Lupus strategies for dealing with the medical waiting game.

Based upon Wednesday's post and the agony of the medical waiting game - below are some tips that I've used over and over again throughout the years. I've used them separately, and in combination with one another. They've worked to ward off anxiety caused by hair loss, angioedema (swellings), hospital stays, new prescriptions, plus the aforementioned wait involved with test results, doctor's calls, and treatment plans. I can be my worst enemy when it comes to waiting. I've decided I can either wait impatiently (causing stress, anxiety, and possible increased disease activity), or I can calmly await the answers to come. Referencing Monday's post, I think we all know which path Darwin would take!

Tips for waiting it out:  

Will yourself not to think about it - Every time you find your mind wandering to the subject, tell yourself you're not allowed to dwell on it, and move on. You can even make a pact with yourself, or set up a reward system (think M&M's every time you skip a damaging Google search), if your brain is being stingy. This strategy works for physical symptoms, too. When I'm suffering from a bout of angioedema, or random swelling, particularly in my lips or face, I have a tendency to check the mirror every five minutes. And I swear, the energy I expend and the stress I cause every time I see the swolleness in the mirror exacerbates the problem. So when my lips swell, I swear off the mirror. I check it once, to confirm that it's swelling, but after that, I force myself to wait an hour, if not more before checking it again. 

Same goes for awaiting those test results. If you're expecting a call or an email,  force yourself not to check your phone every five minutes.  Taking a nap, going for a walk, or distracting yourself can also work. You may feel like you're going to need a day's worth of distractions. But before long, your mind will have moved on. 

Reason it out, and then let it go - When it comes to the medical waiting game, usually it's one of two outcomes. You either have high cholesterol, or you don't. Your antibodies/platelet counts/SED rate have either improved, or they haven't. You either have "x", or you don't. So I find that instead of torturing myself by randomly and non-linearly thinking of all the consequences and subsequent courses of action, I actually take a few moments to map out, on paper, the options. Take an ultrasound I had a few years ago. During a physical exam, my doctor detected my suprisingly strong heartbeat in my stomach. He ordered an ultrasound, to rule out a bulging aorta (yuck!).  As I awaited the results, I wrote out the possible scenarios. 

Possibility A) Aorta is bulging and I have an aneurysm. If so, we’d follow procedures to take care of it. My doctor was on it. I was catching it as early as I could.There was nothing more to be done at this point.

Possibility B) Everything is normal, and my aorta is just abnormally close to abdominal wall (which was, in fact, the case). Felt my heartbeat in my stomach for years, not just quite so strong. Probably just slightly stronger than in the past, and odds are in my favor.

Once I had the realistic options on paper, I put the paper aside, and went on with my life. I had documented the possibilities, and there was nothing more to be done. 

Journal about it - This is another great way to get worries and concerns out of your brain and onto paper. Personally, once I write about an issue, I reach a certain level of contentedness with it. It's no longer swirling around in my brain, popping up at random and inopportune times. Once it's in black and white, I can almost dismiss it. Almost...

Do all you can for one day, and that's enough -  I remember some sage advice from my dad years ago. It was the first summer after my freshman year of college, and I was trying to lose the dreaded Freshman 15 (which was more like 25). I had started jogging several times a week, but after a few weeks, I wasn't seeing results. My dad sensed my frustration, and said, "Look. Have you done everything you can do about it today? ("Yes. I already ran.")  If so, that's all you can do for today. You can't ask yourself for anything more than that." 

This advice really is so true. As you're waiting, if you're following doctor's orders, maintaining healthy lifestyle choices, and avoiding the "cart before the horse" trap, you really can't expect anything more of yourself. Life takes turns, and the only thing we can do is turn with it. If you allow yourself to just roll with it one day,  I think you set yourself to roll with it the next.

That said, I hope you get your ball rolling today! 

Comments

Essence said…
Thanks I really needed to read this. The last few days I've been stressing myself out over appointments that have yet to happen.
Hannah said…
I really struggle a lot with waiting. I have lupus nephritis so I had to go back on prednisone on October 2013, then I started getting high fevers everyday (stress, my dad passing away, depression, etc.) so I went on 80 mg. I'm now on 10 mg. I could've been off of it but since tapering to 20 mg the protein would get high again. On top of that, I am severely depressed because I can't drive due to seizures, and I'm in school so it's so depressing to see my classmates get jobs and internships while I'm not. I got the ok with my doctor to drive but I might have to take the driving test because it's been the 4th seizure and the form asked "Do you recommend this patient to take the test?" and she said "yes:
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Sara Gorman said…
Thanks for commenting - glad the post was well-timed, and best of luck.
Sara Gorman said…
Waiting can be so very challenging! Good news is that your body has handled a good amount of tapering off prednisone - congrats on that front! Every 10 mg is 10mg closer! And on the driving test - good news there is that you passed it once. :) I bet u can do it again. Of course, do what's best for you. When you're ready, you'll know it! Thanks so much for sharing.
Sara Gorman said…
Waiting can be so very challenging! Good news is that your body has handled a good amount of tapering off prednisone - congrats on that front! Every 10 mg is 10mg closer! And on the driving test - good news there is that you passed it once. :) I bet u can do it again. Of course, do what's best for you. When you're ready, you'll know it! Thanks so much for sharing.

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