Saturday, June 29, 2013

It's Facebook Official: Prednisone and I are "In A Relationship"

Prednisone: To refill? Or not to refill? THAT is the question. 

Christine, authoress of Thoughts and Ramblings on Life, Love, and Health has written an excellent post describing her relationship with a drug that many of us know all too well: prednisone. (Can a person actually have a relationship with a chemical compound? You betcha we can. Especially with a drug as powerful as this steroid.)

Like many of us, Christine is reluctant to become dependent on immunosuppressants and immune modifiers to manage her disease. But because she's in tune with her body's signals and needs, she also knows when it's time to make use of some of those pharmaceutical tools that are available to us:
I guess what this current run with prednisone is teaching me is that my medical treatment does not have to be all black and white. It doesn't have to be the doctor's way or my way; the rheumatologist's way versus the integrative medicine practitioner's way, and it doesn't have to by high doses of prednisone versus nothing at all. It's about listening to my body and trusting myself. It's about trying to combine the best of what integrative medicine and traditional western medicine has to offer while aiming for the one most important goal: to get my body to a level of functioning that is sustainable and tolerable to me as an acceptable quality of life. I know I will never not have Sjogren's; it will never leave me. But meanwhile, I will continue to do my best to optimize my health and give myself the best life possible.
If you are a regular reader of her blog -- and I suggest it highly -- you know that when Christine penned these words she spoke from real life experience which makes her goals authentic and legitimate, not pie-in-the-sky.

Mmmmm. Pie.........

.::Blink::.  OK. I'm back.

But as far as defining MY relationship to prednisone, as much as I'd like to be able to quote Christine and say with honesty that I too feel able to completely trust my instincts about my health, I......well, I just can't. For a variety of reasons. Which is not to say that I think Christine is in error when she judges herself to be capable, I don't mean that at all. I am quite sure that she knows of which she speaks.

But I know without a doubt that it's very difficult for me to make assessments of my overall state of health and more importantly, what THIS is:  ".... a level of functioning that is sustainable and tolerable to me as an acceptable quality of life."  

What's sustainable? What's tolerable? And where does my state of being fall into that continuum? Even after ten years of dealing with Sjogren's syndrome and it's buddies, I don't know how to define what an acceptable quality of life is for ME.

I was trying to describe my varying degrees of tolerance to disease related stuff to my friend the other day, and this seemed to be the best example. I told her, "So when I feel really really awful, and I drag myself off the couch to go to the bathroom, I look in there and think, Oh, good. There's a toilet. After which I do my thing and then plop back down on the nearest horizontal surface. But when I'm feeling better, I can go into that same bathroom and say, AAAAACCCCKKKK! Where's the toilet brush and cleaner and mop and....!! Tolerating less than ideal housekeeping standards is easier when expectations of myself don't include doing any house cleaning at all.

I can expect that a tolerable quality of life would never include a fatigue/energy level that would produce a really disgusting toilet. But, unfortunately......I also know that there is a very strong likelihood that there will be flares in my disease activity, which mean that I would be forced to ignore the can of Scrubbing Bubbles and toilet brush sitting conveniently next to the toilet.

So when I'm feeling good, I have very unrealistic expectations of my long-term goals for my health, but when I feel absolutely crummy, the opposite is true as well: If could only take a shower and do my hair and get dressed without breaking out in a body-wide sweat, I would be a very completely and totally happy sjoggie. Seriously. That's all I want. Ever.

MmmHmmm. Riiiiigggghhhtt.

The periodic use of prednisone only muddles the situation further, because when I am cruising around on 60 mg, I can do ANYTHING. Just grab me as I go floating by and ask. I'm screaming around the house like: Let's plan the Christmas dinner menu for the next twelve years! I'm going to lose twelve bazillion pounds and be a size zero by next Thursday! Break out the want ads -- I'm going back to work full time. Tomorrow!


Which brings me back to the question: What would be the best and most therapeutic use of the drug prednisone in helping me reach that quality of life that I would describe as Reasonably Well? As opposed to feeling Reasonably Crappy?

If I could accurately define what Reasonably Well is, I probably could answer that question.

Dr. Young Guy and I were discussing this very thing on Wednesday. I found a fabulous box of chocolate truffles that were packaged with Fourth of July stuff printed on it. How seasonal is THAT? He made his token protest about me bringing treats but snagged it quickly.

What was I talking about? Oh, righto...

So after the candy hand-off, Dr. YG made a comment about my face. Which made me want to grab the box of truffles right back. Lucky for him, after a second I realized that he wasn't talking about my beauty or lack thereof, but rather what higher dosed long term prednisone was doing to the shape of my face. Right now I could be a reluctant poster child for the term prednisone "moon face". Yeah. I only WISH that I actually looked like the picture on my blog sidebar.....

So we talked a bit about how prednisone and other drugs have affected the long-term quality of life for me. I told him that in all honesty, I would say that I'm not satisfied right now. Because we still are not certain which drugs may or may not have contributed to my neutropenia, many of my meds were discontinued, and now are being slowly reintroduced, a month at a time, and with frequent CBC monitoring.

And, since some of those drugs such as Plaquenil ease joint pain and boost energy, I'm feeling their absence acutely.

Wah! I HURT! I told him. Which is when our discussion turned to balancing the use of certain medications which have significant side effects, with acceptable levels of disease activity.

Because of the kind of guy he is, Dr. YG looks to me for significant input into these types of decisions. And, at this point, I've decided that I am willing to put up with some chronic pain if it means that I can reduce the dose of prednisone (and hopefully the carb cravings and moon-shaped face and decreasing bone density) that I'm currently taking. I know that I can contact him at any time if I feel that I may change my mind at which point we could discuss increasing my dose.

And so here I am. Prednisone and I are in a very long-term relationship, but like so many others on facebook, this one is complicated and rather tortuous.

Marriage and family and friendship relationships? Pffft. Piece of cake.

Mmmm...... Cake.......

.::Blink::. OK. I'm back.

DRUG relationships? Now those are hard.


Christine said...

Funny story: I went to read this post because "prednisone" was in the title and I'm like "oh, interesting, I just finished my week course". Then I clicked to the page and there I am...LOL.

Thank you for the kind words about the blog and entry. I really like how you talk about what is tolerable and sustainable because I agree, we are all constantly trying to figure that out for ourselves...especially in regards to prednisone.

I, too have done the same thing with running around yelling about how I am going back to work full-time, tomorrow! And I love cake and pie too...

Annette said...

Yes, when you feel good life is a piece of ... cake(?). I'm feeling as though I should ease up on the Nsaids but I don't really want to. When I forget to load them into the pill container I look for reasons why I am feeling so beset. At least there's an answer to that.

It's amazing where the time goes, and at the end of the day I still have no pie.

Heidi said...

I love you girls and your ability to look at this disease process with a sense of humor. It is a constant balancing act isn't it. I have been off prednisone now for over 6 months after a 2 year period on. The best I have felt is when I had a series of cortisone shots on my foot, two shots a week apart. I felt like I was cheating but boy I felt wonderful for a while after.