Thursday, April 14, 2011

The Bad News, the Good News and a Lesson

My neurologist was very concerned that I was losing ground and actually getting worse when he saw me the end of last month,  so he ordered the spinal tap that was done last Tuesday.   The tests on the spinal fluid confirmed that the Guillain-Barre syndrome (GBS) is chronic, and again ruled out other bad things - good news.    I can hardly walk now and the deterioration in my hands and fingers is making it more difficult to type and do things using my hands.

I wish I could start this week, but beginning Monday for four hours a day, five days in a row I will  be hooked up to intravenous high dose immunoglobin therapy.    I sure have had my share of misery these past several months.  This has a lot of side effects so it isn't going to be fun or easy, but I hope this treatment enables me to finally kick this thing.

The Lesson:  Another example of the callous behavior I've endured since I came down with all this

Just what kind of person makes fun of, and actually celebrates the health problems of someone who extended their house and hospitality to them?

This e-mail message came from a person I met and befriended a few years ago on an internet sewing board.  It was sent soon after the onset of the baffling, undiagnosed neurological problems that I described online.   At the time I was in very bad shape.  Receiving this shocked me since I had not heard from that person in almost a year.   I discussed it with my family,  and a week later I responded with some pointed questions.  Was it meant to be sent to me, or did they accidentally add my name to the reply list?   Either way,  I told her that to say things like this about me was cruel and insensitive.   Given that the individual obviously never had any class, I never got a response, apology -  nothing.   I'm not sure of the identity of others involved in this messaging,  but I have a pretty good idea.

From:     xxxxx
    Subject:     i bad
    Date:     September 7, 2010 10:01:55 PM EDT
    To:     Terri K

does this mean she not able  to run around  with that damn hand heald vacum cleaner when people are trying to watch  TV  this could be a good thing

A couple of months later the same individual merrily joined the party to disparage me, and trash my reputation on the same internet sewing (?) board.   The bullies had lots of "fun" with that.    Any excuse is a good excuse.    Doesn't take much to ignite narcissistic bullies, no matter their age, especially in an online forum.

The lesson and a word of caution -- Don't think you ever really "know" people who post on internet boards or social media.  Many of the attention seekers who play in those internet playgrounds have behavioral issues, and and are NOT always people you want to be "friends" with.   Think twice about inviting them into your house or life, no matter how witty, intellectual, caring or sweet an image they project online.   And if you think you have better friends on the internet than "in real life" - Wow !  you're definitely spending too much time online and need to get a real life.


  1. I hope the IV therapy works. Best wishes!

  2. Sorry you were hurt like that!
    Happened to me this year when my sister in law of 40 plus years had something mean to say about me- and it got forwarded to me by mistake!
    Hope your iv therapy works for you!

  3. Terri,

    I am just so sorry for this hurt, I don't know what to say. You are a lovely, gracious, and talented lady. Please forget all about this shallow miscreant. Forever.

    Best wishes on your treatment. We hope to see you feeling perky again soon!


  4. If you were a retiring mouse of a person maybe you could avoid such cruelty but that would deny the rest of us the joy of seeing your creations. You put yourself out there with generosity, creative ideas and high standards, inspiring most of us. I'm astonished some would respond the way you've experienced. I wish you good cheer and courage.

    Carol in Denver

  5. I've lit a candle and have 4 pairs of fingers crossed that your IV treatment will be a breakthrough for you in this health battle.

    It was shameful what was posted about and to you on that sewing-related message board. I am truly sorry it happened.

  6. sorry about both the cruel comments and the health news. I am holding you in my thoughts and hoping the IV treatment is a success.


  7. Sending you best wishes for a good outcome from the iv therapy. And what a good warning about the internet illusions that sometimes pass as friendships. I'm never a frequent poster and you just described why. Life is challneging enough without having to figure out email respnses to rudeness. Hope you feel better soon!

  8. Terri
    I keep you in my prayers and hope for your recovery. As to the other, I can only commiserate having been subjected to similar behavior. The cruelty and thoughtlessness of others is distressing. My heart goes out to you.

  9. I do hope that this new treatment will be successful. Not being able to do the things you love is so disheartening. Re: your comment about "knowing" people is so true. Somtimes the things I see/read remind me so much of Jr. High days. I try to shrug it off and consider the source.

  10. Terri, I am appalled at the email you received. As a fellow Southern lady, I know there is no cruder display of lack of manners than to insult someone who has extended hospitality to you in their home. Thanks for the warning about internet "friends." Your sewing skills are awesome but it is your talent for design that inspires me. Thank you for sharing that and may God bless you and your family as you fight this health battle, which I am sure you will win.

  11. Wow, sorry to hear of your health concerns. That email was mean and uncalled for. But it shows who to cut ties with and release from your life. Best wishes for your renewed health.

  12. Terri,
    You are in my thoughts as you face this difficulty. You are clearly an inspiration to many of us. Thank you.

    Wishing all good things coming your way.


  13. Terri, I hope the IV therapy helps. It is unfortunate that you were further hurt by internet "friends."

    I will keep you in my thoughts that all goes well and you get back your health. I enjoy your writing on fashion/style/sewing. As always your clothes are an inspiration to all of us.

  14. Terri, for some time I have been an admirer of your style and sewing talents: now, how much more even, your personal fortitude as you cope with the protracted GBS and extended family tragedy. I trust there is comfort for you in knowing that "cyber-support" is flowing from another corner of the world.

  15. Sorry, I haven't done this before, and didn't identify myself with my post! - it is Mandy, in South Africa.