This will be my last pregnancy update.

I was 36 weeks pregnant on Saturday, September 26, 2009.  40 weeks is the “due date” and 37 weeks is considered “full term.”  But 36 weeks is considered safe and close enough to full term.  It is the minimum gestation to have a home birth, which is what I was planning.

The pregnancy was very very hard on me with lots of fatigue and discomfort, but was going quite well from all other ways of looking at it.  The baby was growing at just the right rate.  He moved a lot and his heartbeat was always perfect.  I had an ultrasound at 20 weeks which showed he was a boy and that everything looked normal. My blood pressure was 110/60 or a bit less every time.  My last midwife appt was Wednesday before this all happened and my blood pressure was normal, along with everything else.

On Sunday, he only kicked and moved twice, at 11am and 6pm, no matter how much I poked and prodded.  And each of those times it was weak and short-lived.  When his position dropped a week and a half earlier (normal pre-birth occurrence), his movement also decreased but he checked out fine and started kicking at normal levels shortly afterward.  So I kept telling myself it was nothing.

Sunday night was the start of Yom Kippur services and we were at synagogue.  When services were over around 10pm, I went to one of the members who was a doctor and got her advice.  She said to call my midwife immediately.  I did and the midwife said to head directly to the ER.  The ER close to our house isn’t very home birth friendly and doesn’t have great OB services so we were going to go to my backup hospital way south of us.  But we already 10 mins north of our home and Michael was too tired to drive far, so we decided to go to Sutter Santa Rosa which our midwife often uses as a backup and where several doctor members of the synagogue happen to work.  The plan was to get monitored for an hour or two then go home.

We arrived about 11pm and were immediately sent up to labor and delivery and put on a monitor.  When I heard the perfect strong heartbeat I felt so relieved and thought that was it, we’d be sent home.  But the heartbeat was too perfect.  It’s supposed to go up and down with movement, only he didn’t move.

My blood pressure was high, in the 140′s to 160′s, with the bottom number in the 70′s I think (hard to remember) and there was protein in my urine.  I had had edema in my lower legs for ages.  Those three things together are not good though and I was diagnosed with pre-eclampsia.

They sent me for an ultrasound.  They do a rating out of 8 points.  He got a 2.  The heartbeat was strong but there was nothing but tiny movements and the blood flow through the cord was impaired.  One of his lungs was collapsed and they didn’t know why.  They told us he was better off outside of me than inside.  They thought his brain was probably not affected at this point and that he would probably be okay, though he’d need some intervention.  A c-section was the only possible choice.

They waited until my midwife Claudette arrived (once in the hospital she became my doula).  I am very anti-c-section except for medical emergencies but I knew this was the only option.  I chose my midwife precisely  because she does not follow mainstream thinking and has the skills and experience to safely help women choose to avoid interventions they are sometimes pushed into.  She told me to have the c-section.

I spoke with the surgeon and the anesthesiologist about my chemical sensitivities and drug reactions and they were very accommodating and worked with me well.  I was still scared to death and crying. But I would do anything to save my baby’s life and this seemed to be it.

At 2am they took me to the operating room.  The surgery was just awful.  No pain or anything but it felt just horrible all around. It was an emergency but not the full-out get the baby out right away kind so I had a spinal vs general anesthesia and they were able to take their time so my internal organs didn’t get too messed up.  Claudette held my hand the whole time and Michael stayed with Miriam in the room where she was sleeping on a mattress the staff set up.

William Gabriel Norwitz was born at 2:54am.

They wouldn’t let me see him.  I had almost no updates.  They had a team of doctors working on him.  He didn’t cry.  They intubated him but it took 3 tries.  I had to stay there for another long long while (I’m guessing half an hour but it felt much longer) to be sewn up.

I went to the recovery room but still didn’t know how my son was.  I knew he had been intubated and was in the NICU and that he had a cleft lip.  Post-surgery, my blood pressure went up.  And up.  At first they weren’t too worried and gave me meds.  But my pressure was more than 200/100 (dipping down to the 170′s or 180′s as well) for a couple of hours after several doses of a couple different meds.  I could tell how freaked out everyone was.  I knew I was in danger of a stroke or seizure or death.  I didn’t care.

They let Michael go see William and told him he was “probably not going to make it.”  I was shocked when I heard this.  I was worried about brain damage but thought he would survive.  We woke Miriam up.  A few minutes later, Michael and Miriam went to see him and Michael asked for some hard numbers.  What are his chances?  He was told “zero.”

I told them over and over again, do not let my son die before I can see him.  It took a very long time but they finally brought him into my room in an incubator.  I couldn’t move my lower body yet and could only reach his hand to hold it.  He looked so unhappy and uncomfortable.  I told them I wanted to hold him.  Our Rabbi was on her way and they were afraid of transferring him before she arrived.  I kept insisting but logistics kept it from happening.

When the Rabbi arrived it still took a while but they did give him to me.  I opened my gown and placed him skin to skin on my chest and arm, then we put a blanket over both of us.  He had the ventilator breathing for him and his eyes were gooey so I’m not sure he could see anything (I still don’t know what color his eyes were).  But he was awake.  Once on me he relaxed and seemed much more comfortable.

I held him for about half an hour while the Rabbi performed a naming ceremony for him.  Gabriel is his Hebrew name.  Michael held him for a little bit as well.  Miriam chose to stay in the room at times and to go out with Claudette at other times.  We gave her many chances to decide what she wanted to do.  She understood her brother was going to die and was very very upset about it.

This entire time was when my blood pressure was through the roof.  I had been getting over a cold and the crying and stress filled my sinuses and nose so I couldn’t breathe at all except through my mouth.  And then my throat started to swell up and I had trouble breathing.  I asked for oxygen and they said my sats (O2 saturation) were fine but I said give it to me anyway and they did.  It helped slightly.  The BP stuff didn’t scare me because I didn’t care at that point.  But my throat swelling did.  I did not want to not be able to say goodbye to my son.  The staff monitored me closely of course but they thought it was stress.

I did not find out until Thursday that my surgeon had given me an antibiotic during surgery that was a “cousin” to penicillin.  (I didn’t quite catch the name but it sounded like Ciprosporin.)  I told him about the throat swelling and how that is the reaction I got to amoxicillin (penicillin family) and his eyes got real big.  He said that was anaphylaxis and that I needed to add that class of antibiotics to the list of ones I couldn’t have.

When the 3 of us had said our goodbyes, we asked them to remove the ventilator.  They said we could have kept it in longer but we didn’t want William to suffer anymore and we knew there was no hope at all he would survive.  His lungs were hard and wouldn’t not inflate properly even though they were putting through pressures that were much higher than any newborn would get.  And his cord blood pH was so low that no baby ever survived it.  And the placenta was small with poor blood flow.

The neonatologist said he might live and gasp for a couple of hours, but he went in just 10 minutes.  Peacefully on my chest, in my arms.  He died with his little thumb in his mouth.  William died around 6:30am, after only 3 1/2 hours of life.

I held him for another hour or so.  My breathing improved and my blood pressure went down to insanely high but out of the danger zone (they’d cheer when it got down into the 170′s).  Michael held his body then and Claudette did briefly as well.  Miriam said goodbye but chose not to touch him.  Then they took him away and began the transfer to send me to my hospital room.

Although my doctors were still from Labor and Delivery, they put me one floor down, in Cardiac & Telemetry, in a private room.  Losing a baby is a rare occurrence in that hospital and they treated me with the utmost respect.  For my entire stay, every single person, from my nurses to the dietitian, was told what happened before meeting me.  Claudette had brought my birth plan (which had my chemical and medication restrictions listed) and my door sign, which they put up (asking perfumed people not to enter).  They also put a sign on the Purell dispenser outside my room asking people not to use before entering.

They took some care to get me unscented nurses though we had some laundry product issues.  Other staff with scent stayed away or worked with me by phone.  And the next morning Michael brought some safe liquid soap that staff used instead of the sink soap dispenser. With the door closed and the air conditioner on (the window didn’t open) my room wasn’t too bad.

I left for home Thursday late afternoon.  It’s been a difficult recovery, with lots of physical pain and a lot of work to find pain meds I tolerated that worked.  My blood pressure is still not normal but is mostly in the 140′s and 150′s now.  They gave me meds when it spiked to 161 and I spent the night feeling like half my head had been sawed off (this while being on heavy narcotics) so I know now that the recovery room migraine was caused by Labetalol (as opposed to any of the 100 other things it could have been caused by).  And I know I tolerate Toperol (anti-inflammatory) and Dilaudid (narcotic). My incision is healing well but I have welts and blisters and severe itching from the bandage adhesive.

My synagogue, Congregation Ner Shalom, was amazing and, between them and friends and family, I  had visitors and phone calls nearly around the clock, which comforted me to no end.  Being alone were the worst times, especially night and early morning. Although we had to delay the burial, we counted it as sitting Shiva.

As of Saturday afternoon.  I can get out of bed by myself (that feat took several days), use the computer, use the toilet, and stand for brief periods of time (a minute, maybe two).  I took a shower in the hospital which wiped me out and caused terrible pain.  I took one at home yesterday but needed much help with it.  Today I used a borrowed shower seat and was 95% independent.  I am eating and drinking normally.

We will meet with the neonatologist in a couple of weeks when all the test results are in.  They are waiting on some pathology slides and a chromosomal report.  But the diagnosis so far is pulmonary hypoplasia.  Or severe underdevelopment of the lungs, which were 1/10th the size they should have been.  This condition is usually secondary to other issues but, in this case, they think it is caused by a random genetic disorder, which also caused the other birth defects, and led to the failing placenta which led to my pre-eclampsia.  They say it is not related to my age or health but can happen to anyone, though it is rare.

The funeral was yesterday.  It was brutal but I needed to see him buried.  The cemetery is walking distance from our house with trees and grass.

That’s about all I have in me for now.  Thank you again to all who have visited, called, emailed, prayed, or otherwise supported us through this.  It means more than I can say.

William Gabriel Norwitz
Born and died September 28, 2009
10th of Tishrei, 5770

Goodbye my sweet boy.

©2010 Norwitz Notions. All Rights Reserved.

Miriam kisses her brother (22 weeks)

I had something similar during the second trimester when I was pregnant with Miriam, but this is worse.  And I’m well into the third trimester now.  Two huge increases/additions to my thyroid meds have helped, and so has being diligent about taking my supplements.  July was also a busy month, with preparations starting long before.  My brother Mike got married!  We took a trip to Los Angeles.  I helped plan the 2009 Festival of Fruit.  And California went through several heat waves.

Miriam as a flower girl at her Uncle Mike's wedding 7/19/09

So here I am, 31 weeks (7 months) into this pregnancy, and starting to feel a bit better.  Some news:  It’s a boy!!  We had an ultrasound at 20 weeks and the little sweetie was mooning us.  Even Miriam could tell his sex.  All the other measurements came out perfect too.

And, yes, we have a name picked out.  The first name comes from Michael’s family and the middle name/Hebrew name is just a name I’ve been drawn to for a long time, for unknown reasons.  We’ll announce them after he’s born.

So far, I’ve gained 20 lbs and have been craving fresh vegetables, fresh fruit, fish, and pickles (fermented/pickled anything really).  Miriam is still nursing, though usually not very much.  The house is a disaster because I haven’t been able to do any sorting and organizing like I was in the first trimester.  The plan is to get it all done before the birth (sure…).

Things are going well with our midwife and we’re still working towards a home birth with a hot tub in the living room.  I am getting backup care with the midwifery group that works at the hospital where Miriam was born.  And of course I’m getting endocrinological monitoring through-out.

Cyndi at 28 weeks

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I carry big and have looked seriously pregnant for a long time.  I look about 5 months now, not barely 3 months.  But I’m far enough along that I love it.  Aside from the obvious, that was my favorite thing about being pregnant last time: I actually look thinner.  I’m an “apple” so I have a ton of excess weight in my gut but, when I’m pregnant, it blends with the baby bump and all looks like part of the same thing.  I don’t look skinny or anything but I do look like I’ve dropped a couple of dress sizes.

Cyndi at 14 weeks

I chose a midwife and have seen her twice now as we plan for a home birth.  The only negative is she isn’t very scent-free, though she’s been trying.  I can’t be in her house at all because of new carpet and fragrances.  Fortunately, she lives in the same town as me and is willing to do the visits at my house, which I greatly appreciate.

She was here at 11 weeks and used the Doppler to try to hear the baby’s heartbeat and no luck.  But she heard “placental circulation” which was good enough for me.  Plus a couple days before that I saw my MD who did a quickie internal exam and said my uterus was big like it should be.

When the midwife was here last week (normally early visits are a month apart but we started late and she wanted to give me a chance early on to hear the heart) we did the Doppler again and got a heartbeat, which was really cool, though not a surprise   I got Michael on speaker phone and he was able to hear it too.

My uterus is measuring big (as it did a couple weeks ago).  About a centimeter higher than it “should” be.  With my last pregnancy I was carrying so big I was sure I must have twins but my uterus measurements were always dead on.  This time I’m even bigger (despite weighing slightly less) and my uterus is actually “too big.”  Coupled with the higher than average HCG doubling blood tests, the midwife confirmed my suspicion that this means an increased chance for twins.  I really had to push her though because she didn’t want to quantify it.  Finally I said, okay is my chance of having twins 25%, 50%, or 75%?  She said 25%.

This is my last pregnancy almost certainly so having twins would be great because it means I can have 3 kids.  But overall, neither Michael or I really want twins.  We have friends with them and, while they’re both amazing kids and they play with each other and all, we’ve seen first hand just how much work it is.  And they have 2 parents who work at home and no other child.  The very idea of twins freaks Michael out.  I would be okay either way I think but I’m still hoping for just one.  At least if it is twins I don’t have to worry about the birth.  My midwife will still do a home birth with twins, as long as they’re at least 36 weeks.  [As a side note, no you can't really tell from the heartbeat how many there are, not at this gestational age anyway.]

So far everything looks good.  I have a lot of sudden-onset bouts of tiredness, as well as milder longer ones, and haven’t been able to exercise for a while, but overall I’m decent (you know, the usual stuff).  My lower back and hips have been hating me for a while now and I have to be careful how I sleep.  I can’t be on my stomach anymore (I don’t sleep like that; I mean for anything) and being on my back is starting to get unpleasant (not from cutting off circulation, just uncomfortable).  Wish I could get weekly bodywork.

Miriam has just been thrilled and talks to the baby (“does it have ears yet?”) and kisses my belly regularly.  At 11 weeks, the midwife gave her a plastic doll that is the size and proportions of a 12 week fetus.  She played with it, pretending to carry it in her tummy.  I told her a bit what birth was like (contractions then pushing the baby out) and she loves to emulate the experience. I explained that the pushing was kind of like a difficult poop.  Michael chimed in with “but the poop is THIS BIG” and oh did Miriam’s eyes get wide.

She’s now decided she wants to be a midwife and she is going to deliver the baby herself (“me and you mommy”).  Though she agrees the actual midwife can be there too.  Michael said, you know, when the baby comes out it’s covered in blood and goo and stuff.  Miriam answered “that’s okay, I’ll wear short sleeves.”  She’s also requested birth videos.  The ones the midwife lent us either didn’t show the birth (personal DVD) or were scratched.  So we’ll be looking around (can’t do online video well on this computer).

It’s going to be an interesting ride…

©2010 Norwitz Notions. All Rights Reserved.

Being a green mom I’m opposed to 1) spending lots of money on something meant to be used once and 2) buying new plastic/vinyl.  Being someone with multiple chemical sensitivities though, I’m not able to just pop into Goodwill and look for used costumes.  I didn’t want to take the time to make something either.

I found a used Superman costume on Craigslist from someone who said there was no fabric softener.  I didn’t notice a scent on it when I bought it (but then I didn’t notice the rip in the seam either) but it came out after being washed.  Miriam said it itched and I wasn’t sure what I was going to do.  But it turns out she was okay if she wore clothes underneath it (which was a good idea anyway because it was cold out).  I just washed my hands after every time I touched it and had her change immediately upon coming home.

Miriam & Michael fly off to Halloween storytime at the library

Last year, her first time trick-or-treating, we found exactly one item in her bag that she wasn’t overtly allergic to and let her eat it.  She bounced off the walls for a while then gladly agreed to trade in the rest for daddy to take to work and she got to pick out a toy from a local store.

This year they went trick or treating in a more popular area so the treats were smaller.  This meant far less chocolate, her biggest allergen.  About 2/3 of the candy was chocolate, orange, or something else she reacted to (like the treat from last year, which has dairy) and it went into daddy’s bag (traces of dairy or gluten aren’t problems for her and she can eat each of those as treats once in a while, but egg, chocolate, and orange are not okay ever).

I snagged the one good thing in what was left for myself (peanut butter taffy, yum!) and she had a taste of it.  Then she got to pick one candy for herself with the caveat that we didn’t know what might have orange so she was taking a risk that she might pee her pants.  She had a sour cherry lollipop (the round junky kind with a chewy center, which made for some amusing expressions as she’s had almost no candy in her life…she now says she wants to give away all the chewy candy).  She did some bouncing around and we explained that it was the sugar (actually, it was probably mostly the artificial crap).

She is keeping crayons and a tiny joke/coloring book she received. We did take away a smartie necklace she was wearing because it was orange colored and smelled like orange.  She willingly gave it up when I told her that.  We went and washed hands and neck but she’d been wearing it for a while and did end up having to pee in the middle of the night, though no accidents.

The deal is, and she’s totally cool with it, is that she will get a toy (she was okay with my picking one out and not telling her in advance…anyone know a cheap source of a real working stethoscope?  I’ve been wanting an excuse to get her one for ages) in exchange for the candy in daddy’s bag.  As for the rest of the candy, she can keep it or exchange it for the Yummy Earth lollipops I bought her (two flavors I know are orange/grapefruit/tangerine-free…I can’t buy from the bulk bin, only separately wrapped bags of single flavors) or for another toy.  So far, she’s opted to have a Yummy Earth treat each night.

I am really happy that we could encourage her to trick-or-treat with abandon and not worry about what she was getting.  That would ruin the fun.  She still gets her treats (edible and otherwise) and she had a blast Halloween night despite the drizzle.

I stayed home…I can’t risk the cigarettes and pesticides I’m sure to encounter.  And I already had a headache.  Maybe next year I’ll go with my gas mask on and let people decide if it’s a costume.  I hate missing so much of the fun stuff in her life, but I’m grateful that, so far, she’s able to participate in them herself.

Halloween day, Michael’s office had a Survivor (TV show) dress-up theme, complete with an eat-gross-things contest.  His special treat was deep-fried crickets (“but, Cyndi, they’re not traife”).  Oh, and a big bag of chocolate.

Miriam & Michael prepare to go trick-or-treating

©2010 Norwitz Notions. All Rights Reserved.

Indian Mary Park
Uninc Josephine County, Oregon
7100 Merlin Galice Rd, Merlin OR 97532
(541) 474-5285
Connected to the Oregon State Park system but run separately, through the county.
http://www.co.josephine.or.us/Page.asp?NavID=491

Directions: Take I-5 North or South to Exit 61. Go under the freeway and turn left on Merlin Galice Road, which turns into Merlin Road, for about 3.5 miles. Merlin Road turns slightly left and becomes Galice Road.  Continue another 7 miles to the Park entrance on the right.

A friend of ours goes there every year with a large organization that reserves a block of spots near the Rouge River and provides all the meals.  And for that sort of trip, this place would be awesome.  The river is gorgeous and the park has a communal feel because all the sites are very close together.

Miriam at the Indian Mary boat launch

Unfortunately, we weren’t with a group and the closeness of the campsites was overwhelming.

Our tent in the middle of several campsites

That’s us in the middle with an RV to the far left, an empty site to the immediate left, three sites behind us, and one RV to the right.

Between the stifling heat (98 degrees in early evening) and being surrounded by cigarette smokers, I ended up with a fall down asthma attack in the center grassy area at the front of the picture (beyond it is the bathrooms) while trying to escape the smoke.  I had my oxygen tank but not my inhaler and Michael was off with Miriam at the playground.

Fortunately, I was able to call for help and, after several tries, some folks (including a paramedic) heard me and got my inhaler and my family.  Miriam cared less about the fact that mommy was sick than about the fun of getting to ride in the park’s golf cart.  The smokers near to us were very kind and all said they wouldn’t smoke near us anymore.  And they didn’t.  But the damage was done.  I was fragile over the next couple of days and had trouble walking any distance.

Before the attack, we managed to get our borrowed tent up (first time since the dry run at home).  This was my first time dealing with a tent, or camping at all, in over 20 years.  Michael had never done real camping.  It was Miriam’s first time.  Not the greatest (re)introduction.

It only took us half an hour to get this baby up

The night went more smoothly.  I had chosen an RV site vs a plain tent site because the former had electrical hookups and water and we had an electric cooler.  The tent sites weren’t very different or less crowded.

Our campsite

We ate from the cooler, went to bed, roasted, took off the rain flap, roasted slightly less, tried to block out the partying around us, and fell asleep mostly hating the place.

Then it was morning.

Morning at Indian Mary is magical.  Everyone else was asleep, the air was cool, and Miriam wanted to see the river.

Rouge River in early morning

Once we were away from the campsites, the air at the park was very clean and fresh.  They don’t use pesticide at the park and they only use herbicide once in a while at the boat launch (most recently 3 or so months earlier).  I walked slowly because my legs were still unsteady and my lungs not at full capacity.  We made our way to the top of the riverbank, where Miriam, naturally, had to stop for some blackberries.

Miriam picking blackberries along the Rouge River

Then to the boat launch where she expressed her deep down desire to go fishing (one she has repeated dozens of times since…some day little one).

Miriam for a morning walk and yoga pose in her jammies

Then of course we had to make our way to the playground, where her visit the day before had been cut short.  We couldn’t stay long because the other campers were waking up and the cigarette smoke began to waft over.

Children's playground at Indian Mary Park

Unless I came with a very large, smoke and bug-spray-free, group, I can’t see myself returning.  As solo campers who wanted to sleep early and weren’t interested in socializing (drinking beer around the campfire with strangers), this was completely the wrong spot.  For someone with asthma and MCS, it was a nightmare.

Nominally, the park is pretty safe.  No pesticides, almost no herbicide, no air freshener in the bathrooms (they told me they use strong smelling cleaning products but we must have been there between cleanings because it wasn’t a problem).

The bathrooms have flush toilets and small shower stalls with tiny changing areas.

There is the playground for the kids plus lots of flat grassy areas, a Frisbee (disc) golf course, volleyball, horseshoes, and a place to boat and fish.  We were there on a Thursday night in mid-August so there were plenty of free spaces, though it was mostly full.  The better sites were of course taken.

Take a look on the map.  We were in site 74.  If I went again with a child, I’d want site 46 (preferably the entire surrounding chunk).  The map is somewhat misleading because those distances are actually quite close (it’s also not entirely to scale).  Many other park maps look similar on paper but they fit half as many campsites in the same space.  From us in 74 to the smokers/partiers in 85 was about 20 feet.  You can see their white car behind and to the left of us in the two site pictures above.

We packed up and got on the road by mid-morning.  On to another two nights of camping.

©2010 Norwitz Notions. All Rights Reserved.

Like anyone else who doesn’t remain homebound, I get whammed once in a while. Depending on what the chemical is, I’m usually okay after a few minutes or hours (with a few notable exceptions!). I may need to shower and change, or use oxygen, but I recover. More chronic exposures are the ones that get me, and I almost never have those anymore.

Last week, a friend of a friend passed away and we went to the funeral on Thursday. I couldn’t tell if there was anything bad at the mortuary but there were large numbers of people wearing fragrance (why?!). The ceiling was high and I wasn’t in terrible shape, though I got a headache.

The next day, Friday, we went to the widow’s house for shiva (visiting the mourners who are sitting at home for a week) and I was exposed to scented candles (unlit). It wasn’t terribly strong and I stayed away from them as best I could. That evening, I had dinner in someone else’s home where the condo itself is safe but the association sprays outside (nothing recent; I didn’t notice anything, but I get a bit worn down when I’m there).

Saturday was a party at a home that is mostly safe, but there are lots of little things here and there, and various scented people. Also a long drive to and from past cities and refineries (air on recirculate of course, but some gets in anyway).

By that evening, at a very safe meeting in a very safe building, I was toast. Burnt soggy toast.

Any one of those exposures would have been enough to get me for a few hours, some with headaches, but they would have cleared. Put them all together and I’m a dysfunctional mess.

I had a revelation that day, yesterday. The fuzzy head, the inability to feel properly inside my body, the feeling that someone else was talking for me, not being able to focus, going to a lecture and knowing there was no way I could take notes, and of course the constant background headache and body pain and just plain malaise…that’s how I felt all through grad school.

That’s why I couldn’t get work done. I wasn’t “sick” persay, most of the time, but I wasn’t there. It isn’t a lack of motivation or desire, but I couldn’t pull back and look at the big picture. I was stuck, moment by moment, in a body that didn’t function and a brain that was like mush.

Grad school was when I was diagnosed with MCS (the symptoms started earlier but mostly didn’t interfere with anything, except going places with cigarette smoke). But I always assumed most of my inability to do my work was emotional. But here I was yesterday with the same feelings, the same dysfunctions, all clearly caused by several mild to moderate exposures adding up into one big neurological tangle.

I’ve been having other symptoms as well. Migraines, focused joint pain in my left little finger and left ankle, and edema in my lower legs, something I used to have regularly but haven’t had for about 3 years.

I take care of myself these days. I do have exposures here and there, but I spread them out and don’t take foolish chances. So, for example, I’ll go shop at Costco, but I won’t go down the laundry aisle. Or I’ll go to a lecture, but I won’t go to an outdoor rally. It is possible I was exposed to something I don’t know about (like a pesticide, though I haven’t been getting any of my other usual pesticide symptoms) or this could just be about repeated exposure.

I’ve been lax since Miriam was born about taking my supplements every day and other things that used to be necessary to keep me going. And I’m not always good about doing all the other things I need to do.

Survival Techniques:

* When returning home from an event with an exposure, immediately put clothes into the laundry (don’t sit on anything).
* If there is any chance of lingering chemicals, shower and wash hair.
* For really bad exposures, take charcoal (drink extra water and don’t eat or take anything else for 1-2 hours).
* Take vitamin C. Lots of it. Repeatedly.
* Take other supplements. Basic multi, B’s, other antioxidants, etc.
* Eat fat. Good organic fat.
* Drink lots of water.
* Eat protein and fiber and no junk.

I woke up with a nasty migraine this morning and then realized my hair smelled like perfume. I hadn’t smelled anything on me before (and I had been changing my clothes and rinsing my face, arms, and head) but here I was violating my own rule. So I showered and washed my hair and had Michael change my pillowcase. The headache went down into the background.

I have more commitments that will involve exposures but I will be cautious. Tonight we went for Kaddish (the prayer for the dead, which requires a minyan (10 Jewish adults)). The scented candles were lit this time but the house was full and I knew there was more than a minyan there, so I stayed outside while Michael quickly explained things and we left. We will return during the week when fewer people will be there and the candles will be unlit.

I lived like this for years. Constant symptoms, always in crisis, small exposures pushing me over the edge so I felt like nothing I did was safe. When you have chronic exposures, it becomes impossible to figure out symptoms and causes from timing or anything else. They meld together. So sometimes you think the entire world is dangerous or that it is really all you and not anything external.

When you take care of yourself, these chronic symptoms go away. I’m not cured, obviously, but I do pretty well when I am careful. So many people new to MCS (and many who are old-timers) haven’t learned this yet. Sometimes it’s because they live someplace where it is impossible to get away from exposures, or they must work and it’s not safe there, or they know the lesson but had too many chemical injuries and now have severe damage.

It’s hard to pull yourself out of the world enough to make your life safe for you. It’s easier to make excuses. I don’t get worse when I use my shampoo, so there must be nothing bad there. Except that, with a chronic exposure, there is no way to know.

Leaving grad school and giving up my career and dreams was the hardest thing I ever did. I had no choice at the time: I was simply unable to do the work. Not working now, and giving up on my other possible careers, is equally hard. Missing out on social opportunities and parenting networks, losing religious community (I can’t go into most of the synagogues around here due to pesticides and perfume), limiting my outings. All very difficult. But doing it has made it possible for me to have a life. A child. A spouse. A brain.

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