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.

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.

Mother Wound

“Let me not be weak and tell others how bleeding I am internally; how day by day it drips, and gathers, and congeals.”

Sylvia Plath seems to be where I find my voice when I’m feeling a certain strain of depression. It’s usually a sadness entwined with the sting of what I perceive to be injustice. I’ve been watching my daughter lose bits of herself to her own body. This has been happening steadily for the past three weeks. I know what this is like. I have lived this. I watched my son live this. Now it’s my other child, my only other child.

The one thing that helped me the most when I was trying to come to terms with my MS diagnosis was the constant reminding that it was happening to me and not my children. I wrapped myself in that psychological bubble wrap and it helped because I knew it could have been so much worse.  A child in distress quickly becomes an involuntary wound carried by mothers and watching my child go through the physical and emotional thievery executed by an autoimmune disease would be an always-throbbing wound that you know would never go away. These mother wounds are always next to your heart so each throb the wound makes inadvertently pushes against your heart with a heaviness that can make it hard to breathe. Just thinking about it made it hard to breathe at times so I wrapped myself up tight in knowing that it was me and not my children. I focused on my lacrosse-playing son and my dancing daughter. I watched and listened as they played their guitars and hearing them sing…..truly healing.

Almost two years ago my son was diagnosed with Rheumatoid Arthritis. Even before the official diagnosis, I knew it was what I had feared and that he was also suffering from an autoimmune disease. My mother wound throbbed and stabbed. It felt so cruel when he wasn’t able to play lacrosse his senior year of high school, especially after playing the three years before. It was heartbreaking watching him struggle to walk throughout his graduation ceremony to receive his diploma. I felt such a darkness when his hands no longer allowed him to play his guitar. I couldn’t see a way for light to reach any part of it because it was all so wrong and so unfair. It still could have been worse and my son was the one to remind me, quite simply in the car, on our way to one of his rheumatology appointments. I was grateful that my youngest was healthy, dancing, singing, playing the guitar and keyboard and doing the social things her age required- mostly shopping with friends. My son quickly found comfort in knowing his sister was okay and I knew that I had to remind myself often, check my pain and allow him to be comforted.

Today is dark and my mother wound is large and throbbing. First it was her hands. She couldn’t hold her pencil to finish writing the assignment in her history class. Her ankles followed quickly and the white braces they required at a choir concert made for a heartbreaking fashion statement on stage with the uniform black dresses and shoes worn by all the girls. The knees and toes have been swollen for days now and she doesn’t have enough function and is in too much pain to make it to school. The first step of trying to manage with pain medication alone is not working and things seem to just be getting worse. I’m here. I’m in that place I had used for comfort because it wasn’t my reality. I will find new bubble wrap and I will wrap extra around the wound next to my heart because I am a mother and both my children need me to help them. First, I need to find a way to breathe when I can’t.

Getting Up and Brushing Myself Off

I’m that person, the one I promised I wasn’t going to be. I’ve been feeling sorry for myself and have been giving myself permission to retreat into my bubble at pretty much every little bump in the road. A friend asked me if I’ve been writing and I hated my answer enough to get up and brush myself off. My last MRI sucked and that is what knocked me down…hard. I can no longer boast in my MS support group about how long it’s been since I’ve had a relapse or change in my MRI. I really liked being that person and felt like it allowed me to help others, especially the newly diagnosed. It made me feel strong and in control over a body that is anything but strong and a disease that gets most of its attention because controlling it is often tricky and at times somewhat mysterious. All of us diagnosed with Multiple Sclerosis know that we can wake up in the morning unable to walk, button our shirt, speak clearly, go to the bathroom unassisted or even see. These are the big broad ones, there are others. If I think about this too long I start to panic so I try hard not to. The part of the MS uncertainty that I didn’t pay any attention to is the part of the disease that doesn’t demand it but is there just the same-  changing MRIs. I knew by the questions I was asked after the scan that things weren’t good. I usually come back the next day to get a copy of the radiology report with a CD of all the images. I didn’t do that this time and instead waited for my appointment to get the news. I still haven’t gotten the report/CD because I still don’t want to know everything. I don’t want to know the new lesion count. My disease is progressing and does it really matter how many new lesions I have? I could wake up tomorrow and have five new ones. So, now I’m trying to decide how to proceed therapeutically. Is Copaxone still working or working enough? Will any of the others work better? No one knows. I see my doctor again next week and will have my answer. I need to move on from this and I will. Oh, I also got denied insurance for the second time because I have a preexisting condition but that is for another post….

Thank You BP MS150!

Yesterday, I went with family and friends to see the BP MS150 cyclist finish their two-day ride from Houston to Austin for MS. Texas heat, strong headwinds on day one, MS awareness, 13,000 cyclist, 150 miles and millions of dollars for Multiple Sclerosis research. It was amazing to watch so many of these generous people ride pass me to the end of their journey. My journey continues and, thanks to all these men and women, it continues a little easier. The money raised is vital to the MS community. Beyond finding a cure, there are many therapies still needed. Treating symptoms of MS gives patients a chance for a better life. Pain and fatigue can often be debilitating. Foot drop, vision problems, vertigo and a wide variety of neuropathy can also stand in the way of basic function. Right now, there are only eight disease modifying therapies available and they all have side effects which are not well tolerated. Hopefully, everyone with MS can find one that they can handle. We need more options and we need to be able to afford them. Money raised yesterday will help to do that. I was able to thank a friend who rode and I’m hoping that everyone who rode along with him know how grateful MS patients, including myself, are to each and every one of them. Being there and seeing it was just what I needed when I needed it most. My faith in humanity has been renewed. There are good, selfless, generous people out there….at least 13,000 of them! Thank you!