Jennifer Bannon, Columnist, MSnewsChannel.com
Advocacy this is a word that anyone with MS or anyone who has a loved one that has MS. Let me explain. I'm writing this in the ICU waiting room because not only do I have MS but my uncle has MS and only the two of us really seem to know the personal he** that we sometimes experience with MS. So I feel the need to be here to tell the people who don't know about MS what my uncle is feeling and experiencing so he can be comfortable and get the care he deserves and so the doctors don't underestimate him/US.
He developed an infection and antibiotics just where not helping. So they decided the only way he was going to survive was to do surgery and drain the fluid from his lung. Well they got in there and
said that the infection had formed a cast around his lung and they had to chip it away and he only had a 10% chance of survival. Well the next day they tried taking him off the vent and he couldn't come off. The doctors were like we need to make a choice how do we want him to live? I said he has MS. So a person without MS would come off today. He will come off tomorrow. It takes 6 weeks to recover it takes us 12 weeks to recover. They just rolled their eyes at me. These are doctors I worked with up until I couldn't work anymore. Well......that next day came they went to take him off the vent and what do you know he was breathing on his own. 10% of survival huh? Need to make decisions huh? Ready to eat that humble pie yet?
The reason behind giving you this personal story is...... When the doctors or people are trying to strong arm you into making a decision right then. Know you don't have to. Go for what you feel is right for you and your loved one. Weather that is waiting extra time, second opinion, or just calling in someone to talk to. MS was not there specialty lungs and surgery where they don't deal with MS every day and they didn't call in anyone who did. So be your own advocate make it clear what you expect and make sure your loved ones know too.
I love all my MSers and as much as we want to yell at people for being stupid we need to educate them too.
