Day 20- The Faces of Guillain Barre: Sarah S's Story

Friday, May 20, 2016 0 Comments

In 2008, I was working full time as office manager on an organic research farm. They were spraying pesticides all over the place, mostly RoundUp, but the other staffers wore hazmat suits. The office workers didn't. I have no idea if this had anything to do with my illness.

I kept going to the doctor and she poo poo'd my complaints. A month before the GBS hit, I broke out in giant red welts all over my arms and legs. She gave me antibiotics and sent me home. She got really angry when she found out I was using painkillers and she wouldn't treat me anymore. Later on when I had a pain doctor, he was quite judgmental and told me to exercise more and that I was lazy. Not to be believed what some doctors say behind closed doors. It hurt on a very deep level.

I woke up in the middle of the night with searing, earth shattering pain so debilitating I could not stand, eat, walk.... and I had a high fever. I was a single mother living with my teenage daughter in a new town where the only friends were either from her school, or my work. We were very isolated and 3 hours away from my sister, my only family member. I called her in a panic that night and told her "I think I'm dying!" She left her very young son behind (for the first time ever) and drove down to help me.

The next few weeks are really sketchy, as is that entire year. I could not convince any ER to admit me, they kept sending me home, until finally I was in the local hospital. Looking back, I cannot believe how vulnerable I was and how shockingly inept that hospital was. I was in with a roommate, who had the menu items read to her daily, while I was not allowed any solid food because they couldn't diagnose me. For 10 days, I was given liquids and jello only, I was never given a sponge bath or a shower the whole time. The doctors would hover around the foot of my bed mumbling and looking awkward and hardly spoke to me, just looking bewildered. They announced to me at 1:00 in the afternoon that my insurance would cut off at 3:00 that day (because I had no diagnosis). I was sent home AGAIN.

My illness was mostly in my legs and feet. Simultaneously painful numbness (my feet were like Herman Munsters, big blocks) and also super intense nerve pain all up and down the legs and feet. Also my hand clench into claws, they still do, like muscle spasms. It's so painful. I never experienced the breathing issues or paralysis that some people report. I guess I was lucky. So far, I've never met anyone who's gone through this and I feel SO ALONE.

I was able to get a coworker to pick me up and he drove me down to UCLA in hopes of getting a doctor to diagnose me. I was getting worse each day and losing more function. All I could do was rock back and forth, holding my legs tight and just moaning in pain. At UCLA I spent a whole day lying on the floor of their ER, waiting to be seen. I was totally out of it. Finally, a neurologist examined me, and administered an NCV test. He told me that any first year med student should have been able to diagnose me and that basically I had a lawsuit against the first hospital. I could not even think at that point, and a family member who lived in LA was good enough to put me up at her place after 2 weeks in the hospital. I'd had my blood "cleaned" (Plasmapheresis) but to no avail. The doctor who gave me the test told me to be quiet and lay still, in a very harsh manner. I was in so much pain it didn't register at the time. My family member had an extra bedroom with an adjustable bed. It was such a God send. 

The next year was a blur of being completely psychotic due to the meds I was on. I was still in crippling pain, and my legs had started swelling up, especially my feet and ankles. My toes jutted straight out, my feet were so swollen. A friend of mine who's a nurse sent me a pair of compression knee socks. Another God send. Those little things that added comfort were SO very appreciated.

A work friend handled my disability the first year (state) and then when it ran out I filed online for SSDI. I was so sick the first year I could not turn on my computer because the light was painful to my eyes. My poor daughter was dealing with a mom who could no longer drive and could barely function, much less take care of a 14 year old girl. I was hallucinating. I thought the TV in my bedroom was telling me something scary so I slept on the living room couch from then on. I was literally out of my mind. Eventually I got on facebook just to help me out of my isolation. I found so many long lost friends and kids I grew up with. Yep, another God send. Thank you, Facebook!

After a year my kid needed to switch schools and suddenly she had no school bus to take here there. I had no feeling except pain in my legs and feet but I tried to drive and lo and behold I was able to do it somehow. Muscle memory I guess.

So gradually I became slightly more normal. At first I used a van service to get around, and hired a woman to take me shopping for food. Another lady came in to give me a shower once a week. I couldn't do anything anymore. Eventually the whole thing plateaued and I wasn't getting worse anymore. I had lost much of my hair and about 25 lbs. I was not heavy to start with and I became really skinny. 

Sarah right after the worst

I moved back near my sister to be close to family and better medical care. New meds caused me to gain 50 lbs. It came off when I went off the meds but my body was confused! I finally won my disability case after 2 years. Another God send. I eventually got some function back. I graduated from a year on the couch, to using a walker, and finally a cane. 

I lost so much of myself along the way, it's hard to figure out how much and when and where but I have constant struggles with extreme fatigue and depression. I think I've gotten used to the pain... it's 24/7 and I just kind of gave up and shrank back into myself. I'm still stuck. But I did go back to college and got myself a masters degree in psychology believe it or not.


Thanks for encouraging me to write this. I've never written about it before.