Owwww, don't do that

New Favorite Show

Anthony Bourdain No Reservations

Feeling Old

I made Dan feel his age awhile ago, by telling him that this young man getting cross-checked in the neck is heading off to college this year. The young man is question is the son of Canton's Lacrosse coach, and Dan remembers him being born. That was back when Dan was the Golden Bear racing up the field a step ahead of the Shamrock player.


And I have to say, after watching them play, that Shamrock is the least accurate sports name I have ever heard in my life. Shamrock implies something small, that can easily be crushed under foot. Not six foot powerhouses with broad shoulders slamming sticks against sticks to shake a ball loose. Actually, those sticks were hitting arms, heads and anything else the ref wouldn't see. Full Contact Sport.

Today's game was the Section X finals, and although Canton kept the game close, Salmon River is ending the season undefeated. Not surprising, since many of their players are Akwesasne Mohawks.

So will this be Nathan next year....


and in 13 years.....


Or do I encourage him to take up Canada's other great sport and enduring pastime, curling?

nana na na, nana na na, hey hey hey, goodbye

More upheaval at home, this time on the job front. Dan couldn't stand working for his boss for one more minute. I won't get into all the details, because that's generally a bad idea on public blogs, but it's really best for his mental and physical health not to keep working for this guy. When the Lodge burned down, we joked about how coming here and working for this guy was an option, ha ha ha. And here it is two years later, and Dan was going crazy from the lack of respect, lack of benefits and general bad management. Even after getting an out of the blue raise, he just couldn't take it anymore.

Meanwhile, another guy that he did respect is opening a restaurant a few towns over. The former owners ran it as a family restaurant, which would be a big step down for Dan food-wise. They're going to upgrade the menu a little, although I'm not sure how far they'll be able to take it in a town with a pretty low median income. There are still a lot of people around here who distrust food that seems too fancy. So instead, Dan will probably have a menu that looks like a steak joint at first glance, but has hidden depths with it's sauces and sides.

I just wish it wasn't so far away, and that gas wasn't so expensive. But if the place takes off, Dan will be getting a cut of the Revenue, so that should take the sting out of the commute. If it doesn't take off.......

R.A. round-up

Quite a bit of upheaval and change after my Doctors appointment today. Problems in the short term that should lead to good news long term. If you want all the boring details, read on.

First, I need to lay out the case for why I've never like Methotrexate(MTX), the drug I've been on since March 06.

1. I have to remember to take folic acid supplements every day or my hair will fall out, I'll get sores on my mouth and I'll get nausea.

2. I have to get a Bilirubin & CBC count every two months to make sure my liver isn't getting damaged.

3. I feel like I have "methotrexate coma day" within 12-24 hours of each weekly dosage. My thought process gets fuzzy and I just want to take a nap.

4. And just to rub salt in the wound, this drug is why I had to stop breastfeeding Claire. (It would also cause servere birth defects if I got pregnant, but that boat has definately sailed.)

Still I have to take it. It did help when I was first diagnosed, although not as much as the Enbrel and Rituximab have helped. I've continued to take it while taking those as well. I thought it was because MTX helped their efficacy, but my doctor gave me a different spin today.

You see, when the FDA does testing for the new biologic R.A. medications, they can not ethically give a placebo to half the test subjects. So all the test subjects get MTX and half also get the new drug. Which means that FDA formally approves it ONLY if it's given with MTX. And my insurance company follows suit. My doctor disagrees. In the case of Rituximab, he feels that the MTX is unneeded and somewhat dangerous given it's side effects. And even though he is on the Board of Directors for the insurance, he can't get the head pharmacologist to agree to dropping the MTX as a requirement for receiving the Rituximab. So for the whole time I was on Rituximab last year, I was still on MTX even though it was really against my doctor's wishes.

Okay, back track a month. I got my labwork for CBC & bilirubin as usual. I do it in Canton, and a copy goes to my doc in Saranac Lake. Someone probably should have checked it more carefully, because my white cell blood(WBC) count was 1.8 (normal is 4-8, er....somethings per somethings...., anyway, it was low.) He had them run another check today and it's down to .8, not good. This makes me very prone to infections, so it's a bit scary.

There are two things that cause low WBC in R.A. patients. The less common is Felty syndrome, which the Doc would treat with Rituximab. More common is MTX toxicity. The MTX is starting to fight off my folic acid supplements and folic acid is necessary for WBC production. So as of today, I'm off the MTX, off the folic acid supplements, off the blood tests every month. WOHOOO. And I can celebrate by having a beer, because I no longer have to worry about the sixth reason I didn't like Methrotrexate.

6. You're not supposed to consume any alcohol while on MTX. Some people have the occasional wine, but with my Mom's history of liver disease I never wanted to risk it. Since I went from Pregnancy, to Breastfeeding, to MTX, I don't think I've had more than a few glasses of alcohol in almost four years. I also thought I'd be on MTX forever, and although nothing would stop me from a champagne toast at a wedding, I didn't think I'd ever have more than one glass at a time, of anything, ever again. (And I'm actually still going to play it safe by holding off on any celebratory beers for another month until I'm sure it's out of my system.)

And to follow up on the low WBC, I got an IV push of folinic acid today. I'll take high doses of that for another ten days, with CBC's done every week to make sure the WBC is up again. Whew!

And that's not all. I'm back on Rituximab today after an ill-fated attempt to use Humira. The Rituximab was wearing off after only 4 months, when I was hoping for a good 6 months, basically because I'm overweight. Plus, it's not too convenient to drive to Saranac Lake for a 4-5 hour treatment 4-6 times a year. I thought the every other week dosage of the Humira would go smoother, but instead I got less relief and giant rashes at the injection site.

A long chat with the Doc confirmed that the Rituximab is probably my magic bullet, and I just need to deal with the more frequent dosage. Or lose weight. And part of the reason for that was the sad updates to my family medical history. Doc uses Rituximab for treating Sjogren's Syndrome (which my Mom and her sister had) and for treating Dermomycytosis (Sarah) and although I'm fuzzy on the details, I know that Uncle Richard was getting an experimental Rituximab treatment last year for a form of anemia. So it makes sense to stay on a treatment that not only helps the R.A., but may stave off other auto-immune diseases that my family may be prone to. Especially the Sjogren's, which is often seen with R.A. patients, and if I do have Felty's instead of MTX toxicity, I'd need it for that too.

I should really invest in some Genetech stock.

No trauma

Nathan came downstairs with a very satisfied smirk on his face and his hands cupped together this morning, tooth #2 clasped firmly between them. No blood, no crying, no fuss. He just yanked it out before getting out of bed in the morning. The tooth fairy is getting extra mileage this week.

More trauma.

So of course Nathan wants to take the gold coin everywhere and show it to everyone. And of course he's wearing pants without pockets today. So of course he dropped it somewhere in the sand at the playground.

I just about had his friend going home to get a metal detector when I remembered that I had four other coins in my purse waiting for the next teeth. So I put on my sneaky shoes and dropped a new coin under the slide, although given that Nathan was right behind me, I came close to being found out.

More details on the box for Joy.....Every time he loses a tooth from now on, he'll put it in the box and in the morning he'll find the money in there. I had a tooth-shaped pillow that did the same thing in my youth. I like the box idea better though, because once all the teeth are out and the Tooth Fairy legend is debunked, I'll put his baby teeth together in the box for a keepsake.

The TRAUMA

Finally got a tooth out. Thank God. Although I'm pretty sure that the damage has been done as far as getting the new teeth lined up properly. How much do braces cost?

For weeks now I've been telling him to "wiggle wiggle" every chance I get. For a little while he was letting me wiggle and pull on the understanding that I'd stop if it hurt. I must have gone too far because that privilege ended two weeks ago. But I managed to get a chance again tonight at bedtime and was able to get it out pretty easily after just a few seconds of pulling. Surprised the hell out of him and me. There's soooooo much blood. Yikes.

So of course he starts freaking out and crying. I stuff a few kleenex in his mouth and carry him (boy he's heavy now) downstairs for a wet washcloth. After a few minutes of sucking on that the curiosity got to him, and he stopped crying so he could look in the mirror. By then I was plying him with an icy pop too. He was pretty tired, it was already past bedtime when this all started, and I think he was anxious to get the tooth under his pillow. So now he's sleeping. Or possibly lying in bed looking at his tooth every other minute. I had to stop myself from trying to do the grab when I kissed him goodnight, because he'll probably keep looking at it for awhile. I put it in a baggy, so I should be able to fish it out when I got to bed.

I'm not going to bother with taking a picture of the tooth. It's so tiny, like the bits of popped popcorn leftover in the bottom of the bowl. Instead I give you a picture of the loot. The box I made last month and one gold dollar. Maybe I'll print up a note from the tooth fairy too. Dan tells me he once got $50 dollars for a tooth, but only because it was going to have to be pulled by the dentist and that would have cost more.

Claire's Three!

 

Past and Present Mother's Day

2002 - Spent the day upset and frustrated because we'd been trying to conceive without luck for a few years. Trying to stay hopeful about the appointment I had with a fertility doctor in a few weeks. Also annoyed because we had plans to go to Vegas and canceled when Dan was promoted-he'd have to work Mother's Day. Dan came home from work and thought he'd done a good thing bringing me some leftover dessert of chocolate mousse in a chocolate box. Except I burst into tears when I saw the "Happy Mother's Day" on the lid. So instead he hauled me off to a local restaurant for a late night snack to cheer me up. He must have done a good job because Nathan was born about nine months later.

2003 - First Mother's day! It was actually pretty rough. Dan working again, and just a few months after my Mom died. But I dragged Nathan over to Dan's restaurant for Brunch and got ooohed and aaahed over so much by the restaurant staff that things perked up.

2004 - Dan working again, do you see a trend here? Dad came to visit, so it was a much nicer Mom's day. We pretty much spent the whole weekend painting and decorating Nathan's bedroom.

2005 - Very, very, very pregnant. Decided to walk to a local ice cream place with Nathan and indulge. (I think, and I could be wrong, but I think Dan was at work) Pleasantly surprised when a woman there strikes up a conversation about the joys of motherhood. Realize later that she'd seen me on Mother's day with no husband around and no ring on finger (too swollen) and thought I was a single mom about to be raising two kids. She was talking to me because she pitied me.

2006 - Had to share this one, it fell on Claire's B-day. But I decided to ignore her and have a Mother's day for Janet and I.

2007 - I'm finally coming to grips with the fact that the kids will probably be out of the house before Dan can take the day off and give me the whole "Breakfast in bed, massage, feet up all day, no chores" Mother's day that everyone dreams of. Not that we did too bad this year. The kids and I had a great morning painting, and playing by the riverside with Zeppo, practicing baseball and making brownies. A little bit of everything. And then Dan was home for dinner, so that's the best part. Although I still haven't gotten a massage.

Spring

Just some pictures of the kids and Zeppo out in the yard. The weather for the last three weeks has swung wildly from hot summer days, to snow and freezing nights. It's made it really hard to organize the kid's dressers when they go from wearing shorts one day, to jackets and mittens the next. Hopefully, we're past that now.


Last picture of Claire with long hair, we got it chopped right after this picture.



I'll take some pictures of the yard soon. Dan went crazy mowing this week to try to reclaim some of the yard for a veggie garden. We bought seeds today, so we need to get moving on that soon. We also want to put a compost pile there, and need to get supplies for that. Plus, we added some more flowers to our flower patch today.

The next step is a classic white picket fence for the front yard, so Zeppo can go out without a leash, and so the neighbor dogs won't be able to add their poop to our yard. It's poopy enough.

Humira is not my friend

My medicine merry-go-round continues. I stopped talking the rituximab a few months ago. Partly because the benefits were wearing off after only about 4 months, instead of 6. Partly because I didn't want to miss 4-6 days of work each year to do the 4 hour infusion in Saranac Lake.

My doc switched me to Humira, and it was only adequate. This is a drug that I inject myself with every two weeks. There was no problem the first few times, but then about a week after one of the shots I got a rash at the injection site. The next week I got a bigger rash a few days after the injection. Talked to the Doc and got some ointment, but it keeps happening. This week, it flared up to a four-inch round circle within a day of the shot, and itched and burned. No fun.

So I came home today to a message from the Doc saying I must be allergic to it, to stop taking it, and he'd get me switched to Orencia. But..... Orencia is another drug that has to be infused. And even though it only takes half an hour, it's going to be a pain in the butt if I have to drive to Saranac Lake every month. I'm hoping he hasn't forgotten that I live 1 1/2 hours away. If I can do it in Potsdam or Canton, it won't be an issue to get the time away from work.

Otherwise, I think the only drug left for me is Enbrel. It's a weekly shot that didn't work so great for me when I tried it a year ago, but it may be my only choice.

Family History

I've been in the mood to get my family trees sorted out. I started an ancestry.com tree, but I haven't wanted to spend $15/month for the full membership. So I'm filling in what I know, and at some point I'll be able to link up my trees with other family members who've been doing their own branches.

I've been doing more on the DuBois side, because that history is all in New York and it's fun to get it untangled now that I live in New York too. Also, growing up, I was more interested in all the Irish ancestors and annoyed with the DuBois line and the constant mispronunciation of the name. But now I think it's pretty cool that I had ancestors who came to the U.S. in the 1600's and decided to settle in the Catskills after someone's wife was kidnapped by Indians. I've also finally solved the mystery of why my Father's Grandfather and Great-Grandfather married Irish-born women. There was a stone quarry in the town the DuBois's lived in, so a lot of Irish came to work the quarry in the late 1800's.

Not that I've completely forgotten my Mom's side. My cousin Mary has set-up a Yahoo group for folks to post pictures and stories, which is really fun. Don't you love this picture of my Nana in Asbury park?

She has an amazing diary from the 3-4 years before she got married. It's very short entries each day, but there is something on every day. Plays, vacations, bowling, going out for drives with boys. I'd love to get that online too. I'd tried typing it up years ago, but it was back in the dark ages of computers and I didn't get very far. I've seen people enter old diaries in blog style, which probably makes searching it easier. I'll have to take a look at it again and see what I can do. Or see if any of my cousins wants to tackle the job.

Take me out to the ballgame

Dan and I are still arguing over whether the kids will play baseball or lacrosse every spring. But I've drawn first blood. Lacrosse won't take kids until Kindergarten, but T-ball will start them at 3 or 4 years old. he he he

So here's Nathan, ready to hit a home run.


Turned out to be more of a dribbler up the third base line. And there were a few foul tips and bunts. He's a bit slow on the fielding plays too. And I think he's trying to bowl the ball. Maybe lacrosse is better. And maybe I should bring the video camera next time so you can all experience the charm of 14 boys and girls who have no idea how to play baseball.

Red Sox Round-up

I'm watching the Sox on the YES network (Pride Power Pinstripes... Puke), and Jacoby Ellsbury just slid into second, then did a fantastic little skip jump when he realized the ball got thrown into the outfield, so he took off and stole third too. I may have found a new love. Not that I'd ever forget Tek.

My baby's growing up!

 

The tooth fairy has been ready and waiting to make a delivery here, and the wait continues. Nathan's bottom two teeth have been wiggly for a few weeks, but there is extra urgency now that their replacements have shown up. We need to get the stragglers out to lessen the orthodontist bill down the road.

The string tonight seemed to help him get a grip for more pulling and wiggling. Backseat dentist's will recommend tying the string to a door and giving it a slam, but there's too much danger of trauma or leaving a piece behind. So we'll skip that.

It may help that his friend Nadia (with the same birthday as him) just lost the exact same tooth we're focusing on. C'mon peer pressure! I was very happy to hear that her first tooth netted her .25 and a tooth fairy box, because I've heard of people giving $20.00 or toys and didn't want to pony up that much. We are going with a shiny gold dollar for each tooth, plus a box for the first one. We'll use the box for the tooth exchange now, and then when we're done, I may take it to store the teeth in for a keepsake.

Mrs. Butterworth can take a flying leap

Have you been in suspense wondering about the output of the McFarland Sugarbush? Well, wonder no more. We've gotten a little over three pints so far, much better than I expected. Although we have to re-bottle things now that some of the sediment has settled, otherwise there's some weird black sludge inside. Yuck. I bought cheesecloth to strain it, but I don't know if Dan remembered to use it while bottling.

For comparison, I took this photo of a big sugaring operation up the road that can make 80 gallons of syrup a day. Here's their evaporator.



And ours.


And here's our finished product. I don't think it's quite fancy grade, it's a bit darker with stronger flavor. But still very nice. And it smells so nice while it's boiling down.

Slight hitch in the proceedings today. Dan went to boil down about 7 more gallons, and it went much faster than usual, and he left it unattended at the wrong time. So now our pot has a burned mess inside. Not quite sure if we'll be able to resume operations.

Dr. Seuss Made me Cry

Sarah was a loving, generous, playful person. And although we shed many tears, there was also an outflowing of love and generosity from all her friends and family at the funeral. I hope it has helped to comfort my dear Aunt Erin and my cousin Patrick and his family.

Sarah loved books, and especially children's books. To honor her, people who came to the wake and the funeral brought books and toys to donate to the elementary school. I think there were probably a hundred books there, and her best friend Phyllis used them to decorate the reception hall, a much needed burst of color and humor after the funeral mass.

Here are some of her favorite books, some books that she gave my kids, and some books that she shared with others.

Superdog: The Heart of a Hero This is an amazing gift. Not just because the story and the illustration are so good, but because the Superhero dachshund shares his name with my childhood dachshund, Dexter. Although my Dexter was much happier lying in the sun than rescuing stranded cats.



A Teeny Tiny Baby was another great gift, that really celebrate new motherhood. My favorite page is when the two week old goes to the botanic garden and the guard says..."Ahhh, and already he's seen the forsythia", because it just expresses how wonderful the world is when you see it with fresh eyes. And now it will continue to remind me of Sarah because of how the sight of the blooming forsythia welcomed us to Maryland and brightened the tables at the reception for her.


The Legend of the Curse of the Bambino It's a kid's book about the Red Sox. What's not to love.


The Giving Tree I've always had my doubts about whether this is really a children's book. It's always seemed to be more for the parents, a reminder that as we give our love and help to our children, it may not always be appreciated, but that we can be happiest when we give without expecting anything in return. My mother had this book for a long time, and I think it helped her when she needed to grieve the illnesses and loss of her mother. It was the center theme of Patrick's eulogy, as he remarked on Sarah's unceasing generosity to her four young nephews and all her friends.



Where the Wild Things Are One of Sarah's prized possesions was a signed copy of this. But even without the signature, it should be in every child's bookcase. I love it because when Max says "Let the wild rumpus start" I give Nathan three pages worth of wild jungle music

Oooomba laka laka, Oooomba laka laka, Oomba Oomba Oooomba laka laka

there's more, but it doesn't really translate to English.



Phyllis talked of two books in her eulogy. She first talked of how the day we heard the news was definately a Terrible, Horrible, No Good, Very Bad Day!

And then she did an amazing job of reminding us all of the fun that Sarah brought to our lives every time we saw her. Who else makes regular pilgrimages to NYC to go to a children's book store? Or decides to memorialize her vacations by taking pictures of an Ernie doll at famous tourist attractions? And who else gives a book to a best friend that has adorable pictures of how best friends still love each other through bad hair days, green spotted faces and pepperoni earrings?


Bad Kitty One last book. I saw it on a table at the reception and thought it was delightful, and funny, and sneakily educational. I later found out that it was her newest favorite, and her co-workers at Barnes and Noble had given it to Patrick to read to the boys. There's going to be copy in my house as soon as possible too. It's an absolutely perfect book to remind me of Sarah.


And finally, a last word from Dr. Seuss.

You'll be on your way up!
You'll be seeing great sights!
You'll join the high fliers
who soar to high heights.

What the @$%*!! is Dermatomyositis!

I didn't know my cousin Sarah was sick, another auto-immune disease. So now I'm completely blindsided and shocked and heartsick to find out that she died last night.

She'd been a silent reader of the blog. I was hopeful that she'd be able to come and visit sometime, I've missed her since we moved away from Maryland. Having her and Aunt Erin around when Mom died and the kids were born was very important to me, and helped so much when most of my family was too far away.

And now I'm soooo sad that I'm not in Maryland, because I want to comfort my Aunt in person, to be there for her as she was there for me. Because as if this wasn't horrible enough, my Uncle Richard died just last month. I didn't get down for his funeral, but Dan and I are trying very hard to make arrangements to go down for Sarah's.

Can I tell you how much I want to scream swear words into the night.

Liquid Gold

 

I was hoping our neighbor would come by with the offer to tap our trees in exchange for receiving a gallon of finished syrup at the end of the season. But he seems to have retired. So instead, Dad dug four buckets and taps out of his barn and brought them here last weekend. We drilled on Saturday, broke a drill bit on the last tree, and now we're waiting. Daytime temps have still been around freezing, so the sap isn't flowing too strongly. But when I got home from work today each tap was dripping a little.

We don't really have the facilities for boiling. If you do it inside, you end up with steaming sap covering the walls and peeling off wallpaper. I'm thinking that I'll try to boil most of it off on the grill on the weekends, then finish it inside. Ideally, we could get as much as 4 gallons of syrup, but that would only be if we had the time and energy to boil down 160 gallons of sap, and I don't see that happening. I'll be happy with a few pints, and the fun of doing it.

My All-star

This is the finale of nearly five months of skating lessons. Nathan actually preformed much better than I was expecting, and hit most of his marks. Only one of the falls was unintentional. He's the only skater with a red shirt and black helmet, so it's pretty easy to follow him in the wide shots. Enjoy.