Posted 8/22/2011 3:39 PM (GMT -7)
Hi everyone! I am new here. I am 33 years old. Diagnosed in 2008 with first (known) attack - the entire left side of my face & head went numb and my left hand fingers. It went away after about a month with no treatment, of course it took about that long for a definite diagnosis. I had 2 lesions then and was put on Betaseron and had no attacks until 3 weeks ago. I woke up with visual disturbances, thinking I was about to get a migraine. Never got the headache. It got worse the next day and it is in both eyes. Two days later, I went to my neuro doc and...surprise! He admitted me to the hospital for fear of optic neuritis. I was immediately started on SoluMedrol and started with all of the tests. 2 MRIs and Visual Evoked Response...so after all that, the doctors told me I have a new lesion on the optic region of my brain, which is why it is affecting both of my eyes, instead of affecting one or the other - then it probably would have been on an optic nerve. So although that is a better diagnosis, I still haven't regained full vision. I was in the hospital 6 days, 6 rounds of steroids. Came home on prednisone. I can't drive and have to rely on friends and family. The crappy part about that is that my husband...he just doesn't understand and he never really has. He is full-time military and basically just works and sleeps. I do everything around the house and with our kids (2 boys, ages 11 and 13.) Now he is having to do more, including driving me and the kids around, and he doesn't like it at all. But he also resents me asking my friends for help, even though they are more than happy to help. We weren't getting along too great before this attack, and when I ended up in the hospital and then came home and had to rely on him, he made me feel like he was doing all as a favor to me and I should be grateful he was even doing anything at all. His words were, "I have no sympathy for you." That just broke my heart. I have spent every night in bed alone, crying, wishing he would put aside our problems and just be there for me because I need him, and I have told him as much. He just comes back at me with mean words, or just ignores me. I don't know what to do anymore. Having to rely on him right now is rough. I make a point to say thank you for everything, but I don't think he cares about that either. He even started doing nothing last week, literally coming home and just sleeping on the couch until about 2 am and then getting up and watching TV or on the computer. He told me he was "living up to my expectations" of not helping me out when I need it. So I feel like I am "darned if I do and darned if I don't." And my kids are suffering for it also. Any advice? Anything? I am hurting all over and still can't see well...I don't expect to be treated like rice paper or a queen, but I just need some understanding right now. I also need compassion and love from the one person who can make me feel loved, and he's not willing to give it to me. Dealing with this new attack and possible change of my meds to Tsyabri is really depressing me, on top of dealing with him.
i would really appreciate any advice you can give.
We must be willing to let go of the life we have planned, so as to have the life that is waiting for us. Joseph Campbell