Please don’t ask me how I am

September 6, 2012

“How are you?”

“What’s new?”

“How’s the insurance situation?”

“What’s happening with your treatments?”

“Do they expect you to improve?”

I know these questions come from a place of love, but for heaven’s sake, STOP ASKING ME ALREADY!  The problem, of course, is that I have so many great people in my life who care.  I am grateful for that, really I am, but I wish they’d care a bit less verbally!

Every time I speak to someone who I haven’t spoken with in a while (and every time I see my grandparents, who are always anxious for news and forget that we just spoke about it 3 days ago) I get asked some version of these questions.  This can translate to no questions for several days, or having this conversation 5 times in 1 day!

One of the challenges of having crappy health is keeping a healthy perspective.  I know you know what I mean.  Since I am unable to work, I don’t have a job to distract me.  Since I am not able to go out much, I don’t have other “news” to discuss.  Since I’m not able to date, I can’t distract my friends with tales of lurid sex (but maybe I should just make some up?)  This leaves me with a lot of free time to dwell on all the shittiness in my life…. or not.  I opt for not.  I try hard to keep some balance.  I read books and blogs and other useful sources to learn as much as I can about my various health conditions and the possible treatments for them.  Then I pursue those treatments.  I read books and blogs on personal finance and on various personal development topics so that if (when?) I get better, I will have a life that I truly enjoy.  I read novels and watch tv as an escape to a fantasy world.  I spend as much time as I can with family and friends, even if some of that time can only be spent by phone or email.  I spend time thinking about my situation in terms of my various options (or lack thereof) and how I might handle each scenario.  So basically, I try to avoid woe-is-me thinking as much as I can.  Sure, I have my off days – who doesn’t?  But I try to limit them and to focus on other areas of my life.

And it works.  It works really well.  Until a friend asks what my current health status is, and if I think I’ll improve, and what the doctor says, and what I’ll do without health insurance (as of this weekend!!!) and where my LTD appeal stands and and and and and…..  It drags me back into the mess that is my life, and it makes me dwell on the lousy parts and re-realize how uncertain the possible improvements really are.

So I’m done.  That’s it.  No more.  From now on, I will not answer these questions (with exceptions made for my parents and grandparents, who are all awesome and supportive and wouldn’t put up with this ban even if I tried!)  I am going to write up answers to the standard questions, make a personal FAQ, and simply email everyone who wants to know.  And if they don’t like it?  Too bad.  If they really care, they’ll understand that this is what’s best for my sanity, that their questions force me to dwell on the negative when I am trying so hard not to do that.  I will try to explain, and then I won’t answer their questions.  That’s it.  Fini.  End.


Holes in the so-called safety nets

August 28, 2012

There’s this idea that the so-called social safety nets are just hanging out, waiting for us to jump into them whenever we feel like it.  To listen to the politicians speak, these safety nets are easily gotten, easily abused, taken for granted, and a huge waste of money.  If you don’t live in the U.S. and/or don’t know what I’m talking about, check out the links for explanations.

I can’t speak about every type of “safety net” because I haven’t tried them all.  And I can’t speak to all of the politicians’ points.  But I can definitely say that these services are not so easy to get!

In this fight for services, I have a lot going for me: I’m intelligent, I am well educated, I have unlimited internet access and my own private computer, I am well organized, and I used to deal with red tape and bureaucracy on a regular basis at a previous job.  So even while other people struggle, this should be really easy for me, right?  Yeah, right.

A couple weeks ago I made it very clear how I feel about Medicaid.  And I was thankful that at least in my state, I’m eligible to apply for Medicaid, called MassHealth here.  Of course, there’s a downside: I followed all the rules and it’s still not working out well.  When my former employer’s benefits office told me I was losing my health insurance in just two short months, they told me that it would take 3 weeks for my MassHealth application to be processed, so I should wait to apply.  If I applied too soon, my current insurance could get in the way, so I should time it to get MassHealth just as my insurance ran out.  I called MassHealth’s customer service line several times and spoke to three separate people.  Each person told me the application would take 3 weeks to process.  The automated system said that the current processing time is 15 business days.  Ok, so it’s 3 weeks; that’s not so bad.  But it turns out, it’s 3 weeks to process the initial application!  After that application, it takes 90 days to process the supplemental disability application!  The supplemental disability application states that this time can be speeded up by including medical records, so I included all of mine back to January 2011, even though they really only needed the 12 months..  Today I spoke to the office that handles those applications.  It was explained that they are still required to contact my doctors and to give them 30 days to respond with my medical records.  Yes, these will just be duplicates of the records that I already provided.  So what was the point of including those records?  None.  I did not save time, I just spent more on postage and wasted paper.  Fantastic.  So now I will have a 2-month gap between when my insurance ends and when I could even potentially be approved for MassHealth.  Of course, they could still deny my application.  And what am I supposed to do in the meantime?  Well, I can stop seeing doctors and taking medications, but that’s not entirely an option.  There’s one medication that I can’t stop without doing serious harm, and another that would do moderate harm.  I can either pay for these out of pocket myself, or I can spend $550 per month for COBRA.  Great options.  But I guess it’s my own fault – I followed the rules.

Services like housing vouchers and food stamps are shrouded in mystery.  Even though these are state and federal programs, they are handled at local levels.  It takes a few phone calls to find the right office.  This office will not provide information by phone and there’s nothing helpful online.  They do not make appointments.  They simply say that I should show up with my paperwork, then they’ll tell me which services I’m eligible for.  I don’t even know which services they handle!  So the only way to find out what I might be eligible for is to show up at this office, but of course showing up can be hard for people with health problems.  And I’m slowly learning about others offices that might be able to help with this kind of thing, but only by asking for advice from other people who have gone through this process.  As far as I can tell, there is no one central calling center or web site to provide information on what services exist for people with no income and an inability to work due to health problems.

And then there’s Social Security Disability.  Should I even discuss this?  I’ve found different statistics for how many people are denied the first time they apply, but the lowest number I found is 50%.  If these numbers are right, that means that more than half, possibly much more than half, of applicants are denied the first time they apply.  And quite a few are denied on appeal, too.  The application is long and arduous.  It feels nothing like a safety net and everything like a test.  Filling out the application is a test, waiting to hear back is a test, going through the appeals process is a test.  And if you pass?  You get enough money each month to pay your rent.  Maybe.  If you’re lucky.  Of course, there won’t be much money left over for frivolous things like food, but that’s what food stamps are for… if you can figure out how to apply for them.


Socially limited

August 23, 2012

There’s a woman I know who I really like.  She’s a friend of a friend and we belong to some of the same social groups, so we see each other around, but we haven’t hung out too much outside of that.  Then this week she invited me to her place to watch a movie and hang out with a bunch of other people.  Social time!  I could hang out with someone I like, and hopefully meet some of her cool friends!  I feel like I never get to be social anymore.

And today was no exception.  I just don’t do as well in the evenings.  I have more energy earlier, but people are at work then.  I had my doubts all day long, but I kept hoping I’d make it.  I took a shower so I’d be all nice and clean.  I planned out what I’d bring for food, since I always have to carry food while I’m on this whacky diet.  I thought about what energy threshold would determine if I’d walk or drive that particular distance, and if I had to drive, what route I’d take to get around the road construction near me.  I had it all figured out.  And then I fell asleep.

Taking a nap is generally not a good thing for me.  After a nap, I don’t feel right.  Of course, this wasn’t an intentional nap.  I was reading a book and I fell asleep, simple as that.  After I woke up I felt groggy and just “not right.”  I finally gave in to my rumbling tummy and had a snack.  Then another snack.  Then an early dinner.  I shouldn’t have been so hungry after the huge lunch I ate, but I was.  And I still felt off somehow.  I rested.  I relaxed.  I knitted.  And I still didn’t feel right.  The clock was ticking.  I should have left by now.  I watched tv. I should be there by now.  I read the news.  They’ve probably started the movie.  I washed the dishes.  They’re probably all having fun right now.

I finally gave up.  If I was going to go, I’d have left already.  If I didn’t feel up to leaving by that time, I knew I just wouldn’t be up to it at all.  There was a time I’d have pushed myself to go anyway.  I’d have felt bad the next day, but I would have pushed through, and by the second day I’d be ok.  But those days are long gone.  If I pushed myself today, it could mean 2-3 stuck inside resting, and it just wasn’t worth it.  I have other, daytime plans over the next few days.  I’m in my early 30s but going out in the evening is just out of the question right now.  Sometimes life just sucks.

Thank goodness I can still go out during the day most days!


Freaking out over finances

August 21, 2012

Two weeks ago I was feeling pretty good about my finances.  Actually, I was feeling good about my limited spending.  You see, I grew up in the middle class.  My parents didn’t go on extravagant trips to Europe or buy expensive clothes, but we also never worried about having enough food or even toys.  They earned decent livings and also saved a lot, and it worked out.  I always assumed I’d be the same way.

And I was.  I thought about money, but I was fortunate to never stress out about it.  I didn’t earn a great living, but it was enough, and I kept my spending down, so I was on track to afford retirement at around the normal age.  In the last year I’ve cut my spending way down because of my precarious income predicament, and I’ve done well with that, but the thing is, I still have expenses.  There’s rent, utilities, healthcare, food…. I simply need to have some income, and now I have none.  I was saving for retirement, and I can spend that now, but it won’t last terribly long, and then what?

Technically, nothing has changed in the past two weeks except my perception, but boy has my perception changed.  As I’m getting farther into the LTD appeal process, I’m realizing that I could lose.  Yes, the odds are in my favor that I’ll win, but not by a huge margin, and I’m nervous.  If I lose, then what?  I’ll have a big gap before social security kicks in, and even then, SSDI won’t be enough to live off of.  What will I do?  I’m a bit panicked.

I know that my only option would be to move in with my parents, but I just can’t imagine how that would work.  The timing would be that I’d move in with them just as they put their house on the market.  That feels impossible.  And what about my furniture?  If I get rid of it, I won’t be able to afford to replace it if I move out on my own again.  But will I ever live on my own again?  And food could be really tough, with all of my restrictions; they’d have to rearrange their kitchen.  More than that, they’d have to rearrange their lives.  I don’t want to do that to them or to me.

And what would happen in the long term?

If I win the appeal, LTD would cover me until spring of 2014.  That isn’t long enough, really, but by then at least I’d know more definitively if I’ll ever be able to go back to work.  And it will give me more time to make a plan.  And if I lose, I need a plan yesterday.  I just wish I had one that I felt ok with.