Feeling Brave or Reckless….or maybe Nervous

It’s been a day over a week since I’ve taken anything to control my MS. For the past five years, I’ve given myself a daily shot of glatiramer acetate (Copaxone) to fight against the progression of my Multiple Sclerosis. In all honesty, I’ve forgotten to do it here and there and there was even a few months that my neurologist actually had me taking it every other day, but I’ve never gone more than two days….ever. I am trying to decide what it is that I’m feeling right now. Am I brave, feeling reckless or am I just nervous?

The routine of administering Copaxone isn’t pleasant but it was mine and it was a way to fight back. I have had five fairly good years and, until the last year, progression-free MRI results were part of this which means Copaxone was good for me. I can’t say that I actually miss Copaxone, or giving myself Copaxone and I certainly don’t miss the effects that were always present to remind me that I was in a fight. The hot, itchy welt followed by the painful lump at each injection site that wouldn’t go away until there were at least three others weren’t enjoyable and the lipoatrophy that will never go away is depressing but they are my battle wounds from fighting. My MS tends to make me hypersensitive to anything that assaults any of my senses and Copaxone was often “nails on a chalkboard” for me. The sounds of tearing the paper off of the plastic sleeve that housed the unused syringe, the pop of the Autoject when it hit the plunger to push the medicine into my body and the clink of an empty syringe hitting the others in an echoing sharps container often hurt my ears and the smell of rubbing alcohol now makes me nauseous. My sense of touch has been assaulted the most because the pain of the needle and the even more painful liquid it administered left a continuous pain which resulted in assaulting my eyes with permanent pits under my skin that make me cringe when I look at myself. It has been five years of irritating loudness and now I have none of it and it’s just static. There is no quiet or reprieve for me when I always thought there would be, there is static and it is loud and bright in a space too quiet and dim to hold it.

I am waiting to start a new therapy to fight against the progression of my MS, which is why I stopped Copaxone. I’ve listened to and read about other people’s desire to stop their disease modifying therapy because they are tired of it all as well as those who haven’t started or been able to continue either out of fears, monetary restraints or they just don’t feel the numbers are good enough to justify the risks and tolls of MS medications. I clearly see and have felt all of these issues many times myself but now, as I do nothing but wait, I know that I’m not too tired to fight on and that my fear of disease progression is stronger than my fear of side effects as well as wishing the statistics from all the current medications showed better results to justify the risks.

So, I guess to answer my question, I feel all three of these things. I know I’m worried because I’m writing this as well as not sleeping and it feels rather reckless to be doing nothing to fight my MS but I also feel brave. I know I will be brave to go though the noise again that the new medication will bring to my body, as well as a new set of unknowns because I am certain it will also require as much and I know I had to be brave to take the leap of faith the decision required but I wish I was also brave right now, in the present as I write this through all the static.

Juicing

I haven’t seen the films, read any of the books or even seen Dr. Oz when he has talked about it and I love Dr. Oz, even if it’s for nothing more than his energy and excitement about things other doctors and talk show hosts shy away from. I didn’t do more than listen when a friend told me about how she had recently learned so much about nutrition and that juicing was taking her a step further in her healthy transformation. It wasn’t until the high school receptionist, after watching months of poor health taking it’s toll on my daughter’s education, starting talking to me about how she had seen the films, Dr. Oz, and read the books and that daily juicing had made a difference in her life. She really feels that incorporating freshly juiced vegetables and fruits into our daily routine will help my daughter feel better and get better. She pointed me in the direction to get started by explaining the different types of juicers, places to find recipes online and tips that she has learned through trial and error and I followed her lead.

I bought the juicer that one of the films shows, a few books recommend and the school receptionist has and a lot of fresh produce. It’s not hard but there is definitely a learning curve. I am not only trying to find the right combinations that taste good but also the best way to prep and feed the produce through the juicer. The more expensive juicers do the best with getting the juice, especially with the leafy greens, but there are tricks that help the less expensive juicers do so, I just had to find them. I’m still looking and learning but it’s fun and it’s healthy.

Do a Google search and you will find a ton of articles about juicing helping people with autoimmune diseases and message boards with testimonials about how much better they feel and some even writing that they have been able to stop some of their medications. Can drinking the fresh juice of the right fruits and vegetables stop the progression of Multiple Sclerosis and Rheumatoid Arthritis, or will it help fight the fatigue and ease my daughter’s angry, painful joints? I don’t know. I do know that it will give our bodies nutrition that we don’t get enough of and that is good for everyone, especially for those who don’t feel well most of the time. Like I said, there’s a learning curve and we’re still working on figuring it all out but until we do, we’re drinking what we make and it’s not bad. I will write about juicing again, in few months, and hopefully I will have progress to share.

Music Therapy

“One good thing about music, when it hits you, you feel no pain.”

Bob Marley

We had a reprieve this week and it was powerful, beautiful, exciting and soothing. Sitting in a seat with not enough leg room, surrounded by people sitting and standing wherever they could to see the stage, isn’t an ideal spot for a body like mine. The auditorium is, what I would consider, still new and it bothers me that it wasn’t built big enough to accommodate its purpose and its purpose is growing, wonderfully growing. Luckily, for all those who did not get an actual seat or a spot with a view, their ears were the ones in for a treat and a good line of vision wasn’t necessary. My experience included much more than what was rehearsed and scheduled for the night and a good line of vision was, however, necessary for me and so I am grateful for the seat with not enough leg room. It was the first choir concert of my daughter’s junior year in high school, the music was amazing and I felt no pain.

There are so many things I love about choir music. I love how it can be complex and layered yet clear and focused at the same time. Different cultures and histories are often represented as well as new technique and styling, while the arrangements can express everything from melancholy and infatuation to just plain silliness. What I love the most, however, is that it truly “takes a village” to be what it is. Even if the arrangement includes a soloist, every part needs the others to be what it is meant to be. Each voice and voice part is equally important in choirs of every size because, without each other, none can reach their full potential. It is this fundamental part of choir that gives my daughter a sense of belonging and being needed when I know it’s been hard for her to feel these things really anywhere else outside of our home. Her body has been controlled by the pain, fatigue and muscle weakness of Rheumatoid Arthritis since March of this year. The last seven months have been amongst the hardest months of my life and I can only imagine how hard they’ve been for her. There are many things she hasn’t been able to do and watching those things either go on without her or simply go away has been almost unbearable at times. Luckily, RA hasn’t taken away music. While piano has been a more successful accomplishment and was even included as part of her physical therapy, she has had only a few triumphant occasions where her hands have been able to play the guitar, but her voice has remained what it has always been….beautiful!

Before this night, a choice presented itself that, to many, wouldn’t seem as significant as it was for us. My daughter had decided years ago that she was going to finish high school early and so she took academically heavy course loads both her freshman and sophomore year and took both summer and online classes at the local community college to earn duel high school and college credit. Unfortunately, her disease has been extremely stubborn to treat and its continuing progression has meant more time at doctor appointments and home in bed. Not wanting to start college simply because she could, she decided to take the year back and graduate with her class. She now has time to gain strength physically as well as time to enjoy her last two years of high school. When having to decided classes, she had always chosen academic electives to get ahead and to appeal to university admission counselors which is why she had chosen an advanced language course, offered only the same class period as one of the two choirs her auditions had awarded her last spring. This was a painful sacrifice. After several weeks watching how hard everything was for her at school and seeing how sad and depressed she had become, I reminded her that she now had another year and the academic elective could now wait until next year. She wanted to be in the choir and we both knew it was something she really needed for herself emotionally but she really struggled making the decision. Dropping an academic class so she could sing with two choirs instead of just one felt academically foolish to her. I talked with her about what it means to take care of our emotional selves and that it was not only okay to make a choice simply because it is what you enjoy, it is sometime imperative to do so for your health….and so she did. From the moment I got off of the phone with her counselor and told her it was official there was a light in her eyes I hadn’t seen in several months and that light only grew bigger until this night, the night I sat in the seat without enough leg room and without any pain. I not only heard the beautiful music, I saw my daughter joyful on stage. There she was, lending her beautiful voice to creating such wonderful music and she was smiling.

It wasn’t until recently that I had heard the term “music therapy”. I knew that music helped with memorization and I had often made up jingles to help remember things for tests when I was in school. I also knew that music could arouse different emotions, either by its connection to a memory, the lyrics or even just its beat. I knew it had influential power but I never thought much about whether or not it had actual healing capabilities. I now know that it does because I have seen it, heard it and felt it. The music did hit me that night and I didn’t feel any pain, which isn’t the expected outcome of someone with Multiple Sclerosis sitting for a while in a seat that doesn’t allow you to stretch. I don’t know whether my daughter had several moments without physical pain or none at all that night on stage, but I do know that her emotional pain had been soothed and it showed, physically. The power music has on my daughter and her Rheumatoid Arthritis can’t be denied or ignored. Music is therapy for her and it is an important tool in her fight that should always be remembered.

Forgetting MS

I’ve been gone from here. I tried to come back once, at the beginning, but I quickly felt frivolous and even guilty because there wasn’t time for this and there never seems to be enough time. The last four months have been blurry, only because they have been so sharp. It seemed that the fracturing shift in the ground where I stood only felt steady as a bigger shift pushed it aside, for a moment. The things that have happened and the way they happened seemed to take all of me, so much so that I have had to remind myself that I have MS. Not that my body isn’t tired and doesn’t hurt because it has and does. It’s just that all of this “shifting” has had it’s own exhaustion and pain that left me unable to think of much anything else. If it weren’t for the daily alarms buzzing from my phone, the jolts from the needle piercing my skin and the tender lumps that join the others, I wouldn’t have thought about MS enough to even follow through with my treatment.

People often say that everything happens for a reason. We can break things down into their smallest parts and find cause and effect scientifically but, when we hear this, we are dealing with the bigger, simpler picture- ourselves. Have we always done something to deserve what happens or is someone else to blame? Is there a reward or a punishment to be found that is meant to teach us something? I don’t think so. I think we choose to find meaning because, even if we feel we’re being punished, we long to understand and feel like we have even the smallest amount of control. While I have been fruitlessly trying to find meaning in the things that have kept me away, my grief, worry and anger had pushed my MS away from my intellectual and emotional self. So, while I don’t have reason or meaning to why things have happened the way they have, I have learned something. MS can be forgotten, even if it’s only for a few minutes or a few months. Before the recent events and changes in my life, I didn’t think it was possible and have felt suffocated by it for years. For me, this is good to know, even if it’s only true until It is what shifts my life and makes me forget some other part of me. This is the unreason I am choosing to take from the events of the summer because things happen and, if they don’t kill us, life continues on. For a few months, my MS was just about forgotten and, now that I know it is possible, maybe next time it will be a season of joy, opportunity or even just feeling really great that leads me to forget.

Thank You BP MS150!

It’s never too late to say thank you, right? I hope not because I am so grateful for all the cyclist, organizers and volunteers who made the 2013 BP MS150 possible and successful. I tweeted about it and I made a neat photo collage for my Instagram but I want to say more-

This is the second year a friend of mine has participated in the BP MS150 which makes it my second year experiencing it. I’ve known about it for longer than two years but I only knew the basics and that I appreciated all the people involved for doing something to help people with Multiple Sclerosis. Knowing about something and experiencing something are two different things. Seeing so many cyclist finish a two-day race surrounded by so many other excited, grateful, amazed spectators is quite impressive! It’s impossible, even when MS fatigued, to not feel so much hope. I think hope is at least part of what all those involved want the people inflicted with MS to feel from their efforts and I think it’s not only a great start, it’s really big. Awareness and funding for new therapies are desperately needed and BP MS150 does not disappoint!

So, here I am finally sending my thank you to all the BP MS150 people of 2013 into the blogosphere. It’s a sleepy, my back hurts, half of my head is numb as well as my feet, what was I saying again?, late thank you, but it’s with all of my completely normal functioning heart!