One Patient's Positive Perspectives

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Disconcerting!

Central nervous system lupus in a word?  Disconcerting!  When life gets busy and demands get stressful, CNS lupus can sneak up on a patient and catch her off guard with its bag full of antics and embarrassing tricks.    Over the last few weeks, my life became a little out of whack as my husband and I maneuvered around his knee injury, inability to drive and eventual knee surgery to remove a large blood clot.  Life and schedules became very non-routine and my CNS lupus quietly whispered to get my attention and said, “howdy.”

After more than a year of Benlysta infusions, my CNS lupus has been quieted and subdued more than at any time I can remember in the past several years.  It has been a relief to have my memory and problem-solving parts of my brain working generally well, and I can count on it more often to remember things that were a struggle before.  Well, lately has been an exception.  Being stressed, doing lots of extra driving, working weird hours, concern about my husband’s injury and surgery, and forgetting my medications a few times all contributed to some symptoms that caught me off guard.

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Left turn lane to nowhere

One time on the way back to the house, I started into a left turn lane on a busy street that didn’t head anywhere I needed to go.  My kids that were with me asked, “mom, WHAT are you doing?  WHERE are you going?”  There was no saving face because the turning lane went nowhere.  It was all too obvious I was confused.

Several activities were going on at our church because of a 30th anniversary celebration, and my friend and I were preparing to sing a couple of duets for a church service and a formal dinner.  After meeting one evening to practice several pieces in our growing repertoire, we decided which song to sing what night, and scheduled our next practice a few days out.  The next morning, and for several more that followed, I could not remember which songs or even which music books we had decided on.

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practicing ALL our duets in the car

To thoroughly cover my bases, I popped the ALL the background music CDs for several music books into my car, and for a few days sang along with ALL of our duets as I commuted.  It took me several days of singing and hoping in vain that my memory would clear before I called my dear friend and confessed my massive memory lapse.  My friend, so like a sister, loves and understands the hard issues of my lupus, and in her matter of fact directness, refreshed my memory.  This time, I wrote down dates and times next to the names of the songs in the table of contents of the correct music book.

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Forgot the card… twice!

Twice recently, I went out to pick up some amazing sub sandwiches from our favorite local lunch spot, Jersey MIke’s Deli.  My husband all but cherishes his Mike’s “frequent buyer” rewards card, and admonished me to remember to use the card when I bought our subs.  Not once, but twice, I forgot to pull out the reward card.  No more than ten minutes passed between taking everyone’s sub order and standing in front of the deli counter, but both times the thought was wiped clean away until later.  When he asked me about it, I was frustrated at forgetting.  Short-term memory issues from CNS Lupus?  Of course!

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Confusing days, names & passwords

The most disturbing issue of all was several instances when I was confused and couldn’t figure out what day it was.  Then, later that day, it bothered me greatly when couldn’t remember my friends’ names or my pharmacy log in name and password.  I even had some moments of difficulty articulating clearly while trying to speak.

Things were subtly getting worse a little at a time, when I was suddenly shaken into action in the middle of happy pleasant busy day by a tidal wave of unexplained deep physical sadness.  This overwhelming emotion was so strong it was like an intruder bursting into the room, and I suddenly felt it physically.  It was an unmistakable sign that my CNS lupus had kicked up into more activity.

This physical “depression” I experience sometimes when my CNS lupus becomes active is a great deal like a sensation of woe that floods over and through me.  It seems totally physical, and is completely detached from my thoughts and feelings.   It is a misfit with where I am at in life and in the middle of an otherwise normal day.  My upbeat brain doesn’t match my suddenly “grieving” body.  It feels like my body is intensely sorrowful, while my inner self is perfectly happy and at ease, even cheerful or joy filled.  Over the years I have learned to recognize this urgent organic cry from my brain and body for help.

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diagnosing CNS lupus with treatment

I respond by taking a modest burst of steroids and taper off within a couple of days.  If the physical depression returns, I set a priority appointment with my rheumatologist, who usually ups the steroids by injection or a high long taper off prednisone.  Steroids are the big gun that immediately changes everything.  My rheumatologist says it is possible to diagnose CNS lupus by treating it, because of how quickly it responds to prednisone.

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Comments on: "CNS Lupus and a little sneaky confusion" (4)

  1. Your posts are so helpful to me! I have really bad memory problems as well and the first time it happened and I told my doctor about it she said that this doesn’t happen with Lupus. But I didn’t know what it could be…that is until I started reading your posts. I am so happy that my friend Leslie sent me one of your posts and that’s when I subscribed. At least I know that I’m not going crazy like I first thought!!

    • Brenda:

      I am grateful my experiences can be an encouragement to you, and kudos to Leslie for connecting you. One, caution, be careful not to self-diagnose, yet, if your doctor isn’t knowledgeable about lupus, you should try to get one who is.

      Some symptoms of depression can be truly emotional/psychological because these issues of living with chronic illness are known to be a burden that can be difficult to cope with. Yet, this is normal, too. Feeling miserable and high levels of pain are just plain hard to live with cheerfully! Pain robs our blood endorphin levels, and when they drop emotions sag too. This is a very PHYSICAL response to the ongoing presence of pain. (One thing you can do to counteract this effect is exercise, which naturally raises endorphins, while raising mood and lowering pain.) Endorphins are natural body chemicals that work in our brain similarly to opium based drugs.

      However, depression from CNS lupus attacking the tissues in the emotional seat of the brain can be hard to distinguish from other causes of depression, and can be added on top of other emotional, psychological and even spiritual causes of depression. A big difference is, according to my doctor, how quickly CNS lupus depression changes after steroid treatment. Other causes of depression do not respond to steroids as dramatically.

      Don’t be a afraid to be persistent in communicating what you are experiencing to your doctor, and remember, they are listening to everything you say and running in through the “program” in their head of everything they have learned about illnesses and lupus, trying to see what “computes.” If what you say doesn’t hit on all the right facts THAT THEY KNOW about, they won’t diagnose something outside their knowledge. Also, they are ethically and habitually somewhat limited in diagnosing based on WHAT THEY OBSERVE and not just on what you say. They have a harder time considering what they cannot observe themselves in making a diagnosis.

      Doctors are very human and can only diagnose what they understand. Some are wiser and more knowledgeable than others, so shop for a doctor who knows more about lupus, if necessary. Many rheumatologists with a few hundred patients may only have seen a couple of cases of lupus, and since each case can be vastly different, they may not have ever noted patterns or common issues between patients. You could ask before seeing them how many patients with lupus they have treated.

      You are not going crazy, indeed! If you have depression from your lupus, whatever the cause, it is normal, real and can be treated. My rheumatologist’s outlook on treating CNS depression caused by lupus is, “why you should suffer from that too if we can treat it?” and he has said in the past to me, “what you need right now is a band-aid where it hurts, so let’s use one.” These kind of statements from him are permanently etched in my memory, and are very affirming and an important encouragement to me in my lupus adventures.

      LA

  2. What a timely message for me, so relieved to read this. I’ve been having the depression you described so perfectly..sobbing with feelings of intense grief. I am under intense stress with insomnia added to it &.facing my first holiday season as a single Mom after separating from my 17 yr marriage..I thought my deep physical grief was from all that. Valid reasons but my level of grief doesn’t match what I truly feel, which is peaceful, happy, joyous, free to be me again, not treated solely as a Lupus “victim” not capable of living my life by ex..also forgetful, mix my words up, which is why I haven’t been blogging. After all these years I never knew prednisone treated this, I just waited it out. Thank you for your honesty. You really helped me when I really needed help. God is so good!

    • Jenn:

      Please read my response to Brenda above, and be sure to let your doctor who treats your lupus know what the other stresses are in your life. The key is to communicate and let them know the whole story.

      God is truly good! Without his help, the joy that flows through me deeper than the pain or difficulties of lupus would not be possible. I would not even be able to distinguish CNS lupus caused depression if my life were not infused with the joy of my Savior, Jesus! When life is full of blessings, and I thank God for every waking moment, and then feel physical lupus-caused depression, the contrast is so stark it is unmistakeable. If I had no true joy, I would never notice the difference.

      The joy of the Lord, IS my strength! Neh 8:10

      LA 🙂

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