Tuesday, December 18, 2012

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!

Monday, December 3, 2012

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!