Ups and Downs

Not much to report on. Swimming has been ok. We did a 500 yard "time trial" (can I call it that in swimming?) and, not unexpectedly, I was the slowest one in the Wednesday group. 11:34. It's really hard to push for me when swimming, that whole breathing thing mentally freaks me out. If I am breathing too hard, but only get to breathe when there's a chance I might get a mouthful of water instead of air, I am reluctant to go so fast that I can't survive if I miss a breath. Eh...I guess all that matters is if I improve that time, and we'll be retested in a month and then at the end of the program. You swimmers, can you give me any indication of what 11:34 MEANS for a 500? Like, for me, if I went all out I could, at least when I could run at all, have probably run a 6:40 mile or so. A more comfortable mile pace might have been closer to 8:00 if there was a reason to run fast, or a sustainable pace more around 9:00. Clearly 11:34 is not fast...but does it put me in the ranks of the 12:00 milers, the 10:00 milers, the 15:00 walkers?? It's weird having no reference point.

Get orthotics Wednesday. Don't want to say anything else, don't want to think about it. Either they'll work, or they won't.

In order to help in the not thinking about it, I've made a big decision. Although we won't officially commit til next week, Fred and I are going to sign up for the California Coast Classic, a 585 mile bike ride from San Francisco to Los Angeles that raises money for the Arthritis Foundation. RA has, temporarily I hope, taken away my ability to run. On the other hand, it sparked my running in the first place. But, still, it's taken it away. And I am pissed. But rather than dwell on that, I will ride. And swim (which, incidentally, hurts my ankle), but this summer I will ride. A LOT. I will be a cyclist.

And I will prove something to myself, again.

On a happier note, Andra is the BEST. I went out to lunch with two friends today, and she was incredibly cute and well-behaved (minus a few things dropped on the floor). My kid's got a great sense of humor and, except when she is teething, is so much FUN to be around. And later on today I went to this clothing swap a big group of working moms from the YWCA had, and even though I only brought a few things to swap, I left with TONS of clothes for the next 2 years plus a couple toys. Since I went right at the end, and everything left over was to be donated to charity, I didn't feel bad scooping up everything I did. Good clothes, great price.

Lots of random thoughts

Went up from 1600yds last week to 2150 last night. Big jump for me. Actually, 1600 wasn't too tough with the breaks I take, and I went to the pool twice on my own last week too. 2150 on my own will be hard, but I plan to go tomorrow afternoon and then again Monday or Sunday.

I got fitted for orthotics and they should be in in 2 weeks. The podiatrist said he fits about 5 people a day, 1-2 of whom have RA, but only 1-2 a YEAR are for the talo-navicular joint. He said it should help. I hope so because it ain't pretty right now. No running, walking with a limp most of the time. Lifted today and spin once a week now plus swimming so it's fine but I will be happy if I can get back to running, even if all I ever do again is a 5k I will take it. I know I will...I've been through this with the wrists EXACTLY. They were bad at first, and now for the last 2 years maybe they are FINE even with the structural damage. So it might be a little while, but eventually the ankle won't hurt anymore. And probably I'll go through this with the other ankle at some point. Weird that it's not now as RA is usually bilateral. But, not complaining.

Andra decided this week to start feeding herself. With her fingers AND with a fork. Ok, there's usually no food on the fork, but she gets it to her mouth just fine! Plus, she bit a kid at day care. We think the other kid stuck his finger in her mouth, so it wasn't exactly intentional, and apparently after he screamed, she screamed louder and longer. So, I think she was sorry and won't do it again!

My friend from school who's adopting a little girl from Haiti is on pins and needles. She got a picture of Aliette (10 months) exactly one week before the quake, expecting the process to take 1-2 years. Now, she could arrive on a cargo plane at any time. Last she heard the kids from her orphanage were waiting at the US embassy at 4am this morning to leave. They could fly in any time, to anywhere in the US. She is waiting for a phone call telling her something like, "Be in Kansas City at 5pm." I gave her my old car seat and our school resource officer (aka cop) pulled some strings to get it installed correctly today. I brought her some bottles and some warm clothes, pjs, a couple little toys...seriously, she did not exepct to become an instant mom to a baby! She is psyched but overwhelmed, and of course she has no idea what shape Aliette is in. Dehydrated, dirty, sick, etc. And not knowing and imagining what she's going through has to be awful. I just hope she gets out today and my friend can just get her in her arms. This is her second adoption (first from China) and wow, I'm glad I could get my kid the old fashioned way...the stress and emotional toll of adoption is not for the weak-hearted!

I must be hardcore too!

Tonight was the first masters swim. It was fun! And I convinced myself that I belonged in the Wednesday group! Not because I'm fast...hardly. Not because I have endurance (I chose the shorter of the two workouts we could choose from)...hardly. But because last night around 3am I woke up nauseous, ended up having a few puking episodes the next couple hours, called in sick to work, slept in until 10, napped from 12-2...and still went to swimming!

I actually felt pretty fine by then. Tired, but honestly I will feel that way every night. Once I was done puking I tried really hard to get enough calories in me so I could make it. If there is a silver lining to puking (and other things), it's that my weight drops by a couple pounds overnight (I finally hit 145 this morning...yeah, I know it's not real) and I feel obliged to eat as much as I can once I'm better. Not that I wanted to eat anything today...but it's still different to say to myself, You must eat! instead of, Stop eating!

So apparently my swimming stroke is ALL WRONG. Near as I can tell, my stroke is like a windmill. Frankly, I LIKE my stroke. The whole point of my doing this masters program is to STOP feeling like I'm going to drown. Yet, what the coach had us doing made me feel...well, like I was going to drown. He assured me I wouldn't, and, ok, I didn't, but...seriously? I guess we still have to work on my kick and my breathing, and apparently once all the pieces are there I will be a better swimmer who won't freak out in open water swims. But this is going to take work.

Progress

Loved the new ankle guy. Didn't hurt that he was cute and said, "Have we met before? You seem familiar," and totally GOT that I am a runner. He looked at the xrays I brought from September, and said the report was wrong. The report said the left ankle was normal, no damage. He said, not so. The ankle joint actually is ok, but the talonavicular joint has joint space narrowing (sign of RA) and a small erosion.

OK, hands up, who knew you even had a talonavicular joint?? But so cool, click here to see ALL your ankle joints in motion!

He was irritated that it had initally been read wrong, and said he might write the radiologist a note...I said, "Please, do it!" That's not the kind of thing I want misdiagnosed. And, yet, the first ankle guy I saw didn't mention it either. Hmm. But I trust this guy more. And he explained all kinds of things to me and answered all my questions, so I didn't even really mind that my 3:15 appointment didn't start unil 4:00. He did mention at the end that it was possible this was NOT an RA issue, but it is. I tried to explain that I couldn't explain, but I just knew. Then in my research tonight I found this that says it's actually a common joint affected by RA. I feel like my knowledge of my foot expanded about 100% today.

The talonavicular joint is what moves the ankle side to side. My up and down range of motion is pretty ok, but side to side I have little, it's very very stiff. Not a big deal for running and cycling, luckily! He didn't bat an eye when I said I've run a few marathons and am very active, whereas most doctors will sort of imply that I should give it up if it hurts. He didn't. He had a plan to try to accommodate me.

Anyway, here's what he said. He said if I really want the cortisone injection, he will do it...once. It's a tricky place to do it, and there are tendons and things in the way, but he respected my wish to try it and see. But he suggested first that I see the podiatrist in their group for orthotics that can actually take the pressure off and stabilize that joint. So I'm going back next Wednesday for that, and we'll see. Nice to know I can have the shot as back up. And as an extreme back up, that joint can be fused, meaning I would lose all side to side range of motion but shouldn't ultimately affect running. Not that I see doing that in the next 10 years, but I feel much better having all my options laid out and being told that it's my decision.

Cold run

After bailing out on the 9am run since only Sarita was going to join me (and she was easily pacified by the text, "Breakfast instead?"), and finding out that Jen's friend Nicole actually showed up expecting us to be there (I didn't know!), I did actually go running outside. I did about 2 miles on my own before meeting Sarita to run/walk another 2. It felt great. Better than the treadmill as I had no sense of my pace and it was nice to be out in the bitter cold. (The weather guy saying there was a wind chill of -7 in a nearby town was what turned me off this morning.) Seriously. My ankle was fine at first, definitely stiffens up after a mile or 2. Hope the doctor tomorrow will just give me the freaking cortisone shot. Even if not I'm hopeful I can get consistent with 2-3 miles a couple times a week. If the ankle hurts while running I won't do more than that. But I think I can do that.

2-3 miles used to not even be worth it.

He put me in the Wednesday group...

...with the fast people. I guess I was right on the border.

This is good...this is good....this is good....

I loved Jessica's comment on the last post: " For me, it kept getting even more fun every session because for a good loooooong time I had nothing to do but improve."

This apparently will be my new attitude.

Swimming and One More Try...

First Master's Swim was tonight. Super nervous but then it was of course fun. Tonight was just short, we swam a 100 (1:48) and a 200 (4:11) (thanks Michelle for clarifying!!) so the coach could see which group we belonged in (Tuesday nights are beginners like me, Weds are the hard cores).

And I made an appointment with a new ankle guy to get the cortisone shot. I need to push this and get one before I resign myself to not running for a while. So Monday afternoon...we'll see. I didn't push with the other guy because it wasn't this bad. And I don't want to go back to that guy because he doesn't take my insurance and I don't want to pay $125 to be told no again. So this will cost $20 and hopefully he'll just do it. There's no downside to trying, worst is it won't work.

Worst RA flare ever

So New Year's Eve sucked big time. My neck has been "affected" by the RA for a few months now (and years ago too, though it went away then). Maybe around 5 or 6 New Year's Eve I noticed it was feeling stiffer. I had up til then had a great day, and I even ran an easy 3.1 miles on the treadmill (bringing my weekly total to 5.1, the biggest I've had all month). By the time I put Andra to bed, it was obvious I was having a flare. I don't remember exactly, but I started popping my prednisone pills around that time hoping to head it off. Nope. By 8:30 or 9 I was pretty much in agony. The 30mg of prednisone (that's 6 of my 5mg pills...lately I've been taking 5mg a day, so that's a big increase) plus the naprosyn and Tylenol didn't seem to do anything. I don't think I can do justice to how this felt. I've had pinched nerves, I've been to the chiropractor for "regular" neck pain. I can't describe it, but I will try.

First, I had zero range of motion in my neck. Not side to side, not up and down, NOTHING. There was absolutely no position that offered any remote comfort - not sitting up, lying down, resting my head on something, NOTHING. When I finally went to bed (9:30, for the record) I didn't fall asleep for hours. I honestly don't even know how I managed to out on my pajamas or brush my teeth other than sheer will. The worst part was actually lying down. Turns out, anything you do when you move involves your neck. Not something we would ordinarily think about. Until everytime you try to move, you want to scream in pain. The act of lying down...I could sit on the bed, but the lying down part took a few tries. Seriously. I would start to lie down, and it hurt too much. To lie down, you have to control your head. You have to contract your neck muscles to support the weight of you head. I couldn't do it. Eventually I think I put my hands on my head and one hand grabbed a chunk of hair and the other was behind my neck, and I did it. But then, it's not like I was comfortable, or done. And to turn over, to adjust the pillow, ANYTHING, was agony. At one point I told my husband that if I didn't feel better in an hour we were going to the ER because I needed narcotic pain relief. Remember that I gave birth with no epidural, no pain meds. I won't say this was quite that bad, but it was close, and it lasted longer. I did have to get up to pee and get more meds once (it was 11:59 believe it or not. I didn't care.). But that meant I had to figure out the whole lying down thing again. My husband brought up some Vicodin that he's had from a while back and I took one. Around 4:30 am I woke up and felt better, though still today it's not quite back to normal.

I've had other flares, but not for a long time. A couple years. And then, it was "just" my wrists, or ankles, or random fingers. I could splint my wrists so that they wouldn't move. The ankle, well, that was trickier. Your neck...it affects everything. So whether this was a worse flare or just a worse location I can't say. But I hopr it never ever happens again.

So, New Year's Eve pretty much blew for me. I have enough prednisone to get through til Monday, and will see what my doctor says.

You know, I was doing really well getting back into working out this week, too. Spinning twice, running and lifting, running again. Not like I was overdoing anything. There's no reason for this flare, other than it's been building. Don't know what it means. Is Enbrel stopping working for me? In general I wouldn't mind if I went on another biologic, but Enbrel was fine during pregnancy and I don't know what I'd do when we're ready for another kid. Maybe I just need to be back on a higher maintenance does of prednisone, but that isn't exactly what I want either.

For as much as I named this blog "Muscles and RA," the RA has taken a big backseat til lately. For the next while I'm afraid it's going to make itself known.