View Full Version : Lots of good news!

03-22-2011, 11:51 AM
Wow, it's been quite the two days for me, and in a good way! I went to my original rheumy yesterday, the one that goes back and forth on me regarding my Lupus, just to check in and see if I could get on something besides just the prednisone. We had a very intense, respectful conversation. I told her all about my last hospitalization and that my pcp is sure it is Lupus but defers to the rheum in these matters. She referred to my numbers again and I asked point blank if that is the ONLY way to determine if I have Lupus. She agreed that it wasn't and that I clearly have some AI issues. I also found out that regarding my pulminary problems (shortness of breath, chest pain) that there was damage found. I wasn't snappish but I did express that it would've been nice if someone would've explained that before instead of throwing the words Shrinking Lung disease at me and then saying nothing more. Apparently there's vascular issues too that I was unaware of. She told me to insist on biopsies the next time clusters of bruises show up on my legs (I just looked at my legs -- I should probably go in right now!). She put me on a new medication, it starts with "C" and is for transplant patients. I'll just be glad to try something besides prednisone. But, in my defense, on my last visit she was all about "get off the prednisone right now!" and this time she was telling me that I need to take it really slow and that the high dose I'm on now is warranted. No wonder we get dizzy! Everything is always changing! She adjusted my pain meds since my pain seems to go nowhere but up. The Fentyl has really helped and it's nice not to have to carry pills around all the time. But I came out of the appointment feeling like she listened to me and addressed my needs. The only drawback is that I know she'll forget 90% of what we talked about and that our next visit could easily fall back to..."why do you think you have Lupus?" I think she just has too many patients.

But the great news is that I was accepted into Washington University's Medical Center rheumatology group and have an appointment in May!! This is just huge! Not only did I get an appointment, I've been placed on expedited so when there are cancellations, I may get in faster! They are supposedly the brain trust of St. Louis so I am putting a lot of faith into their ability to help. I can't imagine getting this condition stabilized (or even sort of stabilized)! I just feel incredibly blessed because I can tell that my current condition is deteriorating. My cough is coming back, my skin is rashing up and I'm pretty much going to have to count on my cane as I'm dizzy most of the time now.

I just had to share this with all my fellow Lupusites. Sometimes we really do get lucky!! Tgal, I think this is your good karma overflowing to me after your last Dr. appt where you got some real validation!

Take care and I will keep all of you in my prayers that wonderful things come your way too!

03-22-2011, 12:21 PM
I am sooo happy for you! since you mentioned the shortness of breath here I think you need to see a cardio even more than in that last post. I also learned through all of this that the shortness of breath or having a difficult time getting a good breath can also be a sign of heart problems! Not saying yours is but you asked in another post and I now say YES!

So glad things are turning around fo you!

03-22-2011, 12:59 PM
This is how ALL doctor's appointments should be if they do their job right. Isn't it terrible that we not only have to deal with this terrible disease but also doctors that go back and forth with listening. I'm so glad she listened this time and let's hope and pray it continues. Congrats on getting into WUMC!! YEAH!!!!

03-22-2011, 03:46 PM
i am glad you have got in hope everything goes alright and you get the answers you need

03-22-2011, 06:40 PM
it feels GREAT to be taken seriously.

follow through on the other tests.

glad to see you now heading in 1 direction, less stress.

03-23-2011, 06:48 AM
What great news! I am so happy to hear not only about the good doc appt but also about the new rheumy program. Wonderful! Congratulations!

Who ever would have thought one day we would be congratulating our friends on being sick enough to warrant serious medical intervention? SMH