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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Leave a Comment » | Decisions, Educating, Expectations, Frustration, Medication, Pain, Rants, Symptoms, Unpredictable | Permalink
Posted by chronicrants

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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2 Comments | Expectations, Frustration, Isolation, Limitations, Symptoms, Unpredictable | Permalink
Posted by chronicrants

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!

Leave a Comment » | Isolation, Kindness, Pain, Rants, Symptoms, Unpredictable | Permalink
Posted by chronicrants

The fog of too many possible causes

January 18, 2012

Some possible sources of my fatigue: PCOS, side effect from meds, hypothyroid, low iron, chronic pain, connective tissue disease, some unknown cause.  Gee, that really clears it up, doesn’t it? [insert needed sarcasm emoticon here]

I’ve been depressed lately.  It’s frustrating.  I’ve been depressed before, so I know what to watch for, and it’s not extreme right now – I’m not suicidal or anything.  I’m just in a long-lasting funk.  It’s come and gone recently, especially over the last few weeks.

I’ve been worrying about my future.  What if I can’t go back to work?  How will I make ends meet?  I’ve looked at apartment listings online. I could save money by moving to the suburbs.  I could save more by moving out of state.  A 3-bedroom house in Boulder rents for less than my not-at-all-fancy 1 bedroom apartment near Boston.  But moving away from my support system, my family, my friends, my doctors, my home?  I’m just not ready for that, even though the climate here is lousy for me.

These are very legitimate concerns, especially as my back-to-work followup with my rheumatologist is approaching, even though I’m obviously not back to work yet.  I know that I’m thinking things through rationally.  I’m worried, but not over-worried.  I’m bored, but managing to mostly stay busy.  I’m frustrated, but that’s nothing new.  So why am I feeling this way?  It doesn’t make sense!

Today I felt great.  I felt uplifted as soon as I got out of bed, which was odd, since I’d woken up early from odd and scary dreams.  Still, once I got up I felt really good.  Why was today different?  I thought that if I could figure out why I felt so good today, I could replicate it.  Sounds reasonable, right?

As I thought about it while walking outside, feeling especially good, it hit me all at once, really hard.  DUH!!!  It’s sunny out today!  We’ve had a lot of gray weather, and today is sunny!  I feel like such a moron.  Ironically, because I was depressed and focused so much on a few specific areas of my life, I completely forgot to watch for my seasonal affective disorder, which seems to have been the cause of the depression.  Now let’s be honest, I’m probably experiencing some depression from everything I’ve been going through lately, but I think that is at a level that I’m comfortable with.  It’s when it started getting worse (as the days got more overcast) that I got worried.  And now I’ve finally figured out what was going on.

One of the difficult things about these illnesses is that any given symptom can have many possible causes.  It’s so hard to keep track of the possibilities, and when we lose track, it can be disorienting.  I’m grateful to have figured out where this one symptom seems to be coming from, but what about the other symptoms?  What about the other people who can’t trace theirs?  There’s so much work to be done.  I hope it happens sooner rather than later.  In the meantime, I’ll be watching the weather forecast and hoping for more sunny days soon.

Leave a Comment » | Expectations, Frustration, Isolation, Job, Limitations, Rants, Symptoms, Unpredictable | Permalink
Posted by chronicrants

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