Friday, February 12, 2010

Doctor #2: Good News and Not So Good News

After an extremely long week, I'm finally getting around to writing about the rest of my "Day of Doctors" on Tuesday. I had a pretty rough morning, followed by an appointment with my primary care physician where we attempted to deal with the problem of my high blood pressure - which has been a consistent problem for nine months and is still not under control. So, needless to say, I was pretty exhausted by the time APL and I even made it to my rheumatologist's office on Tuesday afternoon. Note to self: while it seems like a good idea to get it all over with at once, maybe two doctor's appointments on the same day is not the best idea? Just a thought.

Doctor #2: Good News and Not So Good News

I feel like my appointment with my rheumatologist resulted in good news and not so good news. To start with, I have to say that I am really lucky that I like that I like my rheumatologist. I trust him and I feel like he gives it to me straight. He is honest, he doesn't sugar coat it, but always he listens to my concerns and takes his time with me. And, after seeing him for a year and a half, I feel like he has a pretty good idea of what I'm going through.

The good news is that he thinks my RA is under "fair control." After examining my joints he said he thought they looked pretty good - certainly in better shape than when he first started seeing me. So I guess that's a good thing that the expert thinks my joints are looking pretty good.

Also, since I trust him and feel like he understands me pretty well, I asked him for some advice for getting other doctors to understand my pain threshold and better evaluate the amount of pain I am in so that my positive attitude doesn't backfire on me anymore. He gave me what I think is some very good advice - to describe my pain in terms of the amount of pain killers I have to take and the things that are difficult to do. For example, I can say that I am prescribed vicodin for pain on a regular basis, and while it helps sometimes it isn't enough. And I can say that the pain sometimes distracts me from paying attention in class or keeps me from going out to dinner. In my rheumatologist's experience, this is an effective way of making pain more understandable. So that was really helpful.

He also totally understood how much I dislike the side effects of prednisone and we agreed that we should wean me off of it. So I'll be taking 2.5 mg of prednisone for the next 10 days and then I'll discontinue it completely. He warned me that it will be the true test of whether or not the ENBREL is actually the complete solution for me. If it is, I'll probably feel fine without the prednisone. But if it isn't, I'll probably start swelling and being in a lot more pain than usual. And if my symptoms worsen dramatically over the next few weeks, he said to give him a call and he would fit me in even if his receptionist tells me he has no time, which was pretty awesome. In that case, we'll move on to another biologic - he says he thinks the new RA drug, Actemra, has had really good results. So as far as that goes, I guess we'll just have to wait and see what happens when I stop taking the prednisone every day. While I'm not looking forward to potential pain from discontinuing the prednisone, I'll certainly be happy to (hopefully!) say goodbye to the fat face.

However, the rheumatologist also gave me what felt like less than good news. Unfortunately, he doesn't quite understand why I've been having so much pain in my hips. He said it was pretty unusual for RA to present with hip pain - that hips are usually not affected when the rest of the joints are doing ok - so that my hip pain was probably unrelated to RA. Based on what has happened to my knee - patellar subluxation - he thinks I might also have something called hypermobility syndrome. While I'm not obviously double jointed, people with hypermobility syndrome have increased flexibility where their joints may be easily injured, they may be more prone to joint dislocation (ahem, my stupid knee popping when I did nothing more than sit down at a desk), and they may also develop problems with muscle fatigue - which may be what's going on with my hips. So I have to admit that I am less than delighted at the thought of additional problems with my joints. For now we're going to keep an eye on the pain in my hips and consider x-rays to rule out RA joint destruction if my hip pain continues. So the hips have also become a waiting game.

The other sort of icky news was that my rheumatologist also told me he was a little worried about how I was mentally dealing with all the adjustments I've had to make. Granted, after the argument I had with APL in the morning, my first doctor's appointment that day, and the rough physical therapy appointment I had on Monday, I was not in particularly good shape by the time I made it to my rheumatologist's office on Tuesday afternoon. Not going to lie - I was basically crying while we talked to him. So, just as my primary care physician recommended, my rheumatologsit said maybe I should pursue some therapy.

And maybe they are right. I mean, if two doctors separately tell you the same thing on the same day, I guess you have to give some credit to that opinion. But, at the same time, I do think I've come a really long way in the past year and a half. For the most part, I think I've done a really good job of accepting these changes into my life and embracing my new path. At least I feel that way most of the time. So it was sort of discouraging to hear both of my doctor's say they were worried that I hadn't accepted the RA. Not going to lie, this did cause some good crying at the end of that day over how frustrated I feel about everything I have been through not being obvious to the rest of the world.

But APL was there to hold my hand as I cried while he drove me home. And when we got home, we spent a good half hour just laying on the floor, snuggling with River, which brought a smile to my face despite the tears. And, even though I know I have come a long way, I guess there's nothing wrong with asking for a little more help.

I guess we'll just have to wait and see what happens.


~kelly marie~ said...

What a day for you. Wow. I am sending you major hugs.

It seems like we've developed more in common. I have been told about the hypermobility too, and my pain first started in my hip, so that may be the case for you too. The good thing with this is that PT really helped it.
I was also told to get my head shrunk by many physicians. I finally went to a guy whose specialty was this kind of thing. It was actually really good. I went for a few months and he gave me some good coping skills. I seriously didn't want to go either, so for me to say it was good, well, says something!
You need to do what is right for you, though, and you will know what that right thing is.
Until then just know that there is a hypermobile, hip-paing-having, head-shrunk buddy near by. :)

~Mariah~ said...

Thanks, Kelly. I ALWAYS appreciate your advice, seeing as you've been doing this a lot longer than I have. Many hypermobile hugs to you as well. ~;o)

~kelly marie~ said...

I am glad I can offer something. I would hate to ever come across as pushy or anything! I always think you should do what is right for you! And I am always here to support you :).

A hypermobile hug sounds so funny! hehe!
I hope we can visit sometime soon and that you get a break sometime soon, too.

I am in the process of ignoring all medical professionals so that I can enjoy the release of Lawn Fawn. I don't want them spoiling this for me. Childish? Yes. But I don't care. I already had one ER visit this year. I need a break! - By the way, don't take this advice! A crazy girl is talking! A crazy girl that feel free for just a few short weeks.

~Mariah~ said...

Not going to lie: SO JEALOUS OF THE CRAZY GIRL!!!

Also, APL and I will be in LA for a wedding May 8 and might be able to stick around in LA for a few days to visit with people. So please tentatively mark your calendar!!!

~kelly marie~ said...

I have the calendar marked!

Dude, crazy girl is starting to get exhausted. Like big time. I just need to make it until the 10th!

I think I can! I think I can!

~Mariah~ said...

I KNOW you can!! ~;o)

~kelly marie~ said...

You said the best thing at the best time! I heart you! :)