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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If you can relate to this, please pass it along and share the camaraderie!  Thanks!


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