Wednesday, February 26, 2014

My lupus decision making process, better known as R-E-L-D!

When I'm faced with a big decision regarding my health, as I feel I am now re: the choice of starting a big gun medicine like Methotrexate, I tend to follow a pattern. In fact, my modus operendi looks something like this: Resist, Educate, Listen, Decide.

Step 1: I "resist" the change to begin with, be it a new drug, a lifestyle change, or an alteration to my routine. Whatever "it" is, I don't like the sound of it the first time it's suggested to me. Sometimes, I reject it outright, like I did years ago when it was suggested that I order my groceries online. I was sure online ordering was only for the sick and disabled...and it wasn't until I wised up a few months later that I realized having my groceries delivered was designed exactly for people like me (the sick and disabled!) Other times, when faced with a new suggestion, I turn up my nose at the idea, but reluctantly agree to consider it. Either way, an immediately welcomed change, it is not.

Step 2: I decide to "educate" myself about whatever change has been suggested - forcing myself to research, talk about, or explore the pro's and con's of said change. I used to not enjoy this research part very much...but now I actually find it very empowering. The longer I have lupus, the more comfortable I am probing other people for information, be it patients who've experienced the same thing, or medical professionals who could weigh in on the situation. If I think someone might have a morsel of information that could teach me something about the subject, I ask.

Step 3: I open myself up to "listen" to signs and signals that point me in the direction of a decision. I will myself to become more attuned to coincidences, and make an effort to make connections that I might otherwise dismiss. Like the time I happened upon a story in a magazine where a woman was talking about her struggle to decide to go part time at work. I was, at that very moment, struggling with my own decision to take a part-time position at my office. I could have just brushed off the occurrence, convincing myself that the circumstances surrounding her deliberation were surely different than mine. Instead, I read the entire article, and took it for what it was: a sign that if this random woman in a magazine could muster up the courage to go part time, so could I. In instances like these, I attempt to embrace the coincidence - chalking them up to fate, divine intervention, or what have you. I figure I can use all the help I can get! (Here's another example of acknowledging the signs around me - in my decision to start Cellcept years ago.)

Step 4: I "decide" on a course of action, based upon the process above. By the end, the choice to be made has usually become so crystal clear that I have very little difficulty making the call in the end.

Of course, sometimes I wish this little ritual of mine wasn't quite so predictable. I wish I could break away from the structure of my decision making process and just spontaneously come to a good, solid conclusion within moments. But it doesn't work like that. And it probably shouldn't, if I'm to make prudent, well-thought out decisions. And so I've learned to expect my ritual. I know the steps to take, and I know how the process is going to go.

And so it went with my decision on whether or not to start a big gun drug like Methotrexate: I resisted, then researched, then randomly picked up a book club book, only to read about one of the main characters being on, drum roll please, Methotrexate. Thus, I decided that everything was pointing me in the direction of starting the drug, including the fact that my prednisone taper wasn't working. I went back to my doctor, and confidently told him that I was ready to start Methotrexate. It just took about two months for me to realize it. Not bad in the grand scheme of things. I'm just glad the book I read was THIS month's book club book...rather than our casual summer reading!

In an upcoming post, I'll tell you in detail the plan that came from that most recent doctor's appointment. Never a dull moment in lupus land, I know that!

11 comments:

SS said...

I can't believe how logical you are when making big decisions and also that you have analysed how you do it too. This has really helped me. I don't have Lupus but I do have other autoimmune diseases that, while they don't define me, require lots of medical decisions.

Sara Gorman said...

Not sure how logical and level headed I would stay if I didn't have a little system!! :) thanks so much for commenting--i really appreciate it!

Debs said...

I have been wanting to ask you, why do you call a drug like methotrexate a "big gun" drug? I have similar names for some because of difficulty in taking them or the way they make me feel personally, that has nothing to do with the printed label side effects. I have gone through the maze of trying other drugs, only to "settle" on the original one. Which is not ideal at all. That means I have given up some part of my life that I don't think I had to give up. But I got tired of more pain & life disruption instead of less. The last change just wore me down after 8 months of trying one more month on this drug or changing to this drug & trying all over again. My Dr & I deciding to change a drug, is in addition to the FDA stepping in & taking away a drug that is working or changing the compounds & having to change medications because of government "keeping us safe" & not trusting doctors that are specialists & have state & federal laws already in place. Obviously, I'm not happy that when I had a regime that worked, that the FDA interfered with my treatment several times over the years. It's not as if the FDA can take lupus away, or can they if their focus was changed?

Gabrielle said...

Thank you! For me, this post was the equivalent of the book club book you referenced. Wednesday is my "methotrexate" day and, even though I have committed to it and have taken a few doses, there is still a touch of resistance (the prednisone taper isn't working for me, either). Your writing helped me decide. I wish you well!

Sara Gorman said...

Ugh! I'm sorry you're not able to use what was working anymore. You must have been so mad when u heard. It's so challenging to find one that does the trick in the first place! I hope something else can take its place for u eventually. As far as my term "big gun", I suppose it's a combo of the way the drug makes me feel to be on it, the limitations of the drug (like no pregnancy), the possible side effects (like lymphoma), the fact that it's a second line of defense for me (because my first line defense of plaquenil and prednisone weren't doing the trick), and the fact that when i:'m considering these drugs, I'm usually pretty sick. All those factors just make me take a step back and say " okay, I'm sick, and I'm not getting better. it's time to hit Lupus with some serious arsenal...aka a big gun. Hope that makes sense!

Sara Gorman said...

Oh I'm so glad the post was good timing. Best of luck with the drug...and the taper. I haven't begun to taper prednisone again--waiting until my cellcept kicks in. Enjoying the stability while it lasts!

Debs said...

Yes, Sara. The FDA changes did make me mad, several times over the years. And I see where the big gun drugs comes in. As you said, a change in medication is because we're not feeling well. Anyone would say that is not an ideal time to try to make a major decision. I'm praying the methotrexate kicks in for you & the prednisone taper works as well.

Debs said...

*I think you're on Cellcept, not methotrexate. Oops!

Sara Gorman said...

I knew what u meant!! And your prayers are much appreciated. God would have figured it out, too. I imagine all immunosuppressants look the same to him. :)

Anonymous said...

Hi! Does methotrexate really helps? Im afraid of starting it.. My doctor recommends to use it.. But i disagree. Im afraid.. :(

Anonymous said...

Hi Sara. I found your blog a few months ago when I was researching methotrexate. Your thoughts here are exactly what I was thinking but couldn't put into words! Thank you! By the way, I did start the methotrexate and while I'm not back to "normal", things are slot better.