On Tuesday morning I broke down and called the rheumatologist to ask if there was any way to fit me in before next week because I just felt so gross. They got me in on Wednesday afternoon, which was awesome. I have to give my rheumatologist (and his awesome nurse) credit for always responding to me quickly when I finally work up the nerve to let them know I'm struggling.
APL also left work early to go with me, which was also awesome. Sometimes I get really overwhelmed at the doctor's office and forget to tell or ask the doctor things I meant to. Generally, APL and I sit down the night before an appointment and make a list of things to ask about, but sometimes I forget things even when I have a list, so having APL there is really helpful. Plus, sometimes he remembers stuff that I forget or that wouldn't occur to me to say. And just having him there makes me feel better. So I'm really grateful when he comes with me.
We told my rheumatologist about how I have been feeling and he did an exam of my joints. None of them were really swollen and of course my knees weren't actually hot while I was there (why would my body cooperate like that?) so he had to trust us on that one. We talked about the possibility of switching from Enbrel to Orencia, Rituxan, or Actemra, but he was reluctant to do so because he thinks the RA itself was actually under fair control and that there could be other causes for my current pain and malaise.
We took x-rays of my knees (and, while we were at it, of my feet and hands to check for RA damage) because he thinks that patellofemoral pain may be a contributing factor of my knee pain. This has something to do with how the patella tracks along the groove of the femur. Considering that I have definately already had trouble with my patella, this seems pretty reasonable to me. As I understand it, a possible cause of this pain can be weakening of the muscles that work your knees, which also seems reasonable considering I've been much less active over the past two years. Apparently he will be able to tell whether this is likely from the x-rays, and if it is then I will need physical therapy to help with that pain. If it isn't, well we'll cross that bridge when we come to it.
He also ordered blood tests to check for other causes of the fatigue. But, if those turn up negative, he seems to think my "malaise" is caused by depression. I honestly don't like this idea because I do feel like I'm doing a lot better and feeling a lot happier, and I certainly have less stress since the semester ended. But I'm sure my rheumatologist is more experienced with watching patients adjust to an RA diagnosis.
As much as I would really like to take fewer drugs instead of more drugs, I mostly just want to feel better. My rheumatologist says that there are some anti-depressants that have been shown to help with pain as well, so I guess that sounds pretty good. So we're trying Cymbalta, which is prescribed for depression and general anxiety disorder but also for diabetic nerve pain and fibromyalgia (which, as far as I understand it, is major pain with a pretty much unknown cause).
Even if I actually need the drug for depression, I have to admit that it somehow makes me feel better that it is also used to treat pain. I guess that's because I don't want depression. I want to be able to say "it must have helped with the pain" if the drug makes me feel better. I don't want to think of myself as depressed. I want to be happy. I want to be healthy. I want to be doing a good job handling everything that is happening to me and my body. But I guess I am actually doing a good job handling everything that is happening to me and my body. Asking for and accepting help is part of doing a good job.
However, I also have to admit that I really had mixed feelings about putting this depression treatment in this blog. It somehow feels more personal than the bloody belly-button (though I'm sure some of you will disagree!) But these struggles are certainly part of my RA journey, even if I don't completely understand them myself. And the purpose of this blog is to help me figure myself out and to be an honest record of my RA journey. I'm trying to accept the fact that it's ok for me to struggle. I want to be ok with needing help and asking for it. I'm not there yet, but I'm trying. And if putting my own struggle on this blog helps someone else with theirs, even a little bit, it's worth it.
You are so strong! I think, sometimes, there are things our bodies are saying that we can't even hear. Maybe your mind and soul aren't depressed, or even as confounded, as they were upon the initial diagnosis, but perhaps you have a depressed knee. And you know what they say, if the knees ain't happy, ain't nobody happy.
ReplyDeleteDo you think your knees would like cookies?
I love you! Thank you for sharing, sweetie.
A very honest post. Great job. I often struggle with the depression question. I think I am finally, after 6 years, ready to say "I'm there. I need help with this part." I will do so at my next appt.
ReplyDeleteI vote for depressed knees as the real diagnosis.
ReplyDeleteAnd I do have to say, although I know I'm not there with you most of the time, you've come a long way and I think you're handling it all like a champ. I would even slap you on the butt like a coach if I were there - it would drive the message home in a way words just can't. (Gross. Why are men so weird?)
A: Since I can't have you (which I would obviously prefer) I will take those cookies now. ~;o)
ReplyDeleteSUPERBITCH: Thanks. Honestly. It's easier to tell my friends (A & LK are old friends) but much harder to think about telling the world. So I really appreciate your comment. I hope your next appointment helps you too.
LK: Thanks for the butt slap. ~;o)
Hi Mariah,
ReplyDeleteThanks for your honesty. You're right - it does feel more personal to talk about emotions than whatever physical condition we may be in. But, I think all of us can relate to the rollercoaster of emotions that goes along with a chronic illness. And though I don't remember my own diagnosis, I know it isn't something that is easily or simply dealt with.
Thank you for sharing your own ups and downs with us.
Helen
Thank you SO much for sharing that. I know I have been mildly depressed off and on since before I even was diagnosed with RA, but lately, it's been really, really rough. I am finally going to see someone about antidepressants in a couple of weeks and am really looking forward to it. I don't want to add one more drug to my list, but if it can help me feel better overall, I think that will be worth it.
ReplyDeleteThanks for all the positive feedback on this one, everyone. I was really reluctant to write this post (and to take even more drugs) but I am feeling glad that I did (though I'm not sure yet whether the cymbalta is helping...)
ReplyDelete