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.