I am a 35 year old woman living with GBS in the United States.
I was very sick with pneumonia, bronchitis, and intestinal issues the fall of 2016. After many visits to various doctors, I was admitted to the hospital on November 29th 2016 and that is where all of the fun began…
First, there was a flu epidemic so I was given both a flu and pneumonia shot the night I was admitted. 3 days later the hospitalist found a pulmonary embolism in my lung. There was an emergency procedure where placed a small “trap” down in my lung to catch it. It was successful. I had every test run on me imaginable to figure out what was making me so sick: multiple colonoscopies, bone marrow taps, EKGs, etc. It was exhausting and dis-heartening.
In December 2016 I noticed numbness in my feet and hands. You all know the symptoms; tingling, burning, then nothing. I tried to walk and I fell and I broke some tiny bones on the top of my foot. I told the doctors about the sensations, and they just chalked it up to my severe edema. FINALLY, they listened to me and a neurologist visited me and performed tests. He came back a few days later and told me I had GBS. I was so relieved to have a diagnosis that I only half listened to his prognosis for me: he told me he hoped he would see me walking again one day, patted my leg, and left. I was like, what the hell? So I looked up GBS on the internet, and cried myself to sleep
I eventually left the hospital, totally helpless. Xanax didn’t even leave a dent in my anxiety about my predicament. I had the worst case of the “Why Mes?” I couldn’t move any part of my limbs, it was like they were there for show. My first rehab center was for acute patients only. We had 4 hours of both occupational and physical therapy everyday. It was intense and sad. I was only able to be moved by hoyer. I eventually learned to use a sit-to-stand machine and to kinda wash myself up and feed myself with a special spoon. Then, I had to leave because you could only stay there 40 days.
I was moved to another nursing/rehab building next door. It was a nightmare. Therapy was great, I had occupational and physical 3 times a week for an hour. I worked so hard, and in April I was able to stand up by myself in the parallel bars. By the end of my 120 days (all that was allowed by my insurance) I had 75% usage of my hands and could take 10 steps with a walker. I lost that insurance because the school system I worked for laid me off for my absences. So I had to move to another facility.
I am in my third and (hopefully) rehab/nursing home. I have spent every bit of my life savings on medical bills that just keep arriving daily. I don’t qualify for SSI benefits because as an educator, I paid into a pension fund, not social security. I am currently at the mercy of the United States government to provide me Medicaid. I have been rejected 3 times, but I keep digging up more documents and doctors’ statements. It is ridiculous how it’s like they don’t believe I am ill. IVIG for 2 days is over $40,000!!!
I can walk with a walker for short distances, and I have full use of my hands again. But I want to know if and when I will be “normal” again. I am in need of people to talk to about life like this. People are sympathetic, but they don’t want to hear the nitty gritty, the bad days when the Lyrica might as well have been a M&M. How when they took me off xanax I went insane and ended up on kolonopan, which my doctor is taking away too. I just want to know how the hell a single, youngish gal is
supposed to get back to normal.
Sorry this is so long, and devoid of alot of medical details, I can’t wait to get to meet you all!