March in Review


Total pounds lost: 1

Pounds to go: 12

Handcycled: 4 times. 17.75 miles total.

Weekday walks of more than a mile at once: at least 11.

Days vegan: 25.

Personal Life

Bleeding days: 17

Sex: more than 3!

Sigh. This whole trying to get fit thing is rough. I lost four pounds in January, exactly where I should have been for healthy, maintainable weight loss. Then gained most of it back. Then lost a couple. Then went on vacation for the first week of March and gained a couple (not vegan for most of that week). Then lost them. THEN lost two more. And felt awesome, and like I was finally making progress, with a total of five pounds gone. That’s huge for someone my size. I even made sure the scale read the same two evenings in a row to assure myself it wasn’t a fluke. A couple days later the two pounds were back. With no discernible changes from me. Seriously, what the heck? I felt like, why bother? When I really try, I don’t see any real results, so why keep being so strict with myself. Why keep putting a damper on B’s suggestions for dessert or having a meal out? Why not just enjoy life and stop beating myself up over every single pound.

And this is where I’m stuck. I know that I’m at a healthy weight for my height, etc. I also know that losing ten pounds could only help me. I know that I feel good and strong and accomplished when I stick to my goals and eat well. I also know that I feel a sense of defiant pleasure and relief when I give in and just enjoy my meal, probably with second helpings, and my portion of a dark chocolate bar, unrealistic beauty ideals be damned! My one dessert a week plan is out the window.

But I can tell when I’m eating too much for how much I’m burning. When I compare that to how I feel when I eat less, I prefer the way I feel when I eat less. But in the moment, when I just want a couple more bites, it’s so hard. The answer, of course, is to get more exercise. Just burn more calories and you’ll be able to eat those few extra bites and still feel good. So not easy. So not easy, when the act of moving is difficult.

I keep hearing the phrase, “sitting is the new smoking.” I’ve been reading for years how bad our desk-job lifestyle is for us. And I know it. I do. And yet I spend most of my time sitting in front a computer, like everyone else. So I cleared off the top of my dresser and put my laptop there to use as a standing desk. I tried this once before several months ago and felt exhausted after five minutes. Also, it’s less fun to watch YT videos standing up. It just is. (Probably a good thing.) This time, I stuck with it and did everything I normally would have done sitting down, standing up, including reading a book. My feet ached at the end of the day, and my knees felt worse the following day. But I knew it was better for me overall. I’m working on my standing posture in pilates. I tend to put strain on my lower back (the s curve is pretty prominent at the lower spine). I don’t have very much ability to tilt my pelvis back until it’s in a neutral position. So I work on this. And I work on keeping strength in my outer hips and not locking my knees but not letting them bend too much. And keeping my shoulders relaxed and not letting my ribs shift to one side. While I stand here and type this.

And even with only three weeks at home in March, we went out hand cycling four times. Not that that’s great, but it’s not bad. So I feel like I am trying. I am trying to incorporate healthier habits and more physical activity into my generally sedentary days. And even so, I’m not making any progress.

And in my personal life? I had two periods making seventeen bleeding days out of thirty-one. (Including my whole vacation.) But also eleven *consecutive* days without bleeding. It feels like so long since I’ve had that. Maybe December. Such a feeling of freedom. We’ve managed to achieve our more typical sex life, and that feels awesome. My advances have even been turned down a couple times because B was tired. Feels good to be able to offer it and not say no all the time. Except of course I’m slightly crampy and expect my period to reappear every second. Still, better.

I know this minutiae over the same five pounds gained and lost is ridiculous and uninteresting. It feels ridiculous and uninteresting to me, too. I was hoping with my resolve and record keeping here that it would help. It hasn’t. We’ll see. Maybe April will be better.




February in Review


Total pounds lost: 3

Pounds to go: 10

Handcycled: 4 times. 20.7 miles total.

Weekday walks of more than a mile at once: at least 9.

Days vegan: 23 or 24.

Personal Life

Bleeding days: 18

Sex: 3

With my birthday and Valentine’s Day last month, there were lots more justifications for indulging in treats. So even though I did much better with my exercise, I still had a net gain of a pound. I asked my husband, as his birthday present to me, to make an amazing vegan cake. Which I ate a lot of. Then my mother-in-law made me vegan lemon bars. Which I also ate a lot of. My sister made a huge pan of (non-vegan) applesauce cake/bar things which were delicious. I think I could actually taste the butter. We also had a gift certificate to an ice cream parlor. Sigh.

My cycles are endless. It makes me sad and frustrated. Valentine’s weekend had me feeling weepy and looking up IUDs. Again. My husband and I talked. Again. We are getting closer to taking a permanent step.

My physical therapist said we’d had enough sessions and sent me on my way with exercises to do daily. And I’m not very consistent with them, but I have improved a lot. My pilates instructor notices improvements in my flexibility, but it’s not resulting in feeling any better. That’s where I am. How are you?

January in Review


Pounds lost: 4                                                                                                                     Pounds to go: 9                                                                                                                   Handcycled: Once. 3.3 miles                                                                                   Weekday walks of more than a mile at once: 4 or 5?                                                                        Days vegan: 29

Personal Life

Bleeding days: 22                                                                                                          Sex: 3

Here’s what I’ve been thinking about.  I started the month 11 pounds up from my (previous) ideal weight. I actually want to get to a couple pounds below that. I started being vegan January 2nd to break my addiction to cheese. That went fine, except that on one of my designated dessert days I ate some chocolate that had caramel inside (made with cream). Went out to lunch the 31st and shared a very not-vegan dessert. Also I’m taking a chewable probiotic that’s made from milk, but I’m going to be okay with that. I really like being vegan. If you make pizza without cheese (and you just don’t think about what pizza is like with cheese) it’s damn good, and satisfying. I am not the kind of vegan who replaces everything with a soy equivalent. My goal is whole foods, not more processed foods. The weight thing is kinda silly. It fluctuates, as we all know, so these numbers might not be accurate at this moment.

So. I had Nex.planon implanted September 2012. In January I bled 22 days out of 31, often just spotting, but enough already. B is not ready to make a permanent decision. I am. I have researched methods of birth control extensively. I want to get this thing out, but don’t want to go back on the pill or try an IUD, etc. I am terrified of relying only on condoms. So the implant remains, and my life–and our sex life–has much room for improvement. We’ve only ever had sex once or twice a week, and I’d like to get back to that, at least! And I have a feeling that when I do finally rid myself of hormonal birth control that my body will still wreak a bit of havoc.

We need to get back into our once or twice weekly handcycling/running. After we reached our 10-mile goal last year, we let things drop off considerably. We need a new goal–half marathon–and then we need to actually work toward it. I need to get back to my daily walks. The knee thing has really affected that. But it’s just an excuse. I do lots of walking to and from bus stops, and I’ve let that be enough. But it isn’t.

So that’s where I am. Where are you?

New Year, Old Me?

It’s 2015 and I’ll be turning 34 next month. When I met B, I was 31 and had worked very hard to lose ten pounds over many months, getting as fit as I’d ever been, getting ready to join the dating world. It felt good to look down at my midsection and not wish that my belly were smaller but instead realize that it looked darn healthy and good (far from a size 0). I liked the way my clothes fit; I was happy to let B run his hands over my torso. I maintained that weight for six months, and I felt like it was the new normal, that I wasn’t constantly depriving myself, that I could keep it up.

Then two things happened. I got the nex.planon birth control implanted in my arm, and the holidays arrived. I gained a few pounds over the holidays, and I’ve never been able to get back down to where I was. Weight gain and difficulty losing it is a side effect of being on birth control for some, but it’s always sounded silly to me. Just burn more than you take in, right? So, I’m up a few pounds, and can’t get it off, and gaining a few more pounds over subsequent other vacations and holidays means that, to my frustration and sadness, I’m back up those full ten pounds.

But ten pounds is not much, right? How much difference does it make, really? The skeletal system peaks at 30. Everything after that is downhill. And for people with cerebral palsy, the wear and tear is often felt much earlier. I’m not alone in really beginning to feel the effects of aging by 25. When I was a little kid, explaining my disability to some curious schoolmate, they’d sometimes ask me: does it hurt? No, I’d say. And I’d wonder–why would it hurt? I just walk differently. Fast forward a couple of decades and I began to understand. Tight spastic muscles, an awkward gait, and daily pounding on my joints from everyday life led me to feel old and exhausted, just tired and sore, around 25, 26. But we deal with it, of course, and life goes on.

But I wondered if I would feel any different, feel better, have more energy, if I were a little lighter. Ease the pressure on my joints a bit. My parents had always pushed my to stay active and as fit as I could, knowing how important it was. But I was a sedentary introvert, who’d rather read than do anything. Physical movement wasn’t enjoyable, and it was hard. (Imagine that you hate exercise and add a disability to that!) I grew up though, could look at the situation rationally, and realized that I did need to exercise, more than just walking. I started using a recumbent stationery bike (velcroing my feet to the pedals so they would stay put in the correct position). I felt good, doing something so important for my body in the long run. But I ended up injuring myself, messing up my right sacroiliac joint (SI joint) in March of 2010. It was a common sports injury (oh, the irony), and there wasn’t a whole lot to be done (it’s a joint that barely moves in the pelvis). Rest, heat, ibuprofen. All temporary and not that helpful.

Suddenly, I was living with chronic pain for the first time in my life. I mean, it wasn’t sudden. It happened, I tried to deal with it, and I realized it wasn’t going away. Eventually I went to physical therapy and was given exercises and a belt to wear (snugly, all the time for a few weeks, under my clothes) to see if that would help stabilize it. Like the majority of people, I’m terrible at sticking to an at-home exercise routine. But I tried. It didn’t help. I met B. And I was just someone who had a painful hip, not helped by my tight cerebral palsy muscles and awkward gait. I learned to live with it. Sometimes I’d do something to make it flare up, and I’d realize that it had gotten a little better overall, that I could live with it.

I tried to keep making good choices for myself, physically. Now that the bike was out, I started pilates in January 2012. I hurt my left SI joint. It felt like a cruel joke. Maybe I shouldn’t be active, after all. Maybe I should just sit here and preserve all the uninjured parts I have left. Maybe my body wasn’t meant to be active. But the pilates I was doing wasn’t intense; it was supposed to be just what I needed. I switched instructors, to someone who has studied anatomy, and many other teachings beyond pilates: yoga, Franklin, Feldenkreis, and more. She is incredibly careful, gentle, and slow. I do much more mat work than machine work. I wonder idly if I’d gone to her in the first place whether I’d have messed up my left SI joint at all. No use in wondering that, of course.

B bought me a hand cycle and we would go out together for miles. Finally I was getting high intensity, but also low impact exercise. My arms were buff. I felt like we had accomplished something together. In May 2014, B and I got married. I managed to get within three pounds of my original weight and hoped I could hang onto it.

One evening at the beginning of June, my right knee ached. No apparent reason; I didn’t have knee issues. A few days later, it was still there, and I started to worry. After a month, I went to the doctor, just as the left knee started to hurt as well. He said a fold in my inner knee (the plica), which some people have and some don’t, was inflamed, and that I needed to ice my knee as much as I could and that should do it. I was really consistent about icing. I stopped my daily walks to give it time to heal. It didn’t. When I realized both my knees were hurting, I wept. Really. I just didn’t want to think of another, bilateral, chronic pain entering my life. Wasn’t both SI joints enough? Did I really have to start having knee problems? Were my ankles next? All my joints giving in, one after   the other? It’s a little bit of a pity party, I know. But also completely valid, to want to be healthy, and feel good. Knowing that it could be worse doesn’t really help.

I just feel enormously SAD that I finally get married and start my life with my husband, who is young, healthy, and active, and new pain comes into my life and doesn’t go away. Being in constant pain makes me tired. Subdued. It affects my sleep. How I feel. My relationship. I don’t want to be in pain all the time. For myself, and for my husband. For our life together. It’s incredibly depressing to think that B married an old, decrepit lady instead of a  33-year-old young woman, who is generally fit and healthy, and who also has mild cerebral palsy. How much is my CP affecting the SI joints and knees? If I didn’t have the disability, would I not have had these injuries? Is the disability preventing these injuries from resolving themselves? Why even ask those questions? B knows how much I’m struggling. I feel like I’m literally mourning my once pain-free knees. He tries to be supportive; he doesn’t want me to be in pain either.

So here I am. Feeling old. Feeling broken down. Indulging in too much food and in dessert too often. Knowing that I need to work with what I’ve got. Back in physical therapy. Knowing that rest and heating pads have their place, but also that inactivity is not the answer. Knowing that I need to get these ten pounds and maybe more off my knees. If my own health is not enough motivation, then what is? I don’t believe that losing some weight will take the pain in my knees away, but it can’t hurt.

I’m taking thirty days to be vegan. Need to break my current love affair with dairy. When I don’t eat cheese, I don’t miss it. But when I start eating it, I can’t stop. Saw an article about abstainers the other day. People who are able to give up something completely, but who can’t manage to have something in moderation. That’s totally me. I rocked Lent when I was growing up. So I’m not giving up sugar–as I have in the past, and once again, felt really good about it, and it wasn’t even hard. But it couldn’t last. I’m trying to be realistic and sustainable in my choices. I’m using a small dinner plate and watching portions. I’m having dessert, but only weekly, not daily. I’m back to tracking my caloric intake. I’m trying to walk more, knees and all. I’m trying, again, to commit to the PT exercises. I’m trying.


Let me state the obvious. All those things couples work on in a relationship–communication, sex, learning to live with another person? They’re still there after you’re married. Getting to the husband-and-wife part doesn’t mean you’ve made it, you know each other, you understand each other, and now you get to live your happy married life. You’re still the same people working on the same things; it’s just that now you’re really committed to working on them.

We’re still working on sex. Each time we have a serious conversation about sex, I feel like we talk about all the same things and that actual progress is slow. I have to stop thinking that talking about something once will make it so, and there won’t ever need to be reminding or readjusting. And it’s not just B who needs reminding, but me, too. I have written in the past about how B feels like we only have sex when I want to but not when he wants to, like I’m dictating when and he just has to go with it. I heard him and understood when he told me this, but things didn’t really change. I don’t know how to make myself be in the mood and have sex when I don’t want to, so if B has a libido twice as active as mine, he’s only getting sex half as much as he’d like. Sometimes when I offer, B says he’s too tired, and I get the feeling that he says no because he wants to be the one to say no sometimes, to have a feeling of control.

The last time this occurred, I lay next to him and we talked about it. He felt like I was making the statement ‘I’m ready now, and this is the only chance you’ll get’ like he has to perform on command. It’s true that I have the impression that he’s ready all the time so when I’m finally ready too, he’ll be happy to participate. He feels confused because he knows I like being freshly showered before sex, but I don’t want sex every time I get out of the shower so he never knows when. I’d never thought of that being confusing.

I learned that our communication styles about sex are significantly different. B likes to just let things happen. Maybe making out turns into sex and maybe it doesn’t. He likes nonverbal communication. And I’m pretty much the opposite. I don’t need to schedule sex outright. But if I’d like us to both be clean, awake, and in the mood, that takes some verbal communicating. And I think that’s where we’re confused by each other. He starts kissing me in bed, and immediately my mind goes to ‘Are we just making out, or does he want sex? When was the last time he showered? And I need to get the lube,’ etc. etc. I don’t just let things happen because sex isn’t like that for me. Sex isn’t spontaneous. I like to say it straight out and then we’re both clear on each other’s hopes or intentions: I’d like to have sex with you. I find that both secure and sexy. He feels like I’m telling him to have sex now. This discussion was eye-opening. I’m not quite sure what to do with the information, except work on my nonverbal communication skills and try to be more comfortable going with the flow.

After learning about each other’s communication differences, we talked again about our actual sex life. Sometimes I feel rushed to be aroused and ready because B is already ready. (He’s so damned responsive. We use the microwave/oven metaphor. He heats up like a microwave. I’m the oven.) He said, but I always wait for you to let me know when you’re ready. And I admitted, I know, but I still feel rushed sometimes. We’ve been having trouble with B getting me to orgasm, or nearly there, with his hands. So I have to get myself aroused with my own hand while he waits around kisses me and stuff. And then we manage penetration and I continue stimulating myself while B reaches orgasm. I’m making that sound clinical and sad, but it’s not. I do enjoy it. I do want to figure out other ways. We talked again about extending our foreplay time. I don’t actually like the term foreplay because it sounds like it’s just the cursory moments before the real event. I want us to keep exploring and discovering new ways of giving each other pleasure. Penis-in-vagina sex doesn’t have to be the goal every time. I’d like us to get more comfortable with oral sex, for example. There’s just so much potential, and really, we’re still very new to this.

Then there’s the hygiene goal. I’ve spoken about hygiene with B several times over the past year: ever since my UTI, things have not been the same for my urethra. It still feels irritated regularly, and I can’t pinpoint anything specific, though peeing and sex seem to trigger it. I talk about bacteria and how important it is to have good hygiene around sex. I talk about how I do not associate my bottom with sexiness because I associate it with, you know, poop. Even if I’ve just showered, I’m not going to be turned on by B rubbing against my bottom. It just doesn’t turn me on. B seems to think I can learn to be turned on, that it’s just an issue of learning to accept that my bottom is sexy, and I keep trying to explain that turn ons are different for everyone, and that just isn’t one of mine. And finally I told him that since I associate the bum with bacteria, it’s actually a bit of a turn off when he rubs against me. But I know that he enjoys it, so I don’t mind it–as long as he realizes it’s not going to drive me wild. If he’s trying to get me ready for sex, that isn’t going to be the way to do it.

The anus, the vagina, and the urethra are very close together. Men have a much better anatomy for not spreading bacteria from one orifice to another. I have pretty good hygiene–all that wipe from front to back, pee after sex, wear cotton underwear stuff? I’ve always done that. And I think B doesn’t really get it. He thinks I’m making too much of a big deal about all this stuff. But here’s the thing, if his penis bumps into my bum on its way into my vagina–that’s enough to set all the flora off kilter. And I don’t want to get an infection again, not when I’m still dealing with the after effects of the first one. Associating infection and pain with sex is not a good thing, and can we please just both agree to have clean genitalia before we engage in sexy stuff?! I think we’ve finally agreed on that. No you don’t have to shower every day in case today’s the day I want to have sex with you. And yes, doing a quick wash with a wash cloth is not spontaneous. But I will feel more sexy and more inclined to do sexy things with your penis if it is clean. Simple hygiene as a base line is good. It was a good conversation. Finally progress?

Nope. Because right after all of this communication occurred, I started the never-ending period. As a recap, the first year after I got the nex.planon, I had seven consecutive months without a cycle, and I was pretty happy. Right at the first anniversary mark, the cycles came back and were really irregular and often. More like twice a month than once. Right at the second anniversary mark I started another cycle. That didn’t stop. For 35 days. After a couple weeks I was like, okay, we should just have sex anyway. We’ve done it before and it wasn’t too messy. Then it got heavier, and I thought, ugh, never mind. But finally, finally, it stopped. And we had sex. And it wasn’t great. Because it had been so long. I was a bit sad but not surprised, even though I did use my toy to keep things stretched out and even though my body felt like it actually wanted sex. All those things we talked about need to be revisited so they can actually be applied.

I have one more year to go on this birth control and I am really, really ready to get it removed early. Now. We have seriously discussed B getting a vasectomy. He’s open to it, but it’s an incredibly big decision to make for someone who just turned 30. Even though we don’t want kids. And even though we would adopt if we did. It’s still a big decision. I was ready to schedule the appointment for him. I want the vasectomy and my birth control to overlap while the procedure takes effect so there’s absolutely no possibility of a mishap. So he has several months. But I dread what happens next with my cycle. I dread also finding out what my body does on its own again. And I’m trying not to get my hopes up too high that my libido will blossom without manufactured hormones. What if our sex drives actually match up when I’m not on birth control? But what if it’s not affected by the birth control at all and this is just how I am?

Two months married

Today, B and I have been married for two months. Rather than write about our sex life (it hasn’t changed that much) or my ongoing physical issues (new pain=less action=not great physically or mentally), I want to talk about my relationship with fiction.

Growing up, I read a ton. A ton of young adult novels, and lots of romance novels too. (Though I knew even then that they were pretty ridiculous.) I watched vast amounts of romantic comedies and dramas. I swooned over Mr. Darcy and Johnny Castle. Lately, I’ve tried to pinpoint how my view of fictional representations of love and romance has shifted; let’s see if I can articulate it. Before I fell in love with my husband (so for 31 years, people), I drank romantic stories in and loved (most of) them, and longed for romance myself, wished and waited for it. All the while I was very aware that the stories were fiction, and that love wouldn’t happen exactly as I saw it or read it, if it were to happen at all. But knowing that what I read and watched wasn’t real did not help me to know how it would be when it was real. I literally could not know or understand how it would feel to be in love with someone until it happened. Fiction was all I had to go on. Well, fiction and my parents’ marriage, but all that early romance stuff happened way before I was born. Maybe their marriage is what happens when the movie ends…

I can remember my sister talking to me on the phone, having just watched the Colin Firth version of Pride and Prejudice (again) and saying with a giddy sigh how she wished romance could be like that. And I thought–wait, you’re married! Haven’t you experienced giddy romance? Isn’t that what falling in love and getting married is like? I didn’t understand it. And I was sad that my married sister was sighing over…fiction, even after experiencing real relationships. But I understand her now.

Movies and books need conflict and plot development. Stories need sparks to keep the audience engaged. But real life simply isn’t like that. There isn’t a story arc all mapped out nicely. And unless you create your own drama, life usually isn’t very dramatic. And thank goodness really.

Before B, I used to feel all aflutter over romantic story lines and really settle myself in to enjoy a romantic book or movie. I have quite a collection of both. And now I see, the stories are just so artificial. I know they’ve been created to entertain and titillate. The characters–are characters. Even if they’re three-dimensional, they’re still constructs speaking dialogue in a scripted story. And let’s not even get into the sex scenes. Of course, the perfect montages bugged me even before I had sex, but now. Sigh. No one would lie in their own bed completely wrapped in the top sheet. But here in the US, we can’t show breasts. Let’s see a real, comfortable relationship: I don’t put on a robe to go to the bathroom or get a drink of water, and I don’t wear pajamas unless I’m on my cycle (then bottoms only). But if we were to portray that on film, well then it would be a huge deal–nudity! So yes, the sex perfect scenes are ridiculous. But we, as an audience, want them to be. The purpose of fiction is to help the audience escape reality for a while.

But my point is, I just don’t enjoy romantic fiction the same way anymore. I’m not sure that this is a good or bad thing. I’m glad I’m not longing for fictional love and wishing my life away anymore. And I don’t think I can say that I don’t love fiction anymore because real life is so much better. It’s not better–it’s realer. Real life, real love, real sex, real marriage. Now I know what they are, and I’m more acutely aware of how unrealistic our fictional representations are. They’ve lost their appeal. Perhaps they’ve lost their place in my life because I don’t need them. Will I still feel the urge to escape reality and indulge in romantic fictions sometimes? I think so. But I think I’ll continue to be disappointed by it. Too kitschy? Too scripted? It just doesn’t ring true.

I wasn’t swept off my feet. I didn’t engage in verbal sparring matches with someone I thought I despised, only to fall for him later. I met a man. I liked him. And then I loved him. It was as simple as that–an easy, gentle falling. It doesn’t make for a very interesting plot line.

And now when I read or watch these fictional love stories, not only do I know for sure that they are not real, I know for sure what is real.

I will say that being married has changed me emotionally and psychologically. I have a husband–I am a wife. We’re committed to a life together. That’s amazing. Like, I’m still a little awestruck that we did such a big thing. I can stop searching and wondering. He’s here; he’s mine; we’re together. This is real. This is it.