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The problem is that it’s very outdated.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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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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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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