One Patient's Positive Perspectives

Freeway after work

Driving down the freeway after work, my cell phone began ringing.  It was my wife calling to tell me she was stopping at the grocery store on her way home from work to pick up milk and bread.  Did I need anything?  I remembered we were running low on Diet Coke, and asked her to pick some more up for me, along with some salsa and tortilla chips.  I got home and relaxed in the office, and logged onto my computer to play World of Warcraft for awhile while I waited for my wife to get home.

Later, she called

About a half-hour later, she called, and didn’t sound like herself.  She seemed disoriented and confused.  She began talking, “Honey, I am in the store and I can’t figure out what to do next.  I have walked around with my cart, and have some stuff, but all of a sudden, my head feels really funny, and I can’t think straight about what to do next.”  I asked her, “What’s wrong, are you okay?  Tell me what’s going on.”

As she began gently crying over the phone, she explained, “I am very confused.  I can’t figure out what to do, I am fuzzy headed and am afraid.  My mind is really foggy and disconnected and I can’t think what to do next.”  I asked her, “What do you need me to do, how can I help you?”  Her response, through her sobbing was, ” Can you come get me?  I really need help.  It feels like that morning when I couldn’t figure out how to get ready for work.  I think its my CNS lupus, and just I don’t know what to do.  I am scared.”

She needed me.

I told her to find a place near the front of the store to sit down and wait for me.  I got into my car, worrying about what was happening to her lupus.  Recently, it had attacked her central nervous system and gave her problems with memory, mental cloudiness and it was making it hard for her to handle her responsibilities as the manager of government law department.  I hoped the new chemotherapy drugs would help her lupus quiet down soon, and pondered my concerns for her as I drove the freeway across town toward the store where she was waiting.  Getting this kind of call from her really shook me up, it was so unlike the normal “in charge” gal I married.

When I got there, I put my arms around her and hugged her close for a couple of minutes.  I wiped the tears away from her upturned face, and stroked her cheek, telling her, “everything will be alright,” as she sighed in my arms and leaned her head into my chest.  “Why don’t you call your rheumatologist in the morning, and see if he can see you tomorrow?  You need to let him know what happened.  Right now, let’s just get  you home, okay?”

Grilled cheese and soup

With my arm around her shoulder tightly, we walked out to my jeep.  In a few minutes, we got home, and I had her sit down in the living room to rest.  I scurried us up a simple supper of toasted cheese sandwiches and soup, and after a couple more hours she seemed mostly back to her normal self, but still was very upset about the experience.

I took my son back to the store with me later to go get her car.  We chatted during the drive over about how these CNS problems with her lupus made it really hard to know what to do for her.  I felt so helpless, and just wished there was more I could do to keep these type of symptoms from happening to her.  My son and I agreed there was not much we could do but pray for her and love her, and trust the Lord and her doctor to handle what we couldn’t.

How much I hoped her new chemotherapy medications would get her lupus to quiet down.  In time, she eventually stopped having these type of confusing episodes, and in a few months her new drug therapies made a great difference in resuming her normal activities and self-confidence.

I realized how fragile at times she was because of her lupus, and how precious both of our lives and health were.

From the eyes of
Lupus Adventurer’s Husband


Comments on: "CNS lupus and a disturbing call from my wife" (2)

  1. Did he actually write this post?? just curious…

    • lupusadventurer said:

      BW: Great question… No, but it was based on our conversations about the incident, and several similar ones. It was a real challenge to try to put this in the third person perspective, which was the health writer’s challenge for this day. This one really stretched me! LA

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