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

Healthy sick vs. CI sick

January 5, 2012

I think that most of us with CIs respond to things differently than so-called “healthy” people do.  It’s only natural.

Yes, I still worry about the trivial things in life, but not like I used to.  And I was disappointed recently when my bloodwork came back normal – I really wanted them to find a problem so that we might have a course of treatment.  I’m guessing that a non-CI person would have been very happy to get “normal” results.

I think that getting a cold is the same thing.  Of course, physically some of us respond differently.  Back before my autoimmune issues were full-blown, a cold was just a cold.  Now, a cold can knock me completely off my feet for a week.  No matter what germs I get, usually at some point it turns into a chest cold and a head cold, and I have a fever too.  But it’s more than just the physical.

When non-CI folks get sick, many (of course not all) of them get so upset that it’s disrupting their life.  Yes, getting sick is inconvenient, but my CIs disrupt my life much more often than any cold does.  And I see a lot of non-CIs try to power through colds and such, acting as if they don’t have them.  First, I find this incredibly irritating  because they are going to work and running errands and riding the train…. and sharing their germs with the rest of us!  I hate that.  I am more than happy to acknowledge my body’s current weakness.  When I have a job I power through lesser pain and fatigue specifically so that when I’m sick and germy I can stay home and rest.  I don’t have enough sick time at work for everything, and I know to pick and choose my battles carefully.  Many non-CI folks have dozens of sick days built up, but still come to work, as if they are indispensable.  Get over yourself, we can get through the day without you.  Just like you can survive without me.

And then there are meds.  I know people who take pills for everything (where’s the moderation?) and those who think they shouldn’t need any meds at all.  I think there can be something in between, but I also know to be careful.  I am taking all of my prescriptions because I have to, even when I feel queasy.  If I don’t, the consequences would be… well, I don’t like to think about it.  But when I felt feverish yesterday and found myself sobbing on the bed for absolutely no reason, I took Tylenol.  It would be stupid not to.  But I called the pharmacist first to be sure there wouldn’t be problems taking it with my new med.  I see far too many people forget to do that.  Today I’ve been sniffling and sneezing since I woke up.  It’s not fun, but I’d rather let my body work out what it needs to than to load up on drugs.  That said, I’ll be taking Nyquil tonight, since I know that sleep is an important part of recovery (and I wouldn’t get any sleep at all the way I am.)  I guess what it comes down to is, the CIs have taught me how to listen to my body, and how to respond to it without overdoing anything.

Yeah, being sick sucks.  I’m not going to pretend that it doesn’t.  I’m on day three and it’s lousy.  I’m sick of watching the same few tv shows over and over (I only have basic cable) and my eyes are too watery to try and read.  I feel germy and lousy and am ready for it to be over.  But I won’t stress out over it, or worry about the things I’m missing, or try to push myself to do more than I’m ready to do.  This still isn’t as bad as a CI flare.  And I know that, unlike my CIs, it will go away.  And that is the best part of all.

Leave a Comment » | Decisions, Expectations, Medication, Raves, Unpredictable | Permalink
Posted by chronicrants

Ridiculously cautious optimism (a.k.a. Loving the little blue pills)

December 28, 2011

I love the little blue pills.  They’re like magic!

I really resisted when my rheumatologist wanted to prescribe a sleeping pill.  I’d tried sleeping pills (from a different doctor) before and I always felt drowsy the next day.  And the sleep wasn’t all that great.  They were just good for falling asleep when I was in a lot of pain.  Still, she insisted that I at least try these.  She prescribed the lowest dose and suggested that I start with half a pill.  She said that these are slow-acting, so instead of putting me to sleep, their job was to keep me asleep, and to give me some good sleep.  Well that sounded reasonable.  I had no trouble falling asleep, but I was waking up a lot.  I would only wake up for seconds at a time before falling asleep again, but I knew it was disruptive.  I woke up exhausted every morning.  So I picked up the little blue pills at the pharmacy, cut one in half, and gave it a chance.

Miraculous!  I woke up feeling good in the morning!  I’ve been taking half a pill every night for almost a week now and I feel almost like my old self.  I don’t have my full energy back, but I’m starting to see the light at the end of the tunnel.  Thank goodness!

This isn’t a long term solution.  I mean, it could be long term, but I refuse to take a sleeping pill every night unless it’s absolutely necessary.  Still, for now, it’s fantastic.  Hopefully it will allow me to gain back my old sleep habits.  But I’ll worry about the future later.  For now, I’m just so excited to not be fatigued all the time!

I am incredibly lucky.  This may last or it may not, but at least for now, I have a break from the fatigue.  I sincerely hope, with all my heart, that fellow fatigue sufferers will soon find some relief as well.  It has been one of my harder symptoms to handle.  I hope that one day soon it is better understood and that there are more treatments available.  We all deserve that.

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2 Comments | Medication, Raves, Symptoms | Permalink
Posted by chronicrants

Ode to my kick-ass coat

December 24, 2011

My winter coat rocks.  No, really.  It’s one of the best purchases I’ve ever made.  It may even be the best.

Think about it: how many items do you have that can directly improve your symptoms?  Yesterday I ate something that was great; the same dish made me incredibly sick the day before.  Good old IBS.

Last week I had fun picking up and holding my friends’ cat; today picking up that same cat hurt.  Good old connective tissue disease.

Two nights ago I slept for 7 hours and woke up feeling great; last night I slept for 8 hours and woke up feeling exhausted.  I took a 2 hour nap this afternoon and am still exhausted.  Good old autoimmune issues.

So what’s my point?  My point is that my wonderful coat protects me.  Today it was 28 degrees (F) when I left the house.  I have Raynaud’s.  This isn’t the worst of my problems, even when I don’t address it, but keeping in check can definitely help the other issues.  Luckily, I don’t have a severe version of it.  If I keep my core temperature warm, the rest isn’t as bad.

And this is where the coat comes in.  I have a “normal” wool coat that I wear when it’s in the 40s, and even in the upper 30s.  But when it gets below about 35 degrees, I pull out the monster down coat.  This thing is big.  It’s pink (oops – in the catalogue it looked red, but I wanted to wear it right away instead of exchanging it.)  I am short and this thing looks pretty silly on me.  A friend told me that I look like a big pink penguin; I wish she was wrong.  But it’s warm!  I can’t emphasize that enough.  Maybe I look silly, but I see people walking around with hunched shoulders, shivering, in coats that clearly aren’t good enough.  When I wear this thing, it feels like I’m wrapped in a sleeping bag, all warm and cozy.  As you can see, it zips high and has a big hood closure that covers and protects half of my face.  If I’m not driving, I always put my hands in the pockets without gloves and they stay perfectly warm.  I haven’t found a pair of gloves yet that comes close to working as well for my hands as those pockets.  With some good boots keeping my feet warm, the Raynaud’s stays at bay and I feel perfectly comfortable.  It’s wonderful!

Several years ago I spent approximately $120 for this amazing coat and it was worth every single penny.  If you live in a cold place and you can afford it, go out and get the best coat you can – it’s worth it.  You may look silly, but you’ll be warm!

If any of this sounds familiar, if you can relate, please share it on Facebook, Twitter, etc. This blog is new, and it would be great to share it.

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2 Comments | Decisions, Expectations, Medication, Raves, Symptoms | Permalink
Posted by chronicrants

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