Living with lupus: Speak up, because it's all in the details!

Over the summer, I had the (not-so-fun) opportunity of honing my speaking skills at the doctor's office. I had a bout of strep throat in June, immediately followed by pneumonia that hadn't cleared up by mid-July. So there were x-rays, and follow-ups, visits to my specialists, as well as interactions with new doctors. (In fact, I'm still finishing up my final evaluations.) At each juncture, I met with medical professionals who needed a concise, but thorough explanation of my current symptoms, as well as my health history, particularly as it relates to lupus. 

Truthfully, I was out of practice. 

It's been awhile since I've had the spotlight at the doctor's office. My lupus is fairly well-managed, and my visits to my rheumatologist every 3 months are typically uneventful. We discuss my current cocktail of Cellcept, Prednisone (maintenance dose), Plaquenil, Cozaar (for kidney damage), Iron (for anemia), and Baby aspirin, sometimes tweaking one or two in an effort to reduce my medication while maintaining my current level of wellness. I always jot down notes before my appointment, but things go pretty smoothly, primarily because there's nothing to tell. Three cheers to that! 

(I did have what I'll call "appointment articulation" practice earlier this year because of that pesky swollen lymph node I've blogged about, as well as a series of abnormal mammograms (blah!), but I didn't need to recount too many past details for those.) 

For strep throat and pnuemonia, it was all in the details. 

For the first handful of interactions I had with different medical professionals this summer, I did pretty well. But by mid-July, when my follow-up x-rays still weren't showing up clean, and the general practitioner with whom I followed up was stunned (read: worried) by it, I lost my focus. 

Was I rattled by the poor test results? Yup. Was I surprised that the doctor was so rattled? Absolutely. Was I preoccupied with his suggested course of action which included another round of antibiotics (my third), an emergency visit to my pulmonologist, and more x rays in a few weeks? Oh yeah. 

(It's important to note that for weeks, I'd felt fine. In fact, within days of starting my second antibiotic 6 weeks before, I felt 100 times better. Within a week, I had zero symptoms at all.  So when I walked into that particular appointment, I was expecting a clean bill of health. No more symptoms. No more follow-ups. No more spotlight.) 

But that's not the way it happened. 

I was asked for details about my past lung complications with lupus, about my lymph node trouble, and about a host of other past or current symptoms I didn't have queued up in my head. So when it came to getting a prescription for a third antibiotic, I got lazy. The doctor asked for the names of the other two antibiotics I'd taken, which I recounted correctly. I even managed to include my allergy to Augmentin, an antibiotic I know I can't take. But I failed to finish with my customary, "and I had a slight adverse reaction to Cipro (another antibiotic) once." I almost always include that bit, even though my reaction to Cipro wasn't a severe one, and it's a bit inconclusive as to whether the reaction was the medicine or something else. 

But this one time, I skipped it. 

And guess what drug I got? Not Cipro (I would have balked at that, of course!), but a cousin to Cipro, and I wasn't aware of the connection. So off I went, shocked, dismayed, and leaving my doctor uninformed as to what my drug allergies/reactions really were. 

So the good news is that now I know I am definitely allergic to Cipro, and its cousin Levaquin. Within a few days of starting the drug, I experienced pretty significant joint pain. Well, actually, it wasn't joint pain...but it was pain when I moved my joints...which was weird. I had recently restarted my workout program (because remember, I was feeling 100%), so I thought maybe I'd just started back with too much and too quickly. But it continued, even with a couple days off...so then I thought maybe I was starting a flare. But I felt great...and it wasn't my typical swollen fingers and sore hands. It was pain...in my hands...but not my joints. Double weird!

Thankfully, I had an appointment with my rheumatologist a few days later, and it was the first thing on my list to discuss. I was prepared this time - and recounted everything that had transpired, even bringing my xray cds with me (they lived in my purse for the summer!) I included my regimen of antibiotics, and he immediately said Levaquin was the culprit. You can read about it here - but it turns out the drug can cause tendon pain and damage. That's exactly what I was feeling. Not my joints. My tendons! 

So I stopped the Levaquin immediately, and have added it to my list of medication allergies, which I will never again resist sharing. 

As mentioned, I still have two more follow up appointments regarding this bout of pneumonia...but I'm optimistic all will be fine. But if it isn't, I will enter with a clear head and an agenda - to make sure my doctors are fully informed with the details of my health history. It's my responsibility, and I will accept the challenge! 

Here are just a few quick tips for remembering the details. There's a chapter in my book, Despite Lupus, devoted to strategies for effective doctor's appointments. You can read a few of them here, or take a look at my quick list below, which includes a few extras: 

1) Write it down. 
2) Practice your delivery.
3) Take someone with you. 
4) Ask questions.
6) Be honest and specific.   
7) Follow your gut. (If your instinct tells you to mention it, mention it!)
8) Learn from your mistakes. :) 

Doctor's appointments can be overwhelming...I know, I was just there. So be sure to take steps to ensure you're getting the treatment you need, and arming your doctor with the information he/she needs to get it to you! 



Comments

Ashley said…
Thank you for your tips! Umbrella conditions are so tricky to manage, aren't they? Even a lot of work to figure out if something is a side effect! It sounds like lupus is a full-time job for you. (Hug) I'm sorry you didn't have better results. How tough.
Ashley Smith said…
Thank you for this. Im new to this all of this, and Ive just come up with a plan to keep all of my records organized and available. My husband even bought me a planner/journal to keep track of everything, including my daily symptoms. But you tips definitely helps.
Sara Gorman said…
Your husband is right on track, and you are being so good and proactive to use it! Good team work. :) Lupus can feel like a fulltime job, but i work pretty hard to keep it on the sidelines. Always there, but getting as little playing time as possible! Best of luck as you navigate through the beginning of your diagnosis. Any questions - just ask! And pls continue to share. Your comments will hope so many (some who probably have a crisp clean journal at home, just waiting to be cracked open. :)

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