My trip to the rheumatologist

That is never a boring trip for us to make :S Even though this appointment was only for medication refills and to discuss what was going on at the knee clinic.  So mom and I figured it would be a pretty routine and uneventful appointment and were going to go do some shopping afterwards.  That, of course, isn't what happened.

I first have to remind everyone that I absolutly love my rheumatologist!  Dr. W has done so much for me in the years since I started seeing him (I think I first went in 2006).  Without him I would still be in a lot of pain and fighting with my GP about pain medications.  I wouldn't know about the osteopenia, wouldn't have got my shoulder issues under control with medications that aren't used for that purpose and just would have had to do a lot more fighting to get tests and things under control.  With Dr.W all I have to do is suggest that I think something is wrong and he goes through everything to try and see what it is that is having the issues.  That is what happend at this appointment.

We go in and talk about about things in general, he asks how things are going and on and on just the normal stuff.  He asks about my shoulders (doing really well with the medication he suggested), the wrists (left one is hurting now but it is also flared up from the crutch) the knee (told him what is happening at the clinic) and then he asks if I have any questions.  So I told him that I thought it was strange that I have been waking up with very swollen hands that last between 30 minutes and an hour before I can really move them.  Well that woke something up in his mind and he had me come over for him to do a full physical exam of my joints.  I hate having doctors play around with my joints but have no qualms about Dr. W doing them.  He is so gentle that I don't hurt afterwards which is very very rare for me, I also know that he is doing the tests because he needs to do them. He isn't just curious so plays with my joints.  He has an idea and needs to feel my joints before he goes further on his idea.  While looking over my arms he asks if I have had a fever as my arms are so warm and then asks 'How long have you had this bump?'.  I had no clue I had a bump so he shows me where it is.  I don't think it is an EDS type of bump as it is not right on the joint but about an inch or so higher than my elbow (towards my wrist).  He goes through all of that and then tells me that I can go sit down again.  He then asks me if my feet swell in the morning and I told him that I honestly didn't know and had never noticed it but have also never looked at it.  I did mention that at the end of the day when I remove my socks I have indents where the tops where (I was told after knee surgery to watch for that as it indicated fluid build-up).  He jokes that he does too but then says (in a more serious tone) I guess I can't compare a young girl like you to an old guy like me.  He sits for a minute or two in silence than goes on with his thought. 

He asks when the last time he ordered bloodwork was and mom and I thought about it and realized he has never ordered bloodwork for me.  He goes "You have to be my only patient that can say that, but you won't be able to say that in a few hours".   He aks us (well mom really) if there is any history of Lupus in the family (there isn't) and then he asks me if there is a link between EDS and autoimmune disorders and I state that their is a higher likely hood that we would have them and they suggested routine (like every few years) testing to check for them.  He then states that he believes I have an autoimmune disorder but that he doesn't know which one so he is going to order bloodwork.  He gets the sheet out and starts just writing down different tests: Rheumatoid Factor, ANA, anti-DNA, anti-ENA, and some other names that I can't remember that were for autoimmune purposes, as well as liver and kidney function tests and the normal CBC type stuff.  Not only that but he kinda spooked me as he wants me back in two weeks to discuss the results.  I generally have only ever seen him every 3 months unless a problem has come about and I have to make an emergency appointment. 

After all of this I still had a few questions about the normal appointment to get out while my mind is going crazy with thinking of the outcome of all these tests.  I tell him that I have been taking breakthrough meds once or twice a day since I hurt my knee and should I be upping my long-acting one to reduce the number of breakthrough meds or is it okay to keep doing what I am doing.  He said since the breakthrough meds are working that I should just continue what I am doing since we do have a hard time finding the right balance, but when they start to stop working to come back to him and we will switch things up.  I also asked him if it was okay that if I took one dose and then an hour later I was still in pain, was it okay to take another dose.  He told me that he has no worries about me and that I am very 'sensible' with my meds and that doing a dose after one that didn't work was perfectly okay because I knew myself and my meds.  (That was nice to hear!).  When he went to write up perscriptions I mentioned that the amount he normally gives me for 3 months wasn't lasting as long because of the knee so he goes well I will give you 'X' amount then which I said was fine. Then he wrote it out as that amount per month so I am getting like 4 times my normal 3 month amount.  He then states that he knows its a big amount and that I will have lots remaining at our 3 month check-up but that he knows I am sensible with my meds and only take them when needed and that he just wants to make sure that I don't run out.  All in all it was a pretty great visit.  The only bad thing was that he mentioned he was probably going to retire in 2 years as he was 74 but that he enjoyed it so much that he wasn't sure.  (Mom and I would have pegged his age around 80!)

So we make a follow-up appointment for the 21st and headed out.  Mom asked if I wanted to get the bloodwork done today and we agreed that it was needed to be done that day.  That was thursday and on friday and monday I was working at Kyler's school with the bookfair and then on wednesday was going in for surgery (didn't want to use up a vein from bloodwork the day before).  The only bad thing about it was I had already had bloodwork two days prior.  Anyways we forgo the shopping trip and head home to get bloodwork done (the lab that is open in town doesnt use butterfly needles so I like to go to our small clinic in my hometown).  I go in and the nurses (can't spell phlembologists so I am going to go with nurses, hope that isn't a bad thing) immediatly recognize me and are kinda nervous and I didn't know why.  Well after they figure out that they can actually do all the tests (they can't do frozen ones there) I find out why.  They needed six FULL vials of blood.  Not that bad except that the only place and way they can get blood is with a butterfly needle on the top of my hand between knuckles, and the fact that I already had my right hand done on tuesday reduced the locations for veins in half.  Amazingly they were able to get the three full syringes out of my hand (normally we only need one syringe of blood so we needed three times as much as normal).  Becasue of the amount they make me sit for a while before getting up and then let me go home.  The nurse even told my mom to take me home and put me to bed for a while ;)

So we get home, I open a pop and have some of it (sugar sometimes helps) and then I crash in bed.  It was my night to go to karate with Kyler but I just couldn't make it and stayed home and stuck to the couch where I slept on and off too.  When mom and Kyler got home they had brought me a treat (they had to stop at Shoppers in town for a few things) of a Lindt Lindor White Chocolate (amazing!!).  We watched Idol and an episode of Buffy (I bought all the seasons so we are watching through them, we are on Season Three, Disc Four now) then I went downstairs and went to bed as mom and I were helping out at Kyler's bookfair the next day (Ill post that next).

So all in all I had been wondering about Sjorgrens as a possible to some of my issues and was going to ask my internist to run the tests.  Well my rheumy has beaten her to the punch and ordered all those tests and more in his search for what autoimmune thing is going on (seems he is leaning towards Lupus)