This is my story and I'm sticking to it!

I am starting this blog to help me remember how bad I was and how good I am now. After reading posts for a year I realize how lucky I am, it could have been so much worse. I am so thankful.

First, let me say that I have smoked for over 40 years. I still smoke. I am struggling with quitting completely. I did not smoke for 9 months of the last 11 months aside from the problems that go with smoking,(bronchitis etc) I have never been a sickly person. I have never taken any medications regularly. I didn't even take aspirin very often.

  • On 10/13/13, I was home, on my last day of vacation. I went to a clinic because my chest hurt and I was having trouble breathing.They said I had pleurisy and gave me steroids. I had to go to work so, I drove 600 miles to my next job feeling lousy (I travel with a 5th wheel camper as my jobs last @5 months)
  • On 10/14/13, I went to the ER because I felt dizzy and was still having pain and trouble breathing. I was told I had bronchitis. They gave me antibiotics.
  • On 10/15/13, I went again to the ER this time the pain was so great I begged to be knocked out. They gave me a shot of morphine to shut me up and stop my crying. They sent me home again, by myself.
  • On 10/16/13, I had a friend fly up to drive me, my dog and my rig back home. Upon arrival, I called an ambulance as I could no longer stand up and it felt like a heart attack. they addmitted me.
  • On 10/19/13, after countless blood tests, MRI's, and X-rays, they still did not know what was wrong. I paralyzed up to my ribcage. I asked for a Neurological consult and he immediately did a lumbar puncture (right in my bed and THAT was scary!) within hours he diagnosed me and started the first IVIG treatment.
  • Within the 5 days I began to get better and transferred to inpatient physical therapy.
  • On 11/20/13 I was released. I had no insurance so I had no further therapy. I had to do it on my own.
  • On 1/2/14 I went back to work. I had no choice. I have to work to pay bills and eat. Not to mention, I had racked up almost $500,000 in medical bills.
  • I have been "on the road" working ever since. Walking was very difficult in the beginning and made me so exhausted. I work 10-12 hours a day (mostly sitting). Looking back, I think it was a good thing I had to work. I was so busy/tired I didn't have time to dwell on anything or pity myself very much. I just grabbed my bootstraps and kept on keepin on.
  • Now 11 months later I am still tired all the time. And, I find myself feeling lonely more often (it's a hazard of the job.) But, I am stronger physically, mentally, and emotionally. I am ready to take the next step and get past all of this. This is what I have learned.
  1. I must sleep at least 8 hours every night.
  2. I must eat regularly and better food.
  3. I must exercise more.
  4. I must have hobbies that I enjoy.
  5. I must spend more time with family & friends.
  6. I must share the "spoon theory" I read here.

I'm so over GBS and I am determined to get the better of it. The Goals I am working on now are:

  • Quit smoking by 12/31/14
  • Lose 25 lbs by 12/31/14
  • Increase my physical strength and flexibility

I am doing this by:

  • Cutting back on cigarettes and vaping
  • Tracking and Journaling my eating and exercise every day
  • Beginning to practice Yoga everyday
  • Beginning Weight Training

My long term goal is to feel less tired so I can continue to work for 7 more years and retire feeling stronger and healthier. I want to enjoy the rest of my life. I don't want to feel "sick".

I am betting there are many people out there that feel like me.

Sending you encouragement and positive energy to reach your goals, sandishus! Keep us posted on your journey.

Keep strong Sandi, and quit smoking asap (I'm an x-smoker!)

Wow - you have quite a story. I am glad you are better. You have set realistic goals for yourself. Keep up the good work !!

Wow! I can relate to the repeated attempts you made to get help, and having them keep sending you home. I must have went to the ER eight times before I was finally admitted to the hospital, and I went to the doctor numerous times too. I kept getting worse and worse and nobody knew what was wrong with me, but it was suggested that I was suffering from mental illness or anxiety. It was so frustrating, because my symptoms were clearly physical, at least, it was clear to ME. How can we get the ER staff at hospitals to be more aware of diseases like GBS? I wonder, how many people die of it because they cannot get help in time?

I had the same issues… Being diagnosed and getting someone to believe me was my initial battle now its trying to get others to understand that just because I don’t “look” sick doesn’t mean I’m not… Keep up the good work! Stay strong!

I just saw your story again - I see I responded to you in September. I hope you are doing well.