Being treated like a child

March 30, 2012

“Remember, you don’t have to bring anything to the brunch.  No food, no flowers, just save your money and take care of yourself.”

I know my mother means well.  Her instinct is to take care of me.  But I’m getting sick of it.  And it’s not just her.

I appreciate that people want to help.  I really do.  It’s sweet.  But I’m an adult, and if I say that I want to bring something to a family brunch, then why stop me?  Everyone else is bringing something.  If I didn’t feel up to it then I wouldn’t offer, but if I want to contribute, why stop me?  A few years ago this made sense – my cooking was atrocious.  But now I can cook and I’ve been bringing food to potlucks for many years.  And hell, I can at least put together a fruit salad!  Either way, I can make a contribution.

What bothers me most, I suppose, is that people don’t trust my judgement.  I say I can do something, and they still want to protect me. It’s nice when people want to help, but it’s demeaning when they go too far.

So tomorrow I will have a little chat with my mother and I’ll try to explain this.  I will point out that she isn’t trying to stop my younger sister from bringing food, so why try to stop me?  I’m capable of it, so it’s my choice.  I just hope she understands and can fight her motherly instinct.

After all, I’m not a child anymore.

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Considering a move

March 28, 2012

I’ve said it before and I’ll say it again: Boston’s weather sucks.

At least, it sucks for me.  In the winter my seasonal affective disorder (SAD) acts up.  In the summer, my autoimmune issues go wild.  Spring and fall are great, but they’re too short for my body.  And last summer pushed me to the edge.  I even looked for an apartment with central air conditioning.  I still wouldn’t have been able to go out much, but at least I would have felt better when I was indoors.  Unfortunately, anything close to the city was out of my price range.  I’ve known for years that one day I’d need to move out of Boston, to someplace that was healthier for me, but I’ve resisted.  My family and friends are here.  This is my home.

But recently some things have shifted.  I’ve been thinking more and more lately about moving.  There’s a lot in my life that I’m not thrilled with now, and I’d love a fresh start.  It’s not that anything is wrong really, it’s just that things are a bit stagnant.  I need to make changes, and I don’t think I can make them here.  And when I think about it, I’d love to try going someplace where the people are friendlier and the costs are cheaper.  And mostly I want to be someplace where I feel better.

So these thoughts have been going through my mind for a while, and then two big things happened last week.  First, we had two days of 80 degree weather.  That is not normal for March.  The temp was bad enough, but the dew point rose too – it was 56 and that’s close to my breaking point.  At 58 degrees I start having real problems.  So I felt really horrible.  And it’s only March.  Of course, this is New England, so yesterday it was 45 degrees and this morning there were flurries.  But this summer will be hot and humid, no doubt about it.

The other thing that happened last week is that a friend told me they were moving out of state.  My first reaction was to be sad they were leaving, but my second reaction was jealousy.  I was incredibly jealous that they were moving away.  Hmm, that’s not the usual reaction.  Maybe that’s telling me something.  Or trying to, anyway.

Last night I had dinner with them, and we talked a lot about it.  They’re moving back to the area he’s from.  They visit a lot and they have friends there, so they know the area and what they’re getting into, which is more than I’d have.  And they’re a couple, so they’ll have each other when they move, which is also more than I’d have.  But we talked about the desire to make changes, to start over, to reboot.  We talked about how exciting it will be to go someplace new (he’s lived here almost 30 years now, so it’ll be sort of new for him, and she’s never lived there.)  They showed me some rental listings they’re finding and the different neighborhoods they’re considering.  She’s on social security disability, so her money will go a lot farther there.  He works but doesn’t have a job in the new place yet.  Still, even if he takes a pay cut, they’ll be doing well.  So in less than two months, they’re going off on their new adventure and I’m incredibly jealous.

My landlord sent me my lease renewal today and I’m actually hesitant to sign it.  I’ll have to sign, because even if I move it won’t be before the renewal date, but I’m wondering if I’ll really be here another year.  I’d hate to leave my family and my friends, but I can’t stay here just for them.  And some of them have been moving away lately.  I need to go live my life whereever.  And it’s not like it’s necessarily permanent – I can always come back!  And of course I’ll be visiting as much as I can.

So now I’m trying to figure out where on earth I can live.  I have a lot of criteria (nice people, great healthcare, possible employment, etc.) but I have one that I have to filter everything else through: the weather.  Somehow I have to find a place with cooler summers for the autoimmune stuff and that also has a lot of sun, even in the winter, for the SAD.  Now that’s a challenge!  I was thinking about Portland, OR, but it’s too grey in the winter.  And there’s southern California, but I’ve already tried it and I wasn’t a fan.  DC/Baltimore is too hot and humid in the summer.  San Francisco is expensive and hilly (my poor knees couldn’t manage the hills.)  So I’m feeling at a bit of a loss.  I’m thinking about Denver or Boulder maybe.  Perhaps some other towns in CA.  But I really don’t know yet.  Those are places I haven’t visited yet, and I can’t consider anyplace seriously until I visit.  But suggestions are welcome!  (It has to be in the U.S. – I don’t have any way to get a work visa anyplace else.)

It’s exciting to thinking about starting something new.  And it’s exciting to imagine living in a place where I can go outside year-round without feeling completely lousy.  That would be amazing!  Who knows, maybe a year from now I’ll be writing from someplace completely different.  And until then, I’ll be dreaming and planning and exploring.  And that’s exciting in itself.

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Baby steps: learning to stand, walk, and sit at age 32

March 26, 2012

It’s a natural progression: babies learn to roll over, then to crawl, then to stand, then to walk.  Easy, right?  Apparently not.

A couple years ago I was in physical therapy, having knotted muscles worked on, when my physical therapist decided I was ready for the next step: learning to stand.  Now, I’d been standing for years.  Sure, I never crawled, but I did go through all of those other stages, and I knew how to stand.  Yeah, it was painful to stand for more than a minute or so, but it’s not like I didn’t know how to do it.  Well, apparently I didn’t.

It turns out I’d been standing wrong my entire life!  I was putting my weight on the wrong part of my feet and that was throwing everything off!  This was quite a shock.  So I started working on how to stand and walk.  And it turns out I needed to work on sitting too – I was sitting on the wrong part of my ass.  This sounds like a joke to some people, but I swear it’s the truth.  Some of you may even be dealing with the same problem.

Eventually I “graduated” enough that I could work on the exercises at home.  I made some progress, but then the fatigue hit me last year and I stopped doing my exercises altogether.  So now I’m back in PT, trying to regain what I’ve lost.  And today, we worked once again on how to stand properly.  It’s infuriating to have to think about how I’m standing!  Then she had me walk around the room, and I had to think about how to do that too!

I’m perfectly happy to do this, of course, if it works.  I just really hope it works!  And in the meantime, I feel like a one-year-old all over again.

Head up, chin down, belly in, hips even, weight on heel, and…. go!

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Rheumatology rock star

March 24, 2012

My rheumatologist is fantastic!  She sets the gold standard for medical care.  She went above and beyond yesterday!

I am very picky about doctors.  Actually, that’s a huge understatement.  I’ve received a lot of poor care over the years.  There was the pediatric surgeon with no compassion.  There was the internist who lied and told me a certain test didn’t exist even though it did.  There were the several who ignored my theories of what was happening with my body (and it turns out I was right.)  There were the many who simply wouldn’t admit when they didn’t have an answer.  That’s one of my biggest criteria: every doctor I see must be willing to admit ignorance when it’s warranted.  My standards are high, and I won’t accept inferior treatment any more.

At my first appointment with this rheumatologist, I told her early on that I understood that my condition didn’t have a particular name and that I was ok with that.  She looked downright relieved, then told me how it can take patients many years to accept that.  She was glad we could move on and focus on treatments.  I knew then that I liked her.  She understood.

Over the last several years she has been helpful and caring.  She only works three days a week, but if I leave a message with an urgent situation, she’ll call me back on her days off.  She’ll call me at 7pm if she’s been with patients all day.  I can always trust that she’ll call.  When I need to be seen and her schedule is booked, she always finds a way to squeeze me in.  She tells me when she doesn’t know what to do.  She’ll ask what I want to do.  She listens to my thoughts and theories and takes me seriously.  She trusts my assessment of my body, but conducts her own assessment as well.  I can actually trust her.  That’s not something I do easily.  And, of course, she’s good at what she does.  She’s knowledgeable.  She’s worked with other patients with my unique rheumatological situation.  If I ask her about something she’s not completely familiar with, she researches it and gets back to me.

But this week she really outdid herself.  I was blown away!  I’ve been on edge about signing up for disability insurance.  To make matters worse, there will be a big gap between short term and long term disability.  This is mostly because I got the paperwork for the insurance application on the first day of my rheumatologist’s 10 day vacation.  She’d told me she was going on vacation, but I didn’t realize what the timing of the paperwork would be.  Well, there was nothing I could do.  I sent her the forms, along with a note about the timing, asking that she not wait until our next appointment to fill it out.  I know how hectic things are after a vacation, but she’s been so responsive that I hoped she might do it within a week of getting back.  Boy was I wrong!

She got back from vacation on Thursday.  Early Friday morning she responded to my email and asked if she could call me later in the day to discuss the forms.  She called at the exact time she had said and then filled out the forms while we were on the phone!  She told me what she was writing and asked me questions about the various sections.  She told me she wanted to get it done right away because of my timing issue, then she apologized for not calling the day before!  She said she had to spend that first day catching up from vacation, which of course I understood!  Plus, we had a temperature and humidity spike last week, so I’m guessing that many of her patients were calling.  This paperwork is important to me, and I’m nervous about it, but I never expected her to do it on her second day back!  Her forms will get to the insurance company before mine!  (She faxed hers and I have to mail mine.)

I’m not thrilled with my endocrinologist right now, and I need a new gastroenterologist, and I might need to see a neurologist, and I’m not crazy about my PCP, but thank goodness that the one doctor I rely on the most, the one who provides so much of my care, is so fantastic!  I wish I could find more like her.  I wish we all could!

Good luck to you all in your search for good doctors.  Let’s hope there are plenty more like this one.  We all deserve them.

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Springing past winter into summer

March 21, 2012

I don’t care what your views are on climate change, you have to admit that this has been a very odd winter in Boston.  In my entire life, I’ve never seen a winter like this, and people twice my age are saying the same thing.  We only had two snowfalls worth shoveling, and even those were measured in inches, not feet.  They even melted within a few days.

Wondering what a normal Boston winter is like?  I took this picture in January 2005.  Yeah, exactly.  And this winter?  This winter we hardly had any snow at all.  We saw clear pavement and grass almost the entire winter.  Other parts of Mass. got real snow, but not us.

Most people loved this.  To be honest, I enjoyed it too.  We still had some cold weather, but I don’t mind bundling up in my extra warm coat.  The great part was not having to worry about shoveling out my car or slipping on the ice – because there wasn’t any!  Woo hoo!  I loved not having to worry about my footing (at least, not any more than usual.)

And now I’m starting to pay the price.  When I was a kid in the 1980s, spring started in March.  I used to think I had imagined that, but then I came across an old home video dated March 1986 or so, and sure enough, we kids were outside playing in pants and t-shirts – and no coats.  But then in the ’90s we started getting snow through March and into April, and that became the new norm.  We hearty Bostonians grumpily adjusted to spring starting in April, or even in May.

Today, March 21, it was 80 degrees.  I knew there was a problem within a minute of getting out of bed.  It took me a minute to figure it out.  It was early, so the temp wasn’t too high yet.  And then I realized: the dew point.  I went online and, sure enough, the dew point was 58!  That’s  too high!  At 58 I’m generally already having flares of pain, fatigue, and GI issues.  At 60 I turn on the a/c and avoid leaving the house.  But the a/c isn’t in the window yet, it’s still in the basement, because it’s fucking March!  It’s still winter!

Needless to say, this wasn’t my best day.  It wasn’t the worst, though.  I quickly closed all of my windows this morning and pulled down the shades, and the apartment actually stayed fairly cool.  Too bad that won’t work through the summer.  And I used a/c in the car.  And I drank a lot of water.  Hello Spring.

Mother Nature threw us all for a loop and there’s nothing we can do about it.  I’m glad that in a couple more days the temps will drop 20 degrees.  Everyone else has been going on and on about how fabulous the weather was today, and they couldn’t understand why I didn’t agree.  I guess you’d have to be in a body like mine to understand that.  Personally, I’m looking forward to fall already, to those beautifully crisp autumn days.  Until then, I’m grateful for air conditioners and fans!

 

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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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Some chronic illness benefits of sex

March 19, 2012

Please excuse my absence.  First I was busy feeling sick, then I was busy having sex.  Guess which was better?

Sex is a very controversial topic in some parts of our culture.  At the moment, some politicians are saying that women should only have sex for purposes of procreation.  They say that women who use birth control are sluts and that women who have abortions are murderers.  Since I plan to never have children, I suppose that means that according to them I should not have sex until after menopause.  If you don’t know what I’m talking about, pick up just about any American newspaper.  The stories are hard to miss.

Luckily I don’t believe in any of that.  I’m a fan of sex, and I use birth control.  If that bothers you, you should stop reading now.

I have heard, read, and been told that sex can help many of my symptoms.*  More than that, I’ve experienced it.  A few years back I
was seeing someone, and I would sometimes call him up, tell him I felt lousy, and say I wanted to come over for sex.  It was fantastic.  And it worked.  Sex is a great form of exercise.  Muscles are used in ways that we might not normally use them.  It’s a great cardio workout.  It’s a stress reliever.  It can lead to better sleep.  And who doesn’t love a rush of endorphins?*

Now, this doesn’t work for everyone.  And of course there are limitations.  We must be careful of STDs and pregnancy (or just STDs, if you’re having same sex sex, one partner is a woman past menopause, you’re having oral sex, you’re having anal sex, at least one partner is infertile, etc.)  It’s always important to be with someone you trust, but I think that’s the case even more so when health issues are involved.  If pain is a problem, then it’s important to not exacerbate the pain.  And of course it’s crucial to listen to our bodies and to stop or make adjustments if necessary so that we don’t injure ourselves or cause other problems.

Sex is a rarity for me these days.  I do not enter into sexual relationships casually, and so I sometimes go for many months without sex.  In fact, it had been so long that I had forgotten just how helpful sex can be for me.  Of course there are the obvious reasons why I enjoy sex.  It’s just that there are also additional benefits.  For me, the timing was especially fortuitous since I was having a bad flare last week.  In fact, I didn’t think I would feel well enough to have sex.  Thankfully, I just barely felt up to it, and my partner understands my health conditions well and was willing to stop at any point, do most of the work, and be careful of my painful joints.  Having a partner like that makes all the difference.

Now I’m well rested (I slept great after each time!), less depressed, and in less pain.  I can feel that I got a great workout.  And as an additional benefit, I feel great about my body.  (Personally, I always feel especially sexy after sex.)

I’m not about to go off my meds or give up my new diet, but it’s great to know that I have the option of a fun additional treatment: SEX!

*I am not a doctor or a medical professional.  I am writing about my own experiences and about those of people I know or have read about.  If you think that this may help you, please seek advice from a medical professional.

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