Even mourning is more complicated with a chronic illness

December 29, 2012

Someone close to me passed away this week.  It has been a difficult time, but it has been made a bit easier by the support of my wonderful family and friends.  They make all the difference in the world.

With everything that has been going on, I have neglected my blogging lately, which I’m sure you understand.  I did want to write today, but I will keep it short, as I will be leaving soon to spend more time with my family.

And that’s my point today: there is just so much to do when someone close to you dies, and it is made more complicated by chronic illnesses.

This week has been difficult and exhausted for even the healthiest members of my family.  For me, it’s just a bit more so.  Spending long stretches with family means bringing extra doses of my medication with me at all times.  I also need to bring meals and snacks, since my special diet means that I can’t eat the food that has been prepared for everyone else.  Of course, it’s also a strain on my adrenals, which are already struggling at their sub-par levels.  There is a lot of driving and a lot of walking, which my back and the rest of my body aren’t enjoying.  The stress doesn’t help my already-poor sleep.  And all of it adds up to make my fatigue worse.

And yet I don’t want to cut back.  I don’t want to stay at home.  I want to be with my family while we grieve together.

There is no perfect answer here.  I will just do the best that I can, just as we all do in difficult situations.  For me, this means ducking out occasionally for some quiet alone time in a separate room, being careful to eat good, healthy food at regular intervals, always carrying my medication with me, and taking time when I’m alone anyway to relax, meditate, read, or otherwise reduce my stress.

I hope to return to more frequent writing in the new year.  Until then, I hope that everyone is as well as possible during this holiday season.

Why dating isn’t happening while I’m ill

December 23, 2012

I noticed her as she walked into the room.  She wasn’t “my type” yet I found her very attractive.  I smiled at her and she smiled back.  This was the point where I would normally get shy and look away and hope that maybe she’d come talk to me.  But I’m trying to get out of my shell more, and flirt, and that’s easier to do because I’m not dating anyway.  Not dating = less pressure.  So I got up, crossed the room, almost lost my nerve, got my nerve back, and introduced myself.  And she flirted with me!

We found a quiet spot and chatted for a while.  Then we went our separate ways, and found each other later in the party.  We agreed to get together one day soon.  I wondered if I could manage to see her, but I was so attracted to her, and I hadn’t had a date in 8 months, and I hadn’t had sex in 9 months.  Something had to happen to change that.  I’ve been lonely at times and I’ve been horny at times, and often I’ve been both at once.  I figured it was worth it to try just one date.  After all, I really liked her.  But then I did something stupid.

She asked, “What are you doing tomorrow?”  Before my brain could stop it, my mouth said, “Nothing.”  My brain instantly pointed out, “Of course you’re not doing anything, you idiot, because you’re exhausted and even coming to this party was a ton of effort, and you promised yourself a day to rest.  You can’t go out with her tomorrow!”  I went home thinking that maybe I could make it work, but by morning I knew it was hopeless – I felt like crap.  I texted her that I felt lousy, but didn’t elaborate, and we made plans for later in the week.  I just hope I don’t have to cancel again.  If I cancel twice in one week, I know I’ll have to give up on her, because she’ll have given up on me.  But it would be nice if it worked out and I could have just one date with her.

By an odd coincidence, I also got a text earlier yesterday from an ex.  He was thinking of me and wanted to say hi.  I filled him in on the basics (not working, not dating, etc., because of worsening health.)  He said we should get together when I’m feeling better.  I quickly explained that I’m feeling just fine for sex.  It’s dating I can’t handle.  Once I’d assured him that my health was ok for sex, we made a date for one day this week.

That’s why this whole thing is so odd.  I can have sex with someone I already know, because I don’t have to worry about explaining the health stuff.  He already knows all about it.  It’s worse than the last time we saw each other, but it’s generally the same.  He understands and accepts it.  If I have to cancel, he’ll be ok with that.  If I have a problem while we’re together, he’ll support and comfort me.  But with someone new, I want to give a good impression.  Even if I tell her a bit about what’s going on (and I’ll probably have to,) I still don’t want her to think that it’s worse than it is, or even that it’s as bad as it is.  I want to act like I’m ok so I don’t scare her off.  And I’m just in no condition to act like I’m ok, even though a date should be physically easier than sex.

So many people don’t understand why I feel that I can’t date while I’m so ill, but it all comes down to that last part: I don’t feel up to acting like I’m ok.  It’s just not worth the effort.  Because even if I can manage to do it once, chances are, I won’t be able to do it a second time, and before the third date they’ll have to know everything.

With any luck, I’ll figure out a way to share enough of my problems with the lady from last night without scaring her off.  And in the meantime, sex with my ex may not be the smartest move ever, but a good tumble is not only great exercise, but it should also help relieve stress.  Chances are, I’ll feel better afterwards.  Now I just have to make sure I’m well enough this week, and that it happens again after this week too!  And I really, really hope that I can have a good date with that woman.  Please cross your fingers (figuratively – most of us can’t do that literally anyway) for me.

Another ridiculous media portrayal of disability making our lives worthwhile

December 17, 2012

I started this blog because I was sick and tired of hearing stories about how it’s so worth it to have X health problem because of all we learn from it and blah blah blah.  Yes, I have received a lot of insight and wisdom from my health problems.  And if I didn’t have my health problems I’m sure I’d have gotten that insight and wisdom from someplace else.  After all, healthy people find it.  And I’d gladly give up those “benefits” this instant if it meant I’d get my health back.  It just pisses me off when people suggest that it’s worth being sick because of all we learn from it.  If they want to say that’s true for them, I’m fine with that, but so often it’s suggested that this is true for everyone, and that’s just not the case.

In general I like the tv show Glee.  I started watching it because all of my queer friends were watching it, and they made it sounds much better than I would have expected a show about high school kids to be.  Mostly, they and I loved that it was so inclusive of our LGBT community.  This show covers difficult topics like bullying, domestic abuse, and eating disorders.  It also has characters from minorities that aren’t often seen on tv, and never so many in one show: gays, lesbians, bisexuals, a possibly (I think likely) transgender character, one with down syndrome, a student of mixed race, blacks, Asian-Americans, a Jew, an evangelical Christian, someone with OCD…. it’s really quite amazing.  And from the start, there as been Artie, who is in a wheelchair due to an injury sustained in a car accident that occurred some time in the past.

Tiny spoiler alert: What I say now gives away a tiny part of this past week’s show, aired December 13.  It does not in any way spoil the ongoing plots of the show.

In the first moments of last week’s episode, we see Artie looking and acting upset, with a bruise on his face, and we immediately learn that the janitor didn’t salt the ramp into the school and so he slid down it and fell out of his chair.  He was humiliated to have to wait for someone to come by and help him.  He says that he wishes he’d never been in that accident and ended up in his wheelchair.  This is where the It’s a Wonderful Life ripoff comes in.  Yes, that’s right – a student/spirit comes by to show Artie what life would be like if he’d never been in that accident.  Of course, everyone else is much worse off.  His friends are no longer his friends, some are being bullied, others haven’t graduated like they should have, a teacher has stayed in a bad marriage.  What’s more, it turns out that Artie is a jerk.  He’s one of the bullies.  People are miserable.  All because he was never paralyzed.

In the end, Artie must choose whether to stay in this new messed-up reality or to go back to being in the wheelchair.  Of course he chooses the chair.

Now obviously the ways in which everyone else’s lives are messed up is a bit far-fetched, but they need it to make the plot work, so let’s just go with that for now.  As always, though, there’s no mention of the people whose lives would be improved by that accident having never happened.  I bet his parents would be happier for not having gone through all of that stress.  And what about the other driver?  And maybe one day he helped a neighbor carry something heavy upstairs.  I bet there are all sorts of ways he could have helped people, or otherwise affected their lives in a positive way.

As for the idea that Artie was only a nice guy because of the accident, I have to object.  I’m not sure how old his character was when it happened, but I really have my doubts.  Still, it’s high school, so it’s very possible he fell in with the “wrong crowd” when he could walk, and that didn’t happen when he was in the wheelchair.  But there’s this suggestion that I see and hear so often that the illness/disability makes us better people.

I don’t know about you, but I’ve met some disabled people who are real assholes.  And I’ve met non-disabled, non-ill people who are really nice.  Funny how that works.  It turns out, you can be a great person AND be healthy!  You can be a jerk AND be disabled or ill.  Go figure!  (You get that that’s sarcasm, right?)

Finally, there’s this idea that Artie became such an amazing, selfless person simply by being in a wheelchair (I was going to write “by being paralyzed” but that’s really not the focus in the show, the focus is the chair) that he’s even willing to go back to being unable to walk for the rest of his life just to make everyone else’s lives better.  Sure, this makes his life better too because he gets his friends back, but my impression was that he did it mostly to help everyone else.  Because, you know, we ill and disabled people are always so selfless like that.

Actually, I’m a pretty selfless person.  I go out of my way to help others.  I was like that long before my health problems started.  And if I was told I’d get my health back but I had to personally hurt people, I wouldn’t do it.  But if I was given the chance to be healthy, and I knew it might hurt some people but help others, and I wasn’t directly responsible for changing reality, I’m guessing I’d go for Door #2: GOOD HEALTH.

Like I said, I enjoy this show and I really appreciate the way that they handle complicated and controversial topics that other shows avoid.  Overall, I think they do a good job.  I guess that’s why I was extra disappointed to see this initial part of the show, which once again reinforced the ridiculous, deluded idea that ill/disabled people are inherently “good” because they are ill/disabled and that they don’t mind being ill/disabled all that much because they know that it makes everyone’s lives better.  How are we ever going to get the respect we deserve as long as this message is being communicated to the masses?

Ignoring vs. succumbing: Yes, there’s another option

December 14, 2012

Lying in bed, unable to sleep at 4am because I couldn’t stop thinking about a lovely woman who is slowly dying, I found the Twitter hashtag #EverydayAbleism.  And then I had the kind of profoundly insightful moment that only happens at 4am when Anti-Ableismyou can’t sleep.  Obviously at 4am it wasn’t all that insightful.  Still, I wanted to share that with you here.

A hashtag in Twitter is a way to call out a word or phrase, and to group it with other posts containing the same group or phrase.  #EverydayAbleism is being used for people to give examples of ableism they encounter throughout the course of a normal day.  It is frustrating and disheartening to read these examples, but it is also encouraging and empowering to see so many people calling attention to these wrongs, in an effort to educate people to correct their behavior.

As I read, I thought about how some people are mean, nasty, selfish, hateful, inconsiderate, or just plain assholes.  There are other people who are stupid or ill-informed.  But then there are those who just don’t get it.  I think these people honestly believe that if someone has a chronic, life-altering condition, there are only two ways to handle it:

  1. Ignore the problem and get on with life.
  2. Give in to the problem and give up friends, family, job, hobbies, etc.  Live off government handouts.  Rarely leave the house.

I think there are people who really do believe that you must either live as if the problem didn’t exist or else let it consume you entirely.  These people have never lived with such health conditions themselves, so they can only go by their own experiences.  If they get a cold, they move on with life.  If they get the flu, they lie the couch for a week until they feel better.  To them, this is what illness entails.  There is no middle ground for them.

It is easy to assume that anyone who exhibits ableism is a jerk, but I think that there are some who simply don’t get it.  They can’t understand that an illness can affect your life without halting your life.  It may be a waste of time to try to educate the assholes, but maybe we can education the deluded?

A gluten-free dairy-free whoopie pie kind of day

December 13, 2012

I don’t believe in emotional eating, but that doesn’t mean that I don’t do it.

This is a difficult time.  My insurance appeal has been submitted and a response is due back within the next two and a half weeks.  The response could be that they need an extension, but it could also be a yay or nay on the whole thing.  My social security appeal is floating around out there somewhere, with no response deadline on it that I know of.  And worst of all, a close relative is dying a slow, painful, excruciating death, and there is nothing we can do about it.


I think that I handle stress fairly well.  I used to be rotten at dealing with stress, and when the doctor who diagnosed me with auto-immune illnesses told me to cut down my stress levels, I laughed.  I thought he was kidding.  Doesn’t everyone want to reduce their stress?  Does he really think it’s so easy?  But over the years I’ve learned that I absolutely must keep my stress down if I want to avoid flares and other problems, and I’ve done that pretty well.  Unfortunately, there are some stresses in life that just can’t be avoided.

I’ve been watching this relative die slowly over the past year.  A year ago it was bad.  Now it’s beyond words.  Even though it’s hard when she doesn’t recognize me, it’s worse when she’s lucid; it’s worse when she’s aware of how bad it is.  In her lucid moments, she has made it clear that she’s done, she wants to die now.  She’s past 90, with a terminal illness and no hope for recovery.  Her life-prolonging meds have been stopped.  Unfortunately, Massachusetts does not have a right-to-die law (and the ballot question for it narrowly failed last month) so there will be no peaceful end.  Instead, she is growing weaker and weaker.  Breathing is hard.  She has 24/7 care, but now that is not enough.  One person is no longer enough to get her to the bathroom, for example.  Before, one person could help her stand up, and she could balance while holding on to something while they pulled her pants down.  Now, she is not strong enough for that, and instead she must relieve herself in an adult diaper.  What way is this to end the life of a woman who was strong, independent, vivacious, and wise?

As I read the email with the latest updates today, I desperately wanted something sweet.  Normally I try to avoid emotional eating, but I let myself do it in extreme circumstances.  This is definitely extreme.  I haven’t bothered learning gluten-free baking yet, so there was nothing in my house.  I’d heard there were gluten-free bakeries in a town near me, so I went online and looked around, then I made a few phone calls to confirm.  I ended up at a bakery only 1/2 mile from another errand I was running.  I wound up with 2 gluten-free, dairy-free mini whoopie pies.  They are not the best I’ve ever had.  I had a gluten-free, dairy-free whoopie pie a couple of months ago that was much better, but that was in another state.  Still, the fat and sugar triggered those parts of my brain that made me feel a bit better.  They don’t fix things, but they sure do help.  I devoured 1/2 of the first whoopie pie while I sat in the car, then took my time eating more of it later.  Since I don’t eat sweets anymore, a little bit goes a long way.  Hopefully these will last a few days, because I don’t see my life getting any less stressful in the near future, especially as the family starts funeral preparations.

Sometimes life stucks.  Sometimes life is stressful.  Sometimes it all feels wrong.  For those times, thank goodness for whoopie pie.

Limbo sucks

December 10, 2012

I hate being in limbo.  I’m not talking about the game with the broom handle.  I’m not talking about religious limbo.  I’m talking about being stuck in life, with no control over the outcome of a situation or of when the outcome will even arrive.

There are small kinds of limbo, where I’m just being indecisive.  Should I cancel my plans for tonight?  I hem and haw and Limbocan’t decide, and then I get this email from a friend:

“I saw on Twitter that you’re in rough shape. Do you want to cancel/reschedule tonight?”

She sent that today.  Totally awesome.  That’s someone who gets it.  But I digress.

Right now I’m talking about the big kinds of limbo.  I like to plan.  We never know what will happen in life, but we can figure out different ways to handle possible situations, right?  So if I quit my job and it takes too long to get a new one, I can do temp work, or do consulting, or get a lower-paying job to handle it.  That was a situation I planned for several years ago.  I didn’t entirely have control over when I’d get the “right” job, but I had control over my responses to the situation.  Besides, I wasn’t totally without control – I knew that I could always take a lower-paying job if I needed to.  That was reassuring.

My current limbo is much more sucky.  I’m waiting for a decision on this damn insurance appeal, and until then I can’t do anything.  I can only make basic plans: if I lose, I’ll move in with my parents and if I win I’ll look for a cheaper place to live.  But I can’t apartment hunt yet.  I can’t start packing.  I don’t know if I’ll be able to afford to finish out my current lease.  I don’t know if I can afford to buy clothes or to go out with friends.  I don’t think my health is good enough to do part-time work or take a class yet, but even if it were, I’d worry about that messing up the appeal.  I can’t plan for a future career, because I have no idea when or if I’ll ever be able to work again.

Six months from now I’ll probably be living someplace else, but I can’t plan for it.  My health could be very different, but I can’t plan for it.  My financial situation will have been determined for the immediate future, but I can’t plan for it.

I’m stuck.  I’m sitting in limbo waiting for some unknown stranger to decide the direction my life will take.  And it sucks.

“A great doc, but you didn’t hear it from me”

December 6, 2012

Our medical system is seriously fucked up.  I’m sure this isn’t news to you (and if it is, you can start learning about it here and here.)  Now, I know that some parts of it work well.  I used my new health insurance for the first time today, and that was great.  But in so many other ways, it just doesn’t make any sense at all.

What do you think is the point of healthcare?  Personally, I think it is to maintain good health, and to achieve improved health when needed.  Unfortunately, healthcare here is a business, so to the people in control, it’s about making money.

I saw my rheumatologist today, and of course at one point we talked about how I need a new endocrinologist since my old one dumped me.  He didn’t like that I require so many expensive tests, so much effort, and so much insurance-related paperwork.  I asked my rheumatologist for her advice.  She confided in me that there were a few in her hospital system that I should stay away from, and she asked me not to tell anyone that she’d said that.  Ok, I get that.  She shouldn’t bad-mouth colleagues.  No problem.  I would never say a word.  No one should bad-mouth a colleague – it’s bad etiquette – but when it’s a matter of someone’s health, it’s worth it.  All good, right?

But then she considered things, and finally told me about a center at another hospital that specializes in thyroid work, which is what I need.  She said multiple times “but you didn’t hear it from me,” and I assured her that I would never let on.  If I thought that writing this would in any way haunt her, I’d never write a word of it.  The last thing I want is to hurt someone who has fought on my behalf many times, helped me immensely, and gone above and beyond.

So here’s why I’m upset: why should a doctor get in trouble for telling a patient about a treatment center that could help them?!?  Think about that.  She would get in trouble because she suggested that I go to a different hospital.  She is not telling me that her hospital sucks.  She is not telling me to leave her practice.  She is not treating me badly. On the contrary, her primary concern is my health, and for that reason she is suggesting that I see the practitioners who are most likely to help me improve my health.  Once again, her focus is on my health!

And that’s why our system is completely fucked up.  Because a doctor can get in trouble for helping a patient improve their health, if it means sending the patient (and therefore the patient’s money) to another center.  Wrong wrong wrong.

So while we’re at it, PLEASE let me know if you can recommend a good endocrinologist in the Boston area.  I will consider my rheumatologist’s suggestion, but I don’t know yet if that place will offer what I need, or if they’re taking new patients.  Please send any and all suggestions.  I need someone who does thyroid work, especially Hashimoto’s.  Thanks!

%d bloggers like this: