Thursday, August 11, 2011

Rheumy, 2.0

Well, last Thursday I finally made it to the Lupus Clinic at Duke University Hospital in North Carolina. If you are just joining me on this journey, allow me to fill you in:

Since January of this year, I've had to fight for the referrals I received; my primary doctor and local rheumy weren't to thrilled about my request to see others. (I'm sorry, are you my boyfriend?! Share and share alike!) I will say again the doctors were very nice, but I felt their resources were limited. I can't afford to live with limits.

I was told the Lupus Clinic was hard to get into but I was willing to wait because I heard so many good things about the Rheumatologist department/staff and the overall quality of service. I've been trying to get an appointment for about 3 or 4 months, so I was thrilled when I got that phone call. Thanks to some help from my loving cousin (who happens to be a lupus warrior,) I made my way to NC!
Taking what I have learned so far, I really did my best to be "the model patient" - I took all of my meds (as an example of the lab rat phase,) along with my health journal including my local doctors names and numbers. I tried to have my complete medical history with me also, but my paperwork was held hostage at the eleventh hour...another story for another day. *Breathe. Just breathe*

This was obviously my first trip to Duke for myself; around here, you only visit Duke when the situation is 'serious'. I'd tell people I was going and I can still see the look of fear and concern on their faces...instead of going through 'Autoimmune Disease: 101', again, I told the masses I was having some test done relating to my RA.
Unlike my other appointments, I asked my best friend to come with me - this allowed me to take my mind off of the visit and avoided me the embarrassment of getting lost by myself (it's easier when you have a "fall guy", lol!)

Discussing my symptoms and issues with the rheumy, I again realize how rough it has been for me over the last year; at one point, I just stopped and asked the doctor, 'Does all of this make sense?!' Instead of being sad about it, I just had to quietly say "Thank You, Lord" for keeping me sane and centered all this time.

The visit to Duke was also unique to me because I had two doctors perform a psychical- checking pressure points and asking me obvious questions: 'Does this hurt?' (Yes, it does...) It was nice to be talked to and treated like a real person instead of an odd case.
After I left a few samples, I was ready to roll. I go back in October to discuss my lab results even though the doctor and I have a good idea what's going on...beyond the Lyme Disease, RA, and Fibro (sorry Dr. House, sometimes it is Lupus.)

As we left the hospital, my bestie asked me was I glad I went to Duke. I told her, yes: spending so much time in doctors offices and being thoroughly observed isn't what I though I'd be doing in the "prime of my life", but this is my life now, and I have to preserve it as long as I can.

So all-in-all, last weeks trip was positive. I had to fight like heck to get to this point, but fighting isn't in vain.

You gotta fight, for your right. To get referrals!


  1. I'm fighting too... Cleveland Clinic has been approved by insurance. Just waiting for the appointment! (relapsing polychondritis, Minere's disease, fibro). Good luck to you!

  2. Will be looking forward to read how your followup visit goes with them and what Duke recommends. Wishing you the answers you seek.

  3. Thanks, Bekah and good luck to you! Thanks, Deb - I will keep you guys posted!

  4. Wishing you the best. My prayers are with you.