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10/13/2009 03:58 AM

Hi I'm Loz

loopyloz
loopyloz  
Posts: 14
Member

Hi there, I'm new here. I would love to hear from others who have had GBS and how things are for you now. I had GBS in 1994 and after all these years still feel I need some support and hope to be able to give my support to others.

smiles and hugs

Loz Smile

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10/13/2009 09:25 AM
PicturesquePsyche
PicturesquePsyche  
Posts: 131
Member

Welcome to the group! I'm not sure how much support I can give YOU, seeing as how I was only diagnosed in April this year. Recovery is slow, but at the same time faster than most would expect. Like you, I still find myself needing support a lot. I am still not well enough to live on my own again. Unfortunately there aren't too many active people in the group, but I'm really hoping we can change that, as all of us need support and there aren't many places to find it. Again, welcome to the group, and I am here for you if there's ever anything you need Smile

10/13/2009 10:27 AM
loopyloz
loopyloz  
Posts: 14
Member

Thanx PicturesquePsyche Smile Yes I am here for you as well. Please feel free to ask me any questions. I know it has been a long time since I had GBS, I was 24 and 12 weeks pregnant at the time. My baby survived thank God and he's a healthy 14 yr old today. With much support from family and friends it is possible to stay strong and live your life.

Stay strong and keep positive as much as you can. Recovery is slow, but be patient with yourself.

Hugs and smiles

Loz


10/13/2009 10:56 AM
PicturesquePsyche
PicturesquePsyche  
Posts: 131
Member

Thank you so much for your support. It's hard for a lot of people to understand or give proper comfort/support, who haven't been through this. I'm so happy your child survived to become healthy and happy! That truly is a miracle. I am fortunate enough to have family who was/is willing to help in my time of need, and friends to help me stay strong, even if only a few. The groups here on MDJ have also proved to be an invaluable resource of comfort, support, and help. I am very active in the depression group, as that severely hightened with my illness (for obvious reasons). I think the biggest challenge for me right now is to just get through this recovery phase to get back to my life. I've always been rather independant, to a fault, and such seeming helplessness is hard for me to take. I try to stay positive, look at the good things, focus on how far I've come. To think, 6 months ago I was paralized and on a vent and in the most pain I've ever experienced. Now I'm walking, and strengthening in physical therapy, and able to care for myself and volunteer to get out of the house. Patience is a virtue I've never possessed, lol. But I try to work on that. Well, I always end up writing novels if I don't stop myself so I'll leave it at that! Smile

10/13/2009 09:25 PM
loopyloz
loopyloz  
Posts: 14
Member

YW Smile

Yeah your right about it being hard for a lot of people to understand. I have found here in Australia that even some doctors don't even know what GBS is and have found due to not having my condition treated propally that I have found that I will not be the same as I was before I got GBS. Yes I call my son Peter my miracle baby Smile. I was told at the time that a baby has never survived in a mother with GBS. I don't know now if other women who have had GBS while pregnant have been as lucky as myself.

Oh yeah that is my next step to join the depression group as I know my depression has affected my family in a negative way. It's really hard for them to understand as they are only children but my hubby is very supportive, although he doesn't understand he tries to.

LOL...Yeah your right patience is a virtue haha but it took me a long time to get it, I do still get frustated with myself, so I guess that is why I'm here.

Oh Sweety!!! If you need to write heaps, go right ahead. I'm here to listen/read rather and hopefully I can help you as much as it helps me to help. I know with writing and journaling it's great with the depression side of things, but if that don't work for you just keep on emailing me. LOL

Have an awesome day

smiles and hugs


10/14/2009 09:45 AM
PicturesquePsyche
PicturesquePsyche  
Posts: 131
Member

I didn't know that no one else had a baby survive, with GBS. Hopefully they've made some strides in that department! But you're right about some doctors not knowing about it. I went to the hospital the second day of numbness symptoms, stayed over night for tests, and was misdiagnosed with 'stress' HA! i couldnt walk when they discharged me that day. i ended up having to call the ambulance 24hrs later, and it was a few days (with numerous tests and 3 spinal taps, one of which an intern botched ... i had a headache for over a month) before they figured it out. funny thing is, my mom (who has been a nurse for many many years) knew what it was on that second day, when i called for her advice. she didnt tell me as much, so as not to send me into a panic. i was furious at the hospital for that; and then also because they kind of wrote me off because of my mental history. i thought about filing a lawsuit against the hospital, but for one reason or another i havent. as far as the depression group, i highly reccomend it!! they are a great family there. very very helpful. not sure if it's something you'd be interested in, but theres another group i joined that might be of some help, the self-esteem and positive thinking group. always some good stuff floating around there.

hope you're doing well,

allison


10/14/2009 10:09 AM
loopyloz
loopyloz  
Posts: 14
Member

Hey Allison Smile Great to hear from you again. I remember when I started having the tingles in my hands and my feet I had my hubbs take my to the docs and he said to me that I either had a blood clot or a brain tumor, but if I started to feel any worse, take myself to the hospital. Well as you can imagine I was absolutely gobsmacked haha. Anyways I did start to feel worse becase my tongue felt funny and I was having trouble swallowing so it was becoming increasingly harder to swallow food and drink any fluids. Yep well the hospital sent me home. It wasn't till the next morning that when I woke, I couldn't speak and I was totally paralysed. Hubs rang the hospital and they said to bring me straight up. Anyways it went from there and I was transferred and all sorts of stuff. You know what they're like I'm sure. About suing the doc, my mum said I should have, but honestly with the depression and everything going on I just didn't have it in me to do anything, maybe it's the same for you, you just can't bring yourself to physical or mentally deal with the grief of what gets dealt out to you sometimes. It's a hard thing to deal with when your health goes down hill. I've always said that my health is worth more than any amount of money.

Yeah I might just pop in and check out the self esteem group, thanx for the suggestion.

So how are you doing today, how's the pain going?

Bless ya

Hugs Loz


10/14/2009 10:34 AM
PicturesquePsyche
PicturesquePsyche  
Posts: 131
Member

well i think you may be right about the depression getting in the way of doing anything about my misdiagnosis. as far aa pain, i pretty much got that under control; in faxct, ive started to wean off some of the pain meds. I'll be done with lyrica at the end of this week, then i'm going to start weaning the neurontin (gabapentin), and after that ill get off the duragesic patch. so, pain-wise, everything is pretty good. if i ever have to deal with half as much physical pain again in my life, it'll be too soon. its just the mental shit im tryin hard to get together; but as im sure you know, its a constant struggle, and being temporarily disabled doesnt help either. how about you??

10/14/2009 11:25 AM
loopyloz
loopyloz  
Posts: 14
Member

Sweety I don't wanna give you any false hope as I believe everyone is different, but it's been 14 years for me now and I have recently found out that I have arthritis in my back (LOL....that could be because I'm getting old and falling apart haha) and I've been battling the fibromyalgia for years, I was diagnosed with that in 1996. Doing housework, I believe to be simple but I struggle with that, yeah just the littlest tasks sometimes are hard. But you know it seems to me that in the States the docs have got it together more than they do here. I wasn't given any real pain relief except for ibuprofen which you can buy from the supermarket, it's not prescription medicine. I've battled the old "it's in your head treatment" by many doctors and there has been times when I just have wanted to chuck it all in. I have had 2 attemps of suicide and been hospitalized once and I often feel nobodies listening. My hubs gets angry with the system now because their has been doctors that he wanted to punch out cause they said it was in my head.

So please don't misinterpret this as there is no hope because their is, I'm just still trying to find the right doc. It takes a lot of strength and courage as I'm sure you already know.

At the moment I'm dealing with bad depression, I haven't left my house in nearly two weeks and I know I have to go see my doc. The avoidance thing is happening all over again, it's time hubby got strong with me again and dragged me out, he does that for me. LOL... I call it being cruel to be kind haha.

Geez I've done some rambling lol. And you thought you could ramble on too much, I think you just met your match haha

Smiles and Hugs 0Smile


10/14/2009 11:56 AM
PicturesquePsyche
PicturesquePsyche  
Posts: 131
Member

lol i dont mind reading, i like it. you can write me a novel any time Wink as i hear more and more survivor stories, I come to realize I may have actually been one of the lucky ones, when it comes to treatment. I was taken from my hometown on the North Carolina coast to one of the University of North Carolina Hospitals, as they were more adequately equipped to handle GBS. I'm also glad my mother was there most of that first month, when I couldn't talk, because she knew what was goin on. there were times when she had to order the nurses around because they weren't doing something right, lol. she was awesome. and although it took a few weeks, they found a good medicine combo to keep my pain tolerable. it kinda sucks that i was on about 10 different meds, most at the max dosage, but i'd rather that than deal with the pain! I know some people have such small cases that they're only missing a week or two of life, but then there are also those who never recover. I'm glad that I will at least have a 95-100% estimated recovery, and that my age is on my side. I'm just dreading the possibility of a recurrance later in life. I'm not sure I could live through it again. my mom sometimes tries the 'cruel to be kind' approach, but she always just ends up being hurtful and making me cry. but then again, i know she really doesnt understand depression. someone in the depression group made a good analogy -- if you had diabetes, would you be expected to deal with it without insulin?? depression is the same way, its just in the brain instead of the body. and even with medication, other steps need to be taken because there is no miracle drug. ive recently had to up my dosage of anti-depressant, but im not really sure its working. some days im okay, and i think the meds are at a good level, but then there are other days where i just sit around, crying off and on, only getting up to use the bathroom or go out for a smoke. on those days everything just seems so hopeless and pointless and i beat up on myself for everything thats wrong with me. those are the days when i wish i wasn't such a coward as to not try suicide again. I love too well; I can't stand the thought of the people I love torn apart by my actions. I've always been the person who'd rather hurt myself than hurt others; hence my self-mutilation in my teenage years. yup see i just dont effin stop, lol, but i will leave it here for now. Wink
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