Friday, May 25, 2012
When I was first diagnosed with MS in 2006, I didn’t know anything about it. I learned a lot quickly through books and the internet. I was disappointed that the only therapies available were injectables. I really didn’t like needles (I still don’t) but it was important to me to start on a therapy as soon as possible. My neurologist and I decided on Avonex, a weekly intermusclar injection. I was given a DVD to watch and was told a nurse would come to my home to teach me and Abe, my husband, how to give the shots. We bought oranges and were ready to practice with the nurse as I would be receiving my first injection. At first it didn’t seem so bad when it was the orange getting an inch and half needle piecing through its skin. When it came to my turn, however, 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.
The second week it was just me and Abe so we made the preparations exactly as the nurse taught us and Abe was ready to inject into my thigh. However, right when Abe would get to the “1” in the countdown I requested 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 before the shot, neither of which helped that much. So, I turned to my online support group. I learned of a prescription numbing cream called Emla. I was able to get a tube of what I started to call “Miracle Cream” before my next injection. I would put some on my thigh (I never was brave enough to use my arms in the year and a half I was on Avonex or do an injection myself) a half hour before my shot and then taped on a piece of saran wrap over the cream. I know how silly that sounds (and looks!) but it works! I also drew a circle with a pen around the numb area to indicate to Abe where to inject. The cream made all the difference in the world!
Once I started using the cream, my weekly shot became so much more bearable! I wouldn’t feel when the needle would pierce my skin which meant I wouldn’t move my leg from being startled. Moving my leg made the shot so much worse. Also, we learned to slowly push the plunger of the medication rather than quickly to get it over with. I really had wished somehow I could have known about all these tips sooner, but I was so thankful to have the shots become easier! I encourage anyone to look into this “Miracle Cream!”
Sunday, May 13, 2012
Welcome to my first blog! My name is Caroline, but my nickname is Bean (hence Bean’s Blog) and I was diagnosed with Multiple Sclerosis in 2006. My 6 year anniversary is coming up in July. Usually people celebrate anniversaries, but I think I will skip the balloons and cake. (Ok, maybe I won’t skip the cake!) I certainly have been on a bumpy journey since my diagnosis, but there have been a lot of positive experiences. Through my blogs I would like to share my ongoing journey with you.
But, before we venture out, let me tell you a little more about myself. I am 32 years old and have lived in Boston my whole life. I live with Abe, my husband (not officially, but we’ve been together over 11 years) who is ring leader in my support system. I work full time in a periodontal office as a receptionist. I have been there for 9 years and really love my job. I enjoy paperwork and interacting with patients. I also have a slight obsession with teeth. Before working in my current office, I worked in a general dental office for 6 years, so the obsession started when I was 17! Other than teeth, I like to read, listen to music (especially Tori Amos, my other obsession) travel, watch TV, hang out with friends/Abe and of course, write! I have always had a passion for writing, whether it was a school assignment, writing in my journal or writing poems. Recently I have found a new passion, and that is creating awareness for MS. 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 would have named my team with my nickname, but it was already taken! Can you believe it?!) I have been involved in 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. I don’t work for them or anything, but like most people, I like things that are free! I did however start volunteering for the MS Active Source website as a mentor. 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.”
This leads me to why I wanted to write a blog. 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.” I needed somewhere to turn to and couldn’t find anywhere. I asked my doctor if the hospital had a support group and was told they didn’t. I started to buy a lot of books about MS and really enjoyed reading about personal experiences people had, though I wanted real life interactions with people who have MS. So, I write this blog because I turned to the internet. When I needed someone who could empathize with me, the virtual world came through for me. I joined a few Yahoo groups and it was great being able to communicate with people who knew exactly what I was going through. It took me a while to find those groups and to realize how empowering the internet could be for a newly diagnosed person, like me. It was through those Yahoo groups that I met some wonderful friends. One of them also lives in Boston and told me about a support group at another local hospital. I still go to that monthly support group now. There are numerous friends I have made all because of MS, and for that I am thankful. But, I know there are still places that don’t have support groups or people who aren’t comfortable going to support groups but are still looking for support somewhere and they may turn to the internet. If just one person reads my blog and feels just a little bit of comfort, I am a happy Bean! 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!
So, this anniversary I think I will proudly have a slice of cake! “I may have MS, but MS doesn’t have me” is quote I will never get tired of hearing. They are definitely words I will try to live by, and eat cake by!