My fertility isn’t your business

April 29, 2016

Why do people keep trying to convince me that I’m able to have kids?

Ok, I know the answer. It has to do with them wanting to give me hope, them not wanting to see someone give up on something wanted, them not wanting to admit that they might also fail to have the children they want… them them them. It’s not about me.

But it still bothers me.

When I was in my late 20s I decided that I didn’t want to pass on these genes. I had an entirely unhelpful diagnosis of Undifferentiated Connective Tissue Disease. That roughly translates to some-sort-of-connective-tissue-disease-but-we-don’t-know-what-or-how-to-treat-it. I was looking at 60 years of pain ahead of me and I wasn’t happy about it. No, I couldn’t pass that on to my kids.

But even as I said it, I still hoped I’d somehow have kids. I might adopt. I might marry someone with kids. Maybe I’d marry a woman who wanted to get pregnant. But it still hurt that I’d never be pregnant myself. I’d always wanted kids.

When we had room for an elective in high school, my friends took art and drama. I took a child development class. I started babysitting at 12 and continued to babysit regularly for many years. I was a camp counselor for 6 summers. I always loved kids and always assumed I’d have some of my own. And I didn’t just assume it because that’s the societal expectation (though I’m sure that was part of it,) but because I really wanted kids. The question wasn’t if. It was simply how many and with whom?

So this was a major change in thinking, and it really didn’t help to have people constantly suggesting that I should still have kids. They’d tell me that there was no guarantee my kids would have what I had (and they’d conveniently forget there was no guarantee my kids wouldn’t have it!) They’d say someone might find a cure. Right.

As I moved into my 30s, that conversation stayed about the same, it just became less frequent. My friends knew where I stood, so there was no point in talking about it. No one else brought it up.

But in the last couple of years, something shifted. It’s probably my age. Now that I’m at the do-or-die stage (so to speak) people are asking if I plan to have kids, because if I don’t have them soon, I never will. Ok, I get that. And I don’t really mind that question. What I mind is that they don’t accept my answer!

If I say no, they ask why not. I sometimes say I’m too old, because that’s a convenient answer. But it doesn’t work. I then hear about how their sister’s friend’s coworker had a baby at my age. I point out that their sister’s friend’s coworker was probably married at my age. And already trying to get pregnant. And ready to have kids. And she probably carried the baby for around 9 months before that. I see them look surprised as they do the math. Yeah.

The truth is, I’m single, and I have no intention of having kids alone. I also never wanted to be an older mom. There’s nothing wrong with it, but it’s not for me. I don’t want to be 60 when my kids go off to college. I don’t want to pass along these genes, but that doesn’t bother me as much as it used to now that I have some diagnoses and some treatments that would have worked great if they’d been used 15 years earlier. But I’m still in my late 30s and I’m single, and that’s a problem. Plus I have fertility issues that – funny thing – I don’t go around telling everyone. So even if I can get pregnant, and we don’t know if I can, there’s a good chance it would take a few years.

I think it’s time for some math. Let’s say I meet the love of my life tomorrow. Unlikely, but let’s pretend. We date for a year and then get engaged. I don’t care about a big wedding and let’s say they don’t either, so we’re married 6 months later. Then we start trying to get pregnant immediately. It takes at least 2-3 years to get pregnant. Then 9 months of carrying the baby. We we’re talking around 4.5 years from now. By then I’d be in my 40s. That’s a hard time to get pregnant even for someone who’s healthy!

And that’s if we don’t consider the other reason I can’t see having kids: my symptoms. I can barely take care of myself right now. I struggled to take care of a dog. How the fuck would I take care of a baby?!? Or a young child?!? I’m exhausted after an afternoon with my nephew. I visit my friend and her family for 3 days, she does all the cooking, I stay home half the time she takes the kids out, and it’s still more than I can handle. I couldn’t do that every day without doing real harm to my body. Other people do it. Plenty of you are parents. And I applaud you! But I don’t see myself handling that well right now. And it would break my heart to not be able to pick up my child. But that would be the reality.

And then of course there’s the pregnancy itself. My hormones, my joints…. I don’t see them faring well.

And as if that’s not enough, there’s the part where I honestly don’t know if I’ll ever find someone I want to marry, much less make that happen this year. But see the math above – this year would already be too late for me.

These are all very legitimate reasons to assume that I won’t be having kids. But why should I tell strangers and acquaintances all of this? Why isn’t it enough for me to say no, I won’t be having kids unless I marry someone who already has kids? Why can’t people just believe me and move on?

Probably for the same reason they can’t let it go when I say, “I’ll never be cured.” But that’s a subject for another day.

What about you? Do you deal with this? How do you handle it? What do you say? Please comment and let me know!

Thanks a lot, hormones!

April 5, 2015

It’s easy to forget how much of an effect hormones have on our physical, mental, cognitive, and emotional health until they get all fucked up.

Now, before I continue, let me say that, yes, I will be talking about my period. Oh heavens! Some of you have already IMG_20140312_153843closed the browser screen. Others are squirming uncomfortably. Tough. This is what I talk about on this site: health issues. And that includes periods. Have questions? Read this post from last year.

As I’ve mentioned before, I have PCOS. That’s polycystic ovary syndrome. It’s not uncommon, but it affects different people in different ways, so we have to be careful not to generalize when it comes to PCOS. For me, it means I’ve never in my life had a “regular” period. I won’t bother to describe the horror that was my so-called menstrual cycle when I was a teenager. Let’s skip ahead to last year.

After many years on a few different birth control pills and other hormones, I suddenly stopped getting my period. I’d had some off months before, but this time was different. My doctor had me go off the pills to see if I’d get a period naturally. I didn’t. So he ordered an ultrasound. Now don’t get me wrong, I was thrilled to not be getting a period. It was one less thing to deal with from a body that gave me enough to deal with. And I wasn’t looking to get pregnant, so that wasn’t an issue. But there were 2 likely reasons for the lack of a period, and we needed to know which it was. Birth control pills can lean to a thinned endometrial lining, and that can mean no blood. Or maybe I wasn’t ovulating, so that’s why there was no blood. Maybe it was both. Unfortunately, the ultrasound showed that my endometrial lining was building up. It wasn’t at dangerous levels yet, but it was getting close. That’s not good.

So my doctor put me back on a birth control pill. And it’s not been good. First came the brain fog. Then the moodiness, ravenous appetite, and increased pain. Then the fatigue. I eventually realized I’d become hypothyroid again. Estrogen can bind thyroid receptors (thank goodness I’d done my own research!) My doctor ran blood tests, and while I waited for the results I went on the placebo week (many birth control pills have this: you take the pill for three weeks, then nothing or a placebo for a week.) I got my period (yay!) and felt SO. MUCH. BETTER! All those new symptoms were gone!

The blood tests came back and my doctor increased my thyroid med when I started the next birth control cycle. The symptoms all improved, but didn’t go away completely. The fatigue is still bad. I became nauseated frequently. I had occasional disturbing thoughts. The other day I was just going about my business, thinking about how lousy I felt, and suddenly thought that it might be best to die. Then I wouldn’t have to deal with the health stuff. Hmm, that’s not good. I wasn’t feeling depressed or suicidal. The thought only lasted a moment. But it was a moment too long. I’m usually a happy person, but I’d been in a bitchy mood for the past week. I’m not liking me these days.

Yesterday I’d had it. I was sick of the nausea. I worked too hard to fix my diet to be dealing with this bullshit now! And the fatigue was too much. I worked too hard to fix that, too. And don’t get me started on my mood. I just couldn’t stand it anymore.

So today I made a change. Sure, I probably should have checked with my doctors. But I didn’t. I know what I’m doing is safe in the short term. We’ll worry about the long term at my next appointment in a few weeks. So what did I do? I went off the birth control pills and I went back to my old dose of thyroid med – exactly what I was doing before this whole mess. I’m only 1 week into the cycle. I don’t know if I’ll get my period, but I do think I’ll be feeling better in another day or two, and that’s the important part.

I will need to do something to make sure I get my period at least a few times a year. There are other options. This was the option that we thought would have the fewest side effects. Back to the drawing board! Maybe I need a different estrogen pill. Maybe I need progesterone instead. Maybe I need both (which is what I had before last year.) Maybe I needed to raise my thyroid med more. That’s very possible, and I probably should have done it today, but I just felt too lousy.

Very likely, I will need to try this whole thing again in a few weeks. And I will go through this same misery when I do. But for now, I’m hoping my hormones will calm down a bit and allow me at least a few days of feeling my usual level of lousy, instead of this new level!

What’s your diagnosis?

December 5, 2014

We’ve all gotten some form of the question from a non-medical person:

What’s your diagnosis? What have you got? What is it? What’s wrong with you?

But how often do we have an answer?

For a “healthy” person it seems easy. The answer is usually something well-known and straightforward that requires no explanation, like the flu, a broke leg, a torn rotator cuff, allergies. You give that as your answer and move on.

If you have a chronic illness, though, there’s no simple answer.

Maybe you have one straightforward diagnosis. So you answer: lupus, multiple sclerosis, ulcerative colitis, fibromyalgia, Hashimoto’s disease. You’re even kind enough to give the full name instead of saying MS, UC, fibro, or Hashi’s. Even so, the other person has no idea what that is, so they ask what it is. But do you really want to spend 20 minutes explaining it? Probably not. I usually don’t.

Of course, you might have multiple diagnoses. Maybe you have 2. Maybe you have 12. I always have to stop and think before I list mine, and that confuses people. They don’t understand that the list is ever evolving. A new diagnosis is added, another is changed to something different, and yet another is removed. And the list is long, so I usually just give the few “big ones” and I have to choose which those are at the moment. Besides, the list is long enough that it’s hard to remember. That’s why I always keep an updated list on my phone: so that I can give an accurate list to new doctors. But non-medical folks don’t want the full list, and they don’t understand it. See the previous paragraph. They don’t know what most, maybe any, of my diagnoses are, so they want explanations. But I don’t feel like giving them over and over and over and….

Then again, maybe you don’t have any diagnoses. That’s hard for a lot of people to understand. In their minds, if you’ve gone to the doctor, then you should know what’s wrong with you and you should have a name for that problem. Simple. If they only knew. Medicine is a science that doesn’t have all the answers. So maybe you’ve seen 15 doctors and don’t have a diagnosis yet. Or maybe you have one of those “almost” diagnoses. You know the type. Like my first diagnosis was “Undifferentiated Connective Tissue Disease” which is just a fancy way of saying “We know you have the indicators for a connective tissue disease but we can’t figure out which one, or maybe it hasn’t been discovered yet, so we’ll just give you this label instead.” Try explaining that to someone who doesn’t even know what connective tissue is! Still, I was glad to have that non-diagnosis because at least I had a label to give people. When I had no diagnosis at all for 11 years, too many people (including doctors) thought I was making up my symptoms or that my problem couldn’t really be serious.

On top of all of that, you could have diagnoses you think are wrong. I have a few of those in my records. For example, I don’t think I really have IBS. Irritable bowel syndrome was diagnosed by multiple doctors, but now I think I had undiagnosed Celiac Disease and leaky gut as well as some food intolerances. Now that I’ve addressed all of those issues, my IBS has magically gone away. If you suspect a diagnosis is wrong, should you even bother to mention it?

Of course, you could have a combination of these. Maybe you have one or more diagnoses, but more that haven’t been diagnosed yet and others you don’t believe. That’s especially hard to explain. Sure, I can tell someone I have Hashimoto’s disease, for example, and maybe even explain what that is. Then they think that’s it. When I say there’s something else that we haven’t figure out yet, they’re confused. I have a diagnosis. That should cover everything. How is it possible there’s something else? Well, it’s possible because the human body is complex and, yes, it’s possible for more than one thing to go wrong at a time. Saying I should only have one diagnosis is like saying you can’t have a flat tire and a dead car battery at the same time. Yes, you can. And yes, I can have Hashimoto’s disease and sleep apnea and whatever-the-hell-else all at the same time.

I just got curious. Writing this, I realized that I was only remembering a few of my diagnoses, so I pulled up the list on my phone. The first in the list was one I’d forgotten about as I was writing this: PCOS. That stands for polycystic ovary syndrome. It was diagnosed ages ago, but I’d forgotten. Hence the list. And a perfect example of why these questions are so hard to answer.

Over the last few years I’ve mentioned several diagnoses in this blog, but I’ve never listed them all in one place. I never thought it was important. But I know some of you have been curious, so here’s a short list in no particular order. Of course, this isn’t the same list I would have given when I started this blog back in 2011. Back then, I hadn’t yet received at least 3 of these diagnoses, and I had others that I’ve removed from the list because I know they’re really part of something else. So, as of now, they are:

Hashimoto’s disease, hypothyroid, PCOS, Scoliosis, Raynaud’s disease, tinnitus, undifferentiated connective tissue disease, seasonal affective disorder, upper airway resistance syndrome (UARS), adrenal insufficiency, MTHFR mutation (homozygous A1298C).

How do you feel when someone asks a version of, “What do you have?” How do you answer?

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