The Faces of Guillain Barre 2017: Day 6- Kim

Saturday, May 6, 2017 0 Comments

 In May of 2016, I made the decision to change my life after a family vacation I realize my weight was limiting my ability to enjoy my daughter.

Thinking back it pretty ironic that months later I would end up with Gillian Barre. After hard work and diet I lost just over 100 pounds, I was feeling great accomplished happy, and then I got what I thought what was the flu, I couldn't keep anything down I ended up in the ER with dehydration. In and out with no reason or answers just you must have a GI virus. I have a 7 year old Daughter Bella, we love Halloween & are a make our own costume kind of family.  On October 31 after being in the hospital the prior weekend for dyhrdation, I put on my costume to take pictures with my daughter.  I then gave my costume to my Aunt because I just didn't feel good enough something was going on, but I had no idea how my life was going to change.

On November 13, I went to Bella's swim meet, I felt bad, I insisted I must be dyhrdated again and in my mind decided there is no way am I going to the ER again, so I was drinking water and power aid like it was going out of style; one of the other parents my friend Shelly a physician assistant noticed me struggling on the stairs and I was drinking a ton, she was concerned, I blew it off.

On Monday it was awful, I was in pain like I have never experienced, I struggled to walk up the stairs, I had to use my arms to get off the toilet.  I had a doctor appointment schedule on Friday so there was really no reason to go on Monday, so I just kept pushing fluids.  I got home that night after Bella's swim, I just needed to go to bed. I made Bella a peanut butter sandwich we headed up stairs only I couldn't lift my foot, I sat on my butt and went up the stairs using my arms. For the first time, I was scared something was wrong. I laid in bed worried I would die in my sleep and Bella would find me.  I am a single mom what would she do, I got up and got in the shower, when I turned on the water I could see the water hitting my legs but didn't feel the heat the water, I felt nothing, I cried. I had a pannic attack. I dried off got dressed, kissed my sleeping baby girl and went downstairs, I text my friend Shelly, she took me to go to the hospital. I didn't want to leave my daughter to wake up with her mom in the hospital again.

 I called my mom to come over early to put Bella on the bus because I needed to go get my blood work done. I continue to text my friend Shelly that said I really think you should go to the hospital, I think you have Guillain Barre; so I googled it. I laughed she must be crazy. I am just dehydrated. My mom came over to get Bella ready for school, I said good bye.

I remember driving to the Cleveland clinic office to have my blood taken, and then waiting at the walkin clinic to see a doctor. I still had no feeling to the touch of my legs. I was talking to the nurse going over my symptoms she said we can't treat you here you need to go to the ER, my doctor came in with a wheelchair and took me to the ER; I was there for about 2-3 hours and was relocated to a hospital with a neurologist that was going to be able to diagnose me.

Doctor Lindenburgh examined me and attempted a spinal tap in the room, it was to risky so he ordered for it to be done in radiology. It was awful, I was scared, I was alone, I was no longer able to walk, I cried, I vomited, I watched the clock as they did the spinal tap.  I lied in a bed afterwards alone, scared, in pain, a killer head ache, I watched awful videos on my phone of what happens with Guillain Barre.  Dr. Lindenburgh started IVIG that afternoon as the paralysis had move up to my lower rib. It was confirmed the following day November 18, 2017.

After 7 days of IVIG, I was moved to Acute Rehab at southwest hospital, being away from my daughter was the hardest part.  I never minded before being a single parent, I am 37, I had dated on an off through my twenties but nothing substantial- I haven't even gone on a date since my daughter was 2. I was comfortable being single or so I thought.

Being sick and single is hard, I don't really know how to explain it. Rehab was tough, but I was well taken care of I had great PTs, due to insurance I was likely sent home to early but that was ok with me it was the week before Christmas. I was using a walker crawling up the stairs not working, I had no savings to pay bills. I was a hot mess no income, low energy and zero independence.  I missed my life, it's hard for people to understand yes I am lucky to be alive, I am greatful I never was put on a ventilator, that I am able to walk, I get it but I am in complete financial ruins I am a single income family, I have only been released to work 10-16 hours per week but I am working 40, I am tired I have nothing left come 1pm, my legs are tired my body hurts my mind is mush, I get a ride home from work and fall asleep, I don't have energy to play with Bella.  I wake up on the couch with her begging me to play or do homework, make dinner, I am failing as a parent it's a terrible feeling.  My poor kid has been thru so much this year.  She needs me to get better, to recover, to earn an income, to make her dinners, I am her only parent she never has even met her father.

It is almost 6 months and I still have no feeling in my feet, I have phontom pains, night terrors, I have memory loss and I have lost my independence.

People often ask how are you doing, it's just easier to say improving everyday GBS has a slow recovery; no one wants to hear my insurance company sucks and will only fill 100 Gabapentin not the 150 my doctor prescribed, did I mention I have a 15k deductiable before anything is covered or that my doctor is terrified to provide me with narctoics for my pain because I live in a county where there is an opaite epidemic, so I take advil for pain, what a joke!  I sleep about 3-4 hours total from about 6pm-8pm and then 1am-2 or 3am if I am lucky; I wake up in pain with muscle like cramps that won't release or phantom pains that my feet are on fire, my friends and family think I am better because I don't look sick anymore, I am still recovering and everyone else has decided I am better.

I try to stay positive, look on the brighter side be grateful for all I have, I am luck to have a beautiful daughter a reason to live family to love me; and to be honest GBS did teach me that I jumped to anger to easy before.  I don't yell as much I don't freak out about things that aren't important or maybe I just don't have the energy.