Inspiring Others to Raise Awareness

For 5 years I have participated in Walk MS. Family and friends walk with me showing their support and offering their encouragement. Others make generous donations. But for the first time, a longtime friend, also named Caroline, has formed a team in my honor and is participating in Bike MS Portland, Oregon! I was so touched when Caroline told me she was doing this and in awe when I heard that the ride is 2 days! Bike MS is August 3-4th, so just a couple weeks away. Caroline named her team Kaliope Oregon after my Walk MS team, Team Kaliope.

Caroline is showing her support in a whole new way and is not only raising awareness for Multiple Sclerosis, but raising funds.

The money that is raised for the National MS Society is so important and helps many people. If you would like to donate to Caroline to support her efforts, click here to get to Caroline’s secure webpage.


Caroline and I have been friends for about 20 years, originally becoming friends through pen palling. We would write pages and pages to each other (sometimes close to 20 pages!) talking about everything. Through the drama of high school, boyfriends and parents we would support each other and offer advice. Now, years later Caroline is showing her friendship in such an amazing way. We have met a few times (three times, I believe) when Caroline visited Boston and now keep in touch through email. I have yet to visit Portland, but hope to get out there someday.

Through thick and thin Caroline and I have been there for each other long distance.  I know when I am walking for Walk MS, Caroline is there with me in spirit and in a few weeks when she is biking, I will be cheering her on from across the States!

Celebrating Multiple Sclerosis

July is a very significant month for me.

July marks my 7^th MS anniversary and my 5^th Tysabri anniversary.  The days surely do fly by. I can’t believe it has been 7 years since my diagnosis. It feels like just yesterday I was in the hospital not knowing I was going to be diagnosed with Multiple Sclerosis.  I actually do not remember the exact date I was diagnosed, but I was released from the hospital on July 4^th – Independence Day and always celebrate then. Shortly thereafter I received my diagnosis, I heard those 4 words that turns everything upside down: “You have Multiple Sclerosis.”

At times I still think maybe there was a mistake; maybe I don’t really have MS. That’s the tiny part of me that is still in denial. A lot of people question “Why me?” but I read someone asked “Why not me?” I really like this saying. I often think of the way I have handled my diagnosis and realize now that I handled it very gracefully. After my diagnosis I never cried, which is kind of strange since I am a crier, but instead wanted to know what I could do to be in as much control of this disease as possible.

Now 7 years later, I contribute the slowness of my progression to starting on a disease modifying drug very quickly, but mostly for choosing to take Tysabri after Avonex stopped working for me. Since starting Tysabri  5 years ago, I have not had a relapse or too much worsening of my symptoms. Of course, I do have daily symptoms and some days are worse than others. But, I know how much worse my MS could be, and I am very thankful for all the functions I still have control over.

As much I would rather not have MS, I am grateful for the many positive things MS has brought into my life. Each year I lead my family and friends in Boston’s Walk MS, which I find to be a very inspiring event. I have found a passion for raising awareness and am doing that by writing this blog, mentoring those newly diagnosed and pretty much making my voice heard to anyone who will listen. I also have made some amazing friends, some with MS and some without, that I wouldn’t have otherwise met. That is the most precious gift MS has given me.

So, this Independence Day not only will I celebrate the United States, but will also celebrate the positive gifts MS has given me.  When you are watching the fireworks this 4th, maybe you will think of me for a moment and celebrate with me. Have a safe and happy July 4th!

Walking All Over Multiple Sclerosis

On April 7th I will be participating in Boston's Walk MS for the 5th year leading Team Kaliope.  The first year I joined I didn't know what to expect. When I entered the Harvard Stadium I was overwhelmed  by the sight of thousands of people.  We were all there for the same reason, but I was overcome with emotion because of my diagnosis.  Every year Abe and my sister Annie have walked by my side and friends have joined to help encourage me.  Having them walk along with me has been so important and appreciated.  The day starts off with everyone registering and Anthony Everett, a reporter for a local newsmagazine Chronicle, making a welcome speech. There are booths with information about MS, MS drugs and other supporters.  Once the walk is kicked off, we walk around the Charles River for either 3 or  5 miles. Everyone meets up back at the stadium where there is lunch.

Last year I was in the top 12 fundraisers in Boston! This year I hope to be in the top 10! If you would like to help me achieve this goal, please click here to get to my secure personal page to make a donation of any amount. Every dollar counts! In the past years I have tried to come up with fun ways to fundraise and have hosted several parties, such as Tupperware and Stella & Dot. Last year I hosted a dinner with friends at California Pizza Kitchen which donated a percentage of the bill. I also had Q&A printed in the local Brookline TAB newspaper.  I was so glad to bring awareness to MS which has become a passion of mine, and was thrilled when some of my patients (I work in a periodontal office) said they saw me in the paper!

This year I am hoping for nice weather, which we mostly have had in years past. I am especially hoping for no rain -- or snow! I have met many people along my journey and it is always so nice to see so many familiar faces at the walk. I always document the event with many photos to help share with friends and family, especially those who have donated.

Walk MS is really a special event, and if you haven't participated before, I suggest you check your local National MS Society chapter. Walks take place all over! I hope you will find the walk just as magical as me and together we can walk all over MS!

 

Running Shoeless Through the Airport with the "Awkward Bitch"

I had a last minute opportunity to take a vacation to Florida. At first I was a little hesitant since I was just there in October, but my friend, Barbara, who invited me, and I found really cheap flights. It was meant to be! I left on January 27th and spent the week in sunny Orlando. On the way to the airport we were delayed going through security, I am not really sure what it was due to. It was just busier than usual. Well, just as Barbara and I get through security, we realize that there was no time to even put our shoes back on. So, we go running through the airport to get to our gate. Just as we are approaching we hear the final call, and 2 flight attendants see us running. They ask which flight we are on and I shouted "Orlando." I keep running and as I make my way around the corner to our gate another flight attendant yells for us to hurry up. I wanted to scream "I have MS and am going as fast as I f**king can!" We got on the airplane, still shoeless, but we made it. There actually was someone else who got on after us! Go figure!


Barbara and I stayed at Disney's Saratoga Springs again, but this time the Spings resort. Our room was on the first floor right near the entrance. The Springs was located very close to the main swimming pool, which we enjoyed a few times. :) The week was very relaxed. We enjoyed nice meals, a few that we made ourselves, movies (I got to see FernGully for the first time) and there was time to do a little shopping. I was very happy with a skirt I bought for $8! I love a great deal! I also had time to read. More on that later. We didn't go to the Disney parks but were able to spend time in Downtown Disney. You may remember from my previous blog My Florida Vacation that there was a hot air balloon that I loved. Well, it was still there and again we were able to see it from our room. I had a goal of conquering my fear of heights and go in the hot air balloon, but didn't have a chance to do it. Next time!

As I mentioned earlier, I had some time to read and brought "Awkward Bitch: My Life with MS" by Marlo Donato Parmelee with me. I really enjoyed this book. Marlo, like myself, loves being fashionable. I always try to look my best and I wear make up every day. Whether MS gets in the way or not, I like to look my best! Marlo works in the fashion world and would always try to wear 4 inch heels. I usually can only wear up to a 2 1/2 inch heel so I applaud her effort. Marlo moved from the States to London with her husband to follow their dreams of being a musician. It was after this move that her symptoms started, including vision and balancing problems. It was quite a delayed diagnosis - she actually had pretty much diagnosed herself before hearing it from the doctor and it took a while for her to be able to start a MS therapy. For many, this is a common story. I am so fortunate that I got my diagnosis so quickly, within a month and was able to start a therapy a couple months later. Marlo has many talents in addition to a keen eye for fashion, including being a musician.  Marlo is funny and the book flows really well. The book is inspiring as Marlo continues to follow her dreams after her diagnosis and is even able to use her talents to spread MS awareness.  Plus, it was printed in a larger font, which helps us MSers! You should check out her book and I hope you enjoy it as much as me. I would love to hear what you all think of it.

Let's hope I never have to run through the airport shoeless again, but I am glad I had the "Awkward Bitch" along with me to keep me entertained this time!

Fighting Against MS Together

I wrote this for a piece about caretakers. It wasn't used, but I wanted to share it with all of you as Abe has been so supportive and wonderful during my diagnosis and everyday ever since then.

I was diagnosed with Multiple Sclerosis in 2006. It was a scary time as I didn't know anything about MS. I leaned on Abe, my husband, and together we did a lot of research online. I was disappointed that the only therapies available at the time were "injectables" as I quickly learned I had a fear of needles. It was important to me to start on a therapy as soon as possible and that meant getting a shot. My neurologist and I decided on a weekly intramuscular injection. I was given a DVD to watch and was told a nurse would come to my home to teach me and Abe how to give the shots. We bought oranges to practice on with the nurse's instruction and 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 piercing through its skin! When it came to my turn, however, my new fear overtook me. 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. He really stepped up as my caretaker.

The next week it was just me and Abe. We made the preparations exactly as the nurse taught us and planned 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 the sooner I got the shot the sooner it would be  over with. It sounded reasonable, but again fear over took my body. I don’t know how long it took, but eventually I had the shot. Many weeks were like this. I was on this therapy for a year and a half and that whole time I couldn't give myself the shot. My fear was so strong that I couldn't even look at the needle without feeling nauseous. During this time Abe was my rock. I truly counted on him as my caretaker to help me try to slow down this disease. Every week he would make all the necessary preparations as I would try to relax in another room. As soon as the shot was over, I would start to have anxiety about the next week's injection.

After that year and a half I switched my therapy to a once a month infusion. Abe has been with me to every infusion appointment and every neurology evaluation. I still get nervous around needles but having an IV placed is much less stressful for me than a long needle!  Abe and I have been fighting against MS together since day one, and he has always given me support in any way I need. I have a found a passion to raise MS awareness over the last few years and recently started blogging and mentoring the newly diagnosed. I also started a Facebook support group that Abe co-manages called Friends Against the MonSter. Abe and I have participated in Boston's Walk MS for 4 years and will continue to fund-raise until a cure is found. I feel so fortunate to have a great support system and to know that Abe is there for me today and everyday!

 

Hoping the Negative Streak Continues

During my October infusion I was re-tested for the JC Virus and had my Vitamin D levels checked.  People who are on Tysabri get the blood test to see if they have been exposed to the JC Virus. Usually people are exposed to it as children through the common cold, but it is possible to be exposed as an adult as well.  People who are JC positive can still take Tysabri but their chance for a rare brain infection, called PML is higher.  I have yet to decide what I would do if I tested positive... but I don't have to worry about that because.......for the 3rd year in a row I tested negative! Also, my Vitamin D levels came back good.  I am so excited and relieved! I will now be tested every 6 months for the JC Virus... let's hope the negative streak continues! (How often can you say that?!)

During my last infusion, I had some more blood taken to participate in a study for patients on Tysabri.  For a few reasons I became light headed and dizzy after having the IV placed and my blood taken. After a little while I felt better and Abe - who has come with me to every infusion - decided to "whomp" me with a pillow to cheer me up and caught the moment in a photo.

I have been on Tysabri for 4 1/2 years and am really careful not to catch colds. At work I wipe down my desk, phone, computer and printers a few times a day. I most often wipe my pens, since I am often handing them to patients to use. I am glad it has paid off -- plus I now rarely catch a cold which is great since it takes longer for MSers to recover and sometimes colds can trigger symptoms.  I hope that the negative streak continues for a long, long time!

My Florida Vacation

Last month I went on vacation and enjoyed a week away. I had a great time! I went with my friend Barbara to Florida and we spent most of the week in Vero Beach and 2 days in Orlando.

 

I was a little concerned if MS would rear it's ugly head while I was away, but didn't have any more trouble than if I was at home. I tried not to get too excited about my trip, thinking it would cause some increased symptoms.  I also was considering if I should take the opportunity to board my plane early, when they allow people with children to board and anyone who needs extra time. Both flights I didn't.  I knew if I wanted to, I had a complete right to, but was concerned with what other people would think. Kind of like getting use to using my handicap placard (for the whole story see my blog Handicap Placard).  But, I am still at a point where I really don't need the extra time, and I am thankful for that!

 

My week consisted of shopping at the wonderful outlet stores (so many great deals!), relaxing, watching movies and we got to see manatees! We spent some time in Downtown Disney, which has a lot of stores, restaurants, a movie theater and more. The weather was great and it was mostly warm and sunny every day. My picture above is from a display in Downtown Disney.

There is a hot air balloon in Downtown Disney that we could see from the balcony in our room. The last few times I have been to Orlando, there was another hot air balloon there and I fell in love with it. I am afraid of heights, but there is something about this balloon I love. Someday I would like to face my fear and go up in the balloon.

I did however face another fear. I don't know how to swim, but enjoy going in pools. Though, I have never put my head underwater. I tried a few years ago on my last vacation, but was too scared. I knew this year I wanted to face this fear and I am happy to report I did put my head almost completely underwater three times! The first time I definitely needed a little help (by help I mean push!) from Barbara. After that I was ok on my own and below is proof of my accomplishment!

We also had some great meals. We had a little kitchen area in both our hotels so we were able to go grocery shopping and eat in our room.  We ate out too and enjoyed Italian food from Olive Garden (they have a great deal - dinner and a take home dinner for the next night at a great price), a tuna melt from the Earl of Sandwich and a delicious pot roast dinner from Cracker Barrel! Vacations always go by so fast! I did miss Abe (he doesn't like traveling so he held down the fort at home) and was ready to come home by the end of the week. Though, it's always hard getting back into the swing of things.

Below are a few more pictures from my trip. Here's to my next vacation!