Communicate, people!

February 1, 2012

Many years back I created a family medical history chart.  I sent a spreadsheet around to the family listing all known family illnesses, and asked each person to fill it in, adding additional illnesses as needed.  I filled it out for my grandparents.

As it turns out, this was a brilliant idea!  Everyone loved it!  They all filled it out right away.  I compiled everything, then split it, making one spreadsheet for my mother’s side of the family and a separate one for my father’s side of the family.  I sent the appropriate spreadsheet to the appropriate people, and suddenly we all had a comprehensive family medical history!  I still bring this with me to medical appointments.  I recommend that everyone do this.

The problem is that it’s very outdated.  I tried to update it years ago, and no one was interested.  Of course, this only works if people update it.

I guess it makes sense, then, that I didn’t know about my aunt’s hypothyroid.  I got tested for hypothyroid many, many times over many, many years.  Then they changed the “normal” standards, and suddenly the same test results that were considered “normal” were now considered hypothyroid!  I started taking meds, adjusting them a bunch of times over the years, and figured this was the least of my problems.  (I was very wrong about that, but that’s a subject for another post.)  Last year my doctor decided to test my thyroid antibodies for the first time.  It amazes me that no one thought to do that before.  I got diagnosed as having autoimmune illnesses years before the hypothyroid diagnosis.  Why didn’t anyone think to test that?  With the “normal” antibody range maxing out at 35, and my results coming in at over 300, it was clear that I had an autoimmune issue with my thyroid.  Shocking.

I spoke to my doctor’s office today, getting the latest results.  Suddenly it hit me that this has a genetic aspect to it, so I emailed my immediate family and my cousins.  And what happened?  A cousin wrote back that her mother, my aunt, was diagnosed with a hypothyroid years ago!  WTF?

Now, I’ll admit, I wasn’t fantastic about communicating my antibody issues, but at least that only happened several months ago.  With my aunt we’re talking years.  For something with a genetic component.  It took 10 years for my first autoimmune issue to be diagnosed.  Now, 9 years after that, I have 7 diagnoses.  So far.  Many relatives were diagnosed after me, and theirs were much easier because they had my history to reference (I’m just about the oldest in my generation, and mine started at a young age, even before my grandmother’s RA.)  Wouldn’t they think that this information may have helped me get diagnosed?  Wouldn’t they think that maybe, just maybe, this is information worth sharing?  What else don’t I know?

ARGH!!!!!!!!!!!

I try to be patient.  I really do.  But when family members don’t share basic information….?!?  Time to revive and update that chart.  And this time I’ll hound people until they get it done.  It’s too important to ignore.  We all need to talk about these things!

 

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Posted by chronicrants

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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2 Comments | Educating, Expectations, Kindness, Limitations, Raves, Support, Symptoms, Thoughtfulness | Permalink
Posted by chronicrants

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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Posted by chronicrants

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.

THEY ALL KEEP ASKING ME HOW I’M DOING!

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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