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.

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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.

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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

4 Comments | Decisions, Educating, Expectations, Frustration, Healthcare, Isolation, Limitations, Medication, Pain, Rants, Support, Symptoms, Unpredictable | Permalink
Posted by chronicrants

The war on nausea

May 8, 2012

“Are you pregnant?”

She was trying to be helpful.  And I guess it’s an appropriate question when a 30-something woman says that she’s been having unexplained nausea for the past week.  Still, it was a reminder of how incredibly unlikely that is.  There’s a good chance I can’t get pregnant without medical help, but more than that, there the lack of sex recently.  That part really sucks.

Of course, more frustrating than the lack of sex at the  moment was the nausea.  I’m no stranger to GI discomforts.  I’ve been having various symptoms since my teen years.  After around 18 years, it’s still difficult, inconvenient, painful, and upsetting, but it’s certainly not surprising.  The only surprising part is that it’s been different lately.  Over the last few months, since I started the gluten-free diet, it’s been different.  Maybe that’s because of the diet, or maybe it’s a coincidence.  I have no idea.  But this past week has been the worst of all.

It used to be that the more severe nausea and it’s other accompanying symptoms (cramps, bloating, diarrhea) would last for hours.  Over the last few months, there have been times when it’s lasted for a day or two.  This has been especially lousy.  But now, it’s been coming in waves since Thursday.  That’s 5 full days of this bull.  I’ve taken more Pepto than I’d like, but aside from that I just don’t know what else to do.

So I’m fighting this in the only way I know how.  I’m trying to stay calm and relaxed.  I’m watching a lot of tv when I feel lousy.  I’m not pushing myself.  I’m being careful of what I eat.  I’m drinking plenty of water so I don’t dehydrate.  I’m taking Pepto.  And I’m hoping, really hoping, that it goes away soon.  I’d hate to have to fight this at the next level: seeing my PCP so I can get a referral for a gastroenterologist, then waiting for that appointment, then having tests run, then waiting for those test results, then maybe trying a treatment….  That could take months.  Instead, I’ll stick with my old method and try to wait it out.  It may not be the smartest move, but it’s certainly the fastest.

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Posted by chronicrants

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