Remembering … or Not

32 Replies

I drove in a circle in our town tonight. The kids in the back of the car, obviously chatting with each other.

I did three u-turns, and twice turned around to go home.

I couldn’t remember where I was going. Or why we were out.

This past weekend my husband headed to a local store for a family Christmas gift purchase.

Upon waking, he told me of his plans and twenty minutes later I asked him why he was getting showered and dressed.

After his shower, as he got on his shoes to go, I asked where he was going. Why was my husband leaving?

As he stood by the door, keys in hand, I looked at him blankly and said ‘wait…where are you going?’

I won’t be driving much unless necessary now. And I have new notepads, pens, and post-it notes to help me remember.

The episodes are short, they are fleeting, and allegedly they will get better. Or worse. We’re not sure.

I just know that I’m crying. I’m scared. And I’ve had enough.

32 thoughts on “Remembering … or Not”

  4. Dr. Pants

    As I read this, I became so sad that someone who I have never actually met, but that I feel I’ve gotten to know just a little, and who I have grown to care about, was going through such a thing. I don’t know what this will mean to you, but you are definitely in my prayers.

    David

  7. Jen Myronuk

    Sending all of the positive energy I have your way from Boulder tonight… Am also researching everything I can on anti-inflammatory treatments (both traditional/holistic). If I can find anything useful, will pass along (although, am certain you’ve got a PhD in this subject by now). I know you’ll have many days of low-stress, nourishing family time ahead to give your body/mind new strength to re-energize. Keep being strong — you’re an amazing woman. xoxo

  8. Dawn

    I’m sorry, Erin. Wish I had something witty or comforting to say, but I’m at the bottom of the barrel too. *hugs* is the best I can offer.

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  15. Aprille

    My heart aches.

    Another thing that might help is taking pictures. In the UK they’re using wearable cameras to help people whose memories have been obliterated by encephalitis. Research studies have shown that in alzheimer’s patients photos really help them remember recent events & stay in the present a bit more. So take tons of pics – we like to see them anyway. And best wishes. Really, truly.

  18. VDog

    I’m so sorry honey.

    Wish we were back to karaoke-ing with strange curbside vomiting episodes. You know, without the eventual lupus dx.

    xoxo

  20. injaynesworld

    Go ahead and cry. Rage with raised fists and scream to the Heavens. This sucks in every way and none of it is fair. Go ahead. It’s not a sign of weakness at all It’s like taking a big emotional dump. You’ll feel better and God can take it.

    I don’t know why bad shit happens to good people and I’m very sorry so much of it is happening to such a kind and loving soul. Big hugs.

  23. nothinbetter2do

    Hi Erin,

    My heart goes out to you. I just read that your memory loss is part of your condition. It must be terrifying and frustrating at the same time.

    Have you heard about this clinical trial? “Bruce T. Volpe, M.D., professor of neurology and neuroscience at Weill Cornell Medical College in New York, are testing a drug that may block the antibodies from killing brain cells. For now, the drug is being tested only on mice, but the therapy may one day help lupus patients.” This was 5 years ago.
    http://www.lupus.org/webmodules/webarticlesnet/templates/new_magazineempty.aspx?articleid=2975&zoneid=225

    RSS Lupus Feed:
    http://www.medicalnewstoday.com/rss/lupus.

    You’re in our prayers…Laura

    ====================================

    For those of you who would like to know more about Lupus:
    This Is Lupus
    http://www.youtube.com/watch?v=BI4z30nfv6k&feature=player_embedded#!

  25. Stella

    Oh hun, that sucks! Post-it notes help, and make sure you have a calendar with everything written on it somewhere you can’t miss seeing it everyday. Electronic ones are only fine if you remember to look at it. Get everyone to pop reminders on it for you too. Good luck and I pray this is a temporary blip for you.

  26. nothinbetter2do

    Hi Erin,

    My heart goes out to you. It must be terrifying and frustrating at the same time. Didn’t know if you had heard about this clinical trial or not: Bruce T. Volpe, M.D., professor of neurology and neuroscience at Weill Cornell Medical College in New York, are testing a drug that may block the antibodies from killing brain cells. For now, the drug is being tested only on mice, but the therapy may one day help lupus patients. (This was back in 2005.)

    Link: http://www.lupus.org/webmodules/webarticlesnet/templates/new_magazineempty.aspx?articleid=2975&zoneid=225

    You’re in our prayers ~Laura : )

  28. Jaelithe

    My mother has struggled for the past 15 or so years with memory loss associated with severe sleep apnea and fibromyalgia. So I have seen this up close and there is something important I need to tell you: my mother is still HERSELF. She is still creative. She is still more than capable of intelligent conversation. She is still an excellent writer. Her working memory problems are a pain in the ass and cause all sorts of practical issues in her daily life but they have not diminished her as a person.

    You will also still be Erin through this. Even if you put your housekeys in the freezer and the milk in a cabinet. Even if you forget what your husband told you five minutes ago. Some of your memories may be erased by this damned illness but YOU will not be.

    Please, please, do not get angry at yourself or think less of yourself because you forget things. You are not losing your memory — it is being stolen from you. I hope the doctors are right, and this will get better soon.
    .-= Jaelithe´s last blog ..So That Happened =-.

  32. geekbabe

    Erin, I wish I could wave a magic wand over you & make this illness go away, unfortunately all I can do is to send you positive force from Boston!

    I will also offer the observation that being able to tell select people “Jesus, I don’t remember promising you that” might actually be a bit of a blessing, humor, sometimes makes the unbearable a little easier, in my experience at any rate
    .-= geekbabe´s last blog ..Joyous Yule! Winter Solstice =-.

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