Karl and Brooke are at a birthday party, Sanna has a friend over, and we've all just been fed. The house is in a state of reasonable calm, and, well, I have missed writing here.
I was thinking this afternoon that one year ago, I was too weak to do much of anything. I was more or less house bound two days each month, could sit in a straight back chair long enough to eat a meal but not much longer. Today, although I have had some recent setbacks, I can do almost anything I need to do: install shelving in the rec room, work all day on cleaning and organizing a room (stopping only for beer), and actually honestly work out. Me. Work out. Weird.
In December, I was having more pain in my hands and feeling not so awesome with the side effects of methotrexate. I've never been worried about being too graphic here, but let's just say that my mucous membranes were under siege, and what should not have been uncomfortable made me feel like I was being split in two with every bowel movement. My hair was falling out in greater amounts, and I had to get it cut short to keep it light and fluffy. There were other ways in which I was being a wimp about MTX, so I asked, and Dr. R2 dropped me to 17.5mg.
Two weeks later, I was at my PCP's office with a hot, prickly sensation over my back and chest. The PCP nodded solemnly and told me it was one of three things:
1. A virus of some kind, in which case it was probably self-limiting
2. Medication reaction to the MTX (unlikely because my dose was now lower and I had been on it so long)
3. Some kind of disease process related to my arthropathy
I took Zyrtec for a few days, and it went away.
In January, around the time I was due for even more bloodwork, I was thinking I was feeling even less awesome and wanted to go back to 20mg. I was also in a massively stressful situation at work involving reduction in force, and I had to lay off one of the incredible and amazing people I work with. And my elbows broke out in some kind of eczemous rash--just my elbows, just the tips of my elbows. The rash resisted hypoallergenic lotion, Aquaphor, and hydrocortisone. I went back to the PCP, nodded solemnly and told me it was one of three things:
1. A stress reaction of some kind, in which case it was probably self-limiting
2. Dry skin
3. Some kind of disease process related to my arthropathy
But this time, I left with drugs.
I went for my routine bloodwork only to find that my white count was low enough to merit another dose adjustment.
I've been experiencing some of the extreme neck pain I dealt with around the time that we moved, bad enough to make me rummage through bins for any leftover Tylenol-3. I didn't find any, so I have been self-treating with leftover prednisone. It has made the neck pain manageable and allowed me to get by with more regular chiropractic adjustments.
We joined the Y in town a couple of weeks ago, around the time that I started being able to feel even worse from the dose adjustment. I worked out four times last week and four times this week. It's hard, no doubt. I'm convinced it's worth it, even though it means leaving the house at 5:30 just for a 30-minute workout.
Readers who don't know me in real life probably don't know that I was once a pretty good swimmer. I competed regionally, placed highly locally, and was recruited to compete in college, offered the opportunity to swim for tuition, even. Instead, the day of the last regional swim meet of my senior year of high school was the last day I swam over that long, black tiled I, the last time I wore a cap and goggles, the last time I felt the spiraling plastic lane markers brush my shoulders. I had been swimming, worn a suit and splashed in the water, lazed about next to a plastic slide with my kids, but I had not truly done any swimming in 15 years.
Until last week. I bought an appropriate suit (then returned it for a larger size! I have grown more than I thought since high school!), goggles, and a latex swim cap. On Fat Tuesday, I slid into the shallow end of an unoccupied lane 10 minutes after the Y opened. I ducked under the water and pushed off, and I swam. When I got to the other side, I took a breath and let muscle memory take over. My flip turn was fluid, natural. It felt really good.
It's okay that I'm not doing awesome. I will find a balance with drugs, maybe try out a new inhibitor of inflammation that's due to be approved in August (tofacitinib) if Dr. R2 and the insurance will let me, and the exercise. I am still considering training for a local triathlon, or rather, I am going to train as though I'm doing it, and maybe I will actually compete.
Saturday, March 03, 2012
Thursday, March 01, 2012
Celebrate good times
It's March. Today is Brooke's birthday.
Sanna also turned 6 last month. (44.5 inches and 39.75 lbs. Big enough for the next series of carnival rides!) I guess I was too busy living it to write.
Sanna also turned 6 last month. (44.5 inches and 39.75 lbs. Big enough for the next series of carnival rides!) I guess I was too busy living it to write.
Monday, December 19, 2011
Dude. Christmas is hard. It's not just Christmas. It's working and being a parent and a partner and trying to nail this exercise/running thing. I'm kind of pathetic, totally interested in my stats from my little Nike iPod doohicky, ignoring the good people of the internet from whom I have drawn so much support over the years. It sounds sarcastic, maybe, but it's true.
Here's a question. If I put the funny things the children (and I) say on Facebook, would you want to read about them there?
Think about it.
Here are some:
Sanna asked to take something for the food drive at school, and I gave her a choice of soup or chick peas. "I'll take the soup because I like chick peas."
Me: "If we ate food from the food pantry, wouldn't you be excited to see chick peas there?"
S: "I'll take both." (No small feat since she has to drag both cans around until the afternoon, along with her shoes, lunch, and full metal water bottle.)
Sanna, late one night in bed: "Mommy, I can't sleep. I keep thinking songs over and over in my head. It just keeps going, 'Jingle bells, jingle bells.'"
me, telling Sanna to keep getting ready for the day: "If you're going to eat your oatmeal, there's no time like the present."
Karl: "Where's the present? Who has a present?"
Karl told me about his teacher at school who has "a little mustache all over his face" and was just a little appalled when I told him he'd grow hair on his face when he became a man.
Children who will not pick stories because they want to set up the nativity set get the gospel read to them. Just FYI.
You know who plans a party for children at 5pm on a weekday? Sadists. Sadists and people who think children should have a stay-at-home parent.
Karl appears to be under the impression that the reason we eat plants is that they can't outrun us. He had a very detailed dream that Papa S made him a gun and gave it to him for his birthday. The gun was made of yarn and wood and paper and tape and had water in it for squirting. This gift arrived at the right time, because there was a bear coming out of our house and Karl squirted it with his gun.
Here's a question. If I put the funny things the children (and I) say on Facebook, would you want to read about them there?
Think about it.
Here are some:
Sanna asked to take something for the food drive at school, and I gave her a choice of soup or chick peas. "I'll take the soup because I like chick peas."
Me: "If we ate food from the food pantry, wouldn't you be excited to see chick peas there?"
S: "I'll take both." (No small feat since she has to drag both cans around until the afternoon, along with her shoes, lunch, and full metal water bottle.)
Sanna, late one night in bed: "Mommy, I can't sleep. I keep thinking songs over and over in my head. It just keeps going, 'Jingle bells, jingle bells.'"
me, telling Sanna to keep getting ready for the day: "If you're going to eat your oatmeal, there's no time like the present."
Karl: "Where's the present? Who has a present?"
Karl told me about his teacher at school who has "a little mustache all over his face" and was just a little appalled when I told him he'd grow hair on his face when he became a man.
Children who will not pick stories because they want to set up the nativity set get the gospel read to them. Just FYI.
You know who plans a party for children at 5pm on a weekday? Sadists. Sadists and people who think children should have a stay-at-home parent.
Karl appears to be under the impression that the reason we eat plants is that they can't outrun us. He had a very detailed dream that Papa S made him a gun and gave it to him for his birthday. The gun was made of yarn and wood and paper and tape and had water in it for squirting. This gift arrived at the right time, because there was a bear coming out of our house and Karl squirted it with his gun.
Tuesday, October 25, 2011
Kale Tale
I have a dozen other things to do (reviewing several documents in both original and commented form, writing a report, and counting some really old oncologists), but right now, I owe us some blogging. Let’s be honest, however, that you’re not really here and that I only owe myself some blogging, as it’s been a while since I wrote anything over sixty words that I wasn’t paid to write.
Things I eventually want to cover:
1. My trip to the rheumatologist last month
a. My health
b. Perfectionism and mommy guilt
2. Behavioral bullshit
3. Our first vacation as a couple since our honeymoon
4. Kindergarten
There’s probably something else, but when I sit down to do this blogging thing I rarely remember any of the hilarious things that happened recently. However, one I do remember: I’ve been wearing my iPod Nano on my waistband lately because I’ve been using the pedometer and also doing some jogging lately (see 1a), and Sanna noticed the little apple/Apple logo on the back of it and asked what it was. I mentioned that the company that makes iPods being called Apple and she was uncertain if she should believe me. Karl proclaimed it silly. I carried on explaining that when parents who work for that company go to work, they say, “Bye! I’m going to Apple!” Karl rolled over on the floor howling in laughter. Sanna became more skeptical. “Really?” Yes, kid, really. We settled on the parents telling their kids that they’re going to work, but I may have convinced her in the end that the company is really called Apple.
I’ve started Couch to 5K using the podcasts here. I have a strong preference for the alternatives she offers to her standard hip hop choices, but that’s a NTM thing. I’m on week 3, carefully timing these around methotrexate dosing and our other activities like the kids’ swimming lessons and Brooke’s pilates, but it’s working okay. It’s that time of year where I’m going to have to think about an indoor track or deciding that I’m going to run around in the cold. So far, it’s all outdoors, but it’s never been under 40F on any of my runs.
Upon the recommendation of people who know these things, I went to the local running store to get a proper fitting. I don’t know if I’ve ever discussed here how I have freak feet. They are theoretically a reasonable and normal size, but I am at a point where I buy all of my casual and dress shoes via Zappos. I purchase literally 8-16 pairs of shoes in an assortment of sizes (all narrow) to my doorstep and then try them on in the comfort of my own home. Due to the size of my orders, I’m in their next day shipping club and can place an order at 5:30PM and have them at my house before I get home from work the next day. I then return all but one or two pairs and only pay the retail value for those shoes, no shipping. It’s amazing. So I was only a little surprised that the specialty running store didn’t have anything that would fit me. They were able to order exactly three pairs that might fit, only to find out that one was discontinued and another was being redesigned and wouldn’t be out for two months. The third pair fit, thank goodness.
It was while I was waiting for that third pair to come into the store that I saw the fabulous Dr. R2 last month. Brooke and I agreed that I could fly solo, that we’d have no new information, nothing new to discuss in terms of options, so I went alone. I know why people prefer small private practices: the personal service, the familiar relationship with the physician and staff, and the access to everything when you need it. I’m thrilled with (most of) my experiences at the big giant research and teaching hospital, and I’ve had a great experience with very familiar relationships with several of my physicians, starting with the GP who called me at home on a Sunday to tell me my MRI of the brain was normal. Dr. R2 is no different. She asked after Brooke and the kids, told me she thinks of B when driving past B’s workplace. R2 is as thrilled with the improvement in my well being as I am. I like her. If I had had time to deliver it to her office, I’d have given her my beer when I started methotrexate.
My appointment was much conversation, a few updates, and a regular joint check. I reported hitting the local running store for a proper pair of running shoes, and she approved, impressed I found time (I used my lunch hour). We talked about finding time to do everything with two working parents, and she sounded overwhelmed. “I was buying Chinese for dinner at Whole Foods, and I’m in line behind this woman talking about putting kale into smoothies, and I’m like, how am I going to do that?”
Maybe it’s my laid back nature (no, honestly) or my unwillingness to get into mommy competition and mommy guilt or even my recent bout with inflammatory autoimmune crap, but seriously, it’s not worth it. Don’t compare. Don’t feel like you have to do everything. Do what you can. Do what’s fun. If everyone is fed and clean enough to avoid an infection AND LOVED, you’ve done enough. Order takeout and read together on the couch for ten minutes. Pack sandwiches and go canoeing. Give everyone a graham cracker while you wait for the macaroni and cheese to finish boiling. Sorting out last season’s clothes is just gravy; sit down with a glass of wine and calm the fuck down.
But what I said was, “Kale is really good on its own. Olive oil, garlic, and salt. It’s wonderful.” And what she said was, “If you can start running, I can eat kale.”
Things I eventually want to cover:
1. My trip to the rheumatologist last month
a. My health
b. Perfectionism and mommy guilt
2. Behavioral bullshit
3. Our first vacation as a couple since our honeymoon
4. Kindergarten
There’s probably something else, but when I sit down to do this blogging thing I rarely remember any of the hilarious things that happened recently. However, one I do remember: I’ve been wearing my iPod Nano on my waistband lately because I’ve been using the pedometer and also doing some jogging lately (see 1a), and Sanna noticed the little apple/Apple logo on the back of it and asked what it was. I mentioned that the company that makes iPods being called Apple and she was uncertain if she should believe me. Karl proclaimed it silly. I carried on explaining that when parents who work for that company go to work, they say, “Bye! I’m going to Apple!” Karl rolled over on the floor howling in laughter. Sanna became more skeptical. “Really?” Yes, kid, really. We settled on the parents telling their kids that they’re going to work, but I may have convinced her in the end that the company is really called Apple.
I’ve started Couch to 5K using the podcasts here. I have a strong preference for the alternatives she offers to her standard hip hop choices, but that’s a NTM thing. I’m on week 3, carefully timing these around methotrexate dosing and our other activities like the kids’ swimming lessons and Brooke’s pilates, but it’s working okay. It’s that time of year where I’m going to have to think about an indoor track or deciding that I’m going to run around in the cold. So far, it’s all outdoors, but it’s never been under 40F on any of my runs.
Upon the recommendation of people who know these things, I went to the local running store to get a proper fitting. I don’t know if I’ve ever discussed here how I have freak feet. They are theoretically a reasonable and normal size, but I am at a point where I buy all of my casual and dress shoes via Zappos. I purchase literally 8-16 pairs of shoes in an assortment of sizes (all narrow) to my doorstep and then try them on in the comfort of my own home. Due to the size of my orders, I’m in their next day shipping club and can place an order at 5:30PM and have them at my house before I get home from work the next day. I then return all but one or two pairs and only pay the retail value for those shoes, no shipping. It’s amazing. So I was only a little surprised that the specialty running store didn’t have anything that would fit me. They were able to order exactly three pairs that might fit, only to find out that one was discontinued and another was being redesigned and wouldn’t be out for two months. The third pair fit, thank goodness.
It was while I was waiting for that third pair to come into the store that I saw the fabulous Dr. R2 last month. Brooke and I agreed that I could fly solo, that we’d have no new information, nothing new to discuss in terms of options, so I went alone. I know why people prefer small private practices: the personal service, the familiar relationship with the physician and staff, and the access to everything when you need it. I’m thrilled with (most of) my experiences at the big giant research and teaching hospital, and I’ve had a great experience with very familiar relationships with several of my physicians, starting with the GP who called me at home on a Sunday to tell me my MRI of the brain was normal. Dr. R2 is no different. She asked after Brooke and the kids, told me she thinks of B when driving past B’s workplace. R2 is as thrilled with the improvement in my well being as I am. I like her. If I had had time to deliver it to her office, I’d have given her my beer when I started methotrexate.
My appointment was much conversation, a few updates, and a regular joint check. I reported hitting the local running store for a proper pair of running shoes, and she approved, impressed I found time (I used my lunch hour). We talked about finding time to do everything with two working parents, and she sounded overwhelmed. “I was buying Chinese for dinner at Whole Foods, and I’m in line behind this woman talking about putting kale into smoothies, and I’m like, how am I going to do that?”
Maybe it’s my laid back nature (no, honestly) or my unwillingness to get into mommy competition and mommy guilt or even my recent bout with inflammatory autoimmune crap, but seriously, it’s not worth it. Don’t compare. Don’t feel like you have to do everything. Do what you can. Do what’s fun. If everyone is fed and clean enough to avoid an infection AND LOVED, you’ve done enough. Order takeout and read together on the couch for ten minutes. Pack sandwiches and go canoeing. Give everyone a graham cracker while you wait for the macaroni and cheese to finish boiling. Sorting out last season’s clothes is just gravy; sit down with a glass of wine and calm the fuck down.
But what I said was, “Kale is really good on its own. Olive oil, garlic, and salt. It’s wonderful.” And what she said was, “If you can start running, I can eat kale.”
Tuesday, October 04, 2011
Tuesday, September 20, 2011
First: crush my heart
Friday, September 16, 2011
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