Finding Inspiration for MS Awareness
We would like to introduce you to the incredible Caroline Kyriakou who inspires us with her dedication to spreading MS awareness and positive attitude! We are grateful to be able to share her amazing story with you:
First let me say how thrilled and honored I am to be featured for the Nancy Davis Foundation. I am so thankful for all Nancy Davis and her foundation do for all of us with MS and the awareness they bring to this disease.
Now, let me introduce myself. My name is Caroline Kyriakou, I am 32, am a lifelong Bostonian and was diagnosed with Multiple Sclerosis in 2006. I certainly have been on a bumpy journey since my diagnosis, but there have been a lot of positive experiences. I have a great support system starting with Abe, my husband, who is the ring leader. My family and friends also are very supportive. For the last 4 years I have participated in Boston’s Walk MS by leading Team Kaliope with Abe, my sister, Annie and friends. (Kaliope is my Greek name for those of you wondering.) I have been involved in awareness projects including the 2010 National MS Society Greater New England chapter’s video for MS Awareness Day and I was on FOX’s Boston morning show in 2009 for World MS Day talking about the MyMSYoga DVD along with yogi, Baron Baptiste. MyMSYoga is a free yoga DVD made especially for people with MS of all progressions that is available through the MS Active Source website. Within the last year I started volunteering for MS Active Source’s mentoring program. I really have enjoyed being a positive influence in people’s lives. I also started two online support groups. One through the 29 Gifts website called “Givers Who Have Multiple Sclerosis.” 29 Gifts is a book written by Cami Walker who has MS and she has started a social media website where “givers” can communicate. The other group I started is on Facebook and is called “Friends Against the MonSter.” Most recently I started blogging for MSRelief.com which has been a lot of fun and I am so glad to be creating awareness for MS. This prompted me to start a Facebook page for myself as a writer. This has become a passion of mine and have done all that I can to spread MS awareness.
When I was first diagnosed, I was scared. I was 26, didn’t know what MS was and had no idea what my life would be like after hearing those 3 powerful words: “You have MS.” After getting over the initial shock, I knew I wanted to start a therapy as soon as possible. I was disappointed that the only therapies available were injectables. My neurologist and I decided on Avonex, a once a week intermusclar injection. I quickly learned I had a fear of needles. I had gotten shots at my doctor’s office before and have a few tattoos, but this was different. I already knew there was no way I could inject myself so Abe volunteered. At first, it wasn’t easy. Right when Abe would get to the “1” in the countdown I requested before the injection, I would swat my hand at him that I wasn’t ready and needed more time. He told me I had to get the shot, so I might as well get it over with. It sounded reasonable, but fear over took my body. I don’t know how long it took, but eventually I had the shot. Quite a few weeks were like this. My doctor prescribed something to help me relax and I started to have a glass of wine, neither of which helped that much. Eventually I learned of a prescription numbing cream called Emla. The cream made all the difference in the world! Once I started using the cream, my weekly shot became so much more bearable!
I switched my MS therapy to Tysabri in 2008. I had been on Avonex for a year and a half and finally had found somewhat of a routine with the weekly shots. After getting MRI results, my neurologist informed me that Avonex was no longer working for me. I had a couple options, the ones I was considering were Copaxone, a daily injection or Tysabri, a monthly infusion. I was fairly certain that I would go with Tysabri, just because of my needle phobia. I really couldn’t see myself getting a shot every day. Also, I didn’t want to have to depend on Abe or anyone else for them as I knew I wouldn’t be able to give myself the injections.
I was a little nervous about starting on Tysabri because of PML, a rare brain infection that can leave you in vegetative state or be fatal. My neurologist informed me that I would be closely monitored. I felt comfortable with the decision to start Tysabri and scheduled my first infusion. I have now been on Tysabri for over 4 years. I am so thankful I made this choice. Within the last few years there has been a blood test that can detect if you have been exposed to the JC Virus, which puts you at risk for PML. The last two years I have tested negative. For me, Tysabri has worked so well. Not only is my quality of life been better because I no longer have to worry about shots (as soon as the shot was over, I started having anxiety about the next shot) but I haven’t had a relapse since my first infusion!
MS has led me to some really positive things in my life, friends being at the top of the list. Without MS I never would have met a whole circle of friends, some with MS and some without, that I cherish. MS has also reinforced my appreciation of life. As much as MS sucks, it is a very livable disease and I intend to live my life to the fullest! “I may have MS, but MS doesn’t have me” is quote I will never get tired of hearing. They are definitely words I try to live by!