Suspicious of hope

August 30, 2012

We mourn the loss of our health the way we mourn other losses.  For me, I went through the 5 stages of grief back in my teens, when I realized the daily pain was going to be a permanent part of my life.  Then I went through them again at age 23, when I was diagnosed with an autoimmune condition for the first time.  These were different kinds of losses.  First I had to accept the current symptoms, then later I had to accept that things might get worse eventually.

About 10 years later, now I’m experiencing something new: hope for improvement.

At first, with the pain, there seemed to be no point in hoping for improvement.  After the initial rounds of doctor appointments, tests, and surgery, it was clear nothing would change.  I could accept that, because its effect on my life felt limited.  Unpleasant, horrible, obscene, but limited.  Later, with the autoimmune diagnosis, there still seemed to be no hope for improvement, and I foresaw a very difficult life ahead, but that was in the future and I was living in the present, so even though it was in a part of my mind, I tried not to focus on it.  More recently, of course, my life was altered drastically, and I didn’t feel anymore like I was really living my life, but more like I was just trying to get through it.  This is no way to live, but what choice did I have?  And that’s where the hope came in.

Now I picture my future as being better than my present and that worries me.  I worries me mostly because I have no idea if it will be true.  I picture a better future in part because I have some medical reason to hope, because I am pursuing new treatments and so far they have helped a bit.  But I also picture a better future because I refuse to picture a future like my present, or possibly even something worse.  I picture a better future because it’s what I have to live for, and I need that ideal.  But is it realistic?  Is it even possible?

I am scared to hope.  I am scared that I will get my hopes up and will then be crushed when I don’t improve.  My dreams are simple: to go back to work, to date, to travel a bit, to maybe even have a family one day.  But to anyone who has been ill like this, these dreams aren’t simple.  They aren’t easy and they aren’t a given.  Dreaming of these things could be a way of setting myself up for a huge disappointment.

How can I stop?  I honestly don’t know.  It isn’t as though I spend an hour daydreaming about what I’d do if I felt better; it’s much more subtle than that.  I hear about an interesting job, and wonder if that’s something I might want to do when I go back to work… and then I remember that I don’t work.  I remember a great trip I took and think about going back… and then remember that I can’t travel.  I think about how much I should save up for my next car… and then remember that I have no income to save.  I picture moving to a smaller apartment until I meet someone… and then remember that I’m not dating.  It’s hard to shut off these automatic projections of the life that I always assumed I’d have.  I suppose that in time, I’ll change my frames of reference, but I’m just not there yet.  So should my goal be to stop dreaming?  That’s a horrible goal.  And yet…

So a part of me is continuing to hope, even while another part wants to run away from any sign of hope.  And in the end, I just hope, desperately, that a little bit of what I’ve been dreaming of will come true.

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.

Remembering spontaneity

August 27, 2012

A friend called me up the other day and asked if I wanted to hang out.  He meant right away.  I didn’t hear my phone ring and by the time I got the message it was too late, but it really made me wonder: when did I lose all of the spontaneity in my life?

I remember a time not too long ago when I would find myself without plans on a Saturday, so I’d pick up the phone and call a few
friends to see who was around.  I remember a time when I’d decide at a moment’s notice to go away overnight.  It got to the point that I’d pack a bag and be out the door within 30 minutes.  Then I started keeping a toiletry bag always packed with spares of everything, so I could leave even faster.  A last-minute date?  A random outing with friends?  A local getaway?  Yes, please!

Now everything has to be thought through.  Do I have enough energy?  Do I need to save some spoons for tomorrow?  (If you don’t know what these spoons are, definitely click the link.)  What will I eat that satisfies the diet?  Can I tolerate the heat?  How much walking will there be?  Will it cause more pain?

These are all completely reasonable, understandable questions.  They make perfect sense.  And they’ve killed my sense of spontaneity.

I’m not suggesting that I have to be spontaneous every day, but it would be nice to occasionally do something that wasn’t completely planned out in advance.  I want to not know what I’m doing tomorrow (and not knowing if I’ll be watching tv versus reading emails doesn’t count!)  I can’t travel and that’s fine (well, it’s not fine, but I have no choice right now) but that doesn’t mean I can’t do something at the last minute closer to home.

I’m not ready to instigate something spontaneous.  I know that.  But I think there’s a glimmer of hope.  When I got my friend’s message my first reaction was that of course I couldn’t do something without notice!  But then I thought about it, and realized that, actually, I could, and I’d probably have a wonderful time.  When I looked at the clock, I realized I’d missed my chance (he only had a short time free,) but just remembering what it was like to make a spur-of-the-moment plan was fantastic.  Now I have to make sure I actually do that.  Soon.

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.

Medicaid makes me so damn mad

August 16, 2012

Medicaid makes me so damn mad!

Our entire healthcare system in this country is so incredibly broken.  Now, I’ve heard mixed things about healthcare in other countries, but since I’ve never lived in those countries I can’t comment on their healthcare.  My guess is that in most industrialized countries the healthcare is better than what we have here but it still needs improvement, but that’s just a guess.  What I do know about is the broken system in the United States.

I could rant about many different aspects of healthcare, and I have, again and again, but right now I’m thinking about Medicaid.

First, there was a posting in the forum of a personal finance web site.  Personal finance is a hobby of mine, and it often intersects with the health stuff (like in reducing expenses and paying for medical care, etc.)  This particular posting was from someone with a very low income who was wondering how she could possibly afford health insurance.  Several people suggested that she apply for Medicaid and they didn’t realize that in many states, including hers, she isn’t eligible for it.  In some states, people without children simply aren’t eligible, regardless of their financial or medical status.  This is absurd.  Why on earth is this being handled on a state-by-state basis?  When people assume that eligibility requirements are looser than they are, it skews their political beliefs, not to mention their view of their own safety net.  The American public needs a lot of education about this.

Then I applied for Medicaid in my own state.  Thankfully, in Massachusetts a single person can be eligible for Medicaid.  Of course, just because I can and should be eligible doesn’t mean I’ll get it, and if I do get it, I have no idea which of the many plans I would be offered.  This means that I don’t know if I’ll lose my PCP or not.  If I lose my PCP, then I won’t be able to get referrals to my specialists.  That means I would not be able to get my prescriptions.  Then I’d be screwed.  Shit.

I follow politics closely and so I am very aware of the current healthcare debates.  The Republicans were all for healthcare reform until the Democrats enacted it.  Now the Republicans want to repeal it simply because they want to hurt the Democrats.  WTF?!?!?!?!  Since they can’t repeal healthcare reform right now they are doing what they can: many Republican governors are refusing to expand Medicaid, even though they would get complete federal funding at the beginning and quite a large federal subsidy thereafter.  In looking to hurt the Democrats, they are hurting their own citizens.

And then there was this article.  Who on earth thinks that the yearly income limit for Medicaid should be less than the yearly premiums for health insurance?!?  Whether or not you believe that Medicaid should exist, can anyone really argue that as long as it does exist, it should be available for those who need it?  What’s the point in having a system that the people who it was designed to help can’t access?

This is madness, I tell you, madness!!!

I admit that I don’t have all the answers, but I would like to suggest a few anyway.  Please bear with me.  First, Medicaid, like Medicare, needs to be offered on a federal level, or at least it must be subject to federally-mandated minimums.  Clearly states can not be trusted to handle it.  Anyone who thinks that non-parents do not “deserve” healthcare as much as parents needs some serious help.  Also, Medicaid should be used to fill in the gap of people who want health insurance and who truly can not afford it.  If you don’t earn enough to cover basics like rent/mortgage, food, and health insurance, then you should be covered.  Finally, Medicaid reimbursement rates need to be increased.  I’m not suggesting that every medical visit warrants a four-figure reimbursement, but medical facilities must receive reimbursement that at least covers their costs so that they will continue to take on Medicaid patients.  The system doesn’t do the patients any good if reimbursement rates are so low that all doctors refuse them, and that’s what’s happening now (which is why I may lose my PCP.)

Like I said, I don’t have all the answers, but I think this would be a good start.  I’m sure you’re wondering how we’d pay for this.  Well, I don’t know, but let me ask, how are we paying for Medicare?  How much are we spending on graft and fraud?  Isn’t it worth keeping our citizenry healthy so that they can continue to work and thereby pay more in income tax (and probably sales tax too, since they’d be able to spend more?)  Personally, I need health insurance and social security so that I can focus on getting healthy.  Yes, some people may never recover, but there are others (and I sincerely hope that I’m one of them) who can, and who will gladly return to the workplace and to paying their fair share of taxes so that others can enjoy the support of the same system that helped them to recover.  Now that’s a system I’d like to see.

Good bye nausea, hello diet

August 15, 2012

Yesterday I said goodbye to the old diet and today I welcome the new diet – AT LAST!

There’s no doubt that the old diet helped – I felt soooo much better within a week of starting it.  But I think I could be doing even better than I already am.  And on top of that, I can bring back a whole lot of foods that I love (pasta sauce! popcorn!) and sure I have to give up a lot of foods I really enjoy (peanuts, broccoli, quinoa) but at least now I know that I’m on the right track.  Ok, sure, the tests aren’t 100% accurate, but it should be pretty damn close!

No, this won’t be easy, but what the hell is?  It’s WORTH IT!  I think that’s something that “healthy” people don’t understand.  A few have said to my face “Oh, I could never be gluten-free.”  To them, the option is to eat foods they love or to give up those foods.  To me, the option is to suffer nausea, diarrhea, abdominal pain, cramping, and fatigue on a regular basis, or to give up some foods that aren’t necessary for my survival.  When you look at it that way, it’s not much of a choice, is it?  So now I’ll give up a few dozen foods on top of gluten.  Some will be temporary and some will be permanent and I really don’t care – I’m just so glad to have a plan!

By the way, for anyone who’s wondering, the mold and herb tests came back with a few minor reactions but nothing much, and I only have one strong chemical reaction, so I’ll be checking all of my cleansers and nail polish (luckily I don’t wear makeup!) to make sure I’m not getting exposed that way.  For me, the big results were all in the food categories, which was really no surprise.

So now I want to say a big THANK YOU to everyone who has helped me.  My parents have been the most amazing, supportive people I could hope for.  Several incredible friends stood by my side offering advice and comfort.  My grandfather generously paid for the test when insurance wouldn’t cover it.  My naturopath suggested the test and went out of her way to get me a discount.  And so many readers have emailed, commented, and tweeted with advice and support.  Thank you everyone!  Let’s face it, in the CI world celebrations can be a bit too rare, so I’m thrilled to have a good reason to celebrate today.  This is only one step in the journey, but it’s a big one!

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