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!

I never wanted to be one of those paranoid people

April 26, 2016

We all know one of those people. They’re super paranoid about what they eat. Was the chicken cage-free? Was the feed free of antibiotics? What exactly is in that dish? What IMG_20160426_141926brands of ingredients were used?

I was never going to be one of those people. Ugh!

And yet, I am.

When I first went gluten-free, I avoided bread, pasta, and other obvious foods. Over time, I started eliminating more and more. Then I paid attention to non-food items, like toothpaste and floss. I was doing a lot better, but I was still sick.

I made phone calls. I checked on hand lotion and sunscreen. I washed my hands before I put anything in my mouth – even a Tic Tac!

I learned about surprising places gluten hides, like lemon juice and cooking spray and got rid of those.

Still, I was getting sick.

Then I found out about kissing. Damn it! If I kiss someone who has been eating or drinking gluten, I’ll get sick. Well, that makes dating a lot more awkward! So I’ve been careful about that, too.

Still, I was getting sick. It was a lot less often, but it still happened. What was going on?

Then I spent 6 weeks at home recovering from foot surgery. I barely left. I ate only food that I’d prepared or carefully checked. And I didn’t get sick once. Hmm…

It felt amazing to not get sick at all!!! I wanted to keep that up! But how? I started being super careful about everything. Ok, I was a bit paranoid. I didn’t eat anything unless I was absolutely positively certain that it was safe. If a friend said something was gluten-free I quizzed them carefully, and then I probably still didn’t eat it. But it was worth it. I remained ok!

Last weekend I went to a family sedar. My mother hosted and was her super wonderful, considerate self – except for the matzah and matzah ball soup, the entire meal was gluten-free. Still, when she and my aunt went into the kitchen to get the food, I asked them to wash their hands because they’d touched the matzah, which has gluten in it.

I’d become one of those people. I hate it. But you know what? It’s a hell of a lot better than being in so much pain. So I’ll keep on being one of those people. So be it.

My calendar says I’m recovering that day

April 19, 2016

I used to call them do-nothing days. Or resting days. Or dead days. Lately I’ve been calling them Recovery Days. Because that’s what they are. I’m not doing nothing, I’m recovering!Recovery Day

Our culture says that a day of watching tv when you should be buying groceries and cleaning and going to a job and and and…. is lazy. I say that if you have a chronic illness, sometimes it’s necessary.

I had a recovery day yesterday. I could have pushed myself. I had a long list of things to do. If I’d pushed myself I might have been able to get a couple of things done. But I wouldn’t have gotten far on that list, and I would have done things badly. Then I’d have felt lousy today and I’d have barely gotten anything done at all. Sound familiar?

I used to push myself. At the time it seemed like a good idea. Now I know that pushing myself too much just means I’ll eventually hit the wall and I won’t be able to do anything at all.

So instead I took a Recovery Day. I didn’t leave the apartment. I read. I watched tv. I heated up leftovers for meals. That was it.

And today I felt better! I was able to go out and run errands. I’m sitting in a chair and writing this now (not an easy thing!) For me, that’s a super productive day.

Sometimes my Recovery Days are predictable. I can look at my calendar right now and tell you that I’ll be taking a Recovery Day on Sunday, so that’s blocked out on my calendar. I knew I’d probably be taking one yesterday, too, but I wasn’t completely sure until around 10am. I could just feel it, and there was no doubt it’s what I needed.

I used to take Recovery Days 3-5 days per week. If I left the house for an hour, the next day would be a Recovery Day. These days I’m feeling better and I only need them 1-2 times per week – yay! Of course, even now I have bad weeks, too. Sometimes a Recovery Day means spending all day in pajamas and doing nothing but watching tv. Sometimes it’s multiple days of that. Yesterday I felt better and was able to read a novel for a while. All that really matters, though, is that I gave my body the rest that it needed, in the form that it needed.

I know I’m lucky. I don’t have children or anyone else to take care of. I’m not working (though that’s not exactly a good thing.) So I’m able to spend an entire day indoors. I’m able to rest when I need to. But there are other things I should do on my Recovery Days that I can’t. I accommodate myself the best that I can. That’s all any of us can do.

You might have noticed that I’ve been capitalizing Recovery Day. That’s because it’s IMPORTANT! I think we don’t give ourselves enough credit for how hard these days are. We let culture pressure us into thinking we’re not doing enough when in reality we’re doing so much. Sometimes, it’s all we can do to get through these days. I’d rather go to the gym for 4 hours than need some of these Recovery Days. But I don’t have a choice, and I accept that (but it took me many years to finally accept it.)

How do you feel about your Recovery Days? Are you willing to rest when your body needs it? What do you do? How do you handle it? Please let me know in the comments so we can learn from each other!

The reminder system all doctors should use

April 14, 2016

Sometimes it’s helpful to get a reminder about a medical appointment. But sometimes it’s just really annoying.

When they call at 8:30 and I’m still asleep, I don’t want that call. When I’m busy, I don’t want that call. When I have 5 appointments coming up and they all seem to call on the same day, I definitely don’t want those calls.

Except I sort of do. Reminders can be helpful when I’m dealing with dozens of appointments every year.

And that’s why I think my dentist’s reminder system is brilliant and I don’t understand why more don’t do this.

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See this email message? How great is this?! As soon as I make an appointment I get this message. I click on one of the options. If I don’t want a reminder phone call I won’t get one! If i click to be reminded, they send another email a few days before the appointment. If I don’t click on any of the options in that message, they call me. If someone doesn’t want to give the office an email address, they call instead.

Yes, I’m sure this isn’t cheap for them. But then again, think of all of the staff hours they save by not having someone calling all of their patients! And instead of leaving messages on voicemail systems that might be garbled, they get to send a clear, simple email message.

And on my end, I find this so much better than a phone call! It’s not disruptive, I can easily see the date and time, and it’s quick and easy to respond.

A simpler version is the bland, impersonal, highly useful email I get from my naturopath a couple days before each appointment. I don’t know if she sends those manually or if they’re automated, but either way, they’re simple. They remind me of my appointment. They say the date and time. I don’t need to respond. I don’t have to do anything. I don’t even have to deal with a phone call.

Some people prefer phone calls, and it’s great that they still have that option. But it’s 2016 now. It’s about time more medical offices catch up and use email to confirm appointments. Then maybe in another 20 years they’ll be ready to use apps!

Is this unusual? What do your medical providers do? Please comment and let me know – I’m very curious!

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