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 thankfully...my fighting isn't in vain.
You gotta fight, for your right. To get referrals!
Down The Lupus Rabbit Hole!
3 weeks ago