Friday, I was tlelainia08idying up in my studio and I smashed a vintage candy jar. It slipped right out of my hands. My hands are failing me right now. I am struggling, even typing this. As an artist, I can’t tell you how scary that feels. I had 3 days of IV steroids last week and I feel shattered, just like that candy jar.

Right now, my throat is raw from acid reflux, which I get every time I have steroids. I have doubled up on the medication that’s supposed to protect my stomach, but once again, it’s just not enough. My stomach is raw. I can’t eat or drink without causing pain. I am so thirsty, but drinking just makes things worse. I feel like I have strep throat and it hurts to talk. My vision has been blurry off and on and I’ve had some horrendous headaches.

Yesterday, I took my dog to his annual vet appointment. When we came home I decided to lie down for a nap…I woke up 5 ½ hours later. The whole day just blew by. I was up for a couple hours (long enough to check in with my husband who’d been at work all day) and then crawled back into bed. I lost track of how many hours I slept.

Sometimes the best I can do is survival mode. It’s not by choice and it’s something I am still working on adjusting to. I’m sharing the truth of this moment (without wanting to sugar coat it) so if you’re living with NMO and struggling right now, you’ll know you’re not alone. I’m right there in the trenches with you, fighting for all I’m worth. We may be bruised and battered, but I promise you, we are unbowed.






Aug 2014
POSTED BY Lelainia Lloyd

Everyday life, NMO



  1. Vanessa

    I get acid reflux from steroids too. I drink chocolate milk to help because I hate pills. I always find drugs cause me more issues than good.Hope you feel better soon.

    Comment by Vanessa on August 14, 2014 at 1:35 am

  2. Lelainia Lloyd

    Hi Vanessa,
    Isn’t that just THE WORST? Really hard on the stomach and throat. I also drink milk with syrup in it-there’s one Nestle makes here in Canada that is a chocolate coffee syrup that I add to my milk because as you know, when you’re on steroids, everything tastes bad-especially milk. I am with you about side effects-I have alot of serious drug allergies and I seem to be really sensitive to alot of drugs as well. Just our luck that we’d get NMO and have to be having so much treatment, eh? Hang in there-clearly you’re not alone!

    Comment by Lelainia Lloyd on August 14, 2014 at 1:23 pm

  3. sheryl

    recently diagnosed thankful for this website feeling blessed

    Comment by sheryl on August 14, 2014 at 4:10 pm

  4. Lelainia Lloyd

    Hi Sheryl,
    I am relieved you know what you’re dealing with and also sorry you’ve been diagnosed with NMO. Glad you found us and that you’re finding our blog helpful. There is strength in numbers and while we may be rare, the NMO community is a tight knit bunch. Here’s hoping you stay as healthy as possible for as long as possible.

    Comment by Lelainia Lloyd on August 14, 2014 at 4:21 pm

  5. Jeanette

    I’ll pray for you Lelainia. May the Lord give you stomach relief!

    Comment by Jeanette on August 16, 2014 at 9:08 am

  6. David

    I feel like this disease is a curse…and a blessing. I was diagnosed at the end of March and have been struggling to figure out what my future will look like. I have made a mostly full recovery, but there is always the “how is tomorrow going to treat me” in the back of my mind. I hope the worst is behind me (that first episode had me paralyzed from the armpits down for two weeks, then spent two weeks in physical therapy trying to relearn how to walk), but I know this is a relapsing disease that could strike me down again at any time.

    So now, how is it a blessing? Spending so much time unable to care for myself taught me how to ask for help…and accept help. I also learned to slow down and appreciate every moment of every day and every ability I still have. I get frustrated not being able to jump as high, run as fast, or…have my body and muscles respond the way they used to; but then I remember how it was not being able to move at all and that walking is a gift. Everything I have is a gift!

    I am interested in learning more from other people with this disease and how it affects them still. I feel lucky in my current ability and hope to not revisit where I was. Thank you for your blog and the information about this rare disease that helps people like me find comfort in our “new normal”. Really hope you are feeling better and able to return, once again, to life.

    Comment by David on August 20, 2014 at 4:09 am

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