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!

~~~~~~~~~~

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

Leave a Comment » | Decisions, Expectations, Healthcare, Isolation, Job, Limitations, Rants, Symptoms, Unpredictable | Permalink
Posted by chronicrants

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!

Leave a Comment » | Decisions, Educating, Expectations, Frustration, Healthcare, Insensitive, Isolation, Milestones, Pain, Rants, Support, Symptoms | Permalink
Posted by chronicrants

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!

If you can relate to this, it would be so awesome if you’d click on one of the social media icons below to share this.  Thanks!

1 Comment | Educating, Frustration, Isolation, Limitations, Pain, Rants, Symptoms | Permalink
Posted by chronicrants

Time to stop editing my health

February 14, 2012

“Can you come to brunch on Sunday?”  Gee, why does that suddenly seem like such a complicated question?

I was invited to a potluck brunch for this weekend, and as I was giving my answer, it occurred to me just how many different answers I constantly give to that same kind of invitation, depending on who’s inviting me and how I feel at the time.  Right now I’m starting to flare (well, a flare within a flare) and that makes this weekend especially unpredictable (or maybe just predictable in a way I’m refusing to believe at the moment.)  There’s always the question of how much to share, and what do I really want this person to know?  And then I realized the most important point of all.  But I’ll get to that.

Invitation: I want to be there, but I know I might not be able to make it.  What to say?  I need an excuse, in case I don’t show up.

Close friend: I’m starting to have some bad pain in my foot, so I don’t know if I can make it, but I’ll be there if I can.  I’ll let you know, but it might be at the last minute.

Everyone else (these answers hint at the truth for less-close friends, and are totally uninformative for acquaintances): I may have to [insert weak excuse here], but I’ll try my best to be there.

Preparing: I don’t know if I can go, but even if I can, it might be tough.

Close friend: The pain is worse.  If I make it, I won’t be able to bring anything for the potluck.  Cooking isn’t happening now, and I wouldn’t be able to walk through a store to pick something up.

Everyone else: Um, by the way, is there parking at your place?  Yes, I’d normally walk, but I, um, have to be someplace afterwards and I’ll need my car.  Oh, and what floor do you live on?  Is there an elevator?  Oh, just wondering.  I, um, have a bad knee.

Day of: If I can make it, then all’s good, and if anyone comments on my limp or other visible symptoms, I’ll just make something up.  But if I can’t make it…..

Close friend: Damn this fucking pain!  Hopefully I can make it next time.  I hope you have a great party – let me know how it goes!

Everyone else: [Short email] I couldn’t get out of that other thing [mention previous weak excuse].  I won’t be able to make it, but thanks anyway.  Hopefully I’ll be there next time!

How do you handle this kind of thing?  I do this because it’s the best I can think of, but what I wonder what other people do and if there’s a better option.  I hate hate hate editing myself.  In all other parts of my life I just say what’s on my mind and it’s so much easier.

And then the most obvious point came up and whacked me on the head: Why do I do this?  Why do I make up different stories for different people?  Why not tell everyone the truth?  Obviously I wouldn’t tell a stranger the whole truth – that’s way too complicated.  But why not just say that I have pain sometimes, and right now it’s acting up, so I can’t predict if I’ll be able to make it to the brunch on Sunday.  Sure, they may have a lot of follow-up questions, but if I’m not in the mood to deal with it, I can always brush them off.  I can say that I can’t talk about it now, but I’d love to set aside a time to go over it with them later.  Why not?  

I think that I may just have to try this from now on.  It may not be easy, but balancing out the different lies and half-truths isn’t so easy either.  Besides, I’m generally a very honest person.  People think I’m honest to a fault.  The one thing I lie about is my health, and that’s just stupid.  I don’t have the physical, mental, or emotional strength to deal with that kind of crap, so why am I wasting my precious energy on it?  So for the next few months I’ll try telling the truth to everyone.  I can’t wait to see how that goes.  And it’ll have a fantastic added bonus: I won’t have to worry anymore about when and how to broach the topic – everyone will already know!

If you can relate to this, it would be so awesome if you’d click on one of the social media icons below to share this.  Thanks!

2 Comments | Decisions, Expectations, Frustration, Isolation, Limitations, Pain, Rants, Raves, Symptoms, Unpredictable | Permalink
Posted by chronicrants

« Previous Entries
Next Entries »