Daring to dream

January 8, 2013

I’ve come up with yet another career plan.  I’ve made so many plans in the last few years.  This one seems as plausible as any… if I go back to work someday.  As my health got worse in recent years, it seemed more and more important to have alternative plans because I knew I couldn’t keep working the way I was.  Then when my health got really bad, I felt too lousy to bother trying to figure out a plan.  And now I’m back to planning.

Dreaming

The specific plans don’t matter.  They generally involve consulting in different fields where I have knowledge, part time work in areas that would provide benefits, and jobs in fields that I always found interesting but that won’t take too much extra training.  And they all have something in common: they require me to be in better health before I can attempt any of them.

My naturopath told me yesterday that she thinks it’s a good sign that I’m so antsy to prepare for the future.  I know she’s right.  I’ve been thinking the same thing lately.  When I felt so horrible that reading a chapter in a book was a chore, of course I wasn’t thinking about returning to work.  But now that I’m feeling somewhat better, I’m anxious to feel completely better so I can do more!  It’s a strange in between zone, where my brain is jumping ahead and my body isn’t ready to follow.

Of course, this isn’t just about jobs, but I think that jobs are the easiest thing to focus on.  My friendships are awesome, so there’s no need to work on those.  My family is great, except for the sibling I don’t get along with, so there’s nothing to work on there.  I want a relationship, but that means dating, and more than that, it means being open to being vulnerable.  While my health is stopping me from dating, it’s my past experiences that’s stopping me from being vulnerable.  I’ve been hurt so many times, and I’m not ready to go through that again.  Now that I’m having sex again, I don’t mind waiting to date.  I really want to be able to do more in a day, like get a haircut and see friends and do laundry all in the same day.  I dream about that a bit, but the idea of “more” is so nebulous, and so hard to imagine, that I don’t dwell on it much.  I worked at a job as recently as late 2011, but doing “more” without feeling horrible was a long time ago and it’s harder to remember.  So I think about jobs, careers, possibilities.

And obviously there’s the money part.  I don’t know where I’ll be living in a few months, and it all depends on the insurance appeal decision.  I haven’t been buying new clothes, even new winter socks without holes, because of the money.  I fantasize about being able to buy new slippers without worrying about the money.  So earning an income would be fantastic.

The cognitive aspect is important too.  I miss using my brain.  Of course, I’m still having cognitive problems…. it took me a long time to think of the word “cognitive” as I was starting this paragraph, actually.  But if I can work, then I can use my brain more and give it exercise, and if I’m working then it means that I’m able to use my brain, and how fantastic would that be?

I know that returning to work, to the “normal” world, to the world where I don’t dread the question “what do you do?” is pretty far off.  It could be months, it could be years.  It may never happen.  But right now I’m dreaming.  I’m making plans.  Because if it does happen, I want to be ready.

Leave a Comment » | Expectations, Frustration, Isolation, Job, Limitations, Raves, Relationships: Family & Friends & Dating & Sex, Symptoms, Unpredictable | Permalink
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Disability insurance: Where’s the fairness?

March 20, 2012

In about two weeks my short term disability (STD) insurance will end.  My health will probably be no different than it is today, but my insurance will disappear.  Luckily, I paid into my company’s long term disability (LTD) insurance.  Last week I got all sorts of information about this benefit.  I learned how much it will pay, how the money will be taxed, and how my other benefits, such as health insurance and the FSA, will be affected.  Of course, this is assuming that I get LTD.

My rheumatologist has been on vacation for over a week.  When she gets back later this week, she will find some forms that are waiting for her at the office (assuming the postal service delivered them on time.)  I hope that she fills out these forms and sends them in quickly.  I must fill out my own set of forms, with crazy questions like asking me to list all of the illnesses I’ve had in the last 5 years, and send them in.  And then I wait.  I wait and I hope that my application is approved the first time around.  As I wrote a couple of weeks ago, after years of people not believing that I had a real health problem, I still get nervous about this kind of paperwork.

Still, I will probably be approved.  I now have years of medical records that document my condition, and doctors who will explain why I can’t work.  I feel so fortunate.  The payout is decent – enough to pay all of my bills if I’m frugal.  I get to keep my (very decent) health insurance.  I lose some benefits, such as the FSA, but so be it.  I can even work to a certain extent while I am on LTD (when I eventually feel up to it.)  This is all much better than what I had expected.  But there’s one thing that really bothers me: fairness.

Ok, the world isn’t fair.  We all know this.  Still, it doesn’t seem right that I get this benefit because I worked at a company that provides LTD, while so many others do not.  If I had gotten sick 10 years ago, I’d simply be unemployed now.  And if my current inability to work doesn’t improve within the 2 years that I have LTD?  Then what?  Social security is a joke – it wouldn’t even cover my rent right now.  Even if I moved out of state to an area with a lower cost of living, it wouldn’t be enough.  I would be on Medicaid and food stamps and would still have trouble paying the bills.  Is this the way we want our system to work?

I feel so grateful for the amazing benefits I have, and so horrified that they are not standard.  I can not understand why more people don’t stand up and insist on receiving these kinds of benefits.  I suppose everyone thinks it won’t happen to them.  That’s what I used to think.  But most of us know someone who has had to deal with illness, so isn’t it just possible that it could affect us too?  We need outrage right now.  I’m too tired to fight for this kind of universal benefit right now, but when I get my energy back, when I’m feeling better, it will be right near the top of my list.  When I go back to work, I want to fight for equality and fairness.  It’s an uphill battle, but one that I look forward to fighting.

 

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

5 Comments | Educating, Expectations, Frustration, Healthcare, Job, Politics, Rants, Unpredictable | Permalink
Posted by chronicrants

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

Leave a Comment » | Decisions, Expectations, Healthcare, Isolation, Job, Limitations, Rants, Symptoms, Unpredictable | Permalink
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The fog of too many possible causes

January 18, 2012

Some possible sources of my fatigue: PCOS, side effect from meds, hypothyroid, low iron, chronic pain, connective tissue disease, some unknown cause.  Gee, that really clears it up, doesn’t it? [insert needed sarcasm emoticon here]

I’ve been depressed lately.  It’s frustrating.  I’ve been depressed before, so I know what to watch for, and it’s not extreme right now – I’m not suicidal or anything.  I’m just in a long-lasting funk.  It’s come and gone recently, especially over the last few weeks.

I’ve been worrying about my future.  What if I can’t go back to work?  How will I make ends meet?  I’ve looked at apartment listings online. I could save money by moving to the suburbs.  I could save more by moving out of state.  A 3-bedroom house in Boulder rents for less than my not-at-all-fancy 1 bedroom apartment near Boston.  But moving away from my support system, my family, my friends, my doctors, my home?  I’m just not ready for that, even though the climate here is lousy for me.

These are very legitimate concerns, especially as my back-to-work followup with my rheumatologist is approaching, even though I’m obviously not back to work yet.  I know that I’m thinking things through rationally.  I’m worried, but not over-worried.  I’m bored, but managing to mostly stay busy.  I’m frustrated, but that’s nothing new.  So why am I feeling this way?  It doesn’t make sense!

Today I felt great.  I felt uplifted as soon as I got out of bed, which was odd, since I’d woken up early from odd and scary dreams.  Still, once I got up I felt really good.  Why was today different?  I thought that if I could figure out why I felt so good today, I could replicate it.  Sounds reasonable, right?

As I thought about it while walking outside, feeling especially good, it hit me all at once, really hard.  DUH!!!  It’s sunny out today!  We’ve had a lot of gray weather, and today is sunny!  I feel like such a moron.  Ironically, because I was depressed and focused so much on a few specific areas of my life, I completely forgot to watch for my seasonal affective disorder, which seems to have been the cause of the depression.  Now let’s be honest, I’m probably experiencing some depression from everything I’ve been going through lately, but I think that is at a level that I’m comfortable with.  It’s when it started getting worse (as the days got more overcast) that I got worried.  And now I’ve finally figured out what was going on.

One of the difficult things about these illnesses is that any given symptom can have many possible causes.  It’s so hard to keep track of the possibilities, and when we lose track, it can be disorienting.  I’m grateful to have figured out where this one symptom seems to be coming from, but what about the other symptoms?  What about the other people who can’t trace theirs?  There’s so much work to be done.  I hope it happens sooner rather than later.  In the meantime, I’ll be watching the weather forecast and hoping for more sunny days soon.

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

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