4 Years Out………..
AnonymousNovember 22, 2006 at 5:38 pm
Hello to old friends and family. Again I find the need to be here seeking your comfort and understanding.
Today marks the 4th anniversary of my original diagnosis of Guillain Barre Syndrome. I still find this time of year hard mentally and emotionally. It seems like 20 years has gone by, so many changes in such a short time. I feel like I am still playing ‘catch up’ with the rest of the world.
I am doing well. The pain is ever so present from the second attack but it is managed with medication. Lots of changes in that department with the new Part D coverage, that was a nightmare! Neurontin is off the list now. The doses were getting to high to be effective, the higher the dose got and ‘brain fog’ started setting in. John is still my pillar in life, reminding me everyday of all the accomplishments that I have achieved and supporting me thru the rough times.
I just accepted a job with the local school district to substitute in the clinics. This was fullfilling but yet terrifying. It is a good feeling to be wanted yet scary to be depended on. I am also going to be starting school again, I am finally getting the chance to get my Nurses Licensce.
There have been 3 cases of GBS in my area in the past 8 months. It was rewarding to help them and prepare them for ‘life after the hospital’.
Katie started the 7th grade this year! She is now a young woman and not just a little girl. Boys are now in the picture, along with the different types of music and clothes. Nothing to drastic yet…… She is still happy to have me around and involved so that lightens the heart.
Cameron just turned 5!!! He missed starting school by 4 days so I get a little more time with him before he becomes Mr. Independent. He is smart as a whip. Already nows his ABC’s, 123’s, and shapes. He is reading simple books with help and doing 50+ piece puzzles by himself. He is already insisting that I work ONLY at his school next year!!
My brother Eddie re-enlisted for another 4 years with the Navy. Fortunately he won’t have to go out to sea for another 3 years or so. This makes it easy for the sister that worries to much!
Not much else going on. Life is just getting busier and busier. The only regret was not making time for the forums so my early New Years Resolution is to visit more often…..
I hope all is well with everyone? You guys and gals and never far from my thoughts and will always be close to my heart…….
AnonymousNovember 22, 2006 at 8:32 pm
I don’t know what 7th grade is in America. My lass is now 13 – and I SO relate to the music, boys and clothes thing – in that order. And the lip and cheek that seems to be occurring more often – but only to me, not to others, so that is a good thing!
Angela, I re-entered the workforce about 18 weeks ago – and I agree that it is scary. But you are not alone, alright? Others feel just the same. Your boss (hopefully) knows that. Don’t panic over it, okay?
I agree, it is a great feeling to be depended on, but you are new to it, ease it slowly. I also agree that it is rather scary (on a scale to 1 to 10, I would rate it about an 8). You will probably make mistakes – that is no big deal – especially if you had seen the ones I have made! But you will get there, it takes more than a few days. Have faith in yourself, cos I do.
AnonymousNovember 23, 2006 at 1:45 am
I was hoping that I wasn’t overreacting to the job situation. All of my life I had been confident in anything I set out to do, it is strange to feel this way. Instincts are still there BUT I guess that I am lacking some of the self esteem. In a way I still feel ‘broken’, I try not to let it get to me but this time of year always effects me. I am hoping it will get better with time.
Katie will be 13 in March. John and I are dealing with the ‘attitude’. She thinks she is right about EVERYTHING and is having to deal with the backlash. I feel for her but she has to learn someway. She is into this thing called “Emo”……..It is not Gothic and it is not Punk Rock, it is somewhere in between, nothing dramatic. I am on a stiff learning curve!! I am decifering the lyrics of bands called ‘My Chemical Romance’, ‘Panic at the Dicso’, and ‘Red Jumpsuit Apparatus’. Luckily the boys are just friends and she is having quiet or private crushes, no boyfriends yet
Cameron is still such a treat! He has the sweetest, kindest soul of anyone I have ever met. And I don’t say that just because he is my kid!!! He can read me like a book. If I am having a bad day he will just sit with me and somedays he will try to rub the pain out of my legs. Other days when I am just tired he will find quiet things for us to do together. When I run low on hope he fills it right back up………
So how is Sarah? What kind of job are you doing? How is life treating you? It is so good to be back. I knew this is where I needed to be!
AnonymousNovember 23, 2006 at 9:10 am
Angela, soo nice to see you back! glad to hear you are a substitute, what an accomplishment! i’m sure you can handle anything that comes your way. i also have a 13 year old daughter, in the 8th grade now, she’s my angel, a little attitude and getting more independant everyday. i also have a son who is 8 and in 3rd grade, my little man, sweet as sugar and very bright(uhm, wonder where he got that from:confused: ) both of my kids give me the jump start i need everyday, especially my little man, very compassionent, always giving me hugs and asking how i am, brightning my gloomiest days. they are a blessing.
hope you won’t be a stranger. Take Care!:)
AnonymousNovember 24, 2006 at 7:43 pm
GBS was the most terrible thing that happened to me. I got the disease in April 9, 2006, the day before I was in my bicycle with my family, next day I could not even stand up, I could not believe it, I was due to go to Italy next day, thanks God it happened before my trip. Anyway, it was horroble. sorry for my english, but I am a Mexican and at that time I was living in Krakow Poland for my work, I had been living there for 3 years, as an expat, life is easy and you enjoy the best, but when I was due to go to an appointment for my next assignment, thats when it happened. We were having family visit in Poland, I was riding my bike and discovering new trails, and suddenling next day I could not stand, at the begining I tought it was just pain, because I was trying new trails, but later in 6 hours, I could not move, the ambulance needed to go to my home and at the hospital I was diagnosed GBS. When I was at the hospital the company I am working for, send me some information related to the disease. I just put them in the drawer, I said, If there is someone that will help me that will be God. Next morning to my very much surprise I could not even move, but my right hand and only rested in the chest. Then I realized that if this was the case, it was for a reason. God loves to be praised, I was going to learn that. So there I was, the scariest thing came later in the day, when they needed to open up my neck and stick a device to change my plasma. I was so afraid, that when I was at the operating room, I did not know how to handle it. So I remembered a passage in the bible “revelations” that describes the face of Yeshua (Jesus) like a bright sun, I concentrated myself on that, I suddenly evevrithg was finished, no pain and nothing. We called on the phone a believers friends to ask them to pray for me, the first night I caught developed in me. I could not cought, my nerves did not responded, the doctors just watched and told us to be alert and call them if more complication arised. Just as a note, the Polish hospitals installations, not equipment are well 30 years old, but the attention of the doctors and nurses if first class in the world, but you believe what you see, and it was scary. Anyhow a I started my plasma treatment, by the 3rd day there was a holiday in Poland and doctor where taking the weekend off. I told the doctor, that by the time he will return, he will see great changes in me. Aside he told me, that he admired my positiviness , but that I should not be very enthusiastic. Anyhow we proved him wrong, thaks God, on Monday I was walking, going up and down the stairs of the hospital without assistance. All the staff was surprised. In 18 days I was out of the hospital and due to Copenhagen for a Benny Hinn crusade, we stopped in Berlin for sightseen, which to tell you the truth I was not able to walk for a long period, as the same as the first two days in Copenhagen, but later we traveled for a Jewish Machol dance seminar in Hungary, where I danced my body off. It so good to be able to move without assistance and supervision.
I thanks God, the hospital staff and my family for all the support.
How do I think everthing started:
1. Living in a foreing country, but I have lived there already for 3 years.
2. I was eating KFC (Kentucky Fried Chicken) every weekend, by the way my family always told me It seemed to be undercooked, which I never believed.
3. Poor diet
4. Believing that you own your life
After the fact, I waked up for at least 3 month feeling my arms weak.
I moved to Italy, I changed my diet, here there is no KFC, but anyway I do not eat pasta and pizza but just once per week.
I have joined a swimming class twice per week
and my post symptoms completly disapeared.
So my recommendations are:
If you are or have been thru GBS:
First focus in God, there is no one else that can help you.
2. after the plasma treatment, you will feel much, much better, every time you go.
3. do not be affraid to go back to your normal life, we are no supposed to be in be and without moving, it takes time, but focus, and you will do it, there is no pain, just walk, run , dance, etc.
4. change your diet, I think that the secret is there, do not eat fat, high proteins like pork.
5. Change your habits, life is one, and should be wonderful
6. Love GOD for the new opportunity he just gave to you.
My life has changed so much, that I will never go back to were I was, I have learned my lesson, and God has been good. Why did it happened, probably because He loves us so much, that some of us, have a hard head and require an special treatment.
Anyway, I hope you the best if you are going thru GBS or you have been. I count myself as a pride winner. but I could not done it myself without God, do not give up. Focus, He is always waiting to be called, no matter what you have done in the past. If He did it for me the lowest of all, you should expect the best for you.
Love you. Hope that my story helps you, to stay strong and believing, He will just do it for you.
Aftermath. I am living now in Italy for a period of 3 years. I am better fit than before, stronger, and happier. I am do to go to my home country in 7 days and tell everuybody what happened to me.
I bless you all: Yevarejeja Adonay veichmereja, Adonay Pana veleja vicuneja, Isa Adonay pana veleja veya sem leja Shalom.
Just a powerful Jewish blessing.
Ciao. I you want to contact me feel free.
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