Positive Always, Funny, Love Love Love my Sweet 14 year old daughter and our chorkie Lola..Iam so thankful to have wonderful, knowledgeabe. supportive and caring connections here:o) Would love to find the right person to accept me and enjoy this life and hangin out together:o) Its been a year since I wrote these beautiful words to describe myself. So many changes in this year so I thought I would share. We all have good days and challenging days its what MS is and we choose how to accept each day in our own way. I feel stronger as I am the single mother of a 14 year old and yes I depend on whatever aide I might need to function each day to its fullest. I would say that I am definetly having an MS moment and my legs are not cooperating with my daily life. I was always a child of the sun and I had UV euphoria. Summer 2012 was an eye opener for me as I realized staying cool is so much better for my MS. Christmas 2012 I had surgery for port placement and immediately started Tysabri after being on BetaSeron for one year. My fifteen years after diagnosis I did not choose to begin a therapy and lived those years with minor relapses. So this is what my MS has looked like since my original post on March 2012. Remember-Stay Positive. So as my Tysabri journey has only been since December 2012 and I have gained a few extra pounds and fluid that I have recently noticed in my ankles. I will ask my neuro about this it next appointment. Side effect? I also have way more difficulty with each step as I have started using my rollator inside my home. I am excited as I received my new champagne colored rollator with all terrain tires. Fancy:o) Whatever it takes to make my life a bit easier. My daughter and I went last week for her Neuro follow up after her MRI and great news-NO SIGNS OF MS-I am so relieved and feel blessed.I have participated in the GEMS Study (Genetic Environmental MS) my saliva sample along with all of my medcal history is my main step towards finding much needed information. Check it out online. I move slower but I will always remain STRONG-mentally and physically. 8/22/13- Next MS Journey-5 days of solu medrol infusions next week, MRI of C and T spine, physical therapy and follow up in October-No more Tysabri! Possibly will begin Tecfidera:o) It is now May 2014 and I am still using my rollator in the house and just purchased a Kia Soul to get around town and I use my wheelchair now when going on long shopping days with my daughter and now do daily stretches and gentle yoga at home. Still using Tysabri with my JCVirus antibodies being positive and will discuss ending treatments in August. Stay Strong and Be Positive. May 2016 Wow! I am still here(living in a long term rehabilitation center) I now need 24 hour care. I had to sign guardianship to my brother and that has been very positive. My MS started going down hill last Summer and I slowly made it here. Even after all that I have been through I am still happy, funny and most of all positive. Stay Strong and live each day to its fullest.
I'm still taking Tecfidera and just had my MRI's done and no new lesions. I'm still living in a nursing home and now have a powerchair as well as my manual wheelchair. It's good to have choices. We all have so many choices with the medicine that we take for our MS, medical equipment that we use and even the people that we surround ourselves with. This is truly a journey for me and I know it is for you, just remember to stay positive and strong both physically and spiritually. Peace Out!May 29, 2018 Well I've done it now. I stopped Tecfidera last November because I wanted to start Ocrevus but I was not able to so 4 months passed and I was under too much stress getting my Daughter enrolled into TexasA&M Texarkana and I wound up in the ER with new lesions on my brain and cervical spine with 3 rounds of solumedrol and back to the nursing home with blurry vision and a very weak neck and I have trouble holding my head up. Staying Strong and Positive! Peace Out.