Sunday, August 18, 2013
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.
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.
Tuesday, July 2, 2013
The PROS and CONS of Aubagio and my experiences and then why I take it
Pro: No more shots!!! Mentally I can deal with a pill everyday it doesn't say to me Jennifer your one sick puppy like the shots do.
Con: you have to start at the highest dose 14mg instead of starting at the low end at 7mg and working your way up because the study shows 14mg to be most effective.
Pro: You don't have to worry about your refills because the specialty pharmacy will call you and tell you it's time and set up your delivery of Aubagio. And girls you get to look at cute men if your home.
Con: (one I personally don't like) damn thing comes packaged in bubble pack instead of a bottle like the rest of my medication kind of hard for me to punch out. So I went to my pharmacy where I get my other drugs and had them print a label that said Aubagio and had my son and boyfriend punch them out and put them in the pill bottle.
Some of the side effects can be bad but do go away and to me they were worth dealing with so I didn't have to have the bite and sting of the shots and the nots and scar tissue that develops from them plus the fact that my body started rejecting them. Some of the side effects I've had that have gone away were food tasting like metal or just nasty. For this use boost or carnation instant breakfast because sweet tasting things are easier to eat during this time, nausea have your doc prescribe something for it because trust me it will help because as Aubagio is getting into your system it's like it's acting like a cancer drug but its not so don't panic, fatigue take extra vitiman D it really does help and try and soak up some sun even if its through the windows, weight loss it was nice but it will stop because your taste of food will come back but you may need to add some spice to your food till your taste buds are fully back, strength and stamina let me tell you I'm very active always on the go my always on the go kinda up and left me for about a month but I got up and got out just not as much and now I'm back to my old self and glad that I stuck with the Aubagio. Like I said all these things went away. My son and boyfriend had days they had to do for themselves or friends had to pick up the my loose ends for a week or two but don't let that be what discourages you.
This is why all people STOP taking the drug around day 52 people start having hair thinning or in my case since I have really thin hair it's some hair loss and brittle nails. I still get to have pretty nails just not as long as they once were and now I get short hair instead of shoulder length hair and get to play with wigs. They say it only last 5 months for me that will be the end of May and it will start coming back so if that's all I have to deal with then it's so worth it. No more shots no more worrying about if where I travel has a refrigerator for the shots I feel better my MRI is good and I've made a lot of Aubagio friends. If anyone has any questions y'all can message me.
Posted by MSnewsChanel.com.com at 3:01 PM