to go back to work, but what I’m hearing is “Are you better yet?”  I try to remind myself that they only want me to be healthy, but it’s weighing on me.  Do they really thing I’d be better and return to work without telling them?  Do my close family and friends think that I’d be doing great and not let them know?  Asking constantly is simply not helping.  It’s pressure.  Every time they ask, and I tell them I’m not doing better, I feel like I’m letting them down.  They are disappointed.  I understand why they’re disappointed, but my natural instinct is to want to make them less disappointed, and I can’t do that, so then I feel guilty.

This is INSANE!  I feel guilty because I have to tell people that my health isn’t improving?!?!?

Everyone is different.  Some people may want to be asked about their health constantly.  That works for them.  It does not work for me.  I am mentally crafting an email now that I can send to everyone asking them to back the hell off.  I just need to figure out how to say it a bit gentler….


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