Guillian Barre Awareness – Part One

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This month is Guillian Barre Awareness Month. Once a year I will share my experience with others. This is a long post, but an important one. I have had many many people that knows me that have asked what it is that I have. That’s not an easy answer. I will do this over a couple of posts.  I have links below of websites that can give you information about Guillian Barre Syndrome. The videos below will tell you what both Guillian Barre Syndrome(GBS) and what CIPD is. They are short and easy to understand.

I have the Chronic inflammatory demyelinating polyneuropathy (CIDP) is an acquired immune-mediated inflammatory disorder of the peripheral nervous system. The disorder is sometimes called chronic relapsing polyneuropathy (CRP) or chronic inflammatory demyelinating polyradiculoneuropathy (because it involves the nerve roots).CIDP is closely related to Guillain–Barré syndrome and it is considered the chronic counterpart of that acute disease.Its symptoms are also similar to progressive inflammatory neuropathy. An asymmetrical variant of CIDP is known as Lewis-Sumner Syndrome (This discription which is a simpular way of describing it is from Wikipedia)

I don’t have pictures or videos of how it was for me when I first heard the words from the Dr that I had Guillian Barre Syndrome. I will provide links at the bottom of this post so you can understand what it is and I will post a youtube video of Crystal Browns experience is very close to my experience.. I was admitted into the hospital and was put on a ventilator.

I was 17 years old when I came down with Guillian Barre Syndrome. The way my Dr told me what it is by saying that the American name for it is French Polio. He also told me that once I’m able to walk again and it was a year for that to happen, but when I regained my ability to walk and to do other things like smile, lift my arms, talk, open and close my eyes, blink, frown and all of those things that I would be immune from it ever happening again. I would like to pay a visit to that Dr which, I’m sure he is dead by now, but I would like to share that it does come back and it did.

When I first noticed that there was something wrong with me, I was living in Texas. My back then boyfriend and my husband now noticed that I was getting overly tired when doing simple things. Things like walking up three stairs, riding a bike, cleaning the house or feeding dogs. About 3 week prior to this, I was given the flu shot. I was given that shot before I went to Texas. I ran away from home for many reasons. Just the day before I jumped out the window, I received the shot.

I got Guillian Barre Syndrom (GBS) and later regiagnosed with CIPD. The difference between the two is that with GBS it is a one time thing. Once you get better or the best you can be, it is done. It all varies case by case  on how much someone will regain thier sstrength. Some have life long residuals and that’s what I thought I had. But, I have the CIPD variant since I have had it three times and I have lifelong residuals.

 

As I was walking into town, which was just a mile and that was nothing for me. I was a cross-country runner and ran a minimum 10 miles a day. I was also a track and field runner and won many awards and ribbons. I was the anchor on our track and field team since I was the fastest runner on the team. I basically share this with you because walking a mile to town was nothing to me.

I got into town OK, but once I left the little store, I noticed my legs were very heavy. I had to sit on the curb to rest. I always went to the store in Nolanville.TX and then I would walk across the street to head back to the house. I didn’t think I was going to be able to make it across without someone hitting me. My legs felt like lead. I did make it back to the house, but I had to craw up the steps. There was no way to call Chuck to have him get me. There was no cell phones or anything. But, God gave me enough strength to get home.

My husband and I were living with his friends Craig and Mary Carlock. When I walked through the door she wanted to help clean the house and do the dishes. I always did the house and most of the cooking. Since I had no job and they let me live there, I did all that stuff. Mary started yelling at me when I told her I had to lay down and that I was very tired. She called me lazy and that I was lying to her about me being tired. I did do the dishes, but dropped one of them and she was furious. I had no choice, but I did have to lay down.

Chuck and I went out a few days later and we went to see Star Wars in Harker Heights. I was tired, but not as much as when I walked home. When the show ended, I couldn’t get up on my own. Chuck asked me what was wrong. I was trying to hide how bad things were. Since Chuck and I only knew each other for 3 months, I didn’t want to be a burden. I knew he was different and in my mind I thought for sure that he wouldn’t want to deal with something serious. He was only 19 and I honestly thought he would bail.  I just told him that I was tired and he helped me up out of the seat and we were the last to leave. I told him that I think something is really wrong.

I told Chuck what happened and he was so upset with them. We decided that it was time to get our own place. At this time we weren’t married. We did find a little trailer that was about 12 feet wide and 32 feet long. Which was a blessing because after I was diagnosed with GBS, the trailer was the perfect way to help me since the walls were closer. That little trailer was the perfect size for me to regain my independance. Which is for sure a “God thing.”

After we moved into this little trailer, I was becoming more and more tired. When my husband, well boyfriend then came home I was laying on the floor in tears. I was there for hours since I couldn’t get up. Chuck and I were engaged and we were planning on getting married on December 14th, 1980. We knew things were serious and things became life and death. Chuck could have left me there since we weren’t married.  God had a plan.

A few days after this happened, I got to the front door in order to get someones attention that I needed help. We did have a landline phone, but back then there were no cell phones. The trailer we rented for $50.00 a month was a long ways from neighbors. I got to the front steps and sat down and yelled for help. Nobody could hear my cries. I didn’t know any of our neighbors since we just moved in. I was stuck there till Chuck came home. He was stationed at Fort Hood, Texas.

When he got home, he seen me there and rushed over to where I was at. I told him what happened. He lifted me up and brought me into the house. He took me to Scott and White Hospital in Texas. I was only 17 at the time and I was a runaway. My parents knew where I was. The Dr’s told me that they needed my parents permission to treat me. I didn’t have any insurance either. When they contacted my parents, they told them that they wouldn’t pay for anything.

The Dr’s still seen me and they did the whole asking about do you drugs and they thought that I was on drugs and that was why I was so weak. The nurse told me that they also thought it was me faking the weakness and they sent me away. Chuck and I came home and I was in tears. Chuck was so worried that he got a hold of his CO and they changed his schedule. I went to the ER at a number of local hospitals and all said the same thing. Things changed at a clinic that I went to in Harker Heights.

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The Dr admitted me into the hospital because he knew that there was something serious and many have died of it. By the time I seen this Dr I was pretty much paralyzed up to my chest. I had no reflexes, my breathing was labored. I couldn’t lift my arms, lift my legs or mostly everything else. If it wasn’t for Chuck, I would have died. He literally had to lift me up and help me go to the bathroom, shower, dress and so on.

The next morning at the hospital, I had ambulance people and nurses rushing into my room. They called Chuck and told him that they are transporting me to Scott and White Hospital since they weren’t equipped for something like this. I needed special care and someone experienced. I told them that Scott and White turned me down 2 other times and told me they couldn’t help me since it had to be because of me using drugs. I didn’t smoke cigarettes, weed or drink. I have always carried a bit of anger towards that Dr because I could have died because he thought I was a druggie.

Chuck asked them if he could take me up there. He didn’t say how worried he was, but I knew he was. They said there was no time to waste and that they didn’t even know if I would make it. Within 5 minutes, I was loaded up into the ambulance and taken to Scott and White Hospital. I was terrified to say the least. I had this sinking feeling that Chuck would think that he didn’t sign up for this.

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Plasmapheresis

That evening after I was admitted Chuck went to the hospital  to see me and get answers from the Dr. Since we weren’t married and I was a minor, they wouldn’t release information to him.  Instead they reached my parents who were very bitter and tried to have my husband arrested because of me being a minor. The treatment for Guillian Barre Syndrome is Plasmapheresis and IVIG.  They Dr’s needed permission to use the treatments. My parents told them no because it is very expensive. They also told the Dr’s that they didn’t need to contact them about how I’m doing and that it was OK for them to talk to Chuck.

After I was admitted, this got worse. The Guillian Barre Syndrome was causing a lot of breathing problems. That’s when the ventilator came about. I wasn’t willing to open or close my eyes. So, they had to do eye drops and tape my eyelids closed. Because of what all they had to do in order for me to survive, that is why I now have a very detailed medical directive that includes no life support machines.

My fears of Chuck leaving me was unfounded. Even though Scott and White Hospital was almost a 100 mile round trip, he showed up almost everyday. I was 100 percent paralyzed and the hospital wasn’t going to release me because of how I was still in crisis mode. My breathing was better which was great and I was no longer on a vent. But, I still couldn’t communicate with anyone. After a month or so, I was able to talk, even though nobody could hear me. I was so excited when I could open and close my eyes. I had to do a number of things in order for me to go home.

In order to go home, my Dr’s told me that there had to be someone with me at all times since I wasn’t out of the woods. I also had to have my house approved since there were so many things that could happen in a moments notice. Someone also had to be trained to help with going to the bathroom, bathing, helping me roll over in bed. When I came out of the hospital I was a size 0 and I would guess about 85 pounds. So, Chuck had to make sure everything was ready for me to come home.  He had to also make sure that I had the means to get medical treatment since I was a minor.

Links to Informational Websites for Guillian Barre Syndrome and CIPD

 

Part 2 “Going Home” Tomorrow. 

 

 

 

 

 

 

4 thoughts on “Guillian Barre Awareness – Part One

  1. VERY INTERESTING. I TOO WAS COMPLETLY PARALYIZED WHEN MY FIRST MS ATTACK HIT ME. I WAS IN HAWAII WITH NEW HUSBAND AND MY TWO LITTLE BOYS VERY SCARY.

  2. I was a senior, 71, when it hit five years ago, starting with my hands, then my legs, not the reverse as is usual. You’re right; people don’t realize what’s wrong, why I drop things, why my fingers stiffen. I am blessed with full coverage after Medicare, so cost has never been a problem. Diagnosis was. I didn’t go to the doctor till I could no longer walk unaided. My son, who lives with me, supported me, and I had a cane. The doctor had never seen a case of GBS, didnt know what was wrong with me, and sent me for a CT scan, then to a neurologist, who recognised it immediately. By then it was several weeks, too late for either treatment that might have helped. Thankfully, I never had breathing problems, never hospitalised, eventually navigated with a cane and being close to a wall, but fell often, since I couldn’t feel the floor. My son would hear me yell, and there I’d be, on my face. He would haul me up again, so patient. Somehow, I never broke anything. Now, I can walk well, but my hands are still numb. I have increased cramping, so am back on Gabapentin. There is little feeling in my arms and legs either. The nerves have reached a plateau, but the muscles are damaged. I don’t know what will be left to me as I age.

    1. Thank you so much for your comment. I applied for disability about 7 years ago and got approved in a few months. I would still have another 10-12 yrs before I could get medicare. The insurance was the main reason why I applied. before that, I couldn’t get the tests I needed or much of anything. My husband Chuck had medical through his work, but the deductible was so high and it wasn’t enough to meet the criteria for Obamacare. I was very happy over the coverage of pre-existing conditions covered.

      There has only been 2 other people I have known here in St. George, Utah that said what you said about it being too late to use the treatments. The nuerologist that they seen and at the time was the only one that was here, misdiagnosed them. Dr. Becker sent them to Salt Lake City which is 5 hours away from me. By the time they got up there the nuerologist was shocked that it wasn’t caught and they said because of it being too long since the onset that there wasn’t anything they could do besides supportive care. When they finally made it back to St. George, they confronted Dr. Becker and she told them that they had to live with it and refused to see them anymore. I had one run in with her many years ago and she thought it was in my head. I went to Las Vegas, which is 2 hours away and they sorted things out in a matter of 4 hours and then they said that I had the CIPD variant and Myasthenia.

      I will for sure keep you in my thoughts and prayers. It is so hard when you don’t know what’s next. When people say that you that once its over with, then don’t worry. That is much easier said then done. When someone says that, I want to deck them lol.

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