Unwellness

sesame place, part deux

So, we have a season pass to Sesame Place and we intend to use it. We went again last weekend.

He was extremely happy to be there, as evidenced by the dancing:

We went to a show first and that was great.

Wes thinks this picture is hysterical in that I look more excited than Beck to see Abby. Hmph. I am just happy for my happy boy. That is all.

And then he had a screaming, flailing tantrum when the show was over, having received a high five from Elmo and not understanding why he wasn't getting more of the good Elmo loving right then and there. We promised him we would find more friends and he was better. But not great.

We ate French fries and Elmo cupcakes and that was fun. But after that, Beck seemed sort of sullen. He was not into the rides. He was not into the water. He played on the boring playground that one could easily find in Brooklyn and that was about it. We were starting to think that Jennifer was right about it not being so perfect after all.

He kept saying, "MO FFF" and doing that adorable and pathetic little sign for "more" with his hands. I insisted this must mean he wanted more French fries. Wes says that perhaps this reflects more about me than anything else. Nonsense.

We decided he was exhausted and we put him in the stroller and walked over to the impossible-to-walk-to B&N bookstore across the way. Only a New Yorker would attempt this walk, which is not at all pedestrian friendly. It was the principal of the damn thing. No way were we getting in a car to go 1/4 mile. Here you see my displeasure:

We had a lovely couple of hours in B&N while he slept. We read grown-up books (no, not porn, you assholes) in the cafe and chatted. It was delightful, even if it was the same cafe in the same store that we have 10 blocks from our house. Sometimes you have to drive 90 miles to find the time to just sit together. Especially if you are married to Wes.

Then Beck woke up and we headed back over. And it was then that we figured out what he was saying:
"MORE FRIENDS!"
 and our hearts broke just a little. Poor boy hadn't been having any fun because all he wanted to do was be with his Sesame Friends. So we made that our mission and found more friends and more friends until the MORE FRIENDS Extravaganza that is the overpriced Sesame dinner with lots of friends. Which is like a giant blissfest for our boy.

He had such a good time and even ate a few bites of food this time. We strongly believe that the Cookie Monster this time was the same one who loved him last time.

(I think I never mentioned that story - last time we went to dinner, had this amazing Cookie Monster experience where he held Beck like a baby for an extended, blissed-out period. Then the next morning, this kind-looking redhead woman employee stopped us on the way into character breakfast and said, "I WAS YOUR COOKIE!" She recognized Beck from the night before and deeply loved him. This time, the Cookie Monster seemed highly demonstrative and lovey and pointed to Beck and then to his heart as though he loved him particularly. I think it was the same amazing woman inside.)

Beck and cake (please note Wes' extreme dismay - it goes without saying that this was my idea, right?):

He was much perkier after dinner (thanks, cake!) and climbed the giant rope structure with Dada.

The most amazing thing that happened for Beck was that we went, at the very end of the night, into the place where Elmo is permanently waiting for kids to take pictures and there was no one there waiting. We had Elmo to ourselves. Beck was so in love with him and Elmo played tag with him. It was seriously dream-like.

The most amazing thing that happened to ME was this: Beck and I were holding our spot for the parade. Wes was returning to us from the bathroom when someone said to him, "Tell your wife that I love her blog!"

Oh yes, people. TWICE now I have been famous. And this time someone who has read enough to recognize not just me or Beck but WES! Who are you, person whom I adore? Who was at Sesame Place last weekend and saw Wes? Big thank you for saying something and TOTALLY making my day.

the unwellness platform

In little more than three weeks, I will be meeting a lot of mommybloggers who are bound to be full of opinions and beliefs and dealbreakers. I have therefore developed this quick and easy position paper which potential mommy friends might use to decide whether we could be a BFF match. Use it wisely and we will avoid wasting time with all those pleasantries only to discover that you only befriend fellow attachment parents and I don't play with non-vaccinators. I am using spectrums because so few things in life are black and white, don't you find? Other than my supreme righteousness, of course.

 

I hope this has been an informative and helpful shortcut for all you potential BlogHer soulmates out there.

If you're new here, please know that I am kidding. Sort of. In a sort of secretly serious way.

a parenting 'what now?' moment

Last night, during the usual screaming freakout when I leave the room (when he doesn't fall asleep, I go get Dada to bring him a cup of milk and say goodnight, but inevitably he screams bloody murder when I leave even though we do this frequently), Beck was apparently more upset than usual. When Wes came in and turned to get him a book off the shelf, Beck flung himself over the side of the crib and landed with a really amazing and sickening thud on the ground on his back. I was downstairs and I KNEW what had hit the floor.

We have had very little warning that he might start climbing, let alone flinging, over the side of the rail. And so, we carefully put him to bed asleep last night and then swore to turn the crib into its toddler day bed version as soon as we woke up.

Honestly, this was enough of a freakout for me. I had lived in deep denial that we would ever face a non-crib existence, one where he could roam freely and not be forced to stay in his crib singing himself to sleep on nights when he didn't fall asleep nursing. This all signifies BIG KID to me and I am highly unprepared for this next big parenting phase, independence.

But then, Wes started poking around this morning and discovered that:

A) one needs a conversion kit to turn the crib into a day bed

B) the company went out of business in February

C) the store where we bought the crib (a family-owned store in Chelsea) is closed this week for vacation

Um.... Shit.

We'll be poking around the Internet and every store in the tristate area today, but what if we don't find one for a couple of days? I guess we will be spending long, long, long hours ensuring that he is put in his crib totally asleep. And hoping for the best. And kicking ourselves for not looking into this when we bought the crib in the first place. Shit again.

ETA: CRIB TENT! Thank you, liza.Thanks to Jennifer of Arcane Matters who gave this to us before he was born. It was just about to be sold, as we had wanted it to keep cats out of crib and they never really tried to jump in when he was in there. But after much wrestling with rods and velcro, Beck is excited about his tent. This should hold us until we can track down a conversion kit somwhere in North America. Anyone in Quebec with an in into the now defunct Morigeau Lepine?

the conference call, aka, the meta call that made me settle down

I have been hemming and hawing to Wes and to this blog and to twitter and to my poor, patient assistant at work (wait, have I ever told you about my assistant? whom I adore and also who makes me seethe with envy? she is a pretty successful artist already, at the age of about 9 years old or so and her parents know absolutely everyone including the creator of Elmo and she has a published novel that she wrote and published simply for the purpose of trying to get it purchased and then deaccessioned by the NYPL as an art piece.... she is fascinating and brilliant and excellent with computers and more than I could ever ask for in an assistant and if I make it through another year before she is pilfered for some higher calling, it will be a fricking miracle... wait. what was I saying?)....

Anyway, I was nervous about this BlogHer conference call. And it was last Wednesday and it was FINE. Totally fine. Much of it was information about what to expect and how it will go. And Megan, our moderator, is so confident and awesome that I came through feeling pretty confident, too.

The crazy part was that it was so meta for me. We talked about how important it was that we convey a message about BlogHer because we are the first Mommyblogging track panel. One of our jobs is to be sure that people know that the conference is what they will make of it and that they should have the confidence to talk to people and not hide (or maybe to embrace and enjoy the hiding with some other hiders, if necessary) and that bloggers, many of us, are by our nature better with writing than speaking and that can be weird but we're all just people trying to find our tribes and we shouldn't assume that just because a bunch of people are already friends and talking together that they are trying to exclude us...

Anyway, these were naturally some of MY concerns, being a BlogHer newbie. I am a panelist and feel awesome about that and I do have this HUGE dose of inner confidence (that which makes me always think I am right, for example, even when I am politely nodding and smiling about your wrongness). But I also have some of that normal blogger/writer social anxiety stuff. The Middle School stuff, I guess. The lingering issues caused by the way those bitches made me feel on the playground in 7th grade. I am mostly over them and honestly, I usually do fine in social situations. I just worry a lot beforehand. So this whole call, while I was being tasked with encouraging newbies, was actually like a big flashing message to ME, the newbie.

Because the bottom line for me has been, even as I was contacted and selected to be on a panel, that I am still feeling pretty small potatoes and tiny and so, so different from all these other Power Mom bloggers and while there is some jealousy there, there is also confusion for me. Closer inspection into all of this marketing and new media stuff has really made me think about what I want out of this and it isn't that Power direction so many are taking. I am actually curious to see how much it dominates the conference and whether it will interest or distress me. Currently, I remain open and will see how it goes. I trust this organization and know from everything that I have read about last year that people come out energized not just to market and brand themselves but also to WRITE more. And that is why I want to go. I am not sure how I feel about being a brand, though I am a realist and know that business is an important part of publishing, online or off. I will let you know after I learn more about it. But I DO know, that the idea of meeting and hanging out and learning from so many awesome writers is too big to ruin with something silly like nerves. So I am not going to whine about how nervous and small and unimportant I am anymore.

Besides, how many years have I spent shouting about how I want my story told? How many years have I been trying to write about love and my crazy family and make people see that our difference is not so different and that Love Conquers All?

I have been worrying a lot about not having an "elevator pitch" for the Blogger Speed-Dating session at the beginning, when we get to introduce ourselves to tons of other people and say what we blog about. What the hell do I blog about? It's a mommyblog. It's a queerish blog. It's an illness blog. It has been a travel blog and a home renovation blog and a librarian blog and an infertility blog and a miscarriage blog and a pregnancy blog and a rantfest. It's a "personal blog," but what a boring catchall that is.

So maybe it's a blog about love.

alphabet

He is brilliant, clearly.

Apologies for the way I repeat every letter after him - if you don't repeat them, he stops and stares at you until you do so.

Please also note that the cut that happens in the middle occurred because Wes came along and started taking photos and that distracted Beck, who had to stop and pose and say gleefully, "TWO cameras!" And then I turned off the camera and ate Wes' head and he's extremely lucky that Beck came back to the alphabet a few minutes later and finished it off for my video. And then we made a secret signal for me to give him when I am videoing so that such a thing never happens again.

The alphabet thing he's pointing to is a find from Saturday's Brooklyn Flea, which we love and highly recommend. Awesome treats and nice people and fun finds.

First rule of fibromyalgia? Don't talk about fibromyalgia.

First of all, I would like to say that I have not even seen or read that Fight Club thing from whence I stole the title. But I thought it up in the shower today for this post I had started and it seemed fitting.
 If it is not fitting, don't blame me. I didn't see the movie.

A blogger I enjoy is leading a panel at BlogHer on Chronic Illness and because of that I found this site: Chronic Babe.

And because of this, I found THIS ANNOYING SALON.COM ARTICLE.

And this KICKASS RESPONSE.

I think my favorite part of the Feministe response right there is this little tongue-in-cheek bit:

What could possibly be more vague than widespread muscle pain for more than three months, combined with the presence of at least 11 tender points over 18 muscle groups?  Doesn’t pretty much everyone have those symptoms?

Oh, no, wait.  They don’t.

Immediately after the hateful little diatribe quoted above, Burton then has the nerve to write this patronizing and disingenuous sentence:

By the way, I don’t mean to denigrate patients who experience pain associated with fibromyalgia.

Fuck. You.

Bwa-hahaha. Indeed.

I mention this part of the article not only for the excellent use of the F word, but for the part where the writer points out that not everyone goes around in pain all the time. Because that's HUGE for me. I seriously spent the first 29 years of my life assuming that everyone hurt at least a big part of the time and that I was just in pain because it was normal to be in pain and that I was a wimp for worrying about it. I assumed this because I came from a family of chronically ill and also hypochondriacal people. I assumed this because the doctor I went to at age 17 for my back pain told me I was too young for back pain (though you should have seen the narrow-eyed, fierce look of EXTREME HATE AND FURY I gave him. I swear to you he backed out of that room babbling nonsensically, such was my ability to terriify with my EYES). I assumed everyone hurt and was just better at hiding it, because no one seemed to care very much that I HURT all. the. time.

And when you hurt ALL THE TIME, you do eventually get used to it. There was a level of pain that I was used to, usually involving back pain, from when I was a teenager. It was the new pains and weirdo symptoms that sent me to doctors again in 2004. This time I was lucky to have really fabulous female doctors who never, not once, made me feel strange or stupid for asking what the eff was wrong with me. I was amazingly fortunate, as most fibromyalgics have very different diagnosis stories.

Mine was this: I had just had a major mental breakdown and was living for one month in a crazy sublet in Sunset Park that I hated and that gave me asthma attacks every damn morning. I had to walk about two miles to get back to my neighborhood to do stuff. I started to notice that walking really hurt my feet. I blamed my shoes. I blamed my lack of mobility during the past months of winter and depression. I blamed all sorts of things for the way it felt like the bottoms of my feet were covered in bruises. And then I just got so tired. And then other things started hurting a lot. And so I mentioned it to my doctor and she ran blood tests. They found this yucky autoimmune marker that often means lupus but she ran more tests and said not lupus and sent me to her friend the rheumotologist. Who immediately diagnosed fibromyalgia.

During the month I was diagnosed and the months following, it kicked in hardcore. I discovered that physical activity, anything above a mild walk around the block, caused severe symptoms the next day. Moving something heavy resulted in my arms turning into rubbery worms of ache for at least a day afterward. Walking too far made my knees start to buckle without warning. I bought a cane and occasionally had to use it at night if we were going out. I was put first on a lowdose SSRI antidepressant (funny since I had just been on every SSRI combo imaginable during my breakdown to no avail - SSRI's do nothing for me for mental or physical pain) and eventually found myself with a prescription for Flexeril, a muscle relaxant that helped me get restorative sleep and helped my body behave itself most of the time.

There were still moments. I used a cane when we went to Spain (where the rain fell on the plane?). I once felt my body course with sudden muscle-locking pain while i was sitting at my desk, brought on from laughing with my colleagues, perhaps? I started to sob at my desk because the pain was so intense up my spine. I had to be helped to the nurse's office and my friend Asia had to come get me and drive me the two blocks home because I could barely walk.

But for the most part, Flexeril really took care of it for me and its only side-effect was sleep-of-the-dead, which was fine by me.

I knew I couldn't really stay on it when I started trying to get pregnant. The year and a half it took to conceive were marked by a lot of bodily pain to go with the emotional stuff. And I took my pills when it was really bad, in between cycles.

Then I got pregnant. And while I did suffer approximately EVERY hideous pregnancy symptom known to man (numb thigh for five months, swelling so intense it mimicked a sprained ankle on an ER x-ray and required the use of crutches (FOR A PREGNANT WOMAN - picture it, please), intense heart burn from the pregnancy I miscarried through the four months in between and on through the entire pregnancy with Beck (one solid year of heartburn), severe back and neck pain, round ligament pain, did I mention the swelling 'cause my feet were truly a wonder to behold and not at all human. Wait. Where was I?)...

my fibro went into remission during pregnancy. I didn't have wormy pain or bruisey pain or anything other than pain which could be clearly cause by my gigantic midsection and its bodily effects.

Three months postpartum, like clockwork, the worms returned.

Something hurts most days. My fibro is not generally as bad as it was before Beck but some days it is. I credit some of the improvement to the exercise I get with Beck (a couple miles of walking most days) and with my daily two miles of commute walking during the school year. Very mild exercise is a good helper of fibro but I never had much discipline about it (swimming, for example, would involve either arriving at school at 6:30am, or returning there at 6:30pm, and spending a mere 15 minutes in the water after all that pre-showering and with all that post-showering to be done... bleh).

I credit some of the improvement to the fact that I just don't talk about it very much.

When I was going through the Reading Phase after my diagnosis, the most helpful book I read was Pain: The Fifth Vital Sign by Marni Jackson. I am sad to see that it seems to be out of print. Still, copies can be found. If you live with pain, I highly recommend it. It is not at all about how to get rid of pain. Rather, she explains what we know (and don't know) about pain itself and how society has viewed it and dealt with it throughout time. The most amazing thing I learned from this book was this:

The distinction between "mental pain" and "physical pain," our legacy from Descartes, has led to a punishing skepticism about "real" pain versus "invented" pain. The specificity theory describes pain as an event in the periphery of the body that is open to interpretation, and distortion, by the mind; pain that couldn't be connected to an injury or some sort of organic cause was "psychological" and therefore suspect. This theory doesn't account for why one person can be more sensitive to pain than another, and it led to the belief that the intensity of pain is always in direct proportion to the intensity of the stimulus. But the lightest breath of air on the skin can cause severe pain for someone suffering the neuropathic pain known as reflex sympathetic dystrophy (RSD). Long after recovery from an injury, people with RSD can suffer chronic pain, to the exasperation of their doctors. The specificity theory made it possible to blame people for their own pain. Descartes could be called the father of malingering.

- From the excerpt on Ms. Jackson's site.

Fucking Descartes, man. Just what I needed: another reason to hate philosophers.

The reality is that our bodies often experience mental pain and physical pain in the same way. Serotonin and other chemicals that spell happiness are also chemicals that help pain go away. Notice that they often give low dose SSRI's to fibro people? It's not going to cure your depression, if that's what's going on, because the dose is so low. It's working on your body (if it works) to make your pain go away. Mental pain, physical pain = bodily changes and chemical reactions, either way.

This was huge for me. Because it's hard to get past that whole Medical thing where PAIN has a REASON. Nothing was injured so why did I hurt? It now seems clear to me that something is wonky in my brain. Maybe it's the same wonkiness that caused depression and breakdowns and makes me such a raging hellcat loveable cherub to be around.

But the bottom line? Whether you can run a test and discover a problem, whether you can find a source of injury or not, whether you can see what is wrong with me or not...

SOMETHING is wrong with me. And I hurt. And my pain is real. And no fucking writer or doctor can say that it isn't.

I do not keep up on fibro research like I should. I have not investigated the new drug, Lyrica, at all yet, knowing I wouldn't try anyway until weaning. There is a good chance I would first get my Flexeril prescription back and try it on a more as needed basis since I know it works and doesn't have any side effects for me. But I do hope to get back on something to help myself when I need it. I need it far less. I haven't used a cane in years and was surprised to find the snazzy one I bought in Spain when searching for something in the closet recently. It seemed like another me. And no sooner did I think that then I found my knee buckling as I crossed the kitchen the next week. I haven't been able to properly turn my neck in about six months. Today I woke up with intense unexplained knee pain that sort of cleared up by evening. Right this minute my lower back is screaming in agony for no reason at all - I am sitting up straight and have a pillow behind me, and still it complains.

But I do not. I have worked hard to get to a place where I let Wes know when I am hurting but do not harp on and on about it. When I was first diagnosed and when the pain was so bad, it felt like all I ever did was complain. And it felt like that for Wes, too. Then I would feel wounded when he said something about all the complaining, and would try to suck it up and say nothing. But that didn't work either because you can't go around in agony without it affecting your mood a bit. So I would snarl and bite his head off for supremely minor offenses. Or I would shut down and stop listening and curl into myself, unable to handle communicating. I learned that it was imperative that I let Wes know if I am having pain, especially if it's a bad day, and let him help me a bit more but to try not to mention it too much after the initial alert.

Sometimes I inhale sharply when pain surprises me as I climb the stairs at work. Sometimes I limp just a little as I walk. Sometimes my arms turn to spaghetti and I just physically cannot hold Beck anymore and he slides furiously down my body, holding his feet up to avoid touching the ground as I try pathetically to explain that Mommy just can't hold him anymore. If I am lucky, I am with Wes in those moments and he can hold him instead. But often I am not and we just stand there until he chooses stroller or walking. If we Ergo him, I can only do so for a brief time and then Wes Ergos and I carry our tiny downsized backpack version of a diaper bag instead, our normal messenger type bags being impossible for me to carry for any length of time.

I've had a fibro diagnosis for five years now, I don't attend support groups or read message boards and I am not on any drugs. I hurt every day. You probably wouldn't know it.

But fuck you to any one who tries to say it doesn't exist. Seriously fuck you.

weaning update, 5 days in

That toddler gym class really was the final straw I needed to make it possible for me to wean. It took place on my very first day as a StayAtHomeMom for the summer and kicked me right into gear. I want to play and have fun at toddler gym class with my boy like Wes does. I want my boy to be Leader of the Pack like he is normally. I do not want my breastfeeding relationship with him to tie him to me and make him clingy and whiny and weird when we are together. I am ready for the next step.

And so. Friday I told him that nursing was now only for sleepytime. He has had a few moments of tantrums, Friday especially. But his tantrums are rather mild, compared to others I have seen. He screams for a few seconds, he might cry a little. Then he moves on. He can be joked and distracted most of the time. And Wes was home Friday - Sunday. So we worked together. I followed some advice given here on the blog and did NOT stay away from him as it first seemed would be necessary. I smothered him in hugs and kisses and love. There were only a few moments when he tried to crawl down my shirt.

By Sunday, he seemed to get it. On Monday there was only one moment that he freaked a little for the muk in public. All other times, he asks and I say that it's just for sleepytime and he accepts this. He also accepts his cup of milk instead, which is amazing and new.

I am nursing him down for nap but hope to stop that in a few weeks, once I feel secure in our new world order. Night nursing will stay for a while, I think. I can see dropping the nursing before bed (he almost never falls asleep with it anymore and Wes has often put him to bed) but the nursing at 5 or 6 am when he wakes up and comes into our bed... I just shudder to think of giving that up and actually rising from my slumber. Bleh. I know. We will eventually perhaps try bringing him into the bed when he wakes early and NOT nursing, just cuddling. He will scream a lot, I bet, since there will be no distracting. But maybe it will work eventually. I have a lot more faith that this will all work eventually. So far it has been MUCH easier than anticipated. Thank you SO much to all who commented with advice.