And the verdict is in: they’re calling me a liar

June 6, 2012

You’d think by now I’d be used to having people call me a liar, but somehow it’s still upsetting me.  Of course, they don’t actually use that word, but it’s the same message anyway.

Yesterday I got the official word that my claim for long term disability insurance was denied.  According to them, there’s nothing in my record to suggest that I can’t work at my old job.  Maybe they want a blood test to prove fatigue?  Great, invent one and I’ll happily take it!  Otherwise, fuck off.

When the symptoms first began I was a kid, and some people suggested that I was making it up to get attention.  Then there were others who believed that I really thought I was in pain, but that the pain wasn’t real, so they suggested I see a psychologist.  That was only barely an improvement, but at least they believed that I meant it.

Over the years I have had to plead my case to many people.  If I had something easily recognizable and definitely diagnosable, like cancer, there wouldn’t be an issue.  People would offer sympathy and would try to help.  If I’d been in a car crash, with the accompanying photos and x-rays and whatnot, they wouldn’t question it.  But I have invisible illnesses, hard to define, hard to diagnose, with symptoms that vary from person to person, and that vary for a given person from day to day.  So the easiest thing?  Say it’s not real and enjoy living in denial.  That’s great for them, but it doesn’t do me a damn bit of good.

To add insult to injury, every time I have to plead my case, I have to focus even more on the most negative thing in my life.  It isn’t enough that I have to live with this shit, think about it constantly, rearrange my life for it repeatedly, and give up my dreams for it, apparently it’s also necessary that I relive the worst of it just to convince some asshole that they really must pay me the money that they owe me.  Signing up for the insurance policy and paying the premiums guarantees a right to file a claim; it doesn’t for a second mean that the claim will be approved.  So how do I prove that I was so exhausted when I stopped working, I had to take a break and lie down to rest in the middle of getting dressed each morning?

I realized a few weeks ago that the claim would probably be denied, and mentally I was ready for it, but I guess that emotionally I hadn’t prepared.  Mentally I figured out what I would need to do to appeal the decision.  Emotionally, I didn’t realize how strongly I would react to being called a liar again.  Again.  Always, over and over, year after year, decade after decade, people would rather believe that I’m lying or confused than believe the truth: that this could just as easily happen to them, too.

Of course in this case, it’s probably just as much about the money.


That kid thing

May 23, 2012

Just when I think I’ve accepted that I’ll never have kids, I get pulled back in.

Most of us are taught that life is supposed to go a certain way:

grow up –> get a job –> get married –> buy a house –> have children –> retire

Of course a lot of that is just social conditioning.  That is the path that some people will take, but it isn’t the path for many others, and that’s fine.  The important thing is that each person does what is best for them.  It’s important to first figure out what you really want, then find a way to make it happen.

I’ve thought a lot about what I really want, and I realized that I really do want children.  I don’t feel the need to own a house (though I still feel the social pressure for that) but I really do want to have kids.  I’ve watched many close friends have children in recent years, and as fun as it is to be an auntie, it makes me ache for motherhood.  [This picture is me as an auntie.]

The idea that I won’t have kids isn’t new.  Between my actual physical problems which would make pregnancy difficult (I’d have a lot of bed rest, I’m sure), the PCOS which would make conceiving challenging, the trouble I’d have caring for them, and the genes I could pass on, I decided a long time ago that I wouldn’t have kids. Well, I mostly decided it.  I mean, I thought that would be the case.  I guess a small part of me always held out hope that things would change.

Watching my friends go through it, I try to focus on the bad parts.  Pregnancy does crazy things to a woman’s body.  Babies are all about sleepless nights and disgusting diapers.  They complicate your life.  They cost money.  Who needs it?  Life is easier without kids.  And a few years ago was one thing, but now I’m about to officially be in my mid-30s, so it’s not like I could get pregnant for much longer anyway.  I can’t imagine being able to adopt kids with my health problems, and again, how would I care for them?  No, I simply won’t have kids.  That’s all there is to it.  [Of course, it’s always possible that I’ll marry someone who has kids from a previous relationship, but that’s a bridge I’d cross when I came to it, and I’m definitely not counting on it.]

In the last few weeks I’ve been doing a lot of research about some treatment options for my health problems.  There’s no cure, of course, but for the first time I can imagine that things could actually improve a lot.  My energy could come back, the pain could decrease, the nausea could mostly go away.  If that happened, I’d want to date again, and maybe I wouldn’t be so worried about letting someone get close to me.  Maybe I’d finally meet someone to marry.  I also read about fixing PCOS.  Maybe I’d even be able to get pregnant easily.  If I really felt better, and was in a solid relationship, maybe I’d have kids….

OH CRAP!

I caught myself in that train of thought and it was as clear as ever: I still want kids.  I don’t want to want them.  I’d love to not want them.  Call it the biological clock, call it social conditioning, I don’t care what you call it.  I want kids.

It’s very unlikely that I’ll ever have children of my own.  I’d love to avoid kids altogether, to forget they exist, but of course life doesn’t work that way.  Health problems have robbed me of a lot of things that I’ve managed over the years to accept.  I never had that great feeling of invincibility that I’ve heard most teenagers have.  I had to work twice as hard in school because I couldn’t write.  I’ve lost relationships and avoided starting relationships.  I’ve lost jobs and missed out on great career opportunities.  And I won’t have children.  I hope that one day I really can accept that.


A little support goes a very long way

May 21, 2012

I have two kickass (if I do say so myself) blog posts in the works, but I’m going to hold off on those for now and instead ask you to take a look at yesterday’s post if you haven’t yet.  And if you’ve already read it, please write a comment.  I know that everyone can relate in one way or another – I’m guessing most of us have had trouble finding a doctor or other practitioner, or going against the “standard medical advice,” at some point.

I’ve gotten so many great comments in my email, through Twitter, and on this blog, and it’s helping so much.  Some people are offering practical advice for my specific situation and others are offering general support, and they are equally welcome.  So please take a look.  I’ll pick up with other topics again soon, so stay tuned.  Trust me, they really are kickass.


Tearing my hair out, aka No idea which treatment to try

May 20, 2012

Today I wrote this email to some of my friends and family because I feel confused, overwhelmed, and stuck.  As I was near the end, it occurred to me that you might have some useful advice.  So for anyone out there who has had to deal with difficult treatment decisions and/or has thyroid problems, please offer your advice.  Please write a comment, sent a tweet, or shoot off an email.  I would love any and all advice that you want to give!

This is the exact email I wrote.  The only change I made is my name at the bottom.  Please tell me what you think.  What would your next step be if you were in my position?

~~~~~~~~~~~~~~

If you’re getting this email, it’s because I think you’re smart and I value your opinion.  You might not have an opinion to this, and that’s ok.  There’s definitely no one right answer.

Basically, I’m stuck with the health stuff.  I definitely need to try something new, and I can’t decide how to proceed.  Every time I make up my mind, I change it.  If you feel like reading this, set aside a few minutes.  I’ll lay it all out.  If not, that’s fine.  I definitely won’t hold it against you!
For the last three months I’ve been on a gluten-free diet.  This has definitely helped.  It has definitely not helped enough.  My guess is that being gluten-free is part of the solution.  I need to figure out the rest now.
I am making the assumption that I need to treat my thyroid.  This could be wrong, but out of everything, this is the part I’m most confident about and I feel good about proceeding this way.  Also, I don’t have any other ideas.  But no, really, this does make sense.  Hypothyroid and raised thyroid antibodies (which are related but not the same, and I have both) can cause fatigue (hello!).  There is a link between these and PCOS, IBS, acid reflux (which I may or may not have), and joint pain.  Then I’ve been reading about other random symptoms that I can relate to but that I’m not focusing on.  A good example is a “normal” body temp below 98 degrees.  I have this, and I never thought much of it, other than adjusting my math when calculating a “fever.”  Maybe it’s related to the hypothyroid or maybe not, but I’m not going to worry about it.  However, there’s a good chance there’s a link with the fatigue and GI problems, and a smaller chance with the joint pain.  By the way, hypothyroid means my thyroid is underactive.  Really, you don’t need to know anything about it for this.
For 8 years I have been on the most common drug to treat hypothyroid.  At first it seemed to work in terms of my energy level and blood tests.  Now my blood tests still look good, but I have been finding more and more people talking about having normal blood tests while still have hypothyroid symptoms.  There is no treatment for the raised thyroid antibodies other than surgically removing the thyroid and I am definitely not considering that.
Options for treating hypothyroid and raised thyroid antibodies:
— Try another drug of the type I’m on.  This treats the T4 hormone.  There are other drugs and maybe one of those will work.  This is the approach that almost every doctor will suggest.
— Try a drug to treat the T3 hormone.  There aren’t as many doctors who will do this, but they can be found.  I found one in Newton.
— Try a combination of T3 treatment with supplements or dietary changes.
— Try supplements and dietary changes – no drugs.
— Try dietary changes alone.
The easiest answer is to try the drugs, but the more I read, the less likely it seems that these will work.  Trying the drugs would give me a faster answer than diet, but I could be dealing with nasty side effects.  I think it makes sense to try dietary changes.  That’s why I did the gluten-free diet: I read a lot about gluten triggering thyroid antibodies.  Celiac is when gluten triggers intestinal antibodies, so this makes sense.  The fact that the diet has helped a little makes me think that I’m on the right track.  And the idea of not having daily nausea…. what a dream!  So even if the dietary changes don’t fix everything, they should at least fix the GI problems and that would make this all worthwhile.
Ok, so that’s why I want to pursue the “unconventional” approach of changing my diet to fix my thyroid instead of taking more pills.  And because it’s unconventional, I can’t simply ask my PCP, etc. for advice.
If you think this isn’t the right approach please speak up, but give me a reason why you think it’s wrong.
So assuming that I should make dietary changes, the problem is that I haven’t found any agreement on how to go forward.  Some people say to take all of the trigger foods out of your diet, then reintroduce them one at a time to see what happens.  Others say to eat normally but remove one trigger food at a time to see what happens (this seems like a terrible idea – if more than one food is a problem, you wouldn’t figure it out this way.)  The lists of trigger foods vary.  They all include gluten and dairy.  Most include soy.  Some include eggs.  Some include certain fruits.  Some include certain vegetables.  Some include corn and corn gluten.  Some include all grains.  Some include alcohol or caffeine or carbonated drinks.  There’s no one diet to try.  Clearly I can’t remove all of the trigger foods from all of the diets all at once – there’d be almost nothing left to eat!
There’s also something called leaky gut.  I think that a lot of these diets are aiming to repair leaky gut even when they don’t say it, but it’s hard to tell.  Leaky gut is starting to become more mainstream in western medicine, so I could potentially find a doctor who would help me with it, but there’s no test and no treatment other than diet.  The idea is that a food allergy/sensitivity causes permeability in the gut lining, and this causes certain things from the gut to link into the blood stream where they trigger an antibody response.  Removing the trigger foods will allow the gut to safely heal.  But then once you have this, it’s very possible to develop new food allergies, so it’s possible that today I need to remove gluten and soy, and in a few years I’d also need to remove dairy, and some time down the road I’d also have to remove watermelon.  But the idea is the same – find the trigger foods.
In theory I can try all of the diets one at a time, but in reality that is really hard and I honestly can’t imagine spending years trying to find the right diet, all the time knowing that the answer may not be diet-related after all.
And having said all of that, hopefully now you see why I feel stuck.  And if you don’t, then please explain the solution to me!  I think I should try a diet, but I don’t know how to determine which one.  I’m reading books, blogs, and web sites.  I am getting advice from commenters on my blog and from twitter friends.  Everyone says something different.  What criteria would you use to make a decision?
Thanks for any clarity you can provide!!  Any insight at all would be extremely helpful!  I’m definitely at the point where I need to try something new, and I could start it tomorrow, if only I knew what it was.
Thanks,
Ms. Rants