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Date Joined Jan 2009
Total Posts : 1
Posted 2/2/2009 1:56 AM (GMT -6)
Im in love with Adam, he was my first boyfriend and we kept in touch for 8 years, since we connected again. I just found him again 3 weeks ago and immedialetly took a train to his house. I go there and it was amazing, we finished sentences and so much more came so easy. He told me he has been in love with me for so long, he fills every void every hole in my life, he treats me like a queen. I always knew from the first reunion that he had MS. Im just now learning that he has every type of MS chronic. Now he has brain swelling on top of this. He is in pain all the time, in every part of his body. Just this last two weeks he has hallucinated, in pain so bad I couldnt touch him, sadness, banging into walls hurting himself real bad that he cant feel it because of his daily pain and so on... The only thing I know in my 38 years of life is that I want to be with him take care of him, be behind him every step he takes.
I am doing my best to learn everything about
this disease, but books dont tell me about
the pain , how its so bad I cant touch him. How when he gets depressed what to say to him to bring him back, how to wake up before him and walk behind him so he doesnt fall into the wall or the door jam.
Im reading alot of these chats and Adam is so different, he wont let this get in way of his life. Tonight Im in NC and he is an Ga and he is real bad, hallucinating, calling the doctors, he can hardly talk, vomiting, he cant move. Im a wreck , so far away from him, helpless. this goes on for 3 hours, IM on the phone with him telling him this will pass, as he is in so much pain he can feel his brain swell, his temples are sore, he is blind in one eye. I dont know what else to do except find his closest friend s number and ask for help. I call his close firend and his friend calls him and all the sudden he is better. It worked, his friend calling snapped him out and now he is playing guitar for hours with his friend. He actually got in his truck and drove to his friends house and played guitar for hours. I am now awaiting his phone call on his ride home. This man is amazing the way he plays guitar OMG, all I can say is if you hear him your heart and eyes will swell with emotion. looking at him you would never know.
But it is here this disease, his prognosis is bad! But I dont care all I can think of is how can I help him? Im only human with human reactions and we have disagreed twice since we have been together and he has become so weak from it that I thought he was alseep. I tried to confront him and he was on the couch, his eyes shut his arm over his head I couldnt budge him. Later to find out that he was coherent and heard me he just couldnt move. Im so sad I didnt know that. I would have held hm in my arms tell him this would pass. To tell him Im not going anywhere hes gonna be fine, tell him to fight.
My reason for writing this is because I need to know how to help him. What do I do? He is on alot of meds but refuses to take to many because of his liver.
BUt his state of mind isnt always the best and some times I cant speak the way Im used to because it offends him and then he becomes weak and it all starts over. I love this man, but i dont know if im helping or hurting. I know I need to be with him, but im taught to submit to the man of my dream s and this is not the case. He needs me strong, but he doesnt and im kinda confused how to be. In the long run I have to submit, then I have to be strong, then I have to walk on ice. I just want to be strong with out making him weak.
PLease i ask for advice,when you are in this state what do you wish someone would tell you? Do you even want some one around when this pain is all over. when do I call the ambulance, when do I panic, when do I hold you, when do I cry.
I really love this man and we plan to marry. this is my life long dream to marry this man and be there for him every second.
I just want to help and not hurt.
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Date Joined Mar 2006
Total Posts : 2146
Posted 2/2/2009 9:27 AM (GMT -6)
Hey Adams Girl
I'm so sorry for what u and Adam are going thru. I have to say that the degree of pain and depth of symptoms....hallucinations for example...that he's experiencing aren't typical for ms. That's not to say it can't happen, but it's not as heard of. That in mind, the depression forum may be a better place for u'r questions. MS is a varied disease. It can affect people in many different ways and tho people will complain of the same symptoms, more often than not, most will not have the same SET of symtoms altogether. What is Adam taking for the pain...I suspect Neurontin or some other. I'm sure his doc has investigated these meds and feels confident that these are safe for him. I know he is concerned for his health in taking so much, but honestly, not taking it seems to be causing the same effect he's worried about
in essence. For his overall quality of life, it's got to be better to try to take this med.
Try the depression forum and maybe u could get him to post as well. U are, of course, welcome to continue posting here too. There is nothing like talking to others who are hurting and in the same place as u'rself. It can be so theraputic. Let him just read for awhile and see that there are many who are right where he is and maybe he will be comfortable with talking to others himself. Take care and best wishes.
Co-Moderator, MS Forum
*~*Sometimes the Lord calms the storm. Sometimes He lets the storm rage and calms His child.*~*
Things that make u go hummmm......
*I wonder how much deeper the ocean would be without sponges.*
*One day without sunshine is like...um..well...night?*
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Date Joined Dec 2008
Total Posts : 196
Posted 2/9/2009 2:26 PM (GMT -6)
God bless you young lady. If you can put up with Adams MS, then you are a real Saint. I, too, have a real Saint that puts up with my MS. Thank God that she understands the things I go through and is always there to help me. It makes it so much easier for me. Good luck to you and Adam and God Bless both of you!
Chuck the old man :>)
AMWTP Training Instructor
Idaho Falls, Idaho
Diagnosed with PPMS May, 2006
but still working at the present.
Tried just about everything there is for MS, including Tysabri
Waiting to start Cytoxin Treatments soon.
Post Edited (bohuck2) : 3/23/2009 11:31:00 AM (GMT-6)
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