Have someone tell you that? It makes me smile. I dont even waste my time explaining people all the invisible struggles I have :)
For those who wonder, I am doing good. I am dealing with hearing loss, vision problems, dizziness, loss of fine motor skills, "fog (that i call brainfart) haha or confusion. These things are so little to me considering 2 months ago i really thought i was going to die. I am such a blessed woman. I progress really well. For about a week now, I have a surprising amount of energy and even can clean around my now very very messy house. haha I surprised myself today by walking at a pretty normal pace, without my walker or my cane. When I was sent to rehab, I knew I had to re learn how to walk and a lot more, and at the end of session One I knew I would again. Wow this was a very intense 2 weeks, but considering I was sent there for 2 months and was good enough to go home after 2 weeks, I am blessed!! This journey has been amazing and i was ready for a very long and painful recover, was not even upset when I woke up not being to talk, move and could barely see (i was just happy to be alive) I am a thankful and happy person! Things happen so fast for me!! I found I had a CM last may and that it had bled twice. I was offered the brainstem surgery by Dr.Spetzler after being told by 2 local neurosurgeons that it was inoperable and at the most 5 years before i have a major bleed/death/very disabling stroke etc etc. In February, I was really agonizing over having the surgery now, or wait! A few days after I decided to go for the surgery, I had my 3rd bleed, my worse, that left me paralysed for hours and unable to breathe. A week later I was on my way to Arizona and here I am 2 months later. (I still think its January and on a Friday in the morning when i wake up but that is another story haha) When people asked me where I was, or why they have not seen me in a while etc. and i tell them I had brainstem surgery and had to relearn how to walk and my legs still feel like heavy iron bars, they say "But you look so good!!" It make me laugh everytime :)) Its a really bitter sweet statement and I am not sure why.
My daughter struggles with this all the time. She is 13 and she can’t really run well any more, has loss of sensataion in her saddle area and has no use of her bladder among other things. However, she looks completely normal. During gym class this year some of her class mates started making fun of her for not being able to run. She doesn’t say anything because she doesn’t want to have to explain why she can’t run. They call her lazy, she is so far from that. She is brave, courageous and stronger than any one I know. We are going to the TAAF walk this weekend all the way from Maryland because she is ready to take this on and has been training for it. Stay strong and I hope you continue to improve!
Poor thing!! Your daughter sounds like an amazing young lady!! To deal with this as she enters adolescence is making her have to mature and grow up so fast!! She will be so mature so young... Lazy?? I hope she puts these kids in their places one of these days tho!! It makes me want to go give them a speech!
This is why I love this forum, we all can understand what this is like. I hope that you continue to recover your strength. My daughter is still gaining strength and it has been almost 3 years since she was in a wheelchair. Keep fighting.
Dandelionwishes, Stay Strong! I can't count the number of times people have said "But you look so good". The problem is that they can't see the inside of us. They can understand a broken leg, but it's seems to be difficult for them to understand our injury at all. Hang in there...You have us..we totally understand!
Yes i have and read it a while ago, before surgery!! :)) I forgot about it now! Tht's what people use to tell me! now its "but you look good" since this thing is not in my head anymore.