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.

©2012 Norwitz Notions. All Rights Reserved.

I’m afraid I was boring this year and brought exactly the same things I brought last year.  But, hey, why mess with success? Every dish was popular.  I picked some lovely greenery from my garden to put in vases and brought the following dishes:

Lemon cranberry sauce	Organic cranberry sauce made with lemon instead of orange.
Edamane salad with roasted red cabbage	Organic cold salad made with edamame and roasted red cabbage.
Pumpkin Pie	Organic vegan gluten-free pumpkin pie.
Cashew cream	Organic raw vegan cream made from cashews, lemon, stevia, and seasonings.

©2012 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

©2012 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.

©2012 Norwitz Notions. All Rights Reserved.

This year, a first-night seder on April 19, 2008, wasn’t the most stressful, but it was the weirdest.  All the food came out well but, otherwise, everything that could have gone wrong did.

I always find dietary and other restrictions to be a challenge (in a fun competitive sense) and I pride myself on creating a safe space for all of my guests, with food they can eat (perhaps not everything, but a decent meal).  But this year pushed me to the brink.

We had our own restrictions: no meat, nothing that Miriam is allergic to (she can get sick from crumbs and I want her to have a few days a year with other people where she can eat anything she wants), no chemical products on the guests, etc, but they’re seamless for us.  And we can still have a full seder.

(In foreground: matzoh plate next to my seat; in background: the main table with Miriam (brown dress), her Aunties Connie and Jan (holding babies), 3 other friends, and Grandma Julie standing at right.  The note on the door to our bedroom warns people not to open it, since that’s where the kitties spent the evening.)

This year, due to medical issues with guests, we had to leave the doors and windows wide open but couldn’t turn on the heat, we couldn’t light our candles (beeswax even), we couldn’t take photographs (except when the reactive guest left the room, so my food and other photos are lacking), we had two guests who invited themselves at the last minute (and one arrived scented and had to scramble to change clothes and wash-up), dinner was completely out of order and late, we had 4 (yes, four) cancellations the day of the seder, there were 2 guests who simply didn’t show up (medical emergency and they had a bad email address for me), oh and we nearly killed one guest (her fish allergy, which we always managed to accomodate in the past by being careful, was far worse that day, and we did more last minute cooking than usual, which made for more fumes)

Add to that the fact that I dropped a few of the usual rituals and customs to save time, but then ended up with even more gone due to the above restrictions.  We didn’t start with eating hardboiled eggs like we have in most years, due to Miriam’s allergy.  Two years in a row now I’ve had the idea of using whole walnuts instead, but then I can’t find any.  We skipped the handwashing and didn’t sing a single song.  And the post meal sections got lost entirely.  No Elijah’s cup, which I’m still upset over.  We only did the hunt for the affikomen.  It felt more like a dinner party than a seder.

Oy.

We were supposed to have 20 guests (including 5 children) but, with all the additions and subtractions, we ended up with 16 (including 4 children).  Three were new to our seder (2 had never been to any seder).

We had two tables.  The main one is our regular dining room table.  Michael always sits there, at the end furthest from the kitchen.  Then we move a buffet and desk back to add another table.  I always sit at this one, in the chair nearest the kitchen (behind the wood doors to the right).

(Main table to left has Grandma Julie (white shirt) and 2 friends; secondary table has my cousin Sara next to Miriam (visiting from the other table) and 3 friends)

Ritual Foods:

Oat flour matzoh
Horseradish
Parsley
Wine
Grape juice
Charoset
Salt water
Roasted beet (an ancient alternative to a roasted lamb shank)
Roasted egg

(Seder Plate: Parsley, horseradish root, roasted egg, roasted beet, salt water, charoset)

Dinner Menu:

Beet borscht
Gefilte fish
Mushroom and olive compote
Baked yams
Pan seared roasted halibut with rosemary
Drinks: Wine (red & white), grape juice, water, seltzer, lemon slices
Dessert: Macadamia Nut Torte

(Connie offers a toast)

(Sara gets Miriam some yams, as a friend looks on)

©2012 Norwitz Notions. All Rights Reserved.

Expo West is held in the Anaheim Convention Center. As disability accommodation goes, it’s not terrible, but of course could be better. The spread out nature of the center, along with few elevators, make wheelchair navigation tedious, and the carpets everywhere don’t help (they are often plusher in the booths, which puts a strain on the shoulders).

The air quality is better than many other places, but that isn’t saying much. Last year, they made a huge effects to make the Expo “green” and they advertised lower-VOC carpets, safer cleaning products, and all sorts of stuff. And it really was better. I noticed the difference right away. This year, the bathrooms were cleaned (during show hours!) with nasty stuff and the carpets were the ordinary toxic variety.

The biggest problem for me is cigarette smoke. Of course it’s forbidden inside, but people smoke right outside the doors (in droves) so the lobby tends to fill up with smoke due to leakage and people going in and out of the doors. A few signs and some comfortable seating areas for smokers away from the doors would ease that considerably.

Driving there is a nightmare. We commuted from LA, which was a 30 to 90 minute drive, depending on traffic (even outside of rush hour). In the morning, the worst of it is in the last 2 blocks. On our first day there, it took us half an hour to go those two blocks, past Disneyland, to the parking lot. Parking is difficult at best (and expensive) but flashing a handicapped dashboard sign was like the key to the magic kingdom. We were ushered in to the main lot where there were plenty of handicapped spots (last year they were hard to get). Note: our friends with handicapped licence plates said that they had trouble getting into the lot because the folks directing traffic didn’t notice them (it’s very crowded and hard to get people’s attention as you get your 2 seconds by the entrance before traffic urges you on).

I would gladly get a local hotel and walk, but I’m not sure any of them will be MCS-safe. The show is toxic enough that I have to have a 100% safe place to go afterwards (we stay with a friend).

Over the next few weeks/months, I’ll be blogging about what I discovered. I shared some finds at the Los Angeles Foodlab get together and I have many more bags of samples and literature to go through.

Here are some of my favorite finds:

* Mary’s Gone Crackers now has a thick straight pretzel shape with new flavors. The best part is that, unlike the crackers, they are soy-free. All their products are organic, vegan, and gluten-free.
* Coconut juice/water was hot this year, with several booths, including some of the bigger ones that sample in the lobby. My favorite was ONE (which tastes like the real thing) but there are other good ones too.
* Gluten-free is also really hot, which isn’t necessarily a good thing. When you depend on a type of product, the last thing you want is for it to become trendy. That’s how you lose it. A couple years ago, the hot thing at Expo West was lowcarb. It had its own section and tasting buffet. By the next year, it was practically gone.
* Gluten-intolerance digestive enzymes. I found these at a booth specializing in enzymes. I am not one to be easily impressed by supplement claims, but these folks knew their stuff. The product is designed to reduce symptoms for accidental exposures to gluten. They are clear that celiacs must continue to avoid gluten. For people with non-celiac gluten-intolerance, they say increased ability to consume gluten is a possibility.

Stayed tuned for reviews of other products, including cosmetics, personal care, candles, pet food, a trillion food products, fiber/yarn, and more.

Reviews so far:

* Safer cosmetics
* Sharkies Organic Sports Chews
* French Meadow Bakery

©2012 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.

©2012 Norwitz Notions. All Rights Reserved.

Information is based on company documents or on personal conversation with representatives. I have not verified facts, aside from looking at ingredient lists and things like that.

No-Miss Healthy Alternative Cosmetics

6401 E. Rogers Circle, Suite 14
Boca Raton, FL 33487
(800) 283-1963; fax: (561) 994-696
http://nomiss.com/

This company mostly produces lower-toxic nail products, the sorts of things most people with multiple chemical sensitivity couldn’t handle, but that could make a significant difference in cases of mild sensitivity or living with someone who must have their polish.

NAILS
nail polish
glitter polish
glow polish
strengthener
base/top coat

NAIL CARE
polish remover
fungus killer
cuticle cream

MAKE UP
mascara
lip gloss
lip healer
eye shadow
make-up remover
kits

They told me that none of the products had synthetic fragrance but some had bergamot (an essential oil). The eye make-up remover has preservatives. The ingredients for the mascara look pretty straightforward and safe. Some of the polish ingredients are iffy (alcohols, etc) but aren’t terrible.

Herbs of Grace: Natural Look Mineral Makeup

301 Young Rd.
Mossyrock, WA 98564
888-817-1831
http://herbsofgrace.com/

Vegan, no fragrance or preservatives. Looks like very simple, basic ingredients. Home business.

Foundations
Eye Shadows
Blushes
Lips
Shimmers
Bronzers
Brushes
Accessories
Vegan Lip Balms
Gift Sets
Samples & Testers

PeaceKeeper

Peacekeeper Cause-Metics
50 Lexington Avenue
Suite #22G
New York, NY 10010
info@iamapeacekeeper.com

http://www.iamapeacekeeper.com/

Some are vegan. Low toxin ratings from Campaign for Safe Cosmetics.

Natural Lipsticks
Natural Nail Polish
Natural Lip Gloss
Natural Lip Balm

Honeybee Gardens

1082 Palisades Drive
Leesport, PA 19533
Tel: 610-396-9225
Fax: 610-396-922
http://www.honeybeegardens.com/

Some products have really nice safe ingredient lists, others have things like methanol and other alcohols (polish remover) and even synthetic fragrance (hairspray, deodorant). At least they are upfront about their ingredients. I have one of their lipsticks and really love it.

Lipstick
Nail Polish
Polish Remover
Eye Liner
Lip Gloss
Truly Natural Mascara
Lip Balm
Shampoo
Conditioner
Hair Spray
Eye Shadow
Deodorant Powder
Facial Toner
Cleansing Gel
HydroSol
Bubble Bath
Goats Milk Soap
After Bath Powder
Aftershave

Naturenvy

PO BOX 6114, Santa Barbara, CA, 93160
(805) 453-9658
ask@naturenvy.com
http://www.naturenvy.com/

“Naturenvy is the importer of a vibrant collection of natural skincare lines produced near the picturesque, seaside port of La Rochelle, France…All Formulas are free of Parabens, Allergens, PEGs, Phenoxyethanol, Silicon, Phthalates, Glycol Ether and Paraffin. All products are free of animal derived ingredients and never tested on animals.”

Sweet’Coton line is certified organic by ECOCERT and certified fair trade by MAX HAVELAAR.
So’Bio Rose is an innovative skincare line certified organic by ECOCERT.
Bio’Etic is a certified fair trade and organic skincare line featuring exotic ingredients.
Floressances offers several lines of natural skincare products such as Argan, Olivier & Bourrache.

©2012 Norwitz Notions. All Rights Reserved.

Fortunately, we discovered the Boys and Girls Club. They are national, and Petaluma alone has 10 clubhouses. We used the main Petaluma location:

Boys & Girls Club Petaluma
Lucchesi Park Clubhouse
203 Maria Dr., Petaluma, CA 94954
(707) 769-5322
http://www.petalumabgc.org/

This is a large building with several function rooms, a gymnasium, a commercial kitchen, a teen room, and a central space with game tables. Most are for rent by the hour. We chose the multi-purpose room, which is quite large, with plenty of tables and chairs. There are lights and electrical outlets, but no water. Bathrooms are across the hall. The kitchen is a couple rooms down.

(Miriam watching her friends play musical chairs)

The cost? $40/hour for the room and $10/hour for a staff person to be on site. We chose Sunday, March 2, 2008, and had the place completely to ourselves. These folks are very accommodating. I didn’t even have to negotiate but they gave us kitchen privileges and an extra half hour before and after the party at no additional cost. They even allowed us to have the gym as a backup for the piñata if the weather was bad. So, for a two hour party and an hour of setup/cleanup, the total was $110 (2 hours for the room, 3 hours for the staff person).

One wrinkle: to rent the space, you must provide a liability insurance waiver. If you have homeowner’s insurance (or possibly renter’s insurance), you simply go to your provider and they give you the waiver for next to nothing. But ours said they didn’t do that. The only other solution was to go with the independent insurance the club recommended. But they wanted $175!! For a two-hour children’s party! Others were similar.

After a day or two of sheer panic, we simply switched homeowner’s insurance companies. We ended up saving hundreds of dollars a year on our premium and the waiver cost a whopping $4.

(Miriam in background with her cousin Jaiden. In front, from left, Aunt Kim, cousin Kalea, cousin Stephanie, Grandma Julie)

A rare trait among public buildings: The Boys and Girls Club doesn’t use pesticides or herbicides inside or outside. They also don’t have air fresheners. (The director couldn’t understand why anyone would consider using stuff like this around kids.) When I went during the week to check it out, the bathrooms and other rooms had little to no scent at all (except for some paint smell in the art room). It was very nice.

The day of the party though, the whole place had a mild but persistent cleaning chemical scent. We opened the windows in the party room and wiped down the tables (they were thick with cleaning residues) with our own cleaner. This made a big difference and the chemically sensitive among us survived.

It’s important to me to be able to provide my own food (too many allergies to risk it) and that was no problem here. Just no alcohol (you can…but it costs extra). And I liked having our own games and other activities, not orchestrated by staff or a preset menu of options.

Partway into the party, some of the older kids (age 6 or so) told me they were bored (they loved the games I had but they weren’t nonstop so they didn’t know what to do with themselves). I resisted the urge to fix it and entertain them. I expressed sympathy and told them what was coming up and went to work on something else. Before I even turned back around, they had discovered the crayons I brought and a stack of paper plates make great fun.

The one thing I wasn’t crazy about with the rental is that you’re required to clean up, or you forfeit all or part of your hefty deposit (ours was $400). That sounds reasonable in theory…until you’re rushing to get folks outside for a piñata (without them going home) and, in addition to picking up, wiping off food residue, and putting the chairs back, you have to scrub all the tables, vacuum the floor (they loaned us a vacuum), and even take out the trash (hey, at least they didn’t make us clean the bathrooms, though I was required to check them). I would have gladly paid the staff person another $5 for a half hour of cleaning, but it wasn’t an option. On the bright side, I totally forgot to take out the trash (it was all in one bag in the can) and they didn’t ding us for it.

The club had some nice outdoor space too. Since it was a gorgeous day, we had our piñata outside. It was a huge errr…hit.

All in all, I was happy with the space. The room fit our needs perfectly. I would have preferred another hour though (people showed up late so there wasn’t enough time to do everything; we skipped present opening and held the piñata bash after the official end time). From an MCS (multiple chemical sensitivity) perspective, it was a decent choice, though I’d look into the possibility of providing them with some cleaning products ahead of time for a larger event.

©2012 Norwitz Notions. All Rights Reserved.

Several years ago, I started taking 101 instead of 5 when heading to San Diego to clean out my mom’s apartment over the course of several months. If you start from the South Bay, it’s only an extra half hour or so, because it’s an extra shlep to get over to 5. From the North Bay, where I am now, it’s more like an extra hour.

Google Maps: Petaluma to Los Angeles

Via 5: 6:20, 413 miles.
Via 101: 7:42, 468 miles.
My experience, via 101: 7 hours each way, not counting stops.

A friend of mine who also has multiple chemical sensitivity (MCS) likes to drive 5 for the quickness factor, but does it at night, when they aren’t out working the fields or dropping pesticides by plane (don’t be fooled though…the crop irrigation sprinklers are on 24/7, and they put out chemicals too). This year though, even she said it was time to switch to 101. I like 101 better anyway. It’s far prettier, with gorgeous views of the ocean, and there are real places to stop, not just highway food and gas stations. Now that I’m doing my travelling with a child, I appreciate the nicer stops too.

I have four stops along the way that are kid-friendly and good for adults too. All are reasonably MCS-safe and good places to picnic, with nontoxic bathrooms. There are plenty more possible stops, but I haven’t checked them out.

MCS Notes: From just north of Salinas to a bit south of King City (around an hour’s drive), the area is solid agriculture. Big corporate (Dole, etc) farms with huge flat fields that get massive amounts of pesticides. There are some scattered farms north and south of this area as well. I manage more or less by keeping windows shut, A/C or whatever to recirculate, oxygen on via nasal canula , and no talking (breathing air through my mouth). The pesticides/herbicides are so strong they will come into the car (Miriam got fairly ill from them) but these measures will help a lot. Be sure to plan your trip very carefully so that you will not need gas or bathrooms for that hour. Before and after you can find oasis’s of clean air.

Stop #1 (A) – Toro Regional Park

Toro Park – 501 Monterey-Salinas Highway 68, Salinas, CA 93908
Hours and contact info: http://www.co.monterey.ca.us/parks/toro.html

Detailed descriptions & photos: http://www.wildernet.com/pages/area.cfm?areaID=CAMOTO&CU_ID=1

Photos & map: http://www.mtycounty.com/pgs-parks/parks-cnty/toro.html

From the north: Take 101 S to Salinas, then get on to 68 S towards Monterey, and go about 6 miles.

From the south: Take 101 N to Chualar River Road a few miles south of Salinas. The road will curve around to the right and become River Road. Take to highway 68 and turn left, towards Monterey. The park is less than 2 miles down.

Picnic areas, playgrounds, and bathrooms are not far from the entrance. We didn’t check out the hiking trails but the park has 4,756 acres to roam around in and 20 miles of trails. We stopped here a year ago and it was a great place for a picnic and to let Miriam play. Since it was a weekday in March, it was practically deserted.

The air quality is not perfect, as it does get some air flow from nearby agriculture. There is nothing directly there but you should keep your windows closed as you approach, especially along River Road. The bathrooms were fine and the playground nearest the entrance (pictured below), with the animals to ride on, was okay. The grass and roads also seemed okay. But some of the other playgrounds had a terrible chemical smell that I couldn’t be near. I think it was the bark.

Stop #2 (B) – Camp Roberts Rest Stop

This is actually two stops, one northbound and one southbound. They are a short distance apart and aren’t connected. The Camp Roberts area is a semi-wilderness oasis, just south of the pesticide/agriculture nastiness. A few farms are south of it, but they are spotty. So the air in Camp Roberts is pretty decent, though it is close to the freeway. I especially like this stop though because it is halfway between Petaluma and LA.

8.5 miles North of San Miguel. Monterey County. South of King City.

Both rest stops have large grassy areas with picnic tables. There is water and the bathrooms are moderately safe, with some residual cleaning chemical smell. No air fresheners. We stopped at the northbound area in March 2007, and the southbound both in 2007 and March 2008.

Northbound:

http://www.dot.ca.gov/hq/maint/ra/ra32.htm

Southbound:

http://www.dot.ca.gov/hq/maint/ra/ra33.htm

Stop #3 (C) – Mitchell Park, San Luis Obispo

Mitchell Park
1400 Osos St
(corner of Pismo & Santa Rosa)
San Luis Obispo, CA 93401

From the north: exit 101 S at Monterey Street. Turn left at Toro Street. Turn right at Pismo Street. To continue south: head northwest on Osos Street. Turn left at Higuera Street. Turn right on Marsh Street. Take 101 S.

From the south: exit 101 S at Marsh Street (202A). Turn right at Osos Street. To continue north: head northwest on Osos Street. Take 101 N.

Looking on the map, there are tons of parks, with and without playgrounds, in SLO. Here is a great list of them, geared for parents, with photos: http://www.centralcoastkids.com/parks/san-luis-obispo.cfm.

We drove into SLO because I heard there was a good picnic area on the main downtown street (not sure which street they meant). We didn’t find that but we stopped to ask someone to guide us to a playground and she sent us to Mitchell Park, which turned out to be perfect.

There was a nice picnic area, lots of grass to run around on, a large big-kids play structure, a smaller toddler structure, and bathrooms that had no smell of any kind. The overall air quality is pretty decent.

Stop #4 (D) – Shell Beach, Pismo Beach

This is very close to San Luis Obispo, so use one for northbound and the other for southbound. It’s fairly easy to find going south, as you pass it and then can take the next exit and double back. But we missed it on the way north. By the time we saw the beach, the exit was right there and the next one was many miles up.

Dinosaur Caves Park
Shell Beach Rd at Cliff Ave
Pismo Beach, CA

From the north: 101 S to Shell Beach Road exit on north end of Pismo Beach. Go about 1.5 miles until you see a playground on a cliff to your right. To continue south: take the on ramp to 101 S that is right at the park (on Price Street).

From the south: 101 N to Shell Beach Road exit. Turn left on CA-1/Mattie Road. Turn right at Price Street.

There are many beaches and parks in Pismo Beach but Shell Beach is right off the freeway and completely gorgeous. Here is a list of parks: http://www.centralcoastkids.com/parks/pismo-beach.cfm

Air quality in this town is stellar. There is nothing bad directly around it and you get clean ocean breezes. The bathrooms at the park were fine, with a slight cleaning product smell, but I didn’t need my mask.

Other resources:

Central Coast Kids has lists of parks and beaches by city, with pictures and descriptions.

©2012 Norwitz Notions. All Rights Reserved.