Friday, December 28, 2012

What makes all this worth it?

I can't sit here and lie and say that this disease is hunky dory, cause its not. I started this blog as a way of therapy for myself. To have a safe forum for me where I can say what I want!! None of my family reads it anyway.
I want to thank each and everyone of you out there that has taken the time to read it. All I ask is please leave a comment, and I will answer each and every single one. Who knows this could get bigger than I ever imagined. We need to reach people and have people made aware how devastating this illness is.
I spent 8 hours in the ER yesterday throwing up over a dozen times and I'm here this morning reaching out to you. If I can help I will and if I can't, at least I know I tried. 
So all I ask is please pass this blog around, it might make a difference!

8 comments:

  1. I too have CVS and know what its like to spend hours in the ER. I will share this on my facebook page :)
    https://www.facebook.com/CyclicVomitingSyndromeSufferers

    ReplyDelete
    Replies
    1. Have you tried hypnosis or acupuncture therapy?

      Delete
    2. Hi Melissa,
      Thanks for taking the time to read my blog. I am just truly and deeply sorry it has taken me this long to get back to you. Needless to say it is no excuse. I've been in a slump lately and just starting to emerge back into what other people call life. I have spent more time in the hospital in the last six months than I ever had since all this stared about four years ago. As a matter of fact I spent eight hours in the ER yesterday and this doctor says to me ok we are gonna treat you, give you meds, amd then send you home, and we are not admitting you. I looked at him and said, I don't want to be admitted either, I just want you guys to make me feel better! Arrogant ass he was. He walked out of the room and I cried.

      Delete
  2. I have CVS, although I do not have as frequent episodes. Mine are only 1-3x a year but I end up in the hospital on observation. I feel like mine is gradually getting worse. What IV medicine works for you? Last time I think we figured out IV Compazine and benedryl.

    ReplyDelete
    Replies
    1. Hi Kerri,
      Again sorry it took so long for the reply. I am sorry to hear you have this awful puke monster disease as I call it sometimes. IV meds that work for me are Zofran 8mg, Ativan 1mg, and Dilaudid 1mg, for pain.

      Delete
  3. My daughter may have this. Part of me wants a diagnosis but just not this one. I just found your blog. I hope you are finding some periods of respite. My heart is with you. Sincerely, judi

    ReplyDelete
    Replies
    1. Dear Judi,
      I know you may feel at a loss, like you are at your wits end, but getting the diagnosis is going to be the first step in the healing process. Until you figure out what it is you are always going to be worrying and wondering what it is. CVS is not a pretty disorder but I know when getting on the right cocktail of meds, it can make all the difference and improve your quality of life.
      For me, respite comes in drinks and drabs. I take it one day at a time, and that's all anyone suffering with this disease can do.

      Linda

      Delete
    2. Summer Armstead Summer.ss@gmail.comAugust 9, 2017 at 9:19 PM

      Linda - I am in California dealing now for 8 years thinking I've been some sort of medical freak. Just recently diagnosed with CVS my last episode yesterday lasting 4 days down 6 lbs. that's the first episode in a year. I have a 4 year old and I struggle with depression with each episode and depression I between. Thoughts of suicide often play out during these episodes in my mind and these Damn doctors I feel don't understand. I struggle with why me, what am I doing wrong, what if I hadn't ate that or what if my baby get this, how do you get through this everyday? I'm at my wits end literally- Summer

      Delete