My Journey w/ Guillain–Barré (GBS)
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My name is Rebecca. This is the story of my battle with a rare and mysterious illness called Guillain-Barré (GUI-yawn bar-RAY) syndrome . Back in September of last year I was on top of the world. I couldn't wait to get to go to my dream job every morning and even better was getting to go home in the evening to my four incredible boys. All in all my life was perfect.
Then I got a sinus infection.
I get sinus infections quite regularly so it really wasn't a big deal. I treated it w/ OTC medications then, when after a week I wasn't getting any better, I headed to the doctor to get an antibiotic. Standard operating procedure for me. However...
On 10.01 I noticed a tingling in the fingers of my left hand. By 10.03 it had spread to my right hand, then it moved to my feet. 10.08 I realized I was losing the use of my arms and hands culminating that night in dropping my 11 m/o when my arms simply ... quit. I was also having trouble keeping my balance and fell several times in my home. By Friday morning, 10.09, I could feel the tingling moving up my extremities hour by hour and the pain in my hips which had started around the same time the tingling began was excruciating. I was taking massive amounts of acetaminophen and ibuprofen - both at the same time- and getting no relief. By the time a coworker got me to the ER that afternoon I was completely paralyzed from the waist down, had very little use of my fingers and nearly no movement in my arms. A spinal tap and an MRI confirmed what the doctor suspected: Guillain–Barré syndrome (GBS).
GBS has no known cause nor cure. It's basically your immune system turning on your peripheral nervous system, damaging it by destroying the myelin sheath that transmits signals between your nervous system and your brain. It seems to be triggered by a respiratory infection or stomach virus, more rarely by the flu vaccine, and has recently been in the news due to its feared connection to the Zika virus.
I spent two days in the ICU but was miraculously able to go home only a week later after receiving five intensive rounds of IVIG (immunoglobulin therapy). My work family stepped up and took my boys in until my own family arrived to take over. It has been said that GBS also stands for Get Better Slowly. I of course insisted that I would be the exception to the rule. I would attend my physical and occupational therapies faithfully and would be back to work in no time.
Ha!
It's now been nearly seven months and tho I'm still attending therapy three times/week I've not yet been able to complete ONE hour of five-minute typing/rest intervals, much less a full 8 or 10-hour shift's worth.
While I originally regained much of the use of my arms and legs within a month or two of being released from the hospital, things have been regressing over the past few months and no one knows why. I now find myself struggling to walk again and the pain increases daily. Did I mention the pain? I never knew such pain existed (outside of childbirth). It's nerve pain which is why neither Tylenol nor ibuprofen, nor any other standard pain Rx, can touch it.
I received word the beginning of April that my Long Term Disability (through my employer) had been terminated due to my PCP not sending in recent medical records. Tho they sent them in a few days later, I found myself already having to go through the appeals process to try and get my LTD reinstated.
Today I learned that a doctor/medical director working for MetLife has decided, after reviewing only my primary care provider's office notes of the past two months -not my hospital or neurologist's notes, nor the neurological testing that was done six weeks after diagnosis- there's no reason I shouldn't be able to go back to work. My PCP requested that they hold off on making a final decision until after I've had my appointment with a neurologist on Monday, 04.25, in the hopes that further testing will be done that will show the true extent of the damage done to my nervous system.
It will be another week or more before MetLife hands down their final decision. I have no other income aside from the LTD I was receiving and $900/mo in child support. I applied for SSI but was advised it would be August or September of this year before I receive an answer. Yes, August or September.
It seems that if I want to pay the bills that are due next week (when I would normally be receiving my monthly LTD stipend), I'll need to ask for help. Which is what I'm doing.
My boys and I don't have cable or satellite; our only luxury is internet. We don't eat out often (unless you count the grill), and our TV is a 10 year-old behemoth that serves us just fine. What I'm saying is is we live simply, and we love it. I'm only asking for enough help to replace what I would ordinarily be getting from Disability so that I can pay the bills -rent, insurance (health and car), electric- that are due at the end/beginning of each month. Child support pays the car note, utilities and gas, as well as diapers and clothes for the boys.
If you know me you know how grateful I am for each and every blessing God gives us. I have a feeling tho that His blessings towards us are going to be much larger than I have ever witnessed or anticipated, and for that I thank you.
Then I got a sinus infection.
I get sinus infections quite regularly so it really wasn't a big deal. I treated it w/ OTC medications then, when after a week I wasn't getting any better, I headed to the doctor to get an antibiotic. Standard operating procedure for me. However...
On 10.01 I noticed a tingling in the fingers of my left hand. By 10.03 it had spread to my right hand, then it moved to my feet. 10.08 I realized I was losing the use of my arms and hands culminating that night in dropping my 11 m/o when my arms simply ... quit. I was also having trouble keeping my balance and fell several times in my home. By Friday morning, 10.09, I could feel the tingling moving up my extremities hour by hour and the pain in my hips which had started around the same time the tingling began was excruciating. I was taking massive amounts of acetaminophen and ibuprofen - both at the same time- and getting no relief. By the time a coworker got me to the ER that afternoon I was completely paralyzed from the waist down, had very little use of my fingers and nearly no movement in my arms. A spinal tap and an MRI confirmed what the doctor suspected: Guillain–Barré syndrome (GBS).
GBS has no known cause nor cure. It's basically your immune system turning on your peripheral nervous system, damaging it by destroying the myelin sheath that transmits signals between your nervous system and your brain. It seems to be triggered by a respiratory infection or stomach virus, more rarely by the flu vaccine, and has recently been in the news due to its feared connection to the Zika virus.
I spent two days in the ICU but was miraculously able to go home only a week later after receiving five intensive rounds of IVIG (immunoglobulin therapy). My work family stepped up and took my boys in until my own family arrived to take over. It has been said that GBS also stands for Get Better Slowly. I of course insisted that I would be the exception to the rule. I would attend my physical and occupational therapies faithfully and would be back to work in no time.
Ha!
It's now been nearly seven months and tho I'm still attending therapy three times/week I've not yet been able to complete ONE hour of five-minute typing/rest intervals, much less a full 8 or 10-hour shift's worth.
While I originally regained much of the use of my arms and legs within a month or two of being released from the hospital, things have been regressing over the past few months and no one knows why. I now find myself struggling to walk again and the pain increases daily. Did I mention the pain? I never knew such pain existed (outside of childbirth). It's nerve pain which is why neither Tylenol nor ibuprofen, nor any other standard pain Rx, can touch it.
I received word the beginning of April that my Long Term Disability (through my employer) had been terminated due to my PCP not sending in recent medical records. Tho they sent them in a few days later, I found myself already having to go through the appeals process to try and get my LTD reinstated.
Today I learned that a doctor/medical director working for MetLife has decided, after reviewing only my primary care provider's office notes of the past two months -not my hospital or neurologist's notes, nor the neurological testing that was done six weeks after diagnosis- there's no reason I shouldn't be able to go back to work. My PCP requested that they hold off on making a final decision until after I've had my appointment with a neurologist on Monday, 04.25, in the hopes that further testing will be done that will show the true extent of the damage done to my nervous system.
It will be another week or more before MetLife hands down their final decision. I have no other income aside from the LTD I was receiving and $900/mo in child support. I applied for SSI but was advised it would be August or September of this year before I receive an answer. Yes, August or September.
It seems that if I want to pay the bills that are due next week (when I would normally be receiving my monthly LTD stipend), I'll need to ask for help. Which is what I'm doing.
My boys and I don't have cable or satellite; our only luxury is internet. We don't eat out often (unless you count the grill), and our TV is a 10 year-old behemoth that serves us just fine. What I'm saying is is we live simply, and we love it. I'm only asking for enough help to replace what I would ordinarily be getting from Disability so that I can pay the bills -rent, insurance (health and car), electric- that are due at the end/beginning of each month. Child support pays the car note, utilities and gas, as well as diapers and clothes for the boys.
If you know me you know how grateful I am for each and every blessing God gives us. I have a feeling tho that His blessings towards us are going to be much larger than I have ever witnessed or anticipated, and for that I thank you.
Organizer
Rebecca Lynne B
Organizer
Garretson, SD
