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Day 31- The Faces of Guillain Barre: Kelly's Story

Tuesday, May 31, 2016 0 Comments
Wednesday December 16th, 2015 started off like any other working day but by early afternoon, unbeknown to me, GBS symptoms started showing.  At lunchtime I noticed a little bit of weakness in my legs which I dismissed due to sitting on my chair awkwardly. Late afternoon I had a little bit of drop foot and at about 5:30pm my right arm felt a bit tingly when driving home.  I got home after a 30-minute drive, walked up 6 stairs to my front door and it was like I was fighting gravity.  By 6:30pm I could not, with the strength of both hands cut through a raw carrot when helping my husband cook dinner.

I basically put how I was feeling down to a bad cough I had been trying to get rid of for the past few weeks.  Put myself to bed early and when I woke in the morning, my legs were lacking in strength but could get myself around the house.  Before I could make my appointment with my local doctor, I was on the kitchen floor unable to get back on my feet.  My husband was at work and my 17-year-old son was sleeping... So I lay there banging on the back door calling out until I was heard.

I was able to crawl to a seat in the lounge room where I stayed as my husband was on his way back home.  He helped me back up to my feet, scooped me into his vehicle and off to the A&E we went.  The first doctor I saw suspected GuillainBarre Syndrome and referred me to the hospital where I was admitted.  I had never heard of it before and could never have imagined what was coming my way.

From there things started to go downhill fast. Within 2 days had paralysis from the neck down and I could no longer care for myself.  I started IVIG treatment on December 19th, 2015 and moved to HDU the next day as I required more care than the general ward could provide.  I remember my son seeing me in HDU.  I was hooked up to monitors and a feeding tube.  I could see the worry in his tear filled eyes - and me (still trying to be a strong mum) saying to him - "It's Ok, it’s not as bad as it looks". Every time I think of that moment, I laugh to myself because it was clearly that bad!


ICU December 20th, 2015

Overnight I was moved to ICU and there I stayed until Christmas Eve!  I only remember bits of my time there as I’m sure I slept a couple of those days away.  Energy levels were at zero!  For me that time in ICU was fast but for my husband and son it felt like time stood still.  

My lungs partially collapsed, requiring ventilation was touch and go but I was lucky enough to start showing signs of improvement and was back on the general ward in time for Christmas!  Christmas day was something different... My husband and son were in to see me first thing and the rest of my family came in throughout the day.  It was an exhausting day but I loved every minute of it!



Christmas Day 



Over the next week, I gained more strength my catheter came out, I exercised every day and I was able to bare my own weight.  With the help of a walking frame I was able to walk very short distances - I was free from my bed and it felt so good!  Every day I had something new to show my family that I could not do the day before.  Small things in everyday life that at this point, were massive for me.  

Life was looking good!  Another week of great gains followed and I was discharged from the hospital on January 1st, 2016 now able to walk short distances on my own unassisted.



I left the hospital with unrealistic expectations of myself and my recovery. Thinking that I would carry on making improvements as quick as the last two weeks and that I would be back to the old me in no time.  But that is not the case and It was hard coming to terms with that. I wanted to live life like everyone else and not feel like I was holding my family back. The fatigue is so crazy!  I have learnt my limits and am now more aware of what my body is telling me.



I am lucky enough to be able to work from home on part time hours while I carry on with my recovery.  I am exercising regularly and am now able to get out and see friends without it being so taxing.  I am still lacking in general muscle strength, have pulsing like pain in my calf muscles that comes and goes and fatigue to deal with but I know that I am lucky.  It could have been a lot worse.  I am thankful every day for how far I have come and for all the support from medical staff, family and friends I have received.

To my husband, my son, my parents, siblings, family and friends... There really are no words to express how grateful I am to you all for all the love, time and support you have given me over the last 5 months! X

Day 30- The Faces of Guillain Barre: Derek's Story

Monday, May 30, 2016 0 Comments
My story begins in January of 2012. On around the 10th of January I started feeling like I was catching a little cold and was having swelling in my legs and face. I went to see my dr that Thursday and she gave me some lasicx and some antibiotics. Well I grabbed some cold meds and I went home and stayed in the bed all weekend. 

Monday I wasn't feeling any better so I called in sick and tried to get some rest. I got out of the bed to use the bathroom and I didn't have enough breath to walk to the bathroom and back to the bedroom so I had to sit on the couch and rest. I still couldn't breath so I had my father in law call the ambulance. They came and immediately started breathing treatments and quickly rushed me to the hospital. I figured they would give me some steroids and send me home but this is where the nightmare started. They said they were going to admit me and were gonna give me something to help me sleep because I haven't been able to sleep because of all the coughing. This was the 16th of January

The next thing I remember was waking up with my wife beside me saying that you've been really sick and she was so glad I was finally awake.  I tried to sit up but I couldn't move any part of my body. It was February 20th when I woke up the first time. The said that I had Infectious Bacterial bilateral pneumonia. Which is an infection in the lower lung in both lungs. I developed a blood clot while I was sedated so they couldn't put the boots and the circulatory pads on my legs in fear of the blood clot moving to my brain. I had foot fall as a result of that. I also developed A-Fib and Mersa. They were able to wake me up after they administered the tracheotomy. I was in ICU for 86 days and was finally able to go to the step-down unit after that. I was told that I would never have any use of my legs and feet and would probably be only able to use my left hand. 

Through the power of prayer and the elders of my church laying hands on me we proved that not to be true.



Well I left the hospital after a couple of months but was in a wheelchair. I still didn't know anything about CIDP at this point. I  was making tremendous strides in my recovery. I had to learn how to swallow, talk,stand,walk,use the bathroom, and just simple day to day stuff that we take for granted. After I had gained the strength in my legs enough to walk I started noticing that my feet were tingling and I couldn't feel my toes and my right arm and hand was numb and tingling a little. I  told the dr but they tried to say it was because I was diabetic. Before I went in the hospital I was never diabetic. By the way I forgot to mention that I was only 35 years old. 

Well the tingling was getting worse and the pain was unbearable. I would be laying in the bed in tears hurting so bad that I was wanting to just cut them off. I went to a place that said they specialize in neuropathy and would inject narcaine into my feet and legs. I was ignorant and hurting so bad that I went back about 5 or 6 times. The whole time I'm doing this I'm taking percocets, lyrica, Cymbalta and so much other stuff I can't remember. 

Finally I was referred to as neurologist named Dr Healy. He ordered nerve conduction study and within 20 minutes diagnosed me with CIDP. He had me immediately started doing IVIG treatments twice a month for over 9 months. They seemed to stop the spreading but hasn't done anything for the damage that was already done. 



I'm speaking just for myself when I say this. I've tried so many different kinds of medication and lotions and treatments till I could scream. I know what works for me but it might not be the trick for you.  I have a 100mg Fentynal pain patch, I take 900mgs of lyrica a day, I take 10/325mgs of percocets 4 times a day and I spend most of the day in the bed with a heating pad at my feet and my right hand under the covers. I have learned through therapy to keep my mind busy and to try to get out of the bed no matter how much I am hurting at least once a day. I have had to learn how to deal with the pain in my own way. It never stops, it never eases up except for about an hour after I take my pills. I'm 39 years old now and I've realized that God has given me another chance at life. While I was in my coma the dr told my wife on 3 separate occasion that she needs to be ready for the worst because there's nothing else they can do for me. To call my family in. I know that everyday is a blessing and we are not promised tomorrow. With this disease find your pain level, try to be at peace with it and keep looking for answers. I'm not accepting this as a way of life for the rest of my life. Somewhere somehow there's a cure for this.



I'll be praying for all of you and please keep me and my family in your prayers. Thanks for listening and I hope I didn't ramble on and was able to help.

Day 29- The Faces of Guillain Barre: Gina's Story

Sunday, May 29, 2016 0 Comments
My story began on a Monday at work when the skin on my arms started bothering me.  I recall telling a coworker that "just having my dress touch the skin on my arms was hurting."  I thought it was because a new dress, thinking it was the fabric.  I went home that evening, went straight in to take a shower, and sat on the couch.  My husband said I felt hot, took my temperature and said it was 101.5.  I emailed my supervisor and called off for the next day.  

That morning, I slept until 11:30.  I couldn't recall the last time I slept that long, but immediately knew something was wrong.  As I tried to get up, I had a "floating" sensation.  I couldn't feel my feet touching the ground and made my way to the couch by holding on to furniture and walls.  I sent a message to my husband, who was an hour and a half away, and told him I was going to call my son to leave school and take me to the E.R.  He told me to wait - that he would leave right away and be there as fast as he could.  While I waited, I googled symptoms and messaged my sister (the family researcher).  By this time, I noticed that the left side of my face was drooping, so stroke was one of the things on our list of "maybe's".  Guillain-Barre was also on that list. 

I was immediately admitted when I got to the E.R., was completely paralyzed within 24 hours and honestly - the next three weeks is a blur.  The pain, and the frustration of not being able to move and not having a diagnosis was enough to make me want to give up.  It was two and a half weeks (after the second spinal tap) before all other possibilities were ruled out and I was diagnosed with GBS.  I was immediately given IV Immunoglobulin and began to turn around.  I never had to get a tracheotomy. One of my brothers sat at my bedside and focused on two things - straightening my fingers and making me breathe into that tube.  I came close, but that was a bullet I am thankful to have dodged.  

I only spent a week in rehab.  I did my morning OT and PT, napped, did band workouts in my room, napped again, went back to the workout room at night, and napped some more.  Thankfully, I had been going to the gym often prior to my hit with GBS because I credit my weight-training classes with my quick recovery - it is amazing how fast muscles atrophy; if I could tell families of future GBS patients one thing, it would be to work their legs and arms while they are in the hospital (preferably right after a dose of morphine)!  

I recovered at home for the next couple of months - doing OT and PT on my own and a lot of yard work.  I hit my one year last month and am still only working part time.  I take 400 mg of Gabapentin and 50 mg of Tramadol at night, when my leg, feet, and lower back pain are the worst.  I will never be full time - chronic fatigue sets in after only a few hours of mental work.  I can walk for long periods of time and do other hobbies for hours, but nothing tires me out like focusing mentally.

6 months post GBS

I am about as good as I'm going to get and I'm okay with that.  It has been and will continue to be a long journey and I hope that all who struggle with the after-effects of GBS find comfort in groups like this.  I certainly do and I thank you, @thegimpygirlwhocould for putting this effort together.  We are a very small community and I have found comfort and a sense of belonging through reading everyone's journey.

Loop Love

Saturday, May 28, 2016 0 Comments
Coming from a small town... And I mean a 15 mile radius with less than 200 people... We have to find our own ways to entertain us. Usually that turns in to driving around and maybe drinking beers and shooting squirrels.

The loop is Corning to Black Butte Lake down Newville Road to Paskenta... Sometimes up the mountain... Depends on how much we need to clear our heads... Then back to Corning, we may even throw in Lowery and McCarty Creek Roads.

8 years ago I moved into "town" which is still a small town in the middle of nowhere off of I-5. Every time I need some peace in my life or to find myself I head back out west and take my beloved loop.

To us Flaskentians (us who grew up in Flournoy/Paskenta, not only lived there) that loop is our sanctuary. It has seen many tears and beers. It's where we tell our deepest secrets.


One of the hardest parts of not driving due to Guillain Barré Syndrome is not being able to take to loop when ever I want to. The last time I took it was in December before Kari moved away... And I ended up puking while the girls were taking selfies while laying in the road...

Nessa, Shell, Me & Kari

As we were driving around someone mentioned how I should write a book
about my experience with Guillain Barré Syndrome... Nessa piped up and said "you should write a book full of everyone's Loop stories... Now that's a book I would read."

So whats your loop story? I'd love to hear it and share it in a blog series... These days I need to live vicariously threw others so entertain me dang it! :) email it to justinesgbsjourney@gmail.com weather it was yesterday or 30+ years ago, let's hear them. 


Day 28- The Faces of Guillain Barre: Angie's Story


I enjoy reading your story and all of your inspirational messages! I have attached my video which tells my GBS story! It all started in Oct. of 2014 and I am still recovering. I was having horrible headaches, blurred vision, achy body... Then the numbness and tingling started. I went to one ER to be turned away, went to another on Monday, and by Thursday was paralyzed up yo my eyes and placed on life support where I spent the next two-three weeks in a drug induced haze with vivid hallucinations. 

Before GBS

I spent 145 days in the hospital, spent the next 10 months in physical therapy. I went from power wheel chair, to walker, to quad cane, to cane, to AFOs only. I still live my life with wearing AFOs but I try and push life to its fullest. My story is a bit unique as I was bite by a tick and contracted Lyme disease, doctors believe that was what triggered my GBS. Not only was I fighting GBS but my body was fight Lyme disease, as well. A double whammy. 

During GBS

Before I was sick I was a huge runner, having ran multiple halves and a full marathon I dream of getting back there. I now enjoy, swimming, biking, and les mills body pump classes. 

I have two kids age 6 and 2 and I try and never say "I can't" around them! GBS has changed my life forever, not a day goes by that I do not think or speak of this life experience but I will forever be an advocate, raise awareness, and remain hopeful that I may be put on that race course once again! 

Current


Day 27- The Faces of Guillain Barre: Alyssa's Story

Friday, May 27, 2016 0 Comments
I have been following your account for a few weeks now on instagram. 
Daily I go on there and just read, read everyone's stories, symptoms and pain management. I like to read about everyone's stories with Guillain Barre Syndrome because I like to know my enemy. 



I'm a 26 year old mom of 2 little boys. One Is 5 and the other is just 4 months old. I was diagnosed with this horrific "thing" as I call it just 3 weeks after my newest was born. He was born January 1st, second happiest day of my life and then this happens. It all started with a tingle in my fingers almost as if I slept on my hands, I guess you could say I was lucky because my paralysis didn't come on so quickly but it came on over the period of 14 days, every day a part of my body would stop working, not only was I paralyzed my sensory nerves are damaged as well so I can no longer feel hot or cold Like I did before. 

I knew something wasn't right and between January 16th and January 28th I was in and out of hospitals everyday only to be told I had post partum depression and to go home and take medication. Because being told it was all in my head at the end of it i really thought I was going crazy. I remember laying there saying to myself "if this is post partum I need electric shock therapy because this is so real to me" .. I finally went to see my OB on January 28th and told her I didn't wanna live this way and I needed serious help (I thought I was losing my mind) she did an examination and seen I had no upper or lower reflexes and she took her pen (I remember this vivdly ) and she drew on the bottom of my feet and I couldn't feel a thing, anyone who knows me knows if you touch my feet I'm not responsible for what happens to your face, she then phoned a nerologist who wanted to see me right away, most people would be terrified but I wasn't.

 I was so happy that finally someone was listening to me. I had a series of tests, spinal tap, mri and nerve conduction tests all results came back with Guillain baŕre syndrome. I didn't know too much about it until my days in the hospital where I would ask every question known to man.



 But writing this tires my hands but it feels good to talk about it and get it out there, I'm still so new to this and some days are better than others but to all the newer survivors & sufferers, and to those who may be sent or were sent back home with no answers. You know your body more than anyone else so fight for it ❤

Day 26- The Faces of Guillain Barre: The Story of Riley

Thursday, May 26, 2016 0 Comments


My nephews name is Riley. His parents are Ozzie (my brother) and Cheryl. He's the 5th of now 6 children. He comes from a remote fly-in community in northwestern Ontario. The population at the time was around 2500 people. He was diagnosed in 2012 just a couple days after his 2nd birthday which is December 5th. His parents relocated with his siblings to Winnipeg, MB for the duration of his hospital stay.

After living in a hotel for weeks they rented a house. We (his parents, his siblings, our mom and dad, and my grandma) spent Christmas Eve in The PICU waiting room while his parents were by his side. The kids enjoyed their surprise presents waiting for them under our "little trees" air freshener as a Christmas tree.

By New Year's Eve Riley was moved to a room one step down from PICU and we were all finally able to see him together as a family.

Members of his home community did a donation drive to help support his family financially while they were in Winnipeg.

He's now 5 years old and is finishing kindergarten next month. He's super excited to start grade 1 in the fall.

He's walking and running and jumping on his trampoline. and in May 2015 he became a big brother to Tanner (6th child). 

Familiarity

Wednesday, May 25, 2016 0 Comments
When you are sick you want to be at home. You want to be surrounded by the things and people who are familiar to you.

Getting sick with Guillain Barré Syndrome came out of left field... It's something that I never imagined. Like most people I'm naive... I wanted to think that bad things don't happen to good people. That my family had already had their share of bad health experiences and that I should just be exempt. 

Unfortunately I was wrong. Becoming quickly paralyzed and on life support was a blow to not only me & my husband. But also my close knit family, friends and community... It's just something so odd but devastating.

From the first night in the hospital my grandma sent out the "bat signal" and my Aunt Leann came and hung out with us while the doctors started their lists of tests. The next morning my dad came and also a dozen or so cousins, aunts, uncles, grandparents and a few of my friends. 

Fast forward a few days- I was on a ventilator with it breathing mostly for me. My eyes were closed and fixed for a month and all that I could move were my thumbs. Laying there completely exposed, drooling and locked in my own body unable to easily communicate. They could ask me yes or no questions and I was able to answer with my thumbs- right for yes and left for no.

I remember hearing one of my loved ones asking a doctor how long it was going to take to get back to my normal self. The doctor said he couldn't answer that since every GBS case is so different from the next. But be prepared for me to be in hospitals until March... It was December. I thought the doctor was crazy... No one is in a hospital for 3 months.

Your mind does odd things to survive when you can't communicate... It was so hard not to talk in general but excrusatiing when it's something so big and terrifying and you stuck in your own mind and you can't talk it over with someone.

In not my finest moment I recal wishing I had cancer instead... And instantly feeling guilty. It wasn't that cancer was any less terrifying and devistating...But cancer was something I knew. Something my family has ralleyed against too many times. Something you can be aggressive and fight.  While with Guillain Barré all you can really do is wait around for the nerves to regrow. It's all about patience... Which I had very little of. I wanted to fight... But instead I waited in the darkness with such overwhelming pain that I didn't know where it was coming from... And know one knew...

Just to be clear, I'm in no way down playing cancer. I have had handfuls of family members and a few friends who have had to fight to live. I respect them all tremendously.

At that moment I so badly wanted to be home. I felt guilty for my family and friends being ran rugged to come see me. I'm told that every night when I was at the local hospital for 3 weeks at least 25 of my loved ones were there in the waiting room. My family bonded with more of my friends. They took turns bringing dinner and to come and hold my hand. I'm so grateful for them. But I have to admit, I never felt so alone. Someone was always with me and holding my hand. Telling me the latest gossip (Corning was pretty lame at that time), spilling there sarrows and triumphs. But most importantly, they were suctioning the never ending drool from my mouth & making sure the fan was on me lol.

Through out my stay I was constantly getting meds for my never ending pain (more on that another time) ... Once I returned home 131 days after being in hospital care I rarely took anything for pain. Yes I had some pain but I was happy... I was in my home with my husband and animals. Around all things familiar and that was the best possible medicine.


The first few days home- watching Frozen with my niece.

I'm nearly 18 months along with Guillain Barré. Every day comes with its struggles and constant pain... Even if I deny it. But I rather this life right here than one day at my worst. These people and so many more make this life worth living.

Day 25- The Faces of Guillain Barre: Simon's Story

I had never heard of Guillain-Barré Syndrome. I was 42reasonably healthy, and life was bubbling along quite nicely. My partner and I had two children and two cats. All was ‘normal’. I was very active; going on several long walks a week, cycling, playing football, and playing with my children. And I took all this for granted. There was no reason to suggest the biggest change in my life was just around the corner.  


One weekend I got a painful stomach bug, with strong leg pains,which laid me low for a few days. When I went to see the doctor, he told me to go to hospital. 

For the next five days, I was a patient with a mystery illness. At first they wanted me to think this was just irritable bowels, but I knew it wasn’t. The aches in my legs were by far the worst symptom, and a tingling had begun in my left thigh


With no answers, and hoping it would go away, I went home for the weekend. And the pains got worse. Even beer didn’t help. 


Thenstill in extreme pain, with both feet numb and tingling, and after collapsing several times, I was admitted to hospital, now with “something neurological”. As a 42 year old in a ward full of old men, I was left alone; experiencing a week of the most appalling and shocking neglect, as I rapidly lost the use of my legs, my bowels and bladder, then my hands. By the time Guillain-Barré Syndrome was diagnosed, much damage had been done. Within 24 hours it reached my lungs and I was suddenly an emergency. The deterioration in my breathing was so quick and so severe, I didn’t think I would survive the night, and tried to prepare myself to die. I woke up on a ventilator three days later in Intensive Care.


During the weeks of agony, discomfort and frustration in Intensive Care, I had vivid, extraordinary and ludicrous hallucinationsThey were as real and believable as anything else I saw and heard. 




Slowly I got the use of my hands back, and I began to draw. Once out of Intensive Care I made the first attempts to walk again, and after a week I was able, with the aid of a walking frame, to make my own way to a toilet. I was soon allowed home. But the pains and the stings remained. 


As soon as I left hospital, I wrote detailed notes on my experience, both the real and the hallucinatory. From the awful neglect before my diagnosis, to the highly professional treatment in Intensive Care, a lot of crazy things happened. One night for instanceI had attempted to take part in a lavish New Romantic photo-shoot, another night I listened-in on nurses rehearsing a musical about the Cutty Sark. I also witnessed a wild party, a flood in the ward, and nearly got to the moon in a spinning rocket. At least I thought I did


I wrote the book What the..? What Guillain-Barré Syndrome Did to Me as I thought I really ought to. I had an extraordinary story to tell.  The book was well-received, and among the comments were suggestions that health professionals should read it. BBC producer noticed it, and asked me to recount the story of my trip to the moon for an episode of Wireless Nights. The episode is still available on iPlayer:  bbc.in/1DrVqgT


After initially recovering well, I then had two slow painful years where there was no longer any progress. I could walk, but I had the frailty and stamina of a 90 year old. A short walk once a week was enough to knock me out with exhaustion. The pains and discomfort were always there.  

I then learnt something which changed a lot. After speaking to several other GBS survivors, I learnt that as my recovery had stopped for two years, it wasn’t going to start up again. Everything about my condition was most likely going to be permanent. 

Rather than see this as bad news, it kickstarted a very positive phase in my life. I knew I had to get used to it, and get on with it. I had taken up writing and painting, initially as a pastime, and wrote three books, and I taught myself to paint again by going back to basics and starting from the beginning.  I got better and better at it and eventually the paintings began to sell. 


Unable to work in the conventional sense, I became a self-employed artist. I’m three years into this. There’s not a lot of money in it, but there’s a great deal of pride in having my art on other people’s walls. I spent so many unhappy years in office jobs, wondering what I should like to be doing instead. Being an artist is a bit of a dream come true, and yet it took a life-changing illness to make it happen. 


My relationship with GBS is very strange. It was agony and frightful, it badly damaged my body and still affects every day life with its limitations, frustrations, aches and pains. And yet somehow, it’s made me a better person.  I have positive energy bursting out of me. I’m a prolific painter, composer and songwriter. I’m a writer too and my new book will be on Amazon in a few weeks. My fourth book since my GBS. I’m creative, busy and fortunate, and attempt to be positive.   

My family and friends were - and still are - superbly helpful and supportive.  That’s helped a great deal



It’s been over six years now. I’m permanently frail and always in pain, but I’ve learnt to get on with it. I’ve lost walking, running, football, dancing, and my independence. But most importantly of course, I survived. I’m still here, and very grateful for it. 

 

Simon’s ebook

What the..? What Guillain-Barré Syndrome Did to Me, by Simon N. Smith, is available on Amazon: for Kindle/I-phones/Smart phones etc.   Link:  www.tinyurl.com/nukv5sv

 

Simon’s artwork on Facebook; www.facebook.com/simonsartwork

Website: www.simonsartwork.co.uk

Twitter: www.twitter.com/simonsartwork

 

Day 24- The Faces of Guillain Barre: Abby's Story

Tuesday, May 24, 2016 0 Comments
Abby was sweet enough to let me share a new article that was written about her.

http://ipickuppennies.net/2015/11/the-time-i-almost-died/

What is a Spoonie?

Monday, May 23, 2016 0 Comments
Instagram has turned out to be a blessing when it comes to spreading awareness about Guillain Barré. Through hashtags I have come in contact with so many people who lives have been changed. Either by GBS or other chronic illnesses.

I kept coming across #spoonie ... So I googled it and looked it up on Pinterest... Naturally lol.

Spoonie is a term that describes someone with a chronic illness or invisible disease.  




I'm forever grateful for my recovery. It may be slow, but it's progress. 

And these people are always worth the spoons. 



When we were taking these pictures my husband and My bff husband were trying to figure out what my sign ment. The best they could figure was when I had to be spoon fed lol.

I may have more bad days than "normal" people, but I love my life and so thankful to for all of the understanding people in it.

Instagram and those stupid little hashtags have introduced me to a community of amazing people that are living with chronic illness like me. Having a community has been so important and helpful in my recovery.






Day 23-Faces of Guillain Barre: Holly F's Story




I was diagnosed with GBS just 20 days after the birth of my daughter. I was 26 years old. It started as a tingle in my finger and just 24 hours later I could barely walk anymore. Within 72 hours I was breathing on a ventilator in ICU. I spent almost 3 months there paralyzed from the neck down. 




I was severely depressed that I couldn't be a mother to my baby. But when I started to recover I realized I needed to work hard to get back to my baby. I spent ten weeks in physiotherapy and after 126 days total in the hospital I returned home to being a mother. I had an incredible recovery and was walking again with 5 months. I now see my experience with GBS as a blessing, as it made me appreciate my life and live it to the absolutely fullest.



See below for my GBS video. Thanks 😊

https://youtu.be/huN8iIWXNCs




Holly wrote a book about her experience with Guillain Barré Syndrome- "Happily Ever After"


Here is a link to her website: https://hollygerlach.com/

Day 22- The Faces of Guillain Barre: Kaitlyn's Story

Sunday, May 22, 2016 0 Comments


It was something I had never heard of, and unfortunately I learned about it by getting it. After two trips to the doctor and three trips to the emergency room because of tingling in my hands and feet and not being able to move anything but my head, and having complete double vision and crossed eyes, I was finally diagnosed on July 17th 2015, and admitted to the hospital.A day after i was moved into the icu, I had aspirated. I had to have a feeding tube put in and was then put on a ventilator. I don't remember being intubated. The last thing I remember Is not being able to breathe, and trying to talk but I couldn't, I was freaking out, and the doctor telling the nurse I needed to go under. I was living with the help of a machine, and out for 10 days. I could not move or communicate at all. My parents were trying to get me to write to them on pieces of paper, but nothing is readable. When I woke up I had no idea I had been there for so long.

When the machine and tubes were taken out, besides the feeding tube, I was moved to a different room in the icu. Still not able to move or do anything on my own, or control any of my body functions, I had the worst nights of sleep and days of my life. I still felt like I couldn't breathe and was panicking at times, and could barely raise my voice to speak.
Being a teenager, having to have a diaper, and having to be changed, was absolutely humiliating to me. I was only 16, and was so scared. I had no idea why any of this was happening to me. I became really depressed and almost angry, I was angry that I had to go through all this pain and suffering. About a week after I was moved out of the icu. I had to have a second feeding tube put in because mine stopped feeding the things through.

I still wasn't strong at all, I couldn't change positions in my bed, I had to call my nurse to move me because of pain. I was barely strong enough to push the buttons, most of the time I had to ask my mom to call.


In the hospital they worked on trying to get me strong enough to sit up on my own. And then eventually start to walk with lots of help and a walker.
Then I was moved out of town for rehab, stayed for a bit. But was ready to go home, and discharged to recover at home. It had been a really long ride. And I still had a long way to go. I still had to teach my muscles to work again, and walk again. I had to work to get all of my strength back. Using a wheelchair and a walker until I recovered. It was really hard not being able to do anything I used to do on my own. I was using my walker and assistance to get to my grandparents pool, and with my papa's help, I swam to try and get my strength up, and the coldness of the water was so comforting to the pain my nerves had caused. Swimming worked more than anything I was doing with PT and OT. So if you're trying to recover from gbs, and working on getting your strength back, I definitely recommend swimming.


I'm not sure what the variant of my gbs was, but I do know that my doctor said that in most people, it either affects the coating of your nerve, or the nerve itself. In my case it affected both. Which was even more rare than the disease itself. I still deal with symptoms every day, I get sick a lot easier now, and when I'm sick I'm really sick. I still have tingling in my hands, and sometimes my feet. And I have excruciating nerve pain on an almost daily basis. My face is still drooped a little, one side of my mouth doesn't move like the other, and after long days of activity, sometimes I can barely walk the next day. It's hard, but I'm prepared to deal with this for the rest of my life. I'm not going to let Guillain barré define who I am. I'm still going to drive and get a job and go to college. I'm going to kick gbs ass!


This whole experience has given me a new appreciation for life and a whole lot of other things. Before I was sick, I was very depressed, suicidal, and was even harming myself. But after this whole experience. My whole outlook on life has changed. I love myself, and I know I'm strong. And I also know that I'm cared about and that I am so lucky to be alive.

 I want to give a very special shoutout and thank you to my amazing papa, who was there for every step of my recovery. He'd come in and make me laugh, and he motivated me to not give up and work hard to get my strength. To this day he makes sure I do my exercises. He's my best friend. And I don't know if he'll ever see this. But I just want to say I appreciate all he's done and does do for me.

I'd also like to thank my nana for always making sure I had on Chapstick, and making sure my mom was eating. I'd like to thank my dad, my mom, and my boyfriend Kyle for staying with me through it all, another big thank you to my aunt Jess and uncle, and my cousin Brandon, whose pictured above with me in the hospital.
For being there, and coming to see me and trying your best to make me laugh.
Thank you mom for taking all that time off of work to stay by my side. Thank you for playing cards with me and comforting me when I got discouraged. And thank you dad for being there to support me whenever you were able to.
All of your support means the world to me.



I rambled there near the end, I apologize! Well, that's my gbs story. And to anyone out there fighting, you're not alone. You can do this. I believe in you.

Day 21- The Faces of Guillain Barre: Bonnie's Story

Saturday, May 21, 2016 0 Comments
This was tough to write. It brought back some memories I haven't thought about in years. 

My name is Bonnie and I was 18 when I was diagnosed with GBS.  I had just graduated high school and was working at the City Pool the summer of 1995 when everything that I had been planning on came to a screeching halt. 

A month before GBS

The end of July, my left foot was itching and I noticed a strange sensation that would not go away.  Within the next few days, the itching changed to numbness and it progressed to both feet and to my left hand.  I was also having severe back pain during this time.  I thought it might have been the way I was sleeping or the mattress, so I was sleeping on the floor and even in my sisters bed.  Nothing was helping.  I went to my PCP and he gave me a prescription for a muscle relaxer and said if I wasn't feeling any better in a few days, to come back.  My symptoms were only getting worse and I was not sleeping because of them.  After just a day or two, I was going to step outside on the back patio and fell.  

I knew something was wrong, but just couldn't figure out what it was.  My mom made an appointment for me to go back to see my PCP.  She had to drive me at this point.  I don't remember much of this appointment other than my doctor telling me to go home, pack my bags and plan on spending a few nights in the hospital.  I didn't realize until later, he pulled my mom outside the room and told her that he thought I had Guillain-Barre Syndrome.  He told her that I needed to see a neurologist and he asked her if we wanted to go to Dallas, Oklahoma City or Tulsa.  We lived in a small town in Southeastern Oklahoma at the time.  My mom said Tulsa because we had family that lived there.  My Dr. called a neurologist in Tulsa and he said "if you send her here, send her directly to the ER.  But if it were my daughter, I would take her to Dallas because it's closer."  So off to Dallas we went. 

 I was admitted to Dallas Children's Hospital and was immediately taken to have an MRI done on my brain and spine.  A couple hours later, I had the first spinal tap done.  The protein levels were high and that confirmed my PCP's original diagnosis.  I had GBS.  I don't remember a lot during my stay in the hospital. I remember hating to have to ask for help to go to the bathroom since it took my mom and a nurse to help me.  I remember when I would walk, I could hear my feet hit the floor, but could feel nothing.  I remember the food being terrible and the one day I got something good, a Subway sandwich, I didn't get to eat it because I had to go for some other test. 

 I remember having the 1st EMG and crying because it hurt so much. I remember the 2 guys going the EMG standing over me laughing when they shocked me so hard my leg twitched and I kicked the wall.  I remember my dad and brother visiting me in the hospital and my brother, who was 12, was more interested in the package of M & Ms on the counter. It was when the new blue M&Ms had just come out.  (I can't blame him, it was pretty cool!)  I remember getting a visit from what seemed like the entire psych dept to see if I was making things up before they would give me 3 doses of IVIG, Physical therapy and another MRI. I remember telling my mom, "Who would ever want to be a nurse!  That would be the worst . Job . Ever!!"

After 7 days in the hospital, I was discharged to go home.  Driving home from Dallas to our house, I remember a song that came on the radio.  It hit me then and has become "my motto".  It was Fleetwood Mac's song "Don't Stop Thinking About Tomorrow".   My life had changed so much in such a short amount of time. I couldn't walk, I couldn't feed myself, I couldn't roll over, I couldn't do anything by myself.  I started physical therapy within a few days of being discharged.   I was going 5 days a week for a few weeks and then dropped to 3 times a week.  Physical therapy kept me going In more ways than one... I was so depressed and alone. Going to PT gave me a reason to get up and get going. It gave me the "social life" that I was missing out on.  It kept me "thinking about tomorrow."

After a few months, I was getting stronger and was able to do a little more for myself.  But that was about the time the neuropathy pain started.  My feet burned and hurt so bad. The only thing that would stop the pain was to soak them in a cooler of ice water to numb them.  I was having to soak them about once an hour, day and night, before and after PT.  

This was my rock bottom.  Between the pain, not sleeping at night, the depression and feeling so completely alone, I was ready to die. I considered suicide but the only thing that didn't make this the best option was my mom.  I didn't want her find me.  My biggest regret was not telling anyone how much pain I was in...physically, mentally and emotionally. I tried too hard to hide it all. I didn't want anyone to know how bad everything was. I didn't let anyone see me cry. I definitely could have benefited from some meds at that time.

That low point lasted too long...about 6 months.  By this time I was seeing a neurologist in Oklahoma City.  I had another spinal tap, an EMG or 2, EEG, sural nerve biopsy (I still have residual problems from this after 20+ years) and lab tests monthly.  The neurologist started me on Neurontin to help with the pain in my feet. After the first dose, it worked!!  I slept solid for the 1st time in months.  That was my wonder drug!!  I didn't have to soak my feet in ice water any longer, I was sleeping, I was still depressed but nothing like before. I was getting close to my one year anniversary...July 29th and was back to work at the City Pool where I had been before.

 I was enrolling in fall college classes and had my next job lined up to start when the pool closed for the season. I was driving again.  I was dating.  I was thinking about tomorrow. Even though I looked like I was back to normal, I wasn't. I didn't have any feeling over the majority of my body, I felt clumsy and wobbly, I couldn't remember anything because of the Neurontin. And worst of all, I couldn't wear any cute, stylish shoes.  I was 19 years old wearing "old lady shoes".  Ughhh!

Not knowing what the future held, I took a chance and enrolled in the LVN program.  I took the admission test and passed, interviewed and was accepted. Also during this time, we got the Internet at our house.  This was when everything was still pretty new and chat rooms were nothing like today.  It just so happened that I met my now husband in one of those chat rooms!  He flew to Oklahoma for my LVN graduation and 2 weeks later I moved to California where I found out I passed the LVN test and got my license.  It was July 29, 1999. Four years to the day I got GBS.   I feel like I went full circle at that point!

It's been almost 21 years since I got GBS.  (The neurologist in Oklahoma changed the diagnosis to CIDP because of the residual numbness and lack of reflexes.)  I still have very limited feeling in my arms, hands legs and feet and still no reflexes.  BUT... Because of thinking about tomorrow, I've gotten married,  I've had 2 children, I've gone back to school to get my RN license. Even though I thought that being a nurse would be the "worst job ever", I can't imagine doing anything else. Going through what I have had made me a stronger person and a better nurse.



I try not to think about what I've lost... Even though it kills me that I can't feel my kids hands or face when I touch them.  I have to keep thinking about tomorrow. I have to keep going and try not to look back. That period of time was only a small part of my life. Granted, it completely changed my life and my families life, but in the grand scheme of my life, it's a small part.



And... Oh how I wish I could wear stiletto heeled shoes. If I could, I would wear them daily with my scrubs!  I'm waiting for that tomorrow when I can wear the really cute shoes... And when I can, my husband better clear out closet space because I'm going shoe ...stiletto shopping!