Lupus and Honesty

I want you all to answer the following questions honestly. You’re not hooked up to a lie detector so nobody will know but you. There’s not a single person able to answer these but you. Okay, ready?

  1. Do you ever skip your scheduled medication?
  2. When your doctor asks if you are taking all your medication do you say yes but really mean no?
  3. Are you afraid to tell the doctor the truth?
  4. Do you ever self-medicate?

I have skipped medication. I have lied to the doctor about it. I am afraid to tell them in fear of their judgmental looks. I have taken an extra dose of Furosemide when I felt swollen.

Am I alone in this boat?

Why do we do this? We are only hurting ourselves the doctors know what they are doing. For me, it’s simple. NO I do not do this on a regular occasion. YES it has happened a few times.

Let me explain. I’ve skipped a medication when I accidently fall asleep before I am supposed to take it. YES I have taken an extra dose of my water pill a few times because, honestly, the doctors are not with me when I wake up in the morning. Nobody can tell me how I feel. That being said, I have FULL permission from my doctor to do this, only with my water pill and only if I really feel the need.

My doctors trust me, so I must trust them. This is the hardest relationship I have. Why? I see them once a month, sometimes every two months and they base their judgments on how I look, how I tell them I feel but mostly the blood work. They cannot feel the aches or the uncomfortable tingling of swollen hands in the morning.

I am not advocating that you do this. I’m just telling the truth and trying to figure out why we do this.

What do you all think?

A few side notes:

THANK YOU to everyone who has emailed me regarding an interview and a chance to be on The Lupus Loop! I’ve been responding to everyone but if you haven’t received an email yet, do not worry, you’ll get one within the next few days!

The 2014 Lupus Gala is happening on November 24th at the Museum of Natural History! It is a celebration of breakthroughs in lupus research that are transforming patients’ lives and bringing us closer to a cure. The Gala Honoree, Iris Cantor, is passionate about improving healthcare and furthering medical research that will enhance the quality of life – goals the S.L.E. Lupus Foundation and the Lupus Research Institute deeply share and foster. The event’s Scientific Honoree, Dr. Bahija Jallal, is recognized for helping MedImmune fulfill its commitment to the lupus community as it champions innovation, pioneers scientific discovery and pursues safe and effective new treatments. The S.L.E. Lupus Foundation and the Lupus Research Institute raises millions each year at its annual Life Without Lupus Gala to support innovative novel research that can improve care while advancing towards a cure.

OH, and legendary Tony Bennett is the entertainment!!!


11 thoughts on “Lupus and Honesty

  1. Sue Johnson says:

    I have skipped a few times, but because I forgot to take it. It’s usually weeks apart. I try to be totally honest with my doctor, but sometimes that darn “lupus dog” strikes!

  2. Jeudi Jervis says:

    Yes, I have self medicated including taking extra Lasix. I juggle the prednisone based on how I feel as well. I hate taking the plaquinil and often miss the second dose of the day and I sometimes forget to the take the methotrexate and the folic acid. I hurt. Some days are better than others. I trust my pcp totally with all my care and don’t trust my rheumatologist because I always end up crying at every appointment and he just looks at me and says, “I wish I had an answer for you.” My pcp actually means it when he says it.

  3. Monica says:

    I think it’s funny sometimes when we assume the doctors know what they are doing. I deal with the VA and get conflicting information depending on which doctor I see. They treat me as if the symptoms I describe are in my head because I am not the “classic” case and even when my blood work came back conclusive the rheumatologist still wanted to downplay my diagnosis while still treating me as if I have lupus. I am beyond frustrated!!! I am of the opinion that I cannot trust my doctors and because I do not have any other insurance I am stuck between a rock and a hard place. It gets very depressing.

  4. Evelyn Finney says:

    always take my meds, trust my doctors completely and tell them exactly what is going on even when thoughts are bad and no they do not freak out., never take more than prescribed just got out of the hospital for being overly medicated with two drugs that did not mix prescribed by doctors and taken to the letter., and never self medicate I even stopped drinking alcohool

  5. Helen says:

    i like this site

  6. Miriam Aviles Dobles says:

    I never lie to the doctor because he is the only one who can help me. Never skip my meds because I get worst. I try to do everything he tell me to do.

  7. Christina says:

    Answer ‘No’to questions 1,2 & 3 but I admit to increasing my Prednisolone from 5mg daily to 15 or 20 mg for a week when joint pain and inflamation become unbearable. I have to add that my GP is always kept in the loop.

  8. Karen Cooper says:

    My name is Karen Cooper, I have sle lupus bout 16 years.The last past year it has really been taking a toll on me.New lesions appearing lots if swelling in severe pain daily.Help me please

  9. Peg says:

    I’m always honest with my doc, but I have adjusted meds and mentioned it after-the-fact. Since I reduce dosages, I let it go until my regularly scheduled appt., which runs quarterly. My Rheumy is aware of this, but doesn’t mind.

  10. Sandra says:

    I did go without my meds once found out that I really needed them. Mom’s got wind of this foolish act and balled me out good. Lol Never did that again. So I do take my meds everyday.

  11. Ruth van den Berghe says:

    I did’nt find out I had Lupus until I was pregnant with my first daughter. I had a miscarriage first pregnany. Then my daughter was born at 28 weeks. She nearly died and so did I. It was the first we new I had Lupus. After this pregnancy my daughter was fine. Obviously premature and in hospital for a while. My next pregnancy I had heperin injections each day into my belly. She went to 38 weeks. She was 6lb 8oz. Where as my first daughter was only 860 grams. Both of my daughters are healthy and married. The youngest has a little boy who is 16 months now. My mother now has Lupus. My daughters have not been diagnosed with Lupus.

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