Monday, June 27, 2011

Volunteering ... and karma?

Yesterday I volunteered for the local triathlon, one I did last year as an aqua-bike. Because I figured I'd be pregnant by now, and because I had a rough winter, I didn't want to race it. Turned out the be a perfect day, and I kind of wish I had, but volunteering was fun too. I was on the bike course directing people and it was super easy, but fun. Made me want to be outside more, so when I got home I took Pickle and we went to a cute town nearby, walked to the beach, played at the playground, got a chocolate milk, and sat and watched boats. She loved it, I loved it. Except for the fact that my fair skin is extra sun-sensitive right now because of the antibiotics for the Lyme, and so not only do I burn more easily but my skin feels like it's on fire when the sun is on it, it's great to be outside. We are having perfect weather.

I had basically my last PT appointment, and am back to running. Just a little, mostly on the treadmill, on an incline, and SUPER slow. But, it feels good to work up a sweat doing what I love, and with luck I'll be able to be back in slow 5k shape by the fall. Today I ran 1 mile, then .5 and .5. The incline does make it harder, but I am way out of shape, no excuses. Still, volunteering = good karma since I'm coming back (again).

Wednesday, June 22, 2011

Book Review - RA Related

Over email last week I was contacted by a publicist about a new book by someone with RA, asking if I would like to receive a copy. Sure, why not? I received it today, and...well, read it today. Take Me Home from the Oscars is by Christine Schwab. Apparently she's well known, if you're into TV and fashion. Of course, I'd never heard of her. The book was, obviously, a quick read at just over 200 pages. Not that that's a bad thing. It chronicles her story of RA, from the onset of her symptoms in 1990, through countless failed medications, deformities in her hands, being in the original clinical trials for Enbrel, and finally being basically in remission ever since.

In the beginning, I was a little put off by the fashion/TV/celebrity talk. That was/is her lifestyle and job, but it's pretty foreign to me and just not particularly interesting. She attempted to hide some pretty severe symptoms from everyone, fearing that the image of having RA would cost her contacts and jobs. I think just that whole attitude turned me off a bit to the book, not to the author so much but just that she would even WANT to work with people like that. Still, in the end, it was a good story. Her symptoms were definitely worse than mine, and reading about how she managed to go on (and how she didn't always want to) was a bit vindicating for me and all the times I've worked really hard to not let RA win (moreso in the days before this blog). One line particularly stood out to me, in the "I can relate" way: "Walking distances that I never thought twice about before now seemed painfully long." It's little things like that, things a healthy person would never think about, that make RA such a bitch of a disease.

Some of the typos and grammatical errors (apostrophes where they didn't belong, using "I" where it should have been "me") irked me, I don't understand how people in the BOOK business can't proofread (or know the English language). I could have a second career as an editor, I think...years of reading really crappy 9th grade lab reports...

Overall, I do think people with RA should read the book. There's not much else out there like this, so not much competition, and I respect that Schwab put her story out there. I hope more do.

Thursday, June 16, 2011


OK, I guess some people do still read...thanks for the comments letting me know!

Wednesday I managed to do a short (14 miles) bike ride followed by an even shorter (1 mile!) run. I sort of wanted to go longer on the bike, but I found myself actually trying to go fast, and figured I'd do the brick instead. Besides, what's the point of going long right now, when I'm not training for a damn thing...and I really wanted to run, but of course can't do that for real yet. Still, the one mile (I'm was just under 11 minutes and I'm afraid to map it to see the actual distance), though slow by choice, felt mostly normal. I find myself thinking constantly about my gait, which makes it less fun, but if I can get to the point where I can even do 2 miles and feel good, I will consider that success. I do wonder if I will ever run a marathon again, or even a half. I've been looking at the Achilles Track club, and wondering if joining it will be good for me. But then I realize that it's not the RA that's holding me back, as much as lack of time and motivation. So I just keep thinking about it rather than doing it.

I've been having about 2 doctors appointments a week lately, and this week it was the rheumatologist on Wednesday and my OB today. I honestly love both of them, and more importantly, trust them. The rheumatologist is sending me for tons of xrays of my neck, mostly to rule out atlanto-axial subluxation (I think...truthfully now I can't remember if he thinks it is or isn't that). He said to make sure I'm not pregnant when I go, as they will take a LOT of pictures. Not a problem... Then today I saw the OB. My bloodwork came back looking good in terms of LH and FSH levels. The cyst that was on my ovary last time is gone, and I have one very big follicle which he said looks like I should be ovulating soon, despite the fact that this is day 6 of my cycle. So, with that, and with showing him by BBT charts for the last 2 months which show no ovulation (probably) for one, and late ovulation with a 5 day luteal phase for this past month, he said there's no reason not to just go see a reproductive endocrinologist. Given that the rheumatologist REALLY wants to get me on methotrexate ASAP (which causes horrific birth defects) so I don't go downhill anymore, given that I'm 36 and we've been trying for 7 month (technically they consider 6 months over age 35 as infertile), and given the wacky last two cycles, I totally agree. The OB said they'd do a consult, and likely give me the options of what I wanted to do, anything from nothing to Clomid to IUI to IVF (Connecticut has really good insurance coverage for IVF if you are under 40...not that I have ANY desire to do that).

So I'll make that appointment tomorrow, hopefully for next week. Meantime, in case I am ovulating sooner than normal, we'll be...preparing for that possibility.

Friday, June 10, 2011

The last six months...

These have been, health wise, the worst six months of my life. Possibly I'm exaggerating, as the six months around the time I was diagnosed with RA were probably worse, but that was (gasp) 11 years ago, so I am probably forgetting some of that.

To recap, for myself (since I don't think anyone is reading this anymore!)...Resumed running in November, to do a 5k in December. Quit running about a week later as really bad GI symptoms took over for 2 months and I couldn't do a thing when they hit, usually around 4-6 pm and lasting a couple hours. Although I felt fine outside of those few hours each day, I was trying not to eat much since what goes in must come energy levels were low and frustration high. I resumed running in March when the symptoms went away. Two months of phlegm and bronchitis, two neck flares that required Vicodin, and then I reinjured my Achilles and had to stop running again. PT for the Achilles means it's feeling somewhat better, and I started running a tiny bit (one mile) this week. Despite the GI symptoms which came back 3 weeks ago (maybe a little less severely).

And then, today, this:

Hard to see, but it's a classic bulls eye rash right where I picked the tick off a week ago...classic Lyme disease sign. Everything I researched online after the bite said not to worry if the tick hadn't been attached for less than 24 to 36 hours. And that sucker was on my side less than 6 hours. Well, turns out you shouldn't believe everything you read online. Even from I can't say that I have any symptoms, and it will be treated early compared to a lot of people who get Lyme, but still...really?

And then add the fact that we've been trying to get pregnant again, with no luck, and my last 2 cycles have been anovulatory and all messed up.

I am REALLY hoping I can catch a break and that once school is out (two week from yesterday), I will be feeling better (adding two new prescriptions to my existing cocktail) and able to feel normal again. And eat normally. I've been patient, I think, for me. I'm not pushing myself to do more than I can do right now. Rather than doing the local triathlon (or aqua bike), I signed up to volunteer. Rather than running the local summer series, I am volunteering. I feel good about it, because I don't want to go out and feel awful and defeated just to say I "raced." I'd rather feel good helping others have a good race and hopefully just get better.

It sucks.