Friday, June 1, 2012

What Does RA Look Like On the Outside?

Rita really has got a tight grip on my joints now. This wild woman is out of freaking control. So much so my doctor suggested I go to the Mayo Clinic. Ummm, that doesn't sound good. I saw my doctor yesterday. I trust this one, I will venture to say I like her as a human being. Those are rather high marks coming from a skeptical patient like me. I live near Duke, why she shot over Duke and went for the Mayo Clinic was a little puzzling. I told her that instead of racking up big bucks on the Mayo Clinic, I'd go to Duke Rheumatology. She said she would refer me. Guess when I can get in to see the big brains at really, take a guess. It's truly laughable. They can see me in November at one office or January at the other. The scheduler for my doctor called me and was amazed. I was amazed some but figured out why the length in wait. Old patients 75 year plus who hurt and are stiff are recommending themselves right and left into Rheumatologist offices and they flood the system and make it very difficult for younger patients to get in. It's a fact, I'm not being cold. My rheumatologist and my other doctor admitted to it. So, my doctor suggested I call everyday hoping for a cancellation. It sounds great in theory but come on folks, calling them daily turns into a full time job in itself. 

Maybe I do have a better chance of getting into the Mayo Clinic earlier? I was sitting here laughing thinking I should just go to the Duke Hospital Emergency room and not leave until I see a rheumatologist. Do you think that would work? I once saw on Mystery Diagnosis that a girl was so fed up she drove herself straight to the emergency room at Harvard and wouldn't leave until they found out what was wrong with her. It turns out she had some major major life threatening problems.

I was sent for yet another hip X-Ray. My doctor will not let up about avascular necrosis. I am unable to get the MRI because of the screws in my leg. Ugh. So now what? 

Rita pulled a pretty spiffy trick on my ankle today. She made my ankle into a double hump camel. RA is like shadow puppets. My joints turn into all of these weird looking creatures. It was impressive today. I used a new app I have and made a photo montage of what my RA has looked like lately. Rita is alive and kicking that's for sure. Hopefully I do not go back to the darker place I was a few days ago. I got my antidepressants increased. Hopefully tomorrow that will start to help with the pain management as well because as of today, I only have 13 days left until my first of 2 surgeries. I just want to rest and relax with minimal pain and worry before going in.

Here is my ode to visible RA. I think this meets the specification of looking sick.

I sure do wish for better looking knees and ankles but that might not happen. 


  1. I like your idea of going to urgent care or emergency and be adamant about how no, you are not looking for a new med or more meds for pain. Please let us know here how it goes. It just seems not okay to me that you should have to wait that long; there's got to be a way they can squeeze you in. All best wishes for getting answers and support.
    ~ Janine

  2. Ouch, your knees do look sore. I feel for you with the ankles, I have a good set of those too at the moment although not quite as spectacular. I sometimes feel like only the obviously visible swelling in my ankles justifies me being off work for some people, although in reality its the pain in my hands and wrists that causes me the most problems! People just seem more comfortable with the whole concept if they can see some evidence! Really hope the pain does ease for you over the next few weeks before your op and that you get a sooner appointment, waiting till November is ridiculous x

  3. Janine,Hi stranger! I doubt I will go to those lengths of going to the emergency room at Duke ahaha. I just liked the balls that one girl had for admitting herself into the emergency room at Harvard. Many doctors think a lot of us crazy but they get us to the fly off the handle lunatic stage. Thank you (always) for your support and well wishes.

    Viki, I hope you are feeling a bit better (as much as we can with RA). Ankles are rough, that's for sure. We need them for so much. We need all of our joints for so much. I hate showing my swollen and disabled self to the world on a daily basis but I decided I had to bite the bullet and show proof for us afflicted with RA. I want proof to smack the naysayers in the face in all honesty. Then perhaps they will shut up and stop jibber jabbing about their regular arthritis. I'm out to help us all! I agree, November is ridiculous. I may just have to be one of those crazy patients this week and call and call and call....then call some more. I'm pretty relentless (so I have been told) =) Take care! xoxoxo