The Faces of Guillain Barre 2017: Day 13, Part 2- Dara

My name is Dara Dannette Silva. I was a senior in high school and 18 years old. I got a flu shot one day and the next I couldn't walk, I slowly lost feeling in my arms and legs, within 3 days of the shot I was fully paralyzed. Within 5 days of the shot I couldn't talk. Then 7 days after that shot I couldn't breathe on my own. I had a really hard time because the nurses and doctors thought it was impossible for me to have GBS so they thought I was faking and treated me badly. Till finally I went to a new hospital and they told me I wasn't faking and I had GBS the gave me IVIG. Slowly my arms and hands came back. Then I could sit up on my own. Slowly I taught myself to walk again. But my nerves are so badly damaged I still use a wheelchair.

I'm 20 now and I hope I still get better and I pray one day I never use that wheelchair again. Because of that year I lost my senior year. But that's ok because I'm graduating this year of 2017. I thank God for this journey it taught me a lot, it taught me to  appreciate life, do things don't just sit around and wait go for stuff go for it.

I died at one point from suffocation because I accidentally knocked off my oxygen. And I lived. I believe we're all here for a reason and thank you to everyone who took the time to read about me and my situation.

The Faces of Guillain Barre 2017: Day 13, Part 1- Dawn

My name is Dawn Drayton and I live in Barbados. At sunset on the 04th of February 2016 I was a normal, happy 36 year old.

I had life, good health and the love of my family and friends. My 15 year old daughter kept me focused, music and reading kept me at peace, life’s challenges kept me humbled and my dreams kept me determined…life was perfectly imperfect and all my own. The sunrise of the 05th of February 2016 was the catalyst for a series of events that threatened and failed to end my life but successfully altered its’ course forever.

Guillain-Barré Syndrome (GBS) started with bruises on my legs, swollen and painful ankles, severe back pain, a massive headache, vomiting and extreme fatigue. On my first to a medical care centre I was diagnosed with The Chikungunya Virus, given medication and sent home to rest.

Within five days my initial symptoms had worsen, I was experiencing numbness and a cold sensation in both hands and feet, my back pain was so excruciating that I could not sit, stand or walk unassisted and I had vomited so often that my throat and stomach muscles were sore. On the 11th of February, I attempted to get out of bed and I collapsed. I could not feel my legs and my hands were so weak that I could not push my body up.

On my second visit to the medical care centre I was referred to and admitted to the hospital. I spent that night in the most dreadful pain I had ever experienced up to that point in my life. The following day I was seen by an internal medicine specialist and a neurologist who indicated that he suspected that I had GBS and a lumbar puncture was needed to confirm. I had never heard of the illness and when he explained that it would cause paralysis I was terrified. Immediately afterwards I went into respiratory failure, had to be intubated and placed on a mechanical ventilator to breathe.

I was diagnosed with Guillain-Barré Syndrome-AMAN and for 9 weeks I was in the Medical Intensive Care Unit (MICU) in a coma and on life support. I was given a five day course of Intravenous Immunoglobulin (IVIG), blood transfusions and various medications. During that period, I was completely paralyzed from head to toe and attached to several different tubes, catheters and machines. My blood pressure, heart-rate and body temperature were all erratic, I was having seizures, my skin became dark and blotchy, my left lung collapsed, I became jaundice, I developed Bell’s phenomena, a sinus infection, heel ulcers and my body was swollen to more than twice its normal size.

The next time I was alert and aware of my surroundings was the 20th April, 2016. I was breathing on my own but remained partially paralyzed and unable to speak coherently. I had lost over 50 pounds, was still using a feeding tube and lacked bowel and bladder control.

I spent another 5 weeks in hospital beginning the process of re-training my muscles to complete the basic of task. On the 28th May, 2016 when I was discharged I was having involuntary facial muscle spasms and I could not smile, sneeze or open my mouth wide. My vision was blurred and my eyes were extremely sensitive to light. My body was stiff and painful. I had limited mobility in my left hand and shoulder, I was able to get my right arm moved across my body and raised to shoulder height. The fingers on both hands were clawed and rigid and I could not make a fist. I could only sit up with assistance and my spine was curved significantly and had to be supported. I had numbness, tingling and shock-like sensation in my legs and absolutely no movement at my hips, ankles or toes. I needed to be log-rolled and required full lifts to be transferred to and from the bed.

Fast forward to March 2017, it has been an emotional, long, painful and exhausting year…being home and unable to function as I did previously was a brutal reality check. I am still adjusting to living after GBS. I am in constant pain, suffer with insomnia and I get easily exhausted. I am always hot and perspiring, my short-term memory is non-existent and my eyesight has deteriorated significantly. My upper body is almost back to normal. Although I can now pull myself to a standing position, I still do not have feeling in or full function of my legs, I have severe drop foot and I am wheelchair dependent. I am doing occupational and physical therapy three times per week.

 
I have started a blog (https://www.dawndrayton-gbs.com); GBS in itself is a rare and it is even less common in Barbados, the intention of the blog was to build awareness of the devastating illness, reach out to other GBS survivors and make a positive difference in someone’s life. Along the way it has morphed into a form of therapeutic writing for me.

GBS has changed my life, it has stolen my smile and my legs but it will not break me…we are at war and every day is another battle, some days I win and others I have to retreat but I will keep fighting and surviving. I have lost and gained friendships but my daughter remains my focus and is my biggest inspiration. My family is my bed rock, I would not be here today without them, the hospital staff, my therapists and my prayer warriors.

Justine, thank you for the opportunity to share my story and be a part of the faces of Guillain-Barré Syndrome.
P.S.: We’re living with Guillain-Barré Syndrome (GBS), what’s their super power?

Dear friends and family, what I wish you knew- Guest Post by- Barbara Lewis Goforth

Please enjoy this guest post by, Barbara Lewis Goforth. This post is so real and truthful. It is something that every loved one of someone with a chronic illness should read.

Thank you Barbara for letting me share your words.

*****************************************

I wrote this to try and help my family understand what I go through. I hope by passing it on that it can help someone else

To My Family and Friends,

Please take a few minutes to read this letter. I have taken many of my minutes to do things for you, so I would appreciate your willingness to learn a little bit about what I am going through and the way it makes me feel.

Most young adults start the day with an unlimited amount of possibilities and energy to do whatever they desire. For the most part, they do not need to worry about the possible debilitating effects of their actions.

I do.

The hardest thing I’ve ever had to learn is that I have to slow down and not do everything I want to do. I fight this to this day. I hate feeling left out, having to choose to stay home, or to not get things done that I want to.

My fatigue - I am not merely tired. I am often severely exhausted. I may want to participate in physical activities, but I probably can't. Please do not take this personally. If you saw me shopping  yesterday, but I can't help you today, it isn't because I don't want to. I am, most likely, paying the price for stressing my muscles beyond their capability yesterday.

My forgetfulness - I may not remember what I promised to do for you, even though you told me just seconds ago. I may not remember to call you back—but I am not ignoring your phone calls. My problem has nothing to do with my age but in my opinion, it's related to the fact that my sleep is incredibly unrefreshing.

And please don't ask me,"Are you still working? Why don't you go out on disability?" Going to work and not thinking about my issues is sometimes the only "normal" that I experience. I have worked hard my entire life, why should I have to give that up now? Why should I let my illness defeat me to the point of giving in, throwing in the towel, to only sit at home, become less active, which will cause more pain and more depression.

I do not have a selective memory. On some days, I just don't have any short-term memory at all. Trust me, this is something I wish would go away. It is extremely difficult when I’m trying to memorize anything.

My intolerance - I can't stand heat. And don't be surprised if I shake uncontrollably when it's cold. I don't tolerate cold, either. Sometimes I am freezing when others are perfectly comfortable. Both are equally embarrassing, so please don't feel compelled to point this shortcoming out to me. I know. I can’t help it.

My depression - Yes, there are days when I would rather stay in bed or in the house. Severe, unrelenting exhaustion and pain can cause depression, especially at this exciting and active time of my life. Your sincere concern and understanding can pull me back from the brink of sadness. Your snide remarks can tip me over the edge.

My good days - If you see me smiling and functioning normally, don't doubt my previous confessions of exhaustion. I suffer from a chronic illness with no cure. I can have my good days or weeks or even months. In fact, the good days are what keep me going. So don’t say, “Oh, so you’re all of a sudden doing better today? I knew you’d get over it. I told you it was just all in your head”. Trust me, this doesn’t help. If you love me like you say you do, keep your opinions to yourself if you feel like you must doubt my sincerity.

And there are those who say "think positive and you will feel better" or my all-time favorite "get tough, exercise to build strength"… although if you’d take the time to learn about what I’m suffering from, you’d know that exercise only has debilitating effects on someone who is already grasping for any ounce of energy left in them.

Please understand the difference between "happy" and "healthy." When you've got the flu you probably feel miserable with it, but I've been sick for years. I can't be miserable all the time. In fact, I work hard at not being miserable. So, if you're talking to me and I sound happy, it means I'm happy. That's all. It doesn't mean that I'm not in a lot of pain, or not extremely tired, or that I'm getting better, or any of those things. Please don't say, "Oh, you're sounding better!" or "But you look so healthy!" I am merely coping. I am sounding happy and trying to look normal. If you want to comment on that, you're welcome to.

Please don't get angry at my seemingly lack of interest in doing things; I punish myself enough I assure you. My tears are shed many times when no one is around. My embarrassment is covered by a joke or laughter, but inside I want to cry....

You see, I suffer from a disease that you cannot see; a disease that there is no cure for and that keeps the medical community baffled at how to treat and battle this demon, whose attacks are relentless. My pain works silently, stealing my joy and replacing it with tears. On the outside we look alike, you and I; you wont see my scars as you would a person who, say, had suffered a car accident. You wont see my pain in the way you would a person undergoing chemo for cancer; however, my frustration about the way I feel is just as real and just as debilitating. And in some ways my illness may be more destructive because people can't “see” it and do not understand....

I have been accused of "playing games" for another's sympathy.

I have been told it is all in my head.

The hurt I experience at those words scars me so deeply I feel I have let my family down again; and still they don't understand.

I have been called unreliable because I am forced to cancel plans I made at the last minute because I’m so exhausted that I can’t even stay awake. Trust me, I’m not blowing you off to do something else that I’d rather do that day. I am left in my tears as I miss out on yet another activity I used to love and once participated in with enthusiasm. I feel like a helpless child at times...

Please understand that being sick doesn't mean I'm not still a human being. I have to spend most of my day in considerable pain and exhaustion, and if you visit, sometimes I probably don't seem like much fun to be with, but I'm still me, stuck inside this body. I still worry about work, my family, my friends, and most of the time, I'd still like to hear you talk about yours, too.

Please understand that if I say I have to sit down, lie down, stay in bed, or take these pills now, that probably means that I do have to do it right now, it can't be put off or forgotten just because I'm somewhere, or I'm right in the middle of doing something. Chronic pain does not forgive, nor does it wait for anyone.

I wish I could do more or know in advance what I will be capable of each day. I hate that you think I'm lazy or trying to dodge responsibilities. That's not it. Sometimes I just can't and other times I know it would be a mistake to use up all my energy on a minor thing and then have to give up something more important.

Sleep, when I do get some, is restless and I wake several times a night drenched in sweat and insatiably thirsty. I sit in a daze sometimes with indescribable brain fog ridiculing me as I stumble and grasp for clarity.

At times my feelings are irrational. My moods are erratic, and I get angry for no apparent reason, or way out of proportion to the trigger. This is just part of dealing with the stress, and I promise I'll try to keep it under control. I don't mean to direct the anger and frustration at you but I will sometimes fail.

Sometimes I need to talk about these irrational feelings. Just listen, okay? Please don't tell me how to feel or how not to feel. You can't fix my feelings. Please don't judge them: just accept and acknowledge them. When you say such things as, "Your illness must be terribly frustrating for you," I feel understood and comforted. But don't tell me that you know how I feel, unless you also deal with a chronic illness.

As I try to maintain my dignity as much as possible, please do me the small favor of trying to understand and learn about what I am going through. So many of my "friends" no longer talk to me or even acknowledge my presence, I have seen some in public and its extremely noticeable that they are trying to avoid me at all cost. Not answered their phone when I have called because I needed the support of a friendly ear or just needed to hear someone's voice. I hope you will gain some sympathy in life, for one day, you will or may have problems too, and I would hate for you to go through what I go through.

Please understand that chronic pain is variable. It's quite possible (and for many, it's common) that one day I am able to walk a long distance and back, while the next day I'll have trouble getting to the next room. Please don't attack me when I'm ill by saying, "But you did it before!" or "Oh, come on, I know you can do this!" If you want me to do something, then ask if I can. In a similar vein, I may need to cancel a previous commitment at the last minute. If this happens, please do not take it personally. If you are able to, please try to always remember how very lucky you are, to be physically able to do all of the things that you can do.

On a brighter side I want you to know that I am still me. I am still the girl who loves to give, loves to smile, loves to make you proud… I am still that girl. I still have a sense of humor, and if you take the time to spend with me you will see that. I love to fix things for people to know that I made their problems go away. I am fun to be with if you will spend the time with me when I’m feeling well enough to do so; is this too much to ask?

I love you and want nothing more than to be a part of your life. And I have found that I can be a strong daughter/friend/sister/mother in many ways. I can be your confidant, your friend, your support, and many times I will be the one to do the research and find the answer for your problem; many times I will be your biggest fan and the world will know how proud I am of you and how honored I am to have you in my life.

So you see, you and I are not that much different. I too have hopes, dreams, and goals for my life, but I also have to battle this demon called a chronic illness every day. Do you have an unseen demon that assaults you and no one else can see? Have you had to fight a fight that crushes you and brings you to your knees? If you have, I was there for you, wasn’t I? If you have to fight something like this in the future, I will be by your side, win or lose, I promise you that; I will be there in every way that I can. I will give all I can, I promise you that. So please, do the same for me.

I have to handle this thing my own way. I’ve done the best I can thus far. Please understand that I am in a battle, and I know that there is little reality of a cure or effective treatment, at least right now.

I want to be assured that I can trust you and that you will be available to listen and try to understand. And I'll try to understand that you can't always be available.

I am not giving up. I am hopeful. I have complete faith that I will somehow recover from this, and once again live my life to the fullest. But in the meantime, I need your encouragement, love and understanding. I know that I asked a lot from you, and I do thank you for listening. It really does mean alot.

The Faces of Guillain Barre 2017: Day 12, Part 1- Maria

My name is Maria and I am from Venezuela but I live in Miami Fl. I am now 7 years out. I was in a Wheelchair for 4 months. I was able to get married and give birth to a baby 5 years later. (Natural birth no problems) 

The night I became paralyzed I was taken to the hospital ..... I don't remember anything there. I received plasma treatment and help to breath but no need for a ventilator in my case. This was around April 2010 I do not recall the day .. I lost my memory for a good month I  had a lot of inflammation in my cerebellum. 

I am from Venezuela so my family was not here so no pictures were taken ... (thank god) and I never took a picture of me when I was bad. It was a very dark moment in my life a lot of depression being alone in this country and have all this complications. 

I am a very positive person so this was hard for me. 

Doing PT 

We have to keep fighting to get our life together :).

Love to all!

I have my on Facebook page, Instagram and youtube channel about how to live better with Foot Drop

https://www.facebook.com/womenwithfootdrop/posts/1834472333502788:0

@womenwithfootdrop

https://m.youtube.com/channel/UCiik1Q5IaJXDO93D9eJJhtA

The Faces of Guillain Barre 2017: Day 11, Part 2- Autumn

Autumn was normally a healthy, happy little 2 year old child. Dancing, playing, keeping up with her sisters. On this day 2 years ago life was normal. Well however a normal, crazy, busy life of a family of six can be. But this particular morning something was not quite right, for some reason she could not stand or walk on her own.  

The day before Autumn got sick. 

On day 1 we brought Autumn to the hospital Emergency. I worried maybe she had menningitis. While at the hospital her voice began to sound a little hoarse. Doctors thought maybe she had a virus. They gave us a nebulizer with some meds and that evening sent us home. The next morning she was weak, could hardly raise an arm and she was going downhill fast. We took her back.

With no recent vaccination or injury, no previous signs of illness doctors were stumped. blood, saliva, x-rays taken and nothing to blame yet. Autumn was admitted and in less than 48 hours on her first overnight stay Autumn's nurse called a code blue. Autumn was rushed to ICU and intubated.

 

Autumn in ICU

 She now has pneumonia. Her heart rate is not stable. She gets a nerve conduction test and spinal tap. Because the cause of GBS is unknown and hard to diagnose, all other tests are like a process of elimination. The spinal tap showed high protiens in her spinal fluid and the nerve conduction test showed no signal to her hands and feet by electrical stimulation. I think because a virus was suspected, the infectious diseases unit came in. Donned in all yellow clothing covers, face masks, gloves. Asking all kinds of questions all the while I thought is this real? We also had to change and sanitize each time in and out of autumns room after that. 

 On day 4 she is diagnosed with Guillain-Barre' syndrome. One round of IVIG blood treatment was given. We could hardldy say the words Guillain-Barre' syndrome. How are we supposed to explain to our family? And for such a big name how did I not hear of this before? And why doesn't anyone know if she will be ok? As I wandered those hospital halls for the 100th time it felt (probably more), I noticed one small sign on a bullitin board that read GBS/CIDP support group meeting bi-weekly. In this giant hospital I thought there should be something bigger out there. I felt like I should have known all about this mysterious illness that my child is up against. So I thought there has to be more. I was affraid to talk to anyone and I was afraid to google anything for fear of finding out the worst case scenarios but I think searching was the best idea. I think searching online prepared me...well helped me understand how her body was behaving anyway! Nothing could have prepared me for this!

 On day 5 was just one MRI left (Just to dot the I's and cross the T's doctors said). Autumn was then diagnosed with Transverse Myelitis (that means they found swelling in the spine). A curve ball. Doctors had to decide if steroids were going to be used or continue with the IVIG blood treatment. Most Importantly, they had to stop the swelling. They decided to go with 5 days of agressive IV steroids. She had hypertension. Her oxygen levels were not stable, her heart rate was still not stable, she had alot of mucus in her lungs and her diaphragm was not working. 
On day 7 I did not truly know for sure if I would be taking Autumn home.


Once the steriods were stopped she then started plasmapherisis ( a slow 3 hour process used to drain blood from the body, separate plasma from the blood cells and return donated plasma and the cells to your body. The exchange replaces antibodies in the plasma that attack the immune system.) Her hemoglobin was low. Autumn needed a blood transfusion. Doctors told us that once their symptoms are at their worst GBS patients hit a plateau and then slowly improve. I wondered if her symptoms were at their worst. I thought how could it possibly get any worse?

Autumns first time outside as her twin sister picks a flower for Autumn to smell....ahhh all of a sudden only these little things matter and all the big things that mattered don't anymore.

It wasn't until day 10 I believe that we were seeing small improvements. Or maybe at that time it was that she wasn't getting any worse. It was a roller coaster recovery. Doctors believe that because she was only a child her recovery was a speedy one. Guillain-Barre' syndrome affects only 1 in 100,000 adults and less in children, only 0.5 in 100,000. Transverse Myelitis affects 4.6 in 1 million people. Mostly aged 10-20 and after 40. Autumn spent 19 days in the PICU and 11 days in pediatric care. Remarkably It took Autumn only 46 days to take her first steps but a couple of years so far to almost fully recover. Autumn was just lucky I guess.. and in less than 2 months even more lucky to have walked away.

The only cause for her illness that doctors could blame was a test that came back positive for rhino-virus (a common cold) that we believe everyone had previous to autumn getting sick. She had no symptoms for days or weeks leading up to her hospitalization. Besides all of the medications...Autumns course of treatment was 1 IVIG, 5 days IV steroids, 1 IVIG, 5 days plasmapheresis, too many medical staff than I can count and a lot of pain that I could not ever imagine in 1 lifetime.

Autumn playing the best she can in her hospital bed 

16 months post GBS/TM doing bicycle tricks with her sister.

Autumn 2 years post and no one can even tell that she was ever so sick. 

I remember bringing Autumn to the park when we first brought her home from the hospital. She couldn't do much other than barely sit but she loved it there. She was so thin and weak. Just sitting in the sand. Dark circles under her eyes. I thought to myself, boy if someone approaches us they are definitely calling childrens services on me. Now she is back to running and playing and causing trouble. There are times she gets sore or tingly feet. I can hear a difference in her voice still but she is here, she is loved and she has an amazing story that I hope she can use to help another person in need of support!

 Love Danielle and Autumn

Alberta, Canada

This is a video that Autumn's parents created when she was a few months into her recovery. I remember watching this video nearly 2 years ago and being inspired by this little girl. But also baffled about GBS. How only one twin is struck by GBS. Even so, we all know that GBS affects all loved ones.

https://m.facebook.com/story.php?story_fbid=10155968568205066&id=558445065&refsrc=https%3A%2F%2Fm.facebook.com%2Fjason.lays%2Fvideos%2F10155968568205066%2F&_rdr

  

The Faces of Guillain Barre 2017: Day 11, Part 1- Angie

Saturday, May 11, 2013, a day that changed my life. I woke up around 5 A.M. and having to go to the bathroom. As soon as my feet hit the floor, I knew something was wrong.

My nephew & I tubing on The Shenandoah River (Summer 2010) Such a fun time!

I staggered down the hall and looked at the clock on the wall. It was double. When I made it to the bathroom, I looked at myself in the mirror and couldn’t focus. I tried so hard. I could see that my pupils were dilated. I woke my husband and we went to the hospital a little while later.

My brother Adam & I at The Arnold in Columbus, OH. March 2012. My brother, Adam Mamola, is on The American Bench press Team and is The World Record Holder! I too, used to compete years ago, but not at The International level. I did hold some state & national records back in the day..

Jumping on the beach -Summer 2012

They started running tests. Bloodwork and CT scan all were normal. The ER doctor called a larger hospital to get another opinion of CT scan. Everything looked OK and the doctor said if I got worse or didn’t improve to go to my family doctor on Monday. 

I got progressively worse. Sunday the next day was Mother’s Day. We went to visit my mom. I couldn’t walk without holding on to something. I used the wall to avoid falling. My hands felt like two balloons. They were tingly and numb. My pupils were still as big as quarters. 

Monday, May 13, I could barely walk. I remember my husband calling my GP and me lying in bed, thinking I am dying. We left the house, my husband helping me to the car. I could barely lift my feet to get into the car. We arrived at the office  and the doctor asked if I could touch my nose and I couldn’t.  He then asked me to try and drag my heel down opposite shin and I couldn’t do that either.

 He called Winchester Medical Center and told them he was sending us to them. My symptoms mimicked a stroke.  My husband drove me to hospital. He got me inside. We were registering and I noticed I could hardly write. It looked like a first grader’s handwriting. I was so scared!

All GBS fighter's can relate to this!

I was admitted immediately. I had tons of blood drawn, an MRI, CT scan and lumbar puncture to determine what was happening.  All of my tests came back normal. While I was relieved it was also very frustrating at the same time. I wanted to know what was happening to me and what was wrong! I remember having the MRI and this scared me the most because they were testing for MS.

At the time of my MRI, around 11 P.M., I was waiting for the techs to wheel me in. As I was waiting I was so nervous and scared and could hardly see anything. My vision was doubled and blurry. Across the hall from me was an empty room with a radio on. I heard a song. Although I didn’t recognize the song it sounded like a pop song by a boy band. After the song someone came on the radio and said “If you’re having marital problems, work problems, or health issues, don’t look down look up”. This brought me peace. It was God comforting me. I know this without a doubt. I needed this right then at that very moment. My fears were put to rest when they said no lesions were found.

Me with Rufus, a therapy dog that my employer arranged as a surprise! This was the only time I smiled while in the hospital. I cannot even put into words the joy I felt when I saw this beautiful dog walk through the door and then get upon my bed. I petted him with numb, but very hypersensitive hands. It's crazy that we have both sensations!😑 This memory still makes me tear up..

Over the next several days I was bed-ridden. I was finally diagnosed with Miller Fisher Syndrome on May, 17th. I had all the symptoms, paralysis of the eye muscles, dilated pupils, double vision, lack of coordination, numbness  in extremities, especially my hands, no reflexes, slow swallowing and weak muscles. I couldn’t feed myself. I remember becoming so exhausted after just a couple bites. The therapist said it was normal to feel exhausted. I had a swallow study, followed by softened or liquid only food for a couple months.

Summer 2013- with my beloved dog, Gibson

Summer 2013- with my sweet, Libby- always by my side

PT and OT worked with me doing leg and arm exercises, which were difficult because I was so ataxic and weak. I had Physical and Occupational therapy two - three times a week for the next three months. I used a wheel chair for 8 weeks and then a walker and eventually a cane. I patched one eye to cope with the double vision. My optometrist ordered a Fresnel (prism) lens to help with vision, which worked well for me. One morning I got up and looked at the clock and it wasn’t double anymore. Two and a half months after getting sick. I was beyond happy because I honestly thought my vision may stay double.

December 2013- 

I had this shirt made & also had another one made for a man my husband works with. He had GBS in August 2013. We attended the benefit for him and both wore our shirts. Raising awareness!

I returned to work part-time on September, 3, 2013. I couldn’t believe the day before all this started I was normal. My husband and I were on our 9th week of P-90 workout. Prior to this I had a severe sore throat and upper respiratory illness. The doctors seem to think this could have triggered my immune system which then turns on itself.

May 2015. My husband & I hiked approx. 8 miles on the South Rim of The Grand Canyon!

Today, May 11th, 2017 is my 4 year anniversary with GBS. I do have some residuals. I have some numbness, burning and pain. I have a spotty memory sometimes which I believe is from the Gabapentin I take. I have good days and bad days but nothing that compares to when I first got MFS. I have never felt  so helpless as I did back then. 

standing in front of The Grand Canyon last May 2016.God it felt like I was on top of the world! I love that place​! It was very emotional for me not just because I was overwhelmed with one of the most beautiful, grand, places I've ever been, but because I could walk the trails of one of the most beautiful places God has made!

Today I am grateful to be able to do what I once did. I have to remember to pace myself. If I really push myself too far, my residuals really flare. I am grateful to be able to write this.

I am so thankful for family who stood by me for three months daily. My husband took FMLA for three months to stay with me. My parents would come over after work and help out.  Most of all I thank God that I’m still here to share my story. I am blessed.

Angie
Virginia USA

The Faces of Guillain Barre 2017: Day 10- Elizabeth

My name is Elizabeth, I am 52 years old, and I am from Fairfield, CT. My journey with Guillan Barre has really only begun.  My nightmare started on December 4th, …..really, I guess it started on December 1st when I had my long anticipated, much desired hip replacement surgery. I have had bone on bone arthritis in my right hip for years. Last March, I was diagnosed with Rheumatoid Arthritis, and my orthopedist thinks that sped up the destruction of my hip. It was collapsing, my leg was shorter than the other, and I was in pain 24/7…level 9-10.

Before GBS- my husband and I at the Make a Wish gala

My surgery was a success, my doctor said it was even worse than we had thought. I felt better immediately, and did so well, I went home the next day, Friday. I could even do stairs! I was ecstatic, virtually pain free.
Sunday morning I woke to some pins and needles in my hands and feet, and didn’t feel great. My husband and I attributed it to surgery, sleeping on my back—you have to in order to keep your hip at a correct angle. As the day progressed, and I felt worse, we thought maybe a drug reaction—ambien/oxycodone—things I was not used to.

At about 6pm, I needed to go to the bathroom and was feeling really awful. My husband was behind me and I had my walker. After I was done, I literally could not get myself off the toilet—even with the raised one we had. My husband helped me, and we started out of the bathroom. My legs gave, and we still do not know how, but somehow we caught me and I didn’t go down. All I could think was do not mess up my hip! We got me over to the bed, sat down, and just looked at each other and we agreed, I needed to go to the ER, and since there was no way I could get down the stairs, we had to call 911.

I had my first ever ambulance ride, went to the ER…and that began a 48 day stay in the hospital and rehabs. It was the last time I walked.

I had multiple tests…it’s all a blur. I was told later, I was very lucky, because the neurologist on call that night specializes in the ‘weird’, and he immediately thought Guillain Barre.

By Tuesday, 12/6/16, after many MRI’s and a lumbar puncture, among other tests, it was confirmed that I did have GBS. The doctors think it was triggered by my surgery.  I started IVIG that day. One a day, for 5 days. After learning more about GBS, we realized how lucky I was. It basically was knees down and elbows down, it affected my taste buds, big time, and my blood pressure sky rocketed. I had buzzing all over at times, but zero feeling in my feet which were swollen blocks of ice. My hands were major pins and needles, but I could use them. No feeling really, but at least I could feed myself….like a toddler, but at least I could. I I didn’t pay attention and I was holding something, I would drop it…and still do sometimes.  Swallow tests were good, thankfully. I was totally miserable, dehydrated because even water tasted like crap, barely eating…you just cannot live on bananas, oatmeal, sweet potatoes and chocolate pudding alone. Those were the only foods I could tolerate. My back was killing me, I could not move my body easily, and let’s remember, I also just had major surgery and a brand spanking new titanium hip. We had to be very careful rolling me…and I told everyone that if my hip dislocated, whoever did it was going right to hell with me! I was barely sleeping. It was definitely the worst I have ever felt in my life.

I was accepted to go to Yale New Haven Acute Rehab in Milford Hospital in Milford CT after my IVIG was done. I was thrilled—great reputation and I’d have 3 hours of intense therapy a day. They moved me Sunday, one week exactly after I went into the hospital. It is a small acute rehab, and I had a big private room. The dietician listened to me about food and drink, and adjusted as much as she could and got me on Ensure. The doctor changed my sleeping pills, added a pain med and a lidocaine patch on my back at night. They got me on gabapentin too….and I finally started sleeping! I still felt like crap, but at least started feeling human…plus I could be in my own clothes.

Much of my rehab is a blur…days rolled into one another. Slowly, my strength began to improve, my taste slowly started coming back. One of the real highlights is that they allowed my dog to visit. My husband brought Brodie almost every day…and the entire staff, and other patients, all loved seeing him. We would pack pillows around my legs, because touching them felt like awful electric shocks and burns, and he would jump on me and lay across me. It was worth the pain.

About a week into my stay at rehab, it was time to take the staples out of my incision from surgery. A day later, one of my favorite nurses was concerned about fluid discharging from my incision….and sure enough, I had a hospital borne infection…and a bad one…pseudomonas. So, that began a six week run of two different IV antibiotics. I had to have a pic line put in, which actually was good because I am a hard stick, and had bruises all over my hands and arms from the nurses trying to find veins to draw blood. They did a cat scan and it showed a pocket of fluid in my hip, but not near the prosthetic, which was good news. The bad news was that the hospitalist wanted to discharge me, bring me back to Bridgeport Hospital, so that my surgeon could see me. This was two days before Christmas. I strongly disagreed and fought them, and so they had an ambulance take me to my surgeons office, where he saw me and said he was not concerned, and that it was not unusual to have a pocket of fluid, and that he felt the antibiotics would take care of it. Phew!

sorry about my dogs eyes- Christmas in rehab

So, I go to celebrate Christmas in the rehab, where at least I had my private room and had flowers and plants and Christmasy things. One month from my start at the hospital, my occupational therapist took me for my first shower. I cannot even tell you how good that felt. It was hard, and transferring from the shower stool back to the wheelchair wet was a painful and difficult experience, but worth it. To be really clean, have my hair washed with my shampoo and conditioner….it was awesome!  I was slowly getting better, but standing was greatly complicated by my hip surgery. You cannot bend past a 90 degree angle for weeks, and you cannot cross legs, etc….for fear of dislocation. Finally, though, using a machine that did not bend me too much, we were able to get me standing. Soon after, I did it with the parallel bars! But…I still could not feel myself standing. My hands were still very pins and needles and I could not really feel, but my coordination, dexterity and strength were building up. One minute of standing and I’d be sweating from the effort.

Sadly, I could not stay at the acute rehab for more than thirty days, and I got moved to the Grimes Center in New Haven. Everyone was very nice, but it was dreary and I got far less therapy, though the therapists were great. Too many people and too few aids, nurses and therapists. And I had a roommate…and older woman with dementia and a stroke, she yelled all the time and smelled. My husband decided that it was time for me to come home…so we targeted a day, and he got the house ready…stair lifts installed was the primary thing, and moving some furniture. We got a sliding shower stool, and a few other things. Meanwhile, I graduated to using the commode, and was standing more.
The big day came, and we had a wheelchair van come to bring me home. It was scary to leave the safe rehab, but oh, so good to be home with my husband and dog. Sleeping through the night! What a treat!

I still had the IV and Pic line, so a nurse came to teach us what to do. After five days, I was finally done with that and the nurse came back and took the pic line out! Freedom!

I think that just by being home, eating well, doing my green smoothies, taking my supplements, actually getting solid rest, not just a few hours here and a few hours there, I started to heal more. I also think that I was forced to figure out how to do things and just start trying. I had a zillion Christmas presents I had bought well before my surgery, that needed to be wrapped, and many mailed. I hired an aid to come 5 hours a day and Lorraine has been a lifesaver, and probably a marriage saver. She helps me shower and dress, though I need less and less help with that—I still cannot shower alone. She does our laundry, changes the sheets on the bed, cooks when we need it, helps with my therapy…really whatever needs to be done.

I am walking with the walker sometimes, as long as someone is with me. I can now stand to pull my pants down and stand to pull them up! I can go to the bathroom like a real person and it no longer exhausts me to get myself dressed again. If I could do a happy dance, I would!  I can stand and pivot and get into the Jeep. I can almost get my shoes on…and that is mostly due to not being able to bend because of my hip. I am typing again, not well, but doing it. I can blow dry my hair, only bonking myself on the head a few times with the hair dryer. I still have major neuropathy in my hands and feet, and I still have a long way to go. My Rheumatoid Arthritis has my ankles totally swollen and I cannot go back on a biologic due to the neuropathy, so we are trying a drug called Arava. I have tapered off prednisone, which I have been on for a year due to RA, and starting to take weight off that I need to take off.

I am also blessed to work for a wonderful company, and I work from home. They not only paid me while out for two months, they sent gift cards to my husband to a place that delivers all the ingredients for a meal. Melinda, the owner, said he shouldn’t have to worry about what to cook. She called me often but never spoke of work, it was all about me. I was told my job was mine and waiting for me. The love and support from them for me and my husband has been amazing. I have great friends that have been there for me, my family has been amazing….my sister in law has done so much.  I am very lucky.

I started back to working a couple of weeks into my return home, a few hours a day, and it’s morphed back into full time. But flexible time so when I have therapy ( still in home ), I can do it. If I need to rest, I say so. The owner, my boss, has made it very clear she wants me well so we are all in it for the long haul.

My husband has been a rock. I know he’s getting tired of being the caretaker. Before surgery, he already had to cook most nights because by the end of the day, I’d just be so exhausted from pain. But I still took care of the dog, fed him, took him to play ball in the mornings. Now, everything falls on my husbands shoulders, including getting me breakfast and cooking dinner, and cleaning up. He’s stressed and tired, and gets pretty crabby with me. I just remind myself how much is on his shoulders. We’ve had a couple of blow ups….he got nasty one day and I just blasted him back, saying we hired Lorraine ( my aid ) so that he doesn’t have to do a lot, that I am trying to do as much as I can myself, and not once has he said thanks for trying to lighten the load. I asked him how he thought it felt to be totally dependent on someone that yells at you all the time. He apologized….and we are fine—sometimes you just need a blow up to clear the air. He has really gone above and beyond for me, and I could not do this without him.

The reason I write about my husband and I and how all this affects a relationship is because it’s the  reality, and we as the dependent ones have to realize how much stress this is on our loved ones and caretakers. All of a sudden doing things they haven’t had to do….taking care of everything. We are lucky, because my company paid me. In many cases, the primary breadwinner is suddenly incapacitated for a length of time, and the caretaker also has to deal with bills and insurance, on top of physically caring for their loved one. It’s a tangled nightmare.
This disease takes so much from us. I have a triple whammy, with having had total hip replacement that I have not been able to rehabilitate, rheumatoid arthritis that is flaring, and Guillain Barre that paralyzed my legs, and major neuropathy still in my hands and feet. I continue to improve, and I definitely will be with the walker almost exclusively soon. I try to do new things often, and am usually successful. I have been toold by numerous people that my attitude is amazing and they don’t know how I remain so positive all the time. I have had my moments and melt downs, don’t get me wrong, but my answer is that I don’t really see any other option than to be positive. Failure is not an option so I have to move forward, as slowly as it is, I still progress. And humor helps me get through things. I am into my 14th week…my holidays were spent at the rehab in Milford. Winter is almost over and I am still wheelchair bound. I don’t know if my neuropathy will go away. I have an EMG on the 28th and that will tell us the extent of damage I still have.

this year at the Make a Wish gala

Let’s hope my luck holds and it’s just the myelin and then I can do another IVIG treatment. I am planning on gardening, taking my dog for walks, going for bike rides and going out on the boat with my husband…among many other things this spring and summer!