Raising the bar on thoughtfulness

January 31, 2012

With all the shit forced on us all from CIs, sometimes a little thoughtfulness can go a really long way.

A close friend of mine had a baby about a week ago.  Leading up to the birth, I was so excited that she joked that her mother was the only person more excited than I was.  It was an exciting birth, but everything went smoothly and they’re all happy, healthy, and at home.

Unfortunately, the timing wasn’t great for me to visit – I had family flying in from all over the country just a few days after the birth, all coming to attend a bit family event this past weekend, so I had to delay my visit.  Finally, the day was approaching.  She lives two hours away.  Normally I visit for a few days at a time, but when her first child was born, I drove out for just a few hours, then drove home.  That was a very long day.  It was a Saturday, and I rested the next day and then went to work on Monday.  It was exhausting.  I did the same with her second child.

This time around I’m not working, but since I’m not feeling well, it will probably be more exhausting than the other visits.  Still, I can’t wait to meet the little guy!

Then yesterday my friend called – the older kids have colds.  The colds aren’t bad, but she wanted to warn me.  How thoughtful is that?!?  She’s juggling two little kids and a newborn infant, and she’s worried about my crappy immune system.  She’s just so sweet.

We’ve been friends for ages, since back when my only symptom was pain (ah, the good ole days), and so she understands better than most what I deal with, even though I hide a lot from the world (not just from her.)  And she knows that it’s not just about me being in a germy house – with little kids around, the germs spread more, and there’s no way I’ll visit without hugging the kids and playing with them.

It’s an easy solution – we’re just putting off the visit for a few days, to make sure everyone is healthy (oh, the torture of having to wait to see the little baby!)  But I know too many people who don’t think that way.  I see people shake hands when they have colds, cough into hands and then touch doorknobs, and generally be inconsiderate to the world around them.

How lucky am I to have a friend who is this thoughtful?  We all need to have someone in our lives like this.  She’s certainly set the bar pretty high for everyone else…..

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If you think it’s so easy, then *you* try it!

January 30, 2012

What is it with people saying that what I have to do really isn’t so bad?  Unless you’ve gone through it yourself, you just don’t get to say that.

The latest is that I think I need to try a gluten-free diet.  I’ve been putting this off, but from what I’ve researched, it’s worth a try.  Nothing else is working, after all.  I figure I’ll live it up for a couple more weeks, until I see my PCP for a checkup, and then I’ll talk to her about getting a referral for a nutritionist, because I sure as hell am not doing this myself.

I was telling all of this to a friend, and she said that getting a nutritionist is good, but that really, going gluten-free isn’t all that hard.  Now, we’ve been friends for ages and I love her, and I know she can be a bit know-it-all, but that’s just who she is and I accept it.  But today was annoying.  Going gluten-free is a big, big deal for me.  I have such a restricted diet already, and this will make it harder.  Cooking at home will be a pain in the ass.  Even worse, going out to eat will be horrible.  Yes, there are dishes at restaurants that appear to not have gluten-containing ingredients, but if they aren’t marked “gluten free” then they could be contaminated.  She didn’t get it.  And what about eating at other people’s homes?  When I go to a party, I can avoid the bowl of chips, and I can ignore the cheese and crackers, but what about main dishes?  Will I have to eat at home before every party?  Ok, I do that now from time to time, just in case, but to always do it?

Now, I know there are plenty of people on gluten-free diets.  I know they are successful at them.  I am not saying that it can’t be done.  I’m just saying that, especially at the beginning, it will be very difficult, and I resent being told that it won’t be by someone who’s never done it.

It’s like when someone tells you how to compensate for not being able to do stairs, even though they’ve never been in that position.  You can’t say it’s not hard unless you’ve done it yourself, and even then you can’t assume that your experience applies to everyone else.  We’re all different.

So I’m being patient, because I love my friend and I know that she only means well.  She’s trying to help.  But damn, it can get annoying to hear that kind of stuff.

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The blue moon effect

January 26, 2012

I try not to swear too much on here, but this week is so crazy!  What the fuck is going on this week?!?

Where to begin?  A friend just had a root canal.  A relative is having oral surgery that’s even worse than a root canal.  A friend’s kitten is dying.  A relative of a relative passed away.  A friend had a miscarriage.  A friend had a baby.  A friend got laid off.  A friend got married.  And that’s not to mention my own medication side effects and, even worse, my grandmother’s sudden trip to the hospital (she’s ok now, but she almost didn’t make it.)

So I’m thinking it’s something like a full moon, or maybe a blue moon, and an eclipse, and the stars all lining up in some weird way…. I don’t know.  It’s just too strange, though.  How is it that so many of the major people in my life are having major life events this week?

Now here’s the strangest part of all.  This is the CI-related part.  This is the part that I can’t get used to.


Now, don’t get me wrong, I’m thrilled that everyone cares.  But when a friend calls up, as she did about 45 minutes ago, and says in a pain-filled and drug-filled voice that she just had a root canal, but then keeps asking how I’m feeling, something must be wrong.  When my mother calls me after a night of crying at her mother’s hospital bedside and asks how I’m feeling, something must be wrong.  And when a friend calls up to tell me that she had a baby about 16 hours ago, and wants to know how I’m feeling, something must be wrong.

So now I have to wonder, does their own stress cause them to think more about me, or have I declined in some way that I’m not seeing, and it concerns them?  I appreciate their concern, but these are events that should have me focused on them, not the other way around.

How can I get them to stop worrying about me?  Maybe it’s not possible.  But I’m going to try, because I’ll be damned if my ongoing health issues are the center of attention all the time.  Sometimes, yes.  All the time, not a chance.  This is a time to focus on my friends and family.  Screw the blue moon eclipse thingy.

But I’m starting to wonder… what news will the next phone call bring?


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Adding insult to injury

January 25, 2012

My family has always been close.  Sure, there’s the occasional outlier, but generally we’re all there for each other.  We take care of each other.  And that’s what made yesterday and today so difficult.

In the middle of the night Monday, my grandmother was taken to the hospital.  She lives near me in the Boston area, and so do two of her children, my mother and an aunt.  My mother and my aunt took care of my grandparents yesterday, staying with my grandmother and taking my grandfather home to get some rest, then back to the hospital for another visit.  No one had gotten much sleep the night before.  My aunt slept at my grandparents’ apartment yesterday so that my grandfather wouldn’t be alone.  My  mother “slept” (but really didn’t get any sleep) on a cot in my grandmother’s hospital room.  I stayed home.

I want to be there, to spend time with them, to help, but I can’t simply because my immune system sucks.  There are too many germs in the hospital.  Norovirus is going around, and they have a case of pneumonia there too.  Even my sick grandmother told me it wasn’t safe for me at the hospital!  I wanted to argue, but the truth is, they’re right!

It’s bad enough when I can’t take care of someone because I don’t feel up to it, but this time I actually felt ok and I still couldn’t help.  I’m pissed off!  It sucks when I feel lousy, but then it has to intrude on my ability to help others?  That’s just so wrong!  I’m glad there is other family around to help out in times like these, but I should have been able to help too.  I’m lousy at handling my limitations.  I know that.  But this is just going too far.

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Suffering symptoms vs. stepping into side effects

January 23, 2012

I thought Thursday’s fall was bad, but I had no idea what my body was really in for.

On Thursday, before the fall, I had finally had the big appointment with my rheumatologist.  Even though we didn’t have any solutions, I felt much better afterwards.  She reminded me that I’ve had a lot of ups and downs over the years, and that my memory was a bit clouded; yes, I’d been just as bad off as this before, sometimes worse.  And while it wasn’t necessarily a solution, we did have a course of action: a new med.  This was an anti-depressant that’s sometimes used for these kinds of illnesses.  It can help with fatigue and with arthritic pain.  Sure, there are some severe potential side effects (like suicide!) but we decided to try it.

Boy was I unprepared!  Within a few hours I was really hot and my skin was tingling.  My heart was racing.  I had diarrhea.  And then I was vomiting like I never have in my entire life.  This was bad!  Luckily, I had a friend visiting and she insisted on staying all day, until I felt better and went to bed for the night.  Thankfully, the worst of it only lasted a couple of hours.

Now, obviously I knew this was bad, but I didn’t realize how bad it was until I heard my doctor’s concern today, and then heard her shock when I said I’d only taken one dose.  She had prescribed the lowest dose they make.  This was considered a very severe reaction.  So the question is, should I try a different type of anti-depressant?

For a less severe reaction, of course the answer would be yes.  The funny thing is, I was willing to risk it, but my doctor wants to exhaust all other options first.  Now, I don’t really want to go through that horrible experience again, but it was only a few hours, and isn’t it worth it if the drug might actually work and help me?  Like I said before, the options are lousy, but they’re all we have.  Just because the side effects suck doesn’t mean they’re necessarily worse than the symptoms that the meds are trying to fix.

It happens all the time, and for me it’s happening again: symptoms vs. side effects.  What a rotten choice.

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Recoloring the winter blues

January 20, 2012

This weeks’ ChronicBabe blog carnival is all about winter wellness and fitness and surviving the winter blues.  It’s a fantastic idea, since so many of us struggle at this time of year, and even those who don’t could probably use some encouragement and ideas.  Here are a few of my own experiences….

Winter is my best season and my worst season.  It’s the easiest and it’s the hardest.  Health-wise, it’s all sorts of contradictory.

On the one hand, a lot of my symptoms are triggered by hot and humid weather, so the cold winter is a welcome relief.  Others cringe at 30 degree weather, but I actually don’t mind it (but I can do without the 5 degree weather, thanks anyway.)  On the other hand, it’s dark, and even when it’s light out the sun is lower (less direct sunlight) and my skin isn’t getting much exposure since it’s all covered up in layers of warm clothing.  So I have fewer autoimmune symptoms, but then seasonal affective disorder (SAD) comes and rears it’s ugly head.  Plus, with snow and ice, I worry a lot about falling.

This has been an unusually easy winter in Boston.  Until last week, we had almost no snow.  This has to be some kind of record.  We’ve all been walking around confused, wondering where our winter went.  In fact, until a few weeks ago, it was unseasonably warm.  We’ve had 50 degree days.  We’ve had rain.  Best of all, we’ve had clear sidewalks!  I didn’t have to worry about slipping at all, so I was able to take a bunch of long walks, which is my best and safest form of exercise these days.  The key is dressing right: warm sweater, warm pants, super warm coat, and of course hat, gloves, and scarf.  And don’t be afraid to wear long underwear if you need it.

My motto is, it doesn’t matter how I look as long as I’m warm.  I have to say that in order to be able to wear the big pink coat in public.  I have Raynaud’s, so I’m careful to keep my core warm so that my hands and feet don’t get too cold (but honestly, they do anyway unless I wear the right boots and gloves.)  If I’m dressed well like this, I can take a half hour walk, and my big problem is that partway through I’ll be sweating.  It’s all about dressing right, and staying indoors when it’s dangerously cold.

Until the sidewalks are clear I won’t be taking long walks on them if I can help it.  I’ll wear my amazing boots with the fantastic treads, which are also super warm (even my toes stay warm in the coldest weather!) and I highly recommend them, but I’m still too nervous about slipping.  If I can hit my head in my own living room, (and I’m still hurting from that one) I better be extra careful on the ice.  There are alternatives, though.  There’s walking in a mall, walking through a museum, walking on a treadmill (boring, but it gets the job done) and plenty of other indoor walking possibilities.  One winter I did exercise videos in my living room.  They’re walking programs that involve additional movements (kicks, arm swings, etc.)  But when there’s no other choice, I’ll walk outdoors in my good boots and with a lot of care.

The thing is, I’m not big on exercise.  I’m really a couch potato by nature, but I know it’s good for me.  I feel better physically.  And it helps the SAD.  Being outside during the day is huge, even on cloudy days.  Fresh air and a little sunshine go a long way.  I won’t pretend it fixes everything, but I have noticed that I’m happier and more energized on the days that I take a walk outside.  The only other things I’ve found for the SAD are a light box and reminding myself that it’s temporary.  Already the days are getting longer, and I look outside most evenings and celebrate that it’s still light out at 4:45.  Those bits of appreciation really do help.

Each season can come with it’s own problems, but there are often workarounds.  The trick is to find them.  I wish well finding yours.

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Coffee table: 2, me: 0

January 19, 2012

Today was incredibly eventful.  I have a lot to write about.  And I won’t write about any of it.  Maybe tomorrow.  You see, I’m a bit distracted by the dull ache at the back of my head.

I was having an unusually productive afternoon.  I had to take a quick bathroom break, and my mind was churning as I got up to walk across the living room.  Unfortunately, that meant that I forgot to put on my slippers.  I also forgot that earlier in the day the hardwood floors had been slippery for some unknown reason (but probably from some work the super was doing in my apartment a few hours earlier.)

In my socks-clad feed, I walked across the living room, in the direction of the bathroom, still thinking about the project I had been working on.  Suddenly I felt my legs in the air.  There was a pain in my leg.  Then I realized that I was going to hit my head… and there was nothing I could do.  A second later I was on the floor.  I heard a scream; I supposed it came from me.  I waited to see if anyone came.  They didn’t.  My neighbors were probably at work at that time of day.  Shit.  I held my hand to my head for a long time.  I checked my leg – scraped skin but no blood.  I’ve bled from hitting that coffee table before.  And this time my head hit it.  I finally forced myself to look at my hand… no blood!  Whew!

I knew someone should check my head, and I’ll be damned if I go to the emergency room for anything less than an emergency.  I did not lose consciousness, the dizziness only lasted a few seconds, and I wasn’t bleeding.  Nope, no hospital for me.  But I had a wicked headache.  (Yes, in Boston we say “wicked.”  Get over it.)  So I did the logical thing: I called the super.  He’s a nice guy, very sweet, and we chat a lot.  Obviously, this was not in his job description at all, but he came running right up, the sweetheart that he is.  He found my scalp, and said there was just a small bruise.  He thought to take a picture of it with my cell phone (gee, why hadn’t I thought of that?  I must have been really dazed) and I saw that it really was just a small bruise.  No blood.  Nothing too horrible-looking.

A few ice packs later and both my leg and my head hurt.  A lot.  Tylenol helped.  But tomorrow will be the real test.  So yes, I’m a bit distracted by the dull ache at the back of my head.  On the bright side, I’m not focusing on my big doctor appointment this morning.

Time to ignore it all with the brain equivalent of ice cream: tv!  And more Tylenol.  Definitely more Tylenol (or whatever the CVS equivalent is.)  Sweet dreams y’all!

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