Tuesday, May 25, 2010

Just Waiting

Waiting for the results from my ankle MRI yesterday. (UPDATE: Initial report looks like just RA, not osteonecrosis, which is a good thing...sort of. It still sucks.)
Waiting to make an appointment with the guy from HSS. (August 17...wow, that's a long wait.)
Waiting to find out what the f*ck is wrong and whether surgery can fix it so I can walk normally again. And run...? Ever?
Waiting to make an appointment with my superintendent to see if he will let me do the CCC bike ride (don't want to do this until I know if I have to have surgery, which would likely mean the ride would be out anyway so why bother. But since my HSS appointment is now not til August, I guess I won't have to worry about surgery before the ride.).
Waiting for the school year to end. I finally reached the end of my rope with it all, maybe a little later than usual but basically right on schedule.

May sucks.

Thursday, May 13, 2010


Bought her this toy stroller at a tag sale. Super cute to watch her push it around for the first day. Then she decided she wanted to RIDE, not push. The toy is now hidden.

My kid loves to put a hat or bag over her head and walk around blind. She did this when she was crawling too. Can't get enough of it. Weirdo.

These two just cuz they're cute.

We spent the morning at the beach today (a nearby beach for rich people who can afford to live in that zip code...we've been scoping those beaches out because after Memorial Day, we can't get it). Andra loved sitting in the rocks and shells. She tried throwing rocks in the water, but most ended up just dropped at her feet. Of course, I didn't have my camera or my phone. But it sure was a pretty day!


My latest search term in Google.

Saw my rheumatologist today. He wants me to get a bone scan and/or an MRI to find out if my ankle issue is osteonecrosis, not just regular RA damage. Basically, the blood supply may be being cut off to my talus bone as a result of the RA damage, effectively killing the bone. Reading the symptoms (though it's not too common in this bone, more common in the hip), it could be. Because, except for the neck, I have had no other joints flare, and RA is usually much more whole-body. The scan/MRI, if read by someone who knows my history and can compare to my history of x-rays, should offer a definitive answer. He wouldn't really speculate, which was annoying but at the same time appreciated. Assuming my insurance will cover it, I will go to the Hospital for Special Surgery in NYC for these tests. It's nice to live so close to some of the best medical facilities in the world.

I asked for more pain medication, he prescribed Voltaren (which apparently has caused a huge decline in the vulture populations of India...love Wikipedia). This will be the first time in 11 years with this disease I have ever used prescription pain relief. He offered me a narcotic pain reliever...he says if I'm complaining of any pain, it must be bad because he still insists that I have a super high pain tolerance. Hopefully Voltaren will help. It doesn't hurt when I limp (the new walk), but I'd really like to STOP limping because EVERY SINGLE DAY at school at least one teacher I haven't seen in a while asks why I'm limping. "Eh, just an ankle issue," is my standard response. Annoying, though of course they mean well.

Been slacking off in the workout department, partly for lack of time (meetings, doctor appointments, husband now also working out and therefore cutting into my time somewhat, though it's good that he is stepping it up) but more lack of planning. Soon...only 4 more weeks of serious school. Although I do have 2 aqua-bikes (though I still call them triathlons) I'm doing in June, so I probably shouldn't slack off too much.

Still working on the appeal. Blah. I guess I'm in no hurry to get the whole thing denied once and for all. I have two chances...the superintendent, and then if that doesn't work I can possibly file a grievance through the union to try to force the district to let me take the days without pay. Don't really know what any of that means yet.

Friday, May 07, 2010

Making a silver lining...

Next week I will talk to the union rep to see what my options are to appeal. Then I will appeal, and then wait. I figure I have a 5% chance of getting all 5 days off, and a 10% chance of getting 3-4 days. That's a 90% chance of being screwed. So I am preparing to make my silver lining. It will not be nearly as awesome as going to California to ride with 300 other people to raise awareness for the disease that is eating away at my joints...in fact, it could quite suck...but, it will be the best I can do and it will be better than doing nothing.

I am going to ride the distances myself, after school, as if I WERE in California. The longest weekday distance is 65 miles. My parents can still come out to watch Andra (and to be back-up support for the rides). I am sure I can drum up people to ride with me. I can get publicity for all this (positive publicity...hopefully the urge to say terrible things about the actually really good district I work in will pass...). Maybe I can get the Connecticut chapter of the Arthritis Foundation to organize their own Connecticut Coast Classic (in the summer, of course). I might be a crappy teacher for a week as I'll be awfully tired, but honestly, I wouldn't really care.

So that's Plan B. I hope I don't need it, but I am prepared to go gung-ho after it if I need to.

Workouts fell short this week, though Tuesday I did the core class and 45 minutes of upper body lifting after, and Wednesday I swam 1800. Weather has been perfect for running or walking. Yeah. We've been going to playground, and to a school track meet. Gotta say, I loved cheering for the slower girls, it's more inspiring even than cheering for the girl who can run a 5:07 mile (and trains with the boys' team...because she can run a 5:07 mile).

No bike ride for me Sunday as I am volunteering at the Mother's Day 10k I have run the past 4 years. Gotta keep the streak up somehow.

Sunday, May 02, 2010


My request for time off for the ride in September was denied. I really hadn't thought this was a possibility until 3 weeks ago when I asked the union rep for advice. I mean, we get 3 "personal" days a year (although I knew I probably wouldn't be allowed to use them...I had to take an unpaid day to run my last marathon in 2008...to call them personal days is quite a misnomer). I expected I would have to take the days unpaid, but I didn't really get that they could completely deny them. The principal said he would support it before I requested the time. So when my favorite HR guy stopped into my room after school Friday, I knew it was bad news. I was, I think, very professional in my pissed-offedness, I thanked him and just let him know that I would have to speak with the union to see if I had any other options. He proceeded to tell me that he has arthritis in his back, so he knew how I felt.

Yeah. Anyone reading with RA, you don't need me to tell you how that made me feel. Those of you who don't have it, understand that osteoarthritis (what we all usually think of when we hear "arthritis") and rheumatoid arthritis are nothing alike. I don't even want to bother to try to explain, so I won't. But at this point I couldn't get the guy out of my classroom fast enough.

Bottom line is, I have no idea if I will be able to convince anyone (my only hope is the superintendent, and possibly the Board of Ed) that I deserve this. Apparently, through our contract, the HR guy probably does have the right to deny it. So I can ask for special consideration (which they will grant in some situations, but usually it's for deaths or serious illnesses...and...I don't know that I can convey how important this is knowing that they probably just won't care), but I don't know what my chances are.

Two days later I am less emotional about it, but still pissed. I may be able to get them to give me one or 2 days, and maybe ride for 3 or 4 of the 8 days. I may be able to do the ride another year (without having to do all the fundraising again), though for many reasons I feel like if it's not this year, it just won't happen. Fred will definitely still be going, so at least I don't have to tell everyone who donated that the whole thing is off...just my part.