I’m Back on this forum once again

I need to know a few things such as cost, where it is being held and is there rooms there that we all are going to have. As I already have to start saving big time for this as I am on financial assistance I am needing prices. Is there any discounts availible, so on and so forth. I just am trying to get things together I have a friend helping me out with the money and is going to come along with me to make sure I am OK and everything goes smoothly, he is really helping out that way.:confused: 😉

Physically I still am having problems walking . They have me do it in the paralllel bars but half the time I don’t get much farther then 2 lengths on my good days. I did a lot better before my foot spasmed up. I am wondering when my foot spasmed up like that is that a relapse or just unforseen cercumstanses. Has any one else had spasms like this? Just a question…

I am doing fairly well other wise though I think I could be tiring myself out with the amount of activity I have started picking up. So such is life hope all goes well for all of you and praying for you who are struggling as things do get better eventually.

Sonja:)

Still working on the parallel bars got to about 2 and a half lengths. My knees keep bent and I have a hard time keeping my body straight while walking right now. They said I am doing better in regards to the lenght between the steps but my legs are very shaky still and it is a lot of upper body work that is holding me up. I have to have about 2-3 people helping me. This time relearning to walk is soo much harder. I still have my foot spasm up every so often I cannot gaurentee that it will not be in spasm. I look forward to the good days. I have to see DR Guthree from the Glenrose Rehabilitation hospital on Wednsday and here I am unable to walk ar anything and I feel like I am going to get it as he hasn’t seen me since my foot has been in spasm. I hope I don’t have to go back into hospital or anything like that.

Hope things are well for everyone else my prayers are with you.
Sonja

My friend has taken off and I haven’t heard from him for about a week. As he has no phone number I have no idea whats up. I am probably going to have to take the Greyhound that is a two and a half day trip plus come up with the rest. I called my mom and she won’t help out right now as she doesn’t think I could do this trip on my own. I plan to show her wrong. She said she will moniter my progress and that I need to be able to handle my own luggage and to handle the trip physically. I guess I can understand her point but I really want to go so I will do what I have to to get there. It will cost approximatly 400 dollars for the greyhoung alone and then there is accomadations and the cost of the conference and food. This of course is in US dollars which means a tad more money. I know I can save at least 600 dollars canadian. If I get my mom to help I should be able to handle it.

I am trying to improve on my skills in physio and that is very difficult and this is one thing I know I need to work on to get up to the point to be able to manage the trip and I am putting full effort in. I hope there is some discount rates, if any one has any ideas on cost saving ideas and things I can do when I get there like transportation to the site and so forth please let me know. I could use all the help I could.

The reason is because he just frauded me for 700 dollars through giving me some checks to cash and they both went NSF on me:mad: . I think he knew what he was doing and he played me for a fast one. This is going to hamper my saving. My mom just said that she would moniter my progress physically and if I am able to handle luggage and be able to make the trip she will help a little with the finances but right now she doesn’t think I am ready. That is why I am going top work really hard in physio to improve my skills. Call it motivation. I am going through a rough time in trying to save but I will save despite all of this. I am reporting him to the police and I still have not heard back. I think I might sell my art work that I have done and that might help earn money towards the trip. I just have to find a market for them. I hope that my money problems will improve and I will not make anymore stupid mistakes like this last one.

I am getting a little better as I am working in the parrellel bars, no where near walking with a walker but that will come in time. I am determined and I think that has a lot to do with it.:D

Hope everyone is well

Sonja

I did good in physio and they were going to start me on the stand up walker but they couldn’t find it, so they had to use my 2 wheel walker I didn’t get very far but I did get 3 times down the parallel bars and did everthing else I needed to do. I am pushing my way through. I am having a hard time getting up in the morning that seems to be the only difficulty.

hope all of you are doing OK
Sonja

I talked to my mom and she said that she would help out only if she got a note from the doctor or was able to talk to him. My psychiatrist is OK with me going and so I think things are going to go well. I am getting along physically in physio and improving steadily. My mom is coming to see me on monday. My psychiatrist though is going on vacation for 3 weeks thats is OK. He is more concerned that I pay off the debt to money moart and get that under control. I will be doing that the best I can. I am trying to do more things independantly. I try to use a cane and walk with it and I can go short distances occasionally with it. It helps with stairs now and then but not always then I just resort to going up them on my butt and the same thing going down. All the things we learned as children going up and down stairs on our butts, well it works.

Hope all of you are doing OK, Keeping all of you in my prayers
Sonja

I am walking in physio short lengths with the walker ass I can. The only thing they keep on me about is the fact I have a hard time standing up tall. I also have a tendancyto look down so they have to have a mirror in front of me and I then will have my legs cave in on me after a while, but it is progress, which I am glad of. I am trying to save up some money I haven’t got a lot yet mabye 20 dollars but next month I should have more to put aside. I have to be able to show an effort in this area. What a pain in the butt.

Hope that all of you are doing OK and I am praying for you all.
Sonja

Well in physio I have come to find out my difficulty. I partly is due to the decreased sensation in my feet. I am unable to know when I am fully on my feet. The physio therapist keeps telling me to not lean so much with my upper body but to push out with my hips. Then she asks me if I can feel the difference. Which unfortunatly I can’t so it gets very frustrating. So I realy on a mirror and on her judgment to know whether I am doing it right. I probably look like some kind of side show act. I am working on succeeding as I am doing all this on a walker with 2 persons assisting and anotheer pushing my wheelchair behind me. It is quite a procession but I keep working on it. I also work on my own standing up and using a cane and trying to monuever around probably not quite like physio would like me to stand up. But I think every little bit helps.

Still planning to go to the symposium in november and aam hoping to see you there.

Sonja

Well I am doing OK in physio I am able to walk further with the walker and can walk pretty hard. I also have started with the bike but the first time it really hurt so my physio therapist told the aides to turn down the traction as it was to hard right now. I am doing an awful lot and I think it might be too much but I am not sure. The reason why is because the bronchitis that I have had now for 16 months is getting worse as last night I was pretty well awake all night and had a whooping cough. If it wasn’t that I sat up trying to make it stiop and that still didn’t help. I haven’t been able to sleep for a long time due to severe back pain. I told my physio therapist and she suggested that she will try and get me machine of my own as it worked while I was in phsio. So this is something I am really hoping that I can get as long as it is covered I am sure I will get it.

I am looking forward to seeing you all at the symposium.
I am keeping you all in my prayers and hope you are doing well.
Sonja Fjeldstrom

I am now able to walk further on the walker only my knees start to buckle after a while and they make me have to stop. I keep on trying to walk even on my own and try the stairs on my own. Going down the stairs are the hardest and most times I have to go down them on my butt. Other then that things are going well. I am saving up. I sold one of my paintings for 75 dollars and so that means that it is going to make it get easier a little to get some extra money. I hope to sell some more paintings as it really would help me get money I need to get to the symposium. So all in all my painting and artwork is helping me get some money as well as it being therapeutic for me so this is pretty cool. Hopefully my mom will help out as well. She wants to wait and also she wants to know how much this trip woll cost altogether.

Hope that all of you are doing well,
Sonja

I’m getting to walk further and aam trying to get further each day. I am going up stairs yet when I mentioned that to physio they freaked out so I told them I won’t do it any more. So either I will take their advice or I will have to go uo and down on my bum. It kind of sucks when I am trying to do things on my own and they don’t like it. I guess because when I do try on my own my posture isn’t the greatest and physio probably would not approve of the way I am doing it. I just thought at least I am trying and and that at least is benificial.

I am saving up for the symposium and have almost 200 dollars saved. Which is pretty good. I also have a new boyfriend he is close to my age and I have fallen in love with him. He is helping me out with money as well. He is giving me about 20 dollars a week. As we are both on AISH we do not get very much money and it makes things difficult for all of us. We help each other out. He just sprained his ankle at least that is what he says I keep telling him to get X-RAYS as it is still really swollen and whenever he puts weight on it he says it feels like a knife is going right through it. So I hope he listens and gets it looked at and X-RAYed. I am looking forward to this symposium and hope that it all goes well and that I can go. I am confident I will be able to go as long as things keep working in my favor. It is sure hard to raise money but if I can sell some paintings and save money I hopefully will be able to go.

God bless every one
Hope you all are doing OK and that your recovery may do OK.

Sonja

No I did not recieve your e-mail. I did though notice it as soon as I got on the website. I am going to require my mom to help anyway to reserve the room. I live in Edmonton Alberta Canada, If you are wondering. It is sure going to cost a lot but I think I could get my mom to pay for the hotel room. Because I have saved money. My boyfriend said that instead of 20 dollars a week he will give me 100 dollars a month. I can only save 80 a month but I got enough pretty well for the bus ticket. That means 2 and a half days on the bus with having to transfer twice. This for me is so exciting because it is an adventure and it is like a vacation and I haven’t had a vacation since I was 16 years old and I don’t even know if it was one at that. This is my first time out of Canada and I’m excited.

My walking is coming along I still have a lot to work on but it is coming along. I am doing as much physio that I can so that I am capable to take care of myself on this trip.

My boyfriend is doing just fine he just had a severely sprained ankle and is much better now.

Hope everyone is doing just fine keeping all of you in my thoughts.

Sonja

My money situation is going to be a little tight but I know that I will be able to afford the bus ticket and the symposium. At the end of the month I am going to get a money order and send in my forms. Hopefully my mom follows through. I need to talk to her again, To make sure that she has it for the right amount of days and the rate plan with the Guillian barre Syndrome when she makes the booking. So that the rates are correct.

Physio is coming along my back pain seems to be acting up majorly to the point that at night I can’t sleep very well. Walking wise I am getting a little better but my right leg is weak and likes to give out on me. But I still keep at it even after and just give it another try. I am tired of my knees buckling but I guess I have to allow my body time to adjust to it.

Hope to see all of you at the symposium, and for all of you even those unable to go for any reason I wish you all the best.
Sonja

I am really glad that you are still willing to have me. I am really grateful.
I am going to be going come hell or high water. The greyhound has raised the price of the ticket to $375 and that took me by surprise where it was 225.45 and now it is this much I no longer can have 14 days in advance I have to pay full fare. This is becomeing a pain in the butt.

Liz, Could you tell me how much you would like to have for sharing the room so that I can tell my mom. She still will pay for it. I think she might even then help out with the bus fare then to because of the cost being less who knows. I am hording pennies like a miser but that is fine.

Physio is coming along slowly. My right foot doesn’t hit the ground uniformily and then my knee buckles and then they tell me to sit down. I keep at it though. One of these days I will walk.

Hope everything is well with everyone and love you all,
Sonja

Liz,
I will still pay the share of the room and would be more then happy to let you have the parrot rock. You can have that just for the fact of your willingness to share a room with me. I do my art work for the sheer fact of it being a outlet for me to express myself. I enjoy doing it. I couldn’t have gone on some days if it wasn’t for my art. A my ability to play the piano is impeded due to the lack of being able to use my feet I am grateful my hands are functional enough for me to do artistic works of art. I find this so much greater.

My doctor keeps at me about not being on a walker yet. This is because I used to be on one and then my right foot went into a muscle spasm for 2 months and now when I try to walk it is like my legs are jello. This is hard as my right leg will give way on me. I keep trying as I know that one day eventually that all the hard work will pay off.

Hope that everyone is doing well I am looking forward to this symposium and meeting as many of you there. Take care,

Sonja:)

I am in Grade 8 Royal Conservatory and I can play a few pieces without the sustain pedal but there are very few pieces that I can play. It is discouraging to play the piano. At least with painting and doing the pastels I have more success with it. I enjoy my artwork and so do others who see it. They say I have a talent. This for me is very useful, I enjoy doing it.

My physiotherapist redid another assessment yesterday and then he told me that I have to have more intensive therapy as I am not getting very far and that I need to get farther other wise I will be wheelchair bound for a long time aand I could go down hill. I am working as hard as I can and it just dosen’t seem to be enough. My right side is weaker than my left and my back is really bad. I am having back pain to the point that I can’t sleep and it is affecting me really bad. I am fatigued and having a hard time trying to focus and I am just forcing myself to keep going. My lower back is really my worst night mare Ikeep asking if there is any kind of lumbar support I can have for my wheelchair and what I can do in bed. So far it just is a bunch of paperwork and jumping through hoops. To get lumbar support for my wheelchair I have to go through AADL again to get it and have it approved. For night time they think a “Tens” machine would help and to get that I have to have my doctor write a letter saying that I need it and then have that given to my AISH Worker to have that given to her boss and have that approved by her, if it gets approved. So the waiting and paperwork begins.

I have payed the money for the symposium and mailed out my appication. Now all I have to do is some how come up with the money for the bus. The fare is higher than I had first been quated and so I am going madd trying to figure out how to round up the money. I have budgeted it out and it comes up to about 50-75 dollars short. Though it would be OK if I could pay it right on the day, but that would be rushing it, and I don’t even know if that would even work. So I will probably tell my mom how much short I am and then also get her to give me the money for the hotel room at the same time. Then I think it will work out OK. Things are going to work out I am sure of it. My mom wanted to have me to save up the money as best I could before she’d help out and I believe I did and she should be proud of that.

Hope to see you all there,
Wishing you all the best,

Sonja

Physio has now made it that they are wanting me to go for the next 3-6 weeks for intensive physiotherapy. That means I have to go everyday and I don’t like this as I can no longer do some of the things I have enjoyed doing. They made me sit down with my psychiatrist and said that the rate I’m going I will be in a wheelchair forever even though I have been working really hard.

I’m looking forward to the symposium with everything I do. I get GST next month and I am also getting some money from my boyfriend and that should pay for the ticket for the greyhound and I will be purchasing the ticket then. I am so exited about this trip and that is keeping my hopes up.

Hope everyone is doing OK,
my thoughts are with all of you
Sonja

I have no camera to even take any pictures of my art. I would love to display them but I just am unable. In regards to physio they are now working me more then ever. I have survived though the first week of intensive physiotherapy and I may be able to take my walker home on monday. I have had quiet a difficult week. My boyfriend broke up with me over voicemail aand told me that I was not to call him or to try to get in touch with him at all ever again. And on top of that he left no explanation why he was breaking up. So I am in a little bit of shock.

I have to shell out more money to go to the symposium as the ticket price went up from $374 dollars to $399.10. I no longer am going to get any help with expenses from my boyfriend so my mother is going to have to help me out. I talked to her and we are going to do the best we can. She doesn’t get paid though until the end of september. So things are getting tight but hopefully things will turn out OK. SO that is where I am at hope that every one else is doing OK. I aam working on it.

Sonja

Liz,
My full name is Sonja Fjeldstrom. That is what you can leave at the desk. Also I am arriving at Phoenix at 7:30 AM in the morning and am planning to go to an AA meeting before going to the Embassy Suites Hotel. I should be there by around 10-11 AM. I am also going to have my cell with me so if that would help let me know and I’ll e-mail that to you.

Physio is frustrating right now because my AFO that is custom made is not helping anymore and is needing to be adjusted and it is probably from increased walking. Right now my foot is on my right side is inverting and my knee is streaight yet when I make it that my foot is straight my knee turns outward. I am scared I am going to wreck my right knee. I already have aa bumb left knee that I had surgery on I don’t need my right on to go as well. This is so frustrating because the closer I get to being more independant something happens physically.

On the lighter side I just finished buying my bus tickets to go to the symposium. I thought it was going to be 399.10 but when I went to buy them they said “Do you realize there is a 2 week advance ticket rate for this route” I said I didn’t know but I would most definatly take it so the total came to. Daa taa daa taa daa $225.00. So I was so pleased here I was going to be shelling out 400 bucks and my mom didn’t have all the money and I was going into my tiny reserve only to find out it was this amount. I was so pleased. Now I just need to get my travel Insurance which costs 38 dollars I called and got the estimate but I was told by many people to not buy it till when your almost gone. Then the rest is to arange the buses to have a lift bus on the route I am taking Canada’s is cool as they can do it right now. But I am frustrated because the U.S line they say I have to call7 days in advance and not any later or earlier. It is frustrating. But I have everything pretty well all together. I am really happy with this.

Sonja

Well my AFO has been fixed to the extent that my foot doesn’t invert so much. I am really working hard at getting my walking to look right my gait is the hardest to get partly because of the customized AFO. I have a hard time when I concentrate too much and I don’t seem to flow too much. Currently I am working on this. My wheelchair busted temporarily and I just got it fixed yesterday as my castor cracked half of the way and the wheel on the castor came off of the rim slightly just enough for me to feel myself going clumping all the way down the street as if I was in a very racky terraine when in fact I was not. So now I have 2 new castors and 2 new big tires and 2 new brakes. I feel like I have a whole new wheel chair yet I don’t.

I have everything packed to go pretty well for the symposium and am all ready to go. I have just enough . My mom did say she was going to give the rest of what I needed at the end of the month. So I should be OK.

Hope to see you all there I am really excited and can’t wait . I am counting down the days.

Sonja

I am arriving on the 3rd. I might actually be there sooner as I cannot get a ride from the Greyhound station to the meeting I have to probably meet them at the hotel. I will most likely have to take a taxi. Which is a half an hour ride to get there. So I might get there by 8 AM The AA meetings I was told run every 2 hours so I will get to go to one of them hopefully before the check in time starts. I will be meeting you and I will make sure I have everything in order.

Physio has been going OK since my AFO got fixed up and I am doing better as I go along.

Sonja

I arrived home to snow, lots of it. The weather was terrible for the next week. The snow was really bad. The snow is piling up and I am still dealing wwith pain caused by the trip and the pilianital cist. I got it checked out when I got back andd the doctors said the cist was still deep in the tissues and had not yet reached the surface. So he wrote a prescription for antibiotics and T-3’s. I am in an incredible amount of back pain from the trip on the Greeyhound. I am finding it causing my ability to walk harder than it was before. I loved the symposium so right now the pain is worth all of it. I will definatly go again and I might choose a different mode of transportation this time. Mabye I will take the train who knows.

Loved meeting all of you who attended and got to know so many of you. Aall those on the forum here I got to meet face to face , this meant a lot to me and I am glad you were able too come and I am glad I wass able to make it myself.

Sonja

😮 Crazy weather and I am feeling sick and tired and colder than ever. I have to brave the weather even when it gets to -36 degrees celcius with wind chill the snow is piling up and things are getting harder to moneuver around in my wheelchair. I really don’t know how much more of this I can take! I just want to curl up in bed and not have to get out of bed for the rest of the time it is winter. I think it sounds quite wonderful to me but then I wouldn’t go to physio or painting and drawing, or work at the green house or go to meetings or volenteer or even being able to get to a computer to go on the internet to communicate with you. I am coming down with all the bugs that are going around here it seems. I got some kind of stomach bug and I just feel rotten and have no energy and the most I want to do is sleep. I could sleep all day the way things are going. Physio is going OK and I am coming along with my walking with the walker it just gets frustrating through out it all.

Hope all of you are doing OK the days are OK I always wonder if I’m going to make it home each day safe and sound as the number of accidents on the roads are incredibly high and the road conditions are really bad and I take my life in my hands each time I go out but life must go on. At least that is what I say to myself to motivate myself. I don’t know what all of you do to get your motivation but I still hope the best for each of you and I miss each of you very much. All those that were at the symposium I just want to let you know that things were wonderful there getting to know each of you and what a rude awakening to come back to the freezing temperatures and all the snow I would send a picture but I don’t know how unless someone has text messaging on their cell phone I could send a picture that way. Take care every one and for those who also have to brave the cold good luck.

Sonja

Snow, snow and more snow. The temperatures were off and on bad and really bad. I’ve had a couple of days where I’ve stayed home so sick I couldn’t even lift my head off the pillow for the magority of the day. I don’t know if stress is a factor. The staff at my group home tht day was really rude and she yelled at me all day. I need to do something about this situation because it is becoming emotionally to much for me, especially when I am sick. I am not feeling well still but am leaving the house as this particular staff is still working and I can’t stand to be around her especially when I am sick.

Physio is going OK I am working hard and my walking is coming along and hopefully soon I will be on my next step. I do my best every time

I don’t drive as I haven’t got a cr or a drivers liscence or a learners liscence. I made a decision a long time ago not to drive. Right now I take DATS Disabled Adult Transport System, Where they have lifts and they pick you up and they pick up a bunch of other people not the most speediest form but they take you door to door. And they use a bus and it doesn’t get stuck in the snow and their drivers are probably the safest there is round.

Hope all of you are doing OK. The weather here is supposed to improve this next week. So I am looking forward to that.

Sonja

My Christmas I decided to spend at home. My parents house is in the middle of renovations and this makes things a little tricky as the only working bathroom is in the basement but thanks to physio I have learned how to do the stairs. I am eshausted right now as I have been on my feet way too much but things I hope will resolve themselves. Christmas went pretty good though and I am doing pretty good. I haven’t been able to access the website for a long time and I even am trying to do it on my cell phone so that I can put pictures in but I can’t get it past the password I’ll keep trying with my cell phone mabye one of you high tech people can tell me how. I must be doing something wrong. Though at the same time on the computer it wasn’t accepting passwords either as the site was having problems I’ll try again.

Hope everyone had a good Christmas and I hope you have a good new year.

Sonja;)

I thought i could go to the symposium in Canada but miscalculated the fact that I had to borrow money just to go to last symposium. So I cannot go unless some twist of fate allows me the resources to go. Other wise it will be the one that is international inanother year. The physiotherapists think I have a DVT and I am currently witing in the waiting room to be seen so I am keepng this quick I miss you all and will hopefully get back to being more regular with my responses.

Love you all
Sonja

So far in my life physio therapy has been hounding me about losing weight and also have been after me on practically everything. They just gave me a 4 wheeled walker which they want me to start using which is now going to be the next step in my recovery. The only thing is I am unable to go up any kind of ramps due to my AFO’s as they are stiffer then all get out.

In the work I do at the greenhouse I used to work only on wednesday and they came up to me and asked if I could work an extra day as they have never had the filing system as well done as it has been since I came and they like my work. So now I will be working mondays and wednesdays as to get mondays off I had to get my psychiatrist to approve it before physio would approve it. I get alot of exercise done in the greenhouse.

Things are busy as always. My grouphome won’t allow computers and right now I’m in a cyber cafe and paying for the time I spend on the computer. The libraries have internet but to get to use them is nearly imposible as they are taken nearly all the time.

I am nearly finished paying off my debts except for the fact that I ran up my cell phone bill and got cut off. My next cell phone I will get is going to be a pay as I go phone as I now have no credit. Such as life. I am going to start saving money as soon as the debts I have are paid off. they are going to be paid off at the exact same time which I think is pretty cool. I kind of wished I could of gone to the Canadian symposium but life doesn’t always work out.

Hope you all are doing OK

You all are in my prayers

Sonja