I have decided to do the Annual MS walk in GR this year! I am forming a team and asking for any amount you can give! Follow the link below to sign up for my team or make a donation. Thank you.
http://main.nationalmssociety.org/site/TR/Walk/MIGWalkEvents?team_id=285218&pg=team&fr_id=17487
Wednesday, February 29, 2012
Wednesday, February 15, 2012
Day #2
Just finished up Day #2 of steroids! They kicked it into high gear and got me out of there in 20 minutes!
It was a nice Valentine's Day, spent time with Rodney & enjoyed some quiet time.
Slept ok, took the Ambien I was prescribed but still woke up a few times. Fell right back asleep and got up about 6:30 this morning. Not bad!
Signed off on the new drug. Got to see if our Insurance will cover it. If not then we have to look at assistance or a different method. I hope we can get it covered. Do NOT want to shoot up again! :(
Everyone have a great day! Only 2 more days of work before I get a week off in sunny San Diego!
Oh, also, planning on getting a team together for the MS walk @ Aquinas college on May 19. Once I get my team together I would love to raise $500! I will be contacting you! LOL
It was a nice Valentine's Day, spent time with Rodney & enjoyed some quiet time.
Slept ok, took the Ambien I was prescribed but still woke up a few times. Fell right back asleep and got up about 6:30 this morning. Not bad!
Signed off on the new drug. Got to see if our Insurance will cover it. If not then we have to look at assistance or a different method. I hope we can get it covered. Do NOT want to shoot up again! :(
Everyone have a great day! Only 2 more days of work before I get a week off in sunny San Diego!
Oh, also, planning on getting a team together for the MS walk @ Aquinas college on May 19. Once I get my team together I would love to raise $500! I will be contacting you! LOL
Tuesday, February 14, 2012
New drugs- Goodbye Trial
WOW! It has been a year since my last post. You would think that would mean good news right? Well I thought so!
Went last week to get my 1 year follow up tests: MRI, pulmonary, eye exam and physical. Well I was feeling great! I have lost almost 60# since March and have been having no symptoms.
Unfortunately I had 4 new lesions, 2 of which are "active" which should give me some kind of symptom like numbness or eye sight issues. Well I'm not! So that means, the trial meds are not working so I have to drop out of the study. Bummer!
So with that I am currently undergoing IV Steroids for the next 3 days. Happy Valentine's Day to me! The steroids cause some adverse effects: mostly sleeplessness and this nasty metallic taste in the back of my throat. I got plenty of Root Beer to take care of the taste and Ambien waiting for me at Walgreens.
Now I have to decide what to do with my med treatments. They do have a FDA approved pill called Gilenya. I really like not having to shoot myself up everyday. When I was on the Rebif I got these nasty splotches all over the injection site and they itched like crazy! I think I will start with the Gilenya and see if that works for me.
So for now, I am drug free. We leave for San Diego on Monday and no need to worry about those things until I get back.
When I do start the Gilenya, if my insurance covers it or I can get assistance to pay for it, I will have to hang out at my favorite Dr. office for the day so they can keep an eye on me. The drug can cause low bp and heater rate.
There is a plus of the trial, I have not paid for a drug in almost 2 years now!
So that is it! I am symptom free but I guess my MS is a little more progressive than we thought. I got lucky because one of the flare ups is almost in the same spot that caused my double vision. I got to look at my brain & yes, I do have one!
Thanks to my friends and family for their support during all this. I think this is going to motivate me to really get involved in MS research and see how they are doing. I really want a cure not just a preventative medicine. Hoping to work with my cousin to set up a Walk for MS team and collect some money for research. I have been handed this disease & I will not let it get me down. In a few days I will be in 70 degree weather, wearing flip flops & sporting my pedi & thinnerness!
Until next time! I will post once I start taking the Gileyna and tell you how it is going! :)
Went last week to get my 1 year follow up tests: MRI, pulmonary, eye exam and physical. Well I was feeling great! I have lost almost 60# since March and have been having no symptoms.
Unfortunately I had 4 new lesions, 2 of which are "active" which should give me some kind of symptom like numbness or eye sight issues. Well I'm not! So that means, the trial meds are not working so I have to drop out of the study. Bummer!
So with that I am currently undergoing IV Steroids for the next 3 days. Happy Valentine's Day to me! The steroids cause some adverse effects: mostly sleeplessness and this nasty metallic taste in the back of my throat. I got plenty of Root Beer to take care of the taste and Ambien waiting for me at Walgreens.
Now I have to decide what to do with my med treatments. They do have a FDA approved pill called Gilenya. I really like not having to shoot myself up everyday. When I was on the Rebif I got these nasty splotches all over the injection site and they itched like crazy! I think I will start with the Gilenya and see if that works for me.
So for now, I am drug free. We leave for San Diego on Monday and no need to worry about those things until I get back.
When I do start the Gilenya, if my insurance covers it or I can get assistance to pay for it, I will have to hang out at my favorite Dr. office for the day so they can keep an eye on me. The drug can cause low bp and heater rate.
There is a plus of the trial, I have not paid for a drug in almost 2 years now!
So that is it! I am symptom free but I guess my MS is a little more progressive than we thought. I got lucky because one of the flare ups is almost in the same spot that caused my double vision. I got to look at my brain & yes, I do have one!
Thanks to my friends and family for their support during all this. I think this is going to motivate me to really get involved in MS research and see how they are doing. I really want a cure not just a preventative medicine. Hoping to work with my cousin to set up a Walk for MS team and collect some money for research. I have been handed this disease & I will not let it get me down. In a few days I will be in 70 degree weather, wearing flip flops & sporting my pedi & thinnerness!
Until next time! I will post once I start taking the Gileyna and tell you how it is going! :)
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