January 27, 2012

Jenny's Notebook: Directions and Destinations

Jenny's Notebook is back and better than ever for 2012! Check our her latest post about taking control and managing her lupus to live the best life possible, despite its challenges.

How truthful are you about the way you manage your lupus? I’m going to ask you a few questions; let’s see how you do—and be honest.
Have you ever skipped taking your meds? Once or twice? For a week? For longer?

Have you ever spent the whole day in the sun without any sunblock or sun-protective clothing?

Have you ever insisted on working late every night for weeks on end because no one else could possibly finish that project but you?

Truth is…
Did you answer “Yes’, to any of these? If so, you’re not alone. I confess that I’m guilty of each and every one.

And if your doctor asked you those same questions, how would you answer?

You might first deny everything—that will work until the lab test results come in. You might admit to one or two, like no sunblock, or a few extra hours on the job—you’d probably get away with that for awhile.

But you should know that anyone with lupus answering ‘yes’ to questions like these has just become the doctor’s worst nightmare: the noncompliant patient.

Every doctor dreads this patient because those noncompliant actions have consequences. Maybe it was a mild flare that knocked us off our feet for a few days and disrupted our plans. But maybe it was a severe flare—one that put us in the hospital for a few weeks and scared our loved ones half to death.

An article in the Fall 2008 issue of Lupus Now discussed why people are non-compliant with their prescribed medicines: adverse side effects, medication costs, inadequate insurance coverage. Research shows that clinical depression can also cause noncompliance. Forgetfulness, too, plays a role, maybe due to lupus “fog,” maybe because of internal disobedience—in other words: denial.

We’re only human
It’s human nature, I think, to want to go back to how we used to be—our former self, “LBL: Life Before Lupus.”

In our beautiful Life Before Lupus, we could do anything we wanted. We had plans for recreation, for work, for family. We had dreams and goals. Being sick had no place in this life. And having a disease that would require our attention forever? The possibility simply never occurred to most of us.

Then lupus happened. And that beautiful life became “LWL: Life With Lupus.”

If we’re not careful, that dream—the yearning for Life Before Lupus, can turn into a nightmare. By disrupting our doctors’ efforts to keep our lupus under control, we become our own enemy. We countermand our own best chance of getting better.

It’s taken some 18 years, but I’ve come to see that following all my doctors’ directions is like following a road map. I no longer view my Life With Lupus as a dark and dangerous journey. Instead I understand that my true destination is to live the best life possible, despite the many challenges of lupus.

And when I get lost, or have a flat tire, or the car hood falls on my head (good thing I have a thick skull!), that’s when I call on my personal road crew for support: family, friends, co-workers, boyfriend, and yes—my doctors.

So today I pledge to take my pills, remember the sunblock, forgive the doctor for making me wait, and smile at the lab tech drawing my blood. Because no matter how many wrong turns I have taken, I want my trip to last a long time!

Won’t you join me?

I remain,
Your faithful correspondent and traveler,


Anonymous said...

This is sooo true.That person that never complains is me!I need to start talking more about my problems and deal with it than ignore it cause i'd rather live than die.

Anonymous said...

Does anyone out there have reoccuring nausea and IBS? does anyone find that after a stressfull situation or a serious injury that symptoms appear that wern't there before???

Any responces would be helpful!

Thank you and have a good day!


Anonymous said...

I have IBS and have had it for years before being newly diagnosed with LUPUS in june of 11. However, I dont have as many issues with IBS now.

Anonymous said...

Yes I do Sharon...I have IBS and nausea...My doc had me to start taking probiotic supplement pills everyday and it has helped a bunch!

Lupus Adventurer said...

Jenny: Great questions to keep us honest with ourselves and our doctors in our daily battle for health! Thanks.

Anonymous said...

sooooo true. i really do try my hardest at being compliant, but i have failed when it comes to my medication, or taking on too much instead of saying "no" or "i need help." i guess i'm stubborn that way.....

Anonymous said...

My downfall is that I don't really have much support from family and friends and I feel like I've became a burden to them because of my lupus :(

Anonymous said...

I HAVE had lupus for 13 yrs. i don't like to complain but i feel like screaming. the steroids have blown my weight to over 500lbs, i rarely want to eat because of the IBS, i am on oxygen and i can barely stand. i know God has a plan for my life, but i just needed to vent.

Neka said...

Wow. THe "lupus fog", just thought that it was just me. I have that often of being in the middle of talking and trying to do something and just forget. And yes to the nausea thing. Especially if i have been upset or just getting upset over something. The next day i feel like a truck has ran me over and came back for seconds. Anyone else have this happen?

Anonymous said...

I have had lupus for 23 years and thank you I now know that I am not alone when it comes to medication and pushing myself to the limit. I am working on it cutting down on the things I do but still struggling with taking medication. Pray for me. I just don't like the side effects

Anonymous said...

I was diagnosed 5 years ago when I had the first flare up and have not really had another of any consequence since two weeks ago. How often can one expect a flare?
I too now have occasional IBS possibly caused by the medication.

Anonymous said...

Your so true! I realize it's a team effort and I am very important part of it. Always try to stay positive even when I'm down