//Forever changed 

Forever changed 

By |2018-08-27T21:35:20-06:00November 9th, 2017|2017|12 Comments

About the Author:

Author of Happily Ever After - My Journey with Guillain-Barre Syndrome and How I Got My Life Back.


  1. Mary Elizabeth Roarke September 25, 2018 at 11:50am09 - Reply

    Hi, I understand your frustrations dealing with STD. I am a nurse myself and had only seen GBS once in my career, many professionals never do. I thinking seeing it and reading about it in a textbook ( as you mentioned) leaves a different impression. I was diagnosed in March 2018 and have tried to find literature which describes the post- acute phase and have been unsuccessful. Can you help? You mentioned above the residual symptoms and I am interested in reading more about it. My residual is fatigue, which comes in waves, sometimes so exhausting that I have to nap for several hours. I never know from one day to the next. Thanks in advance for any insights you can provide!

  2. Jackie Rheinheimer September 3, 2018 at 11:50pm09 - Reply

    I hope you keep it going on holly .I have the same. Looks from people when ask what’s wrong with me . I know.

  3. Shannon Green August 29, 2018 at 11:50am08 - Reply

    I was denied first time but I appealed and was granted disability the second time but I also have other health conditions like conversion disorder which I got after GBS.

  4. Austin Noel August 27, 2018 at 11:50pm08 - Reply

    You Rock Hollyyy !!! #Strength

  5. Carly August 27, 2018 at 11:50pm08 - Reply

    Although I am sorry you are going through this, it’s so nice to have someone who understands what I have gone through and what I am still going through. I was denied transfer to acute rehab five times before my insurance company approved it. They told my mom that I didn’t have enough of a medical need. I was on a ventilator and a feeding tube at the time. I am currently fighting an eye surgeon who fixed my drooping eyelid post GBS because he never submitted a claim to my insurance company, because he said the surgery was cosmetic and not medically necessary (This doctor has a contract with my insurance company and is contractually obligated to submit all claims to the insurance company who should be the ones to determine medical necessity). I am only about a year and a half post diagnosis, and I’m already tired of battling doctors and insurance companies. Most people do not understand life post GBS. I’m so glad that you do.

  6. Michele Deaton March 22, 2018 at 11:50am03 - Reply

    Sorry for the spelling. I was typing this up pretty fast between classes!

    • Barbara Jarvis August 28, 2018 at 11:50am08 - Reply

      So sorry to hear of your denial.. Unlike u I was already on disability when I got struck with GBS.. I totally understand what your saying about residual symptoms..I have been getting them alot..I have other issues as well health wise so it makes some days unbearable..I really hope you appeal this decision and get what you righteously deserve.. Isnt this why we pay for insurance??

    • Lynn October 24, 2018 at 11:50pm10 - Reply

      My mother got this disease back in 1989. She was very sick before we were told what she had. Drs didnt know what was wrong with her. She went into the hospital walking. Not walking coming home. We found out what she had when she went into a coma and they did a spinal tap. She never really got better. She passed away in 1996. Then my dad got it in 2000. The drs said they both got it from the flu shot they received when we were in Germany in the 80’s

      • hollyaftergbs December 2, 2018 at 11:50pm12

        I am so sorry about your loss. That is so crazy they both had it 🙁

  7. Michele Deaton March 22, 2018 at 11:50am03 - Reply

    I am so glad I stumbled across your page! I have had GBS also. Mine was not as server as yours. I never had to be hospitalized. Mine was explained as having bilateral GBS, it affected my left side more than my right. I also have residuals that are so hard to explain, but you have describe it perfectly. I have been fighting GBS since July 10, 2011. It seems the more I try to exercise the more flares I have. Thank you for your blog! I completely understand the pain and frustration with GBS. The best of wishes for you!

    • Melissa Bertolino August 28, 2018 at 11:50am08 - Reply

      Hello Holly, You have my permission to add me to your list of names for dealing with GBS. If I can help in any way let me know. I will speak up. I will educate. I will share. I too get the blank stares from PT’s and physicians when I bring it up. One PT student said to me, “oh you had muscle weakness with GBS?” That is what her textbook told her. She didn’t have a clue. Anyone could ask my husband as well about what I went through. He knows almost as well as I do. Keep fighting and if you need a supporter…you just contact me.

      • hollyaftergbs December 2, 2018 at 11:50pm12

        Thank you Melissa! Where do you live ?

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