I am back online
AnonymousSeptember 1, 2007 at 7:13 pm
Its been a long time since I’ve been able to get on. I might be able to get on the internet once a week or so. So I will be able to connect up with you guys more often.
Whats been going on with me is that my knee has been turning inward and I require wearing a zimmer brace and my family doctor who is kind of new is really thourough and it is taking forever to get an appointment to see an orthapedic surgeon. As I have had knee surgery before I know whats instore. This is because I was just about healed from the knee surgery when I contracted GBS. I don’t know if this why my knee is acting up know or not. The doctors in emergency who first looked at my knee this past time were mentioning something about GBS being part of the problem with my knee. If any one else knows anything about this could you let me know.
My feet and 2 inches above my ankle are still paralyzed and I still have no feeling or movement but the AFO’s are working, I also had my shoe raised by 2 centimeters because they finally discovered my left leg is 2 centimeters shorter than the right. So I no longer limp and it helps relieve some of the pain I have had in my lower back and hips. It is going to take some time for that to fully go away I think because this has been going on for so long. I have gained weight and require a new wheelchair and it is right now frustrating going about the process of getting a new chair but it will happen and I know it willl happen for sure.
I have been thinking lots about you guys and hoping all has been well for you.
P.S. I have been doing art and have sold 1 painting for 100 dollars and I have 2 others finished now one I am going to sell for approzimatly 300 dollars and the other will be about 150 dollars. So there is great things happening there. I also work 2 days a week in a green house for 1.50 an hour in a vocational program and it is wonderful because they accomadate me and my needs very well.
Love all of you guys lots and prayers for you all,
AnonymousSeptember 1, 2007 at 9:40 pm
Sonja girl ~ it is so good to hear from you! I’m so glad that, for the most part, things are going better for you. Must be about time to prepare for the frost and snow up your way 😮 What are your living accomodations now? Do you have anyone who is being a personal help to you? I could come up with lots of questions but you let us know what you want!
I often think of how brave you were to try to make the trip to the symposium . . . Hugs and more hugs 🙂
AnonymousSeptember 1, 2007 at 10:53 pm
I live in a different group home now as the last one was really not good for me and now I’m in a new one that is tons better. Still using the wheelchair but amtrying to also be abulatory somewhat as well.. It’s difficult when the legs just don’t work quite like you want them to. I have many friends and am now able to go out for coffee with them and I feel less isolated and more connected as they are willing to drive me places and then I don’t have to rely on DATS to get around because it is a pain in the neck to have to book every trip and have no spontanaiaty. I have just started oing out with this one guy who is one of a kind and he treats me like gold. I just wish I could just walk without aids. it would make my life a little easier because to do anything I have to take them off and on all the time and it is quite time consuming. Other than that I am doing really well nice to hear back from you…..
AnonymousSeptember 2, 2007 at 2:20 am
Welcome back to the forum family.
I read your posts with great admiration and respect for your optimistic personality with all of this GBS crap. You are going through soooooo much BS……………yet, you are a “real trooper” in dealing with it. What an inspiration you are to ALL of us!!! 🙂
God bless you and may everything that is good in life come your way.;)
AnonymousSeptember 2, 2007 at 6:01 pm
With my knee and the fact that it is turning in and I did have previous surgery. But that is not what I want to know I went to the hospital this last time when it first started to turn inward and they said something about GBS and they were talking in doctor talk. As it was a resident and the teacher doctor. Does anyone know what they might be talking about in why my knee problem is related to GBS. I don’t see a connection as I had surgery previously and it is just about the same thing now.
AnonymousSeptember 2, 2007 at 6:40 pm
Hi Sonja, Welcome Back! It sounds like You are a Budding Artist:D Thats great that you are able to sell your art work, and work in a greenhouse also. Hope to see some pics of your art work on here soon.
I came down with gbs 10 days after my knee surgery in 05. The only thing I can think of that they might be talking about is the fact that you can’t feel if your muscles are taught, if they can signal your brain well enough to tell it when to stop the forward motion of your foot/lower leg. So you don’t go and hyperextend/flex your knee when you take a step. Thats what I was told by my ortho. Although I had been hyperextending my knees for many years before my surgeries and gbs. What type of surgery have you had on your knees? My ortho told me I went through the surgeries for no reason, my knees looked fine to him-of course he is also looking at them 2 years after the last surgery was done(3 in all), so I’m not sure I can agree with his dx completely. Sounds like you have a Prince for a friend, those are few and far between now a days. Take care and happy painting.
AnonymousSeptember 2, 2007 at 9:48 pm
I don’t remember what it was called but they took a tendon and crossed it over my kneecap and then put a pin in to hold it in place. This is because my knee cap was free floating. I hope this info helps. I have had knee problems since adolecsence. where my knee’s are weak. Thanks for your info.. I don’t know if that is what they were talking about.
AnonymousSeptember 9, 2007 at 12:46 am
Last tuesday my Grandma died. So I am writing to you guys from Three Hills Alberta. The funeral was today:( . I am grieving right now. and it is hard even to do physio. This is because my emotional state is all over the place and I don’t know when or where I am going to burst out crying. So I have decided to do a portrait of my Grandma to help me grieve and then I will make prints of this and give them to all my relatives and they will have to frame them.
Hope you all are doing well. My prayers are with you as I think of each of you.
AnonymousSeptember 14, 2007 at 5:39 pm
Well I got through the funeral , though emotionally I am all over the place and my psychiatrist is still on vacation and it really is a bummer as I really could of used some support from him. He was not there when I found out that my Grandma died or when I got back from the funeral. I am almost to the point where I could use a brief stay in hospital just to get over this hump in my life.
I am getting a new wheeelchair this next wednesday a trial one as I have outgrown the last one. I keep gaining weight and I can’t lose it for the life of me. I have tried everything I know of but nothing helps. Physio are telling me I have to put more pressure on my bad knee as I will get arthritis in my right knee if I don’t watch it. I already have a little arthritis in my left from my previous surgeon, but my left knee is super sore now a days because I am doing to much with it.
I still haven’t heard anything back about the surgeon and when I am going to see him. That is the most frustrating part as I just want to know a date and time of when it is going to happen:confused: . I just hope I find out soon.
Hoping all of you are OK and keeping you in my prayers,
Still could use some more input into why my knee relates to GBS.
AnonymousSeptember 14, 2007 at 6:05 pm
Sonja dear, I am so sorry. It is so very hard to lose someone we love so much. Here’s some hugs.
As to your knee ~ my guess is that the nerves not “talking” correctly to the muscles and ligaments has caused some atrophy. That would be enough to make the knee not work as it’s suppose to. I’m sorry for this added stress. Try to smile thru your tears, remember that your GBS family cares and keep coming back to let us know how you are doing.
AnonymousSeptember 22, 2007 at 1:51 am
I am grateful for your words of encouragement. I am dealing with this mourning thing and it is taking its toll on me both physically and mentally. I have been trying to keep busy to ward off depression only to almost run out of steam. So I took today off because all week I had people saying I wasn’t looking well and looked really tired out and should see a doctor. I knew that I had to take a day off. So today I slept until 6 PM only because I had to wake up at that time. I realized that depression being a hazard is one thing but burn out is more dangerous to me espesially because of the fact I have GBS. So I have to find a way to do something my life to make it less demanding upon myself right now especially since I am grieving.
I will keep praying for all of you thanks everyone for your prayers and thoughts for me as well.
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