Sunday, November 14, 2010
On the other hand, I'm terrified that I will never again care who won an election, never stay late at school because I'm dedicated to my kids (who are someone else's universe and deserve that kind of care). I am scared I'll never write again.
About a week ago, I failed the 1-hour glucose screening with a score so off the charts that I wasn't given the 3 hour test -- I was just flat out diagnosed with gestational diabetes. Fun. Fun. Fun. This reminds me of all of my diet issues from a few summers ago when I was trying to repair the wild blood sugar swings that prednisone and weight gain had given me. I'm finding that things don't affect me in a textbook way and that I really use simple sugars and carbs to help regulate my system. In some ways, they are way more effective than the cheese sticks and mixed nuts I am trying to rely on now.
I can do this for 2and a half more months because I have to, because it's my babies we're talking about. But I couldn't live like this. I remember writing this post and it really summarizes how discouraged I get when I try to control my health through my food. I totally get the flaw in my logic when I say that controlling my food may make no difference in the death rate for R.A. When food issues are so absolutely hard for me, and it might not help in the long run, I want to say "Why try?" Except for the next few months, of course.
I haven't been very good at tagging my posts dealing with food type issues and the research I did when I was diagnosed with high cholesterol and again when I tried to go on the South Beach Diet. I will have to retag them all but here's a list for now.
Basically, what it amounts to is that my cravings for certain foods may be linked deeply to the genetic fault that causes my rheumatoid and narcolepsy. That should be good news, should give me hope that I can reverse things by eating the right way. Instead, that crushes me because I really don't think I have the will to do that, and suddenly there's a level of responsibility and self-blame implied there. It's enough to make me run for a Dr. Pepper and a candy bar.
Sunday, October 10, 2010
Being pregnant isn't that big of deal. I mean really, it's the act that keeps the species going (besides the act that got me pregnant in the first place) so it's pretty routine, species-wise. My fellow humans have been conceiving, carrying, and giving birth to babies quite routinely for a long, long time.
But for ME, for my subjective existence on this earth, this is a pretty unique 9 months. For one thing, I'm carrying a boy and a girl and suddenly I'm rethinking all my opinions on gender and society at the moment I'm trying to buy onsies. (Really, is it all that bad to want pink things for my girl? Will it kill her? And what about the boy? Is it wrong to not buy him pink things as well?) All of my beliefs on disability and ability are challenged every time I am offered a pre-natal test, or when I decide whether or not to take a medicine.
What I'm finding most baffling and unexpected, but also the most welcome, is how my belly opens doors (well, not literally but it could) and starts conversations. I'm included, I'm asked about how I'm doing, I'm part of the circle of women in the teachers' lounge. I've always felt sort of excluded, no matter where I taught. For one thing, I was "just" an implementer, aide, para, special ed teacher, etc. I wasn't in a classroom of 22 like they all are. My kids are usually the "extra" kids, the ones with disabilities, the ones who are slightly outside the main life of the school. I've also always been the new kid -- job and life circumstances have caused me to job hop, so I've never been in a building more than a year and 1/2. Here, I am new to this small town, new to everyone and their family units, don't have children in football, wrestling, or 4-H. On important things, politics, religion, big ideas in education, etc., I try to keep my mouth shut because I know I will disagree with most everyone. I'm not afraid to speak out, but speaking out when we're trying to choke down lunch is counter-productive.
I'm strangely "one of them" now. I don't understand it but I don't begrudge it either. My big belly invites questions about due dates, names, epidurals, feet swelling. And yeah, I suck up the attention like the giant sponge I'm starting to resemble. This is the most baffling, wonderful, and vomit-inducing few months of my life and I like -- need -- stories of those who have been there before. And everyone is eager to share them.
They are also eager to accommodate me. When I say I need to sit, I get to sit. I bring a bar stool out to duty instead of standing on my feet to direct cars as they pull up and greet/supervise the kids as they come in. I'm late, I'm thirsty, I need a second. My husband too is eager to watch out for me. Which is nice, because I'm becoming more and more impaired physically by these two little aliens who still only weight about a pound a piece.
What I'm finding about becoming more impaired by my little darlings is that I'm reminded of having a rheumatoid flare. Sometimes, for no reason whatsoever, things hurt. The other day, a bad combination of standing too long, a fiber one bar, and two little babies suddenly sitting on my bladder had me walking slowly, painfully, with a pronounced waddle. My stomach was immediately my calling card -- people knew to stay out of my way and even smile sympathetically as I crashed through the grocery store to get my reflux prescription. A few weeks ago, I rode an electric cart through Wal-mart when my feet hurt too badly to consider walking any more. At the mall, I have to sit and rest. It takes too long to go to the bathroom with the layers of maternity clothes. I sometimes feel sleepy or bad for no reason. And all this is understood.
Pregnancy doesn't really prevent me from doing anything, but it makes everything a tiny bit harder. Sorta like rheumatoid. I can never predict what is going to be harder (except bending over to get things off the floor -- that's a given) but I'm always surprised by it. Reflux, foot pain, late for school because I was throwing up? That's the world of the pregnant chick.
What happens next year when I feel bad for no reason other than having rheumatoid? When a knee locks up and I waddle through the grocery store? When I have to use a cart and my handicapped sticker? I'm so grateful that people understand me now and I'm almost angry that I've never had that sort of understanding before and I won't have it again.
The other day, as I was explaining that I'm really hoping to avoid bed rest, a colleague said "What's more important? Your job or the health of all 3 of you?" I can agree that our health is more important, but I've never allowed myself to think like that for more than a day or two. MY JOB is more important because I have to convince my bosses, my colleagues, and everyone else that I CAN do the work, that I'm NOT disabled, that I WON'T be a liability. Suddenly, I'm a ginormous liability and it's okay. It's liberating but strange.
My little sister suffers from debilitating migraines and is in constant danger of losing her job. Her HR director sneered at her, "These headaches of yours are getting old." My sister wanted to say, "Tell me about it." Pregnancy is temporary and wide spread enough that it's okay. It's understood. Bosses, colleagues, loved ones are much less accommodating when it's a condition that doesn't go away in nine months.
I sometimes think about how much harder life itself will be when I'm trying to schlep two babies around. It's so far out of my realm of experience that I can't even imagine it. And I think that's my life with rheumatoid -- no one WANTS to judgmental or frustrated with me when I'm slower or sicker one day than I was the day before. It's just out of their range of experience. At least now I have one more metaphor -- "It's like being pregnant without the belly." Not sure it will get me very far. Meanwhile, I'm enjoying being understood in a way that I never expected.
Monday, August 30, 2010
I find myself even more fiercely pro-choice, even as I find myself deeply attached to every burp, flip, and kick in my growing belly. I was always pro-choice since about the age of 15 or so, once I was able to understand that the issue wasn't about baby-killing but about a woman's right to choose what happens to her body. But somewhere, there was always a twinge of doubt in the back of my mind.
I understand now. This isn't a pregnancy; it's an alien invasion. My moods, my body, my health, my sense of self is increasingly tied up in these two non-beings. How I feel about the world depends on the flood of hormones hitting me at any given time. (I started crying when my husband said he couldn't fix me grilled cheese because of lack of bread). It's a hijacking. I'm sharing my body. It's like the last chapter of "Beloved."
It's okay. I've consented to this take over of my rights, my body, my self.
I can't imagine how horrifying this is for someone who hasn't fully consented to it and does not want it. I've secretly sometimes thought that people with unplanned pregnancies should stick it out and give the baby up for adoption. I now realize what that would entail.
I even ran into a case where someone was terminating a pregnancy based on a child's disability, something I oppose with all my being. But I could not bring myself to feel anything but sadness for her and her impossible choice, even as I've spoken out against selective abortion before. I expected to feel some sense of private condemnation of her, but I could not.
It's a paradox -- many many anti-choice people are mothers who assume because they loved every second of their pregnancies and consented to this invasion of their minds and bodies that everyone else should love it too. I almost think of it as akin to a sex act -- to consent to share your body with someone else does not mean that you would feel the same about the same act if you did not give consent.
Wednesday, August 4, 2010
From Arthritis Today
[...]Children of mothers with celiac disease had a 197 percent increased risk of autism, while children of mothers with rheumatoid arthritis had a 56 percent increased risk. Those with moms who had type 1 diabetes had a 114 percent increased risk.[...]
One more thing to worry about.
Sunday, July 11, 2010
I had my second appointment where the doctor and I talked about the risk of Down Syndrome. I'm in a strange situation in that I want to know if I'm having a baby with Down Syndrome, but only because I want to be prepared. I will be over 35 when I deliver. (Hopefully. My little aliens better stay put till after my birthday!!!) I especially worry about the medical implications of any chromosomal condition. Heart and cardiac conditions are linked to Down Syndrome. Trisomy 18 scares me even more because children with Trisomy 18 typically don't survive very long. I can deal with long term disability, but not with death. I've never been good at that.
We decided to forgo the screening because I would not discontinue the pregnancy regardless of the outcome. And therein is the heartbreak in prenatal screening -- knowledge but no power. I remember being at the Canadian Angelman Syndrome Society conference in 2004 and hearing about a microarray -- a way to screen prenatally for Angelman as well as many other syndromes. I was horrified. In a society that devalues the lives of disabled people, where inclusion has made great inroads, but hasn't done enough yet, how could anyone make a fair decision regarding the life of a disabled fetus -- not yet a person, but already a diagnosis?
Then, in 2006, I heard some researchers talking about the possibility of giving pregnant women who were carrying children with AS massive dosages of supplements to methylate the father's silent 15th chromosome. It might allow for some mitigation of the symptoms of Angelman Syndrome.
THAT I could get behind. If prenatal testing let me know that my child was going to have Down Syndrome, and that I could take supplements to decrease the risk of heart involvement, line me up.
It's easy to have my mind on spina bifida, Down Syndrome, etc. etc. because those are some of the hard parts of parenting that will apparent from the start. School bullies and high school proms and drinking and all the others hazards of bringing humans into this world are safely in the future.
In speaking of developmental disabilities in a round about way...
I forgot to mention how helpful the OTIS people have been. I called and talked to an intern about all the medicine I'm on. A few days later, a counselor called me back and we talked for about an hour about each of my medications, the risks, the benefits, and what the studies say. We also talked about vaccines.
There are plenty of studies saying vaccines aren't statistically related to autism. There are plenty of people who swear those studies are lies. I think that statistically, probably, vaccines don't "cause" autism.
But the problem is, babies aren't statistics. At least two people I've met personally with autistic children said their children spiked terrible fevers after their vaccines and then never recovered, but instead started showing more and more signs of autism. These children both have classic Kanner autism, not Asperger's. (However, one child was three when I knew him. All reports now say he is extremely high functioning in academics and things like that, so he might be considered to have Asperger's now).
Then there is the troubling issue of the Hannah Poling case, where a family was given compensation for the underlying metabolic disorder that developed into autism, triggered by her vaccinations.
Then there is the person I worked with, my age, extremely developmentally impaired due to almost non-relenting seizures that started the night she got her vaccinations. I look at her and think "that could be me." Then there is a story told to me by a really trusted supervisor about a healthy baby boy who died the night after his vaccinations.
There are way too many fanatics out there who like to think that vaccines are a government plot to poison us. I don't think that's true. But I do think, like anything else, vaccines are a medical decision that comes with risks and benefits. I will vaccinate, but I will research the schedule and probably do an alternate schedule.
(2017 Edit: Research has discredited the vaccine/autism link. As soon as my kids were born, I very much decided that we would vaccinate against all the things. I know vaccine reactions are possible, but I had absolutely no medical reason not to vaccinate, and vaccination is the responsible choice both for my children and all the people around them. I cringe that I once doubted the evidence.)
Being pregnant makes me walk the walk more than I expected. I say I love the kids I know with autism, with Angelman Syndrome, with Down Syndrome. Then I have to think about the possibility that my child may face some of these conditions. On one hand, it makes me think I'm a hypocrite because I want everything to be perfect for my babies -- I want them never to have to struggle, never to have to hurt. And disability is a very obvious struggle they must face. I've seen kids bite themselves in frustration, unable to speak, but needing badly to express. That breaks my heart. No one wants that for their child, any child. But on the other hand, I would feel strangely almost honored to have a child with a disability. I'm enough in this world to know how amazingly, heart-wrenchingly HARD it is, every day, and I'm almost afraid to type this, in fear that typing it makes it true. (Sort of like how I watched "Make Room for Multiples" every day the week before I discovered I was having twins.)
As I type this, I keep holding in my head the picture of a kid I had in my class this year. He has Down Syndrome. I love to brag on his academic skills -- his academic development is nothing short of amazing. There are areas he needs to catch up on, but man... he is a rock star. I gave him the same spelling words as all the other 5th graders and more often than not, he'd get an A. But that's not why I love him.
He was just an amazing soul, the kind of kid that makes everyone around him better. His typical classmates, his disabled classmates, teachers, parents... he just has a radiance.
(Not that we didn't have our moments, mind you...)
I've known maybe a dozen people with Down Syndrome in my life to the point that they would know me. There are other people I know with D.S. that I didn't get along with, that I found hard to be around, so I'm not generalizing and expecting every person with D.S. to have this child's gifts. But if my children are anything like this boy, D.S. or not, I would be so blessed.
Friday, June 25, 2010
This is what I saw on the ultrasound screen June 10th.
Those two little blobs. The OB/GYN immediately shows her student observer. "Isn't it funny, those two in there?" she was saying and I was looking at the screen."So is that the head and that's the body?" I asked, not getting it. "No, it is two. It is twins," she says.
I was already flat on my back or I would have fallen over.
When the appointment was over, I sat in the truck in the parking lot. My phone was not working well so I had to use headphones to call people, and it still sounded garbled. I called Dave, who was out of town, showing the house we're selling to a realtor. I think I heard him fall against the wall. I left a message for my mom.
I blame TLC, all those Make Room for Multiples shows I was watching during the week I found out I was pregnant and withdrawing from provigil by dozing on the couch all day.
That was at 5 weeks because both babies have a yolk sac? Now I'm 8 weeks tomorrow and fearing Vanishing Twin Syndrome, where one twin disappears in the first trimester for no reason. I'm also realizing I will never find moms like me (oh it felt strange to type that!) on the 'net for support -- rheumatoid, twins, over 35 when they are born. (They'd better not come before then!!!) I'm a triple high risk and couldn't be happier!
I also realize that my dreams of accessible parenting may have to give way to whatever crap we can afford from garage sales. Seriously, the Babee Tenda crib from the last post is almost $1000. Times that by two now and it looks like I'm just going to have hurt my back bending into a traditional crib or get one adapted. Those Tripp Trapp chairs that would allow baby to eat with us at the table and not have me leaning over a plastic tray --that idea is now replaced by a standard Graco garage sale high chair. (For $15 bucks mind you! SCORE!) And I think I can safely forget cloth diapers with nice adjustable velcro closures -- my little pooping machines will probably do more than I can keep up with.
Still, I'm happy. I keep hoping those little guys will stay put for at least 28 more weeks -- twins are considered full term at 36. I'd prefer them to hang in there until week 40 though.
Thursday, June 24, 2010
As for me, I'm off all rheumatoid meds for the first time since 1992. Only taking a prenatal vitamin and my sertaline, which I'm tapering off. I feel so amazingly good to be off meds. Those of you who only take meds when you have the cold or flu have no idea!
Tuesday, June 8, 2010
So, I'm starting to think about what will happen in 8 months.
Sunday, June 6, 2010
I know that I shouldn't be blabbing about being pregnant until week 12 because of the risk of miscarriage. Chemical pregnancies, where the egg is fertilized but does not implant, are really common -- I saw an estimate of 50% or so. In a chemical pregnancy, a pregnancy test (or two, in my case) will be positive because the body does have the pregnancy hormone. It just is negative a week or so later and the cycle goes on as normal. So I've been waiting all day, thinking that this week of pregnancy will probably be it for me. Playing at being momma was fun, but my period will start any second. I was crampy and sad.
Thank goodness for google. I'm finding that backache and menstrual-like cramping are common signs of early pregnancy! Suddenly, I was excited again! My first real physical symptoms! YAY! Until now, my symptoms have been vague and more consistent with being narcoleptic and off of my medicine than being pregnant. Aside from two positive pregnancy tests and sudden obsession with every twinge in my body, I'm not any different from how I was two months ago. But the backache -- there's a sign I can point to and say "oh yes, I'm pregnant."
Convinced hubby to walk around the block with me and now I'm going to have some ice cream and go to bed. Life = good.
Friday, June 4, 2010
a lot of it.
So, I've known about junior for a week now. I'll be an estimated 4 weeks along tomorrow. I have taken 1/2 of a provigil in that time, for my drive back from visiting my mom.
Like back to the sleep addict days before my provigil, when I could sleep for 14 hours, wake up, then take a nap. My husband isn't home and I'm out of school, so I just sleep.
I've called the OTIS people and they haven't called me back. In the beginning, my doctors and I agreed that I would continue to take provigil while pregnant, even with the slight increased risk. But since I'm not at work and not driving anywhere, it seems downright selfish to risk it. When hubby comes home and I have a reason to at least be ashamed of being asleep more often than awake, I might reconsider.
I still let myself have 1 glass of caffeine a day. That's probably about the same risk as the provigil. That 1 glass though is in the form of Dr. Pepper, which has 40-75 ml of caffeine depending on the size. 200 ml is the "unsafe" threshold.
I've stopped taken my Enbrel. I had originally thought about continuing it throughout pregnancy, but my rheumatologist and I decided I would stop after conception and see how it went from there.
I'm still on my sertaline and plaquenil. The plaquenil still wakes me up every night two hours after I take it with terrible stomach cramps. Lovely.
Oh yeah, and my mom and I are taking grandma back to England in July. I'm not sure I can do this. That will be a month from now, where nausea will kick in in full force if it's going to kick in, and taking care of grandma is always a struggle anyway. She will fuss over me and it will drive me nuts. But I want to see the England fam again and my sister is going to be there.
Okay, enough whining. I'm still amazingly happy over this whole turn of events. Married, buying a house, having a kid -- who would have thought that I would end up being the traditional one of my family?
Organization of Teratology Information Specialists (OTIS)
Provigil Pregnancy Registry
Saturday, May 29, 2010
Saturday, March 6, 2010
It is almost like grief. In my mind, there is another me, the healthy me. Not the me Before, but a me that I never was.
She plays on the graduate student flag football team. Her skill and agility astound. When the play gets too rough, She laughs, rolls up her sleeves, and gets bruised and dirty. When She walks to the bench, She doesn't limp. When the ball comes at her, she doesn’t cringe. Afterwards, She drinks a few beers because, hey, She's young and has a healthy liver. She goes to concerts and dances. And She comes home and grades papers instead of collapsing, exhausted, in a heap.
But She never existed, even before I got rheumatoid arthritis. I was always anemic, a condition very common in people with R.A. And, honestly, I was wimpy. Uncoordinated. Scared. Was that because of this disease that lay dormant in my T-cells, waiting to attack, or was it just me? Is there even a difference?
I want to be her very much. On my porch, there is a barely ridden Trek mountain bike. I bought it off of e-bay two summers ago. It stands, rusting, as a monument to her. There are other monuments – my backpack, an inflatable kayak, a pair of running shoes, and, most importantly, a T-shirt from a marathon She completed. This wasn't fantasy. This really happened. For 26.2 miles, She and I were the same girl. We share some race T-shirts, too, postcards from hard trails we’ve climbed. Those were golden moments, finishing the race on my feet, still running, hips sore, knees spongy, but still running. These were moments where she let me live inside her skin.
I miss her now, on nights like these. My left knee has started that persistent muscle ache. It seems funny that the muscle should hurt so much, when it is actually something happening deep beneath it causing the pain. For some reason, my own immune system cells are hungry. Instead of viruses or bacteria, they have turned to the synovial fluid inside my joints. The left knee is the main course tonight. Any tensing of the muscle around the knee pulls at the tender joint and makes me think I’m going to collapse in a heap. I look for her, but She has fled.
She belongs to the joy, the triumph. She won't sit with me while I type at 4 a.m., knowing that the pain will keep me from sleeping, so I might as well compose an ode to her. She won't sit there in the doctor's office with me as I try to tell him about this nagging pain in my lungs, secretly fearing the possibly-fatal lung and heart complication that some people with R.A. get. She isn't there where I put off the weekly dose of pills one day longer because I can taste them rising the back of my throat when I look at the bottle.
No. I've learned that pain is like grief and you really have to face the void alone. Others can help. I remember one long night when I was in San Diego and my fiance, teaching in Missouri, stayed awake for four hours, talking to me through the pay phone in the dorms, while I cried against a yellow cinder-block wall, unable to stand back up and get to my bed. It helps, but only in the way that a neighbor bringing over a chocolate cake after a funeral helps. Sooner or later, you gotta stand up, let the wave hit, and see if you're still standing.
But I don't blame her for fleeing now. It's hard to be around me when I'm like this. Last week, confused by the dizziness of a swollen knee, I ran smack into a wall before passing out. Then I threw up all over the fiance. My fictional counterpart never would have done that.
Maybe I should get rid of her. She's sort of a pain in the ass. She doesn't understand when I am taking the bus instead of walking. She's always questioning, "Are you hurt or just being a wimp?" She doesn't understand how this constant war waged against my body by my immune system can turn me into a walking zombie. Some days, I'm a sleep addict – all I want is sleep, all I think about is getting more sleep. She bounces a few steps behind me and says, "Speed up, you slow poke! What is WRONG with you, lazybutt? Shouldn't you be grading papers?"
To get rid of her, though, would be a loss I have no words for. Sometimes, I see her in my mind's eye, dancing somewhere, because she can dance, or pedaling away, and I smile. To leave her now would be to leave the idea that one day, on some days, when the combination of elements and medication and mood works for me, I can dance with her. This is why I haven’t dumped her yet, why I am learning to tune out the insults she hurls at me when I take the bus.
After almost 14 years of this, about half of my life, I can see that the pain isn't the challenge anymore. She is my challenge. To reign her in, to not have her dance so far ahead, not to run wild on the football field, but to be happy sitting with me at the sidelines. To have her push but not insult. She is my disease and therefore the dancing partner I never wanted, but she makes me dance all the same.
Sunday, January 3, 2010
Well, I’ve had this for 24 hours now. It’s probably going to be returned when I head to Best Buy next week. Not because of any flaws in the netbook – I’m pretty addicted to it already. But although the earnest Best Buy guy promised it was upgradable and sold us 2 gig of RAM, this mini is definitely NOT upgradable. I woke up this morning to pieces of the Dell all over the table as husband made that discovery. I’ve had my XO for several years now and never took it apart like that – and the XO is designed for that.
Still, the netbook is proof positive that I’m sorta giving up on the XO for now. It is a wonderful piece of technology for what it is designed for. However, if I may state the obvious, it was not designed for my situation. I badly would like to get a stack of XOs for my classroom, but I would eventually come up against something I couldn’t solve – how to print, how to mesh, how to make abiword work. And although I LIKE the fact that I have to rely on the community and learn how to make it work, I’m also realistic about what I have time to do and not do. I’m already struggling at my job because I don’t turn in the TPS reports – I mean the curriculum based measurements – on time, which is whenever they ask for it, which is usually by yesterday. Part of me wants to construct knowledge, but part of me knows that dammit, we don’t have time to construct. My school and my job depend on prepping kids for a test that doesn’t care how they feel about knowledge, or school, or themselves. It just knows 4 things about them, whether it considers them Below Basic, Basic, Proficient, or Advanced. And all my kids are working against disabilities that the test doesn’t care about. Will a bunch of XOs raise test scores? Will the tech people support a bunch of XOs?
It’s too much, I think, for a first year special ed teacher with her job in jeopardy to try. At least this year.
I haven’t given up on XOs. But really, I just need something that works easily all the time. Next year, if I’m still around, I’ll apply for a stack of XOs. But until then, I have to go for ease and what works for my situation.
So, I'm sitting here, typing in bed, with my Dell when I usually am messing with my XO or, lately, my Palm Pre. But man, life is so much easier with this Dell so far. I'm not fighting the XOs clunky's operating system. I love the XO for what it is. It launched the netbook trend. I still feel fine handing it over to the kids and letting it be experimented with, dropped, drooled on. I'll still be able to throw it in my backpack without worrying about it. I don't think I'll let the kids use my netbook at all.
I'm amazed though, at how easy it is to use, so no fuss, like my XO. But it's so much more functional. I can type on it. It does not make me fight the internet every time I want to get on.
Still, in deference to my XO, I installed Open Office instead of shelling out for yet another copy of Micro$oft Office.
I'm going to see how the Open Office works out with interfacing with school software.