Looking back through my past posts, I realize that I didn’t finish my story about the rheumy’s office. I got so caught up in the problems with getting a diagnosis that I forgot to tell you the reason that I started the story to begin with.
Normally I’m the first one to say that nurses are invaluable to a doctor’s office. They are truly the ones who CARE for the patient (not that doctors don’t care, they’re just so busy to focus that intently on an individual). So what I’m about to say is something completely unlike myself. The nurses at my rheumy’s office are rude,obnoxious, and down right nasty.
During my three month checkup – I came to the office a bit early to check in because I knew that I had insurance changes. I was grilled by the two main office receptionists (nurses also) about why I changed and (since it was supplemental insurance to another policy) why I would get additional insurance. What is it any of their business – and why do I need to remind them that seeing a specialist is expensive? They also sit around and discuss patient information and other important material so loud that I’m pretty sure I could tell you information of half the patients there. The patients waiting to be seen sit quietly and patiently for their turn, while the office staff run around making a fuss.
The nurses who usher me to see the doctor or lab are no better. No humor or “bedside manner” so you might say. Honestly the only reason I’ve stayed at the office is because of my new rheumy. She is kind and listens to me when I ask questions. And she is the one that finally confirmed the diagnosis of lupus – she reviewed my labs with me and discussed my options and what happens next. If it weren’t for her, I would have abandoned ship long ago.
What’s your rheumy like? How were you initially directed to them – friends, doctor’s referral and are you happy with their service? Because no matter what, they still work for us – if you don’t like their bedside manner or their methods, a second opinion is always possible.
So yesterday was my check up that I have every three months. Like I said in the last post, there are no rheumatologists in my town so I have to travel about an hour and a half to the nearest rheumy.
My problem is – I don’t know if I need to find another doctor (or in this case office). Don’t get me wrong. My current rheumy is great. But I’ve had issues in the past and this visit just reinforced my doubts.
When I first began to get ill. I was recommended by my then Primary Care doctor that since she didn’t know why my ANA counts were high that I needed to see a rheumatologist to rule out Rheumatoid Arthritis. And as 25 year old, the prospect of being told I had RA scared the bejeusus out of me. I didn’t go back to that doctor and I refused to make an appointment with a rheumy. Eventually the pain got so bad that I had to quit my job and move back in with my parents – it was then I had a wake up call and made an appointment.
My first rheumy was recommended by a friend and was nice, if a little aloof. On my second visit she sent me to the ER and had me admitted for a blood clot in my leg. I was impressed that she found it. I was subsequently diagnosed with APS. But there were certain things that didn’t fit, my anti-DNA markers were high (along with other blood tests that weren’t common with APS), I had severe joint pain, and high protein in my urine. After doing my own research I began to suspect that Lupus could be my primary diagnosis with secondary APS. But my rheumy kept telling me no. It wasn’t that.
Cut ahead 8 months or so and that doctor retired. I was passed off to another rheumy in the same office and after my first visit with her she declared that I DID have Lupus and she had no idea why the other (original) rheumy would say that I didn’t.
(I know that the diagnosis of Lupus is kind of subjective since there is no individual test that could tell the doctor yes or no but if it was that obvious to another doctor and to me – why would my first rheumy be so adamant about my diagnosis NOT being Lupus. Is there a stigma attached to diagnosing someone with Lupus? Is it the unpopular thing to do? Or is it just some weird backlash to the new Lupus awareness…if you think it could be Lupus then it probably isn’t?)
Oh boy. It’s just after 9 o’clock and I’m already in bed. Woohoo! I lead an exciting life 🙂
Actually today has been pretty busy – too busy, if you ask me and my body. Not only was it my regular 3 month check-up with my rheumy but it was also my first day in my new position (I got promoted!!). But to fit it all in I had to get up at 6 in the morning, travel and hour and a half (there are no rheumys in my town) and then be back by 2 to start my job, and work until 8. I’m exhausted!
Fortunately, my mother wants to come along to all of my appointments. I think since I was admitted to the ER during one of my regular visits last year she refuses to let me go up to my appointments alone. And I don’t mind having company, it’s a long drive and if something does happen it’s good to have support right there.
My appointment was just the norm – blood draws, urine samples (because I have potential kidney involvement) and the routine – “How ya feeling?”
But more on the doctor visit tomorrow. I’m exhausted and once again I have a pretty nasty headache – time to go to bed before it hits migraine status. Does anyone else deal with headaches/ migraines and mental fogginess?
So be amazed. I’ve wanted to start a blog for a long time – and I’ve actually started many of them… I just unfortunately forgot to write or do anything with them. So ladies and gents – it amazes me that I have the ability to remember to do this one… For now.
So the exercising/ trying to be healthier continues and yes, my legs and abs are STILL sore. I’m weak – there’s no denying that. But in spite of the pain I’ve managed to go swimming last night and get a little strength training into today. Yeah I’ll say it – woohoo for me!
But unfortunately my headaches are back and in my experience that usually means my INR has gone back down. So I get checked Friday… Does introducing a new workout and diet (just watching calories) change the way the coumadin is metabolized? I’ll try to look that up and find the answer.
Also, back to visit my rheumy this next week for my regular visit – more vampires, oh goodie.