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!



Potty Mouth

Since my diagnosis of Multiple Sclerosis over 6 years ago, I have read many books about the disease. My favorite type of MS book to read are autobiographies. When I didn’t know anyone with MS, I found these books comforting, hearing someone tell me their story.

I learned about the book Potty Mouth by Renae Clare on Facebook.  I just finished it and really enjoyed it. This book talks about the struggles Renae has had throughout her life and her 40 years since diagnosis. Renae is honest about the struggles she has had and doesn't sugarcoat anything. The book is called Potty Mouth because Renae herself has a bit of a potty mouth, but c’mon… hasn’t MS made you want to say a few profanities now and again?! Renae has a theme of humor throughout the book and comes up with some pretty amusing chapter titles. Here are a few for your enjoyment:

 

“Hospital Beds and Catheters and Wheelchairs… Oh My!”

“My Mother Was Not a Dustpan”

“Koo Koo for Coupons” 

Renae started the book by suggestion of her psychotherapist, Dr. Cinzia Levalds. She wrote essays after each session and then compiled them into the book. Throughout the book you see Renae coming to terms with lifelong difficulties and her moving past them. Renae's ex-husband, whom she calls Fuckwad verbally abused her throughout their marriage and left her for another woman.  That is difficult enough to deal with, but throw MS into the mix and you've got some hard times for sure.

The book also gives helpful tips. Renae is now in a wheelchair and needs assistance. She had some rough times with hired help and tells us to upfront set boundaries (she learned the hard way) and questions we should ask the person coming into our home. She also tells us the benefits of Life Alert. Ya know.. "I've fallen and I can't get up?" Well, for those times you really can't get up, it truly is a lifesaver.

I found this book refreshing in the way that the book is completely honest and Renae is inspiring. No matter what crap life throws at you, it is always possible to come out on top. It's definitely not easy, but possible!

Find Renae's Facebook page for Potty Mouth at http://www.facebook.com/pages/Potty-Mouth/372368106132310

Or her website at http://www.thepottymouthbook.com
where you can hear Renae speak about the book in an interview.

 

The Flare I Could Not Ignore

My sister Annie and I with Snowball
in the late 90's

For those of us with Multiple Sclerosis we know that stress may increase our symptoms.  No one likes to be stressed out or go through something traumatic, but we never think this kind of situation will lead to a life-changing diagnosis as it did with me at the age of 26.  Back in June 2006 my cat, Snowball passed away after being a part of my family for 24 years.  Snowball was like the little brother I never had. Growing up, Snowball always knew when I was upset and would come into my bedroom to comfort me.  He liked to lay down on my school work and always was ready to play.  Even though I moved out at the age of 19, I visited home often and in 2003 when I started at my current job and got a full hour lunch break, I started having lunch with my mom at my childhood home and Snowball would join us always wanting in on people food.  Snowball lived a happy and long life, but losing him was losing a family member.  It took a toll on my parents, my older sister and me.  



Baby Snowball 1982

Less than a month later I started having tingling and numbness in my left foot and my left knee swelled to almost the size of a grapefruit.  I went to my physician who thought maybe I hit my toe and pinched a nerve.  Not before long though, my other foot became tingly and numb and soon it spread to my legs. One Saturday I was in the shower when I realized I couldn’t feel the sponge on my torso and stomach, and my fingers felt numb too. I knew something was really wrong.  I called my physician’s office, not sure really what to do since it was the weekend, but found that they had a doctor on call. Luckily, it was my doctor and she told me to go to the ER. I called my mom and off we went to my first ER visit.

Feeding Snowball

At this point I really had no clue what was going on with me, but never thought it was something serious. I had plans with my friends that night and told them I would probably get a prescription and would meet up with them later in the evening. I was in the ER all night and was admitted for 4 days, being released on Independence Day. I had MRIs, a spinal tap and numerous tests that lead to my diagnosis.  Many of the doctors that came to see me during my hospital stay had asked if I had experienced anything traumatic and it all came back to losing Snowball.

Of course, now knowing the symptoms of MS, I know I have had it a lot longer than my diagnosis date, as it often is with MSers.  As a child I remember experiencing Lhermittes, an electric like sensation that radiates from the neck and down the spine. I remember thinking it was kind of a funny feeling and every so often would bend my neck down to see if I would feel the shock again. I had no idea other people didn’t experience this until I learned about MS.

Snowball

Another example is from 2004 when I took a trip to Disneyworld for the first time. It was during this trip I experienced optic neuritis, where I lost part of my vision and saw a flashing square light. It was like when someone takes your photo and uses the flash and you see that image for a few moments afterwards. For me, that little square didn’t go away for quite some time. I don’t recall how many weeks I had it for, but I didn’t think at the time it was anything serious. It is so interesting to think back to this time, knowing now I was experiencing a flare up. But, the stress and sadness of losing my precious little Snowball brought out the strongest flare I could not ignore.

A Night With Clay Walker

On August 7, 2012 I went to a TEVA Neuroscience event that featured country star Clay Walker, who has RRMS and a panel of 3 neurologists.  The evening started with Dr. Ann Cabot who briefly explained what Multiple Sclerosis is and what therapies are currently available. Then Dr. Cabot along with Dr. Guy Buckle and Dr. James Stankiewicz sat down for a Q&A session. During registration we had the opportunity to write out questions for the doctors as well as Clay Walker.  Some of the things the doctors were asked about included BG-12, a new therapy that should be coming out in 2013, as well as the recent controversial British study about the beta interferons not delaying the progression of MS.

After the doctors finished the Q&A session there was an intermission and then a short video was shown about Clay Walker and the foundation he started. Clay Walker and his band came out and he spoke about his experience with MS in between playing some of his hits. I must admit, I was not familiar with Clay Walker’s music, but hearing him play live with his band was great. He has an upbeat energy and after hearing him speak for a little while, it became clear that he is a motivational speaker.  He told us that when he was younger he was a runner. MS had taken that away from him, but slowly he started running again. He said that if you push yourself further than you have previously after a while you will see the difference and feel triumphant over this victory, whether it is half a step or holding yourself up from your wheelchair a few moments longer. He said we should always try to push ourselves a little further.  He said our caretakers are the #1 person to help encourage us and help us meet our goals. This event was geared towards people with RRMS and their caretakers. I didn’t go with Abe, but with my friend Kim.  Clay said that our caretakers are more scared than we are about our MS, which I was glad he mentioned. I have thought about this before, but wasn't sure. So to hear someone say it out loud and confirm it, made me glad. We all need to think about how our caretakers feel, as they may not talk about it very much.   
Towards the end of the night, Clay Walker invited up Dr. Buckle to play guitar on one of their songs. Clay told us that Dr. Buckle hadn’t played for 10 years, but it sounded like he did a great job. On another song, Dr. Stankiewicz played the banjo. It was a lot of fun seeing the doctors play with the band.

It was a great night! I saw some friends and made a new one. I encourage anyone to check out their local MS events. They are free and fun! And you might get to see a famous country star!

Handicap Placard

This past November I brought my first car at the age of 32. I absolutely love having a car and am so thankful that I am able to drive.

That being said, sometimes walking from my car to places has caused some trouble, especially in the hot weather Boston has been having. After I bought my car I inquired at the office I work in if I would be able to park in their very small garage. I have been working there for 9 years but am still considered a newbie as most of my coworkers have been there for more than 20 years! So, there were people ahead of me to get the space that had newly become available. My boss suggested to me to apply for a handicap placard. It had not occurred to me before to apply for one, but followed his suggestion. I easily found the form online and had my neurologist fill out the appropriate information. Shortly afterwards I received my placard in the mail. I never had paid much attention to placards, so it was a surprise to find my license photo on the front. Lucky for me, that photo turned out really good, but I use the sleeve that was sent with the placard to cover the photo when I have it hung up in my car.

At first I felt uncomfortable using the placard. I felt like since I “look so good” other people walking by may make comments to me about why I would be using a placard. There is a handicap space across the street from my office where I park every day. After expressing some concern to a friend and coworker of mine about using the placard, she made me realize that I had no business feeling uncomfortable. Abe, my husband, also helped me understand that I needed to use it, for my own safety. After repetitive motion, my legs and arms get tingly and numb and walking even a short distance can make me feel fatigued, not to mention a handful of other symptoms. I started to feel more confident and started using the placard outside of parking at work.

One day not too long ago I was walking from my car back to my office after my lunch break and fell down. I wasn’t badly hurt but twisted my ankle and called my office (thank goodness for cell phones!) to have a couple of the girls come out to help me get back inside. It was sort of wake up call for me that I not only need to move a little slower (though that may not prevent the fall as all of us MSers know) and that in fact, I do have MS and need a little help.

I now have no problem using my placard whenever I need to.  I am so thankful that my boss suggested this to me. No one has ever made comments to me, but if they do I am ready for them. I have started to notice other people who have placards who “look good” and realize that disability (I don’t really like that word) comes in all shapes and sizes. This one happens to be 5 feet and Greek!