corina Posted March 28, 2005 Report Share Posted March 28, 2005 To be honest (finally), the reasons why I didn't rwrite much i the last few months are the cognitive trouble (it took me so much time to find the right words, even in my own language, and use my dictionary) and because I was so very, very disappointed in my neuro (although I could understand him). He told me that there was no use in coming to his office anymore because he couldn't help me any further. That's very honest ofcourse, and I always appreciate honesty VERY much, but by saying we tried everything that was on his list I got scared and disappointed. Also, that day my PT (who I love very much because she never gives up) told me that she couldn't help me anymore and the only thing left for me is going into rehab. For at least six months. Until that time she will treat me (as said, she never gives up on me) but if I don't go within a certain limit of time, it won't be necessary anymore (meaning that it won't help anymore). I really didn't know what to do: I can't just leave my children and husband!!! My husband works in shifts (nights also), my mom and sister live in another village (they both have a job) my mother in law is in a nursery. I'm trying to relax but it sure is difficult even thinking of it. So I talked with my familydoc (who I also love because he never gives up on me) and he found me a new doc in Amsterdam Medical Center. I remember seeing his name here on PP or NDRF (forgotten) but can't find it back. The good news is: I'm seeing him on April 12th. So my hope is set on him, I really hope he can help me improve so that I finally can get out of my wheelchair and live my life again. If not I will get used to that in the end and I WILL do the rehab although that will be very hard on my whole family. Well, I'm glad to have told you because I felt so very guilty not being able to help you much. There were so many new people (I'm still reading) and there were so many others who could use a boost!!!! I'm sorry, I DID think of all of you although I didn't write. I'm sorry to have been so long, but it really cleared my mind!!! Thanks you guys, for listening,Corina Quote Link to comment Share on other sites More sharing options...
MomtoGiuliana Posted March 28, 2005 Report Share Posted March 28, 2005 corinaI am glad you have this new hope. I hope this specialist can help you. I'll be thinking of you on April 12th.What is this 6-month re-hab exactly? How do your doctors think this would help? Hopefully this new specialist can advise on this.Katherine Quote Link to comment Share on other sites More sharing options...
corina Posted March 28, 2005 Author Report Share Posted March 28, 2005 Hi Katherine, thanks for asking. The 6 months re-hab is that my PT wants me in a rehabilitation centre for at least 6 months. It's meant to be able to exercise several times a day because I can only exercise for 2 or 3 minutes and I'm not allowed to do that on my own. I can do some things in my chair but that's not enough. There is a day program also but that's not suitable because I have to be ready early and come home at the end of the day, do the cooking (when my husband works), the dishes and help my children with their homework. I can't do that. Also I could get massages for my flexing muscles and could get balance exercises. I have a lot of balance trouble so that I can hardly walk at home anymore. Corina Quote Link to comment Share on other sites More sharing options...
DancingLight Posted March 28, 2005 Report Share Posted March 28, 2005 corina,no guilt about being away, okay? you have to take care of yourself...we all will understand.but, i get the guilt thing too....i am so behind on posts and keeping up with everyone too. i log on and pick a post or too from the top and that's all i can do right now!we do the best we can! anyway, i wanted to let you know how much i think about you and will keep you in my thoughts and hope that this appt. will be helpful. please report back to us!oh, and by the way...pink IS my favorite color! i'm wearing pink pajamas right now. and, yes...we do have easter egg hunts in the u.s. too! hope all your eggs got found and you don't find a rotten one weeks from now! sending you lots of hugs from far away! hey, i can't even read in my own language right now, more or less type in anothe one!em Quote Link to comment Share on other sites More sharing options...
geneva Posted March 28, 2005 Report Share Posted March 28, 2005 HI Corina, it is wonderful to hear from you again, but please do NOT ever feel guilty when you are not up for posting....everyone understands that around here. Of course, most of us are worriers so the absence of veterans is missed!I am so pleased to hear that you have support people who are on your side and will not give up on you. That is so important in managing a condition like ours. I hope that the doctor you will see next month can help develop a plan of action for you that will allow you to improve from where you are right now. Is this doctor nearby or do you have to travel to visit him?I can imagine that going into a rehab facility will make it difficult on your family but if it could give you any imroved quality of living, I feel sure they would be willing to make the sacrifice. It has been said many times here, but it is so true--you can best help others when you have taken care of yourself first.Rest well and I hope you will keep us posted on your doctor visit. Quote Link to comment Share on other sites More sharing options...
Merrill Posted March 28, 2005 Report Share Posted March 28, 2005 Hi, Corina! I was so happy to see your post today... I've been missing you! (I've also been owing you an email--and I'm feeling so bad about that. Hope you'll forgive me! It's been a busy time, but I haven't stopped thinking about you and hoping you were doing OK.)I agree with the others, as you know: when you're most down and out is the perfect time to reach out here ... we will throw you a lifeline and help you through as best we can. Offer advice, support, good humor... someone always has a little something in a pocket worth sharing.I will keep you in mind as we approach your appointment ... we'll do what we can to give you the confidence you need.Maybe it would help if we were reminded of the meds you're on and the therapies you've tried? Has anything at all given you a boost? Please keep us posted on how you're doing--physically and emotionally. This is a great place to let off some steam; remember that you're not alone in your struggle.Take care,merrill Quote Link to comment Share on other sites More sharing options...
morgan617 Posted March 28, 2005 Report Share Posted March 28, 2005 hey corina, i stayed off for a long time too, just cuz i've been feeling so awful. know that we are thinking of you and hope this new doctor works out. you never know when you've just about given up, along comes an angel. hang in there and sending hugs your way. morgan Quote Link to comment Share on other sites More sharing options...
Ernie Posted March 28, 2005 Report Share Posted March 28, 2005 Hi Corina,It's nice to see your post. Please don't feel guitly about not posting. I have not been posting much either.Good luck with your new specialist.Ernie Quote Link to comment Share on other sites More sharing options...
MightyMouse Posted March 28, 2005 Report Share Posted March 28, 2005 Corina, it all comes out even in the end--sometimes you'll post more and support others and sometimes we'll support you... lurking is permitted! On this site, the rule is post when you are able--and when you're not, take good care of yourself. We'll be waiting for you when you can make it back here.I sure hope this new doctor is able to help you be more functional. I imagine it must be depressing to think of being in an inpatient rehabilitation center for half of a year--and I cannot imagine that it will improve your day to day functioning. What have they got to offer you that's better than being at home? Some special therapy? Unlikely. If your doctor doesn't know how to manage your care, a rehab center is likely to know even LESS.Do let us all know how your appointment goes! Nina Quote Link to comment Share on other sites More sharing options...
Guest tearose Posted March 29, 2005 Report Share Posted March 29, 2005 Hi Corina!I am very excited for you!This rehab program sounds like a "special wellness school". You will be able to take care of your special needs and focus on getting strong with a lot of professional help and tools!I am keeping you in my positive thoughts and I visualize you in October, walking through a lovely field of flowers! Six months will go quickly and the benefits will last your lifetime! We will be with you through this no matter if you post or don't!I want to hear when you become a rehab school graduate!best regards, tearose Quote Link to comment Share on other sites More sharing options...
corina Posted March 29, 2005 Author Report Share Posted March 29, 2005 Thanks soooo much for writing and helping me. It means so much to me.Emily, I think we feel the same about feeling guilty, I think I wrote you not to feel like that, didn't I?!!Geneva, thanks so much for your sweet words,Merrill, I knew you were right. Ernie told me to post on this some time ago, just like you did. Thanks to the both of you, you're great advisors!!!Morgan, I didn't write you when you were in the POTShole, because I had nothing to say that could have helped you, I hope you're doing a little better these days.Nina, I think my PT is right and that I DO need the internal rehab. It's very difficult but I so much want to get some better so that I would be able to drive again or get on my motorised bike to buy my kids an ice cream. I think you can understand that! Besides, it might take a long time before they can have me.And Tearose, thank you so much for always being positive. I've learned so much from the things you write, you have such a positive attitude, it helps me very much. I was crying about your exercise topic some time ago because I sooo much wanted to enjoy you all and I tried but couldn't do it so I didn't want to write on that because I didn't have a success story.Thank you all, for helping me, I sooo appreciate it,Corina Quote Link to comment Share on other sites More sharing options...
MightyMouse Posted March 30, 2005 Report Share Posted March 30, 2005 Corina, it sounds like the rehab centers where you live are better than what we have here in the States! That's a great thing for you If you do end up going, I hope that they are able to help you back to being more functional.Nina Quote Link to comment Share on other sites More sharing options...
tammyokc Posted March 30, 2005 Report Share Posted March 30, 2005 Hi Corina, I am a new member but I have to tell you your post sure inspired me! Just to see your strong will and never give up attitude has lifted my sagging spirits. I think you're amazing. Hang in there new friend!!! I'm praying for your appt. in April. Quote Link to comment Share on other sites More sharing options...
Guest Julia59 Posted March 30, 2005 Report Share Posted March 30, 2005 Corina,I'm glad you have a PCP who never gives up on you. That is very important to have at least one Doc who believes what's going on is real. I have high hopes for you that this new Doctor will find more answers, and have the ability to help you feel better.Don't feel guilty. There are many times that people just can't handle posting and reading the posts at the same time. And on really bad days many don't go near the computer. That is just a fact of life for most of us----good days---bad days---- You are going through enough right now---please, please don't worry. WE will always be here for you no matter what----we all understand. I'll be thinking good thoughts, and will say a little prayer for you the day of your appointment with the new Doc. Julie :0) Quote Link to comment Share on other sites More sharing options...
corina Posted March 30, 2005 Author Report Share Posted March 30, 2005 Thanks Nina, Tammy and Julia for your sweet words. It means VERY much to me!!! Corina Quote Link to comment Share on other sites More sharing options...
DancingLight Posted March 30, 2005 Report Share Posted March 30, 2005 ditto what everyone said about posting...i try to get on now and at least check in, but right now, even that is hard...so i understand! julie is right...some days you can't even look at the computer.anyway, what i wanted to say...b/c i haven't had much humor/wit that you all count on lately!....here goes!i hope that you have a computer at the rehab center! i hope they have a place where you can do internet, b/c i don't know how we can go six months without seeing you here! i really mean that!hugs and keep us posted...emily Quote Link to comment Share on other sites More sharing options...
Gena Posted March 31, 2005 Report Share Posted March 31, 2005 Corina,I think you are truly an inspiration to us all and I second Emily's sentiments about hoping you have access to a computer while you're at rehab so you can post once in a while. We'd hate to lose you for that long, but it sounds like a good thing for you to do. I know it will be hard for you and your family, but hopefully the final results will all be worth it!!. Hugs,Gena Quote Link to comment Share on other sites More sharing options...
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