Thursday, May 13, 2010


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 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.


ValleyWriter said...

Yikes! At first the name osteonecrosis sounds pretty scary!! But I just looked it up and saw that surgery is a treatment option. That seems like it would be a good thing - hopefully eliminate the pain & get rid of the limp. Good luck!

Angela and David Kidd said...

I hope you get some answers to your pain so you can start to work to resolve them. I admire how well you deal with the issues you are handed. I'd be a whining baby about all of it.

rheumablog said...

I'm with ValleyWriter -- Yikes!
That said, I'm glad that your rheumatologist has his thinking cap on and is being aggressive in working to discover the reason for your pain and limp. I'm amazed that Voltaren is the first pain-relief med you've taken in 11 years of dealing with your RA -- you really ARE tough, sweet Clare. I hope it works to bring you some relief.
And I hope that the tests will reveal an answer. If it IS osteonecrosis that has your ankle in such trouble, it's good to know that there are options for fixing it, once and for all.
You've got too much energy, will and potential to end up on the sidelines of the activities you love, and having pain every day surely does take a lot of the sparkle out of life. I'm so glad that your doc -- and you -- are working so hard to overcome it.
Wishing you the best, as always,

DC Running Mama said...

Sorry I haven't posted in a while. I can't believe they denied your request to do the bike ride!! I hope the appeal works in your favor.

Re: the ankle. What will they do if it is osteonecrosis???

X-Country2 said...

Hopefully you get some answers soon. Take care of yourself.

Cassandra said...

I hope you don't have osteonecrosis, but I suffer from the disease and have started a blog for the community because there is so little information out there on doctors, causes, therapy etc.
If you are interested my blog is:
Good luck and I hope you continue to live a full life.