Thursday, June 11, 2009

Let’s “Talk About It, Talk About It, Talk About It, Talk About It”

“Won’t you take me to Funkytown?”

Well, that’s pretty much the way I felt about this latest rheumatologist appointment, which happened yesterday. I’ve pretty much been dreading it for the past six months. At my last appointment in November, things did not go well (see my post “It’s A Numbers Game”). I was not in a good place at the time, and Doctor C appeared wholly unsympathetic to me.

Things have cropped up during this hiatus that I’ve tried to ignore, because I promised myself that since Doctor C was cutting me loose for six months, I’d do everything in my power to keep it that way. Plus, there are some downward awkward conversations I knew were going to be had; conversations that I don’t really ever want to have with anyone, let alone my rheum.

I went into this appointment thinking that I was either going to fire Doctor C or he was going to fire me. And that didn’t happen. But the truth is, I think I might get fired next time if I don’t hold up my end of the bargain. I pretty much can’t slow down until I’ve reached PhD candidacy. But that means that once I’ve passed my first prelim (fingers crossed) at the end of August, I will need to start putting myself first. How many times have I made that promise (and broken it)?

So let’s talk about symptoms. First, new; photosensitivity and mouth sores. Second, returning/worsening; dry mouth and eyes (I might as well embody what it means to be a “dead fish” in the relationship; put in a nicer way, “a fish out of water”), right hip pain and stiffness, dizzy spells, lack of appetite, and severe pain episodes.

But the truth is, while this may seem like a laundry list of symptoms, which it basically is, that’s not the point. The point is that these illnesses have become a liability, a quality of life issue. And that’s what I need to tackle at this point. It’s not so much that these individual things are so troublesome, but the fact that taken together, they are really putting a crimp in my life.

I’m trying to live the fun, exciting, carefree life that a 23-year-old should be living, but lupus and rheumatoid arthritis are making that pretty difficult right now. And that’s what I want Doctor C to understand. I’m having a hard time navigating the awkward conversations that I need to have, and I worry that if I don’t learn how to have them, I’ll become reclusive (or worse).

In the past, it has been about, simply put, keeping me functioning. It has been about reducing pain. But being away from my rheum for six months, it has become more than that. It’s about wanting to be able to live my life. Last year I was really unhappy because I felt bad nearly all the time. But this year has been a test of my physical and emotional wit. I will feel pretty good for a few weeks, and then I’ll flare violently for a few days, sometimes for reasons known to me, sometimes not. This usually spirals and sends me into a depression. Then I move on, and the cycle repeats itself.

Does Doctor C want to hear that in two years, I’ve only had two really good, nearly pain free, practically illness free weekends that I can remember? The first was my sister’s Bat Mitzvah last October. I had just entered the sick world, and it was the last time my family was all together and happy, and I wasn’t “really” sick. The second was more recent. Memorial Day 2009. And does Doctor C want to know that I wish everyday could be a throwback to that weekend? For some obvious and not so obvious reasons…

But see, these are the things that I never utter in my appointment that I wish he could know. I mean, don’t get me wrong, five days of happiness is a lot better than none. But really? Five days out of 730? That’s exactly 1%. I really hope, I have to believe that we can do better than that.

(And okay, so I’m sure there’ve been a few other good days here and there, but when I was pouring over them in my brain, that’s all I could come up with…)

I’ve had an interesting (read: strained) relationship with my rheum. But what I think it comes down to is something I’ve been struggling with a lot of people in my life lately. I don’t want a hero who is going to pick me up and carry me through life. I want someone who’s going to be there in good times and bad times, and who is going to be there to help me through the hurt, not try and spare me the hurt altogether. Because inevitably, the hero is going to trip, fall, and drop me on my ass, or more likely, my bad hip. And that does no one any good.

I guess what I’m trying to say is that I would put Doctor C in the “hero complex” category. Doctor C wants to be able to fix everything, and he can’t do that, and I know he can’t, and he knows he can’t. And as much as I would love my pre-lupus/RA life back, that’s not going to happen. So now I have to live the best I can with what I have. And I feel like in the impersonality of the rheum clinic, that gets lost a lot of the time.

But of course, there’s always the comical occurrence that happens when I’m at a rheum appointment. So, my right hip has been giving me a lot of problems. So Doctor C says he’s going to take a look. And he starts pressing on it, and when I hit the ceiling in pain he says, “Yep, you’ve got arthritis in your hip.” And I’m thinking, I could have told him that. Really, 10 plus years of med school for that? Thanks doc, really, thank you.

So again, nothing changes, except prednisone is back in the picture (and if you missed that chapter, there are many anti-prednisone posts to pick from; and I feel like I’ve finally gotten my body back in shape from the first prednisone debacle, but that’s a whole other story entirely). That’s right, the “p” word, but only on the bad pain days. We’ll see what happens… I do understand Doctor C’s point of view. More medications mean more side effects. More side effects mean, well, we all know what that means. And the words leave of absence were uttered again by my rheum. But I’ve explained to him and the readers of this blog more times than I can count why that isn’t a possibility, at least not right now.

So, I’ve been cut loose for another six months. But I won’t be stubborn and pigheaded this time. I won’t pretend that I can hold everything together on my own. And I can’t operate full speed ahead anymore – and I’ve known this for a while – but I have to own up to it now.

And because we all need a little comic relief once in awhile, movies that have “rheum” in the title…because I’ve been obsessing over this for a while now…don’t know why:

“A Rheum with a View”
“Boiler Rhuem”
“Breathing Rheum”
“Mad Rheum”
“Music From Another Rheum”
“Panic Rheum”
“The Rheum”

It’s a little scary that all these titles sound foreboding. This list is not scientific or exhaustive, so if you have any others, throw them at me!


  1. Well I know this title doesn't have "room" in it but I still think it sounds funy. "Rheumy and Michelle's High School Reunion." Corny I know, sorry!

    I was just told yesterday that I should check out your blog. Sorry you have to go back on prednisone, eeks! Doctors are clueless, I have a hard time talking to them. I try to explain what's going on but 99.9% of the time I just say I'm ok.

  2. I've been taking prednisone for 4 years - between 10 and 25 mg. But lowering quickly guarantees a face plant. How do you manage to only take it some days?
    I've recently tapered back to 10 mg. and my moon face is waning, I think, though I'm still shaped like a watermelon. Trying to figure out how to get the benefits without the blubber. Am I dreaming?
    p.s. I have psoriatic arthritis and sjogrens...

  3. Right hip pain is my nemesis too. How I can tell if it's going to be bad. So tell us more about this periodic prednisone? I've only done the p once, and it was a godsend as i was in extreme pain to start, but I know what you mean, almost a year later I feel i'm just recovering from the prednisone.

    Also, your mouth sores, what are they like? I've gotten a few kanker sore type things in my mouth the past weeks, and more headaches, and was wondering whether that meant a flare coming. Would ask my rheum but i got cancelled again. Now at a 13 mo wait for a 3 mo followup. November?!

    Anyway, hope you're feeling improvement, and that the light at the end of candidacy/phd stuff is coming!

  4. Loverly,

    "Rheumy and Michelle," I love it! High School Reunion."

    I always love new people stopping by, so I'm glad to hear that you were referred. Thanks for reading!


  5. Patti,

    This is the first time I'll be taking prednisone as needed. I'm not sure how it's going to work...

    I think all of your side effects are pretty common with prednisone. I had insatiable hunger, moon face, and cystic acne, none of which really got better until I had tapered to one mg.


  6. Jessica,

    This is the first time I doing a prednisone regimen in this way. I've had a lot of questions about it, so I'll try and keep updating the blog. Haven't got the prescription filled yet, so there's no news to report yet...

    To me, the mouth sores remind me of when I had braces as a kid and the metal would dig in to my cheek. To me, they are monster canker sores - very deep, and take a while to go away.

    Sorry to hear about your appointment issues. That stinks. Do you think you'll be able to manage?


  7. So let’s talk about symptoms. First, new; photosensitivity and mouth sores. Second, returning/worsening; dry mouth and eyes

    Did your rheumy suggest that you might have Sjogren's syndrome secondary to the RA? My own rheumy prefers to treat only the rheumatoid arthritis part of my disease. I have pushed for various treatments to deal with the dryness. I have found that using my Restasis helps my eyes tremendously and I use salagen take care of the dry mouth. For mouth sores I take over the counter folic acid every day. It does help.
    It does not address the real problem of living a 23-year-old life but it makes things more tolerable.

  8. Annette,

    Thanks for the recommendations re:dryness aids. I know I've been tested for Sjogren's before, but I don't think recently.

    You know, my rheum and I play this game; I talk, he listens, and then he doesn't say much. I decided not to push things this time, but I'll definitely try the things you've recommended.



  9. Hey L,

    You know I've got cancer, but we still have a lot of doc crap in common. My docs used to go down the laundry list of things that were wrong with me and then would follow up by saying "glad you are doing so well." It so pissed me off.

    Then I realized that compared to their patients who are dying I was doing well. That wasn't such an acceptable standard for my life "at least I'm not dead"... but it did help me to understand where my doc was coming from.

    Also, his other patients were older and measured their quality of life quite differently than mine. Ultimately I just realized I had to talk straight up medical with him, and be bold in my question asking: "I feel x,y,z symptom, can you or can't you do something to change it?" It was a hard struggle but I learned to present my qualitative challenges in quantitative terms.

    Now I have an incredible doc who is brilliant and gets me ... a rare find!